We are international
• about myeloma TEXT SIZE   

Fall 2005 Volume 6, Issue 6:
Patient Experience: One Day at a Time...for 18 Years
By Carole Levis
The most powerful tool in a cancer patient's arsenal is the mind—when your body is beaten down physically, you can push your mind to keep you strong mentally while you face the challenges life has given you.

I was born in Pennsylvania, and I have lived here all my life. I raised my daughter, Deborah, and son, Kelly, as a single parent. To support the family, I worked two jobs. During the day, I worked in an office. I would come home to have supper with my children, then head off to my second job as a banquet waitress. When I turned 38, I decided to go to cosmetology school and, when I completed the course of study, I got a part-time job doing that. Back then, things were really tough, but we managed to make it through.

In 1987, when I was 43 years old, I started experiencing severe pain in my shoulder blade. The pain was attributed to muscle spasms. But when I started having trouble turning my neck, and losing control over my arms and hands, I traveled to a neurosurgeon in Pittsburgh for an evaluation. On December 3, 1987, I was told that I had a plasmacytoma wrapped around my spinal cord at the C7 vertebra of the neck. I was given 5 years to live, a common statistic. That's when I said, "I don't live by statistics. I live by the hand of God."

I had never heard of multiple myeloma. There were no support groups in the small rural area where I lived. I felt very isolated, and had to gather information wherever I found it. But I never asked why—I only asked for the strength to carry me though the challenges I was facing. The night before the surgery to remove my tumor, the doctor warned me that I might be paralyzed after the procedure. But I was lucky and, after most of the tumor was successfully removed, I only needed to wear a neck brace for six weeks while undergoing radiation. I was able to achieve remission. That was a blessing.

In 1989, after about two years of remission, my oncologist recommended a procedure that he called my "insurance policy" in case the disease came back. I was definitely interested, but my insurance company would not cover bone marrow harvesting. My second husband and I fought and eventually prevailed in having the procedure covered by insurance. I had 50 holes drilled in each hip for a total of 100 aspirations.

In May of 1992, my second husband died in my arms of a heart attack. He was 55 years old. We had no idea that there was a problem with his heart. I brought him back once with CPR but then lost him again. In the ambulance, he came back once more but, by the time we arrived at the hospital, he had passed. It was a very traumatic time. Shortly thereafter, I started experiencing bone pain again, but the tests did not show any active disease. About two years later, in 1994, I bent over a bathtub and my pelvis fractured. After a total of 8 years in remission, I was facing aggressive myeloma. It was time to use my "insurance policy."

However, by this time, my bone marrow had been frozen for over 6 years—and frozen marrow was only known to last for 3 or 4 years!—so we were not certain if the marrow that would be transplanted could still do its job. After the transplant, I was in isolation for 25 days, facing a difficult recovery and an uncertain future. To make the most of my time during my hospitalization, I put my cosmetology skills to use, working on wigs for cancer patients. I also hosted a Superbowl party for the doctors and nurses at the hospital. I was too busy being sick to eat the pizza and chicken wings that I had brought in, but I was happy to see the staff enjoy themselves! It was a difficult time but I tried to make the best of it.

In January 1995, when it came time to have the second transplant, they had to drag me back kicking and screaming. I still hadn't yet recovered from the first transplant! But I was told that two transplants would be more beneficial and, eventually, I consented. The second transplant was much harder on me than the first. After 21 days in isolation, I came home from the cancer center only to find myself back at the local hospital, packed in ice to bring down a high fever. I vowed that if I would just be given the strength to make it through, I would give back of myself in any way I could. Within an hour, my fever broke, and I was home shortly thereafter.

Since then, I have been working on wigs for cancer patients. Helping women look good while battling cancer helps them feel more comfortable and less isolated. Every time I help someone with her hair and makeup, and I see a smile... that's a blessing to me. I also try to offer support on the phone and via email. Occasionally, I get requests from the cancer center to come in and talk with a patient who's having a hard time, and I am more than happy to help. Perhaps because I felt so alone when I was first diagnosed, I am absolutely obsessed with helping others.

Every day of my life consists of something that has to do with cancer. It's become a way of life. But the key word in that sentence is "LIFE." I look at my disease as an inconvenience. But that's not the way it's always been for me. I remember coming home one day, ripping off my wig, and just tossing it! The wig landed on the ceiling fan, and I laughed until tears ran down my cheeks. Another time, while I was on a date on a golf course, the wind grabbed my wig. I started chasing the wig as it flew and bounced all around the course. (In the meantime, my date was such a gentleman that he just kept hitting those balls like nothing happened.) After I finally caught the wig, I called the beauty shop to tell them the story. I started laughing, and everyone at the salon started howling with laughter. Sometimes you just have to find the humor in these things!

My second remission lasted for about 8 years, just like the first, but the myeloma relapsed once again in January of 2005. In May, I started four cycles of Doxil and VELCADE. I am now pain-free and my energy is slowly coming back. I have been fortunate to work with a team of wonderful doctors and nurses. But, from my experience, I would say that the most powerful tool in a cancer patient's arsenal is the mind—when your body is beaten down physically, you can push your mind to keep you strong mentally while you face the challenges life has given you.

Over the past 18 (almost 19!) years, I've been sliced, diced, hacked, whacked, chemo'd, and radiated so as to glow in the dark, yet I feel lucky and blessed in so many ways. When I was first diagnosed, my grandson was 4 years old, and my goal was to live long enough to see him graduate from high school. He is now in law school. When I was diagnosed, my granddaughter had not yet been born. She is now 10 years old, and my goal is to be around to see the woman she becomes!

When I found the IMF, I really wanted to attend one of its Patient & Family seminars, but there was never one close enough to me. So I became involved with the myeloma ListServ and joined the online chat group. This year, when a friend volunteered to drive me to the IMF meeting in Baltimore, I found myself in a room with over 200 others whose lives have been touched by myeloma. I am just a regular person, taking life one day at a time, so I was very honored to be asked to join the seminar's Patient Panel, and grateful for the opportunity to offer encouragement to so many patients who are trying to cope with grim statistics. In turn, the many wonderful people I met, both patients and seminar faculty, gave me great hope for a brighter future. There are so many strides being made in the field of myeloma that I look forward to the day when I can say, "I used to have a cancer called multiple myeloma."

Editor's Note: If you wish to contact Carole, she can be reached at 814-372-2428 or via email at meemmaw@webtv.net.

 related articles