Wednesday, February 1, 2012

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.


  1. Hey Sarah! What a great, great, great illustration of what "new normal" is all about. I wrote about that today on my caregiver series I'm writing addressing Gail Sheehy's Eight Labyrinths of caregiver's from her book Passages in Caregiving (which I haven't read!). I'm going to link your post in the comment section because it is excellent. Some patients hate, hate, hate this "new normal" thing. But it is what it is and so aptly describes the phenomenon. If we don't get a new normal it will simply devastate us. At least that has been my own observation. Imagine if you were paralyzed and now you could walk with a walker? If you compared that to before it's not much to celebrate. But if you compare it to not being able to move at all, IT'S HUGE! All in your point of view.

    Hugs dear friend.

    PS Have you tried switching him to Kadian for his pain? I wrote an article about it over at the Beacon.

  2. Lori: Thanks! I'm in the process of reading your Caregiver blogs....and as usual, you always hit the nail on the head.

    I read your post about Kadian, but Bob is so sensitive to any sort of change....and the Dilaudid works (along with the Spinal Lumbar Dennervation). I'm gonna' go with the "if it ain't broke, don't fix it"....this time. LOL

    Thanks for all your good info. What would Myelomaville do without you? (I think someone else actually said that, too!)


  3. Thank you both. I find both of your blogs to be so informative, helpful and supportive.

    1. Sandra: Thanks! I just have to say it, the way it is. I think we're all in the same place, at different periods of time....and it helps to know that others are where we have been, or where we will be.

  4. I can always connect with everything you have to say. Which might sound unusual since it's your husband with MM - and for me, it's my teenage son. I guess it's the role of caregiver that resonates.

    After a diagnosis of MM, our lives are forever changed to the "new normal" and we, or at least I, have to learn to live with all that means.

    Thank you for your wonderful posts. Hugs...

    1. Angie: Strange how age doesn't seem to make a difference, with MM.

      As caregivers, when their lives changed so did ours. I think it's probably so much easier dealing with a spouse with MM. You have my admiration're quite a mom!!

      Hugs to you!!

  5. Angie, your situations is so incredibly unique. We all peek around the tree trunks hoping we see Tanner goofin' off and you shaking your head, and clucking your tongue the way we mothers do. We are always so relieved. And yet, in reading your posts from time to time, there is still that common thread that winds through your story that we all share.

  6. You put it so well. It can be hard to accept that we can't go back to where we were before the whole MM adventure began. But this is where we are! THIS is NOW! And we just have to get on with it.

  7. aging parent careCaregiver Space. The work we do at The Caregiver Space stems from our commitment to ensuring caregivers feel seen, heard and most of all supported.