Should I Keep My Blood Cancer a Secret?

I was at a Bunco fundraiser when a lady at my table said her husband had been recently diagnosed with multiple myeloma. I replied that I had something similar called myelodysplastic syndromes (MDS). We visited briefly. Her husband was taking the same drug that I am.

Did I say the wrong thing? I think it was okay because when I told her I had been diagnosed six years earlier, it pleased her that I was doing well. I guess my good outcome gave her hope for her husband. After all, a cancer diagnosis affects the whole family.

Grieving over cancer

I think we all grieve our disease differently. I know some people tell no one about their cancer. Some people don't even want to learn about their disease, just enough to handle their symptoms. I can't imagine. Others, like me, read like they are studying for their college finals.

A few months after my diagnosis, a former student of mine, who was twelve at the time, saw me at the mall, hugged me, and then asked, "How's your cancer?" (His mother told him about my Facebook post about my trip to MD Anderson.) His father looked embarrassed. Although I wouldn't recommend starting a conversation with that question, it was okay because I knew the young man meant well.

No one-size-fits-all treatments

Of course, no one travels the same road with blood cancer. I was initially in denial because one of the symptoms of MDS is losing weight. Well, that sure isn't me! I seriously thought cancer patients were supposed to be thin. That's how they show them in the movies! Although I don't eat Paul Bunyon-size portions, I have a good appetite. Blood cancer symptoms differ for everyone, and there is no one-size-fits-all treatment.

A former coworker said to me, "Oh, I thought you were finished with that blood cancer." (We Americans expect fast cures for everything, don't we?) "Didn't your cousin donate bone marrow for your transplant?!" No, he offered, but I am not a candidate for a transplant. Besides, having a transplant is challenging for both the donor and the recipient. A transplant certainly isn't a walk in the park.

Find your friends!

My friends have been a blessing to me. Some of my former coworkers and I meet monthly for lunch, and I think we could gab until dinnertime. We stayed so long at one restaurant visiting that we remembered to leave a generous tip because we took up table space. Since my diagnosis, I have lost one friend. She became upset when I declined her invitation because I wasn't feeling well. (She knew about my MDS.) Later, she told me she didn't want to hear about my illness because her dad had been sick for a long time. I deleted her name from my phone; I need to surround myself with positive people.

When I tell people about my MDS, I am not seeking sympathy. I need to explain why I might not seem like myself. Some days, I am tired and don't feel like visiting.

Making plans

Last summer, I volunteered to help with a DAR project (Daughters of the American Revolution). Unfortunately, I wasn't feeling well enough to participate in the event on that day. I explained that I had a bad reaction to my treatment. "It's okay, Connie." the coordinator said. "We have enough people to help." The world didn't end.

Volunteering for future events has worried me for that reason. What if I wake up feeling like someone has kicked me down a flight of stairs? Before I offer to help, I look at my calendar to see what's happening. I try not to overdo it. Life goes on with or without blood cancer.

So, what are your thoughts on this? Do you tell people about your blood cancer? Do you tell only family and a few friends, or do you tell no one at all? I'm sure you have good reasons. It's your cancer, so it's your choice.