Myeloma, Party Of Two: Zero Point Seven
Zero point seven. What is 0.7 to you? For most, it’s insignificant, a number between 0 and 1. It’s a mere decimal. It’s not a complete whole, and yet it is more than nothing.
To me, it’s much, much more. It took us a long time to get to 0.7 g/dL (7 g/l).
In December, my husband Daniel’s M-spike reached this all-time low and we were encouraged, for the first time in a long time. I started to wonder if we might get down to 0.0 g/dL. I dreamt of how our lives might change if we could keep him at 0.0 for a year. Wouldn’t it be wonderful if he could go on Revlimid (lenalidomide) maintenance only, with us not having to go to the infusion center for weekly treatment? How freeing! We could go on an extended trip, maybe Ireland or the English countryside. Maybe he would feel better. Maybe he would enjoy going out or feel less stressed at work.
To me, that 0.7 g/dL was more than a number. It was representative of something. A life that I can almost touch. A future filled with promise. A carefree past that I remember.
Zero point seven also represents the fight. The ongoing struggle for minimal residual disease. Within that tiny decimal lies an enormous saga detailing blood clots, failed induction and mobilization treatments, a failed stem cell transplant, a maintenance regimen consisting of weekly Empliciti (elotuzumab) infusions along with Revlimid and dexamethasone, pneumonias, sinus infections, bronchitis, shingles, mystery skin infections, bouts of the flu, and double ear infections. Zero point seven seems like so little a number for so much given in exchange!
2020 is only six weeks long, and we’ve already seen two bugs from the litany of usual suspects that interrupt Daniel’s treatment schedule. I wondered whether the 0.7 g/dL would still be there for us when we returned to see his myeloma specialist. It was also time for Daniel’s annual PET/CT scan. Would his scan results improve from last year’s?
Unfortunately, January showed us how fleeting success can be when you are fighting a blood cancer. Daniel’s M-spike rose to 0.9 g/dL and then lowered to 0.8 g/dL this month. The more telling indicator for him is his kappa-lambda free light chain ratio, which rose from 33.28 to 36.16. He also showed a slight increase in the bright spots on his PET/CT indicating myeloma activity around his largest bone lesion on his clavicle. Last year the brightness measured 4.1, whereas this year it measured 4.7.
Much of this change was described to us as a “slight increase,” probably due to his being off his treatment protocol because of sickness. Daniel’s care team always does a great job of calmly explaining things in a way that tries to make his results sound relatively “normal.”
We hear these types of comments most months, though. I think about the cumulative effects of “slight increase.” Certainly, I realize that it’s better to get the “slight increase” speech than to be one of the poor souls getting the “new tumors” or “we’re out of options” speeches. It’s just that Daniel and I have sat through conversations like this for seven and a half years.
Eventually, you grow numb to the placating words, and the only ones that shock you awake are the scary ones that you never want to hear.
Daniel has recovered from this latest round of illness and has been able to get his last two Empliciti infusions in a row. Hopefully, he will stay well, and with his continued treatment, we will see his numbers go back down in the right direction. Of course, the danger is always that after being on this protocol for a year, its effectiveness may wane, he may relapse, and we may need to find another treatment. My hope is that we can get him to 0.0 g/dL before that happens.
All fantasies aside, 0.0 won’t change the ebb and flow of living with multiple myeloma. Even with a 0.0, his specialist wouldn’t likely take him off treatment, unless he were able to keep a 0.0 for a long time and therefore prove that he was truly in remission. We would still likely have weekly infusions, labs, and trips to the cancer center. It’s strange to have 0.0 as a goal, especially knowing that many aspects of your life probably won’t change. Instead of limbo with myeloma, 0.0 could bring us a limbo waiting for it to return, which would be better than where we are now.
My takeaway from our close call with success? Myeloma teaches you that things are never as great or as bad as they seem. They're somewhere in between.
Daniel’s myeloma means that we live in between tests, waiting to see if we can take that 0.7 for a spin, or if it will spin us.
Tabitha Tow Burns writes a monthly column for The Myeloma Beacon. Her husband Daniel was diagnosed with smoldering myeloma in 2012 and active (symptomatic) multiple myeloma in 2018. You can view a list of Tabitha's previously published columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Thank you for the update and perspective, Tabitha. Hopefully Daniel can continue to make progress, even if it is slow. I agree that we must learn to not get too high or too low in this long journey. I also think all the labs and reports tend to make us focus too much on numbers and not enough on how we feel. It is most important to get stable and get feeling "well" regardless of what numbers we see. I hope Daniel can soon get that stability at a place that he can feel "well" again.
Dear Tabitha,
We so appreciate updates on Daniel’s condition. I can certainly understand your happiness at 0.7 but also the dismay as it rises and falls. As you have told us, Daniel has an extremely tough myeloma. As I read the Beacon and other myeloma resources, I see that there are a myriad of potential myeloma treatments in clinical trials and I remain hopeful for all of us. My heart does break for the two of you as I read of Daniel’s frequent illnesses.
We have altered our lifestyle to the point where we take extraordinary measures when out in public. We wear masks, we wipe down surfaces and we avoid crowds, sick people, and sadly, little children. I am sure even our friends and family think we are nuts, but if these measures keep my husband well, it is worth it.
We will continue to hope and pray for both you and Daniel.
Dear Tabitha,
I believe that being a caregiver is more frustrating than being a patient.
Living in between has become a new norm for both of us, but as a patient we feel more pro-active. It takes a lot of strength to be a caregiver. Each evening I pray that all caregivers are given that strength. We as a community send you all the support possible.
JB
Dear Mark, Patty, and JoAnn - Thank you so much for your comments.
Mark, I agree that all the labs and reports tend to make us focus on the numbers. While numbers are not my comfort zone, Daniel is an engineer, so he is a numbers type of guy! He always wants to go straight to the reports. By contrast, I'm sensitive to the "moods," demeanor, and "reading in-between the lines" with our care team. What they say (and don't say) goes a long way to help me know when it's time to be concerned.
Patty, you sound like me! I swear that I've become quite the germ-a-phobe since Daniel's diagnosis (and especially his stem cell transplant). I have a large bottle of hand sanitizer that I carry everywhere, and I have cleansing wipes too. It must be funny for others to see this woman cleaning like crazy everywhere we go. Recently we had to fly on a plane, and I brought airline seat covers, gloves, masks, wipes – the works! Understandably, no one sat next to us on that flight. We must have looked pretty scary to the other passengers! Ha!
JoAnn, I agree that the role of the caregiver vs. the patient has some subtle but very pronounced differences. Thank you so much for your kind thoughts and well-wishes.
Wishing you all the best in return, and all my gratitude for your support!
Dear Tabitha,
This kind of results going back and forth with the M-spike can be discouraging, but hopefully the results will improve soon. I am wishing you good luck and hope that you can enjoy life even though you are really busy with medical treatments. Thank you for sharing your journey.
Hi Tabitha,
I’m glad Daniel has not been ill the last two months and I hope he stays healthy for a long time!
I started talking to another cancer patient the other day (she has lung cancer) because she seemed really upset. She was almost in tears about being told she needed a platelet transfusion. All she kept saying to me was “It’s just one thing after another”. I kept trying to reassure her that a platelet infusion was no big deal, having had multiple transfusions over the last few years. But I realized quickly it wasn’t really the platelet transfusion that had her so upset. It was the loss of control and the inability to plan for a future that may or may not be there.
Your column recently about myeloma patients never getting to ring the bell was particularly relevant and poignant. I’ve had those same thoughts myself. For those of us with myeloma there is no end to treatment. I have met some myeloma patients whose disease has taken a more indolent course, but for the rest of us the most we get is an interval of decreased treatment, often complicated by recurrent infections or complications sustained from the medications we have to take. It is a difficult life and definitely not one any of us would have chosen.
It has taken me a long time to obtain a certain amount of peace. Prior to being diagnosed, I was a successful busy professional woman and I planned every minute. I had to, to be able to do my job and take care of my kids. Now I live day by day. I get up every morning hoping it will be a good day, and if it is I try to enjoy every minute. If it’s a bad day I try to find something good and I tell myself tomorrow will be better (it often is). I don’t let my disease stop me from doing the things I want to do (though my doctor has forbidden me to go to Antarctica and I’ve caved on that one
lol ), but when I plan trips I get full travel insurance. I try to be careful, I try to not shake peoples' hands, and carry hand sanitizer everywhere, but of course I still get sick sometimes.
I know it’s hard, but I try really hard not to focus on my numbers every month (mine haven’t been normal for a while now, kinda like Daniels, up and down). Because when I used to do that, I found I wasn’t enjoying the time I had, I was constantly worrying and waiting for the next test. I do a little to keep abreast of current myeloma research and try to ask appropriate questions at my doctor appointments, but I don’t comb the literature for information anymore. I check in to the forums every other month or so, but try to focus on other things in my life other than this disease.
None of knows how much time we have left. I certainly hope I'm still reading your columns in a decade, but if I’m not here next year, I want to have enjoyed and experienced every second I have left. And the one thing that myeloma has given me is an appreciation for each and every moment. An enjoyment of each person I meet. Pleasure in my family, particularly in my children.
I don’t know if this helps you at all, as each of us has to find our own way of coping. I hope so though. I do think Daniel is lucky to have you, you are so supportive. Take care of
yourself too!
Nancy and Lynnae, thank you so much for your comments.
Nancy, your well-wishes are always appreciated. I always appreciate your positivity. You're so kind to think of us. We think of you too, and we wish you the best!
Lynnae, I was really touched by your thoughtful post! You have a wonderful outlook. I could relate to your story. I think it speaks well to the journey that many myeloma patients undergo. When first diagnosed, it's a jolt to the system! You have an insatiable appetite to understand myeloma, so you comb websites and journals in an attempt to understand your disease, stay current on available treatments, and look for novel therapies. Maybe you have a stem cell transplant or maybe you don't, but eventually you get past that first year or two of treatments, and the manic pace of managing your disease slows. Eventually, you realize that the treatments will never stop, and this is what life looks like now. It's in that moment that we must find some peace. It sounds like you have found yours, and I am thankful that you shared from your heart with us as well. Wishing you the best!
Hello Tabitha.
Like you said, at the beginning I searched everything to find out about multiple myeloma and asked all the questions I could. Now, four and half years down the track, I am less inclined. Maybe I am in some sort of denial as I try to carve out a "normal" life with MM. The words you used to describe the roller coaster you and Daniel have ridden sound very familiar. You have a simple and clear way of explaining what is really happening beneath the numbers. Thank you for your article. I wish you and Daniel get the best of it.
Over these last few years I have slowly got to know myself better and also what is important. I do have a philosophy which I hope you will not mind me sharing which is: I will probably die from multiple myeloma, however I won't have lost the battle. I will have won by the way I live with multiple myeloma.
Each and every day I aim to live well and find peace, but I also know that I must not be in denial about multiple myeloma or life for that matter.
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