I am now exactly 90% done with my radiation treatments. The proverbial finish line is in sight. As far as I know everything has gone smoothly. My doctor (the radiation oncologist) tells me they'd probably eliminated 99.9% of the tumor in the first three weeks and that the final few weeks of treatment exist to kill the surrounding area as to prevent the tumor from returning. As those of you who are connected with me on Facebook have already seen he has provided me with the below letter authorizing my return to work in a few weeks. I do not mind the treatments themselves and Durham has been pretty great but more than ever I am very tired and eager to be done with this entire experience.
As I noted in a previous post I do not generally feel the radiation itself. My treatments consist of a daily visit to the Duke Cancer Center where they escort me back to a machine called a linear accelerator (check it out below). I lay down on a bed and they affix my custom mask as to keep my head from moving, effectively bolting me in to the bed. The radiation therapist who administers the treatment then leaves the room and I sit there for around 10 minutes while the machine beeps and buzzes. The radiation therapist then returns, removes my mask and I'm on my way. I've now had two separate hellacious three-hour MRIs since this process began so the 10-minute treatments feel like a breeze.
Despite the relative painlessness of the treatments there are a few side effects I've experienced. I've been feeling the fatigue my doctor warned me about. It's hard to complain though, as I get the sense from talking to other patients that my fatigue is less severe than the fatigue most of them endure. The scar on the back of my head which had felt painless for several weeks has become sensitive to the touch and is sometimes sore and/or itchy.
The nausea I mentioned in a previous post is occasionally present though they've prescribed me a steroid which has helped a lot except that it makes me want to eat more and all I want to do is lose some of the weight I've tacked on since this started (mainly recovering from the surgeries). The fatigue is the worst of the symptoms - it's strange to want to sleep nearly all the time and to go so long without energy or motivation to do many things. This is probably also why it has been awhile since I last posted to this blog. I'm also inclined to blame any and all unusual pains and sensations on the radiation however unrelated or coincidental they are.
Besides sleeping I have kept busy in Durham. Devin has been here most of the time and I am happy to report we have not yet murdered one another. I'll save the details of what I've done in Durham for another post as it might quadruple the size of this one, but for a quick summary: attended a Carolina Hurricanes hockey game, attended a Durham Bulls baseball game, wrote extensively in my vinyl record notebook, read(ing) a few books, walked/exercised daily, had a visit from my brother & his wife, had a visit from my parents, had a visit from 1-2 friends, inexplicably eclipsed 5,000 followers on my Instagram account, checked out a few local record stores and checked out a few local restaurants. For the past 3+ weeks we've been staying at a place which exists exclusively for cancer patients called The Caring House. It has been pretty great - the support community in the Durham area for people like myself is all around impressive.
Devin, meanwhile, has begun a really cool project hand making bracelets and similar beaded items with metal stamping in support of me/us through my health craziness. She set up an Etsy page to sell them which can be found by clicking here. As I mentioned on Facebook awhile back this is a great opportunity to receive something nice in return for your financial support. She has some new designs up on the Etsy page since we first announced it including some which could be good for Mother's Day, children, couples and grandparents so check that out. She can make personalized charms with dates, names or whatever you want and she doesn't charge much relative to the amount of effort it takes to make them. I like the ones which say #fubkp but there are several other options (and I'm biased). If you're not interested in jewelry and keychains and the like but want to help we still have the YouCaring page which can be found by clicking here.
As usual I am exhausted and fighting to keep the negativity which accompanies this feeling out of this post so I think I'll stop here for now. I finish the radiation treatment on Friday (!!!) and will post again after that, hopefully discussing my next steps before we can officially call this over. Thanks, as always, for reading.
Greetings from Durham, NC... aka Bull City... aka Title Town (my descriptor)... aka Rum Ham City (Devin's descriptor)... aka home, for now. We've been here since Sunday night (3/13) and I've completed my first three radiation treatments. Only 27 to go before I've achieved my destiny and have become Electro:
The weather was very stormy for the majority of our ride from Atlanta but we managed to avoid an incredible 130-car accident on our route. Click here if you want to learn more about this absurd incident or if you don't believe me and require proof. It was historic. The local news is still talking about it.
On Sunday night we checked in to a hotel for one night which set our six-weeks off on a, umm, an interesting note. Devin noticed the trashcan still had trash in it and I spotted a few stray hairs on the walls of the shower. Oh well, we thought, a lazy housekeeper but nothing we couldn't handle. We were packing up to leave the next morning when I discovered something interesting peeking out from under the skirt of the bed: a snakeskin raincoat. And it wasn't in a wrapper. Yes, seriously.
Upon checkout we politely suggested they pay extra attention to cleaning our room and explained why we felt compelled to make this suggestion. They volunteered a full refund which is why I'm not name-dropping the hotel chain. I assume the gent tent was used considering it was out of its wrapper on a hotel room floor but I didn't take the time to do a forensic analysis. I was also more concerned about the hole I'd left in the ceiling after having jumped 10+ feet in the air when I first discovered it.
The fear subsided when we checked in to the Extended Stay hotel from which I'm writing this as the clerk revealed our friends Justin and Tyler had somehow discovered where we were staying and had fully paid for our two weeks here (Thanks again, gentlemen!). There's a good chance I will develop carpal tunnel from writing "thank you" notes over the next few weeks in response to all of the thoughtful gestures we have received. Glass half full: I'd much rather keep a blog chronicling my struggles with carpal tunnel than a brain tumor. Once we got in the room I received a phone call stating we'd been approved for a grant covering part of our hotel stay at the place we're going for the final four weeks of our time in Durham. The grant is great on its own, but I'm more excited to finally have something in writing which proves I'm poor enough to qualify for a financial aid grant.
Our good fortune with financial matters did not last long. On the way back from my second treatment the serpentine belt on my car broke which lead to overheating, a loss of power steering and a loss of output from my alternator. With help from my dad (via phone) we were quickly able to identify the source of the problems and then find a mechanic who had it repaired by the end of the day. It was a setback of a few hundred bucks but I was more relieved that we were never stranded on a major road and that we were able to nurse it to a mechanic with relative ease. I don't have anything witty to say about this experience so here's a link to my 14th annual college basketball Tournament Challenge bracket group for those who are reading this before Thursday 3/17 at Noon and want to participate. Enter "gthc" when prompted for a password. It's free to enter and you can submit up to 5 different brackets but there are no prizes for winning unless you count the lifelong joy which comes from beating me at this. This is a joy felt by literally everyone who enters so, you know, cherish it. Contrary to popular belief I will not be picking Duke to win it all this year. Next year, though, next year I'm definitely picking them.
The radiation treatments themselves have been quick and painless. On the first day I didn't even know I had received my treatment until the Radiation Therapist who administered it told me after the fact. The Radiation Therapy team at Duke Medical has been really great. The closest thing I've had to a side effect so far was mild nausea after one of the treatments but even this might have been coincidental. I have no idea what kind of impact it has had on BKP so far but I'll be seeing my doctor every Friday and I suspect he will know. Regardless, I should have ample time to amass a list of questions each week so I can bombard him with important things like "where am I?" and "why is my head still enormous?" and "where am I now?"
In closing, if you're still not sure what I meant by "snakeskin raincoat" or "gent tent" then, uhh, let me Google that for you.
Ugh. Again my optimism has been dashed by a hard reality. I thought I would be writing today to say that I was returning to work, returning to normalcy and that I was done visiting Duke on a non-basketball basis. Unfortunately I am not able to say this and it no longer feels close. It was more like Groundhog Day and the rodent apparently saw its shadow.
In retrospect there were signs... Superneurosurgeon scheduled an appointment for me to meet with a neuro-oncologist before he ever saw the results of the MRI we were to review on my latest visit. The MRI showed plenty of leftover tumor - enough to make the Duke folks discuss the possibility of another operation and chemotherapy. Fortunately these possibilities were eliminated (for now). It's easy to see in the below MRI that Superneurosurgeon got all of the tumor above the cavity in my brain where the rest of it now sits.
The leftover tumor happens to be directly on the brain stem so the risk would be very high even if Superneurosurgeon were able to reach the cavity. So this leaves radiation - a possibility I knew of ahead of my recent doctors visits and one which didn't necessarily scare me. I do not currently fear the radiation treatment itself but my new radiologist (who happens to be Duke Medicine's Clinical Director of Radiation Oncology so... Superradiologist?) insists I must receive the treatment under his supervision at Duke and with Duke's $10million radiation machine which can perform MRIs while the radiation is being administered. It's a daily treatment 5 days per week for 6+ weeks. This news hit me hard. I did not want this.
For the past few days (with a short interruption last weekend to visit Statesboro to celebrate my brother's 30th birthday... Happy Birthday, Kyle!) we have been preparing to move to Durham where we will live for at least six weeks. To help soften the blow of this news I've been reminding myself that Durham is a mostly cool place in which I'll have 23 hours per day to spend however I want. Sure, it might cost us a fortune to be in a hotel and live away from home... and I'll be getting my head zapped over and over... but I'll have my wife in town with me for most of my time there and I'm happy about that. Plus I'm hoping by the time it's all over I'll develop some sort of super power under the logic that Peter Parker was bit by a radioactive spider and I will be bit by what I assume is a radioactive laser.
One of the few perks of having to get radiation over a relatively long period is that I get to wear the above pictured custom-fitted mask to keep me from moving during my treatments. I was fitted for it before leaving Duke and it's made of hard plastic. I was kind of disappointed during the mask/helmet fitting as I expected my enormous head to be too large for their warm plastic mold. Alas, it didn't even warrant a comment from the nurses. My excitement for this mask is not because it is comfortable and fashionable (it's neither comfortable nor fashionable) but because I get to keep it after my treatment is finished and therefore I get to use it to scare my dog and cat.
We leave for Durham on Sunday, 3/13 and intend to be back in Marietta for Easter weekend. After that I am not sure when I will be back but the six week treatment period ends on 4/22 and I'm strongly hoping no extension is required. One of the most common side effects of such radiation is significant fatigue so it's difficult to say what I will be able to do and when I will be able to return to normalcy. I have a follow up appointment with my Duke neuro-oncologist in early May and I'm guessing I'll be out of commission until then (at least).
We've arranged a top notch house/pet sitter (thanks Carol!) so thankfully we will not have to worry about these things. We will be staying in an Extended Stay hotel for the first two weeks and have another place booked for the rest of our time which we may end up switching if a more spacious, less costly opportunity arises. Please pray for me because, in addition to everything I've just mentioned, I will be cooped up in a small room with Devin for six weeks. And please pray twice as much for Devin for the same reason.
It has now been over a month since I last wrote in this space. I have not been especially motivated to write as there has not been much to talk about on the tumor front and I have a hard time subjecting folks to my ramblings when there are no major changes or interesting developments. Fortunately we are now nearing a big day in the BKP saga and motivation has returned.
Last Monday (2/22) I had an MRI which, once reviewed by the proper authorities, will tell us how my recovery is going and what's next for me. On Monday 2/29 Devin and I are driving back up to Duke and I have an appointment scheduled with Superneurosurgeon on Tuesday 3/1. I don't know exactly what this appointment will cover but I know we're going to review the aforementioned MRI with Superneurosurgeon and I suspect the results of this will be crucial. Ideally the MRI will show no remaining tumor and I will be able to go back to work and resume normal life. If there was some remaining tumor from the operation or some growth since the operation it's possible that I could require radiation. I'm sure there are other potential outcomes, too. Regardless, I know I will need MRIs every so often for the next several years so I do not expect the doctor to pronounce BKP dead, nor will I need him to do this to consider the visit a success. The best case scenario, as far as I know right now, is that the tumor is mostly gone and I do not require any radiation. I'm also hoping the doctor gives me the go-ahead to return to work and resume all regular activities. If he does I expect to be back on Monday 3/7. I've already resumed driving relatively short distances and this has gone fine. In fact, I feel mostly normal except my vision is still sometimes blurry. The blurred vision was actually a big risk of the tumor resection surgery (the surgery at Duke) but I came out of it with my vision the same as before the surgery. It's usually manageable - more of an annoyance than an impediment - but some days it really wears on me. I'm hoping the doctor can provide some guidance on dealing with this or fixing it. To this point the only advice I've gotten has been to avoid any unnecessary stress so I've responded by not opening my medical bills. The worst case scenario, as far as I know right now, is that the doctor took off his watch during the surgery, left the watch in my head and really wants it back.
Anyways, generally speaking I've been doing well. I just want to get past the blurry vision and get back to work. I feel like I'm slightly more recovered every day and by my own measure I'm probably nearly done with recovery. Devin and I went for a hike last weekend with some friends which was more of a challenge than I anticipated but proved valuable in helping me begin to get back in to shape after a few months on the couch. It seems like I have been sleeping a ton lately: 9-10 hours each night, sometimes even more. I don't mind this because I'm trying to let my body tell me what it needs and just rest as much as I can. It's possible that the tumor coming out of the pineal region of my brain has something to do with this because the pineal gland regulates sleep but for the most part my sleep patterns have been the same, just longer. The scar from my latest surgery is the most significant of the three and is healing nicely. It looks healthy, but more importantly it looks bad ass.
I'll wrap this up for now and I'll have another blog post after my meeting with Superneurosurgeon next week but I just want to reiterate how grateful I am for everyone for the support of all shapes and sizes over the past few months. Virtually everyone has been awesome to me since all of this started and I feel you should know this whole experience has strengthened my opinion of human decency/humanity. On the YouCaring site I mentioned in this blog in the January 13th post (https://www.youcaring.com/paul-rehm-502641) I'm already nearly at 50% of my goal. When I add in the checks people have sent outside of YouCaring it's even closer. I'm going to attempt to respond to each of you personally but for now I just want to thank everyone for the gifts of food, activities, money, support/backup at work, support of Devin and literally hundreds of other things.
Many of you have heard me say this and I'll probably end up saying it several more times but since I haven't yet put it in writing: if and when I get though this ordeal with a clean bill of health I will only be able to look back at all of this as a positive experience which bought me closer to my friends and family. I am sincerely so, so grateful.
A few days ago I posted on Facebook asking for folks to send in questions about my experience which I could answer on the blog. The following is based on what I received. I've made a (very loose) effort to group similar questions 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:
POST-OP ACTIVITIES (con't) 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!
I have never been so sore (it hurts to even hold my head up) so I will keep this brief but I wanted to share in case anyone hasn't heard: I am tumor-free! So long, Bernard K. Pollard!
I have so much to write about and I'm actually really looking forward to sharing the details of what's going on but it hurts a lot just to type this and I'll have another six weeks to talk about it so be patient.
Just know that everything (except aforementioned pain/soreness) is good right now... The operation was a huge success and I'm close to being done with this entire ordeal.
One thing which I've come to learn is that I am very lucky. My tumor, despite being relatively low-grade, was so rare that it warranted the services of Superneurosurgeon Dr. Friedman, perhaps the best neurosurgeon alive. I actually could have had a "worse" tumor and still, by extension, a worse team of medical professionals.
I'll have a new post in a few days with more robust thoughts and news and details. I continue to be overwhelmed by the support and love and generosity and will go in to more details on that as well. Thanks, all!
What a weird few weeks this has been. To wit, I nearly died since I last wrote a blog post. Apologies in advance for the length of this one but it has been almost a month and I have a lot to go through...
It's hard to comprehend. I still don't fully understand it. On Saturday 12/19 I saw Star Wars: The Force Awakens. On Monday 12/21 I woke up in the recovery room of Kennestone Hospital remembering almost nothing between the start of the movie and this moment. I could not even give a reasonable plot synopsis of the movie so we went back and watched it again a week later in what I would call the strangest movie viewing of my life. It felt like I was watching something I had seen 20 years earlier. I didn't know what plot developments were about to unfold but once they did they all felt so familiar.
So I woke up Monday afternoon in the recovery room at Kennestone after an emergency surgery to put in a permanent shunt from my brain to my abdomen - the same shunt I was excited to avoid with the success of the previous surgery. I vaguely recall being ill on Sunday, I vaguely recall preparing to watch some NFL games. Devin said that my preference to continue sleeping over watching Tom Brady and the Patriots that day was the biggest cause for concern (haha). There is no doubt to me, now, that she saved my life by acting on this feeling and taking me to the E.R.
At Kennestone they saw what we now know: a cyst had grown on my tumor to block the puncture created during the first surgery and to block my brain fluid from circulating. I entered surgery early Monday morning and I was back in commission, more or less, by Monday night. Absolutely wild to think about now. The hydrocephalus caused the pressure in my brain to reach nearly fatal levels and I'm still not back to my original state - my eyesight being somewhat blurry and my brain still not operating in the way it usually would.
My regular neurosurgeon performed the emergency surgery. On my follow up visit recently he told me I was nearly in a coma state. In the mean time I've been to Duke to meet with Superneurosurgeon who scheduled me for surgery on Friday 1/15 to have Bernard K. Pollard removed. I am typing this long-overdue blog post from the car as we drive back to Durham for this operation. Here's video of the real Bernard Pollard committing the offense which is the basis for the fact that I've named my brain tumor after him:
The past few weeks have been really strange for me. Nothing at all like the recovery from my first surgery, really. It has taken me a really long time to process everything that has happened but I think I'm beginning to understand it. My not-necessarily-medically-sound theory is that I should be thinking of my tumor as an illness and that the first surgery, however more substantial than the second surgery, did not offer anything in the way of curing this illness. The second surgery, specifically the shunt installation, has created a makeshift cure for it... or at least the appearance of it. Sort of like allowing my body to act as though there is no tumor. So my theory is that the past few weeks have been really strange for me because I'm actually getting better.
The differences between pre-shunt and post-shunt me have been difficult for me to explain to others but I will attempt to use this space to list the parts I can articulate. More than any other part of this post this section is for me to document for posterity for myself:
I see others' perspectives better in general.
I have been more duty-oriented. I don't procrastinate as much as I used to. This is probably also tied to having so much more time to do things so I don't know how much weight to put in to it.
Some foods taste different - the ones which have stood out the most have been coffee and beer with their subtle nuances. I still like all of the same foods, it's just that they don't taste the same.
My sense of humor is slightly different. Much like with the food I'm still mostly in to the same things but the way it processes is a bit different. I notice it most when browsing a few humorous web sites I've followed since before I knew of BKP's existence.
Time passes a bit slower. I don't know how to articulate this but it just generally feels like days have more hours in them or something.
With all of these I feel as though the "new" ways in which I'm experience them is normal, ie. the way all of you have been experiencing them all along and that the previous ways in which I was experiencing them was a byproduct of having a quarter-sized growth between my ears which isn't supposed to be there. The only drawback which comes to mind at this time is that I've had a bit less creative fire in my belly. This is evidenced by the fact that I'm writing my first blog post in nearly a month after writing like two per week through most of this process. But there are other explanations for this, too, so maybe I'm overthinking it.
Superneurosurgeon is seriously one of the most impressive people I've ever met in any walk of life and his confidence and demeanor is most comforting. I was completely content with my regular neurosurgeon but Superneurosurgeon is effectively a rock star. I've been withholding the names of my doctors in this space to this point but if you'd like to see for yourself his name is Dr. Allan Friedman. He actually operated on Ted Kennedy's brain tumor, for instance. Despite the extreme rarity of my tumor he has operated on at least four of them with all patients returning to good health. He said they completely removed the tumor in three of the four operations and required a bit of radiation in the fourth.
The operation will be early Friday morning and should take 3-6 hours. If everything goes smoothly I will be released from the hospital within a matter of days. He anticipates a six-week recovery period so I'm hoping/planning to be back at work by March. After my first operation I felt so normal so quickly that I never thought it would actually take six weeks before I'd be back (I thought I'd be back by now) but with this being a more invasive/significant operation (it's officially called a Crainiotomy, for those curious) and with what I've experienced since my 2nd operation I'm inclined to trust the doctor's estimate. After the amount of time I have spent with our dog and cat this past month I suspect they'll be very upset when I finally get back to work. Or at least the dog will be.
I have been wanting to share all of this information for quite awhile now but as I mentioned it has taken me a lot longer to understand what was happening to me and to find ways to explain it. The past month has mostly been quite good to me, obvious health issues aside. My family quickly changed their Christmas plans to come to Marietta so we could spend Christmas together and this, as usual, was a blast. Going to Duke the first time was fun with some of my oldest and dearest friends chipping in to buy Devin and I tickets to see the Duke basketball team play. There has been a steady stream of visitors - usually with meals - which has been awesome. My oldest friend Nichole from Boston had a visit to see us scheduled since before we knew of BKP's existence and this visit was also incredible. We even hosted a small gathering with Nichole and other very close friends to open a bottle of Samuel Adams Utopias beer I bought on the day I proposed to Devin in Boston.
Devin, in usual fashion, has gone above and beyond in her support of me throughout this process and I am continually amazed by how lucky I have been to have her running the show.
Several of you have asked and are still asking how you can help. I have never been comfortable with charity but my mom set up this account on the site YouCaring to help pay the medical bills which are beginning to show up (we're still not sure how much I'll have to pay but the Duke Medical Center actually called me today to request a $5,900 surgery pre-payment) so if you are in the position to give then please click here: https://www.youcaring.com/paul-rehm-502641 and follow the instructions.
At the time of this posting the YouCaring page is very new so I do not know exactly how it works but it seems to be similar to GoFundMe except more geared toward situations like my own. There should be instructions to make it easy on your end and supposedly a very high percentage of the amount donated goes straight to the account Devin and I use for medical bills. Of course there's always PayPal, too, which has no fees if done as "friends and family." Should you feel so inclined to use PayPal please use Devin's email of drehm8@gmail.com for this.
Regardless, thank you all so much for the continuing support - as I said in a Facebook post a few weeks ago the words and gestures have meant more than I could possibly explain in this space. I've cried very little over the tumor but have been moved to tears by kind and generous gestures what seems like 20+ times now. I am so thankful.
