the good

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.

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11 Responses to the good

  1. sclazarus says:

    Jen, you are not only good, you are beautiful and fearless. I mean, how very Jen to work treatment around travel. I am grateful for you.

    Liked by 1 person

  2. Thank you for sharing your experience, I have my first visit with my Oncologist on the 23rd of this month, My PCP diagnosed me with stomach cancer when a biopsy was done at the hospital came back positive for cancer. I am trying to keep a cool head about everything.

    Liked by 1 person

  3. Sharon teig says:

    Grabbing life the balls..good for you…i continue to root for you..much love..your cousin sharon👋 #1

    Like

  4. Cha Cha says:

    So glad you’re taking life by the balls. Feeling Good is only the beginning. Being with your Busan family is probably the best medicine you could have. Enjoy the love. Soak it all in. Bottle it and take it with you. Make more trips. Loving you living life.

    Like

  5. Annemarie says:

    As I was one of the parents passing thru,Jeffery is our son,was so impressed with the Vagina monalogs,and YOU! Wishing you the best that there is out there for very special people..you have touched many people’s lives..I hope you know that! Thankyou for being you

    Liked by 1 person

  6. mmwm says:

    Yes, so good that you can bask in sunshine now and feel it on your skin. And not have stomach pains. And have fun and relax among good friends. Glad for you.

    Liked by 1 person

  7. Diane Warstadt says:

    Jen, I was right there with u in that beach cottage
    Grabbing onto every word… U rock, U are one
    tough woman. 😘

    Liked by 1 person

  8. Sandra Porter says:

    Glad to have finally met you in beautiful St. Augustine. You look marvellous! Hope the bombs do the job!… M&D

    Liked by 1 person

  9. Thanks for your inspiring words and insightful perspective. I look forward to the next instalment. And the next, and the next, and then all the writings on other topics that will follow.

    Liked by 1 person

  10. Dianne Quinn says:

    You are an amazing woman Jen. Thank you for sharing. I wish you the feeling good that you are having now and always! I agree 110% on all of these replies left for you. Wonderful words given along with your positive and courageous outlook. I wish you all the best.

    Like

  11. Randee says:

    Yup…cancer sucks. Been there …done that.
    Lost my dad to cancer …then lost my mom to cancer…and then the beast attacked me . Through the grace of God I am still here. I pray every day for those who battle with cancer and for God to heal and protect those I love . Every day is a gift . Carpe Diem!

    Like

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