Category: backstory
Cancer Chat
This was the IM i had with one of my friends. It is amazing seeing an IM about getting cancer. This was pretty early on. Less than a week into the whole thing.
Three pix from Portland
Here are three pix from Portland I forgot to post.
Here is the SASTM tool that my Physical Therapist used to massage my scar. (No, its not a sex toy…) I asked if I could buy one. The set of 6 or 8 or so costs over $4000. Spendy little jobs. But they work well.
These are pictures of the Marquam Trail, the trail I walked on every evening in Portland. This trail runs right behind my parents house. You can’t really see any other houses from it. It is protected city land. By car and/or bicycle this is 5 minutes from downtown Portland (admittedly, it takes much longer to come back up the hill by bicycle.) Makes me wonder why I don’t live there.
Day 16 with the Oracle of Not Doing
Infusion was uneventful. Passed my blood test. Got the drugs. No major side effects.
I was pretty stressed yesterday and this morning. I got really anxious before Monday treatments because the side effects start again IF my liver function is within a normal range. I was really nervous my liver would be working too hard and I would not be given the drugs — I have a plane ticket out of here on Saturday morning, and now I know that I am going to be on that plane. Nice.
Today I spent the morning with LK. She has been here since Thursday, and took part in the EPIC pizza party and hike. Today was a little bit of solo time with her. I met her cousin, and she told me stories about her family.
Early on in my diagnosis I spoke to LK on the phone for a long time. She kept saying “so M, you realize you are really going to have to change how much you can do, and you are going to have to say no, and not do things.” And I said something like “yes, yes, just after I finish this next project” or something like that. And she repeated herself a little more insistently. And then she offered to say no for me.
The deal was I would either email her to ask if I could do something, and she would tell me “No.” Or I would simply know that she would say no, and say no myself and then tell her. So here is our email exchange. She became The Oracle, and I became the Supplicant. NOTE: This was all written before the positive result from the lymph node surgery and the second major surgery.
Dear supplicant,
The Oracle accepts your energetic shifts regarding your grant, your now-ex, and your mother, but she wonders about your priorities, given your decisions about how to compose this e-mail. The Oracle would appreciate less self-reflexivity in your tone, because really, she already knows.
When it comes to mothers, there are no mistakes.
Perhaps your mother would like to sew you something to protect your calf from new york city, brooklyn, car insurance, and other contributing factors. It could also have reflective tape, and maybe a family photo tucked inside. The Oracle senses that your mother might not be sure how the pinstripe suit will help you with your skin cancer. Is the fabric supposed to shield you from the sun while you are riding your bicycle? Are you going to grow your sideburns long and buy a big black hat?
The Oracle is considering visiting Portland at Christmas. Would the supplicant join her on this path? The Oracle likes your parents, and is nearly envious of their ability to engage intellectually with a variety of topics. Oracles cannot, of course, be envious, but if they could be, she would be. The Oracle is also curious about their house and how the kitchen looks now. Although I sense its quiet, pulsing perfection, the tactile reality of opening the fridge would give the Oracle great pleasure.
The Oracle doesn’t really care if you apply for that grant, because many of her fellow priestesses are approaching 50 years old and have applied for that grant for the first time. The Oracle considers SL to be very Wise in his proclamation that there will be time for things like this later. The Oracle will make psychic contact with SL and invite him to join the circle of healing currently in place, held together by an infinite number of people and animals, most of whom you do not know, all of whom wish only for wholeness, smooth scars, and neat incisions.
The Oracle loves you. Take five deep breaths, shut your eyes, and imagine your parents’ refrigerator. Then imagine opening the fridge and being one with its bright, shiny light, sinking into its sterile, nurturing shelves and merging with the salad greens until you feel washed, spun, crisp, and good enough for your mom to present in her favorite bowl.
yours in bliss
LK
On Mar 8, 2008, at 8:09 PM, m wrote:
> Dear Oracle,
>
> I have forgotten many of the things i have not done.
>
> You could say this was a good thing: to forget the things which you decline. Mostly it was because I am strongly remembering three things I decided not to do, two of which were hard but good to do, and struck hard at my spirit, and the last of which was something I should not have said no to.
>
> I did not apply for a big grant.
>
> This made me feel like my illness and my resolutions surrounding it were finally, actually impacting on my so-called life. The fact of the matter is that my CV is not my life. I know, oh Oracle, that I must repeat this many times. Also, another fact of the matter is those things are such crapshoots, though I do feel like I had a better shot than in previous years, and supposedly getting into final rounds is good just by itself and often leads to other invitations. Yet another fact of the matter was that I didn’t really have a project that would work for them anyway. SL reminded me that we aim for long so-called careers, and will be around and alive for the next round in three years.
>
> I did not succumb to the relationship-games started by the woman I was dating
>
> Which is to say: we broke up. She started a fight over my defining boundaries.  I insisted that my boundaries were important. She said that it was not okay with her the way I was “distanced.” I think she was bluffing, and wanted me to give in to her and come running back.  She thought that I was going to say ‘all right, for you, just this once’ or something. But i did not. This caused her to cry and cry. This was exhausting.
>
> This is overly simplified, as the Oracle does not need the details, but rather the universal truths. The only detail the Oracle might need to know was that the fight she started was over whether I should sort through her automobile registration and insurance papers to make sure they were in order. She made it sound like she had spent most of her time ruminating over this seemingly insignificant detail since it had happened five days earlier. Needless to say, it was an inappropriate request to make of someone you have been dating for a couple of months on weekends. And so I said no. And then when she started relationship-games, I also said no.
>
> I also said no to my my mothers repeated requests to help-me-out-in-my-time-of-need. This was a mistake.
>
> I repeatedly explained to her that there was nothing she could do. She could not fly here and come take care of me; it would just be more difficult for me, as I would feel compelled to take care of her and she would get in the way of my daily life, which has to continue in some form or another. I turned down her request to send me money to pay for… take out food… cab rides… etc. I told her I would take more cabs, and that I could pay for it. I told her that take out makes me feel like shit. This is true. She just got more anxious. So today I told my mother she could help in whatever way she wanted.
>
> But Oracle, I arrived at an even better way for my mother to feel like she is involved with me and helping-me-out-in-my-time-of-need. I invited her to make a project with me. I want to make a pinstripe suit with reflective stripes. She sews. She is going to do some looking and talking to people. I made a wiki page for the project, made her an account, and invited her to post her research the wiki. Nevermind that in a spurt of research after I got off the phone, I found someone in the UK who has done it, and patented his process. It is the process of sharing with her that matters, right?
>
> your supplicant
>
> m
>
>
>
> On Mar 6, 2008, at 2:28 PM, LK wrote:
>
>> hon, the oracle has been so slack. I’m sorry. look for her feedback soon!
>>
>>
>>
>>
>>
>> On Mar 1, 2008 at 1:02 PM, m wrote:
>>
>>>
>>> Dear Oracle,
>>>
>>> This week i had to do things I had previously said yes to, and could not say no to.
>>>
>>> The planets were already spinning.
>>>
>>> When my wounds heal, I will pretend to join a gym so I can use their sauna.
>>>
>>> I will perform the breathing exercise as soon as my cleaning lady leaves.
>>>
>>> This week I asked for help.
>>>
>>> I asked someone to come clean my apartment (and paid them).
>>>
>>> I asked someone to rub my back (and paid them).
>>>
>>> I asked someone to rub my body and touch me gently (I did not pay them, they are my regular intimate)
>>>
>>> I asked several people to spend time with me, for lunch, for dinner, just to be in the same space
>>>
>>> I asked several people to accompany me to my doctor’s appointments, and wait for me until they were over.
>>>
>>> I asked my friends to send me funny things from the Internet because laughing makes me feel good.
>>>
>>> I did say no
>>>
>>> I said no to someone else’s intern who wanted me to hold their hand through a software installation
>>>
>>> I said no to three people who wanted help building websites
>>>
>>> I said no to a meeting I did not have to be at
>>>
>>> your learning supplicant,
>>>
>>> m
>>>
>>>
>>>
>>>
>>>
>>>
>>>
>>> On Mar 1, 2008, at 2:12 AM, LK wrote:
>>>
>>>> Dear Supplicant,
>>>>
>>>> The oracle requests that you perform two exercises. One involves breathing through your nose one nostril at a time. Hold the other one shut. breathe in, change nostrils, then breath out and in again. Change.
>>>>
>>>> The other involves locating a sauna in your neighborhood and sitting in it. You might have to pretend to join a gym. It’s probably better if you wait for your leg wound to heal somewhat first. The oracle has heard good things about this place, which while not quite in your neighborhood, feels like a resonant harmony with your current state: http://www.russianturkishbaths.com/enter.html
>>>>
>>>> “being early” is an intense space to occupy. Be very careful. Be sure to look at a wide variety of colors, especially blues and purples, whenever you’re early.
>>>>
>>>> yours in bliss,
>>>>
>>>> LK
>>>>
>>>>
>>>>
>>>> On Feb 25, 2008, at 7:47 PM, m wrote:
>>>>
>>>>> Dear Oracle,
>>>>>
>>>>> I pull at my spinning planets to slow them down:
>>>>>
>>>>> Today I informed a colleague that I would not be able to be a guest lecturer in her class, as previously arranged.
>>>>>
>>>>> Today I told a client I had a health issue and would not be able to deal with their website issues at my usual speed. (And then delegated it to my assistant.)
>>>>>
>>>>> Today I am going to be early.
>>>>>
>>>>> in supplication and heavy-yoga-breathing
>>>>>
>>>>> m
>>>>>
>>>>>
>>>>> On Feb 25, 2008, at 10:41 PM, LK wrote:
>>>>>
>>>>>> Dear Supplicant,
>>>>>>
>>>>>> The oracle requests that you send data re future activities so that she might better channel your unresolved energies.
>>>>>>
>>>>>> Presenting successful resolutions to the oracle only effects currently spinning planets at their current spin rate.
>>>>>>
>>>>>> Continue with the prostrations, as directed.
>>>>>>
>>>>>> Yours in bliss,
>>>>>>
>>>>>> LK
>>>>>>
>>>>>> On Feb 24, 2008, at 4:53 PM, m wrote:
>>>>>>
>>>>>>> Oh Guru of Calm,
>>>>>>>
>>>>>>> Oh High Priestess of Doing-Nothing-Ness
>>>>>>>
>>>>>>> I report these things which I am not doing:
>>>>>>>
>>>>>>> I did not go to the big event at the studio on Saturday, even though everyone else was there.
>>>>>>>
>>>>>>> I am not doing the alumni interview. I contacted the Alumni chair, and told him i had an emergency and could not do it. His problem now.
>>>>>>>
>>>>>>> I am not going in to school for the applicants job talk on tuesday. Emailed in, and told them I had a medical procedure on monday.
>>>>>>>
>>>>>>> I am not going in to the studio on Tuesday, even though I dont have to go in to school.
>>>>>>>
>>>>>>> I turned down an interview for a exhibition catalogue. They can reprint something i already did. Or not. That is enough.
>>>>>>>
>>>>>>> Your supplicant initiate
>>>>>>>
>>>>>>> m
>>>>>>
>>>>>>
>>>>>>
>>>>>>
>>>>>>
>>>>>
>>>>
>>>>
>>>>
>>>>
>>>>
>>>
>>
>
Some of the ways people responded to me telling them about my cancer
I have observed that there are generally four ways in which people responded to learning about my cancer. There are variations, and exceptions, and etc. But these are some generalizations that seem to hold true most of the time.
1. What their mother told them to say.
which goes something like this: “I’m so sorry to hear about your diagnosis. If there is anything I can do, just let me know.” Sometimes it includes a line about how their mother, uncle, friend has also survived some kind of cancer, though usually people tell you that in person.
I don’t hold it against them; it is a scary topic, and they are clearly scared. they would rather that it had not entered into their circle of life, but having entered they have to acknowledge it.
People who say what their mother told them to say almost never visit, almost never offer any real help, and never really talk about it again.
2. Honest speechlessness
The most honest responses have been the ones where people say that they don’t know what to say. Something like this: “i don’t know what to say. i’ve been thinking about you a lot this weekend, and i have no idea how to go about this, or what to say so i dont sound insensitive or cliche or weird. so i just wanted to tell you, “i’ve been thinking about you a lot this weekend”
3. The Medical Professional
This has only happened once or twice, but it comes exclusively from trained medical professionals, and it goes something like this: “Your experience with this disease is unique, and only you can know what this period of suffering has been like, but I wanted to reach out to you to express my respect and support for you.”
4. The Pragmatist
The pragmatist says one thing: “When can I come over and what can I bring.”
Appointments Galore
My Dermatologist made me an appointment with a MOHS surgeon that following Monday. SM basically insisted that she come with me. I thought I didn’t need it, but boy was I glad she was there.
This whole period was full of accelerated learning, and radical changes in my own self image. From fit to sick.
February 25th, 2008
I went to the dr just now. Just consultation. I go back thurs for a Narrow Margin Excision, where he will remove the remaining bits of The growth. Next Tuesday I go up to Columbia to a different Dr, for a consultation about next steps. My understanding is he will probably recommend a Wide Margin Excision and a Sentinel Lymph Node biopsy. They will both happen in the same procedure. Not sure when that will happen.
Will know more next Tuesday. In the meantime, I’m feeling okay. The new info doesn’t really calm me down that much, but it doesn’t freak me out further.
The other thing I learned today is that Lymph Node biopsy is a euphemism for extraction. Because they are so small, they basically have to remove it to get a sample. They used to remove all of them, but b/c of some side effects, they now only remove the sentinel node (the first one)
The key is still whether it has spread to the lymph nodes. The dr said that all things considered, he doesn’t expect it there, but he thinks the dr at Columbia will recommend checking just to be sure.
First Hours
I’m trying to piece together what happened those first hours after I found out. I’m going through my outbox, and saw this email to
Feb 22, 2008
i think i’m okay, but i kinda dont want to be alone tonight.
i haven’t cried, but feel it coming on.
i have a stupid alumni interview at 6pm. i’ll keep it short. i’ve held it together so far, and will prob keep it up through the interview.
when is the yoga class tonight? the 8pm one? i might like to do that, to distract me and beat the shit out of me.
m
Needless to say, I didn’t make it to yoga. I didn’t make it to the alumni interview. I ended up walking down 21st st calling my brother in tears asking him to find the phone number for the coffee shop I was going to meet this young college applicant for this alumni interview. I remember calling and begging the too-cool-for-school barrista to just look for a yound woman arriving at 6pm like she was there for an interview. I think I said “I have had an emergency.” I hadn’t graduated to “medical emergency” yet, nor from there to “I just found out I have cancer.”
K was the first to call in response to my emails out. She was doing a good job of remaining calm, though the layers of meaning were huge for her.
- I had just learned that her mother died of cancer when she was 7 or 8 (I forget)
- she had just gotten off the phone with the director of the melanoma foundation of New England; she was writing an article on Melanoma for one of the womens’ magazines she freelances for. She quickly quoted to me the stats that Melanoma is actually the most common cancer for ages 25-40. So it was for naught that I had been feeling my balls at my dr’s behest for all these years.
- She has lost people/partners before, and has a real thing about it.
But she remained calm, and told me to leave the studio. Leave the studio. I was at the point where I could not make any decisions. So I listened. I left the studio. And went to S&E’s apartment. I don’t remember what happened there, but I probably cried a lot. I really can’t remember.
Chemo day 5, end of week 1
I made it through the first week.
I’m tired, and feverish, and really irritable. My Parents are trying to figure out what I want, and how to help me, and how to make me happier, but I just want to be left alone. I tell them that, but they aren’t listening.
Of course, I could not make it through this without them. At all. But I also wish I had some more distance. I need to process this stuff in my head, and I need quiet and alone time. And my mom is being Jewish-mother on me. Super well intentioned, but won’t leave me alone sometimes.
I went through a big debate about whether to come home. I grew up here, but I don’t live in Portland, I live in Brooklyn. But Brooklyn is loud, and my hospital (Columbia Presbyterian) is all the way at the north end of Manhattan. And my aparment is tiny. And it is so hot in the summer. As I put it in an email:
April 29, 2008
i start the interferon drug treatment roughly June 1st. i’m trying to decide whether i should stay in nyc for this, or go back to portland. i get a high dose IV for 1 month, followed by 11 months of self administered low dose. toxicity is high, and hits hardest in the first two weeks. not sure whether it would be better to be around friends, my brother, and my mom (who would come out), though with a harder time of getting to the hospital, or to be with my parents, their dogs, and one or two friends in portland, though with easier access to the hospital. i also feel like being able to go into the studio if only for a few hours, a few days a week, will have grounding effect on me - its because of the people in the lab more than the actual working (i can do that from home, or from portland.) also the airplane flight will be hard, and is not recommended post-surgery b/c of swelling issues. i’m honestly torn, and unsure. though i have some time to figure that out.
But I decided to go home:
May 24th, 2008
i made the decision to go to PDX to have the Interferon. the range of reactions to the drug vary from 4 weeks of 103 degree fever, to a bad fever for the first two weeks. it is hard to not know which will happen, but i would rather be in PDX feeling better than I thought, than alone here in NYC with a 103 degree fever for four weeks. and if i do have 4 weeks of high fever, i would def rather be surrounded by quiet, trees, dogs and parents.
the dr in PDX is going to accept my insurance’s out of network pay rate. i have substantial out of network deductible, which sucks, but after that, they’ll clear it all fine. it is worth it to be in portland, i think.
My trip to PDX was delayed because the incision is healing slower than expected. It is quite long, and they had to go quite deep, and it is right at the crease of my leg, so it is agitated every time i move my hip joint. fun…
i have a plane ticket leaving June 9th, returning July 19th. my first appointment is june 11th. that is a wednesday. i don’t think i will be getting the Interferon that day. i might start later that week, or i may start that monday. not sure, and prob wont know until i have that first meeting.
I guess it has been so long since I have spent more than a week with them that I underestimated the parental factor. I did have some terms (in the next post), but I forgot how my parents can be. It reminds me of when I went on a trip with my father to visit colleges in New England. After every campus tour, or class visit he would ask me what I thought. And I would say something like “I don’t know,” which really meant “I don’t know yet because I’m still thinking about it.” But I hadn’t learned that about myself yet. But he kept asking. And at some point I cracked and I think I yelled at him, and then didn’t say anything for 24hrs, or something. Maybe he got the point, but i doubt it: its not like I was the best communicator then. I think he was pretty pissed too: flying me across the country and driving me around, and I wouldn’t even tell him what I thought of these things? The problem was *I* didn’t know what I thought of them. I had to process. I needed time to understand my experience. Same here, kinda.
Diagnosis: Invasive Malignant Melanoma
I am writing this to help me remember what has happened to me. One of the most amazing things about trauma is its ability to erase memory. I’m sure it is a Darwinian survival mechanism. If you dwell too much on terrible things that have been done to you, you will never be whole again.
But these four months have changed so much about me that if I do not reckon with what has happened to me I might not understand whom I have become
—
On February 22nd, 2008 I received my diagnosis of Invasive Malignant Melanoma, the bad kind of skin cancer.
It was snowing out.
I left my dermatologist and trudged through the greying snow berms of TriBeCa to the offices of a fancy non-for-profit art organization for a meeting about their website. They have a big website that had a lot of problems, and they wanted my web design collaborator and I to redo it. Or at least tell them how we would, and how much it would cost.
Straight out of the drs appt I walked into this business meeting for the largest site I had ever bid on, and totally rocked the meeting. I was totally on point. I answered every question the right way. I dropped all the right references. Made them totally reassured about the right things. And they had no qualms when we told them it was going to cost $100-125K for their site redesign.
Two weeks later we found out the director wanted us to do it, but their board wanted to go w/ some other more mainstream “firm.” While it was dissapointing, it was a blessing in disguise. Because I had Melanoma.
So despite my diagnosis, I held it together. I rode the train back uptown with my collaborator, got off at the same stop, but turned in different directions, as he went back to his appartment, and I went to the studio.
I held it together until I arrived at the studio. then i fell apart.
I walked in, stunned, and SL immediately asked me what happened. “Was Dallas that bad?” referring to a conference I had been at the previous three days. And I told him. He was the first person I told. I think I said “I don’t even know how to say this… I was just told I have Melanoma.” He made some perfect jokes about cancer that I forget – he has a great way of using humor as a healing mechanism. And told me that his wife’s mother was diagnosed with Melanoma twenty years ago, and is still alive and well.
I sat down and wrote this email to my parents, my brother S, my roommate P, my good friend X and the woman I was seeing K:
i’ve been having a rly shitty 36hrs.
my flight was cancelled out of dallas. i had to sprint through the airport in houston. this time i made the flight, and when i sat down in my seat, the phone rang. it was my dermatologist’s assistant asking me to come in as soon as possible to speak w/ the derm about the lab results from the supposed blood blister he removed on my right calf. i asked him to specify, but he said that the dr wanted to speak to me in person.
so i spent much of the flight having horrific visions of me as a chemo patient. at the same time knowing that was really fatalistic for skin cancer. but also knowing that i am not stupid, and that the results were most likely skin cancer.
and then when i got off the plane, i got a msg from my lawyer saying that the condo plan was going to be approved in the next day or so. He had been trading phone calls with the atty gnrl to slow it down two or three days so as to make it go past march 1st, but that was not going to be possible. to remind, march 1st is the day after which i am on a new lease in the apt w/o J on it. this is significant, b/c it reduces her claim to a right to purchase the apt.
great, right? double whammy. spent the evening in a daze. not sure whether to email about everything, or not. whether to talk about the fear of cancer, or not…
yeah, so went into the dr today. yeah, so it was a malignant melanoma. “i have cancer.” weird, right?
it was “Clarks Level 3” of 5. The depth was 1.88mm. Less than 1mm lymph node biopsy is not needed. More than 3mm, and you go straight to chemo. There was no ulceration, which means that it didn’t break the upper reaches of the skin, or something like that, which it has to do to spread to the lymph nodes. So, it could be worse, could be better.
i have apt on monday w/ melanoma specialist who will excise a moderate sized chunk of my right calf, and send me to a different specialist who will biopsy my lymph nodes. if the sentinel nodes (back of knee, groin) are clear, then i watch carefully for two years and am a new man. if they are not clear, then there is “other stuff.”
at one point i asked him whether i was going to die. it is weird to ask that question. he said that people do die from this, but that it was unlikely in my case, and that regardless it was too soon to speak about percentages and outcomes. i have to wait for results from lymph node biopsy.
so here i am at the studio.
i just arrived.
im ready to go home.
i haven’t cried yet, but it will happen. still a little shell shocked.
m