I still have something to say about my cancer experience. It is interesting to be on this side of it. I’m done, right? Cured, healed up. I look totally normal. I’m back to work. What more is there to say, it’s all behind me now, right?
I am not trying hold on to my year of cancer in some morose way, but I am still trying to assimilate all that it taught me and make sure I never lose sight of those lessons.
It’s spooky to look back on the subtle intuition I had that something was wrong. I remember talking with a friend several months before my diagnosis and saying “I feel like I want to go see my gynecologist, but I don’t really know why. I can’t just go in without a specific symptom, can I?”
I have been deliberately practicing listening to my body for the past 15 years, working hard to unlearn the longstanding habit of ignoring my body and its symptoms. After four years of medical school during which I dissected a human body, four years of residency training during which I took care of hundreds of other people’s bodies, and several more years of clinical practice, it came as quite a surprise to me to notice that I also had a body and that it also needed tending and care. I think there is something unique about feeling and experiencing one’s own body with the background of a medical education. Perhaps it is also somewhat limiting and confining making unlearning at least as large a part of the work of listening as learning.
The morning I woke up with calf pain, I walked out into the kitchen and said “I think I have a DVT” (deep venous thrombosis, aka blood clot). Then I proceeded to get dressed and go to work and ignore the pain in my calf for three more weeks. Actually, I didn’t exactly ignore it. Turns out, DVTs hurt a lot. I massaged it and stretched it, wondered if it was from my new running shoes, and talked to my husband about what it might possibly be, completely forgetting that I had made the diagnosis within the first one minute of feeling the symptom. I finally got the ultrasound and went on a blood thinner. That was June of 2014. I was 47.
In August, I had surgery to remove a large but benign appearing ovarian mass which had become painful and which turned out to be the culprit and the full explanation for the blood clot. This particular type of ovarian cancer, clear cell, is associated with blood clots which thankfully helped lead to an earlier diagnosis of the cancer. In preparation for surgery, I went off the blood thinner. The clot in my leg extended, and I had a blood clot go to my lung. I had to have a basket-like filter placed deep in my inferior vena cava to catch any potential runaway clots during surgery. It was a wild ride there for while.
I have always considered myself physically tough, and all my life I have enjoyed pushing my body to extremes. In high school, I climbed mountains in the Cascade Range which tested me to my physical and psychological limits. Climbs of these glaciated volcanic peaks usually start in the dark sometime between midnight and 2:00am, affectionately known as the alpine start. The tired hours spent slogging uphill at this time of night can be exhausting, disorienting and discouraging. But I enjoyed pushing myself into the realm of the unknown in terms of physical exhaustion and pain, altitude sickness and tolerance for fear. I learned a lot about enduring unpleasantness, tapping into the force of will, and putting one foot in front of the other.
Still, many things in life do not go as we expect them to, and I did not bounce back from surgery easily. After a second major surgery to check for lymph nodes and metastatic disease, I was weakened, thin, unable to work and facing 12 weeks of chemotherapy. It was in this period of time that my dad sent me the following email relating the journey I was about to take as being similar to a mountain climb.
“This is one nasty mountain to climb, but I remember you telling me about the early morning nausea and resolving to quit at the next big turn, but staggering on. And then realizing that dawn was breaking and the world was laid out below in a way most people couldn’t imagine. And then knowing that it was all so deeply worthwhile.”
Cancer treatment was hard, but in many ways, I have never felt so alive. This is the part that I never want to forget.
The night before my first chemotherapy treatment, the anxiety really set in. I woke up feeling pretty upset and worried. I hiked up the hill near my house before sunrise, crying and feeling afraid. When I got to the top I turned around to see my friend Keith running up the hill to catch up with me. Keith is the perfect person to show up at a time like that. We talked and cried and gradually got the thing turned around to view it in a different way. Even though now I cannot recall what words were shared between us, his company was such a gift to me. We walked the whole 3.4 mile loop, and I finished that walk feeling totally different than when I had started. Soon after that, I made it through my first chemotherapy wrapped in a cozy blanket made for me by my coworkers at the VA and surrounded by caring nurses and loving family members. (The knitting did not last long. The medications made me so drowsy I was usually dozing off before the first infusion was complete.)
I went for that same walk nearly every day of treatment, and I often had company. In fact, I noticed that if I called a friend to accompany me for a walk, he or she would drop anything to join me. No one ever said no which was a huge gift to me, and I suspect to them as well. It can take a force as powerful as cancer to jolt us out of our habitual mode of busyness and doing to take the time to do something simple like take a walk with a friend. I am forever grateful to each person who shared those walks with me. And I have never seen a more beautiful Missoula fall. Everything was so vivid and clear and alive. Even the same walking loop right near my house was never the same twice. The nuances of light and cloud and shadow flowed into my already broken-open heart, and I was held in the embrace of this nourishing place where I live.Watching the season change from fall into winter felt so symbolic of my own journey. I wrote to myself:
“The last of the leaves are coming down and they are damp on the ground. There is snow in the upper foothills, not that far away. I see the aspen leaves fluttering back and forth so quickly, the gold and the white surface flashing in the wind. This has become my visual representation of the paradoxes of my life right now, the coexistence of pain and joy, inseparable, one not existing without the other.”
One of the things I had to look forward to on my journey with cancer was losing my hair. I knew it was coming, and I decided to meet it head on. This whole cancer thing felt like some kind initiation to me, an unplanned deep retreat testing me on every level. I was not expecting the uncomfortable, itchy, painful bumps on my scalp as my hair started to let go. I took the intermediate step of getting a short haircut just to make the mess a little more tolerable and waited until the time was right for the head shaving. I did not want to wait to wake up with huge clumps of hair on my pillow as so many people have described. One day, I was doing a particular type of body scan practice called the 32 parts of the body. The very first item in that body scan is head hair. This is what I wrote in my journal after that meditation. “Head hair: I can feel where my head hair connects to my scalp and where my scalp gives rise to my head hair. It is so alive up there even as my hair falls out. There is a prickly and slightly painful sensation in the scalp where I can sense that the head hairs are falling out. They need to fall out. They are falling everywhere, on my shoulders, all over the inside of my hats, on my sheets. Tonight is the night I need to shave my head. Head hair.”
I had been given a card by my step father which contained one of my favorite quotations ever and which helped me sculpt my cancer journey in a more purposeful way.
“Life is not about waiting for the storm to pass, it’s about learning how to dance in the rain.”
How do you dance in the rain when your hair is falling out from toxic chemicals trying to kill any remaining cancer cells and you feel moody and weak and tired and vulnerable? My answer was to have a head shaving ceremony. I invited over the right people for such an event and asked them to bring something to read or to say to acknowledge this rite of passage. I thought about crying, but then I felt the strength of the love present in the room with me buoying me up in my little boat, and I realized I was okay. Everyone participated by cutting a snip of my remaining hair off with scissors and then we got out the clippers and finally the razor. When it was all smooth and shiny up there, each person greeted me by touching their forehead to mine. It felt like a blessing and a welcoming by each person present. Then we danced. Literally.
There were some other hidden gifts of cancer. I felt the love and support of my family and friends in a way that I never had before. It was a little like having a sneak preview of my own funeral and learning that I have been loved and admired, that I have inspired or had an impact on others. The image of a spider web was strongly in my mind. We are all on the web somewhere and what happens to one of us can be felt by every other person on the web. We are all so connected.
Cancer gave me the chance to practice saying yes to help and favors and acts of kindness. It is a good practice for each of us to give generosity and to help others in need, but I think it is a more advanced practice to allow one’s self to receive. Allowing myself to ask for and receive help was part of being stripped down of all my ego holdings, admitting that I am totally dependent on others for help, totally vulnerable, totally human.
Getting cancer was also a license to tell people I love them. That was fun! Another thing one should not have to get cancer to have permission to do.
My chemotherapy ended early due to toxicity from the medications just as we headed into the stillness and darkness of the deep winter months. On the winter solstice, I had another party, one of sharing the lessons that can be learned from times of darkness and lighting tentative flames as a symbol of the light to come. The earth lay dormant with no sign of anything growing, and I felt the same thing happening in my body. The assault had ended, and now there was a pause before the healing could begin slowly and tentatively. It would be months before there was a crop of short hair on my head, and as if to show that life really is creative, it came in with curls.
My cancer journey was the most intense experience of my life. I realized then, and I see it now looking back on it, that I was walking around with a totally broken heart. Broken as in broken open, and a broken open heart is huge. It is easy to reach, it feels everything deeply and intensely, it is not capable of shutting the door or guarding itself. I could cry without seeing it coming because life is tender and fragile and beautiful. I could feel love flowing through me all the time, and it did not have conventional limitations, rules or restrictions. Joy and grief intermingled which of course they must. People would sometimes say they were sorry for what I was going through, but I was never sorry. I knew what mattered. I felt alive. I would not have traded it for anything.
I made several promises to myself during that time. One of them was to always try to keep my heart open in all circumstances. This is not so easily done. It may seem difficult to keep the heart open during pain and suffering, but I am beginning to think it is even harder to maintain an open heart in the face of habitual patterns, lethargy and mundaneness. It may also seem like having once been through such an intense experience of storm and high surf that one would never be at risk of slipping into emotional lethargy again. I think this is why it bothered me to hear the phrase “So you’re done, right?”
No, I am not done.
I don’t ever want to be done.
I want to be alive with an open heart at all costs.