TeamMatthew.org Blogs

Health Update: Nine months (275 days) post transplant, I recently had my final spinal tap (lumbar puncture) procedure last week. Each time they also give me a little dose of chemo just to make sure. It is the last of my 6 treatments my physician wanted me to go through. My 5th one I experienced the spinal tap headaches. I toughed it out for 3 whole weeks with major migraines and it eventually went away. This time after a few days of horrible headaches I called my physician right away to schedule a blood patch procedure. With this procedure, they injected 10cc of my own blood right above the spot where they went it with the needle for the spinal tap, hoping to clot up the opening and seal it up. This would prevent any spinal fluid leaking out, and stopping the horrible headaches. After 5 minutes of this procedure, my headaches were gone. AMAZING!!! I now have a huge lump on my back where the blood was injected but it has decreased in size after a few days. Also, due to the GVH I am still experiencing in my mouth, my physician is trying new medication to treat it. It is an IV infusion so I made two trips to City of Hope last week. So far, my mouth is getting better. Let’s hope this works.

Circus Birthday Cake

Three weeks ago I was able to travel up to San Jose, CA for my nephews 1st birthday. Connor had a blast and here a few pictures from the fun filled day.

The Big Birthday Boy

While I was up in San Jose, I had the pleasure to marry my two good friends, Paul and Tea. Paul is one of my best friends and I have known him since 6th grade, that’s about 15 years. I have known Tea since high school (12 years). I was quite nervous because I was the officiant for the wedding. Good thing everything went well. Here are a few pictures from their wedding.

Newlyweds are HUGE Simpsons fans

The Bride and Groom

Health Update: Eight months (248 days), I am still experiencing GVH around my lips and in my mouth. When I eat I bubbles still form in my mouth which starts to hurt. They usually start forming after a few minutes of eating. Also, I can no longer stand ANY amount of spicy food or pepper because my mouth is so sensitive. It feels like pouring hot sauce on an open wound and it lasts for a while. So, basically it is painful now to eat. My docs at City of Hope are just changing my meds around to treat the GVH.

Two weeks ago my fiancé Tuyet (Chloe) and I attended City of Hope’s Annual Bone Marrow Transplant reunion. This time last year I still remember being confined to my hospital room as my mom was crying, wishing that we would be attending the BM Transplant Reunion next year. As I was resting in my hospital room, she wandered around the reunion and saw all of the patients, giving her hope we would get through our tough time. She also brought me back some ice cream, which I was not able to eat at the time.

2010 City of Hope Bone Marrow Transplant Reunion

One of my wonderful nurses from the 5th floor, Jenny.

Finally I had my turn to be at this event. I did not want to make a big deal out of it, but deep down I was SO EXCITED just to be standing there with the rest of the survivors. It was great seeing the nurses that helped take care of me while I spent half a year in the hospital. I did not recognize a few of them because I was not used to seeing their entire face. While in the hospital, all the nurses wore face masks to protect patients so all you really saw were their eyes. I met quite a few survivors who were on their 2^nd, 5^th, even 17^th year of transplant and still going strong. Even though my button only read “7 Months”, I was still excited to be out and about among others who have gone through the same things I have and understand the struggle we deal with everyday. Although I am doing well today, I still fear that I may relapse in the future. Sometimes I forget that it has only been a few months since my transplant because I want so badly to get back to my “normal” life. Everyone tells me to take it easy and not do too much, but I want to live life to the fullest and take advantage of all the time that I have. There isn’t a minute in the day where I am just sitting and doing nothing like I used to do. I am either working on remodeling my moms place, studying, or keeping busy with one of my many hobbies (photography, out meeting Lakers players, sports, etc). I don’t even have time to play video games (I used to play video games A LOT, hours on hours at a time). I no longer stay up til the wee hours of the night. I now sleep by 11pm and wake up by 730am. For those that know me, I used to be a night owl.

Overall, since I was able to overcome this battle with “Leuk” as Michelle Maykin used to say, I feel like I have a new purpose in life. No more “playing it safe.” I’ve led a rather careful life, scared to make mistakes, scared of change, scared of failure. Now that I know how precious life is and how quick it can end, I want to live my life and try new things. I want to cross things off my bucket list NOW. I want to enjoy things now, not “someday.” I feel like I sort of deserve to do what ever makes me happy (good things of course).  I’ve accepted the fact that I may not live the normal life span of a healthy adult due to my history of cancer. But that is not going to stop me, because I have cancer, cancer does not have me. My favorite proverb means even more to me now then it did 10 years ago when I first heard it.  “Sông có khúc, người có lúc,” like a river, life has many bends and twist, you never know where it will take you.   Team Matthew has big plans this summer and hopefully we will be able to follow through with it. It is still in the planning stages, but I will keep everyone updated. Keep your fingers crossed.

Chick Hearn and I at the Staples Center

Health Update: Day 222 post transplant and I am still experiencing late GVH. I get blisters in my mouth everyday when I eat and it seems like a new one forms daily. Also, my lips are no longer dry and chapped, but looks like I am wearing lip liner. There is a slight white outline on my lips, sort of like new skin is forming. Another weird thing I am experiencing is the skin on the edges of my eyes.  They are turning a dark color like I have morning eye crust.  Seems like my skin is changing still. As far as my diabetes, I have been doing a better job controlling it with daily insulin shots and watching what I eat. With this extra careful effort, I have also finally put on some weight. I jumped from 125 lbs to 135 lbs in about 2 weeks. With my diabetes under control, all the nutrients from the foods I have been eating are being better absorbed by my body. As far as medication goes, I am still taking a ton of different meds. The steroids have made my face retain water and l now have puffy cheeks. Last week I got a cold but am feeling  much better now.

One year ago, April 27, 2009, showing my Laker love in the halls of the 5th floor at City of Hope Hospital

So it is amazing how fast time flies when you look back and recap the year. Yesterday, April 27, 2010, I was fortunate enough to go to a Lakers Playoff game against the Oklahoma Thunder at the Staples Center.  Thanks to Tuyet (Chloe) for getting the tickets for us to go. She is amazing. My cousin Andy (a hardcore Laker fan) flew in from out of town just for a day to go to the game with us, along with Tiffany, a local friend of ours. We arrived early, walked around, and took in the moment. It didn’t matter where we sat because the fact that I was sitting at a Lakers game was enough. Exactly one year ago,  on April 27, 2009, I was in the hospital at City of Hope by myself (family had to work, my one of day of the week I was alone) watching the Lakers on tv in the playoffs. From the picture above I took that night, I made sure to let everyone know on the 5^th floor that I was a Laker fan.

Tuyet and I at Lakers Round 1 Game 5 Playoff game against OKC Thunder, April 27, 2010.

Some people never knew that I was a Laker fan until recently. They thought it was because they started winning and I jumped the band wagon. But, I have been a fan ever since the Magic Johnson days. But the reason why the Lakers mean so much to me more so now is because while spending so much time in the hospital since 2007, they always gave me something to look forward to (second to my family and friends of course). Even though I was going through chemo and not feeling well, I knew that the Lakers would be on tv later that night and would cheer me up. If I couldn’t watch them on tv because the hospital didn’t get that channel, I would follow the score online or search to see if anyone was streaming the game live. It helped me make it through the week, and at that time, that was more than I could ask for.  The Lakers were always by my side (second to my family and Chloe of course). Like everything, they aren’t perfect. When they lose it kills us and drives us crazy. Tuyet and I have watched many games together since that was all I could do at the time. Without knowing it, the Lakers have made their way into our daily lives and will always be a part of our family. One year ago I NEVER IMAGINED I would be attending a Lakers playoff game today. But we all know anything is possible.

Last but not least, A3M Presents California LOL!

Dat Phan will be performing at this event. He has helped Team Matthew raise money and register marrow donors at a comedy event at Oklahoma University. Please come out and support.

***SAVING LIVES CAN BE FULL OF LAUGHTER!***
LAUGH OUT LOUD with DAT PHAN, champion of “Last Comic Standing” at “CALIFORNIA LOL” Comedy Jam 2010. A one-night only benefit also features today’s brightest and funniest Asian-American comics Danny Cho, Tina Kim, Paul Ogata, PK and Room To Improv.

Tickets on sale now!
$25 Pre-sale, $30 Door
Online: www.jaccc.org
Box Office: (213) 680-3700
10% Discount for groups 10 or more.

Asians for Miracle Marrow Matches is a California registered non-profit organization (A3M).

A3M’s mission is to improve the health and welfare of all people by providing education and assistance while facilitating prompt access to potential marrow and blood cell donors.

A3M’s goal is to serve patients in need of matching marrow donors who could potentially save their lives by coordinating donor recruitment drives to increase and diversify the Be the Match registry.

An empty seat next to Senator DeSaulnier, Megan Williams, and Debbie where Michelle should have been sitting.

Health Update: I am on day 208 post-transplant and things are still going well. A few weeks ago I experienced some late GVH in my mouth and on my lips. My mouth is very sensitive and develops bubbles in different places everyday. It is more annoying than anything. Also, the corner of my lips are very dry and I can only open my mouth so wide.  Last week I had a bone density test and results came back not so great. All my results came back in the range of -3, meaning I am frail and at risk of easily breaking bones if I fall. So, that means more meds. What’s new?!? My diabetes is also not under control so the endocrinologist is changing my regimen. Other than that, I am still breathing.

My case of meds I have to take

Yesterday I had the opportunity to travel up to Sacramento to meet with Megan Williams, mother of late Michelle Maykin, to support the Senate Bill 1304 – The Michelle Maykin Donation Protection Act (To provide job protection and paid leave for bone marrow donors and organ tissue donors in the event of the donor beig matched with a patient, as well as prohibit employer discrimination against any employee utilizes this leave.  As Senator Mark DeSaulnier, Megan, and Debbie from AADP presented the Bill to the committee, myself, along with many other supporters such as Huy Pham and James Nguyen (my friends and Team Matthew volunteers),  Dr Lam Do and his son Luke (Luke had a BM transplant a few years ago) just to name a few, went up and expressed our feelings on the bill. There was a GREAT SHOWING OF SUPPORT by many people. Although it was planned to be voted on today, there was one person missing from the committee so voting would have to be postponed until Monday morning. With our strong presence and the 15,000 signed petitions collected, hopefully this Bill will get passed.

After all of this, Senator DeSaulnier was nice enough to show us around the Capital building.  He took us into the California State Senate Chamber and Assembly room. This was a very rare opportunity for us all and we thank Senator DeSaulnier very much.

Some more good news, I recently found out that two patients looking for a bone marrow donor found matches and have undergone their bone marrow transplant. Barry Pham and Viet Lam are in our prayers and I hope they stay strong through this rough time.  Such exciting news!!!!!! They are living proof that WE CAN MAKE A DIFFERENCE and HAVE MADE A DIFFERENCE by signing up to become a bone marrow donor.  Keep up the great work.

Tears of Joy

A hug of relief

Megan continues to work after the hearing

A shot inside of the Capital Building

The California State Senate Chambers

The California Senate Assembly Room

The California Senate Assembly Room

The California State Senate Chambers

On the way to SFO airport, we stopped at Treasure Island to get a view of the Bay Bridge, Alcatraz Prison and San Francisco City