Wednesday, August 26, 2009

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.


  1. Hi there! I will be looking forward to visit your page again and for your other posts as well. Thank you for sharing your thoughts about meningioma. I am glad to stop by your site and know more about meningioma. Keep it up! This is a good read. You have such an interesting and informative page.
    Ninety-two percent of meningiomas are benign, with 8% being either atypical or malignant.
    Approximately 96% of meningiomas occur within the skull, with the remaining 4% involving the spinal column. Meningiomas are the most common type of primary brain tumor, accounting for 34.4% of all such tumors. A primary brain tumor originates from the brain, spinal cord or associated tissues (called the central nervous system or CNS), while a secondary brain tumor arises from cancerous cells that have spread (metastasized) to the CNS from elsewhere in the body.