Many people have asked for an update on
my condition, so here goes. Today is Thursday, February 15th,
my last chemotherapy was Tuesday, February 6th.
I get chemotherapy every 21 days. That
period can roughly be divided in half, the first 10 days is dealing
with the effects of the chemotherapy drug: the nausea, the fatigue,
etc. The nausea and fatigue fade away after a week to 10 days and I
have another 10 days where I feel pretty good. During the first
week, I am not much interested in being actively engaged, let me sit
on the couch and read a book, or go to the crawlspace to sort through
old junk while listening to music; its really a lot of sitting time.
The second 10 days are much better, I get some energy and Carol and I
can get out of the house and do something or on those days we are
home I do chores or work on a project.
I have a chronic cough. I am
functioning with one lung, the other has collapsed.
I am still limited in my energy level.
This has been the most difficult thing for me to accept, I was an
active person, an athlete, a gardener, I could pick up a shovel and
dig in the dirt all day long. Now I am happy to carry a 2x4 for 50
feet, then rest. I arrange to have a chair placed close to my
effort, so I can rest every 10 minutes or so. I am a project guy so
it really sucks. Carol keeps reminding me that it is the new normal.
Since the middle of November I have had
chronic shoulder pain, at times inducing nausea and vomiting. At
first we thought it might be related to minor surgery to install a
power port (a permanently installed IV), the pain started two days
after the surgery. I treated it with ice at first, then heat, then
massage, then exercise and nothing would relieve the pain. I tried
opioids, and that wasn't satisfactory, I didn't like the way I felt.
Finally, last week I went to an acupuncturist for treatment, she said
the vagus nerve goes through that spot in the shoulder and was likely
irritated because of a sensitive stomach, the chemotherapy agent I am
receiving attacks the stomach and other parts of the alimentary
canal - that all seems pretty logical. There is no significant change in the shoulder pain since the
acupuncture treatment but I am hoping that the farther I get away
from the last chemotherapy treatment, perhaps the inflammation will
subside a bit and the cycle will be broken. I have my fingers
crossed.
Prior to Christmas I had been to the
emergency room on a couple of occasions for nausea/vomiting that was
uncontrollable. Our daughter Amy, a medical student, thought I was
getting psychotic, did some research and discovered that I have a
super power, I can reverse the effects of a popular anti-nausea drug.
It happens rarely, but often enough to be documented where-in some
people can reverse the effects of the drug I was prescribed, an
allergic reaction. Amy went with me to see my chemotherapy physician
and helped me present the case. He made changes in my anti-nausea
drugs and I am feeling much better. One of the new drugs I am taking
affects my balance, and Carol, right away said, “no driving for you
while you are taking that drug”, which I take during the first week
after chemo.
The threat of the flu and my
compromised immune system have kept us at home a lot. When we go out
Carol is constantly looking for sick people, she has masks in her
purse and sanitizing liquid. On several occasions we have packed up
and left – no taking chances.
My lungs have difficulty dealing with
temperatures less than about 45 F, and this winter has been a chilly
one. We had a nice day yesterday, sunshine and warmer temperatures –
I taught Carol how to plow our parking space with the Kubota tractor
– her first time plowing snow – she did a great job. I grabbed
the snow shovel and moved a little snow (about 5 minutes worth before
I ran out of energy)... it was nice getting outside for a short
spell. We are looking forward to the warmer temperatures as spring
descends upon us.
We get up most mornings, start a fire
in the fireplace, sit down and have a cup of coffee, we visit about
our kids and our relationship and the comedy side show taking place in our Capitol. There is plenty of laughter.
I almost forgot, we have a new resident
at our house, an orange tabby, about two years old, from a shelter in
Fargo, a Christmas present from Kristen and Gabe. He is a snuggly
guy and spends hours on my lap.
We try to get out a couple of times a
week, close to home the first 10 days after chemo, and farther from
home during the 10 days before the next chemo. We had a warm day a
couple of weeks ago and drove to Spearfish, at the north end of the
Black Hills, met friends for lunch, I went downhill skiing, 5 times
down the beginner's slope, it wasn't much but it felt great to get
some exercise and fresh air. As the weather gets better we will
venture further away. Still on our agenda are drug trials, still
hoping for a cure!
Our neighbors have been wonderful. We
got home from Fargo a week ago, the day before my last chemo, it
snowed while we were gone, and the neighbors moved the snow. It
snowed again last week, it was my down week and the neighbors were
again moving snow. We have such wonderful friends and they are
taking such good care of us.
Carol is a great caregiver. I asked
her how she is doing and she said she is doing OK, a little bored but
happy that we live in such a lovely place. She likes travel, so she
is looking forward to some nicer weather when we can move around more
easily.
I want to thank all of you for keeping
us in your hearts. We are truly blessed to have such great friends.
Love to all,
Van
