Medicinal Marriage
CHAPTER 3
The doctors had a plan–a year of chemo and Herceptin because her2 (human epidermal growth factor receptor 2) positive is bad.
That’s when we got married. Marriage seemed doable and better than cancer. It was fun, empowering.
My relationship absolutely helped me through cancer with peace and ease. I’m grateful. I can say that now.
When she left the day after I finished treatment, I was not so generous.
As I go through my photos to create this story, I can recall good times. I had a lot of fun.
Sometimes during the chemo we would laugh, especially in that big chemo room with all the other chemo folks. I’d put a blanket over my head so as not to disturb the others.
For the longest time, I told myself if I knew she was going to leave, I wish she never came. I would rather have gone through it myself with friends, a support system that wouldn’t break my heart. When she left, I had to deal with the cancer and the break up.
As I gay person I never thought I’d get married, so getting divorced was a horror more isolating than I could have imagined. Today I can say my divorce was worse than my cancer, that’s my experience.
Everything fell apart, but I’m better now. Back to cancer.
I found out I had cancer from a random mammogram.
I had a persistent cold and cough; so, I went to see my doctor. While waiting, I was offered a mammogram. That’s it. I had no symptoms, wasn’t sick, didn’t feel a lump. It was just routine,
WHICH IS WHY ROUTINE IS IMPORTANT! GET THE BREASTS CHECKED. GET ULTRASOUNDS TOO. FIND OUT EARLY IF SOMETHING AIN'T RIGHT.
It’s the best shot, in my opinion.
And if you find out you have cancer, it’s okay. You will deal with it, like you deal with everything. You are a warrior and you will win. Eventually, of course, everyone dies. This may not be your time.
Focus on what you can do, which is: Find out what the fuck the doctors are talking about. Look up the words. Ask questions. Ask for options.
Tell your social media followers–tastefully. You might find people who went through the same thing, and they have resources. You will get through–there is an entire medical system designed to scoop you up and do things to you that you don’t understand.
Ask more questions.
Here’s the truth you must remember: Doctors are human and scientific knowledge is limited. They make vast generalizations. Yet, every person is different. Every cancer is different. Everyone responds to drugs differently. RADIATION. That is some powerful stuff. Please ask what it will do to you today, tomorrow, the next day.
Cancer is not one-size-fits-all, but that is how the medical system is designed. You got this. They do that.
Who says that’s best? That’s on you to decide. You make choices the whole way. Each moment is a choice.
AND, OF COURSE: This all costs money, so much money. Even with insurance, I paid tens of thousands out of pocket. I could show you some bills. I am lucky; I had savings. I could pay. Maybe that wasn’t lucky. Who knows? It’s in the past now.
I chose the mastectomy. I chose no radiation. No lumpectomy. To have sentinel nodes taken out. To have my fiancée come in from England. To have my friend come down from Portland. To move to the desert. To get Emu oil and rub it on my chest regularly, which made me as soft and supple as a newborn.
I also chose to get a port in my chest. I figured if I needed to do chemo I’d rather get plugged in than watch them try to stick me every time.
To tell you the truth, the chemo part is a bit of a blur...I had to start steroids, regular blood tests, and other drugs.
It wasn’t too bad. At least, it didn’t seem like it at the time. There were upsides like the temporary red handicapped placard.
I got to cut my hair short, which I always wanted to do but never did because I was afraid I would no longer blend in. Long hair and boobs gave me a shield of femininity, one I had half-sacrificed already. I wasn’t sure I wanted the shield anymore. The truth is, to pass in the normal world, having a shield of femininity helps. It just does. I’m too tired to try to explain it to you. Trust me.
The haircut and the lack of boobs started to feel like a joy and renaissance even though this chemo stuff was gnarly.
I started to take photos on my own. I started to play. I could play the guitar with astonishing ease. I began to see a new me, the me I’d been looking for in the mirror but literally hadn’t seen since I was eight.
The first summer of COVID was a weird time.
I was working on a documentary I shot among young queer activists in the late eighties in New York City and living in a place so hot that my cancer gave me rashes on my feet and hands. I was puffy and kinda bald. The high temperatures and bright, bright, bright sun made me literally sick. I couldn’t regulate my body temperature. Apparently body temperature regulation is one of those things that can happen after breast cancer but isn’t studied much because it happens to womn, who mention it and are dismissed...
I was staying in the air conditioning and obsessing about my film, and COVID–what the fuck is that? Masking–what kind of mask am I supposed to wear?
Remember homemade masks? Homemade masks!
The stores were out of toilet paper.
My new wife was six thousand miles from her home, her children, and grandchildren–freaking out about COVID for them. She was suffering in her way and I was suffering in mine.
I was no longer having toast and coffee in the morning. I wasn’t craving any food at all, a first in my long life, I assure you. Food was my friend. I had weight fluctuations from 100 pounds when I had anorexia to 180 when I had cancer. Food had lost its hold on me completely...a harbinger of my new life.
Years later I still have no appetite. Food is a must, not a craving. Goodbye food. That’s what happened after cancer and divorce.
I feel so much better.
If you had to live in lockdown, the desert was divine–so much beauty and our only neighbor was the wilderness around us.
A great joy and daily routine was watching the baby birds living above the light fixture under the deck, hatch, eat, poop, grow, and learn to fly.
But COVID made everyone bonkers beginning that summer of 2020...something in the air.
My wife was miserable. I suggested she go back to her country and visit her family. She agreed. We agreed. It was to be a six week trip leaving after I finished chemo.
As the summer wore on and the air got hotter and hotter, there were fires nearby and then three…three friends died in one month. An ex-girlfriend and someone I’d known since my twenties and, of course, Kathy.
My dear friend Kathy, from my very first job after college at MTV. I was devastated.
Kathy found out she had brain cancer.
We hadn’t been in touch for a while. I had seen her five years before and we took pictures of ourselves in our MTV jackets. She called me to tell me she had brain cancer and asked me to be the one to update our MTV friends and colleagues on her cancer journey.
A short time after this dialogue began, interestingly, I found out I had breast cancer.
We laughed and cried together almost weekly until I called her one day to ask if she got the painting my wife made of that photo from back in the day.
Kathy picked up and said she was going to the hospital, but would call me back......and never did.
I was devastated.
My mother had died in February, right before COVID lockdown. Now three dear friends were gone.
I was finishing cancer treatment after a year of chemo, and steroids, and all that crap.
I started to panic. Panic is putting it mildly. I finished treatment in August 2020.
My wife never came back.
I cried every day until February of 2021. Obviously, I needed it.
This is Chapter Three of a 4-part series sharing Allegra’s breast cancer journey and Aesthetic Flat Closure experience this month, during Breast Cancer Survivors Month. Check back on our blog next week for the final part of her story.
photo by @t.vanparys
ALLEGRA
CONTRIBUTOR
Allegra is a Peabody Award winning documentary filmmaker and has traveled the world to see first-hand who people are, how they live and what we all want - to find peace. To be ourselves. Love is love.
Opinions expressed by the identified author in this blog post are their own and may not represent the views of the Keep A Breast Foundation or its management. Information found on the KAB website is for educational and informational purposes only and does not constitute medical advice. You are advised to consult a medical professional or healthcare provider if you are seeking medical advice, diagnoses, or treatment.
Read more: Boobs Not Required
*”Womn” definition: Womn is the term I identify with because it feels right to me. I know it's not a "real" word but it's a real feeling and my streamlined way of expressing my gender.