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.