My doctor explained I was in what was called “partial remission.” What does this mean? Web MD https://www.webmd.com/cancer/remission-what-does-it-mean
explains “The cancer is still there, but your tumor has gotten smaller – or in cancers like leukemia, you have less cancer throughout your body.” Complete remission means all your cancer cells are gone and there is no evidence of disease (abbreviated NED.) However, doctors are cautious about using the term “cured” with any type of cancer for five years, because it can come back.
With a blood cancer like mine (MDS), there is no cure and I will never be NED. All my bone marrow biopsies show abnormal cells no matter what. The number of cells on the deletion 5q has gradually increased over the past 9 years from 30% to 60% to 90 - 100%. This means there is a tiny little wrong hook on each red blood cell. But the oncologists have told me not to worry unless the blast cells increase and start to go into leukemia, which it did once. I was put on a powerful Vidaza shots for two years, which kept the blast cells down and the MDS from worsening into a full blown leukemia. I know I was one of the lucky ones.
I had no idea how important blood work is until I was diagnosed with cancer. Now I know that MDS causes the red blood cells not to carry blood correctly to the body. Results can be inability to walk long distances or climb steps, extreme fatigue, and shortness of breath along with other bothersome symptoms. Thankfully, the two chemo’s I was on, which were Revlimid and Vidaza, kept me going! But I never truly felt that I was in remission because of the terrible side effects we all know too well.
After eight years a strange phenomenon happened. My hemoglobin count dropped below 10. I was miserable and could barely function. Going up the stairs to my apartment was impossible without hanging on the rail, and pulling myself up step after step. If the hemoglobin part of the blood count is below ten, the protocol is to start on Procrit shots. My blood levels improved and I felt better than I have since first diagnosed. My energy was back, I could climb steps normally, and I was no longer experiencing those awful side effects. The only problems after the shots are headaches and muscle pains.
I have been fairly warned by the doctors this euphoria won’t last. The average time for these shots to work is a year, and I will need to go back on chemo. I feel like many of us survivors that I am a ticking time bomb.
I don’t even know if the scientific community would technically term this a remission, since the cells are all distorted. But being chemo free and feeling good, I call it that. I am well aware that this is temporary, but as I wrote in another article – so is life! (Being Off Chemo is Temporary, But so is Life!)
Remission for me is not having horrible diarrhea, extreme fatigue, chemo fog and painful shots. Remission for me is feeling good. Remission for me is being able to travel, take walks with my dog, spend time with family and friends, and write. Maybe the better word is reprieve.
The definition of reprieve is “A temporary escape from an undesirable fate or unpleasant situation; or to give relief or deliverance for a time.” I have also been told there are new chemo’s out there I can try when my reprieve ends in order to stay alive.
So yes, I will use the word remission or reprieve and go for a walk instead of a nap. Cancer survivors learn to appreciate every day and that is good enough for me!