Thank you to everyone for your kind wishes and thoughts throughout my entire ordeal with Mr. Leuk/Luke. It’s been a while since I have blogged! Here are some pertinent updates -

It continues to baffle me that I have completed 8 rounds of high-dosage chemotherapy as of late June! My health care team and wonderful friends have celebrated with me during the most crucial and joyous moments. My body is recovering diligently, but slowly. My immune system is still quite fragile.

I am now transitioning from consolidation treatment into maintenance therapy by essentially taking oral chemotherapy pills (methotrexate and 6 mercaptopurine). This will last 18 to 24 months roughly as an important preventative measure to ensure that I will never relapse again. Luckily, my health care team will be watching and monitoring my dosages carefully so that I can maintain an excellent quality of life.

Speaking of life … I will be resuming my plans to become a licensed teacher. I am on my way to pursuing a dual Master’s degree in Education with teaching credentials in one full sweep!

At the same time, the tone of this blog will change in the upcoming weeks and months ahead. I’d like to continue writing for other patients in need by introducing their stories to the public. I’ll be sharing information about tips and suggestions I have learned along the way to maximize patient advocacy and care. I am looking forward to working behind-the-scenes with the Asian American Donor Program (www.aadp.org), Asians for Miracle Marrow Matches (www.asianmarrow.org), and the Cammy Lee Leukemia Foundation (www.cllf.org) to encourage as many university students and other young adults to join the National Marrow Donor Program registry.

I am extremely proud to say that Team Janet has collectively recruited 4,537 new donors to the registry. Only 10, 463 more people to go! While it may take several years to reach 15,000 donors, it’s a goal that still remains of utmost importance to me.

Even though I’ve gone through a harrowing experience that has changed my life completely, I’d like to think that I’ve emerged from it with a new perspective. You have a whole new appreciation for everyone and everything when you’ve nearly had it all taken away from you. Thanks for indulging me; I am ready to crumple up my sleeves and advocate!

Dear everyone with Team Janet,

Janet is currently in a similar situation to former UCLA basketball coach John Wooden, receiving critical health care and undergoing intensive treatment. This is her reality now. She will be going on a hiatus from writing as she receives medical attention from specialists on a host of issues that have occurred because of her treatment for acute lymphoblastic leukemia. Side effects of her chemotherapy treatments mean her liver is “very angry right now” and she doesn’t know about the condition of her kidneys. ALT and AST levels are extremely high. Her LD levels are very high too. She is currently coping with peripheral neuropathy and is limping on one leg. She is also coping with a lot of anxiety and is finding it very difficult to sleep and gain rest. These side effects, and others, are the real battle scars that chemotherapy leaves. On the outside she may appear to be a very
young 23-year old woman, but on the inside she has gained the maturity and insight of someone closer to 45 or 50 years old. Janet uses everything she knows intellectually and what she’s learned in life lessons to communicate with her health care team.

For the moment, the “Commander-in-Chief”/Head General of Team Janet has elected to wage furious, albeit private, warfare. She asks that you please keep her in your prayers, and protect her as big brothers and sisters. Know that she is doing everything she can to gain and keep control of the situation and is frequently strategizing with her health care team and specialists to protect her health and save her life. She has asked us to write and communicate this to you under her alias for the blog.

Sincerely with much gratitude,
Team Janet

I’m going to preface this entry with the fact that I don’t know anything, I still have a lot to learn in life, and this is all just my personality.

I find it most fascinating (with a lot of empathy and an attempt at understanding) when I learn about patients who attempt to keep a brave face through it all while they’re trying to deal with a set of different cards life has given them. Here’s a list of 14 topics running through my thoughts at this current moment in time on Monday morning, Memorial Day 2010:

1) incurable cancers

2) different economic backgrounds – from the rich to the poor, lower middle class, upper middle class, even prisoners (yes, I have seen prisoners at the hospital and a couple have been just a few doors down from my room)

3) lack of access to healthcare, access to healthcare

4) when to push and grovel a.k.a. fight for the things you need and then when to silence that voice because it’s actually better to stay quiet

5) English as a Second Language

6) difficulty of categorizing young patients from 18-24 years of age – are they pediatrics, are they adults?

7) cultural differences, religious beliefs, spirituality

8 ) alternative medicine, integrative medicine, traditional Western medicine, how other hospitals practice internationally

9) the attraction of hospital business to outlier case studies

10) how to address the immunity of doctors from being jaded and how they “metabolize emotions” in the profession

11) there are days I want to just sit at the clinics and ask my physicians if I could just follow them around, observing the doctor-patient relationship from a third-party perspective

12) there are days when I want to conduct candid interviews with my health care team to understand how their roles impact their lives and how they must emotionally cope with the loss – how some do I better than others by distancing, how some quietly vent in a special room over patients regarding frustration, sadness, anger, annoyances, etc.

13) figuring out the hospital system and how it works – my findings are… kindness, respect for one another, honest answers, and friendly assertiveness.

14) here’s the kicker of them all: dealing with leukemia in a developing nation with lack of basic health care needs.

As you can probably tell, I am a bit crazy and nerdy, but when “trained” under the social sciences … it’s the first instinctive thing I do. I ask why and would love to do some “studies” on this. I have a feeling my physicians and nurses who are reading this now will laugh a little at my ridiculous behavior

I promise a more detailed medical update soon! The latest blood draws revealed that I am currently dangerously neutropenic once again – I essentially have nearly no neutrophils in my body, so my immune system is highly vulnerable to potential infections, simple colds, pneumonia, et cetera. Don’t worry though, this means that Round 7′s chemotherapy soldiers (aspariginase, vinchristine, doxorubicin) have been working excellently and I have been anticipating this huge drop in my blood counts overall since we started the cycle on April 30. I am responding to Delayed Intensification for now and even though I feel like utter crap most of the time (sorry for the bad language!), there’s only 13 more days left of this round! We will proceed to Round 8, the last and final high dosage chemotherapy, by June hopefully!

Cancer is pretty stupid, I'll have to admit!

For now, please enjoy the following review of a scholarly article in the Oncology Nurse Edition. It provides a pretty well-summarized glimpse into my experience as a young adult fighting a blood cancer. I hope this speaks for all young adults going through the same trials and tribulations!

(Credit: www.planetcancer.org)

ONCOLOGY Nurse Edition.
Vol. 23No. 11
The Odo/Potter Article Reviewed
By Heidi Schultz Adams
Founder / Executive Director, Planet Cancer
Advocacy Co-chair,
LIVESTRONG Young Adult Alliance
Austin, Texas | October 9, 2009

This is a review of an article appearing in ONCOLOGY Nurse Edition.

There has been a growing recognition in recent years that young adults with cancer are a distinct demographic group with unique needs, issues, and challenges related to their age and developmental stage of life. Cancer at this time of life is unexpected, and young adults are generally unprepared to manage the experience of a life-threatening illness. As the authors point out, it may take all of their attention and capacity to master this steep learning curve and get through treatment. Then, upon entering the post-treatment phase, the enormity of what they have endured can suddenly hit home, and must be acknowledged and dealt with as they try to reorient and reintegrate themselves into the world of work, school, friends, and family. Indeed, for a young adult, the impact of cancer does not stop and may even become more overwhelming following the end of treatment.

Odo and Potter do an excellent job of cataloguing the many ways that cancer survival impacts a young adult’s life, organizing them into three primary categories: physiological, emotional, and practical. The multiple issues in each area are outlined, with the most significant ones explored in more depth and brought to life through poignant personal statements and descriptions given by young adult survivors.

In discussing the physiological impact of young adult cancer survivorship—including fatigue, scarring, cognitive changes, loss of fertility, and sudden onset menopause, among others—the authors summarize the many potential concerns of this group with the phrase, “loss of healthy self.” Indeed, the challenge of addressing the needs of young adult cancer survivors could be framed as a search to help them redefine and regain the “healthy self” in all three primary areas—physiological, emotional, and practical—through the successful integration of their cancer experience into their post-treatment lives.

The authors also relate the emotional impact of surviving cancer to the disruption of natural developmental tasks of the young adult, such as establishing independence or solidifying a not-quite-stable identity. The loss of innocence and control, along with the specter of uncertainty and existential questioning, may lead to a heightened sense of vulnerability and isolation from family and friends who do not understand the survivor’s altered worldview.

In terms of practical concerns, in addition to relatively straightforward challenges such as education, career, finances, legal rights, and insurance, Odo and Potter point out how the interruption of normal development gives rise to more complex challenges for the young adult survivor, such as public vs private disclosure and goal-setting.

This article is commendable in its detailing of the many ways that a cancer diagnosis can impact the life of a young adult survivor. However, the number and breadth of issues included only magnifies the lack of programs and resources offered by healthcare professionals to help the young adult cancer survivor. In fact, young adult survivors themselves have been the primary initiators of programs and services for their age group, including online and face-to-face peer support communities; scholarship programs; camps; retreats; and other organizations addressing specific diseases, issues, or lifestyle challenges.

The authors end on a hopeful note, pointing out that despite the many challenges, young adult survivorship also presents opportunities for growth and hope. In order for this hope to be fulfilled, the current knowledge base must inform the development of appropriate interventions and additional resources that will help young adult cancer survivors to integrate their cancer experience into their lives and regain that ever-elusive “healthy self.”

Hey all, in case you missed it, we added a banner for Janet regarding UCLA’s health week. Check it out at
http://www.janetgliang.com/2010/04/29/hearing-from-my-fellow-bruins/

If you are in the LA area and would like to help out during the event (they still need lots of help!) please contact Gloria Chi of A3M at

I just received an official letter of support from UCLA Vice Chancellor Janina Montero (see below, click to enlarge). This will be circling to all the UCLA student groups on campus as official acknowledgement and support from the university in preparation for Team Janet UCLA Mega Drive on May 5th-7th at Bruin Plaza from 10:00 am to 2:00 pm during Bruin Health Week.

I’ve done nothing really except e-mail from behind a computer. There are a lot of unspoken heros in this journey between family, friends, and strangers alike. But when honestly wonderful things come out of a situation like this, I can’t really ignore the potentially good and well-intentioned P.R. it can do for other cancer patients. While the whole issue is centered around the fight against Mr. Luke/Leuk, the whole matter is now about CANCER.

“In the next few years, cancer will surpass heart disease as the number one cause of death in the United States. Every year, more than 1.2 million Americans will be diagnosed with cancer, joining the 8 million who are presently living with this disease. Statistically, cancer is as common as acne and as ubiquitous as a male-pattern baldness.”

– Comprehensive Cancer Care: Integrating Alternative, Complementary, and Conventional Therapies. By: James S. Gordon, M.D. and Sharon Curtin

Enjoy the letter and please forward it to any friends and family you know. There’s something I want to make clear though: I desire no fame, no “celebrity status”, nothing. I had to sit down and figure out what is happening to me because I’ve assumed a face behind this for the university demographic, besides minority Americans. As soon as I heal over, I will be quick to change all my warfare uniform (a.k.a. hospital clothing) back into civilian attire, if you know what I mean. I wanted to assure you of the intentions behind all this, I guess, because it’s all suppose to be good … perhaps you can take it as my personal “revenge” against cancer.

I’m going to begin Round 7 out of 8 chemotherapy in less than a day with delayed intensification beginning with chemotherapy soldiers dexamethasone, vinchristine, and aspariginase …  but with a lot of motivation and reciprocal inspiration from everyone who cares. Thanks so much.

This piece was written by a dear friend – Brianna Lee. I met her while we both worked at a non-profit independent publisher for children’s multicultural literature in San Francisco. Enjoy!

“I like to think, sometimes, that I come from a fairly unique background. I’m part of a 5% ethnic minority population here in the States, a 2.5 generation girl with an American-born Chinese father and a Hong Kong immigrant mother, bred into weekends at Jade Villa dim sum and shit-talking Cantonese aunties. I spent seven out of my first 11 years sweetly indoctrinated by evangelical Christians, in classrooms mixed with both pastors-in-training and quasi-Chinatown gangsters.

A one-of-a-kind story in some circles; in California and here in New York, it would probably elicit a shrug at best. What’s more extraordinary about my circumstances, though (I think at least) is the particular culture of the people that have come to surround me in this little life I lead.

You can say you’re born into a family through no conscious will of your own. You can say the friends you call your best just came to you by chance. This is probably the case with me, too. Like a sort of gravitational field pulling in dust and debris, gradually settling together into asteroids and moons in a calm and steady orbit, I guess people have settled into my life this way too. But what’s common among most of them, something that has inevitably pervaded my worldview and life decisions, is this urge to help, well, the world.

Okay, everybody wants to help the world, kind of.  Everybody wants to reduce carbon emissions, eat less meat, give aid to starving kids in Africa — that’s all fine. But the people I grew up with, they’ve adopted the principle of helping others full-on. It’s more than reading about a natural disaster and donating $50 before returning to your coffee (not that there is anything wrong with that — provided the organization you’re donating to is legit and doesn’t have massive overheads). It’s a life dedication – for some, in occupation; for others, in just plain everyday life. I’ve probably never really told any of them how proud I am of them — my father, who was a civil rights lawyer for thirteen years and uses his social justice principles in all the work he does now running a city government; my mother, always bringing in kids from China to have a chance to study in the U.S. and personally taking care of all the visa requirements; my social worker roommate who squares off with troubled kids on a daily basis; my sister, a former student organizer and feminist/queer rights advocate who once told me her one goal was simply to “help women”; my boyfriend who has a searing distaste for white collar crime and is working his ass off through law school to make sure companies stay in line; all the students in my graduate program who have worked with child soldiers, given up two years of their lives for the Peace Corps, volunteered for refugee assistance, and campaigned for changes in development policy; my group of friends back home who are all focused on benefiting society in some way through medicine, biology, law, policy, and technology. It’s really not so much the profession or the action – anybody can have a job or do something and say that it helps society in some way or another – but it’s the attitude taken, and the way that responsibility is weighted against other things.

Four years ago, when I was alone in Burma, a monk I had met at a famous pagoda in the then-capital city turned and asked me, “When you graduate from school, what are you going to do to help people?” And he proceeded to tell me stories about monks who had gone into the woods in order to teach children, risking and often suffering from malaria in the process.

I don’t remember what I answered, or if I even had an answer.  I’m still not entirely sure. I care about a lot of things – rising inequality and unemployment, free speech, journalist protection, violence against women, education, warfare, international development. I’ve studied all these things. But what am I going to do? is the $16,000 question. And I can’t tell you how many times my dad has hammered this question into me growing up — In what way is this privileged existence I’ve afforded going to somehow dedicate itself to helping someone else?

Still figuring it out.  But with a social circle like this, there probably is no better environment to figure it out in.”

Life is too much of a beautiful mess for me to let go of the practical optimist within … even the sad parts are not so bad when you become real and honest with the whole thing. Reality seems to be the best teacher these days. Humor and laughter have a strange way of abating intensely distressing situations – while it can be acknowledged as a coping mechanism, I think it’s one of the best ways to find a sense of release.

Medical Update:

The most recent lab values –

White Blood Cell Count: 3.2 (normal range – 3.4-10)

Red Blood Cell Count: 3.69 (normal range – 4.0-5.2)

Hemoglobin: 11.2 (normal range – 12-15.6)

Platelets: 66 (<— dropped significantly from 138 in a matter of DAYS. What is going on here?)

My doctors are on high alert because while everything looks like it’s recovering nicely from six rounds of chemotherapy, my platelets are dropping significantly. They are the most highly sensitive in terms of cells in our bloodstream with the shortest lifespan. If they don’t rise to at least a 100 soon, a bone marrow biopsy will be conducted to investigate the matter closely, because there’s only so much that can be revealed medically from blood draws. I’m somewhat behind a few days on starting chemotherapy Round 7 out of 8. Since there is such a strict and aggressive protocol to follow, we want to act fast and be able to catch things early on should leukemia change its course.

Let’s face it – I am really tired of worrying. The paradoxical nature in all this is that while I strive for perfection in the healing process, I actually have to surrender myself into realizing that it’s okay when there is ambiguity and uncertainty. This probably sounds like an easy task, but for me – it’s unbelievably difficult. It’s a certain type of mindfulness that I’m only beginning to understand and practice on a cognitive level.

My nurses and friends have been wonderful. When things seem to go wrong or I seem to drift off into a sea of self-doubt, they rein me back into normality. They seem to accept me for who I am, regardless of the overwhelming number of flaws I possess. They embrace the crazy me within! And I’m equally gravitated to how crazy they seem to be. We’re all beautifully crazy

So we’ll see what happens. I’m just too exhausted with being afraid all the time anymore. It’s liberating to be able to write this all out. It’s nice to free myself from worry and to just enjoy life sweetly as much as I can – to simply live in the present moment.

UCLA

Dear Chancellor Gene Block and Vice Chancellor Janina Montero,

I didn’t know that the first “real world” job I’d encounter while finishing my bachelor’s degree at UCLA would be a highly aggressive attempt to fight for own my life. Cancer seems to thrive on chaos, especially when a biological deviation of the norm manifests in a young, healthy person’s body. Since my diagnosis with acute leukemia over eight months ago, I have been struggling to gain a sense of order and composure to what has been happening to me and other patients. I have seen firsthand the devastating look of horror and disbelief among patients on my hospital floor when they are denied the opportunity for a second chance at life when race and ethnicity matter in marrow donation matches. To be quite frank (but in a joking manner), it’s almost as if it could have been a nightmare that would have woken up Dr. Martin Luther King Jr. from the grave.

I didn’t know that my dreams of becoming a teacher would unfold so rapidly not in the form of being in a classroom among young children, but as an advocate against cancer. I quickly began to blog publicly about my experiences in order to provide a semi-transparent view of living with leukemia at 23 while retaining the integrity of my family’s privacy. Only a few weeks into my diagnosis, I began a grassroots movement to take as much control over the cancer by providing some education to my community about the realities of bone marrow donations and their live-saving opportunities to a host of other illnesses as well. To this very day, I use my story to gauge awareness, even though cancer spreads like wild, delicious gossip among those who may not understand or would want to sympathize with its overwhelming prospects.

I didn’t know that I would find myself thinking about what I learned in an old course I took at UCLA entitled ”German 59: The Holocaust in Film and Literature” as an intriguing way to cope with what was happening to me. Surprisingly, I found inspiration in the bravery of Holocaust victims and examined the human condition under extreme circumstances. During long hospital stays that lasted over a month, I read the works of Nelson Mandela to find the endurance to stay in isolation just as he did when he spent 27 years in prison before his release to become a national figure in South Africa.

I may not have been the best student at UCLA. But if there’s one common denominator I know among Bruins is that of excellence in what we do for our communities. I also think many people do not know that we’re not just students who attend class in flip flops – that we’re very much activists … that while we do a lot of talking and talking, we turn those actions into materialized form by making it happen. Once we get an idea going, this school “runs with it up a storm” and makes sure it turns into a feasible reality.

My greatest wish from this personal tragedy is to find matches for other patients in dire need for their lives to be saved, but it’s absolutely crucial that I have the university’s full support. I hope the visit today from one of my best friends, one of my best advisors, and the best coordinators from Asians for Miracle Matches can provide a glimpse into the sheer urgency of this unprecedented issue:

“Human greatness consists ultimately in nobly accepting the responsibility of being what we are; human freedom, in the personal working out of our fate in terms appropriate to ourselves. Though we may be innocent, we are all potentially guilty, because of the germ of self-sufficiency and arrogance in our nature. We must remember always that we are only man and be modest in our own conceits. Our place in the total pattern of the cosmos is only finite. That is not to say that it may not be glorious. Whatever our circumstances, we can achieve and endure through to essential greatness. It is not what fate has in store for us that matters, but what we do with it when it comes. No power, no imposition, no catastrophe, can uproot the personal dignity of each human being. The seeming caprice and unfairness of life, striking down some down and pampering others, is only the beginning of the Great Encounter. Both the choice and the destiny are ours.” — Paul Roche, Foreword to Oedipus Plays of Sophocles

Sincerely with the best of my intentions,

Janet

I’ve elected to undergo roughly 4 more weeks of additional chemotherapy to further reduce relapse rates by 1-2% extra. This puts me at a completion date that may not be done until the beginning of summer. It’s been about a week since one of my physicians introduced the protocol to me that will call for the reintroduction of some familiar chemotherapy soldiers that I thought I relieved from their duty a long time ago: vinchristine, dexamethasone, aspariginase, and doxorubicin. These soldiers will be cycling through intensively in my entire body and let me be direct — I am scared out of my wits and completely dread the day I need to restart them all. Why? Because I know exactly what I’m going to go through with three of those drug agents … I can safely say that after six rounds, the side effects become second nature to me. I will, probably for the most part, become incapacitated again.

Here’s an honest conversation with one of my favorite nurse practitioners to the best of my memory:

Me: “Will this suck? Will it be bad? (In other words: will I feel like I’ve gotten hit by a truck multiple times?)”

NP: “Pretty much. You’re also going to end up neutropenic.”

This is optional and I don’t have to do it. However, every cancer patient’s worst nightmare is relapse … and I am not taking my chances if there’s a decent opportunity for these chemotherapy soldiers to save my butt. With a slightly heavy heart, let’s begin Round 7 out of 8 total now. I look forward to the day I’m released from the shackles of leukemia.