“I have spent the last few months looking with an open heart and un-limitless expansive mindedness to who I want to be NOW, honoring and working towards my vision for my future. I have learned that counting on any one else to create the life I want only makes me feel weak. Knowing it’s in my hands to create my life makes me feel strong, simple as that.” -India Arie
Nearly three years ago, I was told that my younger brother did not match my HLA protein markers. It is incredibly amazing how much has passed during that time. I’m almost finished with my mid-twenties and about to enter the latter half when twenty somethings like me will continue to build pivotal connections and foundations to enrich their adult lives. And yet, I still feel like I’m not on that bandwagon, at least not until I pass the finish line to this three-year struggle against leukemia with my stem cell/marrow transplant and move onto survivorship.
Since I started my clinical trial in mid-May with blinatumomab (the anti-cancer biological therapy utilizing monoclonal antibodies bi-specific T-cell engagers with a funny name), I immediately went into remission by the end of the 30-day cycle. This was such a surprise as my blasts were reduced from the 60-82% range in my body down to just 2% left. Some of my main side effects included tremors, headaches and fevers, but what’s most important was that I could tolerate the 24 hour non-stop infusion. After a brief 2-week hospitalization, MD Anderson discharged me with a portable chemotherapy pump and a fanny pack. I carry this bag with me everywhere I go — making sleep and showering a little trickier than usual. I now understand how Paco, my beloved dog, feels about being on his leash!
My only unpleasant experience with this protocol was the number of sticks in my veins. Since I have a PICC line running the therapy in one of my arms, according to hospital policy I cannot have my usual blood work drawn without getting stuck by needles. Imagine getting stuck multiple times a day for nearly two weeks in the hospital? My veins collapsed and I have battle wounds to prove it:
While I am grateful for the top-notch care that I’m receiving at MD Anderson, I couldn’t help but think in the back of my mind: “These guys are going to kill me before they even try to save me.” My major criticism of MD Anderson is that they are unable to look at complex situations by “stepping out of the box”. Policy is policy, but some rules need to be re-evaluated when a patient’s veins look like that. I pleaded with my leukemia oncologist to deliver an order to use my PICC line for daily routine lab draws only. Since then, my arms have been able to rest and heal over while my platelets recover.
I spent some brief time at home after going into remission. Home was rejuvenating. While it was nice to venture off into a new place for the summer (and upcoming fall), home is where the heart is. I had a chance to sink my feet into the sandy beaches of Southern California, attend my good high school friend’s wedding to the woman of his dreams, reunion with my friends, and hit up my favorite dessert spots in Berkeley and the Mission district of San Francisco. Although I’ve lived in California for most of my life, going back for “vacation” is like visiting an oasis with perfect weather. Oh how I miss you, California!
News also spread like wildfire when i was informed of the following not too long after remission: http://oaklandnorth.net/2012/07/18/leukemia-patient-finds-donor-after-two-year-search-fight-continues-to-help-cynthia-rodriguez/
Yes, it’s true! I have found my “perfect” match. A truly generous and kind individual out there somewhere who matches me 9/10 has openly agreed to be my donor. Can you imagine that? That day has finally come. My new second birthday is tentatively slated for August 28. My mother remarked that apparently in Chinese culture, it’s a very lucky day, because of all the 8s (which is a revered and lucky number).
Good news didn’t fall into my lap without some complications. Recently, I’ve been discharged from the hospital after experiencing some neurotoxicity while I am on the second cycle of the BiTES (shortened medical slang for my drug). Don’t laugh, but I started experiencing hallucinations and delusions in which paintings and pictures would move like in Harry Potter and somehow it ended with me landing in a bungalow through a parachute in India waiting for my best friend. It was a crazy dream, except I was awake and enacting the entire fantasy. My younger brother, who came to help take care of me for three weeks, and my Mom took me to the ER where they sedated me with some drugs and reversed my reactions. I ended up sleeping for 30 hours straight – a new record for me. When I woke up, doctors feared that I may have encephalitis/encephalopathy in my cerebral spinal fluid given my symptoms and that I also tested positive for the herpes simplex I virus (not the genital one — but the other in which mostly everyone has that is dormant in your body until there is an inflammatory response like the chicken pox or shingles) in my brain. That was quite a scare and setback, because I’ve always been extra protective of my brain. A friend of mine mentioned once that it’s an organ you invest so much in; for example, schooling and education.
Luckily, repeat analyses showed sent to Mayo Clinic showed that indeed I had a false positive. I breathed a sigh of relief and vowed to keep my brain leukemia free. I don’t know how, perhaps through prayer with God and lots of reading and acyclovir (antibiotics).
“There’s a 30-35% chance that you’ll have a 5-year survival rate with this transplant. And that’s me being optimistic. Realistically, I’d say about 20%.”
As I am enjoying home, these ominous words from my stem cell transplant doctor at MD Anderson continue to haunt me.
Well, screw that. I don’t want to hear about prognosis or another relapse anymore. I don’t want to hear about how much time I have left, because we never know what will happen!
Why set myself up for failure when there is still an opportunity to challenge it? I’ll just wake up everyday and if I’m still alive, I’ll thank my lucky stars I have another day ahead of me.