Myeloma Dispatches: In-Between Times
It's December 2015 as I write this, and I am enjoying my in-between time.
For me, in-between times are the months between treatments – times when I can almost forget that I have multiple myeloma.
I have been in and out of a variety of treatments since I relapsed in 2013. The good news is that all the treatments worked for a while. The bad news is that all the treatments worked only for a while, or the side effects became so awful that I pleaded to stop the treatment.
Unfortunately, my myeloma cells multiply whenever I am not receiving treatment. This is the nature of multiple myeloma for many of us. How the myeloma team knows when it’s time for me to return to treatment is the elevation of immunoglobulin A (IgA) in my blood.
Over the last year, my myeloma specialist determined that, in my case, a high IgA correlates closely with a high percentage of myeloma cells in my bone marrow. To my relief, this means no more bone marrow biopsies. Instead, I just have my blood drawn for the IgA level.
Here is the paradox of my life. Within two months of no treatment, my IgA rises to more than six times the normal level. Each month, as I await the IgA results, I check my body. Nope, I do not feel sick.
Last summer, when the IgA had reached a new high, my son asked my favorite myeloma doctor “How long before my Mom will get sick again?” “No one knows,” was the answer. The argument is that I would be much more difficult to treat if we waited for symptoms to appear.
I should be relieved because, at the time of my diagnosis, I was severely anemic, with weakness, shortness of breath, and fatigue. My bones were at a severe osteoporosis stage, and I experienced a pathological fracture of my humerus because my bones were soft. I felt ill. Now my symptoms are muted, and I have to rely on lab tests to monitor my progress. I struggle with the chronicity of this disease.
For the months of September and October, I agreed reluctantly to return to treatment. Two days a week, back to back, I received the infusions of Kyprolis (carfilzomib) and dexamethasone (Decadron) for three weeks plus daily Revlimid (lenalidomide). The fourth week was treatment free. I repeated the cycle in October. I had received the same Kyprolis regimen in May and June already, but this time side effects worsened. The most troublesome were nausea, vomiting, constipation, and diarrhea.
Yet the care I received was excellent. The nurses, pharmacists, and oncologist tried a variety of strategies to minimize the symptoms. By the second month, I experienced lessening of the side effects with a combination of drugs. I also used visualization techniques during the procedure as well as acupuncture and massage before or after treatments.
The second month was difficult, but I felt safe and cared for by the professional team. Friends checked in regularly. Exercise, including participation in a local “cancer walk and talk” group, helped. Journaling worked too.
The two months passed, my IgA dropped to almost normal levels, and the treatment team supported my decision to take a break in treatment.
Similar to previous breaks in treatment, my husband and I used the time to travel. This time we toured Zion National Park in our little camper, running away from winter. We hiked a lot, exploring the majesty of nature. I focused on training for a 10k race. Mostly I enjoyed being with my best friend, my husband.
As in previous in-between times, my mind was clearer, my body stronger, and my emotional state more even, and I thoroughly enjoyed it.
In January 2016, I predict I will return to treatment. The myeloma team may try one of the new drugs. I am prepared for this return.
Over and over, I learn that I possess many skills to cope with the challenges of drug therapy. Each day I continue to be grateful for being alive.
Here is a poem that I wrote recently about my in-between times:
In-between times are when I live
Leaves glow, wind awakens
My mood lightens as I step into the outside world
During times of the poison,
My passport for the well world gets canceled,
I move into the interior world of ill
Embrace sleep, books, wine
Focused on my body, I forget to look anywhere else
Joints ache, private symptoms appear in public without my permission
In-between times, I choose to live
Gulp down life with hikes, bikes, and poetry
Laugh as much as I can
Ignore the coming threat of the next infusion
I look for signs in the clouds
Will the wide blue skies tell the answer?
They tell me that this poison is keeping me alive
And I look really good
Wide blue skies,
Is this good enough living?
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 .
Diana Barker, So glad that you are still in remission. Thanks for your kind words, poetry is my new craft and I am enjoying the journey. As for triathlons, I don't run, I walk fast. I just enjoy the process of training and the excitement of the race.
Maureen
Hello Diane, Always nice to hear from another nurse. I do enjoy the absence of work stress and I have to remember that. Glad the Velcade and dex are working for you. Your comments encourage me to keep writing.
Maureen
Loved your article, and your poem, Maureen. I too had to quit my work at a hospital after 30 years, because of having treatment. I had my stem cell transplant in May 2012. I was diagnosed with MGUS in 2009 and then my M protein spiked 2011 so started treatment November 2011. I am in remission thank God, but always at the back of my mind I wonder when the myeloma cells will return. I have my blood work and consult with my oncologist every three months now. We live in Canada, but at present we are in Florida for a few months, to get away from the cold. I wish you good continued success with your treatments and a healthy 2016. I too am 71 years and I think its remarkable that you are still competing in triathlons. I too love to cycle and hike with my husband, but run? I wish I could. All the best and I so enjoy your writing. Diana
Hi, Thank you for your article and poem as you expressed so well how many of us feel. I'm lucky at present that I am just on Velcade and dex every other week which gives me a little longer to enjoy the time in between. I find it hard not to think about what is to come. I too am a nurse and stopped working after my last relapse in the fall of 2014. I have to admit that I enjoy not working and not having the work stress had been helpful. Best wishes for the New Year! Diane
Thank you for another interesting column. Gotta love those "down times" from treatments.
Thanks for the thoughtful column, and the nice poem, Maureen. I am sorry to hear that there is such a contrast between being on treatment, and not, for you. Your 'in between' good times sound nice though. I am now on continuous treatment with Revlimid and dex, although I have the fourth week free of the Revlimid, which helps to clear my mind. The medical consensus seems to be for me to stay on treatments, even though I am doing well with very low blood counts. Like yourself, I am really glad to be here still and enjoying life for the most part! (But I think that your treatments of Kyprolis plus Revlimid and Dex are probably more difficult to have to take.)
Thanks, Nadine, for your understanding of how important the "down times" are to all of us.
Nancy – I'm glad your routine of Revlimid and dex is working for you. That stopped working when I relapsed 2 years ago. I will talk to my favorite myeloma expert about one of the new drugs because I don't want to return to the Kyprolis regimen. I enjoy your column too and look forward to reading it each month.
Great poem and column. Here is to hoping your prediction will be incorrect, and that you'll have a nice long remission to start 2016!
Dear Maureen,
When I saw your sweet smile, I instantly felt better. Then, after reading your article and poem, I feel like I'd like to spend much more time around you enjoying your serene calm. Thank you for sharing your gifts with readers.
I started daratumumab on December 22, 2015. Tomorrow, I'll have my 4th infusion. I have IgA multiple myeloma and was diagnosed in February 2014. At first Revlimid, dex, and Velcade got me into a brief remission. However, I haven't enjoyed remission since, and I pray the new drug will halt the progression of the cancer.
Please continue writing your columns (and poems)! Happy 2016
I knew you are a great nurse, because I knew you then. I knew you are a great mother, because I know and love your kid. I knew you are a survivor, because ... duh. I did not know you were a poet. xo
Hey Maureen,
Thank you for helping me understand clinically how the regimen of your treatment cycles define your in-between times. I've always known you to live full-throttle, but when the poison that heals you comes knocking again, "embrace sleep, books, and wine" and look forward to "gulp down life" again – especially the wine – and keep writing!
Hello Patty – Thanks for your kind words. However, honestly, I only enjoy brief moments of "serene calm" I will talk to the myeloma expert about what the new drug will be in January.
Also, to Mark11 – Unfortunately my latest IgA is at a new record high. So I will be starting treatment again in January.
Maureen
Hello to my friends Gail and Hank.
Wow, someone who knows me outside of the myeloma world. Your words are so encouraging. Writing my poetry is my new challenge, so thanks.
I will be starting treatment again soon, so time for writing.
Maureen
Hello Maureen.
Thank you for writing such a great column. I am about to start a new treatment, carfilzomib and dex. You mentioned you were taking this treatment, but may be started on a different new drug. I was wondering what would be available if carfilzomib doesn't work.
Thank you.
Sincerely
Valerie
Maureen,
Do you have high risk myeloma?
Hello Valerie - Thanks for your kind words. I am not qualified to answer which drug would be the right one for you. This is a question for your myeloma doctor. The hopeful news is that there are new drugs just recently approved in 2015.
Jan - I do have high-risk myeloma because of the genetic profile of my disease. I have translocation t(4,14) and deletion 17p.
Maureen,
I also have 17p deletion. Your story gives me great hope and I'm going to follow your writings. I'm on maintenance therapy now, diagnosed May 2014. No SCT yet.
Maureen, These are my sentiments exactly. I really enjoy my time off of the myeloma drugs. I try to live each day to its fullest. The days I feel good, I cherish. I'm on a break now, just had my SCT in October 2015.
To my friend, my mentor, and my hero;
Beautiful writing and stunning poem. I think about you often.
Connie
Thanks for your articles and poem. I have been waiting and watching with MGUS for six years. I got a call from my oncologist last week saying that she had sent my bone biopsy findings to Mayo Clinic to get a second opinion. This is a good thing for me because I might get some help. This biopsy that she was referring to was done in 12/13/13. Nobody had even took a look at it. My oncologist was on maternity leave when this biopsy was done. I live in one of those small towns that you don't have much to choose from when it comes to doctors. I an not a doctor, but I had read the biopsy myself and knew that I had progressed to multiple myeloma. I am now waiting on some blood work and a skin biopsy to see what she might be able to do.
Thank you for writing about your issues so people like me can have someone that can relate.
Ella
Thanks to Connie. Your opinion means a lot to me
Maureen
Hello Ella Hackey,
Your story was disturbing to me, how you have waited over a year for a definitive opinion. Your next challenge is to find a physician that you trust, even if you travel some miles.
Maureen
I am so happy that I found this website where I can read about other people that are understanding about multiple myleoma. My friends and family have no idea what I am talking about when I try to talk about it. Good luck and I will be praying that your treatment goes well.
Ella
Maureen, thanks for this excellent column. There are differences between our experiences, but also some major similarities. For instance, the key measure in tailoring my treatment is also the IgA reading. Reading about getting the latest number every month really felt familiar. If you are on treatment again now, I hope it is going well.
The phrase you quote, that "no one knows" when we will get sick again, is really at the heart of what makes myeloma such a difficult thing to deal with. Very well said.
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