When you have cancer, you have to accept a lot of changes. Sometimes I just sit and wish for my old life back, but it never does any good. I still have the disease to deal with.

One of the drugs I’m on is dexamethasone. It’s been causing some cosmetic changes, like thinning hair and edema. Most people experience the edema in their feet and legs. I have it in my hands and face. It’s also causing weight gain. I still don’t eat junk food, simple carbs or sugary stuff, but I’m putting on some pounds anyway. I’m going to do my best to get rid of the 10 or so pounds I’ve gained and not let them come back. It’s a struggle for a lot of people on dex. My doctor said that cancer doctors are some of the only doctors who don’t mind when their patients gain weight.

When I was first diagnosed, one of the first changes I had to adjust to was the liklihood that I wasn’t going to get as old as I always assumed I would. There’s a possibility that new drugs or a cure could change all that. I hope that’s the case! I asked my doctor the other day about how long I could expect to live. The conservative answer was 6-7 years and the optimistic answer was in the neighborhood of 10-12 years. He said it’s not a particularly cheerful outlook, but it’s better than it would have been before we started using drugs like thalidomide. I know there’s no way to tell for sure, so I have that in the back of my mind all the time. I told him that I know some people only make it months or a few years, while others live 10+ years. He said that he thought I’d probably be one of the ones that gets to 10, 12 or 13 years. My prognostic factors at diagnosis seemed to be good. What he looked at were things like beta 2 microglobulin and c-reactive protein. You can see all that stuff by looking at my labs.

I’m responding well to treatment now, and that’s a relief. With MM, something that’s stressful is that you don’t know how much time any treatment will buy you, if any. Some people resist treatment and are known as refractory. Some people have been treated with thalidomide and enjoyed years of remission from it! We all hope to find the regimen that works for us. I think everyone would agree that quality of life is most important.

Would you live your life any differently if you thought you had just a few more years to go?