It’s been about a year and a half since I stopped writing. Sometimes, that’s actually a good thing. More living, less writing and mumbling. And perhaps I had wanted to write a memoir in case I fell into bankruptcy and needed to fund the rest of my medical expenses through a potential bestseller.
All kidding aside though, as I was getting ready to move forward with my life with complete remission, I tried to create a distance between myself and leukemia. Little did I know that once something like this happens, it never truly leaves you. Instead, it becomes a part of you.
Since I last wrote, I had been monitoring my progress with the damage done to one of our most vital organs – my heart. I’m proud to say that I’ve worked hard enough to get out of heart failure by normalizing my ejection fraction to normal parameters. Unfortunately, I also found out that there was a huge psychological learning curve to contend as well. Under the guise of an upbeat gal with her hair growing back slowly but surely into longer locks, I suffered quietly from a period of intense depression and post-traumatic stress. While I felt guilty for not being happy all the time as I transitioned to normal life, I sought help from psychologists and psychiatrists who told me that my mind was simply catching up to everything my body had physically gone through — a sort of extended version of the “fight or flight” syndrome. There would be moments when I’d go through a week just lying in bed, unable to “snap” out of it because I was caught in a dark tunnel of gloom. I couldn’t recover fully until I developed a journal of gratitude, sought help from therapists and psychiatrists for oncology patients, forced myself to exercise religiously as a way to increase endorphins naturally and developed a long-term survivorship plan. It also helped to realize that so many women, especially Asian American women have experienced some form of depression at one point in their lives and even celebrities recover from it too.
As most of you know, I discovered through routine blood tests that my counts were showing funky numbers once again beginning in October 2011. Gradually, I found out with a bone marrow biopsy test that I had relapsed by December 2011. This time, my acute lymphoblastic leukemia mutated into something more aggressive than ever. With only one week left to spare, I immediately jetted off to San Luis Obispo for a humble 24-hour getaway with my girl friends before I had to begin treatment again. I wanted to sink my feet in the sandy beaches of the central California coast for a bit before I had to spend six weeks in the hospital reacquainting myself with high dosage chemotherapy again.
During my hospital stay, I became increasingly desperate on the Helping Janet campaign I retired, but had to revive once again. I felt extremely guilty for asking help again and in those moments of desperation, I decided that I needed to be honest with how I felt and reach out to my community on Youtube. I just didn’t know that it would end up going on Reddit with over 360,000 views.
Our campaign started and this time, I solicited the assistance of some of my close friends and asked them to utilize their talents … for free. In between juggling graduate school and full time jobs, they diligently initiated drives and used all sorts of multimedia to get the message across. We all knew that I needed to find a perfect bone marrow/stem cell match to ultimately cure me from this illness. And though it’s not always a guarantee, it was certainly the only option we had left.
At first, my doctor was confident that I would enter remission after initial chemotherapy – which would end up as my 9th round of chemo. He pulled out the big agents, but to much of our surprise, I barely killed any of the leukemia and had around 80% left. Baloney, I thought. I had sacrificed the holidays, New Year’s, and my 25th birthday in the hospital (the second time spending it in the hospital) for very little in results! We decided to transition into the MOAD regimen, which is an acronym for a combination of different chemotherapy drugs I had been exposed to already in a different dosage format. This extended my search for a matching donor with five more months. I went through my 10th and 11th rounds of chemotherapy… bringing us to the present day.
Long story short, we accomplished a lot in terms of outreach. But still I find myself being screwed over and over again. The latest bone marrow biopsy results show that I still have 44% of leukemia left. While I’m glad that we killed more this time, I could read the sense of urgency on my doctor’s face. There’s not enough time. I need to either kill all of it soon, or else this illness will consume me, because I am no longer responding quickly enough to the chemotherapy.
I have every right to be angry, because I think I’ve been through my fair share of medical hardships. I’ve gone through the initial shock of leukemia, 11 rounds of high dosage chemotherapy and all its associated side effects, heart failure, a relapsed version of leukemia, a bone marrow donor search nightmare and now I face my latest: pursuing a clinical trial as a last resort to put me into remission… to even give me a CHANCE of being ready for a transplant when I find my match.
I don’t even know where to begin, because clinical trials are unfamiliar territory. Instead of relying on chemotherapy, we’d like to try a new drug that will bind with the T-cells in my immune system to kill most of my remaining leukemia. All of this sounds intriguing on paper, but in reality all I could think was — “Is this something out of a movie?” and “I’m going to be a guinea pig”. Based on a study in Germany with some patients in their first complete remission, it successfully killed the rest of their leukemia. Now they are currently having it tested on patients with relapsed acute lymphoblastic leukemia, particularly in young adults. I seem to be a good candidate for this trial, but will need to relocate to Los Angeles or Texas. One of them is an institution with the latest cutting-edge research while the other is a homecoming to an incredible support system.
I have no idea where to begin. Clinical trials are a huge gamble, but it’s looking bleaker than ever that I will find any other choice. Sometimes, I begin to doubt the intellect of my doctor and truly wonder if I am able to sort through a huge stack of research laid before me. Will anything I find result in something legitimate on Google? How do I translate these scientific names to comprehensible Chinese for my parents to understand? Will insurance allow me to seek the best treatment available to me, or am I restricted for second opinions from a few hospitals? Why does my doctor look so calm and composed while I am screaming inside?
Decisions are not only based on the best treatment available, but also other factors/determinants like finding lodging in the area while they conduct the trial and the impact it will have on my caregivers who will spend even more time away from employment.
It’s always one thing after another. Like the song that never ends. I’m so tired of this. I’ll try to come with a basic plan of action tonight. For now, I don’t have the answers to a problem I’ve been trying to solve for the past three years.