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I discovered the lump on my again whilst attending Kristy’s commencement. I believed it used to be the stadium seating, with the chair having an uncomfortably sharp edge. My bodily therapist buddy prompt I am getting it looked at ASAP. Attempting to not overthink it, I were given a biopsy per week later at Kaiser. The physician came upon I’ve a unprecedented tumor “buddy” know as a Desmoid Tumor, aka Competitive Fibromatosis. I name her Ursula.

She has tentacles, malicious intent, is relentless, and in reality f***ing onerous to kill. Borderline unimaginable. As an alternative of the ocean, she lives in my fascia, the connective tissue between the outside and muscle tissues.

Since 2011, I’ve had one surgical operation, two months of radiation, two clinical treatments, one travel to the ER, and two experimental operations (known as HIFU). I’m these days making an attempt Ayurvedic drugs, a “plant-based” nutrition (aka vegan), yoga, meditation, crucial oils, and extra dietary supplements than I care to rely.

In my enjoy, she is both in a state of speedy enlargement or shrinkage, which I’ve skilled a couple of occasions prior to now two years. She turns out to have stabilized after the final spherical of HIFU in December, however contemporary swelling may both be immune reaction or persevered enlargement. If it’s the latter, I’ll get started chemo later this month (I’m additionally considering surgical operation).

About Desmoids

In honor of Uncommon Illness Day (Feb. 28), I’ll percentage a bit of extra about Desmoids. They’re one of the vital rarest tumors — you’re much more likely to get struck through lightning than have this type of (best 2–four folks in step with million, <900 folks in step with 12 months identified in the United States). It’s brought about through a mutation within the DNA, and in most cases is activated thru have an effect on, i.e. a damaged limb or being pregnant. Cells (fibroblasts) activate to fix the tissue however mine are lacking the “off” transfer that standard cells have. So the cells stay reproducing…and reproducing. Those tumors don’t invade, as an alternative opting to push issues out of the best way.

The docs don’t love to surgically take away Desmoids since the recurrence charge is over 50% (irritation from surgical operation tells any last cells to stay reproducing!). Many of the remedies are most cancers remedies, and the speed of enlargement is in-line with most cancers. I don’t know if it’s higher or worse that it’s technically now not labelled most cancers. Why cross on chemo if I don’t have most cancers??

My former classmate Karelia helped map remedy choices

They’re maximum frequently discovered within the stomach and, relying on location, may cause all kinds of interior problems, together with loss of life. Within the grand scheme of items, I’m lucky, because the location of mine is superficial.

Some courses

Uncertainty

If you recognize me, you recognize I like a excellent plan — calendar invitations, making plans spreadsheets, objectives, and checkpoints. So long as I believe like I’m in regulate, I will be able to let cross and consider the method. The uncertainty of this illness (each and every remedy choice has ~30% effectiveness charge and the pattern sizes are tiny) has challenged me to the core. I’m now not positive how a lot “higher” I’ve gotten at this, however one this has CERTAINLY finished is spotlight a enlargement space for me.

Therapeutic

The E-book of Pleasure talked in regards to the distinction between therapeutic and being cured. You won’t be capable to discover a remedy, however it’s at all times conceivable to seek out therapeutic.

“Adversity, sickness, and loss of life are actual and inevitable. We selected whether or not so as to add to those unavoidable details of existence with the struggling that we create in our personal minds and hearts…the selected struggling. The extra we make a special selection, to heal our personal struggling, the extra we will be able to flip to others and lend a hand to handle their struggling with the laughter-filled, tear-stained eyes of the guts. And the extra we flip clear of our self-regard to wipe the tears from the eyes of any other, the more- incredibly- we’re in a position to listen to, to heal, and to go beyond our personal struggling. That is the actual secret to pleasure.”

― Dalai Lama XIV

When Ursula got here again in 2016 after a 5 12 months hiatus, my center of attention used to be 100% on curing myself. Assault and die! I gotta existence to are living…and an Ironman to finish.

Lovely sure HIFU would remedy my problems with Ursula, permitting me to transport on

When the HIFU didn’t paintings, I moved directly to radiation. For remedy, I’d cycle over to UCSF 5 days per week, between categories, for a 20 minute “zap”. Whilst in a low level, I deliberate a long term funeral date for Ursula, as soon as once more expecting her loss of life.

Little Mermaid-themed funeral for Ursula, hosted through Cassidy & Nic. And sure, we ate fish.

This final 12 months, I’ve transitioned that to adopting a mindset of acceptance and love. I try to discuss undoubtedly to Ursula, to test in, and notice what she wishes. Some days are higher than others. I want to let cross of my struggling and transfer to a spot the place I will be able to mentally and emotionally lend a hand others and encompass myself internally and externally with pleasure.

The longer term

On the measurement of a big grapefruit, it’s now larger than it’s ever been, and I’m suffering to stick certain and take care of my mobility. The ironic phase is the extra wired I am getting, the tighter Ursula will get and arguably contributes to extra enlargement.

But even so going to yoga on a regular basis, I’m in search of techniques to procedure this ache as I’ve been suffering to seek out my voice on this procedure. My hope is that through scripting this, I will be able to start to settle for what’s and what I will be able to regulate, and relatively actually “get this off my again.” I’d love to listen to any suggestions / strategies for processing ache and (particularly) uncertainty.

Prior to now 12 months, I’ve restarted many stuff in my existence, together with my solution to well being, my house, my courting and my occupation. I’ve already discovered so much thru this adventure and I do know I’ll be more potent popping out the opposite aspect. Within the interim, a couple of extra tears and the hope of discovering therapeutic.

Thanks to my folks and buddies for the plants, foods, sleepovers, area keys, emotional beef up, and for using this curler coaster with me.

With love,

vanessa

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