Lessons From a Multiple Myeloma Caregiver

When my wife, Beth, and I heard her multiple myeloma cancer diagnosis, our first overwhelming feeling was fear. She focused on her quality of life, her treatments and what she would be missing. I focused on changing my life so that I could focus on her, trying to support her physically and emotionally as well as trying to help her survive and beat the cancer. We have been blessed to have over 12 years. She is currently in hospice being kept comfortable as we await her passing. During this time, we have met many wonderful caring people in the medical profession and support groups, while she has undergone bone marrow transplant and five different chemotherapies plus radiation while never going into remission.

Our journey has had many ups and downs — happy when a treatment works, anxiety while waiting scans, tests and results, and fear when the news was bad. While the journey has greatly affected both of us, we each reacted differently and had a different focus. Within two years of her diagnosis, we also found out that our adult daughter was in active heroin addiction. She decided, after an intervention, to get treatment and went out of state for two months for her recovery program. Beth and I were completely overwhelmed dealing with both her cancer and now our daughter’s addiction. We sought out a local Nar Anon 12 step group and started to attend weekly meetings. I have been actively attending those meetings for over 10 years, completed my own 12 step Nar-Anon program, and even sponsored others. Both the Nar-Anon and cancer caregiver support group taught me that I have to take care of myself, keep myself healthy, so that I can help my wife and my daughter. Even though both of their diseases are drastically different, the tools that I learned to use help me to survive and deal with the emotional devastation of their journeys.

​Some of the tools that I use:

1. The 3 Cs: I didn’t Cause, I can’t Control and I can’t Cure the cancer. I need to stop feeling guilty over things I cannot control so I can focus on those that I can.
2. Expectations. Hope keeps me going. Setting expectations only leads me to disappointment and frustration. I need to keep hope alive and don’t set expectations that I have no control over.
3. Progress not Perfection. I am only human. At times I will lose my temper, make the wrong choices, and otherwise fall short of what I should be doing or responding. I can only apologize to my wife and myself and know that I am trying my best. I can’t expect to be more perfect as a caregiver than my regular life. I am only human. I need to give myself some slack.
4. Just for today. The whole cancer journey is overwhelming. If I focus on regrets of the past, or worries about the future, I am robbing myself of enjoying today and what happiness can happen. We have had many positive moments over the last 12 years that we would not have had if I only focused on my past hopes and regrets and worries about the future.
5. Patience. I have learned that almost nothing happens quickly — test results, cancer therapies, etc. I have to have patience as things will happen as they happen. The more I can be patient, the better off I am. I will have to wait anyway.
6. Feeling sorry for myself. When I think about what could have been, what my hopes were, and what I am currently going through, it is very easy to feel sorry for myself. While this is normal and does happen for me, I can’t live in feeling sorry for myself. I won’t be able to function.
7. Let Go and Let God. I ask God to give me and my wife strength, peace and serenity to go through this journey, especially at the tough times. Eventually we all die and I can’t change that. With this as my prayer, I have always felt some comfort after praying this prayer.
8. It is my choice. It is too easy to feel like a victim. I know it is my choice to be a caregiver. I am in control of wanting to help and support my wife during this journey. I am in control of that decision. I am not a victim.
9. People: Family, friends, medical professionals, cancer caregiving support groups, counselors — I am not alone. Talking about my feelings and sometimes getting requested advice from others helps me survive the tough times.

Reach out to professionals, go to safe online sources, contact your local cancer support center. I hope these tools help you as they have helped me.

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

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