» Next week represents hump week of my seven-week cancer treatment. Next week is week #4. Three down, four to go.
Next week will be "a difficult week," where I get chemo #2 (of 3) and my final (stage 1) clinical trial .. of the genetically-engineered vaccine. More bio-hazards breakfast, baby.
I did consider blowing off #4, cuz my ass is seriously dragging. And it's the day after chemo.
But the nurse who cares for me during these trials is so good that she makes it easier. "Are you going to be here next Tuesday?" I asked.
I've never had anybody who could insert an I-V that you barely felt. We're talking iron in your vein. She has her own proprietary technique where she first warms your arm with a heating pad.
"I hardly felt that at all," I told her. "You so totally rock. I've never seen the heating-pad technique before. And I've been getting stuck a lot lately. You're up there with Anna at the lab. She rocks, too."
"I know Anna," she said. "I hate getting an I-V myself. So, anything I can do to help minimize the pain .. I'm all for that."
» The Zen-like Clinical Trials Yoga Nurse
I am not going to get much into it .. but my Clinical Trials nurse is yoga girl. A meditating yoga girl. She brings a calmness with her. A sense of peace that cancer patients appreciate. Very centered. Unflappable. (She's the one who hit me up with the Demerol two weeks ago.)
You are there for hours .. so you talk. Sure, it is a profesional environment. But, they are there to help save your life. [ Key word » life. ] So it is difficult to keep things from wandering off into personal areas.
We even talked a little religion. A little spirituality, might be a better way to say it.
We had a nice little chat about how difficult it is to actually meditate .. to stop, and quiet the mind. "Uh, first I need to vacuum the living room. Then I need to throw in a load of laundry. And now I really need to pay that stupid electric bill." You never seem to get around to sitting still and quieting the mind. She could relate. We laughed.
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"Have you ever been," I asked, "to the meditation gardens up in Encinitas?"
She had not, but was familiar with its reputation. "Lots of people said I should go."
"Afterwards," I said, "you walk across the street to Swami's smoothie shack and get a yummy berry smoothie. Treat yourself."
But when other people mention her, you can tell that everybody there respects her, and that they feel you're fortunate to have her as your nurse. I could not agree more. So, before I ever met her, I had clues that she was gonna be cool. They say it in such a way that they lead you to believe that you are in for a special treat .. and you are.
And she has a cool, unusual name. Which took me a while to learn.
Perspective from the Mid-Point » Not Doable
So, here I am .. approaching the midpoint of treatment. Dude, I will be honest with you. From what I've seen so far .. the effects of these massive doses of radition to the mouth .. it does not look doable.
» Streaks of Blood Swirling Down the Sink Drain
I mean, if there is no plateau'ing of effects .. it appears that I am going to be one miserable fuck. I mean, when I use my Waterpik (with warm salt water and baking soda) streaks of red blood pour out of my mouth and into the sink.
My mouth feels like somebody punched me in the mouth. My teeth have already told me, "If you use me to chew on food again, I will fall the fuck out. You think I'm joking? Try me."
The muscles in your throat that shuttle food away from your air tube and over to your esophagus .. get so damaged by the vicious doses of radiation that swallowing is panful and requires your complete and undivided attention. For the smallest of swallows. Cream-of-Wheat is my new favorite food.
The Weight is Falling Off » Frighteningly Fast
I am having trouble keeping the weight on. They weigh you every time at Moores .. on a super accurate scale. Last week (when I could still use the swallowing muscles in my throat) I was » 181 (.. after eating like a madman).
On Monday for the Clinical Trial I was » 177, and people noticed the drop. "I'm trying," I said.
A few days ago I stepped on the scale here at the house » 174. Today » 171. "That sucks," I muttered, stepping off. I'm hoping that this scale is not very accurate.
[ Update Dec 29 » They weighed me tody at Moores » 168. ]
It takes a long time and much concentrated effort to get food in me. No chewing. Just swallowing. Wet, slippery shit. Milk is great. Spinach. Yogurt.
I so badly am craving right now a fat, juicy, greasy, artery-clogging hot dog .. with mustard and relish and sauerkraut. Instead I can only eat » Cream-of-Wheat. Baby food.
And I have chemo scheduled for next week .. which is not known for its appetite enhancing properties. Feel me?
Feeding Tubes for All » But Not the Guantanamo Style
They tell me that everybody who goes thru this course of treatment requires a feeding tube. Dude, this is not Guantanamo-style feeding tube .. where they run a tube up your sinuses and down into your stomach. No.
Rather, this is where they admit your ass to the hospital overnight and poke a hole in your side and stick a tube directly into your belly. (I'd rather go to Guantanamo.)
"I am not crazy about the idea," I said, "of tubes sticking out of my body."
[ "Jesus has a hole in his side, I hear," one person said. "So you probably shouldnt be too terribly grossed out by the idea." ]
So I am working very hard to keep the weight on. I mean, I get up in the middle of the night just to eat. But the pounds just keep falling off .. a few more every time I step on the scale.
"At what week do patients like me," I asked, "typically require a feeding tube?" [I just finished week 3.]
"Most patients already have a feeding tube," she said, "by this point in the treatment."
She added, "I called Thornton [ hospital ] today to get things moving for you. So that when and if you need the tube, there will be no waiting. So, if they call you, and say that they're ready for you, just tell them that you're not ready for it yet."
» Narcotics for Pain (Norco Hydrocodone)
"Most patients are already on pain meds by this point," she said.
So, while I may not be doing so great .. I am doing better than most. Tho I admit that the next few weeks do not look doable. "One day at a time," my friends say. "You'll get thru this."
In this sense, the cure seems worse than the disease. I never felt this bad when I (merely) had cancer.
I never felt like somebody had punched me in the mouth. (And yes, I've been punched in the mouth .. so I know the feeling, but never this hard.) I never saw streaks of blood flowing down the drain in the bathroom sink. I never had such trouble swallowing.
Really, the chemo is no problem. Just a little nausea for few days. Even the clinical trials are no problem, relatively speaking. (Bio-hazards for breakfast.) Sure, you feel like hammered dog krap for a few hours, but then you're done. It's the radiation that really fucks you up.
These fantastic doses. They dose you with such high levels that I dont even want to know. You can feel it. They say you cant, but you can. The actul daily radiation shot lasts maybe 5 minutes. Quick .. like a punch. It takes twice tht long for them to prep you and check your alignment.
The idea is to disrupt the reproduction process of the cancer cells, which are rapidly reproducing cells. Bust up the DNA when it tries to split. Fuck it up.
You need to stay on it. Keep hitting it.
For pain, right now, I take a half of a regular strength Tylenol. They told me that Tylenol is better than Advil for cancer patients because Advil tends to drop your platelets. (Or something like that.) And chemo also drops your platelets.
The hyrocodone (Norco) comes with Tylenol. Dont think I havent been eye'ing the bottle, sitting there on my dresser. I will let you know what I think when I finally need to go junkie. (I'll probably start with a half .. like I did with the LORazepam.)
They also gave me some LORazepam, an anti-anxiety med for when you have trouble sleeping. Now, that is something that I have tried. After a bath, before bed. Nice. "Night-night, sweet prince."
Update Dec 29 » Took a half of the hydrocodone pain med that they gave me (Norco). Wow. I am so fucked up. Very floaty. White with specs of red. It keeps coming and coming. Glad I took only half. Definitely makes me sleepy.
» Beyond Exhausted, Well Beyond
I am so tired .. so exhausted. Beyond exhausted. For example, I came home on Mondy, after clinical trial #3 (bio-hazard for breakfast #3) and slept 18 straight hours (4PM to 10AM) .. waking only to remove my sweaty tee-shirts and put on dry ones.
But even those comatose 18 hours hardly put a dent in my level of exhaustion.
I was there at Moores, late in the day on Christmas eve .. getting punched in the mouth.
» Little Things Quickly Become Big Things
Speaking of Christmas eve ...
When you have cancer, and especially when you are in treatment, little things become big things. So you can imagine my frustration when I learned that my Healthcare provider mis-entered my transportation for the 24th as » the 25th. (Nothing is open on the 25th, Christmas day.)
They fixed it, but I had to be on the phone for more than an hour. Frustrating. Fatiguing. You already have so much shit to deal with .. you dont need any more.
As an afterthought, I will share this little tidbit. After I saw the Radiation Oncologist back in October .. as I was walking out .. this verse of scripture came to me (quite surprisingly) » "I will cause him to feast his eyes on my salvation." [ Psalm 91 ]
You have to check the footnote for the word » let.
I have been thinking about that lately .. about how that verse, that partial verse, came to me (so unexpectedly) at that point.
» Bio-Hazard Dreams
But first I should tell you about the dreams. Wow. Especially the night after the clinical trials #3 (with bio-hazards running thru my bloodstream) .. the night I slept 18 hours straight. I've never had dreams like that before.
Note to self » the lizard-like deep-purple iridescent left thumb with flashes of green (almost looks beaded, indestructible) .. and » throwing the guy out of the second-floor window, then hovering near the ceiling. I also had a dream about the Bug, but I dont think I'll tell that one. [ key reminder » steps on broken plate ]
Doing Good in the World » And Lots of It
But before I do that, tho, I should mention a most remarkable sentence I just read .. in an article by Steve Lopez .. of the LA Times .. (which we get delivered to the house every Sunday) .. who has written many outstanding sentences.
Here is the sentence that, coming from Lopez, who kicks much ass, made me stop & reflect » "I'm coming up on 40 years of telling stories, and in that time, I haven't come upon anyone who's done more good in the world than Boyle and Scullion."
He then goes on to tell you why. You can read the sentence and the article for yourself » here (pub 28 Dec 2014).
No Chemo » White Blood Cell Count Too Low
Update Dec 29 » Went for chemo today. They wouldnt give it to me because they said that my white blood cell count was too low » neutraphils.
I was pretty bummed to hear that. So they finished the bag of saline that the nurse had started, then yanked the I-V and sent me to the principal's office .. uh, I mean, to see the Chemo doctor (the Medical Oncologist).
She said, "No big deal. Not uncommon. We will try again next week. The chemo zaps your marrow, which produces all things related to your blood."
I said, "What can I do to help make more white blood cells?"
She said, "Nothing. It just takes time."
I like her a lot. When she walks into the room, I feel calmer. She has that thing about her. Hard to describe, but easy to sense.She also said the tumor was » "A little more than one finger." [ About the size of a marble. ]
She was working me on the feeding tube. She said (something like) » "Look at this weight loss. If this continues, there will nothing left of you by the end of treatment. I need you strong. I need you well-fed." [ 181 » 177 » 174 » 171 » 168 .. in 10 days. ]
I said, "If I need the stupid tube, I'll get the stupid tube, but let me try, first. I just got these Ensures. These I can drink."
She referred me to see the nutritionist / dietician.
She is going to try to get my Health coverge to include the Ensures on my program, because of the rapid weight loss, and because they're expensive, and because my finances suck.
The end. ■
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