Jonny May

Hello everyone. I’ve been on the go so much lately that I haven’t thought about posting as much as I would like. Currently, I’m in South Bend, but I will be returning to Toledo again today and will most likely head to the Dayton area later in the week. I have been doing well and enjoying myself, I have embraced the return of a social life!

My appointment last week in Detroit was uneventful, just some bloodwork and a quick clinic check-up. My return next Thursday will be an important time as I get another scan to check my progress.

I am confident that it will go well. That said, I still have that queasy feeling in my gut, because if there is one thing I’ve learned that it’s to always hope for the best but plan for the worst. It can be hard to find a silver lining when things look bleak, but you have to get yourself in that mindset if you’re ever going to make it. Trust God. If you stay positive and try like hell to make things work…well, more good things will happen than bad. I know that’s easy for me to say as this is the greatest challenge I’ve faced in my life by far. I don’t know if I have advice for someone who has lost loved ones way too early or for those that deal with hardships of a different kind. You never know what another person goes through. But…if you know yourself first, I believe it puts you in a better position to help other people.

It doesn’t always happen, but there can be beauty in tough situations. It makes you very proud to have known someone who has overcome a great struggle. Persons such as these are easy to root for. It is not a perfect world by any means, but if there were no obstacles we would never get to see anyone shine.
Last year there was a time I found myself dreading another trip back for one more of the harsher treatments I’ve received. I was also scheduled to fly in a small plane through some potentially rough weather. Once in the air for awhile, I could see the towering cumulus clouds all around us…and I got in a bad mood. ‘Great,’ I thought, ‘Just what I need is a rough flight heading back to a treatment that’s going to make me feel like crap.’ However, what happened next helped me through. The pilot (who happened to be a surgeon) turned and said, “Well, it looks like it will get a bit bumpy. Do you like classical music?” I nodded, he seemed to be very confident and it really struck a chord in me. I grabbed a Bose headset and heard what I thought was the most beautiful music I’ve ever heard, and while looking out the window we punched through storm clouds with scattered rays of sunlight beaming through. I relaxed completely and smiled. It felt like I was on a roller coaster ride through heaven.

Needless to say, I felt much better and it made my treatment exponentially easier.

Thank you all for helping me on my journey. God Bless you!

Jon

It’s so hard to believe that 9/11/01 was 6 years ago. I’m sure for most of you it feels like yesterday too. If I really stop to think about everything I’ve done in between it has indeed been awhile. That was the beginning of my sophomore year in Hays. A few months later I stopped playing baseball. I felt like I had enough raw talent to be a very good player (I was told exactly that by my coaches), I just wasn’t experienced enough. Most players on that team had played more baseball in 1 year of high school than I played in 4. Hanging up the cleats was a hard thing for me to do, and all of a sudden I didn’t spend as much time with my baseball buds. I also had a lot more free time on my hands. I thought it might be best for me to get away for awhile so I thought I’d give the NSE (National Student Exchange) thing a try. My first choice was Oregon, second was Bowling Green, and third was Boise State. I didn’t get Oregon so I ended up at BG. The summer before I left I got a nice paid internship with with the Kansas Department of Health and Environment. The job was great, but I didn’t have many friends around. I don’t know how I stayed sane, I didn’t have cable or internet access for the whole summer.

When I left for BG, I was as excited as I’d ever been in my life. It was a great year for me. The only hard thing about that experience was the fact that I was leaving friends behind in Hays, then once again when I left Ohio for KS to finish my degree. When I finished my undergraduate, I didn’t care for my job prospects (I wasn’t very patient either) so I thought it would be best to get a masters degree. I returned to Ohio in the spring of ‘05 to start work on my MPH (Master of Public Health). I was a part-time student for the spring and summer, then full-time for the fall and following spring of ‘06. My GA duties ranged anywhere from 10-30 hours a week the entire time.

Right now I’m enjoying some down time at a nice lake house in Southern Michigan (a friend of my mother’s place). I did some fishing yesterday and will do some more this afternoon. It feels like a nice, crisp autumn day (high of 63 today). I won’t return to Detroit until next Wednesday night. I will most likely take a little road trip to Toledo and Cleveland this weekend. I may even hit up Ann Arbor for Saturday’s ND/Michigan game. Not sure yet…we’ll see what happens.

I’m really feeling pretty good. I hope it continues, and that one of these days my leg gets fully healed.

Thanks, as always, for your support and prayers.

We got a preliminary report that the tumors are stable, great news since in the previous month before this one I had at least 10% growth in the largest tumor. This month it was less than 1%, and when combined with clinical improvement (no more coughing and shortness of breath), these are very good signs. We were told that this is a typical first step in disease regression. I will continue the XL880 for another 4 weeks then get another scan. I will also have a PET scan to measure the FDG uptake to see if there is any necrosis. Basically we shall see if it is dying. Although it wasn’t drastic, it appears that I am getting some benefit from the drug! The jury is still out, but, there is a very good chance that I’m on my way to better days with my health. Thank you all so much for your prayers, and please continue.

It’s time for you to go. You have taught me so much about life, and you have shown me that I possess more inner strength than I knew I had. It was a dear price that I’ve paid for your inconvenient stay, but in the end dare I say that it has been a blessing? However, you’ve hung around long enough. It’s time to show everyone that the challenges you’ve presented to me can be overcome. You’ve taken me on an incredible journey that has already made for numerous gut-wrenching stories. If you decide to leave now we’ll even throw you a going away party. You steal time from lives that deserve more, but I’ve got some things you can’t take away. I do have some requests - I would appreciate it if you didn’t visit any of my friends, and please don’t rob me of the joy I hope to feel this week when I get the news that you are leaving for good or being locked up for a very long time. It is a moment that I’ve been waiting for all of my life…to emerge victorious against all odds, and, in doing so, lay the foundations under dreams of your defeat for my unfortunate peers who have also dealt with the hardships of your most unwelcome presence.

Good riddance.

It always helps to have a sense of humor. I know these sound like bad pick-up lines, but I have to admit I was on a roll…

(for my EKG)
Nurse: “Take off your shirt please.”
Response: “But we just met!”

Nurse: “Sorry, I know we just pulled your IV, but we’re going to need some more blood. I bet you are tired of needles.”
Response: “I’ve been getting poked more than Paris Hilton.”

Nurse: “I wonder why they requested another urine sample.”
Response: “Wait…that one is for my parole officer.”

Have a great weekend!