Jonny May

For some reason today, I feel tired of bumming around. This waiting game is frustrating. I’ve thought a lot about my chances lately, and you know what? They aren’t good enough, even though the cure rate for this is low at this stage…SOMEBODY had to have beat it. Why not me? Sometimes I get the feeling that the docs really don’t get active enough. Why specialize in something like this then? To see lots of referal patients for a challenge and tell them bad news? How awful. It would really put my mind at ease if I had assurance that everything is being done to get me back on my feet ASAP. I’ve taken good care of myself through the years, been in good shape, and healthy. It may be selfish but I always thought I had a lot in store for me in the future, my health should be prioritized ahead of someone much, much older with the same kind of problem! Okay, I apologize for the rant, just speaking my mind for a second…

Hello all, had another round of chemo yesterday…and it went well. I had a combo of drugs, and side effects have been minimal thus far. What a difference between my first two treatments! I met a 32 year old guy getting the same kind of treatment for a similar cancer. I believe he has sarcoma, just more in his nervous system. He also had metistastic development in his lungs, abdomen, and perhaps other places. While he was in good spirits and glad he got to meet someone at least a little close to his age, he really didn’t seem all that optimistic about beating it. Kind of scary. He also told me that with the exact type of cancer he has (and again it is very similar to mine) the doctors here told him that they only see once case like that a year.

Well, all in all I feel pretty good right now. It kind of comes and goes. It has been really hard being patient through all of this. I just don’t feel like a normal mid-twenties guy. I’ll be more than ready to get out of my parents house when the time comes. At least these type of chemo treatments will allow me to do more socially and football season is right around the corner. Please feel free to call, email is okay too…I just get sooo many that it’s tough to respond in a timely fashion.

well, here it is in a nutshell…The cancer I have is Alveolar Soft-Part Sarcoma (very rare). It started in the inner part of my left thigh as a tumor which is now about 10cm in diameter, it has since spread to my lungs. I didn’t really think of the growth in my leg as a problem as I pulled my groin playing some intramural sports and figured I just had some residual scar tissue. That was close to two years ago now. This spring I started getting sick a lot with chills and fevers. We couldn’t figure out what was behind all of this since I apparently didn’t have any type of infection. Well, one day I got sick once again and the spot on my leg doubled or maybe tripled in size. Shit. Figured that was now the cause of the problem, and sure enough it was.

Hi all. I had some mixed feelings earlier this week after meeting with the Doc. My CT scan showed no improvement, it even showed some minimal growth. We decided to try different chemo drugs. I was very worried at first, but when I discovered that there were a few options I breathed a (small) sigh of relief. From my initial impression I thought the options were very limited. This round of chemo doesn’t appear to be near as harsh. I wanted to say “hit me with all you got doc” but he stopped me before I could say that and said that with this type of cancer, we don’t hit it with a sledgehammer like some kinds, it’s more of a lock and key type of thing…we’ll just need to find what works.

So after this time around if I do not improve we may either have to go with clinical trials and/or seek another opinion (MD Anderson’s in Houston maybe). It’s tough for me to make up my mind overall on how things went today. I guess I’ll just have to keep looking on the bright side and we’ll find out how to beat this thing.

I’m just putting out a quick note to get things started here. First I want to thank Adam for his help in getting this site started. I set out to get a site started for Jon and the family so they could quickly post and share their thoughts and ideas and share it with family and friends. I hope that this will be a place for folks to come and wish Jon well and for us all to say thank you for the support and prayers.