Brave

“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:

Battle Scars

battle scars

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.

We’ve landed, Houston

I’m hanging in there, ever so fervently.

Sometimes things get worse before they get better.  Unfortunately, I had no choice but to fly to Houston for my clinical trial compared to getting it done at UCLA yet.  Time is of the essence and there is about 82% leukemia blasts in my body.

As soon as I landed in Houston, I went to MD Anderson the following day for what begins as a consult.  What actually ended up was a rude awakening.  Since then I had 22 vials of blood extracted for testing, two bone marrow biopsies, and a lumbar puncture performed on me within two days–along with intrathecal chemotherapy as prophylaxis to prevent leukemia from spreading all over my central nervous system.

It’s been extremely taxing on my body and I couldn’t hold a couple tears back when the physician assistants and nurse practitioners accidently hit a couple of nerves with the needle. It’s not their fault, but it was a purely physical response to the pain. Luckily, a nurse originally from Mississippi held my hand the enter time; it helped to have a sense of human touch to such a medieval process as the lumbar puncture (otherwise informally referred to as the spinal tap).

MD Anderson has been nothing, but impressive though. I’m supposedly in good hands, and it’s been ranked as the #1 cancer center in the nation according to U.S. News. But is that based on their funding, research, primary care, or … survival outcomes? I hope it’s the latter, because this is my last shot to go into remission.

This will be the third salvage to rescue me from leukemia.  The first two salvages did not work and barely removed any of the harmful blasts in my body.  As a result, this trial will utilize a drug call blinatumomab. It’s composed of anti-cancer properties that engage the T-cell antibodies to attack and destroy my unhealthy lymphoblasts. Specifically, it’s been designed to target the CD-19 and CD-22 protein located on the surface.

The most common side effects consists of fevers (pyrexia), headaches, fatigue and tremors. They are caused by the break up of cytokines which I’ve heard is a good sign that I am responding to the drug. The regimen will involve at least 9-15 days of hospitalization as an inpatient followed by 29 days out outpatient follow-up and then two week of break (in which I pray that I am healthy enough to return home!). That is one complete cycle, and I can have a maximum of five cycles. However, my stem cell transplant physician believes that if I get well after one or two cycles, I should immediately move onto a transplant. While the rate of remission is 72% among adults with refractory/relapsed pre-cursor B-cell acute lymphoblastic leukemia (wow, that’s a really long diagnosis) for this drug, there is a considerable 25% death rate in the transplant process. Overall, my leukemia and transplant physicians believe I have a 30% survival rate overall. Although these aren’t good numbers, I think we all know it’s better than zero.

It’s been difficult adapting to Houston. It’s my first time in Texas, and I haven’t had the time to explore the area other than my hospital. Fortunately, I had a wonderful chance to meet Roger, a three year post-BMT survivor who had MDS (myelodysplastic syndrome which equates to bone marrow failure) who had been treated and cured at MD Anderson when physicians initially believed he had no opportunity to make it out alive. Seeing him standing strong on his own despite the labored walking really made me realize how cruel leukemia when it doesn’t take our life in lucky cases, but leaves some patients with chronic pain and complications that may last a lifetime. Even with all this happening, Roger founded The Giving Group (http://thegivingbackgroup.org/) which he dedicates to holding stem cell and blood drives, as well as providing nourishing meals to kids. It was truly an honor to meet him, and he treated my family to a delicious meal with some regional delights like BBQ ribs! The food was great and although I’m on my veggie diet, I couldn’t help but become a carnivore that night giving thanks to the meal and compassionate people like Roger.

I do have a couple of setbacks. Namely, although I’ve completed testing for the trial, I still more preliminaries to finish including an EKG, more blood to give and. These are required by Micromet, the company sponsoring my trial, but recently I believe Amgen bought the rights to access the drug, so I hope this will expedite everything. Truthfully, I will not survive if they do not start soon with the trial, since 82% of the leukemic cells are in my body, leaving very little space for me to produce essential blood like my red blood cells, platelets, and white blood cells. In fact, I barely have any neutrophils which has made me prone to infections. The lack of red blood cells makes me have headaches and dizziness. I bruise easily with some scars on my legs when the lack of platelets disable my ability to clot up wounds. I’m a walking disaster and a complete mess. I cannot proceed unless they finally approve me for the trial in which I could be completely rejected from participating in the trial and sent home. I really hope they don’t this, especially after all I’ve completed for them. I’m young and in considerably good shape (despite my illness) to endure it.

Under critical care, my mother had to put me in a wheelchair and escort me to the hospital. Being in a wheelchair again reminded me of the things I occasionally take for granted — the use of my two legs and just the general feeling of being helpless and disabled.

I’m looking at roughly six months (half a year, yikes) of staying with MD Anderson for both the transplant and clinical trial. I never had a chance to stay goodbye to my family and friends thinking that I would simply fly to Houston for a consult and be able to return home to make a decision of going to UCLA or MD Anderson. To be honest, I wanted to go to UCLA, because that’s where my social support system is located. In this day and age, I know that with Skype, Facebook and phones to keep in touch but I’m old-fashioned and nothing beats seeing someone in person with the opportunity to give them a hug. I secretly wish my family and friends can fly out to see me, but in reality I know that not everyone has the means to do that.

I have gotten a lot of questions about how people can help. I feel so guilty, because I get the sense that I’ve been nothing but “taking” from the generosity of not only family and friends, but even strangers I’ve never met. However, if you are able to help, this is what I need the most (some of them are free to give!):

1. Prayer requests for admission into the trial and no more waiting. If I don’t get actively treated soon, I will die from leukemia overcrowding my immune system. I will be living on borrowed blood from compassionate donations from healthy individuals.

2. I hate asking for money, and did not anticipate that I would need to fundraise. If you’re not eligible for as a marrow/stem cell or blood donor, you can send me a small donation which will go directly to my related medical expenses such as –

a. hospital co-pays (ranging from $25 per outpatient visit to $300 for inpatient admission)

b. monthly lodging fees (about $700) for my caregivers and me to stay pre and post transplant for at least half a year (it’s one of the cheapest places we could find for the space and rooms provided)

c. rental car fees (ranging from $30 to $50 daily)

d. hotel charges (starting at $39 a night for about a week’s stay as we jump from one hotel to another)

e. expenses not covered by insurance which may include a portion of my transplant and follow-up care

f. flight expenses for my caregivers who are balancing work along with taking care of me approximately 1,800 miles from home (averaging $500 for a round-trip flight)

g. protection coverage into a high-risk insurance pool when I turn 26 and am not a dependent on my parent’s plan, or begin paying COBRA premiums starting in 2013 (I don’t know how much they cost)

h. gas expenses to/from the hospital (about $3.75/gallon, thankfully this is better than California which is roughly $4.40/gallon)

i. prescription co-pays for at least 15-20 medications a month (approximately $100)

j. hospital parking fees at $15/daily

I estimate that i need to raise at least $20,000. But I won’t be a stagnate taker; I’m trying to give back and pay it forward by planning drives in Texas and working with Roger on that… we’ll go ahead and reach out to these communities with volunteers and the Be the Match program. On good days, I will try to work on applying for grants with social workers to minimize the amount I need to fundraise, so perhaps I will be able to update what I really need. I don’t want to take anything I don’t need.

You can donate on the Helping Janet homepage via PayPal. If you’re making a $20 or more donation and you live near Los Angeles, buy a ticket to a benefit concert we are hosting on May 28th featuring a wonderful lineup of artists who have graciously donated their time to performing for you and raising awareness about blood cancers! Or you can order a t-shirt from our friends at Fear to Faith Clothing.

I sincerely thank you for keeping me in your thoughts and prayers. If you’ve followed me from the beginning, it’s been quite the journey. I won’t go easily and will be giving my best fight to this war. Most of all, I want my life back and privileges I *think* I deserve like finishing graduate work in the healthcare field (then becoming a teacher when I gather more life experience), marrying my soulmate, becoming a mother and if I’m lucky enough becoming a grandmother someday.

I should get going since I’ve apparently written a novel already! Until then, please take good care of yourselves and smile everyday :)

PS. I’ll be working on my novel in my downtime, just in case I run into medical debt. Or if I don’t, it’ll be nice to be able to pay for graduate school. By the way, does aggressive relapsed leukemia count as a terminal illness?

We meet again…

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.

Preventing Cancer In Your Lifetime

*names have been changed to a randomized letter for privacy protection

Happy belated Familygiving, Friendsgiving, and Thanksgiving!

I apologize for the delayed updates regarding my health status, but I figured no major news is good news. Life has been treating me well lately, and I am honestly very grateful that I’m not spending the holiday season heavily isolated within the confines of four walls. However, it has gotten increasingly busy — my desk alone is brimming with paperwork.

Health:

With the help of my awesome nurse practitioners (they remind me of Florence Nightingale) and cardiologists, I’ve been able to increase my heart’s ejection fraction from 21% to 37% since mid-October. (The normal parameters for a healthy ejection fractions runs approximately from 55% to 70% to the best of my knowledge.) This is definitely progress in the right direction, and admittedly I was kind of surprised that it jumped up so quickly in a month. Combined with weekly moderate exercise and healing foods, my goal is to reach the normal parameter by June 2011.

Blood counts are excellent. I got my flu and Tdap vaccinations!

Patient efforts:

I’ve been working with my dear friends and the hardworking staff at the Asian American Donor Program (clearly running out of adjectives to describe all of these under appreciated heroes) to identify more patients in need of a marrow match. Recently, we were able to help connect 18-year old Samir (South Asian) and 38-year old Erick (Hispanic/Latino). Samir came to my indirect attention from one of my best college friends, *E (who is marvelous and studying to become a physician assistant!), and Erick’s need has been relayed to AADP by my amazing social worker, *T. To find out more about Samir and Erick’s need, please visit www.aadp.org and click the “Stories” tab and “Now Searching”.

The power of knowledge:

I have to get back to studying, but I wanted to leave you all with a Christmas gift. It’s actually not in the form of a physical gift per se. A lot of you have asked me about how cancer has changed my life — and to be honest — it has made me become very self-aware and concerned about preventing other people from suffering the onslaught of any type of cancer.

At the risk of sounding overly didactic and as if I’m a college professor assigning reading to students, I feel strongly that everyone should read the following two articles (I’ve provided the links below):

1. Time Magazine’s “Cancer, Cancer Everywhere” : Published in May 2010, they have investigated the top 10 ways we can reduce our risk of getting cancer.

2. Yahoo’s “Is Your Health on the Line?” : Published in November 2010, they examine how the 21st century’s wireless technology and communication networks may negatively affect our health in discrete ways and the measures we can take to become safe consumers of major electronics we find somewhat hard to live without…

Happy holidays! Back to studying…

UCLA Mega Marrow Drive: October 13-15

I’m extremely excited that A3M (Asians for Miracle Marrow Matches) will be returning to the UCLA campus for a mega marrow drive. Thank you so much to the Lambda Phi Epsilon fraternity brothers for sponsoring and hosting this event. Bruins, please let your friends know that they can register at the following locations:

Wednesday, October 13: Court of Sciences (10 am – 2 pm)

Thursday, October 14: Court of Sciences (10 am – 2 pm)

Friday, October 15: Bruin Plaza (10 am – 2 pm)

If your friends are indifferent, please feel free to share my story with them. Here’s some coverage from last spring quarter’s Daily Bruin to bring them up to speed: http://www.dailybruin.com/index.php/article/2010/05/ucla-student-janet-liang-promotes-bruin-health-wee

It’s safe enough to say that even Vice Chancellor Janina Montero believes the shortage of minority donors is a pressing issue that needs to be addressed: http://www.janetgliang.com/2010/04/29/hearing-from-my-fellow-bruins/

And if you’re already on the registry? Here are some other ways you can still help out:

1. Ask your professor(s) for permission to make a brief classroom announcement and/or to chalk up their boards with the drive info.

2. Too shy? Ask your TAs for permission to make a brief announcement in your discussion sections. (When I was an undergraduate, I found that my teaching assistants were more than willing to spare a minute or two in the beginning of class when I publicized the work of causes and organizations I believed in!)

3. Word of mouth is more powerful than you think. Even talking about it with your roommates or lab partners who have no clue that they can help save someone’s life may be a catalyst towards a meaningful conversation.

And Bruins, if you’re interested in volunteering during the drive, do not hesitate to contact Ayumi Nagata at anagata@ltsc.org

We are the Mighty Bruins! Go UCLA!

Heart Failure & The Michelle Maykin Protection Donation Act

Wow! It seems like I completely disappeared from the radar … my apologies for blogging less frequently than I would have liked; besides the day-to-day activities that consume most of our time, I was actually hospitalized for approximately ten days in early September with another new diagnosis: severe heart failure.

It sounds as scary as you can presume. Now instead of embarking on the expected litany of the “woe is me” and “thou has suffered so much” self-pity (which I actually did do!), I must say that I am just as surprised as you probably are! Remember the medical mishap that I encountered in early August with an emergency CT scan from my healthcare team with abnormal liver imaging? The shortness of breath? The persistent non-productive cough? Even a new onset of pedal edema? I finally received a long-awaited consultation from the gastroenterology and liver transplant team and learned that my enlarged liver is only a secondary issue; it turns out the true heart of the problem (no pun intended) is a severe case of congestive heart failure. After an immediate echocardiogram scheduled and continuous labored breathing on my part, a nurse practitioner from the cardiology department alerted the team that I needed to be admitted immediately for emergency care. Reminiscent of my admission for induction chemotherapy, I was immediately wheeled off (literally) with a glorious oxygen tank to the ER.

The accused cause of this whole medical fiasco just when I thought I was on the verge of good times ahead? Chemotherapy soldiers doxorubicin (also known under the alias: adriamycin) and mitoxantrone. Apparently the transient toxicity of these two chemotherapy drugs in my past year-long regimen severely weakened my heart, particularly the rate of its ejection fraction, which is a term often used in cardiovascular physiology to describe the fraction of blood that pumps out of our heart ventricles with each beat.

But fear not! For those ten lonesome and (admittedly) pretty miserable days in the hospital, I learned a lot about what it takes to live with this condition — dare I say, even an extremely long life, though sometimes in the back of my mind I realize that my overall mortality potential may not be the same as it was before. I’m now on additional medication that will strengthen my heart slowly over time. And you can bet I’ve become a new fan of the American Heart Association. I have a lot to share about everything I’ve learned to maintain a healthy lifestyle and hopefully that will be in another post someday so that other patients can benefit from this information. Conclusively, I hope it brings much awareness out there that patients who suffer from blood diseases not only deal with the fatality of their suggested prognosis, but also the underlying complications that may surface later on in their overall treatment. The road is not easy; the bumps and hurdles are still there but over time I’ve found that if you keep the faith, you can really overcome whatever else is thrown at you. This has been an incredibly indispensable life skill that I’ve learned at 23.

Even with these setbacks, I’m thankful for some exciting news from the Asian American Donor Program (AADP). The Michelle Maykin Protection Donation Act has now been signed into California LAW by Governor Schwartzeneggar. According to the bill’s provisions, it provides “private sector employees that donate life-saving bone marrow or organs paid, protected leave from their employment”. For a concise and brief description about this new law, please visit:  http://www.aroundthecapitol.com/Bills/SB_1304/

This is a huge win! I’d like to thank everyone who signed the grassroots petition and pledged support. I can’t even begin to fathom the meaningful, widespread impact this piece of legislation will have on patients. Tomorrow, I’m getting a big cone of Caramel Apple Ice Cream to celebrate (I’m five years old again)!

A Year in Review – Anniversary

About a year ago, I remember sitting by the bus stop waiting for the service line from the Santa Monica Big Blue Bus and its returning route to UCLA. Those were the longest 28 minutes of my life as I contemplated what I had just heard from a rheumatologist:

“I suspect that you have a significant blood disorder problem, Ms. Liang, but we don’t have enough information to conclude what it is exactly. There’s a very small chance that it can be as life-threatening as leukemia. Here’s the number to one of the best hematologists within UCLA Medical Group. I’m going to give you an immediate referral; call him as soon as possible.”

Fast forward a year now and here I am – completely stunned that it’s already the one year anniversary of my diagnosis on August 24th. What amazes me the most is that I’m still alive and relatively well. Sometimes, I actually have to pinch my own arm just as a small reminder on how grateful I am to have gotten past what may be the largest ordeal of my young life.

A snapshot of yours truly during a long hospital stay

OUR ACCOMPLISHMENTS

When I started HelpingJanet.com last year, I had no idea that I’d be on my way to managing a pseudo/unofficial non-profit organization. Thanks to the network of family and friends who advocated on my behalf and other patients, I am incredibly proud to announce that we’ve reached 5,232 donors! I still remain true to my word and would like to reiterate that I will not stop until we reach 15,000 donors. With that said, I’d like to thank James for renewing the website’s subscription for another year and his diligence in making sure that everything runs smoothly as our outstanding webmaster.

On that note, a dear college friend of mine from UCLA  just told me about a week ago that she may possibly be a marrow donor match for a patient in need! You can’t even imagine how ecstatic I was to hear this news. I wish her the best of luck as she begins the noble process of saving someone else’s life on her own voluntary accord.

The good news doesn’t end there… and hopefully you won’t mind as I continue to spout off the list of achievements from an amazing community that responded to my plea for help:

* Pahole, winner of the Mr. Hyphen pageant, has tirelessly advocated for leukemia patients and generously donated $500 to the Asian American Donor Program on behalf of HelpingJanet.com

Spike for the Cause, a Reverse Coed 4s Grass Volleyball Tournament held in San Diego, managed to raise well over $500 for HelpingJanet.com

* Last spring, a high school friend of mine (who is now a full-fledged teacher) raised $2,500 to find a cure for blood cancers by running a marathon with the Leukemia and Lymphoma Society.

* Last June, a college friend of mine from UCLA accepted a position as a community outreach coordinator for Asians for Miracle Matches.

I haven’t even begun to tell you the countless number of family and friends who went on radio, television, and print to spread awareness about this particular illness. And as you can easily guess, I am pretty overwhelmed by the outpour of community support that still continues to remain strong today. As a result, I am hoping that reaching 15,000 donors will be accomplished within the next year as I work with A3MAADP, and Cammy Lee Leukemia on their upcoming college campaigns where we will encourage young adults from college campuses nationwide to join the National Marrow Donor Program. I’m thrilled, excited, and can’t wait to contribute as much as I can to this movement.

HEALTH UPDATE

As for my health, I am still hanging in there with the results of my latest CT scan. I consider myself a lucky woman when the results showed no evidence of “the scary stuff” such as lesions or tumors of any sort. They did reveal that I have a slightly enlarged liver potentially caused by the oral chemotherapy pills I have been taking consistently which we have now stopped temporarily to see if it will mitigate the problem. Unfortunately, some fluid has developed in the lining of my lungs (called the “plural space”) and it has been causing me to experience long, uncontrollable coughing fits. My only source of relief is a liquid bottle of promethazine/codeine that has been prescribed to not only suppress the coughs but to also help me sleep better at night. I have to admit though that it’s kind of frustrating (whether through hospital bureaucracy or plain lack of attention) that I need to wait until early September to see liver specialists who will be able to provide more insight to this issue. Forgive me for my confusion and rant, but this seems to be quite a serious problem and I am very disappointed at my hospital institution for not recognizing it as a priority issue that needs to be resolved as quickly as possible. Consequently, I don’t have much to report here except that I am waiting patiently to see the liver specialists soon. In the mean time, my health care team hopes that by remaining off the chemotherapy pills for now, the complication may actually self-resolve on its own. I hope so too!

COUPON FOR GAP, BANANA REPUBLIC, AND OLD NAVY SHOPPERS

Gap promotion for the Leukemia and Lymphoma Society

Finally, if you are an avid shopper who is on the lookout for fall/winter clothes or you simply want to get a head start on your back-to-school shopping, please take advantage of this Give & Get coupon (please click link). You can enjoy 30% off your purchases from any GAP, Banana Republic, or Old Navy store and the Leukemia and Lymphoma Society will benefit from 5% of what you spend! Be sure to use the coupon between this Thursday, August 26 to Sunday, August 29 since it’s only good for 4 days.

Thanks for celebrating my one year anniversary with me. Here’s to many more anniversaries to come!

Dare You To Move

I’m scared out of my wits. This is definitely one of those “why me?” moments. An emergent CT scan has been ordered by my healthcare team to investigate a potential complication from chemotherapy. For about a month now, I’ve been experiencing unusual pain in my abdomen that has made it somewhat difficult for me to breathe or move around normally.

It has also been a rough couple of days. I found out that another patient friend of mine, Emily Cai, had passed away from battling Mr. Leuk/Luke. Unlike most patients, she had already endured two transplants, but eventually her body was simply too weak to withstand the third trial of intense chemotherapy. I’m actually still pretty numb from hearing all of this … my family and I got to know her inside and outside of the hospital as a special friend who had one of the sweetest dispositions imaginable. We shared the same team of physicians and nurses. The friendship was so easy with her despite our significant age gap and differing life experiences. As a young mother to three children, she fought courageously with such a feisty attitude that was truly …. undeniably admirable.

Despite all of the unsettling news … I see no other option than to simply continue celebrating life and living. I have to admit that I’m not ecstatic about consuming two whole bottles of Barium Sulfate Suspension in preparation for the scan, but the more quickly I act … the sooner I’ll have the necessary results to move forward.

I worry. I’m afraid. I don’t know what’s going to happen. But as long as I keep my dreams steadfast and maintain the confidence that I’ve had since the first day of my diagnosis, I know surely that I’ll move beyond another obstacle.

Thanks for keeping me in your thoughts and prayers!

Rest in Peace Little Barry Pham

It’s with great sorrow that I write today about the passing of 16-month old Barry Pham. I have never met the little superhero or his immediately family, but had been following his story pretty closely behind-the-scenes with the Asian American Donor Program and Team Matthew. We both had acute lymphoblastic leukemia that was classified “bi-phenotypic” in nature. A simple glance at his blog shows all our medical similarities … down to the core of the same chemotherapy soldiers called upon to defend us from the horrendous onslaught of Mr. Leuk/Luke.

B is for Brave Barry

I could go on and on about how there is no justice in this world or why it makes no sense to me that young babies have to endure the pain of life-threatening illnesses, but it leads us nowhere. In memory of Barry’s heroic efforts and exceptional qualities at only 16-months of age (which I dare say should put him in the House of Gryfinndor for all you Harry Potter fans), I want to ask if any of you can spread the word about two particular drives held for the Vietnamese community nationwide:

Midwest:

Carthage, Missouri on August 6th and 7th 2010

1900 Grand Avenue, Carthage, MO 64836

9:00 am to 9:00 pm

For more details about this particular drive and how you can help, please contact Ted Nguyen, the Vietnamese Outreach and Recruitment Coordinator for A3M, at tnguyen@A3Mhope.org

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Northern California:

San Jose, Grand Century Mall on August 14, 2010

1111 Story Road, San Jose, CA 95122

11:00 am to 3:00 pm

For more details about this particular drive and how you can help, please contact Annie Doan, the Vietnamese Outreach and Recruitment Coordinator for AADP, at annie@aadp.org

It is actually best if you are able to crumple up your sleeves and volunteer an hour or so of your time to recruiting marrow donors to join the registry. All you need to do is contact those coordinators I’ve listed above, and I assure you that they will get back to you as soon as they can. Sitting behind a computer screen and pressing a button to share this is fair enough in the internet community, no doubt, but sometimes it all comes down to face-to-face persuasion to save someone’s life. I can’t think of a better person today that we should to do this in honor of than little Barry.

For more information about his courageous story, please visit his website at: www.savebarry.org

Thank you so much, Barry and his family, for inspiring me with your battle while I was in the hospital during my intensive rounds of chemotherapy. My sincerest condolences to everyone who knew him, but at the same time I have a lot of hope that because of Barry’s bravery and impact in the world on his very own terms … many children in the future will not suffer under the truculence of Mr. Luke/Leuk.

The Civil Rights Issue of My Generation

Today’s post is actually non-sequitur to what I usually write, but I felt that it was so entirely compelling that I can only do it mere justice by acknowledging what has transpired. It’s a wonderful day for California with the overruling of Proposition 8. It’s amazing that this has happened in my lifetime even though it’s only at the statewide-level. Hearing remarks from like-minded friends has renewed my sense of hope for what will ensue at the Court of Appeals and finally to the Supreme Court.

When I was in high school, I remember witnessing an intense debate between my classmates over this civil rights issue. To be quite honest, I didn’t have much faith in our legal system at the time, even though I participated heavily in a debate team and specialized on topics that involved making a clear-cut analysis on judicial review. During a lunch hour on a regular school day, we wrestled with the notion of how marriage should be defined in American society. Most of my classmates fervently believed it was strictly between a man and a woman. A minority believed that people should generally have the freedom to marry whoever they pleased in the name of love. I agreed strongly with the latter. But never did I believe I would see such a day when an entire ballot proposition would be overturned. I guess you could say that my practical heart was seeing the glass half empty.

What struck me the most about today’s changing political current can be summarized easily by U.S. District Chief Justice Judge Vaughn Walker: “The evidence did not show any historical purpose for excluding same-sex couples from marriage, as states have never required spouses to have an ability or willingness to procreate in order to marry. Rather, the exclusion exists as an artifact of a time when the genders were seen as having distinct roles in society and in marriage. That time has passed.”

It’s 2010. It certainly is about time!

PS. Happy Birthday to President Barack Obama! :-)