As I begin to get side effects and symptoms I feel as if I’m on a boat watching the shore diminish in the background. It’s the shore of feeling normal. I may never return to just that spot.
michael rees
Mom and Dad
I can’t help but miss my mom and dad today. They took such good care of me when I was a child and I would have it again now, in the middle of this malady. (Ofcourse Mary Ann loves me up but good too! But, there’s nothing like a parental caress.)
I think of how they both died and how completely individual it was. My mother died of a massive heart attack, quickly. She had suffered plenty especially with the peripheral neuropathy, but when it came time, it was the big bang. Weeks before the main event, she meticulously said goodbye to people. I think she knew when she would die. I had seen her about a month before and I remembered after she died this was a letting go moment for her. Other people described similar moments with here where she seem to be closing up shop and saying goodbye.
My dad on the other hand constructed his death. He fell and broke his shoulder. Its not unusual for such an event to be the decline of the elderly. He went through a period of confusion and asked my brother one day “Am I dying?” When my brother said yes, he became clear and started to organize himself around that fact. Anyone who knew my father knows that he was a meticulous organizer. And so the count down began. He died one day after his birthday. He waited long enough for me to arrive and we had a special moment together. Later that day he slipped away in a process that lasted about 3 days. Both my brother and I were in the room when he breathed his last. I will never forget it nor lose the sense of gratitude I had in being there. I felt that he had chosen the day and worked to meet his deadline.
I am not dying but this is a brush with death. What I have, the legacy I have from my mom and dad, is to do this my way. To live my life and its ailments as I create it.
Dream, Cowboy, Covered Wagons
I dreamt I was a cowboy leading a covered wagon from out of a valley. There was a feeling that it was dangerous and we would sustain attack. As we got moving the feeling was we’re gonna need more guns. This was the start day of the treatment. I didn’t feel that I had enough appointments with Dr’s and it was important to get a better sense of my schedule. I checked in with friends to find out how much contact I should have while I’m going through this. This dreams was very helpful in identifying a place of concern.
End of the First Week
I’ve got the weekend to myself. Everyone at the Memorial Sloan Kettering Cancer Center Montvale (MSKCC) were so happy to have the weekend ahead. Everyone wished me a happy weekend several times. Must be a slog to work in a cancer center. Can’t say I blame them but the Montvale facility is bright and cheerful at least. Lots of art on the walls and lots of art books.
I’m feeling the radiation in my neck and throat but mildly. 3 zaps down, 33 to go. Only a little smoldering this week.
I have had feedback from many people who have had the malady or knows someone who has. Almost all say the same: stay the course, there’s Life on the other side. Stunning statistic: 1 in 3 men and 1 in 2 women will contract cancer in their lifetime according to Siddartha Mukerjee in the Emperor Of All Maladies. (mary Ann and I heard him sing with Jog Blues at St John The Divine in New York. He is partners with the artist Sarah Sze)
i appreciate all the love and concern my circle have expressed. I’m surprised at how I grab for control to feel like I have some agency here. I marvel at the mechanisms that I cannot take any responsibility for but are none the less mine: dna, rna, all the healing mechanisms in the body and so on that I rarely give but a fleeting thought to. Our frontal lobe, our conscious mind, sits upon a mountain!
Clichés and Platitudes
How do you avoid cliche and platitude while writing about something so important that so many other people have dealt with too. I’m thinking of getting shirts made with these sayings on them.
Not Sick.
Transforming
Not sick
In progress
Not Sick
No Way
Verner Pantone
Control Issues
Walking around the chemo area with my roll cart in hand I was thinking about control and how important it is for me to establish it, at least over the little things that I can. It makes me feel like this isn’t just happening to me. Of course you want to control things and many of them are beyond your control. Other people and their schedules for example. But its also an attitude, a way of thinking and has a whole complexity about it. Here are two statements that crossed my mind as I considered control
I’m Not the kind of person to get cancer. What kind of person is that? One that doesn’t have cancer.
The cancer club: i’d Never want to belong to a club that would have me as a member. Are you listening Cancer Club? (this is a pretty famous attitude that Freud wrote about and later many comics picked up on and did bits about: Groucho Marx, Rodney Dangerfield, Woody Allen to name a few.)
the Cancer Club is like that crazy Columbia Records scam from the 70’s. Once you signed up it just kept annoying you and billing you.
“There's black hole news of cosmic proportions, and then there's Belgian news. A stud bull breaks his penis while copulating because of an ambulance helicopter landing in the same pasture. Bull will be put down and farmer now sues emergency services.” https://bit.ly/2uYV58D
from a post from Angelo Vermuelen on fb
Now thats a tangle of control issues.
What does a person with cancer look like?
Totally individual question and depends on many factors. But two days ago when I went in to get my mask adjusted we were sitting in the waiting room. The mask is designed to hold you in place on the table so that you will not move as the radiation is happening. The technican came out and because I was the first person he saw he looked me up and down. I could see he decided I wasn’t who he was looking for. In a moment he looked over the whole room and said “Is Michael Rees here?”. This made me feel good- I took it to mean I was a person who didn’t look like he had cancer.
the mask
2nd Day
I’m done with the second day of chemo and the first day of radiation. The True Beam radiation machine was pretty cool in a perverse kind of way. It needs a team of italian designers to give it a make over but it had one exceptionally cool aspect. The head where the beam comes out is made up of a kind of lens who has columns of leaves that open and close automatically. As the head (a rather large and massive apparatus) turns about your head, these leaves constantly open and close modeling the treatment to the shape of the cancer in the neck and throat. It is fascinating to watch. On the one hand it looks like a sound diagram. On another level, I expect it to model itself into a face that would speak with me, like the liquid robot in terminator, maybe an early iteration of that fungible machine. And finally one tries to imagine the shape of the tumors. You don’t see the radiation beam, the only thing you see are these modulating leaves. I have experience with robots such as 3d printers, laser cutters and cnc cutters. This is clearly a level of sophistication up and it is a reductive sculptural process.
Warning geek out! Maybe a little too much to see but the titanium leaf column control is some where around 5:39 or about 3/4 of the way through.
Chemo First Day
Hola! Mary Ann and I started this morning at 7:30am (left the house at 6:30). That’s early for a couple of artists! Mary stayed up half the night, half working, half worrying. So she’s here with me ready to get some sleep. It’s my job to sleep, so I’m heading off once the chemo starts. The drip in the picture is saline solution to keep me hydrated. The nurse told me what beautiful veins I have. I was like, “what about my eyes?” So here’s some first day pics...
From Mary Ann
Welcome to week one of treatment. April 8, 2019.
Godspeed.
Treatment Week
We’ve been through so much to get to this week. I’ve had symptoms since September of 2018 which became pronounced the first week of January 2019 by a chronic sore throat in the upper left tonsil. Diagnosed on February 14th after biopsy, ct, and pet scan. I’ve met some 14 different doctors (surgeons, radiation oncologists, and medical oncologists mostly) and dentists. Then there’s the nurses and social workers and psychologists. Even family members like Michael Earle of Ouray Gardens who grows and makes hemp based CBD oil. (His website here) I’ve been talking talking, listening listening. I’ve also had a lot of support from Mary Ann, Jack Rees, and many willing friends and family for helping me weed it all out.
I had to make the decision about where to go for treatment. I truly felt I would get the same level of care at memorial Sloan Kettering or Hackensack University Medical. The choice was between two systems: Sloan Kettering is more like a University and Hackensack more like a college. I met really good people and really good doctors and nurses in both places and chose to go to Sloan’s Montvale, New Jersey location. It’s a little further but has some other perks.
i still have some trepidation about the treatment. I’m an over communicator and realize there are limitations to all the things you are able to take in. I’ve been aware of this malady and it’s attendant body of knowledge for a few months. Most of the people working in this have been educating themselves for years. In short I trust these people to do what they have been training to do. And I plan to have a miraculous recovery!
I have some anxiety but am very optimistic about what’s ahead. People who’ve met me see me as healthy and capable. So klink a glass and say a prayer! I sincerely hope my cancer and it’s treatment are as predictable as an accountant in Ohio. Smooth sailing ahead!
Joana Vasconcelas
Cancer Dream
I did have a dream that I didn’t record. Not sure which day it was. It was the first “cancer” dream that I had where I saw it, confronted it as a player.
The body processed by history, memory, institutions.
I was viewing, walking along side of, traversing a large scale site, it seemed industrial a plant. There was some implication that I was searching for my studio. There were 2 or 3 other people that appeared as the coroner of the building opened up. It was a 3 story building in height but no floors. It stretched back in a vast space. and there were discrete cells. It felt clearly even in the dream like a metaphor for the body. The three people I was traversing with, maybe including Mary Ann too were kind of being lifted down into an area. The area was one of these cells clearly a bit corrupt. There was a stench even though in the dream I felt nothing. I was really more afraid of a stench. I looked upon it it was a dense stacking of manufactured gridded squares but they were offset one upon another. (writing now it reminds me of Kafka’s Penal Colony) They were laid in with grime and filth but it was organic not synthetic and it was swarming with flies and insects and creatures. It was somewhat contained and set off to the side. But as we continued to traverse it gave way to a transition in the building and there was some other putrid material force smeared and become like a creature. I had the sense that it was disgusting and that people were living there, or how could they live there and sleep there. and this smudging creosote material force wolf gave way to some people, one’s back smeared with it. At first I thought I would see them and be disgusted but they were waking up, coming clean.
Images from Kaflka of the Penal Colony, of the harvester he describes therein resonate. Also from The Metamorphosis. These are two stories I loved in college. The Penal Colony continues to resonate especially when one imagines the machine that will sculpt my tumors with radiation.
Oncos
Onkos Greek Theatre Masks. The originals were made of linen, these are stone representations.
The Greeks used an evocative word to describe tumors, onkos, meaning "mass" or "burden." The word was more prescient than they might have imagined. Cancer is indeed the load built into our genome, the leaden counterweight to our aspirations for immortality. But if one looks back even further behind the Greek to the ancestral Indo-European language, the etymology of the word onkos changes. Onkos arises from the ancient word nek. And nek, unlike the static onkos, is the active form of the word load. It means to carry, to move the burden from one place to the next, to bear something across a long distance and bring it to a new place. It is an image that captures not just the cancer cell's capacity to travel — metastasis — but also Atossa's journey, the long arc of scientific discovery — and embedded in that journey, the animus, so inextricably human, to outwit, to outlive and survive.
From Emperor Of All Maladies Siddartha Mukerjee
Diary March 11
General sense of the impossibility of conceiving how difficult this is going to be. Like The Physical Impossibility of Death in the Mind of Someone Living - Damian Hirst
OMG time is shifting. And yet not at all. Long periods between dr’s appointments with too much to think about.
Organized all the stuff at school. I already Let important people know what’s coming.
Meeting Dr. on Monday to discuss surgery
Meeting the memorial Sloan Kettering team on Thursday
Talked with Maria Bell, was pretty straight about how tough it going to be
Caught up with Robert Gero
Diary Saturday, February 27
First entry. The self consciousness of writing a diary is always daunting. It’s benefits clearly outweigh the self doubt of low self esteem. I’m especially sure it’s important to start keeping notes on what happens here and why.
The thing that stands out the clearest is Dr M’s cavalier attitude when I asked him about the lumps in my neck. And he told me: “nothing to worry about, want to feel mine?” He told me something else about the lymph glands getting hard from age and not functioning as well. He asked if it hurt and I said a little, he said good because cancerous cells don’t hurt. Or something like that.
As this unfolds, I’m most frustrated by this. That was years ago, certainly during the Spring of 2016. I don’t want to sue him, but somehow I want to express my frustration and disappointment to him.
