(12-13-14) » 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.
First Week of Radiation / Chemo
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.
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 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. Very weird. After I come out of the bathroom, they go in there with chlorox and disinfect like crazy.
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 reacton. 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.)
I also saw the psychologist yestersay. 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).
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.
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.
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.
I am getting good at these CT scans .. which require you leave the I-V in your arm for the duration of the test. After the scan was complete, the Clinical Trials girl brought over a bag full of vials for me to fill.
Vials of all different colors. Green, purple .. a veritable rainbow of colors. Pretty colors.
» Happy Thanksgiving. Gobble, gobble. I went to Moores again yesterday. Normally I write about my experience ON THE DAY of the trip. Which is more difficult. More challenging.
Thanksgiving & Genuine Feelings of Gratitude
I feel this approach takes the reader closer to the experience itself. Because I myself am closer to the experience.
But waiting until today, being Thanksgiving, gives me the opportunity to share some observations about gratitude that I find interesting.
Plus it gives me 24 hours to reflect on the experience. Because there was a lot of information to absorb in a short time.
Yesterday was sort of an orientation or indoctrination for folks who are scheduled to receive radiation treatments.
A 1-hour class given by the lady WHO RUNS Moores. That would be » the Director. (With a capital 'D'.) She could easily have pawned this off on someone else .. being the busy person that she obviously is. But it speaks volumes (to a patient like me, anyway) when the head honcho herself welcomes you to her facility.
» "This is what we do here at Moores. Let me show you a little of what I mean .. because I realize it would be easy to overwhelm you with information at this point. But I want to give you a quick, general idea of the quality of care you can expect to receive while you are HERE WITH US at Moores. I think it will bring you a degree of comfort when you realize that .. nobody does cancer quite like we do. Ah! There I go again, bragging on my people. Shame on me. But it's hard not to brag on them. Let me briefly show you what I mean by that. Let me introduce my team to you. And if while I am introducing them to you and while I am outlining their (most remarkable) skill sets for you .. if you somehow get the impression that I am insanely proud of them .. well, uh .. that's because you're right. I am. Guilty as charged. But hear me out. There are reasons for this pride of mine. Many reasons, and all valid ones, too. For example ..."
Dude, these machines are SO TECHNO COOL that .. even with cancer I had a boner.
There is a part of me that does not identify with the cancer .. and part of the way in which I deal with it (with the cancer, I mean) .. is to identify and recognize any and every POSITIVE thing that I can find. (And yes, there are many .. if you look. Tho yes, it can be difficult, at times, to look beyond the cancer. Sure. This I will not deny.)
» Imagine taking a serious virus such as » smallpox and genetically engineering it so that it cannot attach itself (attenuated) to healthy cells, but rather so that it can only attach itself to specific types of cells, such as particular types of » cancer cells.
Genetically Engineered Smallpox Virus
When the genetically-modfied smallpox virus enters the cancer cells, it replicates so fast that the cancer cells basically explode from the inside.
Think about that for a minute. Think about the level of skill and knowledge and technology required to craft such a thing. What a fascinating concept.
This is called » immunotherapy. Immunotherapy represents the future of oncology.
Smallpox has been around since 10,000 BC. The earliest physical evidence of it is probably the pustular rash on the mummified body of Pharaoh Ramses V of Egypt.
Viruses are basically » snippets of genetic code. (DNA, for example, is genetic code.)
This is part of a clinical trial that I am eligible for .. with a genetically engineered virus that has been tested for 2½ years .. on 22 others. I will be #23.
Later, I asked her » "Am I really number 23? Or did you just say that to try to get me to sign up?"
"No," she said, "You're really number 23."
[ The 34-page prospectus that she gave me says that they are looking for between 18 and 32 test subjects. The Clinical Trials girl said that they are going to quit at #24 and move onto something else. So one more after me.
I did not read the whole thing because it kinda freaks me out to read stuff like this. They have about 30 people working in clinical trials. The Radiation Oncologist is in charge of the trial. ]
I went to Moores again today. For a 'simulation scan'. This is where they drape a warm, wet mesh netting over your face and let it harden. Yes, it's a very different experience.
Simulation Scan | More Laughs | The Date
And this face-mask clips to the board that you're laying on. So it pulls taut across your face. So you dont move. When they shoot your head with radiation. Feel me?
It is not a death-mask, no. But I would be lying if I said the thought never passed thru my mind.
Like I said, I find myself employing humor when I am feeling stressed. And ..
.. these people (a girl and her guy-helper) they are super meticulous about setting up this thing on your face, and also for the pillow (mold) that they are also making for you.
After a while of them making endless tiny adjustments, I said » "You guys are so meticulous. If it were me, I'd just throw a burlap sack over their face and spray it with a little Elmer's glue. Budget cuts. You know."
I had them laughing.
"So stop your whining, you big baby. We'll hose you off after we're done. Dont worry .. Elmer's is not toxic. But try not to swallow any of it when it drips thru the burlap. Oh, it looks like the hot water is out again, so we'll have to hose you off with cold water. What do you mean there's a piece of potato on your face. Where do you think I got that burlap bag from? And you're lucky that you're getting burlap .. you shoulda seen what we did to the last guy who was here. You should be glad I like potatoes."
Once I get into a groove on a theme, there's no stopping me. I almost killed a man once .. by making him laugh so hard .. that he couldnt breathe. He was begging for mercy.
No, I did not say all of that to them .. but that is the direction I was headed.
And yes, he did indeed want to » verify the pathology.
Dude, let me tell you what "verify the pathology" means. It means that they are going to re-biopsy the tumor (swollen lymph node in your neck) ..
.. by sticking needles into it (repeatedly) and sucking out the juicy-juice that you are growing in there. No, they do not call it 'juice' .. but you catch my drift. Your own special sauce. Home grown carcinoma.
So I am warning you .. that I am feeling a little spaced out. Not as bad as after the chunks-of-flesh biopsy, no .. but I can definitely feel myself nicely whacked.
» I went to the Moores Cancer Center today. In La Jolla ( luh 'HOY-uh ). I have actually driven by that road many times .. but never gave the name of the street much thought » Health Sciences Drive ..
The Moores Cancer Center in La Jolla
.. because I never had any reason to turn down that particular street.
Until now. Feel me? "So this is what's down here."
.. to catch an outdoor jazz concert while sitting beside the lovely marina there at Shelter Island.
I actually took the Bug's mom to a jazz concert there at Humphreys ..
.. when he was still in her belly. I forget who we saw (because I have seen so many acts there over the years) but I remember having a great time. Hot summer night.
She said he was jumping around inside her belly with the music. Later we moved back to where the music wasnt so loud and he stopped kicking. So the Bug has been to Humphreys .. even tho he doesnt know it.
But I am avoiding my subject. My uncomfortable subject.
I dont know where to start .. perhaps because I am a little overwhelmed. Which is understandable, I guess .. considering.
I mean, the voice is my head is saying » "Dude, you're going to the Moores Cancer center. A little difficult to ignore that fact .. wouldnt you say? If you forget you can always ask the driver where he is taking you.
Did you notice the word 'cancer' in their name? How can you not? Cancer .. that's what they DO there at Moores. In fact, that is ALL they do. No, they dont make hamburgers. And the REASON that you are going there is because » cancer is what you have.
Just like your mom had. And her father, your grandfather. You know how that turned out. Not pretty. Scary-ugly. And you have the same genes. You look a lot like your mom, if you ask me."