Blog
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Thursday, September 4, 2008 - 12:59 am
Save Krissy (Update from Van)
Michelle and I too often find about another patient needing to find a donor for a bone marrow transplant. It reminds me that Michelle is not alone in her fight and that the anxiety and fear that we all feel for Michelle is unfortunately being felt by another set of family and friends.
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.
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Monday, September 1, 2008 - 10:36 pm
Say Mercy (Update from Michelle)
This past round of chemo reminded me of the game Mercy where you try to bend your opponent’s hands back until he can’t take the pain anymore and screams “Mercy!!” I was always good at this game. Not only did I have strong double jointed man hands, but I also had a high tolerance for pain. Like my Mercy opponents, I never thought that chemo was a match for me. For the last 7 rounds (including 5 last year) I’ve been able to walk out of the hospital without any pain or major side effects from the chemo. In fact, I always felt a little stronger knowing that I had successfully endured a round of chemo and now the “medicine” was going to do it’s job killing those darn Leukemia cells.
My how the tables have turned….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?
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Friday, August 29, 2008 - 12:47 pm
Feeling a Thousand Times Better (Update from Van)
“I feel a thousand times better” said Michelle this morning. After her fever spiked at 102.3 degrees at 6am, everything has improved. Her fever, headaches, itchiness, and nausea are all gone, and the x-ray and EKG results were negative. The doctors think that the side-effects were an allergic reaction to the chemo. Now, we’re waiting for some more test results and an injection, which will boost her white blood cells. We should be home in the next couple of hours…a much better way to start the weekend.
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Thursday, August 28, 2008 - 1:32 pm
Update from Van and Reflections from a Friend
Sorry that we haven’t posted in a few days. Michelle has been in the hospital getting her 3rd round of MEC (regular) chemotherapy and last round of intrathecal chemo (hooray!), which is targeting any cancerous cells in her central nervous system. Monday night was the first of three consecutive nights of receiving MEC chemo. Michelle’s side effects of sleepiness, achy-ness, and nausea are a reminder of how concentrated these doses are. Unfortunately, she’s also had a fever for the past couple of days, so the nurses took chest x-rays and a blood culture this morning with results TBD. When we wait for results from various tests like this one, I’m often hoping for a certain result. This time, I’m not sure what I should be hoping for, but i just want this fever to go away so my baby can go home and rest instead of being in the hospital.
Mitoxantrone - the “M” in MECYesterday, 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.
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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.
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This photo was taken a couple of weeks before Michelle’s original diagnosis in February 2007.
Michelle, Van, and Young Biking in Tiburon -
Monday, August 25, 2008 - 5:18 pm
Cal Football Drive a Success (Update from Van)
The Cal Football Fan Appreciation Day registration drive this past Saturday was a huge success! Big thank you’s go out to the entire Cal Athletic Department, especially the Game Day Experience crew, the Media Relations team, and of course Coach Tedford and the football players.
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!
