It has been a
challenging couple of months. I
envisioned myself coming back from Denver renewed by the visit and successful
accomplishment of the trip and getting better. Why not? When
this did not happen I followed my Hopkins Physician Assistant’s advice and
upped the steroid level. It was
the doctor’s diagnosis that we had not yet brought down the tumor swelling and
had to hit it harder. I had
resisted this approach hoping that time would be an effective healer. But after so many weeks my healing was
stalled and I was discouraged.
Being a non-compliant patient, when my source of information is 300
miles away, is risky business. I
followed their advice.
If the higher
steroid dosage had a positive effect on the tumor, it has been beyond my ability to
discern. Instead, the mixture of steroid side effects and continued radiation affects have
brought an unintelligible, toxic stew.
I had imagined a graph with two lines beginning in the west. As the Dexamethasone line heads
southeast, I expected the “feel better” line to head northeast.
Unfortunately this
has not been the case. There are
so many factors: the tumor, CyberKnife radiation, swelling, Dexamethasone,
steroid side effects, and who knows what else. Occasionally I have a good day with nothing but the
ever-present disequilibrium and fatigue.
Those days are the easiest and most pleasant. Most of the time I have a batch of additional symptoms that test my determination.
I am now on day three
of zero steroids; three cheers! It
has taken me a long time to get here and it is a welcome milestone. Perhaps soon I will begin to see some
consistent symptom relief, just not yet.
With love,
Karen
