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.

DRIVE IT HOME

Please support Khanh!!! Bring your mom, dad, brothers, sisters, cousins, uncles, friends, acquaintances, colleagues, students, customers, etc to the drives. Time is of the essence. There will be drives this Sunday (St. Maria Goretti) and next Sunday (St. Patrick Proto Cathedral) to find Khanh and other patients like him a donor match. See the flyers for details.

The Itchy and Scratchy Show

Previously I mentioned that each cancer patient develops his/her own slew of unique complications from the chemo treatment. For example, some people get eye infections because the chemo seeps into the ducts in their eyes, others get pneumonias because their body can't fight off microorganisms invading their lungs and then there are folks like me that develop skin issues.

Our skin is the largest and heaviest organ in our body. Our skin not only gives us our appearance and shape, but it serves as our first line of defense to protect us from heat, cold, bacteria, viruses, fungi, etc. When your immune system is suppressed, your skin is not as effective in doing its job. Consequently, it is very easy for things to sneak their way into your body and wreak havoc. I developed two major skin infections during my chemo treatment that were extremely painful.

Well I figured since my counts are up now, my skin/immune system is back to normal working order. I've never had any skin problems up until I started chemotherapy, but I am soon learning that I may have to deal with skin issues for a little while longer. :(

Towards the end of my Spain trip in March I started getting small bumps on the right side of my face. I thought they were just zits, but I was suprised how many and how itchy they were. Plus it was weird that they were only on the right side of my face. When I came back to the states I made an appointment and found out that it was impetigo (the wikipedia picture is of a very severe case....mine is 100 times less ugly) caused by a common staph bacteria called staphylococcus aureus. Since we have learned that I am allergic to many to antibiotics the doctor could only give me an ointment. Luckily the bumps went away in a week.

However, I am sad to say that I think I have another breakout of these little suckers. Luckily they are not on my face, but unluckily they are in random patches all over my body (stomach, elbows, arms, etc.). It is soooo itchy. I have an appointment tomorrow to get it checked out. Hopefully we can nip this in the bud asap.

My sister's biology professor mentioned to her that even though my counts are normal it may take some time for my immune system to completely heal. These skin infections are little reminders that maybe I'm not as back to normal as I think I am. ARg.

Khanh Van Vo

Everytime I hear about a new young person in search of a bone marrow donor I just want to throw up my hands and scream "When does it ever end??!?"

Khanh Van Vo is only 22 years old. He is Vietnamese (like me) and was diagnosed with Lymphoproliferative Disorder, a very rare form of blood cancer, in December of 2007. He enjoys fishing, camping and snowboarding. He is currently searching for a donor.

My mom has been doing a weekly Vietnamese radio show about leukemia and bone marrow transplants and she's had the opportunity to work with Khanh's friends and family at a recent marrow drive. This past weekend many of Khanh's friends came out to get registered at the Starbucks drive my mom helped organize (Thanks Starbucks!). There is a big push in the Vietnamese community to get more people registered.

But we still need more help. Please get registered (and convince your friends and family to do it too).

Here are some upcoming drives targeting the Vietnamese community:

April 27, 2008 (Sunday)
St. Maria Goretti Church, San Jose
9-11 am & 3-5 pm

May 4, 2008 (Sunday)
St.Patrick Proto-Cathedral
7:30-10:30 am

birds of a feather, flock together

I've never been much of a blog writer or a blog reader. Ever since I got sick, however, one thing that keeps me inspired and motivated is reading up on other patients whom I found through the AADP website. I have learned a TON by reading their online journals. It makes me feel like I'm not alone. I feel like I am right by their side...smiling, screaming, throwing my hands up, crying and laughing with them as they go through their treatment. Their blogs give me a little window into their wonderful world of chemotherapy which is very different and yet similar to my own. The list of potential effects are the same....nausea, fatigue, hairloss, risk of infections, etc. It's pretty much guaranteed that we all lose our hair, but figuring out which infections or other complications we each develop seems to be the luck of the draw. There are so many types of infections/diseases to choose from when your immune system is suppressed.

The things that we do share in common are love, hope and perseverance.

I thought I'd share my favorites cancer warrior websites. (Some of these sites are old) Everyday I am amazed by how brave, honest, optimistic, intelligent, thoughtful, and amazing these people are.

• Ann Gregory
• Erica Murray
• Help Vinay
• Luke Do
• Match Pia

Reconnecting

One of the best things that have come out of Operation Kill Luke has been reconnecting with my extended family. Although my immediate family is super close, I am sad to say that we rarely keep in touch with our aunts, uncles and cousins. When I got sick, I didn't want to tell them I was sick. I just wasn't ready to share my situation with the world or even family members who barely knew me. I especially didn't want people's sympathy. I felt like if they really cared they would have contacted me before I got sick.

Anyways, my take on this has changed a lot. I really appreciate the fact that when sh*t hit my fan, many of my family members stepped up and supported me. I really admire their courage to reach out. If I was in their shoes I might have felt like it was too weird to reconnect. What do you say to a cousin you haven't seen over 10 years?

I want to take the time to thank a few family members who really touched me (in no particular order).

1. Auntie Diep and my cousin Chi Ha - They were bone marrow drive champions and volunteered at many of my bone marrow drives. They wouldn't take no for an answer and were very effective at getting people to register. Di Diep and Chi Ha have a lot of activities on their plates, but they dropped everything in a heartbeat to help me out.

2. Auntie Lieu and her family - My aunt Di Lieu cooked up a storm while I was in the hospital so I could always have a homecooked meal. Her kids (my cousin) even planned a special brunch so we could have a small reunion.

3. My cousin Marie - Marie lives in Miami and refused to let the distance get in her way of supporting me. She got weekly updates from my dad when I was too weak to talk. She sent me waaaay too many thoughtful gifts to make my treatment go a little more smoothly. She was by far my most persistent fan.

I am also very thankful to all of my other family that volunteered at drives and visited me in the hospital. It's nice to feel loved.

This past weekend I visited Marie, her husband David and their daughter Anna. They made me feel so welcomed and planned a fun filled weekend so I could get a taste of Miami. It was a blast. I can't wait to see them again. I am very grateful that my illness brought us closer together.

Back to the Grind

Life is slowly becoming "normal" again. I've been back at my job for 5 weeks now. It's been a smooth transition so far and I can't wait to get an assignment so I can see how well my brain is functioning. I know my spelling and grammar has deteriorated a bit. I wonder if it's the chemo brain or just me being rusty on the keyboard. Amen for spell checker though! I am working part time until the beginning of May. The four day weekends are fantastic, but go by really fast. :P

My colleagues have been so supportive through this whole ordeal. I can imagine how crappy it must be for someone that has to worry about work while going through chemo treatment. They welcomed me back with open arms and a special lunch.


I had a very relaxing time in Spain and I am itching to travel again. It was the most relaxing time I've ever had in Europe. The credit goes to my best friend, Ms. Optimistic Go with the Flow Yoshimoto. What would I do without her???? She always keeps me so grounded. Pictures of Barcelona are shown.

Shortly after my trip to Spain, I met Van's uncle who is a famous acupuncturist and he said that internal heat is bad for my health. He said "heat" stems from worrying, stressing or getting upset. I really felt like he knew me too well. What the heck am I going to do with my free time if I eliminate my 3 favorite past times???

Despite many lectures about stressing, the control freak in me creeps in from time to time especially now that I have a "normal" life again. Don't get me wrong, I think my stress levels are way down, but it's hard not to think (a.k.a. worry) about my career, personal finances, job assignments, my family, my dog, what if I relapse, etc, etc. Sometimes it amazes me how little I have changed. I guess it's not really in my nature to do a 180, but I just wonder how people can cut the stress out of their lives.

On another note, I have started taking bikram yoga classes with Mabel and Van. I love the feeling I get after sweating like a dog for 90 minutes. Its so liberating, cleansing and calming. Hmmm perhaps I should become a yogi....nope that wouldn't work because my students would frustrate me if they couldn't do the position correctly. See?? Michelle has major issues.

Help Baby Stephen

When it rains.... We just found out that Van's co-worker's friend has a 16-month old baby boy in need of a bone marrow transplant. Stephen was only 6 months old in May 2007 when he was diagnosed with a disease called Hyper IGM CD40 Ligand. It is a primary immune deficiency where his immune system does not communicate properly and does not produce the Immunoglobulins he needs to fight off illnesses. A successful bone marrow transplant will cure him of the disease and give him a new healthy immune system. However, he is still looking for a perfect bone marrow donor match.

Stephen is of Caucasian descent so normally there is a $52 processing fee to get registered if you are Caucasian. To work around this, Stephen's parents are hosting a blood drive in Los Altos where you can also register to become a bone marrow donor for free during your blood donation. It's a Good Karma 2 for 1 Combo Pack. Donating blood and registering your bone marrow all in one sitting. See details below. Please help spread the word for little Stephen.

Unfortunately they are somewhat limited on the number of appointments available, so for those who are interested in becoming a part of the registry please sign up early. You can always check out the National Marrow Donor Program for upcoming bone marrow drives near your area.

Stephen's Drive
Saturday, April 5, 2008
10:00am-2:00pm

St. Simon Church
1860 Grant Road
Los Altos, 94024

To make an appointment please follow these steps:

Log onto www.bloodcenter.stanford.edu
Click on Find a Blood drive
Click on Los Altos
Click on Stephen Dorcich Blood Drive
Fill out the information requested and proceed through the site until
you click confirm

Let's keep Stephen in our thoughts and prayers and send him positive energy and love.

I'm coming out, I want to world to know, Got to let it show

I got my Groshong taken out!!!!

The Diana Ross song keeps on playing in my head whenever I think about my Groshong catheter. I'm pretty bruised, but I feel so free. I even got teary eyed during my first normal shower. It's the little things that you miss the most.

So I'll quickly explain how it went down. I got to the surgery clinic and the nurse escorted me into my room. She was explaining how they were going to make an incision and I would need stitches. I said, "STITCHES?!? Can't you just pull the sucker out of the hole that's already there? Why do you need to make an incision?" The nurse reassured me that it was going to be a tiny incision and would only require a few stitches. Butterflies in my tummy started doing flips at this point. (Plus I read the Lance Armstrong book and he had a horrible experience with his Groshong removal.) Turns out I was mistakenly scheduled for a port-a-cath removal which is a different line that is placed beneath your skin. Luckily that got cleared up as soon as the surgeon took one look at my Groshong.

I laid on the bed as the surgeon gave me shots of local anesthesia so the area would be numb. It felt like I was getting stung by tiny bees.

The surgeon felt around to see how far the "cuff" was in my vein and she said that she could feel it close to the exit site. The cuff is basically a donut-like stopper around a part of the tube that's underneath my skin. The cuff ensures that the tube doesn't accidentally slip out of the incision point on my chest. Since I had the tube for almost a whole year the surgeon suspected that my tissue fibers had attached themselves to the tube. She said this might make it hard to pull the tube out. That was an understatement.

She removed the stitches and then started to tug on the tube. For some people, all it takes is a tug and the tube slips out. For Michelle Maykin, the surgeon had to yank, yank, YANK. She even made the incision point wider with a scalpel a few times. I felt like I was fish on a hook because every time she pulled the tube my whole body was lifted from the table. Luckily I felt very little pain, but it seemed like it was taking forever with no progress. That sucker would not budge. Midway through, I even asked the nurse to hold my hand because it was freaking me out a little bit. After 10+ tries the cuff finally came out and the rest of the tube slipped out easily.

It was a pretty surreal experience to be awake while the procedure was taking place. If I had to do that again (knock on wood)...I would definitely opt for more drugs so I'm not as alert. Boy am I glad it's over. Now I have just a few war wounds (scars) that remind me of my battle with Leuk instead of an entire foot long tube dangling out of my chest. I feel so free.... fantastically liberating.


I asked the surgeon if I could keep the tube, but she said that I couldn't have it because it was deemed "hazardous." I thought, "Um..hello?? It's been in my chest for the last year...if it hasn't harmed me yet...I doubt it could be hazardous to me now." She still didn't want to give it to me but she gave me a consolation prize by letting me take a picture of it with my camera phone. The red blob is the cuff. The end of the tube to the cuff is the part that was inside my vein. From the cuff to the two blue caps is the part that was outside of my chest.

Hopeful

Last week I got an email from Chi Hang that she has found a cord blood match and will be receiving a bone marrow transplant soon. Such great news!!!!

Chi Hang has been doing weekly Vietnamese radio talk shows with my mom to share her story and educate people about leukemia, the marrow registry and bone marrow transplants. Unfortunately she does not have the luxury of leaving the hospital to go on air so she does the interviews in her hospital room. You can even hear the chemo machines that she's connected to beeping in the background. She is an inspiration to me.

The road ahead will be very challenging for Chi Hang, but I am optimistic that she will fight through it with the support of her loving family and friends. I will try to keep everyone posted on her treatment.

Chi Hang, you will be in my thoughts and prayers.

Final Dressing Change and Blood Draw

I get the bandages on my Groshong catheter changed once a week to prevent infections. Even though it's been almost a year since the tube was first put in, the area still stings when the nurses use alcohol swabs to clean it. There are stitches that keep the tube in place which means the area still feels like an open wound.

(For patients reading this, I've learned that some hospitals, e.g. SF Kaiser, take out the stitches a few weeks after the catheter is placed, but other hospitals, e.g. Walnut Creek Kaiser, prefer to leave the stitches in until the catheter is removed. SF says that the stitches increase the risk of bacterial infections. WC says that the stitches ensure that the tube doesn't slip out. I opted to keep the stitches in even though the SF nurses have asked me numerous times to take the stitches out. I figure that I should just stick to the protocol at Walnut Creek since that's where I received chemo treatment. Geez, wouldn't it be nice if all of these Kaiser hospitals had the same protocols and procedures??)

I used to hate dressing changes because it would hurt when the bandages were being pulled off, but I'm used to it now and I usually peel off the bandages myself (it hurts less when you do it yourself). It still creeps me out to look at the tube dangling from my chest when the bandages are removed, but I've definitely gotten use to the sight.

I had my very last dressing change last Wednesday and I also got a blood test done just to make sure everything is normal because tomorrow I have an appointment with Surgery to remove the catheter. My white blood cells are going up to normal levels now (4.5 to be exact). I am very excited because it feels like the Groshong removal is the final part of my treatment.

The nurses at all of the infusion clinics (Walnut Creek, Martinez, San Francisco, and Fremont) have been so sweet, supportive, and accomodating. They always manage to squeeze me into their busy schedule. I'm going to miss coming to them for my weekly blood draws. Once I get the catheter removed I'll go to the injection clinic to get blood draws through my arms once a month. Unfortunately, I have small veins so they might have to prick me multiple times, but I think it's a fair price to pay to be able to take a regular shower and hit the pool again. Woo hoo!

Match Maykin

If you have been following my journey you will know that I am currently not a candidate for a bone marrow transplant because I have a "favorable" Leukemia type - Subtype M2 with a 8:21 translocation. (The word "favorable" never sounds right to me...how can any cancer be favorable??? :P) The Stanford University bone marrow transplant doctor said that I have a 50% chance that I will be cured with chemotherapy alone. The doctors say that 50% cure rate is pretty good.

Since I am not a candidate for a BMT the only way I can see if I have a match is to use a tool on the National Marrow Donor Program website to do a preliminary search. It is not the most accurate information, but it gives patients a good idea of what's currently in the database. Normally doctors will look at 10 HLA markers, but the website only searches 6 markers. (The more markers that match, the less likely your body will reject the transplant.)

Here are my results for today:

NMDP Registry Potential Adult Donors:

* Potential matches at 6 of 6 HLA markers: 0
* Potential matches at 5 of 6 HLA markers: 497

NMDP Registry Potential Cord Blood Units:

* Potential matches at 6 of 6 HLA markers: 0
* Potential matches at 5 of 6 HLA markers: 5
* Potential matches at 4 of 6 HLA markers: 169

As you can see, I don't have an exact match on the US registry. However, when I started using this tool, I only had 460 matches with 5 of 6 markers.....so it's nice to see that the database has gotten bigger and now there are 497 people that match 5 out of 6 markers. (Some patients will get a transplant from a 5 of 6 match when the doctors are desperate and there is not much time left). The cord blood registry is made up of people who have donated their babies umbilical cord blood. There are stem cells in the cord that is normally discarded after the delivery. Many patients who do not have a donor match will get a transplant using umbilical cord.

Pretty interesting stuff huh? I can't imagine what it will be like when I do a search and see that I have a 6 of 6 potential match. Can't wait for the day. Cross your fingers!

How'd you catch Leukemia?

I do not blame myself for getting Leukemia. I am one of the healthiest people I know. I don't smoke, drink, use drugs or do anything that would put me at risk for getting cancer. I rarely eat fast food. I'm not a fan of fatty steaks. I like my vegetables and fruits. I take my daily vitamins.

I guess if I look at all of my friends and family, it's probably best that I was the lucky one that caught the L-bug because my body is in great shape to handle the beast that is chemotherapy.

So it's always funny/frustrating to me when people lecture me on how I got Leukemia. Here's a few things that I've heard:
1. You spend too much time in front of your laptop at work and the computer waves mutated your stem cells.
2. You stress too much.
3. You lived near a refinery when you were growing up.
4. You went to Tahoe and it was too cold which caused your body to produce cancer.
5. You don't eat enough beets.

I'm sure other patients hear possible causes like these too, but I hope no one internalizes them. That would really suck if I started feeling like it was my fault and I could have prevented this from happening to me. The way I've come to accept Leukemia is that it just occurred randomly. One poor stem cell got confused on how to make a normal blood cell. It made a mistake and started making cancer cells because it read the instructions wrong. That teeny tiny mistake led to my debacle of 2007. That pretty much sums it up for me. I am not going to beat myself up over how this happened.

Anthony has left us

Anthony was a very sweet 24 year old. He was a wonderful son (mom said he never ever caused her any grief whatsoever) and a caring older brother. He met the love of his life, Carol An, just a month before he was diagnosed with Acute Myeloid Leukemia in June. With his family and girlfriend by his side, Anthony went into his chemo treatment with courage, bravery and hope.

He had a great voice and loved to sing. Unfortunately, by the time I met Anthony he was too weak to sing a song. (I first met him after Carol An found my website and sent an email to me in November.) Whenever he was awake in his hospital room he would put on a cheerful face and his eyes would twinkle. He would joke with his girlfriend and tease his nurses. Anthony was even apologetic when he would wake up from a nap to discover visitors in his room - as if he should entertain his guests even in his dire state. He never showed any fear to me despite the fact that he was under an enormous amount of pain.

I can't believe Anthony is gone. He was diagnosed less than 8 months ago. There is no rhyme or reason why some people make it and others don't. This is a situation where that cliche old saying "Life isn't fair" comes to mind.

I am only comforted by the fact that he is no longer suffering. He was a good person through and through and his life was taken away from him much too soon.

She will exhale

A3M has chosen me to be the focus patient for their new "Be the One" campaign. Here are a few professional photos taken of Marshawn and me for their media. He's totally stealing my spotlight, but isn't he just the cutest puppy ever? I am such a proud parent. :P

I had my bone marrow biopsy on Wednesday. Thanks pops for letting me squeeze your hand until my fingers went numb. The biopsy was a little more painful than the other 3 times. I have strong bones which is a good thing for osteoporosis, but a challenge for biopsies because it's hard to get inside of the bone to extract the marrow. (Have no fear potential marrow donors, you will be given general anesthesia when you donate so you won't feel, hear or see a thing.) I'll post more about biopsies later.

This entry is actually to celebrate fantastic news. My doctor emailed me today and said "The flow was negative for malignant cells. Congratulations!" What this means is that the sample of marrow that they took from me tested negative for cancer cells. They put my sample under a special fluorescent light machine to identify the various cells and see if there are any cancer cells. There was not a single cancer cell in my marrow.

Next week a pathologist will examine my sample to run other tests to confirm that I am cancer-free. My oncologist says that he's very confident that those results will come back negative as well.

I am so darn happy. My friends and family are always saying, "Don't worry, we know the cancer is gone. You are fine." However, I felt like I was in a holding pattern until my biopsy results finally confirmed the good news. And now I feel soooo relieved. I feel like this big weight has been lifted from my chest and I can start moving on. Seriously, if it weren't raining so hard outside, I would do a jig in the middle of the street.

Right after I got my doctor's email. I scheduled a 10-day trip to Spain with my best friends for the end of February. I called my wonderful manager and Human Resources to confirm my return to work date (around March 10th). And I'm waiting for my doctor's response to figure out when I can get a surgeon to remove my groshong catheter. (Who wants to go rock climbing with me when I get this thing out???)

However, this doesn't change my determination to find a potential match for me and other patients. I know that I could relapse at any given minute and I am not going to take this 2nd chance for granted. I want to make a difference. I am determined to set up more successful drives and to reach out to communities we have not worked with in the past.

Thanks a million to all of your prayers and warm wishes. I couldn't have done it without all of your support. We did it!!!!!!!!!!!!!

A letter from a Volunteer

Elise (aka Hoang Cuc) came to the Chua An Lac drive to volunteer and help Chi Hang's search. Elise went to UCLA with Chi Hang's husband, Anh Tai. Co Elise was a breathe of fresh air. She was motivated, energetic, sweet, caring and friendly. She spent the entire day with us and was fantastic at walking people through the process and convincing them to register. Here is her summary of the event. Great letter...I couldn't have said it better myself.

Hi Friends, Phat duong dieu dat do tu bi Tuy la. khong quen van kiem tim Tram huong phong toa long nhan ai Goi ghem tu tam duom chut tinh.... It was a warm, beautiful day here in San Jose. The sun radiated such warmth and kindness from above. The smell of incense burning at the outside altar, from the temple's courtyard filled our hearts with love and hopes of life for Hang, Vinh, Michelle. Today's marrow drive (01/13/2008) for Hang, Vinh, Michelle was another successful event at Chua An Lac, San Jose. I arrived at the temple at about 11:00 am. Today, quite a crowd of people gathered at the temple just for the event, just to register to be tested as donors for Hang/Vinh/Michelle. We didn't have to chase after anyone to convince or twist their arms. I admit.. Yesterday, when I drove around the area looking for Chua An Lac, I was a bit worried since I noticed that the temple was situated in a residential area. Today, I was amazed at such a great turnout! We registered about 101, or 102 persons from 10:30 am to 3:00 pm, maybe the count was even higher. To be exact, will have to get the final number from Glenna/Jenny of AADP org. Toward the end, after we closed down everything, after cleared the tables, there were still people driving into the courtyard. Today's event could not have been a success without the help of many... many people, of Su Ba who blessed this drive at the temple, especially the dedication of chi Hoang Mong Thu who poured her heart out pledging for Hang/Vinh/Michelle on local VN radio, of the help from AADP, of Michelle & her friend, of the volunteers who showed up just to lend helping hands... It was great to see Michelle so pretty and cute, in her raven black short hair. After 5 rounds of chemo, Michelle is now well on her way toward wellness.

Today, I experienced many, many touching moments... A couple of caucasian women in the late 40's, 50's showed up to register, such hearts of gold they have! I asked one of the lady how did she hear of the marrow drive. She told me she found out from the internet and just came out to register. Few weeks ago, she even droved up to the Berkeley temple but got lost or somehow couldn't find it... There was one handicapped and blind Viet man who could barely walk on his own, he came just from hearing chi Mong Thu's pledge on radio. There were people who came to register because their loved ones passed away with Leukemia, or their family member is currently diagnosed with this disease and they are seeking for support. Today, I learned there are so many other Vietnamese people of similar plight but are afraid to reach out to the community for help. Tai, there was this Vietnamese man (anh Hung Vo) who came to register for test. He heard from Michelle that I know Hang and handed me a $100 bill, asked me to please send his money to Hang. This was what he said to me: "I only work as car-body shop repairman but I feel for their situation..." There was this elderly man who specifically asked to register for Hang only! There was this mother who took her 2 children along to register (alas... too bad her children were both under 18, she probably missed the information about the requirement for test).... etc ... All in all, I was so touched by the many hearts of gold I met at the marrow drive today.... Tai, Hang oi, please hang in there, please know that over here in San Jose, there are lot...lot...lots of people who are touched, who feel the pain and suffering that you both are experiencing! These were some of their sincere words: "Minh khong biet giup duoc gi, nhung thay tinh canh co ta ma thay thuong qua!" It is even more heart-felt when the words come from the people who barely know this couple residing on the other side of the country. Tai, the people I met today conveyed to you both their well-wishing. Please send Hang their hope & love to fuel Hang with higher mental strength in her fight for cure. Thank You Michelle, cam on chi Mong Thu da tan tinh het suc giup do and everyone who participated at today's event. Definitely, Tai/Hang, our SoCal UCLA friends will appreciate all the help they received from the volunteers/testers/all who came out to today's marrow drive. Please accept my apology if I omit anyone... Cam on Su Ba, ong Ngo Sy Hung who came for support, Jenny Tran/Glenna from AADP org, Michelle and her friend who administered the cheeks cells test step, Vu - another volunteer I met there who showed up just from listening to chi. Hoang Mong Thu's pledge on radio, my friends Van, Lieu and all the registered testers. Please help forward this email to anyone I miss. You can view pix of today's marrow drive at: http://imageevent.com/mitonu/marrowdrivesj0113chuaanlac?z=3&l=0&c=3&n=1&m=16&w=4&x=0&p=31

P.S. Tai, please email me your home address so can forward you anh Hung Vo's monetary help. I did take his address. To help you with the load, I will send him a thank-you card on your behalf, don't worry. Will send you his details... P.P.S. To the Bay Area residents, Chi Mong Thu will inform when the next marrow drive will be. If you miss today's event, there is still time to help. Please come out to support at the next drive, scheduled to be at Lion's plaza, either 1 week before Vietnamese Tet.. or will let you know.... -Hoang Cuc

Drive On

We had a very successful drive at Chua An Lac. Got 92 people to register. Our count is now up to 2198 people registered through Project Michelle drives. Thank you very much to everyone who came to the Vietnamese temple to sign up. Special thanks to my supermom, Co Hang, Cali Today, radio station 1120 and everyone else who helped publicize the drive. I was hoping to get at least 20 people, so 92 was a pleasant surprise.

This has been a very tough week. Co Tam's funeral and the news about other leukemia fighters not doing so well saddens and frustrates me. However, today's drive cheered me up a bit. I could tell that everyone who came to the drive really wanted to help. There was no struggle to get their contact information and they waited patiently to receive their swab test kits. I was touched when parents even brought their teenage children to the drive to get them registered (unfortunately you have to be 18). I wish more drives were like the one today.

We are trying to take control of this dire situation and the response today was amazing. People are taking action and doing their part to help save someone's life. I am so proud to be a part of this initiative.

Do you think you are invincible?

My good friend asked me this question last week. I immediately responded "no" but the question struck a chord inside of me and I've been thinking about it for the past couple of days.

Who doesn't believe that he/she is invincible? I don't mean that we all think that we are superhuman, but doesn't everyone (except for hypochondriacs) have that, "it's never going to happen to me" mentality? We snowboard without helmets, buy the cheapest medical insurance with the least amount of coverage and drive above the speed limit because our optimistic nature makes us believe that life is going to deal us a decent hand.

Well, it did happen to me and suprisingly, I still feel like it's not going to happen to me (again). I know that I have a 50% chance that I'm going to relapse, but surprisingly it hasn't paralyzed me. Am I just being naive and foolish??

Being Michelle Maykin

A nice Vietnamese gentleman from Ottawa, Canada contacted Project Michelle and has been helping with bone marrow drives in our neighbor up north. Periodically, he emails me greeting cards and messages to cheer me up. A few months ago he asked me to write about my feelings. I honestly didn't know what to say, but I want to take a stab at it now.

Thank you very much Chu Sam for always keeping me in your thoughts.

Love,
Michelle

Hi Michelle: If you can and care to share, how about some of your thoughts on: 1. What it is to you and for you to get leukemia 2. What's really going on in your mind, besides things you do with friends and others (forgive me if this may sound intrusive. I just know that one cannot run away from certain realities...) 3. Family and friends (+ strangers): what and how the situation affects them 4. What's your fondest desire 5. What would you do, if you can do something to help another victim, being a victim yourself
This may just be simple entries in your diary. But they may be quite powerful in sensitizing the issue and getting people to help... coming from you.
If you think this is not a bad idea, then give it some thoughts...
Take care and have a pleasant weekend.
Sam

When it rains it pours...

Sometimes it feels like Leukemia is some kind of bug that is going around. I swear during my first week in the hospital it felt like everytime I turned on the tv I would see a new story about a young girl relapsing, a recent college grad in a clinical trial, or a father of 2 looking for a donor. I know my ears are hyper sensitive to the L-word, but I just wonder how come so many young people are being diagnosed with this disease that is mainly suppose to infect the elderly.

Through this website I have been contacted by 2 families that are also looking for bone marrow donors. Unfortunately, both patients have relapsed after just a few rounds of chemotherapy. Their doctors are trying to use very potent chemo to get them back into remission, but only a bone marrow transplant will cure them. It makes me very happy that I can help them directly by providing them with the information that I have learned along the way during my own treatment.

Maykin Lifestyle Changes for 2008

Here's to a great 2008!!! I got a new hairdo, new puppy, new navigation system (no more getting lost to bone marrow drives - thx mom & bro) and new stem cells (not from a transplant, just made from my own body). What more could a girl ask for?

There's nothing else that I want, but there are a few things that I'd like to work on personally. I know there are many cancer survivors out there that do complete transformations (for the better) after their treatment is over. Some go on hardcore vegan wheat grass diets and do triathalons while others become more spiritual and give up smoking and swearing. I totally admire people like that because it shows passion, determination, dedication, motivation, etc. Most importantly, it shows that some good can come out of this evil cancer thing. My doctor says a lot of patients are very grateful that they got cancer because it changed their lives. To be honest, I'm on the fence about this for myself.

As for me, I still struggle with the same issues and demons that I had before getting sick. Now that my daily treatment is over and I'm leading a more "normal" life, I realize I am picking up exactly where I left off. I still procrastinate. I still don't know what I want to do with the rest of my life. I still get moody and catty. I am still frugal and competitive. I still eat ice cream. I still forget to drink my green tea (and other foods rich in antioxidants). And I still forget to wash my face most nights. I'm the same. No better, no worse.

I'm okay with this because I liked who I was before all of this craziness began. I wasn't perfect, but I don't think I was that bad either. The only difference is now (based on real life experience) I know that I can handle some real tough sh*t and I am not a whimp. With that said, I say bring it on 2008!

I am going to approach the new year with the same mindset I have every year... a focus on being a better person.

Yesterday my best friend Mabel said she thought the word "resolution" sounded fickle and temporary. I completely agree. Plus I've never been successful with my new year's resolutions. Perhaps calling them something else will make me more committed. Mabel suggested that we call them "lifestyle changes" instead. Here are mine in no particular order. I figure posting them on projectmichelle will make me feel obligated to try to stick to them.

1. Stress less - Don't worry so much about every little detail.
2. Stop being a control freak - Let go. Ask others for help. Let things happen naturally.
3. Don't beat yourself up - Stop comparing yourself to others. Focus on the positives and remind yourself that you are not a loser.
4. Take a break - Spend at least 15 minutes just breathing.
5. Don't let people get to you - They are not me and I am not them. Put yourself in their shoes - if you still don't understand, just walk away. Also refer to #2 above and accept and love them for who they are.
6. Eat more vegetables and exercise more (once I get my catheter out).
7. Try to be more punctual. Allot more time to getting ready so that you aren't rushing at the last minute.
8. Show (don't just tell) the people you care about that you are appreciate them.
9. Live in the present moment. *This must be done conjunction with #1.