Jonny May

My first chemotherapy was a year ago today. I feel yucky just thinking about it. I have my dates a bit jumbled together since it was a long process for an official diagnosis. Sometime late last May I was told I had a “possibly malignant tumor.” In early June it was confirmed that I had cancer. However at first it didn’t appear to be as serious. Sarcomas, while rare, if contained aren’t all that bad. If surgery is possible (and I understand that most of the time it is) you have it removed and the majority of the time that will take care of the problem. Unfortunately, instead of getting a date for surgery, I got a call to say that my CT scan showed tumors in my lungs. I was told that the chance of a sarcoma spreading like that (with the size of my original tumor taken into account) was 20%. That was probably the scariest moment in my life. I knew very little about cancer, but I knew that metastisis was very bad. I thought it was a death sentance. The surgical oncologist (this was at the University of Toledo’s Medical Center) was going to have me undergo a surgery to remove a tumor from one of my lungs for a biopsy. It was then that my parents and I decided to seek more specialized care at Mayo. When I arrived, I discovered that I still didn’t have an official diagnosis. The needle biopsy slides from my leg were sent to Atlanta by my doctors in Toledo. I wondered why the heck that was necessary. Somewhere around the 26th of June after over a week or so of testing, I was told I have Alveolar Soft-Part Sarcoma. One of the rarest forms of cancer there is. I then knew why my biopsy slides were sent away. Apparently no doctor in the Toledo area knew what they were dealing with, they’ve never seen that before. I wonder why they weren’t sent to the Cleveland Clinic. Perhaps they were contracted with people down in Atlanta. Anyway, a chemotherapy regimen was recommended by my Mayo oncologist and we started as soon as we could. I wish I would have known better.

So here I am a year later. My emotions are very mixed. While this last year was hard on one hand, not everything that has happened this last year has been bad. It’s hard to explain. Although sometimes I still hold out hope that it’s all been a bad dream, and tomorrow I’ll wake up and resume the life that was stolen from me. Occasionally I do feel that way, I’d be lying if I said that I didn’t. I am a better person now though and at least I have that. I’ll leave you with a couple of sayings that I think are appropriate for this time, one from a song and one from a movie.

From now on I’ll do my dreaming with my eyes wide open, and my looking back with my eyes closed. And a personal favorite…you can wish in one hand and crap in the other and see which one gets filled first.

I hope that last one made you laugh. Good bless you all and have a very happy and safe Independence Day.

Hi all. We still don’t have many answers. We’ll hear soon if we can get started on the drugs that we’ve been looking for (the combo is on the open market). We should get called in the next few days. If not, there are a few trials that we’ll look in to in a few months when they open. It appears that we’ll still retain basic oncology check-ups here. Mom and I will leave for South Bend in the morning and will spend Wednesday night there, then it’s off to Dayton for a wedding. I may take a day or 2 to see some friends. I’ll let you all know as soon as we know more…thanks for your continued prayers.

I’ve been slacking, I know. It looks like I’ll have a break from any treatments for awhile. Trials at the NIH won’t open for cases like this until July. By the way the surgeon was helpful, although he said surgery at this point is not an option. If he tried to get all of the tumors out (and it’s been described to me that I have “many dozens”) I wouldn’t have any health lung left. However, he said if a few give me problems (and it should be some time before it comes to that) he could take those out. He said he’d have his eye on me.

It will be hard, but I’ve got to go up to Mayo and take care of a few things. While there I will touch base with my original oncologist. From there I’ll go to Ohio for my cousin’s wedding. We’ll leave in about a week.

Before I go, I’ll leave you with this tidbit:

I feel sorry for people addicted to pain killers. I’ve been warned about this being a cancer patient. I know of people that really got hooked on the strong pain-killing narcotics. Personally when I’ve been in a lot of pain, I didn’t get any of the loopiness when taking a drug like oxycotin. However, when in slight pain…you get kind of stoned.

I really think it’s sad when people do drugs for the sole purpose of getting high. Is there nothing else they can do to feel good about themselves? I realize that not everyone grew up the way I did, or have different genetic makeup making it harder to overcome additcive substances, that’s why it’s so sad though. I also get a lot of comments from friends saying, “I bet you get some sweet drugs” or, “do they let you smoke pot?” Um, no. I’ll take stuff when I need to. Why not go for natural highs or rushes? These include for me…

- being on ND’s campus on a football Saturday and seeing those gold helmets rush out onto the field

- fooling mother nature and calling in a wild turkey tom that gobbles and struts just a few yards away without seeing you

- watching a beautiful thunderstorm on the plains (as long as people are safe)

- evey once and awhile getting out an audio tape and listening to an old broadcast of one of my games (although I’ll try to avoid being like Uncle Rico in Napoleon Dynamite)

- and as Kenny Chesney would say, “that first long kiss on a second date”