Myeloma Dispatches: Chasing Numbers
Six weeks ago, I traveled to a new country in my very own myeloma land. For the first time in five years since my stem cell transplant, I experienced clinical symptoms: low hemoglobin levels, low white blood cell counts, and very low platelet levels. These symptoms are invisible to others. I look the same, but I am experiencing fatigue, shortness of breath, and bruises without any injury.
The symptoms came as a surprise to both me and my clinical team. This new journey began when I took a six-week break from treatment earlier this spring to undergo an arthroscopic repair on my right knee. I could no longer even walk short distances without intense pain. The orthopedic doctor believed that I had a torn meniscus, which could be repaired by a minor outpatient surgery. This repair was essential to my quality of life. I had given up running, but I was not willing to give up walking.
The oncologist and the surgeon worked together to coordinate the timing of the surgery with my Empliciti (elotuzumab), Revlimid (lenalidomide), and dexamethasone (Decadron) treatment. We planned for a six-week treatment break.
After a successful outpatient surgery, my husband and I traveled with our little camper for a two-week tour of Utah, Nevada, and northern California. I could not walk very far and needed the assistance of hiking poles, so no hiking or biking for me. Yet I had a lovely time being a tourist in the beautiful West. By the end of the two weeks, I could walk a half mile with hiking poles, and ride my bike around the campground.
When I returned to the cancer center at the beginning of May for my scheduled Empliciti infusion, the health care team and I received shocking results from my scheduled blood work. My hemoglobin level was extremely low – so low we had to schedule a blood transfusion. My white blood cell count was dangerously low, and, as the newest wrinkle, my platelets were also critically low.
I was embarrassed to report that I had not noticed any dramatic changes. Sure, I was short of breath going up stairs, yet I avoided stairs on our trip because of my knee recovery. During the previous three weeks, I had been walking very little. My only new symptom was noticeable bruising without any injury.
We also learned that my IgA was 10 times the normal level, and my M-spike had significantly increased. Myeloma cells were crowding out the healthy cells in my bone marrow that produce red blood cells, white blood cells, and even platelets. I had not experienced this phenomenon since my initial diagnosis. The assessment was that the vacation from the new treatment was the culprit. The medical team decided to keep me on the Empliciti treatment and reevaluate the plan in a month.
My life changed that day. Again. My protective layer of denial exploded. I realized that I really do have a chronic, incurable disease.
The next few weeks were a blur. Each week, I would have my blood drawn, then wait impatiently for the results. I became too familiar with the cancer center, sometimes visiting twice a week.
How have I responded to this change?
Fear and worry invaded my and my husband’s world. The day I required a second blood transfusion was particularly traumatic. It is clear that the multiple myeloma cells have become more aggressive, so we ask ourselves: What does this mean for the future? Will we need to try another new drug? Will that treatment work?
At the same time, I realize that life goes on. I am adapting to the new normal. Although the lab values are invisible, I now pay more attention to my level of fatigue and shortness of breath. Of course, Revlimid, my old friend and nemesis, causes similar symptoms.
So how am I coping?
I focus on swimming, biking, and walking. Twice a week, together with other women of my triathlon team, I concentrate on different numbers, such as intervals, cadence, heart rate, or miles per hour, in preparation for a sprint triathlon in August.
I also make sure that I am mindful of my surroundings. Our Colorado valley in the early morning is full of wildflowers, rabbits, leafy trees, red bluffs, and sweaty, laughing women of the triathlon team. Did I mention laughter, good cheer, and encouragement for everyone?
What doesn’t work anymore is competing with my performance from last summer. Neither can I compare myself to anyone else on the tri team. This is a real challenge because I am good buddies with many strong athletes. After the knee repair I had to set modest goals. I still need hiking poles so I don’t limp, and I am in aggressive physical therapy. Recently, I completed my first 5K race since the surgery. Even though I came in dead last, it really was ok. I enjoyed the completion of a hard race. One advantage of coming in last is that I enjoyed loud cheering from all my team mates.
I am no longer waiting for the lab numbers to decide what kind of day I will enjoy. If I feel fatigued or short of breath, I take a nap or read a good book. I try to stop chasing numbers right now. Even when I am training, I take breaks from the workout numbers, paying closer attention to where I am.
When I was biking this morning, I spotted a red tail hawk and a fox running across the field. The fears dissipate for minutes as I watch the soaring of the hawk.
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 read your column with my hand to my throat. I understood this line: "I realized that I really do have a chronic, incurable disease." And I cheered this one: "I am no longer waiting for the lab numbers to decide what kind of day I will enjoy."
Savor your days.
When I was on Pomalyst, I had continued to have low WBC and neutrophil levels. I never felt all that different, but Pomalyst also wasn't really doing anything and my kappa light chains were still at 1100. I finally switched to Velcade and wow, numbers came down to normal.
I hope being back on Empliciti again plus Revlimid and dex gets your numbers back down and it was only the 6-week break. It is a hard reality to face. Sounds like you are choosing the most positive path.
This is such a concise view that pretty much sums up the way my Al's and my life has been for nine years. We are both avid outdoors folks. Now it is a blessing if Al feels like going out to water a few plants in our big country yard. I'm still hoping for a revival for him after his recent plasmapheresis and newly embarked upon Darzalex / Velcade / dex treatment plan. As for our fears about regularly having to get blood and platelet infusions, we don't even devote any worry to how those things could go wrong. Right now, that seems to be the small stuff.
This disease will keep you on one long thrill ride, that's for sure.
Maureen, I was sorry to hear your news. With any luck, now that you're off the 6-week treatment break, your numbers should get better again soon. The phrase "the new normal" that you used really sums things up!
All the best Maureen. Fight on!
What a wonderful attitude toward living in the present. A c c e p t a n c e, also known as Accept-a-chance in our world! Sending you healing thoughts and wishing you many continued opportunities of great moments outdoors!
Wow Maureen! I was breathless as I read your column. I am so sorry that this terrible myeloma has reared its ugly head again. I known those symptoms so well. Myeloma is a chronic disease and we all need to be so vigilant. I am glad you were able to travel and have some fun, even for such a short while. I hope your treatment regimen will get the myeloma back in check. Keep on doing what you can - walking, biking, swimming - all good exercises. Hang in there lady - we are pulling and praying for you.
Good luck Maureen! It sounds like you are getting very good care, and are doing everything you can to stay active and fit. Your friends who do triathlons are very supportive too! I used a walker and hiking sticks when I was recovering from vertebral fractures after my diagnosis. The walker was good because I could take weight off the back and put it onto my arms. I still use hiking sticks for balance sometimes; should have been doing that last week when I fell onto a cement sidewalk when I tripped over the curb. OUCH! I get lots of bruises from taking low-dose aspirin. Sending hugs and best wishes your way.
Maureen
Why not buy yourself a blood oxygen sensor like they use in the hospital? You can pick one up online for about 60 bucks. Being an engineer, I got one and verified it to the hospital test when I go weekly for my Kyprolis infusion. It is great at indicating if the hemoglobin is stable or losing ground. Now all we need is a neutrophil measurement, and thrombocyte measurement, and we could avoid all those blood tests!
If you are suffering from low thrombocytes, you might want to consider low impact exercise and park the bike. One fall on that bike could have serious ramifications. Take care
Hello all, The comments remind me that I am part of a special community. We did not ask for membership, yet now that we are part of this tribe, I so appreciate the encouraging words.
April, Your way with words always touches my spirit. Savor the day is the message to cherish.
Christine, Thanks for the encouragement. Pomalyst made me really sick, and Velcade worked for almost a year. The new subq sounds less intrusive too. Hang in there and thanks for the feedback.
Dinise H., 9 years, wow, your honesty really put my almost 6 years in perspective. I hope the new treatment regimen will give him more energy to do what he loves. Fatigue can be crippling. Thanks for the honest sharing, I needed that. What a powerful couple you make to fight this disease.
Maureen
Hello again, Your comments reminded my of the cheering I received when I crossed the finish line at the last race. I was last but the cheers were loud.
Trevor - Your encouragement means a lot. Waiting for the latest IgA to see if the treatment is working. Yes, I am learning that adaptation is a keep skill to develop with this chronic disease.
Andrew - You are a positive reminder with your columns. We both need to " fight on."
Kathym - Mindfulness is the key. I had not heard that phrase "take a chance." I will integrate that with the acceptance. Each day outdoors invigorates me to keep on fighting. Thanks
Maureen
Maureen, I love reading your column. You are an amazing woman, to be so active and competing in triathlons. You have such a great attitude.I wish you well and good luck on your next race.
Hello!
I hope that you're feeling better and more rested each day. That is great that you are continuing to enjoy the beautiful outdoors! Yep, it's a chronic disease we in the multiple myeloma community have, but we're keeping on!
I really appreciated your sharing your experience regarding the treatment break of six-weeks. That is important information, for sure.
Thank you!
So sorry to hear of your new "normal." So many can relate to this – especially the dissolving of the denial. It's easy to be in denial when you're feeling well, can exercise everyday, and your lab numbers are behaving. I admit I'm in denial, but numbers are creeping, so I may lose my cloak of denial also. So happy to hear you say you aren't going to let your lab numbers determine how your day will be. It's hard to do some days, as we are human. Thank you for sharing this path that I hope I'm not going down yet.
Hi Maureen, You and I are both IgA. So sorry multiple myeloma reared its ugly head for you after a break. I've been battling it for 6.5 years now (I forget how long your battle has been), and have finally accepted that treatment is for life, myeloma is for life, meds are for life, and this is for life and we must enjoy every day to the fullest (as you mention so beautifully in your column!). After coming out of remission in 2013 after my 2010 SCT, I no longer "care" about remission and I accept meds are for life. I take the "tortoise" approach to my treatments: slow, low and steady ... forever, no more med breaks. Seems to be working, as my IgA and M protein increase gradually, then respond dramatically to treatment if I have to incrementally increase levels. I ditched Revlimid last November 2015, and moved on to Kyprolis (both with dex at 20 mg per week). Kyprolis (low dose) quickly brought my numbers way down, but I recently had to increase it a notch.
Yes, we're in this for life, but a great life it is indeed. I too love nature and animals and they nourish my soul :)) Hang in there, and I hope your treatments level things out for you again!
Hi Maureen,
Thanks for another excellent column. I'm sorry, though, that you got the rude surprise that you wrote about.
Thanks for being so open and honest about the emotions you've had when dealing with that news. That helps others of us, both those who have already experienced something similar, as well as those who are newer on the path and wondering what it will feel like when we get similar news.
Here's hoping re-starting your treatment regimen quickly gets you back to where you were before the layoff.
And best wishes to you in your upcoming triathlon! You're an inspiration!
Mike
Hello again.
Patty B, Thanks for the cheering and praying, I will take it all. I will keep doing what I love just slower and with fewer expectations beyond completion.
Nancy, I always enjoy your columns, so thanks. I am definitely hooked on using both hiking poles with all my walking. Light weight and collapsible.
Eric, Clever ideas to avoid those pesky lab draws. You need to invent a few more medical devices, maybe an app on our phone. But I'm not willing to give up the bike, I love the bike the best, although I am careful.
Diana, Thanks for the positive energy, I carry all these comments with me, particularly on bad days.
Maureen
Dear Maureen,
Thanks so much for this article and all of your other articles. I've read them all today and this is my first ever comment on the Myeloma Beacon. I wish you luck Maureen, and I admire your strength and the the eloquent way in which you have described your life post diagnosis.
I found your thoughts and reflections very moving and was rather amazed at how much they overlapped with the ways I've been trying to live with myeloma myself. I was diagnosed just over a year ago and early on I decided on 3 rules for myself:
1. Do exactly what the docs and nurses suggest at all times
2. Make as little fuss as possible
3. Look forward and not backwards
By and large I've followed my rules, but many more 'ways to try to live well' have emerged in the months which have followed. Also, I really identified with your chat about kindness and writing notes and letters.
Thanks again Maureen, much love,
Marjorie
Hello again everyone. Your comments remind me what a supportive community this can be. Sorry that we all had to get multiple myeloma to join.
Dear Sylvia – Your knowledge of the the chronicity of multiple myeloma is a lesson I have to learn and relearn. Yet we both have to remember how unique each individual's response to the disease is. Over the past almost 5 years, I have taken several treatment breaks without negative consequences.
Dear Jan – Denial is a warm fuzzy cloak that works well temporarily. May your numbers steady and stop creeping. Glad you could join me with our humanness.
Dear Julie – You are one year ahead of me in the battle with this disease. You are way ahead of me with your acceptance. I am still working on that.
Maureen
Hello all – Today is my birthday, 72 years young, and I am so glad to be alive. I read all your comments, sometimes 2 or 3 times. Thanks for the support.
Dear Mike – I took a risk, expressing the roller coaster of emotions with the recent changes. I am glad you appreciated the honesty.
Dear Marjorie – I read and reread your comments. First of all, I commend you for your plan, and am sorry that you have to learn all these skills. I realize that we have some points in common. For example, I really work on #3, looking forward, not backward. Many days, I focus on just the present. #2, sometimes I do make a fuss. However I really try to state my opinion respectfully and with lots of "I" statements. Finally, #1, my treatment team is an essential part of my life. So I make sure I write thank you notes, share items from races, and regularly let each person know how valuable that individual is. Thanks for sharing in such an honest way.
Maureen
Happy Birthday Maureen! I hope that you are having a wonderful day. Age is just a number and we are lucky to be seniors now, I think.
Aloha Maureen,
Your article really shook me! I forget all the time that my mortality is coming to meet me soon. My numbers get bad, then they get better. I sometimes treat my disease as a game where I just have to keep looking for a better score. As if I can just try a little harder and it will come back.
You reminded me that at some point it won't. This isn't a game that I can hit the reset button on.
Thank you soooo much for sharing this rough part of your road. Reading and writing in the Beacon is keeping me grounded and keeping me sane. It gives me a chance to quietly weep when my fellow myeloma travelers (you) have a setback.
More importantly it reminds me to keep on fighting to enjoy every day. We are all in this together. As you can tell from all the comments, we are thinking of you and we all wish you the best.
Aloha
Tom
Dear Maureen,
Thank you for your very insightful column. I have been reading your columns for some time now and always appreciate how thoughtful, honest, and well-written they are. My mother was diagnosed with multiple myeloma this past December, and she has high-risk cytogenetics (including 17p deletion) that are making this disease very difficult to treat. It's been a difficult journey. She's not eligible for a stem-cell transplant because her myeloma specialists believe that, at 72, she can't handle it, though she's in relatively good health. So we're relying on treatments, hoping they can work as long as possible.
It's columns such as yours that help her keep going, that inspire her to enjoy her days and to have hope. Thank you very much for opening yourself up to the rest of us. My mom and I really appreciate it.
All the best wishes,
Joanna