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March is Multiple Myeloma Awareness Month.
As Erica Rimlinger tells it
I’m not denying it – I know that having multiple myeloma is serious and I know what I need to do – but choosing a hopeful attitude helps me move forward.
My cancer journey started when I visited my GP thinking I might have a food allergy. The blood work and tests she ordered that day showed no clear evidence of my stomach problems, but getting a blood test might have saved my life.
Most of the blood test results looked good – except for one number that was well outside the normal range. I asked my doctor about it and she didn’t seem concerned. Although I trust her, I pushed for more blood tests to investigate further.
In my online research, I found that there aren’t many reasons for the level to show up high on a blood test. Most of the time, the disease only occurred in multiple myeloma, a blood cancer for which there is no cure.
I don’t tend to panic. As a mother of three grown boys, I know that life has its share of surprises, but I have always kept calm.
If you read about multiple myeloma online, you’ll learn that it has an average survival rate of three to five years. It’s not in my nature to lose control of my fears, so I immediately made an appointment with a multiple myeloma specialist.
At that first visit, I received both my official diagnosis and my first hope: smoldering, high-risk multiple myeloma. “Smoldering” meant that the cancer had not yet damaged my bones and organs, even though it was in my plasma cells. We recognized it early on. “High risk” meant that without treatment there was a high probability of progression within two years.
I began four months of chemotherapy, a combination of infusions and tablets. Fortunately, I tolerated the treatment well with minimal side effects.
When I shared the cancer news with family and friends, I advised them not to look it up on the Internet. Even my doctors agreed that online information lags far behind new and emerging treatment options. There are so many new treatment options for multiple myeloma and with many options available, I wanted my loved ones to focus on hope instead of fear and outdated statistics.
At the time, we were still living in the long shadow of Covid, so we were extra cautious about going out due to my weakened immune system. These precautions would be crucial during the next phase of my treatment plan: stem cell transplantation. While I dreaded the transplant, which required a long, intensive hospital stay, I was determined to get through it so I could move on to the more important work of my life.
I spent two weeks in the hospital. I received high-dose chemotherapy that destroyed my existing bone marrow and affected my entire immune system. All my childhood vaccinations were gone. (I’ve spent the last two years repeating childhood vaccinations for polio, measles and hepatitis. I’m still not done!)
Once the myeloma cells in my blood were destroyed, they put my stem cells (which had previously been treated with a procedure called apheresis, collected and frozen) back into my blood in the hope that they would regenerate cancer-free.
2023
During those weeks in the transplant ward, I lost 18 pounds in 20 days and lost all of my hair. I didn’t read or even watch TV: I only slept for 14 days. Seven days after the transplant, my white blood cells bottomed out and then began to rise. I was allowed to leave the hospital when the white blood cells reached a safe level.
My husband Mitch and my family and friends have been incredibly supportive through all of this. Mitch took on all the hard work of running our household and supporting me. I returned home with so much love and my dog was overjoyed when he saw me.
2023
Great support from family and friends allowed me to focus on healing. The endless crowd of loved ones bringing meals, surprises at the door, non-stop check-ins, shaved heads in solidarity, out-of-town stays – all made me feel deeply loved and supported, clearing my mind and allowing for positive growth.
I’ve now had five months off treatment while I recovered, but it wasn’t a vacation. I spent the first three weeks on the couch, unable to move and barely eating. After a week at home, I was so sick of being sick that I was determined to get up and move. I couldn’t stand the food or keep it down, but I found Swedish fish in the kitchen and ate a few. The candy gave me just enough energy to get around the house and gave me the push I needed to eat, walk, work, and live again.
Keirney with her husband and three sons, six weeks after the stem cell transplant, 2023
The next phase of my treatment trial consisted of further infusions, which again I tolerated well and ultimately achieved a “complete response”. This meant there were no signs of cancer in my body. When it comes to multiple myeloma, many doctors don’t use the term “remission” because there is no cure yet.
I have bloodwork done every three months, and for the last three visits my lab results have looked great. I still take a strong cancer pill at home. Lately I’ve been wondering whether I should stick with this treatment or give my body a break. Stopping this treatment carries the risk of the cancer returning more quickly and the loss of the ability to use this medication again: you cannot repeat the treatments. Even though there are still numerous treatment options available to me and new treatment options are constantly being introduced, I don’t want to go through all the options too quickly. This treatment works and side effects are minimal. I probably won’t roll the dice right now.
I wouldn’t call cancer a blessing, but it has given me blessings and perspective. I feel the joy more in the little moments: watching the snow fall outside my window, walking the dog on a quiet afternoon, and waking up every morning knowing that today I can choose hope.
This educational resource was created with the support of an educational grant from Johnson & Johnson.
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Our “Real Women, Real Stories” are the authentic experiences of real-life women. The views, opinions and experiences shared in these stories are not endorsed by HealthyWomen and do not necessarily reflect the official policy or position of HealthyWomen.
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