Jonny May

What started out as excitement over my current trial drug ended in disappointment yesterday. I will no longer be a participant in the XL880 protocol. I really don’t know what to think about it. It was promising at first according to my doctors, but I always suspected that underneath it all that I wasn’t quite getting the full report. In between each CT scan (when compared to the last one), growth was so minimal that it fell under stable disease. However, I demanded to see my latest scan compared to the very first one I had in Detroit. It showed a growth of 20-30% in the largest tumors used for reference. It has also been explained to me that there are a few new lesions among the existing hundreds in my lungs (not a pleasant thought).

This isn’t the greatest news, but this could be the break that I needed from treatment. It seemed to be taking a toll on my body and this could be an opportunity to recover. My doctors in Detroit are also willing to find me something worth my while in Detroit if possible, and they will contact all the right people to make sure they are giving me the best shot at success. So as of right now, I’ll be taking a few weeks off from any kind of treatment and will then be looking for the next step. Hopefully this will be the last one that will result in remission.

Keep praying!

I had another appointment in Detroit Monday. I am now being treated for the mold, so hopefully I can kick this nasty stuff before the trip overseas. I have still had problems with chest congestion and trying to expel it would occasionally make me vomit. I have been losing some weight and am probably somewhere between 180-185 (down from 200 around x-mas), normal for me usually runs around 210-215. If you haven’t seen me in a few years I would imagine that I look thin. I’ve also been prescribed some other meds to help with nausea and congestion. That puts me at 16 pills (others if needed) and 1 shot a day, along with a patch (for congestion), an inhaler, and O2. I can barely keep it all straight. I feel like a walking chemistry lab.

Yesterday I felt as good as had in awhile so I am encouraged. The school work is piling up, but I think I’ll find a way to get it done. My profs understand what is going on. It is amazing how busy it can make you when you take medications almost around the clock, scheduling tests and dr. visits, and dealing with insurance companies. It’s an education in itself.

I also want to thank everyone for supporting me. The calls, the cards, the emails, etc. really mean a lot. I bet I have made Hallmark quite a bit of money…
God Bless!

Unfortunately, I was advised to go on oxygen. While this will hopefully make me feel better, it is an emotional drain for me. I will need an oxygen unit at home and portable oxygen. I pray that this is just temporary. No longer can I hide the fact that I’m sick. I took pride in that. When people look at me, unless they know outright that I have cancer, they cannot tell that anything is wrong. But don’t worry, I’ll be alright and I believe that with the spring will come better times. Please continue the prayers and may God bless you.

I’m finally feeling better. I met with an infectious disease doc on Thursday and it went well. It’s really hard to beat the team of doctors assigned to my case in Detroit. Even though I feel better they are going to increase my dose of antibiotics, and my PET scan (that will measure how active the tumors are) will be postponed. They thought with recent lung infections that it may compromise the results. My appetite is coming around, I was losing weight at an alarming rate so it will be important for me to eat often and eat well.

School is going okay. I’ll have my work cut out for me though, but that’s alright. It’s been a long winter up here even though there are a good 2 months to go before spring really reaches here. I will be very excited when it finally arrives.

As always, thank you all for your continued support.