Support groups aren't for everyone, but finding even one other patient or survivor you can relate to can make all the difference in not feeling completely isolated.
Jen Sotham is a freelance journalist and screenwriter/director. She was working as a university professor in Busan, South Korea, where she lived for almost a decade, when she was diagnosed with metastatic melanoma in 2014. Still doing battle with the beast, Jen has since returned to New York, where she has been using her voice to share her story through film, essays and her blog, jenvscancer.wordpress.com
When I was diagnosed with metastatic melanoma and started undergoing treatment, a lot of people suggested that I check out some support groups. I'm not anti-support group by any means. In fact, I used to be a mental health counselor and would strongly recommend support groups to others in my circumstances. Still, I opted out. I signed on for weekly one-on-one psychotherapy and I am lucky enough to have a vast network of both close confidantes and sidelines cheerleaders. Because cancer is like the opposite of a rare disease, there were plenty of people within that vast network who could relate, on some level, to what I was going through. Unfortunately, most of the people I had known with stage 4 cancer were no longer around to discuss the kinds of thoughts and emotions that late-stage cancer breeds. In this, there was a profound sense of isolation... I just didn't realize it at the time.
About a month ago, my mom went to get a manicure. When she walked in, the salon owner, a long time friend and confidante, ushered her to a chair. "You!" she motioned to my mom, "...and you," she pointed to the woman seated next to her, "You two NEED to talk about your daughters"
Our moms quickly discovered that we were both 41 and graduated from neighboring high schools. We were both single. Both music lovers. Both well-traveled. Both diagnosed with cancer six years ago. Both with surgeries and treatments and brutal side effects and recurrences in our recent histories. Both carry the same gene mutation. The lowest common denominator was that we are both being treated by the same beloved oncologist. What I would give, as a writer, to have been a fly on the wall during that conversation.
Still reeling, my mom returned home and excitedly relayed the whole encounter. And when I say excitedly, I mean, with profound sympathy in her voice and shaking her head from side to side as she listed off the similarities. My cancer doppelganger's name was Betsy. My mom told me she had taken the mom's number, with the addendum that Betsy was scheduled for lung surgery in the next day or two. She would be recovering at her folks house, practically around the corner, in the weeks to come.
My mom, who is awesome about not pushing “support-y” things on me, tentatively asked if I thought I might contact Betsy.
"Oh yeah, mom. I'm definitely going to reach out." She smiled and nodded, proud in the same kind of way she has been when she's given me just the right birthday gift.
An hour later, I found myself scoping Betsy out on Facebook. I was sure her mom had already told her about meeting my mom... this was like extreme Jewish geography. I friended her and shot her a message, wished her well on her surgery and told her that, as soon as she was feeling up to it, I'd love to get together. Almost immediately, Betsy accepted my friend request and responded. She was just as eager to connect. After her surgery, we continued to message, exchanged phone numbers and started to hash out a plan. I found myself awaiting her messages almost in the same way I anticipated messages from a promising Tinder match.
As soon as her health allowed, we met for lunch at the same local sushi go-to of both of our families. We proceeded to order the exact same thing. The conversation flowed easily, a lot of sentences beginning with, "So my mom told me that..." It was here that a lot of our differences came to light. Where Betsy was a classically trained musician who loved the opera, I had followed the Grateful Dead and played guitar in a rock and roll band. Her singleness was the product of a divorce; mine was the result of my marriage to wanderlust. Betsy has been host to several brands of “the big C,” where melanoma has been my sole nemesis. But the number of similarities in both our upbringings and cancer journeys were uncanny. Good fodder for a “first date.”
The fact that cancer robbed both of us of the ability to make babies incited a reaching for tissues. It was really kind of nice not to have to verbally comfort each other, but just to exchange brief, validating eye contact that said, "Yup. I know." We shared our relationship histories and the conversation turned to dating. Dating as a forty-something is already hard enough, filled with baggage and disclaimers and ground-in habits. Having a stage 4 cancer diagnosis pretty much assigns us a deal-breaker. I mean, who the hell in their right mind would want to get emotionally involved with someone whose statistical life expectancy was two years? I wouldn't.
I had, in fact, gotten involved in a relationship during a period when I was without evidence of disease. Just four months later, a recurrence drove a wedge between us. And by wedge, I mean a wall which I built, and which we both ultimately found to be unclimbable. And here I am, single again, in treatment, and on the fence about whether or not to even bother at this point.
Betsy and I hashed out some of the questions dating with cancer forces you to ask yourself. If I do go on a date, do I just not
disclose the fact that I have cancer and wait to see if there's something actually there? Or do I not disclose it at all and just keep it casual? Or do I put it out there on the first date, and if he's ok with it, then he must be a keeper... even if I'm not that into him?
As we both finished our spicy tuna rolls, Betsy and I realized that we are in this very small, specific demographic. When Betsy was first diagnosed, she, unlike me, decided to give support groups a whirl. Because she was young-ish and single, she was placed in a group of mostly twenty-somethings, to whom she had trouble relating. Most women our age are married with children, and most of the blogs I've read and conversations I've had with women my age who have cancer are heavily focused on how to navigate parenthood with cancer. Don't get me wrong, I deeply sympathize with and validate those feelings. But they are not MY feelings. And the part of me that has always, always wanted to be a mom makes me a little selfishly resentful.
Our lunch ended; we went dutch. As we walked out into the parking lot, Betsy gave me a motherly warning about long sleeves and sunscreen, as she is a veteran of the vampire-like photosensitivity brought on by my current drug combo. She and I made plans to stay in touch, and vowed to meet up again as soon as our busy cancer-littered lives allow, with the unsaid addendum, “When we're
both not bedridden from side effects.” When I got into my car, I shot her a text message.
"Hey, we should start a dating app for people with cancer! We can call it pity-pity-bang-bang!!!"
"That's HILARIOUS," she texted back.
Meeting (and really liking) Betsy was kind of like discovering that my new roommate with awesome fashion sense wears the same shoe size. Or perhaps it was more like knowing that the soldier fighting alongside me on the front has had ample enough training to have my back if things go south. My demographic might be teeny-tiny, but it's comforting to know that I do not exist in a vacuum.