These were some interviews I did for survivor’s net about my cancer. it’s a bit tough to be live and speak in a clear non-contradictory way. For whatever it’s worth!
part 1
michael rees
Read This
Peripetics by zeitguised on Vimeo.
This is an on again - off again chronicle of my dance with HPV positive tonsil cancer that has moved to lymph nodes in my neck. I’ve met with two teams of Doctors and have also been advised by friends who are Doctors, and guided by the common sense of friends and family. Many of these people know my peculiar idiosyncrasies. I had already been seeing a psychologist who luckily has deep experience with cancer care. I have also met some excellent nurses and social workers. My network is beautiful, potent.
The prognosis is excellent. Some 90-95% of people with this malady are cured! I am on the fence whether I’d make this blog public but I’d like to make it available to friends and family who want to know whats going on. I’m turning comments on but I reserve the right to turn them off.
i’m in for an adventure, destined to be changed for the better, my perceptions of human life deepened and enlarged. In my first years in college I studied mythology and rarely caught a story without some significant challenge to the protagonists. Those challenges always bear the seeds of change and understanding! Viva metaphor! Viva the facile mind! I hope to see opportunity in adversity!
I feel very good right now. I feel only that I need to correct something that’s off. My spirits are good. I’m grateful on that February day when I heard the diagnosis that it was net positive!
been there done that, ain't gonna happen any more!
I’ve been bad about posting since June 15th. I put everything aside and let the healing take place. I’ve finally returned from 6 weeks in California in the San Bernadino mountains. Surprised to some extent how far I needed to go, slowly but surely my body became incrementally better. I found it difficult to be active and maintain momentum around physical tasks well into August. Yoga was a bitch at first and I still struggle with poses, especially balance poses. It was little humiliating. I’ve lost muscle as well as weight, and it needs to be built back up. I had the 3 month pet scan which tests for the treatment’s success. I got the all clear and reviewed the scans, slice by slice with my doctor. Very grateful to get this news. When I think about all the people that helped me, spoke to me, guided, me advised me I was humbled. I tried to reach out to everyone and say thanks. So much knowledge and experience.
There was a lovely experience at the end of a yoga class during shivasina (ironically “corpse pose”). All the major cakras, front and back, stood out from my body looking similarly to a trumpet flower. They were appropriately colored and bore a corresponding number of leaves as per my understanding. It was a gorgeous site to behold. Each was vibrant and dynamic and crisp. The subtle body gave me the A-OK well in advance of my last Dr’s appointment. This was a soothing balm. To be within the chamber of something so ancient, so much smarter than me, but also to be able to see it and experience directly.
Despite the difficulty of this treatment, there were so many little gifts like this, either from my self, meditations, yoga moments, or the care of others, especially Mary Ann but also all those who came to visit. It is so basic to receive the kindness and well wishes of others. It touches you and changes you. It reminds you that you are in concert with others always and forever.
I’m cautiously grateful for the medical system. I say cautiously because they are clearly so confined by the legality of what they do that they under communicate— by design. I liken it to going to a heavily defended chinese restaurant. You can hear mandarin spoken as the primary language. They will answer questions but nothing is offered. Exchanges takes place through layers of bullet proof glass with minimum exposure. Many of people are well meaning enough but you’re on your own. Without your own support network I’m not sure how anyone would do. The nurses are the primary communicators. I feel that the translate between the Dr and the patient. Different doctors have different modalities.
This is probably my last post in The Chronicle. I am gratefully relieved, maybe quietly ecstatic to still be here. Now I have some more time to get my drill together, whatever that might be. I went looking for a picture of someone ecstatic, someone that could encompass how I feel. John Currin, Golden Nude.
My First Solid Meal
Oh my, the time has come. Last night I cooked and ate for myself. I made a vietnamnese noodle dish with fresh greens and rare steak. I ate the whole meal! This morning I’ve woken up to the desire to make and eat an omelet. It just seems, luckily, that each day I find myself on a new rung of the ladder. Miraculously it is due to no fault of mine but rather to the body which just works its way back to stasis. Treatment was no walk in the park but I’ve found this post treatment period to be rough. I sleep a lot, I get dizzy in my head when I get up too quickly, and I feel kind of fuzzy. But then these little enjoyable changes, little notches up happen and I feel as if I’m returning. Now, let me take that nap...
posting, fasting, waning
Well, I’ve not done so well at eating and maintaining weight. Currently at morning’s mark, I weighed 214 pounds. I can’t remember the last time I weighed so little. I’m sure its more than 30 years ago. Someone as tall as I am should weigh between 190-230 pounds. Most of my adult life I’ve been around the 230 or higher mark. 214 lbs looks good I have to say. I don’t feel slight or skinny. I’d love to keep it so but am equally sure that when I’m eating regularly and secumbing to the emotional vagaries of eating, it won’t be easy to maintain such an elegant poundage. Even so, I’m too thin. I hope I can do better with the liquid diet and then transition to solid.
35th day of radiation come and gone
So I wore stripes for my breakout from radiation. No more radiation for me. DONE, FINITO! BASTA! I am completely happy to let it go. So long linear accelerator! Thanks Quantum Companion! Thanks to Memorial Sloan Kettering Staff and Doctor’s. Thanks for the vast medical complex. Time has passed fairly effortlessly. So far so good!!
its all rebuild from here. Keep my weight and add to it while trying occasionally to get food from liquid to solid. Regardless, I am now post treatment!
illness as metaphor or random act of bodily breakdown
As brilliant and important as Illness as metaphor (codified by Susan Sontag) is, the other counter narrative is the prevailing one, namely that the body breaks down, that 1 in 2 women and 1 in 3 men will experience cancer in their lifetime. (Hopefully a cancer as treatable as mine!) This is what statistics tells us and they leave the soft science to psychologists, mystics, pot smokers, and miracle workers and other well meaning people who seek to examine the problem along new boundaries.
I will say, in my own case I don’t have a sense of knowing where I contracted the hpv virus and for how long I’ve had it. I only know that i’ve known something was brewing in me for well over 3 years. I complained regularly and heard repeatedly that everything was ok. I left 2 doctor’s over their mostly cavalier attitude towards my aches and pains. I was almost grateful on February 14th to learn they added up to tonsil cancer that had moved to my lymph glands in my neck. Finally, I was relieved to know I had a malady and the course to cure it.
But I’ve been thinking through the illness as metaphor aspect. And for purpose of this post, I’m gong to consider it here. I think this is something internal and its veracity can only be tested by considering it deeply. Turning it over and over in your mind and comparing it or examining it with others, those who are willing to go there with you. My wife, my psychologist and so on. But in the end it is for me to discern the efficacy of any claim. And I have a few.
Stress is reputed to be the cause of much disease in our culture. and we have plenty of it just living in our times. (I think there was plenty of it in other times too. To stress is to be human or any other type of animal and insect life.) Most everyone’s life is spent getting food and getting sex or the myriad of stand ins for that foundational stuff. But thats the stress everyone has, nest pas? What about me, my own particular stress.
Political stress. I’ve thought about this deeply. Firstly, I’ve thought about the local politics of my department and its political stress for years. Getting tenure is a grueling process. Colleagues can turn on you on a dime. Or they can also just be against you and anything you do, no changing their mind. They’ve tallied you up and you’’re out. And they can also be for you and I was fortunate to have a great mentor and we continue to have a great friendship. Then one day you get tenure and your a made man (man in my case). Then there’s a whole new set of concerns.
What’s interesting is people’s strength and weaknesses in the political arena are mostly right up front adorning the sleeves of their shirts and coats. You can quickly see if someone is out of their depth even if they know it. You can evaluate the people that see into and through the system and understand hierarchy and how to play effectively to it. The most apparent tell of people’s political ambitions and skills is when they meet power. Just watching closely you can tell oh so much about your colleagues, who to watch out for and who to trust.
And then of course, trust comes hard, if at all. People who cannot trust at all will wall themselves off and probably make up the most of your academic colleagues. They tend to be hurt and miserable in their jobs. It reminds me of the Joni Mitchell song “All Romantics share the same fate someday: cynical and drunk and boring someone in some dark cafe.” You must give something of yourself to create healthy work place political relationships.
And then there are people who are your competitors, sometimes just on principle because you represent the “type” that their politics demands you should be against. I have two of these. At this point I won’t broadcast further only to say its sad. People can do so much more together than apart.
This cancer has reminded me of my purpose all the more. And what is that? It is not teaching people who don’t want to learn! Or at Least learn the stuff I have to teach. It is to quote Kurt Vonnegut “to remind people that they are alive”.
Merganser eats Snake: identifying with nature.
Once I was hiking under the George Washington bridge in a gorgeous little park. You can walk to the top of the palisades and then back down again. On the way up you’re only seeing the rocks of the path and lots of plants. Its a very well kept trail. On the way down you continue to seek views of manhattan, as you are able, or better sneak views at a certain risk. Once down on the asphalt service road, the river stretches wide to the New York side and leaves a little bay. Much of the lower park was probably the result of the left over mud and sludge from building the bridge, its landfill of the best kind. On holidays people are always partying with their families, barbecuing and eating.
Well I’m looking into the bay and see a merganser doing some fishing. Somehow he’s gotten a hold of a snake and he’s tussling with it, mind you they’re both struggling on top of the water. The merganser lets off occasionally and the snake tries to get away. Without fins or legs I imagine its hard for the snake to build up enough speed to clear itself away from the merganser. So there’s a dance going on where the merganser lets the snake go and then grabs it with his beak again and reels it back in. The snake is dangerous too. He flogs around and strikes back as best he can. At one point I can see the merganser realizes he’s either got to eat the snake or let it get away. It was strange because I felt like I could really sense the hesitations and the returns. I was with both of them. I could see the merganser was reticent to eat the snake live and would rather kill it first, but he didn’t have enough traction or counter force to pull it off and the snake was struggling mightily too. It lasted maybe some minutes and the merganser realized he’s just going to have to eat the snake live and suffer the consequences, which he does before my very eyes. It was such a sight to behold. The bird just swallowing down a thin 18” snake.
But that wasn’t the all of it. The snake didn’t stop just because it landed in the merganser belly. The struggle didn’t stop. The bird was twitching and shaking ever so often, waiting out the period where the snake would finally lose perch in this world either through its wounds or because of the inhospitable stomach of the merganser. After several intervals with time lapsing between, the merganser’s regret seemed to subside into the sense of the commitment of swallowing it. It was over and done.
I can’t help but be reminded of this story as they put a feeding tube down my nose and into my belly. It was hard going down and very uncomfortable to have it inside me. Little by little I got used to it and it got me through most of the Memorial Day weekend (thank god no hospital stay), until about midday on Monday whenI had a sneezing fit. The hose just kept tickling my nostrils and I sneezed and sneezed until whoops there was some snaky looking thing in the kitchen sink. I was shocked to realize I had sneezed the damn thing out. I can’t say I felt at one with the snake in the belly, but I felt sympathies for the merganser as he twitched and winced with each turn of the snake. In some ways we couldn’t be more different in other ways I am grateful to have an empathetic response to another being.
I vomited at the whitney biennial.
I have been slacking hard on posting.
Mary Ann and I decided that since it was the week before my last chemo that we’d go out to the artist opening of the whitney biennial. What used to be kind of a smallish affair has blossomed into a ridiculous extravaganza. A real see or be seen event—the hollywoodification of the art world. The line was so long and foreboding we decided to slip into bubbies and get something to eat. Of course I can’t eat anything but my highly limited milk plus chocolate ensure plus powdered chcocolate, so we were watching Mary Ann’s diet. Luckily at the table next to us I recognized Dennis Adams, an artist whom I’ve admired since the 1980’s. We struck up a conversation and he suggested we mosey over after our nosh and see if the line had diminished. We did as much and then entered the museum. I never saw it so full of people, and I’m guessing so full of people I know. In Front Mary Ann started up an interaction with David Zwirner and family.
Once we hit the top floor and there was Mel Chin, Meredith Palmer, Mark Sheinkman, Yun-Fei Ji and all the attendant parties of people next to them, all lovey people caught up in the spectacle of this event.. I was caught by how much exhaling was going on. I’m so super sensitive to smells and tried to mitigate the effect upon me to less and less effect. Eventually the thought of all that exhaling caught up with me and I said Mary Ann, we’ve got to go. I felt terribly about it as I was talking with Mark Sheinkman who I have always enjoyed talking with. We headed to the elevator and were able to get on. More exhaling, Yuck! We made it down to the 5th floor and for fear or losing my cookies in the elevator and ruining it for everyone for the night, I dashed out of the elevator and into the back stair well looking for the bathroom all the while (which had been on the 8th floor). We headed further down and were stuck at the 4th floor with a do not proceed sign. And I was stuck with that overwhelming acidy feeling of i’m Losing it right here right now and of course let fly. I’ll never forget the look on the woman’s face who sneered at me for vomiting presuming that I’d lost control of my alcohol intake. But after only seeing maybe a dozen works I want to clearly say that the time I vomited at the whitney Biennial had nothing whatever to do with the whitney biennial.
A guard showed up and wouldn’t let me leave. “Please stay sir!” An command in the form of a public safety announcement. Then a lovely reasonable fellow showed up. I so appreciated his even handed response. He joked a bit about the spectacle of the biennial. When he heard I had been in a biennial he joked he that he wouldn’t hold it agains me. Then he realized that might be considered inappropriate and he was after all a representative of the museum. He showed concern for me and my condition. He asked what I would like to do and I responded to continue down the west stair case and out. He escorted me down all the while being a mensch especially in contrast to his nazi ish colleague who showed not a bit of concern for me. I thanked him for being so even handed and asked his name. Mark Diblasio.
Letting it got at the whitney biennial.
more things that happened on this day
The adventures of the week are all bodily. Today I helped Michele Thursz take down my pieces in her show In the Image of. The physicality of deflating 4 large pieces and rolling them up while the air is sucked out of them gave me some robust excercise for the day. Anyone that goes through chemo and radiation experiences constipation. It’s kind of refreshing that nurses and Dr’s discuss it naturally. Of course no one in polite company wants to hear a word about it. Suffice it to say today was a day of movements.
B is for Bang, when Thomas Heatherwick was an interesting sculptor.
Interesting to compare this day to other days receding in history. In that time historians on some internet page only found it notable to mention 14 dates out of 75. So on 61 days on planet earth people were busily going about their lives enjoying themselves and their movements and their own histories.
May 11 in history:
2001 - China American spy plane
China agrees to free crew members of an American spy plane that had collided with a Chinese fighter plane, killing its pilot.
1996 - Lebanon Israel Air Strike
Israel has carried out a series of air strikes on Hezbollah targets in the Lebanese capital, Beirut. The assaults on Hezbollah targets in "Operation Grapes of Wrath" are in retaliation for rocket attacks two days ago on northern Israeli settlements.
1994 - Serbia US Air Strikes
Serbia facing additional air strikes from US on 5 additional Muslim enclaves and to try to force the Serbs back into peace talks.
1982 - Falkland Isles Naval Blockade
Britain imposed a Naval Blockade with a 200 mile Radius on the Falkland Isles today and warned that Argentina Ships within that would be sunk as hostile following the invasion of the Falklands by Argentina , both sides are now preparing for war.
1980 - U.S.A. New Rules Re Sexual Harassment
The Equal Employment Opportunity Commission issued regulations prohibiting sexual harassment in the workplace of workers by supervisors.
1979 - Uganda Idi Amin Deposed
Tanzanian backed rebels seize control in Uganda and the Ugandan dictator Idi Amin is deposed as president of Uganda and flees to Libya.
1970 - U.S.A. Apollo 13
NASA launched Apollo 13 , America's third manned moon-landing mission, from Cape Kennedy, Florida today, Two days after launch, an oxygen tank on the spacecraft exploded, forcing the astronauts to abandon their mission. Although they had only a small supply of oxygen, water and power, the Apollo 13 crew managed to safely return to Earth in the spaceship's lunar module.
1968- U.S.A. Civil Rights Act of 1968
President Lyndon Johnson signed the Civil Rights Act of 1968 , prohibiting housing discrimination and providing protection for civil rights workers. President Johnson, voicing outrage at the slaying of Dr. Martin Luther King and the violence that followed it, has signed an historic open-housing bill, The new law will prohibit discrimination in 80 per cent of all housing sales and rentals by 1970.
1965 - U.S.A. Palm Sunday Tornadoes
The Palm Sunday Tornadoes of 1965 strike Indiana and the surrounding states. In Indiana alone, 1200 people were injured and over 135 were killed.
1961 - Israel Adolf Eichmann
Adolf Eichmann went on trial in an Israeli courthouse today. accused of mass murder and the helping in the death of millions of Jews in German Concentration Camps during World War II.
1957 - Singapore Self Rule
The British government allows the island colony of Singapore to govern itself under a new constitution agreed in London. Great Britain will continue to control external affairs and defense.
1953 - U.S.A. Prison Riot Minnesota
1000 Inmates from Stillwater Prison start fires, smash windows and shout profanities at the guards during a prolonged prison riot.
1947 - U.S.A. Jackie Robinson
Jackie Robinson took to the field for the Brooklyn Dodgers in an exhibition match between the Brooklyn Dodgers and the New York Yankees becoming the first black player to play in Major league baseball. On April 15th he took to the field for Brooklyn Dodgers on opening day when the Dodgers defeat the Boston Braves, 5-3.
1945 - US Troops Liberate Buchenwald Concentration Camp
United States forces liberated a concentration camp in Buchenwald, Germany today. Over Twenty thousand inmates were free today after its capture. Since 1933 , approximately 200,000 persons doomed to sadistic death or a living hell passed through the gates of the electrically-charged barbed-wire enclosure as infamous as the camps at Dachau and Oranienburg.
when I’m free to eat
When I’m free to eat, I’ll eat crusty steaks; cranberry walnut rye toasted and coated with butter, sometimes honey, sometime lingonberry; shredded pork with apple junks; and anything with textures, rich delicious textures. A petite marmite. A red Chile stew with posole and pork. Some mussels in a rich wine and mustard sauce and crusty French bread. A pasta fagiole. A chicken Parmesan. Lasagna. A falafel sandwich. I know, these are mostly winter things but its the deep craving that I feel. I am not free to eat food based on some whimsy of appetite. This restriction shows me how I manage my emotions with food.
A rich bourbonny cheddar grilled cheese with Dijon mustard on thick slices of toasted sourdough. Maybe include a broad slice of heirloom tomato. Deviled eggs. Popcorn popped in bacon grease (I know, right!). Italian wedding soup with tiny meatballs. Swedish meatballs with noodles and lingonberry on the side. Peanut butter and jelly with lettuce, spicy chutney, and thick slices of cheddar. Thick sliced smoked bacon with a chanterel mushroom omelet with pecorino romano and tightly sliced poblano pepper and onion.
What can I eat now? Anything I can get down. i can’t taste anything accurately. Taste’s register is way out of range. Any kind of spice which asserts itself is inedible. Bland foods are best when I have something to wash them down with, either water or —GASP— boost or ensure.
These aren’t the only things I can think of, strange though they are in proximity to one another. Its like I’m an expectant mother putting odd combinations together to solve an ineffable craving, full health. I labor to get through this travail and to give birth to myself anew. Except, I can’t eat any of it. Mostly, right now I can only get down boost or ensure or some generic brand of medical shakes. I feel like these drinks need their own special entry they are so awful; so sugary as to be cloying; so chalkey as to be obnoxious; so dominant as to be the very expression of corporate capitalism. And they stink. But they deliver 350 calories per 8 oz drink. Just what the medical military entertainment complex demands.
I can’t help but feel that this cancer, as curable as it is may not have the transformative aspect that so many do experience when they’re healing. Would I feel let down at not having that transformative experience? Not really, because, I’ll have my health. Something so mundane but so essential.
Note: I was recommended to read, Cancer as a Turning Poing: A handbook for people with Cancer, Their Families, and Health Professionals by Lawrewncxe Leshan. Its a generous workbook for people who would actively develop the metaphors of their illness. Oh and why not: Illness as Metaphor by Susan Sontag.
over 1/2 way through
I spent the weekend with friends! Mary Ann and I organized several people to come over to the house. It worked out to be international day with Feride from Turkey, Louise from the Netherlands, and our aunt Delphia and cousin Angela both of whom have lived abroad in multiple lands. It makes me want to travel! I’m eager to get up and go! To hell with the treatment! Well, it’s a sentiment at least!
This week i’m over the hump and on the back side of the treatment mountain. there are still challenges to come but it feels fairly incremental from week to week and hopefully very manageable. I have done 2/3 chemo sessions which really last a week and my body seems to have handled that just fine. Sleepy but all the blood indicators are good and the kidneys are doing fine.
I continue to imagine the tumors being suckled, chewed on, and drained off by some large fish, a hybrid between a carp and a piranha. After a session I pull out the vacuum to suck up the remainders. Viva l’imagination!
So long...
so long saliva, I knew thee well.
Symptomatic
Symptoms are appearing as predicted. I can only get liquids down. No solids. If I try to eat without a dose of oxycodone the pain is too intense. Not eating or eating significantly less than normal is dangerous as the chemo and radiation feed on the body’s reserve, including on the protein from muscle. I feel pretty good but the oxycodone makes me really tired. (Perhaps the chemo is a culprit to.) It is hard to understand why people are so interested in this drug. As far ias I can tell, it’s primary side effects are constipation and drowsiness and it doesn’t really get me high. I say good, easier to get off it when this is over.
Radiation side effects also include dry mouth. I woke in my sleep with a completely dry tongue. Quite the bizarre sensation. I never had a leather tongue before. It’s important for teeth not to be dried out. There’s danger in weakening these.
Food wise, the most offered alternative to solid food is boost or ensure two corporate products. Horrible taste and an example how these horrid products have seeped into the medical system instead of rich recipes of broths and proteins. Every doctor/nurse has said boost, ensure. I’m following a regiment of soups and liquefied solids. I’m waiting to try a product called benecalorie which adds calories to dishes. I’ll also dry double milk, where you mix regular milk with dried milk.
I’m reeling a little bit. There are a lot medications to keep on all with different consume times. Then there are the extra things: benadryl because I react to the dexamethasone (a steroid to keep my nausea down); for consitipation laxatives, stool softener; for mucous from milk products I use mucinex. For cancer and pain medications there’s several drugs during chemo week primarily for nausea, then there are the pain managers like gabapentin, oxycodone and lidocaine. I can hardly stand the lidocaine. The oxcodone does a fair job at helping me swallow the food. I’m in 16 out of 35 days. Not quite the half way mark. This is my second chemo week too. This time around with the chemo I only seem really tired. I’ve pretty much slept all day yesterday and all day today. I keep trying to get up and get going but I find myself drifting off to sleep rather than making the motions for a walk.
Looking at the photo below, I don’t really look sick, right?
knowing versus feeling
I lost a post. I think it was pretty well written and now I feel like I have to write it again, at least as well as I wrote it before. Oh the pressure.
It was about knowledge vs feeling. How can you feel something to be so true and know something that is just false. I say false instead of wrong because knowing isn’t exactly objective either. I gathered somewhere along the line that we have the remnants of an ancient brain in our guts, something that through evolution has migrated there. It is one of the reasons we have such a collection of nerves in the gut (digestion noted). This supposedly accounts for “gut instinct”. But this conundrum doesn’t let knowing off the hook. Knowing is a kind of feeling too. Its a mental process that counts on denying your “feelings” about things and focusing on what you can know empirically about them to reign supreme. It tries to be more objective. There is no science without statistics and of course we’ve all met these poor creatures who have zealously dedicated themselves to data. I’m losing the gist but wanted to conclude that there are no facts without values. It is so very difficult to separate them out. Now while we fiddle as Rome burns, in the background there are thousands of robot and data scientists constructing the world of statistical evaluation. Like it or not we’re going there. Feelings will be relegated to the play ground. Our vast inner life relegated to raves and week long desert soirees. Our subjective feelings will remain. As an artist I draw heavily upon this one state while playing that I know a thing or too about the other. And when you have cancer, you are living inner experience while the data and statistics of what work is enacted upon you. I return again and again to the harrow in the penal colony. Some sentence will be written on my back when this is all through.
evening raga
The initial drama of diagnosis is well behind me. The preparation for treatment and then ramping into treatment and that drama is also passed. Reading back, I see I was blithely optimistic, and now I settle in. This is sort of the professional part of it. When the going gets tough the tough get going. The irony of that is clear, there is no place for me to go, except to treatment. There is nothing to get started each day. Only steel myself for the steps ahead. The radiation isn’t bad in itself but its effects are bad and they happen fast. Today, I was warned by the nurse that pain is coming, as if to get me to take this more seriously. (I think she was reacting to me, I am strangely cheery about all of this.) That my mouth would lose integrity is possible. The goal now is to avoid the feeding tube. (I think its rarer and rarer these days). I plan to be an outlier as best I can.
This is the best time ever to have cancer. They can manage so many things that used to be major problems. I can’t help but wonder about the future: the IMRT therapy will probably be replaced by Proton Beam therapy which can control the depth of the radiation. Then further the immunotherapies or gene therapies will come on line making radiation obsolete.
tuesday, week three
Well it’s surprising how fast it’s come to only being able to down cold protein smoothies. All kinds of foods are just too much for me. Anything with texture... omg a wicked torture. Bread: like swallowing sand paper, 60 grit.
After radiation I felt like i’d been clocked on the jaw!
Its getting harder to swallow. I can feel the boat leaving the shore. Interestingly at rest, its not really a problem. Its only when I try to swallow. This is going to be an experiment in my ability to withstand pain through mindfulness and mediation. Spoiler alert, I’m not the man of steel.
The good part is that everything above the throat and everything below the clavicle feels just fine, great even. I’m getting ready to go for a hike and then meet with Willie Le Maitre and Siebren Versteeg later in the studio to talk about our contribution to michelle thursz’s show in the image of. I’m looking forward to it. I can talk fine and forget all about the malady when engaged. Ha ha, still a blabber mouth!
End of week two
Oh boy, what a week. It’s been amazing. I feel like I’m tripping the light fantastic. I don’t feel like i’m sick on a cancer slog. The symptoms of treatment are only beginning to appear. I would describe it as the radiated cells sloughing off the lining of my mouth. It feels like the tumorous tonsil is getting softer and smaller and I can’t tell anything about the neck lymph tumors. I want to make separate posts, hopefully in the next days about various things: tripping the light fantastic, my opening in Michele’s show In the Image of, my experiences on the radiation table on Thursday and Friday. Over indulging in taste sensations as a short term au revoire to taste, and some thoughts on metaphysics. I‘ve decided to take the password off the blog so that its open and will make a list for people to get pinged when a new post comes up. So much going on and here’s the long and short of it. At the end of week two no one can convince me that this is a net negative experience. This is a transformation for me. I feel myself kicking it up. Moving forward. Living large. This is a transformation!
olive oil thc
Oh my god, I had so much planned to write about, but then, kind of innocently, I got high. I brewed some cannabis in oil for 6 hours last night. I used a spatula to transfer the mj infused oil to a jar. I wiped most of the oil off the spatula. I didn’t think there was much on it at all, so I licked the spatula clean. Then as I was driving up rte 17 it came on strong. I don’t think it could have been more than a couple of drops.
So what happened? What happens when anyone gets high? I took a wrong turn and ended up getting lost. I was 30 minutes late to my appointment. Won’t be driving in that state again.
After radiation, I went to the grocery store. I had played Donna Summer’s i feel love during the treatment. I just really fell into that and felt love and vibrations. Yup, getting very trippy here!
Oh boy. Here’s what I bought: a pound of fudge. Manicotti, stuffed shells, mango leathers, ham and cheddar cheese along with sourdough bread (the sourest they had), can of root beer, cheddar potato chips, an exotic olive oil that cost a ridiculous amount of money, hot chocolate, grapefruit flavored sparkling water, and some other things. I couldn’t wait to get home to make croque monsieur sandwiches for Mary and I, which were delicious.
Oh boy. I thought i’d feel just a little tingle. I guess 30 plus years of being sober and drug free makes me exquisitively sensitive. Evaluation: hungrier but not smarter!
Meditation
I have a practice that is dynamic and electrifying. I feel so fortunate when I enter this space. I start by imagining a plane roughly parallel to the ground. It turns 90 degrees and begins to transit through my body, starting at my toes. I see the cross section shapes that are made at the intersection of my body and the plane and then imagine that there is a bit of heat at the intersection, almost a fire. The plane transits slowly up my body, lighting it up along the way, the calves, knees, thighs hips and pelvis, the waist and gut, the chest, warming and tingling. It continues to the neck. Here the plane breaks so that it’s cross section is a triangle connected to 2 extending planes. As it continues up, the area where my tumors are open up. Out falls these strange hexagonal packages. They seemed crystallized fossils, some relic, but this is a cleansing, a releasing. I have to stop myself from worrying where they go and instead let them go. Sometimes the screen (plane) agitates at the neck, then it continues up and flattens back into a single plane. Also tingling and activating my skin, eyes too, top of head. Here I let go and feel the light. Waves of color come over me mainly purples and greens but also other colors. Sometimes on glorious lucky days washes of gold and white light come over me. Sometimes I feel the energies of others, see outlines of things, patterns of people. And so it continues until I let off to return, definitely energized.
On some days I imagine out of my feet and the bottom of my pelvis (the taint) I imagine growing or connecting to huge roots that have grown into the ground. When i’m Not doing this sitting on the ground plane, they grow through the floors and then connect into the earth. they are magnificent full muscular organic.
I have also seen images of a vacuum that vacuums up around the tumors, sucking away the dead cells and even some living ones.
I both see these things, as in witness them, and collaborate with them. I do not create them. The images are not wholly mine and yet they are of my mind.
Sculptures by Henrique Olivieira. Vacuum by hoover designed by Henry Dreyfus.