I know. I
haven't posted in a week. I've fallen a little behind. The side effects have
gotten more intense, ugly and sometimes, unfortunately, messy.
I'm still
walking to and from the hospital each day. Thankfully, I invested in a nice
warm coat last winter. I do not like absolutely hate the cold and my Moose Knuckles
(Stirling Parka) is doing a great job keeping me toasty on my long walks.
As far as
side effects ... well let's just say things have deteriorated. The radiation
burns have gotten a lot worse. In some cases the red burnt skin has broken and
is peeling or flaking.
There are
some skin discolorations, brown spots the size of a Canadian loonie (one dollar coin). These skin
changes may or may not be permanent.
The pubic
hair to the left and right above my genitals has fallen out, leaving a strip of
hair down the middle. I was describing this to my mother-in-law and she said I
had a “mohawk” … she always sees the positive. I on the other hand see bald
spots.
I felt
un-human. I lost the ability to control my own bodily functions. Urgent bowel
movements. Urgent needs to urinate. Rightly, or wrongly, I associate these control
problems with the beginning of life and the end of life. Infants and the
elderly.
I was getting scared to leave the house and I didn’t know how I was going to make it to my appointments. My super-duper-warm Moose Knuckles coat became a burden … I would never be able to get out of it fast enough if I had a sudden need to use a toilet.
I was getting scared to leave the house and I didn’t know how I was going to make it to my appointments. My super-duper-warm Moose Knuckles coat became a burden … I would never be able to get out of it fast enough if I had a sudden need to use a toilet.
So I broke
down. I take a lot of meds to manage my
HIV and I am reluctant to take anything that I don’t need. I’ll suffer a
headache instead of taking Tylenol and I only take Imodium when travelling –
even then I tough it out at first.
I’m no
longer toughing this out. I take Imodium as a prophylaxis every morning now.
I had my
weekly appointment with the radiation oncologist on Wednesday and he prescribed
Flamazine,
a topical anti-bacterial cream for the burns (a great product name for a cream
used on burns) to use before I apply the barrier cream and Tylenol 3 to manage
the pain. I wondered why it wasn't prescribed earlier and my guess is that if
they prescribe it too early then they have nothing to prescribe when it the
side effects get worse.
My
radiation oncologist said that all of side effects are, as he would expect
after three weeks of radiation. Nothing unusual.
My
radiation oncologist also said that head and neck cancer patients have the
worst experiences during treatment … and anal cancer patients come in at a
close second and I am handling it very well.
I also had
my blood work done earlier this week in preparation for the second cycle of
chemotherapy next week. They need to check the neutrophils,
white blood cells that are an essential part of the immune system, to make sure
my body is healthy enough to tolerate the chemo. If the neutrophils are too
low, there is a risk of neutropenia and a decreased ability to fight infections
such as bacteria, fungus and yeast. My neutrophil counts are below what is
normal for a healthy person, which is expected at this point in my treatment,
but they are strong enough to proceed with the chemotherapy on Monday.
Next week
will probably be the worst.
The
radiation side effects are cumulative, but I now have some lotions, potions and
pills to deal with most of the side effects. The addition of the chemo will
have its own issues but I tolerated the chemo quite well during the first week
and there shouldn’t be much difference the second time. The only thing that may change is the fatigue
… I may be more tired this time around since my body has already been through
four weeks of treatment.
Thankfully,
I have all my Christmas shopping done.
References
Moose Knuckles
(Stirling Parka)
Moose Knuckles Canada
Flamazine
MedBroadcast
Neutropenia
Cancer.net
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