Jonny May

First of all I want to say rats…I was just scheduled for a free massage at this place, and I was about to get one when they discovered I was a patient and couldn’t do it for liability reasons, darn. Anyway, I had tests yesterday at the NIH/NCI and met with a doctor to discuss clinical trials. It went okay, there are a few options, but I’m more interested in what the surgeons say that I meet with tomorrow. I have a CT scan here in a couple of hours. I received some bad news, but better news later on. Both had nothing to do with what I’ve done here. The Doc in Pittsburgh said it would be impossible to ever surgically remove all of the tumors in my lungs, however it would be possible to take problematic ones if it comes to that. Good news is that I got a call about a brand new treatment that shrunk tumors in 3 different patients with ASPS! It’s the first time that’s ever happened with this disease, and since it happened in 3 people…it’s very unlikely that it’s a coincidence. If they offer those drugs here that would be super, but if not, then I guess I’ll just have to go elsewhere. Regardless, I’m excited! I will still have surgery to remove the primary tumor though so I hope I get good news with that and my recovery time will be kept at a minimum, at least I can start treatments before surgery. Thanks for your continued prayers, looks like they are working!

Hello everyone. Well it looks like I got into the National Cancer Institute after all. They told us that the wouldn’t take my case at first, but some important people spoke on my behalf and it appears that the squeaky wheel got the grease so to speak. However, I’m still debating on where to take my care to next. I have an appointment on the 28th at the NCI, but I also have connections with a highly recommended team (including an excellent surgeon) at the University of Pittsburgh Medical Center. I suppose we’ll have to take a look at both and see what the best option will be. From what I’m told the team at the NCI seems hesitant to go ahead with surgery on the main tumor, and I want it done asap. If they ever think that anything is too risky I will consult with my Pitt connection. The Dr. there does surgeries that no one else will do and simply kicks butt. When I was in NYC I met a girl that had a couple of tumors in a very tricky spot close to her heart, well this surgeon did the surgery that everywhere else refused to do and said it was a piece of cake.

I am feeling a bit better as of late, my appetite is getting a little better too (just in time). I’m also getting hair back on my head.

It looks like things will come together soon and I’ll be sure to post again to let everyone know what is going to happen. I will most likely be scanned again too. I can already tell that the main tumor has been growing, and I am going to request for my head to be scanned as well for peace of mind (haha, didn’t realize the pun there). Thanks for your continued thoughts and prayers.

My apologies for not posting in such a long time. It’s been a heck of a month so far. As you know I went to New York, and it was a good trip. My folks and I really only got to spend 1 day to do sightseeing. On Monday the 6th we attended the Gala for The Alliance Against Alveolar Soft-Part Sarcoma (very informative). It was definately worth the trip. I met several other patients and several doctors. We learned so much and feel much better about the direction of my health. One thing I’ve discovered is that by being an active patient, you improve your chances greatly. Doctors don’t always have all the answers. I now have options in my care. Unfortunately, we recently learned that we struck out with our first option of getting care at The National Cancer Institue (NCI) with the National Institues of Health (NIH) in Washington D.C. I won’t be having surgery or care there, however, the lead researcher for ASPS still wants me to have my tumor sent there for study when I get it removed. Currently I am waiting on word from Pittsburgh (great surgeons there) and if that doesn’t materialize then I’ll go back to Mayo (for surgery only). It just so happens that the researcher I mentioned earlier has a daughter with the disease. He worked at the NCI for over 20 years and never heard of ASPS until his daughter was diagnosed…that’s how rare this thing is. It is unfortunate for him that his daughter has the disease, but at least someone is finally doing extensive research to combat it.

I had just made it back home from NYC, when my uncle had me fly out to Atlanta for the weekend. We caught a Hawks (NBA) game on Saturday night and the Browns/Falcons game on Sunday. I had 3rd-row seats close to midcourt for Saturday’s game and 10th-row 45-yard line seats for Sunday. There was a special surprise for me on Sunday as I had a pregame pass for on the field before Sunday’s game…I also got to meet Jim Brown and got his autograph, so that was really cool. Unfortunately during the trip we got word about my Uncle Fred and I am flying to California tomorrow with dad for the funeral. He will be missed.

I think I’m finally getting over this illness. I’ve been sick for a good part of the last 12 days. It appears that my temperature is finally going down. It’s about time! We leave later today to start our journey to New York. We’re also stopping in South Bend Saturday to catch the ND game. I don’t know if there will be time to stop in Toledo even though we’ll be passing through. The plan is to make it to New York Sunday night and leave Tuesday. We’re staying 2 nights at a hotel close to the Empire State Building and Madison Square Garden. I had my medical records sent yesterday to a highly-recommended doctor from the National Cancer Institute in Washington, D.C. Hopefully the ball gets rolling soon along with a promising new plan of attack.