The MRI was today. I'm glad to be posting. I felt great about it [the MRI], though I knew there was a greater than normal risk, due to the pacemaker. But they sent some guy in to have me sign a paper that said I understand the risks who seemed far less at ease about the whole thing than I was really comfortable with. So, the first part of the MRI, I kept thinking something was feeling weird, but was recognizing it as anxiety, but I wasn't completely sure, and and and and and and.....so I said something about it and the tech replied with the fact that if nothing had happened yet, it wasn't likely to do so. When they asked about claustrophobia before the procedure, I told them that as long as I can breathe, I should be ok. But the aural space was too small and I wasn't prepared for that. Those repeating noises were almost too much. A CNA was telling me that her son really was into music. I wanted to tell her about Edgar Varése and his Poeme Electronique from 1958 and how the MRI was similar to it. (Listening in headphones gives a pretty accurate depiction of the 40+ minutes I was in there. Also, listen with a cheap football helmet on). Not much fun, but hopefully it gives the neuro a welcome bit of detail to work with. No results or anything from the MRI just yet. I have a copy being sent to me, but I don't know how to read them, so we'll see if I can make any sense of it. [The Varése piece falls in the category of 'tumor humor', in case you're wondering "oh the audacity of someone to put something that sounds like that on their blog!"
I have to admit it's hilarious that the [previous] post with the complete lack of verbiage gets the most commentary. I should probably learn something there, but I'm just going to be grateful for my extraordinary gift of procrastination on that one. ;)
So, here it is:
The surgery will occur here in Oregon and on March 8. This is "Plan A" for everyone that's been reading regularly. I've been referring to it in jest as my "hair appointment" since they're going in through the cranium and so will have to have a clean spot to take out of my head. Good news: I don't have to be awake during it. Expect some cool photos as I prepare for my "terrible haircut" (the neurosurgeon's words). Oddly enough, that reminds me that I forgot to ask her if I can get video of it so that I can add sound effects and music to it afterwards for the hilarity factor (not to mention the Youtube meme traffic!) There's so much space for musical puns and references to movies and other musical arts, not to mention a chance to try my hand at foley (definition of foley here). mwahahahaha
While the plan is now in effect and the path ahead is more clear, I notice that I'm essentially still waiting. Which, while I have plenty of normal life stuff to think about, do, and to otherwise occupy myself, thoughts still run into the worry realm, which lies just beyond that last tree in the forest of curiosity. So, as I ponder the what-ifs and geez-I-hope-nots and stuff like that, I find comfort in a song that my professor in grad school introduced to me. It's by a gal that I was previously aware of who spent a lot of her career-forming years in Kansas City, though she's from Arkanasas. Her name is Iris DeMent and the song is "Let the Mystery Be". I'm ready to quit worrying and start healing, thereby keeping the mystery completely intact.
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Today I am highly grateful for the persistence and tenacity of a couple of people, one of whom I've never even met. First, I'm humbled and honored to have been offered by two separate musical groups to have fundraiser concerts put into action for me. The leader of one of the groups I've played with offered his services in this manner right after I announced the news to another group that we both play in. The news was still fresh and I was still reeling from it and so I kinda let things slide on it. I got an email from him today and I called him back. He's going to head up a committee to work the logistics of a fundraiser in Portland with a jazz theme. If you would like to help out with recommendations of venues, offers of calling people to line up various logistical stuff, etc., please click the 'contact' link at the top and let me know. I'll put you and him into contact with each other. I'm not asking for anyone to take on a full-time job, but if you have some ideas or are familiar with this kind of process, it would be of great help.
The other persistent and tenacious person is the mother-in-law of a friend of mine who has gone through a very similar situation. She emailed me and I was caught up in my freak-out. As things started to calm down a bit, I called her and left a message. She called me and left a message. Then this evening she called me again and we talked for about an hour. She shared the details of what she experienced after her surgery - both the horrifying (having a headache for six weeks) and the beautiful and hopeful (the fact that she was alive a coherently talking to me at all) details. She also welcomed me into one of the many exclusive clubs you never ever intend to join, where the motto is "it's better to be seen than viewed".
The other band that is planning a fundraiser here in the town where I live. The band is called Majik and Jai plays in it. I will post more details about that as they become available.
Given that I finally get to see the neurosurgeon tomorrow, looks like this picture I took a while back (before I knew I would really need it) is today's photo du jour. ;)
So, I see the new neuro on Monday for the consult. The last couple of days have been really stressful. The WTF? factor has faded away and now I can think more rational thoughts. Thoughts like: What could go wrong? What will recovery time be? How much work will I miss? What kind of rock and roll street creds will I gain if I suddenly develop a bit of a British accent? What if the new neuro isn't at all different than the old one?
A plan has developed that includes a back up. Plan A is going with the new neuro. I can recover at home in Oregon and all will be well. Maybe after I regain some strength I can spend a week in Southern California and "help" Jai help out her 93 year old dad or something while I've got short-term disability insurance to help me out. Plan B is to go to LA for the surgery. On a lark I emailed Cedar Sinai last night and at about 9:05 this morning I got a phone call from them. They were able to set up an initial consult on Monday. Yeah, Monday the 27th. It was exciting and interesting, if not refreshing, to have such a quick response. After some further questioning, I learned that they didn't want to schedule an initial consult without the MRI data. I said I would call them back. Jai and I made up a list of questions and then called Cedar Sinai back again. The basic administrative questions (do you take my insurance, etc.?) were answered quickly, confidently, and in a friendly manner. We came up with a few clinical questions and the gal went to ask a nurse. When she came back, we had a few more so she forwarded us to the nurse. We had to leave a message (it was 4:30pm on a Friday). Seems cool and I'm not going to be too surprised if I get a call tomorrow morning.
Two things I've learned today: 1. Stop calling and asking questions of medical professionals on Friday afternoon if you don't want to wait for an answer. 2. Jai and I wrote down all of those questions we came up with so we can ask them again on Monday, aka: we know what questions we want to ask. So, if things are cool on Monday, then excellent, we'll probably be in the operating room on the 5th or soon thereafter. If not, we'll be flying/driving to LA on the 3rd or maybe the 2nd after the MRI and be in the operating room on the 5th or soon thereafter.
Sometimes this seems like a big sea tanker barge of bullshit to deal with. The picture below is one I took this morning while I was at work. Suddenly, it's all worth it.
So, I didn't hear from the radiologists on Tuesday. My cardiologist said to call him at noon on Wednesday if I didn't hear anything. Lunch is from noon til one, so I called him back at one. Apparently, the ability to shield a pacemaker from MRI is at the confluence of several specialties, most obviously radiology and cardiology. The delay here is that there are several people to schedule (read: herding cats). The gal on the phone from the radiology place was really nice and even apologetic and empathetic about my wait. That was refreshing! Anyway, a supervising doc has to give the final ok for the MRI to, so there's a chance that the "margin of comfort" that the docs have that the process will be successful has to be there or no MRI for me. That shrinks the "margin of comfort" on my end. The neurosurgeon isn't the one ordering the MRI. My primary doc did the order via my cardiologist in an effort to expedite things for the neurosurgeon. I heard from the neuro's medical assistant that she often does these surgeries with just the CT scan, which is the set of images that I got when this all started. Maybe going to have another CT scan to see what difference there is over this amount of time will give her more than sufficient info. Here's hopin'! All that said, things could be worse:
I visited my cardiologist for my routine pacemaker check-up today. He had been working on getting my MRI scheduled with the people who can shield the pacemaker from all of the magnetic fields. Normally you can't have an MRI with a pacemaker for danger of the pacemaker parts, especially the leads that are healed into the heart muscle tissue, flying out of the body and attaching to the MRI machine. Magnetic Resonance Imaging. I wonder if it looks and sounds like this?
I want to express my thanks to all who have read and commented here. The support is tremendously helpful and it gives me a reality check about the support that I have. I hope that everyone can realize that they, too, have many many many people who love them. Remember that, because it's truly amazing. Thank you!
There's no news to report today. Tomorrow I should know for certain if an MRI really is possible. There's been a little confusion along that line, but I have a routine check-up appointment with a cardiologist for my pacemaker tomorrow. He's the one who mentioned about the possibility of the MRI with a pacemaker, which is generally a no-no. It's possible that there is no potential for an MRI, but I'll know for certain tomorrow. ;)
So, yesterday was weird. I had stayed up late the night before working on some music (for my job - YAY!) and also I'm not feeling quite myself. I might have a little cold or something. I ended up coming home from work and sleeping very deeply. But from the point of the tumor, I've noticed a slight decrease in my patience and to an even smaller degree, my concentration. It's just a little bit, but after knowing about the tumor for a couple of weeks, I've reassessed a lot of stuff and the tumor accounts for a lot of the tiny changes that I've just barely noticed for a while.
Anyway, here's the news we've all been waiting for: I have an appointment with the partner of the neurosurgeon. This new doc apparently has more experience with this part of the brain and also puts tumors on a fast-track, prioritizing brain surgery over spinal surgery. I guess this means that someone might be getting their spinal surgery re-scheduled, but I hope they can understand. I know (as evidenced in the previous posts) that I wouldn't be as able to wait for something as scary as spinal surgery. But the appointment is near the end of February and the surgery will likely take place in the week of the 27th. This may seem like a long time out. The first neurosurgeon assured me that I'm not in super-imminent danger, as opposed to (and this is my analogy) open chest cavity or something. According to the medical assistant, I am on the rush track: She'll mail me the paperwork I need to fill out and then I'm not supposed to mail it back, in order to save time. This all does seem something like a molasses race, especially since it's about 35º outside. But maybe my mind is racing a bit.
This gives me some structure to my near future though, which brings a bit of relief. Now I get a few things accomplished before the surgeries and all the risk associated with that. ;)
So, it seemed at one point that I might have to have my pacemaker replaced, adding another surgery to the process. Well, I talked with my cardiologist and his office said that the new kind of pacemaker does exist. However, it's not a easy as just swapping them out. Apparently the leads that go into the heart to create the artificial beat/rhythm correction heal to the heart muscle, and that removing those leads comes with a lot of risk - more than would be wise for proceeding with such task. But, he told me that there are some people at the university hospital in Portland that have developed a method of shielding the pacemaker and its leads in a way that makes an MRI possible.
My interpretation of this, is that it's one less surgery and the neurosurgery can therefore happen sooner. Which, of course brings up the $64,000 question: What did the neurosurgeon have to say today? That I would get a call tomorrow. When I talked with the medical assistant, I passed on the info about the pacemaker and asked that that info also be passed on to the doc. So, here's to tomorrow. Tomorrow. I love ya, tomorrow....
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.