Thursday, October 9, 2014

T + 100

September 24th was my weekly appointment at the clinic and day 99 post transplant.  Close enough.  They took the 100-day biopsy that Wednesday and sent it off to the lab and the wait began.  It's typically 2-3 business days to get results back.  There's was nothing in the weekly blood tests that would cause us any concern, so we had been assuming this would just be a confirmation that there was still no leukemia.  But any time you get a big medical test and then have to wait for results, you find that your mind starts to enumerate on the possibilities.  I checked on Friday, no results. That means we had to wait out the weekend.  I checked Monday, no results.  Now I'm starting to wonder if they have results in but don't want to tell me via text and are waiting me out until my Wednesday appointment.  Finally on Tuesday the word came back, the bone marrow is clean and 100% made up of the donor's cells!

On one hand, we certainly felt a great sense of relief passing the test even though we had anticipated those results for a while.  But while there's a lot of hype built up around the Day 100 mark, it's not a finish line by any means.  The more we talk about what's next with the doctor, the more we see it's just a mid-point.  There are two things going on here, the transplant and the leukemia.  They are related of course, it is eventually the new immune system that will keep future leukemia in check.  The 100 day mark is more about the transplant.  So all signs are positive there.  And it's certainly a good thing that there has been no return of leukemia during this critical time.  But, my doctor said he won't feel relaxed until we get to a full year out from the transplant date.  80% of the patients that relapse will do so in the first year.  So if you can clear the one year mark, your odds are very good that you won't relapse and they will continue to improve through year 2 and year 3.  That said, my immune system is still very immature.  The doctor has warned not to let my guard down.  I still need to avoid big crowds, uncooked fruits and vegetables, fresh cut grass, clay tennis courts, etc.

Just as all that good news was coming my way, I started to develop a bladder or urinary tract infection.  They put me on an antibiotic and took a urine sample.  As it turns out, the test results showed that my infection was resistant to the prescribed medicine so I made no improvement over the first week.  They changed the prescription over to a different antibiotic.  This one worked better but had the side effect of dizziness.  One afternoon I jumped up off the couch quickly, went around the corner, and experienced a huge head rush that sent me sprawling to the floor.  I caught the corner of our bureau in the ribs on the way down.  I didn't completely black out and it passed quickly, but I definitely sustained a deep bruise or possible cracked rib in the fall. (it still hurts two weeks later)

The infection caused a rise in my creatinine level which is a measure of kidney function.  All this get a bit troublesome as a urinary infection can back up into the kidneys and blow up into something that would put me into the hospital.  So the doctors put me back on every other day office visits to give me extra IV fluids and monitor the levels.  If you recall, I had my central line removed which has been great.  The penance however is that each time I go to the clinic they have to stick me to draw blood.  Not a big deal once a week, but every other day it starts getting old. Anyway, the extra visits and a lowering of my immune suppressing drug seem to have done the trick and the levels are returning to normal.  If I check out ok on Monday's visit, I can go back to once a week visits and if they hold for a few weeks, drop back to every other week.

So overall it's good news.  I can stop counting days and start counting months after the transplant.  Six months is the next milestone (Dec. 17th). But I can see just how frail the whole system is currently and how easily it can fail.  I've been biking and even trying to jog a little now.  My legs can only handle about 20 minutes of slow jogging at a time.  Joanne and I have hit some tennis balls, again the hardest part is moving my legs fast enough to get into position.  And for some reason, she won't hit them right to me.