When faced with multiple myeloma, I chose hope over fear

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As reported in Erica Limlinger

I am not in denial, I know multiple myeloma is serious and I know what I need to do, but choosing a mindset of hope is helping me move forward.

My experience with cancer began with a consultation with my doctor, thinking I might have a food allergy. The blood and other tests he requested that day gave vague results about my stomach issues, but a more comprehensive blood test saved my life.

The blood test results were mostly okay except for one number that was way outside the normal range. I asked the doctor, but he didn’t seem to care. Trusting her, I pushed for more blood tests to investigate what was going on.

After searching online, I found that there was little reason for those numbers to show high results on a blood test. It is almost always associated with multiple myeloma, a blood cancer for which there is no known cure.

I don’t tend to panic. As a mother of three adult children, I know that life throws the unexpected, but I have always remained calm.

If you read about multiple myeloma on the Internet, you will see that the average survival rate is 3 to 5 years. Because I don’t usually let fear guide my steps, I immediately scheduled a consultation with a multiple myeloma specialist.

At that first appointment, I received an official diagnosis and my first hope: asymptomatic high-risk multiple myeloma. The term “asymptomatic” means that the cancer has not yet damaged bones and organs, even though it was present in the blood cells. We detected it at the right time. The term “high risk” means that the disease is likely to progress over the next two years without any treatment.

I started with a four-month course of chemotherapy, a mixture of injections and pills. Fortunately, the treatment was tolerated well with minimal side effects.

When I told my family and friends about my cancer, they advised me not to search for information about the disease on the Internet. Even my doctors agreed that information on the Internet was lagging when it came to new and emerging treatment options. With so many new treatments for multiple myeloma and so many options to choose from, I wanted my loved ones to focus on hope instead of the fear caused by old statistics.

At the same time, we were still living under the shadow of COVID-19, so our immune systems were weakened and we were very careful when going out. These precautions are very important in the next step of my treatment plan: a stem cell transplant. Although I was afraid of transplant surgery, which would require a long and difficult hospital stay, I wanted it so that I could do what was most important: my life.

I spent two weeks in the hospital. I underwent high dose chemotherapy which eliminated existing bone marrow and wiped out my entire immune system. I received all my childhood vaccines. (For the past two years, I’ve been re-vaccinating my childhood vaccines for polio, measles, hepatitis, etc. I’m not done yet!)

Once the myeloma cells in my blood were destroyed, they reinserted my stem cells (processed, harvested and pre-frozen through a procedure called apheresis) into my blood in the hope that they would regrow without cancer.

2023

During those few weeks in the transplant room, I lost 18 pounds in 20 days and lost all my hair. I didn’t read books or watch TV. I slept for 14 days. Seven days after transplant, white blood cell counts reached their lowest point and then began to increase. Once your white blood cells reach a safe level, you are allowed to leave the hospital.

My husband Mitch, family, and friends have been so supportive throughout this entire process. Mitch took on the difficult chores and supported me. I came home full of love, and my dog ​​went crazy with joy when he saw me.

2023

Thanks to the incredible support of my family and friends, I was able to focus on healing. The endless list of loved ones who brought me meals, surprises at the door, constant conversations to check on me, people shaving their heads to show solidarity, visits from people who lived in other cities, all of this made me feel very loved and very supported, allowing me to clear my mind and move forward positively.

It’s been five months already while I’ve been receiving treatment and recovering, but it hasn’t been a vacation. For the first three weeks, I was lying on the couch, unable to move and barely eating. After a week at home, I was so tired that I decided to get up and move. I couldn’t tolerate or assimilate food, but I found some sweet gum in the kitchen and ate some. Sweets gave me enough energy to move around the house, the drive I needed to eat, walk, work, and live again.

Kearney with her husband and three children, six weeks after stem cell transplant, 2023

The next step in my experimental treatment was more infusions, which I again tolerated well and eventually achieved a “complete response.” This means there is no evidence of cancer in my body. Because there is still no cure for multiple myeloma, many doctors do not use the term “remission.”

They draw blood for tests every three months, and the last three visits have yielded very good results. He still took strong oncological drugs at home. Recently, I have been wondering whether I should continue treatment or let my body rest. If you stop this treatment, you risk the cancer coming back more quickly and losing the option to use this medicine again. Treatment is not repeatable. Although there are still many treatments available and new ones continue to be developed, you don’t want to rule out all options too quickly. This treatment is effective and has minimal side effects. As of now, I probably won’t take that risk.

I wouldn’t call cancer a blessing, but it has brought blessings and a new perspective. I find the greatest joy in the little moments. Watching the snow fall outside my window, walking my dog ​​on a quiet afternoon, waking up every morning and realizing that I can choose hope today.

This educational material was produced with the support of . Educational grants from Johnson & Johnson.

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