Here goes everything

My brain works on worst-case scenarios. I don’t know whether that’s my training as a contract attorney or whether it’s my instinct as someone diagnosed with stage IV cancer in their mid-twenties, but it is what it is. And never has that nihilistic demon kicked harder than on day one of my clinical trial when I took my first dose of an experimental cancer drug. Shadowy fears of liver failure, heart attack, and a whole host of hypochondriac nightmares populated my brain staring down at the nondescript dark gray capsules. And I will admit, I had to live in a temporary fantasy that this was completely safe and normal in order to get them down. The smiling faces of the nurse, my husband, and my mom helped a lot in that regard.

this is fine.jpg
You know, sometimes I resent how much I relate to this picture.

I recognize that my worst-case scenario brain is a manifestation of anxiety, but I cannot help thinking that such anxiety is, well, completely rational. After all, my worst-case scenario came true: I lost my career, my ability to become a mother, and my likelihood of survival on the evening of July 25th, 2015. Couple those horrible blows with the fact I’ve never won a coin toss in my life, and it’s hard not to think of myself as chronically and critically unlucky. So why then would I enter into a trial, in which I’m leaving my survival and physical well-being up to chance? (Ok yes, also quite a bit of science, but still a healthy dose of “meh, we’ll see.”) I have a few important reasons and I think of them every time I take those pills. I figured they might be worth sharing.

Research is the only way forward. I’m not saying that because I think of myself as a martyr in this situation, but generally speaking, we don’t get anywhere if people aren’t willing to lay it on the line. We need to research experimental treatments to find out what works, what doesn’t, and most importantly why. If the treatment works for me, or even if it doesn’t, we will know more than we did before the trial started. That knowledge is powerful and has the potential to help every single member of the colorectal cancer community. Being part of that community has shown me the value and importance of such knowledge. My fight is important, but the fight is bigger than me, and I need to make my fight count in the overall effort to beat this beast. Also, standard of care treatments for my particular kind of cancer are not going to cure me. They may hold it at bay, but the quality of life sacrifices I’d have to make merely delaying the inevitable are unacceptable to me, so if I’m going to go down I’d rather go down swinging. That’s just how I do.

57bad8a61700003600c749d6
Spirit animal.

I’ve got some serious muscle on my side, and by muscle, I mean brains. I work at a colorectal cancer advocacy organization and because of that, I have met some truly incredible human beings. Through my amazing colleagues and community, I have been able to discuss my disease and treatment with countless authorities on the topic: researchers, oncologists, sophisticated patients and caregivers, advocates, community leaders, and many more. Early on in my cancer experience, someone very wise told me you have build a good team and you need to be the quarterback. Calling the shots never gets less scary knowing what’s on the line, but I have so much faith in my team and that makes all the difference.

Luck is how you look at it. It’s true that my expectations for how my life would turn out shattered like a florescent light tube after my diagnosis, but the pendulum eventually swung back and in all honesty, I’m grateful. I lost my career, but I found a new one in a place that I love and in a community that I wouldn’t trade for all the bright light and shining stars of Hollywood. I lost my ability to have my own biological children, but I’ve forged bonds with family and friends that are truly unbreakable. Strangers became friends, friends became family, and family became the unshakable foundation of my personal strength. And I still haven’t given up hope that one day I will find my path to motherhood, even if it looks different than I imagined. That dream is one of many that fuels my fight. And as far as survival goes, I’ve stopped defining having a long life as necessary to having a good one. I consciously spend my days doing things I enjoy and believe in with people I love and admire. Not everybody gets to do that, so I suppose I am lucky after all. Still working on the coin tosses, though.

Coin-Toss.gif
Totally counts.

 

So no matter if this trial goes well and I live to fight for better policies and more research dollars in the halls of Congress, or if it goes poorly, and I’m fighting for additional weeks or days at a time, my fight will always be a good fight and it will count for something. If you ask me, that’s not a bad worst-case scenario.

 

5 thoughts on “Here goes everything

  1. Thank you Julienne! I appreciate your bravery and sacrifice. I am 53 and recently diagnosed stage 3 (on my Sons birthday of all days) and start chemo pill regiment Monday with mixed emotions as I am sure you can relate to. You have chosen to fight the fight and that makes you a winner in my book. All the best to you and have a blessed Thanksgiving 🙏

    Like

  2. I love this & can relate to so much of it . The battle is a tough one … but one worth fighting for & giving it your all ( which you obviously have / and are still doing !) I’ve said that cancer has given me many gifts … to realize what & who is important… to not stress the small stuff as cliche as that is … and to appreciate every day . I have what I call is My Tribe … and I couldn’t have gone through this journey without them . That’s one thing for sure you find out who your Tribe is !
    I send to you Blessings & Healing Vibes ~ I look forward to more of your genius / funny / strikingly sad but true account of the battle we are all up against with this crappy ( pardon the pun ) disease . Hang in there ! You Are A Warrior Woman ~ Kick it’s Ass !!!
    Lenore Jenkins ~ Stage 3 / one year survivor

    Like

  3. I’m glad I decided to click on your story. i usually try not to read about other people talk about their cancer story because it makes me feel uncomfortable and scared. But I will be following your story as I am debating on if I want to be brave and start a clinical trial for myself. I am also a stage iv colorectal fighter, been fighting for two years now and Diagnosed when I was just 28. This my sound bad but I’m glad Im not alone in this fight and I’m not the only one who never wins at coin toss 😉
    Wish you the best of luck and thanks for sharing your story.

    Like

Leave a reply to Autumn Cancel reply