Myeloma Dispatches: Dealing With Denial
Two weeks ago, I was on top of my game. I was training for a sprint triathlon, joined a masters swim team, and participating in a strength class.
A little history: I have been a participant in the Roaring Fork Women’s Triathlon Team for 18 years. We meet twice a week, in the summer, for coaching and training. For me, it is my adult summer camp. Besides, this team has been phenomenally supportive to me through the ups and downs of my disease. I was particularly excited about the upcoming summer because I am not sick, not anemic, not even immunosuppressed. This will be my best summer ever, I thought. My attitude: Seize the day!
Then it came time for me to return to treatment. So what if this was the first time in two months for the six-hour infusion protocol? I enjoyed two months off all drugs for multiple myeloma. I was celebrating a new remission. So what if I was trying to balance a treatment day with an ambitious training schedule? So what?
Over and over, I have to learn that denial works only for a little while. Sometimes when I’m working out with my fellow triathletes who are in their fifties and sixties, I deny that I am 72 years old. Sometimes when I am swimming alongside masters’ level swimmers, I forget that I have always been slow, even when I was younger. I forget until I am in the midst of the infusion that six hours of four kinds of drugs is really hard on my body. After only a two-month recess, I forget that my older body just takes longer to recover from treatment. .
Last month, when I visited the myeloma specialist, he told me that my IgA was climbing again. The good news is that all the other myeloma markers were still in the normal range. Plus my white blood cell count, red blood cell count, and platelet count were all normal. Yet, he recommended that we begin treatment again with a monthly dose of Darzalex (daratumumab) with steroids. “Maureen, you were in bone marrow death last fall, and we don’t want to return there.”
This comment broke through my convenient denial. Without any symptoms, I pretended that I did not have multiple myeloma. Temporarily, I forgot that I underwent an aggressive treatment protocol for my disease from September to March.
Still in the midst of my blissful denial, before my first infusion, I swam with the masters swim team for an hour and half. Then for six hours, I slept in the infusion chair sedated by Benadryl (diphenhydramine). The infusion team wanted to ensure that I didn’t have a reaction to the Darzalex, so instead of oral Benadryl, I received it intravenously. The intravenous Benadryl really sedates me. I didn’t experience any infusion reaction that day. However, the next day, I had mild asthma symptoms with coughing spasms. I still managed to go for a short bike ride. The following day, I completed a fast, four-mile fitness walk with the triathlon training team.
Yet, reality became a cruel teacher. On my fifth day of biking, swimming, and fitness walking, with an infusion day in between, my body betrayed me. The evening after the four-mile, fast-paced walk, my back went into painful spasms. Back pain is a new and miserable experience for me. I had to stop what I was doing.
Fortunately, I have a good relationship with a physical therapy clinic because of my many fractures over the years. After a thorough assessment, I had answers, none of which I liked. One, my gait is crooked because of an old knee injury. Two, I have almost no core muscles, so when I swim, bike, powerwalk, or lift weights, I am overusing my back muscles. The consequence is back pain.
What I didn’t want to hear is that my aging body is part of the equation. I am not 50, or even 60, years old. I am 72 years old. The new remission seduced me into denial. I didn’t want to hear that the multiple myeloma and different lines of treatment over the past six years have left me with a vulnerable body. I have been going too hard, too fast, and too much. My body crashed and got my attention with pain.
Right now, I am following physical therapy orders, decreasing my training to walking and swimming. I dropped out of the strength class, I am skipping masters swimming, and I am missing my triathlon training for a minimum of one week. Every day I perform a regimen of exercises to build up my missing core muscles.
When I return to the triathlon training, I will be cautious and listen to my body. I promise, I will schedule more rest days.
For my next monthly infusion, I plan on two days to recover, with minimum expectations for myself. The oncologist will be prescribing a different, non-sleepy antihistamine for five days to prevent another airway reaction.
I am grateful that I am still in remission. I realize how much I enjoy the social part of my triathlon team. I realize I don’t have to go any faster to be with my friends. They accept me for who I am. I feel grateful that I can still participate in this sport I love.
Once again, I learned that denial really is limited in its usefulness. Real life is much more adventurous.
Maureen Nuckols is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of her previously published columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Maureen, I remember last fall and the trouble you were in. As a 74-year old, t(4;14) myeloma patient, I identified with you and prayed a bunch for you. I'm so appreciative of the new drug (Darzalex) that pulled you through. Take it easy girl and stay well!
Dear Maureen,
You are an amazing woman and since I have been reading your columns for two years, you are my mentor and inspiration as well.
I used training for the NYC half marathon to to keep me focused and help me recover from the stem cell transplant in 2016. Now I am back to work full time, seeing my regular side clients, keeping house, exercising regularly, babysitting my 5-year old granddaughter regularly, and taking that drug that I love/hate, Revlimid as maintenance.
I remember the moment when I realized that denial had an important and needed place in my life. It is the balancing of that denial with real life and the necessary slowing down that I have had to face and accept. And I realize that multiple myeloma just happens to be what caught me as I inch closer to retirement and a less resilient body and not quite so much of my endless energy. A couple of weeks ago I had pneumonia for the first time and it forced me to confront my reality. It laid me out.
The down time gave me lots of time to reflect. I made a commitment to slow down just a little, not push myself so hard, learn how to relax. I'm in my early sixties, not seventies but I see the startling difference from my fifties. I want to enjoy this phase of my life too and my body and mind are "recalculating" as the lady in my GPS system recommends.
Thanks so much for your columns. They give me grounding and a great example.
With love and respect from across the country,
Rebecca
Maureen, the kind of physical training you have been doing is more than what people your age could take on, even without being on cancer treatment. I hope that you can still enjoy the scaled back fitness routine for your health. Working on 'core strength' sounds like a good goal that way. When I had back spasms due to vertebral fractures, they were very painful. One medication that helped was a muscle relaxant; maybe you could ask about that too?
I watch marathons, other road races, and triathlons (Ironman, half Ironman, Olympic) sometimes, since our two sons-in-law like to challenge themselves that way. My husband ran lots of marathons in the past, but scaled that down as our lives became busier and when I got ill too. I know how hard people train for those events, even much younger folks in their thirties! So you shouldn't feel bad if you don't have the energy to keep up that kind of training schedule, I think. Sending positive wishes your way, and my peonies are still not in bloom although it looks like they will be soon.
Wow, Maureen, wow! I am so impressed with all that you do, and aspire to do! I am 15 years younger than you, and couldn't do a fraction of what you do! (Well, I won't sell myself too short, I do take care of our small ranch of horses, dogs, cats, chickens, tortoise, turtle, sparrows, etc, all rescues.) But seriously, I cannot imagine having the energy to train for all the athletic activities you mention, and while being in treatment!
I too am IgA, and am currently on Darzalex, Pomalyst, and dexamethasone. I just completed Darzalex infusion #13 yesterday, and my "steroid high" is now waning. After the 21 days of Pomalyst, I usually wind up neutropenic, and have to self inject Zarxio (filgrastim). I'm so impressed your immune system can handle swimming pools! Wow, I haven't been in a pool since (many months) prior to my December 2009 multiple myeloma diagnosis! Please don't be so hard on yourself! Your previous columns tell a tale of such a strong multiple myeloma warrior, and all the activities you participate in. Again, I am that younger gal you mention above, but I have nowhere near the motivation or energy you have!
Sadly multiple myeloma has "forced" me to finally accept "early" retirement this month from my beloved 35-year career as a college counselor. I too participated in the multiple myeloma "denial" that things would change, or get better, or that I could "get back to who I used to be". Well multiple myeloma wins, as I am finally, well just a little bit, accepting that I'm not the cowgirl I used to be, and fatigue is my middle name, and continual treatment is my forever game.
Some healthy denial has helped me along my 7-year multiple myeloma journey, as it's still very hard to accept my multiple myeloma status, especially when I'm propped up on dex steroids lol. And by the way, I too receive the lovely bag of Benadryl with my Darzalex infusions. I laugh at the conflicting bouncy high of the dex, wrangled in with the Benadryl. But I can't sleep in the infusion lab, as you mention. Ah, this journey ...
Thanks so much for sharing your story, Maureen. Your story pushed many buttons for me :))
Dear Julie, Thanks for the encouraging words. It's good to hear them from another "older" woman who shares t(4:14).
Dear Rebecca, you captured the key role that denial presents in our myeloma lives. A little denial goes a long way, encouraging us to take healthy risks. How to balance denial with reality is our dance. Pneumonia is a big, bad illness so I'm glad that you recovered and with a gift of valuable reflection. You are so right, each later decade of life presents new challenges. I am not the same woman I was 10 years ago.
Dear Nancy, I always enjoy reading your column. My one peony bush is finally in bloom, late in spring and just a temporary beauty for us. Another metaphor about patience and to enjoy the moment. I have really learned my lesson for now so I am scheduling more rest days plus the back pain is gone. Also the core muscles are coming back with exercise.
Dear Julie, I read and reread your comment. Your comment was thought provoking also. I also believe that denial in small amounts is helpful to keep us going. I don't have to take Pomalyst and so I don't have the additional side effects you are dealing with. Management of a ranch equals the amount of time I spend each day training. Remember we are talking one to 2 hours a day, 5 days a week. A ranch doesn't allow rest days. I also had to retire early and that was a real loss because I loved my job. I hope the buttons I pushed were pleasant ones. Let's continue our journey with a cheer for both of us.
Dear Maureen, I am in awe of what you do and the way in which you strive to keep going. Keeping active and fit is clearly very important to you and I hope you can manage to balance this with your treatment. I've also tried to remain very active and I think that has helped me to regain strength and bone density, not to mention sanity! Sometimes I feel that I'm fighting not to give in and I share your determination to do as much as I can each day. Good luck Maureen, I send you my very best wishes, Marjorie.
Maureen,
I think you are doing fantastic and handling things appropriately. Not denial, you just expect more out of yourself. Call it resetting expectations to take into account the triggers of therapy. I do the same. You just have to schedule around your treatments, and as you say, your body will let you know how much time it needs. Keep on!
Maureen,
You are absolutely amazing of what you have accomplished. I only wish that I had half of the energy that you have.
Having myeloma has set me back a lot. I always listen to my body, I can tell when I need that extra rest.
I wish you all the best, and I believe you are handling everything that is placed in front of you.
With the Good Lord looking out for you, and your positive attitude, you will be back to doing what you love the most.
My Best to you,
Hi Maureen - I am a little late in reading your column but it was definitely worth the wait! I am always amazed at your resilience. It gives us hope. Your determination to continue with your physical fitness regimen is inspiring and makes us realize that while multiple myeloma puts limits on our activities, it cannot limit our determination to live life to the fullest. You certainly do that. My husband is still on monthly infusions of Empliciti (elotuzumab), which like your Darzalex is one of the new monoclonal antibodies available to multiple myeloma patients. We do not know at this point how long he will be on this therapy. Do you know how long you will be on Darzalex? Please continue to keep us informed on both your treatment regimen as well as your athletic achievements. Again, you give us hope and serve as a wonderful inspiration.
Dear Marjorie, So glad to share your determination. I also have a social group who rides with me, bikes with me and encourages me each step of the way.
Dear Ron, I really connected with the phrase "resetting my expectations". I get my monthly infusion tomorrow and have already scheduled recovery time.
Dear Louise, Thank you for your encouragement and kind words. I am really back in training. Practicing my new exercises for core muscles and scheduling enough rest days. I don't know where you are in your myeloma journey. There have been plenty of times that I don't have the energy to exercise.
Dear Patty, I am glad that your husband is getting Empliciti. Darzalex is working great and now I am on monthly infusions. I do not know how long. I am glad your husband has graduated to monthly infusions.
Dear Maureen! Just found out Friday that my light chains are lighting up after these 8 months of remission! Drats, almost made it to the Maine trip we talked about! So it's back to the cancer center for Kyprolis once a week before the trip! Tai chi during the eclipse tomorrow and adjust PT plans. I didn't eat all the Snickers bars at the candy counter when we found out! Missed seeing you today but maybe we'll converge at the cancer center! Stay strong dear friend.