Bittersweet Week

I woke up to the news this morning that Sen. Ted Kennedy succumbed to his brain tumor. I immediately burst out in tears. Not because of his politics, but because he was a fellow brain tumor patient.

At MPRI I had the fortune of meeting a young man about 2 years younger than me. He had the same type of malignant tumor (glioblastoma multiforme) as Kennedy. As opposed to a meningioma - even an atypical meningioma, a GBM, as they are commonly referred to, is NOT the kind of tumor you want. This young man had already been through 2 surgeries, full brain radiation, and was in the process of completing his course at MPRI. Then he told me he was going to try an experimental vaccine that prods the immune system to fight the cancer. I believe that Kennedy had done the very same thing. I believe there was at least one other GBM patient while I was at MPRI.

What sticks in my mind with this guy was how normal and patient he was. His dad was with him everyday and you could tell this guy was under stress by the look on his face. His son, on the other hand, was the complete opposite.

I think about this guy a lot, but today especially it's hard. I've been crying on and off all day and I really wonder how he's doing. Whether he's got the vaccine. What his prognosis is. But for the grace of God, I could have been him.

On top of this, I met with Dr. Henderson, my Radiation Oncologist up here in Indy today. I was already emotional given the whole Ted Kennedy news today. I tried not to tear up, but I did when talking to him, the intern, and a tech intern (at least I think that's who she was) about how the beaming went. This is the first time I've seen him since the end of treatment, and he did most of the gruntwork in plotting out my treatment, so it was an emotional meeting for me. We also talked about some of the lingering issues (besides being so damn emotional), which is always hard to talk about, which made me cry even more. It's so embarrasing to not have control over your emotions. It's those last 10 treatments - they really knock you down. He said that happens with a lot of people. The first 28 or 30 treatments are a breeze, and when you go over that, you really do put your body in a place that not a lot of people have been. It's a pelting to the brain and everyone reacts differently.

I did learn that the intense pain that I'm feeling by the screws from the craniotomy is the result of the beams being more "focused" on these areas, and it's not uncommon to have more pain around the "hardware" in your head. That makes me feel better. And he gave me something to help with the pain, which is good. The good news is that he said "in a few months, you will feel a lot better. You've just got some more healing to do."

To top everything off, though, I had to renew my driver's license because mine expired in June. I didn't even know this until I was at the airport going to Maine. So yesterday, my mom and I went. I looked up on the BMV site to see what they were going to do, and according to the site, all I had to do was a vision test. No problem. As long as I didn't have to get a new picture.

Well, wouldn't you know it. The lady helping me said, "just step over here and we'll get your photo." I was mortified. Luckily, she took me to the FAR camera setup. I hemmed and hawed for a few seconds, and then I said to her, "I'm literally missing half my hair. Do I HAVE to get a new picture, or can you use the old one?" She said no, and that I even had to take off the scarf. And you know the BMV. By this time, half the place was looking over at me. So I took the scarf off and sucked it up. I mean, I have to have a valid license for a number of things. And now I have a daily reminder that my head looks like it does. Great. I'm totally mortified.

Not a great week for Jenny.

My thanks

Kevin here! Who knew what a ride we were in for. This incredible journey began on January 16th, 2009 and a major chapter of the book closed on July 10th, 2009. Jenny completed her final treatment at the Midwest Proton Radiotherapy Institute (MPRI) on Friday! Her first treatment was on May 14, 2009. She had a total of 38 fractionated proton beam treatments. Her total dose was 68.40 cge's. While I could not take her down for every treatment, I was there in spirit cheering her on everyday. My mother-in-law, father-in-law, Father, great friends Laura and Paul Avgerinos all helped with the daily transportation. I could not be more thankful for all of the help!

But really, my thanks goes out to all of the wonderful folks at MPRI. In the picture above is a small portion of her treatment team. If I could have taken a picture of everyone I would have but they were helping others in need of their special care! These folks are the true hero's, they make all of the difference in the world. My wife would tell me stories every evening about her team and what was new that day. Her physician at MPRI, Dr. Allan Thornton (in the tie), is a true pioneer and a gifted physician. His research on the use of proton therapy has undoubtably touched countless patients and the impact of his research will live on for generations. But the real hero's are the radiation tech's and the nurses that handle the day to day care at MPRI. They are all saints in my book! They touch the life's of so many each and every day.

So now begins the next phase of this journey, we are not sure what we are going to do with the blog but we have a few ideas! Don't worry, it's not going away! Thank you everyone for your thoughts and prayers throughout this entire ordeal!

Kevin

The Final Countdown

One treatment left. No tears shed for a couple of days now. I'm actually totally stoked for tomorrow!

We'll post some celebration pics tomorrow or Saturday at the latest.

Open Letter to Decadron Part II

Dear Decadron,

I knew I'd see you again, you hulking steroid, you. After being in tears twice last week at restaurants because the noise was overwhelming, I knew I was in trouble. Then, after being in tears trying to arrange an unexpected MRI (and drivers down to Bloomington) on Thursday, I really knew I was in trouble. It was just too much for me to handle. And those who know me know that definitely NOT how I am.

Then the headaches really kicked in hard. And I broke down and called MPRI. Now that I started taking you yesterday, here I am with headaches that are gone. But replacing them will be bone crushing aches from my back to the bottom of my heal. And night schweats. And then the dreaded decadron withdrawal when this is all said and done.

I was wondering how I was going to make it through the next 8 treatments (I'm thisclose to being done!) without you, but I was going to try. So instead of wanting to take my time closing the deal with the proton beam to help manage my swelling, I'm now anxious, anxious to be done with you and the radiation.

Atypical meningioma - from 6-8 weeks out of work to going on 5 months!

No News is Good News

I just realized that it has been a whole week without a new post.  That is actually good - no new drama!  Treatments are going well.  Kevin just noticed tonight that I'm starting to get just a little redness on the right side of my face.   Things will probably start to get uncomfortable in the next couple of days, so I'm just trying to appreciate feeling, well, not too bad at the moment.

My days are pretty much the same.  Try to get up at a decent hour.  Get some food into my stomach.  Then go down to MPRI.  My appointments are usually somewhere between 11 and 1, although that can vary slightly.  Then get something for lunch.  Then get back home mid-afternoon and take a nap.  After dinner I try and get some work done on the computer/check email, etc.  But I've noticed that I really can't be on the computer much since starting treatments because it gives me a headache.  So all of you who have written me emails...thank you!  I have read them all and will get back to you as soon as I can!