Neupogen

I hated the sight of needles growing up. I would always turn my head away as the sharp metal went under my skin for a vaccine shot. Even as a 24 year old, Nurses would have to remind me to exhale as I would unknowingly hold my breath during a routine blood draw. About 2 years ago, there was an incident at an injection clinic when I almost fainted. The room got very dark and my ears were ringing. I had to lie down and drink some water for a few minutes. I wouldn't say that I was deathly afraid of needles, but there was just something unnerving about the whole process that would cause an elevated beat in my heart, cold sweat to form in my palms and my mouth to dry up like I had just swallowed a spoonful of sand.

(Side note: I totally understand why people who are afraid of needles refuse to register to become donors. I never said it was easy to become a donor. It is a huge sacrifice and a very serious commitment. However, if you could overcome your fear of needles, YOU COULD SAVE SOMEONE'S LIFE....)

Never did I imagine that I would one day have to give myself daily needle injections.

This entry is about how I give myself shots to boost my white blood cell count. It's been about 2 months since my last shot of Neupogen (10/30/07) so I want to write down my notes in case I ever need to give myself one again. It's pretty amazing how fast I forget things these days. I'm just writing this down for myself. Maybe it will help some other patient who wants a refresher from the training he/she received in the hospital, but please note, I am not an expert. This is what I learned during my training session and I would recommend using the instructions your doctor gave you. I was considering taking pictures of me giving myself a shot, but I didn't want to gross people out.

How Michelle shoots up -
1. Get all of your supplies ready. I take my vial of Neupogen out of the fridge for about 15 minutes before my shot because I heard it can sting when the medicine is cold. Open up about 3 packets of alcohol pads for cleaning. Also open the package that the syringe is in. Lay the syringe on the package until you are ready to use it.

2. Give those hands a good scrub with antibacterial soap. When you are done try not to let the water run down your fingers. Stick your hands upward so the water runs down your arms. Dry with paper towels NOT cloth towels because the cloth might carry bacteria.

3. Remove the cap of the Neupogen vial and use an alcohol pad to rub the rubber top. Rub for about 30 seconds.

4. Take the syringe, with the cap on, and make sure that the needle is secured tightly on top. The needle I use is a twist-off so make sure it's on tight by twisting the top part with the cap on clockwise.

5. Remove the cap on the syringe. Draw the syringe plunger back to fill it with air equivalent to the same amount of neupogen you will be administering. I get 2mls per shot.

6. Pierce the rubber top of the vial at a 90 degree angle with the needle. It's okay if the needle doesn't go in perfectly straight. Just don't bend the needle.

7. Push the plunger so that the air in the syringe gets pushed into the vial. This will cause air pressure so that the medicine will easily flow into the syringe.

8. Turn the syringe upward (the vial will be upside down). Pull the plunger back so that you get 2mls of the neupogen. While you are filling the syringe make sure the needle is always submerged in the liquid to avoid air bubbles. To do this, you will have to slowly move the needle downward.

9. If you get air bubbles flick the side of the syringe with your fingers so the bubbles go to the top. Push the plunger to push the bubbles back into the vial. Continue the pushing and pulling until you get the right amount of the medication. You may not be able to get all of the air bubbles out, but try your best.

10. Pick an area about 2 inches away from your belly button. Clean your skin thoroughly with an alcohol pad.

11. With one hand, pinch your skin with your thumb and index finger. With the other hand, hold the syringe like a dart. Insert the needle into the skin at a 90 degree angle. Sometimes the needle may not go in at first, you may need to add a little force. After the initial puncture it should slide in easily. Only push it until the needle is completely inserted into your skin. Don't push it too hard.

12. Let go of the pinched skin and then slowly push the plunger inwards until all of the medicine goes in. I've noticed that doing this slowly reduces the amount of bruising. (At this point, remind yourself to breath!)

13. Pull the needle straight out of your skin. Do not put the cap back on (so that people know it's been used). Disposed the open needle in a coffee can or yogurt container.

14. If the area is bleeding, gently wipe with an alcohol pad.

Seems like a lot of steps, but it becomes quite routine after the first couple of times. It takes me only 2 minutes to perform the whole process now. I still have to get myself mentally fired up everytime I give myself a shot, but it's a piece of cake.

Tami Le

I wish there was a switch. A switch that you could flip at the end of your life when you are ready to go. A switch that ends all of the pain and suffering. A switch that stops the destruction the cancer is doing to your once healthy, strong and beautiful body.

On December 29th, 2007, my boyfriend's dear aunt, Tami Le, passed away at the young age of 57.

Co Tam was diagnosed with breast cancer 10 years ago. She persevered through a tough treatment plan and even had to undergo high dose chemo and an autologous stem cell transplant (a once-popular combination therapy that fell out of favor as a treatment for breast cancer). Co Tam successfully kicked cancer in the ass and enjoyed the next 10 years with her daughter Michele, her two adorable dogs (Rocky & Rolly) and countless friends and family.

Unfortunately, the cancer slowly creeped back in and a few months ago she was diagnosed with Stage 4 cancer as it had spread to her lungs and intestines. Over the last couple of months her health quickly deteriorated. The space around her lungs filled up with fluid making it very difficult to take in a full breath. What was once the most natural and automatic process of the body, became the most exhausting and frustrating struggle. Her energy was completely used up on the strenuous exercise of breathing which made it difficult to do all the things she loved most (dancing, singing, playing with her dogs, etc). Nevertheless, she remained hopeful and would never turn down our requests to visit her.

My boyfriend Van and I spent the day before she passed at her bedside with all of her many loved ones. We sat there in silence and watched her. Though you couldn't read her closed eyes and she was much too weak to even whisper a single word, we could sense the enormous amount of discomfort she was in by observing those frowning brows across her beautiful skin. We wanted the pain to end and were telling her that it was okay to let go. We thought she was going leave us that afternoon, but being the fighter that she was, she clung on until 11:03pm the next day to spend just a little more time with her loved ones. It was heartbreaking to see her go, but I feel relieved that she is no longer suffering.

This past year I felt extremely connected to Co Tam because she was one of the few people that really understood what it is like to be in my shoes as a cancer patient. She was extremely supportive and shared her own experience with me so that I could become a smarter and stronger patient. I always admired her for her determination and perseverence and I will continue to look to her as an inspiration to never ever give up.

Happy Belated Turkey Day!

Not much to report. I am still just hanging out. Thanksgiving was spent with my family and Van. My younger Big brother Michael did all of the grocery shopping and Melanie and I helped him cook. I have much to be thankful for and it meant a lot to me to spend Thanksgiving with the people that matter most. I am looking forward to many more turkey dinners to come.

My white blood cell counts are finally stabilizing. With my new and improved immune system, I have decided that I need to get out of the house and be productive. My first idea was to start training Marshawn to become a therapy dog...you know the pets that visit senior citizen homes and hospitals. I think Marshawn would do a fantastic job because he is very sweet, friendly and smart. Plus he definitely brings sunshine into my life and I would love to share that with people who need a bit of cheering up. Unfortunately dogs have to be atleast 1 year old. :( Luckily I found a couple of other volunteer opportunities to keep myself busy.

I am tutoring at John Muir Elementary School in San Francisco on Thursdays with the Tzu Chi organization. We help the kids (1st - 5th grade) with their assignments. I've always loved working with kids and this was a great program to join. The kids really enjoy the one-on-one attention they get and some of them need a lot of help because they are quite behind on the fundamentals.

I also just started working at the AADP to set up a more structured volunteer/internship program. Hopefully we can get people to volunteer regularly at drives. I've noticed that most drives are run by the patient's friends and family, but it would be nice to have a core team of volunteers to work at any drive when needed.

It makes me really happy that I am able to dedicate myself to some great organizations. (Now I don't feel so guilty about all of my hours spent watching the Food Network channel and my new favorite reality show Jon & Kate Plus 8.) Please let me know if you want to join me! Both Tzu Chi and AADP can use all of the help they can get.


Love,
Michelle

P.S. Our new donor count is 1945. Big thanks to KPMG SVO, Most Holy Trinity Church, Great Exchange Church, Kaiser and Wat Buddhanusorn Thai Temple for all of the support and amazing results!

P.P.S. I'm running out of locations to host bone marrow drives. If you have a venue in mind please let me know!

Drives in So Cal

**Quick update on things..I went to see Dr. X on 11/2 and he said that my blood counts need to stabilize a little more before I can get the bone marrow biopsy done. He believes that it'll be at least 2 more months before I will get the biopsy. Hopefully shortly after that I can get the groshong catheter removed. I'm a little bummed because I was hoping to get both of these procedures done last week. (I can't wait to take a normal shower without having to worry about the catheter in my chest.) I'm going to spend the next 2 months building up my strength and energy so that I can ease back into "normal" life.

Most of the drives that we have organized have been with the Asian American Donor Program in the San Francisco Bay Area. However there are many other donor recruitment organizations throughout the US that you can contact to get registered if you don't live in the Bay. The organization in Southern California is called Asians for Miracle Marrow Match (A3M). This month they have planned many drives in So Cal and Houston to help me find a match. If you or your friends and family are in So Cal or Houston, please check out A3M's upcoming drives!

1) 11/11/07 From 12 pm to 3 pm at Vietnamese Baptist Church of South Bay - 2051 W 236th Street, Torrance, Ca 90501
2) 11/13/07 From 10 am to 3 pm UCI Campus, Irvine, CA
3) 11/13/07 From 10 am to 3 pm UCR Campus, Riverside, CA
4) 11/14/07 From 10 am to 3 pm UCI Campus, Irvine, CA
5) 11/14/07 From 10 am to 3 pm UCR Campus, Riverside, CA
6) 11/14/07 From 9 am to 3 pm UCLA Health Dpt, Los Angeles, CA
7) 11/15/07 From 10 am to 3 pm UCI Campus, Irvine, CA
8) 11/18/07 From 8 am to 12 pm Our Lady of LaVang Church - 288 S. Harbor, Santa Ana, CA 92704
9) 11/20/07 From 10 am to 3 pm UCLA Campus, Los Angeles, CA
10) 11/21/07 From 10 am to 3 pm UCLA campus, Los Angeles, CA
11) 11/23/07 From 8 pm to 12 am Our Lady of Lourdes Festival, Houston ,TX
12) 11/24/07 From 10 am to 12 am Our Lady of Lourdes Festival, Houston, TX
13) 11/25/07 From 10 am to 12 am Our Lady of Lourdes Festival, Houston, TX

Hooray to Lend a Hand!

Lend a Hand did an awesome job organizing the drives in Houston this past Sunday. LAH volunteers created posters and flyers and spoke on local radio stations. All of their hard work really paid off because they ended the day with 244 Vietnamese people registered! A Gulf Coast Blood Center recruiting coordinator sent an email afterwards and wrote "I wanted to see what the Houston donor center has done in the past. Houston has registered a total of 542 Vietnamese, since 1991. From Jan. of 2006 to Jan. of 2007, we only registered 97. Needless to say, you all were very successful this weekend!"

I am ecstatic about LAH's success! In just one day, LAH increased the Vietnamese donor count in Houston (that took about 16 years to build) by almost 50%. LAH is not stopping yet either. More drives are in the works and LAH is hoping to get hundreds more to register.

Bravo LAH. One of these days I would love to meet you and give you all big bear hugs!

Isn't it amazing what people can do when they come together to fight for a cause???

P.S. Project Michelle has helped register 1524 people total! :D

Cal Drive Great!!

Although my last entry was a bit of a downer, I do have some really good days that lift my spirits. For example, our Cal Bone Marrow Drive was a huge success. Over the 2-day drive we got 344 people registered. Additionally, over 75% of the people who registered were ethnic minorities. These are amazing results! I am so grateful to the student volunteers that spent hours under the scorching sun to flyer (I haven't sweat that much in a long time). I was impressed at how effective the volunteers were at explaining the process and alleviating people's fears about donating. Everyone did an amazing job.

Thanks to all of the volunteers and people who got registered. Special thanks to Tony Tran (Lambdas), Chen Lu (Engineers Joint Council) and Brandon Hogstad for their extra hard work. Lastly a gigantic thank you and hug to Glenna Lee from AADP for helping me spearhead the event.

This event really showed me that the success of a drive depends on good marketing, good location and most importantly good support from the sponsor group. Who else is excited about Cal Bone Marrow Drive Spring 2008???? :D

P.S. Please check upcoming drives on our calendar. We are going to have a busy November. Additionally, there are a bunch of drives this coming Saturday, November 4th, in Houston hosted by the Lend A Hand VYO, Inc. If you can't make any of these, check out AADP's website for a full listing of upcoming drives in the Bay Area.

I feel like a Blob

Lately, I look back on the day and I get bummed that I really have nothing to show for all of the free time Leuk has given me. Pre-Leuk, my plate of life used to be filled to the brim with work, community service, outdoor activities, exercising, dancing, performing, etc, etc. I used to love checking off a loooong laundry list of to-dos because it made me feel like I was being productive. I know that I am the only one that can motivate myself to get off the couch and make myself useful, but I am just so drained, unmotivated and lazy. A part of me doesn't want to do anything until my counts stabilize and I get the results of my bone marrow biopsy (hopefully in 3 more weeks). I hope I get out of this funk soon because it is turning into a downward spiral of negative energy and it is doing a number on my self esteem.

Cal Bone Marrow Drive!!!!!

We are hosting a big bone marrow drive at UC Berkeley Tuesday and Wednesday of this week (10/24 - 10/25) from 10am-3pm on Upper Sproul near Sather Gate. We also have a 2nd location at the Campanile. I am extremely excited about this drive because we have 10 different student organizations who are co-hosting the event (Lamdas, AXiO, PAPhi, Sigmas, SOPi, VSA, APhiO, SASC, Engineers Joint Council, AAHC). ASUC granted us some money which we used to make really nice t-shirts and flyers. A big THANK YOU to all of the students volunteers who have worked on this event.

Please help us spread the word to anyone you know who goes to Cal or lives in the Berkeley area. Since this is a college campus drive ANYONE (does not have to be a student) can register for FREE (it normally costs $52 for Caucasians to register because there is federal funding for ethnic minorities only).

My fingers are crossed for good weather and a good turn out!

P.S. Our registered donor count is up to 934 after a great bone marrow drive at my sister Melanie's sorority where we got 49 of her sorority sisters to register. Thank you Cal AOPi!!

I love technology

From: MAYKIN,MICHELLE K

Sent: 10/17/2007 12:39 PM
To: Office of Dr. X
Subject: 10/17/07 WBC Count

Hi Dr. X,

I gave myself 2 shots on 10/10 and 10/11 like I normally do when my wbc dips. However, it looks like it's dipping again and today my wbc is 1.9 with an ANC of 874. Should I give myself another shot of Neupogen?

Also, today at my blood draw appt my nurse suggested that I get a flu shot. She said that it is okay for neutropenic patients to get the flu shot, so I opted to get one. Just wanted to let you know.

Lastly, I was hoping to fly to LA this weekend for the UCLA vs Cal football game. Do you think I am well enough to go?

Thanks,
Michelle

RE: 10/17/07 WBC Count

To: Michelle K Maykin

From: Dr. X

Received: 10/17/07 3:30 PM

Yes, resume Neupogen PRN. I trust you and your understanding of your clinical state. Also, it's OK for you to go to LA.

----- Message -----

Above is a typical email that I send to my doctor whenever my counts are low so he can tell me how to proceed. I really appreciate the Kaiser email system because it is the easiest and fastest way to communicate with my oncologist. You can also get your blood results online so that you don't have to call the lab. It saves a lot of time. If only I could book my appointments online too.
As you can see, my white blood cells have not stabilized on their own yet. I am still giving myself periodical shots of Neupogen to boost my white blood cell counts. I am hoping by the end of this week my counts will stabilize. It's been a little over 4 weeks since my 5th round of chemo.

Marshawn Maykin

Meet my new puppy Marshawn. He is a lean, mean three pound barking machine. Van and I got him from a breeder in Nebraska just 2 weeks ago (10/3). It's hard to believe I've only had him for 16 days. It feels much longer because I spend all of my time with him. This puppy has had a very eventful October. He flew on a plane, went to the vet to get his last round of shots, got his hair did at the groomers, met over 80 people, slept in 3 different houses, had a puppy party to meet all of our friends, had 2 puppy playdates, and attended 2 puppy training classes. He is a great addition to our family.

During my last round of chemo, I made up my mind that I was ready to take on a puppy. I've been wanting a yorkshire terrier since college and I figured that now would be a good time to get one since I have some time off until I start working again. Hopefully by January Marshawn will be a well trained gentledog. I am proud to say that we already taught him how to sit, lie down, shake hands and roll over.

I'm sure some people out there think I'm foolish for not waiting until I'm completely "cured." I thought a lot about this and I realized that I can't put my life on pause until I'm clinically "cured" of cancer. I could relapse at any given moment so there will never be a perfect time to get a puppy. I also picked a yorkie because they are more hypo-allergenic than other dogs and they don't shed hair. I am making sure that this puppy is germ-free and clean at all times so my health is not compromised. I think my best friend Mabel put it best when I asked her if she thought I was being irresponsible for getting a dog. She said, "Dude, it's a dog. If it doesn't work out, you can always find it a good home." Ahh Mabes, always the voice of reason. Yorkies are the #2 most popular dog in the nation. Plus some of my friends have already fallen in love with Marshawn, so I know if something were to happen (knock on wood) Marshawn will be well taken cared of.

Missing Michelle

It has been a while since I've posted an entry. I've always said that it's very hard for me to write down my "feelings" on paper. Writing a post takes a lot longer for me than the average blogger. I erase about 50% of what I type because when I reread the material it just sounds lame, elementary or stupid. Written words don't flow from my fingers the way spoken words tend to spew out of my mouth (whether I want them to or not). I wish I was an amazing writer who could captivate my readers with earth-shattering, thought-provoking, profound and witty commentary on social issues, the meaning of life, and my "feelings." Honestly, I never would have considered writing in an online journal if it wasn't for Leuk. Please bear with me as my entries become more sporadic and infrequent. You really have to catch me on a good day when I'm feeling chatty for me to feel compelled to write something (this is one of those days).

Perhaps it's a good thing that I have less to say these days. That just means that my treatment is going so well I don't want to bore people with the minute details of Michelle's daily life. Honestly, it's not very exciting, but here's a breakdown if anyone's interested:

- draw blood every other day
- get transfusions if I'm low on platelets or red blood cells *No need since 10/4 when I got 2 units of blood :D
- take medicine twice a day
- try to rememer to eat 3 times a day
- try to remember to do my breathing/meditation exercises
- read other cancer patient's blogs
- send emails about bone marrow drives
- take care of my NEW puppy Marshawn Maykin (more about him in my upcoming entry)

Thanks everyone for visiting the site to look for my new posts. I know what it feels like to check someone's blog and be bummed that they haven't made a new post in a couple of days (or weeks). However, you can take my absence as a good sign that I am happily recuperating at home.

On a side note, I had my checkup appointment with my oncologist on 10/5 and he scheduled my next checkup for 11/2. He said that we are going to wait until all of my counts stabilize before he performs a bone marrow biopsy and takes out my groshong catheter. My white blood cells are still as stubborn as ever and they refuse to bounce back up. Luckily they are quite manageable with my Neupogen shots (more about this in my upcoming entry).

What happens when you are low on platelets?

My last post was about my platelet transfusion, but I want to take the time to talk a bit more about platelets. Platelets are a type of blood cell that helps your blood clot so you don't bleed out. People with a low platelets have bruises that seem to appear out of nowhere. A couple of months before I was diagnosed I noticed that I had a bunch of bruises on my legs. I thought maybe I was kicking the wall in my sleep or bumping into things without realizing. It turns out that my platelet count was only 10% of the normal level. I've heard cases where people who don't know they have leukemia will go to the dentist and their gums won't stop bleeding. When they go to the doctor's to have it checked out that's when they are diagnosed with leukemia. Bleeding gums and bruising are a few signs that you may be low on platelets - doesn't necessarily mean you have leukemia.


Platelet cells only live for a couple of days. Even if you get a platelet transfusion, you might be low again in just a few days. I always know when I am low on platelets because when I the area where I give myself shots on my stomach gets very bruised from the needles. Here are some pictures from a blood draw just 2 days after my platelet transfusion. (I usually get my blood drawn from the catheter in my chest, but the oncology clinic was closed on Sunday so I went to the regular lab and they drew blood from my arm.) I couldn't believe how black the bruise was. I knew right away that I was low on platelets again and I actually had to get another transfusion the next day. Luckily there were no allergic reactions this time. :D

Before I got sick, I had no idea what platelets were (I missed that part in high school biology I guess). I've come to learn that you can actually donate your platelets similar to how you donate blood. Because platelets only live for about 5 days, there is always a need for platelet donations. To learn more, please visit the Red Cross website or contact your local blood center.

ARG

Managing your treatment can be a big fat headache. Even though I try to stay on top of things, sometimes you just have to throw your hands in the air and say "I give up! Nothing I can do can control this situation. I'm just going to let nature take it's course and hope everything will work out."

Today was one of those days. I got my blood tested at the Fremont infusion clinic at 9am this morning. My results came in electronically through email around 11:30am. Here are my counts with the normal range in (__):

WBC: 0.7 (3.5-12.5 K/uL) - LOW
RBC: 2.60 (3.60-5.10 M/uL) - LOW
Hemoglobin: 9.4 (11-15 g/dL) - LOW
Platelets: 13 (140-400 K/uL) - VERY LOW

As soon as I got my results, I emailed my doctor and called his nurse to let them know that my platelet count was very low and that I probably needed a transfusion (I tranfuse when platelets are below 20). In my message, I asked if I could get the transfusion at the Walnut Creek clinic since I was already planning to come to the Walnut Creek Hospital for my scheduled check up appointment with my oncologist at 3:40pm. (FYI, it's about an hour drive from Fremont to Walnut Creek)

For me, platelet tranfusions wipe me out because I take Benadryl to limit any allergic reactions. I get crazy hives when I don't take Benadryl before my platelet transfusions. Ideally I wanted to get the transfusion after my doctor's appointment so I could go straight home and rest.

My doctor's nurse called at 12:30pm and said that I should get the transfusion at the Fremont clinic because everything had already been ordered there. She said she was going to call Fremont to make sure everything was in order. By 2pm I had not heard anything from either my doctor's nurse or the Fremont clinic. I called both locations and left more messages to let them know I was still waiting to hear back from them and that I was planning to head to Walnut Creek for my check up. Fremont called me back to say that they had not ordered the platelets because they agreed that I should get the platelets at Walnut Creek. My doctor's nurse called again and said that I couldn't get the platelets in Walnut Creek because she had not arranged anything. She said that it shouldn't take Fremont that long to order the platelets (even though in reality it always takes about 2-3 hours to order them). I argued that if it wasn't going to take Fremont that long, why couldn't it be just as easy to order them in Walnut Creek. After multiple calls back and forth, it was finally decided that I would cancel my doctor's appointment in Walnut Creek and get my transfusion in Fremont at 4pm before they close for the weekend.

At the end of the day, everything worked out. However, this whole ordeal took up my entire morning and it just made me realize how difficult it must be for people who speak English as a 2nd language or older people that don't have the energy to deal with all of this. How frustrating...

Round 5

On Monday, 9/17/07, at 4:30pm I checked into the hospital for my 5th and FINAL round of chemotherapy. My 1st bag of High dose Ara-C (aka Cytarabine) started at 9:30pm and ended at 12:30am. This is great because the nurses don't have to come in my room during the middle of the night. So far, so good - No major side effects or infections in sight. Hopefully, I can ditch this joint by Saturday afternoon if all things go well.


It is hard to believe that this is coming to an end. When I first got sick, I could not wait to be finished with my treatment. I thought
6 months was going to feel like an eternity. I was so excited about being "normal" again. Now that I am well into my 7th month of treatment, I am shocked at how fast time has flown by. Although I am looking forward to my life post-chemo, I am very nervous about going back into the "real world."


I know that I have to remain positive, but being the worrywart that I am, I cannot help but to feel a bit scared. For the last 7 months, my cancer has put my life on pause. Once the play button is pressed, I must go back to the grind of work, regain control of my life, and sort out my future. I am hopeful that my transition will be painless and easy, but I surely have my doubts. Of course there will always be the voice in the back of my head to remind me that there is a good chance that I can relapse at any minute.

Luckily, I know that I can count on my family and friends to help me sort things out. One of my favorite places I always turn to for support is the Wat Buddhanusorn Thai Temple in Fremont. The pictures are from my recent visit to the temple. I grew up at the temple and I love coming back to see familiar faces and to catch up with all of my "aunts" and "uncles." These people have always been by my side and have molded me to what I am today. I can not thank them enough.

Don't get me wrong, I am definitely looking forward to the end of my treatment. I just wanted to share with you some of my thoughts.

Maykin Use of Time

Organizing bone marrow drives have become a full time job for me. I am fully absorbed in the process and I have to remind myself daily that there are other things I should be doing i.e. eating regularly, drinking water, taking my medicine, meditating, etc. Setting up drives have become a bit of an addiction. Once you complete a drive, there are always so many other people and groups you can contact to get another one going. This is extremely motivating and exciting to me, but also overwhelming at the same time. Unlike a project at work that has a completion date, the work for bone marrow drives never ends. However, my good friend Linh recently reminded me that all of these drives are happening because of me. This makes me motivated to dedicate my time to make them happen. Plus seeing other people work on the drives also inspires me to do more.

This past weekend we got 23 people to register at CaliToday. The drive in Houston was a great success too with 105 people registered. Thank you so much Chu Nam and Dr. Julie Nguyen for hosting these drives. I am happy to report that our new total is 825 people registered!

At the CaliToday drive, there were many senior citizens that came to register. Unfortunately, they did not meet the age requirements (18-60), but I was very touched that many of them walked or took the bus to get to the drive. This cute grandma in particular initially told us she was 59, but we looked at her driver's license and it said she was well over 70. She tried repeatedly to persuade Carol, the AADP Executive Director, to let her register. She said that she was confident that she was my match. She said even though she was over the age limit she was completely ready and willing to sacrifice her marrow. She refused to take no for an answer, but we eventually had to turn her away for her own safety. I was very touched by this lady and I wish that we will meet more selfless people like her at our drives (within the age limit).

People have been asking me what else they can do if they have already or can't register. Here's a short list of ideas:
1. Spread the word to your family and friends and encourage them to register.
2. Help organize a bone marrow drive.
3. Volunteer at a bone marrow drive .
4. Volunteer at AADP. This small team of people work day and night to help patients like me find marrow matches. They are always open to a helping hand whether it's fundraising, making test kits, etc.
5. Fundraise for a cause. A few off the top of my head are: AADP, NMDP, LLS, CLLF, etc.

Wedding Trip

For the Labor Day Weekend, I attended the wedding of my dear friends, Ami and Veeral at the Biltmore Hotel in Los Angeles. Veeral is one of Van's best friends. I have always been a big fan of weddings, but unfortunately have missed 6 of them this year because of my illness. (I am one of those girls that can watch hours of The Wedding Story on TLC. Weddings are always full of excitement, drama, love and good food. What's not to love?)

We were very nervous that I wasn't going to be able to attend this wedding because my counts were still low from Round 4. Luckily, my oncologist gave me the approval to fly to Los Angeles to attend. It was by far the most spectacular bash I have ever been to (and may ever go to). We had a fantastic time not only because the lovebirds had thoughtfully planned out every single detail of the perfect party for their guests to enjoy, but also because there was an amazing sense of bond and positive energy throughout the weekend. The serotonin levels were off the charts!

Over 600 people gathered to celebrate the love between Ami and Veeral. I was very honored when Veeral recognized Van and me during his speech. It was a total surprise resulting in uncontrollable tears from the both of us. All of their friends and family showered us with unconditional love. Considering that Veeral and Ami are two of the most caring, thoughtful and loving people I know, it only made sense that their friends and family would be of the same pedigree.

For a short time, it made me forget about Leukemia, bone marrow drives, chemotherapy, blood draws, medicine, etc. It was an unforgettable experience.

Congratulations Newlyweds! I love you guys!

Upcoming Drives

Thank you to everyone who has expressed interest in hosting a drive. I really hope that I can help others host their own drives.

Our last couple of drives have been pretty good. So far we have gotten 697 people to register. There are 2 drives coming up this week. One in San Jose and one in Houston. Dr. Julie Nguyen and her team of friends and family have put a ton of work into this upcoming Houston drive. Just in the last 3 weeks they have done the following:

1. Recruited 24 volunteers to help at the drive
2. Got the Kim Son Restaurant to set up tables and provide drinks and a banner.
3. Spoke on Saigon Houston radio and Vietnamese American Broadcasting (VAB) to raise awareness on this effort.
4. Solicited ideas from Hoa Lu and Milby members about other ways to promote this cause.
5. XayDung magazine published over 1000 copies and distributed a ll around Houston with my picture and great articles about leukemia and bone marrow drives. Also posted flyers all around Houston.
6. Created PROJECT SWAB (Save With A Brush) in collaboration with Dentist Anna Marie Nguyen to swab all of her patients' mouths. They are also trying to get other dentists involved.

This is just one example of the many groups of people who have graciously helped us promote this cause. Thank you so much for all of your hard work, love and support!

Getting closer to the finish line.

Time is flying by faster than I would like it to. I can't believe I am at the end of another week. I don't know where my time goes these days and I still have a long list of things I want to get done (work on the website, send letters to politicians, write emails, finish my real estate course, make a video encouraging folks to register, etc). I blame my procrastination on the chemotherapy. A common side effect of High-dose Cytarabine is fatigue. I'm not tired to the point that I need naps all of the time, but I've noticed that it just takes me longer to do things.

My wbcs have not stabilized yet which is consistent with my previous rounds of chemo. Yesterday, my wbc = 1.7 (normal range = 3.5-12.5), so I had to give myself another shot of neupogen to boost my stem cells to produce more white blood cells. Even though I've probably given myself over 30 shots, I still haven't gotten used to the initial piercing of my skin. I still have to take a deep breath and give myself a quick pep talk..."Don't be a wimp Michelle! It's not a big deal. Just get it over with!" When it's over, I sigh with relief and go on my merry way. FYI, it doesn't hurt that much.

Luckily, I have not caught an infection despite the fact that my immune system is still weak. I try to avoid public areas and large crowds of people. My doctor just told me today that my 5th and final round of chemotherapy will begin on Monday, September 17th. Then after that, I'll have about 2-3 months to recuperate from the chemotherapy. Hopefully my energy will come back. Once round 5 is over, I will just wait and see if I relapse. If I do relapse (50% chance), I will need a bone marrow transplant. I am praying that I don't relapse.

I am the messenger of good news today. All of our drives have been extremely successful!! Here are the official numbers:

Wat Buddhanusorn Thai Temple (Sun, 8/12)– 39

Dr. Lam Do's Office (Sat, 8/18)- 48

St. Patrick Proto-Cathedral (Sat, 8/18) – 34

St. Patrick Proto-Cathedral (Sun, 8/19) – 110

Chua An Lac Vietnamese Temple (Sun, 8/19) – 142

This brings us to a total of 373 registered! I am totally blown away by the great turnout.

Thanks to everyone who got registered at one of our drives this past weekend. You have done a very amazing thing. A special thanks to AADP for leading the drives and my family who spent all weekend volunteering.

The best news of all is that I just spoke to Mr. Hong's Bone Marrow Transplant Physician who told me they found an unrelated donor in the United States who is a PERFECT match! 10 out of 10 HLA tissue markers match between the donor and Mr. Hong - you can't get much better than that. Congratulations Mr. Hong!

LA Chung did a follow up article (8/22/07) about Mr. Hong on the San Jose Mercury Newspaper. Click here for the article.

A big THANK YOU to everyone who has been helping my mom and me work on Mr. Hong's case. Let's all keep Mr. Hong in our prayers as he is currently undergoing another round of chemotherapy in preparation for his bone marrow transplant which will occur in about a month.

I am all smiles today...even though I'm still stuck at home because of low blood counts across the board. It would be nice if my WBCs, RBCs and platelets would join me in the celebration by jumping up a little bit. :D

Click here for the actual article.

Bone Marrow Drives, Here We Come!

After weeks of doing tv/radio recordings, flyering, answering emails and phone calls, we are finally hosting our first weekend of drives for the San Jose Vietnamese community. I am a little disappointed in my white blood cells for not coming through this weekend. I was hoping I could meet all of the wonderful people who are "Maykin" a difference by getting registered. Don't worry, I will be calling my family periodically to see how we are doing.

Last Sunday, we had success at the Thai Fremont temple with 41 people registered. I am hoping that we can at least match this number at each drive this weekend.

Thank you to all of my mom's friends who have been publicizing my story on their tv and radio stations. But most importantly, thank you to my Super Mom for doing everything for me. Not only has she been driving all around town to spread the word, but she has to come home every night to a not-so-nice daughter.

On a side note, LA Chung from San Jose Mercury News did an article on me. Go to: http://www.mercurynews.com/columns/ci_6656579?nclick_check=1

Today's counts

Here are my blood counts for today (8/17/07) with the normal range in parenthesis:

White Blood Cell - 0.2 (3.5 - 12.5)
Red Blood Cell - 2.77 (3.60 - 5.10)
Hemoglobin - 9.2 (11.5 - 15.0)
Hematocrit - 26.8 (34.0 - 46.0)
Platelet - 10 (140 - 400)

As you can see, the chemo is kicking in and starting to kill my blood cells. This is the normal cycle of chemotherapy, so do not be alarmed...we knew this was coming.

Two of the stats that stick out as red flags are the white blood cells and the platelets. My low white blood cell count means that my immune system is very weak right now. I must wear a mask when I go outside to protect myself from any disease, bacteria, etc. To treat low white blood cells, I give myself daily shots of Neupogen, a drug that boosts the growth of white blood cells. However, the drug is not strong enough to keep my counts at normal levels. I will continue to give myself shots and wait for my stem cells to recover from the chemo. Hopefully, my white blood cell count will go up in a couple of days.

My low platelets make me at risk for bleeding. Platelets are what makes your blood clot when you get a cut or a bruise. I try to avoid shaving and bumping into things because I could bleed to death. To treat low platelets, doctors give you a transfusion of platelets similar to a bag of red blood cells that we are normally used to seeing. Unlike red blood cells which are red, platelets are yellow. It kind of looks like a bag of thick yellow urine to me.

I got a platelet transfusion this morning. Unfortunately, I had an allergic reaction to the platelets which made me break out in hives all over my body. I felt like an itchy red ball of fire. My skin was burning up and I had bumps everywhere. My nurse quickly gave me an IV shot of Benadryl. I love Benadryl because it immediately makes the itchiness go away, but I hate how it makes me completely out of it for the rest of the day. I slept for 5 hours straight when I got home after my platelet transfusion.

I am very sad that my white blood cell count is very low. I was looking forward to attending all of the drives this weekend. Unfortunately my family and I think it is best if I stayed home to avoid the large crowds of people. My fingers are crossed for a great turnout. Thank you to all of the volunteers and the people who get registered this weekend. Bubble Girl will be with you at the drives in spirit!!

Locks of Love

As you can see, the website has been getting a makeover! Thank you so much Mabel and Webmaster Will for spending countless hours on the site. I think it looks great and I'm excited to add more stuff to it. Videos and more information in Vietnamese coming soon!

I've been meaning to write an entry about my hairloss, so here it goes... On Saturday, 3/3/07, just 4 days after I was diagnosed with Acute Myeloid Leukemia, I decided to chop off my hair to donate to Locks of Love, a non-profit organization that provides hairpieces to financially disadvantaged children with long-term medical hair loss. Why let my long hair go to waste since it was going to fall out anyways? I was trying put into practice the old saying, "When life gives you lemons, make lemonade!!"


My family, Van and Mabel all took turns snipping away at my head. We made it a big event and it was actually quite fun. My brother Michael and my boyfriend Van shaved their heads too. Additionally, I have 8 other friends who shaved their heads for support. Thanks Hung, Ben, Tony, Matt, Lijen, Norman, Veeral and Bryan! You guys sure know how to cheer a girl up.

This was actually my 2nd time donating to Locks of Love. The first time I donated was when I started UC Berkeley in Fall 2000. I first learned about this organization on television and I thought it was a such a great idea and good way to give a piece of myself to help someone who is going through tough times. (Plus, I secretly thought of it as my offering to the college gods to help me do well in school. A little good karma never hurt anybody.)

For about 2 weeks after my chemotherapy, I did not see any hair fall out. By the 3rd week, my hair was coming out in huge clumps. My mom got annoyed because I kept on tugging at my hair. It was pretty crazy to see how much hair would fall out whenever I pulled on it. Little hairs were everywhere. I had to change my pillowcases like 5 times a day. Plus they were always poking into my skin. It made me extremely itchy. By the time I was discharged after my 30 days in the hospital, I was completely bald.

I felt very self conscious about my baldness. My comedian friend Sheng Wang jokes that people should view balding as "face gain" not "hair loss". I thought that was a very clever way to put it. Unfortunately for me, it was hard to embrace the "face gain" because I felt so naked without my hair. I think it's a million times harder for a girl to lose her hair than a guy. Instead, I embraced "helmet coverage". The first day I was released from the hospital, I went straight to the mall to buy doo rags, hats, scarves and bandanas. For the first couple of months, my bald head was nowhere to be seen in public as I usually kept it protected under some sort head dress.

My hair only fell out after the 1st round of chemotherapy. During Round 1 (aka "Induction Phase"), I was on 2 different kinds of chemo drugs, Idarubicin and Cytarabine (Ara-C). I think Idarubicin is what caused my hair loss because in the subsequent rounds of chemotherapy (aka "Consolidation Phase") I have only been receiving High-dose Cytarabine and my hair is not falling out at all. Luckily my eyebrows and eyelashes never fell out which was a pleasant surprise because I heard many chemo patients lose their eyebrows.

Currently, my hair is growing back nicely. It is very black and soft. My nurse said the hair is soft like baby's hair because all of the hair follicles are brand new. The best part about losing my hair was my donation to Locks of Love especially now that I know what it feels like to be bald. I got a postcard in the mail from Locks of Love thanking me for my donation which will "benefit a Locks of Love recipient and change their life for the better".

If any reader out there has long hair and is planning to chop it off, I highly encourage you to donate your hair to Locks of Love. Your contribution will brighten someone's life!

Viet Tribune Article about Michelle (for Vietnamese readers)

(Please go to: http://www.viettribune.com/vt/index.php?id=1256 for the actual article on the Viet Tribune website.)

August 04, 2007

Nước mắt Hoa Tình Thương

Giao Chỉ

Ở San Jose từ nhiều năm nay có một hoạt động khá đặc biệt của nhóm Tình Thương. Quanh năm vận động người tình nguyện đi làm toàn những công việc từ thiện rắc rối. Thăm phụ nữ trong tù. Thăm các em thiếu niên trong trại quản giáo. Mới đầu thì chỉ giới hạn thăm nom người Việt Nam trong vòng lao lý. Sau rồi mở rộng thăm viếng tất cả mọi trẻ em ở tù. Công việc tiến hành đều đặn và đã trở thành truyền thống hàng năm.

Sáng kiến hay nhất là mua hoa đem vào trại tù thiếu nhi dạy các em làm một giỏ hoa. Đến ngày Mother day, lễ Tạ ơn hay Giáng sinh mẹ em vào thăm, em bé tù thiếu nhi có món quà cho mẹ. Thật không còn gì hay hơn. Giới chức Hoa Kỳ rất ngưỡng mộ. Các nhân viên xã hội rất hoan nghênh.

Người đứng ra tổ chức các chương trình thăm viếng như thế được trại tù đặt tên là Flower Lady. Cô tên thực là Hoàng mộng Thu, suốt đời hăng hái làm việc thiện nguyện. Đôi khi hơi quá hăng hái nên cũng gặp trở ngại, nhưng với tấm lòng chân thành, Flower Lady vượt qua mọi khó khăn.

Rất ít người biết về cuộc sống riêng tư của thiếu phụ Việt Nam bôn ba lận đận nầy. Cô lập gia đình với ông người Thái Lan khi mới qua Mỹ. Sinh hạ được 3 người con thì chia tay đôi ngả. Nhưng Hoàng mộng Thu rất bằng lòng với 3 đứa con trưởng thành và xinh đẹp : 2 con gái, một con trai .

Những đứa con gái theo mẹ Việt Nam tham gia sinh hoạt cộng đồng từ lúc còn thơ ấu nhưng lại biểu diễn tài nghệ múa hát theo máu huyết của ông bố Vọng Các.

Con gái đầu lòng Michelle năm nay 25 tuổi là giai nhân mang hai dòng máu Á Châu: Thái Việt .

Michell Tran tại công viên Yosemite. Photo: IRCC

Tốt nghiệp Đại học Berkeley với hai văn bằng kinh tế thương mại và quản trị hành chánh. Và em cũng mới có nửa mối tình đầu. Một chàng trai Việt Nam. Tương lai cô bé con gái của Flower Lady như nụ tầm xuân mới nở hết sức tốt đẹp.

Cho đến tháng 2 năm 2007 Michelle thấy nhức đầu khó chịu trong người.

bèn đi khám bệnh, tưởng là chuyện bình thường. Nhưng rồi bản án của y khoa rơi xuống số mệnh của cô bé bất hạnh như trời xập.

Hết sức lo sợ và buồn rầu. Những giọt nước mắt tiểu thư đầu tiên của cuộc đời đau thương chảy xuống.

Em đã bị bệnh Leukaemia. Một thứ ung thư máu nguyên do vì bạch huyết cầu phát triển nhưng không còn khả năng hữu dụng.

Đó là mầm bệnh mà 36 năm trước trong chuyện tình “Love story”, cô vợ trẻ mới cưới của chàng sinh viên Hoa Kỳ đã phải chịu đựng rồi qua đời trong vòng tay người yêu làm cả nước Mỹ nhỏ lệ.

Vào thời kỳ đó nước mắt của khán giả trên khắp thế giới làm mờ cả màn hình điện ảnh toàn cầu. Em Michelle có đọc chuyện này từ lúc còn ở trung học nhưng không bao giờ nghĩ rằng sẽ đến lượt mình.

Sau khi thử máu đã xác định bệnh lý. Người ta giữ em lại nhà thương để làm Chemotherapy ngay lập tức. Bây giờ chữ nghĩa Việt Nam gọi là “Hóa chất trị liệu”. Nhiều gia đình chúng ta có bệnh nhân ngày nay đã quen thuộc gọi là đi làm “Ki mô”. Thường là những bệnh nhân lớn tuổi khi cơ thể cũng như các tế bào bắt đầu lão hóa dễ mắc ung thư. Nhưng ở đây,số phận không đợi tuổi.

Và em phải xin nghỉ việc để đi vào con đường đó dù mới ở tuổi hoa niên. Cuộc đời của em ngày nay là sống để chữa bệnh. Michelle tuyên chiến với một căn bệnh hiểm nghèo nhất của nhân loại. Bệnh Ung Thư.

Vì em còn trẻ nên bác sĩ cho điều trị Chemo liên tiếp cả tuần. Một tháng của em bây giờ không phải là chu kỳ 30 ngày mà là 5 tuần lễ. Sau 1 tuần từ nhà thương trở về, em phải qua 2 tuần liền chịu đựng rất mệt nhọc, và lo về quản trị hành chánh. Bây giờ các con số rơi rụng hết, em tự theo học về y khoa, và chỉ học về một bệnh duy nhất mà mầm bệnh nằm trong máu của em. Em biết có bao nhiêu cơ hội sống và bao nhiêu phần sẽ ra đi. Em có 50% sẽ qua khỏi nếu đi trên con đường Chemo. Nhưng trên cuộc hành trình nầy nếu em gặp được may mắn có dịp ghép đúng tế bào tủy sống của 1 người vô danh trên thế giới thì việc điều trị sẽ đầy triển vọng .

Do đó mẹ của em, cả nhà của em, và tất cả thân nhân đều nhẩy vào một mặt trận mới. Đó là chiến dịch đi tìm người hiến máu liên quan đến việc cứu bệnh nhân ung thư máu .

Hoa Kỳ có cả ngàn bệnh nhân trong danh sách chờ phép lạ. Cũng tại Mỹ có hàng triệu người đã đồng ý ghi danh cho máu liên quan đến bệnh này. Tiếc thay, bệnh nhân Á Châu vốn hy vọng nhiều ở người Châu Á thì dân Việt Nam ta có rất ít người ghi danh.

Một thoáng y khoa

Thống kê cho biết tại Hoa Kỳ có 7 triệu người ghi danh đồng ý sẽ hiến máu hoặc tủy cho người bệnh. Nhưng không phải cho máu thông thường. Hai người có những dữ kiện máu và tủy giống nhau là chuyện hiếm có. Khi phát giác ra mầm bệnh, các con số thần bí của y khoa ghi nhận ám số riêng của bệnh nhân và lập tức lên máy điện toán để dò xem có ai trùng hợp trong số người đã tình nguyện.

Michelle được đưa dữ kiện lên dò một lượt với 7 triệu người ghi danh. Chờ đợi kết quả hết sức xúc động và thường rất ít hy vọng. Đúng như vậy, trong số hàng tỉ người sống trên mặt đất chỉ có 7 triệu người ghi danh.Và trong 7 triệu này không có ai trùng hợp với máu huyết của Michell. Một người nào đó đang ở nơi nào có những dữ kiện trùng hợp nhưng lại chưa ghi danh. Vì vậy tên của cô chuyển qua danh sách 6 ngàn người ngồi chờ.

Thực sự trong nhiều năm qua, cũng đã có hàng chục ngàn người đã gặp phép lạ. Bị phát giác ra căn bệnh nầy, lên máy gặp ngay quý nhân ở chân trời. Liên lạc và thuyết phục lại, người ta chịu mất công nhận lời chính thức là mình sống lại cuộc đời mới.

Ngay tại San Jose, đứa bé Việt Nam 14 tháng tuổi con Bác sĩ Đỗ Lâm đã bị ung thư máu. May mắn thay, từ tiểu bang Washington, ông cảnh sát, trong danh sách có điều kiện trùng hợp. Đứa bé được cứu sống bây giờ 7 tuổi do ông cảnh sát to lớn xa lạ đã tái tạo một mầm sống từ đất chết.

Theo khoa học, sác xuất trùng hợp khá cao nếu cùng chung sắc tộc. Vì vậy rất cần có thêm người Việt Nam và Á Châu vào danh sách tình nguyện. Người Việt tại Hoa Kỳ theo tỷ lệ phải có con số ghi danh là 15,000 ngàn. Nhưng hiện nay mới có 8 ngàn người gốc Việt ghi danh.

Thêm người Việt Nam trong danh sách, hy vọng của Michelle cũng cao hơn. Tuy nhiên dù sao cũng vẫn cần phép lạ. Phép lạ không có tỷ lệ.

Chắc chắn Michelle biết rằng em sẽ chỉ còn trông cậy vào Chemo để chiến đấu với cuộc đời. Năm mươi , năm mươi. Cả em và mẹ em đều nhất quyết dành phần đời còn lại cho cuộc chiến đấu sinh tử. Dù cho số người ghi danh tăng thêm nhưng duyên mới chưa đến thì cũng tạo cơ may cho người khác. Mỗi khi có thêm 100 người hay 1 ngàn người ghi danh vào danh sách mới là lại có một vài người trong danh sách chờ đợi được trúng số. Và hy vọng rằng thông tin này góp phần nhỏ bé vào một nhu cầu vĩ đại của nhân loại.

Project Michelle

Đó là lý do chiến dịch Michelle ra đời. Nói cách văn vẻ và mạnh mẽ hơn ta có thể gọi là chiến dịch cứu mạng Michelle (Save Michelle life).

Cố gắng vận động cho nhiều người Việt nam ghi danh tham dự.

Nếu đang ở các nước trên thế giới rất có thể đến các nhà thương địa phương hỏi thăm, thế nào cũng có tin tức. Hãy ghi danh và thử nghiệm. Rất giản dị và rất căn bản. Bước đầu chỉ là lấy một chút nước miếng để thử nghiệm. Tên tuổi và dữ kiện sẽ đưa về Hoa Kỳ. Mỗi ngày đều có bệnh nhân mới lên máy để dò tìm. Nếu mà trúng người, sẽ được khám nghiệm rồi bảo trợ du lịch qua Hoa Kỳ. Làm 1 chuyến Mỹ du, cứu đựơc một người, mà công việc chỉ là lấy máu trong giây phút.

Vấn đề chính là Trời có cho ta cái duyên để làm phúc hay không.

Rất tiếc tại Việt Nam hiện nay thì mới có văn phòng tại Thái Lan. Có thể trong tương lai gần sẽ mở tại Sài Gòn. Ngay tại Hoa Kỳ và trên toàn thế giới, nếu độc giả có lòng, ở đâu cũng có nhà thương. Nhà thương nào cũng có các văn phòng lập danh sách để chúng ta tình nguyện cho máu cứu người bị bệnh này. Muốn là được, chẳng có gì khó cả.

Nếu bạn từ 18 đến 60 tuổi, không có bệnh nan y đều được thử để ghi tên vào danh sách. Khi có đúng người cần, việc nầy cũng như là 2 bên cùng trúng số. Bệnh nhân trúng số vì có qúy nhân phù trợ. Người ghi danh trúng so ãvì trời giao cho nhiệm vụ cứu người.

Chỉ cần 1 chút nước miếng thử nghiệm khi ghi danh, rồi đến khi thực sự cần mới lên đường đi lấy chút máu hay 1 chút tủy sống trong chốc lát. Bạn trở thành anh hùng cải tử hoàn sinh cho Michell hay 1 người nào khác trong số 6,000 người đang chờ đợi sống chết từng ngày.

Xin bà bầu cuống rún

Trên con đường giúp cho việc làm sống lại 1 người sắp chết, chẳng phải chỉ có chúng ta mới làm được mà ngay đứa bé chưa ra đời cũng có thể trở thành Thượng đế. Tại ngân hàng y khoa Hoa Kỳ, người ta lưu trữ cuống rún của trẻ sơ sinh mới cắt rời từ bà mẹ.

Trong cuống rún này có những mầm non của tế bào rất hữu hiệu dành cho

bệnh nhân chờ đợi sự may mắn trùng hợp. Vì vậy nếu các bà mẹ có bầu cho bác sĩ biết bà tình nguyện tặng cuống rún để phục vụ cho y khoa, bà sẽ là người mở đường cho đứa con chưa ra đời của bà trở thành ân nhân của người bệnh nan y.

Đúng như vậy, cuốn rún vốn là tài sản của đứa bé nhưng không ai lưu ý thìsẽ bỏ đi , nếu trao tặng sẽ thành phép lạ.

Bà mẹ Việt Nam đọc tin nầy, bà có muốn khai sinh 1 đứa bé vừa ra đời đã trở thành thiên thần làm sống lại 1 người khác. Người khác đó có thể là Michelle.

Mẹ khóc con khóc

Tin tức đưa lên truyền hình của Việt TV, câu chuyện của Michelle đã làm cho ông quay phim kiêm đạo diễn Lại đức Hùng phải bỏ máy lau nước mắt. Trên TV Việt Nam của CaliToday bà mẹ Flower Lady khóc quá chừng làm đứa con vừa khóc theo vừa dỗ dành cho mẹ. Qua hình ảnh ghi nhận được, khán giả tưởng chừng chính bà mẹ là nạn nhân và cô gái là người an ủi. Chị Hoàng mộng Thu trải qua 12 năm vào tù ra khám chỉ để thăm những đứa trẻ trong trại giáo hóa thiếu tình thương. Flower Lady đem tình thương reo rắc khắp mọi nơi. Ngày nay, không ngờ mẹ con lại ôm nhau khóc để kêu gọi tình thương của mọi người. Cháu Michelle chịu đựng Chemo rất nặng nên rồi đây sắc diện sẽ thay đổi. Tóc sẽ không còn đen mướt như xưa. Mặt sẽ không còn sinh khí mạnh mẽ như ngày nào. Tình yêu đến, tình yêu đi nào ai biết, nhưng em cương quyết giữ vững một tấm lòng kiên trì chiến đấu với số mệnh mong manh của cuộc đời. Michelle nói rằng em vẫn còn có được 50% chiến thắng. Em chiến đấu cho sinh mạng của em và em chiến đấu cho niềm hy vọng của me.

Chúng tôi ngồi coi cảnh thu hình câu chuyện trên TV.

Mẹ Thu ngồi kể lể mà nước mắt chan hòa. Con gái Michelle nhìn mẹ như một đứa bé thơ ngây lạ lẫm lần đầu thấy mẹ khóc. Trên khuôn mặt trẻ thơ căng thẳng, nước mắt của em cũng ngập ngừng chẩy ra.

Nước mắt con, nước mắt mẹ. Nước mắt của Hoa Tình Thương, của Flower Lady một thời rộn rã tiếng cười.

Giao Chỉ, San Jose

irccsj@yahoo.com

Liên lạc Hoàng mộng Thu: HOANGMONGTHU@AOL.COM

Ai muốn giúp đỡ xin gọi cho cô Jenny Tran ở số miễn phí 1.800.593.6667 để biết thêm chi tiết về việc ghi danh và thử nghiệm tại các địa phương

Hoặc có thể đến chùa An Lạc tại San Jose:

1647 E. San Fernando Street
San Jose, CA 95116.
Tel. (408) 254-1710.


vào ngày Chủ Nhật 19 tháng 8 năm 2007 từ 10 giờ sáng đến 3 giờ chiều
để ghi danh và lấy nước miếng thử nghiệm.

Sau đây là thư của Michelle thông báo tin tức bằng Anh ngữ:

I think this will be useful in the future.

These facts and figures have been taken from National Marrow Donor Program (NMDP) and the Asian American Donor Program.

REGISTERED: – A total of 6,637,346 individuals are registered on the US Marrow Registry. – There are about 10 million total worldwide. – As of June 30, 2007, there are:- 7,914 (.1%) Vietnamese registered – 3,200 registered (.05%) in the “Other Southeast Asian” group – this includes Thais, Laosians, Indonesians, Cambodians etc. – 506,068 (7.6%) Asian Americans registered.
**There is a severe shortage of ethnic minorities on the registry.

TRANSPLANTS: – Since 1987, there have been: – 7 transplants for Vietnamese patients – 808 transplants for Asian Americans. – Over 23,400 patients have received Bone Marrow transplants with the assistance of the NMDP.

NO REGISTRY IN VIETNAM: Unfortunately, there isn’t a donor center in Vietnam. The closest country to Vietnam with a registry is Thailand. The Thai donor center information is: National Blood Centre, Thai Red Cross Society


1871 Henri Dunant Road, Pathumwan 10330 Bangkok, Thailand

TEL # +66-2-255-6925

Info on Chemo and 1st Marrow Drive

Round 4 was completed without a hitch! I think a lot of this has to do with the fact that my oncologist reduced my chemo dosage by 25% for Round 4. The chemo not only kills off my cancer cells, but also destroys my healthy blood cells (white blood cells, red blood cells and platelets). Unfortunately, you can't pick and choose.

For most people receiving chemo, they will start to see their blood cell counts go up in a week or two after chemo treatment. However, my recovery has been a bit unusual. During Round 1, 2 & 3, the chemo was taking an extra heavy toll on my body. My white blood cell counts were unusually low for an extended period of time - like almost 4 weeks after each round. When your white blood cells are low (aka "neutropenic") you are extremely susceptible to getting sick. Unfortunately, this was what lead to a couple of nasty infections and fevers of 104 degrees over the last couple of months. My immune system could not fight off any illness.

Oncologists have a very difficult job. They have to give you enough chemo (poison) to kill off your cancer cells, but not too much to where your immune system is completely destroyed. This is why chemotherapy is an extremely dangerous balancing act. You can die from something as little as a cold when your immune system is down.

For Round 4, my oncologist reduced my dosage by 25% because we realized I am proned to getting infections. So far, my white blood cells aren't too low which means my immune system is still able to protect me. Thankfully, I was able to attend the 1st Project Michelle Bone Marrow Drive at the Fremont Thai Temple. We got 41 people registered!!! Carol said that AADP has been to the Thai temple in the past and only got 4-5 people registered. My personal goal was 30 people, so I am very pleased. We have 4 more drives this upcoming weekend. Please check out the calendar for more information!!!

Be Proactive

*Here's a picture of me on my laptop with my last bag of chemo during Round 4. Thankfully I have internet connection at the hospital. I keep myself busy by answering emails, posting journal entries, coordinating bone marrow drives and reading the motivating messages you have sent to me. Time flies. Thank you!

It is easy to take the backseat when you are receiving your treatment because you think there are plenty of doctors and nurses to take care of you. However, these people have many other patients and may only get to see you for about 10 minutes a day. I've learned that it is extremely important to stay on top of your treatment because you are the one that is dealing with everything all of the time. Who knows your body better than yourself?? Here are a few things that I try to do:

1. When you get admitted into the hospital, ask the nurse/doctor to give you a print out of all of the medication you will be taking. That way you can have a checklist to make sure you are taking the correct meds and dosages. Don't take medicines blindly without understanding what each one is for. There have been a few times when I was given the wrong dosage or wrong medicine. Once I took a medicine that I had never taken before because the nurse said I should take it. I should have declined, but I took it and it gave me the worst stomachache - I have learned my lesson!

2. Memorize all of the medications you are allergic to. Doctors and nurses will frequently ask you about this, so it is helpful to know them offhand or have a list in your wallet/purse that you can quickly refer to.

3. If you know that you occasionally get specific symptoms that require certain medication ask your doctor to add the medication on your chart as "PRN" a.k.a. "take as needed." That way, if the symptom arises (e.g. stomachache, headache, mouth sores, etc.), you don't have to wait for your doctor to prescribe the medicine or for the pharmacy to prepare it. This can take hours before you finally get the medicine. As a "PRN" medication, the nurse can give you the medicine as soon as you request it.

4. Make notes about your different nurses. Each nurse does things a little differently, so feel free to ask them to do things a certain way if it makes you more comfortable. Also, if you EVER feel uncomfortable with a nurse do not hesitate to ask to switch. This is your life on the line. Plus all of the nurses I have talked to say that you should feel comfortable to do this. Personally I am horrible at confrontations, but there are times that you need to stand up for yourself.

5. Feel free to ask any questions that are on your mind. I like to make a list of questions so when my doctor comes in for his daily visit I can write down his answers. It is easy to forget things when you have chemo brain.

6. Keep all of your medical receipts for your records. Also, you may be able to get some financial aid and reimbursement for some of your medical costs. Visit the Leukemia & Lymphoma Society website for more details.

7. Get a daily screenshot of your blood results. This makes it easy to track your counts on your own.

8. On the day you are getting admitted into the hospital, call 30 minutes before you are suppose to arrive to see if your room is ready. Even if Hospital Admissions tells you to come at a certain time, it is good to double check especially because it is hard to predict exactly when the patient before you will get discharged.

9. When you an outpatient receiving blood transfusions, it is also good to call the infusion clinic ahead of time to make sure the blood has arrived from the blood bank. A quick call can save you a couple of hours waiting for the blood to arrive.

10. The most important thing I've learned is that as a patient you can actively participate in your own treatment. My doctors and nurses let me help make important decisions like what medications I should take, whether I should receive blood transfusions, when I should get discharged from the hospital, etc. This is very empowering because my medical team really takes my feelings into consideration. Patients should feel completely comfortable expressing their opinion/thoughts to their medical team.

Common Misconceptions

I am on my 3rd day in the hospital. My doctor noticed that my skin is a little red today so he has me on IV Benadryl (25mg) every 6 hrs. I get very drowsy from it (both in pill and IV form) . For other sensitive people, it is good to ask your nurse to inject the drug slowly so your body can adjust to it. Sometimes if the nurse pushes the drug in quickly it hits me hard and I get choked up/paranoid because the drug makes me feel totally different. One minute you are alert, the next minute you feel like a zombie. It also helps to have a conversation while you get the injection to keep you distracted.

Today I wanted to talk about common misconceptions regarding the Bone Marrow Donor process. People have been asking a lot of great questions and I would like to try and clarify.

Quick Clarification
1. To register to become a donor, all you need to do is give a cotton swab sample of the inside of your cheek. They do NOT draw any blood to enter you into the National Marrow database. Basically, you use a Q-tip to rub the inside of your cheek the same way you would use the Q-tip to clean your ears. Your cheek cells will get onto the Q-tip. The doctor is looking for your cheek cells NOT your saliva.

2. Your Q-tip sample will then get tested for your tissue types. **One very common misconception is that your blood type must match the patient's. This is not true.** To perform a bone marrow transplant the patient's tissue type must match the donor's tissue type. Each person has many different tissue markers. Ideally, doctors prefer 6 different tissue markers between a donor and a patient to match before a bone marrow transplant (BMT) is performed.

Nowadays, doctors go even further by trying to match 10 tissue marker types. This reduces the chance of the patient's body rejecting the donor's stem cells. Your blood type is completely irrelevant.

3. When you get entered into the database you will be available for anyone who is looking for a donor. If you match someone, you will go in for more testing to make sure you are a good match. If the doctor selects you, you will get to decide if you still want to go through the process. Please note that you may be the only match that patient has. If you decline, the person will most likely die. It is important to stay committed as a donor.

4. You can donate more than once. So if you match both me and another patient, you can donate to both. I will not lose my opportunity for your donation.

5. There are two different ways to extract stem cells from a donor. Stem cells are what makes your blood cells. They live in your bone marrow. In Leukemia patients, our stem cells make cancer cells and do not produce healthy blood cells. As a result, we need a transplant from someone who has stem cells that will produce healthy blood cells.

5a. The first procedure is called the marrow donation process. First the donor will receive some pain medication. Next the donor will go into surgery to remove a core piece of marrow which will then be transplanted into the patient. The donor can expect to have pain that is comparable to "falling on your tail bone on ice." The pain/ache can last 1-2 days to sometimes a week depending on the person, but the procedure is normally performed outpatient. Back in the days, this was the only way to give the patient stem cells. However, today this is only performed less than 30% of the time.

5b. Currently, over 70% of the time, the doctor performs a process called Peripheral Blood Stem Cell (PBSC) Donation. This is where the doctor collects stem cells in your blood. First, you will be given daily shots of medicine for 5 days to make your body produce extra stem cells. This will cause the extra stem cells to leave your bone marrow and enter your blood stream. Then the doctor will collect your blood to extract the stem cells. They will have a machine that separate the stem cells from the blood. Once the stem cells have been collected, the rest of your blood will be transfused back into you. The procedure is similar to when you donate blood. This is a much less invasive than the marrow donation process.

6. One last type of transplant is called a cord blood transplant. This is the latest technology for stem cell transplants. When a woman has a baby, the doctor must throw away the umbilical cord and placenta after delivery. However, there are healthy stem cells in the umbilical cord and placenta. Women can agree to donate this waste and it will be entered into the National Marrow database. If there is a match, the doctor can extract the stem cells from these parts to transfuse into the Leukemia patients body. This does not harm the mother or the baby in any way.

7. There is no long term side effects for the donor. You will not get AIDS, hepatitis, etc. because the instrument used is sterile and bone marrow is being removed from you, not being given to you by someone else so there is no transmission of any weird diseases.

8. There is no cost to the donor. Everything is paid for by the patient and his/her medical insurance.

For more information please visit the NMDP website.

Round 4, here I come!

*This is a picture of my best friend (in the whole wide world) Mabel and me. We spent all of yesterday together just hanging out...good times. Can't wait for this year's football season to start! We already have season tickets (hoping I can go). Go bears!!


I'm getting admitted into the hospital today at 2:30pm. Got my bags all packed and I'm ready to go. I feel very healthy so I'm hoping that I can swoop in and swoop out of the hospital. Ideally I would only stay for 5 days, but something might come up (e.g. fever, infection, pneumonia, etc.) that would keep me in the hospital. I stayed an extra 6 days during Round 3 because of a skin infection.

The chemo regimen I'm on is called the "1-3-5" of High-dose Ara-C (aka Cytarabine). Basically I get chemo on the 1st, 3rd, and 5th day I'm in the hospital. More specifically, this means:
Step 1. Start first bag of chemo 1 "Dose 1" (each bag runs for 3 hrs)
Step 2. 12 hours after Dose 1 began, start Dose 2
Step 3. 36 hours after Dose 2 began, start Dose 3
Step 4. 12 hours after Dose 3 began, start Dose 4
Step 5. 36 hours after Does 4 began, start Dose 5
Step 6. 12 hours after Does 6 began, start Dose 6

Example:
1. Mon, 8/6/07 start Dose 1 at 7am, ends at 10am
2. Mon, 8/6/07 start Dose 2 at 7pm, ends at 10pm
*Tue, 8/7/07 - no chemo
3. Wed, 8/8/07 start Dose 3 at 7am, ends at 10am
4. Wed, 8/8/07 start Dose 4 at 7pm, ends at 10pm
*Thur, 8/9/07 - no chemo
5. Fri, 8/10/07 start Dose 5 at 7am, ends at 10am
6. Fri, 8/10/07 start Dose 6 at 7pm, ends at 10pm

Patients can get very nauseous or tired from the chemo, but luckily I have not had any real side effects from the chemo drugs (knock on wood). Plus you get a lot of "pre-meds" which are medicines that you take before you start chemo to prevent any side effects. You also receive eye drops every 6 hours to protect your eyes from infection. Ara-C which can leak out of the tear ducts in your eyes and cause an eye infection called conjunctivitis. I basically can't wear contacts lenses and I avoid rubbing my eyes during this period.

For me, the toughest thing about getting chemo is the timing of each dose. If you start your 1st chemo bag at 3pm in the afternoon, that means your next one will be at 3am. It is hard to get rest when your nurse is coming in and out during the middle of the night. I learned the hard way during Round 2 when my chemo started at 4am. It is important to ask your nurse to set the treatment on a reasonable schedule. I hope this time we can start at 7pm tonight.

If you don't experience any side effects, chemo is fairly easy...it's the weeks after the chemo that are tough.

Wish me luck! I hope (Che)Mo gives Leuk a good beating this round!