My journey with multiple myeloma (MM) began at 42.
Newly divorced, German native with all my family still in Germany, mother to Max and Kaylee, then 10 years old, I was in a lot of pain coming from my rib cage and lower back. Busy with a full-time job, raising kids, and rushing from football and cheerleading practices, I kept ignoring the pain until it wasn’t to be ignored any longer, as the pain became so severe that I couldn’t speak and breathe without tremendous pain. After a battery of tests and biopsies, I got the diagnosis — MM. MM is a terminal diagnosis with a life span of about 17 years from the date of diagnosis, as per Dr. Google. My oncologist, Dr. Dyar, was very surprised at how I ended up with the cancer diagnosis as I was very young and didn’t fit the mold of such cancer as it is more common in African American males, 65 years of age, and overweight. By the time MM was discovered, the cancer had eaten away a substantial amount of one of my ribs and had taken up residence in my lower spine, which explained the unbearable back pain. I ended up being stage 2 but on the high end and stage 3 is considered the end stage.
I needed a life-saving bone marrow transplant quickly but not before going on my already planned girls' trip to New York. I believe Dr. Dyar realized that day, he had a rather different cancer patient in his care. I received Neupogen shots to grow my bone marrow as I was my own donor for the bone marrow transplant. Meanwhile, I kept hitting the gym as usual, which resulted in me on the floor with a broken rib while trying to out-deadlift my former max, even after Dr. Dyar recommended I stop or take it easy. However, Germans are NOT known to be stubborn, or are they? I realized quickly that I needed to pull back just a tad and show grace to myself. Scaling back doesn’t mean stopping . . .
In May 2015, I had my first bone marrow transplant at Emory in Atlanta. I was told by the doctors that the more I walked, the quicker I would get to go home. I walked seven to eight-mile loops around the transplant unit, and boy, was I walking. On the day of my transplant, I only made four miles, as for most of the day I was flying high on Benadryl. I had promised Max and Kaylee I’d be home in 16 days, that was the minimum amount of days I needed to be there, but I developed a fever and had to extend my stay at the luxury resort for two more days.
The years after, I spent on maintenance chemo and lived like nothing ever happened until 2018, when closely monitored bloodwork showed an M-spike and another bone marrow biopsy confirmed; the cancer wanted a round 2. The diagnosis hit hard, as one knows now what it takes to go through this again. I used to be a blonde all my life, but after losing all my hair in round one, I became a brunette. Only God knows what round two would bring. Now, a kind-of-self-proclaimed pro at this, I wanted to be in control and decided to get a head start and booked myself an appointment at the barbershop. Shout out to Bacano Cutz, who when I entered the shop, the music stopped. I tried to explain that I wanted it all buzzed off, and he asked me over and over, “But you want it all buzzed off, like really all your long hair, off, like gone-gone?” I said yes, like Britney Spears gone, and motioned the clippers on my head. He then pulled up my long hair in the back and started underneath and asked, “Like this?” I answered, “Shorter!” As short as your clippers can go. I told him I was fighting cancer, and I would lose my hair anyway, so I wanted to be the one to decide when it would happen. He now understood and patted me on the shoulder and said, “Girl, you got this.” After a group photo with all the barbers in the shop, I emerged looking like GI Jane and ready for whatever round two had in store for me.
My second transplant was easier as I already had collected enough stem cells the first time around. Call it German efficiency or great planning by my oncologist, probably the latter.
I had an outpatient transplant here at St. Francis Cancer Center and recovered at home for the next 90 days. I had to be in the bubble once again, and the world learned what the bubble meant in 2020 due to COVID-19. Everything went great, and I was back on maintenance therapy with chemo. Until 2023 . . . when once again I heard the dreadful words, “Babette, you need to put up a fight again.”
I’m not going to lie, the first words out of my mouth were, “NO, I’m done. I want no more treatments, I had it. Done. My kids are now in college. They don’t need me as much as they did before. I can’t, I won’t, I give up.” Dr. Dyar, my oncologist for over 10 years now, let me have my moment and said, “Okay, I will let you sit there for a minute, but then you will get up, and we are going to talk about the next steps as quitting is not an option. Of course, it’s not but also easier said than done. Fighting is hard! The fatigue is so overwhelming that peeling oneself out of bed to go to work on a daily basis seems at times impossible. Yet you do it, just to get there and have such brain fog you forget the points you are trying to make in meetings or look at your long-time co-worker and forget his or her name. Thankfully I work at BMW now, where the names are printed on our shirts, and I can always peek at that. These are just a few side effects that happened to me frequently, but other fighters endure so many more side effects that really mess with quality of life. So, really, who am I to complain?
So, to make a long cancer story short, I’m no longer eligible for a bone marrow transplant as the human body can only endure two, and now I’m in line for a clinical CAR-T trial adventure, soon to come.
Babette
multiple myeloma (MM)
