May 03, 2006

My Cancer Journey (Round 1: 1999)

This is the story of how I found my cancer, got through treatment, and came out the other side --

One night in November 1998, I decided it was time to do a breast self-check. I wasn’t in the habit of checking every month, and I don’t really know what prompted me to check that night, but the lump I found was immediately detectable to my untrained hand. It felt like a small pea under my skin.

I called my doctor right away, and she arranged for me to have a mammogram upon returning from our planned vacation. While we were away, I checked the lump daily. It didn’t changed.

I had the mammogram in January 1999. The technician said it was hard to see the lump on the x-ray, so she wanted to conduct a biopsy. When I asked the doctor for her opinion, she told me it was most likely malignant.

The mammogram and biopsy took place on a Friday. Monday was Martin Luther King Day. As you can imagine, it was a long weekend! On Tuesday a call confirmed my fears – the lump was cancerous.

I met with a surgeon and oncologist at the Providence Breast Center. They outlined all the treatment options. It was hard for me to process all this new information. There were so many things to learn. Both doctors wanted me to make the decision, and I wanted to make an informed decision.

Since breast cancer runs in my family, I ended up choosing the least drastic, least invasive options. I wanted to have some choices in the event of a future encounter with cancer. I chose a lumpectomy with node dissection, followed by 6 rounds of chemotherapy and 7 weeks of radiation. Surgery took place February 1, 1999, chemo lasted into August, and I was finished with radiation by Sukkot.

I was lucky – during the surgery, they found that the tumor was small and had not spread into the lymph nodes. However, the drain left in my body became infected, the infection did not respond to antibiotics, and I had to be hospitalized. I had emergency surgery and spent four days in intensive care and a week in the hospital recovering from toxic shock syndrome.

Fortunately, I had limited side effects from the chemotherapy -- no hair loss (I didn’t take Adriamycin), very little nausea, and some weight gain (an unfortunate side effect for women). I did begin early onset of menopause, which is a common, but seldom mentioned, side effect. The symptoms of menopause continue to come and go, and I’d be happy to tell you my tricks for living with hot flashes!

In order to make the administration of the chemo drugs easier, I had a catheter implanted in my chest. This meant I didn’t have to get stuck with a needle every time I went for chemo. However, the line became infected and I had to stop chemotherapy for several weeks while we waited for the infection to clear up.

During this time we went on a family vacation. You should have seen me, dragging my bag of antibiotics (which had to be kept chilled), and clearing the line in the airports, at a baseball game, and in the hotel room. It was quite a trip!

During the early summer, I developed signs of lymphedema. Lymphedema, a side effect of node dissection, can occur in as many as 30% of breast cancer patients. It can set in at any time, from months to many years after surgery.

In my case, while leaning on a railing only a few months after my surgery, I noticed an indentation in my arm. This is an indication of stage 2 lymphedema. Since lymphedema is a life-long condition, I decided to seek treatment right away, before it got worse. For seven weeks I wore compression bandages for 20 - 22 hours a day; received special massage daily called manual lymphatic drainage; and was eventually fitted for a compression sleeve. I wear this sleeve every single day of my life, do certain exercises daily, and must take special precautions when I travel by air. I monitor my lymphedema every day by looking for signs of infection or an increase in my arm’s size.

Radiation treatment was, for me, the easiest part of the whole cancer experience. I went to the hospital every day for seven weeks. The radiation treatments lasted for only a few minutes, and I could go on with my life. I developed quite a suntan on my left breast, which took almost a year to fade.

Throughout my entire treatment, I received wonderful care from the physicians, nurses and technicians at Providence Medical Center. With only one exception, each person treated me as though I was a daughter or sister.

I worked part-time throughout treatment, because for me it was better to be busy and occupied, and I’m proud to say that in 1999, the NW AIDS Walk again raised about a million dollars.

Although I didn’t take part in a cancer support group while I was in treatment, I did receive wonderful support from family and friends. My sister came to visit from New Jersey when I was recovering from toxic shock syndrome, and left a freezer full of chicken soup and delicious food. My parents came for both the cancer surgery and my first chemotherapy treatment. You should have seen my dad exploring the PCC and marveling at the array of Northwest groceries. Friends provided ongoing support – they cooked meals, visited, and generally kept my spirits up. The Mitzvah Corps of our synagogue, Congregation Beth Shalom, brought dinners to our house. I also benefited from long conversations with acquaintances who were in treatment at about the same time I was.

I now participate in a lymphedema support group through Cancer Lifeline. Knowing other women living with this condition has made things easier for me. I still get frustrated when I can’t move my arm as easily as I’d like, or when I want to wear a short-sleeved shirt and feel conspicuous about the compression sleeve. My loving husband gives me a manual lymphatic drainage massage very night.

What can you learn from my cancer experience?

1. Check your breasts every month. Make it part of your regular schedule, like getting a haircut. Check on the first day of the month, or on the last day of your menstrual period, but check regularly! Make sure you have a base line mammogram at age 35, and that you get one every year after age 40. It’s worth the temporary discomfort to catch a lump early.

2. If you have a lump, or if a regular mammogram reveals a lump, go for treatment right away. Although I’m glad we took that vacation, I wouldn’t have waited another week for the diagnosis.

3. If you learn that you have cancer, don’t despair. There are only two choices with cancer, and I think deciding to die is a bad idea. Fight your cancer with every tool at your disposal. My chemotherapy nurse once told me that since I thought of chemo as medicine, my body tolerated it better than if I thought of it as poison. When people offer to pray for you, accept graciously. Believe in the efficacy of prayer, no matter the source.

4. If you decide to have surgery, minimize your risk of lymphedema and request sentinel node dissection. My only regret is that Providence began using this surgical procedure, which removes a single lymph node for testing, exactly one month after my lumpectomy.

5. Remember that you’re not alone. Cancer Lifeline, the American Cancer Society, and many other local and national organizations can match you with a survivor whose experience parallels your own. As a dear friend told me, if you don’t tell people what’s wrong, how can they help you? You don’t have to fight cancer alone.

1 comment:

  1. Anonymous3:00 AM

    Hi Jill!

    I read your story this morning. I thought that it was well written and informative. Keep writing!

    I was treated for breast cancer in 2000 and my sister got it a couple of years later, and now she has mets to the liver and bone. We are both in our 60s. I am on the mets list, but so far, she hasn't joined.

    Best always, Nancy aka Shira