My Story

Tooth and Nail

2011-03-20T06:44:00.000-07:00

It’s been a long time since I updated my blog. It’s not because I haven’t wanted to; it’s because it’s terribly difficult to get my son away from the computer. He loves researching things and looking up really old lego instructions and then building what he finds. He will soon be 8 years old. I cannot imagine where the time went.

I spent the last couple of weeks getting the multitude of scans, blood draws etc.. that it takes for Dr. J. to decide if I am finished with this round of chemotherapy or not. The answer was not. However we are getting a lot of good results. Just a few spots that didn’t get taken care of yet around the outside of one of my lungs and some close to the surface of my skin on my chest.

My body is tired of chemo though…my toes are nearly numb. And I am losing some of the toe nails. My big toe’s nail is about completely off. Ouch. Dr. J. advised me to keep holding them on with Band-Aids, which I had been doing, and eventually they would grow. The toes hurt. I can’t stand to even have a sheet cover them at night. And my hands are getting harder to work with, a little numb, but mostly just weak. I have a hard time opening a package of crackers and things like that.

Then about the same time I surprisingly had a tooth fall out. My jaw has been a mystery for a couple of years now. I started to have tooth pain right before I started radiation 2 years ago. I went to a Dentist who did the usual x-rays and turns out I only had a couple very small cavities to fill. I was surprised because I was in a lot of pain, especially in one area on my upper left side. He said I had sensitive teeth and was grinding them at night, and that was the source of the pain. True; I do have sensitive teeth and I tend to grit my teeth during the night.

I also was on a drug that has a rare but devastating side effect of causing the jaw bone to fall to pieces. Fearing that possibility Dr. J. eliminated that drug right away and I haven’t been on it since. So here it is; two years later and I suddenly have what I thought was a loose cap. Interestingly on the tooth I had the most pain from. Working hard to baby it so it doesn’t fall off before I get to the dentist…my whole tooth came flying out. I’m momentarily stunned; my son is excited because he wants me to put it under my pillow for the tooth fairy.

I look at the tooth and it strangely looks as if it was sawed off at the gum line. And even weirder to me all of my jaw pain disappeared and I felt a huge relief of pressure. I saved the tooth and took it to my next appointment for chemo and showed it to Dr. J. I was fearful that I had a jaw that was about to fall apart. But thankfully no. My jaw is fine. He said it looked to him like I had an abscess and finally it caused the tooth to fall out. Whoa…how does that happen? I have yet to visit the dentist. I find myself reluctant because this is the first time in 2 years I haven’t had jaw pain. I don’t want to mess that up! Lol. Of course I will go eventually.

I’m happy to report that the cortisone shots in my knees are working fabulously. And the generous gift from my sister of the stair chair has helped enormously. Every house should have one. Yes of course we send laundry down on it and believe it or not, one of the cats loves riding it up and down. But the pain it has eliminated every time I had to up and down those stairs makes it indispensable. Thank you Joan. What better present could there be than something that takes away someone’s pain? I’m very grateful

And so it begins...

2010-09-23T21:59:00.000-07:00

...the loss of my third head of hair. I guess this means it's real, not just my imagination. Today it's coming out in handfuls. I wonder what the next hair will look like? After my first round of chemo it came in very, very gray. After radiation it came in darker with just a little gray but more coarse in texture. This time I'm hoping for blond. I've never been a blond. Might be fun to try.

I had a lot of x-rays done yesterday. Including one where they sort of took the picture inside my mouth and down my throat. The technician let me look at it and I have to admit; it was kind of cool. He told me it was the prettiest one of those x-rays he's ever seen. It made me laugh.

The results were good. Strange but good. I was told that there is "evidence" of cancer in my bones, but no bone damage. Good. I wonder exactly what "evidence" means? Live cancer? dead cancer? a "last one to leave turn out the lights" sign? I will have to ask the Doc next time I see him. I am very happy that I don't have to undergo any kind of surgery to stabilize damaged bones. whew.

I'm so looking forward to fall and winter. I love Halloween,Thanksgiving and Christmas. I even like snow. It's wonderful to build snowmen, have snowball fights and make trails for the cats so they can get through the snow to the door easily. Just watching my son catch snowflakes on his tongue is a joy. He's growing so fast. I think we are going to have to take a lot of "snow days" this year. I don't want to miss any of it.

I had just gotten my hair to look sort of normal...

2010-09-10T15:18:00.000-07:00

If I combed it just right, wore a headband and made sure I wasn't standing around people taller than me, which is fairly easy since I'm 5'10. I thought I looked pretty good. Enough to get flirted with here and there and not get scared looks from people.

Then the dreaded day came. I eased on into my routine check up with my Oncologist, expecting the usual "I think your doing quite well, let's keep on this, it's working" Instead the Doc said that my tumor marker was up from 17-32. Egads, this cannot be good. He set up a PET scan for me which I took the very next day.

The results were disheartening. New growth in knee, hip, thigh and a spot inside the pleural space in my lung where they did the fix before. Dear Dr. Johnson looked angry and confused as he read the results to first himself and then to me. Baffling.

The conclusion; time for more chemo. I suppose I have done fairly well. It's been about 2 1/2 years since my first chemo experience. I had 5 infusions and then just herceptin all this time, until now. I did have the brain radiation about a year after that initial chemo treatment...so this will make my third head of hair!

I started treatment yesterday. Not used to the 4 hour session...it seemed to go on forever. But I must say that it was not nearly as miserable as my very first treatment. I can only think that my better condition now has made a big difference. My first treatment I had a collapsed lung and could only walk a very short distance; like from the house to the car without having to stop and catch my breath. Now I am much, much stronger.

None of the effects; except tiredness have kicked in yet. I'm hoping for an easier ride this time.

A photo of my son snuggling with me during my treatment. He is the thing I love most in the world.

Blind in one eye...can see out of the other....

2010-05-22T18:23:00.000-07:00

It's true. I have lost the vision in my left eye! Did not expect that! It all started a couple weeks ago or so. I can't exactly pin-point the moment that I noticed; but suddenly I could see nothing out of that eye but a large silvery grey cloudy thing. Kind of how it looks when you fly through a cloud on an airplane and you try to look out the window.

I rationalized it for a few days; allergies, lack of sleep, shampoo in my eye. But it didn't go away. Finally I thought maybe I had an infection of some sort, so I got myself into the neighborhood insta-care. The insta-care doc looked at my eye for a minute asked a few questions about allergies and then suddenly left the room. I could hear him talking to a couple of people outside the door. (Do they honestly think you can't hear them????)I heard him say "she has a bubble in her eye" and then someone said "she needs to go to an ophthalmologist. He came back in the room, noticeably nervous and suggested I get to my eye doctor asap.

So the next day I went to my eye guy. I got dilated, took the exam and at first the doctor was stumped. Finally he came up with a diagnosis Ocular Neuropathy caused by radiation. Huh? He explained that basically he thinks damage from the radiation I had about 15 months ago has caused my pupil to be unresponsive. He booked a brain MRI for me the next day. I have yet to get the results but expect them next monday.

Of course the next thing I did was google. Yikes. Frightening. It's a rare side effect of brain radiation that usually makes it's appearance somewhere around the 12-18th month after receiving radiation. I'm at about 14 months. It can also happen to the other eye! Reading that gave me a cold chill of fear. Holy crap. How would I live, raise my son? I read that if the second eye is going to go, it usually follows the first in about 2 1/2 to 3 weeks. But it can happen anytime. I figure I'm at the 2 week point now. When I wake up in the morning the first thing I do is test my eye. Any clouds? floatie things? no..whew.

Getting used to just seeing out of my right eye has been an adventure. I have run into a few walls when trying to walk and turn to the left and today when I drove through Wendy's to get my son a kid's meal, I had to turn to the left and get next to the window...no big deal. Except that I realized much too late that I was miles away from the window. Thought I was right next to it. And it bothered me while picking up a few things from the Walgreens and I couldn't see my son out of the corner of my eye when he walked on my left side. I think a few more days and I'll have the hang of it.

I'm not sure how to do it with no eyes. I keep telling myself that there are blind people living greatly productive lives all over the world. That helps a little. And I just keep staring at things, trying to memorize my sons face, the cat's stripes, the mountains. It's an amazing question...if you thought there was a chance you could lose your sight in the next three weeks what would you want to see? I decided to stare at my son, watch his facial expressions, moods, dances, everything.

There is only one treatment they use for this condition; hyperbolic oxygen. You know one of those things Micheal Jackson used to sleep in? It won't give me the sight back, but it can stabilize the vision I have. I looked at photos of it on google. You get shut in a space-age looking tube thing for up to 2 hours. Claustrophobia...yikes. I'm going to need a lot of valium.

2 year anniversary

2010-03-27T18:35:00.000-07:00

I am now a two year, two time cancer survivor. It was about this time two years ago that I had that phone call I will never forget..."you have really bad cancer Londy". Nothing in my life had ever made me feel that frightened and that alone.

I've learned so much in these two years. I've learned about this disease that is so common and yet takes so many lives. I've come to appreciate the older people that I run into in the treatment rooms who always seem happier than most people I know. I've come to appreciate what is really important in life. Things that used to really get me steamed, I really don't give a damn about anymore.

Recently an old friend who is going through marital problems told me that she thought when her husband got cancer it would make him come back to the family. While I empathize with her; I also know that cancer makes you take stock of your life. At first I was in shock, then I started to think about time. Time. Suddenly I didn't want to waste any of it. Didn't want to be with people I don't like, do anything I don't like etc. And for a moment I understood her husband.

Two years have passed and I'm still the same way. I've ended a few relationships and renewed some that were important to me. I used to fantasize about contacting old boyfriends and other people that I am still holding onto anger about and telling them what jerks they were... lol. I thought that might make a funny movie; a woman getting cancer and knowing her time is limited she stalks all her old flames and causes chaos in their lives. Sandra Bullock could play her...

I'm excited to see what the next two years bring. My son is about to turn 7. This alone awes me. 7? Where did those years go? One thing, now I love every day and every moment I get to spend with him. I am grateful.

Retiring??? noooooooo......

2010-02-24T17:01:00.000-08:00

I had my herceptin infusion on Monday. Nothing unusual. But I found out that Super Nurse Susan is retiring next month. Yikes! She is so amazing, I've never encountered a nurse like her. Her vast amount of knowlege and experience meant so much to me. Without her I would have been much more insecure while going through treatments.

Don't get me wrong; I think anybody that can afford to retire should do it and enjoy life. She said she plans to enjoy her new Grandbaby and do some outdoors things like kiaking down the river. I don't blame her. I'm sure she has witnessed what is ultimately important in life...and it isn't the paycheck.

She was the person who gently explained what was going to happen to you the first time you got chemo. Honest, reassuring, empathic. I heard her do this many times and each time she showed the same concern and respect for the patient. I can't quite imagine who will fill that role now.

Meanwhile... I am feeling so good. I still get tired at times, but I have more energy and way less pain than I did just a few months ago. My hair still hasn't grown all the way in since radiation. Still a bald circle on the top of my head. But I don't care. I've become fond of hats.

I'm focusing on getting my life caught back up to normal. Hey; I even finished my taxes..ha! and..um..in case your reading this IRS..it was my pleasure to finally get them done for you...forgive me?

A clean mind...

2009-12-01T16:27:00.000-08:00

I've been having a bout of headaches recently. Bad enough to scare me. I thought.. "oh no...more tumors". I had a follow up head MRI already scheduled so I waited and took painkillers. They were so intense I would have to take 2 Lortab 10's in order to get relief.

After having to re-schedule the appointment a couple times because of a lack of transportation. I have to take valium to get through a head MRI and thus I need a driver to take me to and from this procedure. Finally the day came. After dozing through the noisy MRI I was to meet with Dr. Whipple.

I went through the usual weight, blood pressure routine. And waited for him to come in for the appointment. We talked for a minute and then he ran out to look at the results of my test.

He returned looking like someone that had just won a small jackpot in vegas or something; you know that kind of happy smirk. He first said that it was the fastest test result he had ever gotten back. Then he said there was "nothing there". Which of course gets some giggles, like you have an empty head... But the important thing is MY CANCER DISAPPEARED! My head is "clean".

Yes! I knew it would. There is no way I was meant to have brain tumors. It's been a long haul. It was harder than I thought it would be and I think I am still recovering. But let me tell you; it is an amazing feeling. My hair is trying to grow back. I still have bald spots. But I can wear hats forever!

Now for those headaches.... I think it is stress and jaw problem. But they don't scare me anymore :-)

The tale of the two tomatoes

2009-10-30T14:46:00.001-07:00

My son picked out a huge tomato plant this last spring. With the help of his Uncle Lee and Aunt Linda it got planted along with a few other vegetables. After much patient anticipation the first few green tomatoes started to turn red. Soon we were picking 3 or 4 per day from this plant. They were delicious.

One day my son and I were doing our picking when I found a large tomato that some bugs had gotten to before we did. I picked it off the plant and tossed it on the ground. This greatly upset my son. He really wanted me to keep it. Then I found one more that was undesirable and also tossed it. I explained that we couldn’t eat buggy tomatoes and it was good just to leave them there on the ground and let go. An argument went on for awhile. Him explaining that he wanted to use “every” tomato his plant grew, no matter what, and me explaining why we couldn’t use the bad ones. Finally he reluctantly gave in and we went inside with our harvest.

The next morning around 5 a.m.; I heard a noise that woke me from a sound slumber. I got my eyes open just in time to see from my bed my son putting something on the floor by the door to his room. Then he vanished as quiet as a mouse. Perplexed, I got up and looked in his room. There I saw the two buggy tomatoes behind his dresser. Egads! What do I do now?

I went down the hallway and looked over the stairs to see where he was. I couldn’t see him. So I went down to look and as I approached our family room a very cheerful “hello Mommy” greeted me from our recliner. The TV was on and he managed to look like he had been watching NickJr for hours. He had taken his jacket off….how at 5 a.m. he had the calm mind while pulling off such a caper to put on a jacket and shoes is mind blowing to me.

I asked if he was okay and he said “yes, just wanted to get up early and watch some TV”. Being exhausted myself I said “okay” and told him that I was going to go back to bed for a little while. He said that was fine and he would just stay there and watch TV. On the way back up the stairs I stopped in the kitchen and grabbed a couple of zip-lock bags. It was way too early in the morning for me to deal with the situation so I thought best to contain it and figure things out later.

I snuck in his room; crawled down and reached behind the dresser to get the tomatoes. Ugh, gross… I sealed each one in a bag and then put them back behind the dresser. Still mystified why he would do such a thing; I rationalized that it was probably a little way to feel like he was in control when our situation has been so out of our control. It’s scary when your Mom is sick. He’s a tough kid, but he still gets upset when he hears me cough or something, and he gets nervous when I have to get my infusions each month. I think he is afraid I’ll have to stay in the hospital again. So; I think a few buggy tomatoes; no big deal. I figured I would just talk to him later. And with that thought I went back to bed.

Now here we are almost the end of October. Yes, I completely forgot about the tomatoes. I am walking down our hallway and suddenly get hit with a strong smell that to me smells like cat pee. I have 2 indoor cats and neither of which have ever done their business anywhere other than were they are supposed to. I start to worry about the oldest one that I had for about 12 years because I know going out of the box is a sign of illness. I start looking for the source of the smell. I kept coming back to my son’s room. That was where the smell was the strongest.

So I called him and our nanny upstairs to ask if they could identify where the smell was coming from and help me find it. Still thinking it was a cat thing, I looked all over for anything that looked like it… nothing. Just a smell. I bought a large air freshener that afternoon and hoped that if it was the cat I would see her in the act and could take her to the vet.

That evening my son in the midst of playing a game with me says “Mom, I know where the smell is coming from and it’s not cat pee”. What? I’m confused. He continues to tell me that it is something he hid in his room. Then my memory comes back to me…the tomatoes! He was being candid and so sweet I let him tell me about as if I didn’t know.

He concluded saying that he still didn’t want to give up the tomatoes and asked me to help him think of something to do to save them. After brainstorming for a few minutes I tell him he can freeze them. He is a little concerned that someone would see them in the freezer and freak out. So we concoct a plan to wrap them in white freezer paper that I happened to have on hand, write that it belongs to him on the outside and place it in a spot on our freezer that is sort of hard to access and see if you don’t know it’s there. This thrills him.

We gather our supplies and approach the toxic tomato area. He grabs his gardening gloves to wear so he doesn’t have to touch them. It’s hard not to laugh seeing him in all black clothes, he was trying on his Halloween costume earlier, and his garden gloves; like a spy ready to unearth some hidden biological weapon.

He reaches in and brings out the first bag. Ohhh my. You do not want to see a buggy tomato that has been in a zip lock bag in a warm room for 4 months…trust me. He says the bag is leaking and we hurry and put it in another bag. The second one comes out and it looks even more horrid than the first. I ask him if he is sure he wants to keep them and he very firmly says “yes”.

I wrap them up in the freezer paper and he writes his name and “private” on the outside. We take it down to the deep freeze and put it in the secret spot. Which is where they will stay until he gets married. And then I plan to give the package to his bride along with a copy of this blog.

Later I asked him why he did it? He said he really just wanted to keep the tomatoes and he wanted to see what would happen to them. I asked him if he had anything else in his room that could turn out badly and he said he had a few secret things hidden but nothing that would go moldy or rotten and start to stink.

I’m relieved that it wasn’t a dead mouse or something…..

"Mom, there is a rainbow, you just don't see it"

2009-10-02T17:27:00.000-07:00

wow... I really haven't blogged for awhile have I? I think about it but I've been so busy doing other things I haven't had the opportunity. Partly it's because my son loves the computer and he spends several hours per day researching his favorite topics; which for now is meteorology and geography. He taught himself how to use google maps and he spends hours looking up monuments and different counties that intrigue him. It's fun to watch him.

And it's also partly because I've been trying to catch up on the rest of my life. Cancer seemed to take over for the last couple of years. I am so behind on so many things. Like for example - my taxes. Today I finally got all of my numbers compiled and into my computer so I can get them to my accountant.

That was kind of a hard journey. I had to go back to January 2007. It made me remember things; like my Dad's passing, when I first got sick, employees I'm happy to be rid of, that stupid public relations guy I hired.... all sorts of things. It also looked like we didn't have a whole lot of fun over those 2 years. Fun is something I wish to prioritize now.

A few days ago we had a rainy day. In our house that means my son wakes up early, excited and ready to "storm chase". He was outside with Emily observing and analyzing the cloud formations. He called in to me and asked me to bring the camera out to take a picture of the rainbow. I went to the door and looked. I saw no rainbow anywhere. After a minute or two I said "there isn't a rainbow". He looked at me with exasperation and said "Mom, there is a rainbow, you just don't see it" Then he pointed to the sky and low and behold a rainbow was forming.

I thought about that statement for a long time. "There is a rainbow, you just don't see it". I think I have been in a dark cloud for awhile. I'm now ready to see all the rainbows.

Incurable vs. terminal

2009-07-19T19:25:00.000-07:00

It's true; I have not blogged in a long time. It's the result of my long recovery from the radiation. wow. About a month ago it really knocked me down. My exhaustion is intense and I continue to have jaw pain that can bring tears to my eyes. I am taking a lortab every 4 hours to calm it down. Which makes me sleepy.... and thus adds to the exhaustion. I've also lost about 20 pounds. A result of the way the radiation effected my taste; nothing tastes good anymore; just the taste of some things make me feel like vomiting... I'm not sure I will eat tuna ever again.... add the jaw pain and a slight bout with the regular old fashioned flu and it has been an easy diet to follow.

I am awaiting results from xrays taken of my jaw. One of the medications I take, Zometa; can cause a condition known as "osteonecrosis of the jaw". Scary. Makes your teeth fall out. I don't think I have it. I think I am just clenching my jaws constantly. I catch myself doing it. But so far I can't seem to stop it. I tried one of those jaw guard things... wtf? That was worse.

But if I get rid of the jaw pain and get some energy back I'll be good!

During the past couple of weeks; I asked one of my Docs to write me a letter explaining my diagnosis that I could use in negotiating some financial things. I had gotten one about a year ago from my other Doctor but it was suggested to me that I could use an updated one.

When Dr. Johnson wrote the first one a year or so ago, kind hearted that he is; he called me first and "explained" that the language he would be using would be harsh so as to make the letter most effective and not to pay to much attention to it because there was "hope" for me. Um... okay, good.

I was glad he did because his letter did hit me a little. His phrase was "treatable, but incurable". I chewed on that for a time, but it wasn't that horrible to me. I understood. Lots of things are treatable but not curable. In a short time I was over the words and on with my "cure".

Then a year later, I get Dr. Whipple's letter. No phone call came this time... no big deal. I am a veteran now; an experienced survivor. But his definition took me back. He said I was "treatable, but ultimately considered terminal". This is the first time the word "terminal" had been stated in any form to me. It took me some time to get my mind around it.

What is the difference between incurable and terminal? Is there any? I tortured myself for days over this. I read an interview between Oprah and Elizabeth Edwards where she referred to herself as both with a slash like this "incurable/terminal". Hmmmmm....

Usually you read or hear the word terminal followed by a certain amount of time to live. I have been given no such time-line. Fact is they don't know. No one knows. It could be a year or 10 years or more.... it was when I had this thought that it hit me;

We are all terminal.

None of us knows if we have a year, 10 years or more. We just don't.

Think about that; I've thought about it a lot. Somehow it helps me ignore my cancer just a little bit. It seems like my whole life revolves around cancer. I'm tired of that. I wish for a day when I don't have an appointment, conversation, errand, or anything else that has anything to do with cancer or it's effect on my life. I want my friends to talk to me about who Jenifer Aniston is dating and my family to act like they just stopped by for the hell of it...

It worked.

2009-06-18T10:03:00.000-07:00

I had my follow up head MRI on Monday. I received a phone call from Dr. Whipple on Tuesday afternoon. Of course I didn't answer the phone. You all know how I am.... so he left a message.

He said I had "dramatic results". Rapidly shrinking cancer. While he still is consulting with the Doctor that does the gamma knife surgery; he isn't sure there will be any need for it. He also expects the cancer to continue to shrink and probably disappear completely.

whew....

I still have a lot of pain while recovering, but now I know it's working it seems more bearable.

So happy birthday to me! Could there be a better present?

now if I could find that damn 18 wheeler...

2009-06-08T15:31:00.001-07:00

It's now been 20+ days since my last whole brain radiation treatment. I'm not giving you an exact count because it would take a lot of effort to figure it out. That's not normal for me; usually I can do number type things like that with no effort at all. But I've noticed a lot more difficulty with that over the last week or so. Which is amazingly frustrating when you have a child who asks you things like "what is 2 million plus 6 million plus 10,500?" on a regular basis. I don't know why he does this, he just comes up with math problems, and often will shoot out 6 or so before he gets bored with it. I used to be able just to flip back the answer....

The past few weeks have been some of the most difficult I've had. I would put it up there on the list as a tiny bit harder than chemo; but seemingly shorter, so they even out. But not as hard as having chest tubes in your side for a week. Definitely not something I want to do again.

I've had several effects from the treatments. Some quite surprising. Shortly after Valentine's Day this year I went to get my eyes tested and my glasses updated. While processing Jungle Roses orders I noticed that I was having a harder time seeing than before and was convinced I just needed an update. Now since radiation my eyes have improved a great deal. And all those cool glasses... one of which I haven't even picked up yet... are no longer what I need. I used to need correction at a distance and up close. Now I can see up close well and just need distance help. Dr. Johnson said this is definitley a sign of the radiation working. And I suppose in a few months I'll go get all new glasses again.

I also was in the midst of getting some dental work done when I got my brain mets diagnosis. At the time I did not remember having a toothache in my life. I had suddenly started having aches so bad I thought I was in for a root canal. Oddly the dentist found a cavity on the other side of my mouth and nothing on the tooth or area in question. He treated it for "sensitivity". Which seemed to help. Now I have that same ache back. But now on both sides of my jaw. It's so intense I'm living Lortab to Lortab. I'm hoping it disappears soon.

My tounge is still numb and so is a tiny part of my mouth. Which at times makes me talk a little funny. But nobody seems to notice; or if they do they do not react.

I'm almost completely bald now. Except for that little beardy looking part at the back of my neck. Which is kind of fun because it makes it look like I have hair under my hat because it sticks out on the bottom in the back. But wow... looks crazy without the hat.

And the most baffling to me; for days I heard noises that were not there. Seriously, I thought there was an 18 wheeler parked somewhere near my house with the engine running all night. I even looked for it. Then I had an "ohhh....." and realized it was me. That's gone for the most part now. Although once in a great while I hear it, but only for a second.

The worst though... exhaustion. I'm tired. More than I ever remember. I wake up tired, I go through the day tired and go to sleep tired. Worse than a hang-over after the biggest party. Worse than Mother of a newborn tired.

My follow up MRI to see how well the treatments worked is scheduled for the 29th. I can't wait. With all of this happening I can't imagine that it hasn't worked really well. I'm expecting it.

cool hair and good news!

2009-05-23T10:17:00.000-07:00

This is how my hair looks in the back. It has fallen out exactly where the radiation beams zoomed accross the back of my head. Kinda cool I think. But now it is falling out pretty much all over so it doesn't look quite so cool. I also have a sunburned forhead that looks strange. It stops in a straight line right above my eyebrows. But no body seems to notice that when I have a hat or scarf on; probably looks like I had a chemical peel or something.

My good news is that I do not have to have more chemo! I'm so thrilled. I thought I was in for a long, miserable summer. But instead I now intend to have a really fun one and make it as fun and memorable for my son as I can. Dr. Johnson said the tumor/mass in my breast wasn't there anymore. It has moved out. Evicted. gone. I'm changing the locks; it won't be back.

You don't need to poke me with a fork....I know I'm done :-)

2009-05-16T08:35:00.000-07:00

Yesterday afternoon I had my last whole brain radiation treatment. It seems like a very weird dream. You know those kind where you are half awake and half asleep? I cannot believe I did that. Of course then I see my hair dropping off and reality hits. They gave me my mask as a "souviener". Not sure what to do with it. I think I'll hide it for a few years and then one day make it into a piece of art for my office... or my house... either would be weirdly cool. It's a little too scary to just have laying around now and I get a tiny bit nauseated when I see it... lol. It may reside in the Garage for awhile.

Now I just wait and recover for the next 6 weeks. Then I will have another MRI to see how much disappeared and make plans for the gamma knife if necessary. It will be up to Dr. Johnson if I do chemo again. They can schedule gamma knife during chemo, so it might be both at the same time.

I'm actually feeling better than I have in the past few weeks. I still have the worlds worst sore throat, but the liquid lortab helps and I wasn't as tired yesterday. I'm hoping for a fast recovery. The hair is different; when my hair fell out from chemo, my scalp would be a little tender and then it would go. That would happen after each chemo infusion. This stuff hurts. Yes, what hair I have left hurts. lol. It hurst to wash, hurts to touch. Doc said that goes away when it all falls out. Great; now I'm hoping my hair falls out...my how cancer changes a girl.

Me and one of the techs about to start my last treatment.

I look so happy because this is after my last treatment. Cool mask eh?

just don't sneeze...

2009-05-13T10:38:00.000-07:00

I'm now down to my last 3 treatments! 3! three! I'm so glad this part is almost over. And now it hurts. I have the worst sore throat; like one you can't even imagine. The Doctor said it was "treatment" related and due to the radiation. So I'm doing anything to dull the pain. They gave me liquid lortab...wow. It works for a little while. Ice chips, candy, yogurt... anything helps for a few minutes.

But then yesterday morning.... I sneezed. OMG. That was the worst. It felt like my throat got turned inside out. I felt like one of those cartoons where someone eats surpise super devil hot sauce and fire comes out of their mouth and ears.........there were tears. I have to make sure I do not sneeze again! That's self control right? So if I think I'm going to sneeze I'm going to try and hypnotize myself out of it....

Meanwhile; I'm super happy with my nutitionist who gave me a heart-healthy diet to follow. I'm doing it now. Of course he came in with the "just don't throw up" thing and I understand why, but I told him I didn't just want to be "stable"; I wanted to be better. He took everything I said into account and then threw out the papers he had orginally brought for me. Instead he emailed me a complete diet plan with sample menus and all. He said he will continue working with me after my treatments so I can meet my goals and use the diet to help prevent a reoccurrence. Yes!

We have a new babysitter/nanny starting today. Yeah I know.. I've lost count. She seems really perfect though; and my son really liked her. I'm hoping she can play and entertain and help teach him though this summer. I know it's going to be sort of long summer for me, but I'm determined to make it as fun for him as possible. Right now he has plans to build a huge K'nex roller coaster that takes up our whole living room. I'm bidding on the pieces on ebay now, and I'm going to let him do just that.

Half way...

2009-05-07T07:34:00.001-07:00

Yesterday I reached the half-way milestone in my radiation treatments. This is good. It's not fun, but not as horrid as I thought it might be... at least not yet...lol. I know that they say side effects can kick in further down the road. But for now it's okay. I would say a little easier than chemo. With chemo you know you will be really sick for like a week and then sort of rebound to functioning again. So you know what to expect. This has the unexpecteds, but not the immediate feeling of "ouch" that the chemo does.

The treatments are short; but wow... I will never forget that smell or somewhat skin burning feeling as those blasts of light go through. Unreal. It feels so "outer space". I'm sure if you are kidnapped by Aliens they have such a machine...

I made a mistake though... egads. I had felt those side effects and that coupled with some well-placed "you could have this happen...." type of comments from others who didn't mean to scare me; I over did the steriods hoping to avoid worse side effects. So I made myself steroid sick. Not good. Instead of staying at the minimum like suggested to me by the doc; I kept upping until I was at the max thinking I needed to in order to avoid losing my balance or ability to speak...... NO... didn't need it.

So I've been cutting back on them as suggested and I feel a lot, lot better. Effects not worse and according to the doc are probably from the treatment itself and not some "giant tumor try to strangle your brain stem..." thanks.

My son is so mad at me. The last week has been rough. We talked about it. He is mad that I am sick again, he is mad that I have to go get "medicine" every day, he is mad that I was so well and fun and now it's ruined. It's hard. His big-time temper is coming out in every way. And I don't blame him. I'm pissed off too. He battles for my attention and doesn't want me to leave his side. I know we will get through it, but whew...

So yesterday on my way back from radiation I stopped at the sporting goods store and bought him boxing gloves, targets, a hanging boxing bag and showed him how to use them. It worked. He loved pummling the targets in my hands and kicking and running at them.... or um.. .me. It's kind of hard for a Mom to say "okay go ahead and learn to fight and hit...as long as I'm safe..." but I don't care anymore. It needs to be. And if one day he is Golden Gloves Champion; I'll be proud.

what it's like to have more than 20 brain tumors....

2009-04-28T13:59:00.000-07:00

...freaky.

I had been symptom free for the most part; except for that small part of the front of my tounge that had gone numb. Then suddenly over the weekend I started feeling stuff. Like for example;

Nausea. Oh my.... hate that. Both my docs were out of their offices so I had to pursue until I found the on call guy. He sounded sort of shocked and awed by my chart.. I'm getting used to that. He said of course he could get me something to help. When I got to the pharmacy the pharmacist said "what do you want.." "huh," I said "I don't know this is new for me..." The pharmacists said that the "doctor said to give you anyting you want.." Ohhhhhh, now my mind goes off into possibility. I glaze over as I am thinking of the street value of certain things and how many cancer bills could get paid... I'm interupted by the pharmacist who sees my visions too and seems to know what I am thinking.. and he says "he means do you want tablets or suppositories." Oh... ewe. I pick tablets. He points out that there is a concern with driving because it can cause severe drowsiness. Oh rats. So I head over to the drug store and load up on black licorice and cream soda. My own nausea cure.

My son is a huge Monopoly genius. Seriously he can play the over 10 year old version like an expert and we had just gotten the new electronic banking game. He was excited to play. I can't add up the numbers on the dice without extreme concentration. Good thing he can.

Ever have a car that you rammed into a big chuckhole? Knocks out your suspension and for awhile it pulls to one side or the other? That's how it feels to walk. I start out straight but my legs pull to the right, then I straighten up and my legs overcorrect and pull me to the left. I look like I am walking under the influence.

At times it feels like I have a hundred misquito bites on my head. It itches, sometimes feels more like a bite from a hungry ant met on a picnic. It makes it uncomfortable to lay my head down at night.

Better though; once the steriods started to kick in a lot of this went away. But the steriods keep me awake all night... and all day...

I had my first radiation treatment yesterday. It went easy. Today I am braving it without the benefit of Valium. I think I can handle the promised 5 minutes. Otherwise they promised to knock me out with a big rubber mallet. The techs are jokers. They have to be I guess....

I found a photo of the radiation mask on someone's blog. I'm snatching it. Thanks to whomever you are. This is what it is like. You also have your feet attached and hands to remind you not to move. It looks worse than it is.... really.

20? Did he just say 20?

2009-04-23T14:44:00.001-07:00

It was a long weekend, and an even longer Monday. I had convinced myself that no news was good news. Then I finally go the call. I was in the parking lot of the grocery store at about 5pm Tuesday. I had waited and waited and finally thought "it must be nothing" and that I would have heard by now if it was. So I packed us up to the store.

I could tell the minute he said hello that it was bad news. I had prepared myself for what I thought was the worst, a couple spots, cyber knife, you'll be okay. What I heard was something that I didn't even have enough of a concept of to create a nightmare. "Multiple spots, you need whole brain radiation". I was stunned. I did not know what to say. Horns were honking around me, my son was listening carefully. In that moment time stopped for me.

So I ask; what about cyber knife? He says "no, there are too many". I ask "how many?" I can tell he doesn't want to say, so he says "it just says multiple". I ask, "like what 4 or 5?" He says "no, like 20... but they are small and widespread". 20? I cannot believe he just said "20". He says that cyber knife won't work on that many and I need to start asap. They will make appointments for me and call in a prescription for steriods to help with brain swelling.

He says that word that I now find to be the magic one "treatable". I know that means we cannot cure you, but we can kill this stuff and give you some time. It may or may not come back and we don't know if or when it will. Time. I've now come to the point where I am fighting for "time". Damn. These won't kill me, but may have shortened my life by a few more years. I tell him I'm "okay, as long as it is treatable because I need to be here for awhile longer.." He says "yes I know, and I promise we will do our best for you". I tell him to have a good vacation because I will need him to be fresh when he gets back.

Whole brain radiation scared me. It came up in my previous google searches and it sounded so aweful I skipped over it and zoomed in on the cyber knife. Now I had to go back and read it. Too many images of things like Young Frankenstein and bad looney tune cartoons.

The next day I get a flurry of phone calls and an insistant appointment for that day with the radiology doctor. I had to juggle a dental appointment to see him, but went back to get the dental work because you cannot have dental work while being radiated. Finally I arrive at the cancer center offices. It's a different one than I usually go to for chemo. It's a lot more fancy.

First I meet with a tech who takes my vitals and starts to explain the radiation procedures to me. And much to my relief; it doesn't sound as bad as I thought. About the same side effects as chemo, but they have drugs for those. Except for fatigue. Can't drug away the fatigue. It's highly targeted, not the "we dip your brain in acid" impression I had. I feel much better. After she was done I ask her, "So if you were me would you have this done?" I can tell this question shocks her. But to her credit she only hesitated for a brief moment, she teared up and said "yes, absolutely". She goes on to say "you are a single Mom, you need all the time you can get. I would do it without a doubt." I like her.

Next my radiation doctor comes in. I had met him a year before. He was the new shoe guy. He has changed a little. He wears Calvin Klein socks. No body here does that.. it amuses me. He goes in deeper detail on what is going on in my brain. "Yes, multiple spots, yes 20 or so," I ask him what size? and he says most of them are very small and pulls a pen out of a drawer to show me, about the size of the end of a pen or to me a sequin. They are the size of a sequin. Can't get the dancer out of the girl... Then he says one of them is bigger; "an inch across". whoa. an inch? Yes, an inch.

Based on all of this and my history he recommends whole brain radiation for 2-3 weeks daily, and then after about a month probably cyber knife on the big one. He says there is a possibility that the radiation will knock out the big one two, we just have to wait and see. I ask him about long term effects and he said some people do get memory problems like a year after treatment stops. He says you might forget names, won't be able to balance your checkbook... ah geez.. I can't do that now. Ask my accountant.

He offers to show me my MRI. I've never had a doctor offer to show me any of my scans before. I'm thrilled. I guess most people don't want to see them. He said "I thought you might.." so we go into his office where he pulls them up on the computer. MRI's are done in layers, like a cake sort of . I'm awed by what I see. He shows me layer by layer and I see at least 5-6 spots on each layer. It's everywhere... looks like my brain has measles. I think there is more than 20. I see the big one, it is f-ing huge compared to the others and sits right next to my brain stem. I'm stunned. Finally I say "okay, let's get rid of them".

A flurry of activity happens next. Appointment times get discussed, and somebody mentions doing my "set up" the next day. To do whole brain radiation you have to be perfectly still and they have to precisely aim the beams each time. So they achieve this by making a mask of your head that bolts you down to the table each time. I'm somewhat claustrophobic, I see trouble coming.

I was reasurred that I only have to be in the mask for about 5 minutes. I think that I can do. But nobody mentions the 30 minutes or so it takes to make the mask... So I showed up today to get my mask made. It's a soft plastic mesh that they stretch over your head. You cannot open your eyes and you cannot talk. You are bolted down until it dries. The tech suggested I take a valium before I come in on Monday. lol.

I'm over the drama now. I just want to get it done and over with. So I'll lose my hair again and be tired. Been there done that... I'm still going to do our Mother's Day business. I think that will be good for me and keep something positive going on while I'm being radiated. I'll probably to a smaller number of orders and enjoy it.

Okay...now I'm really scared.

2009-04-19T11:38:00.000-07:00

I got my results of the scans on Friday. In Dr. Johnson's carefully chosen words "it appears to me the diseases isn't any worse..." good right? yes, very good. Except a huge surprise; a few spots of "uptake" in your brain. WHAT??

Did not even think or imagine something like that. Uptake is used in PET lingo to mean that that are of the body is having a lot of metabolic activity. Which is how cancer shows up on the PET scan. It's excellent if you have another test like an MRI or a CT to match it against to see if indeed an "uptake" spot is a tumor. The PET can tell you if the tumor is alive or dead. So yes, it's possible to have "uptake" and not cancer in that spot.

In the words of Prince Ahmed the head of nuclear medicine; it "could be metastatic cancer or normal metabolic activity in the brain." Dr. Johnson called that "vague". But man talk about making your heart drop out of your chest... brain tumors? I can't imagine anything more frightening at this point.

Next came the questions; have you had headaches... yes geez. But I also needed new lenses in my glasses and I went through Valentine's Day and wow.. that's always a headache. However I haven't had a headache since I got the new lenses and so gee... not in at least a month or more. I've been headache free.

Have you lost you balance? hmmmm.. not really. I can tip toe through my house where the floor is full of lego and k'nex pieces easily and with grace. Haven't fallen down. That's a big no.

Any coordination problems? No. I still have that single Mom ability to do about 8 things at once.

All big NO's.

So you think I'd be more relaxed about it all. But damn; this is really a scary thing for me.

Dr. Johnson ordered an MRI of my head asap. I go in on Monday morning at 7am. I'm slightly claustrophobic and so MRI's are not comfortable for me anyway. So he gave me some valium to take. Which is a good thing because otherwise it would have been a weekend of high anxiety for me. The valium has at least allowed me to sleep.

It's difficult to be alone with a child to take care of with something like this going on. Can't talk to a 6 year old about it; so it stews in your mind. I googled it once; but what I read was so awful I stopped. I know sometimes you find information online that is really old or you find what some patient wrote in a blog that was in a really bad mood and it is like a knife cutting through your optimism.

If they do find something; which in a cute attempt at humor Dr. Johnson assured me that "they will find something"... you know a brain...hehehe. Sweet isn't he?? lol. Then the approach would be radiation to wipe out the cancer spots and then back on my usual routine therapy. Maybe follow up with some chemo. All depends on what/if they find.

He did say that he thought it was a very, very small chance that there would be anything. The cancer would have had to make it up there during my time off herceptin; not likely. And I haven't got the other symptoms, blood tests, tumor markers all normal. He tried to be reassuring. But I think anyone would be freaked-out with even the idea of it.

I can't imagine that if there were live cancer cells floating around at that time that they didn't take up in an easier location; aren't cancer cells opportunistic SOB's? why would they go for the hard route up to my brain?

Dammit.... I keep remembering every headache, every mistake I've made here and there... but then I remind myself that I feel good. Maybe 2 months ago during the painful Valentine's Day this would be more believable but not now. And so it goes; I freak out, reassure myself and try to block it out of my mind.... in more ways than one.

And worse case if I need radiation I figure I can lose 50 IQ points and still be smarter than any boss I have ever had... and come to think of it, most of my employees... and gee; probably 100 points and I'd still be smarter than most of the men I've dated. Sorry guys... you know who you are... lol.

If I'm not dead, then I'm still a survivor...dammit

2009-04-15T17:07:00.000-07:00

Here I am today; trying not to think about the results of my PET/CT scan I had last Friday. If any spots light up as cancer then I'm back on chemo next week. This time exactly one year ago I was in the same circumstance; waiting for those test results. My life has come full circle.

Once again Prince Ahmed head of the Nuclear Medicine department administered my test. At least I was in the hands of the best. The test was relatively easy. It was hard not to compare it to the first time when I had to be rolled in a wheel chair to the bathroom because I coudn't walk. I proudly hiked up there myself this time. I couldn't read his face after the test and there were no clues. I won't know the results until I meet with Dr. Johnson on Friday.

I had my usual appointment with him to get my herceptin last Wednesday and I told him I still had pain in my ribs that was sort of scaring me. What could it be? What if it is cancer and I'm just sitting here not doing anything about it? So eventhough my tumor marker is normal and I haven't any other "sign"; we decided to scan. I asked him if it was cancer what would he recommend and he said "back to the taxol, it worked well for you before.." that's true. It did it's job and quickly. So I jokingly said "great another bald summer..." he laughed with me and said, "we have a lot of great medicines..... but unfortunately all of them cause hair loss". At least if it happens I'll be better prepared for it this time and Amber won't freak out finding a bag of hair in my bathroom.

He also asked for some new chest xrays. He isn't convinced it's cancer and said "it could be something else and xrays give us a different kind of view". So after my xray appointment I stopped at Corey the Chiropractor's office.

After he got over the shock of my new appearance; the gray hair throws people... I told him what was up and where it hurt. He poked around there a bit and said "oh it's one of your intestines creaping up there". He did some stuff and then asked if I felt like I was being coerced? This made me laugh because I have felt like I was being coerced by someone pretty much every day of my life that I remember... I think that is rather standard for a youngest child. But yeah, especially at that time I did feel like I was being pushed into something.

He said "that's it... it's making your digestive system push up into your ribs...so give up the feeling and it will stop". Sure enough after he completed his magical remedies which I'm sure have some big scientific sounding names that I don't remember; I stopped hurting.

I wish I could say that it stayed away forever, but it hasn't, it has returned, but not as bad. It was gone completely for a few days. And it is definitely not as bad as a month or so ago. I've been trying to work through that coerced feeling. That's tough. I still have so many times in my head when I have felt that. I'm tired of it. As of now; you are not going to get me to do something, no matter what it is.. or how you package it...or try to make it make sense to me..or try to guilt me... I'm not doing it unless I want to.

Except that chemo thing... I'll do it even if I don't want to... lol.

So I'm gonna dye my hair and get a new tattoo....

2009-03-30T11:06:00.000-07:00

Yesterday my son came running up to me with a large red heart he had cut out of construction paper for me. He said "here Mom I made this for you." Touched, I said "oh thank you.." and then he said "it has words on it, do you want to know what they say?" "yes" I said. So he says "It says Dear Mommy, I love you and I'm very happy you are going to stay here for a long time." Stunned, I had to think for a minute. I've been very careful to make sure he did not get an idea of how serious my illness is because I didn't want him to worry about potentially losing his Mom. So I asked him very gently "were you afraid I was going to leave?" "Yes" he says, "I thought you were going to be an angel." I said, "you did?" and he replies, "yes, I did but I'm glad you are going to be here a long time". So I ask "why did you think that? was it because I was so sick?" "No" he says, "it's because you are so old."

It was hard not to laugh, but I managed to contain myself. And so I said "I'm not that old honey, I'm older than most Moms, but not that old." "Oh" he says, then asks "when are people old enough to become angels?" I think for a minute and then say "well it's different for each person, but usually people are in their 70's or 80's and that's along time away for me". He says "how long?" I say "that means you will be married and have your own kids and house and everything". This comforts him and he says "oh good, I was worried about who would take care of me, but I'm glad you going to be here a long time."

It's true I had him at an older age than most; it was just a few months shy of my 41st birthday when he was born. And for awhile it wasn't that big of a thing. Once in while someone would make a mistake and call me his GrandMa. Here in Utah people start their families very young and my high-school peers have grandchildren his age. So it's understandable. But now after my year of illness; I look 10 years older; and that "Grandma" thing happens constantly.

Like I will be paying for our groceries and the check out clerk will say "oh I bet this star wars book is for your Grandma and these sprouts are for you?" and he will roll his eyes with impatience and look at me. Sometimes I explain; lately I haven't. It gets built upon when I have to stop running and playing with him because I'm worn out.

And my hair came in almost completely white. It has amused me thus far. I wanted to see how it turned out. It has darkened up a bit, it looks much like Jay Leno's hair did couple years ago before he went nearly all white... except I'm cuter of course. But the hair does it. I look like a grandma. I didn't think much of it and was thinking of growing a little longer and just seeing how it looked. But now I'm thinking I need to look a little younger and stop the grandma assumptions a little.

I don't want to be one of those people with really obviously dark hair that doesn't match their face either. So I'm thinking of colors. My sons say purple.

A week or so ago I got my usual round of anti-cancer drugs. I'm back on herceptin and I found that after being on it for a couple weeks I started feeling much better. Dr. Johnson believes it is due to the herceptin. So I probably started spitting out cancer cells again over Valentine's Day when I was off the wonder drug. That's scary. I'm dependent on the drug that beats up my heart. I'm hoping this time I don't get the heart reaction and I can just stay on it. Or I guess if I do we take a break from it again and then hope for the best and get back on it as soon as I heal. It's a lot to think about. But the idea here was to keep me alive and comfortable until someone comes up with a cure. Please whoever you are - get to work.

I was mulling all this over as the chemo nurse was preping my port for the needle... she asked how I was? So I told her that "I got really sick off herceptin, so I guess I will be on it all my life..." She in all seriousness very kindly said "well you have a beautiful port...it's nice, it gives good blood.." it was so cute and it made us both laugh. So I said "yes, it is lovely isn't it? I think I'll start wearing off the shoulder tops now that spring is coming and really show it off.." by that time we were giggling out of control.

But then I thought of it... hey, what if I got a tattoo around my port? How cool would that be? Like it could be the center of a flower, or a moon with a fairy on top, or a Celtic circle of life.... my mind went crazy dreamingly thinking of the possiblities. But I'm not sure you can do that.. I'd hate to mess it up and then have to have surgery to put in a new one. Maybe it could be around it somehow and not right on top of it? hmmmm... I'm still thinking about it. Next time I'm a little bored in the chemo room I'm going to ask Susan the super-nurse... that should get a reaction.

Why the pain?

2009-03-11T18:00:00.000-07:00

wow.. I did not realize so much time has gone by since I wrote on my blog. I've been recovering from Valentine's Day. Really! Recovering in every way. Physically, mentally, fiscally. And I have not been feeling very good. That's not good. I was in a ton of pain and extremely exhausted after Valentine's Day. I thought it would go away in a few days like the Valentine fatigue always does. But it has not.

I had an appointment with Dr. Johnson a week or so ago and got some really good news; my MUGA scan shows my heart to be functioning great now. So I got to go back on herceptin. But that good news added to my dismay; if it isn't my heart making me feel this bad, what is it?
When I explained my pain and tiredness to Dr. Johnson his face fell. Like he just got told he didn't pass a very important test that he was sure he did. The look on his face said a lot. He then asked me some questions about the pain etc. "Is it bone pain?" he says. Hmmmm... I don't know. How would I know? I tell him I think it's mostly muscular because I feel it after exertion. Like I vacumned the living room and then I'm sore for two days. He looks at me like I'm nuts. His fear is that during my time of herceptin cancer started resurrecting and is metastasizing to my bones. Oh crap.

In his way of thinking out loud; he said if so the question would be "was the treatment valid and just stopped to soon? or was it a complete failure?" Oh crap again...
But I said "what about my tumor marker?" "good, normal" he says. So of course I argue "wouldn't it be way up if that was the case"? He says "yes, but also maybe not.." Silent screams are going off in my head. He also points out though that I'm not anemic; patients with bone metasticies are anemic. So he says his plan for now is to put me back on herceptin and see how I am in three weeks and if he feels it necessary he will order a scan to see if indeed the cancer rose from the dead.

I tell him that I think I am just exhausted; you know like the rock stars get and have to go away for a few weeks? He laughs and says he "doesn't believe that exists and that he thinks I work much harder than a rock star."

After all this time I still had high blood pressure, it never went away again. So I went off to Dr. Alsup. He had not seen me in year. There was a lot of shock and awe when I strolled into his office. "Weren't you stage 4?" "Did you have a mastectomy, lumpectomy?" Once they got over the initial "what happened?" He began to prescribe stuff. He's one of those types. "here's a scrip for this, here's one for that, and this..." I came home armed with a new load of medications. Even one made from snake venom. Ha...take that blood pressure.

I've been adjusting to the new meds. It's taking a little time but it's a little better sometimes. I still have some things I need to fix that I'm sure is contributing to my pain. Like a trip to the dentist and the chiropractor would help a lot. I have those scheduled as well as the eye doc.
But even as I have been pinpointing all that; there is unexplained pain; especially around my rib cage. It hurts to breathe deeply, sneezing and yawning are torture.
Researching on the 'net I found there are two types of bone pain; metasitic and non-metasitic. Since I'm not anemic and have normal markers I think it is the latter. If not then I guess it's back to chemo or whatever Dr. Johnson deems necessary.

Today I had a short-lived break from pain. I take as much painkiller as allowed when I need it; which is all the time. But lately it's not taking all the pain away and is only making me feel sort of sick. But finally today after I got done working I sat down in my recliner while my son was building with his K'nex and relaxed and felt no pain! yay. So of course I dozed off.

Maybe 10 minutes went past before I awoke to a horrible banging. My delightful impatient son decided to wake me by banging on the chair. Both me and the cat flew at least a foot in the air. A hiss was heard and a slight scream. "Oh man...why did you do that?" I asked and he says "I wanted you to wake up and help me build". I said "but honey, you build all by yourself, you don't need my help." He says "yes, I know but I really enjoy the company." Sigh. The pain free state so far has lasted into the night. I'm hoping to get some good sleep.

I survived Valentine's Day!

2009-02-15T20:03:00.000-08:00

When I was in 6th grade the most unpopular boy, you know the one all the other boys pick on.. gave me a Valentine that professed profound love. I don't mean just a cute card where he signed his name, I mean a long handwritten note that said how much he "loved" me. It was placed in my Valentine box when no one was looking. I found it when we all got that time to open our Valentine's. I was frightened. I hurried and looked to see if anyone saw it and then hid it in my pocket. I was worried that if anyone saw it I would be picked on forever too.

I took it home without showing anyone and destroyed it. I was still mortified and afraid that someone saw it and I was really gonna get it the next day. I even faked sick so I could stay home. No one ever knew and eventually I felt safe at school again. I never said anything to the boy and thankfully he never mentioned it either.

Ever since then, I've been slightly uncomfortable with the whole Valentine routine. Did he get you the "right" thing? And that weird way women have of somehow making you the failure if he didn't step up with the great gift? What is that about? So of course now I run a business that bases it's entire bottom line on Valentine's Day. Would anything else make sense?

Valentine's Day for any florist means about a 1000% increase in business for about 3 days a year. Imagine what that is like... you need temps to come for just those days, the regular staff gets grumpy, clients get edgy. It's plain crazy. One year a whole local baseball team showed up to "help"...yep, eventually there was to much fun being had and the cops were called. Luckily none of them were arrested.

Last year I worked through Valentine's Day with pneumonia, a partially collasped lung and although I didn't know it at the time; rapidly growing cancer. I decided that this year I didn't want to work as hard and with the economy I didn't think there would be the orders anyway. So I scaled way back the number of orders I normally plan on doing.

I was surprised by a couple of things; first of all the orders poured in so fast I could not believe it. It was one of the fastest selling years we have had. Similar to the year the Wall Street Journal named us "best overall". Not only did we sell everything we had very early, but I estimate we turned away over 200 customers. If you were one of them.. sorry.

Secondly I was surprised how much harder it was for me physically. Actually it was easier for me last year with the pneumonia and all.. wow. I was weak. I could only work for about 2 hours and then I would have to lay down with my feet above my heart until the pain went away. Often I could barely walk after working for a day. I was constantly taking as much painkiller as I dared. And now I am so exhausted I can barely function. (But happily I did get to personally make the packages for my favorite rock star... thanks Tommy.)

I can only blame it on the heart problem and the bad circulation that it causes. When I am on my feet they start to swell and it's like all the blood goes there; when I sit, well I think it all goes in my... uh.. seat. If I spend more than a few minutes in any one position and then try to move it's difficult and painful.

This has to go away soon. It's making me nuts. I have another MUGA scan scheduled on next wednesday. I'm hoping for improvement, but I doubt it will be all better unless a lot happens in the next couple of days. I can tell it's somewhat better though. Before the V-day push I noticed that I didn't have as much pain in the mornings and I wasn't quite as tired all the time. I think the extra work just overloaded me.

My son is very patient through the whole Valentine week chaos. When he was 2 I invented the Valentine fairy. Who much like Santa brings treats and leaves them on the morning of the 14th. This helps a great deal. He looks forward to it and it gets him to bed earlier on the 13th when I'm so exhausted. This year as he was falling alseep and he thought I was in bed, I overheard him talking to the Valentine Fairy. He asked her to "make my Mom feel better, you know like normal people...." I fought back tears and vowed once again to get my old strength back.

46 is the new 62.5

2009-01-16T13:20:00.000-08:00

About 6 years ago or so I burned the bottoms of my feet. No it wasn't a fire-walk gone wrong... I was dancing. It was a beautiful summer day at Snowbird Utah. The dance stage was outside and uncovered. The floor was made of this bouncy black rubber material. Not realizing it I went on stage barefooted. It didn't feel so bad while I was dancing although I could tell it was hot. Afterwords when the adrenaline of performance wore off I was in tremendous pain. I had to walk up a long hill to get to my hotel room at the resort. Each step up that hill was horrendous. Pain from the bottom of my feet like you cannot imagine. By the time I got to the room they had already started to form blisters. I had several huge, silver dollar sized blisters on the balls of each foot.

I thought I would never feel such agony again. I'd learned my lesson, always check out the stage for foot safety before going on.. but now I wake up to that same type of pain every day.

I don't know why, I think perhaps it is from the herceptin heart problem and maybe I'm not getting good circulation during the night. It's excruciating when I first get up and stand, but then after moving about awhile I goes away. I find that I get stiff and painful after any laying down or sitting for more than a few mintues.

So it was on one of these mornings a few days ago that I hobbled to my computer and found one of those emails offering to tell you your "real age". That morning I felt about 80. I decided to give it a try.

Armed with very current information from my recent visit to the cancer clinic I took the test on the site honestly as I could. I didn't even think they would have a place to list cancer; but they did. You also list your treatments, how long ago you were diagnosed and a few other details.

After going through the test you click to send, and then wait... and wait. About a day later your "results" show up in your email box. I opened mine to find out that I was scored at 62.5! 62.5??? really?? Wow.

Of course now comes the genius of their program; you get to click back to their site and they have lots of options to lower your age by making purchases etc. I'm envious. I want to create a "know your love life" site where I score peoples relationships and then send them a low score and direct them back to JungleRoses.com where they are promised a better score if they buy. Sounds good eh? Then I can get on Oprah... again...lol.

62.5. Ugh. That hurts. I knew the cancer thing would throw it but I thought maybe 10 years... My Mom died at 70, my Dad was 82. My Dad never had cancer, my Mom did, so did all my Mom's sisters that have passed. Scary.

I'm sure my age would come down if I resolved a few things; like that mystery blood pressure reading. I have to admit I have not yet had it check again. And I could reduce my BMI. Ah well... I always felt like the oldest in my family anyway... even when I was only 10.

One good thing came from the test site. I got bounced to a site ran by the company that makes herceptin. I signed up as a patient taking the medicine and agreed to email "advice" from them and such. But much to my surprise I received a nice package in the mail that included a lot of information booklets on Herceptin and a pink tote bag that I think is cute enough to use as a purse...I think the approximately $1500.00 every three weeks that Herceptin costs makes it quite a status symbol.

If you want to take the test yourself go to www.realage.com. The Herceptin site is www.herceptin.com

"your heart needs a rest Londy..."

2008-12-31T21:35:00.000-08:00

That's what I heard today, "your heart needs a rest...". Yes I agree, my heart has been through a lot in the past 6 years or so... times of complete joy, times of total grief... yeah, it is tired.

But that's not what he meant. My recent MUGA scan showed that my heart is starting to not work as well as before. Most likely due to the herceptin of course. Herceptin can cause heart damage and symptoms like congestive heart failure. So after today's infusion I will be off herceptin for a couple of months.

Damn. Yes I know how important heart function is, but it also scares the crap out of me to go off it. I voiced my fears to Dr. Johnson "I'm afraid I'll start growing cancers again..." and he pointed out that I was "still on Tamoxifen right?" and that is very good at prevention. Then he added in that serious no-nonsense tone "but if you notice anything call me right away".
I also finally remembered to ask him what everyone asks me all the time... "how long do you take this drug?" He said he considers herceptin a "maintenance" drug... so in therory I could be on it all my life. Except for this heart thing of course.. I guess with periodic rests and if my heart recovers during those rests....hopefully I can be on it for a long, long time.

Naturally as soon as I could I googled it and found that I do have several of the indications of a herceptin heart reaction. Some of them I've passed off as part of my surgery recovery or lung problem or perhaps even my recent sinus infection.... I guess we shall see what problems disappear during the next couple of months.

I also had crazy-high blood pressure. I've had it nearly every time I've gone in for my chemo and my infusions without chemo. But I've also not had it when I had it checked at my OBGYN.... hmmm... curious.

I asked Susan, the chemo-nurse dynamo, (whom I realized today I now like more than my friends.. but that's a different blog...) if it could be a result of the heart problem and she said that the heart problem usually causes low blood pressure.

She mentioned some other causes such as gaining weight, stress and then she said "it might just be how you are now...this could be how you will be..." Hmmmm... okay. Both her and Dr. Johnson suggested monitoring it at times other than my treatment visits. Dr. Johnson said with a chuckle; that "most people's blood pressure goes up when the come to see the cancer doctor." Point taken.

So the next couple of months will be an interesting time. I'm going to monitor the blood pressure, keep track of changes in how I feel and in my body. I'm going to try the low-sodium diet thing and as for lowering my stress.. well... uh...sure...where do I even start?

There used to be a British comedy on the PBS station here. I don't remember what it was called but in it a couple buys a farm and tries to become "self sufficient". I used to fantasize about that. They live on food they grow on the land, heat with a fire burning heater, barter for services, bake their own bread and so on... and of course they have disapproving upper crust neighbors much like the Clampets did on Beverly Hillbillies. Much comedy follows... and it seemed so fun to me at times. I would think "yeah, I could do that..". So if you see me ditching my appliances for wood burning stoves and I start hang drying my laundry outside you'll know why....

Happy New Year!

He invented "snow swimming"

2008-12-27T20:05:00.001-08:00

Christmas ain't what it used to be...

2008-12-27T20:02:00.000-08:00

Christmas used to be a big deal. It used to mean a large family gathering at my parents house with a turkey dinner and all the trimmings. Sure my big sister would get bored a few hours into it all and need to go shopping or something.. anywhere... Dad would fuss over the dinner cooking and the cleaning up and make everyone feel like they weren't doing enough. There was some drinking and few outside smokers...a grandkid or two here and there. It was heaven. It may not have been appreciated by all of us at the time... or perhaps just not appreciated enough.

A few hours after dinner eveyone had to go somewhere; other families, drop in's for dessert, whatever. There was often a feeling of "oh we just have sooo much to do...". There wasn't enough enjoyment of the moment and now it's gone.

My parents are gone... there is no "home" to go home to "go home for Christmas" anymore. I suppose that happens in all families. Once the parent generation is gone it all changes. Everyone has their own "families" or somewhere else to be.

That is what I am still struggling to do; make Christmas for my family. My family of me, my son and our two cats. It's just us. It seems wrong; like I'm cheating my son out of the big joyus Christmas that you see in all the TV shows. I wish there was one kid's TV show with a single Mom. They either have suspiciously absent parents or some cozy bear family that lives in a tree.

This year had extra complications. It takes all the energy I've got to get through a normal day; forget fighting crowds and shopping. A lot of the traditions I had tried to build were just impossible for me to do; I couldn't put lights up outside or bake the endless cookies I did the last couple of years. Plus how do you buy for Santa when your child is with you? There was no way. At least I got my child's Father to put up the tree...

Then on about the 22nd I realized I had no gifts for my child... none. I had to do something fast or we would not get a visit from Santa.
In tears of desperation I called my big Brother Lee who jumped to the rescue. He braved a blizzard... really.. you should see the snow here...and went shopping at midnight. He then wrapped and organized all the gifts and in the wee hours of the snowy morning when most people are still sleeping; snuck them into the back of my truck.

I braved a new foot of snow at about 7a.m. to get them from the truck and sneak them into the garage so they could go under the tree that night. Without Lee we would have had no Christmas.

As I was sneaking the gifts into the house after my son finally went to sleep around 1am I realized that I forgot to mention to him to get something from Santa for me and the cats. So my stocking had a few odd things in it; batteries and a head-strap flashlight.. lol. And well.. I had to convince my son that the cats woke up early and ate all their gifts because Santa brought them such yummy treats. I'm not sure he believes me.

Some day when he is older I'll tell him about Lee and how Christmas came about this year. And I have a new appreciation for my Mom who used to stock away odd gifts "just in case". She kept a shelf of things that you could go to and find something for someone at any time. She was one smart lady.

A whole year?

2008-12-16T08:48:00.001-08:00

I've had a few people drop me emails and tell me to "keep writing"... lol. I guess I haven't posted to my blog as much lately. I intend to continue, it's just been a busy time for me. Especially now that we are again nanny-less. I don't get a lot of spare time.
I had a MUGA scan last Friday. That's to check my heart for problems that can be caused by herceptin. I left my son with his Father for a couple of hours while I went to have it done. I asked him to put up our Christmas tree because I didn't think I could manage it. We have an 8 foot tall, pretty, fake thing that came from my Father's cabin. It's heavy and tricky to put together. So I left the task to the two boys.
When I got home my son was running around excitedly putting decorations here and there; his Father was plopped in a chair - exhausted. Seriously, he looked like he was going to pass out. lol. A few hours of decorating and he looks like I do after a full day...
He was worried about the tree because my son had placed about 100 ornaments at his eye level of about 3-4 feet. He thought I might be mad about that because the tree didn't look "perfect". It made me smile. I told him "that happened last year too...to me it is perfect" and then I realized that I have been sick for an entire year.
Last year I had pneumonia at this time and entrusted the tree task to an employee. Who also was worried about the kid's eye level ornaments. Damn.. a whole year. A year of my life has been sucked up and derailed by cancer.
I often feel bad about that.. not for what I have missed out on, but what my son has missed. In the last year we made it to the park once, he didn't get to do karate or boxing or swimming like I promised. And playdates have been non-existant because of germ fears. There are so many places he wants to go and things he wants to do that I'm not quite strong enough for yet; it breaks my heart.
At my last infusion a week ago, I got some antibiotics for a sinus infection. That seems to have helped my energy level a lot. I must have been fighting an energy zapping infection. But I'm still not what I used to be... I wonder how much of it is me. By that I mean that I know I used to push myself, and do more than "normal" people. I've always been sort of crazy that way... worked 2 jobs, owned businesses, taught dance classes and gone to University all at the same time.. that sort of thing.
For me a normal day just a few years ago used to be working from 9-5 at Jungle Roses, then teaching 2 hour long dance classes and then perhaps working on my own choreography for another hour or so. I was extremely strong and could easily sustain 45 minutes of hard aerobic activity and still be able to carry on a conversation, not to mention flexibility and muscle strength. Those days are gone... I try to do a couple of moves now and then and my body backfires...
But there is a part of me that somehow even if it is irrational thinks I can do that again.. right now! It kind of makes me crazy... or well crazier..
Expecting less of myself is an interesting concept. Is it right to expect less of yourself? I have adjusted my expectations of other people, but not myself.
It brings up the whole "what's important in life..." lesson. Yes, I know that being with the people I love is the most important thing. But I also refuse to live in poverty or give up and just sit in an easy chair and tell my son to play by himself.
I've adjusted to some things though. Like right now; there is 6 inches of snow on my driveway and sidewalk. In past years I would be out there shoveling it... guess what? It ain't happenin today... lol.
But I feel like I should be out there doing it...

What's happening to my fingernails?? Yikes!

2008-12-04T09:42:00.001-08:00

Gee; I was so proud. Thinking I had avoided yet another chemotherapy side effect... nope. I guess I just was able to stop chemo so quickly that it hadn't had time to surface yet. Now that my finger and toe nails are growing out and the parts that had been damaged by the chemo are reaching about mid-way point.. holy crap! I lost one nail just below the half way down point... painful and frustrating. I tried nail-glueing it; that worked for a couple of days. I have been faithfully using the super nail hardener... sort of helps. But as of today I can see splits and cracks about half way down on 4 fingernails and 2 toes. wow.

I can work okay, but typing is a little sting here and there. When I work with the roses I just put floral tape on them and I can do just fine; although it looks a little funny. Bandaids fall off when they get soggy; the floral tape doesn't. But if any of my clients get a mysterious looking wad of floral tape in their box of roses...um.... it'd be from me. Just kidding... I'm really careful, that won't happen. I'm sure florists have millions of uses for floral tape, and viola' I have found a new one!

I can even see rings on my nails; like you count on a tree to determine age. One ring for each chemo treatment.

So you don't think I'm addicted to Lortab then?... Can I have some more??

2008-11-20T21:09:00.000-08:00

Yesterday I had my what is now my every 3 weeks routine; an infusion of anti-cancer drugs. I was looking forward to talking to Dr. Johnson. For the past couple of weeks I have been in pain... a strange type of pain I haven't felt before. It would wake me at night, stop me during the day and make me really crabby. It is like a throbbing, flu type ache in my legs and sometimes my arms too. If upon waking in the morning my Lortab had worn off and I was in pain it was difficult to walk. I was baffled and frightened.

I also noticed that my Lortab didn't last as long as before. It used to be that I only had to lick a Lortab and my pain would go away... okay maybe not quite that. But a year ago 1/4 of a Lortab 10 would have me pain free. Even free of that February 13th, 4 p.m. kind of pain that only a florist knows. While I was on chemo my need jumped from that to first 1/2 and then a whole pill to rid me of the pain. Then when I was in the hospital it jumped to 2 whole pills with supplementation for breakthrough pain...

After my surgery I was on 2 Lortab 10 every 6 hours. When I tried to taper off to 1 pill every 6 hours the problem began. I figured it's been over a month since the surgery now; I should be able to do without painkillers. My rationalization was backed up by the fact that I had exhausted my perscription from Dr. Goff weeks ago. I was using some from an early prescription from another Doctor. So you see... I started to think I was a Lortab addict.

I knew it wasn't cancer pain; and it wasn't localized... wtf? I also knew I was miserable and yesterday morning at 5 a.m. I took my last Lortab on a no longer refillable prescription. Slight panic set in...okay more than slight.. kind of huge panic.. Naturally I searched the 'net for withdrawl symptoms etc. I'm starting to think I'm going down the Rush Limbaugh path....

So I ask Dr. Johnson about all this and describe my pain. He says "I think you are just trying to wean off it too fast". whew. So then I ask if I can "have another presciption?" Oh so you don't think I'm addicted? Great! Can I have some more??? Sort of funny... but I was very relieved when he said "yes". He also suggested another non-narcotic pain killer to slowly change over to that I can take for a longer period of time if necessary. And so far it's all working well.

My tumor markers remain in the normal range and the dead tumor in my breast is shrinking! And I have learned that pain killers are not such a bad thing if you use them correctly... I'm not so afraid of them anymore Ahhhh.. only 2 more hours and I can take another......

Poets

2008-11-14T12:08:00.000-08:00

Jungle Roses often gets orders from "famous" people; actors, athletes, and the occasional rock star. We fill an unusual niche' in the marketplace.

But recently an order came through that really got my attention. We received an order from Maya Angelou. We had sent roses to her in the past from a few of our famous clients, but this was the first time she had ordered herself. She sent them to someone else notable; but the fact that she ordered herself really got me.

I gleefully mentioned it to a few people and got met with a blank stare... they could not remember who she was or why she was a big deal. I explained, "poet, author, Bill Clinton, amazing woman..." (insert the sound of crickets chirping). One of my business associates admitted to googling her to see who she was.. "oh yeah..., that's cool".. was the reply. I said, "Look even her message card is a beautiful phrase of poetry!"

I suppose maybe you have to be a bookish nerd like me and my friends to be overwhelmed by such a thing. I recall a story about someone in our circle of friends who was working at a UPS shipping facility a few years ago. She got assigned the task of packing and shipping an antique parking meter to Dr. Angelou. She was so excited that before she packed it she slipped a coin of her own in the meter so that something that was once hers would now be in Dr. Angelou's garden, or house or wherever the meter was destined for... she also had some explaining to do about why her package was "ticking" as it waited for pick up.

So I wish to give a big thank you to Dr. Angelou for making my day. There is a group of women here in Utah that you have inspired. I'm honored to have served you.

I think it's about time for another President to pick a poet Laureate. Are you listening President Elect Obama? I read that she is already writing one... but in true humble form doesn't expect to be asked. I think it would be great if she was..

Happy Halloween!

2008-11-03T08:53:00.000-08:00

After taking my son on our version of "trick or treating" Halloween night; I took him out to dinner. We left a bowl of candy on the doorstep and slipped away at about the time the visits from neighborhood kids were winding down. My son refuses to go trick or treating in the neighborhood because he hates dogs. I think every house in our neighborhood except us has a dog that is about eye level with him and most are not all that well trained. You can be guaranteed a greeting of vicious barking in your face upon knocking on any door around here. Instead we visited a local store that offered trick or treating throughout. That was fun.

As we were eating dinner I have to admit looking at him and thinking "geez; I amost wasn't here for this Halloween... what if I'm not here for the next one?" That's truly frightening. I hope that eventually those kind of thoughts go away.. that next year I'll not even think it, and the year after that and after that... it's a sobering thought. I'm looking forward to that day when I will forget that I had cancer. I wonder if that ever happens?

For some unknown reason my son has started talking about us "becoming angels at the same time". I have no idea why he suddenly started this line of conversation. Out of the blue he started telling me and a few other people; that "Mom and I will become angels at the same time and we will go to the same place together..." Whoa. I know my being in the hospital was scary for him. He definitely associates hospital stays with death. Perhaps this is some way for him to comfort himself that he won't be here alone? I don't know, but it's hard to hear and even harder to respond to...??? I hope that goes away soon too.

On a brighter note; my public blog is getting good response. We sold our first "Pink in the Jungle" package. And I formed a "partnership" with the Huntsman Cancer Foundation. All of my profits from the Pink in the Jungle Package will go to them and will be directed to breast cancer research. They are sending me brochures I can include in the packages if I want and also letting me put their logo on our website. That's cool. I'm looking for more ways to promote it. Due to a few technical glitches I sort of missed out on the October breast cancer month blitz. Ah well.... next year we will be well positioned.

Check out the Halloween photo. Here is a first glimpse of my post-chemo hair! It's been about 3 months now I think.... it came in a lot, lot grayer and it seems to be a lot straighter too. I'm getting used to it. I still wear hats a lot because my ears get cold... and my neck. I'll be buying turtle necks and scarves this winter!

"I'm through with you Londy.."

2008-10-22T10:54:00.000-07:00

I had my post surgery follow up with Dr. Goff on Monday. It took a lot of effort. He only takes early morning appointments. The nurses on the surgical floor gossiped to me that this was because he "was a Mormon Bishop and worked early in the morning so he could attend to church duties later.." I had to rise before the sun was up, shower, drive to the hospital, find a parking place and get an x-ray several hours before I normally rise. He wanted an x-ray right before he saw me. Okay.. the radiology department and his office are on opposite ends of the hospital... a long walk early in the morning. Great.

I got the required x-ray; no problem...and I managed to time it just right so that I arrived in Dr. Goff's waiting room moments before my appointment time. I was exhausted. Since I was driving myself I didn't take any lortab before I left, so make that exhausted, sleep deprived, hurting and somewhat impatient. After waiting for half an hour I inquired of the receptionist "how much longer?" She said it could be an hour. He hadn't returned from his hospital rounds yet and eventhough I was his first appointment that morning, two people arrived before me so she put them in exam rooms and I had to wait until they were seen. I told her I felt sick; like I may vomit and that I was afraid to re-schedule because I thought I had an infection. Her eyes got wide... "oh...." she says. I lied about the vomit part.. I was just in pain; but I have learned that vomit scares people. She offered to put me in an exam room and make me the first patient the doctor sees when he gets there. Fine.

I get in the exam room and I can overhear the doctor talking on the phone to an obviously distraught family member.... I forgave him. Gotta give him credit for talking time when he is behind and at the start of an incredibly busy day to help someone who is having a bad time. That and the dedication to his religious duties make me think the is a pretty unselfish guy. I decide to let him off easy.

I was serious about the infection thing though. One of my tube-holes is in a most unfortunate place; right where my bra sits on the side under my breast. What my sister Joan would refer to as "the pencil holder.." We once heard somewhere that the test to determine if you could go bra-less was to stick a pencil under your boob. If the pencil fell out you can go without a bra. This was so absurd to us because well.... we could put a whole office supply store under there without any droppage.

So this hole I believe, is infected. It hurts and starting the day before my appointment, was oozing crud. (Hope you are not reading this while eating lunch.) I also have tightness in my chest that is only relieved with a maximum dose of mucinex and periodic inhalation of my rescue asthma inhaler. I also from time to time nearly lose my voice or it sounds like I have a cold. The voice thing has been going on for a long time; since I started chemo. The other stuff started in the hospital.

The doc finally breezes into my room with an apology. He quickly brings my xray up and does a quick comparison with an xray taken in July. I have to admit my lungs now look amazing in comparison. Just a small spot down on the very left side that is blocked. He says by some fluid, maybe 100-200 cc's. Not much and that it may go away in time by itself. He pronounces this a huge sucess.

I tell him that I wasn't experiencing the instant relief I expected. He for the most part brushes that aside. Says that it takes awhile to "feel" like the new breathing is normal because there is soreness and it hurts, but the more active I become and the more I use the incentive spirometer the better it will get... um okay. What about the mucinex? He says just to keep taking it if I need it. What about the voice? this he doesn't know, but offers the explanation of "mucus getting stuck on my vocal cords from time to time".. yeah that could be... okay. He says to ask Dr. Johnson about it and if I can't get any resolution on it he would be happy to "refer you to a nose/throat guy who can stick a scope down there and.... " oh yuck... I'm so over "scopes". Maybe once I get breathing easier whatever is bugging me there will get coughed up or resolve itself. He concurs.

He then looks at the holes in my side; apologizes for the unfortunate placement of the one. He thinks if the gets the stiches out of them they will be fine. He pulls them, bandages me up and says "I think I'm through with you Londy. There's no reason for me to have to see you again."

So at this point in my life I have graduated pulmonology. I hope I never have to come back.

It's been a couple of days since that appointment and he was right. Things are healing better without the stiches. I still need the mucinex and from time to time my voice gets gravely. But I'm now up to between 2500 and 3000 on the spirometer. A huge gain from 1500 pre-surgery. And yesterday I actually made it all the way through a shopping trip at the grocery store. That's new. Before I had to send the nanny and my son while I waited in the car because I would get about 1/3 of the way through and nearly collapse. Yesterday I walked all the way through the store, shopped and loaded the car and I could breathe without huffing and puffing. Awesome!

As for what's bugging my lungs? I don't know. Corey the chiropractor says "fungus" and prescribed an immune building formula. I'm taking it. The Native American medicine man said I need "mare's milk". What? huh? you mean milk from a horse? yep that is what he means. I haven't taken that too seriously because of the yuck factor and a few other reasons. But Linda did. She has been visiting horse farms in the area in seach of a nursing horse that wouldn't mind giving me some milk. Linda is just cool like that. Imagine having the balls to stop at a strange horse farm, walk in, tell this story and ask if they have any milk? Only Linda can do that. BTW horse farms here are a huge zillion dollar business. So these aren't just little nearby farms she is visiting. These are huge operations. I've decided that if she really gets some I will only drink it after I see her do it and she is carefully observed for several days and we get a full medical history of the donating horse... lol.

20 days... shouldn't I be better now?

2008-10-16T11:42:00.000-07:00

It's now been about 20 days since my surgery. Not the instant relief I expected. I still feel like I am working very hard to breathe. I'm not sure why. I know there is progress. When I first went to respitory therapy before my surgery they said I was operating at 63% of my lung capacity. They showed me where this was on the "incentive spirometer". It was a mark of 1500 upon inhaling. I can now on occasion get it up to almost 2500, but it's hard work and everything has to be just right. Dr. Goff told me that I could be "doing aerobics the day I was released"...ummmm not exactly.. lol. I have my follow up appointment with him next Monday.
I have days where I feel really good and then my ambition gets the better of me and I fly around working like crazy.. only to wake up the next day exhausted and hurting all over. I think that is partly the painkillers; they make you feel better than you are and then it is easy to do stupid things.
I feel bad that Dr. Goff told Lee and Linda that I might only have a "couple of years"... oh man. That was right after surgery and he thought my scar tissue was some sort of cancer. He proclaimed to have "gotten most of it; and may have given her a couple of years..." He was positive it was cancer and had all sorts of hows and whys for them. They went through a weekend of hell. I had no idea. I can see though that this type of thing will could possibly come up in the future; any time I have a spot or bump or pimple... the first conclusion a doctor will come to is "cancer". I'm going to have to be tough to face that and fight for proper treatments etc. I'm rather peeved at all the times they tapped the fluid and didn't test it because "we have to assume that it is...".. it wasn't.

Our Day

2008-10-06T18:53:00.000-07:00

My son thinks it is time for me to update my blog and tell everyone how I am doing now that I'm home from the hospital.

First, he wants me to tell you about our wonderful nanny. She would like a new boyfriend. He must be tall, dark and handsome, with qualities like Prince William. I told him I wanted a new boyfriend too and he replied, "that's what you have me for Mom, I'm your boyfriend." So true; but if the universe wants to send a new tall, dark and handsome prince my way, that'd be okay.

Today was back to business. Thanks to Linda and my son's help we got Jungle Roses orders out without to much difficulty. I'm looking forward to the fall season and planning our holiday offerings. I'm also working on my "Pink in the Jungle" package with profits going to the Huntsman Cancer Center and am hoping to launch it within the next couple of weeks for breast cancer awareness month.

My son thinks everyone is updated now... lol. He wants to work on his science projects. I bought him a polymer lab from the discovery website. He mixed slime yesterday and today he wants to mix "goo." This should be fun. I love doing home school with him. It's amazing how much "school" can be fit into ordinary activities.

Hospital Photos

2008-09-30T18:06:00.000-07:00

He loved the cake; and the big construction machines that are adding onto the building.

Scar tissue? It’s just scar tissue???

2008-09-30T00:32:00.000-07:00

All of the tests came back. Nothing Dr. Goff biopsied was cancerous. It is just scar tissue. Just scar tissue!!!! Ha! I knew it, probably left there from my many episodes of pneumonia earlier this year. I'm so happy.

Dr. Goff read the report for the first time in front of me and one of my nurses. We all had tears in our eyes. Of course I wanted to run and jump and yell... but I have this damn tube poking out of my chest; it really restricts jumps for joy.

Soon word spread throughout the floor and a few hours later the nursing staff brought me a huge pink cake so I could have a celebration with my son when he gets here later on... that made me cry. They are all planning to come in when he gets here because they want to see his reaction to the cake; they even got his favorite kind. We decided to tell him it is just a party for Mom because "she is so special," since he doesn't know I am fighting cancer... I think that is fine.

I called Linda and asked her to bring up my camera so I can take pictures and post them later.

Never have surgery on a Friday

2008-09-29T07:25:00.000-07:00

I have decided to never have surgery on a Friday again; and that I will always ask my surgeon if he has vacation scheduled or any days off in the days following my procedure. When Dr. Goff finally showed up yesterday morning, all my problems got solved with one wave of his magic wand... duh. I feel stupid.

Yes, in just a brief moment he was able to solve my pain problems. I'm now on 2 Lortab 10s every 4 -6 hours. That was the magic formula. Why someone kept me on morphine shots every 2 hours all weekend is unknown and nobody will own up to it now. lol... and I have to admit that my mind is working much better now too.

What was actually in my pleural space is still a mystery. We won't know until we get all the reports back. He said "it is not what I would expect to find in this situation." which I understand as an intellectual way to say "I dunno... I've never seen this before." I speak that way; so I understand it. Language manipulators... you gotta watch out for us. He mentioned that we have to "assume" that it is cancer and maybe it just looks different because it has already been treated... I can tell he is curious; he wants to know. I suspect that he usually doesn't get patients post-chemo, so I think that explanation is very possible.

He said maybe today or tomorrow before they would pull the tubes. He wants to get the most lung expansion possible; and I soooo agree. Even though I can't wait to get home and be with my son, it would be a drag to go through all this and not get the total benefit... it's been too miserable.

Although, in a way I'm glad I'm sitting here zoned out on painkillers while watching the economic bloodbath... it's very scary for me. Seasonal businesses and luxury items like Jungle Roses will be really affected. While some financial problems don't touch my regular customers that much; a falling stock market does. I need to get strong and get back to work. I've already been walking a fine line with all that has been going on... I remember what our business was like after 9/11's stock market crash... that along with my health issues... whew... it's going to be a real challenge.

My first sponge bath...

2008-09-28T21:00:00.000-07:00

Nope, I've never had one before. It felt strangely good. A woman from the Ukraine did it. It was funny... just the accent alone made it amusing. If you can picture it, "you vant me do vash the back now yes?" They finally have my pain under control but I'm still coughing and it sounds like I have a Harley on my chest when I breathe.

Funny things are coming back to me now. Without knowing; I caused trouble for my surgeon. The OR nurse asked if I had been marked; you know how they mark you with an X with a sharpie to make sure they do the right side? So I said "yes, a girl in his office did it." Unbeknownst to me, that is against the hospital rules and the surgeon must mark you personally. This nurse was so pissed off that she made my surgeon come out of the OR to mark me himself. He was mad. He strode over to me with one of those mad fast walks, threw back the top of my gown on the shoulder and then with a ball point pen he roughly drew a small X in the same spot as the sharpie X. He then said, "I marked her myself, happy now?" Then he turned away and walked out in a huff. The nurse had a huge grin of satisfaction; I had a pissed off surgeon. Good thing I didn't tell her that I interrupted their lunch and a girl marked me in the hallway while holding a plate of Chinese food.

This left everyone in the pre-op room with gaping mouths and a tad bit nervous. Especially the 2 guys that were wheeling me in... so what happens? As they take off with me they get wrapped up in the TV cord and start to pull it off the wall. It doesn't come all the way off though; but that's because the weight of the gurney and me managed to sever the cord before the fall could happen. So we destroyed a hospital TV.

As I was waking up in recovery I was having dream in which my son was showing me something, the details are sketchy. But it was some new idea he had come up with that made us millions... I'm going to start paying attention to all his ideas... lol.

My recovery nurse is a breast cancer survivor. And we spent my recovery time sharing chemo stories. She was really sweet. It's mind boggling. I have met so many people who have either had cancer or know someone close that has... it's a disease that affects so many people. In some cases people refer to it like it's a root canal or something... you know by saying, "well when my grandmother had her breast cancer...” Odd.

This is so freakin’ miserable...

2008-09-28T10:34:00.000-07:00

They haven't been able to control my pain... I'm so miserable. Yesterday they got it controlled but my nurse got in trouble because he had overdosed me on Tylenol. Rats. So now they have me on Percalone, which I had never heard of; it's a Percaset minus the Tylenol. But that hasn't been working so they are giving me shots of morphine every two hours. And on top of that I'm nauseated and keep coughing. Every time I cough it hurts like hell.

I still haven't seen my surgeon, Dr Goff. Everyone here says my chest tube is ready to come out—except my surgeon's partner, who is on call for Dr. Goff, who obviously doesn't want to get his hands dirty over the weekend and said "no," that we had to wait until Dr. Goff came back on Monday. He came in, read the number on the unit that the fluid collects in and he read it wrong; the nurse even pointed this out to him and he brushed her off and said "oh this takes 3 or 4 days." I wanted to punch him.

So maybe tomorrow... I hope so; I can't stand much more of this. Sorry to be so negative; but pain sends a positive attitude out the window fast.

Sorry I stepped on that hose going to your lungs Mom...

2008-09-26T21:16:00.000-07:00

Here I am. I made it through the surgery and I'm now recovering. It's been quite a journey. I have not yet met with my surgeon; but he told Lee and Linda that things went well. He found some "patches" that he is going to biopsy; although all the tests they have done so far on it are "inconclusive." He has ordered some more testing but the results won't be back for a week or so.

There is pain; but it's tolerable. The really cool thing is that the hospital now has "room service." No kidding. You get a full scale restaurant menu to pick from. It's so nice... until you get the food and you realize… ohhhh yeah; it's still hospital food... lol. But it's okay.

My respiratory therapy is going well. I'm already up to what my function was before the surgery. And I seem to be draining well... I'm hoping to go home Monday or Tuesday.

My son visited this afternoon and checked everything out. He is very curious about everything; all the equipment and what my blood pressure is... so cute. It's hard for me to be away from him. I can't begin to explain how much I miss him.

I have actually spent the day reading and watching TV. Something I haven't done in years. I even watched the debate tonight. It's boring. I miss watching Noggin... lol.

"Did they git it awl?"

2008-09-17T20:45:00.000-07:00

I just finished our home school for today. One of the greatest things I think about home schooling is that you can do it when the mood strikes... or in my case when Mom wakes up from the Benadryl she got in her cancer infusion. I'm so happy my son is beginning to read again. At the age of 3 he was reading at a beginning 1st grade level, but felt severely abnormal because the other kids could not, so after a poor school experience, he stopped reading and pretended he couldn't. I knew he was. I would see him do it and holy crap he zips around the internet like a whiz... finally now, at age 5 ½, he isn't pretending anymore and has picked up where he left off and progressing quickly. He is now entertaining himself with a video... I don't know how long that will last so this may be a short update.

Since I have been off chemo for many weeks now I have started to venture out into the community a little more. And I'm finding it hard to explain. I know people are trying to be nice, and trying to make themselves feel better... but man, I am so tired of the question "Did they git it awl?" or the sometimes more positively expressed, "they got it all and everything’s fine right?" I don't know what to say. I know people are used to that idea that you get surgery and they "git it all" and then you get chemo just in case "they didn't git it awl" and then radiation "fer certain." I try to explain, "Well... um... we killed it all... I have a dead tumor in my breast." This of course, results in a slow blink of the eyes followed by a glance at my breast as if they can see it... that's kinda funny.

That gets follow up with "are they going to take it out?" and I say "no." "It's fine to have a dead tumor in your body, no big deal." I've been asked if it will come back to life..."no, once a cell is dead, it's dead." That kind of thing only happens in the bible. I don't say that bible thing; but ohhhh I want to say it. Then I get "so you aren't having radiation or surgery or anything?" Nope. But then I am having that lung thing done, and I have to continue the fight to make sure I never get it back, but… oh hell... at that point I just don't want to explain anymore.

I know part of it is that people want some reassurance that, even though they don't think this could ever happen to them, if it did; it's fixable. And hearing that from me takes some of that fear away and reassures them. Yeah, I get that... cancer is freakin' scary. It's made my most horrible nightmares very real.

And to be honest there are days I don't quite understand it either. I have had this conversation in many places, the bank, the store, here and there. It's very hard to have it in front of my son. So I have decided just to say, "Yes. They got it aaaawwwllll." And in my mind I know that we killed it all. And when they say, "you don't have to have surgery or radiation?" I'm saying "no, I'm a miracle of modern medicine."

I often describe, with much affection, one of my older sisters this way when people would ask why we didn't look alike. I would say "she's a miracle of modern medicine." It would take a minute and then they would laugh as they realized the secret to her physical perfection... so touche'. Now we are both modern medical miracles!

My son is over his video now. He just brought me a book he is studying on volcanoes and we read how a volcano will have it's most violet eruptions right before and during a full moon. I don't know who is more fascinated with this fact... me or him?

Sunday Update

2008-09-14T11:02:00.000-07:00

Ahhhh… Sunday mornings, my time to catch up on blogs and contemplate life. It's also one of the rare times I have alone. Our nanny goes to church (yes, really) and my son sleeps a little late. It's just me and the cats, by ourselves for a little while.

I had yet another thorocentesis this week. Yep, the needle in the back. Another liter and half of beer-looking fluid. At least this time it took 3 times longer to accumulate. And wow... this was the most painful recovery from it to date. I'm still sore. When I breathe in fully it hurts and still makes that crackly sound.

I scheduled the talc pleurodesis for the 26th. I'm hoping for a short, 3 day hospital stay; but I know I have to prepare for longer. So the next couple of weeks will be a lot of work for me. And yes it's true; I will be continuing the tradition as a member of the Child family hospitalized at the end of September.

I also blew my knees out last weekend. I have off and on had problems with mild arthritis over the past 10 years or so. Last weekend I was thrilled to feel somewhat functional and I spent the two days playing with my son. We played soccer, tag and continuing with his entrepreneurial enthusiasm, he offered to wash the car—for a small fee of course; a job that required a lot of my help. He was thrilled to have his old Mom back.

When I woke up Monday me knees were swollen up to the appearance of a medium ripe cantaloupe. I hobbled around all week. I iced and elevated when I could. Today they are much better. During this problem I recalled what I used to do before to "fix" it; a lot of ibuprofen.

Being cautious I searched and found that ibuprofen isn't recommended with my medications. During that search I found a wonderful article on Zometa. Something I hadn't read before. An Austrailian test found that use of Zometa, in the same protocol that I am on, reduced the reoccurrence of metasitic breast cancer in pre-menopausal women (got all that...that's me!) by 2/3rds. 2/3rds!!!! Now that is a statistic I can get behind. Awesome.

Forks are Extra

2008-09-07T04:50:00.000-07:00

I now believe my son to be an economic genius. I think he will rival Bill Gates one day in shrewd business savvy. I knew he had a gift for math, but now I can't wait to start teaching him more economic and financial things. It should be fun; I'm glad I got so much education in those areas myself. Now I have someone to teach it all to.

Here's what happened; about 2 hours after he moved into his new "apartment" it dawned on him that his plan had one big flaw. He didn't have a fridge and thus no place to store food. So he came back down and proposed a swap. Still not giving up, he suggested that he would move downstairs and make the kitchen/dining/family area his apartment and I could live upstairs in the bedrooms. He then embraced this idea with much enthusiasm as he also realized that gave him access to the TV and internet... lol.

After much discussion I got him to understand that these areas are "family" areas and belong to everyone and if he wanted to use them he had to agree to become part of the family again. He thought about it for a long time though, so I told him that maybe when he was older—like 10 or so—I would build him a bedroom downstairs and he could live there and my bedroom could be upstairs. His eyes danced with glee. I had planned to do that anyway. His room upstairs is tiny and right next to mine; eventually he will need more space. That was the deal closer, he agreed to be part of the family again.

Then I gave it some thought and decided that it might be a good time to do some more educating about money and how it all works. So I suggested to him that he could "earn" enough money to buy the ball he wanted. He was perplexed at first and asked "can you find a job for a 5 year old Mom?" I explained that since the next day was the nanny's day off he could do some of her work and I would pay him for it. He loved the idea. The next day he loaded the dishwasher himself, swept the floor, helped me with some Jungle Roses things and even made me lunch all by himself... and yes, it was not only edible, it was tasty. He got enough money to buy 2 balls he wanted.

We went back to the store and he picked out the balls, but noticed that they now had the Halloween decorations on display. We both love Halloween and he had to "check them out." I didn't see it, but they had strung a wire across the top of the isle that had a motion controlled ghostly thing that slid across it when someone walked down the isle. Yep, you know it. It brushed against my now bare neck in the back and I let out a blood boiling scream. Much to my son's delight; he thought that was the coolest thing ever!

When we got back home he added the balls to the collection he already has and explained that he "needed" those because they were a different color and questioned me with a "now do you understand Mom?" I said "okay" …sigh. He then told me that he wanted to keep working so he could make enough money to go back and buy the ghost that had scared me so much. He even showed me where he plans to hang it on the front porch. Sounds good to me, I can use the help too.

He made a list of jobs to do the next day. Included, of course, was making me lunch. He is quite the little Wolf Gang Puck. He loves to cook. And I found he especially likes to make things for me that he thinks are yucky, like salad. That day he made me a huge salad; even tossed it with dressing for me and the works. It looked wonderful. He brought it to me with water and curiously… a tiny spoon. I walked back into the kitchen and said "I need a fork." He blocked the silverware drawer with his stepstool and thus I needed him to move in order to get one. He said, "Mom, forks are 2 dollars." "What?" I said with surprise and a little bit of awe. He says "spoons are free, forks are 2 dollars." I about fell over. My 5 year old son somehow instinctively figured out the economic principle of scarcity and demand all on his own... I'm thrilled... lol

I paid the 2 extra dollars and ate my wonderful salad. By 10 I'm hoping to make him Vice President of Jungle Roses... he's bound to want his own office though and, no doubt, his own fridge.

We all must pay the rent somehow... right?

2008-08-30T07:32:00.000-07:00

My son is mad at me. We fought over a ball in a store. I believe he has plenty of balls... no pun intended... he thought he needed one more. When we got home he announced to me that he was moving into his room, that is it now to be considered his "apartment" and we live separately. He is moving things in there now that he thinks he will need. I could not resist; I asked him how he plans to pay his rent. He didn't know what rent was, so I explained. He thought that apartments were where people went who could not pay for houses. The rent idea disappointed him for a minute. He had to think hard about it. Then he brightened and said that he plans on creating his own roses and his own packages to send to people... and with that he continued moving things into his room. Did I mention he is 5? What is he going to do when he is 16?

Things are progressing with my treatments. So far so good... my tumor marker has stayed at 19, anything under 40 is considered "normal." Though I don't think even knowing what your tumor marker is should be considered anything remotely "normal." So, we proceeded this week with the Herceptin and Zometa. Unfortunately, I found that the new combination makes me feel like I have the flu for a few days—nothing near as bad as the Taxol—but still flu-ish. Plus, I lose a couple of days because of the heavy Benadryl they have to give you for the Herceptin. It knocks me out and makes it hard for me to concentrate. On Thursday I had to reset my password 3 different times because I could not remember it from minute to minute.

I also met with the lung specialist to go over having the procedure done to remedy my fluid problem. At first he didn't recognize me from our initial meeting. I refreshed his memory by saying, "oh, the last time you saw me I had hair and cancer." He laughed… and remembered. I could tell he was taken back a bit by the fact that I was doing so well. Just a look and one of those extra-effort , long slow, blinks of the eyes people do... then a slight turning away from my gaze as he said with a slight grin, "yes, I remember you now... wow... I'm glad it's worked so well for you."

The procedure sounds easy enough. A small scope, small incision; they look around some, pick off anything that looks like it could be cancerous and then blow some sort of magic powder into the space that seals it up. The only bad thing is that it can require anywhere from a 3 to 10+ day hospital stay. It all depends on how fast the lungs stop draining fluid. Some people stop in 3 days; some stop in 10 and anywhere in between. Some people it doesn't work at all. He thinks I'm a good candidate though and that it would work for me. I'm terrified to pick up and leave everything here for a potential 10 day hospital stay. Especially with my son taking his own apartment... lol.

Kidding aside; that makes it hard. It means potentially that long away from my business whose survival right now is shaky. My illness, the seasonal summer slow down and economy, which seems to now be causing even my customers to buy more conservatively, are taking a toll. We are starting to have our usual fall upsurge in business; but it feels like the wrong time to take off. Plus, I have never been away from my son for a night. Actually before this he had never even had a babysitter. That's my fault. I never found anyone or anything that I wanted to do more than be with him. In his first 2 years I had a nanny and on occasion I would leave him with her while I ran errands; that's about it. I haven't dated, He hasn't spent the weekends with Dad or anything like that. It's been me and him. He's never been away from home for the night without me, never had me gone for the night. And until recently he had never woke in the morning without me here. Things change. It scares me. I don't want it to be scary for him.

Linda can run things for me. But that is a lot of pressure to put on her especially with her own physical problems going on now. And I can tell the thought of it frightens the new nanny. Though she is handling things so well... I can't blame her. Being "in charge" and alone that long would be a challenge. So I'm putting it on hold for just a couple of weeks while I can hopefully stabilize the situation some.

The lung doctor also finally explained some things to me that had been puzzling me. I didn't understand how I could be still accumulating fluid. He said that our bodies create a lot of fluid all the time, and that our lymphatic system takes care of it. But if some of our lymph nodes get blocked up with cancer; the fluid has to go somewhere. And in my case it went to the pleural space. The pleural space is the space between your lung and the case that the lungs rest in; there is probably a better way to explain it, but I can't think of it. It sounds like a sneaky space for fluid to creep into if things aren't right. So I questioned why they never found cancer in that fluid and he said that there may indeed be no cancer there; just fluid that had no where else to go.

I have noticed a great slow down in the accumulation now. My lymph glands must be working. It's been more than 6 weeks since I last had the fluid drained and Dr. Johnson said he doesn't think I have much accumulated there. But I have had some breathing difficulties. It may be uncontrolled asthma or something else. Bottom line is I need to have the procedure done to prevent the problem, should I the cancer come back again. Ugh... there are lots of things now that I will be doing "just in case." I'm planning on getting my teeth overhauled, getting my body in the best physical condition I can, my diet healthy, all those things you are supposed to do to prevent cancer, I have to do with ferocity.

My son has now moved nearly everything he could drag from our living room up the stairs to his bedroom. He stopped long enough to inform me that he plans on staying in his room for the next 5000 days. I said "okay." He keeps picking things up hoping I will notice. He took my purse. It's so hard not to laugh. Oh man, what do I do now? Hmmm? Will somebody tell me that? Do I wait for him to eventually come out of his room? Send him a bill for rent?

I am getting a little stronger day by day. I'm up to about 8 minutes on my elliptical. That's not a lot; but considering not too long ago I could barely stand for more than a few moments... I'm thrilled. I found 2 books that finally made sense to me. One is called Healing Cancer through Nutrition and isn't so radical that you have to give up western medicine to follow their guidelines. It mostly goes into a low glycemic plan that is very doable for me. I have even managed to lose my 1 pound per week! And I also found a book called Cancer Fitness, which gives great advice on getting strong again during and after treatments. It is written by an oncology nurse, who is a breast cancer survivor herself. She has been studying and developing programs for people that are cancer survivors who want to remain physically strong. I found it very encouraging.

My hair is growing back. And wow… does it itch. Crazy. The hair on my head is about 1/4 to 1/2 inch long now. It is 50/50 white and black I'd say. When I look at myself in the mirror now I think I've aged through all this. I look like one of those "great looking for 50-something" women. I'm 46. I think I've aged 10 years. I almost have eyebrows back too!

Eventually my son is going to get tired of this right? He's carried several books up there now and even some boxes of things I was going to eBay... he just came down and said he will be done moving things in a couple of hours. Then he grabbed my grocery list and a clean shirt and headed back up. On his way he announced back to me that "I took your purse Mom, so I'll have plenty of money." Oh... I'm sooo in trouble. Help me.

For entertainment purposes only.

2008-08-17T10:50:00.000-07:00

Here are some odd things I have not yet put in my blogs... for entertainment purposes only:

* Shortly after I was diagnosed I had a blessing from a Native American Medicine Man. In this blessing he said, among other things, that I would have many Elders showing from spirit to help me get well the next night. And when they did I was supposed to show them out and give them tobacco. I sort of forgot about it. The next night our lights started dimming and going bright over and over again, so much so, it scared my son. After a minute I though "oh... it's them..." and so when the lights would dim I would go open the door and say "here's some tobacco for you." I felt sort of stupid because I had no tobacco. One time I was sort of laughing at myself and said "here's the door and I really don't have any tobacco." I swear I heard a voice say, "We know, we brought our own." This continued through the night. There was quite a crowd on my front lawn. My son still sleeps with a flashlight by his bed.

* While waiting for my diagnosis I consulted 2 psychics that I know, and consider friends. Both said I did not have cancer and that they thought it was some sort of infection. I recently read that they are now exploring research approaching cancer as an infection.

* Once, while giving my son a bath, he said, out of the blue, "Mom will we ever be the same?" I didn't know what he meant. So I said "do you mean will we both be grown-ups? Or will we both be boys? What do you mean?" He says "I mean like we used to be when you were not sick and you could run and play with me... and our house was clean."

* None of my doctors are cute enough to be crush worthy. This makes me feel cheated somehow.

* My son used to be a big geography buff. For a long time I had a map of North America on the bathroom wall to entertain him while he took a bath. I used to sometimes catch a glimpse of it in the mirror backwards... and I often thought it said Cancer instead of Canada. Freaky.

* In 1971 President Richard Nixon declared a war on cancer. He guaranteed the American people a cure in 5 years. For some reason, this fact makes me laugh.

* I get this magazine called Family Fun. It has a "Mother of the Month" in it every month. I want to be nominated for the sole purpose of being able to answer the question, "What is your time saving tip for busy Moms?" with "I save about 45 minutes per day by not having hair." Then on the question, "What is your money saving tip?" I want to answer, "See that hair thing..."

* Shortly after my first chemo treatment my father came to me in a dream. In the dream I was very upset and my father had come to comfort me. I asked him what was going to happen and he said, "don't worry, it might give you some trouble for 4 or 5 years and then you will be okay." He then took me in his arms and I cried for a long time while he held me. When I woke up, I remembered the dream. I was very comforted by it; but at first I was upset about that 4 or 5 year thing... it seemed like such a long time. But then I got over it and realized that I can put up with 4 or 5 years and then be fine. I was actually quite happy about it. Interestingly I was on chemo for 4 or 5 months...

* When it became clear that I was going to have to spend some time lying in bed recuperating, I asked Linda to buy one of those big pillows that makes you sit up in bed. You know the ones with the arms on the side and a backrest. She came back with a giant dog bed—because she's cool like that. She said she couldn't find anything like I was talking about so she hoped the big dog bed would work. It did, as long as I folded it in half and then propped some more pillows on it. It actually worked quite well... then she finally appeared with the appropriate pillow a few weeks ago with a triumphant "look what I found!" She would like the dog bed to give to her dog now. I'm thinking of sending it to John Edwards. What do you think?

An up to date article on stage IV breast cancer survivors.

2008-08-10T03:51:00.000-07:00

http://www.curetoday.com/currentissue/features/feature1/index.html

While this article focuses on 3 women who had a "recurrence" that put them at stage 4, I still found it a great read. If you care to learn more about my disease and have the inclination; it's a fairly entertaining, short and uplifting article. I'm one of the 5% that had the initial diagnosis at stage 4; that makes me one of about 7500. That's pretty rare eh? Damn. I bet I'm a statistic in someone’s study somewhere and probably don't even know it. Ah well... that's okay... because it's working.

I really liked the last quote about making sure the last check bounces. It made me laugh and at first I was like "yeah, yeah..." but then I remembered; oh noooo... I need to leave something behind for my son... unless of course he reaches his economic potential before my demise... wow... that's the new prayer. To the universe and powers that be -> "I intend to live a life of abundance and live long enough to support my son until he is able to on his own." Whew... that's heavy.

"Let me be clear Londy, it’s still there..."

2008-08-06T15:03:00.000-07:00

I had my first "chemo" today without chemo. I know that doesn't make sense but I'm so used to calling it that and I don't know what else to call it. Anti-Cancer drug infusion is just too long...

I received Herceptin and a new one call Zometa. The Zometa is preventative, to make sure I have strong bones. I don’t have any bone problems now; it is to help ensure I don't have them down the road.

And speaking of down the road, sigh, I had an appointment with the lung specialist a week ago. He was running 2 hours behind. So I rescheduled for next week. I also had another painful thorocentisis. And after the pain and effects wore off I only had a couple of days where I was breathing well before I felt the fluid coming back again.

This puzzled me. "If it's the cancer that's causing it, and the cancer is dead; why is it coming back?" ...was the question I posed to Dr. Johnson. I could tell this sort of threw him for a minute. Maybe he was surprised by the question; maybe he was fearful that I wouldn't go as aggressively after treatment... I don't know. But his answer, and the seriousness with which he said it, knocked me down several rungs on the happiness ladder. As he turned, adjusted his glasses and gave me a stern look, much like the high-school principal explaining to me how "everyone has to follow the rules," he says, "Let me be clear Londy, it's still there." Feel the air going out of the balloon... deflating... ah... shit. Oh yeah... I know.

So in my usual debater mode I say, "oh yeah I know, but it's not active. It's not seeking residence in other areas of my body, so how come?" He says, "yes, you are right, it stands to reason that it would not create fluid there again, but I think you should still have the procedure done to prevent it... we are giving you the best drugs there are, to give you the longest and best quality of life we can, but it's still there." Deflate, deflate. Shit. It feels like that time I was told the attendance policy applied to me like it did everyone else, and even though I had straight A's, I still had to go to class.

Bummer. I know that. Okay... will do. On the upside; he told me I am free to diet now as long as I only lose about a pound a week. And exercise is okay; but he doesn't want me to do anything too aerobic until the lung issue is properly addressed. All good. BTW; he listened to my lungs and said it sounded like maybe a tiny diminishment of capacity on my one lung, but actually, rather good. Maybe I'm not used to using my full capacity? It will all be for the lung specialist to address next week.

My infusion only took an hour. But it left me very, very sleepy and unable to concentrate. I tried to do some things after I got home and it was just a comedy. Before I had the steroids to pump me up before the treatment and then they would give me Benadryl during it. One counteracted the other. This time I only got the huge dose of Benadryl... wow... like being drunk. but not any fun. It felt weird. But as I was told; Herceptin has few, if any, side effects. So once the Benadryl wears off I should be doing good.

We picked up the new nanny last night. She is so far—amazing. I think this is going to work. My son really likes her and she has clicked in with his mind and playfulness... it's perfect. Hopefully with her help I can get things more back to "normal." Whatever "normal" is going to be for us now.

Yeah... normal. Sounds good eh?

I fell into a big bucket this time...

2008-07-27T02:39:00.000-07:00

I haven't blogged much lately. There seems to be problems with the blog system. I've written a couple of blogs only to have them disappear into a black hole.

Things have been very interesting since I received my good news. Much like the unexpected responses I received from people around me when I was diagnosed—I received unexpected responses to the good news too. I think that until you have lived through something like this; you just have no idea what it's like. I realize that some people just got their mind wrapped around the "stage 4, she could die" reality; only to be hit with a "the cancer is dead... she's gonna live" reality.

I had good response to the medicine, and it was fast. I could tell even my oncologist was a little surprised. Happy, pleased, proud... and just a little surprised. I was surprised too. I expected good results and I knew I was responding. I expected some sort of "half-gone... it's working, a few more taxol... surgery... blah, blah, blah." The completely clean PET scan brought tears of joy to my eyes. I can understand why it might cause some disbelief and "wft?" in people who are not around day to day and perhaps don't share my belief in miracles, the power of intention and magical red twizzlers.

I had some questions from people upon hearing the good news, along the lines of "well then the original diagnosis must be wrong." Nope. No mistakes there. And a few "did I misunderstand, didn't you have..." Yes. I did. And no, you didn't misunderstand. Along with a few "well you were very determined," as if I somehow killed the cancer myself through sheer tenacity and stubbornness. There were also a few comments that left me with a feeling of "gee are they upset I had good news?" Like I had committed some crime and got off too easy... um... okay. Yes, I am lucky. I know I am lucky. I once had one of my former bosses tell me that I had the "uncanny ability to fall into a bucket of shit and come out smelling like a rose." Yep. That's me. Ironic I sell roses now, eh? I just wish I would quit falling into that damn bucket of shit.

Here's the thing; I feel like the big battle was won, but the war isn't exactly over. I still have cancer in my body—dead cancer. That, in time, will diminish and go away. There is still medicine to be taken and I will be on anti-cancer medications for, most likely, the rest of my life. I will still be making trips to the hospital for Herceptin, which has to be taken intravenously for months to come. I still need to have my lung fixed so the fluid stops accumulating. I still need to get my strength back. I've got a long road ahead. I've stopped the freight train that was speeding at me; now I have to continue the hike up the mountain.

And speaking of mountains; I still have that mountain of medical bills to figure out...holy crap! Chemo ain't cheap. Nearest I can tell each treatment I had was in the 12K range. PET/CT scans run about 6K, I also have had many, many x-rays, procedures... wow... it's mind boggling. The stack of bills has grown beyond control and I'm already being called by collection agencies for some of the first procedures. Yikes! And it's going to be never ending. I have 80/20 insurance. I have to start selling a lot of roses—fast.

There is still a possibility that cancer will pop up somewhere else in my body and I will be constantly monitored for just that occurrence. That is what stage 4 is; it's not curable. It's manageable. And until something comes along that is a valid "cure" I will remain stage 4—incurable. There are a lot of people out there just me like; incurable—waiting for the cure. I'm going to be happily, joyfully, gleefully and thankfully smelling like a rose while I wait.

Negative? Whachyamean negative?

2008-07-15T12:03:00.000-07:00

I wrote this amazing blog today while I was getting chemo. I tried to add a picture and whamo... error. It would not post and it lost my entire blog somewhere.

So I'm going to do a fast update in hopes that it is found sometime soon because I know a few of you are waiting for this news.

I got the results of my CT/PET scan today. And for the first time I can even remember, someone said I was "negative." Not a word that gets used around me very often. Usually I'm the optimist or just unrealistic. Today I was "negative."

My PET scan showed nothing. It was NEGATIVE!!!! In that good way. My cancer had no response to the test. It's still there in structure, but it is not growing, not active, pretty much dead. The CT scan showed the structures there but greatly diminished.

So today was my last chemo. I no longer will have the Taxol. The Taxol is the one that causes all the side effects. So no more drop in white blood cells and high risk of infection. I can go to the dentist, maybe get that lung problem fixed, the yeast in my eyes will go away, the sore throats will go away, the aches will go away and my hair will come back. I can diet off the weight I've gained during chemo, exercise to get my strength back. TahDah!

I will continue on Herceptin for awhile and start on anti-estrogen drugs. No surgery, no radiation. Dr. Johnson wants to see how much we can shrink and sees no need for anything like that for now. If something changes and it wakes up again and gets active that may change. For now we want to see how much more we can eliminate with the drugs. I asked him if it ever goes completely away with just the drugs and he said "yes, but not very often." I told him I intend to be one of those people. He smiled and said "okay."

I asked about that word we are used to hearing, "remission," and he explained that there are two types of remission. Complete remission and partial remission. Complete remission is when there is no cancer left to see on a CT scan; like it never happened. Partial is when you have the structure there, but no activity. So I'm in partial remission. I could also tell he didn't like to use the word remission too much.

So now what I need to do is concentrate on getting the dormant cancer to leave my body. I'm not sure how that happens. The body must take the dead cancer cells away and get rid of them... I'll do whatever it takes.

And like my sister, who surprised us with a short, drive by visit the other day said, "I guess I'll be seeing you around then Lon..." Yes, you will, you most definitely will.

Happy normal 4th of July!

2008-07-05T07:34:00.000-07:00

Hope you all had a happy 4th! We enjoyed Linda's version of my dad's famous ribs. They were awesome. Smokey played in his custom, built by Uncle Lee, top of the line, sandbox. We tried lighting some fireworks but that didn't go so well...

I haven't had much chance to blog this last week. I can't imagine how my life got so busy. Oh yeah, duh. I have cancer... or had???

Before my last chemo treatment I had a blood draw to determine CBD and also a tumor marker report. And... my tumor marker is normal. Yes, normal. Lee was with me and he said something like "wow, normal isn't a word used to describe you very often." This comment got a bigger grin from Dr. Johnson than I would have expected.

My marker came in with a score of 38. Below 40 is considered normal. Oh sure, I know you are going to ask "what did it start out at?" And guess what? I don't know. Lol. There is no beginning marker recorded in my chart at the oncologist’s office. I don't know why. Susan the nurse sort of explained that by saying that "it didn't matter much what it started at and besides it is only one of many factors they look at." But she said that a normal marker was "good" and that I may only need a couple more chemo treatments. Yahoo.

As a result of this great news Dr. Johnson scheduled me for a CT/PET scan next Thursday to see just what has occurred to this point. I get to go back for another ride in the 3.5 million dollar trailer.

I have to tell you that they were very cautious not to let my reaction to the good news get the best of me and it was down-played a lot... understandably. They don't want to get hopes up and/or make me think that it has all disappeared when there is probably still some there to worry about. But I don't care. Good news is good news.

I'm also now looking for a nanny... again. This will be nanny number 9. If anyone knows someone who might want the job... email me. I arrived at the nanny idea yet again after the demise of my cleaning girl and Linda maybe having to have surgery on her neck soon. Linda needs less to do and I already need more help—with her being out for awhile, it could get ugly. So it's easier to find a nanny to help entertain my son and do housework instead of finding someone to run the Jungle; at least I think... I've been through fewer nannies than employees over the years, so at least statistics are on my side.

We go through nannies as fast as we go through cookies because my son is such a high-energy kid. And he is always by far smarter than them... it takes a toll. I wish I could find a Lego-expert, geek that can also do the dishes and play tag. That's what I'm hoping for—someone that knows a Bionicle from a Jedi Knight, who can also load a dishwasher and run a little... that can't be that hard, right? Oh yeah, they also have to be germ free and not afraid of a woman with no hair...

Happy 4th!

Round 4—Catch Up

2008-06-25T04:53:00.000-07:00

Hi all, I'm here getting number 4 chemo. I think today while I have computer time would be a good time for a catch up. Lots of things have been happening in the last few weeks.

First of all, oh man, I have to tell you about the demise of my cleaning helper. Remember I hired her a few weeks back? Yes, she is already no longer in my employ. Wow, was she something. Of course it makes me question why I often hire people with such exocentric behavior... there must be something, because her problems really are not that much of a surprise if you know many of my employees past.

I had such high hopes for her. But, from the first day she showed up, I started to get worried. I really wanted to give her an honest chance though. She had a lot about her that was really likeable. She showed up about 15 minutes late the first day... well I figure something may have happened; traffic, she got lost... something. But being late on your first day isn't so good.

Once she arrived, I showed her the schedule of what I wanted her to do each day and got her going. No excuse for the lateness, I let it slide. Shortly after she had started cleaning, when no one else was around, she asked about the cool little beanie hat I was wearing. They are cool check out www.cjhats.com. They are handmade by a woman who survived inflammatory breast cancer and went a year with no hair. She now makes a living selling hand made head coverings on eBay and on her website. How's that for a big F-U to cancer? And they are wonderful.

Then the new girl—on her first day—whips off her wig. Yes you read that right… wig. She is nearly bald on top in an unusually uneven way. She then tells me she has that disease where people pull out their own hair. Huh? Okay, I've heard of that, but don't know much about it. She tells me how she wears hats sometimes too; but that when she first started wearing wigs some girls at school were hassling her and told her they would try to rip it off... so she took the wig off and said "now what are you going to do? I ruined your fun didn't I?" Whoa... gotta respect that don't you? That made me really want her to stick around. That sounded strong, and tough, and cool to me. But I didn't miss the irony of her mom having had chemo and no hair and then she gets this disease where she pulls out her hair??? Hmmmm...

After that shock she kept cleaning... sort of... well... um... she loaded the dishwasher. I kept saying, “Oh you need to do this or that,” while I was trying to work on some paperwork. But, it took my full attention just to tell her what to do. I guess my list of duties was too vague. To me, do the dishes also means clean out the sink after you scrape the food off and put them in the dish washer. But as Linda pointed out to me, "hey she did what you asked." So I was careful to give her more direction. The next time she was supposed to clean my bathroom and bedroom. I was very careful to give her detailed, albeit verbal instruction. I would have to say that after she had she pronounced herself done and gone home, that she had cleaned about 10% of my bathroom. I couldn't even see anything she had done in my bedroom, except maybe vacuum a 2-foot path down the front of the room... maybe… kinda… sorta… if the vacuum wasn't working very well.

The next day she called and asked if she could bring her 12-year-old sister because they didn't want to leave her alone at their house. This seemed like a red flag to me so I said "no." She didn't come that day.

The next day she came at her usual time—20 minutes late. This time she wore a tank top and she had horrible, scary looking cut marks on her arm and in her cleavage. So she does both, cuts and pulls. Oh man, oh man. This I have also heard of, but didn't know much about. But I gotta tell you that stuff is hard to look at. I never asked her about it. I was too afraid too.

This time I was determined to give her explicit directions. I walked around the room with her and gave her a verbal list. After she loaded the dishwasher and said she was "done" in the kitchen she went to start on my downstairs bathroom. I walked down with her and gave another verbal list. I pretended I was talking to someone that had never cleaned a bathroom before. I went so far as to explain that when you clean the sink; move all this to one side and clean under it with that wonder cleaner, then move it back and move all the stuff on the other side and clean under it, put the stuff back so it looks nice and clean the sink and the mirror. Then do the toilet. Clean the bowl with the brush and then clean off the seat and under the seat and so on. So far she seemed to understand it all.

So about 10 minutes later she says she is "done" again. So I go back to look at it while she is still there and about fall over. She moved the stuff on the sink to one side and cleaned under it; okay… but she didn't move the stuff back, didn't do the other side, didn't clean the mirror, hadn't cleaned the floor; but the tub and the toilet looked okay... sorta… kinda.

I pointed that all out to her and she made a few excuses about that's how she does it at her house or whatever... then she went back to finish. About ten minutes later she appears again and says "done." I go look again; no clean mirror, no clean floor and she left all her cleaning supplies out and scattered all over the room. And I mean she thought she was done enough to leave. Now I'm really worried. Finally I get her back for round 3 in the room and she still misses the mirror and leaves her cleaning supplies out.

The next day she is a no-show again. I don't remember why... does it matter? I decide to give her one more chance. I wrote down a very, very detailed check list. I'm thinking she is ADD so if she has a paper to look at it will help. And it did! She did a fantastic job that day. Everything was perfect! I even saw her down on the floor to clean behind my toilet! Yay! I was so happy. Yes this will work, right? So what if she had to leave part way through to run something mysterious to her uncle who has an office just up the street, the end result was just what I needed.

The next day... no show. Next day... no show. The reasons don't really matter... goofy stuff. Sister things, doctor appointments, weirdness. It was hard to keep up with all of them. She also consistently kept up having to leave once she got here— odd.

So she finally comes on another day while I have some friends visiting so I didn't really get to chase her around nor did I want to chase her. But she was doing rooms she did before so I thought it was okay. I was wrong; back to 10% of the job being done. She spent a long time in my room so I figured she was working hard like that one good time... well... no... that didn't happen. I can't think what she did up there all that time. Adrianne said "well you do have a lot of interesting things up there; she's probably looking around..." Hmmmm. Perplexing.

More no show days go by. She shows up again and I had to leave while she was there to go and pick up a prescription before the pharmacy closed. I grabbed my son and told her I would be back in about 20 minutes. When we got back I met her coming up the stairs from the downstairs bathroom. When she saw me she went into full Nichole Kidman mode... back of hand to forehead, "ohhhhhh... I think I have heat stroke." That did it. I told her to leave for the day.

I still gave her excuses in my mind. She told me she had been up early, little sleep, etc. So one more day—I would stay, make sure she read the list... I kept remembering that one day when it was soooo good. In retrospect, I think I kept a lot of old boyfriends around for the same reason. That one good day...

The next day she sends me a message saying, "What do you want me to do today? They think I have heat stroke." I messaged her back and told her just to come and pick up her check and that she obviously needed a job with more flexibility. A check for her has been sitting on my counter now for days. So far… no show… no show… no show.

While I'm here getting my chemo I just overheard a tiny little lady, who from the conversation I get, is in her 90's and has some sort of cancer. She went back to ask the doc about a mole on her arm that she forgot to ask about before and catches him in the hallway right outside the door of the chemo room. The doc tells her nothing to worry about and comments how well she is doing for being in her 90's. She says it's her cat. For some reason this makes me teary eyed. I love my cats. They do help. It's the love, the companionship at 2 am when you can't sleep and the fact that you know they are only around because they like you. She goes on to say she let her cat come in her room and it stays with her all the time and she thinks the constant company is making her stronger. I wipe away a tear. Geez... wow. Damn. I want to go hug her but I can't.

Yesterday I had another thorocentisis. And I have now decided that TV is bad for some doctors. These guys have obviously seen to many fun-loving docs on TV and now they think it is okay to be really unprofessional. Remember last time they caused a problem. So this time I thought they would be extra careful. And to their credit they were—really careful. But it was the circus they had going on during it that was scary.

I got the same technicians that did the last one. They knew who I was before I walked in; their demeanor was rather nervous—understandably so. The same girl that did the other one sat down with me and tried to explain it all. She said she had talked to the doctor in charge of the department and they all consulted about it. She wanted me to know that since it happened that one time there could be a little bit greater chance that it could happen again. She went on to try and explain but a lot of what she said was not making sense and she was so nervous she was kind of running on and babbling.

Finally I told her that I trusted her and please just do it. I wanted to breathe. I told her to be careful and if I felt discomfort I would tell her so she could stop, etc. So she started getting it set up, looking on the ultrasound and planning which ribs she was going to go between.

Then the doctor in charge barges in the room. No knock and peek… just opens the door and hands the girl getting ready to poke the giant needle in my back her cell phone. He says, "I just sent your husband a mean text message from you; I told you not to leave your phone on my desk again." She gasps. "What did you say, what did you say?" Has a mini freak out but needs to finish what she was doing before she could look. She introduces the doctor and he talks to me for a minute to help.

Only problem is they discussed another patient that also had a poked lung and he confuses us. The other patient is much worse than I am... or was. So he starts telling me a bunch of stuff that has nothing to do with me, but is alarming. Like lung damage I don't have, may not be able to get the fluid if it is trapped and this goes on and on... meanwhile he is anxious to see the technician’s response to his text so he is glancing back at her, talking to me... he asks her if she looked yet...

I say, "Look I don't care what your thing is with her, I don't want to hear it, I don't care if you are having an affair or whatever. I don't want to hear it, just get me done first." He takes me so non-seriously. Which I can understand, I joke a lot. But I was serious. So she stops and looks at the message. It says "I am so sick of you." She shrieks. OMG, OMG. That is the message he sent her husband as if it was coming from her. The doc laughs and laughs. Then he leaves.

She now explains to me that he was confused with another patient and there is no damage and she can go in just fine. Then the expected phone rings while she is putting the needle in. And yes—you guessed it—it was answered. At least she had the good idea to have the other tech assisting her answer it. She is freaking out and tells the girl to tell her husband that she is busy in a procedure and will call him in 10 minutes. I know my procedure is just starting and will be at least 1/2 hour. The tech relays 15 minutes... but still... during this they do all this? Damn.

So she sort of apologizes. Explains that the doc did threaten if she left the phone again he would do this... like that makes it okay. She explains that the doc and her husband are good friends so it's not that big of deal. So I suggest sarcastically that maybe the doc is after her husband. This makes her giddy because I know she will repeat that later.

About this time the doc barges in again. A quick "how you doin'?" to me and he is just jumping with excitement to ask about the text message. By now the fluid is pouring out and I'm sitting there helpless, but nervous. They all take a break in the room with me to discuss the outcome of the message. I'm appalled. I'm starting to hurt. I think I'm going to cough... I'm pissed off.

They are giggly. "Oh I can't believe you did that... hahahah... Oh my... hahah." "Yes he called; oh look here comes a text from him... hahahah." So before the text war, that I knew would soon start, I say "hey, I'm the patient here dammit. Pay attention to me and not your stupid text message." Now they get it. I'm mad. The doc grabs my hand and says he is sorry. He didn't mean to make me feel like I wasn't being paid attention to; that he was "just trying to take my mind off it..." Not buying it. So I tell him "well it's not working." He gets a tiny bit flustered and we have a brief stare down while he determines how angry I am, then he jumps into action again.

The doc then grabbed the ultrasound and started looking. I explain my pain and he makes suggestions. By now I have filled up 1 and 1/2 liters and more is still coming. But I hurt. And I'm struggling to hold back the coughing fit. The doc suggests stopping the suction on the tube and letting me rest a bit to see if it helps. It does help some. But I still hurt.

The doc asks how much they got already, and the tech says “this much,” but doesn't explain 1 and 1/2 liters. He just sees the half. He gets determined that I need more and more out because he thinks there must still be a good liter or more in there. I want to smack him. I tell him I don't think so... he looks again at the ultrasound and says he sees a lot of fluid right there... we do a little more... I'm in real pain and coughing a fit out.

Then the tech says she doesn't think there is that much more... I can't believe that I could have functioned at all if there had been 3 liters on me so I tell them to stop, I can't take it any more. So they do, take it all out. I'm still in pain and coughing but at least I know they are done. Then the "reasons" start flying. He has personally done "hundreds and hundreds" and never had a pnemonathorax. The tech that did mine has only had one... yes, me... and she has done at least 200. They don't think they did it. "Could be Dr. Abdulla, could be spontaneous and was just there from before… blah, blah, blah." I don't really care who did it. I just want to breathe and don't want another problem.

I can tell they are just itching to get that damn cell phone. Their eyes keep going to it... they can't wait. Oh fine. The doc leaves while the techs are cleaning up and I'm waiting for x-ray to come and get me. While alone the tech tells me they are a joke loving group and on April first they sent all the docs in radiology a message to call hooters and ask for some name that means "I have a large penis," but she couldn't remember the name. I couldn't think of one, can you? If you do email it to me... maybe I will call in a joke to them, haha. Okay, funny yes... I approve of joking around... but not while you have a needle in your back. Geez... at least wait until I'm out of there.

I end up having to wait a long time for x-ray. So the tech leaves, and I'm certain, ran to listen to the phone messages and clear it up with her husband. Finally x-ray comes and takes me away. I get the xray and then have to wait for the radiology doc to look it over. I get back to radiology and after a minute or two I am surrounded again by the 3 of them. They are so happy they are literally jumping around. No pnemonathorax. I'm fine, free to go. Whew.

The doc apologizes for making me feel like I wasn't being paid attention to again, I say “okay.” Then I tell them "thanks and don't take it the wrong way but I hope I don't have to see them again." The doc gets red in the face, they all giggle nervously. All I can say is... too much TV. I think he believes he is one of those cute docs that can do that because he is like that guy on Scrubs or somewhere... goofy. Bet it won't happen again!

I was in a lot of pain from it last night. But today, I can breathe! That is so nice. Man, you just don't know how great that is until it is gone.

Do it again... now!

2008-06-24T02:52:00.000-07:00

I'm going in for another thorocentisis this afternoon. Remember the one last time, where they poked a little hole in my lung? Yea, that one. Where they stick the really long needle in your back and tap you like a maple tree full of syrup. I figure if there was 1% chance of that hole thing happening that time, then the chances of it happening twice to the same person must be slot machine odds eh? Plus, I can barely breathe... damn. So I get the big needle again today, and I'm looking forward to having it done. You just don't appreciate how nice it is to breathe freely until that gets taken away from you.

Then I have my 4th chemo treatment tomorrow. Number 4. Four down, and perhaps 4 more to go? I think I am half way through the chemo. Half way; at least according to the initial plan. They did a tumor "marker" test Friday, so I'll know more tomorrow how we are doing. It's working. I can see and feel changes.

So while you are having that bad day today—stuck in traffic or just having to be at your sucky office—breathe! And be glad you are not getting stabbed in the back like me... well... if you are in an office that is probably happening and you just don't know about it...

Star Wars cake coming at ya....

2008-06-19T14:52:00.000-07:00

Star Wars cake coming at ya....

Here is my son enjoying some of the frosting off the cake he decorated for my birthday. He built those Legos himself, specially to put on the cake. The black one is his own design. And thanks to my sister, Connie, for naming all the kids in my 4th birthday photo... she used to baby sit them! Here is what she says;

JUST READ YOUR BLOG... NEXT TO BECKY, THE GIRL WITH THE WHITE CURLY HAIR, IS WENDY ZEIGLER AND NEXT TO HER IS HER LITTLE SISTER FRANKIE (SHE CHANGED HER NAME WHEN SHE GOT OLDER, BUT I DON'T KNOW WHAT TO). YOU ARE RIGHT ABOUT LEE AND THE GIRL WITH THE LONG HAIR, IN MIDDLE, IS NAMED GINA AND BRENDA IS THE GIRL AT THE END OF THE TOP ROW. CAN'T SEE HER VERY WELL, AS THE GIRL IN FRONT ROW IS BLOCKING HER OUT. I CAN'T REMEMBER ANY MORE.

Then later she emails again...

I THINK THE LITTLE BOYS ON THE LEFT ARE DEVIN AND DAVID SMITH!

What a memory eh? And yes she always types in caps... she's cool that way...

Thanks to everyone for all the birthday fun, gifts and good wishes.

It’s my birthday!

2008-06-18T06:07:00.000-07:00

Today I turned 46. Someone asked me this morning how my day was going, and I said, “Well I'm happy to be turning 46... and I'll be happy to turn 47 and 48 and 49..." Yeah, it's different now. It used to be getting older was something to laughingly pretend wasn't happening, you know the "29 again?" jokes. Now I think it is a cause for celebration. I plan to live to be an old lady and proud of it.

When I was little, before my mom got sick, she used to throw huge birthday parties and invite the entire neighborhood. Then there would be a family party later that night where you would get another cake and more presents. Here are a couple of pictures from my 4th birthday.

I'm the one in the front row in the cute blue skirt with the knee socks. I don't remember any of the other kids except I can tell the girl in the front row in the pink is Becky, Kay's daughter. Which means one of those brown haired girls is Brenda but I can't tell which. And I'm pretty certain that the tall good looking guy in the back in the red and white stripes is my brother Lee.

This is the cake and family party later that day... I'm not sure why I am so dressed up; except maybe that cute dress was a present.

A year later, when I was 5, my sister Joan and Lee took a package of suckers, opened it and wrapped each one individually in boxes of all different sizes. Then they lead me into a room filled with about 30 wrapped presents and said, "look at all the birthday presents that just came for you, don't you want to open them..." After about the 4th or 5th sucker I was pissed off. I think this was mostly orchestrated by Joan, with Lee as merely an accomplice, but I could be wrong. You never know with Lee... and nope... I still haven't forgotten it. I'm still slightly wary whenever I receive a gift from either of them.

Here is a photo from my 10th birthday. Notice how stylishly I am showing off my new bracelet? The short blonde girl in the front row decided she was in love with Lee that day and literally chased him around the yard several times trying to catch him and kiss him. I later heard that she ended up joining the air force and became a lesbian.

My "C-word" Personality

2008-06-15T00:46:00.000-07:00

I've been trying to figure out "why" I got cancer—I don't mean the biological how cells form reason—more the "why me?" reason. I think that is something you can't help but ask yourself when faced with something like this... what happened? Or the more expressive and accurate, WTF???? This morning I came upon this article on the web. It's me.

More than anything else I have read about the emotional or non-physical causes, this hit home. Here is a link if you are really interested, go read it.

http://www.alternative-cancer-care.com/The_Cancer_Personality.html

I would guess however, that a lot of people around me, but not necessarily around me on a daily basis would never say this fits me. People see me on the surface as the outgoing extrovert who always speaks her mind and has it all under control... ha! Fooled you all eh? Plus, I'm sure that for quite a few people it was more comfortable to believe this of me than take responsibility for their part of their relationship with me.

Honestly, I do have a ton of unresolved anger. I have complicated grief. I have repressed emotions since I can remember... that's what I was taught to do. "Keep the peace," was my mother's mantra. Don't express anger in the moment, but instead express it to everyone else around you when it feels safe to do so, is how I was taught to handle conflict. I have done that to a great extent. I have repressed anger at old boyfriends, old friends, old employees, old teachers... oh man, the list goes on and on... I have a lot of it. Sure, there were times and places where I let my temper fly and my anger show and it usually caused people to run in fear. But for the most part, it took a long time and a lot of anger built up to get me to that boiling point.

This worked all my life, until now. Until it became too much... until circumstances were so great and people I normally trusted to vent my anger to were not there for me; or worse used that against me. It all came tumbling down. My own shock and grief over the loss of my father and the disintegration of my family; add to that a grieving child, trying to run a business with problematic employees, and well... that's a lot of stress. I was pushing myself so hard, through exhaustion, pain, sickness, grief... something had to give. Unfortunately that something was my immune system. And yes, that all took place in approximately the last 2 years... sigh. Lesson learned; time for a big change.

In that same article you will notice a sidebar about traits cancer survivors share... I'm on it. Those sweeping life changes—ye, I've already been thinking about that for weeks now. I want to live and be here and raise my child... but it has to be different. I don't want to go back to my life the way it was... I want better.

I want people around me that actually like me, that may sound strange, but on some level you know the people who really like you and those that don't right? I've had a lot that didn't really like me but were here for some reason other than me. They are gone; or will be soon.

I want authenticity, not just from myself, but from people around me and I want them to support me in living an authentic life. I want people around me to tell me if they are angry at me and know that I will listen and work out whatever it is; or at least agree to disagree and feel safe doing so with me. And I want them in turn to do the same for me.

I want employees that care as much about their job as I do; whether they are personal employees or Jungle Roses employees. I no longer will accept being stolen from, lied to, insulted, or disrespected in any manner, by anyone that I employ.

I want people around me to respect how I choose to raise my son, and if they disagree with it don't try to talk me into "how it should be" or worse just try to change it on their own when I'm not looking... I'm doing what I believe is right and it's coming from my heart. That must be respected.

I want people around me who like me for the imperfect person I am; take it or leave it.

So there you have it—the new me. I guess that makes me changing from one "C-word" personality, to another type of "C-word" personality eh? I know it's sort of expected from all the movies and TV shows about people with cancer that the cancer patient is supposed to unselfishly forgive and love everyone around them with new understanding while sentimental music wafts through the room... well... I'm not following that script... lol.

3rd time not so charming...

2008-06-09T02:12:00.000-07:00

Wow... I'm just coming off the chemo-train for the 3rd time. This time was so much more intense than the first two. Not so much the level of discomfort, but the relentlessness of it. Every muscle in my body hurt. And then I got these crazy involuntary muscle contractions... I'd just be sitting there and whamo, my leg would bend all on its own making me sort of jump. It was one of those things that are tragically funny. It hurt, looked strange and made you laugh, all at the same time.

I spent a lot of the past few days sitting on my bed in a Lortab fog while Lee, Linda and TC entertained my son. And thank goodness for Legos! Friday night my son and I had to be alone and we were able to pass the time and get through it okay by building a huge, new Lego set on my bed. I'll always remember that; sitting on my bed building Lego race cars. I hurt and could barely move, but he was thrilled to sit with me and build for hours on end. There may always be a secret Lego set hidden in the closet for such emergencies.

On Saturday Lee took him to Home Depot and they returned with a much bigger project to build—Lee is so much like our Dad. A small project like, "I'll just put a shelf up here," turns into a near complete remodel. Our family room is now a work in progress. Hmmmm... Next I'm going to mention how my bathroom could use a "shelf" and see what happens...

I feel a lot better this morning; except my hands and feet are weirdly numb. I know that is a side effect of the chemo but it's still such a weird feeling. It's like when one of your limbs falls asleep and you get that pins and needles feeling when it starts to wake up. Only I have that pins and needles thing constantly. It feels weird to type... and it makes me walk kind of funny.

I've also lost most of my eyebrows now. I didn't really notice that happen... that makes you look strange. Now I really look like I have cancer... it's all in the brows.

Moms get sick... single Moms get sick, too. Help!

2008-06-03T19:14:00.000-07:00

Once again I am here at the cancer center waiting for chemo treatment #3. It's a busy day here. Susan joked that it was "take a number day," and it is... people are waiting, including me. Dr. Johnson said that I am "responding very well," and he wouldn't change a thing we are doing right now. I got this response after I asked when he would do another PET/CT to see how things are doing. He says “maybe in a couple more months.” Notice how I artfully left that dreaded MRI out of the loop? ha. Not doing that again.

The last 3 weeks or so have been a blur of activity for me. Business has been up; things have just been going on and on and on... and I realized I need more help. Lee and Linda have been giving me 110% and that's even with the wedding of the year going on this coming weekend for them. I'm grateful and I still need that 110%. I also need more...

I find that with the exception of the 5 or 6 days right after I get chemo, I can function fairly well with about 2 or 3 really good hours a day in which I can work or play with my son or do whatever else needs to be done. However—I don't want to spend those hours doing the dishes, laundry, etc. And to be honest I haven't been. My house is a maze of Legos, toys, dirty laundry and what-not all over the place. You sort of have to kick things out of your way to make a path where you are walking. It's gotten a clean up now and then but it's getting to me and getting worse all the time.

So, I decided to hire someone to come in a couple hours a day and do housework. Freeing me up to do what I really want to do during those good hours. I started asking around and found that the Cancer Society has a program where they send volunteers out to clean free of charge. They give 24 hours free... sounds wonderful. There is a really long waiting list. So long that they have yet to respond to me since I contacted them 2 weeks ago. Plus, I felt rather bad taking cleaning away from someone potentially worse off than me... not sure I can do it. I would feel bad.

So after checking with friends, family, etc., I resorted to placing a blind ad on Craigslist. I had several responses. Some rather goofy. One woman wanted to put her 14-year-old daughter on the train and then have her bike the rest of the 30 mile journey to my house. I told her that wasn't safe... geez. A few people moving here from there in July etc... about 4 people really seemed like they might fit. I narrowed that down to 2 interviews.

The first woman I interviewed... well... I could not get past the 5 inch stiletto heels and tight skirt she wore to the interview. Ummm... sure she said that she has other clothes to wear but I just could not picture her cleaning my cat box. Lesson—always dress the part for the job you are interviewing for; no matter what.

The second interview was great. I really liked her. She is young, only 17. Her Mom has been through chemotherapy twice. Plus, she is an animal lover, has horses, 7 cats, takes in foster cats, isn't afraid of snakes and even kicked off her shoes before she came in my house. Plus, she said she "loved Legos." She starts Monday.

Needing help has been difficult for me. I have always been insanely independent. I have avoided marriage, live in boyfriends or anyone who tries to tell me what to do, for most all my adult life. If fact, I have gone out of my way to go against the crowd and to defy anyone that tries to tell me how it is... I was a bad employee, fun girlfriend and thought there was nothing I could not do on my own, in my own manner.

I see a cool chiropractor Dr. Corey Sondrup. You have to visit his website, if for no other reason, to see his beauty. He is a pretty man. I have known him for a long time. A lot of my employees have gone to him over the years. All of them have had secret crushes on him. www.optimalhealthdynamics.com. He does a lot of healing techniques that some would say are "out there." I say they are "cool." His finding on my "life lesson" for this disease was to learn how to ask for and accept help. Um... wow... okay. I had lots of interesting reasons why this might be the case. "I hate to give up control... I don't want people to feel taken advantage of... blah, blah, blah,” but, what it came down to according to his ethereal testing was I was "afraid of losing my identity." I had to think about that for a long time.

I have always smacked my "identity" dead center on my intelligence and independence. I would rather people say "she is so smart and independent" than say I was pretty. Why? How had I arrived at the idea that not needing help and being so independent made me "smart?" Ahhh... I see it now. And in doing so it has helped in reaching the conclusion to hire help because I don't want the same thing to happen to my son.

You see my Mother was chronically ill for most of my life. She passed away several years ago due to liver disease. She was an amazing woman. One of those whose depth you don't really comprehend until they are gone. In many ways my Mom was simple. And in many, many more ways she was very complex. Smart, but under-educated. Her parents were homesteaders in North Dakota. She often said the Little House on the Prairie books and TV show where like her childhood had been brought to life. She went to a one room school house and then had to live in another town a few hours away with her older sisters to attend Jr. High and High school. She sort of, graduated high school. She had moved to Seattle and before marrying my father, she proudly was the assistant manager of the lingerie department at Sears and Robuck. A stunning beauty she was named "Sears national sweater girl" and was photographed in tight-fitting sweaters for advertisements. She looked like a movie star from that era. She married my father at a young age and moved with him to Utah from Seattle. Fierce and tough, but never learned how to drive. She was very dependent on others yet could hold her own in a lot of situations.

She survived cancer of the uterus a year or so after I was born. When I was younger—like 6 or 7—my mother had a few health problems here and there; high blood pressure, ulcers, and various things. She made regular doctor visits, but nothing alarming. When I was about 10 or 11—I can't remember exactly when, but it was around that switch from elementary to Jr. High school—she was diagnosed with cirrhosis of the liver and told she had 6 months to live. Ironically, my Mom never drank alcohol but had the disease most credited to heavy drinking.

This had a huge impact on my family of course. And by this time our family at home had shrunk. My two older sisters had married, had children, and/or moved away. One lived closer from time to time but had young children and a dissolving marriage. The other was off from state to state searching for her dream. She came home sometimes; like holidays. My brother was off working also... after a less than stellar performance in college, he followed my father into the building trades; a seemingly very good move for him. I don't care how smart you are... you need to do what you like to do and are good at. I have more theory on my family members’ quirky genius... but like my sisters... that deserves its own blog.

The economy in our town was tough at that time. Building had slowed down to a crawl at best. Due to my mother's health concerns, health insurance was tough to come by. My father's trade had been hurt by the downturns and in order to find a company that would provide the drastically expensive insurance for my mother he took jobs out of state. My brother went with him. Sometimes he was closer, like Nevada or Idaho and thus he could come back regularly, like every couple of weeks, but only for a few days at a time. Sometimes he was far away; like Kansas and he could only come back every few months.

So for several years, from the time I was 11 or so until I was 18, it was my mom and me; and for a lot of it I was scared out of my mind. I was frightened that she could die at any moment. That something would happen and I wouldn't know what to do... somehow no one had explained to me how to call for help or which neighbor to go to. I remember watching carefully when riding in the car to see how people drove, in case I had to jump in the car and drive her to the hospital myself when I was 11.

I grew up very fast. I had to.

Granted things were simpler then. We are talking more than 30 years ago. It wasn't a big deal for kids to walk to school on their own. And it was safe to ride the bus to buy groceries or do whatever you needed to do... we lived in a pretty and little town. Nothing much happened.

I spent all of my Jr. High and High School years alone with my mom. Talking care of whatever she needed and pretty much doing the household upkeep as well. I'm not complaining, I think my childhood was just fine. I tend to break it up into two parts. Before Mom got sick and after Mom got sick. It's odd now to talk to my older siblings about it because they had a totally different experience of it than I did... understandably so, they weren't there.

I didn't do a lot of normal kid’s things; didn't vacation in Disneyland; didn't play the days away, like my friends did. I was well taken car of though, and never lacked anything… except for freedom and independence for my mom. Her not being able to drive was a big deal. I know places like New York and other big cities some people never learn how to drive. But this is the West, and a small town. I remember her and I taking 3 different buses so I could get to the orthodontist. Just a tightening of my braces took a whole exhausting day. Grocery shopping on the bus was an adventure... she was a wiz at stocking food away so we didn't have to do that very much. Lots of times other kids at school would be on the bus to go to wherever they went in the cliques and gangs and the next day at school there was either teasing or the kinder gentler query of "why were you and your mom on the bus with groceries???" There were no neighborhood markets; the closest store was miles away. No McDonald's close by, no pizza delivery. People in our neighborhood cooked, went to church and watched TV.

I didn't have a ton of friends, but the ones I had were loyal, and some of them are still in communication with me. The most difficult thing for me was having to wait on my mom. That sounds so negative; but that's what it was... she would sit and watch TV in her chair and I was her caretaker. If she wanted something she asked me to get it for her. I went to school during the day and at night I was a home health worker. The mental stress of it all took a toll on my mom. When I would try to spark up a rebellion of any sort it was usually met with a "you have to be nice to me I could die at any time." That was true. That is what the doctors told her. I'm sure she was scared. This was also something she would tell my fiends, the few dates I had and anyone who tried to involve me in something.

I remember some of the girls from the "ward;" (and this is something you have to be LDS to understand, but I will explain best I can) the "ward" in a Utah neighborhood, especially at that time, is the place your friends come from. Mormons or LDS have church houses in each neighborhood here. Each church house has 3 or so "wards" that meet there. The wards are drawn by proximity to the church. Then each ward has a designated time to meet for their church services. At that time and in my neighborhood I knew of only 1 non-Mormon family. All of our neighbors and 99% of the kids in my school were LDS. If you were not LDS, or chose not to go to church meetings, well... your social life went to hell too.

One day in particular, while I was in 7th grade, the girls from the young women's association of the ward came knocking on the door with the best of intentions. They wanted to know if I could come to their meeting at the church? Wow... did they get an earful. I overheard it from the kitchen as my mom gave them a good "talking to." She told them, among other things, that she was/could die at any moment and "were any of their Mother's like that??" That I had to stay home and take care of her even if it meant "scrubbing the floor..." now at this time I never had to scrub the damn floor. I have no idea what that was about. My older sisters, yes they had to scrub the floor. But, by that time we had "mop and glow." She asked them if any of them "had ever scrubbed a floor?" Aaa... um... silence. Then she said "I know you think you are better than her, but I think she is better than you, because none of you could do that..." "She cooks dinner and cleans too... do any of you?" I was confused and stunned by this. I liked cooking—this didn't bother me, I never scrubbed the floor, I didn't think that much of it... but yeah, I would have wanted to go with these girls. This went on for what seemed like days to me as I was listening. I was frozen. I couldn't move. I just listened. Finally she sent them away... with a "now go on to church and don't bother her." I was mortified.

And no, none of those girls ever bothered me again. Fine. I made great friends with the non-Mormon kids who were pretty great in their own right. Things got more intense for me as I got older.

By High School I really felt the need to go places and do things. So in my adolescent way, I found the solution. Be independent, don't need help, don't need friends... not to mention, don't need boyfriends. I wanted boyfriends—just didn't want to need them. I didn't have a lot of them in my school years. As you may imagine as soon as one got the "glad eye" for me and admitted it, the "church girls" gave him a talking to... I found an answer for that too. I dated guys that were older and didn't date any guy from anywhere near my school system.

I filled my time doing an acceptable activity. By that I mean, one that my mom saw as important enough to be away from her for. I was overactive in scholarly pursuits. This allowed me to stay after school with no one to bother me and work on the school play or debate team. I wasn't sporty much, but I could hold my own with any other high-school debater. And I found a somewhat shaky home with the already other weird drama kids—this lead to a sense of freedom. I had play practices and debates to go to... at times this was a day or more away; if I was good enough to travel to another school far away for a debate. I got to meet smart kids from other schools who didn't know me. And school plays were at night. Great.

I finally found the not-so-holy-grail at 17. I found an older guy that wanted to marry me. I jumped at it. It was a huge mistake; and frankly I don't even remember much about it. It didn't last long, not quite 2 years. I wasn't pregnant but I think the thought that it "could" happen was enough to scare my parents into letting me get married. I didn't think much about how this would impact my mom or dad. I just wanted out, and I was close enough to be there when she needed something right?

In hindsight; I should have talked to someone about my unhappiness, but I was afraid to do so... I should have stayed there, toughed it out and gone to college rent free... but I was 17. All I could think of was freedom.

So, fast forward to now. I finally became pregnant after years and years of trying... I was overjoyed. I was fully aware that I was doing it at an older age—I would give birth at 41. I knew I was capable of doing it. Never worried much about the risks of birth defects etc., but I promised myself that I would stay fit so that in 10 years I could go to my son’s sporting events and keep up with him riding bikes or whatever he would do... I was going to make certain he did not have my childhood repeated. I never dreamed in my wildest nightmares I would get such a thing like cancer when he was 5.

Now I cringe inside when I hear people say things to him like "you have to take care of your mother... she's sick you have to be good... you will have to teach him to do more things for you and on his own..." No, no, no... Please no! I want him to never take responsibility for me in that way. That to me, is worse than having cancer. I can't let it impede him. My son is already progressed passed his years by virtue of his intelligence. I want and need him to have fun. I don't want him afraid I could die at any moment. I don't want him to not go places and do things because he has to wait on me. It cannot happen. I will not let it.

So thus, I now proudly admit—I need help. I am fortunate enough to hire someone to help. I know there are people out there who are unable to hire someone. There are other single moms who can't afford a go getting a 17-year-old to do dishes. I am so glad that I have Jungle Roses. Thanks to Joan, Rodney and all those that came before that helped it grow and be what it is... you know who you are... thank you.

And while I think it presents its own difficulty—being self employed, I don't have sick leave and a few other oddball things. When I was given my "textbooks" at my big meeting it included some "financial aid" information. At first I thought, "whew... there is help," but my hopes fell quickly when I read through it and found instructions for applying for food stamps, welfare and disability. Damn. I'm betting there are single moms out there with cancer who had to go for this kind of assistance. Talk about a blow on top of a blow. Yes, there are some other programs that assist with medication if you can't afford to pay for your own medicine. I heard rumors about free wigs from the cancer society and a few other tidbits here and there, but my heart goes out to those single moms that also lost their incomes and have to support their families on government assistance.

My mom, btw, went on to live another 20+ years after that "6 months to live" diagnosis. It got so "normal" for all of us that when she got really sick all those years later it was a shock. With her knowledge of the bus system and her neighbors and friends she lived a somewhat independent life after I moved out. My father "retired"... um... not really, but he thought about it for a minute. He started his own business and was able to find employment back here in Utah after the economy turned, doing what he did best. He finished high-end luxury homes and was in great demand. The economy had somehow made a lot of people that could now afford to build huge, luxury homes and he was the best at doing the interior finish work. He did the finish work in my home and I love it so much. I have wonderful hand made wood work, brick fireplace and other extras all built by him.

He and my mother became like newly weds again. They were happy and had many, many more great times together before my mother passed. When he started working back here again he found me an adult. We had very open talks about that in which he apologized for being away and missing so much of my childhood. We talked about why. I already knew why, but he wanted to say it. We vowed to get to know one another again. And we did, as adults we became very close. I also remained close to my mother. We went on many great shopping excursions once I could drive, and had quite a few adventures together, after I divorced and could take her out shopping, for a full day sometimes. She loved going to Salt Lake to Christmas shop... it was a blast.

I have no ill-feelings about what happened. My parents did the best they could at the time... and it was good. I realize in all to vivid clarity now what my mom was going through, and that it could have been much, much worse. I have to give my father huge credit for his loyalty. It would have been easy for him to bail out at many times. But he did not. My mom could have given up, but she did not. And many times she was really fun to be around. She did a lot of goofy, giggly things; and that was great. And the friends I had that got to know her, loved her.

I also have respect for those girls in the ward. They had no idea what was coming that day they knocked. I doubt they remember that lecture they got. But I'm pretty certain they still don't like me, but they can't exactly remember why...

How I got here from there. Part 8 — stage 4?

2008-05-26T03:52:00.000-07:00

I last left off in this story after I had the PET/CT and was waiting for the results that would come the next day. They did. I got a call from Dr. Johnson late Friday afternoon. He was very kind. He said that the results hadn't been fully interpreted yet, he wanted to study them and so did the technician. But preliminarily they found "reactivity" on an area on my left lung, and a few places here and there near some bones. He was going to schedule me for some x-rays to check the bone areas on Tuesday. I was to go through and get the port installed on Monday, get the x-rays on Tuesday and report for my first chemo treatment on Wednesday. He was more concerned about the bones than the lung area. Not totally understanding the implications—I was more concerned about the lung area. He minimized my concern there saying that the chemo would blast that out of there... he wanted to make sure my bones stayed strong so I could function. He used the term I have now come to understand better "add years to your life."

I pressed him a little more on that... I asked him if he could "fix this?" He said yes... then threw in that "add years to your life..." phrase again. He went on to explain that the drugs he uses to fight cancer now are tremendous and he has ones now that he didn't have just a few years ago and new ones are being worked on still. He fully expects to "fix" this for me. I was very relieved and happy to hear that. Hearing the compassion, knowledge and understanding he has was very comforting.

That following Monday I went in to have the port installed, a slightly creepy procedure, but one I am now happy to have. They thread a small tube into one of the main lines into your heart and leave a small "port" to it just under your skin. That way when you get the chemo they just poke into that port and they are right into your system. I find the idea of having something foreign implanted in your body strange... breasts, butt cheeks, cheek bones? How do people do it?

Lee came with me to surgery. It was funny. First they thought he was my husband and then they thought he was my younger brother. Ugh. I kept thinking how I had to dye the damn grey out of my hair... I also could barely breathe. I asked the nurse for oxygen. They got me some, but not without a little hassle.

Once again my BCM, Wanda, came to help. I told her of my breathing concerns and she suggests they can drain that fluid off while I am there for the port. I love this idea. She starts asking around to get it arranged.

Finally, I get the ride down to the operating room. This is surreal. It's the first time I've been in an official hospital operating room. Other than the c-section to deliver my son, I've never had surgery. I can't help but compare it to TV. Damn Scrubs TV show... now I picture them doing all sorts of crazy things. Shortly the surgeon comes in—the now very cool, Dr. Alder. He seems in a happy and breezy mood... kind of like "oh hi, we are doing this today eh? No problem... big smiles..." He is reassuring. Again, I ask him about doing the lung tap. Seems to be the first he heard of it... but he says "sure, no problem."

He sends someone to get my last lung x-ray and the proper paperwork for me to sign. I'm already getting a little woozy. Someone is prepping my shoulder for the port. Dr. Alder is explaining to the nurse that he is going to do the thoroscentisis and asks her to prep for it. She says "what? what's that? I've never done one of those before..." I want to very badly to say, "Hey! Never say that in front of a patient..." but I can't, I'm already asleep.

Next thing I know I am being hefted around from the rolling bed to another stationary bed for recovery. I can hear people now. I hear Lee laugh... I fall back asleep. I hear Dr. Alder say "we took 2 quarts of fluid off her lung." I can speak enough to say "2?" Yes 2. Then I fall back asleep. I hear Dr. Alder say to someone "she has stage 4 breast cancer..." I want to very badly say "I don’t! What the hell are you talking about?" But I'm asleep again. Then I hear, "we may want to keep her overnight..." Next thing I am awake for is pain killer going in my arm. Yes... please... more of that.

A little while later I've recovered enough that they decide I can go home. A little coughing from my now freed up lung. I'm anxious to be home. What happens next is a kind of a comedy of errors. I don't see what I look like when I leave and I am covered all over with that reddish, sterilizing gunk. It's now dried to look like something horrifying. We have a short amount of time to race to the pharmacy to get my medications before they close.

Lee drives a ridiculously small car for such a tall guy. He races in and out of traffic like he's James Bond. We make it to the pharmacy with 10 minutes to spare. Their drive in window is already closed. He has to go inside. I ask him to buy some wet wipes or something to clean me up before I go in the house. He brings out medications and some tiny alcohol swabs. I take an alcohol swab sponge bath the rest of the way home.

Once I am finally in my own bed, relaxing and recovering, it all flashes back to me... "stage 4 breast cancer." No one has said that to me before I overheard Dr. Alder say it. The next opportunity I have, I Google it. I am it. I have stage 4 breast cancer. The worst.

Of course I am compelled to end this blog there and leave you in the moment of drama. But I won't. I already know what that evokes. Like the email I got saying "I just heard; is it too late for me to see you?" or the "I'm praying for you to pull through... you have so much to live for..." I can't take those; especially if I already know that you are not a person that prays but you think that is what you are supposed to say.. lol. So here is the real deal:

Yes I am stage 4. But stage 4 is a very, very broad category. Here are the stages: Stage 1—means you have a very small lump in just your breast. Stage 2—means that the cancer has also made it's way to your lymph. Stage 3—refers to size... it's a bigger tumor and it's in both the breast and the lymph. Stage 4—means some cancer (be it a lot or a little) has shown up outside the lymph and/or breast area.

I also learned what "reactivity" means. Cancer responds to sugar. It sort of goes crazy when it gets it. You fast for the test, and then they fill you with glucose and photograph your body to see what is "reacting" to the glucose. A few cells having a party with the sugar doesn't make a tumor.

So stage 4 covers everyone from having one little tiny spot of reactivity from cancer somewhere outside the breast/lymph areas to someone that has it in several major organs. It also covers those who are young with no other conditions and those that are very elderly with many other problems. I'm an otherwise healthy 45-year-old woman and I'm in the same category as a 90 year old with diabetes, high blood pressure, cancer tumors in 3 or 4 organs and who is bedridden. The statistics are misleading. And once you are a 4, you never go back down to a 1 or 2 even if you are cancer free.

Women in my situation are living and living cancer free after treatment. The difference is that I will never get that "you are cured" diploma that stage 1 women get. I will always have something to look out for and guard against. Yes, that makes me in the broadest interpretation of the word "incurable." However, I see it in much the same way that many chronic conditions are "incurable." It's something that I will live with and watch and manage forever. Much like a diabetic who takes medications daily and watches out for worse—I will do the same.

I find that very little is out there about women in my situation. It's sort of annoying. We hear a lot about the "tiny little lumps" that women get removed with a sign of relief... we hear about the actress that hid her lumpectomy—but then admits it when she has a movie to promote... but not much about women in stage 4. Most of the public has the impression, and rightly so I suppose, that stage 4 is to be followed with the question of, "How much time does she have left?"

The impression is that either it's a two week recovery from a lumpectomy or death. Not a lot of in-between exists in peoples’ minds. I've gotten emails from people saying, "Oh I'm sure they caught it early and you will be fine soon, my thoughts and prayers are with you." Um... what do you say to that? When I went in the other day for my thorocentisis, the technician said, "Oh you have cancer... you must have had a little lumpectomy and you'll be fine soon." Um... not exactly. I explain my course of treatment to her and she sort of tilts her head to the side and says "oh."

So I won't be well in two weeks, but I'm not going to die. Of course we all die—what I mean is that I'm not going to die soon. No one has given me "____ time to live." I plan on being around for a long time. What happens now and how long it takes to get me back to something that resembles normal? I'm not sure. I'm going for the ride.

I think this blog catches me up to present day. I'm going to keep up as often as I can with what is happening and how treatments are going.

I've been asked a lot about why I'm blogging. Basically I have a lot to say. But I haven't a lot of free time to say it. Between running Jungle Roses and taking care of my son and my now new full time job as a cancer patient... I don't have much spare time.

I am also guarding my son. I can't have phone conversations about how Mommy is or isn't going to live in front of him. He is freaked out enough as it is... he doesn't need to hear more. He isn't one of those kids adults can have a conversation in front of and the kid just tunes it out. He listens, pays attention and will quiz you later. He's also had his share of death already. My father's passing was very, very hard on him. If he thought Mom had a chance of dying... oh man... I can't imagine it. So I'm asking everyone around me to please be understanding. I will catch you up in my blogs as best I can.

I welcome your emails, questions and support.

My port is like the one on the left. Now that it has healed it looks about the size of a nickel, only fatter… and it kind of floats around under there.

It’s really just a bunch of dead cells hanging off your head...

2008-05-22T11:37:00.000-07:00

Today, while I was waiting to get my follow up chest x-ray, (and btw things seem okay, a few days I should be much better) a very sweet older woman who works as a volunteer at the hospital—mostly telling people where to go for what—approaches me. She very gently says "I probably shouldn't ask you this... but are you going through chemotherapy?" I tell her it's fine to ask, and yes I am. She says "is it really that hard to lose your hair?" Ummm... now she must be at least 80, so I'm going to be nice, and I can tell that it took a lot of courage for her to approach me, so even though I really want to say "no the hair was easy... it's the cancer that's hard," I don't.

Instead I say, "Honestly it seems harder for other people to see me lose my hair than it is for me." She says, "oh," and then goes on to explain that her grandson had to have chemo and he was very, very upset when he lost his hair and she just wondered if it was really that hard. I tell her that it's probably harder for some people than others. She then says, "He was only 19 at the time and he had a really hard time with it, but the second time he had to have chemo he was 38 and it didn't seem to bother him much at all." I explain that maturity probably has a lot to do with it—at 19 your world is different than at 38. She also looks to me like she is wearing a wig of very thick black hair, when she probably is white and thin up there herself. That's ironic. Then, gratefully, I got called back out of the waiting area. She slightly tears up as she says, "thank you and good luck." Odd eh?

So I went from nearly waist length, ridiculously thick hair to near baldness in about a week and a half. Sure it was a shock that first day when handfuls came out. But I didn't cry over it. I can honestly say I don't care that much. My only regret was that I didn't just cut it all off at once into a pixie, Hallee Barry thing. That would have been easier to manage. But, I kept hearing about people who didn't lose their hair and you might not lose all of it... blah, blah, blah...

I can see now that people stare when I'm in public. I always wear a du rag or this soft hat thing when I'm out. Hey... my head gets cold. But people stare, or at least look and acknowledge in their minds that something is going on there—and then quickly look away. Some smile with a knowingness. I'm used to being stared at—although ironically, before it was because of my massive hair, boobs or height. Hey I take up space on the planet in many ways... people notice. But the stares are slightly different now. I try to smile back because I know they don't expect it. I'm that way...

I also realize that it makes it more "real" for other people. It's one thing to be told "she has cancer," it's another to see physical evidence of it. Plus, wasn't that always the dramatic moment in the cancer movies? We've all seen the scene—ohhhh, now the patient is bald, they are really sick. Cue the music and the tears... but to me it's a sign of drugs working. The chemo drugs kill rapidly growing cells. Cancer is a rapidly growing cell, so is hair. It's working.

I'm surprised at the amount time I save not having hair. It cuts at least 30 minutes off my morning routine, and I was not a high-maintenance hair type. I was just wash and wear. No blow dry, no curling iron, no straightener with lots of goop. And still that's a lot of time. I'm sort of fascinated by it. How much do those girls that get that bubble-headed hair thing going on spend? Amazing. Oh yeah sure, I get it. Hair is part of what attracts a mate, gets us good attention, good jobs, good whatever... like having a nice car or no beer gut. But really does it matter that much? In the end; we are not our hair. I'm still me.

My son had a little trouble with it at first. He didn't like to see me without a scarf on my head. He still doesn't. So I try to wear a scarf or hat all the time around him. One night while I was getting him to bed he said "Mom, when people are bald I have a hard time telling if they are a boy or a girl." So I said, "do they have boobs?" This made him laugh and he then smiled and said, "Okay that will work." Then he said, "I've never known anyone that was bald Mom." I said "hmmmm… yeah, I guess that's true we really don't have anyone around us that is bald." He says "yeah but now I do... YOU Mom!"

Last night Lee emailed me a photo of his new shaven head. He and Linda decided to go buzz cut to show their support for me. That's so truly cool. Linda let my son do hers. I will add some photos of them to this blog later. Right now my son is bugging me to use the computer.

Linda getting the buzz cut from my son. And let me tell you he doesn't take that bink out for just anything.

After
Lee. This pic worries me a little... I'm afraid it could end up on some weird dating website. I found several such photos of Nate on my computer... hmmm... he may have to retake this with a shirt on... roflmbao <- rolling on floor laughing my bald ass off Gotta love these guys don't you? Thanks.

I’m one of the less than 1%?

2008-05-21T13:38:00.000-07:00

I had another thorocentisis done today. If you have yet to read what that is in my blogs, they stick an alarmingly long needle in your back, between your ribs, and then insert a narrow tube to drain fluid off your lung. Picture a really sharp, narrow drinking straw. It's about the same length, but much thinner. It's rather painless, although annoying, to have done. And, since I can't see behind my back, I can only imagine how freakish that must look having a tube sticking out of your back with fluid running out of it—like siphoning gas out of a car tank. This is my 3rd time. The first time was with Dr. Abdulla in that "Jiffy Lung Lube" office of his. The second time happened while I was under sedation. Today I thought it was the best yet.

It was done by two radiology technicians, guided by ultrasound, nearly pain free, and only just barely annoying. Other than some harsh coughing at the end, it was a breeze. The young radiology women that did it were nice and easy going. Not bad...

They took another liter and 1/2 off of my left lung. It took about half and hour and they entertained me with stories about the mock disaster drill the hospital had just run the day before that included a smoking fire.

They sent me for an x-ray after the procedure. There are some risks with the process. One is, of course infection, but they sterilize etc. and that just never happens. The second one is what they call "pneumothorax." Where they somehow puncture or injure the lung and it causes an air pocket. Basically a hole gets poked in the lung and when you breathe the air then escapes the lung into the pocket area where the fluid now is... but don't worry... pshaah... happens less than 1% of the time… sign here to agree that you know these risks and want the procedure anyway.

I got the x-ray; the x-ray girl said I was "free to go." I was thrilled. That was easy.

We got about half way home when my cell phone started ringing. I saw it was the hospital and chose not to answer. I was feeling too good to hear anything from them. I got a panic message from the radiologist that did my procedure. I was one of the less than 1%. "Would I please call her ASAP? They let me go before she saw the x-ray, I have pnemothorax."

Bummer. I called and told her I felt "fine." She had already panicked and called Dr. Johnson's office, whom, I am guessing, gave her my cell number to try and reach me. She told me they usually resolve themselves in day or so, but could I come back for an x-ray in 4 hours? I told her I couldn't imagine that it wasn't already fine because I felt great, no coughing, nothing. So she agreed that I could skip the 4 hour x-ray but had to come back in the morning for another x-ray to make sure. Sigh...

Then I got a panicked call from a nurse in Dr. Johnson's office. I told her the same—I felt good, really good. She made me promise to go straight to the ER if I had any pain, a rapid heartbeat or started coughing badly. I promised. And please come and get an x-ray in the morning.

So it's now about 9 pm and so far, so good. TC just took our son to the store to buy meat for the grill. Yep, he is going to grill in the rain... lol. It's tough to get my son off the computer... so I took the opportunity and looked up pneumothorax on the 'net. This is not something I want. But I can tell by what I read that mine will be okay or I would be a lot more uncomfortable than I am now... whew.

You know you want to see it....

2008-05-19T14:03:00.000-07:00

It's already growing back. Although, it may fall out again in a couple of weeks.

How I got here from there. Part 7 — The Trailer

2008-05-19T14:00:00.000-07:00

The day after the big meeting I was scheduled for a PET, a CT and that head MRI. The PET and CT were to be done at the same time in that "trailer". I was still mystified by what that trailer could be... and I really didn't want to do that MRI. I called Dr. Alsup and pleaded for some Valium to get me through the MRI. He granted my wish and also offered up some more Lortab... bless him. He told me to take the Valium about 1/2 hour before the MRI and of course that meant I needed someone to drive me to and from the hospital.

Linda recruited Katy. Katy is a young, beautiful girl that looks more like she belongs as a contestant on the bachelor, than running me around to medical tests. She is engaged to my Nephew, Brody, Lee and Linda's last single son. They are getting married in June.

Before we left Katy had to grab a ciggie. I know I'm shocked! People still smoke?? I take the chance on the way to the hospital to give her major grief. "l have cancer—look what I'm going through? And you are doing something known to cause it?" She brushes it off with a "yeah, I know I should quit... and so should Brody... blah, blah, blah..." Her mind is really on her wedding though as the topic quickly changes to how purple are the purple flowers she picked out...??

Finally we arrive at the hospital and drive around looking for a trailer. I see nothing like what I imagine. We park and dash inside to find Wanda. Wanda looks at me like I must be the silliest woman on the planet as she walks me to the window and says "it's right there..." Oh. It's a semi-trailer. I saw it but I thought it was delivering food or something...

I approach the trailer and meet Ahmed. Who will forever be known to me as "Prince Ahmed," because that is what he turned out to be... the most caring medical professional I have met in a long time. As his first act of kindness he shows Katy a reserved parking space where she can put our car, so as not to make us trek the usual block from the parking lot.

Once inside, the trailer is crammed full of equipment. One end has two recliners separated by curtains, in the middle is a bank of computers and the other end has the machine. There is barely room for two people to pass by the bank of computers.

He sits me down in one of the cushy recliners and I explain that Katy was probably going to knock on the door because I thought she could come in with me... he says if she does he will tell her to wait inside the hospital. Then he starts asking me how I prepped for the test. What did I eat? Etc. I can tell he is a little miffed when I explain that "yes, I fasted as I was directed and ate dry toast like they said about 2 hours before." I can tell he didn't want me to eat that toast... lol. So I didn't tell him the pieces seemed small so I had two... I also had to drink two 16 ounce glasses of water within the last 2 hours, which I had done.

He mixes up a concoction for me to drink... more liquid (something that sort of tastes like raspberry chalk). And then as he gets ready to inject the stuff into my veins... he asks, "which side is... IT… on?" I say, "oh the cancer... it's over here." He visibly shudders and says, "I don't even like to say the word... don't say it... I hate it... just tell me where it is..." I'm stunned by this, and I instantly like him. I have been trying not to give my cancer any sort of validation since this started and finally here is a guy that gets it. He thinks like I do. I don't want to validate it because things that don't have validation tend to disappear more readily don't they?

The injection starts and it dawns on me that Katy hasn't appeared. I say something about that and he says, "No nobody has knocked, would have heard her." So I tell him, “ah well, I was giving her a bad time about smoking on the way up so she may have gotten tired of listening to me." He gasps, "She smokes? How old is she?" “I don't know, pretty young, 20's... she is engaged to my nephew." He shakes his head and says, "You know I see more and more young people in here with lung cancer—people in their 20's, 30's. I mean a lot of them." I ask him why he thinks that is... he says, "Everyone knows those guys in their 80's that smoked a pack a day and didn't get cancer, but it's not like that anymore. Young kids are getting it now. I think it has to do with what's in our air. You know it's different than it was when those old guys started smoking. Now there is pollution and I think the lungs can't take the pollution and chemicals in our air and the smoking. Those old guys had clean air when they started smoking... I see it so much, I think that is why."

How alarming is that? I make a mental note to tell this to Katy on the way home.

Ahmed then closes up the curtains around my recliner and tells me to relax for about 20 minutes, I actually kind of doze off. A seemingly short time goes by and he opens the curtains to wake me. He says, "Now I need you to go to the restroom and then we can start the test." Okay. Yes, I need to pee... wow... all that water and then the raspberry stuff. Oh wait, there's no bathroom in here? Right he says. "You have to go in the hospital." My eyes get wide. Remember I can barely walk a few paces without gasping for air, and I have to pee—major. I realize the hospital bathroom is the equivalent of a city block away.

He says "don't worry, I'll take you..." He pulls out a wheelchair, helps me in it and covers me protectively with a blanket. Then he starts on this crazy journey that seems surreal enough to be in a movie. Down from the trailer, across the parking lot, through a service entrance, up a freight elevator to an unmarked door. I'm giggling and amazed. I ask him, you have to do this every time? "Yes," he says, "And before I took the sign that said "restroom" off this door, my patients often had to wait for someone to get finished inside. So I just took it down one day..." This is the first of many times I find myself saying, "you are a prince, Ahmed."

When I come out of the restroom I am full of questions. "How do you do this in the snow? I mean this is Utah, we have wicked weather here. Do you tent this off or anything?" This gets a laugh from him and he says, "No we put on a lot of blankets and run like hell."

Why the trailer anyway? Can't he get an office? He explains that just the trailer and its equipment cost 3.5 million dollars. It's expensive medicine. In order to get a department he has to first kick one out—the hospitals are full. Or they would have to build one on for him. In order to do that he has to get to a point where one hospital would have about 10 tests per day. And he's not there yet, plus that's the kind of thing he doesn't want to wish for... so he travels from hospital to hospital. A couple of days here, a couple of days in Salt Lake and so on...

He's a maverick. I just notice the scuffed up cowboy boots and jeans he wears under his lab coat, and even that fits him.

He gets me inside and offers me yet another raspberry shake. Says to drink it and as soon as I am done we will start. He jumps over to his computer and says "oh you have an MRI at one?" Now, at this point I cannot imagine doing this MRI. I have already decided to reschedule. I don't care—not going. So I tell him I'm planning on cancelling. He says, "I can hurry and get you there…I'll take you there..." "Nope. Not doing it". Then he brilliantly suggests that he can do my head too. What? “Yes.” He can do the same thing with his machine by just including my head—will only take about 10 minutes longer. I am so overjoyed I almost tear up. Thank God. Yes, please do that Prince Ahmed. My now hour long torturous MRI laying flat on my back while I can't breathe has just been reduced to "another 10 minutes."

"I'll call and cancel for you." He gets them on the phone and I can hear a slight battle on the phone. "No she will call you and reschedule… no she's tired… no you cannot talk to her, I want her quiet for my test… you can call her... no you can't… bye." Is this guy a saint or what? I'm stunned by his compassion and kindness. Ironically I can hear my cell phone ringing... I know they are already calling to reschedule. What's up with that?

Finally he lays me down on the machine and the test starts. It's a comfortable, padded, non-claustrophobic ride. I am struggling to breathe a little, but I can get through it. Plus, I know it's only about half an hour and no MRI after. This I can do... no problem.

My test is finished and I can see Ahmed pouring over his computer, as a newly arrived assistant helps me gather my things. I once again thank him and say "you are a prince Ahmed... I'm sure I will be seeing you again." I see his assistant grin and I realize he probably gets called similar things all day long. An elderly lady is now waiting for her test and it dawns on me that people get wheeled out of the hospital from their beds to this trailer too. And that he treats them all with the same dignity.

I find Katy reading in the car. I happily announce that we are free to go, and I am so glad because I am wondering if I will make it home before the slight cramps in my stomach turn into a big problem. I tell her what Ahmed said about young people getting lung cancer. She relates, but not in the way I'd hope. Of course she has a Grandpa like that, "he's in his 80's, smoked forever, never had lung cancer—has had every other kind of cancer though—but not lung cancer." I feel the argument is lost.

Besides, she is now more focused on the fact that she just drove by their house and Brody is home and shouldn't be. She tries to text him while driving and weaving around in her lane. I make her stop. "I just got out of the hospital I don't want to go back." She says, "Okay, I'll only text at the light."

Oh to be young again...

It's now Thursday afternoon. I have my surgery scheduled for Monday to get the port put in for my chemotherapy. I just have to wait for the results, if they find cancer bothering my bones in a way that could weaken them the plan changes. Then they will start radiation first and look at if any other the bones need surgery to be strengthened so that they don't get me cancer free only to have such a weak pelvis or something that it breaks down the road. Sounds awful, doesn't it? I'm praying for no weak bones to show up. I will hear from them tomorrow.

The 3.5 million dollar trailer.

How I got here from there. Part 6 - The big meeting

2008-05-14T10:21:00.000-07:00

I am here at the cancer center getting my 2nd chemo treatment. Plugged into the IV and drinking it down. They just gave me a big dose of Benadryl and some muscle relaxant to bring my blood pressure down. It was up this morning. I will tell you why in another blog. My pressure isn't a problem; I was just a little hyped-up and laughing. The result—they want me calmed down. I may start flying a little. So if this section gets a little goofy play along with me before you read it. Leave your computer and go take a big dose of Benadryl and some Xanax or equivalent, wait about 20 minutes and then read. And I find that when I am juiced up my spelling takes a crazy turn—so bear with me if you read this before I get a chance to edit it with a straight head.

And now—the Big Meeting. The tumor board met the morning after I had my MRI. It was a strange feeling. You know that feeling of "oh... someone is talking about me." I imagined them with slideshows of my x-rays and biopsy results, using the Socratic Method to present ideas and passionately arguing how to best treat my case. Picture a scene from the PBS series The Paper Chase, if you remember it. Only instead of law students and a slick harsh law professor it's a lot of doctors and one mediator, my Breast Care Manager! That was a fun and comforting thing to envision. Although I'm sure it was more like a round table with donuts, coffee and sprite. Most likely some conversations about golf and church were in there too...

The meeting was going to be long. I was warned and prepared for it. Still expecting that same scene of arguing, fired up attorneys, I brought a ton of my own information, should I get a chance to argue my "case." My brother brought a tape recorder. Brilliant idea eh? It was Linda's idea. That way she could stay with my son while Lee took me to the meeting. (BTW; if you can't tell the classes I took that used the Socratic Method were my favorite. I have a knack for arguing a point to death impromptu... so it was fun and easy for me.) I can understand why my mind went that direction. I miss that action a little and I have to be careful not to play it out with my friends.

The meeting was fairly early in the morning. I think we had to be there at 9... but let me tell you; we didn't get home until after 7. This was an all day adventure. Wanda the BCM (Breast Care Manager—I've decided to give her an acronym for cool) greeted us when we got there.

She took us back to a room to wait for the doctors. Hmmm… the room is a regular exam room. No slideshows, no desks or tables set up in Socratic design so I can set up my case and present it to the professor—just a room, a couple of chairs, an exam table, a sink... just like your normal doctor’s office. Obviously my creative mind went way off the track... lol.

Wanda explained what would happen. Each doctor would "come in and take a little while explaining what they would do in my course of treatments and what their ideas and recommendations are... of course I am in control and can refuse or accept or suggest a different course."

Wanda is wonderful and sweet and good at her job. I like her, but she started freaking me out. She was making small talk and saying things like "a lot of my women come in here and want their surgery right now… some of them in your position have both breasts removed… and their ovaries... and a mastectomy... well I know mastectomy is an option they will present to you in your case... oh I guess mastectomy is always an option..." She said a few more things but my mind was stuck back on both breasts removed and ovaries. OMFG!

I expected a suggestion of surgery, although surgery right away wasn't in my case plan that I had arrogantly worked up on my own. I had studied my own cancer, via the internet, and drawn up my own course of treatment based on what I knew at the time and what I had read on the 'net. Be warned—that is a good thing to do, but can also be bad. There is a lot of old information out there and a lot of highly opinionated info out there that has more to do with making a sale of this or that. You really have to take your time and evaluate the information you find.

We waited for some time for a doctor to come in. Finally Wanda came in with some candy... see how great she is? Candy. She said the first doctor was still in a meeting so she was going to juggle the schedule a bit and send in the genetic specialist first.

The gene specialist started asking questions about cancer in my family. That was a big whoop ass can of worms... I figure that now that I have a Hulk hair du I can use wrestling lingo right? It's hard to remember my mom's side of the family. Who died of what? It seems like there was a lot of cancer. My mom was a cancer survivor; she had uterine cancer a few years after I was born. I think a couple of her sisters had cancer but I don't know what kind. Since my mom's cancer was uterine and not in her ovaries they don't think I have a cancer gene. Sometimes breast cancer and uterine cancer come in clusters in families. They do a lot of genetic tracing and study here because Huntsman, who founded the cancer, finds huge value in studying the genes that case cancer.

We can't think of any other breast cancers. Then she drops the big one... "Do you have sisters?" Uh... that topic deserves its own blog. Yes. I have two older sisters. I love them. Haven't spoken to them in over a year. (Read more about that in my blog called "sisters" when I get it done.) She asks if I am "going to tell my sisters." Uhh... probably… at some point... I don't know? Then she asks "if this happened to one of your sisters would she tell you????” uhhhh... I don't know. I think so. I don't know. Lee thinks yes. We would know. All in all it's an uncomfortable conversation. Even though she doesn't believe I have the gene, she wants to do a test. I tell her to call my insurance company and if they will cover it, I will do it. Her part of the show was done.

Next came in Doctor—oh the Benadryl is working… I can't remember who was next… I think it was Dr. Alder, the way cool surgeon you read about earlier. This is a surreal moment for both me and Lee. Dr. Alder was our father's surgeon and was very involved with his course of treatment before he passed away about a year and half ago. There were things Dr. Alder recommended that Lee and I felt good about, and so did my Dad... there was a lot of family disagreement surrounding these recommendations. It only added to the acid in the gut feeling to once again see him and be reminded of that. It was difficult. But at least we knew him and how he worked and basically how he thinks in certain circumstances.

He describes my tumor to me in a way I hadn't heard before. He says I have a tumor that has attached itself to my chest wall between my breast and the chest wall that is growing out into my breast and has also invaded my lymph nodes under my arm. They are not yet certain if anything has gone further but there is great suspicion surrounding my lungs.

Dr. Alder says his part in this process will be to put in a port-a-cath so the chemo can be done more easily. I react to that with some squeamishness— a rather permanent place to easily access my main artery? Wow. Then, as he explains what it is and why it is needed, I don't feel so bad. Plus it’s just a quick out patient procedure, under a light sleep. And maybe they can get the pulmonologist to do this wonderful procedure to get the fluid off my lungs and seal up that area so it won't come back. He thinks they can do both at the same time. This is sounding really good to me.

He finishes his presentation, then, oh yeah, I almost forgot. He asks if he "can examine my beasts before he leaves?" Um... okay. My brother runs from the room as if it is on fire. And thus begins the day my breasts have been touched by more strange men than in my entire lifetime.

Notice there was no mention of removing breasts? No mention of removing both breasts and your ovaries and any other potential organ? Whew. I'm still wondering some about that as he and Wanda are discussing schedules and when can he do my port, etc. He says he can do it the next day.

Wanda comes in and says their doing it the next day. I protest. I have a very important meeting the next day. Can't we do it Friday? And I get what is the first of many assumptions that I can "take sick leave," "explain to my employer, yada, yada, yada." I'm self employed. Who do I explain this to? Myself? She goes into this speech of "now Londy you have to take care of yourself, you need this time to take care of you..."

I think taking care of my business is an important part of taking care of me, and my son. It's hard to get people to understand. Appointments start getting booked left and right—many without my consent to or checking to see if I can even come at that time. Not just here but Dr. Abulla had been making appointments on his own for me, so several of them were duplicated. I just can't seem to get anyone to understand that I have to arrange child care and be in a position to leave my business without dire financial complications and have a ride lined up, if necessary. It got crazy.

Next up was Dr. Johnson, the oncologist. I found out pretty quickly that he dislikes being called "the chemo guy" because he now uses so many more anti-cancer drugs that chemo is just one component of what he does. When I then call him "my drug guy" he laughs and goes a little red in the face. He says that first of all we need a couple more tests to "stage" where the cancer is. Depending on what he finds he will map out his course of treatment. One path would be heavy duty chemo/drugs with surgery and then radiation and go for the "cure". The other path would be chemo/drugs to see if we can shrink down the tumor hopefully to get it to a point where it is very tiny and then use surgery and maybe radiation, with some sort of anti-estrogen for the rest of my life. The latter path is more designed to give me a "better quality of life" and also to add "years and years to my life…"

I was instantly comfortable with the chemo first approach—I had decided that in my own course of treatment. It made sense to me. Get it smaller first, smaller surgery is better. He also explained what type of cancer I have. It's called HER2+ which is a very fast growing cancer, but they have a very effective drug to treat it now. And it's also estrogen based, so anti-estrogen therapy will keep it in check once it's gone. To me this was good news. And also something I had thought I might have when doing my own research. I would have picked the same course of treatment and the same drugs.

The tests he wants me to take are a PET and an MRI of my head. He explains that the PET is in a trailer and that trailer is only here on Thursdays and Fridays. They need to schedule it right away. The PET will tell him if any cancer has gotten a start on any other organ or if it is "bugging" my bones. The head MRI is to make sure no drifting cancer cells have gotten to my brain. Good to know—yes—MRI.... ??? Not again… No... This time I have to lay perfectly still on my back with just my head in the machine for an hour. Remember, I can't breathe lying on my back... damn.

More appointment setting goes on... the PET trailer... trailer??? Really a trailer? Will only be here the next day and they had a cancellation and can fit me in... she already booked it. Damn again. If I wait it puts off the entire start of my treatment by about 2 weeks. I can tell that any delay is not welcome. They want me on this crap NOW! Okay, okay... I can see why... no problem... I will try to handle it all biz wise... it will be fine. Then Dr. Johnson says...

“Oh and btw; is it okay if I examine your breasts?”

Next comes Dr. Goff, the one that somehow magically replaced Dr. Abdulla. I don't know why. They are as different as night and day. Dr. Goff is calm. And compared to Dr. Abdulla is a diplomat that could bring peace to the Middle East... not that he would want the job. He says what he wants to do is drain the fluid off my lung and then perform a procedure that will seal the opening so the fluid cannot get back in there. This sounds wonderful to me. Only catch? He is leaving for a conference on Monday so he can only do it on Thursday or Friday. Oh yeah, you also need to plan 4 or 5 days in the hospital... it's not the outpatient thing like I thought it was when I heard Dr. Alder talk about it. More appointment scheduling changing and arranging going on in the outer room, then he says…

“Oh and... do you mind if I examine your breasts?”

Next up is Dr. ?, another forgotten name... I'll try and fill it in when I get home. He is the radiologist guy. He is a tiny bit too GQ for this group. He slides in like his expensive loafers are a little slippery on the bottoms from being new. He explains his role and sort of blows himself off because he doesn't fit into now what is "my plan" until much later down the road... like 6 months or more. He gives a very short explanation of how the radiation works. Short visits; daily till done. Then he is out of there.

Except... wait for it... you know it's coming... "Oh, may I examine your breasts?"

I sort of laugh at this one... can't help it. Lee dashes for the door. The doctor in his defense says "I just want to see them while they are still intact." This has me nearly in a laughing fit. He laughs too. While examining them he says "oh, this is hot..." I nearly fall off the table laughing again. He wasn't trying to make a joke. He was referring to my breast that recently had the biopsy and is slightly warm while it is trying to heal. I don't think I can take any more... it's too weird, too surreal, too much.

Finally the show had come to an end. The appointment negotiations are complete. I have to come and get the PET test on Thursday—which is the next day. The MRI was scheduled for right after; Dr. Alder won't do surgery on Friday. So they have to push the port until Monday. Dr. Goff will be out of town, so oh well… you will miss having that done. I ask about doing it later and get a "maybe," but someone can always just "tap" the fluid if I need it... damn... I need it now. So they decide to send me for a chest x-ray before I go so we can get on it. So this really long day continues with hassling to get an x-ray and also a pre-surgery blood draw.

They gave me a ton of books to read through. Sorry for yet another college analogy, but geez... it really looked like I just signed up for some sort of 2 year degree. Three ring binders, books, publications... they seemed endless. They also give you a nice little pink rose with your books. Sure, it's funny when anyone gives me a rose. I've learned to examine them and say how pretty they are, no matter how much they suck compared to Jungle Roses!

Wanda walked us down the hallway to where I needed to register for surgery and then to where to go for the blood draw and x-ray. There was a short wait and Lee and I plopped down on a bench to regroup. We were both on overload. I considered skipping out on the tests and coming back to do them, but then I remembered my next day was the PET/MRI thing and realized I couldn't do it. Just then Lee pointed out a young woman walking past us with the same books and a rose. He said, "she looks young." She did look young, barely 30 maybe. And then it hit me—they were probably doing 2 or 3 such presentations just that day. That was the reason for the slightly off kilter spacing between doctors and a good explanation of anyone’s confusion... and there wasn't much confusion at all. But now I understood a little better.

We finally get the last of the paperwork done for the day. After the expected confusion you find in a hospital lab/x-ray department that doesn't take appointments (you just walk-in), I got the required blood draw and x-ray. We were free to leave the hospital... finally. We arrived at 9 and left at 6:30. Completely exhausted and overloaded.

What did we learn? I needed more tests. Then depending on the outcome of those tests there were two courses recommended. Path 1—for if it hadn't spread further, and go for the cure. Path 2—for if it had spread and they want to prolong my life and make me comfortable. Rats.

It was a lot to take. I'm glad Lee has such a sense of humor. On the way home we were talking about it and I said something like, “I'd rather lose my hair and not have nausea all the time.” And with my hair I could lose half of it and nobody would know... his reply? Yeah, unless it is all on one side of your head. I cracked up. Funny.

I was exhausted when we got home. He had a tape to play for Linda so we didn't discuss it much in front of my son. We just regrouped so Lee and Linda could leave and get some rest. I spent the rest of the night playing with Legos and trying not to think about it all.

The next day I had to find that trailer?? Were they serious? A trailer??? WTF??? There were all the sorts of images that came to mind. Mostly I remembered when I was in elementary school and the population grew faster than they planned. They made up for the small building by adding temporary "shacks" outside the school. They were one room things that looked like a big trailer. That was what I expected. Or some sort of big RV...

Here today...

2008-05-13T09:26:00.000-07:00

…gone tomorrow, my hair that is. For the first time today I sported a "du-rag". I have lost most all my hair. It got to where I was carrying trash-can-sized bags of hair out of my bathroom every day. I now have completely bald patches on top of my head, but still enough long strands on the bottom to look sort of Hulk-Hoganish. I must look a little goofy. I had to go have my blood drawn and little kids were looking at me funny. I've been watching the Flavor of Love to see how those chicks wear 'em... but I think the glasses detract from the gansta look a little. lol

Tomorrow I go for chemo #2. Since I will be sitting there for 4+ hours by myself I plan to catch up on my blog—unless of course all that Benadryl makes me too goofy.

The new "du".

Somebody can forget??!!

2008-05-09T13:28:00.000-07:00

Last night the father of my child... whom I sometimes call my "Baby Daddy" because it makes me sound hip and cool—haha—was visiting. Just your normal thing—take out dinner, playing with the Legos. He was saying that while they were out picking up food, our son had pointed out to him the salon where we got haircuts the other day. I cut mine about in half, in an effort to control the evacuation of individual strands that is still taking place. I look different but not dramatically so... I think I cut about 7 or 8 inches off. My son also got a long needed hair cut, and just for fun so did Linda.

Anyway, he is telling our son how much he likes his new, shorter hair. I say "what about mine?" He says, "I think Mommy should get hers cut really short, so it's nice and cool for the summer time." I say "um... it will be," and he honestly says with a little bit of embarrassment. "Oh yeah, I forgot..." Then he laughs... and I laugh.

That gap in his memory was joyful to me. Someone could actually be around me, be having a good time, talk about my hair and forget I have cancer! Someone close to me forgot I have cancer! That was a great feeling. A glimpse of a normal life... it's there.

How I got here from there. Part 5

2008-05-08T14:04:00.000-07:00

I had to cancel my son's 5th birthday party. That was heartbreaking for me. He didn't seem to mind very much... it bothered me way more than it did him. My son is some sort of Lego prodigy. At 5 he can do sets way beyond his age level and can copy just about anything he sees a picture of; his own designs rival those of 13 and 14-year-olds that I see on the Lego website. We were going to have a Lego party, complete with a cake shaped like a huge Lego. I was so sick I could barely walk 5 or 6 steps without gasping for air. Instead we had a small "party" that night with Lee, Linda and Daddy, with a few new Lego sets and a store bought cake. My son was thrilled.

The pneumonia is gone; thanks to some Native American tea that Linda got for me... actually picked fresh from a river bank. A few days of guzzling that and coughing finally kicked it. But I didn't realize that the pleural effusion was creeping back and blocking my breathing again. The breathing problem was so bad I couldn't lie on my back and could only sleep in a strange contorted position on my left side, piled up with pillows. Even then I only slept a few hours at a time.

The day before my scheduled MRI I got a phone call from a very nice woman named Wanda. She introduced herself as my "breast care manager"... huh? My breasts have their own manager now? Man, my mind went soaring about how nice it would be if all my parts had their own "manager"... and don't even get me started on the goofiness of that title. Remember, my breasts always entered a room before I did. I was fully aware that a lot of the attention I had received as a woman was because of my cartoon sized breasts... and now finally they had their own manager! Tah dah!

Wanda was very nice, informative and willing to help with anything I needed. I asked her to meet me the next day when I had to go in for my MRI. Or I should call it the torture device... ugh. That was the most uncomfortable thing I have ever tolerated. It seems easy when you see it on TV right? But when you have breast cancer you have to lie on your stomach and they drop your breasts into these holes... your head goes in this cup like thing and your arms above your head. Then you have to lie really still for nearly an hour... OMG.

Wanda was different than I had pictured her. She came and said "hello" while I was waiting to be called for my MRI. She is one of those really thin women with short hair that wears keys around her neck. Hyper efficient and so nice. I suppose it takes a special person to be a "breast care manager."

Kay had come with me that day. For those of you who don't know Kay—you should. She is one of the funnest people I know. She was my father's "girlfriend" and has become my son's grandmother and a second Mom to me. I love her more than you can imagine. Her humor and attitude got me through the day.

They finally called my name and took me back. I changed into scrubs, which was new to me, but okay. They sort of size you up to give you the right size. They are pretty good at it. I was comfortable. Then they lead you back to the radioactive area... that's an odd feeling. Seeing all those "radioactive" signs posted all over. Then they show you the device. It doesn't look that bad. But I hated it the minute I laid down on it. It hurt like hell. I complained and the technician changed to a "more comfortable" one... like, why didn't you give me the "more comfortable" one in the first place? Duh? The more comfortable one wasn't much better. I hurt.

Once they get you positioned on this strange contraption, the machine moves you into the MRI. Once you are fully inside, the technician comes around to the other opening to hook you up to an IV. The IV shoots, whatever it is that makes the images appear, into your arm. It's an odd sensation as it goes in because it is very cold and you feel the coldness go from your arm throughout your body.

I was in pain. I could barely breathe. I just kept telling myself that I could get through it. The idea of having to start over was a big motivator. They put headphones on you, but they are pointless. The machine is so loud you can't hear them. I never want to have an MRI again.

At the end of the MRI I actually pushed the panic button. They give you a button to push if for some reason you can't deal with it any more and need to stop the test. I found out that they really don't like it when you do this... but I could tell it was the end of the test because the pounding noise had finally stopped and the technician wasn't rushing in to let me out. So I pushed it. She calmly asked what was wrong. I said "are you finished?" She said "yes, I am just looking over the ...." I interrupted her and said "I can't breathe". Wow that got her running in fast. She pulled out the IV and the machine shot me out. I sat up and coughed while she looked over her results.

I got dressed and was happy to see Kay waiting when I walked out. It was a ridiculously windy day and we both giggled as we struggled to get to my car. The tumor board was going to meet the next morning...

One day this summer I am going to have that Lego party for my son. Complete with Lego cake and Legos.

The breast MRI machine...modern torture device.

It’s not just on your head...

2008-05-07T14:07:00.000-07:00

...you lose the hair all over your body. Oh my...

I finally found a picture of the Yew tree. This is the one that Taxol is made from. This is what's making my hair fall out... see how pretty it is???

How I got there from here. Part 4

2008-05-05T11:35:00.000-07:00

Yes, this is such a long story there is a part 4 and be warned; there will be a part 5 and probably 6!

The results of my biopsy came sooner than expected. I was told by the women's center to expect a call in a couple of days. The very next afternoon I got a call from Dr. Abdulla. Since it was Dr. Abdulla I didn't think it was about the biopsy results. I expected the results of his further testing on the fluid. But instead he gave it to me in a blast. I was sitting here with my son and had the doctor on the phone expecting to hear that "inconclusive" thing. Instead I got "it is just as I thought it was, you have very bad cancer…" huh? He got the biopsy result? Yes, he did. And he "was right."

I could hardly say much—what do you do when your 4 year old son is in your lap and someone says "I was right, you have cancer?" I pressed some for details—what did they find? "Cancer in both areas, breast and lymph and I believe you have it in your lung too, it's a very aggressive tumor." I asked if he found that in his tests and he backed up a bit... "No, those were inconclusive but this is consistent with what I see in these cases..." But it didn't show on your tests... "But it's consistent." So I say "but it's fixable right?" He bluntly says, "no.” “But, if we get right on it we can give you some good time." Again I say, “I mean, you can get rid of it right?” He says, "no." What do you mean "no?" He says again, "we can give you some good time." Then he says that he is going to set some appointments for me with the best cancer specialist and surgeon etc, etc. I agreed… I just wanted him off the phone. I still couldn't believe it. And I couldn't really react. I was alone with my son… what do you do? What does "good time" mean? I was too scared to ask. I was frozen and numb.

I sent Linda a text message and she offered to come over later on that night with Lee and help me make some sense of it all. I was completely in shock. They came over after Lee got off work that night. Linda distracted Smokey for a little while and Lee helped me sort out my thoughts. What an unbelievable blow. All I could think about was my son. I could not believe that any God would take me from my son. It was a tough night.

The next morning I got a call from Claudia. She was going to give me the results of my tests. Odd eh? I told her Dr. Abdulla already called me and I was worried about what it all meant. She seemed distressed that he had called me before her. She went into much greater detail about the findings. Yes, they had found cancer in both areas. But, she said I was a "stage 2" and that is was very "fixable". She painted a much more positive picture than he had. She explained that they were going to "present my tumor at a tumor board on Wednesday"... what was that? did I have to be there? Huh? There is a tumor board?

She went on to explain that at the Huntsman Cancer center, named for the famous Utah billionaire who funded it, John Huntsman, they gather up all of the cancer specialists in the area from the local hospitals and without giving away names or personal details, they give all the findings from the tests and let each specialist explain what treatment they would suggest. Then in a few days time I would get to meet with them and they would go over those options with me and I could choose which way I wanted to be treated. That sounded so good to me. I was in control of my treatment and I was getting the benefit of all of the specialists in the area in one fell swoop. I felt immediately comfortable with this idea. Plus, she said I was "fixable." Whew.

She reminded me of my MRI appointment which was coming up. They wanted the results of that before the board met. The tumor board was scheduled to meet the morning after the MRI.

To read more about the Huntsman Cancer Center visit www.hunstmancancer.org. I am lucky that they also work out of the hospital that is near me.

To read a little about Jon Huntsman, this is a short article about him and his work http://deseretnews.com/dn/view/0,1249,270019062,00.html.

In my shower today...

2008-05-05T04:01:00.000-07:00

I lost about 30 handfuls of hair. Wow. That somehow makes it more real, doesn't it? Of course with my hair, that still leaves me more than most people have... but it's going.

I think today will be the day I get a shorter haircut. I think that will make it an easier transition. Plus, those 3-foot-long strands of hair clog up the drain.

How I got here from there. Part 3

2008-05-04T14:59:00.000-07:00

So now I had to wait to hear back from Dr. Abdulla about the results of the tests he ran on the fluid taken from my "tap". In the meantime I had an appointment scheduled for a diagnostic mammogram that was about a week away. A few days later I got a call from Dr. Abdulla—the results were “inconclusive.” What does that mean? He says that means they have to test some more, but "would I please keep that appointment for the mammogram?" Yes, of course I would.

I went to the mammogram fully expecting to have them find nothing like cancer. The tests on the fluid were "inconclusive" after all. I was squished and x-rayed and all that—then they did an ultrasound. The women were all lovely, friendly and professional. At the end of the ultrasound the technician said she wanted to bring in Dr. Babcock to go over what they saw.

Dr. Babcock comes in and looks at me with that look of fear I have now come to recognize. First thing she says it "can you move this arm at all?" as if I was so ill I couldn't even move my arm. I say "sure…" and move it all around, like what the hell? She looks some more at the ultra sound and then she says "I think you have cancer". I argue again, isn't there any other type of condition that could cause what they are seeing? She smirks. I ask her to humor me... she says "yes there are a few rare endocrine things that could do this." Ah hah! That's it. I tell her there are some strange things that run in my family.

But she says. "I feel very strongly about this. I need to schedule you for a biopsy right away and an MRI as soon as possible. I feel so strongly that I am not waiting for the test of the biopsy to come back before you get the MRI. We need to do this now."

A very efficient, hyper-friendly lady named Claudia comes in and starts asking me about appointment times. Does this day work here, this day there? I'm still stunned. I just do not believe it. At one point she looks at me, puts her hand on my knee and says "I have to leave the room for a minute, will you be okay here alone?" Damn. They really think I have cancer and right now I should be in a puddle of tears. Fools.

They did the biopsy a few days later. That was no fun... worse than a lung tap. But I would say less painful than getting a tattoo, except you don't have the fun of a new piece of art to show off—unless you count the needle holes. They took 4 samples and were going for more when the numbing agent wore off. They had the needle in my armpit and were trying desperately to numb it some more but it wasn't working. That hurt like hell. They said I was "amazingly brave."

They bandaged me up and gave me some ice packs to hold under my arm and breast. Claudia was excited because I started my period and that meant she could schedule my MRI right away. I guess they get a better MRI for this situation if you have recently started your period. Who knew? Claudia is like a Grandma version of Miss Julie from Romper Room. So happy, so friendly, so sincerely concerned. I loved her.

I drove myself home and waited for the results that would come a day later.

How I got here from there. Part 2

2008-05-03T08:40:00.000-07:00

After being sent home with the order to "tap" the fluid off my lung I was miserable. I could barely breathe. Walking a few steps had me huffing and puffing and feeling like I was going to drop over. I called and begged to get in sooner and was slipped into a cancellation a few days later.

Linda drove me to the appointment; we took my son with us. I didn't really know what I was going to encounter. I had been told it was a pretty easy procedure and that I would have immediate relief. I was banking on that. I need relief now.

Dr. Abulla is a short, brash sort of individual. He moves very fast in a frenetic manner doing about 5 things at once. His office is oddly set up with a computer in the center of a hallway and exam rooms up and down the hall. He flits about from room to room shouting directions to his nurses as he goes from patient to patient or to the computer. Often he does not shut the door to the exam rooms leaving you there hanging in whatever state he left you in while he hastily goes about whatever he does. It's kind of like being at the Jiffy Lube.

He took me into his office for a consultation. He rapid fired questions at me about my symptoms. Sort of scanned the copies of x-rays I had taken and then moved me into an office for the "tap". So far, so good. The tap itself wasn't that painful, no big deal really. He was more nervous that I was... afraid I was going to cough. He kept saying "if think you are going to cough tell me and I'm out of here." I was trying to stay in my comfortable happy place, relaxed and letting it go. He was nuts.

He drained more than a liter off my lung when he stopped. He seemed floored. First he showed it to me and said "drink a lot of beer?" because it looked just like beer. A great big quart sized bottle of beer. I laughed—because he expected it—and said "um, no…" He said it looked pretty innocent to him but he would send it out for some tests. And then he started asking around about other things; did I have any other symptoms that were odd? I told him that my breast on that same side was a little swollen; like it would be right before my period would start, but I didn't think it was a big deal. He asked if he could do a breast exam and set forth poking around on my breasts.

He turned pale. The color drained from his face to a ghostly white. He plopped down on his chair and said, "Londy, I think you have really bad breast cancer." I said, “nah, they always do this... they swell up before my period and then go back down, and besides there isn't a lump.” He said, “I think it is bad breast cancer and it has spread to your lung and that’s why there is this fluid.” I still didn't believe him. He asked if he could schedule a mammogram and some other appointments for me to check it out and I said "of course," still thinking he was totally nuts.

Then I got ready to leave and joined Linda and my son in the lobby. Linda grabbed my purse so I didn't have to carry it and went to get the car. I couldn't react to what he had said in front of my son. I didn't know how to react... ??? I got a few feet down the corridor when the coughing fit started. I began to cough so badly I could barely stumble down the hall. I had to turn around with my son and go back to Dr. Abudulla's office.

The coughing was so violent I couldn't speak. They pulled me back into the room for x-rays to make sure nothing bad had occurred during the "tap". He let me cough and cough. Finally he told me that it was expected that I would cough for about 20 minutes or so... he offered me a shot of morphine but then backed out because he said he thought I was driving myself. I was wondering why this guy let me leave to drive home with a child without warning me I would cough like this? huh? None of this helped his credibility with me and made him even less believable.

After about half an hour the cough calmed down enough for me to explain to the nurse that I had to somehow find Linda. She suggested putting me in a wheelchair and going down to the entrance to find her. The nurse pushed me and my son through the hallways in search of Linda, and I learned a good lesson—never let someone take off with your cell phone. And of course Linda's cell phone number was stored—you guessed it—in my cell phone. We finally found her, surrounded by security guards that she was enrolling in a search for me.

I managed to get home and made a dash for the bottle of Lortab that kind Dr. Brown had offered to call in for me a couple of days ago even though I didn't know why, but hey, when a Doc offers them you get them right? Now I knew why. The Lortab calmed the cough and I was able to settle down some, but I still wasn't breathing much better. The instant relief I expected wasn't there. I think I still had some pneumonia or virus of something. I felt sick. Plus, now I had a couple of days to wait while Dr. Abdulla got the results of the tests on the fluid he extracted... cancer? No freakin' way... I did not believe that was possible in any way. Had to be wrong. Just had to be wrong.

Thoughts about Life

2008-05-02T13:32:00.000-07:00

Now that I am faced with a life threatening disease I can't seem to shut off my wandering thoughts about my life plan. I have always tended to believe that we come to this incarnation with a purpose and a roughly mapped out path of how to accomplish what we need to do. I can go on and on about "why" this challenge came into my life... but that's not the direction my thoughts have gone today, instead:

I remember when I was a 20-something hot shot. I used to get courted by corporate headhunters quite often. I had a knack for selling. I was in a position where I was the top salesperson in a high-profile company. Plus, I was confident, young, single and well.. sorta cute. I enjoyed having these commission hungry corporate vultures try to recruit me. I never intended to leave my job; I just liked listening to them flatter me.

At some point they would ask something like, "where do you see yourself in 20 years?" This was supposed to lead into a presentation of their company’s retirement and stock options. But my answer always confused them. I would reply in all seriousness, "I don't know… I don't see myself here that long... I have no mental picture of my life much past 40..." Sadly that was true. It didn't alarm me like it should have. It seemed to me just logical. It was very hard for me to imagine my future past about 40. That haunts me now.

All that changed when I began to want a child. Now I see myself way past 40 watching my son do whatever amazing thing he is here to do... I can't bear the thought of not being here with him. And I can't imagine being anywhere other than right here in my beautiful Utah community making a home for us and being with my family. I could go on just like I am for many, many years to come and be so completely happy. I find joy in every day. This change for me happened years ago before I heard the word "cancer" in reference to myself. It came when my son was born.

When I was 25, watching the leaves bud on the trees and the birds return for the summer was a yawn... now I see it all so clearly and what a miracle all of nature is... how did I miss that??? What the hell?? Was it playing with Barbies that shaped what I thought was important? I don't know; but I feel like I missed out on a lot while I pursued stupid stuff. It was that damn movie, Wall Street... greed is good, 80's bullshit. What a waste of precious time.

When I was an undergraduate at Weber State University I had a quirky professor named Lyle Crawford. He once made us write the story of our own deaths. Then we had to read them aloud to the class. I remember in particular one sweet, rather shy girl's story she read so seriously. In her story she died a slow death from cancer. I particularly remember her words "my suffering was eased by being surrounded by my family and friends". I thought I was going gag and puke right there. Okay—remember I was waaaay young then. My story on the other hand, actually made the professor laugh out loud. I wrote a story of buying a new expensive sports car, racing down Pacific Coast Highway at speeds well over 100 MPH then having a brake failure and plunging to a painless death at the bottom of a cliff. The professor said that spoke a lot about my "personality".

Dr. Crawford went on to become famous for refusing tenure saying it made professors "lazy" and for giving up all of his possessions to live in a 1 bedroom apartment with a bankers box for his clothes, a sleeping bag on the floor for a bed and a bike for transportation. I don't know if he still teaches at Weber. Oddly, that's about the only thing I remember from his classes.

I no longer have a sports car. I'm very happy with my modest SUV and just to be safe I'm never going to drive down PCH in a sports car.

A full week

2008-04-30T13:24:00.000-07:00

It's now been a full week since my first chemo treatment. Oh my... I didn't know what to expect. It hasn't been anything like what I remember from the After School Special though, not that dramatic. But it still kicked my butt. For the first couple of days I was zooming—big time. All those steroids to prevent allergic reaction had me wide awake. My resting heart rate was 96. If I walked more than a couple of steps I was panting like a dog. It was hard to talk, hard to do anything, except sit still and feel my heart racing. Thank you to my friend Rachael who stayed up with me via telephone until the wee hours of the morning listening to my ramblings.

Soon enough though, the crash came. My legs felt like they weighed 200 pounds each. I was more tired than I ever can remember. And the weirdest, grossest crap I had ever seen started coming out of my nose. I suppose since chemo makes rapidly growing cells die off, and the nasal passages are full of those rapidly growing cells, it makes perfect sense. But holy cow... I must say—I can breathe better through my nose now than I ever could.

That extreme tired lasted a couple of days and then came the pain. Aches and pains like the worst flu pain ever, times 100. Just shifting my weight in a chair caused my muscles to screech out in protest. This is when I started to think about what a great medicine Lortab was, and aren't those drug companies doing some good out there? Yes, Lortab became my best friend.

Finally the aches subsided for the most part; although those sneaky bastards still seem to come back around 4 a.m., most likely just for the amusement of waking me up so they can watch me stumble to the kitchen for a pill. Which wakes the cat who wants to go out, and then I need to eat something so I don't get nauseated by the pill, and then I compulsively check my text messages and respond to TC who texted at 3 a.m., and then the cat wants back in, and well... I get back to sleep for an hour or so around 7 in the morning.

My nose stopped producing baseball sized out castings, and I have a tiny bit of energy back. My fingers and toes are tingly—a somewhat expected side effect, but not as much today as yesterday. It's weird though since I work with my hands so much, it's an odd sensation.

My son has been very patient through this whole week—a few bribes with new Lego sets have helped. He is so used to me being able to play with him constantly; it's been a big change for him. He loves playing with Aunt Linda though... even if her Escalade is "too cool" for Mommy to ride in.

Honestly—I can feel the medicines working. I can see changes.

How did I get here from there?

2008-04-29T08:50:00.001-07:00

It's a good question, and one everyone wants, or at least seems to want, to know the answer to. "Did you just find a lump?" "What happened?" "I'm shocked, how could this be?" All valid questions I've been asked when I explain that I have cancer.

I guess if I had to pick a time it all started I would say right before Christmas this past year. I had hired a new nanny who seemed to bring every damn germ in the valley into our house. We got flu after flu after flu, and then some more flu. Everyone was sick, not just us, it was the whole community. Everyone had some sort of bug and was coughing, hacking and/or vomiting. It was also a stressful time for me. I had a lot of holiday business and new family traditions to make, since my Dad is no longer with us. I got sick too. I just never seemed to get better.

Finally in January I went to the Instacare. Sure, not your best bet, but I just thought I had a cold that wouldn't go away and needed some antibiotics. The doctor there said I had pneumonia, gave me an inhaler, some seemingly way overpriced antibiotics and sent me home. To give him credit, he did take a chest x-ray to confirm his diagnosis and said I had a "little" fluid on my lung that should go away when the pneumonia subsides, but that I might want to get it checked in a few months.

I went in again right before Valentine's Day, I'm a florist, my life revolves around holidays—Valentine's Day, Mother's Day and Christmas. Must not have been a long enough dose of antibiotics. More antibiotics, more inhalers. I actually worked through Valentine's Day with pneumonia. I was short staffed, having had a blow up with Nate, but thanks to my family, who stepped in to help, we did okay. But I can't say I was "getting rest..."

Again a few weeks later I was back at the doctor’s. Must be "atypical pneumonia" he declared while handing out some different antibiotics and more inhalers. I kept getting better to a point, but then it would always get bad again. Hard to breathe, coughing. Have to give the doctor a break here because the flu in our community was just like this. It would be bad, go away and then return with a vengeance. Everyone said "watch out it comes back..." so it was easy to see that with me too. And honestly I probably did have the flu and pneumonia—just a whole lot more underlying it.

Finally in mid-March I could barely breathe at all. I gasped for air even walking just a few steps. I loaded my son in the car and we went to the Instacare again. This time they quickly put me on oxygen and shut me in a room. I saw a different doctor this time. One I had actually seen every now and then for the last 10 years or so. I usually ended up seeing him when I would have a minor sinus infection or a hair fracture on my foot. He knows me fairly well. After he complained about my being in Instacare—instead of with my family physician, whom I couldn't see for another week, and a few other random bitchy complains about his clinic in general—he settled down to business and read my history beginning with the first of the year. He didn't buy the pneumonia diagnosis and decided to dig deeper.

He brought in everything he could think of: EKG, x-rays, oxygen, nebulizer breathing treatments. I started to feel better. I had oxygen in my blood; the breathing treatment had opened up my lungs and I was breathing somewhat deeper. Then he brought in the x-ray result.

There was a large accumulation of fluid on my left lung. So much so it looked like more than half my lung was constricted by it. He handed me a paper for something called "pleural effusion" with a doctor’s name, "Abdulla," and the words "tap it". This was a punch in the gut for me. My father had the same problem shortly before he passed and was seeing the same Dr. Abdulla... and I remember them "tapping it." The appointment coordinator was to set an appointment ASAP for me to have this done. Unfortunately, ASAP meant 2 weeks, I was miserable.

I have to express great appreciation to Dr. Frank Brown here. While I always found him quaintly quirky and sort of goofy—in that big dog, small cage sort of way—his relentlessness and refusal to "just send you home with more antibiotics" lead me to what is now saving my life. I will have to go back and thank him in person; if only to watch him blush and stare at the floor.

Just don’t lose any weight Londy...

2008-04-23T14:01:00.000-07:00

Here I am today. I am in the midst of my first chemotherapy treatment. I have cancer. I will tell you how it all started and what I have in coming blogs.

I began the day with a large dose of some sort of steroid to make sure I don't have a reaction to either of the drugs I am taking. Once I got here and filled out the same paperwork for the 100th time, they weighed me, measured how tall I was, and took my blood pressure and pulse rate. I was quite amused when the nurse mistakenly said my weight was 50 pounds less than I am... um, not since high school.

My oncologist finally came in the room some time later—at just about that point when you start to sigh from waiting so long. He is sort of what I would call a "cool nerd". In other words you won't see a picture of his shoes in GQ; but his brain is huge and you just want to start asking him every question you can think of asking. He is a very calm, cross all the T's type. Not easily riled—although I did get a big reaction when I asked about getting tattoos or body piercings during chemo.

The best news today was that I have no bone damage. Yesterday I received a series of x-rays to make sure the cancer had done nothing more than "irritate" my bones. The only thing they found was a rib fracture that was old and apparently mended. What the hell? I broke a rib and don't remember it? How'd that happen?

Being given the all clear on the bone testing, I was good to go on the drugs that are now being forced into my chest. I have a port-a-cath inserted directly over my right breast. You can definitely tell the surgeon was a man, because it is right under the spot where my bra strap rides over the shoulder—great... more bra problems. Okay I’ll give him credit that is probably not on his mind when he is performing the procedure. Plus, he was nice enough to drain the fluid off my lung again even though he was not asked until I was in the operating room securely attached to that heated table. And Dr. Alder is a MASTER SURGEON. No doubt about it. (Gotta be nice he may be doing more surgery on me down the road :) That doc Alder is so damn cool!

Still, I have had problems finding bras that fit and are comfortable all my life. Naturally large cup with small rib cage... sigh. Now I get to add that with a weird strap placement. Everyone says "go braless," um yeah… except the women who have naturally large ones—they give me sympathetic looks. When I was pregnant my size zoomed all the way up to 36K... no kidding. I had to order them on the internet. Who buys these? A few of those enhanced to watermelon size porn stars? Oh sure tons of 56K's out there to buy... you can visualize that image can’t you??? Well, here I am complaining about bra sizes while trying to kill the cancer in my breast. Ironic eh? Actually, when I am through with this I will be happy with any size I have left—whether it is none or some or a lot...

Today I am getting a drug called Taxol, which comes from some tree or other. I'll have to look that up sometime and see which tree is saving my life. One day I will find it and hug it. I will be a literal tree hugger. The oncology nurse said that it is delivered in an oil substance of some kind and that people might be allergic to it, so they also give you a huge dose of Benadryl to counteract that possibility. So they got me all up and zooming with the steroids and then made me all woozy with Benadryl... next will they give me more steroids to bring me back to normal? I don't know... right now I just feel drunk.

In fact, just before I started writing this I had to pee... no big deal. You just have to drag your pole with the drip on it with you—roll it down that short highway. My lame joke about not giving away any pole dances was met with a red face. My stumbling down the hall nearly wrecking, got about the same reaction. But the nurse was quick to help me, saying "you don't handle your Benadryl well do you?" Well no, I guess not. A little more drunk pole driving, and I was back, secure in my recliner.

Thank goodness Lee was able to come with me. I don't know what I would do without him and Linda’s help. Holy crap. I take back all the times I called him a "stupid head" when we were kids. Linda and Smokey are at home. She called and said he got the books I ordered today and was excited. I ordered him the Ultimate Forbidden Lego Building guide and a Star Wars guide to create all of the Star Wars vehicles. His two favorite things these days... Lego's and Star Wars.

The second drug I am getting is called Herceptin. It's specifically for people that have my "type" of cancer. It somehow is attracted to only the cancer cell and then it causes the cell to stop dividing and replicating, thus it dies. I've learned quite a bit about those pesky cancer cells. We all search for "immortality" on some level... well, guess what? Those cancer cells have achieved it. They don't die, they replicate. Somehow cancer cells have achieved immortality without gurus or vision quests or anything like that. They just do. So we have to kill them. The battle has begun. Never say "on some level I want to be immortal," ever again.

So back to why I called this blog "just don't lose any weight..." I had that dream moment. I was told that one thing all women want to hear all their lives... "just don't lose any weight Londy." My reach for the sky and exuberant exclamations of "hallelujah" were met with that same sort of red face. Okay, maybe it's going to take some time for these guys to get used to me. But there it is... my green light to eat without worry of gaining weight. Okay bad reason for that to happen, but when in this position you take what you can get.

If I look scared, it's because I am...

My oncologist, Dr. Harold Johnson. He agreed to be photographed for my blog as long as he didn't have to wear a pirate hat.

This is Susan, the oncology nurse, uncovering my port for the first time and preparing it for all the fun to come. She asked if I could get a body double for her for this photo, maybe a playmate or something? She is very sweet.