Tuesday, March 5, 2019
Sharing a Post from the Myeloma Beacon
by Majorie Smith
There are a few things about having multiple myeloma that I don’t think I will ever get used to.
One of them is the way people react when they find out that, despite treatment, multiple myeloma is a cancer that comes back. It is an uncomfortable situation for many people (including me and all the Myeloma Beaconreadership!), and I have found that it is often very difficult for some people to accept.
When I was first diagnosed and began treatment, I didn’t know this fact myself. I just gradually realized that multiple myeloma was a disease where remissions were possible, but cures were not. The mission, for me, in those early days was to try to get me well enough to cope with the induction regimen and then a stem cell transplant. Not surprisingly, none of the doctors or nurses talked about relapse during those early days.
But, of course, as I became more knowledgeable about multiple myeloma, I did find out about the "normal" progression of the disease. I also read about the hopes for a cure and the possibilities of some of the newer treatments, such as CAR T-cell therapy.
I prefer not to dwell too much on the inevitability of relapse but rather concentrate on the good days and my time in remission. I want to be positive about my life, and I feel that I do have a positive outlook.
At the same time, I also want to be realistic. I want to be informed, and I want to be as fit and well as possible during this time. I have great days, I try to enjoy all the good times, and I feel very fortunate.
However, I am not relentlessly positive!
When I see my myeloma doctor, he always mentions that I will need treatment again in the future. I don’t think he likes saying that anymore than I like hearing it.
So when myeloma rears its head in conversation with friends and family, I try to be realistic. I reluctantly use the word "when," rather than "if," when I refer to the myeloma coming back. I have noticed that my choice of words makes some people very uncomfortable; often they interject and change my wording to "if."
Other people ask me if I am really sure that the myeloma will come back, to which I usually reply that it always seems to return. I don’t push it, but I leave the person looking sad, and I don’t like that either.
Other people have said to me, once I have used the "when" word, that I ought to remain more positive and that having a positive attitude will help. (I think they mean that a good attitude could stop the myeloma from coming back, but I am not sure that they really believe that). I try to say that I do have a positive attitude, but that it is realistic at the same time and not “relentlessly positive.”
Another area where I may not come across as "relentlessly positive" is in planning ahead.
Many people I know are waiting to have a particular sought-after experience, such as a special vacation. The reasons are many, but in essence they are all planning well ahead. Their reasons could be that they have not retired yet, they might be waiting until their children are no longer "on their wallets," they may be saving up for a trip, or they may be waiting until the time seems right.
I understand their mindset. I think it is a very natural part of being the age that most of my family and friends are in.
However, I cannot enter into this planning-ahead mindset. I would love to join them in the plans to go to Namibia in 2020 or Alaska in 2022. But I can't. As a result, I think that many people feel that I am being pessimistic when I show reluctance to join the plan and attempt to explain my reasons. Their response can seem to go along the lines of "Of course you will stay well until then; be positive!"
Planning ahead has taken on a very different flavor for me. I look forward to the day ahead. I am scared to look too far ahead. I can't wait to experience something that matters to me. I quite unreasonably want to do whatever it is that brings me joy and pleasure right now. I don't think that not having a relentlessly positive attitude is the reason for my behavior. Instead, I have learned to live in the moment and take every opportunity that comes my way.
2.47 latest creatinine 3 years on darzalex/pom 8.5 years since diagnosis 3 hours drive time to Berenson's office 60 total miles roun...