Multiple Myeloma, Why Me?

The diagnosis of cancer for any person is scary. What happens when the provider is diagnosed with cancer? In this case, she tries to deny this and is not willing to accept a diagnosis of multiple myeloma until all tests, including a painful bone biopsy and images prove her wrong. She was afraid to tell anyone, she thought she did something wrong.

Being a health care provider, I look at every research article, digest anything and everything that contains information on multiple myelomas. What is the life expectancy? What do I tell my kids, grandkids, my friends, my coworkers? Will I be able to keep working? What is the treatment for this cancer and how will it affect my ability to provide care for patients, do the normal stuff at home, do laundry, clean, cook and just be the wife, mother and grandmother I have been?

In the first stage of my cancer treatment, I could barely manage walking, moving, talking or thinking due to the strong doses of chemotherapy. The multiple blood and platelet transfusions as well as painful peripheral lab draws made me cry. The joints and body aches where horrible, fear overwhelming. I thought for sure I was dying. I pushed myself to exercise, something I normally did before multiple myeloma. I started with walking on my treadmill, half a mile then slowly, sometimes crying with each walking step, increased over months to three miles daily and faster speed, eat, which is challenging when nauseous all the time, and take every medication prescribed (I was one of those patients if another option than medicine available I would do or take).

After several months I was graduated to an immune modulator to keep the multiple myeloma cells from growing and considered to have achieved a stable result of this disease.

The cost of the medications promoting stable multiple myeloma is astronomical, $2,000 to $3,000 for 21-day supply of tablets. Thank goodness six months later I qualified for help through the multiple myeloma support group. This amount of money would wipe out the savings of any patient in no time. Every time a immune modulator is changed you must get prior approval from the insurance company and hopefully qualify still for other available financial help. Being stable I could return to work. Managing the side effects of medications to keep you alive has been and daily remains challenging.

I have always exercised, tried to eat well and stayed active. Sometimes with multiple myeloma you relapse and exercising is more difficult to do — the shortness of breath, the fatigue and muscle, joint pain. But I believe if I didn’t exercise and push myself to try and eat healthy, I would not be here.

I have had multiple myeloma for four almost five years. This last relapse which happens with multiple myeloma, took longer to control, you are stable maybe a year then relapse. Needing to return to chemo medications, more labs, more side effects to get you back to being stable. Always wondering if this time, you won’t stabilize.

By stabilizing I mean doing normal everyday exercise, housework, cooking, laundry, and most importantly to me being able to continue working in a position that gives me purpose and exposure to awesome patients. It remains a privilege to be allowed into a patient’s life physically and emotionally, giving treatment and guidance to feel better.

When you have multiple myeloma and relapse you are back at the oncology department weekly, sometimes twice weekly. Having chemo medications, blood transfusions, injections, IVs, lab work, seeing an oncology provider. Fortunately for me I go to Memorial Hospital oncology unit, North Conway, New Hampshire for care and have for the entire course of my diagnosis and treatments. I sometimes go to Maine Oncology for a follow up and review of treatment plan.

I am so lucky to be well taken care of by a group of oncology nurses, oncology specialists in the community I live in. My labs are monitored for any and all changes, and this group of specialists are right there making changes and adjustments as needed. The lab and pharmacy at Memorial Hospital provides all my medications needed during a relapse and works closely with the oncology providers.

Besides having an exceptional care team: Leona Cloutier NP, multiple oncologist providers, nurses. At Saco River Medical Group I am closely monitored by my PCP, Emily Beaulieu NP, my colleagues, especially Judith Brewster PA and Doctor Hubbell and amazing staff. My family, husband, children, grandchildren, great-grandchildren and friends are my strengths.

So, in the beginning of my journey with multiple myeloma I was scared, I would feel a new ache, or symptoms wondered if I was going to die. I remain petrified this could be inherited by my children. Now, with the kind of care and support I receive I just do not have time to think about getting worse. With the current research, just maybe I will live long enough to see a complete cure for multiple myeloma.

Why write this? If you know any loved one, friend, even a patient with multiple myeloma they experience new symptoms each day and live with a disease, financial burden, medication side effects, that is a part of their life forever. Just reminding them how special they are can give them the encouragement to keep going and not give up. There is no cure currently for multiple myeloma.

Geraldine Lau, who holds a doctorate of nursing is a family nurse practitioner.

This piece reflects the author’s personal experience and perspective. For medical advice, please consult your health care provider.

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