4 Dec 2009

Today, we didn’t lose.

Posted by Janet

Today, I got discharged early because I performed very well with General Methotrexate. Almost too well — I was expected to be discharged around Saturday, so that makes me about 48 hours ahead of schedule. This does mean that everything has been moved up two days, so I will be heading back in for the same 36-hours of non-stop infusion on December 10 probably, giving me approximately one week of rest for the body. (For those of you who are new to this blog, I give army-like pet names to my chemotherapy drugs, because I find it both amusing and … well — even if it’s all in the imagination, I think it’s fun to perceive and envision this struggle as an epic battle akin to the likes of the legendary Lord of the Rings or the beloved Harry Potter series.)

I’m filled with a lot of thoughts swimming around. This often happens when I’m excited and happy. Have you ever felt that way before? When you’re quietly happy on the outside, but inside everything is about to burst because you’re just so … full of joy? Full of momentum? Full of strength? Full of motivation and encouragement? Because you have the greatest support group in the world?

I dedicate tonight’s entry with the fact that for once, I didn’t feel like I was losing this battle. That there is, in fact, a winning chance against leukemia. And a very good one. Here are some random thoughts I’d like to share:

1. Thanksgiving week was probably one of the best I’ve ever experienced in my life (er, 22 years of being alive and kickin’). My blood counts went up enough that I could go to a dim sum restaurant and see my extended family in the morning. Then we celebrated at my family’s house with a fusion of Chinese delights and the American classic turkey. James visited and stayed for the whole week too, so I was super happy of course. My brother came home from Davis. Celebrated my Dad’s birthday. Had a chance to hang out with my old high school friends. Ate some delicious food in Danville, all thanks to Jelly. Finally went to the San Jose Tech Museum (by this time my white blood counts were at 3.0 and I did not contract a cold/flu from the kiddies running around, phew) with James and we did some “nerdy and geeky” things for an hour experimenting with different booths they set up. I know going to the museum and San Jose was a huge risk and another big no-no, but somehow it all turned out okay.

2. UCSF is the birthplace of the chemotherapy regimen for acute lymphoblastic leukemia (ALL). In fact, the national standards for how it is carried out was invented by Dr. Charles Linker, the former director of the UCSF Bone Marrow Transplant/Hematology Malignancies Program. He actually specialized in understanding my specific leukemia and they were very close to naming it the Linker regimen! Unfortunately, he has retired, but all the doctors follow his plans very carefully.

3. I am being treated as a pediatrics patient. Even my blood pressure cuffs are ordered from the children’s hospital, haha! I have small bones, I think, and thus, small arms in width. I read up closely on an academic paper following a cancer symposium meeting facilitated by Dr. Linker, and the argument is that by treating young adults as pediatrics patients, they somehow perform better with chemotherapy. My oncologist told me the same thing. The pediatrics regimen is very strict and even more difficult than the adult regimen — sometimes forcing you to skip holidays just to stay on schedule because timing is crucial to keep Mr. Luke at bay. The study is now examining the application of the pediatrics regimen to adult patients and seeing if there is a clear difference in outcomes and success rates with controlling Mr. Luke and potentially eliminating all of him.

4. As a result, I was really happy to learn that I did very well with the help of Colonel Vinchristine, Sergeant Asparginase, and Lt. General Methotrexate. Yes, I felt intense abdominal pain. Yes, I was really fatigued. Yes, sometimes I felt like throwing up. Yes, there were days when I was stuck in bed not wanting to budge or move at all. Yes, sometimes I was short of breath and felt like passing out when I walked up a set of stairs. Yes, I slept in fetal position trying to suppress the pain. But I knew these guys were doing their job. And lo and behold, my body was working with them, not against.

5. I had heard some rough things about Lt. General Methotrexate from former cancer patients. Every time I am introduced to a new soldier fighting for me, I get intensely fearful that my body will not recognize them as a friend and go haywire. It turns out that Lt. General Methotrexate is indeed a savage beast and here’s the amazing thing — once I had 36 hours of him transfused in me, Cadet Leucovorin (folinic acid) is immediately summoned as the antidote agent against Methotrexate to save my healthy cells from being damaged!! Isn’t that fascinating?! Cadet Leucovorin goes into my body like a vitamin and attempts to protect my body from further damage caused by the uncontrollable savage beast who does a great job like Wolverine from X-Men, but can sometimes get out of control and who knows… even temperamental ;-P

6. Sometimes I respond so well physically that the doctors have nothing to report, nothing to say. I learned that it was a good thing when they spoke less, stared at you, and just smiled. It’s also a good thing when you’re last on their list of priority patients to see.

7. There have been many occasions when my doctors would ask me, “So how were the sciences at UCLA? Did you major in molecular biology?” or “Were you pre-med at UCLA?” or “Are you interested in studying medicine?” or “You know more about hematology than I do!” (That was from the interns mostly) or “Hey, we heard you were studying to become a nurse practitioner?” Little do they know I knew I was not meant for medicine because of the following: I failed miserably in learning AP Calculus during high school and that I couldn’t do fetal pig or frog dissections in AP Biology. When exam time came, I purposely failed that section because it included a live picture of the anatomy and physiology of a pig. I couldn’t bring myself to look at a distorted animal. I think it really was a phobia. But, if I had the talent and endurance for medicine, I would have been a pediatrician.

8. Team Janet has accomplished a lot since we started in October. In just a few months time, we’ve collectively been able to register over 1,300 donors and continuing. Some numbers haven’t even been recorded yet. I cannot thank A3m, AADP, the Hawaii Bone Marrow Registry, friends, and family enough. I think this will continue in my entire lifetime, even when I’m cured. Imagine saving someone’s life. You saved a future teacher. Or a future makeup artist who can transform faces into visions of art in human beauty. Or a future engineer who wanted to work with NASA. Or a loving mother who wanted to spend more time with her children so that they grow up to be healthy and strong. Saving lives has a domino effect on what they’ll be able to do for other people in this world. So in saving one life, you’re also saving the contributions that they’ll be able to make in this world, the people they will inevitable affect … in summary,  you’re saving humanity? That’s pretty cool, I think.

9. Thank you Pahole. You are too kind.

10. Sometimes just sitting next to James on the couch and doing our own things like how he does random geeky searches on the internet for computer codes and I work on my teaching stuff is bliss. You know you’re meant for someone when the silence doesn’t kill … it’s a mutual understanding of best friends who just so happen to be enamored of one another.

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