From Kathryn:
On July 20, 2015, my mother passed away after battling lung cancer. Within the next month, I started developing horrible mouth sores and was extremely tired. I chalked these symptoms up to stress due to my mother’s death at the age of 66. You probably would, too. The mouth sores and exhaustion did not go away. Instead, they were joined by shortness of breath, nearly daily headaches, unexplained bruising and the constant sound of blood rushing in my ears. I did not have a regular doctor, so I tried to get in a few places, but the waits were months long. I finally called an old practice; the doctor I had seen there had moved to a new group, but the nurse practitioner was able to see me.
My appointment was on Wednesday, September 30, 2015. The NP thought my symptoms were being caused by anemia and took a blood test. I was told the results would take three to five business days. It being aWednesday, this meant I would have results no sooner than the following Monday. I got in the car after the appointment and called my husband, who asked what the NP thought was causing the anemia. It hadn’t occurred to me to ask. That evening, I went online and self-diagnosed myself with leukemia. Every symptom matched. On Thursday, October 1, 2015, I woke up with a huge new bruise on my leg. I couldn’t remember having bumped it on anything. Feeling increasingly confident that something was wrong, I called my husband and asked him to contact our dear friend Dr. Jonathon Cohen, who is a hematologist oncologist at Emory [University] who had recently completed his residency and fellowship at Ohio State. Jon told Andy that if it were his wife having these same symptoms, he would take her to the ER at the James, so that’s where we went.
The triage nurse at the ER told me that she could tell I was anemic just by looking at me. She had never met me before. After my blood was taken, we were told that if I was called back quickly, it was bad news, and if we had to wait a while, it was likely good news. I was called back within twenty minutes of my blood draw, and within hours, I had a diagnosis of AML; probably APL, which could be determined with a bone marrow biopsy. I was admitted to the 15th floor at the James that afternoon, where I would stay for 28 days. The APL diagnosis was confirmed after my first bone marrow biopsy. On my middle son’s fifth birthday, October 28, 2015, I was sent home. For the next eight months, I continued my daily treatment outpatient at the James, four weeks on, four weeks off. I have had countless blood transfusions; I had to have my nose packed for chronic nosebleeds. I lost (and finally regained) nearly forty pounds. I had countless infusions of arsenic and took ATRA pill after ATRA pill, until I thought I was going to choke on ATRA pills. There were days I had to play “Fight Song,” by Rachel Platten, just to keep myself going. It’s ironic that arsenic saved my life, but it did. My hair thinned severely, my skin and nails peeled and broke and were weak for a very long time, but the ATRA that I thought might choke me helped save my life, too. I had three bone marrow biopsies over the course of my treatment. Only one of them showed any cancer.
It takes a village, and I could not have survived without mine. Especially when you have young children, cancer will turn your world upside down. At the time of my diagnosis, I had a seven year old second grader, a four year old preschooler, and my daughter was 21 months old. I stay at home primarily, so we had to scramble to find someone who was able to take care of the kids while I was in treatment, which was no easy feat. There were meals to be cooked, children needed to be driven to activites and school, and homework needed to be completed, not to mention finding time for my husband and kids to come visit me in the hospital. On the day I was diagnosed, I was told two things that have stuck with me. The first is “If you have to get cancer, APL is the one to get.” The second is that if I had not gotten to the hospital when I did, Acute Promyelocytic Le ukemia could have caused me to bleed out internally and killed me. I credit the doctors and nurses at the James with having saved my life. Without them, and without the research of organizations such as LLS, I would not be here today.
Thank you to the researchers at LLS for helping to save my life. I am beyond lucky and blessed, and I am eternally grateful.