We always say there are thousands of other patients like Michelle looking for donor every day. Well, meet Krissy, who has been diagnosed with Myleodysplastic Syndrome. Krissy has a primary bone marrow failure in which her marrow is not producing the healthy cells it needs to be. Krissy is also 26 years old. From her bio, “some would say that Krissy has a spunky spirit. She may be small in stature, but has a big personality.” Hmmm…sounds like someone else I know.

Krissy’s family and friends have set up Team Krissy and been working their tails off setting up drives just like everyone on the Project Michelle team. And like Michelle, Krissy is of mixed descent (Krissy is half Japanese and half Caucasian), so finding a match will be more difficult for her as well. If you know of anyone of Caucasian/Asian descent that has not registered, please ask them to register.

For those of you that are stumbling upon our site and just learning about Michelle and the need for donors on the registry, know that Project Michelle is not just about Michelle. You could save Michelle, Krissy, or another patient looking for their match. YOU may be their only match and their only chance to live. Please register.

Krissy

I am usually pretty out of it after the first day of chemo, so I figured my energy would come back on Day 2. Instead of energy, I was greeted on Day 2 with a low grade fever and a slightly elevated heart rate (95 - average is usually between 60 to 80 beats per minute). My chest was really tight and it hurt to take in a deep breath which I had never felt before. However, since I’ve had low grade fevers and rashes in the past from the Cytarabine (the “C” in my MEC chemo regimen), my doctor and I weren’t that alarmed. He figured that the chest pains were due to the elevated heart beat which was due to the fever. So he administered my 6th intrathecal chemo (final one hooray) and on Wednesday night, I took some Tylenol and the nurses went on their merry way administering the 3rd and last dose of MEC.

Thursday morning (the day I was hoping to check out of Kaiser), I felt like I had come down with the flu. I was achy all over, my head hurt, I felt nauseous, I had the chills and it really hurt when I tried to expand my lungs. My fever spiked to 102.3 and my heart was racing at 135 bpm. My oncologist ordered lung x-rays, EKG, and blood cultures to try to figure out what was wrong. Luckily everything came back negative. My blood counts were still normal (they don’t start to drop until a few days after chemo) so he didn’t think it was an infection. My oncologist was still certain that all of this was due to a reaction to the chemo (even though I didn’t have a skin rash like I had during previous rounds). He said even though I felt terrible, I didn’t look like a sick person which was a good sign to him. He warned me that I would probably stay in the hospital for the next couple of days.

All the while I just laid in fetal position moaning and shivering. I think I mentally screamed “Mercy!” in my head like a thousand times on Thursday, but relentless Chemo refused to let go. It quickly applied more and more pressure against my metaphorical wrists until I thought my spirit was going to break. Actually I’m pretty sure my spirit took a big fat beating, but thankfully I had Mabel, my mom and Van to comfort me, put ice packs on my head, and force me to drink plenty of liquids. As I complained to Mabel she reassured me that the pain was going to pass. I kept on looking at the wall clock, but the day passed like molasses. It felt like it was never going to end and neither was my pain. But the day did end and with it went my fever and pain.

Like Van said, Friday morning I woke up feeling “A thousand times better.” My doctor came in, took one look at me, and got the papers ready to discharge me out of the hospital by 1pm. Free bird again (well not totally free…but my cage is much more comfortable at home) Woo hoo!

I’m still in shock at how quickly I rebounded. I truly believe I let chemo beat me this time because I went into this round with dread. I didn’t want to go through it and consequently my body rejected the chemo more severely than ever before. Even as I type this, the thought of the blue chemo (see Van’s picture in previous blog) makes me sick to my stomach. This has never happened before! I guess I’ve developed a very strong aversion to the thought of this blue chemo or chemo in general. Isn’t it amazing how the mind and body work together?? I’m glad I have a little bit of time before round 4 to rid myself of this mental blockage (and find a donor of course). Any tips?

Mitoxantrone - the “M” in MEC

Yesterday, Michelle got a visit from Young, a friend she has known since freshman year at Berkeley. Below are some of his thoughts from the visit.

–

From Young:

Yesterday was my first visit to Michelle at the hospital. Generally, I’ve been seeing her when she is well enough to be at home.

In her room, Mabel, Michelle and I were just chatting it up when unexpectedly, her doctor came in and said it was time for the her last round of intrathecal chemo (the one that goes through the spine). Whoaaa, I thought. Immediately, I started feeling nervous to know that I’ll be witnessing this, and then my attention went to Michelle, curious about what she was experiencing at that moment as well. “You’d better hold Mabel’s hand because she freaks out,” said Michelle, who continues to think of others even in her hardest times.

As the doctor prepared his kit and as the nurse prepared Michelle in the right position, I had to prepare myself. Be with her and relax, I told myself. This was followed by the Doctor saying, “Don’t faint because nobody will be able to catch you.”

The most scary moment for me was when the Doctor had to delicately poke a 4-inch needle into the middle of Michelle’s back, which was already doused in layers of iodine and prepped with anesthesia. After about 2 attempts, Michelle spoke about an instant sharp pain locally. I felt my mouth spread wide in concern. After more attempts, I observed his frustration as his head shook left to right. This part seemed to go on forever, even though it took about 8 minutes. Each time I noticed the needle coming out, I’d felt disheartened and scared for Michelle. I would even notice her toes curl with each insertion.

The most vivid moment was when the Doctor switched out the tube extracting her spinal fluid for the tube with chemo. In that brief switch, Michelle’s clear, spinal fluid leaked. As I reflect on this moment now, for some reason, it deeply connects me to how serious her condition really is. After the procedure, she asked “I felt some hot stuff on my back. What was that?” I said “um, your spinal fluid.”

The suspense and tension cleared when the Doctor said, “We’re all done.” A round of high fives were exchanged because this would be Michelle’s last intrathecal. I felt extremely honored to be able to witness just a sliver of what she’s been going through. Just a sliver.

Now, more than ever, she needs our support to find a match. We have a mega UC Berkeley drive coming up on Sept 17-18. Please contact here (savemichelle@gmail.com) if you would like to get involved.

–

This photo was taken a couple of weeks before Michelle’s original diagnosis in February 2007.

Michelle, Van, and Young Biking in Tiburon

We registered 191 potential donors, and we couldn’t have done this without AADP and all the Project Michelle volunteers that came out to recruit more donors.

Michelle was able to meet Coach Tedford and many players, who were all very eager to help. After registering, one player said “make sure you call me. I really want to donate.” This enthusiasm was infectious as many fans walked over to learn more and register after seeing the players’ support of Project Michelle. Here are some pictures from the drive (with more to come later).

Here are a few articles about the drive:

• – OAKLAND TRIBUNE: Desperate Search for Gift of Life
• – ALAMEDA STAR: Marrow and Stem Cell Drive During Cal Football’s Fan Appreciation Day
• – CONTRA COSTA TIMES: Our Neighbors
• – CAL BEARS.com: Join the Golden Bears in Supporting Cal Fan

Thank you everyone. Go Bears!

This past week my white blood cell counts finally came back to normal levels (4.5). Consequently, I am getting admitted into the hospital for round 3 on Monday to keep leukemia away while we continue to wait for a donor. I will receive 3 doses of MEC chemo over 3 days. If all goes well, I am hoping to get released on day 4.

This is the first time I am dreading chemo. I usually looked forward to getting admitted because it meant I was one step closer to completing my treatment plan. Going into this next round with no donor in sight is nerve wrecking. I don’t know how many more rounds of this my body can take. And with some patients, the chemo stops being effective. This is one of my worst fears. I feel like we are in limbo. My oncologist (who’s quite spiritual) always reassures me that my karma is too good to not find a match. The universe wouldn’t be that unfair. I sure hope he’s right.

Every morning I wake up with a bit of anxiety. Questions and fears running around in my head can keep me paralyzed in bed for hours. However, I am learning that the best way to squash these gremlins is to think about all of the hard work family, friends, colleagues, classmates, and even strangers have put into Project Michelle. My eyes well up every time I think about the countless hours you have dedicated to registration drives, meetings, publicity, contacting the media, the website, t-shirts, etc, etc. YOU are the ones that give me the strength to face each new day with faith, courage and hope. I am so grateful. Thank you.

On a lighter note, here’s something else that keeps me going, my little poopster. Here’s some of his other tricks. Hopefully, he’ll perform some of these at the Cal drive tomorrow.

We also met an amazing and inspirational woman named Gina Cousineau. Her son Evan was diagnosed with adrenoleukodystrophy, a horrific genetic metabolic disease, in April 2007. He underwent a cord blood transplant but developed a virus that in combination with his severely compromised immune system was too much even for this strong boy. Evan passed away on November 2, 2007, the day before his and his twin sister’s 10th birthday. Through Evan’s journey, Evan’s family and friends started a campaign of “Saving Lives in Honor of Evan”. Gina has felt the heartache of losing her son and will fight for the rest of her life to relieve others from this. To find out more about how you can make a difference and save lives (not just through marrow registration but also by donating blood and becoming an organ donor), keep reading the daily journals on her site and check out Evan’s Website.

Some interesting things I learned on Tuesday from Gina…

Did you know that only 5% of eligible Americans donate blood? Eligible donors can donate blood every 56 days. Since your blood donation is separated into its components: red blood cells, platelets and plasma, you can help save the lives of 3 people every two months.

Did you know that you can donate platelets every two weeks? Donating platelets involves a process called apheresis, where whole blood is separated into components, and the platelets are removed, while you relax, watch TV or read. You don’t lose any blood and your platelets are replenished in about 48 hours. The entire process takes about two hours. That means that you have the opportunity to save the life of a patient every two weeks.

So why is this important or relevant? Because Michelle is often the patient that needs blood transfusions and platelets to keep her alive when her counts are low. Michelle typically gets two blood transfusions and two platelet transfusions after every round of chemo. It’s so funny that I dedicate every day to getting new people to say they will donate marrow to save Michelle’s life. I forgot that countless strangers have already saved Michelle’s life so many times. I am thankful for those people who took the time out of their busy days to make a valuable impact on a stranger’s life because that stranger is the love of my life.

I am now pledging to make saving lives through blood/platelet transfusion part of the routine of my life. There is no reason for me not to.

Michelle and our new friend Gina:

The Cal football team, including Coach Tedford, will be signing up for the registry! We’ll also be registering fans (FREE for everyone, including caucasians) from 10:15am to 2pm. Festivities will run from 12-2 p.m., with a pre-event starting at 11 a.m. by the North Tunnel. Please tell your family and friends to come register and support Project Michelle and the Golden Bears at Fan Appreciation Day.

More details HERE:

The athletic department is expecting a large audience so if you can come out and help volunteer, we could really use your help. Please contact us here savemichelle@gmail.com.

GO BEARS!!!

If you’re going to their concert, make sure to find the registration tables and sign up as a donor!! For more information on the International Secret Agents Concert on Sept. 7th, please visit here.

Never having anything larger than a dwarf hamster under my care, I didn’t understand the intense bonds people formed with their dogs…until Van and Michelle got Marshawn. “Marty” (as we’ve lovingly come to know him) is a tiny furry bundle of hyperness mixed with an occasional sprinkling of mischief.

Marty’s positive effects on everyone’s lives is undeniable, particularly the impact he has on Michelle’s mood. Science aside, it’s really touching to see how easily Marty can draw a smile out of his proud mom–even within seconds of peeing in places he shouldn’t. The little 4 pound sucker has a powerful arsenal of cuteness stored behind his beady little eyes.

As Michelle continues to get her weekly doses of intrathecal chemo, it makes me happy to know that Marty is around to distract her from the nasty side effects of treatment. This blog post is my little tribute to the tiny yorkie that has brought everyone so much joy (and has NOT peed in my bedroom…yet). Way to go, Marshawn Maykin.

Update: Michelle says “enjoy the Marshawn show”

As we head into another weekend of drives, we know that every drive makes a difference. Each person you are able to stop from walking away and convince to register could be a life-saving donor. As much as Michelle wants a donor that matches her, she more often prays that each weekend just turns up a donor for someone…anyone. Michelle is not alone in her fight and you guys are out there doing something about it.

We know it’s been a long road and although we still haven’t found a donor yet, Michelle hasn’t given up. A big reason for her continued strength is the inspiration and encouragement she gets from the hundreds of volunteers out there still pushing and rooting for her. We are so thankful for ever single one of you.

I’ll end this post by wishing everyone a good weekend and posting this video made by one of our volunteers. Enjoy.

Hang Nguyen, 33 years old, passed away on Saturday. She received a cord blood transplant at the end of March and was released from the hospital at the beginning of June. Shortly afterwards, she relapsed that same month. I am very sad that cancer has taken her away from us especially from her dear husband Tai and her two little boys Thang and Dat. She was such a loving mother and wife. I can’t believe how quickly she was taken. I don’t normally think about what’s fair when I think about my own cancer, but Chi Hang passing away is truly unfair. She has two young boys who still need her. She had so much to live for. Cancer is so cruel.

When Chi Hang found out that I had relapsed she was very sad and concerned. She sent me a sweet email with words of encouragement. I wrote back and confidently told her that we were going to get through this together and that I would look to her as a role model since she had already successfully gone through the process. A few weeks later, she relapsed herself.

We always said that we were going to meet each other one of these days. I am bitter that I won’t get the opportunity to give Chi Hang a hug in person, but I am more determined to get better so I can meet her sons and tell them how much their mom has inspired me.

Please post this in your facebook profile, myspage page, blog, or any other online medium you can!

We followed that up by visiting the dog park later during the day. Since we are now even more careful about Marshawn staying clean, this is the first time we’ve visited a dog park since Michelle relapsed in May. Marshawn also flashed his little smile today.

It felt nice to be normal for a little bit and do things we used to do every day. For a few hours, we forgot that we still haven’t found a donor and didn’t feel the fears associated with this grim reality. Today fittingly ended with three of our close friends from SF visiting.  After a fun dinner, we came back to the house and stumbled upon a tv special on Professor Randy Pausch, who passed away last Friday from pancreatic cancer. For those of you that have not heard of Pausch, we highly recommend you watch his now famous lecture at Carnegie Mellon. His inspirational lecture about achieving your childhood dreams has become an internet phenomenon. Michelle has his book which is also quite good (it’s a more detailed version of his lecture).

Here is a link to his lecture. It’s ~90 minutes but well worth your time. His lecture actually starts about 8 minutes into the video below.

So, the weekend was non-eventful. In between the hours spent watching Dark Knight, How I Met Your Mother Season 2, and Heroes Season 2 (thank god for the internet!), Michelle got busy on one of the 1000-piece puzzles she bought last week. Michelle is a wiz at quite a few things. Rock climbing and beer chugging first come to mind, but I wouldn’t bet against Michelle in a jigsaw puzzle competition.  Are there even such things? Google reveals there used to be some, but I guess silly fads like sodoku, iPods and the internet have since captured the minds of our youth.  Anyways, Michelle will sometimes get on a roll and refuse to eat until we pry those lil jigsaw pieces out of her hands. Here’s Michelle’s progress so far.

On the medical front, we thought Michelle might end up starting another round of chemo (regular not intrathecal) at the end of the week but some of her counts (WBCs and RBCs) have started to trend downward. Michelle’s counts have historically bounced back somewhat slowly, but this is a little atypical. We’re waiting to see if our doctor has anything to say about this. Hopefully, this is not alarming and it just means Michelle will have to wait a bit longer before the next round of chemo.

We had a lot more drives this week. The numbers continue to roll in. Michelle sends a big hug to all the Project Michelle volunteers all over the country and a hearty “thank you.”  We’re definitley hoping Michelle’s donor got registered this week.

Here’s glimpse into some of Michelle’s other skills…

During her 26th birthday celebration showing she’s still champ:

Colo Concerts Set Group Records for Donor Signups

The entire donor recruitment journey is important, but in my opinion the most crucial part is the final follow through. There is nothing more disheartening than hearing about patients who find matches, only to have their only life-saving donor back out of the process. I can’t imagine how it must feel to know that someone has the power to save your life but simply chooses not to. It surprisingly happens all the time–about 50% of registered Asians who are contacted as potential matches will decline to donate. Crazy, I know.

Despite the bumps in the road to finding my donor, I’m so inspired by the help and support from all of you who have been helping with the search. It inspires me to keep fighting.

While Michelle continues to fight the nasty side effects from yesterday’s intrathecal chemo, the rest of us are experiencing a different kind of uneasiness–still no match.

AADP has reported that thousands of home kits have been mailed out in the past three months (awesome), but only 30-35% have been completed and returned (not so great). If you haven’t already done so, please rescue that forgotten manila envelope from your growing pile of unopened mail and complete and send back the kit! The returns on that ten minute investment are immeasurable, yours could be the one we’re waiting for. And you will feel great once you’re done. Guaranteed, or I’ll buy you a beer.

If you have an extra kit lying around (you ordered one but registered in person at a drive), pass it along to one of your unregistered friends. Or use it as an opportunity to make a new friend…philanthropy is hot.
To order a kit, click below. But make sure to send it back asap!