Below are the compiled entries to Face book while dealing with my latest cancer. They were written up until I only had energy to stay alive and not much to spare beyond that.
I heard it said the other day "it's not real until it's on facebook". Well here it is, I have cancer in my throat. A tumor that will have me at the Dr.'s office more than I care to. Going this morning for my first meeting with the radio-oncologist (death ray). Medical oncologist (poisoner) next week. 6_8 weeks of less than quality summertime break. There has been no talk of mortality rates, but a certainty of life changing treatments. Gods will be done.
Just so ya'll
know, went to the hospital for a biopsy of a tumor in my throat, all went well
, results next week. It will be tough for a while, more to follow.
I try
not to use buzz words and trite phrases, but sometimes they just fit. Emotional
roller coaster would be one of those. After an exam that exposed a tumor in my
throat (down), MRI to confirm tumor(wait a week for results, down) and a biopsy that
confirmed squamous cell cancer (wait a week for results, kind of up, could be
worse), wait a days for PET scan to see if I have one or more infestations, (try that one on for
size and keep a chipper outlook, down) it came back clear (Thank you God, up),
visit with the poisoner (medical oncologist) who tells me the week after my
last radiation treatment will be the worst of my life(down, not too
encouraging). Visit the dentist who recommends removing all my lower teeth now,
because after the treatments healing from surgery will just not happen(down).
Add in a weight loss program that involves me being too sick to keep food down,
or my throat too sore to swallow, for weeks. Well... this will certainly be an
interesting summer. The financial outlook is a real kick in the whatever. If
you have had a worse month, and I know someone surely has, you have my sympathy
and prayers.
Going this
morning for surgery to remove six (yes, only six!) teeth prior to radiation
treatments. The visit yesterday to the oral surgeon provided a much needed
relief from the gloom and doom predicted by the other shamans involved in this
dissection. Things may not be as devastating as previously related by poisoners
and death-ray wielding practitioners.
Home
conscious, I think. The inside of my mouth feels and tastes like the entire
Arabian camel corp spent the night in side and everyone got up and took a piss
before they left. I have a new nickname with the nurses in the Dentist’s
office, I was unconscious, and feel vaguely uncomfortable that I may have made
a bit of a goose of myself. Nothing new there.
I am
starting on a program that is going to be a little unpleasant for my wife and
myself. I am going to be treated to some fairly brutal medical treatments that
will leave me rather sick and tired, as well as some discomfort. I am a lot
like an animal in the respect that when in pain, I will either try to hurt
someone or go to sleep. I plan on sleeping a lot. Pursuant to that, I would
suggest that anyone who feels the need to advise either of
us as to “what we should do” or “if it was me I would have to/I just couldn’t
do” something, save all of us some trouble, and keep it to yourself. This may
come as a surprise, but, we talk to each other. We are full grown, and we have
this to deal with, not some third party. We are both cancer survivors. Ginny is getting flack because I am insisting she continue her
studies. Why she has consented to do this is no one’s business, but considering
this is directed towards do nothing busy bodies, I will explain. If she does
not follow through now, it will cause the loss of tens of thousands of dollars
spent on tuition and books, at best it may result in a delay of a year or more
in her graduation.
To watch me sleep for an extra two days a week.
Oh! Please!
This is what I asked her to do, don’t let me become a stumbling block to
reaching her dream, don’t make me the anchor that drags her down. If you have
another opinion that you just have to share for “our own good”, bring it, if
you have the guts, which I doubt. You’ve been warned. I’ll be off the leash and
on the grounds.
Who knows, we may make the national news.
First run on
Chemo, VERY boring! Multiple bags of meds and saline flushes in the lines, two
hours for the Cisplatin, and hour of blood draws and lab work. Total of 5 1/2
hours. Radiation therapy, an hour including the wait. Mondays are a big scratch
on the schedule now. Currently no ill effects, don't expect that to last. Met a
really nice young lady who has been fighting it off for 2 1/2 years, hope I'm
as tough as her, probably not.
The treatment
centers weigh me every day to ensure I don't lose too much weight, not to worry
the wife is on the job, I've GAINED 33 lbs since June! When this is over we are
going healthy!
Just back
from the shamans hut, one of them almost got a lesson in being timely if not
prompt, I was walking out of the exam room as he opened the door. I told him I
only had a moment because I was almost late for my next appointment. I started
the day off with no nausea or soreness. That sounds like the tumor is reducing
and the side effects of the chemo could be mild, notice I said could be, not
predicting, just hoping. The soreness and lesions in my mouth from radiation
burns could start next week, however with the trial program, that may be
reduced. Time will tell. Crystallized Ginger, good for sickness and if you have
a nasty metallic taste in your mouth or throat it will clean it right away.
If anyone has
failed to notice I'm of Irish lineage. I sometimes think of it as a part of my
makeup that I enjoy a nip or two or.... moving right along, of some dark
liquor. Except that right now with chemo in my system turning my taste buds to
the dark side, I can't even drink a lite beer with lime, too nasty for words. I
don't expect this to last forever, at least I hope not. Of all the things to
lose, wouldn't that be a trip, why couldn't it be something like.... Brussel
Sprouts OR Brockley ?
Just found out my employer has stopped my pay,
without telling me, because I'm sick. I guess they figured I would notice when
it didn't show up in my account. FMLA paperwork came yesterday to my old
address. Timing is everything.
Some
people might not have picked up on the idea that I have cancer again. Unrelated
to the previous instance. I have posted about it some and have talked to
various and sundry about the situation. I have thought about this and decided
to be open, conversational, and plain about what I'm going through. I am trying
to avoid being whiny, though I may get there later. Cancer is something that
touches ALL of us one way or
another, virtually every day. With all that in mind I feel it should be a part
of our conversation, not pushed into a dark corner and avoided because it's
"just too depressing", avoidance will not make it go away, and
support is what sufferers need. This is a personal opinion and if it causes you
stress, forgive me. One of the things I have learned of late is, if your type
of cancer isn't shared by a media figure, finding information or support is
very difficult. I want to be the guy folks talk to and get info and support.
Continuing the conversation... It's easy to
understand how people lose weight in therapy, nothing has any taste and it
hurts to swallow. No motivation to eat. Hunger may drive it, but that's a little
late in the game. If I get hungry then I feel a little sickish. So I try to
avoid that point. This morning the bride fixed me pancakes with lots of butter
and real 100% maple syrup from Firefalls, NY. I know that's what it was,
because that's what it looked like. Blindfold me and I'd be guessing.
Continuing
the conversation... I had a very good conversation this afternoon with another
survivor, she had a case of lymphoma treated by chemo. The loss of taste,
fatigue and some of the other more visible side effects were part of her life
for a while. She has completely recovered and is cancer free. The picture in my
mind is something like a rock climber. You are hanging on to little things, bits that keep you from falling, and as you look
around you see another little place a little higher or a little more secure
that will let you progress. Actual testimony from people who have been there is
great. The other interesting thing that came out this afternoon was from my
bride, also a survivor, the idea that people don't talk to sufferers because
they don't want to upset them. People, they are already upset, people think
they are "broken" or fragile. Get over it. We are a bunch of tough
old birds, that just put their mind and will to what they have to do and go for
it. I see them five days a week, and a more positive group would be hard to
find! They have a problem, but help is there, and they are looking through to
the other side. Some folks might get all weepy and snively, but I'm going to
guess they are that way when they are well.
Long
day in the shamans hut, four sticks to get poisoned, the death ray was down for
calibration (something I encourage for obvious reasons), everyone was slow
starting. All told seven hours before I got home. This weekend I had a really
severe sore throat, that is now a mild sore throat, from radiation treatments.
I am not understanding why it got better. Tomorrow I expect to wake with the
bad part again, we'll see.
Tomorrow will be 34% complete. As of this moment I am thanking the good Lord in
heaven, that he is keeping the bad juju away for now. I am continuing to be
amazed by the upbeat attitude of the folks who are sitting in a room hooked up
to multiple IV pumps, smiling and joking, sharing stories and snacks, not to
mention being just regular folks. A small unpleasant surprise, the number of
people I know who are in for treatment or follow up, I hate that for them.
A quick trip
to the death ray today, less than twenty minutes in the building, it also
included a quick read of my treatment plan to see the areas and dose levels. I
am getting a goodly area covered that includes some containing lymph nodes,
"just in case". That's cool because I really don't want to do this
again. Yesterday at the poisoners, I initially sat down beside a dude who was
asleep, I had to get up and move. I have never heard the like of noises coming
out of that guy. Moans, groans, wet sounds reminiscent of agonal breaths, I am
so glad he moved around some, I was afraid he was dying. I have actually heard
a a few folks pass over that were much quieter than him. Most disturbing.
Seems as if
I'm going to get a "new look", beard is coming out quite easily. I
wish all of you could have seen the look on my face when I tugged on the bottom
and a fair collection came out in my hand. It'll grow back,,,eventually, but
only 3000rem and its falling out. 3 weeks of seven complete.
Very poor day
yesterday, six sticks for a working IV, I almost came unglued at a nurse who,
to her credit and good sense, took the advice to "back off". Note to
world: I really don't care what you can't do, I can't work with that. Tell me
what you can do and we are on the way to success.
Feeling some better today, though I'm sure the
angels at the death ray office will fix that. I am using more pain and anti
nausea meds, which helped me sleep 11.5 hrs last night. I'll spare everyone the
scatological details, however the radiation effects to the interior tissues of
my mouth are becoming pronounced. Ick x yuck. I'm almost down to living off
nutritional shakes, and they're not too pleasant either.
Day 22 of 35. Changed over to pain patches for 24hr coverage,
much better. Found out I have Thrush inflammation in my throat, treatment under
way. Going to produce a trifold thing for the next folks at the death ray shop.
There were a lot of things I learned the hard way that could save some pain.
And will suggest some things to the poisoners for the same reason. Folks if you
have never been there, you can't possibly know what it's like. Keeping a
coherent thought, much less a positive mental attitude is a major battle. I
could be quite graphic and get defriended by both of you, but I'll spare you,
and me. I mentioned the bride helped me pack on 22lbs of pudge prior to the
start of this dance, well that's gone. I haven't had solid food in three weeks,
suckometer needle swings wildly, and just so you know I have had so much
"Boost" if anyone offers me chocolate milk after this is over, I'm
probably going to punch them in the head. Oh by the way those skin tag things,
I found that as a side effect of the treatment, they just turn to granules and
brush right away. 5000R will do that for you, not recommending that.
The break in posting came when I could no longer drink water or swallow much of anything. A Boost shake would take me an hour, anything else was out of the question. I lived on a thousand calories a day and lost 42 lbs in six weeks. The lack of energy kept me cold, I would ask my bride to cuddle with me to try to get warm. Some of the worse days were due to dehydration, that resulted in lowered blood pressure and up to eight sticks to get a working IV line.
I had days where everything revolved around trying to get food down. Get up early and try to not be sick, take an anti nausea pill and wait forty minets, take a pain pill, wait forty minets, try to eat. Throw up one or more pills and start over. Be so violently ill your lips constantly peel from your stomach acids. My red cell count was so low I couldn't walk anywhere, I would get tired and have to sit. The love of my life wanted me to use the electric cart at the grocery, but I am too hard headed.
All else being equal I am over the hard part, I get regular checkups and live all I can. I figure that cancer will one day kill me, it's just a matter of time, no matter how tough, smart or careful you are the odds catch up.