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

"your heart needs a rest Londy..."

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"

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

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.