I shared the following at the 2011 Women’s Health Conference Story Collider Show at St Francis College on Saturday April 3rd, 2011.
On February 13, 2007 after a five year fight with ovarian cancer, my partner Heather MacAllister almost died of ovarian cancer.
My partner was a burlesque queen and a queen in general;
she started Big Burlesque and the Fat Bottom Revue, the world’s first plus sized erotic performance troupe;
She posed naked for Leonard Nimoy.
She was a person who knew what she wanted.
I said she almost died of ovarian cancer, not because she she almost died, but because it was almost due to ovarian cancer.
At the time, we were living in Portland Oregon, where physician assisted suicide is legal. She was in her own words, “tired and done” so after doing a lot of paperwork (it’s America, if you want to kill yourself, it takes a whole lot of paperwork) she grabbed hold of dignity with both hands and used the law to end her own life.
The way it’s done is you take 90 pills of Seconal. You are supposed to open them into water or applesauce, but Heather was insistent: “the last taste in my mouth is not going to be applesauce. I want them in chocolate pudding.”
She said her goodbyes; she ate the pudding and she died.
It certainly wouldn’t have been my choice but it was definitely hers.
That morning when she woke up, she had looked at me with a funny expression.
“Oh you’re still here”
“Thanks a lot.”
“I mean, it just means I’m not dead yet.”
I responded with the four words that Heather had taught me for just such occasions.
I’M SORRY, THAT SUCKS
A year earlier when she had gotten bad news and I stumbled over my own words, trying to make things better.she held up her hand “Boi when things are this bad there are only two things you can say: ‘I’m sorry’ and ‘that sucks.’”
You know what, you should try it, all together. No problem solving. No pretending to understand. You don’t understand. Just say it. ‘I’m sorry. That sucks’. Really, you can try it next time a friend is going through a hard time especially if it’s something that you can’t fix, haven’t been through yourself or don’t understand.
I’m sorry. That sucks.
I guess death had become such a part of life for us that we talked about it freely.
The previous fall, I called her from the grocery store and asked if I could bring her anything. She had been experiencing unremitting nausea and vomiting for six weeks. She spat back “yeah, pick me up a quarter pound of the will to live.” I said “oh, I’m at Trader Joe’s and you know how they are. They only had organic and now they’re all out.” She immediately replied “damn, I had a coupon too.”
Another time we were at her favorite Whole Foods when she left for another aisle without telling me. When she returned I was crying.
“I…I couldn’t find you” I explained in response to her expression of complete consternation.
I imagined she was about to say “uh, I hate your parents,” but she took a longer look at my face. “Were you thinking that one day you’ll come here and you really won’t be able to find me?” I nodded, quietly sobbing now.
She thought for a moment. “When I’m dead you won’t be at the natural foods store buying organic produce. You’ll be back at Safeway picking up $1.99 hot dogs.” She took my hand and we finished shopping.
Once it became clear that the chemo she was on was not giving her any hope of recovery and was instead merely making her miserable, Heather decided to stop chemo and start hospice. We were so grateful for the hospice nurses, who made everything easier, but I think we confused them a little bit.
FUN AND GAMES WITH HOSPICE
On the afternoon they were coming to do intake, there had been a rare Portland snow and it was very wet. It was the kind of sticky white stuff that makes perfect snowballs.
Heather was outside smoking, I was attempting to shovel the sidewalk in front of our house with a broom. When I walked past our car, I scooped up a handful of snow.
Heather said “ I know you aren’t about to start a snowball fight.”
I countered with a question. “Um, am I?”
I was thinking furiously because I couldn’t figure out if it was an awesome idea or a horrible one.
I lobbed a test snowball in her general direction.
She responded by grabbing two huge handfuls of snow and putting them down the neck of my thermal, and when I tried to run away she pelted me with more snow, hastily grabbed from the roof of our car.
I ran across the street and threw snowballs at her from behind the safety of a neighbor’s SUV.
Just then, the hospice nurse drove up. We both adopted a very innocent demeanor.
I might have even whistled.
The hospice nurse said “Are you all…were you…I mean…was this? Are you guys having a snowball fight?”
Heather sniffed. “ A person’s got a little stage four ovarian cancer and all of sudden she’s not supposed to be having snowball fights? What’s it gonna do, kill me”
The hospice nurse, nodded and said “That is a very very good point.”
We all went inside and I took a moment to go downstairs and collect myself, but Heather and I couldn’t look at each other for the rest of the visit, because we would break into giggles.
Yeah, we did indeed confuse the hospice folks. For example, one of the most effective tension breakers in our house was me, doing the Snoopy Dance. It started originally as part of my stand up act. Because I went to a fundamentalist Christian high school that labeled dancing as “the devil’s work” I never learned how to dance socially, and so everything I knew about dancing I learned from watching the kids on Peanuts.
I started doing it for Heather when she needed cheering up and somehow―it seemed perfectly logical then but not quite as much in retrospect– it became a strip tease. Not really an erotic dance, because it was too dorky for that, but yeah, I took off all my clothes. When Heather’s sisters were visiting, she asked me to do the Snoopy Dance for them and I reminded her that it was a strip tease number. She shrugged: “You’re a comic, improvise”
So I did the Snoopy Dance for Heather’s sisters, incorporating various props from around the living room and not taking off any of my clothes. I was running out of moves when I hit upon around the idea of inserting a random scene from Cats halfway through. Since I’ve never seen Cats, I simply, um, improvised, making cat pawing motions and then, spying a Sharpie on the living room table, drew cat whiskers on my face. With a sharpie.
Once the Snoopy Dance was over, Heather went upstairs to take a nap. Somehow the conversation with her sisters turned to the subject of microwaving peeps. They had never seen the carnage that results when a peep is microwaved, which seemed impossible and even a bit sad to me, so I showed them. We became quite taken with the idea of microwaving various sugary treats and since it was just after Christmas the house was full of them. Soon we had a paper plate full of Ju Ju beans, a sour apple Now and Later, cherry jelly slices, and red hots in various states of melting.
40 minutes later as I was cleaning up the mess from our kitchen science experiments, the hospice nurse knocked on the door. Forgetting both the cat whiskers I had drawn on my face, and the fact that I held what must have looked like a painting pallet of melted junk food, I answered.
Heather had started on a central IV pump for pain medications that week, so I sat down with the hospice nurse to go over some of the details of flushing the pump, checking the tubes for patency, and administering meds. If she thought it strange to have a discussion with another nurse about the nursing procedures for end of life care with someone who had cat whiskers drawn on their face with a marker, she gave no outward indication that this was so.
Our last winter holidays together, on Christmas morning after we had opened our gifts and before I headed downstairs to begin cooking dinner for the gang we would be having over in the afternoon, Heather took my hand. looked at me and said “you know, most people would think I’m unlucky because I’m going to die before I turn 39. But I actually think I am lucky, few people in the world have been loved by someone the way I have been loved by you.”
I moved to New York a few months after Heather died, unable to live in the converted Hare Krishna temple that was our home, without her.
NYC is a perfect place to cry in peace. In Portland if you so much as shed a tear on public transportation, you’;; immediately be offered a kleenex…or a vegan cookie…or sliding scale energy work.
In NYC you’d have to carry a severed head to attract that kind of attention. Your own severed head…
They say time heals all wounds, which makes me want to punch whoever “they” are in the head.
But time, the support of good friends, and uninterrupted crying on the A train can work near miracles.
On April 4, 2009, I went on the first date with my current girlfriend. We accidentally went to a performance art piece about cancer.
I don’t know if I believe in the concept of falling in love, but something sure was happening. She made me laugh, she inspired me to be my better self. We fell in–as she said– nerd love and became a real true nerd unit. It felt like a miracle.
We are really really different. I grew up in a farming community in rural Wisconsin. She grew up in an Italian American enclave in Staten Island.
She thinks pasta is a comfort food, I think it’s something you eat when you don’t have any meat left in the house. My specialty dish, the one I impress dates with, is potroast.
She’s a vegetarian.
But–and I don’t know if I chose this consciously– Cheryl was a very healthy person. She has been sober for more than ten years, diligently eats well, worked out four days a week and has never smoked.
A year and a half after our first date, a year after we started calling ourselves girlfriends, on a Friday afternoon in late October, she called me. She was being treated by a allergist for shortness of breath.
She had diagnosed Cheryl with asthma but since all her allergy tests came back negative, she wanted to do a chest xray just to make sure. When I picked up the phone that November day, Cheryl said simply “Uh, I have this huge tumor in my chest. I have to go for a CT scan later tonight. They think I have Hodgkin’s”
We met later that night at the lab where she was to have the follow up CT scan. I held her hand and said “I’m sorry. This really sucks.”
The time between the first definitive cancer sign and the time treatment begins is like some kind of medical hazing. Cheryl had.bronchoscopies and cardiac tests, PET scans and CT scans, lung function tests and many many blood tests.
During the bone marrow biopsy, she was rolled on her side while the young female doctor dug for a marrow segment. I stroked Cheryl’s face. “It’s so hard, “ she said, “on a young person, your bones are still so strong.”
Cheryl turned to me when she left the room “this is like some kind of very weird three way”
I found that while Heather was sick I was the bunny, hopping back and forth, but with Cheryl, one of the way I dealt with the ineptness of the medical system and also, I am sure, my own intolerable feelings was by being a honey badger of a medical advocate.
When a receptionist insisted that we couldn’t possibly have a biopsy scheduled for the next day, even though the oncologist said he had put the order in the computer himself, I heard coming from my mouth ‘I don’t want to hear any excuses”
Like I had any power in that situation. Like I was Donald fucking Trump.
One afternoon as we walked away from yet another inept front line medical personnel, who we had to push into service, Cheryl mocked the voice of the 20-something reception “why is the fat one always angry.”
When we came home from her last testing appointment and chemo had been scheduled, I said “Okay we need to start telling people and get an online support group set up.”
“Wow,” she said “how do you know how to…”
She trailed off.
I sent out an email to my family telling them the bad news. My brother responded as only someone who has spent his entire life in the military could: “it would seem that one situation of this type would be more than sufficient.”
I’m only 42. This is my second partner with cancer. At what point do you think, holy shit, am I toxic? Is there something carcinogenic in my skin?
I do drink a lot of diet mountain dew.
Friends asked if I thought I could handle this. I’m not sure I was handling it. I mean, my emotions were like a ping pong ball in those early days, The more I tried to hide them from Cheryl, the harder it was on her. But it was her first time having cancer and she deserved as much support as I could give her..
What was the option? Eating my own poisoned chocolate pudding? Laying down in the gutter? That’s not an option. It’s NYC, you can just lay down in the gutter to die, someone will come along and poke you with a stick.
You know, much is made of the heroism of caregivers. And I suppose especially for the sandwich caregivers, caring for aged parents with young children still at home and for those of us who are isolated from our geographically nearby communities by our culture’s insistence on primacy of the nuclear family, there is no question. Of course, it is difficult.
But often, what is called heroism is actually pretty simple: 90 percent of it is getting up every day, doing what it is that is your responsibility to do, and not being an asshole.
Both Heather and Cheryl taught me a different kind of heroism.
Not just in gritting their teeth through the pain and indignities of treatment: hair loss, bone marrow biopsies, unending nausea and vomiting, but in still being present, still being open to me, to what I had to offer and even to my lack.
Cheryl could have, out of guilt, said “I can’t make you go through this” and decided to go it on her own.
And as hard as this has been, at least we have been going through it together. I can’t imagine what it would be like to be reading about it in her blog, negotiating it through face-book statuses.
Cheryl has been through almost six months of chemo. She has two treatments left and then another six weeks of radiation. She has suffering through harrowingly low white blood cells, bleomyocin induced lung damage and six months of a nutrapenic diet.
But the prognosis is very very good. Chances are, we will have been more years of holding hands, watching sunsets.
But just in case, I don’t allow any chocolate puddiing in the house. .
I told that story on Saturday evening. Cheryl was with me at the gig. By the next night Cheryl’s pulmonary symptoms from the bleomyocin toxicity had worsened to the point where she was admitted directly from the emergency room into the stepdown respiratory unit. We were told she had only days to live, but she lived almost three months. Our last date was at Beth Israel Medical Center, complete with flowers, candles and romantic poetry. Cheryl quipped “I guess this is like a very weird bed and breakfast.”
Sometimes when love makes least sense, when hope makes no sense, you choose both.