the good, the bad, and the fucking weird

This morning, I can feel the tendrils of indian summer folding back the edges of summer proper. I usually feel a tinge of sadness at this time of year – a little bit of post-birthday blues along with my seasonal affective disorder whispering in my ear that t-shirt weather will soon be gone. But today, the blues are at bay and the inner voice is quiet.

I’ve written a lot about how cancer has forced me to live in the now, but that’s not entirely accurate. My dear friend, April, visited this summer. She knows me as well as anyone, yet she needed to ask a question that I’ve been asked variants of many times. “Being a realist, how do you stay so positive?” I laid down my cribbage hand and really thought about it, and then found myself able to articulate the ‘how’ more clearly than I ever had before, which – shocker – I did by using a metaphor.

Imagine I have three roads ahead of me. There’s this one road that’s a dead end – quite literally. On this road, I get sick and die. Then, there’s this middle road, a continuation of the road I’m on now, where I remain on some form of treatment that keeps me stable. On this road, I am able to live somewhat of a normal life, despite the fact that I am tethered to consistent medical intervention. And then, there’s the road where I fully respond to some treatment, and that response has longevity. On this road, I live disease-free for many years.

With the first road – the bad road – there’s not much I can do. Sure, there are some logistics to figure out: what I want the end of my life to look like, where I want my ashes to be distributed, who gets my guitar and the rights to my screenplays. But I’ve already asked and answered all of the hard questions, already pondered my mortality. Those other two roads are life, no matter how long. And so the thing that gets me out of bed each morning, that keeps me investing in relationships, that urges me to continue working toward my career goals, is that on those two roads exists a future. So I need to live in the now in a way that bends that potential future toward the same fulfillment and self-actualization that all of us seek.

After my last treatment cycle, I was launched into a week that I can only describe as pure bliss. First off, I felt physically great. I had stayed on the mix of over-the-counter and prescription drugs that had been administered in the hospital to keep my side effects at bay.  I got to spend a good chunk of afternoon with one of my most favorite humans, Lucy, who lives in L.A. She was in town directing a shoot, and she managed to block off enough time for us to get in a bellyful of pierogies at Veselka, a bountiful trip to one of my fave vintage shops, and a proper face-to-face, laughter-infused catch up.

Then, one of my closest homies from Busan, Gino, arrived on the eve of my 43rd birthday. Just for context, Gino is one of the first friends I made in Busan, part of the framily that I spent holidays with. I crashed on his couch for six weeks when I was first diagnosed in 2010, and so he has been on my melanoma journey with me from day one. He was also the person who drove me to the airport on that hellish day in 2014 when I needed to leave the life I had built to come home and square off with stage 4 cancer. G and I spent my birthday playing Neil Young songs, kayaking, doing a five-mile bike ride, eating pizza and playing poker with my family. The next day, we cruised into the city, and I introduced Gino to soup dumplings and the rock-and-roll rich history of lower Manhattan.

Saturday was our family’s annual ‘leo party,’ a low key affair compared to past years, but with the addition of laughter and shenanigans of the newest generation in the clan. As I sat in the middle of a group of the people I love most in this world, I was able to see that aforementioned future, and to realize just how bright it is.

I had my first set of scans on my IL-2 trial this week. I was fortunate to have my best friend, Jaimee, visiting when I received the scan results. She, Ariel, and I sat in the doctor’s office for over an hour – camera rolling ,waiting for my oncologist.   Despite being aware of the weight of the news we were awaiting, we managed to fill that room with balls to the wall laughter. Later, Jaimee turned to me and said, “I feel a little weird saying this, but that was a really fun afternoon.”

Melissa finally arrived and laid everything out. My chest is still clear. Woot! As you may recall, my last scans had shown two new tumors in my abdomen in addition to the four we already knew about (that progression was why I had to switch treatments in the first place). This time, five of the six tumors did grow; one of them (the only one not in an actual organ) is now about the size of a baby’s head.  However, one of the tumors disappeared completely. This, coupled with the fact that I am asymptomatic (ie. feel fucking awesome, eating and shitting like a champ), leads Melissa to believe that the IL-2 drug is having a positive effect. As for the tumor growth, it is quite possible that this is something called ‘pseudo progression’. Sometimes, when someone undergoes a cancer treatment that is designed to activate the immune system, all of the T-Cells (the ones that fight cancer) rush into the tumors to do their job, causing the tumors to swell, which makes them appear larger on the scans.

Basically, right now, my disease is stable, and likely responding to the treatment. This is good news. Although it’s so fucking weird for me to call the presence and growth of my cancer good news, this is the road that I live on – that middle road. And as much as I’d like to find my way to that disease-free road, right now I’m alive and I’m functioning and I’m smiling and I’m thriving and, most importantly, I’m not dying. While this past spin around the sun has included a lot of profoundly difficult times, so has it encompassed some of the best memories I’ve made to date. As I continue to stay grounded, to relish each moment, I have come to learn that the act of putting one foot in front of the other means that I am moving forward.

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15 Responses to the good, the bad, and the fucking weird

  1. Lucy says:

    You never stop blowing me away jen I love you so ❤️🙏🏽❤️🙏🏽❤️

    Liked by 1 person

  2. Paul Fellenz says:

    I believe you have learned one of the secrets of life. “Always be alive to the present moment and hope in the future.” Thank you for sharing your life.

    Liked by 1 person

  3. Jilly says:

    You go girl !

    Liked by 1 person

  4. Sandra Porter says:

    You write like a champ. And live like one.❤❤❤

    Liked by 1 person

  5. john71 says:

    Pseudo-progression is like that asshole friend that disregards special events by getting way too wasted…every time…then ends up reminding you why you love them at least a little bit about who you are when it gets so hard to remember.
    Here’s to purposeful, fulfilling middle roads. Thanks for a great post, Jen!

    Liked by 1 person

  6. Cha Cha says:

    We all are relishing in this news. This has been a very very profound period of enlightenment. Everyday becomes a blessing we’ve all come to cherish and show gratitude for. Today the future is bright. That is all we need to know until tomorrow. Bless you Jen.

    Liked by 1 person

  7. Cindy says:

    You continue to amaze me
    I’m actually sitting here crying because I love ur spirit. I love ur positivity and I love that u are loving life because u deserve it. I’m crying happy tears because u r the exact person who will teach my daughter strength determination and will always be such a great role model for her
    I loved your birthday and I love u
    Continue to do what u r doing
    You are my hero always

    Liked by 1 person

  8. anne Allegretta says:

    You are such an inspiration. Keep putting one foot in front of the other💕💕

    Liked by 1 person

  9. Sheryl Gina says:

    Well said
    Your amazing !!
    Sending you love and positivity always!!

    Liked by 1 person

  10. frankieherrington says:

    Always love reading your story. So glad you had a good time for you B.day. tons of love xxx

    Liked by 1 person

  11. alyson eltman-zekowski says:

    sending lots of love and prayers your way. xoxo

    Liked by 1 person

  12. sclazarus says:

    Here’s to bliss. Thank you for sharing this excellent news. You are on the right road. T shirt weather will be back again and again and again…
    I love you, Susan

    Like

  13. Sadie Mullin says:

    Delighted with your progress.You write about your journey so beautifully. Thank you for sharing. Keep strong. Love & prayers are sent your way. May God keep you well . xx

    Like

  14. Molly Williams says:

    It’s been 2 months since you’ve written, Jen. I’m worried and wondering where you are.

    Like

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