Tuesday, March 5, 2019

Sharing a Post from the Myeloma Beacon

Living For Lamingtons: Do I Have To Be Relentlessly Positive To Live With Multiple Myeloma?

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.

1 comment:

  1. Great article Matt. I'm so tired of everyone saying, "Just Be Positive"!!! Grrrrr, I'm one of the most positive people on the planet, but dang it, positivity, doesn't "cure" or prevent cancer. Yes, being positive helps us not be depressed and despondent all the time, but, as terminal, incurable myeloma patients, we have every "right" to be "negative" and be fully aware of the fragility of our status. I think only myeloma patients get this..


Berenson Oncology Success Rate

 Some reading about my myeloma specialist's success rate. A press release and an article from Targeted Oncology.