A C-word Journey: Second Installment

“It’s just hair. It will grow back.” I’m suffocated by my own silence. I don’t talk to people, mostly text. It feels like using my voice requires too much energy these days. We went to a consultation at Memorial Sloan-Kettering on May 1. The doctor there strongly suggested adding chemo to the follow-up treatment. I said I didn’t understand, it was determined as stage 1. The doctor explained that “the cells look a bit too aggressive under the microscope,” and then proceeded with two pretty powerful images. She said: “Imagine you are buying a house. You know the zip code and it’s really good. But it doesn’t tell you much about the specific house, does it? So, your zip code is great but the house needs some work.” Then she added: “Imagine you weeded your garden and it looks great. You really want to make sure there are no weed seeds left.”

The appointment had been delayed for two weeks; they were waiting for my oncotype test, the appraisal of my “house.” For some reason, the doctor didn’t have it, I began to freak out. Her assistant went to get it—in those 15 minutes I watched as the oncologist studied the pathology reports. No statistics, just biology–my biology–working towards a decision based purely on her professional intuition. When we got the oncotype, it confirmed what she already knew. “Will I lose my hair?” was my first question. “Yes, you will lose your hair.”

I’m a natural red head, the only one in the family that we know of. I was told my hair was auburn goldish when I was little and gradually became auburn copper. Both my maternal grandmother and my mother went grey very young, so I considered myself fortunate not to have to color my hair till I turned 40. The color my wonderful hairstylist came up with for me is a couple of shades lighter than my original one, more like strawberry blonde. In school I was teased for being a red head; as I became older, the color was something everybody commented on. People noticed my hair before they saw me. Prior to my first immigration, when the Israeli sun had a go at it, it was long and full. My nicknames in the family swirled around the red/ginger colors. It’s safe to say that it’s been a huge part of my identity. For the last 45 years I had it a shoulder length or longer. “It’s just hair. It will grow back”. Millions of women go through this traumatic experience. Hair means a lot in our culture in general and for women in particular. I’m not claiming any uniqueness, just explaining the depth of my personal devastation. “You are more than your hair.” I know that, at some level. At another, I just can’t imagine going completely bald, even temporarily.

No, it’s not just about hair. I’m scared of other side effects of these four chemo treatments. It also didn’t escape my attention that adding chemo cannot guarantee permanent remission. My local oncologist stated that the goal of chemo, radiation and estrogen suppressants is in fact permanent remission, but it just can’t be guaranteed. When I first received the diagnosis, especially during the first month when we thought it was a stage zero situation, I realized I was entering the cancer land but, somehow, I was hoping to stay on the margins. With upcoming chemo and losing my hair, I’m going right into the middle. My wonderfully perceptive son suggested that because it is a preventative treatment, consider it a “touristy” situation: just visiting, not staying. I’m praying for that.

I was supposed to start chemo at the end of May. They inserted a port surgically three days prior. Thirty-six hours later I ended up in the ER with obstruction of the small intestine. Three days in the hospital, with a tube through my nose for 36 hours. First time ever, no clear reason why such a thing could happen. Thankfully, it was resolved on its own and I didn’t need any additional procedures. I think I couldn’t “digest” my situation, literally couldn’t stomach going through chemo. I must admit that despite an utterly uncomfortable situation, there was a degree of release and relief in being in a hospital. I no longer had to make decisions– about medications, appointments or anything else. I surrendered. There was some solace in it. The doctors said that walking really helps the body to resume its normal functioning. So I tried to walk as much as I could, strolling the hallway in my hospital socks, tube in my nose. That was a powerful exercise in mindfulness. Physical discomfort leaves no space for the mind to tell stories, to worry, to compare before and after. It is literally in-breath, out-breath; being in the now.

Anxiety, fear and grief. I wrote about it in my previous piece, but it intensified since May 1. There is more to grieve, starting with losing my innocence of sorts, when the serious illnesses were kept at arm length. It’s happening to other people. Not anymore. I had for the first time in my life such an intense bout of insomnia that in the hospital I had to start sleeping pills. Just four months ago I could easily sleep for 8-9 hours straight. I think I’ve been on more medications this past month than in the previous fifty years combined. Stress caused a bunch of other flare ups. I lost 18 pounds, before even starting chemo. I’m barely leaving the house. Nothing should prevent me from doing it, I just don’t have the energy. A few friends are visiting me at home. I’m only going out for appointments. Doctors, acupuncture, massage. I don’t know how to do the things I did before. I don’t know how to enjoy things I enjoyed before. Everything feels different. It’s a total experience and it took over. Maybe I let it take over. Either way I don’t seem to know how to “rise above it.”  It’s like a gigantic transformation of the self. What I used to be prior January 27 is no longer here. What I will become after that or through this experience hasn’t happened yet (and it’s really hard to imagine “after” right now). I’m in transition. It reminds me of the courses in cultural anthropology I took during my undergraduate degree; it’s a prolonged rite of passage. It has all the attributes, including losing hair. In many cultures this is a significant aspect of transition. In ultra-orthodox Judaism, brides shave their hair before marriage. In many cultures warriors shave their heads, in some militaries it’s a part of the draft process. I look like a warrior now. Up to this point, the only scar I had was about a 1.5-inch remainder of my back surgery. I gained three scars in the last two months: the first one from a lumpectomy under my left breast, the second where they took two lymph nodes and the third to insert the port.

May is impossibly beautiful around here. Our yard is in full bloom. Lilac this year was abundant. The old purple bush and the new French lilac bushes produced tons of flowers and its very distinct, sweet with a note of bitterness, fragrance. The white lilac is simply sweet. The bunches of late daffodils, white and yellow, showed up in the front yard. My favorite smell in the world, lily-of-the-valley, covered the space with their green leaves and little white bells. No wonder the royal brides include them in their wedding bouquets. Every year I’m waiting for them to reappear. This year all these flowers witnessed my grief. It was almost too painful to see the things I love but through the screen (or the fog) of my cancer diagnosis and the anticipation of chemo. I had to force myself to make a bouquet of lily-of-the-valley for my living room. We have a special crystal silver vase for them, passed down at least three generations in the family. Our roses are beginning to bloom and per tradition, pink and burgundy peonies are celebrating my husband. While peonies may be blooming for a few days already in the neighborhood, ours patiently wait till the day before my husband’s birthday. Life goes on.

The gratitude list:

• The most caring and loving husband and son.
• This situation is very hard for my parents, but they are handling it really well while being supportive.
• Since this ordeal began, I received four beautiful and meaningful bracelets from four dear friends.
• Lots and lots of flowers from very dear people.
• Through a chain of miraculous events, my best friend connected me with a wonderful therapist who specializes in clients going through cancer. It’s been really helpful.
• My amazing hairstylist accompanied me twice to the wig appointments and is going to cut my hair short at home.
• When I stayed at the hospital, every nurse and nurse assistant went above and beyond trying to alleviate my discomfort.