Living For Lamingtons: Do I Have To Be Relentlessly Positive To Live With Multiple Myeloma?
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 Beacon readership!), 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.
Marjorie Smith is a multiple myeloma patient and columnist here at The Myeloma Beacon. Her column is published once a month. You can view a list of her columns here.
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Your columns are always so good. This one in particular really hits the mark for me. I get buyer’s remorse if I pay a lot for something that will last a long time, not because of the money, but because I may not be able to use whatever it is for a long time. I also get the same “be positive” reactions” you do. I finally just took a huge leap for me by putting together a late August vacation in Europe. Of course, I bought every type of trip insurance I could.
Thanks for a nice, thoughtful article. I learned to live one day at a time when I sobered up 30+ years ago, and it serves me well with the myeloma. And the joy you find is available to all of us if we are open to it.
We have choices; we can wallow in our disease and "poor me" our friends and families to tears, or we can choose to see the joy that is there for the taking. I live in the Sonoran desert, and we've had a lot of rain and frosts and even snow and rather than the plants getting all confused, we are having the most amazing wildflower explosion I've seen in 18 years here. No wildflowers? Talk to a little kid. No kids around? Listen to music you love. Still snowing? Make snowballs and throw them like you did once upon a time.
Sometimes a "gratitude list" will help, just making a list of all the things you are grateful for at the moment. Being alive. Being loved. The advances in treatment options. Those are good starters.
I agree wholeheartedly with you. We have bought tickets to an event and then I may be too tired to go. I just want to enjoy what I can. I don't want to feel guilty about cancelling on other people. I enjoy being at home doing my thing when I can.
I have been living with multiple meyeloma without have achieved remission for 48 of the last 72 months now. There was a 16-month break in there starting in 2014, just after my bone marrow transplant.
I simply refuse to back away from the discomfort, whether mine or others. This disease is a fact of life and has a huge impact on my life and that of my family, and in some cases friends.
But 'life' and 'living' is, for me, the point; not the dying. Death from cancer is different from other forms of death only in the 'cause.' There simply is no telling 'when,' other than probably sooner than would have otherwise expected. For however long life exists, I am living it. Yes, my planning or 'looking forward' has changed. But that is part of life. The same thing happened when my eldest daughter was born and when my youngest became ours through adoption; my planning changed.
A excellent distraction for me has been to dive in and learn everything my limited background allows me to learn about the disease. That is how I deal with it. It becomes a systems engineering problem with processes and inputs and key variables and on and on. It's my way of coping with constant treatment, occasional radiation, and transitions from one protocol to the next due to failing efficacy.
Everyone is different, and they handle challenges each in their own way. There is not judgement on my part. However, we somehow need to come up with a language with which to discuss the challenges that allows us to move past the sadness. Nothing wrong with sadness, mind you. But a language which focuses on the living, on the challenges, on the gentle, quiet celebration of each day.
Cancer is a part of life, not a part of death. I have never heard of a dead person having cancer. 'Had' is the operative term in such cases.
I so very much appreciate your columns. They encourage me to examine how I think about certain issues, sometimes much more broadly, beyond the disease itself. Thank you for that!
wjw
This is a happy and sad column.
I feel sad to imagine the 'coming back,' happy that I have the 'now.'
Praying for advances in treatment, so the coming back, when or if, is not that dreadful.
Dear Marjorie – Thanks for the thoughtful column. I am so glad to hear that you are still in a remission and able to do lots of things that you enjoy now! Even if health were not a concern, I think it would still be difficult to plan over two years in advance, as some of your friends are doing. Lots of issues can come up. I was disappointed not to be able to join in a plan for my choir to travel to eastern Canada next July, but actually the whole choir festival was cancelled due to lack of interest. My husband and I mostly travel together now, and we have had some interesting trips over the years. Some of our trips were done when I was in a remission and not taking medications, but other times I was taking medications, and we accommodated for that. I just like to be able for us to be on our own timetable, mostly.
I love this article. Thank you, thank you!
Thank you for this article. It really hit home for me. My family is 'relentlessly positive,' because, well, they don't want to think about the ultimate and pretty much unavoidable path of multiple myeloma. It's really hard to be 'real' around them. They plan next winter, three years from now, and I'm honestly having problems thinking past June. I don't really have any reason to think I won't be here in June: my 'numbers' are great. On the other hand, my numbers were great last year when a chance x-ray caught a lytic lesion in my skull, prompting a whole bunch of new treatments and another stem cell transplant. So who knows? I don't want to bring the family planning 'down,' and I certainly don't want to make everybody else miserable, but reality is, well, right there. I may not be here in three years. So can we plan that trip to Yosemite for this summer instead?
Dear Marjorie,
Thank you so much for the thoughtful column. As for others, it really touched me, and touched on something I – and I imagine most of your readers – struggle with every day: the future.
I loved your mention of the if/when dilemma. I never use "when," even to myself, because I find facing that reality too difficult, and like you, I know it makes people uncomfortable. I admire your strength. I know in my heart that "when" is the correct word, but I prefer to fix my mind on the unlikely possibility that it will be an "if." I think this is psychological survival for me.
I so appreciate what you say about positivity, and what it means. I actually live with about a four-month future window, like a headlight out in front of me, and it's hard to see beyond that. And each time I make it past another four months, that headlight illuminates the new ground in front of me once again.
I think we all do what we have to do. I've been in remission for about 16 months, and I'm only starting to dream again about seeing my son graduate from high school. I'm not quite to imagining I'll ever get to see his wedding; I can't go there in my head, yet. But I pray someday I will. I must keep my head down and focus on the next thing, getting him into college. That will be enough, and then I will dream again. Month by month.
Thank you again for the lovely column.
Courtenay
Dear Marjorie,
I enjoy reading your columns; they seem to always hit on something I’ve had to deal with or have thought about concerning my disease. I consider myself an upbeat, positive person, and I do make plans for the future. Once I read somewhere that “Man makes plans and God laughs!” Before I had multiple myeloma, I didn’t know what the future held for me. Why should it be any different now? Make plans! If you are here to enjoy them, great; if not, oh well! In my mind, nothing has changed. I didn’t know before whether or not I’d be able to carry out my plans, and I certainly don’t now. Planning future events keeps me full of hope. I live each day appreciating the sunrises and the sunsets. I think I make better choices about things I truly want to do now. I don’t surround myself with people who see the glass as half full. Life is too short to be thinking that way. My stem cell transplant was three years ago, and I haven’t looked back. I’m on maintenance drugs, which I don’t enjoy, but hey, I’m above ground! Life is good! My side effects are’t pleasant, but I can still do the things I enjoy. My “new normal” is fine, not my first choice, but it’s fine.
As far as if/when multiple myeloma comes back, I can’t control that, so I don’t think about it. I read constantly about my disease and try to keep current with the research, so I don’t have my head in the sand. If multiple myeloma has taught me anything, it’s this: Don’t worry until you have something to worry about. Why waste a perfectly good day(s) worrying about something I can’t change? I figure I’ll deal with it when it happens. My friends know better than to ask me how I am. I’ve assured them from the beginning that if I’m not okay, they’ll be the first to know. I find talking about one’s health tedious. That’s just me.
After re-reading what I’ve written, it sounds as though I’m a Pollyanna. Nope. I’m not. I have my moments of sadness, but I try to counter them by thinking of all the things I have to be grateful for in spite of this dread disease. All I know is I don’t want to be sucked into the black hole where there is no hope. I was in there once, and it scared me to death! I have a strong spiritual life, which helps me in times of darkness.
Thank you for this column. Being positive is a choice we make. However, we can allow ourselves to be negative, too. We just need to focus on being as happy and enjoying our lives as we navigate our sometimes rough terrain with multiple myeloma. Multiple myeloma is not who we are; it’s just a disease we have.
Patty
Marjorie, you hit the nail on the head. I can't tell you how many times I've heard people say to me, "You ARE cured. You're doing so well!" And then when I try to explain the facts about multiple myeloma, they just look at me like I punched them in the gut or like I'm crazy, as if I want to relapse. I guess it's just part of not knowing enough about the disease. I often wonder if / when I relapse, if I'll be surprised. I guess I will be, since I've enjoyed the past 10+ years with good numbers, but I try to prepare myself for the inevitable. I read about someone who relapsed after 20 years. Myeloma is definitely a sneaky cancer!
Take care, Marjorie, and I hope you can plan to take a trip soon. I'm hoping to save up for a big one for my husband and me. As ridiculous as it may sound, I'm going to pray and think positively that I will be able to do it in two years' time.
Thanks so much to everyone for your comments. This column has been long brewing with me and so I am very glad that I finally wrote it!
Dear Mike, thanks for your kind words. I laughed at what you describe as 'buyer’s remorse,' I could identify with that. A product that purports to last 10 years seems to be a little pointless. Best wishes for your forthcoming vacation.
Hi Albert, many thanks for your interesting reply. I love to imagine you in the desert enjoying all that it has to offer. I hope the spring flowers are giving you great pleasure.
Dear Judy, I can join with you in the 'buying tickets for events,' mostly I would also rather do what I can do and not worry about letting other people down. I hope that you have some lovely days ahead.
Hello Wes, is sounds as if you are having a tough time and yet managing to cope with everything myeloma has showered onto you. I thought that your phrase 'Cancer is a part of life, not a part of death' was very thought provoking. I hope that I can keep that to the front of my thoughts going forward. Best wishes to you.
Dear Nisha, you summarised my thoughts exactly! Good luck with keeping onto the 'now!'
Thank you Nancy, I hope that your treatments continue to allow you to have some lovely visits and vacations in 2019.
Dear April, I am so glad that you liked my article and thank you for replying in such a kind and positive way.
Hi Diana, thank you for your comments. I think I can imagine the way you feel when you describe the reactions of your family to your disease. It is so tough and, as you say, 'you don't want to make other people miserable.' I really hope that you make that trip to Yosemite in 2019! Your forum posts always make me laugh, so thanks for all your input.
Dear Courtenay, thank you so much for your reply. It took me a very long time to move from 'if' to 'when' and I still find it very difficult to say. It doesn't sit easily at all. I completely agree with your description of living in a short future window and what you describe as, 'like a headlight out in front of me.' That is so true and is exactly what other people don't seem to understand. I really hope that you enjoy the time in that headlight - sending you my very best wishes.
Hi Patty, it was so good to read all your thoughts and comments. I am very glad to hear that you are doing well and coping with your current therapy. I take your point about surrounding yourself with positive people. I sometimes find myself being sucked into negative thoughts and, then, like you, I start to feel that I am missing out on a perfectly good day! I like the way that you ended your comments, 'Multiple myeloma is not who we are; it’s just a disease we have.' I will keep that it mind. Many thanks and good luck to you.
Dear Susan, thanks so much for your kind words and your comments. It is strange that some people seem to think that if you tell them the truth about relapse that you almost want it to happen. The reality is exactly the opposite of that. I am guessing that you will be surprised if/when you relapse and that it is, more or less impossible to really prepare for that time. 10 years in remission is so impressive, I wish you many more years and a great trip together!
Thanks Marjorie. Yes, as a multiple myeloma patient, the realisation that "remission" doesn't equal "cure" takes a bit of getting used to. I'm blessed to be in complete remission right now and understand that there's research showing that keeping a positive outlook does have better health outcomes. However, like you, I'm not planning much past the next 12 months, for the same reasons. Thanks for the objective look at what we all tend to brush off.
Dear Marjorie,
Thanks for your excellent article. You said it right for me - appreciate each moment we can. Today is a good day!
Sylvia
Dear Lyall, thank you very much for your comments. I am extremely glad to hear that you are in remission and I hope that your 12 monthly plans will take you to some interesting places. Very best wishes.
Hi Sylvia, thanks for your comment and I wish you many, many good days!
Thank you, Marjorie.
I have never had a complete response, even after transplant. April 2019 will mark the 4th year for me and myeloma - 4 treatment/maintenance plans due to medication changes/meds not working.
Your words mirror how I feel, and I especially appreciate the words "to live in the moment and take every opportunity that comes my way".
I don't feel that I can do a lot of things but I can live in the moment.
Thank you very much for your column. It really helped me.
Dear Veronica, thank you for your comments and kind words. I am sorry to hear that you have not managed to achieve a complete response and that you cannot do a lot of things. It is a tough disease and I can only send my best wishes to you going forward.
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