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
