May 03, 2006

My Cancer Journey (Round 2: 2002)

The day I got the diagnosis that my cancer had returned and spread to my bones, I went home on crutches, lost my balance, and broke my leg.

Cancer was the last thing on anyone’s mind, because my initial experience had been so (relatively) positive. In 1999, at age 39, I found a lump in my left breast. A small, stage1 tumor, it had no lymph node involvement. Treatment included a lumpectomy, 6 rounds of CMF chemotherapy and 6 weeks of radiation at Swedish Medical Center - Providence Campus’s Comprehensive Breast Center. Developing lymphedema in my affected arm was a constant reminder of breast cancer but I managed to cope.

Not quite four years later, I had been complaining of pain in my thigh for several weeks, and thought it might be from a sports injury. When physical therapy didn’t help, I saw an orthopedist. This doctor took an x-ray and suspected metastatic breast cancer.

Later that same day I was rushed to the hospital with a pathological fracture of my left femur. A bone scan revealed metastases to the bones in the back of my skull, sternum, spine and both femurs. I underwent an emergency hip pinning to repair the fracture and began taking femara (letrozole), an anti-hormonal breast cancer treatment. I also began receiving monthly infusions of aredia and then zometa (pamidronates) to strengthen my bones. Several weeks of radiation therapy to both femurs and my skull reduced pain from the metastases.

The recuperation from a hip pinning due to pathologic fracture is lengthy. In my case, almost 5 months passed before I was able to place enough weight on the injured leg to walk with a cane. Then I had the right hip pinned to prevent another fracture. I began to see a naturopathic physician to improve my overall health, who prescribed a number of vitamins and supplements.

It also turned out that a constant, nagging cough was probably a small metastasis in my lung.

During this time I experienced overwhelming distress at my cancer’s recurrence with metastatic disease. I cried buckets of tears with my husband, family, and friends. However, the support of those who love me enough to supply companionship and food helped me realize that I wasn’t dying today. Swedish Medical Center’s Providence Campus Comprehensive Breast Center’s staff psychiatrist, Dr. Judith Lipton, gave me new perspective on living with cancer (and better living through chemistry!). Writing in a journal, even for 15 minutes a day, helped me explore my feelings and find meaning in my cancer experience. A weekly support group for people with advanced cancer, monthly support group of young women with breast cancer, and on-line support of women living with “mets,” as we call it, brought me to new communities of people walking in the same shoes. Getting a service dog helped me navigate my “new normal.”

Today, 3.5 years after my mets diagnosis, I am (fortunately) still stable on aromatase inhibitors. I continue to receive a monthly infusion of zometa. I take numerous vitamins and supplements. I have little pain from the mets, but have been treated with additional radiation therapy on my right hip and both humerii. The cough disappeared almost immediately after beginning treatment. Scans indicate stable disease, but I live with the realities of advanced cancer on a daily basis.

During this time I experienced significant losses:
• Medical retirement from my profession as a fundraiser;
• Applying for and receiving Social Security Disability and the accompanying loss of income;
• Accepting that my husband and I would likely never become parents. (Five birth mothers chose to keep their babies after they were born. Because of my cancer we could not adopt from another country, and were denied participation in our state’s “foster-to-adopt” program.)

I also identified and achieved life goals:
• Wrote a will, medical directives and a living will, outlining my personal philosophy;
• Traveled with my husband to Paris to visit family and to Israel for a reunion;
• Rescued a cocker spaniel, which then became my service animal;
• Bought our first house;
• Identified opportunities for volunteer work in breast cancer patient advocacy.

My philosophy? “Dum vivimus, vivamus: while we live, let us live!” Life is precious, and in a very real sense, we all have the same amount of time -- today.

2 comments:

  1. Anonymous7:42 PM

    Great quote! Beth in MS

    ReplyDelete
  2. Anonymous11:43 AM

    Dear Jill,

    Here I am sitting in my comfortable chair in Canada, doing something I never imagined doing, that is reading with hunger and genuine interest the cancer experience story of another person, and I think to myself, me Shony, that Israeli born healthy and strong all my life, preoccupied with my passion for music and poetry and people and computer programming and web development, in my own mind the person who's mind never entered the realm of living with cancer... sitting here reading your blog with so much interest and personal identification.

    Indeed health was something I took for granted all my life and right up that day not long ago at the age of 57 when my beloved wife noticed an innocent bruise on my arm. Two more bruises appeared for no apparent reason and off to my doctor I went. To cut this story short, two weeks later we were sitting at the blood specialist doctor in the hospital receiving the results of my bone marrow sample test. It's called Hairy Cell leukemia and it was confirm beyond doubts to be the cause for my low blood counts.

    What was kind of supposed to follow would have been the turning of one's life upside down, but Jill, to this day I cannot explain this. I was hardly touched by the news in a negative way. Truly everyone around me, all the dear ones in my life seemed more touched and concerned than I was. For me there was something magical, and something that I realized was my true source of strength throughout my life and ever since I remember myself including the toughest war times I had to endure as a young man. Some understanding between my mind and my body, some knowledge of my own body and unshakable trust in its good health mixed with my knowledge of how well I took care of it all my life and how I never abused it. All of which translated to an almost unexplained source of comfort, calm and empowerment.

    True, I am lucky in that mine is the slowest growing and most treatable form of Leukemia, but non the less, what this revelation and experience did to me was to add something to my life, not take away from it, and by add I mean something good. Good in my own personal inner standing with myself and my life and also the world I live in, and good with my opening to making connection with a whole new community, this time not a community of musicians or computer professionals, but a community of others who were touched by this health "thing" that makes us all look at life similarly differently and identify with each other through something that one has to experience to be "in".

    And here is where I was identifying with your personal story so much, Jill. The turning of your personal experience energy to a positive productive one by telling the world and sharing your experience, the finding of a worthy mission and just cause to create something meaningful out of what happened to us. You have done it with your blog and I have done it with MyExp website. Both are places where people can be helped through learning about the experience of others. While the website that I developed and recently launched is not dedicated to Cancer only, it started as a unique website that allows any personal experience that may be valuable for others, to be shared freely and easily, and my own cancer experience was my own driving force and inspiration.

    Jill, I would be honored if you would share your story at MyExp for the world to find. Any cancer story is one that is very close to my heart now, and if anyone active in your circle of friends would be interested in contributing her/his personal story at MyExp or telling others about this place to find and share similar experiences, I would be so happy.

    The site is at:

    http://www.myexp.org

    It encourages short concise stories, and contributions are accepted free and are very easy to enter, there is no need to even registered an account.

    Wishing you all the best with your health, and I would love to hear back from you.

    Shony Bar-Elan
    http://www.shonymusica.com

    ReplyDelete

About Me

My Photo
I dance with cancer. Oy!