Monday, March 25, 2013

Long hard summer...

 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. 

1 comment:

Larry said...

f**king cancer...I hate cancer...