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As Erica Rimlinger tells it
I’m not denying it, I know that having multiple myeloma is serious and I know what I should do, but choosing a hopeful mindset helps me move forward.
My experience with cancer began when I had a consultation with my GP and suspected that I might have a food allergy. The blood tests and other tests he ordered that day gave unclear results about my stomach problems, but more comprehensive blood tests saved my life.
Most of the blood test results were normal, except for one number that was well outside the normal ranges. I asked my doctor but she didn’t seem to care. Even though I trust her, I pushed for more blood tests to find out what was happening.
I did some research online and found that there aren’t many reasons why this number would produce high results on a blood test. This 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 has surprises, but I have always remained calm.
If you read information about multiple myeloma on the Internet, you will learn that the average survival rate for patients is three to five years. I don’t usually let fear guide my actions, so I immediately made an appointment with a multiple myeloma specialist.
At that first appointment, I received my official diagnosis and my first hope: asymptomatic high-risk multiple myeloma. The term “asymptomatic” means that the cancer had not yet damaged my bones and organs, even though it was in the cells of my serum. We recognized it in time. The term “high risk” means that without treatment you would likely progress over the next two years.
I started four months of chemotherapy, a combination of infusions and tablets. Fortunately, I tolerated the treatment well with minimal side effects.
When I shared the news of my cancer with my family and friends, I advised them not to search for information about the disease on the Internet. Even my doctors agreed that the information on the Internet was lagging behind when it came to new and emerging treatment options. There are many new treatment options for multiple myeloma and because there are so many options, I wanted my loved ones to focus on hope instead of fear based on outdated statistics.
At the same time, we were still living in the shadow of the Covid pandemic and were extremely cautious about going out due to my weakened immune system. These precautions would be crucial in the next phase of my treatment plan: stem cell transplantation. Although I was afraid of the transplant, which required a long and intense hospital stay, I was determined to have it so I could get back to what mattered most: living my life.
I spent two weeks in the hospital. I received high doses of chemotherapy that destroyed my existing bone marrow and also my entire immune system. All of my childhood vaccinations have been eliminated (I’ve spent the last two years getting vaccinated again for children, such as polio, measles and hepatitis. I’m not done yet!)
After the myeloma cells in my blood were destroyed, they added my stem cells (which were treated, harvested, and pre-frozen using a procedure called apheresis) back into my blood in the hope that they would regenerate without cancer.
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 watch TV: I only slept for 14 days. Seven days after my transplant, my white blood cells bottomed out and then began to rise. I would be allowed to leave the hospital when my white blood cells reached a safe level.
My husband Mitch, as well as my family and friends, have been extremely supportive throughout the entire process. Mitch took on the heavy housework and supported me. I returned home full of love and my dog went crazy with joy when he saw me.
2023
The great support of my family and friends allowed me to focus on healing. The endless list of loved ones bringing me meals, surprises at the door, incessant conversations to check on me, people shaving their heads in solidarity, visits from people who lived in other cities, all made me feel very loved and had a lot of support, which cleared my mind so I could move forward positively.
During my recovery, five months had already passed since treatment, but this was no vacation. I spent the first three weeks on the couch, unable to move and barely eating. After a week at home, I was so fed up with the illness that I decided to get up and move. I couldn’t tolerate or digest the food, but I found gummy bears in the kitchen and ate some. The candy gave me enough energy to move around my home and gave me the push I needed to eat, walk, work, and live again.
Keirney with her husband and three children, six weeks after the stem cell transplant, 2023
The next phase of my experimental treatment consisted of additional infusions, which I again tolerated well and ultimately achieved a “complete response.” This means 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.
They take my blood for tests every three months and for the last three visits my blood tests have shown excellent results. He was still taking strong cancer medication at home. Lately I’ve been wondering whether I should continue treatment or give my body a rest. Stopping this treatment carries the risk of the cancer coming back more quickly and losing the possibility of using this medicine again: treatments cannot be repeated. Even though there are still many treatment options available to me and new treatment options are constantly being developed, I don’t want to rule out all options too quickly. This treatment works and the side effects are minimal. Right now I probably won’t take that risk.
I wouldn’t call cancer a blessing, but it has brought blessings and new perspectives. I feel joy most in small moments: when I watch the snow falling outside my window, when I walk the dog on a quiet afternoon, and when I wake 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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