On healing & “cancer”
I found the lump on my back while attending Kristy’s graduation. I thought it was the stadium seating, with the chair having an uncomfortably sharp edge. My physical therapist friend advised I get it checked out ASAP. Trying not to overthink it, I got a biopsy a week later at Kaiser. The doctor discovered I have a rare tumor “friend” know as a Desmoid Tumor, aka Aggressive Fibromatosis. I call her Ursula.
She has tentacles, malicious intent, is relentless, and really f***ing hard to kill. Borderline impossible. Instead of the sea, she lives in my fascia, the connective tissue between the skin and muscles.
Since 2011, I’ve had one surgery, two months of radiation, two medical therapies, one trip to the ER, and two experimental operations (called HIFU). I’m currently trying Ayurvedic medicine, a “plant-based” diet (aka vegan), yoga, meditation, essential oils, and more supplements than I care to count.
In my experience, she is either in a state of rapid growth or shrinkage, which I’ve experienced multiple times in the past two years. She seems to have stabilized after the last round of HIFU in December, but recent swelling could either be immune response or continued growth. If it’s the latter, I’ll start chemo later this month (I’m also considering surgery).
About Desmoids
In honor of Rare Disease Day (Feb. 28), I’ll share a little more about Desmoids. They are one of the rarest tumors — you’re more likely to get struck by lightning than have one of these (only 2–4 people per million, <900 people per year diagnosed in the US). It’s caused by a mutation in the DNA, and typically is activated through impact, i.e. a broken limb or pregnancy. Cells (fibroblasts) turn on to repair the tissue but mine are missing the “off” switch that normal cells have. So the cells keep reproducing…and reproducing. These tumors don’t invade, instead opting to push things out of the way.
The doctors don’t like to surgically remove Desmoids because the recurrence rate is over 50% (inflammation from surgery tells any remaining cells to keep reproducing!). Most of the treatments are cancer treatments, and the rate of growth is in-line with cancer. I don’t know if it’s better or worse that it’s technically not labelled cancer. Why go on chemo if I don’t have cancer??
They are most commonly found in the abdomen and, depending on location, can cause all sorts of internal issues, including death. In the grand scheme of things, I’m fortunate, since the location of mine is superficial.
Some lessons
Uncertainty
If you know me, you know I love a good plan — calendar invites, planning spreadsheets, goals, and checkpoints. As long as I feel like I’m in control, I can let go and trust the process. The uncertainty of this disease (every treatment option has ~30% effectiveness rate and the sample sizes are tiny) has challenged me to the core. I’m not sure how much “better” I’ve gotten at this, but one this has CERTAINLY done is highlight a growth area for me.
Healing
The Book of Joy talked about the difference between healing and being cured. You may not be able to find a cure, but it is always possible to find healing.
“Adversity, illness, and death are real and inevitable. We chose whether to add to these unavoidable facts of life with the suffering that we create in our own minds and hearts…the chosen suffering. The more we make a different choice, to heal our own suffering, the more we can turn to others and help to address their suffering with the laughter-filled, tear-stained eyes of the heart. And the more we turn away from our self-regard to wipe the tears from the eyes of another, the more- incredibly- we are able to hear, to heal, and to transcend our own suffering. This is the true secret to joy.”
― Dalai Lama XIV
When Ursula came back in 2016 after a five year hiatus, my focus was 100% on curing myself. Attack and die! I gotta life to live…and an Ironman to complete.
When the HIFU didn’t work, I moved on to radiation. For treatment, I would cycle over to UCSF five days a week, between classes, for a 20 minute “zap”. While in a low point, I planned a future funeral date for Ursula, once again anticipating her death.
This last year, I’ve transitioned that to adopting a mindset of acceptance and love. I attempt to speak positively to Ursula, to check in, and see what she needs. Some days are better than others. I wish to let go of my suffering and move to a place where I can mentally and emotionally help others and surround myself internally and externally with joy.
The future
At the size of a large grapefruit, it’s now bigger than it’s ever been, and I’m struggling to stay positive and maintain my mobility. The ironic part is the more stressed I get, the tighter Ursula gets and arguably contributes to more growth.
Besides going to yoga everyday, I’m searching for ways to process this pain as I’ve been struggling to find my voice in this process. My hope is that by writing this, I can begin to accept what is and what I can control, and quite literally “get this off my back.” I’d love to hear any recommendations / methods for processing pain and (especially) uncertainty.
In the past year, I’ve restarted many things in my life, including my approach to health, my home, my relationship and my career. I’ve already learned a lot through this journey and I know I’ll be stronger coming out the other side. In the meantime, a few more tears and the hope of finding healing.
Thank you to my parents and friends for the flowers, meals, sleepovers, house keys, emotional support, and for riding this roller coaster with me.
With love,
vanessa
P.S. If you don’t have an Amazon Smile charity chosen yet (% of Amazon sales donated), think about choosing the Desmoid Tumor Research Foundation. They are doing a lot to support and find a cure for this rare and terrible disease.
P.P.S. I love hugs
P.P.P.S. Follow my journey long-form on Substack and short-form on Instagram
