Saturday - April 16, 2016
Never could I imagine that so much time would pass before updating.
Sorry but I have been busy coughing - and working - and then coughing
some more. Time for friends? No. Time for fun? No. Too busy
coughing.
Happily (?), this cancer blog appears to be shifting into a
CVID
blog. Of course, I remain profoundly grateful that my wretched
lymphoma remains in remission. Almost four years since that Stage 4
diagnosis and I remain cancer-free! 1 more year and I may be able to
breathe more easily.... But speaking of breathing, that brings up the
topic of coughing and ...
... I am certainly not well. This school year has been an intellectual
and emotional delight but a true health challenge. I have been coughing
(productively) non-stop since Columbus Day. Prior to that I had a good
8 days but had been coughing since the schoolwide Open House held prior
to Labor Day. That's a LOT of coughing and in the last few weeks, I
have begun to feel ... depleted, tired, ready to feel better. Generally
it's just that annoying (productive) cough - especially in the morning -
but there have been some notable highlights such as a very vivid,
eye-catching subconjunctival hemorrhage, a thrown-out back, and a recent
cracked rib. Last weekend, I was coughing so hard I couldn't keep food
down and this weekend I am battling a high fever that has just broken
(that's what 16 hours sleeping and medicating can do!). Joe expresses
frustration that I hold it together for the school week and then crash
on the weekends - he's right. It's how I keep going. I focus on the
fun I have at work and immerse myself in the job to push down concerns
about my health. It worked when I taught through the medical mystery of
my 4+ months of migraines and double vision and it has worked this year
as I simply CANNOT rid myself of this deep (productive) cough. But now
I enter a new phase of medical intervention.
On Wednesday, I begin monthly
immunoglobulin therapy
to bolster my deficient immune system. Since August's CVID diagnosis, I
had months of debate about what kind of infusions to get and where to
have treatment. Joe and I met with an NIH-affiliated immunotherapist in
February. He was very firm that despite my appearance of good health
and excellent (!) lung function (can you believe it? We were ALL
surprised), given my extraordinarily low immunoglobulin levels, I was
risking "catastrophic" results from a swift moving infection. He used
"catastrophic"multiple times even though the first time he used the
word, it pierced my stubbornness and got my attention. "Catastrophic"
is a persuasive word.
So now the paperwork for this immensely expensive treatment has been
vetted and approved by insurance and I am finally on the schedule. I am
so incredibly grateful to all the blood donors who make my treatment
possible:
"Ig is prepared from the plasma collected from a large number of normal individuals, usually between 10,000-50,000, who have been carefully screened to make sure they are healthy and do not harbor certain infectious diseases."
Whatever hesitation I might have felt has evaporated in the face of this
constant (productive) coughing and my growing fatigue. Because I want
the latitude to travel and be free of a weekly medical procedure, we
have decided to go with intravenous monthly infusions at an infusion
center rather than more frequent subcutaneous infusions at home.
Wednesday's first infusion will be an all-day affair and the first of
... well, I will need them for the rest of my life.
So, I have reached a level of acceptance and am ready to share some aspects of life as a
zebra
on CVID boards and sites. I still receive mail from the NHL Cancer
sites and there indeed appears to be crossover between lymphoma and
CVID. It's a chicken and egg situation. Whatever connection may exist
should be more public so I am keeping the blog as one full piece rather
than splitting it into two separate medical journeys.
Relieved to be diagnosed. Grateful to be starting treatment.
Thrilled to stop coughing!
Finally!
Please!
