Friday, February 2, 2018

A Brief Update

A Very Brief  DGA Update
February 2, 2018

(Just a quick, partial update from my last couple of months [for our non-Facebook friends; they already got this].  I hope to have  more complete update out very soon now that my higher mental faculties seem to be functioning better).

It's very hard to believe that it has been 330 days since my transplant.  Some days it seems as if it wasn't very long ago.  Other times it feels like it was sometime in the last decade.

The last time I sent an update, in October,  I was whining about how lousy I had been feeling for the previous months. Well,  there's nothing like a trip to M. D.  Anderson to give you a better perspective on how you're doing.  And we go there every four weeks at our current schedule.  I've noted this for years,  but no matter your situation,  you'll see folks whose problems are much more dire and urgent than yours.  There are folks missing limbs,  noses,  parts of their faces,  folks with tubes coming and going in and out of random places in their bodies.  Hairless,  emaciated patients huddled under blankets,  people carrying barf buckets with them in their wheelchairs.  

I really have no problems. 

Since my last message I have improved greatly.  I'm not yet well,  but much better.  I no longer feel sick every day.  My appetite has returned  (when we left home last year for Houston,  I weighed about 186; when we returned last September I weighed  164.) I'm still weak,  but stronger.  I'm able to walk more now.  I set a  "PR" yesterday when I walked  1.2 miles,  in 25 minutes.  I know... not very far and pretty slow,  but for a  guy who was in a wheelchair just last August,  it's a big improvement.  

I still have some problems and will have for a while.  I'm still anemic,  and my blood counts are likely to stay low as long as I'm on some of the medications I have to take in order to hold off the graft vs.  host disease rash which had been driving me crazy.  But the rash hasn't returned since August now.  But I'm still taking about 30 pills daily to prevent my body from rejecting the grafted stem cells,  and to prevent the grafted stem cells from rejecting me (with the GVHD). 

But if the the 30 or so pills I take daily,  about 2/3rds of them are taken to prevent side effects of the other 1/3.  Crazy,  huh?   For example,  I take 2-3 Imodium daily to control my gut from the nine tablets of magnesium oxide ( a laxative kinda drug) which I have to take to replenish my serum magnesium levels,  which are washed out by the tacrolimus I take to prevent GVHD.  Or,  I take stuff called Ursodiol twice daily to protect my liver from the effects of another med,  voriconazole (an antifungal drug)  which I take twice a day to prevent fungal infections I might get because of the immunosuppression caused by the steroids and the tacrolimus.  And it goes on.  I recently had to start blood pressure meds when the steroids I'm taking kept causing me to have scary high blood pressure readings (200/120 and such).

But my kidneys are struggling under the loads of trying to process all these drugs and the antibody infusions I've been getting monthly during the cold and flu season.  The kidney functions have been deteriorating almost weekly since October and now are down to just about a third of what they should be for a guy my age.  I really don't want to go through a stem cell transplant only to end up needing a kidney transplant.  Though,  as I've noted,  my stem cell donor would be a perfect match.  Do think she'd give me a kidney too? 😄

The really good news is that over the last couple of months we've been able to stop our thrice daily full-body steroid cream applications,  which were a total pain in the butt,  and we've been able to taper the photophoresis treatments,  which started at three times a week,  to just two times every eight weeks.  I'm hoping we can stop them entirely soon,  and perhaps remove the Central Venous  Catheter from my chest,  going into my right heart,  where it's been for almost a year.  I'm lucky it hasn't gotten infected in all that time.  We've also managed to slowly taper my steroids down to just 5mgs every other day. That's almost nothing.  Hopefully they'll go away entirely soon so we can start trying to taper some of the other meds,  like the Jakafi,  which makes me anemic and has been the cause of all my transfusions.  

One of the bigger issues we've been dealing with recently is just being isolated.  Being so severely immunocompromised,  we stay away from people and crowds.  The flu is rampant in the DFW area and there are reports of people dying almost daily.  The reporters almost always add the comment,  "This person was elderly with underlying health conditions. "   Well,  I've been government certified as "elderly " and I certainly have the worst of the underlying health issues, taking all the drugs,  as I do,  to suppress my immune system. That, of course, makes me incredibly susceptible to just about any virus I may come in contact with.  And if I come in contact with the real  flu,  the H2N2, I think it is,  I'll join those "died of the flu" numbers you see on the local news. 

One last item to report.  Having leukemia makes one susceptible to getting  other cancers.  Being immunosuppressed exacerbates the situation.  As a result,  in recent months I've developed a squamous cell skin cancer on my right cheek.  On my face,  that is....   A biopsy shows it to be a shallow lesion which hasn't spread deeply so we're trying to treat it with a caustic cream called 5-fluorouracil, or 5FU. Kathy calls it "the FU  stuff."  If it works,  we're good for now.  If not,  we'll have to hack it off my face. 

It's always some damn thing. 

And that's a more than complete update on how I'm managing these days.  We'll be going back to Houston again in two weeks.  Hopefully we'll see some improvement in my kidney functions and we'll be able to taper me off some more of the drugs. 

Bye now,  Dave