Tuesday, April 21, 2009

Post 18 - Finale

OK... I suck.

I have been VERY remiss about posting, and some of you are concerned enough, and interested enough to actually email and ask...

1) Thanks for your concerns
2) Thanks for making me feel like crap for not keeping this blog up to date.

Here are the highlights.

- I am technically in re-mission. Cancer is "below detectable levels." This means that by normal means of detection - PET and CT Scans - they would be unable to see the cancer. Apparently to be picked up by these scans, there needs to be something like 1,000,000 cancer cells clumped together. While I may have several million cancer cells left in my body, they are spread out enough so that they are not detectable on scans.

- Had my final chemo treatment just last Friday - April 17. I can't wait to start to feel normal again. Heck, I can't wait to feel a "regular tired" again. Pretty much right now, I could describe any waking state that I'm in as tired/worn-out.

- Stilled signed up to run in the 5K at the end of May -- May 23rd down in Wrightsville, PA for anyone who wants to come and watch or participate.

- On May 7th, I go down to Johns Hopkins to talk to their oncologist team about a clinical trial for my follow-up treatment. The treatment is in the Radioimmunotherapy family of treatments. More to follow once I meet with them.

- On the whole... chemo was not as bad as I thought it would be... however, I don't want to minimize the experience. This is something that I would not wish on anybody. However, if you are faced with this, the only thing I can tell you is your attitude will be the biggest factor in determining how well you physically and mentally handle it. Chemo will take you places both physically and mentally that you don't want to go... Accept it, adapt, and overcome... That's all I can say.

Oh... As part of the this whole trip down to Johns Hopkins for the talk about the clinical trial, I was given all of my PET and CT scans on CD, plus all of the clinical interpretations of the scans.

I'll post another entry with some of the details, but I'll tease you now...

Some of the phrases included in the clinical write-ups:

"Aforementioned anomalies present in the brain."
"absense of the carpus callosum."
"Recommend follow-up MRI of skull area, to include a complete scan of the brain."

You see people, I'm a walking medical freak show... I already knew about this particular abnormality.

The carpus callosum is the network of nerve fibers that connect the right and left hemisphere of the brain. While I don't have a complete absence of this network, I have what is known as a hypoplasia of the white matter or carpus callosum.

Hypoplasia is a condition whereby you have (or at least I'm told I have) the correct total amount of white matter (nerve fibers), but my white matter is scrambled. I have more than the usual amount in parts, and in other parts I have none.

While they can't tell me with certainity what issues this causes me, we do know for a fact that this is the condition responsible for making me blind in one eye. The spot where my optic nerve would normally attach to the nerve fiber network, I have no white matter, so there is no physical connection to allow my optic nerve to transfer what the eye sees.

I am, however, told that I'm very lucky in the sense that the majority of people with this condition have some level of learning difficulties and/or mental retardation.

All obvious jokes aside, I thankfully do not suffer from any of these types of issues.

Again, I'll post some of the actual quotes when I have the papers in front of me.

That's all for now.

See ya later.

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