» I was going to title today's entry » Moving Back the Oncolytic Goal Posts .. for reasons that will become clear. But that would have been the whiny title, the sniveler's title. The pussy title. And nobody appreciates a whiny, sniveling pussy .. especially when it's a guy.
Killing the Incurable
Instead, today's title is .. well, you see it there .. which I will use as a springboard to discuss these oncologists » The Cancer Killers.
My VOICE .. it has been a problem, off-n-on, for a week or so. The last time I saw the radiation oncologist, he said » "If your voice doesnt improve by the next time I see you, I am going to look at it."
Already, I can barely talk. When I do it hurts. My gums are bleeding and look downright scary (swollen & turning pale white).
My nose is bleeding, so that I need to wad up pieces of tissue paper and stick them in my nostril so that I dont drip blood everywhere.
And those arent even the worst parts. Dont even get me started on my tongue. Or my throat. This is why I say that this does not look doable.
Four weeks looks doable. Maybe five. But seven? I'm not seeing how you do that. Other than eating tons of narcotic pain meds all the time.
When the Chemo doctor [ Medical Oncologist ] saw me this past week, after feeling the size of the tumor, she looked in my mouth with a light and said » "Well, you definitely have mouth sores." [ just like she said I would ]
In this sense my hump is not really a hump, but rather merely represents the halfway point up a gnarly, steep hill .. the hump being up there at the top of the hill. Cuz you will still feel like shit well after 'treatment' concludes.
I can see that a primary concern for the Oncologist is giving the patient enough information so that (s)he has a good idea of what to expect, but not so much that you freak them the fuck out .. which would not be difficult.
I dont want to gross you out. [ Tho certainly, I'm sure that I easily could. You do not want to hear, for example, my emergency procedures to help alleviate the mother of all constipations .. caused by the narcotic pain meds. ] So let me tout some positives instead, and perhaps even inject some Rad humor .. for purposes of stress relief.
» Next week represents hump week of my seven-week cancer treatment. Next week is week #4. Three down, four to go.
Treatment Feels Worse Than the Disease
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.
» [ The winter solstice arrives on Sunday the 21st at 3:03 PM Pacific Standard time. ] So many stories to share .. so many cool, gnarly, head-spinning stories. But so little time to share them. What a shame.
Bio-Hazards for Breakfast
I am spending lots of time down at Moores .. meeting with this doctor and that ..
.. getting bio-hazards pumped into my veins. You know.
Had my second clinical trial this week. They said that they expected me to have a 'strong reaction'.
Dude, let it never be said that the people at Moores sugar-coat. No, sir. They let you know the shit is coming. You can batten down the hatches if you like, but you will never say, "They didnt warn me."
So there I was .. reclining on the bed in my private room (which I call a 'cabana').
And they pump the bio-hazard into my veins. (The pretty nurse who does this is wearing a dang haz-mat suit.)
And I am thinking how I am such a tough dude that I eat bio-hazards for breakfast.
And my nurse (pretty with a great smile) says » "You might start to feel cold and feel like you cant get warm and start shaking, even violently .. now that your body knows to respond to this vaccine."
And I am thinking » "No doubt, this girl is impressed with me that I am such a tough guy that I eat bio-hazards for breakfast and do chemo for lunch."
She says » "It's important that you press this red button here at the first signs of this because I will need to come and shoot this demerol into your ass [ the I-V line ] so you stop shaking."
It only takes her 10 mins to pump the bio-hazard into your vein, but they keep you there for several hours .. to watch you.
My hottie nurse stops by every once in a while to check on me, and I am like » "Is that all you got? Dont you have anything stronger? Maybe you have some plutonium popsicles for me to suck on? That might get me going."
The Malfunctioning Air Conditioner
Then, after a couple of hours, all of a sudden, I am like » "Dang .. something must be wrong with this air-conditioner. That sucker must be broken. Somebody needs to call maintenance. Cuz it is getting colder-than-shit in here."
(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.
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."