Hi, Lori:

My story began one year ago on Jan. 25th, a year to the day after my husband’s diagnosis of a malignant tumor in his sinus cavity. In December, 2019, I decided to retire early at age 60 because of his diagnosis, wanting to spend more time with him (although he was cancer-free by then). We planned to spend the month of February, 2020 in the Palm Springs area. However, I was experiencing shortness of breath after going up stairs and very fatigued, which was very unusual for me. I went to Urgent Care just 4 days before we were scheduled to leave for Palm Springs. After several tests, I was told I had Acute Myeloid Leukemia, and that I needed to be admitted to the hospital for “about a month”! Of course we were both shocked and felt like it was a cruel joke -one year after my husband’s diagnosis? We knew nothing about this disease, but we quickly learned that chemo would be needed to get me into remission before a bone marrow transplant could be done. We were also told that we would have to relocate to Rochester for 100 days so we would be close to the Mayo Clinic.

Unfortunately, the first induction chemo (7+3) only killed off about 50% of the disease, so I had to have another chemo regimen (MEC). That treatment got me down to about 15%, but not low enough for the transplant, so they put me on Venetoclax (Venclexta) and shots of Vidaza (Azacitidine). These two drugs got me down to less than 1%, low enough for the transplant.

My BMT was scheduled for mid-June in Rochester, so we rented a condo there for 3 months and went down on June 1st for testing. Unfortunately, the cytogenetic test results showed two abnormal chromosomes, so the BMT doctor decided to postpone the transplant and put me back on the “two V’s” to kill them off. We moved back home to the Twin Cities for a month and then moved back to Rochester for the transplant on July 22nd. It was really disappointing to postpone the transplant because we had mentally and emotionally prepared ourselves for the move and the 100-day stay, only to go home for a month and then pack up all over again!

The transplant itself was very anticlimactic - done in less than an hour, just like a blood transfusion. Afterwards, however, I had issues such as mouth sores, lack of appetite, weakness, light-headedness, diarrhea, rash, and nausea/vomiting. This lasted for about a month and then got better. Some of this was related to meds, some to GVHD. During this time, I was going into the clinic every day (and was hospitalized for 12 days due to a fever), but eventually was going twice/week.

My recovery was going so well after a couple months that the doctor let us move home about 3 weeks early. I was walking up to 2 miles a day, eating and sleeping well, and not having many side effects. However, we had to isolate ourselves from friends and family due to COVID. I was very lucky to have a retired husband as my caregiver who could pick up and move at any time, and drive me to the daily, biweekly, and bimonthly. We are lucky to live 1-1/2 hours from Rochester, so we can usually drive down and back for tests and checkups in one day.

Unfortunately, I developed pneumonia and acute respiratory failure in late November and was hospitalized for 17 days, part of the time in ICU. After being released from the hospital, I was very weak from being in bed all that time, so I had to rebuild my strength and gain back some weight. I now feel like I’m back to 100% but it has taken almost two months. Of course, I would like to do more and see more people because I’m feeling good now, but COVID is preventing that.

Needless to say, it has been a very long, stressful journey since my diagnosed a year ago, but I am thankful and lucky to have a devoted caregiver and a large support system of family and friends who have helped us throughout. My only advice for others going through this is to focus on one day at a time. There will be twists and turns, but that is out of your control, so just take things as they come.

Thanks!
edb1123