Jonny May

Thank you all so much for the kind words and prayers. It means a great deal and it’s somewhat comforting knowing that I have quite a large volume of prayers being said on my account. I say many prayers while strapped down receiving the radiation. Mainly, I pray for all who have been supporting me and my family. I remain completely motionless for about 10 minutes so I figure it’s a good time to get prayers in. I have a hood-like mask that I get strapped into so my head stays still, it is very tight and a little uncomfortable, but I get through it fine. The first day was a little more difficult as they needed some extra x-rays while I was strapped in, so it took much longer. As a whole, the process doesn’t seem like a big deal and I am dealing with it very well. I feel much better than I did a week ago, we adjusted some medications and it has helped. Hopefully, I will resume the promising clinical trial right away when I am finished with the radiation treatments.

Stay cool this summer. Here we have been getting blasted with storms the past 4-5 days.

Jon

Yesterday I got fitted with a mask that will keep my head in place for the radiation treatments. It was an uncomfortable experience, but I got the job done. I finally got some better anti-nausea medication and it’s making a huge difference. I am still very tired as many medications cause drowsiness. It’s a vicious cycle as certain drugs help but have side effects which need to be controlled by other drugs. Wednesday (tomorrow) at 1:30 EST I will get my first treatment. The actual procedure shouldn’t take more than 15 minutes. It would be nice to get a few quick prayers right then. I will have treatments every weekday for 10 days. Side effects should be at a minimum but I will have to be careful about a few things (diet restrictions, etc.). I sure learned a lot yesterday when they explained in detail about my treatment. Many factors contribute to your own personal radiation experience. Size, location, age, and other things make big differences on things you need to watch out for. That said, I actually don’t feel all that nervous.
Wish me luck, I’ll keep everyone up to date.

In my forehead, I have a tumor that has eaten through the skull and is pushing against my brain causing the pain. It has a diameter of a little less than an inch. This tumor will be targeted for the radiation which should start sometime next week. I also have other tumors in the bone portion of my skull that aren’t currently causing problems, one on the back of my head and one on the top. Thankfully it appears that there are no lesions actually in the brain. As of right now I’m looking at 10 days worth of treatment. Overall, the hospital and doctors seem to be fantastic. The cancer center there is new and they have new equipment.

We are trying to work out many other details right now. I’ll let you all know if anything else comes up. Thanks for the prayers.

I will see a radiation oncologist today at Flower Hospital here in Toledo. I am not sure what all will happen. I imagine they will need a biopsy (never fun) as well as more scans before we can start with treatment. One good thing is that the hospital is almost walking distance to where Brandy works. I want to get going with it asap as I am still getting awful headaches and need strong painkillers to even function. I will write again to let you all know what happens today.

I’ll be starting radiation soon. They found tumors in my skull (top of my forehead). I’ll have to stay on top of the pain, but from what I understand, we can take care of this. They say the situation in my lungs is more serious at this time.

It has been a bit of a shock and something that definitely took my wind out, but I’ll get through it. At least I now know what I’m dealing with and what’s been causing the pain. It sounds like there is a good radiation oncologist locally that should get in touch with me soon.

Please keep the prayers coming…

Hello friends and family - things went well yesterday. The only unfortunate thing was that my appointment with the cryosurgeon was cancelled. Preliminary reports from my CT looked fine from what I’m told. I have peace of mind for now, but I’ll wait until the final write-up before I officially make a comment one way or another. Good news is that I’m still on the trial which is a huge relief, because I’m feeling a bit better. I also gained a few pounds - the first time that’s happened in quite awhile. The pulmonary doc visit didn’t amount to a whole lot. They are going to up my dosage on some cough suppressants and want my to try a device that sends a pulse or wave down into my lungs to help expel some of the mucous. He feels like the problem is that some of the tumors are pressing up against airways, thus making me cough and mucous gets trapped in the lower parts of my lungs. This causes my gaging cough accompanied sometimes by vomiting (which can be very sudden). I’ve been lucky that I haven’t been involved with any accidents on the road as I’ve vomited while driving three times now. It requires some quick thinking and action in order to avoid a big mess in the car or with other cars.

Thank you all for your prayers, at least for now…things are looking up. I am also working on a write-up from my travels in Europe. Have a great weekend.

On Thursday, I will have a CT scan as well as a surgical consult with a cryosurgeon. I also see a pulmonary specialist. Hopefully we get something figured out that will help make things much more comfortable for me. I can’t seem to kick this nasty coughing/wheezing and weight loss problem. I’ll tell you one thing though…I have some killer abs.

Thank you all so much for supporting me, I could use some extra prayers this week.

I received my 2nd infusion yesterday and all seems well on that front. I am tolerating the drug just fine. My O2 levels are looking better and the doc told me that my lungs “sound better.”  However, I am still dropping weight at an alarming pace. In just 7 or 8 months I have lost in the neighborhood of 45 lbs. I think I am eating okay, but apparently the tumors have been using a great amount of energy. Consistent coughing, occasional diarrhea, and general fatigue haven’t been helping either. I have been put on an appetite stimulant and finding ways to up my calorie intake. My weight is now comparable to where it was at when I was a freshman in high school.
My trip home was great. I got a couple of turkeys and had a lot of fun on several hunts (they tasted great too). Brandy and I also had a nice little road trip to Niagara Falls and Toronto over Memorial weekend.  We hope to make it back to Niagara someday. We really enjoyed it.

I am so glad that better weather has arrived. My spirits remain high but I still need many prayers.