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?

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.