Financial Hemorrhage

"Hi, I need to renew a prescription ..."

-words repeated much too frequently
-the primary cause of the hemorrhaging of money
-why my pharmacists are on speed dial

Two Steps Forward, One Step Back

Ugh. So much has gone on recently. Lots of good news! I went to my usual oncology appointment last Tuesday and my Dr. decided that my body is finally settling to a good place. My blood work looks normal (add squeal of delight here) and that the GraftVsHost has calmed down to a safe point. Safe enough to start decreasing my cyclosporin (anti-rejection drugs) and drop most of the other meds. My body should finally be able to take care of itself!

It was a bit of a sudden occurrence being taken off of so much so quickly. A bit shocking, really. I had mentally come to a point where I was just accepting that who knows when I would ever be taken off all that crap. Life saving crap, that is. I also don't have to go back to see her for 5 months! As I walked out of that appointment, I felt I was walking out a free person. I still have to have my bloodwork taken every two weeks to monitor my progress but that's okay.

To me the mental picture of this moment looks like a runner carrying a torch through the finish line. What a looong haul this has been. I feel a longer term of hope is seeping through to my consciousness. I can have bigger hopes now and longer term goals. I'm pretty damned excited.

I'm also exhausted. I've been pushing for my doctors to get to the bottom of why I don't sleep so that I can. Nobody can function or heal when they are severely sleep deprived. I had extra bloodwork done and they determined that I am severely menopausal. Severely! Many apologies to my sons for my moments of severe menopausal snarling beotchyness.

My oncologist explained that few people sleep through the transplant process which lasts a couple of months. Mine then probably switched over to chemically induced menopause which for me includes not sleeping. I hear many women close to or into their 50's complaining about the same things. Not fair at 36! Whatever, life isn't fair.

So my GP has switched me over to amtitryptolyne (probably spelled that wrong) to help with my sleeping and to get rid of all my body pain. I was quietly suffering from several types of pain 24 hours a day. Muscle pain, carpel tunnel, nerve pain arthritis etc. Well, just like magic it's gone! I can't even believe all that pain is gone. I also can't believe that I considered that much pain to be the least of my problems, in fact I barely even mentioned it to my doctors. I just thought I had to suck it up. My GP felt I had the body pain because I didn't sleep, therefore my body could not heal. The pain then in turn kept me awake.

Life really can change on a dime. I had been really hoping that my next spin on the dime would land me in a better place. I think I'm heading there.

Because of my night time medication switch I've been deprived of over a week of sleep because the amtitryptolyne takes 4 to 6 weeks to be fully effective. I'm about at 3 weeks now and it has been helping but I'm so tired I can hardly move. I've even gained almost 10 pounds :( That may also have something to do with the strawberry cheesecake slices I've recently discovered.

I feel like hell and have bags under my eyes again but I know that things are going to get better from here. Much better!

Here is the list of medications that are changing and/or have been dropped.

zopiclone for sleep - changed to amtitryptolyne
cyclosporin anti rejection - dropping and will be off in 3 months
fluconozole anti fungal - dropped!
valtrex anti viral - dropped!
septra protects my lungs from pneumonia - dropped!
pariet for acid reflux caused by my other meds - being reduced

prometrium for menopause - will always have to take it
estrogen patch for menopause - will always have to take it

Several people I know have said that I look like me again. They also say my energy has changed for the better. Hope shows.

Amitriptyline Ass Kicking

Well, I've been taking the steps to get myself out of this bone marrow transplanted, DNA switched funk. I've gone to see my GP, been going faithfully to my waterfit class, am seeing a Cancer Agency counsellor and have been trying to be a wee bit more social and have been prescribed more DRUGS. What can I say? I'm a bit of a keener when I think something needs to be tackled. I'm also so freak'n sick of drugs, it's not funny. Now I have little yellow bundles of fan-fucking fantastic delight to add to my arsenal of medicinal bliss.

Just as recently as a few years ago I was a bit of a closeted purist when it came to putting weird things in my body. I never tried smoking and I never touched drugs. Some in highschool may have called me square. It sucks to be them...
but then again I guess now it sucks to be me.

After diagnosis it seems the floodgates have been burst open and the pink elephants have arrived in full fanfare. I was the girl sitting in her hospital bed questioning every pill that came my way. What is this? What is it for? What does it do? What side effects will it have? Do I have to take it? Are you sure I have to take it....really? I was a royal pain in the ass. I did this for quite some time before I realized that they were doing what they had to do for me and I couldn't question every drug they gave to me because it would eventually drive someone mad (probably them).

Next I was the girl with the button for a morphine drip that I refused to press. I had lousy side effects and begged to be put on something else. Then after the something else was worse, (hello big satanic green gorilla with red eyes outside my hospital bed window and flaming green chandeliers on the wall), I begged to be put back on the morphine (hello not knowing which was dream or reality and seeing people who weren't there).

Later I was the woman writhing in pain and begging for the intravenous morphine. At those special points the nurses would actually run to get it. Now I'm the woman who does what she is told and takes the godamned meds. This new one, though, is not agreeing with me. Hell, it's kicking my ass all over the place. The intent of the amitriptyline is to help me to get back into a normal sleeping cycle and to improve the quality of my life.

So far I feel much worse. I guess I'll be giving my GP a call in the morning.

A OK Stamp of Approval

So I had my oncologist appointment yesterday and she says everything looks good! My vagina has turned out okay after the surgery and I have no active signs of graft/vs/host. My blood work looks normal! For the first time in 3 years!

I wasn't even sure I'd hear that said to me again. My brothers stem cells are settling in nicely and starting to get along with me.

I didn't get the big lowering of my medications I was hoping for, which is a bit of a disappointment. She doesn't want to "rock the boat". That's fine except for the steroids make me sick. I'm on such a low dose that most medical professionals don't think there would be side effects but I have them anyway. When they did my transplant they said I was the ward's "Star" patient because I was young, fit and otherwise healthy, which was a wonderful thing to hear! Shortly after that, though, I turned into the problem patient because I had adverse reactions to almost everything they gave me. They were constantly juggling drugs. It was awful.

Anyway, she did say I could stop taking one drug, the steroid. Yay! Last year when I was taken off the steroids for 2 months I started bouncing back quickly. I expect some good results in the weeks to come.

So my medication schedule is going to stay mostly the same. The one difference is that the first row of my pill box (early morning) will now be empty. The rest is still full. I also think that I've found a mistake in my drugs. Mistakes happen often so you have to be very vigilant and aware of what you're taking. I have so many doctors that it makes it hard to keep track of who's doing what. Scary.

I also am well enough now to start getting all of my immunizations done. Apparently that will take a couple of years to get them all. I'm ready to roll!


And my oncologist was very curious about what happened with my vagina and cervix. I'm the human anomaly again. She has never seen a case where the vagina was attacked by the graft/vs/host while the rest of me seemed okay. Very unusual apparently. It's the story of my life. She said she has also has never seen a case where the cervix actually closed over and blocked. At least that means I'm special.

During the surgery they released 250-500 ml of fluid from my uterus which is the same amount as my chocolate milk. I was like the human utero, water balloon.

So I think I will name myself Ms.Spectacularly Unusually Special, for the day.

My New Career

I worry about my future. At 20 I had such grand dreams of going to school, buying a house and having a high powered career. I was just finishing my degree at 32 when I was hospitalized. I was half way through applying for my MBA. Things were looking good until the whole cancer inconvenience.

Fast forward to a year and a half later.

My physical and mental abilities due to treatment are low but improving. I get very scared when I am unable to get out of bed for days. WHY WON'T MY BODY MOVE?

So that leaves me doing things such as plotting relentlessly on what I'll do to improve my situation.

So let's review my skills and abilities. Previously I decided I had all the qualifications to be a paperweight. I think recently I've moved beyond that and am now contemplating on some of my new skills.

Other than laying around plotting, I realized I spend a lot of time dealing with my medications. This is a photo of a days worth of meds.

Some of the meds I have to cut in half to get the correct dosage. That's when it occurred to me...



....I could be a crack dealer.



I'm somewhat excited at the prospect of my new career. I'm sure it pays a lot more than being a paperweight.