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. It feels a bit like we’ve just finished frantically getting a fire under control. The fire didn’t destroy everything, but it sure changed the landscape around us. Now we look around and ponder how to we go about rebuilding and reclaiming our lives as a family? What is next?

The other strange part of this reflection is that the fire isn’t fully out yet. Although I am doing really well, I do still have numerous tumors. I remain in active treatment. I deal with side effects of treatment. I easily fatigue, my joints ache, my life is interrupted once a month for the next dose (an all-day affair of labs, doctors and infusion.) Although we are eager to rebuild this fire ravaged landscape of our lives, we can’t build on the sections which are still smouldering. And those sections may remain permanently. There will most likely always be embers or blazes which require monitoring and attention.

The rebuilding process is overwhelming. Everything in our lives has been touched by this fire of cancer. Our faith looks very different than it did when I was diagnosed. It has been reshaped in drastic ways which affect every facet in which we have built our family. Overwhelmingly God’s love through this process has brought us to our knees. It’s also revealed areas of faith that weren’t built as solidly as we thought. My faith is more grounded, my perspective more loving, and my desire to serve others is greater than I even imagined it could have been five years ago.

Our family has been singed fighting this fire. We have begun the process of counseling and dealing with the emotional effects of this journey. We are stronger today. My children are wise and compassionate beyond their years. Daniel and I have a deep understanding of in sickness and in health vows after 13 years of marriage. Our parents and siblings have been in the trenches with us in ways we can never repay.

Relationships are touched. Being the needy one in most of my relationships was bound to take a toll. Fatigue plus an introverted personality make it difficult to be the friend I aspire to. I am so thankful for old friends who have stood alongside us, new friends who have walked with me, and the incredible melanoma community locally and nationally I have been allowed to participate in.

And we also begin to address things which have been put aside while our focus was putting out flames. I had my first dentist appointment in five years last week. Who needed to go to the dentist when you are going to die? Except now I am going to survive this and I’d like to bring my teeth along for the ride. We are living in our “starter home” which is beautiful and sufficient, but we dream of a little more elbow room for growing children and friends.

It’s an interesting stage. There is a lot of talk in the cancer world about survivorship and dealing with life after cancer. It’s a wonderful problem to have. But the flames of cancer have left us dirty and reshaped. Rebuilding is going to be a new kind of work. It’s daunting. We don’t have a blueprint yet. We are interrupted by the work of the embers still smouldering. We are weary. We are hopeful. We have survived. Five years.

New FDA-approved melanoma drug tested at UA Cancer Center | University of Arizona Cancer Center

New FDA-approved melanoma drug tested at UA Cancer Center | University of Arizona Cancer Center.

I had the opportunity to speak with the woman who wrote this piece today. I feel so blessed to have cutting edge care in my backyard! At the hospital where I was delivered, no less!