In 2015, my mom was diagnosed with Stage 3C ovarian cancer. Over the years, I saw her go through multiple rounds of chemotherapy and handle it incredibly. She was so positive, so energetic and didn’t let it ruin what she loved to do. Even through hair loss and side effects, she still played tennis whenever she could. When one treatment path would fail, she was given months left to live, but my dad researched clinical trials and studies and found her spots to try new options. Between 2015 and 2020 she was given 6 months to live one time, 4 months to live another time, 2 months to live some other time. She defied all expectations. Even when she came home on hospice care on a Wednesday, the goal was simply to keep her alive for 2 days until Friday when her sister arrived from Korea. She ended up living another 27 days and passed on September 9, 2020. Watching her go through multiple rounds of chemotherapy and surgeries was inspirational. She was an incredible woman.
During her time with cancer, at the end of October 2018, I went to urgent care because I had jaw pain that was so intense it was keeping me up at night. The doctor said it was probably TMJ, to take some Motrin and go home. Over the next few weeks I had random pains that lasted a few days and went away (collarbone, knee, shoulder). Then December 1, I had wrist and elbow pain that was so bad it kept me up again. I went back to urgent care and this time they drew blood. As soon as the results came back they sent me to the ER.
On December 2, 2018 I was diagnosed with Acute Lymphoblastic Leukemia (ALL). What I was feeling wasn’t joint pain, it was bone pain. 95% of my bone marrow and 80% of my peripheral blood was immature cancerous white blood cells. Normal white blood cell count is 4000-11000 and mine was 33000.
I was transferred to City of Hope in Duarte for my treatment. I was worried about chemotherapy, especially because some of the side effects I read about from the various drugs were pretty extreme, but I experienced no serious side effects. Any time I felt a little discomfort I would tell my nurse or doctor and they would give me something to fix it right away. I would advise against Google and WebMD. Most people know that already but curiosity got the best of me and scared me to death when there was really very little to worry about.
I had so much support from my family during this time. My parents visited, my kids and wife visited every weekend, and my sister Nic, their husband and baby even moved to California to be with me because Eric’s parents live close to the hospital. My sister in law and her family were great as well, letting me stay at their house during my outpatient treatment when I had to go to the hospital 4 days a week.
This was pre-Covid and it was really hard to walk around with a mask due to my weak immune system and be extra careful around everyone and everything to avoid germs. I still can’t eat raw foods that I don’t wash and prepare myself, and can’t drink alcohol due to medications I’m on. Most of all, I miss sushi!
After one round of chemotherapy and one round of immunotherapy, 6 spinal punctures, and 5 bone marrow biopsies, I was MRD negative, which means minimum residual disease was below .01%. A matching donor was found and my stem cell transplant was in April 2019 after radiation. Radiation was probably the toughest part of treatment. When the cancer is specific, technicians can focus the X-ray on a certain part of the body for 20 seconds to a few minutes. I. My case because it’s blood cancer, they had me stand still behind a shield for 12 minutes on my front and 12 minutes on my back. I would strongly advise against big meals, because they will come back up. I threw up everywhere and watched these technicians clean all of their equipment. I felt terrible.
I was on a floor with a bunch of patients going through the exact same thing, so it was nice to see everyone from a distance walking laps and getting stronger post-transplant. I was able to leave the hospital in mid-April and seeing as I had to come back a few times a week for check ups it didn’t make sense to go home, I stayed in a hotel close to the hospital. My mom got into a clinical trial at City of Hope, so we had adjoining rooms. It was really nice to spend time with family outside of the hospital.
I returned home in June and went back to work in July 2019. In total, I was gone for 7 months, but it felt much longer than that. The company I worked for (and still do) was amazingly supportive and went far above and beyond to take care of me. All of my blood tests have been normal and my one year post-transplant biopsy showed 0 disease.