A clean mind...

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

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"

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

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.

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...

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!

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 :-)

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...

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...

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....

...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?

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.

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

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....

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?

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!

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

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