Weaving my Life Back Together
Inga Marie Carmel
My story began ten days into the new millennium, when I found a lump in my breast while showering. My own personal Y2K apocalypse. My first thought was, ‘Well, if it’s cancer it won’t be so bad for me, I’ll be dead, but what about my family, what about Steve and Jonas. And how will I tell Mom and Dad.’
It turned out to be invasive breast cancer. Jonas was 2-1/2, and still nursing. I had to wean him before I started chemo. I was treated with an initial lumpectomy, sentinel node dissection, lymph node dissection, chemotherapy, and radiation. I "graduated" from that treatment in November of 2000. I subsequently had a local, non-invasive (DCIS) recurrence in late summer of 2001, which was discovered by a routine mammogram and treated with a mastectomy, and discovered liver metastasis in June of 2002. The metastasis was found by a Cancer Antigen 27.29 blood test, and confirmed with a CT scan and liver biopsy. I’ll never forget that call from my oncologist, telling me that my liver had cancer in it. When I asked him what kind of time frame I had, he told me… ‘Well, let me put it this way, most women in your situation are not around 2 years later.’ I told him I knew an 11-year survivor of liver metastasis, and so I knew it was possible. Then I went to my dance class, I came late… when I got there they were playing a song with the lyric ‘I’m asking why?’
I am Her2- positive and started Herceptin almost immediately upon finding the liver metastasis. Then I went on vacation.
My family had already planned a 3-week trip to the East Coast. We visited my parents, and then went to a family reunion and wedding with my husband Steve’s family up at Maine. The place we were was called Quisisana, which means "a place where one heals oneself". How true that turned out to be.
I’ve been a tai-chi practitioner for many years. In the traditional Chinese medicine system, which Tai chi is a part of, the liver is considered a ‘wood element’ organ. I’ve also been a gardener and landscaper for many years, and feel a close affinity with the natural world. And there were lots of trees in Maine. I asked them for help. Sounds crazy, but it helped me cope. Every day I did a tai chi set, and a liver qigong, tried to visualize the cancer leaving my body (as white butterflies)… actually physically tried to pull it from my body, and asked the trees for help. A ‘gong’ is something you do for 100 days straight, usually a training thing. I started a 1,000 day gong, doing a tai chi set every day for almost 3 years.
When we came home I began a weekly regimen of Herceptin and Navelbine; eventually we had to change to every other week as my blood counts worsened from the Navelbine. But when I had a CT scan, 2 months after starting treatment, it showed that I had incredible tumor shrinkage from what had been 'numerous hepatic lesions.' The largest tumor had been 2cm, it shrank to 5mm. The smaller lesions resolved completely. I continued treatment and in spring of 2004, 2 years after beginning my treatment, my CT scan report said 'I can no longer definitely identify metastasis.' Whew!
I live now, four and a half years later, in a strange world, with no detectable cancer but in continuous treatment—still Navelbine and Herceptin. I’m a permanent resident in Cancerland. I feel incredibly lucky to have made it this long, but the treatments are wearing on my body. I have some neuropathy and I’m aging a little faster than I think I should (but then don’t most people?). My joints ache. Sometimes my blood counts or iron level drops and I lose all my energy, but I look healthy to most people. I have my hair. That's not the most important thing in the world, but it's nice to be incognito sometimes, not always looking like a cancer patient. But I have this tether: every other week I have to show up at the oncologist and get my meds. And yet I’m healthy… but I’m not… but I am, but……..
Throughout this cancer experience, Steve and I worked hard to make having a mom with cancer a normal thing for our son. We didn’t want Jonas to be traumatized by it. And somehow it has worked. I realized just how well when he wrote in a paper for school in 3rd grade that his father is a college professor and ‘my mother has breast cancer’. It’s just my job.
When I first found out about the metastasis, one of the worst things for me was the math. Jonas was almost 5. My doctor had said two years. Five and two make… 7. There was a chance I wouldn’t see our little boy past 7. That’s barely second grade. That really got to me. I decided I was going to his college graduation, AND that he needed to take a year to mess around after his sophomore year. I was going to make it at least another 20 years. I did visualizations of Jonas in a cap and gown, coming up to me and giving me a hug and saying, ‘Mom, we made it.’
My family has been so important through all this, I feel buoyed by their support and love, it feels as though this is what is keeping me alive. From Steve telling me how beautiful I looked the day I first lost all my hair (and felt like an egg), to insisting that we continue to make long-term plans, despite my prognosis . I guess he really meant the ‘in sickness and health’ part of our wedding vows!
I recently started weaving again, something I did when I was in my 20’s, something my mother and grandmother both did. It feels good, it’s moving on a bit. This spring I turn 50, and in June it will be 5 years survival with this metastasis. I’m still thankful I’ve made it this far, still very aware that ‘it’ may come back again. But maybe I’m learning to live with this uncertainty, and weaving the parts of my life back together again.