I’m writing from the balcony of a gorgeous beach house in St. Augustine, staring at an exquisite seascape. It’s 62 degrees. I have a strong cup of coffee. The only sounds are the steady crash of waves and some buzzy creature that has gotten itself wedged into the window frame. If I could paint a picture of what my life would look like at 42, this, right here, wouldn’t be that far off. Except for the cancer. I wouldn’t have painted that in.
It’s been nine days since I started my new treatment. Since my last post I learned that I didn’t qualify for the Plan A clinical trial. Because I had been infused with ipilimumab (which has an extremely long half life) in December, there would be no way of knowing which drug was producing any results I may have had, meaning the data collected in the trial would have been inaccurate. So tumor bombs it is.
My oncology team were super awesome about creating a treatment schedule that allowed me to be on this trip, to watch two of my best friends from Busan tie the knot. I was incredibly anxious about side effects impeding my ability to enjoy my time here, or thwarting my travel plans altogether. The most common side effects of the Glembitumimab/Varlilimumab combo are extreme fatigue, rashes and hair loss. However, they are cumulative… meaning these side effects are more likely to come on after my next infusion. So far, I feel like a fucking million dollars. I mean, I’m tired, but a cancelled 7am direct 2 hour flight to Florida that turns into a 10:30am to Boston, 4 hour layover in Logan, 3 hour flight to Jacksonville and hour long drive to St. Augustine will result in tired.
The most significant change I have noticed in my body over the past week is that I no longer have stomach pains. Up until my first Glemba/Varli infusion, I had been experiencing daily mild pain in my gut, which makes sense since that’s where all of the disease is. As hesitant as I have been about being ‘too’ optimistic, I am taking this as a good sign. I have to. I have been so, so careful about choosing the words to describe my outlook – cautious optimism, guarded pessimism – but no phrase can really sum up what it means to feel completely healthy while sitting on the knowledge that I have an illness that could kill me very quickly if treatments continue to fail.
I made a vow to myself that during this weekend, especially on the day of the wedding, I wouldn’t talk about my cancer. The spotlight belongs on the happy couple, the spotlight belongs on happy, period. But I haven’t been able to keep that vow. A bunch of the people here are people who know and love me, who know exactly what I’ve been going through… people who, in the not so distant past, were people I spent every day with, people who know my deepest self, people who I have not yet been able to have proper face to face conversations with about ‘the cancer.’
And then there are the people here to whom I am connected peripherally, who I have either met while they were passing through Korea (such as the groom’s parents) or who share several common friends on Facebook. The introductions go something like this:
“Hi, I’m so and so, and I know Miriam/Seth from high school/college.”
“Hi. I’m Jen. I know these guys from Korea. I was in a band with Seth.”
And then I see the 2+2 click.
“Oh. You’re that Jen. I’ve, uh, read some of your posts that Seth shared on Facebook”
And so, despite my pre-game self pep talks, many conversations have gone there. Most of them have started off by my new acquaintances giving me the once over and noting how very healthy I seem, then hesitantly offering something along the lines of, “So you’re good now?” And then I need to make a decision. Do I go the buzzkill route? “I mean, I have stage 4 melanoma, so…,” which would require a lengthy, sciency diatribe to explain the rapidly progressing state of cancer treatment and how this all pertains to my own prognosis. Or, I can go with the simple answer. “Yeah, I’m good now.”
Because the truth is that right NOW, at THIS moment I am good. I thought that being the only person not drinking at a wedding would kind of suck. But the bright side of my forced sobriety is that it has afforded me the clarity to really take everything in – the tranquility of this seaside cottage, the feeling of sunshine on skin that is no longer allergic to it, the comfort of pick-up-where-we-left off friendships, the firecracker spark of new friendships, laughter-filled trivia games, the love that is wrapped around me like a warm, soft blanket on a cold winter’s night. I’m not good. I’m much, much more than good.