I was first diagnosed with acute lymphoblastic leukemia (ALL) at age 25 and since then I've had two bone marrow transplants and CAR-T. For the past 8 years I have been on and off "healthy" and undergoing or actively recovering from treatment. I talked about some of the things I did during those treatments to help my motivation and morale, but there is a lot about the treatments themselves that were unique to someone like me, a mixed race, young adult with blood cancer. Both of my bone marrow transplants were 50% stem cell transplants from my sibling, and then after that relapsed, my cousin. During the second transplant, I achieved remission by multiple rounds of intense chemotherapy and, during that time, forming the plan to put me in a clinical trial with CAR-T. This all took place at City of Hope.
The CAR-T treatment was unlike any of the chemotherapy or radiation that I had done previously. They took a blood draw and then a month or so later it came back as a small, goopy, IV bag. I remember the taste as it was pushed through the port. Very earthy and floral but more vegetal, like grass or garlic. I have tasting notes for any future vintages. It took 30 minutes for the drug to be administered, and during that time I have never seen so many doctors in my room at once. Most were there, I assume, just to watch a CAR-T treatment. I'm not sure if it was my age or the procedure in general but it seemed like more of an event than a routine bone marrow transplant.
For the first few days, I remember nothing special. I was monitored in my hospital room and asked to say and write: "sweet as apple pie" as well as my name, date, and broad knowledge questions. It was sweet as apple pie for about 48 hours until it became swweeeeee sssssss spppppplleeee ppppp and then I woke up three days later. This was just my experience and for everyone it's different, but I ended up having some neurotoxicity that completely wiped my memory from those three days. I was conscious and there are videos of me but I was incoherent and overall, not myself. When I woke up, everyone looked at me as if it were 40 years into the future, and I held the clues to saving the human race.
"Paul, can you hear me?"
"mmmmmhhhrrrr"
It was another month, I think, until I was discharged. The neurotoxicity was a little scary but more so for those around me. From my perspective, it was sweet as apple pie, and then I woke up with a watcher and traumatized faces and tubes that weren't there when I went to sleep. Too much information? You asked for it.
When I left the hospital, I stayed at a satellite hotel on campus where I had access to labs and care. I would need it too because the neurotoxicity would flare up at times, leaving me with impaired speech and motor function. Eventually, I was able to go home and felt so much stronger than recovering from any chemo or bone marrow transplant. The plan was to still go to transplant with my 50% stem cell match, but in the meantime, I went to San Diego with my wife, and on another road trip to northern California. I was immunocompromised but with the right supervision and precautions, I felt very encouraged by how robust I was coming out of the apple pie treatment.
Bone marrow transplant was a success—another month in the hospital, preempted by radiation treatment. Bone marrow transplants are my least favorite of the treatments. As those of you who have been through or witnessed, it turns your body inside out and most days you are just concentrating hour by hour, at least for me.
Now it's been a year and with my almost decade of cancer experience, I was given an opportunity I never considered I could contribute to. I started working with LLS and getting involved with this community and sharing my experiences and connecting with others at events like Light The Night (LTN). I didn't know what to expect from cancer events, but before LLS, I felt that the less cancer the better. That included talking about or sharing in trauma with others. I took my time and made it out, but I'll never be able to order an apple pie at a restaurant, so why should I voluntarily go back to those experiences?
Well, couldn't be more wrong. Working with LLS and meeting so many incredible survivors and caregivers has been one of the most healing and rewarding parts of this last recovery. I even became close to my own friends and family as they all got involved in Light The Night and donation drives. My experience with multiple relapses and CAR-T have put me in a unique percentile of cancer patients. Not to mention being half Japanese and a young adult. There are not many patients out there that reflect my experience but I also saw that each of us are our own patented, genetic catastrophe. It helps to know that even if your disease, treatment, recovery, age, social upheaval, identity molting and general, chronic, lifestyle collapse feels singular, there are others who can commiserate and celebrate in the same way.
It's been a crazy decade, but with the support of my family, my wife, and my many communities, I've been able to take on this hardship in my life and turn it into my greatest success.
Paul
acute lymphoblastic leukemia (ALL)
