Restart and recharge after cancer diagnosis

My 6th Blogging Anniversary has come and gone and a different one is on the horizon.

2015 and the majority of 2016 is a haze of health and medical driven demands. Food has been only sustenance and not the joy it once was.

The mere thought of writing lost as the fog in my head obscured any stories I might tell. With sadness I realized, “I’ve lost my words.” Lost to the reality of over 3,000 back and forth miles and hundreds of hours of doctor appointments, treatments, hospital stays, and follow-ups.

Eating became perfunctory, mechanical, and tasteless. Food comfort came in old habits with quick meals of carbs, fats, and salts. Lost was the joy and creativity of meal planning and the meditation of chopping. Missing was the beauty of a well organized mise en place. Days turned to months challenged with a special diet that offered no inspiration. Pounds came and went of their own accord. Time passed in a blur. Sometimes I wondered, just what did we eat?

This blog was my casualty, neglected and waiting. What about the food? I hardly cared, somehow sinful in the foodie bubble I inhabit.

Together, my darling dear and I faced our multiple challenges making priorities and letting some things fall off the list. Some were dropped with guilt and longing. We engaged in the work of treatment and healing with our whole being, staying positive in our warrior’s stance that these cancers would not take us. We have so much more to do.

Desmoid Tumor Awareness Month

It was on September 30, 2015 I first heard the word Desmoid Tumor and by coincidence, September is also Desmoid Tumor Awareness Month. Desmoids are a non-metastasizing localized intermediate sarcoma. They are also called aggressive fibromatosis and a rare disease where barely 2-4 people per million are diagnosed in the United States — a year. So rare, the bulk of cancer research in study or dollars do not extend to these edge cases, and thus there is no “normal and accepted treatment.” In fact, many physicians are completely unfamiliar with the disease, sometimes causing more damage than good in their initial treatments.

Fortunately, I was referred early to a sarcoma expert. Since January 2016 I have been participating in an experimental treatment at Stanford Medical Center in Palo Alto using MRI Guided High Intensity Focused Ultrasound to ablate and kill tumor tissue. So far it has had great positive effect. There will be other treatments to try stop the growth and minimize the hard scar-like cells that surround muscle, nerves, and bone.

I want you to know, I am more fortunate than most diagnosed. Many are suffering and enduring grave life changing surgeries, radiation, chemotherapies, and sadly death. Age is of no consequence.

Here are links if you want to know more.

• Desmoid Tumor Research Foundation for official information,
• www.desmoidawaremess.com for info and activities, and
• Looking back through the mirror a personal note from my Facebook page about how my tumor was discovered

I am coming around again, back to a cycle of feeling normal(ish) and with that I am so very thankful. I am beginning to enjoy thinking about food and catching up to where I left off. There is so much more to tell you.

Coming Soon, Part Two – Where in the world has Robin been?

Down, but not out, this disease does not define me. Hints to be found on my Instagram feed @robinehove or on my What about the Food? Facebook page