Six weeks ago, I traveled to a new country in my very own myeloma land. For the first time in five years since my stem cell transplant, I experienced clinical symp­toms: low hemoglobin levels, low white blood cell counts, and very low platelet levels. These symptoms are invisible to others. I look the same, but I am ex­peri­enc­ing fatigue, shortness of breath, and bruises without any injury.

The symptoms came as a surprise to both me and my clinical team. This new journey began when I took a six-week break from treatment earlier this spring to undergo an arthroscopic repair on my right knee. I could no longer even walk short distances without intense pain. The orthopedic doctor believed that I had a torn meniscus, which could be repaired by a minor outpatient surgery. This repair was essential to my quality of life. I had given up running, but I was not willing to give up walking.

The oncologist and the surgeon worked together to coordinate the timing of the surgery with my Empliciti ^[1] (elotuzumab), Revlimid ^[2] (lenalidomide), and dexamethasone ^[3] (Decadron) treatment. We planned for a six-week treatment break.

After a successful outpatient surgery, my husband and I traveled with our little camper for a two-week tour of Utah, Nevada, and northern California. I could not walk very far and needed the assistance of hiking poles, so no hiking or biking for me. Yet I had a lovely time being a tourist in the beautiful West. By the end of the two weeks, I could walk a half mile with hiking poles, and ride my bike around the campground.

When I returned to the cancer center at the beginning of May for my scheduled Empliciti infusion, the health care team and I received shocking results from my scheduled blood work. My hemoglobin level was ex­tremely low – so low we had to schedule a blood transfusion. My white blood cell count was dangerously low, and, as the newest wrinkle, my platelets were also critically low.

I was embarrassed to report that I had not noticed any dramatic changes. Sure, I was short of breath going up stairs, yet I avoided stairs on our trip because of my knee recovery. During the previous three weeks, I had been walking very little. My only new symptom was noticeable bruising without any injury.

We also learned that my IgA was 10 times the normal level, and my M-spike had significantly increased. Myeloma cells were crowding out the healthy cells in my bone marrow that produce red blood cells, white blood cells, and even platelets. I had not experienced this phenomenon since my initial diagnosis. The assessment was that the vacation from the new treatment was the culprit. The medical team decided to keep me on the Empliciti treatment and reevaluate the plan in a month.

My life changed that day. Again. My protective layer of denial exploded. I realized that I really do have a chronic, incurable disease.

The next few weeks were a blur. Each week, I would have my blood drawn, then wait impatiently for the results. I became too familiar with the cancer center, sometimes visiting twice a week.

How have I responded to this change?

Fear and worry invaded my and my husband’s world. The day I required a second blood transfusion was particularly traumatic. It is clear that the multiple myeloma cells have become more aggressive, so we ask ourselves: What does this mean for the future? Will we need to try another new drug? Will that treatment work?

At the same time, I realize that life goes on. I am adapting to the new normal. Although the lab values are invisible, I now pay more attention to my level of fatigue and shortness of breath. Of course, Revlimid, my old friend and nemesis, causes similar symptoms.

So how am I coping?

I focus on swimming, biking, and walking. Twice a week, together with other women of my triathlon team, I concentrate on different numbers, such as intervals, cadence, heart rate, or miles per hour, in preparation for a sprint triathlon in August.

I also make sure that I am mindful of my surroundings. Our Colorado valley in the early morning is full of wildflowers, rabbits, leafy trees, red bluffs, and sweaty, laughing women of the triathlon team. Did I mention laughter, good cheer, and encouragement for everyone?

What doesn’t work anymore is competing with my performance from last summer. Neither can I compare myself to anyone else on the tri team. This is a real challenge because I am good buddies with many strong athletes. After the knee repair I had to set modest goals. I still need hiking poles so I don’t limp, and I am in aggressive physical therapy. Recently, I completed my first 5K race since the surgery. Even though I came in dead last, it really was ok. I enjoyed the completion of a hard race. One advantage of coming in last is that I enjoyed loud cheering from all my team mates.

I am no longer waiting for the lab numbers to decide what kind of day I will enjoy. If I feel fatigued or short of breath, I take a nap or read a good book. I try to stop chasing numbers right now. Even when I am training, I take breaks from the workout numbers, paying closer attention to where I am.

When I was biking this morning, I spotted a red tail hawk and a fox running across the field. The fears dis­si­pate for minutes as I watch the soaring of the hawk.