Hopeful

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

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

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

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

Final Dressing Change and Blood Draw

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

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

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

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

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

Match Maykin

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

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

Here are my results for today:

NMDP Registry Potential Adult Donors:

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

NMDP Registry Potential Cord Blood Units:

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

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

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

How'd you catch Leukemia?

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

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

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

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

Anthony has left us

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

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

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

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

She will exhale

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

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

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

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

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

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

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

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

A letter from a Volunteer

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

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

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

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