#BeyondTheBreast: Progression Is a High-Stakes Game of ‘Now You See It, Now You Don’t’

March 23, 2018

Metastatic breast cancer, also called stage IV breast cancer, is breast cancer that spread beyond the breasts and nearby lymph nodes to other parts of the body. Metastatic breast cancer affects the bodies and emotions of those living with it in unique ways.

For LBBC’s spring #BeyondTheBreast campaign, on March 26, members of LBBC’s fall 2017 class of Hear My Voice Outreach volunteers wrote about their experiences with metastatic breast cancer and how the disease has affected them.

Here, Heather Donohue, 45, of Memphis, Tennessee, writes about how it feels, physical and mentally, when a treatment fails, and breast cancer continues to spread. She also recorded four vlogs about her experience. Read her story and learn how you can get involved with #BeyondTheBreast.

What is progression? You think it should be a positive thing, as in “oh we’re making progress here,” but it isn’t. No, progression is a bad sign. It means the cancer is spreading, even further than it already was. When you have metastatic (stage IV) breast cancer, you know the more organs the cancer spreads to, the worse your chances are of surviving. I started out, in 2015, with an initial diagnosis of metastatic breast cancer, known as “de novo” metastases. Sounds pretty fancy for such a messed up situation. All it means is that I never had a chance – my cancer was insidious from the beginning. When I was diagnosed, the cancer had not only formed a golf-ball-sized lump in my breast, but had already crept stealthily into my lymph nodes, my sternum and my spine. The cancer cells oozed out into the rest of my body. The spine is an especially scary place, invaluable in its job of holding your skeleton intact, while vulnerable to compression fractures as the vertebrae give way. My biggest fear is that I will lose my ability to move.

I did six rounds of chemo over the course of 5 months. My scan afterward showed no evidence of disease. My doctor damn near called it a miracle. He said he had never seen anyone respond that well. My family and friends celebrated while I tried to hold onto the idea that this might actually last. Eight months later, my “remission” was over. This time the cancer was invading my ovaries, with a mass on each side. I had a full hysterectomy, I agreed to another medicine change and I joked my way through surgery, recovery, and forced rest, all while welcoming my first grandchild, hanging out with family and restlessly awaiting my return to work. I do not do well when I am inactive. That 6 weeks of recovery was brutal.

Palbociclib (Ibrance) seemed like a wonder drug after the side effects of the previous treatments. I read all the research, thinking that I was mentally prepared for the point when it would stop working. Right on the money, I hit the 10-month mark and my tumor markers skyrocketed. There is no preparation for that. I thought the 10-month average sounded so long. That is how we measure our lives now. It exists in monthly increments, between scans, and based on what treatment we are on at the moment. But 10 months was not nearly enough. Now I was getting greedy. I had bargained for a few months. But the truth is I want more. I am learning to say it out loud. I want more than mere months, more than specific milestones. I want my full life – not 3 years, 5 years, 10 years. No, I want the rest of my life to play out so that I become a little old lady who still goes hiking, who drifts in my kayak, who collects stray dogs, who is there whenever family needs me. So the news that the drugs were not working, that the cancer had spread to my liver and now encompasses all of my spine, reaching into my skull – yeah that news sucked the wind out of me. There was no hopeful reprieve from this. I switched meds four times in as many months, with no results. Now it is in my lungs too. I went from the strongest person I know to a broken, withering shell. I could not walk – the pain crumpled me to my knees every time I tried to stand up. I could no longer eat. I had no appetite. My stomach was flip-flopping all over the place. Copious diarrhea, combined with constant nausea, and vomiting bile, left me 12 pounds lighter in a matter of days. I was weak, mentally exhausted and rapidly reaching the point of giving up. It is easy to drift into the abyss, letting the sickness take over and receding into yourself. There is peace on the other side, I know. No more fighting, just finally rest. I almost went there. It would have been pure bliss.

I am exceedingly stubborn. When people started treating me as if I was near death, my fighting instinct kicked in. I thought, “I’ll be damned if you’re going to tell me when I’m done. I’ll tell you when I’m done!”

That small spark of iron fell upon a minuscule kernel of hope, which came from the clinic chaplain. She prayed with me as I lay in the chair, hooked to multiple infusions while the nurses halted my downward spiral. Together, that combined to light a fire in my soul. I consented to yet another treatment change, starting back on IV chemo. I am not ready to die. Not now. Not anytime soon.

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