Patient Blogs | Multiple Myeloma
How I Resolved My Conflicts About Food and Nutrition
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Food and nutrition play an important role in the life of a cancer patient, but they’ve also been a source of conflict for me since my diagnosis. I know adjusting my diet can help with certain side effects and an overall feeling of health.

When I was first diagnosed with multiple myeloma, I knew there were things I should be doing diet-wise to make my body healthier and ready to take on literal lifesaving poison. The only advice I was given was to eat a balanced diet, but also that there wasn’t anything that would deter disease progression.

So Much Advice

I lived in a small town in Wyoming during this time, so I didn’t have access to a nutritionist -- especially not one experienced in dealing with cancer patients. Ironically, the doctors that I saw in Salt Lake City didn’t think I would live long enough for it to matter, but here I am almost 24 years later.

Along the way I had so many people tell me they had the cure. I just needed to juice, or drink this liquid made from a certain mushroom, and I’d be healed! There were many people who tried to convince me that the supplement they sold would also cure my cancer and that I should stop all traditional medicine treatment.

I had two friends break off communication with me because, they said, I was making a huge mistake not buying their product. I asked one of them if it was their own child and there was a well-known traditional medical treatment, would they choose to use this product only. They said they would. I didn’t believe them. A man who had myeloma told me he was taking phytoplankton and that if I didn’t start taking it, I would die. He died 6 months later.

Everyone is different, and everyone has an expectation of how things will go with treatment, whether it be traditional medicine or natural healing practices. Scientific research doesn’t support that these therapies slow down or reverse myeloma, so it has been interesting to me that the people who are recommending these alternative therapies treat me like I don’t know anything and that I haven’t done any research of my own.

Making My Own Decisions

I have actually tried many of these treatments and nothing has affected my cancer indicators or other important blood numbers. One supplement that has some scientific indication that it can slow down the progression of the disease is curcumin. I took it for many years during my remission after my stem cell transplant. The cancer did come back, but it may have helped to increase my time in remission. I just don’t know.

I have made some doctor-recommended changes through the years because of adverse drug interactions. With one drug you shouldn’t drink green tea or take excessive amounts of vitamin C. Eating asparagus can actually encourage your body to increase its production of myeloma cells. I also have had to increase my intake of foods high in potassium and magnesium as well as limiting the sodium in my diet. Doctors and their support staff have continued to encourage balanced healthy eating.

Eating What I Wanted Didn’t Work

The other side of the battle that I have with food and nutrition is feeling that “I have cancer, I should be able to eat whatever I want. I’m just going to die anyway. I should enjoy my life. Some ice cream here or pizza there isn’t going to matter in the big scheme of things.”

The root of this thought may come from when I was first diagnosed. I felt that the doctors encouraged me to eat however I wanted, as long as I was eating. The first line of treatment I underwent made most foods taste terrible. I love chocolate, but it tasted terrible!

When I was in the hospital for my bone marrow transplant, they fed me whatever sounded good to me. Ice cream and mandarin oranges were the things that tasted the best, so I basically lived on those in the hospital. When I left the hospital, one of the doctors working on my case told me to go home and eat cake. They wanted me to eat high calorie food so I wouldn’t lose weight.

Time for a Change

I got very used to eating like that. If I felt like eating cookies or cake, I would eat it. If I wanted a salad, I would eat it. I honestly feel that my doctors didn’t expect me to survive this cancer -- my prognosis was just 2-3 years in 1997 -- so I might as well eat what tasted good.

With this attitude, and the steroids I was treated with during and after my stem cell transplant, I gained almost 30 pounds. The transplant put me into a 12-year remission. During this time I tried to take control of my eating  and was able to exercise regularly. I was strong and felt well, until I relapsed.

Every treatment since relapse has included steroids, and I have gained weight with every new treatment. One of my radiation oncologists, when I expressed my concerns about weight gain to him, said I shouldn’t focus on that. He said to realize that my body has changed chemically and that eating with moderation and balance are the best things to do to keep me on the right track.

I know so many people who swear by their keto diets or health coaches and believe they do wonders for them. I know the value of a good healthy diet. I know I need to have healthy eating habits. Diet and nutrition are very personal choices that also can have very emotional responses for people. I think we need to give each other grace, share what works for us individually, but also have no expectation that others will follow suit.



Photo Credit: stnazkul / iStock / Getty Images Plus via Getty Images

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Beth Ayen

Beth Ayen

Diagnosed since 1998

Beth Ayen has been living with multiple myeloma for 23 years. Recently retired from teaching, Beth loves spending time with her grandchildren and taking road trips with her husband, Mark, around their home state of Wyoming and beyond. Her passion is to connect with people, especially those with cancer, to encourage them through their journey.

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