Limits

I've really been upbeat and positive in describing my health here on the blog because, in the grand scheme of Amyloidosis patients, I'm in a pretty good spot.*  However, that doesn't mean the disease hasn't impacted me.

Probably the worst part is the water retention that has occurred.  I've watched my weight steadily rise over the last few weeks due only to water.  And it's not the simple water retention that diuretics will fix.  It's due to swelling of my internal organs and water retention in the lining of my intestines, stomach, etc.  I asked Al if it would help if I swallowed a few Sham-Wows to let them do their magic but he didn't think that would create the physiological outcome I was looking for.

I've gotten over the vanity of looking 8 months pregnant but carting around this additional water weight is exhausting.  By my calculations, I now have an additional 28 pounds of water I'm carrying around.  I usually weigh about 128-130 pounds but I know I've lost a few pounds in mass because I haven't been able to eat much.  So let's say my true body weight is 126 pounds.  I've been averaging around 144 pounds before the stem cell harvest.  However, they have to give me a lot of fluids to go through the process and I've felt even more miserable and bloated since that started.  This morning, I weighed myself and it showed 154.6 pounds--10 lbs just from the stem cell harvesting.

That's why I've been so miserable and tired.  I have to make some hard choices about what I have the physical strength to do...simple things like going to Claire's lacrosse games--I've missed them all.  So I spend most of my time in bed...keeping my legs elevated and conserving energy.  That is so not me.  But when you're weakened already, hauling an additional 30 pounds around requires tough choices.  My pre-illness attitude of "push yourself and test your limits" has been replaced by "conserve your energy and know your limits."  That's as hard emotionally as it it physically.

But, Monday is the first step in my recovery.  I report to the hospital at 10:30 to have my central venous line placed.  This gives the staff one place to easily put stuff into my bloodstream (chemo and other drugs) and take blood out for tests which will happen multiple times a day.

After that, I go up to the unit and meet with the Bone Marrow Transplant physician and nurse practitioner who will be managing my care during my stay and the primary RN responsible for the day to day care.  In addition, I'll meet with the dietician and social worker.   Gotta figure out when I can squeeze time in for Tami to come give me a buzz cut so I don't have a lot of hair to fall out.

The high dose chemo happens on Monday and Tuesday. The chemo agent I will be getting is Melphalan (which reminds me of the antagonist Maleficent from Sleeping Beauty) and is designed to wipe out the bone marrow in my body.  The transplant should happen on Thursday which, according to stem cell transplant tradition, becomes my new birthday....but I like to think of it as my additional birthday. :)

After that, its make it through the first 2 weeks after the transplant and watch my white counts climb showing the cells are engrafting and starting to do their job.

So, prayers/positive thoughts, etc. over the next 2 weeks that the chemo works with few complications, the stem cells engraft properly and the new bone marrow doesn't produce the amyloid protein.

Thanks to every one who has reached out with kind words and actions.  I owe so many people thank you notes I don't know if I'll ever catch up.  Just now that your love and support is what keeps me going.

*Yes, compared to many others I am in a good spot. However, I can't help but think if this had been diagnosed sooner how much stronger I would have been going into the transplant. If only my primary care practitioner had ordered a urinalysis when I came in on 12/18 due to edema rather than chalking it up to me eating too much salt. The proteinuria probably would have been seen on 12/20 instead of 2/22. Referring me to a nephrologist at that point could have put me 2 months ahead of the game. Yes, I know primary care docs can't go ordering every test under the sun but it would seem reasonable to order an $11 test in that situation. --rant over--