Myeloma Mom: Do You Ever Forget?
Fellow myeloma patients: Is it ever possible to “forget” your disease?
If you’re having painful symptoms or side effects, or if treatment has turned your normal life upside down, I know the answer is a big, resounding "No." Myeloma is there every second of the day. But what about the times myeloma is smoldering, in remission, or stabilized by drugs? During these times, your everyday life is mostly “normal,” but can you ever really forget?
I usually can’t. Then, this past Christmas season, I suddenly quit thinking about it for big chunks of time.
It was weird.
Let me back up. A few years ago, a friend of mine – also a mom in her 30s – was diagnosed with a life-changing disease. We sat on a bench at a playground, watching our kids swing and slide, and compared notes.
“When do you stop thinking about it?” she asked, knowing it had been several years since my diagnosis. “When does it stop being the first thing you think about when you wake up in the morning?”
“Never,” I told her. “You’ll never stop thinking about it, but – as weird as this sounds – you’ll actually get used to thinking about it.”
Eight years ago, when I was diagnosed, every thought of myeloma gave me a sick feeling in my stomach and turned me cold with fear. I spent hours on the computer, reading everything I could, scaring myself more and more with each Google search. I subscribed to several e-mail support groups, and I would read every word of them while my daughter napped, convinced that all of the horrible things that happened to the other members of the groups would happen to me, too. Even after I would finally get off the computer, I’d rehash everything I’d read over and over in my mind.
As years went by, I finally learned to quit reading so much about myeloma. I’ve learned to find some balance between keeping myself informed about the disease and scaring the living daylights out of myself with what could happen. I still have moments of panic and fear, but far less often.
These days, Revlimid (lenalidomide) keeps my disease under complete control. I’m healthy and have no side effects from treatment, so my life is “normal.” My myeloma management has become routine, but there’s still a lot to organize.
I see the doctor or nurse practitioner and have blood drawn every four weeks. I sit down with the scheduler and make sure my next appointment is scheduled exactly four weeks later, so I can stay on my regular medication schedule.
I make sure the mail-order pharmacy is shipping me my monthly supply of Revlimid and then receive “counseling” from a pharmacist. If the Revlimid is not shipping out on time, I need to call back and forth between the doctor’s office and the pharmacy until everything is straightened out.
I call Celgene, the manufacturer of Revlimid, to take my monthly survey, and then I call the doctor’s office to get my test results.
I wait around the house for the FedEx guy to bring my drugs. Three weeks later, I do the whole thing again.
These days, everything follows an orderly pattern. It’s not painful; it’s just what I do now.
Still, myeloma constantly hovers over me like a ghost. What if my treatment quits working? What’s next? What if I get really sick? What will that be like? How long am I going to live? It seems like I’m always thinking about it.
And then this past Christmas season hit.
I turned this column in more than a week late. I never turn things in late! Never!
I got so busy shopping and baking and decorating and sending cards and volunteering at the third grade party and taking my daughter to The Nutcracker and moving the dang Elf on the Shelf around every night that I simply was too busy to think about myeloma.
That has never happened to me, but I have to confess that it felt great.
I hope it will happen again. I think it might be good for me.
Karen Crowley is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of her columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at
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I'm happy for you. As the mother of a 34 year old daughter who was diagnosed with myeloma 2 years ago I think about it everyday. She is in remission now, doing Revlimid like yourself after transplant. Even good things remind me. This Christmas I thought, " Oh she has hair this Christmas". Yes things are good but like you said there are many things to stay on top of with bloodwork, perscriptions, Zometa etc. As a diabetic for 45 yrs. since I was 14, I too have many of those things to deal with. Always be prepared, but things have become so routine for myself it's like remembering to brush your teeth every day.
Good for you! I am so glad that you were moving so fast that you had time to forget about MM. It is good to do so try it more often. I've learned that nothing is going to change this situation (my husband has MM) and that positive thinking and planning even though things can change is the only way to live.
For me, it does get somewhat easier when things are going well. I'm almost nine years out and after my SCT it took a long time not to think or obsess almost constantly. It took a very long time and then as soon as I relapsed, I was right back in the obsessing and and constant thinking. Now I've had 3 relapses, like you, I wait for Revlimid monthly to be delivered. I have no pain to speak of, except getting older, and that and not having other symptoms, I think makes it easier to distance ourselves and not think constantly about things. But, when something goes wrong, or we need to change something (I'll be adding Velcade), it's pretty easy to fall right back in the obsessing mode.
Happy New Year and glad you're doing so well.
Yay! Congrats on a myeloma free month. It's a nice feeling.
I can so relate to this. Diagnosed in Oct. 2011 and currently in remission after a SCT, there is not a day that I don't think about MM. I guess now I feel I am in a routine of Revlimid and monthly labs and Dr. visits. I feel ok overall and things have settled back into a sort of "normal", but there is always this "what's coming next" in the back of my mind. I just wish I could go a little bit without thinking about it. I hate having to plan parts of our vacations every year to Houston at MD Anderson but it is what it is. Trying to make the best of it as much as possible. MM has sure thrown a wrench into the works. Thanks for the article. Onward to healing and a cure.
Yep, that darn Sword of Damocles ain't going away until there's a cure. Plain and simple. Unlike many curable cancers where the longer one stays in remission the closer to a cure they are, we MM patients can never really forget about MM due to the simple fact that the longer we are in "remission" the closer we are to the inevitable relapse. Still, we prepare for the worst and hope for the best ... otherwise it all becomes just too much to handle.
So here's to a VERY hope filled new year!
Hello from Italy. Just this morning I was thinking "I wish I could think about it less...there must be a way". I am 59, in remission after months of Velcade and the transplant, and chose not to take lenalidomide [Revlimid] because the results of the few studies about it are not definitive. I am healthy, were it not for the dormant malignant cells. And the thought about it is obsessive, and every time it comes I react by trying to reassure myself, saying “You will have a long remission, they will find a cure” and similar, but I know that it is a hope and that who knows what the monster will do. It is all so exhausting! Maybe that is why I sleep much more than before. It is all stressful, and stress is not good for a cancer patient. It is a vicious circle. Lately I too had a few days in which for 2 or 3 hours I completely forgot about my condition. Will it happen again, will it happen more often? Is the trick being more and more busy? Is there a trick? The thought of spending the rest of my life worried or ill is truly unpleasant. It feels good to be able to express these thoughts with you. I lived in the States for a while and my husband is American.
Wonderful article. We all have our moments--yeah, I know the myeloma is always there, but yeah, life is too, so I try to focus on the life and not my myeloma. (There's ownership for you--"my" myeloma.) And if moving that "dang Elf on the Shelf" around helped you set yours aside, great!
Thank you for this article! I have been following your columns/blog for a while now and it's so encouraging you have been stable for so long and like you wrote, were able to "forget" about your myeloma. Cheers to you!
I remember one of your past columns about your aunt and how you described her myeloma to be so different from yours. I'm just curious if you know your cytogenetic/FISH results vs. your aunts? Like you wrote, it seems that myeloma behaves so differently in everyone - even within the same family in your case. Or maybe yours is behaving differently because you started treatment at a younger age (I'm assuming) and her MM was so much more advanced? I was just curious if you or your aunt had translocations, trisomies, deletions, gains, etc. that would explain the difference. Thank you and a Happy and Healthy New Year to you!
Karen - The haunting' effect of living with incurable cancer, in our case multiple myeloma, is frequently mentioned but yours is the most complete treatment I've read. I remember the furious activity immediately following my dx eleven years ago. An operation, radiation and chemo filled the 12 months following the dx. Then, we went on stand-by, saving treatment potency for a likely relapse. I remember worrying, as my clinic visits were reduced from monthly to every six months, about what those insidious little mm cells were up to with nobody watching.
I've relapsed a couple of times over the years but now, once my oncology team knocks the mm down and adjusts my treatment plan, I don't worry as much. One reason is like you I stay busy and active. The second and more significant reason is that medicine and science together are getting good at developing and implementing new drugs and combination therapies for treating mm.
I do believe that a positive attitude is a real ingredient in my treatment plan. I have to thank you for sharing your sense of humor which has helped me stay positive as I've followed your blog and articles in the Beacon.
Hi again. I have been looking for a n explanation as to why if you are ill you cannot stop thinking about it, and came up with an hypothesis. Nature “reasons” in broad terms. It gives everybody hunger, for instance, even very old people who are done with reproducing and nurturing. To ensure the survival of the species it is better to give the survival instinct to too many than too few, seems to be the logic. When we fall ill, no matter of which disease, it makes us think about our condition so that if there are actions we can take to recover we will take them. Sometimes they can be taken, for instance is someone is overweight and smokes and survives a heart attack he/she will most likely change those negative behaviors, assisted by the fact that nature reminds them of their situation all the time. But in our case how we will fare depends on factors, like gene mutations, over which we have zero power. Maybe our attitude counts, that is what they say, but besides trying to stay positive and following basic rules about eating and exercise, what can we do? Not much. Hope. Pray if we are believers. Nonetheless nature reminds us constantly that we are in danger, even when we feel well because the cancer is in remission. I think it is because by giving everybody an alarm bell those who can will modify their behavior and will live longer.
Karen, it's wonderful that you can experience a big chunk of time without thinking of myeloma. May you have many more "chunks" in the coming years. I read Dr. Arnold Goodman's September 10, 2013 article in the Myeloma Beacon, and the title has stuck with me, giving me a perspective that I have found both comforting and encouraging. The title is "Sometimes The Long Term Is A Series Of Short Terms." Lately I am back on chemo after 2 1/2 years of post stem transplant remission. I was almost distraught at first, but now I realize being on Revlimid is the "short term" phase (relatively speaking) which will get me back to remission. I know this is a chronic disease, and I do think of it to some degree every day, but there are now more times when I realize, "gee, I haven't thought of my health this whole afternoon." I wish you a Happy New Year with more peace of mind for the long term.
Great article. Sums up what a lot of us feel. Cherish those days/weeks of time when you forget what you have. It's so nice when you do remember and you're like, wow, I haven't thought about that in a while.
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