All We Need is ONE More Signature….PLEASE HELP!!
Posted by Matthew in Matthew's Daily Blog on August 31st, 2010
Health Update: Eleven months (346 days) post-transplant -Last week I had from my 3rd of 6 weekly IV infusions of a new medication to help fight GVH (the new stem cells from the bone marrow transplant attacking my own cells). The medication is Basiliximab and seems to be doing something as the skin on my lips is changing. It looks like I am wearing bright pink lip liner. My eyes are still dry; some days they don’t bother me and others it feels like I have sand in them. So who knows, at least the medication is changing something in my body. Another weird thing is that this time I felt VERY TIRED for two days following my infusion. I hope this is just from working out at the gym and not a side effect of the medicine.
On a personal note, two very close friends of mine both just lost loved ones in the past two weeks. There are no words I can say to make their pain go away, but I hope we can pray for them that their loved ones are at rest. Also, another very close friend of mine underwent brain surgery due to a brain aneurysm. I do not know the full details about what happened but if you can, please pray for a speedy recover.
Call for HELP/ACTION!!! Please help out by passing this message along to your friends and family.
The California legislature recently passed the Michelle Maykin Memorial Donation Protection Act (SB 1304), which is a great victory for its supporters who told their state representatives of this Act’s importance. Now, we need your help in asking Governor Schwarzenegger to sign this bill, which would require all California employers to allow paid leave to anybody who donates their marrow. Until now, work obligations or inability to obtain the necessary time off were one of the largest causes of donors being unavailable to give marrow. The legislation includes the following provisions:
- All California employers will be required to grant an employee a leave of absence up to five days to donate their marrow to another person
- Any period of time taken from work to donate marrow will not be considered as a break in continuous service for the purpose of his or her right to salary adjustments, sick leave, vacation, annual leave, or seniority.
- During any period an employee takes leave to donate, the employer shall maintain and pay for coverage under a group health plan for the full duration of leave.
- An employer may require an employee to take up to five days of earned but unused sick or vacation leave for bone marrow donations, unless doing so would violate the provisions of any applicable collective bargaining agreement.
Please tell the Governor to quickly sign this important legislation, as for every person who called to donate but are unable to, there is a patient who is less likely to receive a life saving transplant. You can send an email to him at http://gov.ca.gov/interact#email or contact him at:
Governor Arnold Schwarzenegger
State Capitol Building
Sacramento, CA 95814
Phone: 916-445-2841
Fax: 916-558-3160
Below are some possible talking points that you can include in your letter to the governor, This chanc but you should also keep it personal. Tell the Governor what marrow donation has meant in your life and why you believe that this legislation is important. This chance to share your story is a very convincing message to the Governor.
Talking points:
- I support the Michelle Maykin Memorial Donation Protection Act, SB 1304, because it will reduce barriers to marrow and organ transplantation by increasing the likelihood that a matched donor is able to donate.
- Each year, 10,000 people are diagnosed with life-threatening diseases such as leukemia and lymphoma which can be treated with a bone marrow transplant.
- Many patients with blood-related diseases search the national Registry of adult volunteer marrow donors to find an unrelated matching donor for transplant. An unrelated transplant may be their best and only hope for a cure, as most people do not have a matching donor in their family.
- Matched marrow donors are often required to miss a few days of work to complete their donation and SB 1304 would make the decision to donate easier by eliminating the potential financial burden caused by missing work.
Marian Days 2010 in Carthage, Missouri - A SUCCESS!!!!
Posted by Matthew in Matthew's Daily Blog on August 20th, 2010
Marian Days, Carthage, Missouri
Health Update: Eleven months (335 days) post-transplant -Yesterday I had from my 2nd of 6 weekly IV infusions of a new medication to help fight GVH (the new stem cells from the bone marrow transplant attacking my own cells). The medication is Basiliximab and isn’t too bad. The worst part is getting a new IV line started each time I go. Needles hurt more and more with 
each stick. My dry eyes are getting a little better but the sores in my mouth are still the same when I eat. A new problem that is developing for me is sore ankles. There are days I can walk fine and others where I hobble around like I need a cane. Both sides are bothersome so I am switching shoes to see if it helps. I asked my doctor about my ankles and they said it could be due to the fact that I am almost at the point where I have osteoporosis. The previous bone density test wasn’t so great so they are working on getting me the proper treatment for my bones. Until then we can sort things out with my insurance, calcium pills, high dose vitamin D, and more milk it is.
Last week I had the opportunity to visit Carthage, Missouri, to attend Marian Days (a festival and pilgrimage for Vietnamese American Roman Catholics) to help out with more bone marrow drives. In my previous blog post there was a PSA video up which aired all throughout the US. This was one of many advertising plans of Be The Match (NMDP), AADP, A3M, and Team Anh to get more exposure before we arrived in Missouri. The site was AMAZING. There were 80,000 – 100,000 Vietnamese people out there to honor the Virgin Mary and to meet other Vietnamese Catholics like themselves.
I had to drive through 3 states to get there.
Last year I was unable to attend the drive with AADP, A3M, and Team Anh since I was in the hospital. In 2009, they registered over 2,000 Vietnamese people into the national bone marrow registry. Out of those 2,000 registered, 14 were matches to patients this past year. AMAZING!!!!
Debbie, Tina, myself, and Annie
Due to last years great success, this year we had high hopes. The church provided us with a larger area to work with which had many more tables and chairs. In the evening, I was able to speak in front of a crowd of youths hoping to inspire them that they could make a difference and save a life registering. In addition, the weather was hot and humid, and we were all tired. But no one gave up as we kept working until 1 a.m. knowing that we could help save more lives. As a result of everyone’s hard work and dedication, we were able to register 1,681 new people in 3 ½ days this year. Hopefully more people will be called to donate and save lives from our efforts. GO TEAM!!!
Start of Procession Through Town
As I was walking along the mile long procession, it was very hot. THOUSANDS (Maybe 50,000) of people were marching behind the Virgin Mary statue through the small town of Carthage, Missouri. As we came to a corner, I noticed a crowd of people grabbing something as they walked by. There was a family that rigged up a water system (2 houses across from each other, up a pole), boiled the water to clean it, ran it through an ice batch to cool it, and handed out cups of water to the Vietnamese people walking by. The Carlton family has been doing this for over 10 years and it shows the support the town has for the Vietnamese community that come to Carthage every year.
To be able to feed the 80,000 - 100,000 people for 5 days, restaurants were set up under huge tents. Here I saw a line of people making fresh bánh cuốn, which I have never seen before. It kind of looked like they were making crepes. Walking around this area, I felt like I was back in Vietnam.
One person cleaning the chicken, and the other two were frying chicken and french fries. Not quite V ietnamese food, but smelled delish.
A shot of Saturday night mass and the sea of people. It was incredible.
The Passing of a SUPERHERO… RIP Barry Pham
Posted by Matthew in Matthew's Daily Blog on August 5th, 2010
Health Update: Ten months (321 days) post-transplant - my eyes are still giving me problems. Left eye is still VERY dry but the GenTeal gel is doing wonders. What is weird is my right eye is always running with tears. Something is all screwed up with my tear glands.
Barry Pham, April 9, 2009 - July 5, 2010
So as I have been away in Omaha, Nebraska, for orientation for pharmacy school, I feel so lucky to be here- alive. Yesterday after working out and taking an exhausting run, I sat on the sidewalk under a tree just to take everything in. The cool air was blowing and you could hear kids in the background laughing and playing. You could feel the peace in the air. If only Barry Pham could have lived and experience a fraction of my life, but unfortunately after a long a hard battle with acute biphenotypic leukemia, Barry passed today. Barry Pham was a trooper and fought one infection after another. But at least he is at rest and no longer suffering form the pain of cancer.
Team Matthew supporting Barry at one of his drives, Jan 31, 2010.
Team Matthew had the wonderful opportunity to help out Barry and his family back on January 31, 2010, as we helped out at a bone marrow drive in Barry’s honor. I remember it being a residential club house tucked away within the streets. I thought to myself, “how are people going to find this place?” Little did I know, by the time the day was over, we had more than 100 people come in and register. That just shows you the love and support Barry and his family had by their side. Too bad I never got to meet the little fella as he was too sick that day to be out in public. To read more on Barry’s heroic battle, please visit www.savebarry.org .
The battle is never over as this week Marian Days is going on and NMDP, A3M, AADP, Team Anh, and Team Matthew will be out in Carthage, Missouri in hopes to finding a matching marrow donor for cancer patients in need. Last year was a success with over 2000 new registered donors and we hope this year will be even better. You can read more on the event HERE.
I also had the pleasure of doing a public service announcement for this event with Mr. Nam Loc. You can view the PSA as well as the English translation below.
“This is Nam Loc. What if there was a way to heal someone? To have the power to stop someone from dying. There is a way. And it’s you.
When you join the Be The Match marrow registry, you give patients like me, Matthew Nguyen, a chance to overcome diseases like leukemia. Patients are more likely to match a donor from their own race. But Vietnamese are less than 1% of the registry of millions.
Join the Be The Match Registry. Call 800-493-6667 to learn more.”
Message of Inspiration - Tour de France 2010
Posted by Matthew in Matthew's Daily Blog on July 27th, 2010
Health Update: Ten months (311 days) post-transplant - Everything is looking in tip top shape except for my graft vs host problems. My body is still rejecting my new stem cells and I am still experience mouth sores when I eat as well as very severe dry eyes. Dr recommended using Gen Teal eye gel in addition to Refresh eye drops and lacrilube and it has done wonders. I went from putting eye drops in every 30 minutes to putting this gel in maybe every 1 hours. May not sound like much of an improvement but it is. Not so bad eh?!?
I am very fortunate to have options regarding pharmacy school this year. The original school which I attended in 2006-2007, which was in Virginia, was gracious enough to allow me to return to school but would have to start all over (even though I completed one year already). In addition, they offered to cover my tuition for the first year since I already paid when I was there (VERY nice of them). However, I did not feel comfortable being so far away from home quite so fast. So I applied to a few other pharmacy schools and was accepted into the University of the Pacific (UOP) and the University of Southern Nevada (USN), which are both 3-year accelerated programs- exactly like the program I was at in Virginia. I have been DREAMING of going to these two schools for the past 6 years and here is my chance. BUT, I felt like it was still too “risky” for me to move away from home even though they are both fairly close to home. I was however very lucky to get into Creighton University in Omaha, Nebraska and decided to attend this program.
Appropriate sign as I was out with my Pharmacy classmates in the Old Market.
WAIT…..before you say “What?!? Nebraska? Isn’t that further from home?”, this is the ONLY online professional pharmacy program in the US. I get to do everything online at home with my family and stay close to my doctors. I couldn’t have asked for more. The only down side was that this was a 4-year program. Either way, this was the BEST decision for my current situation.
I am currently in Omaha, Nebraska, starting my pharmacy career over again. I will be here for 2 weeks for orientation. After that, everything else will be completed at home in CA. I am adjusting to being away from home but I am enjoying my time here so far.
On a different note, with the Tour de France going on (I’m big on cycling), I sent in a message for fun not expecting too much from the Livestrong Foundation. I got word yesterday that my message was selected and was printed on the roads of France for the riders to see while they are cycling along the course. I am so excited about this I am all giddy like a little kid. Below is my message to the riders in case they felt like giving up on their tour…I feel a new Team Matthew shirt coming on.
Is this Really Happening??!?!? Champions!!!!
Posted by Matthew in Matthew's Daily Blog on July 22nd, 2010
Chloe and I with the NBA Championship trophy
Health Update: Ten months (306 days) post-transplant - Blood tests are coming back normal for me. The past few months it has been on the low side of normal, but now they are much better. Two weeks ago I paid a visit to an ophthalmologist to get my eyes checked out since I have been having problems with my left eye. The Dr. did a full exam on my eyes, dilated them, even performed the Schirmer’s tear test where they placed strips of paper in my eyes for 5 minutes (which was very uncomfortable), and determined that my left eye is producing a low amount of tears.
- 1. Normal which is =>15 mm wetting of the paper after 5 minutes.
- 2. Mild which is 14-9 mm wetting of the paper after 5 minutes.
- 3. Moderate which is 8-4 mm wetting of the paper after 5 minutes.
- 4. Severe which is <4 mm wetting of the paper after 5 minutes.
My right eye produced 20mm of wetting, and my left 7. The Dr. prescribed me Restasis eye drops to help my eyes produce more tears. So far it stings each time I use it. Hopefully my eyes get used to this medication and the stinging stops. Now I also have to put in saline eye drops to help soothe my left eye every hour. If I don’t, it gets so dry that each time I blink, you can see my eye lids sticking to each other and my vision gets blurry. It gets pretty painful too. I guess I am lucky only my left eye is affected otherwise I would be in really big trouble.
Yesterday I went to a second ophthalmologist to get a second opinion. This time they decided to put plugs in my lower tear duct drains in hopes it will keep the tears in my eye longer. You can watch it being done HERE on a video I found online. It was a uncomfortable when they put it in and I can still feel it. It feels like I have morning eye crust in my eye, but all day long. Very annoying. Hopefully I get used to it and it helps alleviate the dryness.
As many know, I am a HUGE LA Lakers fan. Recently I had the great opportunity to hang out with Ron Artest from the Lakers. We were picked from his Twitter contest to hang out with him at the Honda Center where Aventura was performing. I had been sending messages to Ron for a few days trying to win and heard nothing back. The evening of the event, 1 hour before it started, he chose me. Chloe and I were shopping in Target when I got the message and I turned to her and said, “WE WON!! Ron Artest chose us. Lets go NOW!!!!” She thought I was joking and kept shopping. Once I started running towards the exit she started to realize I wasn’t joking.
Ron Artest gave us all access passes and hung out with him backstage. He was going to do a surprise performance of his single “Champions” for the fans. Artest was a really nice guy. He wanted me to film his performance so the stage crew let me stand as close to the stage as possible. It all went by so fast we really couldn’t fathom that it was really happening. All in all, it was a great experience. Check out some videos HERE.
Chloe and I backstage with Ron Artest and the Worldwide Wariers after their amazing performance of "Champions"
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