Spotlight on Alyssa Dickey: Building a Family While Living with Multiple Myeloma
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I am sharing my story to dispel some myths about the typical myeloma patient. I have been living with multiple myeloma for 8 years (longer if you include the time before diagnosis), but what makes my story unique is that I just turned 40. I am here to tell you that it is possible to live fully, even if you are living with multiple myeloma.
My diagnosis took time, partially because of the barriers young adults face in getting diagnosed, but also because of the belief that multiple myeloma is a
seniors
’ disease.
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In my late 20s my body was telling me that something was wrong. My immune system was not functioning well, and I developed frequent infections (especially strep throat). One spring I was sick four months in a row and ended up in the ER with a blood infection. Over time my list of symptoms also included neuropathy, extreme fatigue, constant headaches, stomach issues and a bleeding disorder. I had many doctor appointments, yet no one had answers for me.
My family doctor would refer me to specialists, but I never saw a hematologist. The only firm diagnosis I was ever given was that of a “stressed out young woman”. This came from a neurologist I saw to rule out multiple sclerosis.
Fainting episodes due to anemia and electrolyte imbalances eventually led to my diagnosis by a compassionate ER doctor. He never actually said “You have cancer.” But he told me there was something really wrong with my blood work. My protein level was very high and I was anemic. 20 vials of blood and a chest x-rays later, I had an urgent follow up with the hospital’s internal medicine team.
During that appointment I was told I likely had multiple myeloma. Of course, I had never heard of multiple myeloma! The doctor drew a picture on the white board to show the layers of blood cells with emphasis on the plasma cells (mine were about 90 percent of my blood at that point).
I was officially diagnosed with multiple myeloma on February 4, 2010. I was 32 years old. My specialist confirmed I had active myeloma for at least 2 years prior because my m-protein was so high. I was told myeloma was rare for 30-year-olds, so it would not have been something that doctors were looking for. Given my symptoms were mostly related to blood and immune deficiency rather than typical bone symptoms, this also caused delays.
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I was admitted as an inpatient for a bone marrow biopsy and a high dose dexamethasone treatment. Velcade was not approved for newly diagnosed patients yet, but it was added to my treatment regimen via compassionate funding from the hospital and a drug company. After five cycles of induction therapy, I had my first autologous stem cell transplant at the Princess Margaret Cancer Centre.
One of the most difficult things about a multiple myeloma diagnosis is hearing your doctor tell you it is incurable. The course of disease includes periods of treatment followed by periods of remission. Once the shock of having cancer wore off, I made the decision to continue living my life. I did not identify as a sick person, and multiple myeloma was not going to define me. Lucky for me, my partner (now my husband) supported this mindset. Cancer forced me to live my life more consciously and focus on what is important to me.
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The event which shaped my life the most after being diagnosed with cancer was becoming a mom. Growing up, I always wanted to have kids. After my cancer diagnosis, this dream was suddenly threatened. The high-dose chemotherapy used for stem cell transplant is toxic to fertility. I was referred to a reproductive endocrinologist to talk about my options.
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At the appointment my doctor confirmed the stem cell transplant would leave me infertile. My best option was to undergo an IVF cycle and freeze embryos for when I was healthy enough to get pregnant. I had a one-month window after my induction chemo before starting the stem cell collection process. After three weeks of daily injections, daily ultrasounds, and many hours in waiting rooms we successfully froze 9 embryos. I had a complication from the retrieval procedure called ovarian hyper stimulation, but our embryos were not impacted by it.
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Our goal of starting a family influenced some other decisions about my treatment. I was offered oral thalidomide as maintenance after my stem cell transplant. But I declined knowing I wanted to get pregnant and thalidomide is teratogenic.
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After my stem cell transplant, we met with a high risk obstetrics specialist at the Hospital for Sick Children’s Motherisk program to discuss pregnancy and multiple myeloma. Given it is quite rare, not much medical literature is available on this subject. We were told to wait a few years but to go for it if I was healthy. In 2013, we decided it was time! I had maintained a complete response to my transplant (maintenance drug free).
Getting pregnant was not an easy process. It took four IVF cycles using the frozen embryos. By the fourth cycle we couldn’t understand why it was not working but decided to try it again and move on. My regime included hormone shots, blood thinners, steroids, antibiotics and supplements. Miraculously, our last cycle worked. My son was born in June 2015. He is a special blessing worth the many sleepless nights. He always has a smile on his face and has brought us a lot joy.
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Unfortunately in 2015, a trace myeloma protein appeared in my blood work. My pregnancy was high risk due to my multiple myeloma, but it was pretty uneventful. I had additional tests and scans, but my baby was strong and healthy. My biggest complaint was morning sickness, which my doctor told me it was a sign of a healthy pregnancy.
By 2017, my multiple myeloma was in full relapse and needed treatment. With so many options since I was first diagnosed it was difficult to decide on a treatment method. My doctors and I agreed to go with carfilzomib (Kyprolis) and dexamethasone, plus a second autologous stem cell transplant. We continue to hold off on Revlimid (lenalidomide) to save it for a future relapse.
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Multiple myeloma created challenges for my family, but also brought us close together. We go to my many appointments together, and juggle daycare pick ups and chemo treatments. My son often comes with us for my treatment. He is a ball of energy and optimism, and other patients ask me about him when he is not there. We talked to a social worker about the best way to talk about cancer to our son. We were advised to make it as normal as possible. Use the word cancer and discuss the treatment and side effects so he knows what to expect. On chemo days we simplify daily tasks. For example, I throw something in the slow cooker in the morning so dinner is ready when we get home, and we usually skip bath time!
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Finding the energy to keep up with a 3-year-old can be challenging, especially when you have cancer. I was an avid cyclist, but 5 years ago I traded cycling for yoga due to fatigue. Yoga keeps me flexible and grounded. I can get down on the floor and play with my son and enjoy the moments while he is small. I continued 2 or 3 yoga classes a week during my relapse and treatment and recovery from my second transplant was smoother with fewer side effects.
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Alyssa with her husband and her son
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We are realistic about the future and do not know what will happen with my cancer or treatment. I have plans and dreams for the future, but we also live in the moment. Myeloma makes me a better mom for experiencing life. We celebrate holidays with pictures and special activities. I want to create a legacy for my son to remember me by. We plan fun days with family and friends, so he knows he has a community around him. And we reach out to our community when we need help, such as during my second stem cell transplant.
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I hope by sharing my story I dispelled some of the myths on typical myeloma patients. Though I faced a long delay to get diagnosed with multiple myeloma, since my diagnosis my medical care has been excellent. From my doctors and nurses, to lab and imaging techs, and social workers, my team has done their best to keep me healthy. You can live your best life, even if you are living with multiple myeloma. Stay active, live your life consciously, and continue to follow your dreams.
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To find a local support group in your area or for information on how to start one,
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