GENERALLY IMPORTANT QUESTIONS
Nichole Davis asks: Now that you have a shared hatred of Bernard Pollard, how is your bromance with Brady proceeding?
The Patriots are playing the Broncos on Sunday for a Super Bowl berth. I'm here for Tom but I'm mostly staying out of the way. Haha. I just hope I get to meet him one day, though I'm not sure I'd have much to say or whether I'd bring up his involvement with my tumor ordeal.
David Gibson asks: What is a "Tom Brady"? And can I buy girl scout cookies from her?
The greatest NFL player of all time. Maybe he'll take his daughter out in the off-season to sell girl scout cookies? Keep an eye out.
MEMORIES/BRAIN FUNCTION POST-OP
Carol Wolfman asks: What was your first cognitive thought when you woke up from surgery?
The first and third surgeries had the same first cognitive thoughts: SOMEONE GIVE ME WATER NOW followed by "what time is it?" I was painfully dehydrated waking up from those surgeries. The second surgery wasn't planned so that one was more about figuring out where I was and why I was there.
Colin Dunlop asks: Are you sure this isn't a dream and you're actually still asleep?
Haha. No more sure than any other time I guess.
Debi Nall asks: Do you remember me?
Absolutely. As far as I can tell I have experienced no memory loss. That said, I have already embraced what I call "convenient memory loss" where I get to use the operations as excuses to forget things I already wanted to forget. "Oh, sorry honey, they must have taken that out with the tumor."
DURING THE OPERATION
Melissa Hoffman asks: Did you have any strange dreams during the surgery?
Nah. The strangest part of it is that the anesthesia sort of masks the normal passage of time we feel when we sleep normally. This is why I was asking about what time it was when I woke up... it feels like very little time has passed since I was last awake while in reality it has been several hours. But no dreams - I'm not one to remember my dreams most of the time regardless.
Cindy Hudson asks: Were you catherized?
Yes. All three surgeries and I did not enjoy this to say the least. At Kennestone they left the catheters in for longer than I really needed them in. At Duke they removed it very early, which was preferable, but then they require confirmation that you're returning to normal functionality in that area so I basically had a nurse there watching me attempt to pee for awhile. I felt bad for them but I'd still take this method over the painful way Kennestone removed it.
Patty Dickey asks: Did you have any desire to have the surgery video taped so you could watch it later?
None. Ignorance is bliss for me with most of this stuff. I've had a lot of people call me brave for how I've handled this but I would not use that word. If you think of it like a lower-level soldier at war it makese more sense. Ultimately I'm just showing up and following others' instructions (orders) but unlike the soldier I'm not really sacrificing anything in a noble sense, not putting my life on the line for cause or country. I just did what I was told, followed my instincts and tried not to inconvenience anyone too much. Devin wanted to see a video, though.
Jonathan Rogers asks: Did they use a polymer piece to patch you back up?
I don't think so, no. Dr. Friedman mentioned there was some titanium used but nothing which would cause me any grief in an MRI or airport screening, etc. They cut the skull bone and removed it, then put the bone back in and joined it back to the skull with titanium plates.
POST-OP ACTIVITIES
Cindy Hudson asks: Will you keep/do you still have the shunt? If so why?
Yes. The shunt is effectively permanent. The short term benefit, I assume, is that it would keep me normal if the tumor was to grow back, however unlikely. The long term is that it would be an entire additional operation to remove it and they tell me there's no added value to having another operation to remove something like this. In a perfect world I'd have it taken out but given the choice between leaving it in and having another operation, well, it's staying.
Nichole Davis asks: Does this limit you in any way?
So far it has mostly been gains: the removal of limitations I didn't know I had. Currently I have a few physical limitations as I cannot turn or lift my head in the ways I would like but this should pass and it probably won't be long. I was battling blurry vision pretty badly after the second surgery but by the third one it had mostly cleared up and the third surgery did nothing to make it worse. After dealing with that for a few weeks after the second surgery and waking from the third surgery with mostly good vision I'd go so far as to say this is one of the 2-3 things I'm happiest about with the third surgery.
Alan Miller asks: [During a recent recovery] To keep myself calm I sang Elvis Costello's "Brilliant Mistake" to myself in my head - any similar tips/tricks for shaking off the nerves?
The presence of my family and friends went a long way toward keeping me away from nervousness. When I was really alone I had a few repeat actions (Monty Python's "Always Look On The Bright Side" is one song which sticks out) but my thoughts rarely got dark. The Monty Python track is so perfect because it has a double meaning of "be optimistic!" being sung by a guy who is 100% going to die and literally has no bright side. Funniest scene ever.
The other one which ran through my head over and over (and makes me really emotional) was Arcade Fire's "The Suburbs," particularly the line at the 3:05 mark about wanting to have a daughter:
Nichole Davis asks: Do you feel like your doctors missed anything?
I have no reason to think this. I'm having an MRI in late February which will tell me a lot about what's still in there. These tumors can, theoretically, return, but mine has been called "slow growing" enough times to make me think that even the worst case scenario would be caught so far ahead of needing another operation that it's barely worth thinking about. If the tumor started to return I believe they'd treat it with radiation before it became truly problematic. The only bummer is that I probably have to have MRIs every few months for the rest of my life. The MRIs will gradually taper off, at least.
Noelle Stefina asks: When do you get to drive?
There's not a firm timeline but I would estimate that I should be able to drive within the next few weeks. If I can turn my head like normal and have no blurred vision then I can drive. They told me it would be six weeks before I would be back to normal. This may be true to get me to 100% but it's going to be a lot quicker to get me to 80% which is probably good enough to drive. I could probably even safely make a drive around the neighborhood right now but it would be illegal and unnecessary. Thankfully my wife has been up for driving me wherever I'd want to go.
POST-OP ACTIVITIES (con't)
Kelsey Lynn Meiring asks: When can you drink alcohol again?
About an hour or two before I start driving again. Just kidding, actually I am allowed to drink now but I'm erring on the side of caution with anything which unnecessarily taxes my body. I probably won't drink more than 1-2 beers here or there until I'm 100% (six weeks from now).
Jonathan Shaffer asks: Do you now experience phantom tumor syndrome?
In no physical way does it feel like something that was in my head is no longer there. My blog post from 1/13 (post-shunt-installation, pre-tumor-removal) still applies in full - there are many changes I've experienced but the installation of the shunt, I am now sure, created the feeling of what it would be like to have no tumor. Now that I don't have the tumor it feels mostly the same as it has since the second operation. Just really, really sore because of the 6" incision through the back of my head including cutting through muscles paramount to most head movement. And my head was already enormous so it's especially ill-equipt.
Antonio Santos asks: Do LP's still sound good at 33 1/3 rpm?
Absolutely. Unlikely the second surgery there are no changes to my tastes after the third surgery (tumor removal). But neither of them had any impact on my hearing or what sounds good to me.
Alison Crosby asks: Do you still want to collect things (records, baseballs, etc.)?
Yep! I've become slightly more organized with my collecting-type habits but for the most part they are unchanged. For example, I've reorganized my internet bookmarks to be grouped more logically. I was always pretty organized in this regard (internet bookmarks, record collection arrangement, etc) but there's still a noticeable 'improvement' in my organization. I wish I'd documented it before I started making the changes to be able to show what I've done because, looking back, this is kind of interesting. I've also been actively unsubscribing to various email lists I've been on for years but barely ever read. There's definitely been an uptick in my desire to have an efficient organizational system with my computer-related endeavors. This, too, changed after the 2nd surgery and has continued with the third.
Ronda Plemmons asks: When are you coming back to work?
Roughly late February or early March. I have to have an MRI in late February which could change this but based on what I currently know I'd be shocked if I wasn't back somewhere in the ballpark of March 7th. Probably the earliest return date would be February 22nd. The MRI isn't yet scheduled. My wife and I are also discussing the possibility of attending the 'holiday party' if I'm feeling up to it. They were kind enough to mail me the invitation.
Michelle Carnes asks: How big and where is your scar? Will there be a spot where your hair doesn't grow back?
I now have four scars: one in the front from my first surgery, one in the back near my right ear from my second surgery, one across my belly from my second surgery and one down the back of my neck from my third surgery. The incision from the most recent surgery is about 6 inches up and down the back of my head. Not sure if the hair will grow back yet. I've embraced my scars on the whole. Not that I think they're 'cool,' but more that I don't care whether there is an ever-present physical representations of this experience. I'm not going to worry about things I can't control.
WHAT BECAME OF THE TUMOR
Kimbell Hetzler asks: Is bkp being further researched? What I mean is, where is the tumor now? In a biohazard bag or in a lab?
Yes, the Duke folks are doing further analysis on it. I don't know whether I'll ever know what becomes of this but Dr. Friedman has published hundreds of papers on tumors and I wouldn't be surprised to someday find some sort of academic paper about Papillary Tumors of the Pineal Region which references mine. That said, they don't typically reference patients by name in these so I may never know. I'm confident the right people will get the right information from my experience and that's the main thing.
Melena Gasper asks: Did you get to keep it?
Nice as that sounds I have no use for it. Well, except that it might be fun to have around at Halloween.
Alison Crosby asks: How long do the doctors think you have had the tumor?
My Kennestone neurosurgeon implied that I have had it for a long time. If I consciously consider my current cognitive abilities and try to remember when I last felt the same way I can get a little bit closer, but nowhere near accurate. That is, I am now completely sure that I have had this for several years and I believe it's possible I've had it my entire life. I have internally identified a few different points in my life in which it might have first appeared or begun appearing but I'm afraid to put too much weight in to any of them without any hard evidence. There are other explanations, ie. "no, you idiot, you were just going through puberty" for many of the major change points of my life. I find I want to know this information more and more though. Oh well.
Caroline Lozen Bufalini asks: How big was the tumor?
Based on the pre-op scans (not any physical measurement of the removed tumor) it was the size of a quarter (assume a fully 3-D quarter like a small golf ball).
SUPERNATURAL
Nichole Davis asks: Have you developed any special powers or paranormal sensibilities?
Yes. I basically have the exact same powers as Superman minus the aversion to kryptonite.
Diane Kitterle asks: Are you now able to read minds & move objects without touching them?
Yes. It's awesome.
Kristin Stauffer asks: Are you now able to play the sax? Answer theoretical mathematical questions? Recall any date in history?
Yes.
VARIOUS CHANGES
Amanda Croy asks: You talked at your house about things (particularly beers) tasting a little different, and small changes in your perception. I'd like to hear more about what's changed after this surgery.
I'm not going to do any better describing the changes here than I did in my post from 1/13, but I can say that post-tumor-removal me is the same as post-shunt-installation me which is different from pre-shunt-installation me. One thing I didn't mention in the previous post is that I've generally been more pro-active with my various tasks and actions. I'll try to share the other changes as I understand them better. I've done some Googling to see others' interpretations but haven't found an article which really shows the same sorts of changes I've experienced. My friend Gregg told me about a local support group of brain surgery survivors who meet and discuss their experiences - perhaps this type of social discussion will help me better articulate it. I may join it. Stay tuned.
Shelden Shuman asks: I was interested in your mention of the passage of time in a previous blog. Could you expand on that?
I feel like time passes slower now that the tumor is gone. Perhaps it would be more accurate to say I had a false sense of how fast time passed when the tumor was still there and active. I've privately complained for years that there are not not enough hours in the day and that life felt like it moved by very fast. This hasn't completely changed (I still don't have enough time to do all of the different things I want to do) but I now feel like time is moving for me at the same or similar pace as it is for everyone else. I'd call it an improvement, not a drawback, from this experience.
VARIOUS (con't)
Cindy Hudson asks: Will you move back to Vidalia?
What? No, during the operation they only removed part of my brain, not the entire thing.
Paul Rehm asks: Now that you have answered all of these questions are you done with the Q&A thing?
No, not necessarily. Not everyone who reads this blog is connected to me on Facebook (where I asked people to send in questions) and there are no firm rules about this blog so I'll go with whatever. Just email me at pauljrehm@gmail.com or text me or whatever you want and if I get enough I'll do more in this format.
Thank you for reading!
