Myeloma Dispatches: The Gift Of Blood
I am lying in a windowless room with dark red blood dripping steadily into my body. I do not want to be here. Yet here I am. Once again I feel that I’m traveling backwards in time. Six years ago, I was diagnosed with multiple myeloma after having severe anemia. Right before and after my stem cell transplant, I received multiple infusions of packed red blood cells and platelets. That time remains a blur for me. Time travel can be.
Yet in the five years since my transplant, I have not needed any blood transfusions. Although I did relapse at the predicted two-year mark, I have been without clinical symptoms. The IgA level would rise, plus the dreaded M-spike would appear in my blood tests. Then the myeloma team knew it was time to change treatments. The decision to change treatment protocols was made based on my lab numbers, not symptoms. I only felt sick because of the treatment, not because of the cancer. I have now been through five lines of treatment, and all have worked for a while.
This summer, however, I have experienced significant changes in my multiple myeloma journey. I now have real symptoms. As I described in my July column, the disease is crowding out the cells in my bone marrow that produce red blood cells, platelets, and white blood cells. I am anemic, covered with bruises, and very immunocompromised.
So here I am, lying in a windowless room with dark red blood dripping steadily into my body. I received two units of packed red blood cells to be exact. My hemoglobin was dangerously low, and I was becoming short of breath with minimal exertion. Usually I would receive the transfusion in the cancer center, but the decision was made quickly and the regular infusion spaces were full. The room I’m in is really just a regular exam room pushed into service.
This was the first of three blood infusions I have received so far this summer.
The first one was traumatic, because I realized I was getting sicker. I coped by reading and using various visualization techniques. Over the next few days following the transfusion, I experienced more energy and less shortness of breath. I could resume my training of swimming, biking, and walking. Maybe the blood was a gift.
I needed a second blood transfusion just a month later. This time I had noticed I couldn’t even walk two miles without stopping every few minutes to take a breath. And I really wanted to complete a 5K run one week later. It was a tradition for my team and a tradition for me. So I asked the health care team to check my hemoglobin. Sure enough, the hemoglobin had dropped again; not as low as last time, but definitely low enough to cause my symptoms.
At first I was really discouraged. A second blood transfusion in a month? What does this mean? The oncologist and the pharmacist reminded me that the Empliciti (elotuzumab) I was receiving is a targeted immunotherapy. Since the drug utilizes my own immune system, it might require more time to work. My IgA was dropping, but not dramatically.
This time for the infusion I got a room with a window, and I had a better attitude. One week later, I completed the 5k run with another cancer survivor. We were dead last. We decided that a better description would be last, but alive and walking. This time I did view the blood as a gift.
My third blood transfusion was just last week. This time I mastered the decision. Once again, my hemoglobin was dropping, platelets were really low, and I was immunocompromised with a low white blood count. I was covered in bruises, and barely able to slog through my workouts. I had trained slowly but steadily all summer to complete a sprint triathlon on August 7.
Before you think I am crazy, let me review this particular race. This is the race in which, six years ago, I was able to sense something was wrong with me. I believe this race helped save my life. This is the race that I have trained for with my triathlon team all summer. This is the team I have been part of for 15 summers.
This year, 55 women traveled to Denver to complete this race. Twenty five of them had never completed a triathlon. Within the team, there are many examples of courage in the midst of life challenges. There are seven cancer survivors, three of us are currently in treatment. I learned that two young women have diabetes; each need to check their blood sugar when they complete the swim, bike, and at the end. Several could barely swim, and had to conquer the fear of open water. The laughter, the courage, the comradery of this group fill me up with hope.
And last but not least, a major portion of the proceeds from the race go toward breast and ovarian cancer prevention and education.
This race is a yearly gift for me.
So my oncologist timed the blood transfusion a week early. We moved the Empliciti transfusion to the Monday after the race, instead of the Wednesday before. I skipped two nights of Revlimid, so nausea and diarrhea would not interfere with the race. This time I knew the blood was a gift.
The race itself was a gift as well. A gift of joy. Every woman completed the triathlon.
At the dinner before the event, the coach gave a speech building on the Olympics. How we had already earned a gold medal by facing challenges of parenting, health issues, work, and even money to be here this weekend. I shared a poem, using the green and purple butterflies on our uniforms as symbols of hope and courage.
The next morning, before sunrise, we biked two miles in single file to the venue. The sun rising over the water was a sight of immeasurable beauty. I savored each moment, letting go of any time goals. I knew this might be my last triathlon.
The day was cloudy and breezy, perfect for a triathlon. I did successfully complete the half-mile swim, 12-mile bike ride, and 3.1-mile run/walk.
Joy awaited me at the finish line. I am not just a cancer patient, I am also a triathlete.
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 .
Awesome.
Maureen,
You are also one very determined woman – and an inspiration! Thanks for sharing this.
Congratulations on your accomplishment. I don't know how you do it!
Maureen,
Your story brought tears to my eyes. You are an amazing woman. I wish you continued strength in your journey, healing, and many more races!
You give us all such inspiration! I admire your courage in spite of all you have been through! Congrats!
Keep pressing on! Thank you for sharing with us!
I've followed your column since my 54 year old husband was diagnosed in December 2015. You are amazing and inspirational. Sending you happy healing thoughts.
Go girl, I'm with you on our journey.
You are an inspiration to us all, Maureen. I wish you all the strength and hope in the world. We are all rooting for you, including my mom, who was diagnosed with multiple myeloma last December and has looked to you as a beacon.
Wonderful!
Your latest column is inspirational and comforting, and it also points out the significant psychological effects of the physical surroundings in which treatment is given. You didn't mention the psychological effects of the attitude of the treatment administrator(s) - which I am certain you are aware of as well based on my own experiences over the last two years following diagnosis, an autologous stem cell transplant, and ongoing treatment. Many are great in exuding a positive attitude and expressing interest in the patient as a person (and more specifically a person in significant distress owing to their life threatening physical condition). And many do this in spite of their own personal and family problems, which makes their concern and sacrifices for their patients even more valued and respected. Thank you for taking the time and effort to write you column and may God continue to bless you.
That is outstanding!
Congratulations on your "gold" medal for completing a triathlon under such circumstances. What courage and determination! You are an inspiration to all of us. I am sorry that your myeloma has progressed, but I am also hopeful that your current treatment regimen will work for you. There are so many more tools for myeloma specialists to use in fighting this disease. Keep running and keep doing what is necessary to battle myeloma. Also, continue to share your stories and experiences with us - we truly appreciate them.
Maureen: I can't believe you did this with such anemic challenges – and completed the race, finding joy in it all with so many wonderful women. I too am IgA in constant treatment; Darzalex has helped me considerably. Keep going and enjoying everything physical.
Thanks for this amazing column, Maureen. Blood transfusions are the gift of life, and hope you get back on track soon with the treatments. The sprint triathlon sounds really interesting. You are an all round athlete; glad you could finish it! Good luck!
I am so very proud of you for this great accomplishment. I was tired out just reading all that you went through to complete and be a triathlete. Congratulations, you truly deserve it. My thoughts will always be with you through this long fight you are fighting.
WOW! That is an amazing accomplishment. And "Thank you" blood donors. I used to be one prior to diagnosis and I never really appreciated how I was helping others.
Thanks Maureen,
I was about to excuse myself from a training run. Just a mile and a half but a distance that had become a challenge since 2012 stem cell transplant. I'm heading outside to run and I pray for your rapid return to the track.
Dear Andrew, Linda, Terry, Nancy, Doris and Si Si,
Thanks for being my cheerleaders, it means a lot that you read my column and don't think I'm crazy for trying a triathlon. My numbers are still lousy, but I look and feel ok. Thanks for the encouragement.
Maureen
Maureen
You do know that excessive exercise weakens the immune system! All of us MMers would like to carry on as when we were healthy. However, we are walking a tightrope, and perhaps a new normal is something to think about. There is no doubt in any of our minds that you are a gutsy lady, but remember, we want to survive for the long term.
Nice article Maureen! Great images. So glad you felt well enough to enjoy this with all of us. My privilege to be your roomie! Thanks for being my car navigator. So glad no chairs fell on your feet this time! We sure had fun! Congrats and lets keep pushing back on this cancer!
Outstanding management of your abilities and disabilities, I am so glad this turned out well for you. Rest is wonderfully healing too! All the best Maureen!
Amazing. Inspiring. Dedicated. I love reading how fellow mm'ers keep living their life even with myeloma. I have done a few charity bike rides (200 km) and some other stuff after my diagnosis that no one really thought possible, and I plan to keep living like that. I have not started treatment for my relapse yet, but it will be in the next few months or so.
Such an inspirational story! What a sense of focus and determination!! Thank you so much for sharing.
Ron
Congratulations Maureen, you give me the inspiration to try a triathlon. Keep up your positive outlook and I wish you good health.
Congratulations, Maureen! You go, girl! Hopeful the Empliciti kicks in soon and kicks the myeloma cells out! God bless and keep a watch over you in this coming week. I have always challenged by circulatory system throughout my earlier life. I have been helped at these times by a very active cell replacement ability. I bet you have bits of this also.
Marcia
Hi Maureen,
Just want to add my congratulations to those you've ready received.
I admire your determination and grit. One of the challenges we face is finding where our limits (physical and mental) are. I guess that's true for everyone in life, but I've become much more aware of this fact since being diagnosed with multiple myeloma 3 1/2 years ago. You don't know what you can't do until you try and fail. Several times.
So I admire you for trying AND succeeding. Keep up the good work. And best wishes for success with your current line of therapy.
Mike
Thank you for the opened window into your world. Reading your columns grants me entrance into a view of what you're going through. Your strength and courage rocks me to my core.
Nora
Hello readers, I've been out of cell service, so I am behind on my responses. I could read, but not reply. Don't take this as lack of interest.
Frank - Solid encouragement to keep walking. My anemia has worsened so the tri seems far away; needed the reminder.
Mark11 - Your comments present a different perspective, so I will be conscious with gratitude, for the donors keep me healthy.
Lynne - Thanks for the cheer. Weaker now, so its good to revisit my 3 week old success.
Nancy - I always find your words meaningful, so your positive words mean a lot to me.
Suzanne - Darzalex may be the next drug to try as the Empliciti is not working, so your positive response is encouraging.
Patti - Your positive comments on my column are important to me. I am focusing more on my writing as I am now slower and weaker.
Thank you all for your kind words. Remember we are all part of a supportive community.
Maureen
Eric - Your comments are a painful reminder of our myeloma tightrope. At this stage, I have to say I am more interested in quality rather than quantity of life.
Nancy - My friend, my roomie who is my fellow traveler in this cancer journey.
Kathym - Thanks for the recognition, and I'm resting a lot now.
Alyssa - Keep doing those bike rides, 200 km is amazing.
Ron Harvot - Thanks for the cheerleading, much appreciated right now.
Diane - You could do a sprint with training. I walk now instead of run. Is that a metaphor for multiple myeloma.
Marcia K - Thanks for the encouragement. Empliciti is NOT working so a new treatment protocol is needed. But I was able to participate in a wonderful writer's course in beautiful BC, Canada.
Mike - Your comments were insightful and personally meaningful. I needed a reminder that failure is part of the process of trying.
Wow, so many lovely posts, I am so glad to be a part of this supportive community. Maureen
Dear Nora, I am glad that you are willing to look through the window of my world and try to understand it.
Maureen
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