Health Update: Still experiencing GVHD Schleroderma on my upper rib cage area, armpit region, waist, stomach, and lower back mainly. It has aslo slowly progressed to my inner thighs as well. To help understand what my skin is like, it feels stiff and hard, almost as if I am wearing a wetsuit. My mobility is limited and cannot bend, move, and fully extend my arms up to touch the sky. I promise I will post pictures of what the skin looks like in my next post. This post is a happy post since we are celebrating my 2 year bone marrow transplant birthday!!!
This posting is a little over due…..2 years ago (9/20/2009) I was given a second chance to go back to school, a second chance to call friends in which I lost touch with, a second chance to get married, and a second chance to live life again. Diep Dao was the person that made this all possible and donated her bone marrow to me without even knowing anything about me. She did this out of the kindness of her heart, wanting to help another human being she didn’t even know, me. We have become better friends since and our families keep in touch often. She is an amazing young woman who is in medical school and will save many more lives in the future as a physician. In addition, she was recently called upon again to donate her bone marrow to save another young life (See previous post for full details). Truly amazing.
With this milestone post, 2 year post bone marrow transplant, I would like to revisit a few of the wonderful things I was given a chance to experience….there are MANY, but here are just a few.
My outlook on life has changed dramatically since my close call with death. I used to always plan for the future, wanting to save things to enjoy later in life. I always did the “right thing” at the time because that is what we were taught to do growing up. During my battle with Leukemia when I didn’t know if I would be here the next day, I was scared and upset. I was scared because I didn’t want my friends and family to be sad if I were gone and upset because I wouldn’t be able to experience everything in life we are “supposed to” such as having a family, home, grandkids, etc.
Now that I have been given the opportunity to a second chance at life, I do things a little differently. I now tend to do things that make me happy at that moment…instant gratification. I do things I know I shouldn’t but why shouldn’t I? There is no point in living life if you cannot enjoy it now because if we wait for the right time to do it, we may be too old or worse, not even be here anymore. For example, a few weeks ago I had a few exams to study for, a hospital visit, and treatments that day. There was also an event at the Staples Center in LA where I knew a few Los Angeles Lakers players would be at and I could possibly meet (I am a HUGE Lakers fan) one in particular was past head coach Pat Riley who is rarely in LA. So, the right thing to do was to go home after my hospital treatment and study. Well, I decided to do what made me happy and headed over to the Staples Center after my long hospital visit and sit outside of the Staples Center where Magic Johnson was having a press conference to celebrate his 20 year survival of AIDs. There was no guarantee of meeting anyone but I went anyways.
It was my lucky day. I saw Magic Johnson walking by and getting coffee and his security guards pushed everyone else away. I asked nicely and was the only one to meet him and get an autograph…SCORE! In front of the Staples Center I was also able to meet James Worthy, General Manager Mitch Kupchack, Mychael Thompson, Michael Cooper, Kurt Rambis, AC Green, and baseball legend Frank Robinson. Some of these guys I have met already in the past as you can see from the pictures above. I was the only one out there and got autographs from those Lakers. I didn’t get to meet Pat Riley but the trip was well worth it. So you ask, “what do you do with the autographs?” I can’t answer that question myself. I spend money on basketballs, spend time waiting to “maybe” meet someone, and to just get them to write their name on it. I could do that myself if I really wanted to. In the end, they just sit in my room collecting dust. But it is the experience that makes me happy. I grew up watching these guys play basketball and now I have the opportunity to meet them in person. I can look at the autographed basketballs and say that I met these Lakers and the memories of the day can never be taken away from me.
So my point is we should live life doing things that make us happy whether it may not be the right thing to do. I hate hearing people complain about their lives, how horrible it is and stressful it is. If that is the case, do something about it, do something that will make YOU happy…find a new job…leave your significant other who doesn’t make you happy and meet someone else…go get that shirt you’ve been thinking about…treat yourself to a nice meal….spend that extra money on the toy you’ve always wanted and reward yourself…speak up and say something to a friend everyone else is afraid to say to them…go watch a movie and relax if you’ve been working hard all day…basically, be a little selfish. It is nice to want to help others, but don’t forget about YOURSELF. You work hard so it’s okay to play hard.
If you are unhappy and think your life is in the gutter, THERE IS ALWAYS SOMEONE ELSE WHO HAS IT WORSE. That is the ONLY way I get through the day because even though I am cancer free, I still battle the effects of Leukemia and bone marrow transplant. I have graft vs host disease (GVHD) and deal with GVHD induced schleroderma. I have lost lots of mobility in my arms, back and legs. I suffer from myopathy and sometimes my entire body spasms and I cannot do anything about it. I am in CONSTANT pain all day and go to the hospital 2-3 times a week for photopheresis and chemotherapy treatments. These treatments are supposed to help but my body is not reacting as fast to these treatments and my oncologist has been trying different combination of treatments. I take a plethora amounts of medication daily to prevent infections and to help me get better. I have diabetes from all the medications that I have been on. I have severe dry eyes and have trouble reading and seeing throughout the day. They said all of the treatments “should help” and could take some time to get better but I will NEVER be back to normal. Sounds horrible and who would be happy with any of this, but I know there are others who have it worse and I see these patients every time I go to the hospital. I feel fortunate to be able to still walk, to still be eating on my own and not through a tube, to not have any organ failure which is common, fortunate to just be alive. I am fortunate to have Diep as my donor, as well as my mother, father, and Chloe there everyday by my side since this all started to help me get through the day. Without the four of them, as well as all my family and friends who have supported me (That’s you if you are reading this), I would not be here today. I don’t complain [only to Chloe =) and right now I guess] about any of this…but I continue to do what it takes to get better. Sitting around and sulking is not going to do anything for me. As Russell Peters would say, “Be a Man!” I will continue to make the hour long drive each way to go to the hospital for treatments if there is any slight possibility that it will help.
So, I hope you can and will do the same. If you are unhappy about something, do something about it….do something that will make you happy. For those that are happy and content, do something out of the ordinary for yourself to make yourself happy. This may include doing something that is not the right thing to do….but that is for you to decide. Pick and choose your battles, but live your life and be happy.