TeamMatthew.org Blogs

Health Update: Fun in the sun sounds great but not for me. 1 year and 10 months post bone marrow transplant I am experiencing GVH induced scleroderma. My skin is tightening up around my waist, lower back, rib cage, inner thighs, left thigh, jaw, and back armpit area. I cannot extend my arms all the way up, nor can I sit indian style. I cannot sit up out of bed, or twist my upper body to look behind over my shoulder. So this is very frustrating and painful as the skin is tough, tight, and raw from peeling. I am going to the hospital quite often now as one week I go to get 2 infusion of chemo drugs (Pentostatin and Basiliximab) to fight this schleroderma.  This is a 4-5 hour ordeal depending on how long I have to wait to get a bed/chair. In addition to these 2 chemo infusions, I am getting another treatment called photopheresis twice a week every two weeks. I will explain this in much detail later. This is treatment takes 4 hours as well and is in a different building from my other chemo infusions so there is more waiting. Sucks if I have them scheduled the same day because I am there at the hospital from 8am to 5pm. The following week I go once to get 1 infusion of just Basiliximab.  These treatments do not include my regular doctor visits I have every other week so I feel like I am at the hospital waaaaay too much. Did I mention it is an hour drive WITHOUT traffic each way?

Honorable mentions: Before I start to share with everyone my struggles and success in the past few weeks, I would like to mention a few individuals and their stories in no particular order.

Diep Dao, the person who saved my life. She is an amazing person as we have met and chatted again after our initial meeting last year. Her and her family (husband and parents) are great and it like I have another family. Well, Diep is saving another life this week and is donating her marrow AGAIN! She matched a young child which requires her direct marrow so she is flying back to Orange County to donate and save another life. To be a match once is AWESOME…to be a match a second time is A-M-A-Z-I-N-G!!! To Diep, you are my HERO and you will have saved 2 lives with your own body and many more as a doctor in the future.

Xuong, mother of 3 from Sacramento. She recently underwent a bone marrow transplant a few months back and is going through some tough times with graft vs host. She is an hour and a half away at the hospital all alone with limited English and battling it out. She calls me for support because we both have (had) AML.  Because I had a successful bone marrow transplant hearing my experiences and explaining things to her in Vietnamese helps her understand more about the disease, side effects, and comforts her.  Every time I am in a slump and feel bad because I cannot do this or I start to feel sorry for myself, I get a call from her. I hear her pain and agony because she is in so much pain from the graft vs host and misses her children dearly. It makes my problems seem meaningless and reminds me “it could always be worse.” I can only offer supporting words and tell her to keep fighting for herself and especially her children.  To Chi Xuong, you have already made it this far with being so lucky to find an unrelated marrow donor, don’t give up because it is all downhill from here.

Semi colon, a classmate of mine. Ok, her name is not semi colon, but I do not want to share her name quite yet without her permission. She recently found out she had a malignant tumor on her sigmoid colon (stage 3) and is undergoing chemotherapy right now. It seems cruel to call her semi colon because of this tumor but that is how she signs her name now. She is a very strong willed person and has kept a good attitude through all of this, hence the semi colon (;). To ; keep fighting with your positive attitude, that will be your greatest strength through it all.

There are many more out there I would like to talk about, but I will keep it short this week.

Back to “Fun in the Sun.” Chloe and her family recently had their pool redone late last year and I have had the responsibility to maintain the water and its chemistry. Being as anal as I am, I have been cleaning and checking the water to make sure it is crystal clear and safe to swim in. We had our first pool party July 4^th weekend and it was the first time anyone has gone swimming in it too. Many great friends from San Jose drove down to hang out a visit us and the pool party was great. Here are a few fun pictures from that day.

6:45am – This particular hospital visit I had a full days worth of appointments. Of course, this is how it is every week for me. As you can see, it started early with lots of traffic on each of the 3 freeways I had to drive on. Below I am almost to City of Hope Hospital and you can see it right behind the red Mini Cooper.  I used to stare out the window when Chloe was driving up to see me to see if I could spot her car on the freeway (I never was able to find her car).

8:00am – First things first at the hospital was to get my blood drawn for my doctors visit as well as for my photopheresis treatment. They want to ensure that I have enough white blood cells for them to work with.

9:30am - After waiting for the blood results to come back and for a bed to open up for me, I finally got into the infusion room. Some days I get a chair, some days a bed. I prefer a bed because of my aching back. This infusion entails Pentostatin and Basiliximab chemo. Since I do not any central lines in me, they have to start an IV every time. That is needle poke #2 for the day. I am given premeds before the infusion in case I react to the medication which includes benadryl and something else I do not remember. This knocks me out for a while which helps pass the time. Infusion takes approximately 3 hours from this point.

After the first two infusions I normally go see my doctor for follow up appointment. If he is running behind or I am running late, he comes in and sees me while I am getting my infusion to save time. This time he did and did not change any of my meds.

12:30pm – Lunch time. I grab a quick bite to eat and pass through the pharmacy to pick up my meds. The pic below is NOT my lunch, but just SOME of my prescriptions.

1:00pm - Photopheresis appointment. This is the new treatment that I am getting. It is in the adjacent building and is a little more isolated.

Here are some pictures of the machine itself. The procedure is to radiate my blood with UV rays instead of shining the light directly on my body which would harm me. The procedure is outline and explained HERE in more detail in you are interested. In a nutshell, this is how it works

Step 4

These white blood cells are exposed to UVA light, which activates the medication.

Step 5

The treated white blood cells are then returned to the body.

As you can see this IV needle is HUGE. Did I say HUGE? I have to keep my arm perfectly straight the entire time or else it may bend the needle and they have to poke me again in the other arm. The first time I had this procedure done they had to poke me 4 times. Needless to say when I got home my arms were in pain, swollen, and bruised. After that I made sure NOT to move to only get poked once.

The pictures below are after the treatment is completed and all my blood is returned to me. This is just some extra red blood cells mixed with what ever solution they used and is waste. Usually after this I am required to cover my entire body, especially my eyes for at least 24 hours. My skin and eyes are extra sensitive to the sun rays and can damage my vision and skin. So, I wear shades, a big floppy hat, long sleeves and pants.  I also use an umbrella to cover the sun while walking to the car.  I feel like a creepy man walking all covered up like this.

4:45pm – Back on the road again headed home. What a surprise, traffic. And more traffic.

6:15pm – Finally made it home. Arms are ok today with minor swelling. Most days after this new Photopheresis treatment I am ok without any signs of fatigue. This day in particular, I was so tired I laid down to rest for a bit before dinner and ended up sleeping all the way until 10:00am the NEXT MORNING. For those that know me, I am a night owl and barely sleep 5-6 hours a night.

This is a picture of my arms after the very first time I had the Photopheresis treatment. They stuck the IV in my left arm first, and after a few minutes it did not work. So the nurse decided to poke my right arm. This IV lasted for about an hour before it stopped working. So the nurse decided to poke my left arm again for the 3rd time with no luck. So they called in reinforcements and had a different nurse poke me again for a 4th time back in the right arm. Unfortunately the last IV punctured my vein to far and there was a leak when the blood was returning to me. We did not notice until it was too late and my arm had swollen up to 1. 5x its normal size (can’t really tell from the picture). Next blog entry I may show some pictures of what my skin on my body looks like. It is not pretty, but maybe it might help everyone understand what I am suffering from. The bright side is…….it could always be worse.