Jonny May

I forgot a few things that I wanted to share.

If you want to hear a similar story, look at this link which was sent to me yesterday. It’s about a young woman with the exact same cancer I have. It’s a very long and detailed story, not to mention emotional. It’s a series of articles from the San Fransisco Chronicle.

http://www.sfgate.com/cgi-bin/article.cgi?file=/gate/special/pages/2005/alicia/partone.DTL

Another thing people ask me about is how to donate to cancer research. I tell people they can make the most difference for my cause by donating to Sarcoma research. It appears that if a general donation to cancer research is made, it’ll probably go to more frequent cancers such as breast and prostate (and although money for research is needed it is upseting to me that much more money goes here because the cure rates are soooo much better. I also realize there are political reasons behind this). So please visit a place like http://www.sarcomacancer.org/ for information on donations if you are interested. Probably even better would be to make donations at http://www.alveolarspsarcoma.net/index.php?p=contributions

Probably the worst thing about this whole experience are the nightmares. They aren’t as bad now, but man, you sure freak out when you have dreams such as being hooked up to machines in the hospital, or having a phantom dr. visit where things go from bad to worse, and the worst is dreaming of your own funeral. Scary shit, but thankfully these aren’t as frequent as they once were.

I’ll keep posting

Hello folks. I had a CT scan today and didn’t get the news I hoped for. Some of the nodules in my lungs got bigger over the last six weeks. Not much, but enough to abandon the chemo drugs I’ve been taking. We now turn to clinical trials. I’ll most likely be starting one in a month or so.

I’m doing okay. I’ve managed to stay positive through this whole experience, but today was tough.  It was hard to fight off the emotion, but I feel like I need to stay strong for my family and for all of those who believe in me. I can not say what is in store for me. This cancer is very rare and slow-growing, two factors that work against me. Barring a miracle or new, effective treatment (I guess that would also be a miracle)…it could be two years or it could be fifteen or more before this gets the best of me. I’m determined not to let that happen. I just hope I can buy enough time for a breakthrough.

I thought I’d also share a few tidbits about my experiences over the last few months.

One thing that has been great is the almost overwhelming support I’ve received from friends, family, and even strangers. I’ve had people I’ve barely spoken to or paid much attention to in years be surprisingly kind and generous and yet at the same time not heard anything from people I’ve considered to be some of my closest friends.

The other guy I met with a similar cancer isn’t doing well. At the same time he doesn’t look well either, at least compared to me. We’ve sort of become friends. Anyway, he did make a comment that bothered me when he found out there was nothing more that could be done for him. He told me that, “at least you don’t have a wife and kid.” What the hell is that supposed to mean? A family is something that I’ve always wanted and although I haven’t given up hope, I have to deal with the possibility that it might never happen.

Another hard thing is seeing my parents and others worry about me. I can handle all the pain in the world but it really hurts to see that. I might have mentioned it before, but one thought that gets me through is that if this was going to happen to anyone, I’m glad it’s me and not a family member or friend.

If you didn’t make the connection with my now-bald dome, you would never know by looking at me how serious this disease is or that there is even anything wrong. Someone told me the other day that I look like Mr. Clean, I think I just got a good idea for a Halloween costume…

Everyone keeps asking me what they can do for me and usually I tell them these things.

1. Pray, not only for me but for your own family’s health

2. Don’t smoke, and if you do, quit. Avoid secondhand exposure. Although I probably didn’t get cancer from smoking (I’ve maybe smoked 3 or 4 packs total in my life and perhaps a few cigars), having cancer in your lungs is no fun. I’ll never so much as have another puff ever again except perhaps a nice cigar the day I officially beat this shit.

3. This might pertain more to people around my age, but I tell them to make sure you have good health insurance. A year ago I thought I was on top of the world (that young and invincible feeling), and that nothing could happen to me…

4. Make sure you are an organ donor

Thank you all for your prayers and support.

Hello friends and family - I did so many things last week that it’s hard for me to describe.  I haven’t been home in KS for awhile.  After my last post, I got to meet Fr. Hesburgh, and wow, what an amazing man. He held a private mass for me and it was truly special. In case you don’t know, Fr. Hesburgh is a former Notre Dame president, and the main library (aka Touchdown Jesus) is named after him. His office was like a museum, also from my understanding he has more honorary degrees than anyone. I’ll never forget meeting the man (he’s 89 btw and still going strong).

Wednesday Dad and I left for Toledo for a few things. I tried to tie up a few loose ends, meet with friends, and had an arranged chemo treatment there. Went to Bowling Green Wed night to meet with friends, chemo Thurs., meet with friends again in Toledo that night, had family come see me Friday, went to Toledo’s Zoo (it’s nice btw). Then hit up the Toledo/Kansas game that night, and it went into double overtime (yuck for the late drive home!). Drove back to South Bend that night…went to bed at 4am! Got up for the Michigan/ND game and went tailgate hopping. Had a pleasant surprise when it was arranged for me, Jeremy, and dad to get hooked up with pregame passes for being on the field. So we got to be on the field surrounded by 80,000+ fans watching the teams warmup, and were also out there for the national anthem and the team coming out of the tunnel (pretty much right until kickoff). It was amazing. Unfortunately, that was the highlight of the day as ND got waxed. I’ll save talking trash on Michigan for now, but I hope they lose every game from now on (sorry UM friends and fam) except the Ohio State game (sorry Mom).

Well, anyway…back home in Tipton now. I better get caught up in my classes. I have appointments and most importantly a scan on Sept. 26. Also going to try to make it to FL for a few days in October…I’ll be posting more soon. Thanks everyone for your continued support.

Sorry that’s it’s been awhile since I’ve posted. I was in Minnesota again last week and made it to South Bend, IN for the weekend to catch the wonderful Notre Dame game vs. Penn St. I’ll also be at the game Saturday vs. Michigan. I’m heading to Toledo tomorrow for treatment as well as seeing friends and catching Toledo’s home opener Friday night against KU (yup good ol’ Kansas). Should be fun as long as I handle the treatment well. Hopefully it just makes me a bit sore like last time. I’ll probably have my next scan in 2 weeks so I’m sure everyone will be notified on how it went. I’ll post again soon.

I thought I would take the time out to thank everyone for all of your support. It really means a lot. It might be tough to thank many of you in person or send out a note (I’m trying, but there’s a ton!), so I hope you all know it is deeply appreciated.

Well, I leave for another treatment on Monday (in MN). It shouldn’t be too bad, then it’s to South Bend, IN for a couple weeks or so. Yay football! I’ll probably make an appearance in Toledo at least for a day. I’m trying to work it out so I can have my next treatment either in South Bend or in Toledo so I don’t have to go back up to MN, but we’ll see. Not much new lately with me, did go to a Chiefs preaseason game last night so that was fun. I also have a couple of assignments for my online classes due here soon which should keep me busy. Take care. Peace. Out.