This is supposed to be a blog about life after cancer. 6 weeks post-recurrence, I’m still stunned that I’m now writing about life with cancer.
I apologize for my absence. It’s been weeks since I’ve felt comfortable enough to publish a post.
It’s not that I haven’t tried. A desktop folder, creatively-titled “Update” houses seven different versions of this post – “Update”, “Update on lungs”, “Update-2” – each no more than a few sentences. All cut short once I’ve realized that the tone is too personal, too optimistic, too vague or too depressing.
The root of my writer’s block is that steady states don’t exist. There are tremendous highs. I’ve tucked the kids into bed at night and promised to stay strong. I’ve told them that I want to exercise and get into great shape. “What kind of shape?” Lauren teased. “A square? A rectangle?”
We’ve laughed at the absurdity of this experience. Before I was wheeled into surgery, my Mum showed me a comment from the original cancer post. My good friend Hilary nailed it with both humor and timing:
“I know with all my being you will live until your boobs sag like droopy dog’s ears.”
Yes please, to all of it.
But the inverse of levity is anxiety. There are days when I sit on the edge of sanity and wait for results…from surgery…from bloodwork, from scans, pathologies, treatment options….
I find it hard to be part of the real world. It doesn’t fit anymore. Beautiful moments are painful. Mundane moments seem bizarre and out of place. “Hi Jessica, did you know that July is National Hot Dog Month?” “Hi Jessica! Mary here with BE SOCIAL! One of my fun, delicious clients is….”
It’s often easier to retreat. To find solace behind a computer screen and engage with others who understand this world and speak my language. SNB, BRAF, PD1, MEK, NIVO, PEMBRO, IPI, EORTC 18071, and the most important word of all: NED. No evidence of disease.
It may be an obvious point, but a stage IV melanoma diagnosis stacks the cards against you. According to a top melanoma oncologist, whom I visited for a second opinion, I have a 75-80% chance of recurrence and there aren’t any treatment options for resected patients – high risk patients like me, who have no active tumors. The recommendation: watch, wait, scan every few months.
My current oncologist – the person who’s been responsible for my care since I was first diagnosed at age 25 – has a different plan. She wants to hit the disease aggressively with several months of adjuvant treatment, a drug called Ipilimumab that will rebuild my immune system.
My family and I had spilled tears of relief coming out of our visit. I’d emailed friends, ecstatic about what had essentially been hailed as a cure. “She won’t say the word “cure”, refers to it as a 4-letter word – but it’s as close as she’s come to seeing long-term remissions.”
What she didn’t highlight is that Ipilimumab only works for 1/5th of patients. That people often pull out of treatment because of the side effects, many of which last for months after the final infusion.
Though I love my doctor’s positivity, she tends to focus on the best possible outcome, even if it happens at the bleeding right edge of the normal distribution.
But I’m not one to wait for cancer to return. To where, my liver? My brain? My spine? A 20% response is worth the side effects, and it’s a far better response than treatments that were available just a few years ago.
Besides, I’ve got food and nutrition on my side.
I’ve been cooking as much as ever, finding inspiration in the cancer-fighting fruits and vegetables that I pick up from my CSA and local farm stands. I’ve come to respect the healing power of turmeric; like flour on a baker, you’ll find me dusted with saffron-colored fingerprints.
I know that some of you have come to this site in search of updates; I’ve had an easier time posting snapshots to Instagram, so wanted to point you in that direction should you worry about any silence on my end.
My goal is to make it through the next few months of treatment and get back to posting regular entries on this site. I miss it; I miss the friendships and the daily interactions. Most of all I miss telling the stories of mistaken identity, top secret GMO missions, and Valentine’s Day dinners gone wrong. Happy stories. True stories. Stories from a thoroughly average, beautiful life.
I hope to see you back here soon…
Thinking of you and wishing you all the very best in these next steps of your journey. xx
Thank you so much Nicole 🙂
You are loved by those you barely know and we are sending all the optimism and healthy vibes we can your way. Your courage is astonishing. Posting these words, and the emotion behind them, when all you want to do is hide, is a lesson for us all.
Not that that was your intention – or maybe it was – but sometimes we just put it out there to help ourselves deal with a crappy hand. Sending blessings to you, my friend.
Thanks so much Kasha, and it’s so true, writing is therapeutic. In some ways I feel as though I’m writing someone else’s story, and those hours of disconnect are bliss.
Nice to see your post Jess – you really are an inspiration! Keep the faith and keep moving forward as you are. You can do this. I know it. Much love to you xo
Thank you so much ML! Sending so much love back to you xoxox
Great post Jess. Your shares are important as so many take inspiration from you. Crowds of people around the world love you, are rooting for you and are learning how to fight the big fight. Bon courage. xoxo
Thank you so much, that means a lot; these updates are so painful to share, but I hope that some good comes of me telling my story xx
Your story is very important Jess. Good has come from it and will continue to come from it. Bon courage.
Thanks mum xoxoxox
Stay strong Jess. We are all pulling for you! We will miss you so much at GBC this year, but know you will be there next year!!! So glad you are posting to keep us updated. We love you!!!
xoxo Nelle
I admire your strength and courage. Thanks for the update, let me know when you’re up for visitors. xox JK
What a beautiful blog today. I have been checking daily to hear from you. I so admire your honesty and strength Jessica. We will all face something similar at some time in our futures and I will call upon your inspiring example when I do. I wish you happiness and contentment in all the wonderful everyday things in life. Those I think are the best things. Thank you Jessica for sharing yourself with us. I means a lot to so many.
Love your blog! Keep the faith..,,
And I’m always just here for the food. I had no idea, the story behind it.
I have three little kids, and this was a reminder of my mortality. It’s cliche, but we never know what tomorrow will bring. And I needed that, yet again. Sending positive, turmeric-infused thoughts your way.
Thx for keeping us posted.
What an emotional rollercoaster? I am so sorry you and your family have had to go through this 🙁
i was wondering if you have researched medicinal mushrooms? Really potent stuff and may be worth doing some research and passing it by your doctor to see if it can work in conjunction with your treatment.
please email me if you need any further pointers 🙂
I like your attitude and I am sure with your determination the latest treatment offered will be well worth it, my best wishes to you 🙂
Your food looks soooo appetising I want all of it LOL
Have a good week & thanks for waltzing by 🙂
Life is truly a journey and we are certainly thinking of you as you keep your strength and hope moving your beautiful life forward!
I miss your post! Lovely to see the lovely dishes and amazing colors again =)
Don’t feel the need – guilt – worry to post. Just take care of you! We’ll be here when you need us 😉
Hello, stopping by from WW. I wish you all the best and keep the faith and positive thinking! Your food looks delicious! Wishing you a happy week ahead!
I admire your spirit and your doctors treatment sounds promising, and not to impose my thoughts, but I am prompted to suggest that you research “Alkaline foods and water” how they can help , if you have not already.
Such an awesome spread of good food, love your photos!!!
Be blessed and remain strong every day!
Karren
Prayers for you to get well. Godspeed.
Prayers for you and your family from me and my family.
In Florida now driving my cousin to radiation daily. She has brain cancer. Your post is lovely and you are awesome! Keep the faith and saying prayers for you and others fighting this nasty monster. Cancer Sucks!
Teresa
So happy for you to post Jess, but so sorry the circumstances are so hard! Thanks for the update. You’ve been in my prayers and will continue to be so. Thanks for mentioning Instagram for keeping up with you. Headed over there now.
Don’t feel bad for wanting to talk with others who understand your new language and world. You need them. Reach out here when you need us. 🙂
You can do it Jess. You’re a strong woman. Love on your family. Enjoy your food. And I can’t wait to hear if you decide to become a circle, a square or an icosahedron! 😉
Gosh so sorry to hear your news! Keep cooking! x
You’ve got this! My mom worked the cancer floor at the hospital for years. There are scary stories out there, but there are also survival stories. Hang in there. At least one doctor has a plan in place. It may just kick cancer in the butt.
oh my gosh. how did i miss all this?!
and this post gave me serious goosebumps.
sending all the love and strength and (((hugs))) that I can!
~ Christy
Thinking of you, Jess! Thanks for the update, and I hope to hear lots more, filled with wonderful news and happy moments. xoxo
Please know you are in my thoughts. I can only imagine how difficult everything is at the moment. But always hope for a better tomorrow. And hold steadfast to love, right now. We, your blog friends, are all cheering for your and sending you virtual hugs. (And wishing we could sit with you at your table – what with all your mouth-watering photos all the time…) Seriously. (((HUGS)))
Your posts are beautiful. Really don’t know what to say except that I hope you beat it. Sending you good vibes from Down Under. XO
Jessica, thank you for your courage and bravery to bring us this update. I WILL see you back here soon, and I look forward to your posts and recipes and beautiful words + photographs. All of my love, all of the time, xo.
my thoughts and prayers for you and also your family. Stay strong..
And you got great nutritions indeed…the food seems super heallthy and yummy as well..