So I just received a phone call from Janet. She still recovering from the infection, but she told me she has moved past the lowest point and is slowly getting better.

But the main reason for her call was because she wanted to know what time the UCLA football game is, and who we’re playing.

Isn’t that the cutest thing?

Hey all. If you haven’t heard much from Janet lately, you’re not alone. Thankfully, her mom was nice enough to return my call her in place, and here’s the news…

Yes, Janet is fighting a little bit of an infection right now. It was kind of inevitable with her low white blood cell count as a result of the chemotherapy. Her mom told me that she’s too weak to even talk on the phone. Today, she had to get another blood transfusion.

I’m sure some of you were planning to visit soon. I haven’t talked to her about it, but whether you do or not now I’ll leave up to you. Of course, if you are sick or think you might be sick, it might be safer to hold off. If you are concerned about getting sick, you do have your own health to worry about, and no one would blame you for it. Otherwise, I know if I were in her position, I would welcome the love and support of my friends by my side.

Hi all. I received this e-mail from Sara Arroyo, one of Janet’s friends about a Light the Night Leukemia walk at UCLA this Sunday for Janet and other people who are fighting against Leukemia. It sounds like a great thing to do and I wish I could be there. Here’s the info

Hey James,

I am one of Janet’s friends here in L.A., my name is Sara Arroyo. I received your email from her today when i visited her today in the hospital. I visit her about twice a week and try to bring her as much good energy as possible. This Sunday Iam participating in a Leukemia walk hosted on the UCLA campus called Light the Night and I wanted to give you the info so that you may post it on her blog for anyone in the L.A. area who might be interested in being a supporter for people who suffer from Leukemia.

Here’s the summary of the info, the website with more info is at www.lightthenight.org

What: Light the Night Walk, sponsored by the Leukemia and Lymphoma Society
When: Sunday Sep 13th, registration opens at 4:30pm walk starts at 7pm.     The two mile walk takes about less than two hours.
Where: UCLA campus, Drake Stadium
Why: to promote and fundraise for Leukemia research, to show our support for our dear friend Janet!!
What to wear: red if you know someone who is suffering from a blood disease, white if you are a survivor, gold in memory of a person lost to these diseases

If you can also write my email, saraesc [at] ucla [dot] edu in case anyone wishes to walk along with me and my Janet poster that would be great.

Thanks, Sara

The smell of lemons surprisingly brings me back to sanity. My dad bought me a single lemon to help ward off/distract my nose with the heightened sense of smell I’ve acquired. The past few days have been pretty rough. I’ve been lying in a comatose-like state in bed all day, sleeping time away … today is my first back on the laptop. 

So what have I been up to? Lots of non-stop vomiting. Tons of nausea. Extreme fatigue. I didn’t eat for six days. Everything I tried to get down would just come right back up. Pounding headaches. No appetite. Food no longer holds its former, enticing allure. It’s my body’s natural response to the chemotherapy. I haven’t gained any sense of relief yet until today …. in moments and pieces of times where I can catch a breath and take a break from all the medicine and drugs they input into my body. My doctors wanted to perform a spinal tap on me a few days ago, but once they saw how much I was struggling, they took pity on me and decided to delay the procedure for a few days.

Strangely enough, I’ve been having dreams about running errands like any other normal person every night. Things like going to the grocery store to pick up a box of strawberries. Or turning the door knob to my college apartment. Or even writing essays! My mind is strong and active, but my body otherwise. 

They finally gave me medicinal marijuana after trying all sorts of powerful anti-nausea medications …. in the hospital, it’s masked in a pill form called marinol. Such a beautiful, beautiful drug. It helps to prevent nausea while it increases your appetite. I asked the nurses why they don’t give marinol to patients in the first place … after all, it actually works extremely well to help you deal with the side effects …. and their response? “Honey, it’s all politics.” 

So really, what’s chemo like? For those of you who have watched the Harry Potter 6 movie, the best analogy I can come up with is the scene where Harry attempts to feed Dumbledore a deadly potion so that they can finally obtain the Horcrux.  

POSITIVES:

1. Preliminary results showed that I do not have cancerous cells in my cerebral fluid – spine and brain. There could be a few hiding that the labs couldn’t detect, so they’ve done two spinal taps already on me with chemo injected just to be safe. 

2. I haven’t gotten an infection yet. *knock on wood*

3. White blood counts are slowly rising on a positive trend

4. Nausea and vomiting reduced to only maybe once or twice a day now. I eat sour patch kids candy to ward off the nausea and it surprisingly works  

Sometimes, I wonder if having leukemia is really a gift. Perhaps a strange, unorthodox gift that gives you a whole new appreciation for life’s simple pleasures — all I want to do when I get discharged from the hospital is to grab my favorite Chipotle Burrito Bowl and a Jamba Juice. And maybe do some cartwheels in an open, grassy field.  

Hopefully only less than two weeks to go before I get discharged!

Hi everyone. Just updating Janet’s condition.

The head doctor made her rounds and stopped by Janet’s room to check on her condition. She’s finishing up her first round of chemotherapy… the hardest and strongest round of the medicine. She’s feeling a little nauseated and sick, but according to the doctor, it’s as expected and everything’s going well thus far.

I also wanted to let you guys know that if you are planning to visit, now would actually be the best time. After the chemotherapy is done and it starts spreading throughout her body, her white blood cell count will go to 0 and will be at high risk of infection, which will put a limit on visitors.

Greetings I am sitting here writing in my bed at the UCLA Ronald Reagan Medical Center. I’ve finally been admitted and just started my first dose of chemotherapy today around 6:00 pm through an IV. I’m really sorry if I haven’t responded to some individual e-mails/comments/notes yet, but please rest assured that I do read them; it just takes me a while to get back with what goes on during the day. That’s primarily why I’ve set this up to be able to chat with everyone at once!  

It’s been a whirlwind so far … that much I can tell you! I think I’ve seen almost 7 different physicians so far, 6 different nurses, and many other specialists … and I am having a hard time keeping track of all their names. Everyone has been extremely friendly here at the hospital. UCLA’s hospital was just opened last year, and it’s one of the very few hospitals around here composed of only private patient rooms. I have my own bathroom and there is a in-room service, gourmet dining everyday for breakfast, lunch, and dinner. There is a team of attending physicians, fellow physicians, intern physicians, nurse practitioners, general nurses, and care partners who attend to my every need to the point where I feel absolutely dissolved of any responsibility to do anything on my own. It’s definitely nice to be spoiled! In essence, it almost feels like a nice four-star hotel room with many people running around to make you feel as comfortable as possible.

However, not everything is completely splendid or grand and here is where the realist in me breaks out with full force: I get very little sleep in the hospital. True, I’m usually stationary in bed attempting to avoid morning soap operas on TV with limited channel selections. But every half hour, someone comes in either to check my vital signs (i.e. blood pressure, temperature), changes my pint bags for blood transfusions, injects medicine, draws blood, offers resources and support, or evaluates my progress. As a grown extrovert, I do love the human contact, regardless of the fact that I haven’t known these people very long. But it does get tiring when they wake you up eight times during the wee hours of the night to do all of the aforementioned. I’ve gained an entirely new perspective on why patients feel exhausted often. If you ever do visit a friend and they’re sound asleep, just understand that they’ve probably been up all night getting medication  

I’m feeling good so far. I get hungry often, surprisingly, and order a lot of food at once whenever I get the chance. I figured I should probably eat a lot now, because once the chemotherapy hits aggressively, I will probably begin losing the appetite. 

I finally met my new doctor, who is the attending physician during my stay here at UCLA. (My family and I have decided that we should begin treatment here first and once the chemotherapy tampers off a little, I can look into transferring to a hospital up in the Bay Area.) Her name is Dr. Mary Territo, a nice old woman around her late 50s to early 60s, one of the oldest senior faculty members at this hospital with over 35 years of experience in this specialty. I found out that they’ve classified my case as bi-phenotypic leukemia, because I have a combination of mostly acute lymphoblastic leukemia with a little tiny bit of acute myeloid leukemia (a cancer of the myeloid line of blood cells). It doesn’t mean that it’s twice as deadly; it’s just that the doctors will need to be a little creative when they assess my medicine regimen. 

If you’re around the UCLA area, please feel free to come on by. I love having visitors; just send me a message (e-mail or by phone if you have my number) a little bit ahead of time so that I can make sure that I’m well-rested to see you or not too sensitive to infections. There will be some days when my blood counts will be very low, and during those times I may need to limit the number of people I’m exposed to every day in order to reduce the chances of catching a fever or cold. 

The most recent blood counts: 

My recent CBC (Complete Blood Count):

White Blood Count – 2.67 k/uL (normal range is 4.1-10.9 k/uL) <– went up a little, yay!!

Hemoglobin – 10.9 g/dL (normal range is 12-18 g/dL) <– went up a lot, yay, of course through a blood transfusion, does that count as cheating?

Platelets – 143 k/uL (normal range is 140-440 k/uL) <– pretty consistent

From now on, I’m going try to end the entries with two positive notes in the face of all the negativity that surrounds the nature of leukemia. I am working hard to keep my mentality strong — mind over matter:

1. I am ready. I am ready for those night sweats, fevers, chills, tiredness, and exhaustion. Every time I am struggling to resist leukemia with all my force and might, I will be thinking about an army of people who are holding up pillars of strength to guide me through this war.

2. I have my youth to thank – sure getting it at 22 is not fun, but it also means I get the advantage of battling this at a fairly young age compared to doing it in my sixties or seventies. 

Well, the first dose of chemotherapy has officially completed. Time for me to catch as much sleep before the nurses attack!  

Love,

Janet

Here's a glimpse of what my patient room looks like. Not bad, yeah?

Welcome to the new website. Hopefully it wasn’t too much of a pain to update your links and stuff. I will occasionally post here as well to let you know how Janet’s doing, and to provide updates on the donor drives, and the website itself.

Thanks again for all your support

P.S. If you subscribed to her blog via e-mail (clicking the link to use feedburner) before, please click on the link to the right or the link below to subscribe to this one. I will try to make both links work in time, but to safe, please use the new one. Thanks

Subscribe to this blog by email

This is a quick post before I need to head to an oral surgeon to get my wisdom teeth removed. Fun, I know. Oh well, it is nothing compared to what is probably going to come up next …

I got a call from my hematologist and it looks like what I have now is categorized as bi-phenotypic leukemia lymphoma. It’s so fresh in my mind that all I know is that I will now need to go through not only intensive chemotherapy beginning as soon as this Friday, but I will also need a bone marrow transplant in a couple of months. If I stay with the UCLA Medical Center, I will need to be admitted to the hospital by Friday. 

The trouble now are a couple of things:

1) I need to move back home for long term treatment. Need to find a doctor at UCSF or Stanford Medical Center. Luckily, my insurance is accepted. But where to start? This transition may be tricky. Time is of the essence. 

2) I need to start the bone marrow search now. 

And this is where all the help that you have all graciously offered may come into play very soon. I hate to get other people involved in this. I really do. But now my life depends on potential donors getting registered so that it increases my chances of finding the right match. Particularly Asian-Americans. 

We’ll need to talk to my brother about this, because he has a 25% chance of being my perfect match. I hate to put him through this. But I’ve been advised that I need to begin an aggressive search with the assumption that he may not be the match as well. 

Will you join my team? It’ll take an army to battle this sucker. I hate this. Did I say that already? Still in shock. Still confused. But I hear your thoughts and prayers. 

Love,

Janet

This is me saying no to cancer!

I just got back into LA from a restful weekend in the Bay Area watching movies and hanging out with old friends. Tomorrow I’m headed back at the UCLA Medical Center bright and early in the morning to do a second bone marrow biopsy and some CT/PET scans. These tests will determine the staging of lymphoma and if it has spread to any other vital areas of my body. In many ways, it is sort of a second, more definitive diagnosis that will enable my hematologist and other pathologists to work together on a course of action.

Believe it or not, I used to be really afraid of getting the bone marrow biopsy done. I had heard that it was quite a “medieval” procedure, in the sense that there’s nothing civilized about removing/extracting a small amount of your bone, fluids, and cells with a giant needle (yikes!) But when I first got it done last week, it was surprisingly relatively pain-free. I’m not sure if it was the distractions I brought in with me … chewing gum and listening to Boyz II Men crooning their sensational ’90s hits through my ipod. Dr. Rosove guides me through each step he takes with the procedure so that I can mentally anticipate the pain ahead. There’s a dull sensation at the end of the procedure similar to getting a minor toothache except it’s on your hip bone or like a bee sting that will go away in 24 hours. As a result, I’m no longer afraid of the notorious bone marrow biopsy. If yany of you should need to get it done in the future (which by the way, I hope you never do!!), don’t worry, you’ll be okay! 

My recent CBC (Complete Blood Count):

White Blood Count – 1.5 k/uL (normal range is 4.1-10.9 k/uL)

Red Blood Count – 2.28 m/uL (normal range is 4.2-6.3 m/uL)

Hemoglobin – 6.3 g/dL (normal range is 12-18 g/dL)

Platelets – 142 k/uL (normal range is 140-440 k/uL)

They are definitely very low, but I’m doing fine so far. In fact, I appear healthy and well-rested with no major symptoms that are usually expected. No swelling lymph nodes. No headaches despite the anemia. No dizziness. Nothing.  

So many of my closest friends in LA are leaving this week for the post-graduate real world!  I hope I get a chance to see them before they go off and become great successes. 

Until then … much love,

J

PS. If it’s easier for you guys, you can subscribe to the blog by clicking the link on the right side bar. It will automatically forward updates to your e-mail. Yeah, technology!

UCLA Medical Center

After much consultation and web advice from my wonderful boyfriend, James, who is ironically a Computer Science major (ah, the benefits of dating a nerd!), I decided to try my hand at blogging as an easy to way to keep in touch with everyone.

On August 14, 2009 I received a diagnosis for lymphoblastic lymphoma, a rare form of cancer that originates in the lymphocytes of the immune system. Essentially, this means that my immune system has been compromised, particularly in my bone marrow where the production of blood cells occurs – you name it – red, white, and platelets. While this is no good news at all, it is better than what we had originally feared — another blood disease called myelodysplastic syndrome (bone marrow failure) advancing towards leukemia. Lymphoma is not great, but it is the lesser of these two extraordinary diseases. It is treatable and cure-able. The odds for survival increase with my young age.

More importantly, I don’t intend to be a Debbie-Downer with the course of how I acknowledge my situation. For months now, I have been going in and out of medical clinics getting testing done. True, I am confused and shocked because it is such a rare disease – and I am only beginning to understand it. Yes, it’s something I definitely don’t prefer! But in the end, I realize that importance of the matter at hand is not to dwell on what has happened, but rather to be grateful that I live in a day and age where medical technology and knowledge continues to progress rapidly against the tide of illnesses. I am most appreciative of having the best support system, composed of family and friends like you, and one of the best hematologists at the UCLA Medical Center.

As a result, this blog will, for the most part, chronicle my journey through lymphoma. These are also the beginnings of a memoir as a twenty something year-old, composed of entries and “gems” from my life – similar to the celebrity biographies you find at your local Barnes and Nobles in which they tell you just enough that can be published without sacrificing the integrity of what needs to remain completely private to yourself and even those close to your heart. Sometimes the entries will be out of chronological order. It’s a quick glimpse into certain, extraordinary moments in time that I’d like to remember.

Thank you so much for your prayers and wishes. Hopefully this will be my special medium to communicate with you all! I love getting e-mails (the new snail mail these days), so if you ever want to send me a message, feel free to write to me at janetgliang@gmail.com

And finally, I say to lymphoma … BRING IT ON.