» Saw my radiation oncologist today .. to review the results of Friday's [ "most-important-test-of-your-life" ] PET scan. "How are you feeling?" he asked. "You tell me," I said. "What should I be feeling? What's the PET scan say?"
The Rad Butterfly Emerges from Treatment Cancer-Free
First thing I did when I got out of there was to call my son .. cuz I wanted him to know that .. just because I havent seen very much of him lately ..
.. doesnt mean that he's not important to me.
"I wanted to call you first, Pun'kin, and let you know. Tell mom for me. Now I'm gonna call everybody else .. and tell them the good news."
But before leaving the exam room, I told my oncologist that it was difficult for me to adequately express my gratitude [ uh, cuz so much is involved. i mean, what do you say to a man who saves your life? ] but that I didnt wanna let that stop me from saying that I do indeed appreciate him and the entire Moores organization.
Dude, I *do* appreciate them. Very much so. You cannot imagine.
I mean, you walk into their life with cancer .. and walk out withOUT it.
That is a very cool skill set .. I dont care who you are. They are literally saving lives.
"Come back and see me in 4 months," he said, shaking my hand. "We'll do another scope exam."
Tho of part of me is now very tired. You cannot relax very well you are are fighting cancer and dealing with the effects of the (brutal) treatment regimen. That part of me feels like it could sleep for two weeks.
It was cool today, cuz, when I walked into the lobby of Moores, and this is BEFORE I saw my oncologist, before I knew what the results were .. and only steps from where my driver had dropped me off ..
.. I saw a big display right in front of me announcing this Monday, June 1st as the beginning of » National Cancer Survivor Week .. and highlighting the various planned celebrations.
I can tell you right away .. that yes, you do indeed appreciate life more. There is a thankfulness that comes. Because not everybody who goes thru cancer treatment is as fortunate. I dont know how long it will last, but for now, it is strong.
I dont see how somebody could go thru something like this .. where your very existence is threatened .. by something that has already killed those most dear to you .. and NOT come out the other end feeling a sense of gratitude. For life. For another day of living.
Radiation Scarring of Voice Box / Larynx » Sounding Like Patty & Selma (with Homer)
He sprayed the cocaine up my nose and scoped out my sinuses and my voice box and those areas. I heard him pointing out on the video screen to the med school student there some radiation scarring of my left ventricle.
They spent a lot of time with the scope up my sinuses this time. I've never had the scope up there that long. It's not bad in the beginning, but after a while it becomes more challenging.
My voice sounds like the sisters of Homer Simpson's wife » Patty and Selma. It feels like I have to use more force to get the words to come out .. like it's talking loud or nothing. Or maybe I have to use more force to get the words to come out at a normal volume.
It feels like I'm talking from deeper in my throat.
There were about six weeks where I had no voice at all, beyond a whisper.
I mean, my neck still has a nice, dark tan .. like I just spent two weeks at a tropical island. Only I didnt. That's a lot of radiation to give your skin a permanent tan, like that.
Back during my second or third week of treatment .. the first thing that I could feel that was being affected by the radiation was something in the area of my voice box.
I couldnt tell you exactly what it was .. but I could definitely FEEL it. It felt like I frequently needed to take of sip of water .. because my throat was dry.
"Wow," I thought. "They must really be targeting my voice box with the radiation."
That was the first thing I noticed from the effects of the radiation .. and that was fairly early on in the treatment. I could do that math in my head and see that it wasnt going to be good by the end of treatment .. if things continue how they had been going.
But what are your alternatives? You have none. Well, you have one.
I noticed that you picked up on the Lee Siegel story. I read his piece at the Times. Most provocative. Downright revolutionary. I was kinda surprised when I saw him sitting next to you .. that a swat team hadnt already swoopped by and bagged his ass.
Here's a passage that stood out:
Someone with character would have paid off those loans and let the chips fall where they may. But I have found, after some decades on this earth, that the road to character is often paved with family money and family connections, not to mention 14 percent effective tax rates on seven-figure incomes.
The graphic of burning the draft card was clever and provocative. I wonder who came up with that.
I like how you pressed him repeatedly about how they were fucking with him. The government is good at fucking with you and at making your life miserable. [ "True that,"says Kafka. ] Especially when it's about the money.
The piece also describes the trials and tribulations encountered by those who co-sign for these student loans. I recall my 89-year-old Walk-in-the-Park friend mentioning how he had co-signed for one of his granddaughters and how she had simply dropped out and quit going and how he was now stuck paying back her loans and how awkward that was for him.
Anyway, I am soo glad that you are back at YF. Let me tell you. (There I go, again.)
My brother went to Yale & Tufts medical. He said he racked up a quarter mil in student debt. He said, "Bro, once you get accepted into medical school, they give you all the money you want .. cuz they know you're good for it. You just show them a copy of the acceptance letter and they say » 'How much would you like?'"
When he partnered with a sports medicine group, they paid off all his student loans and they took a chunk out of his paycheck until the balance was paid off.
If you need any orthopedic work, if you need new hips, for example, I can get you a good deal. Titanium, baby! They're designed to hold up to even the most intense forms of physical stress.
I never took out any student loans myself. Didnt need to. Had the GI Bill benefits after the military, and was working while taking a class here and a class there. It took me a decade to get the degree.
Sometimes I would save my money and take a layoff and go full-time for a semester or two. While collecting. Very nice. Easy to get jealous of kids who could do that for four years straight.
But when it is a rare thing .. living the life of the mind, which is the life of the student .. when doing that full-time is rare, I think you appreciate it more.
Sort of like the person » "who, being in a chronic state of wonder, is surprised at nothing."
I see you have some serious heels going on here at t=1:40 remaining, and the curves you sport at t=2:00 remaining made me so dizzy that I nearly fell of of my chair. I hardly heard a thing that Andy said.
They give me lots of CT scans, but I noticed that they're stingy with the PETs.
So I asked the pretty girl who grabbed my hand and pulled me up off the scanner bed today, "Does a PET scan cost more than a CT scan?"
She said, "CT scans only cost about $400, but PET scans cost like $1,600."
"Four times as much?"
She also said that most machines are either CT or PET, but that the one I was on was a 'hybrid,' with capabilities for both.
"The front part is the CT and the back part is the PET, which was added on."
I also asked her if she found working with cancer patients to be depressing.
She said » "Sometimes. Sometimes we see a patient for a while and then they just stop coming. That can be sad."
» Lying Very Still Inside the Scanner Tunnel with the Radioactive Sugar Looking to Feed Cancer
You think about a lot of crazy shit during the 20 minutes that you are lying on the scanner bed in "the tunnel" .. in the tube .. with the donut whirling around you at fantastic speeds. And while you need to remain absolutely still.
I thought about what me Radiation doctor had said »
"Dont freak out if they find something on the PET scan .. because these PET doctors are reluctant to sign off on a scan if it has even the slightest thing wrong. And they arent the ones who have to deal with their own results. Many times we have gone in afterwards with surgery and found nothing."
I was actually a little disoriented .. because I had fallen asleep in the chair .. with the heating pad and the massaging vibrator for your lower back.
I was tired. Because I havent slept well the last few nights .. with the implications of the test upon me .. trying to fuck with my head. You know. I mean, it feels like everything .. all my treatment .. comes down to this one day. To this one meeting. Because, in a way » it does. I hope I will be able to get to sleep the night before the big meeting.
[ To give you an idea of my fatigue .. I woke in the morning and went out to the kitchen to turn on the electric teapot to heat the water for coffee. Since I was still tired, I laid back down for a few minutes while the water was heating .. and fell back asleep. For a few hours. ]
So when they opened the door to the private waiting room (for radioactive people) to come get me 45 minutes later .. after they had shot me with the radioactive sugar .. I was half asleep. More than half, actually.
They *do* use an I-V for the PET scan, but the I-V is only in your arm for a few minutes. They also prick your finger to check your blood for sugar. But I hardly felt that.
The heater in the recliner was nice, because they keep these medical places cold as a meat locker. (They brought me a warm blankie, too.)
As the PET scanner whirled around me, I mostly tried to see if I could feel any cancer in my body. I mean you have twenty minutes to kill, so to speak.
And they want you fasted for the test. They want any cancer cells in your body to be craving sugar. Cancer loves sugar.
So I hadnt ate for 9 hours .. and was feeling light-headed. Spacy.
Speaking of going there every day .. I rode home today with another Moores patient. He has Burkitt's lymphoma. You've never heard of it .. because it is so rare.
This guy was 52 .. a grandpa. Twenty-five years ago, he had Hodgkin's lymphoma, and the doctors told him another form of lymphoma would return later in life. (They said definitely it would.)
Next week they are gonna cut out a part of one of his lungs and he is happy about that.
He died 6 times .. in one day. They used the electric paddles to bring him back (6 times). "Clear!"
I said, "Dude, I've never met anyone who died before. Did you see the white light at the end of the tunnel? Did a guy in a glowing white robe walk up to you?"
The driver (Danny) asked, "Did you float up to the ceiling and see yourself lying on the table below?"
He described the experience, but I did not really understand what he was trying to say. But no, he didnt see the white light at the end of the tunnel.
He goes to Moores everyday .. even on weekends and holidays. (He'll be there tomorrow, Saturday.)
He does not get radiation (.. like I did). He is not even getting chemo. Rather he said that a fungus is growing in his lungs, and that he gets this medicine daily that keeps the fungus from growing and spreading.
He said that BOTH his parents died of cancer, along with ALL FOUR of his grandparents.
He had a small, green bottle of oxygen with him and wore a white mask over his mouth and nose. He sat in the backseat of the van we were riding in.
He takes morphine for pain, but said that the I-V morphine works great, but that anything taken orally takes 3 to 4 hours to work because his body is in such a compromised condition.
I mean, this guy is basically a walking death sentence and he seems so cool about it .. so seemingly at ease.
We even had to wait to pick this guy up, because he wasnt ready to go when we got there (.. at Moores, the driver picked me up at Thornton, right around the corner).
Anyway, he didnt know how long it would be, so the driver asked me how I felt about waiting .. and I was totally cool with it. Like a part of me wanted to talk to him. Like the universe was leading me in that direction.
Feynman's 1979 Lectures on QED » A Strange Theory of Light & Matter
One of the main ways in which I resonate with Feynman .. is that I also have a knack for breaking down complex concepts into something people can easily grasp. And I appreciate the opportunities for growth that come with difficult problems.
Interesting how Feynman linked understanding, which we normally associate with academic learning .. with compassion, which we dont. It seems like a play on words, at first. But then you see its not. That's why I like it. One of the reasons, anyway.
[ Blaise Pascal (1623-1662) .. from his Pensées, which are a collection of fragments from an unfinished work (his life's work) and published in 1670 after his death. They are roughly 350 years old. The free Kindle version comes with an intro by TS Eliot. (Holy macaroni.) ]
» The clinical trials girl called yesterday .. to see how I was doing and to give me some important dates .. for both a PET scan and also for a CT scan. She said » "This is the time when we see if the treatment worked."
Cancer is No Friend
"If the treatment worked?" I said. "I thought it *did* work the way we expected?"
» Reflections on Agreeing to Participate in the Clinical Trial (as #23)
Back when they presented me with the option of participating in the clinical trial (.. "We wont think any less of you if you decline, but we encourage all patients to participate in any trials that they might qualify for.").
I qualified for this trial because they said my cancer was deemed » advanced. (An advanced stage of cancer is not a good thing.)
I remember thinking two things.
1. That I would like to do my part, if I am able, to help forward the medicine, the science, the technology, the biological response.
2. I aslo remember thinking that I didnt want to come to the end-of-my-treatment and discover that I was not cured .. and that I didnt do everything possible .. to kill that fucker. The mass of living-dead zombie cells, starting their own colony, their own community in your body. "More sugar! More blood."
Sorta like the point I am looking at here in just a few weeks. Which is why I have been thinking about this stuff. This existential stuff. Not a place frequented by very many.
The second-guessing mind would wreck havoc on your decision-making apparatus. I knew that I didnt want even the possibility of that. So I agreed to the trial .. right there on the spot. "Where do I sign?"
She says » "Feel free to take it home with you and look it over. You can call me if you have any questions. We still have time before treatment begins."
"Let's do this thing, momma .. this genetically-engineered thing. Bring it. Bring your bio-hazard."
Even if it meant I would experience a few hours worth of "very uncomfortable, very unpleasant flu-like symtoms, and feeling tired the rest of the day."
Actually, I found the 'discomfort' to be significantly worse than the flu. But it lasts only a hour or two (or three). Then you go home and sleep for 18 hours straight. Getting up only to change your soaking-wet t-shirt.
After a few days, you are pretty much back to normal, and actually feeling rested .. from all the hard, comatose, deep-dream sleep.
She said, after this 4-month scan, they schedule recovering patients for a PET/CT scan "every 6 months."
Nothing [ you can do ] beyond eating as much as you can. And rest. And not worry or stress about shit. Which is easier said than done, sometimes.
Because my mouth is kinda dry .. I have to drink plenty of water (or orther liquids) with meals, which tends to dilute the digestive acids in your (chemo'ed) stomach.
I dont know if this is the reason why .. but I cannot eat like I did before. I get full much more quickly and almost never feel hungry. So I have to MAKE myself eat .. even when I'd rather not. Or when my stomach would rather not.
I know when I need to eat because I start getting spacy, lightheaded, sometimes even dizzy. After bending over to pick up something off the floor, I sometimes get the swirlies. Where I look for something sturdy to grab hold of until it passes.
Sorta like the feeling you might get on a roller coaster. Then I eat and soon after I am feeling less ditzy. More normal.
Now physical activity does indeed stimulate a degree of hunger, but anything more than a 10 or 15 minute walks wipes me out for a day or two (or three, sometimes).
So I try to thread the needle and exert physical energy, but not so much as to wipe me out .. at least not for more than a day. (One day is okay.)
And what if they find something on the PET scan? The clinical trials girl said » "Then we would have to come up with NEW PLAN."
It has my head spinning nicely. Thought-provoking ideas. Deep.
I cant read very much of it because it is so rich .. so much to think about, so thought-provoking. Sometimes one or two paragraphs keep me preoccupied from moving on ..
.. like I feel like I am just not grasping what is being said. Conceptually.
I somehow feel uncomfortable moving on before I feel comfotable that I have grasped the essence of the section I am reading. The average section is only a few pages, if that, so we're not talking about a lot a text, and I am no dummy, intellectually.
And sometimes, after reading a section a good number of times .. I will see something that I didnt see before. And I can hear myself talking to myself » "Dude, you read this section a bunch of times .. how could you not have seen this before?"
I dont know about you .. but for me, when I read something that strikes my consciousness .. in an illuminating sort of way .. in a Fourth of July sort of way .. I tend to miss what comes after that moment.
If you study up on mp3 encoding (.. or any audio encoding, for that matter) .. which is generally designed to produce (evoke, retain, preserve) the maximum audio quality while (at the same time) minimizing the amount of information (bits, bytes, kilobytes) used to describe that sound ..
.. uh, you will find that the encoders can safely discard the bits of a quiet part when it comes directly after the loud part. The loud part causes your ear to miss the quiet part.
So I am guessing that this is sorta-kinda the reason why I am missing some of these parts. Because yes, it does seem odd.
But this stuff is too personal for me to discuss, because it feels intimate. Not for public consumption.
I will say that I have gone beyond the verses that Bosworth highlights .. to include the verses before and after .. to get a sense of context.
But the thought comes to you .. that the cancer was a good thing .. because it caused you to seek out things that you normally wouldnt have.
And that is where I got the title for today's entry .. when a voice in my head said » Cancer is no friend.
Your priorities also change. Rather dramtically. Things that used to be important are now » eh, not so much.
I mean from the very instant that you receive 'the call'. Truly a remarkable thing .. that you simply are in no position to appreciate at the time.
And I have been thinking about my life .. and where I have been .. and what I have done .. what I have accomplished.
Because of this 'advanced' perspective of where I am now, I can look back and see the things, the points, the events that proved consequential. Things which, at the time, did not seem very much out of the ordinary.
And I could easily identify one of these times. One of therse points. One of these events. To which I have assigned the code-name (and my provisional title, which always changes) » The Secret Lighthouse at Thousand Steps Beach in South Laguna.
And that would involve the Film school girl. So I may have to discuss her. I feel that we have safely passed the statute of emotional limitations. But she would not be the main focus of that piece .. like I have done with others.
An unexpected fork in the road. (You know how life will do ya, sometimes.)
Forks with turns so severe that you find yourself wondering » "How the fuck did I get here?"
It will definitely challenge me. And dropping little breadcrumbs like this is how I trick myself into doing it. Otherwise I will just do something easier.
But before I describe that .. I first want to mention a couple of things .. quickly, which we can return to later, because my exploration of key point #1 will no doubt take some time. Because I have been thinking about it, lately.
How and Why Dostoevsky » Sees So Clearly Across Class/Social Lines
But I can see now where Dostoevsky got his knack, his flair for seeing acutely into social differences ..
.. and the relationships that these differences ('inequalities'?) produce.
Because his dad (Dr. D. the physician) was originally not a part of new nobility that was instituted under Peter the Great (1672-1725) for exceptional civil service.
But then he does become nobility (for exceptional civil service as a doctor), which comes with the right to own land.
But you have to buy it. It isnt just given to you. (Like I thought.) But a few generations back, the family (on dad's side) WAS nobility .. in Lithuania. But along the way, one of the ancestors fell on hard times and lost everything.
And then, three years after becoming a nobleman, dad buys a small estate and (a year later) a whole freaking 'hamlet' .. which comes with serfs.
So the family (history) IS a member of the land-owning gentry, and then they're not. And then they are again, but not really, cuz, altho they are officially part of 'nobility' in early nineteenth century Russia, they are poor as shit and deeply in debt .. from purchasing the hamlet.
Doctors in nineteenth century Russia didnt get paid very much. More prestige than money.
So Dostoevsky, as a boy, is going to be exposed to this family history of criss-crossing back-n-forth across social class lines .. and also interacting with serfs, which are sorta like slaves. Plus, in prison and at the camp, he lived with peasants.
So I can see how all these foundational factors are going to influence him and train his eye to see the nuances of class differences.
He was sorta living in both worlds, yet neither one fully.
Anyway I am finding many more similarities between my life/family and his. I am starting to see why I am drawn to him. Why I understand him. Why we resonate.
Similarly, I can also see why he is so at ease in discussing religious themes .. and this is because religion played a much larger role in the life of the nineteenth century Russian .. than it does here in the United States in Third Millenium (Twenty-First Century).
While Dostoevsky still represents something of a mystery for me .. he no longer seems such the mystery.
I have finished the first chapter on family which finishes by getting rather deep into his love-hate relationship with his father.
Reading that part actually fucked me up .. fucked up my head .. had me feeling very agitated (.. even more agitated than dealing with cancer).
The way the father is described reminds me of my own father. I will get some quotes for you later.
But the essence of it .. is that the dad may be fucked up, but he really tried and he did a lot of good stuff, too. So you cant just be mad at him .. because there's a lot about him that you DO like (love).
But this doesnt mean that the fucked up parts of him didnt fuck you up .. but causing you to warp your own personality in order to adapt to your parent's (rather severe) dysfunction(s). And even their neuroses.
And the book captures this so well .. that it took me away .. to distant emotional plces that I didnt even know were there.
Like I said .. I was feeling very agitated.
In some ways Dostevsky's father was worse, and in others my father was worse.
There were parts where I found myself wishing that own dad were more like Dostoevsky's dad. And there were other parts where I thought that I simply couldnt handle some of the shit that his dad put him through.
Upsetting to even think about.
His mom died before his dad died .. which is the same thing that happened to me. Lots of little parallels like that.
Such as he also had a great mom. Makes it easy for me to relate. But especially his complex feelings toward his dad. At least, for right now.
This is not the passage that I was referring to earlier, but rather a telling excerpt that shines a light on where his talents and strengths lie and maybe even why. See here »
Hallmark of His Genius » Exploring Psychological Paradoxes
The ambivalence of Dostoevsky's emotions about his father was also, unquestionably, of the greatest significance for his future. No doubt it was the fluctuations of his own psyche between resentment and filial piety that he first glimpsed the psychological paradoxes ..
.. whose exploration became the » hallmark of his genius.
And anyone can locate the emotive roots of his Christian ideal in the evident desire of the young Dostoevsky to resolve this ambivalence by an act of self-transcendence, a sacrifice of the ego through identifiction with the other (in this case, his father).
I actually get that. Perhaps a little too clearly.
"Are you getting a slice of pineapple pizza?" I asked. Cuz that is what she usually ordered. That, or the lasagna. (Everything at Al's is super yummy.) But her favorite was always Al's garlic bread.
It's just a little hole-in-the-wall with great Italian food. Always busy. And crazy-busy around the meal-times. Kinda cramped inside, but this part of its allure. Because the kids loved it. Dozens of times.
And they always had to get some Skittles from the 25-cent dispenser. They would gladly ditch the pizza for the Skittles .. if you let 'em.