Monday, April 15, 2013

16 Years With Myasthenia Gravis

business concepts,concepts,hourglasses,photographs,sands,timesToday marks my 16th anniversary with MG. I wrote about how MG arrived here, so I won't repeat it. I'm amazed to still be alive. I am delighted to still be here. Life is valuable and worth fighting for. Sixteen years with MG. Fifteen years post thymoma. Nine years and 348 chemotherapy treatments. Almost two years with diabetes. Almost one year with XPU my insulin pump. And I am still alive. The part of me that has fought with fierce determination says, "I've made it 16 years. Here's to 16 more."

Then there is the other side of me. The part of me that stays in bed all day Tuesday. The chemo made me throw up last week. Usually my anti-nausea meds keep that from happening, but not this time. Throwing up from chemotherapy isn't like being drunk. It's more like being drunk, while having a stomach virus, in rough seas on the SS Chemo. After I got back in bed, tears ran down my face. I said, "I can't do this anymore."

My fighting spirit says, "Yes I can! I can do this. I've done this for 16 years. Of course I can make it 16 more." But, there is a point where a fighting spirit meets stronger forces. Even a champion heavyweight boxer can't stay in the ring indefinitely. MG has beat the crap out of me for 16 years. I am becoming increasingly aware that I can't take chemo every week for the next 16 years. Another 832 more chemo days is more than I can imagine. It's more than anyone should expect me to do.

And yet...

Medical science keeps advancing. I look at XPU and my Dexcom and imagine a day when my pump and my CGM talk to one another. One day the artificial pancreas will stop being an experiment. New and improved insulins will be discovered. I believe there is hope for my diabetes. Because MG is rare I have less hope, but maybe someone will figure out a new treatment for MG. Something less toxic, less painful, and less overwhelming than what I am doing now. Will it happen? I don't know. I do know if I give up now I'll never find out.

So on this anniversary instead of promising myself I can face down 16 more years with MG and diabetes, I am promising I can deal with it for now. I did not survive the past 16 years to give up now. I have music to compose and performances to plan. I have a book to finish. I have things I want to do. I have love to give and receive. I have fragile health and a strong will to thrive nonetheless. Sixteen years ago I could not have imagined what my life is like today. Perhaps sixteen years from now I will look back on today and be so damn glad I didn't give up. Right now I am glad I didn't give up back in 1997.

Chemo days have been rough lately. If you could keep me in your thoughts on Tuesdays I would appreciate it. I can't deal with this alone. Thanks to you I don't have to, and that matters.


  1. Tuesdays: I'm on it.

    Much love to you, Marie.

  2. You are such a warrior, Marie. I so appreciate you.

  3. Congratulations on making it to 16.

    Hang in there. You only need to take one day at a time. They add up by themselves.

  4. I'm reading this on a Tuesday and I just said a little prayer for you that your treatment goes okay. Congratulations on making it through the past 16 years with such a gritty, inspiring attitude! I hope it becomes easier in before 2029......

    --Caroline (a latent cellist)



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