Remission …….this different place

Several blogs have been written lately by the Myelomaville People (that group of people that are either “victims” of MM or are caregivers of those victims) about Remission, and the affect on them, or their patient. Lori Puente, a good friend, designer and weaver of beautiful scarves, great blogger, (Riding the Wave), and expert caregiver on this journey for several years, with much valuable information, had a quote on her blog recently that “remission is an awkward place”. I had never thought about it in that light ……but I realized, after reading her post, that’s exactly how it is.

We, as the caregivers don’t actually know what to expect, and I daresay the patient does either, during that time. There are several different definitions, on the web, for remission. The one that I seem to connect with, the most, is from Wikipedia. Strangely enough, it’s under the definition for “Cure”, and remission definitely does not mean cure.

A remission is a temporary end to the medical signs and symptoms of an incurable disease.

I would agree that remission can be a temporary thing, but I’m not so sure it means an end to
all the medical signs and symptoms. And, that is why remission is an awkward place. Remission, in our house, has not meant an end to fatigue, or pain, or feeling bad. Remission hasn’t meant being back to “before cancer normal”. I finally know what others, on this journey much longer than we, mean by the “new normal”. The “new normal” is doing whatever one is able to do.

The “before cancer normal” was being able to play 54 holes of golf, in one day. The “new normal” is unable to play golf. The “before cancer normal” was always being able to drive. The “new normal” may not be able to drive. The “before cancer normal” was able to walk long distances. If the “new normal” walks even as much as one-half block, he’s in tremendous pain. The “before cancer normal” got up very early every morning, went to his shop, and worked at least 8 hours. The “new normal” sleeps later and on days he’s able to go to his shop, he may only be able to work 2 – 4 hours. The “before cancer normal” could lift anything. The “new normal” isn’t supposed to lift over 10 lbs.  The “before cancer normal” loved road trips. The “new normal” is unable to ride long distances.  

My honey was first deemed to be “in remission”, in April, 2011…..exactly six months after he had been diagnosed with MM.  Looking back, I think it was probably only “partial remission”, because all his numbers weren’t good, and he relapsed after less than 3 months. He was devastated. He knew that there isn’t a cure, but I think he thought it might just “go away”.

I’ve often written how he isn’t always good about sharing how he feels. But after 15 months, I’ve learned to read the signals. He may not tell me, but on those days when he stays in his pjs, or is resting on the sofa most of the day……I know it isn’t a good day. And when he needs more of his “little white pills” in order to endure the pains, in his back, I know it isn’t a good day.

After just two cycles of Revlimid he’s once again in remission. This time, all his numbers are great, and I believe he’s in ‘Complete Remission’ or, as his onc. states, “Clinical Complete Remission”. Meaning that all his simple blood tests are good, but no Bone Marrow Aspiration has been done. He’s living a “new normal” kind of life on the days that he is able.

I resist allowing my mind to wander to the time when he may relapse from this period of remission. I’m living my own kind of “new normal” as a caregiver, medical researcher, pill giver, cheerleader, and optimist. Remission is definitely a different ……awkward place, but I’m so glad we’re there…..for a little while, anyway.