A better kind of waiting begins.
So, yesterday evening at about 7pm(PDT), I head from my radiation oncologist again. He had had a chance to discuss with the neurosurgeon and they agreed that they did not have enough data to conclusively decide that it is indeed a new tumor. In fact, they agreed that it is most likely NOT a new tumor, but rather some leftover garbage from the radiosurgery (perhaps a collection of fried cells that have yet to be metabolized completely). To get a more definite opinion from them, they need another reference point to compare this data with. So, they're scheduling another MRI for me in about six weeks. My initial reaction was "holy $#^& that's forever!" (It is longer than it took to get into the surgery after the initial finding of the possible tumor.) But then I thought about it for a few hours after the conversation and it dawned on me that, given that they know me now and have spent considerably more time with my information than before I met them, coupled with their professional experience (they do this everyday - often 7 days a week and way more than 8 hours a day - he called me on a Saturday afternoon and a Monday evening, for cryin' out loud) and they said that they were "not worried about it" (direct quote) and that six weeks isn't that long in the development of a tumor. The doc added that I should still be on the lookout for symptoms that are too familiar and to call him immediately if anything like that should come up. But his tone of voice had that "disclaimer" kind of ring to it, which tells me that he's quite confident in his advice. So, I'm glad I'm not writing this from a hospital bed right now and that I get to go to my brother's extremely-after-the-fact wedding reception next weekend. (They've been married for two years now!) So, for now, I'm getting back onto my best behavior about diet and time/rest management. It's my belief nowadays that prolonged high levels of stress are probably one of the most carcinogenic situations we face these days. It's a shame that "prolonged high levels of stress" can be a euphemism for "adult".
And the waiting is over!!!
So, I got the preliminary results back from the radiation oncologist. Good news, they got everything. Bad news, there's something new. It's 9mm x 5mm and in just about the same place. I'll be in contact with the doc Monday morning about the plan of attack. To put it politely, "Shit."
And the waiting returns....
I had my MRI on Tuesday and everything went well. (For all the fear from earlier, it's gotten to be pretty routine for me now. Weird how that happens!) However, I've not heard back from the doc yet. So, we're all in the same boat here, just waiting....and hoping. :)
Today is the first workday that I didn't take a nap after coming home from my half-day at work. I've been working only mornings at my job, but it's been full duty for a little while now. At first, I came home exhausted and so took a nap until about 5 or 6pm. Lately, the naps have been only about an hour or so long. Today: no nap at all. It's 10pm and I'm feeling pretty good. But as I sit here at my computer (for the first time today), I feel that I am indeed pretty tired. (Don't worry, I'll be going to bed soon!) This past weekend I was in the studio as a producer with Kenny Lee and the Sundowners, a really cool blues outfit from Portland. I didn't take naps on Saturday or Sunday, either. I probably would've been able to not nap after work on Monday, but Jai and I went to Faerieworlds and saw none other than Donovan live on stage. We were about two people back from the stage, so we saw him up close. He had great energy and seemed generally glad to be performing his songs for us, even if the pick-up band was missing cues left and right. It looked like they were all having immense fun which made the show a lot of fun.
In other news, I have an MRI coming up that will [hopefully] sound the all clear. That happens in about a week. I'm not sure when the results will be known to me, but as soon as I find out, I'll post about it. Let's all hope!
Life has been crazy lately. I've been back to my job at a half-time level. But the schedule is still a full-time schedule. I get to work at 8am then I'm done at about 12:30. Then I get home and nap until about 4 or 5, depending how much sleep I need. Then I have a normal evening. What a "normal" evening means is that I try to catch up on housework, music work, social work, etc. that has been unattended for the last four months. (OMG, it's been four months!?!?!) I need to slow down again. I also need to get stuff done. Somehow the mathematical expression of "≠" comes to mind. It's not that I'm not happy, because I am. I'm just easily frustrated with how little I can do this far out from the radiation. I had more energy a month and a half after the brain surgery than I have now. It just feels like I'm holding on to a bullet train (on the outside of it) and hoping I can wrench myself back into my seat on the inside of it before my grip fails. I know I need to know that it's not a bullet train and it's just my expectations of what I think I should be able to do and how what I actually am able to do right now is much less than usual. But it's still frustrating. :\
But good things are happening. I've been working with my friend Jon at Pyrate Llama Recording Studio on an album by Evrim. The album is sounding really good. I've also been trying to work on an album of music by Brittany Woods that is doubling as my Master's thesis. That's going much slower, but that's about to change. Jon at Pyrate Llama donated a block of studio time to the auction that happened back on April 7th. My friend Alan snagged it up and his band, Kenny Lee and the Sundowners will be recording there soon. If I understand it right, I'll be running the session. My friend Eldon Hardenbrook, who is an amazing songwriter, is also working on an album and I have been helping him with that, doing guitar solos and giving feedback on his sketches. The Portland Jazz Connection, who were the small combo that Jai and I played with at the event on June 30th will be recording soon, too. So...now I look at it all and think to myself, "The dream begins to emerge and you're complaining?!?!" But the truth is, I'm tired and just whining about that. Everything else is cool. But I am tired of being tired.
Thanks again to everyone who helped out on both of the fundraisers! They have been wonderful spiritual boosts to me and have also been instrumental in helping Jai and I get through this tough and very weird time. I tend to get the spotlight for this process, but Jai feels all the frustration and pain with me. She also feels the gratitude. We thank you all and I have to add, "Thank you, Jai, I love you!"
The Koncert for Kevin was this evening. I just got home. It was a raging success in that everybody seemed to really enjoy themselves and the event. I know that I had a bunch of fun!! I understand that the fund raising was successful, but I don't know the grand total. There are soooooo many thanks to go around, If I start to list them here, you won't finish reading this post until next Tuesday. But I especially wish to thank Tom Robinson for a) instigating it, b)planning it, c) keeping the plans rolling (aka, bringing together people and personalities that would never otherwise work together) , d) believing in me enough to have me in his combo group, and e) keeping the event running smoothly. Thanks Tom!!
The Koncert for Kevin is this Saturday in Portland, OR. It is at the West Hills Unitarian Fellowship located at 8470 SW Oleson Road. There will be lots of wine. Loads of it. There will be a bunch of very cool stuff available at the silent auction. There will also be two jazz bands. One is the Carroll Raumm Swing Orchestra, and the other is a quintet called the Portland Jazz Connection. I'll be playing in both bands! You can spread the word via Facebook with this link. I would like to thank the small army of people who have volunteered their work and time to this effort. It promises to be a very fun time! There is a $20 suggested donation at the door. However, nobody will be turned away.
So, there have been several references to this when I describe to people how the stereotactic radiation treatments work. It's true: It works thusly:
A couple of weeks ago I got an email notifying me of a plant sale that was happening in Portland for the Koncert for Kevin effort. As I looked through the posts below, I embarrassingly notice that I did not post about it. My profuse apologies, but I got the report from it and it was a definite success, despite my error. So, I publicly say, "Thank you!" to Barbara Blossom. Her awesomely blossoming blog is here: http://blessingsfromthegarden.blogspot.com/.
So this is the machine that's literally killing my cancer with a laser. I lie on my back and my head goes into that clamp thing. Then they put a mask on me, just like in the video below, and give me a thing to put under my knees. I asked them to just strap my arms to me since there's no place to actually put them. The mask holds my head in place quite firmly. They play the music that I selected and I just lie there and enjoy the music. The little things like arms on the side are the CT-scanners that line up the marks on the mask so that the precision is enforced. The big circular thing near the ceiling (facing down) is the one with the power of gamma rays. It zaps, but it's much quieter than the MRI. The four blasts come from different angles, and the table I'm on and the giant machine both move to adjust. The whole thing lasts about 45 minutes, just long enough to make it so that I'm a little light headed when I sit up after the treatment. Then, I go eat a little yogurt to calm the weirdness in my belly, for which the doc gave me some nausea medicine to take about an hour before the treatments, and it works great.
One more, then some scans to see if it took. Here's hoping it works! ;)
For Sheryl's comment (below) about it looking like a robot from sci-fi movies, I believe we have here the great grandson/daughter of Robbie the Robot.
It's me, Kevin, but with a brain tumor. Disclaimer: I have a very dry and twisted sense of humor. This is a scary situation. The jokes ("tumor humor") could be a little dark from time to time. I intend to keep this rather interesting for you, but if I get a "how could you SAY that?!?" response from you, know it's just, well, I hesitate to use "gallows" humor, but I don't have better phrase for it. Enjoy, and thanks for your support through this time.