Waking up

As a teenager I learned the fine art of pretending nothing bothered me. I got pretty good at it. At times when nothing seemed to be going well at home, actually at the worst of times, I felt I fooled everyone (except, of course, my family, but they were going a little miserable, too).

I carried this habit well into adulthood. It took a conscious effort over many years to stop trying so hard to fool others and myself. Gradually, with the support of my meditation practice, I found the bravery to be just as confused as everyone else, and not have to have everything figured out. I also discovered some clarity and even cheerfulness when I relaxed the tremendous effort it took to wear a mask of perfection.

Beginning in 2011, it seemed that I had a whole new level of self-honesty to learn. I got sick with one thing after another: bone spurs in both shoulders, carpal tunnel syndrome, rheumatoid arthritis. I managed to endure a lot of pain and put off going to the doctor, thinking there was something I was doing wrong: I just needed to exercise, get more rest…. 

I was 50, but I thought of myself as a “young 50.” My body couldn’t possibly be falling apart! I preferred to keep working and hoping things would get better. One ailment at a time, when I couldn’t stand it any more, I finally went to doctors and got appropriate treatment. 

I had faced uncertainty and impermanence in my life. But I realized that facing a loved one’s death and facing my own aging and mortality are two very different things.

In 2013, I was diagnosed with cervical cancer. The symptoms scared me, so I didn’t put off seeing specialists, and even got a second opinion. I had a hysterectomy and ovaries removed, and follow-up scans every three to six months to confirm I was cancer-free. Recovering from the surgery, I eased back into work over the next few months, and eventually was working full-time again. Back into old habits, pushing myself too hard.

Last year, in the fall of 2015, I was hit with something much more dire. My symptoms developed over a couple of months. I put off going to the doctor once again. I was just tired, overworked, out of shape…. Before getting a diagnosis, I was first directed to physical therapy for my leg pain. PT didn’t help, but I was too passive about the process to speak up. When I finally got a blood test, the doctor sent me to the emergency room for severe anemia the next day.

After five days of inpatient testing, my husband and I met with the doctor. I will never forget the look on Dr. P’s face. He is a handsome young man, and since meeting him in the hospital I had enjoyed seeing him smile. Now he looked at us across his large polished desk, stacked with journals and paperwork. His face was so sadly expressive he almost didn’t need to say it.

Primary plasma cell leukemia. At first they thought it was multiple myeloma, but MM develops over years. This was a much more aggressive disease. Primary PCL is also rare, so there isn’t a lot of data about outcomes. 

Chemotherapy was not just recommended–it had the potential of immediately extending my life. The goal was to get the cancer reduced to zero (from 95%) in order to prepare my body for a stem cell transplant.

Cervical cancer was a bit of a wake-up call, but nothing like this.

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