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.

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…

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!

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)!

“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 A3M, AADP, 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!

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!

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

———————————————————————-

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.

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!

TIP FOR BLOOD CANCER PATIENTS: If you have a PICC line, do your best to take good care of it.  I highly recommend purchasing large plastic gloves that can fit your entire arm and tying two rubber bands tightly around to prevent water from entering your line when you shower. You can find these at medical supply stores or ask your hospital if they have any readily available for you to take home. I can’t stress enough that it is absolutely vital you do as much as you can to minimize potential infections.

A typical PICC line

A Friend Indeed

By: Hester Hill Schnipper

Hester Hill Schnipper, a licensed independent clinical social worker, is a breast cancer survivor and the chief of oncology social work at Beth Israel Deaconness Medical Center in Boston. She also manages an online breast cancer support group on the hospital’s website.

It can be painful and difficult to learn that a friend has cancer. You may feel that you don’t know how best to help or even, sometimes, what to say. You want to support and love your friend, but you may not know how. What’s more, your friend may seem unreceptive, easily irritated and generally not herself.

When a friend has cancer, the usual rules and responsibilities of a close relationship change. No longer will you have a 50-50 or even a 70-30 connection. Instead, for the duration of your friend’s treatment, you will need to carry at least 90 percent of the friendship, and your needs will come a distant second.

There will be times when your friend wants to speak only about cancer, and other times when he does not want to hear the word. So although you may think that the details and problems in your life are unimportant to someone who is struggling through chemotherapy, there will be times that your friend will be desperate to have a normal conversation and want to hear all about your job or relationships. How will you know which time is which? Listen to your friend’s cues.

Here are a few specific suggestions that may help you support a friend with cancer.

1. Wait for your friend to bring up details about a pathology report or staging. Don’t ask questions; let him take the lead.

2. Refrain from asking about the prognosis or, after treatment ends, whether the doctors know if the treatment has worked. (They don’t. Only the safe passage of time will answer this question.)

3. Remember that saying things like, “Anyone could be hit by a bus tomorrow,” is neither reassuring nor helpful.

4. Respect your friend’s individual experience. Do not tell her about others who sailed through chemotherapy or, alternately, suffered each day of treatment.

5. Send cards and e-mails and call often. You want your friend to know that you are thinking about him, and that he does not need to get back to you soon – or at all.

6. Call your friend if you are nearby or when heading out to run errands and ask if she needs anything.

7. Drop off a meal or do a carpool run or care for her children. A fabulous resource is www.lotsahelpinghands.com. This is a private way to organize useful help among friends and community groups online.

8. Offer to do something specific rather than saying, “Call me if you need something.” And then offer again later.

9. Send a small care package occasionally. This can be bubble bath or a couple of cotton scarves or trashy novels or some other small treat.

10. Ask your friend if he would like you to visit or if, later, he might like to come visit you. Dont assume that you know the best time to get together or when he most needs company and support.

Be ready to be flexible. Most important, stay close. All cancer patients find that some so-called friends abandon them after a diagnosis. Cancer can last a long time, and people move on. Good friends are those who are with us for the duration, who listen carefully and who say, “I’m here.”