How metastatic breast cancer helped me jump into life

My primary doctor referred me to a social worker to help me deal with the devastating news. A condescending and saccharine woman, she said it was natural to be angry at the cancer. I explained that I was not angry at the cancer; I was angry at my primary doctor and my rheumatologist who ignored all the warning signs until the cancer progressed. The only useful thing the social worker told me was that after her cat had a stroke, like mine, her cat howled in the night, like mine. I forget how that came up. I was feeling guilty about my cat’s psychic pain.

In December of 2018, I told my two doctors that I had lost 15 pounds in two weeks, more than 7% of my body weight. They both told me that cancer wasn’t the reason for my sudden weight loss. I wanted to believe them, although a friend kept telling me that kind of precipitous shrinkage was ominous.

Insisting on testing, discovering a diagnosis

Over the next few months, I developed severe pain in my chest, a strange dry cough, and increasing breathlessness. They said it was smoking. I kept insisting it was too sudden and severe, like the weight loss. I told my primary doctor that there was a blood test for cancer. She asked me to find out what it was. I thought she should find out: she is on the staff of a major hospital. Surely, she could call oncology. But neither of us looked into what that test was.

When I couldn’t walk from my bedroom to the bathroom without stopping to catch my breath, so weak I had to hang onto things on the way, my primary doctor finally ordered a chest x-ray. It showed a 12.2 cm mass in my chest – huge! No wonder I had chest pain and trouble breathing. This mass was in my mediastinum, the space between the lungs. (What is that? I didn’t know I had a mediastinum.) She presented six possible diagnoses for a mediastinal mass, ranging from easily treated to deadly with a short term of survival. She ordered a biopsy and made an appointment for me with a thoracic surgeon. The mass turned out to be none of the six possible diagnoses.

When my primary doctor saw the biopsy results, she made an appointment for me with a breast oncologist. Dr. C was blunt: You have stage IV breast cancer. It is incurable. (I would have appreciated it if she had eased into this. I couldn’t absorb it.) A PET/CT showed cancerous lesions in my spine, rib, pelvis, and other areas around the lungs.

Treatment decisions and an unlucky break

Dr. C said there are some treatments that should give you some time, but you will always have breast cancer. We will try three in sequence; each could give you a year or two, and then chemotherapy when they fail. We will try to avoid chemo as long as we can because it will destroy your quality of life. (She didn’t say “destroy” but that was the gist.) What do you want to do? What did I know? I chose the first pair of medications on her list: fulvestrant and palbociclib (Ibrance).

I wanted to start palbociclib that day. Her staff said it was too expensive, but I could get it free through a patient assistance program. It could take a month. I was not waiting. I would die without treatment, so there was no reason to save money. I had enough to live to a ripe old age if I was careful (my mother had died recently at 98). That kind of longevity was apparently not in the cards for me. I got a starter supply of palbociclib that day and then qualified for the patient assistance program. Phew.

A couple of days later, the nurse who administered the fulvestrant injections said, “My medicine is going to make you feel better right away.” Not immediately, but on the third day, assuming I would still be incapacitated, I bought cat food and arranged for it to be delivered because the walk home was uphill. As I headed home from the store, though, I realized walking uphill was easy. I kept going up another hill to my community garden, where I was able to squat to plant strawberries. I could not have done that a few days before. I wanted to stay in the garden and so called the cat food delivery person. He said he was coming right away, and I had to hustle home. I ran home and tripped over a barrier and broke my knee. The delivery man didn’t come for another three hours! I spent the next day in the emergency room waiting for an orthopedist. The rheumatologist was furious.

So now I had breast cancer and a broken knee, but I felt so well!

I experienced a sort of elation, inexplicably. Maybe it was that I went from misery and incapacitation to being able to breathe! At least for the time being, the cancer was not affecting me. I also felt free to do just what I wanted to do. I am a social scientist, and my career has been writing grants and conducting research on sexual assault, domestic violence, and human trafficking. I didn’t have to do that anymore! I could do arts and swimming and moving. I wanted not to work so much. I wanted to have fun.

Dancing toward a new self

I started dancing. I felt good in my body. I liked my new light weight. I started with a program designed for people with cancer, Moving for Life, virtual because of COVID. Another program, Dances for a Variable Population, had classes outside, in parks, with good spacing between the students. I went to one. We had to dance our names. This is the kind of exposure, forced creativity, that usually paralyzes me, but I did it. It was a breakthrough. I took more of these classes. I am an introvert. I don’t put myself out there. Now, with nothing to lose except time, I stood out front. I put everything into it. I smiled. I loved the program, the artistic director, the air and sun, and myself.

That sort of euphoria is not sustainable.

For one thing, I got sucked back into work. For another, sometimes I don’t feel well. And yet another, sometimes I get my feelings hurt. Still, it is not my life before cancer, and I am not the same person. I joined a swimming pool. I take naps. I started taking more than off-season time at the family house on Martha’s Vineyard and paying for it. Why not? I am not going to outlast my money now.

I don’t how much of my joy is the dancing, how much is denial, how much relief. I am much easier on myself now. After the useless social worker, I was referred to a psychiatric nurse practitioner. She was a bust as a therapist, but she put me on bupropion (Wellbutrin) because she was aware of a study that suggested it can ease fatigue that comes from cancer and medications. She kept saying I was resilient. Why did she think that? What choice did I have? She said the alternative to forging ahead was to be crushed and retreat.

The joy of living with MBC

Adapting this way was probably possible because I am asymptomatic. Not everyone can take this route. I felt well and strong and had the energy to dance. I said I was dying, but I wasn’t. Death was on the horizon, but I wasn’t there yet. I could even dance on a broken knee, and I did, all out. It is hard to explain the liberation I felt, the pleasure in moving, trying new things, enjoying even the air. The only afflictions I feel are the side effects of the medications. I had little or no side effects on the first two treatments. I actually felt better than I had in years. My main concern was that I seem to be moving through treatments too fast.

The third treatment, abemaciclib (Verzenio) and anastrozole (Arimidex), is difficult; my joints hurt, I sometimes have immobilizing fatigue. There have been times this past year when I spent days in bed, and then I didn’t want to go on. That is not joyous. I have been lucky that usually I can do things that make me feel better and make life more exciting. Even in the periods when fatigue and pain knock me down, I let myself off the hook as I never had. If I am tired, I sleep. If I am kind of tired, I lie down and watch bad TV and do word puzzles. I am allowed. I am often happy, even happy-go-lucky, the last thing anyone would have said of me before MBC came to stay.