» I have had many rough weeks over the years, but this was up there with the hall-of-famers. I came home on Friday, feeling shakey-tired, and went straight to bed. Slept 'til noon today. Only then was I rested enough to be just normal-tired.
Depending on the schedule of the day, I sometimes have to get up before 5 to get ready and make a bite of breakfast for the day ..
.. and dont get home 'til late. Long days. Five days a week. Sometimes I get up before 4.
Much to share. Not sure where to start. Probably should mention first that the tumor (swollen lymph node) is almost completely gone, already.
The doctor (Radiation Oncologist) said that is rare and encouraging.
Okay, "almost gone" may be a bit optimistic. But I would estimate that it has shrunk ("melted") to the size of a marble .. from the size of a date.
» Visit Original ENT Surgeon
I also saw my original ENT-surgeon this week (Thursday). He was the one who referred me to Moores. He says that the fact that I tested positive for HPV-16 is actually a GOOD thing ..
.. because those types of tumors / cancers respond better to radiation / chemo than those caused by smoking / drinking. (I have never been much of a smoker or a drinker.)
I told him that the Radiation Oncologist was thinking of getting the surgeon to cut out the node and skip radiation / chemo.
He said, "I know. I told him that I didnt think that was a good idea."
"Why not?" I asked.
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He said (something like) » "Because then you're continuing to dump cancer into your body from an unknown primary. And this is not something you want to leave to chance."
"Well," I said, "I was pretty disappointed that it wasnt going to be over in a snip."
"It's not just a snip," he said. "It can leave you with all kinds of problems down the road."
» Nausea Mostly Gone | Hiccups Completely Gone
The nausea is close to gone. My stomach starts to feel queasy when there is nothing in it, so sometimes I wake just to eat and then go back to bed. The hiccups are totally gone.
My appetite doesnt seem so great, but once I actually start eating, I realize how hungry I am.
I want to describe for you the process of the radiation, the machine, but not now. Later.
But I still remember the Chemo doctor saying » "The chemo doesnt kill the cancer. It only makes it more sensitive to radiation. Then we use the radiation to burn that bitch out."
No, she didnt say 'bitch'. But that's what she meant.
But they basically cook your mouth with radiation. They have this numbing mouthwash called "Magic Mouthwash" (prescription) .. but my coverage doesnt cover it and it is more expensive than I can afford right now. So it looks like I might have to tough this out the painful way.
» The Walking Bio-Hazard
Let me tell you, perhaps, about my experience with immunotherpy (last Wednesday) ..
.. where a girl delivers to my room a large white styrofoam box about the size of a microwave oven ..
.. labeled in large orange letters » Bio-Hazard, with that gnarly symbol that looks like a reddish-orange spider.
I shit you not. (This is the genetically-engineered smallpox virus .. the first of four treatments.)
The nurse dons a plastic apron, a face shield, rubber gloves and a face-mask .. just to hook it up to the pump that will pump it » into my vein.
When I pee in the bottle for them, the plastic cup is also labeled » Bio-Hazard with the orange spider. Very weird. After I come out of the bathroom, they put up a sign on the door » "Do Not Use" .. until a guy dressed in a Haz-Mat suit goes in and disinfects with industrial-strength chemicals.
[ Yes, I'm exaggerating .. but not nearly as much as you might think. ]
It was 17-ml's .. pumped in over a 10-minute period. They gave me my own separate room for this .. with a big, fancy hospital-type bed. They kept me for six hours to watch me and make sure that I had no strange reaction. I mostly slept.
That night, after I had gotten home, I woke about 3AM feeling chilled, as the doctor said I might .. but not bad enough to require any meds. I just put on some sweats and went back to bed.
They have been taking lots of blood. Four vials yesterday and also the day before. Pretty much every day, it seems. Tho I have this great girl at the lab who is so good that I hardly feel it at all. Makes a big difference. I almost consider her my girlfriend, if you feel me. (Someone who helps make your pain less painful.)
Speaking of blood samples, they were very happy that my liver functions looked so good, because that implies that the cancer has not spread to my liver. (If it spreads to your liver, you're fucked.)
If this shit spreads, two of the most common places are » lungs and liver. They have already looked at my lungs very closely with two CT-scans and a PET-scan. All say that my lungs look good.
They also take a look at my lungs every day during radiation .. when they use a light-energy x-ray to make sure that I am lined-up corretly on the machine before they shoot me.
So my lungs look good .. but since mom died of lung cancer after not having smoked for more than 20 years .. I am naturally conscious of that. (And I told them so.)
» First Meeting With Psychologist
I also saw the psychologist yesterday. She was good. You could tell. A highly-trained, sympathetic ear. Very nice.
That was good for me. I will share more on that later, too. It rained hard here on Friday.
I found it interesting when she said (something like) » "Most cancer patients dont allow themselves to feel the emotions they are experiencing during treatment. It usually isnt until AFTER treatment is over that they start showing up for therapy. So just by being here, you are ahead of the curve."
Speaking of emotional support, I told this psychologist about my cousin Patty (.. because my emotional support was one of the things that she asked about).
» Outstanding Emotional Support
My cousin Patty continues to be an amazing emotional support.
I could write volumes about her wide-ranging emotional support, but will simply mention that I shudder to think where I would be without her ever-present empathy & compassion.
I mean, it is like you can actually feel her walking along-side you. All the time. Truly remarkable. Something of a lifesaver. Emotionally speaking.
So you shouldnt be surprised to learn that I find myself calling her often.
Cancer, I realize, can be a difficult thing for people to deal with. I'm talking about your family and friends.
Most people would just prefer not to look on ugly, threatening things. Easier to simply avert the gaze to more pleasant things. This is a natural human reaction. Only the strong can look on life's ugliness with a steady, compassionate gaze.
This is why most Japanese citizens know little to nothing of how their government treated American POW's during WWII. They choose to look away. [ Americans are no different. ]
So when you find someone who is not afraid to jump into your dark-night-of-the-soul with you .. you appreciate that. Very much.
» You are More Full-of-Life Than Anyone I Know
I also want to mention a nice message that I received on my cell from a friend who has since moved to St. Louis (.. only a few miles from where the unarmed teenager, Michael Brown, was shot in the head at point-blank range for jay-walking).
She left a message that said (something like) » "You are more full-of-life than anyone I know."
Never thought I'd hear anybody say anything like that while I was being treated for cancer (squamous-cell carcinoma). It definitely made me think.
( This was, btw, the same girl who said » "I could never do that." )
To be continued. (I am washing all the clothes I was wearing during chemo. They stink. Sheets, too. Nice to have clean sheets.)
The end. ■
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