Jonny May

I’ve been running a fever as high as 102 since Sunday evening. It’s an episode like the ones I was getting before I was diagnosed. I’d get chills, fever, some nausea, appetite loss, and a little bit of pain at the primary tumor site. From what I understand, sometimes the tumors secrete toxins resulting in immune response causing the symptoms. I’ve only had a slight fever a couple of times since I’ve started treatments. Prior to that, I had the high fever 3-4 times from February to May. It’s been awhile, but man is it getting old. I feel like I need to have the primary tumor removed asap, I just wish I could skip the recovery time because it won’t be easy. Originally I was told that for the surgery (including radiation) I’d be in the hospital up to 10 days and on crutches for at least 8 weeks…yuck.

Anyway, the birthday party was nice. Lots of people showed up, it was almost overwhelming…I’m not used to that kind of attention. I also want to thank everyone who sent cards, gifts, etc. Hallmark should send me a thank-you for giving them so much business!

I got a few things I need to chew on over the next couple of weeks. I have been waiting to get into a clinical trial for awhile now, and it looks like I’ll get in. However, if I want to go to New York for a second opinion, the date that I want to go might jeopardize starting the trial. If it indeed works out that way, I’d at least have to wait another month and there is a possibility that I might not get in at all. I think as of right now I’ll take my chances and go to New York. I believe I have more to gain by seeing someone up there. It might complicate things, but it’d be worth the risk if something better came along. From all the research I’ve done this makes for a smarter move. From a few things I’ve learned, it was not a smart move by my doctor to put me on chemo since it doesn’t work. Some have said that not a single person with my disease has shown improvement while on chemo. Now, I’m sure it goes a bit deeper than that, but I’d like some answers if I do find that it wasn’t worth it. Going through 5 rounds of chemotherapy with no benefit does anger me a little bit if another Doc tells me that there was no chance for improvement.

As well as seeking a second opinion in NYC, I’ll also be attending a fundraising event for my specific type of cancer. It appears to be a formal dinner that recognizes the top doctors in the field. I think it is an excellent opportunity for me to learn a few things and meet some others with the same condition. It sounds like there are more promising clinical trial options coming out soon up there.

I’m doing well lately. The hospital trip last weekend was no fun though, but at least everything is good now. I am taking shots twice a day of fragmin (a blood thinner) subcutaneously around my belly button. It’s annoying, but no huge deal. I’m not the greatest at giving myself shots yet as I have a couple of good bruises, but I think I’m getting the hang of it.

Well, I turn 25 on Friday…I am looking forward to seeing some of you who are coming to the little party, and thank you to those who have already sent cards, and those who are planning on it. It’s appreciated. Its great hearing from people, weather it’s a phone call, email, card…whatever. Even though it might be difficult for me me to respond all the time I do read everything and enjoy it.

I had a scan early yesterday morning to see what was going on with my chest pains (I didn’t feel too bad), and sure enough…they found a blood clot. It must have been a very potentially serious situation bacause the radiologist wasted no time in admitting me. So I had to spend most of the day yesterday, last night, and a good part of today in the hospital. They just needed to monitor me and get me started on blood thinners (which I may have to take for the rest of my life). So it appears that everything is okay, and I’ll still get to make my trip (barely). Now I just have to take some shots for the next 10 days or so before I start oral medication for thinning blood. I’ll post more detail later. Just wanted to let everyone know that things are okay in case you heard something.

Sorry everyone, I’ve been meaning to post for days now. I’m doing okay save a few chest pains the other day, it still feels a bit funny when I take deep breaths but nothing painful or terribly uncomfortable. I have to pack for another trip here soon, this might be my last time with traditional chemotherapy. Hopefully I’ll be starting the clinical trial (experimental drugs, phase I) we’ve been trying to get into here in 4 or 5 weeks. I have some mixed feelings about it, it looks promising as far as possibly stopping the disease from advancing, but it doesn’t seem like it is meant to eliminate it (which is obviously what I want). From my understanding, it blocks the formation of new blood vessels thus slowing down any significant growth or additional spread.

I also want to make it to Memorial Sloan-Kettering Cancer Center in New York to seek another opinion/check out other clinical trial options (it’s ranked #1 for cancer hospitals). In addition to that I hope to make it to a fund raising event for ASPS while in NYC on Nov. 6th. Funding for research on this disease is extremely important and I can’t believe that this isn’t in the public eye more because currently there is no known cause, no known effective treatment, and no known cure for this disease. Sure, it’s rare, but given the seriousness of ASPS and the early age of onset in most cases, you would think that more could be done. I am looking to get more involved, and attending the event in NYC would be a nice first step. I hope I can make a difference. It really makes me feel good when people tell me that I’ve inspired them to become better people. It sure sets my mind at ease. I will do my very best to do everything I can to get this beat, and to not let any of you down. I am completely content with accepting whatever God has in store for me. If people change for the better because of what I’m going through, why then it’s worth it. I want my actions to give hope for others. I am getting less and less scared everyday, even when the outlook gets worse because when people tell me that I give them a more positive outlook on life, or if they do something like quit smoking just for me…then it fills me with a lot of satisfaction and getting through this becomes so much easier.

On a lighter side, we got a new puppy. He is a vizsla that I named Zibby. We’ve been having a lot of fun with him, but it is some work! He seems like he is going to be a great pet and a good hunting dog. Also looking forward to a bit of traveling somewhere other than back and forth between treatments. Where and when in most cases is yet to be finalized. Hopefully I’ll be coming to your cit-ay soon (sorry for the Big and Rich reference Jared). Take care and God Bless…