Project Michelle - Week 2 (Update from Mabel)

Michelle reports that everything tastes bitter. Apple juice or white rice—all flavors are now seasoned with chemical undertones. Comments like these remind me of how we take so much for granted. Going outdoors, taking a normal shower, eating fresh fruits. We tend to label everything as a right, when in reality so many things in life are actually privileges.

Thankfully, the bitterness doesn’t extend beyond Michelle’s taste buds. She has stated several times that she’s extremely lucky to have such an amazing group of family and friends. A young cancer patient stating she’s a lucky girl. Her words always snap me back into a mindset of gratitude.

Thank you so much to everyone who coordinated and helped out at drives this past weekend. We are off to an amazing start--we’ll be posting our current tally of registrants soon. Please keep up the amazing work.

It's Quiet. An Update (From Van)

I was about to go to bed. I had promised my friend that I'd get some rest tonight. For some reason, as I just looked at Michelle's peaceful face, it struck me that now would be a good time for my first post on Project Michelle.

Perhaps I realized the strange silence. Gone is the frantic typing on keyboards attempting to organize a nationwide effort. Gone are the grimaces and strains from Michelle's face that I have sadly become increasingly accustomed these past few days.

Until tonight, Michelle's sister Melanie and her best friend Mabel had been alternating spending the night by Michelle's side. Tonight being my first night here for Kill Leuk Round 2, I think the silence is a reminder that it feels like we never left. As if the months since her last round of chemo were just a dream...abruptly interrupted by Leuk and a new friend.

Many of us have spent practically every waking moment since Friday morning in the confines of this hospital. It makes me realize the dynamic that is developing. The outside world waits for blog entries - snippets that provide a peek to the inside.

What's going on inside right now? Appreciation and hope.

Appreciation for those that care about us and hope that this will become a dream that we all forget.

Hotel Michelle

The Luke Do approach is working well. I just concentrate on keeping my food down, ignoring the aftertaste the pills leave in my mouth, making sure I don't mess my gown (the meds do a number on my bowel movements) and taking things one minute at a time. I am letting everyone else do everything else for me. It's been pretty easy letting go because lately I am way to "out of it" to be concerned about what's happening outside my hospital room. Yesterday was probably the longest day in the hospital for me. I was fidgety and couldn't sit still, but the double vision made me stuck in bed. My sister bought me a pirate patch which helped for a little bit, but it became too uncomfortable to wear the patch, a mask and my glasses. I eventually took an anti-anxiety pill that helped me chill out. The pill did wonders and Mabel says I did a little dance during my walk outside (I don't recall).

I feel better today. Although I'm leaving the details to Van and Mabel, I want to thank everyone from the bottom of my heart for working so quickly to set up drives. They report to me that so many people have volunteered and it makes me so happy.

I'm having a platelet transfusion so I can get a spinal tap done by a neurologist so we can figure out what's causing the double vision. I took a benadryl like 15 minutes ago and I'm getting very whoozy. Good bye for now!

We need your help!

We need to find a match by JUNE 21, which means we only have six weeks.

So many of you have asked how you can help, and more than cookies, cards, and balloons, we desperately need to find a bone marrow match for Michelle. We would like to challenge each of you to coordinate a drive in your community within the upcoming weeks. It’s very simple to set up a drive, all you need is:

• A date and time
• An appropriate place
• A few tables and chairs
• Some volunteers (5 -10, depending on your expected turnout)

It’s very likely that Michelle’s match will be of Vietnamese and/or Chinese descent, but that doesn’t eliminate other ethnicities (Asian, Caucasian or other) from becoming her match.

Please contact us immediately if you think you could help set up a drive in your community (church, temple, school, workplace, etc): savemichelle@gmail.com

One day at a time

I am looking for a bone marrow donor match!!!!! Please get registered by attending a drive or ordering a home test kit. If you live outside of the Bay Area please check out the NMDP website for more bone marrow drives. Spread the word to your friends and family please.

Last night my sister said she thought that I should approach this next part in my "project" like Luke Do. Luke is a little boy who was diagnosed with Juvenile Myelomonocytic Leukemia at only 18 months. He had a really hard path to recovery, but successfully went through a bone marrow transplant and has been a happy go lucky kid ever since. (His father, an internal medicine doctor, Dr. Lam Do has been a guiding light to me since I first got sick. He works with my mom on the radio show to talk about leukemia and the need for bone marrow donors every week.)

At 18 months of age, Luke didn't know what was happening to him. He didn't worry about what was going to happen in the future or stress about all of the people that were taking care of him. He probably wasn't thinking about the D-word either. I am going to try to take Luke's - Be a Baby approach. I am going to take it one step at a time and not think about anything, but the present.

Sorry I am rambling, but I need to get to the hospital for my catheter surgery. I am getting the tube in my right chest. Later today we'll start the chemo (5 days in hospital). The neurosurgeon yesterday said that my platelets are too low to deal with the tumor in my head. He thinks it will be okay to deal with it later as it is right next to my left ear and is not doing much harm yet. He doesn't think it's benign....yes, I know....this has opened a whole new can of worms.

I will post more later...or actually I'll ask someone to post for me. (Need to learn how to act like a baby and get people to do things for me) :) Thanks for all of the messages and emails. They make me feel really great. Wish me luck!

My mom and brother drove up to SF to have lunch with Mabel and me at a Chinese restaurant as we are scrambling to deal with all of this. My fortune cookie said, "It always takes longer to get there than to get back." What the heck does that mean? To me, it sounds like I am going to have a rocky road ahead of me, but once I get through everything it'll be easy to get back to my regular (but wonderful) life.

Well we just found out that there's a new massive landslide obstructing my way on this road to recovery. My oncologist just told me that MRI results showed that I have a mass on the left frontal lobe of my brain. He doesn't suspect that this is related to my leukemia relapse....but honestly....how many things can go wrong at once??? He thinks it's a Meningioma, but doesn't know. We are praying that it's benign. Strangely, my oncologist doesn't think this mass is related to the double vision I have when I lean my head to the left. I have been crying and laughing awkwardly for the last 3 hours about this turn of events. I just can't believe this is all happening. It's like a crazy episode from Gray's Anatomy....

I have a consultation with the neurosurgeon in Redwood City tomorrow morning and if everything is good I will go into surgery on Friday morning for a biopsy of the mass. Tomorrow afternoon I have a consultation in Antioch regarding my surgery to put in my groshong. We will be driving all around the bay to get this show on the road.

Please keep me in your thoughts. I need all of the prayers and warm wishes I can get. My tears have dried up and I am very anxious to get everything figured out ASAP. What can I say... I'm scared sh*tless, but hanging in there.

unreliability of life

Just as things were getting back to normal again, I just found out 30 minutes ago that I've relapsed. There are 30% blast cells in my bone marrow (you should have no more than 5% blast cells in your marrow). My platelets and white blood cells are dropping. In 2 days I am going in to surgery to get my catheter placed (on the right side of my chest this time). I will start chemotherapy early next week. If all things go well, I will get a bone marrow transplant at Stanford.

Let me back track a little. On April 24th I had my regular check up with my oncologist and he said everything was looking great. I had normal blood results and was feeling like a million bucks. I had just started working full time again and there were a couple of very interesting projects that I was going to get to work on. My boyfriend just got accepted into business school at Stanford University and we were sooooo excited about starting the next chapter in our lives together.

Just 3 days after my appointment I started having this horrible migraine. After a quick nap I felt much better. I figured it was just a fluke. However the next five days I kept on feeling pressure in my head. There was a voice in the back of my head that was like, "hmmm I wonder if this is what relapsing feels like." I pushed that voice away since I had just seen my oncologist, but I got a blood draw just in case on May 3rd. The results came back on Sunday when I was at Khanh's drive and I found out that there were 7% blast cells in my blood. This was alarming since normal healthy blast cells are suppose to only live in your marrow. The fact that it was in my blood stream was a sign that cancerous blast cells were overcrowding my marrow and getting pushed into my blood. Since my results came on a Sunday my oncologist was not working so I left a bunch of messages to him to figure out what these results mean. I went to bed praying that my results were a fluke.

My oncologist emailed me on Monday when I was at work and wrote

"Michelle,

It looks like relapse. Sorry. I'll have my office call you. I need to do a bone marrow ASPAP, today if possible Around 2:00 PM"

I cried on my director's shoulder and she walked me to my car. I met up with my boyfriend and sister who took me to get the biopsy done. Biopsy was painful as ever, but luckily they got a good sample. I also got an MRI so we can figure out what could be causing my headache.

Yesterday was a long day of waiting, but I didn't get the results until today. My last bit of hope that it wasn't a relapsed was crushed when the surgery appointment person called me to ask when I wanted to get my catheter placed. I rushed to call my oncologist's nurse who then paged my doctor so that he call me with the results. My doctor called 5 minutes later and told me the bad news.

Everything is happening so suddenly. Here we go again.....

Project Khanh

Van, Marshawn and I woke up early on Sunday to get to St. Patrick Proto Cathedral to help set up the drive. It was a cold gray morning and I was shivering as I walked towards the church, but the sight of Khanh standing in front of the church holding 20 gigantic balloon really warmed my heart. He eagerly greeted me with a big smile and his positive energy was contagious.

I couldn't believe Khanh was at the drive so early in the morning. He's on a regimen of chemo every 2 weeks until the doctors find him a suitable donor. I can recall how exhausted and weak I was a week after chemo and I could only imagine how tired he must be. Khanh did not show an ounce of fatigue as he spoke in front of hundreds of people to share his story. After his speech he immediately ran back to our tables so he could review forms, translate information and answer questions for the frantic and impatient crowds of people. His friendly and charming personality made it really easy for him to talk to strangers and convince people to register. Throughout the drive he kept on asking me how I was doing.

The drive was very successful with 93 new registrants -- 84 were Vietnamese who have higher chances of matching Khanh (or me). The success of the drive was due to Khanh and his energetic team of family and friends. I am praying that we will be able to find a match for Khanh.

I also met a Vietnamese Cal alumn that has a 21 year old sister (also at UC Berkeley) who was recently diagnosed with AML. She's taking the year off and getting treated at Stanford. I just can't believe so many young people are getting sick. And why does it seem to be happening to all the good people? Why, why, why????

Project Michelle registrant count is up to 2710!

Our efforts have brought in a total of 2710 new people on the bone marrow donor registry! My mom and Dr. Do have been doing a fantastic job publicizing the drives on the Vietnamese radio waves.

I hope to see many people register this Sunday at St. Maria Goretti Parish in San Jose (2980 Senter Rd). Van and I will be there bright and early to volunteer. It starts at 7:30am for the early birds going to church.