I now have a surgical consult on Wednesday with a thoracic surgeon. So we probably won’t be heading back to KS until at least then. We are still trying to work out details for starting a new trial. Other than that, I’m feeling okay. Dad and I went to Philadelphia yesterday and caught a Phillies game. We had a good time. I’ll write more later.
I would like to tell you I’ve never been scared. I’d like to tell you that I’ve never felt down, or unoptomistic. However, that is not the truth. On Friday I lost someone that I looked up to even if I’d only met that person once. It really hits home the first time you meet a young person who is fighting the same fight against the very same disease that does not win (I dare not use the words “lose the fight” because that is not an accurate statement). When you see a person doing all they can with the fierce help of loved ones you can’t say lose. This world lost a great person yes, but she did not lose her fight…no one that doesn’t give up loses.
I’m trying like hell to fight with all I’ve got. Anytime I feel down, I owe it to myself and to all of you to pick up the pieces and move on with the fighting spirit. All that I try to do is act like someone I would look up to if that person were in my shoes. I know that there are many people out there more deserving of a miracle than I am. That doesn’t keep me from asking God in my prayers, “why not me?” Sometimes I wonder why I was given so many gifts in life up to this point. I had everything I could possibly ask for, I’ve always felt I had many talents. I was a healthy, athletic, and smart guy. Well, I guess I’m still smart…maybe 
. It is not like I have had any major problems before. But now it is like all that was good is being slowly stripped away, and that makes it so hard. I am starting to lose my grip on what it is like to be a strong young man. It pains me to no end to see friends and family get upset over me. I think there are times when people don’t quite comprehend what it is like to have such a physical free fall. I didn’t get in an accident, I wasn’t born this way. I did nothing to deserve this. Can it be worse? Maybe. I have been pondering this for awhile. It depends if you are one of those people who buy into the “it’s better to have loved and lost than to have never loved at all” phrase. I also think about how hard it will be for me to get back into the dating scene. I’ve put a lot of thought into how a person could possibly want to date a person in such a condition. I’d like to think that a future girlfriend would buy into the love and lost. So therefore I will too. It is tough to admit it, but I have it better than persons born with a disability. I have it better than someone paralyzed by an accident. I can still control my destiny to a certain point, and with that I’ll give it all I have now in the hope I can get back what I lost and then some. Now I just need guidance from above. No matter what happens, keep praying…not just for me, but for you and your families and also for people you don’t even know that could use an extra boost. I’ll never stop asking God (meekly) for a miracle.
My CT scan results are not good, growth across the board…even some new lesions. We now look to other options. Nothing will be available at the NIH for a couple of months so we’ll look everywhere. We are unsure at this point when we will leave here. Currently we are contacting people that can help us find the best trial available. However, the most painful news of the day was hearing some bad news about someone else. I mentioned below that the daughter of someone who has helped me in so many ways has died of this dreadful disease, she was only in her 30s (she was also a MD Doctor). I met them both in New York in November and they were both fantastic people. She seemed to be in decent health and was very optimistic so it just goes to show you how fast things can happen. I’m very saddened. There is more I will share later, the news is too fresh in my head to continue. Please pray for the departed and for other people affected by this disease. They lost one hell of a fighter.
Hi everyone, I first wanted to answer a couple of questions. My address while I’m here (should be at least a week) is; The Children’s Inn at NIH, 7 West Drive, Bethesda, MD 20814-1509. The other is regarding the best place to send donations for research. I’m sure the NIH has something, but I’d also incourage you to give to The Alliance Against Alveolar Soft-Part Sarcoma…the funds go directly to helping with research and other things for this SPECIFIC type of cancer. http://www.alveolarspsarcoma.net/ is the link and there should be a link from there to contributions. I know the site hasn’t been updated in awhile, but I do know that the main person who runs this organization has a daughter that is very ill from the disease at the current moment (and she probably saved my life with her direction as to how to fight this disease so prayers for her daughter would be nice).
I had blood work this morning and was supposed to have a PET scan by now, but the machine isn’t working. I’m now off to have my CT scan, followed by a clinical visit. Without the PET, I’ll probably have to wait until tomorrow (when it is rescheduled) before I know anything about how to proceed with treatment. Look for another update soon. I may also post something tonight as well.
Hi everyone. I know, I know….I should write more. I’ll get better. Dad and I leave Saturday for DC via driving. We plan on going to Pittsburg for a pirates game on Sunday. I have some big tests Monday (prayers appreciated). I have a PET and CT scan. This will determine if we continue the drug I’m on or switch to something else. One option is a chemo drug (taken orally) that sounds fairly promising, but it could be toxic. I have to have blood tests to determine how fast I could potentally metabolize the drug. If I do too quickly, well, it has killed lab animals. If I metabolize slowly, then it’s okay. However, it will ruin any fun things I plan I doing because it sounds like I’d have to be hospitalized for 10 days or so to be monitored for that experimental drug. So maybe no running up to NYC to catch a yanks/bosox game or going to the preakness.
I was asked to be a speaker again, this time to my old high school. They wanted me to be the graduation speaker, but I was going to be gone, so I talked at their awards banquet. It was very similar to the one below, but since it was to a Catholic school, I felt more comfortable talking about faith so I added a bit. Here is what I added
Before I was diagnosed, I had hopes, dreams and desires. Afterwards I started to feel those things slip away. Then along the way I realized that I had to hold on to my hope for the future tighter than ever. No one is guaranteed an extra day of life – not even the healthiest person in the world. Sometimes all you have is your faith. Faith that God will deliver you from your ailments. I believe that there is a healing power in faith, and even science will back me on that. According to Duke University’s Center for the Study of Religion/Spirituality and Health…
· People who attend church regularly are hospitalized much less often than people who never or rarely participate in religious services
· People with strong religious faith are less likely to suffer depression from stressful life events, and if they do, they are more likely to recover from depression than those who are less religious
· People with a deep, personal (or “intrinsic”) religious faith have a stronger sense of well-being and life satisfaction than their less religious peers. This may be due in part to the stable marriages and strong families religious people tend to build.
· Religious people have healthier lifestyles. They tend to avoid unhealthy habits.
· People with strong faith who suffer from physical illness have significantly better health outcomes than less religious people.
· People who attend religious services regularly have stronger immune systems than their less religious counterparts.
· Religious people live longer. The list goes on and on…
After learning all of these health benefits by being more religious and attending church I feel more comfortable being in the back of the line to drink out of the chalice for communion.