Living Dynamically with Metastatic Disease

Write something inspirational about metastatic cancer. That is my pursuit. One might respond, what in the world could be inspirational about an incurable stage of cancer? Well, before I can answer that question, I feel that I must tell you about myself, so you know I am somewhat qualified to speak on the subject.

I began navigating the waters of cancer in 1993, when I was thirty. Stage 2, mastectomy and 6 months of chemotherapy. I never said why me, I just wanted as much information as possible. I also became very focused and was not going to allow cancer to deter my plans for a family, so right after my last treatment, with little to no hair, I marched into my first adoption meeting. A strong will carried me through comments from my doctor such as “As long as your husband realizes he may be raising the child himself.” Really? Where did she think I was going! Perhaps it was pie-eyed optimism, or just a refusal to say UNCLE. Growing up in a large family, I believe it was the later. With stubborn determination, I was able to navigate all the hoops of adoption not once but twice. Happy to say I made it to see both my beautiful children grow into lovely young adults.

My sister, on the other hand, was not so lucky. She was diagnosed at age 38, just after delivering her son three months premature. Stage 3. She was a great mom, tending to her two pound miracle. That’s what she referred to Michael as, her one miracle. To ask for a second seemed too much to expect. To watch her navigate the rough waters of cancer was inspirational, to say the least. “Courage” is an easy word to say, but a most difficult thing to maintain day-after-day, when your breath is being taken from you, and you feel aged and tired, despite being only 42.

I released cancer’s grip on me by having a second mastectomy in 1993. This one was prophylactic. I had had enough of uncertain mammograms, biopsies and being injected with radioactive isotopes. So I went to my surgeon and requested the surgery. He sat across from me and responded “I need to call your husband.” I smiled, shook my head and told him that was the most sexist thing I ever heard. After all, it was my body. This was to be his first prophylactic mastectomy, so there I sat in his office, assuring him that it would be OK. Too funny!

I had decided not to have reconstruction, I wanted to be able to catch any recurrence early. I remember telling my daughter, who was all of 4, that I was going into the hospital for my second mastectomy. She was so thrilled and ran around the house yelling, “Mommy’s going to be just like me!” I could do nothing but laugh.

The waters became calm and I was able to navigate my life without any turbulence from cancer. But stress comes in many forms and I allowed it to entangle me completely, when my spouse informed me he no longer wanted to be married. I imploded and buried myself in work. Losing weight, being exhausted and thinking nothing of it because I was working long hours and dealing with the emotional fallout for both myself and my children. Until the fated day I felt a lump above my right clavicle.

“It’s been twenty years, this has nothing to do with your cancer.” These were the words I heard the doctor say as he was checking me for TB. “Do you really think I have TB? I want to be 1000% sure it’s not cancer.” Then he actually mentioned the cost of tests. Needless to say I ran to another doctor. The biopsy confirmed that cancer was again making me sit up and take a hard look at the currents in my life. I was allowing them to push and pull me into rapids and a whirlpool from which there would be no return.

Nodes lit up like a cross on my chest, ER/PR + HER -, so tamoxifen was the first thing tried. Unfortunately for me, 10 weeks later, I had 20 lesions in my liver. Game changer. In the midst of such rough waters, adrenaline helps maintain the frenetic pace required to steer you through the relentless medical, emotional and financial rapids.

I was able to enter a clinical trial, which combined standard chemotherapy (Taxol), and a study drug (PI3 kinase inhibitor). Luckily for me, it was available locally in Sarasota at Florida Cancer Specialists. After only two months, my scans showed a clear liver, and all but one node was clear. I made it through the rapids once more. I could breathe.

It has been two years since I began chemo again, with too many infusions to count. Yes, there’s been further bumps, but throughout this journey, I really tried to keep my spirits up, using music, exercise, seeking out people and activities to keep laughter in my heart. Believe me there were many times when I had to fake it till I could make it.

One of the organizations I sought help from was The Center For Building Hope. I met some of the most inspirational people there, who had overcome many hardships, with many more ahead and yet could still find laughter and beauty in each and every day. We were in common waters, there were no sorrowful looks, or probing questions. We could learn together how to read the river and navigate safely. My transformation from frenetic reactionary to a purposeful powerhouse was beginning.

I knew I needed to keep physically strong as well and joined a local breast cancer Dragon Boat team, that had just been created “Survivors in Sync”. I have paddled through my chemotherapy treatments, competing with and enjoying the company of wonderfully determined women, growing in strength emotionally and physically. In that the boat, I have learned to be purposeful and powerful in my pursuit of life.

So perhaps now I am ready to address my pursuit. There is nothing inspirational about metastatic cancer. There is, however, something very inspirational about the many people living with this disease. Anyone can find peace in calm waters, but it takes real skill to remain calm and even find joy in the turbulent rapids and whirlpools of metastatic cancer. This disease may one day cause our death, but it will never take our lives.

by Lisa Merck

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