Oligo Woe Is Me

So it’s been a while. I apologize as it’s very diifficult to write. It’s very difficult to speak. But I’m in here. All of me. Its hard to communicate. I sign my name with an “X”. I do better with my iPad, which has been indispensable, but I have a frustration factor of 7-9 when trying to write something. I have not been writing as a result. My novel is on hold and my reality-based short stories are rare.

I will eventully write back everyone who has been so kind in contacting me. It’s just that so many have contacted me I have to do them in order. And with the writing problem…you can see where I’m going with this.

The tumor is mostly dead. As it should be. After all the trouble it’s caused. It will always be there in some funtioning way or another…hopefully in a dormant stage. The problem is the huge amount of swelling of the good tissue around it. It’s huge. Its three times a huge as the tumor itself. Which has other complications. It changes every time I go in for an MRI. Which is what good tissue is supposed to do. Is just that it has prominently compromised my speech, my typing, and my right side musuclar functions. I walk with a cane for any distances. I like to call it my walking stick. It just sounds better.

So I have three options:

-I wait. I wait until the swelling naturally goes down. This could take 3 months or 3 years.

-I opt for surgery where they take a menlonballer and scoop out the dead tumor tissue making room for the swelling to run it’s natural course while having room to breathe. There are minor risks with major impact. After all, they are operatiing on my brain.

-I try a clinical trial that has a chance of reducing the sweling is somewhat short order. Like 1-3 months. Like most clinical trials there are side affects.

I feel otherwise normal. Well, as normal as can be. I don’t get headaches, I don’t feel any pain where I need to take something. Of course I’ve got my daily pharmaceuticals in adbundance. I stopped working out which is bad. But I get my exercise by being outside and active while the weather is good.

It really is my inability to communicate. It’s been frustratiing. For Kasey, for my kids, for anyone. I don’t mix in with casual conversation, my wit is not there, and I just tend to be quiet. Which you know isn’t me. I can’t go into a store without someone to interpret for me.

But I do get compliments on my mohawk. So that’s good.

Rob

…by the friendship and support from everyone around me.

A bunch of friends have put together a raffle where someone will win an iPad 2.  The proceeds will go towards helping us out in a couple of ways.  They have also setup and way for others to get involved with selling the raffle tickets within their own circle of friends. 

See the details on the link at the right under “Want To Help?” 

Thank you friends.  Thank you.  Thank you.  Thank you.

Peace and love to all,

Rob

(Posted from an iPad)

So yesterday I was informed that my stay here in Valhalla was to be 33 sessions of radiation…not the 30 originally indicated. Somewhere there was a communication breakdown. So here’s what that means:

Since it includes another weekend (as well as another detail I won’t bother explaining), instead of getting home to Vermont on Saturday the 19th, now it’s gonna be Friday the 25th.

Another 6 days away from Cooper, Sadie, and Zenfish. Not even to mention my fancy massage lounger. (Kasey will spend some time down here with me so that’s good)

To unexpectedly extend my lease on where I am staying is another chunk of cash of no small significance. Yikes. It’s a good thing I planted that money tree last April. I wish I had gotten the $100 bill seeds instead of the $20 bill seeds but I didn’t want to be greedy.

6 more days to accomplish nothing.

6 more days of mediocre coffee.

6 more days before I can get on with the next chapter of life.

…sigh…

Well, no point in getting my undies in a bunch. Just gotta shine it on. Shine. It. On.

Shining it on from Boston…with enormous volumes of peace and love.

Namaste,

Rob