Looking For Light in a Dark Room | Cancer Knowledge Network

Looking For Light in a Dark Room | Cancer Knowledge Network.

Living with chronic advanced cancer is a tough path. I understand that others around me often don’t really understand that melanoma has no remission. It’s fatiguing to deal with as a patient, family and surrounding community. And thinking about living a long life post “lab rat” (clinical trial patient) is intimidating not knowing what long term health issues may surface.

Finding ways to support this population is imperative and one of the reasons I consider myself a patient advocate. It’s nice to see my own needs considered and reflected on by other patients.

Just kidding, but for reals

Yesterday at my appointment with the nurse practitioner, we were discussing some unusual side effects I’ve been having. My trial nurse looked up a list of side effects of one of my drugs. The list was extremely long and literally included these four side effect possibilities.
Weight loss
Euphoria
Weight gain
Depression

Of course these were not listed together so perhaps we wouldn’t notice? Tonight I prayed as I opened my pill bottle.

“God, please allow this bottle to bring euphoria and weight loss as the side effects. Just kidding. Sorta. But for reals. Amen.”

I’ll let you know what happens.

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Five years of melanoma

Five years ago today I was diagnosed with melanoma. The phone rang while I was sitting at the kitchen table creating picture labels for dresser drawers with Joey and Abby. I had NO idea what was coming or what the diagnosis meant. Joey was 5 and Abby was 3. I had Danny come home that day at lunch to cry on his shoulder in fear. I knew melanoma was “the bad skin cancer” but not much else.

It’s been five years, seven surgeries, six biopsies, ten treatment approaches, nine chemotherapy and immunotherapy drugs, tumors come and gone through treatment and surgery and two years of dealing with brain tumors and their aftermath. We’ve come a long way, baby! And I know a lot more about melanoma and its treatment now.

We are in an odd place though. Continue reading