I am struggling with writer’s block … the words are not coming out quite the way I want them to and it’s like squeezing toothpaste out of an empty toothpaste tube! To let the creativity flow easily, I decided to answer some questions I get asked a lot and integrate them in these entries. This is part one in a series … or whenever this “writer’s block” ends!

Q: How did you spend your Christmas?

After recovering from a variant of the cold virus in about 36-48 hours (which feels like a record time for having no defense white blood cells), I actually got re-admitted to emergency care for the onset of a sudden, moderately severe headache on Christmas Day. It’s the kind of headache you feel when someone pushes your head violently against a blank, white wall – you get a dizzying effect as well as a sharp sensation afterwards that never quite goes away. I called my doctor to actually get permission to take a small dose of Tylenol (less than 500 mg) to ward off the pain temporarily, but since I also had low platelets and fell neutropenic they suggested that it would be safer if I get evaluated and cleared for potential internal bleeding in the brain right away.

I WAS SCARED. There are many vital organs in our bodies, but damn, I thought — not my brain. And on Christmas Day? Shucks. As one of my dear friends said to me with utmost honesty, “You have been dealt an extraordinarily [bad] hand”. However, I would like to think that there is some balance in the universe, and quite luckily, I passed all the exhaustive tests with flying colors. Results came negative. I was ready to go by the end of the 4th hour. For courage and to pass the time, I read a “cliff-notes” version of Nelson Mandela’s biography on Wikipedia.

Q: When do you start chemotherapy again? How many rounds left?

Pretty soon actually. I’m a little delayed on my schedule, because my body took quite the hit from the small cold and it’s struggling to produce the next set of white blood defensive troops! My predictions land somewhere near the first to second week of January. I will begin Round 4 by this time, and consequently I will have 3 left.

Q: What’s it like exposing yourself to the public about having a life-threatening disease? Shouldn’t it be something kept privately?

Leukemia is a very unique type of blood cancer … in the sense that it involves a community of supporters to proactively help save a patient from the illness by searching for a matching, registered donor. I come from a Chinese-American family and we’re traditionally very private about these matters. Then again, who isn’t? How many people will you go up to and say, “Hi, I’m so and so, and I have leukemia.” It kind of leaves a bad taste in your mouth. Before all of this began, it took me a while to convince my parents (while I was hospitalized) that this type of search for a non-related donor requires public exposure, no matter how much we treasured and valued privacy.

Q: Do we gain a full understanding of your situation through your blog? All the ups and downs?

I would say not entirely, because I only reveal 5% of myself to the public. I save the other 95% for my family and friends who do know me. I still hold steadfast to the tenets of privacy and protect them aggressively.

It’s been such a long time since I’ve kept a journal. I used to maintain a public blog throughout high school joining the ranks of my friends as we disclosed and poured our thoughts, dreams, and aspirations into these websites, following the xanga trend back in the heyday when its popularity was comparable to today’s social networks like mySpace and Facebook. After reading a friend’s blog, however, I was inspired to write again, but this time for all the right reasons and with outstanding purpose.

Maintaining a public blog breaks the sacred curtain of privacy. There were times when I’d read a couple and think, “Why would you make all of this known to the public eye? Isn’t that desecrating?” One of my favorite explanations for the importance of maintaining your privacy comes from Czech writer Milan Kundera’s Testaments Betrayed:

“…that we act different in private than in public is everyone’s most conspicuous experience, it is the very ground of the individual; curiously, this obvious fact remains unconscious, unacknowledged, forever obscured by lyrical dreams of the transparent glass house, it is rarely understood to be the value one must defend beyond all others…Private and public are two essentially different worlds and that respect for that difference is the indispensable condition, the sine qua non, for a man to live free; that the curtain separating these two worlds is not to be tampered with…”

I created this blog as a personal outlet, but one in which it is safe enough to share certain experiences and perspectives to the public eye. It is a miniscule snapshot into my life, more of a collage or scrapbook really than anything else. Nothing is in chronological order. It’s not a reflection on what I did each day. It’s really more of a quick glimpse into certain, extraordinary moments in time that I’d like to remember.

As for the name, “Autumn in January,” it’s a combination of one of my favorite seasons of the year along with my birth month.  My mother named me “Janet” after the month of January and it has stuck with me ever since.

To truly understand the situation, you’d honestly have to step in my shoes and be diagnosed with acute leukemia. That’s the only way you’d get the full, complete picture. And I don’t want to necessarily lend these shoes out on a whim, even for a brisk walk that you’d like to take in them, because it’s a painful journey.

Q: Will this affect your employment prospects?

There’s a pretty good chance I will have a hard time finding a job if I gain full recovery, and not because I’m incapable of working. Future employers may have heard about this grassroots movement; it’s a little aggravating to find your name easily searched through Google and synonymously linked to leukemia. I may be discriminated informally by a health pre-condition, no matter what innate talent and skills I can offer to the table. But that’s a sacrifice I’m willing to take if it means this particular story can get more registered donors for other patients. I’m assured though by the fact that the adversity of finding a teaching job in this economy won’t be nearly as difficult as fighting against a blood cancer. You can call it stubborn, you can call it just plain stupid or heroic … I just feel as if it’s the right thing to do. Sometimes, it sucks to have your life guided by an unwavering moral compass

Q: What do you want to tell people that they didn’t know already?

I enjoy doing decent work without being recognized for it in any fashion or form. I don’t need accolades or awards to echo in my ear. If they can increase the legitimacy and credibility of a cause or the work that I do, then all right. If I have to show future employers what I am capable of accomplishing, then okay, that’s probably something I need to earn in due time. But singing praises wasn’t something I was raised to chase after for the pure purposes of stroking my ego; I usually like to do a lot of behind-the-scenes work and not get any acknowledgement from it because I don’t prefer the limelight. From a young age, my parents taught me humility and modesty to keep rising egos in check. I was more acclimated with receiving constructive criticism than anything else. And holding a nice second place in any type of competition I entered whether it was piano, choral, speech, business … the whole slew of high school trophies that have slowly collected dust. I liked hiding under second place and NOT getting the winning position. It felt comfortable, quite honestly. Perhaps this is why I can be very self-deprecating if you get to know me; friends use to ask why I would make fun of myself so much, and it’s really a way for me to feel grounded and not something rooted out of low self-confidence.

I tend to quote Nelson Mandela a lot, but what I need to say in the end can easily be summarized from one of the most well-respected leaders of our time:

“It is better to lead from behind and to put others in front, especially when you celebrate victory when nice things occur. You take the front line when there is danger. Then people will appreciate your leadership.”

I was discharged a few days ago. Then I was back just yesterday night in the ER for about 9 hours, because I contracted a variation of the cold virus; I voluntary checked myself in. Need to take precautionary measures. I’ve been cleared for all major flus.

But I have a fluctuating fever now. The only energy I have right now … well I will use it to express this:

Mr. “Variant of the Cold Virus” and Mr. Luke/Leuk, I know you have undoubtedly conspired to bring me down. Just because I’m immunosuppressed, it doesn’t mean I will let you little punks take over and ruin me. I banish you two!! Rawr. THIS IS WAR.

If Nelson Mandela could survive 27 years of prison for the sake of South Africa, I can sure as heck survive leukemia for my friends and family. This is a self-fulfilling prophecy. Watch out, Mr. Luke/Leuk, because no MATTER WHAT YOU DO, I WILL WIN IN THE END. I have no choice but to believe that.

And stay out of my liver.

Dear Lt. General Methotrexate and Sergeant 6-Mercaptapurine “G-unit 6 MP,”

I’m in an absurd amount of pain. You guys are just like Wolverine from X-Men — you usually have good intentions, but when you go off into a berserker rage killing spree, you have no mercy! While I am honestly thankful that you’re doing this round of blasts against leukemia, I finally understand why my doctors said that our soldiers needed to retreat for two weeks in order for my body to EVEN begin to FATHOM what you’ve done and begin to recover/catch up.

6-MP, you need to stop bringing my blood counts and platelets down on purpose. You must control your temper and the side effect, because I don’t want to be living on borrowed blood every week, and I don’t particularly like it when random big bruises show up on my body out of nowhere. Although most patients can’t handle you. I can ONLY MAYBE endure you for 3-4 weeks at a time before I want to question your loyalties to the brigade. So now we’re going to pull you out for a rest temporarily, because my body can’t handle it anymore and needs to catch a breather.

As for you, General Methotrexate … same deal. We did just fine last time. Now you’re plunging around killing everything you see in sight. Please – my liver, kidneys, and gallbladder are innocent bystanders/civilians. They never wanted this war in the first place so if you see them just standing around chilling in despair and muteness, it’s because they’re afraid that you’re going to think they’re on the wrong side of the battle. You need to try to kill leukemic cells without damaging my healthy ones with equal force. Don’t you dare take out your anger on my liver! Unfortunately, due to your temperamental nature (no offense) I woke up finding myself in a wheelchair on my way for another one of those CT/PET scans at 3:00 am in the morning, followed by an ultrasound of the stomach by 7 am. I couldn’t breathe without feeling like my rib cage was about to explode. What was that about?!

I know you two are crazy. I know you two are probably the most crucial soldiers to the army on the physical front. But enough killing with innocent civilians, a.k.a. my organs and tissues. Don’t let Mr. Luke (leukemia) think he’s smarter than us, because he’s not.

Sincerely,

Janet
Head General of the Army

Excuse the streak of not-so-happy-go-lucky-sunshine posts. Tomorrow, I will write something happy, but for now this takes precedence over anything else: (a re-post from Stacie’s blog: www.helpingtami.org)

I am whining about having leukemia at age 22. Well, here’s a little boy who is only 7-years old.

Stacie’s words:

Zyreal

“I’m begging here. If you are of African descent (No matter what continent you live on) and if you are not in a National Marrow Donor Program PLEASE consider joining to help save Zyreal. Also please forward this message to anyone you know who might be able to help him.

Zyreal is an adopted 7 year old boy who suffers from Sickle Cell Anemia. He recently underwent a cord blood (stem cell) transplant to save his life but today his family found out the transplant failed. This means he is now left with no working bone marrow. His body cannot produce new blood cells or platelets so for the time being he will have to rely on transfusions to buy him more time. A better match must be found ASAP if Zyreal is going to survive.

Ethnicity is crucial. Any patient in need of a marrow transplant will most likely find a match within their own ethnic group so Zyreal needs more people of African descent to join the marrow donor program in case they are the one who is going to be able to save his life.

___________________________________________________________

IN THE UNITED STATES

If you live in the United States please go to Be the Match and enter your zip code to locate a live drive in your area:

http://www.marrow.org/JOIN/Join_in_Person/index.html

It takes 4 cotton swabs that you wipe on the inside of your cheeks to find out if you are the match that can help Zyreal. It can then take up to 10 weeks for the test to be processed. Zyreal cannot wait so please do not delay in locating a drive.

___________________________________________________________

ALL OTHER COUNTRIES

There is also a list of international marrow programs at this link:

http://helpingtami.org/asian_stem_cell_transplant_int_marrow_programs.html

Please contact a program near you to locate a live drive. In most countries testing is simply swiping the inside of your cheeks with 4 cotton swabs. It can then take up to 10 weeks for the test to be processed. Zyreal cannot wait so please do not delay in locating a drive.”

Before you stop reading though, I write today’s entry not as a means of igniting feelings of sadness.

Had it not been for some research I was doing regarding the Asian Pacific American community, I would have never came across a news article back in September that highlighted the brutal murder of Annie Le, a 24-year old Vietnamese pharmacology student at Yale. I guess I didn’t see this in the news back then, because I was completely shut down from the induction phase of chemotherapy at the hospital. Her body was finally found on what was supposed to be the day of her wedding to her fiance and best friend. She was beautiful — I’m talking beauty, brains, and an equally beautiful spirit/dynamic personality to match. I’m sure if you’re even remotely interested in this person and her contributions, a simple google search will do. What connects me to her the most was the fact that she was in the middle of conducting scientific research to cure particular cancers and other diseases. She had a great interest in pathology as well during her high school days. I cannot explain why this happened to her except one individual unwisely chose to take out his anger through violence. This is why we need to stop fighting and just chill out sometimes. I mean this on a grander scale as well – wars being fought that seem unnecessary to a majority of the population.

Another remarkable individual that many of you may already know is Michelle Maykin who founded www.projectmichelle.com. She was a beautiful woman who started this whole general movement on alerting the Asian Pacific American community with the alarming deficit of ethnic minority donors in our national marrow registry. I first found out about her during my diagnosis in July and I am not going to hide this — as I read to follow up on her story and pending memorial service, I completely shattered and bawled in my apartment while my roommate was still asleep in the early morning. I continued to break down in front of my friends during a joyous car ride to Barnes and Noble. This was one of the very few times in my life where I’ve cried for a complete stranger I didn’t even know. I’m sure some of it was seeing how my own fate could possibly unfold the same way in a merciless manner, but most of it was a mixture of confusion, anger, and trying to process this deficit in numbers. And trying to process her existence and presence in our communities. Looking back in retrospect, I wonder if our paths were meant to be crossed in some fashion. In some uncanny similarities, she also had a nickname for leukemia – Leuk … and I figured out my diagnosis by the following month – August. It was almost as if a torch was being passed from one individual to another. (As a side tangent/funny thought – sorry if any of you are actually named Luke in real life. I sincerely am NOT targeting you in any way, I just thought it was more of a recognizable form of identifying leukemia.)

I know crying may be perceived to be a sign of human weakness. For me, I just do it because I don’t get physical and punch walls or break glasses. My coping mechanism is unfortunately though shedding many tears that I have a difficult time holding back.

Tonight, though as I naturally do the same and find myself shedding a few tears for both of these women, I find myself with a strengthened resolve to do as much good in this world as possible to balance out the crazy, unexplained chaos that pervades our communities. As idealists, we often lose faith sometimes because there seems to be so much working against us and there are moments when we think our causes are ultimately meaningless and futile in the end. After all, who wants to keep struggling everyday if we can’t see results? But after hearing about the unfair deaths of these two human beings, I realized that in the end they were doing what they loved or seeing the people they loved during their last hour on Earth. That reassures me. My religious faith kicks in now and I believe that they’re in a wonderful heaven of their own … free from the pain and suffering of our earthly world that we continuously work hard to minimize as much as possible. I would like to think that they’re both enjoying some kind of kick-ass delicious pan-Asian buffet or something along those lines up there having the most joyous time of their lives where everyday is almost like a special visit to Disneyland.

Today, I pay tribute to them. I will temporarily think of this no longer though at this time, as I know bathing oneself in a pool of sadness is not a key to lasting recovery. I ask you not to be overly sad either. But I wanted to at least acknowledge what happened … what transpired. We cannot turn a blind eye. And I wanted you to know that the fight still continues and we must not stop momentum. I’m not saying this selfishly to secure myself a match so I can live longer in the future. I’m saying this because damn, it just feels like the right thing to do.

To Annie Le and Michelle Maykin. Two women we could learn a lot from. And so, we march forth. No pity party here, we don’t need any of that. Just actions to back up our willingness to create change … for them at the very least.

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.