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?
Autumn in January 