A C-word Journey: Chemo Stormy Waters

I came across a quote in the Russian-speaking internet space by M. Fray (a pseudonym for an enormously popular female author) that, in free translation, reads: “if you truly love life, you let it be what it is.” I paused. Typically, we say this about people or in the context of parenting. It was stretching it further to say it about life itself. It was a continuation of a quote stating, “it’s easy to disperse the clouds, how about leaving the weather to be what it is?” A person quoting it, used it to describe the impossibility of living through the war. To me, it resonated with the journey I’m currently on. How do I do that? How do I let life at the moment be what it is? Over the last five months, I had plenty of opportunities to learn that going for “what it used to be” or “what it should have been” is nothing but pure torture. But I’m nowhere near the point of acceptance, either.

My therapist–whom I’ve only met for four online sessions so far but with whom I feel like I have nothing to explain or spell out–she truly gets me–suggested “connecting with my essence.” I’m not quite sure now what that essence is. The suggestion came as a counter to my point that I seem unable to do things that “I’m used to doing.” She challenged the temporal dimension of my statement. “Why is it something you are used to doing or intend to get back to eventually and not something that you do because it is simply you?” she asked. That mainly referred to writing and taking pictures of nature, particularly flowers. I thought that indeed, lilac blooms mid-May and peonies in early June. They adhere to Nature’s Laws, not my chemo schedule. So, I shared a few pictures; it felt good. She also suggested trying to retrain my mind to do things, even when it’s raw. This is what I’m doing right now writing this piece.

I had my first chemo infusion on June 7th and haven’t had a half-day feeling physically comfortable since, navigating a complicated aftermath of side effects of chemo drugs and side effects of drugs given to combat those side effects. I was warned that the first five days may feel like a bad flu, a terrible combination of fatigue and sluggishness. It came in waves; on day three I had about a ten-hour period when I didn’t feel strong enough to open my eyes or to turn from side to side in my bed. On Day 6, the weather was cooler, and it was raining most of the day. Around 5pm the rain stopped, it was about 63F (17C), and I felt a desire to venture out. At first, I stepped out to our yard, but the grass was wet, so I got out of the house and made it to the end of our street. Twice. The coolness of the air, the light breeze, the clean and calm smell right after the rain felt magical. I had a couple of hours to rejoice in my seeming improvement before strong pain appeared in my hips and legs. The drug that was supposed to stimulate my bone marrow to produce more white cells–released through the patch on my shoulder 27 hours after the chemo–was doing its job. The bones were expanding, hence the pain. On Day 9 I had a blood test and the results sent me down a spiral of debilitating anxiety until my oncologist called back. My body had overreacted to the drug. It responded strangely and strongly—about a week late and producing roughly four times more white blood cells than it should have. At least it explained the pain two weeks after the infusion. But it also means that I’m not driving and barely walking within a block, trying to make a daily dose of steps just circling our yard and going up and down our street. If all of this wasn’t entertaining enough, I’m dealing with extreme dryness in my eyes that’s responsible for a corneal abrasion–something probably flew into my eye, most likely while I was outside, that normally would have been washed away by natural tears.

I’m presented with a vivid irony. For the last twenty years, I’ve been taking care of my body by acupuncture, nutrients, massage, and various spiritual practices. I have a very sensitive body (for proof, see above the response to the bone marrow drug). I’ve been a bit apprehensive of the “Western” approach not because of some ideological or spiritual basis. It simply seemed to me that trying to “fix” one thing in the body, you are inevitably creating some disorder in another. The holistic side was missing for me. Maybe I went too far in that direction, or the Universe wouldn’t orchestrate this profound U-turn when I’m on more drugs in recent weeks than my previous fifty years combined (not sure it’s an exaggeration). Perhaps we need balance. Regardless, I feel like I barely recognize my body. I lost weight in the months leading to chemo–I’m now at the weight I had been for many years before gaining about 20 pounds four years ago for no seeming reason. And yet, it doesn’t feel like my body. As if I rented it out to the treatment and the treatment runs the show. I’m not currently in charge. Things that are happening to my body, daily and sometimes hourly, feel external.

I wrote about hair in my previous post. My amazingly generous hairstylist came to my house one evening, a few days before my first infusion. The “wig lady,” Katharine, explained to us that the American Cancer Society does not accept donations of color-treated hair. However, there is another organization, Children with Hair Loss, that does. Chrissy checked that they prefer donations of 10 inches long but would accept 8 inches. In the middle of my kitchen, Chrissy made 16 ponytails from my hair. We were both glad to discover that two of them were 12 inches long, the rest were 10. At least something positive comes out of this extremely challenging situation. When I thought about this moment weeks ahead, I imagined I would stop existing, melt or fall into a million pieces. Like with most expectations, it didn’t come to pass. I remained calm as Chrissy cut my ponytails. She styled a half-inch pixie from the rest. I was too scared to look in the mirror and only did when she left and after my husband saw it first. Strangely and completely unexpectedly, I liked it. It was very different and uncharacteristic but there was something cute about it. Also, because of the decade-long coloring, I expected what was left on my head after not coloring my hair for about two months to be plain grey. I was pleasantly surprised to see ginger hue all over. Nevertheless, it is here for just short few weeks.    

I found myself on many occasions saying that this whole experience feels like a free fall. I’m slowly beginning to realize that the emphasis is on free. The things I had been worrying about, things that had felt embarrassing, or annoying, or somehow worth my attention feel futile now. I’m free in that way. I’m also grieving and releasing decades (or centuries) of sorrow, sadness and pain. I wasn’t much into grief before. I can’t explain it. Sad things did happen and I’m a feeling person. And yet, I don’t think I’ve ever had taken the time (or invested effort) to truly grieve. It’s not fully conscious. I’m not always aware why I’m crying or what specific things I’m grieving. It doesn’t really matter. Mind can’t understand or process what’s going on here anyway. Mind is a fully 3D creature while I am not. There are other dimensions. I must admit that this journey has felt from early on as a fully spiritual experience. It’s a total, 24/7 kind of experience that holds a grip on your body, your mind, your thoughts and emotions. The kind that according to Richard Rohr is taking you to “the second half of life”. In Falling Upward, he observes: “By definition, authentic God experience is always ‘too much’!” I can attest to it.

Doing vs. being. For us, modern Western people, doing is the prevalent thing. We need to make a special, concerted effort to shift to the state of being—through yoga, meditation, or a spiritual practice. I find myself in the state of mostly being for the last month at least. I thought I was too paralyzed for any “doing,” frozen in place. I now realize that somehow, I switched from doing to being, and it may not be a bad thing. Typical advice for people going through chemo is to keep your routine as much as you can–your job, your hobby, your schedule. I’m sure it works for many people. I find it strangely irrelevant. I can’t hold on to what used to be because it’s gone. Maybe this whole process is here for that reason. It’s a transformation of sorts, a re-birth. If I’m truly honest, in the months before this ordeal began, I wasn’t really inspired but what I was doing. It had meaning and purpose for many years–I’m grateful for all the opportunities I had–but I just didn’t want to repeat more of the same. And I don’t know yet what the new thing will be. So I’m surrendering to fully being, as I’m forced to anyway.

P.S. The picture is of a wonderfully thoughtful card I received from one of my healers, wishing me to smoothly get to the other side of the treatment path. The card brought tears to my eyes as the picture of the lighthouse both on the outside and the inside feels incredibly appropriate. I should keep my eyes on it.