Category Archives: Uncategorized

Working with our propensities

Working with our propensities is a very helpful way to think in terms of “me.” Just think of it as propensity. The propensity to get angry: you explore the energy of anger, and you even want it to come up so that you can know it and be intimate with it. In terms of our connectedness with each other, you know that this same energy runs through everyone, and you say to yourself, “If I can really know this, rather than it being something I’m ashamed of, it can become the vehicle for working with other people who have anger.” Because I’ve known it so intimately and I’ve known how to make friends with it or how to accept it, its power to destroy me or its power to destroy my happiness or to create suffering gets weakened and weakened and weakened.” -Pema Chodron

The Call to Adventure

Today I reread an old email newsletter from an astrologer friend, Joseph Crane. In it, he comments briefly on the differing connotations of the words “journey” and “adventure.” This inspired me to do a bit of reading and review.

How timely. I’ve been saying that I don’t particularly care for the phrase “cancer journey.” It doesn’t bother me if it’s meaningful to others, but it doesn’t seem to describe my experience. 

For me, cancer (more accurately, currently, the side effects of cancer treatment) is not a special journey. At least I want to remind myself that it isn’t. I won’t disagree that it’s a “thing” to contend with, something that has changed my life and that of my family. But in both a broader and a smaller sense, cancer is simply what’s happening. 

This cancer has been a wake-up call, and continues to be, I can say gratefully. But many daily experiences can be wake-up calls, if we’re paying attention and not dismissing them as “negative.”

“Journey” derives from Latin and Old French, originally meaning a day’s travel or a day’s work. It has since taken on a secondary meaning: according to Google, “a long and often difficult process of personal change and development.”

But consider the meaning of “adventure.” The word derives from the Latin, having to do with arriving. The current definition: “an unusual and exciting, typically hazardous, experience or activity.”

This brought me to renew my familiarity with The Hero’s Journey. One of the best resources discussing the universality of the hero’s journey in myth, religion, and fairy tales is The Hero with a Thousand Faces by Joseph Campbell.

For now I’ll keep this brief. Here’s a sentence by Campbell that made me think of cancer as the herald of adventure:

The herald or announcer of the adventure is often dark, loathly, or terrifying, judged evil by the world; yet if one could follow, the way would be opened through the walls of day into the dark where the jewels glow.

Walking

After a short night of sleep last night (I’m still on a low dose of Prednisone for a few more days), I finally got myself up and out of the house by lunch time. I headed to W. 19th Street in the Heights and finished some last-minute holiday shopping. Between the Heights and Amazon, I successfully avoided malls this year!

I came home, emptied the car, and went for a walk. I cannot emphasize enough what a big deal it is for me to feel like walking when I’ve already been shopping! I hope I never take such energy for granted.

img_20161222_160007512I may take it for granted at some point. Then I hope I’ll remember once again to appreciate it.

Now a short rest before starting a bunch of gift wrapping…

An Infant Immune System

I was at MD Anderson this morning for lab tests. I’ve been getting them pretty frequently lately, once or twice a week, while the stem cell team continues to monitor my hemoglobin and creatinine levels. (I’ll write in another post about my adventures over the last six months with hemolysis–hemoglobin breakdown.)

After a delightful lunch break with my friend Marlin, I returned to MDA for a follow-up with the hematologist. While waiting in Hematology, I received a follow-up call from a nurse in Stem Cell. She said this morning’s lab results show my hemoglobin dropped since last week (not good), and creatinine had bumped up (also not good). Not terrible, but not great. So I’ll be back tomorrow for a unit of blood.

This is one reason why it’s hard for me to make plans. 

It takes at least a year for the immune system to recover after a stem cell transplant. It can take people the better part of two years before they feel they have significantly improved. My transplant was on March 26, 2016, so my new immune system is not even nine months old.

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.