Today is
the “magical” Day 100 & is considered to be a significant milestone by the
doctors so I figured that I should acknowledge it here. It’s
mentioned a lot & some of you might wonder what is so special about it. At this point doctors can tell so much more
about how you're bouncing back from the worst effects of the transplant &
how your immune system is building back up, and can breathe a sigh of relief,
so to speak, if all is going well. It’s typically the point at which the
doctors allow some really back-to-normal living to take place.
One-hundred days ago, Ray & I
were sitting in isolation in the Bone Marrow Transplant ward, anxious but full
of anticipation about the journey ahead. Ray had completed his five days of
intense chemo that had primed his bone marrow for the new donor’s stem cells.
The infusion was quick and simple and uneventful, but the procedure was
potentially life-saving. Sitting there on day zero, Day 100 felt like an
elusive dream yet now it’s here!
Yes, Day 100 is what every bone
marrow transplant patient is striving for because ideally on this day they are
set free from the hospital regimen of weekly blood tests, check-ups and scans.
It means they have got through the 'danger period' and on their way to recovery
and independence. It is the day they walk out of the hospital and get on with
their lives. Today Ray is indeed breathing a little easier. Yet while he is no
longer in the hospital, he continues being monitored closely with on-going
blood tests & check-ups. We learned that although his white blood
count is good now, although it continues to fluctuate whenever medicines are
adjusted, we still must take reasonable precautions to keep him from picking up
germs that would cause him to become ill because he will be on immune
suppressant meds for at least a year or more to prevent his body from possibly
rejecting the donor cells.
We knew
that at 100 days there would not be some magical snap of the fingers and
everything would be back to normal, as if Ray hadn’t even been through the
process. He still has days when out of the blue his body will surprise him with
some new little ache or pain. Just yesterday his foot started bothering him
causing him to limp slightly, we noticed a few new odd looking spots on his arm
& he had some chest discomfort that kept coming & going. That will
probably pass & by tomorrow it may be something else. The truth is that
this is an on-going process and there could still be transplant concerns a year
from now.
Where is Ray
today? First
& foremost; Ray’s MDS (cancer) is GONE!
They tell us that the further away he is from the transplant date & the
bone marrow biopsies every 3 months continue to show no evidence of MDS, the
greater chance that it won’t show it’s ugly face ever again & he can
consider himself CURED.
Now his
body must recover from the process it took to make that happen. Because he did
experience some GVHD (Graft Versus Host
Disease) & was put on a large dose of steroids that seems to have
cleared it up, he now must be slowly weaned off those steroids. In the meantime
there are a few side-effects from that but we’re dealing with them. Lately his
creatinine levels (which indicates a potential problem with his kidneys) are
too high. Therefore he must drink tons of fluids each day to flush his kidneys
in an attempt to keep the levels at an acceptable range. I was taught how to
administer daily IV fluids at home. It takes 6 hours a day to pump those fluids
into him. I’m grateful that we were able to do this at home because it sure
beat spending each day at the hospital. His goal each day is to drink 100
ounces of fluid so that he doesn’t have to continue with the IVs.
Ray still
needs all those baby vaccinations to protect himself because the transplant
wiped out what he had. He received his 1st vaccination last week. We
continue to visit the hospital weekly for his labs as the doctor continues to
monitor things. It’s vital that they head off any problems if they arise before
they do serious damage. Ray’s appetite is getting better & his ability to
eat has improved although for some reason he is losing weight, down 25 pounds
from when he began this journey. He has lost a lot of muscle & is working
on getting his strength back now by exercising a little each day. He’s still
taking a boatload of pills every day, mostly as preventative measures for
conditions that he is now more susceptible to contracting such as pneumonia,
skin fungus, shingles, liver problems, etc. They are now beginning to
discontinue a few of those meds.
Is life
back to normal? Well, our life has a “New
Normal” now & even that is still trying to define itself. There are
lots of things we approach differently now; eating more healthy & avoiding
certain food establishments, a higher level of cleanliness (sanitizing & disinfecting
things we never really worried about before), avoiding exposure to sunlight as
much as possible (it can activate the GVHD), etc. We are grateful for where Ray is now compared
to where he was three months ago. Going through something like this will
certainly cause one to look at life & re-evaluate what is & isn’t
important. Each day is a gift.
Ray’s Day 100 as a milestone is
uneventfully over, but this just means he gets to create another. We’ve learned
that things often don't go as planned. Our journey is like sitting on a raft
being pushed down a river, and we simply have to go where the river takes us.
If we hit rapids, there is no sense in fighting, we simply have to ride it out
and have faith that Ray is going to get out the other side. Notice that I say
“we” because it is indeed a journey we are taking together. Ray is steering
this canoe & I am his rudder that guides him as best I can.
So, we
do hereby acknowledge the 100 days as a milestone, as the journey continues…
