Bone Metastases, Henna Head, & the Senses

By Christine Grundoon

I was first diagnosed with cancer six years ago, at 41. My cancer was Stage 3C, with lymph nodes involved (I found it myself from an enlarged lymph node), under my collar-bone, very aggressive. My first recurrence was three years later; since then, I've been through three more rounds of chemotherapy. We’ve dealt with two brain tumors and, most recently, bone metastases. The cells have been decent enough to stay out of my liver and lungs, so far. Total: one mastectomy, seven weeks of daily radiation, two gamma knife surgeries, and four rounds of chemo-therapy. Nine cancer treatments, not including surgery to install a Port-o-cath. Twice. Blood draws. MRIs. CT scans. Blah, blah, blah.

Seriously, every woman who is coping with metastatic cancer in any form is wonderful, brave, an Amazon and a badass. Guts, grace, and grit. The hard truth is that this cancer is progressing much faster, and in a worse way, than my husband and I had hoped. I only finished my last round of chemotherapy in June 2010. Since then, I’ve managed to develop one brain metastasis and a host of bone mets: spine, one rib, and hip-bones.

I am more freaked out by bone metastases than by the brain stuff. This is probably because the brain tumors are old, and the bone mets are new, although I do worry about my personality or ability to think changing. Even more, I fear being trapped in a body that’s completely failed. A wheelchair. A broken hip. Not being able to draw, to dance, to walk...I know it’s trite, but I don’t really fear death, I fear a cage. I've told my husband, if I am alive but non-responsive, do not wait a month. Wait three days. Imagine I am trapped inside, and all I want is for you to let me go. I know, harsh. We don't talk about this, in our Happy Face Culture, but think about it. What do you really fear? Have you communicated this to your loved ones? If not, DO.

On the up side, someone recently asked me a really good question: what helps endure the cancer and treatment? My first answer was: touch. Part of the challenge of cancer treatment is constant physical suffering. Fighting pain is exhausting and my body turns into a rag bag. Not only from pain, but also from Other Unpleasantness: reflux, nausea, skin lesions…wounds that won’t heal. Digestive malfunctions that I will let you imagine for yourselves. Swollen feet and lymphedema (which is pain and swelling in my right hand and arm). Neuropathy in my feet, which in English means constant pins and needles or, when it gets bad, burning. As in, I will happily put my feet in a bucket of ice for 20 minutes if it will get me two hours of relief or let me fall asleep. Trivial each in their own, possibly. When you are enduring most of them all the time, and expect all to get worse over time, not so trivial.

So it’s easy to forget that a body can feel pleasure as well as pain and discomfort. This is where feeding the senses comes in: smell, taste, touch. Cooking with fresh basil. Trying to differentiate a champagne’s “melon” overtones from its “citrus” ones. Today, my daughter henna-ed and massaged my baldy old head — the sort of thing that puts me into a happy semi-coma.  That’s my advice for dealing with a chronic disease: figure out what feels good. Then go for it. A foot massage, a head rub, a wonderful dish, a glass of champagne. Feed the upside of that bodacious bod.

For More Information on Advanced Cancer 

Many women with advanced cancer feel isolated, especially from others with less-advanced cancer. Women with advanced breast cancer have found these resources helpful: Advanced Breast Cancer:  A Guide to Living with Metastatic Disease, by Musa Mayer; the SHARE hotline, 866.891.2392; and www.Mbcnetwork.org.

Christine Grundoon is a historic landscape architect with a life interest in connecting the historical use of land to modern ecological design. She works for the state of California, doing large-scale restoration, planting design, and grant-writing.