Jonny May

Hi all. As of right now I’m at home, and I actually feel pretty good except for a small, annoying cold. Definately better than last weekend. Usually I need to be dragged to the hospital, but last Saturday I was more than willing and you know it’s bad when they told me I was free to go and I really felt like I didn’t want to leave…that’s how crummy I was feeling. Well, we thought that something needed to be done asap so we ran up to Mayo and met with a surgeon. Unfortunately, the Dr. really didn’t know much about this disease (I could tell), and didn’t want to do the surgery, and made a big deal out of in order to get all of the tumor out they’d have to take my leg. So it wasn’t a pleasant experience. Fortunately the next day we got a call from D.C. and we’re going to get into a study and that will allow me to have surgery at the NCI (so no more insurance issues). I could be in Bethesda for a couple of months. It sounds like we’ll leave as soon as later this week, but either way have surgery in early January with the surgeon that I was hoping for.

One thing I’ve always wondered throughout this whole experience that finally made sense to me is that I couldn’t figure out why people I knew (but wasn’t all that close to) got so emotional when talking about what I was going through. I was talking to a man the other day who knew me from high school sports and he had a son my age, and he cried right in front of me when he said “you could very easily be my son, and it’s hard for me to imagine what you must go through.” Then it hit me like a ton of bricks, that is so true. I could be your son, your brother, your husband, or your best friend. It’s one thing to have crap happen to you personally, but a completely different thing when it’s someone you’re close to. Friends and relatives tell me all the time, out of all people for something like this to happen to, you’re the last person that would have come to my mind. I suppose that means that people view me as a strong guy, and at least it gives me a little confidence to fight this thing, and like I’ve said before, if it was going to have to be anyone…I’m glad it’s me and not you.

God bless you all, and have a very Merry Christmas!

I went to the ER today and am back home now. My temperature was over 104 late last night, and I couldn’t keep anything down. I’m still running a fever, and we’re going to try to make the trip to Rochester tomorrow to hopefully get going with surgery. I feel a little bit better than I did late last night/early this morning…but it couldn’t have been a whole lot worse. If things go as hoped I’ll have surgery soon. I don’t care at this point if I’m in the hospital for Christmas. Thanks for your thoughts and prayers.

My apologies…I haven’t posted in awhile and I’ve had several people point that out to me. Wow, I’m accumulating quite a following on here. Anyway, we’re back home finally and waiting to see if we qualify for a promising clinical trial. An immunological study just opened up for other cancer types. Some of you may have heard of Dr. Rosenberg’s famous technique that did miracles for advanced melanoma patients. I just got word today that my blood carries the correct protein to get in (had a 50/50 chance), now they need to check if my tumor over-expresses a certain type of gene (another 50/50) to see if I can get in. I’ll post more details if in fact, I do get in. I am also going to have surgery soon, I may wait until after the hollidays, but we’ll see. I don’t know how much longer I can wait, my leg has been a bit more sore lately. The surgeon that we met with also said that if it didn’t happen soon, it would start causing major problems and be even more difficult to remove. There is a slight risk that I may lose my leg if I have surgery, but I really don’t have much choice and I feel pretty confident about it (especially when the surgeon said that he’s never had it happen). The tricky part will be repairing some major blood vessels that will probably need grafting. So that’s where the situation is now. I will most likely after the surgery get in the trial if I qualify or get on a couple other of drugs that have shown some promise, one was mentioned below. I’ll post more…I promise, and hopefully I can figure out how to post some pictures on here for you all too. I don’t know why but it hasn’t been letting me. I might have to call in the troops on this one…hint hint administrators