Only tumor weeks til Christmas

At last I finally met with my neurosurgeon to discuss the pathology from the biopsy. He explained that my tumor is a Papillary tumor of the Pineal region of the brain. These are extremely rare and per this Wikipedia page they make up less than 1% of all brain tumors. My wife says I am a "special unicorn." Yay.

As of 2011 there had only been 57 documented cases of these tumors worldwide. They do, however, have their own Wikipedia page so hey that's something.

The neurosurgeon went on to explain that tumor severity is graded on a scale of 1 to 4 with 4 being the most severe/bad. He said the biological behavior of the Papillary tumor is variable and could not be definitively graded on this scale except to say they believe mine is either a 1 or a 2. A 1 is benign and a 2 is potentially malignant. See this page for more information on the histological grading scale. Because it's not (yet) a 3 or a 4 (which are malignant) we're calling this a victory in the war on BKP.

Despite this victory the war is ongoing. My tumor did not show "significant mitotic activity" which he said was good. According to the aforementioned Wikipedia page these tumors most commonly occur in people aged 31.5 years (average) which is incredible because my biopsy actually occurred exactly 5 days before I became 31.5. The Wikipedia page lists the Papillary tumor as grade 2 or 3 - not sure why the discrepancy. Even though Wikipedia has never, ever been wrong I'll take my neurosurgeon's word for now. So, what's next?

My neurosurgeon has recommended I consult with a doctor with more experience on the matter. He's provided a referral to a neurosurgeon at the Duke University Medical Center in Durham, NC. The new neurosurgeon will assess whether another surgery (tumor resection) or a wait-and-see method (MRI every few months) would be best. My neurosurgeon has been incredible and if this guy at Duke is better then I may have to refer to him as "superneurosurgeon." This has the added benefit of helping me differentiate the two for this blog. Current neurosurgeon said, somewhat unofficially, that he would be comfortable with waiting a few months and seeing how the tumor grew (if it grew at all) but ultimately deferred to Superneurosurgeon's opinion. So... like nearly every great college basketball player from the past 30 years I'm going to Duke.

Now I wait for Superneurosurgeon's office to call me to set up the appointment. I'm hopeful they can see me before the end of December. My beloved Blue Devils have four home games between 12/15 and 12/30 and another three between 1/9 and 1/18 so maybe, if we come in to a large sum of money for tickets between now and then, we can turn this trip in to something fun. This may go without saying but I'm definitely hoping the new doctor recommends the wait-and-see approach. I might be over-optimistic but my hunch is that the wait-and-see is what will happen. With some luck the MRI (which would take place roughly in February) will show little or no growth which, coupled with the biopsy results, would indicate the tumor is benign. Should I need more surgery it will occur at Duke. Anyone have a place to stay in the Durham area?

All in all I am very happy. We're not quite popping the champagne and obviously nothing will match hearing "your tumor is benign" with all of this stuff ending in good health but it's hard to think of today's news as anything other than positive. It's groundhogs day with at least a few more weeks of relative uncertainty but it feels great having the worst possible outcomes crossed off. They even took my stitches out so now the only ways in which I scare small children are:

• My mohawk
• My teeth
• Forcing them to speak in public
• My gait
• My odor
• Asking them to pull my finger
• My general enormity
• My clown mask

So, like, basically nothing!

We interrupt this broadcast to bring you a special news bulletin...

No news on the tumor front so I'd like to use this space to show some appreciation for the following people: my wife, my BFF, my roommate, my financial planner, my maid, my accomplice, my nurse and my boss lady. These are all Devin Rehm and today is her birthday.

My love and respect grows for her with each passing year. I am truly blessed to have her in my life. The various ups and downs that we have faced together in the life have further strengthened our bond, love and respect for each other.

As many of you know, Devin suffered from autoimmune hemolitic anemia in the fall of 2012. She was in the hospital for a few weeks and very nearly died. From this, from her, I learned everything I know about handling my current medical issues.

One of the common refrains since The War on BKP started has been "wow, you two have been through a lot." I don't think of it that way, I simply think we've been lucky that these tough times have been spent together.

(Photo, however unflattering, has been shared with Devin's permission. Also, I can't look at it without getting emotional. Thanks to Carol for sending it to us in October. We didn't know it existed for three years.)
I'll refrain from embarrassing her by going in to details, but I can say with full sincerity and without being trite that I could not have made it through my surgery or the surrounding events without her experience and support.

Devin, I love you. Happy birthday.

No news is good news?

No biopsy results yet.
Analysis is done by committee at the Mayo Clinic. Per a pathologist friend-of-a-friend the type of tumor is so rare that it likely takes a lot longer to analyze. I don't have an ETA, could be any time.

Anyways, I'm nervous, sure, but I'm also LIMITED EDITION...

I will make a post again here once we know, of course.
The Kennestone staff had to shave back a big chunk of my hair to perform my previous surgery so as you've probably seen on Facebook by now I decided to keep the lemons life gave me because, hey, free lemons. Here's the new mohawk haircut I am sporting complete with Harry Potter-esque scar.

One of the things I forgot to mention in my previous post was that the next surgery, if there is a next surgery, might have to be performed at Duke University in Durham, NC. Duke basketball is about equal to Patriots football in my heart (both only slightly behind Red Sox baseball) so while I definitely don't want to have another surgery there might be a silver lining of getting to be in town during the currently-in-progress season. Here's our friend Roy, wifewoman Devin and I celebrating Duke winning the National Championship in April:

The below picture shows my brother and I with Duke legend Shane Battier in the fall of 2002. My brother is a bigger Duke fan than I am, big enough of a fan to jab sharpened pencils in to my ears as an excuse to go to Durham, so I'm watching him closely.

In other news, we saw the bill for my surgery, pre-insurance and it was over $100,000. Six figures. Seriously. I don't yet know how much our part will be but unless it's "actually, Mr. Rehm, we're paying you for coming in" then I it will be out of my budget. I'm not stressing about this (yet), just sharing it because it's interesting.

Anyways, thank you all for the continued well-wishes, food, thoughts, prayers, swears, etc. I am nervous but I am feeling physically fine and I will not let the nervousness overwhelm me. We continue to look ahead, not backward.
“That the birds of worry and care fly over your head, this you cannot change, but that they build nests in your hair, this you can prevent.”

Tales from the Irish Chess Union

Greetings from the Neuro ICU on Saturday afternoon 11/21. My nurse was just doing her rounds and I saw she had a rectal thermometer tucked behind her ear. I pointed this out to her and she says "uh oh, some a-hole must have my pen."

So I'm here which is where I have been since Wednesday night. Surgery was Wednesday morning and it was generally considered a success.
The extreme barber neurosurgeon said he was successful making the tunnel for the brain fluid to start flowing again (it's called a third ventriculostomy). The tumor itself cannot be diagnosed until pathology comes back from the Mayo Clinic (should be in by Wednesday, likely sooner), but they did say it had a large blood supply so they could not get too much out. So I am recovering in the Neuro ICU until stable (I've never been 'stable' so I don't know how they'll be able to tell). I was hoping they'd be able to take more out so the inclusion of this would make more sense:

If the tumor were not benign there was a specific type (Germinoma) we were hoping it would be as this could be treated with radiation but this possibility has been eliminated. So I'm still looking at the same two major possibilities: benign (no further surgery) or malignant (he's probably going back in, staying awhile and they're eventually naming a new branch of the hospital after me).
So we're still praying for benign... for obvious reasons but also because I'm ready to be done with all of this stuff. The ICU is OK but the recovery room was a pretty rough 4.5 hour experience.
The gentleman in the bed next to me provided some entertainment in my stupor. He was recovering from some sort of belly surgery and was very large and very medicated. He believed himself to be in great pain and went so far as to rip out his IV, attempt to roll off of his bed and answer "hell" when asked "sir, do you know where you are right now?"

As for me, the doctor came in and said "Mr. Rehm, I have bad news and worse news." I'm like "Whats the worse news?" He says "Your tumor is relatively large, very aggressive and there are limited treatment options..." I hang my head for a couple moments, look up and ask, "And the bad news?" He tells  me "You have Alzheimers." So I say "Well, at least I don't have a brain tumor."

So I've had some strange television viewing marathons. First it was "American Pickers" then "Family Feud" and Ghostbusters -> Ghostbusters II -> The Karate Kid.
"American Pickers" is great because they always seem to find classic motorcycles and now I want one because I have a brain tumor and I have been brain washed by the show and because #YOLO.
When I finished high school I wanted to take all my graduation money and buy myself a motorcycle. My mom said no. She had a brother who died in a horrible motorcycle accident when he was 18. And I could just have his motorcycle.

(Motorcycle joke stolen from Anthony Jeselnik - seen in this photo/GIF, also calm down I don't really have Alzheimers)
I think I will get discharged on Sunday. I'm up and walking around but I'm plugged in to several machines so it's not easy to do much. I'm basically a zombie.

I've been reading a lot of stuff online. This article helped. And an internet rabbit hole of neuroscience digging lead me to this which is relevant to my interests.
I also have several magazines but haven't been able to focus enough to put a dent in them. I blame Steve Harvey... and Egon Spengler.
For the most part, though, I am feeling fine. No headaches, no major physical complaints. I'm definitely not bored but also not doing anything productive or especially fun... mostly (and ironically) just mindless.

Here's a photo of the damage. Since this was taken they pulled out the tubes shown. It actually went around 6 inches in to my head. Get ready for some gross imagery and descriptions...

There's the post-removal tube (light brown). Freaking weird and freaking gross. Sorry. The point at which the black cable in the background crosses the light brown is roughly how much went in. The most painful part of removal was the yanking of my hair and the stitching. Also feeling brain fluid come out and leak down my back was not the highlight of my visit.
It's difficult to have visitors to the neuro ICU but I'm very grateful to those I've had... Devin has been with me non-stop throughout and has been my top nurse.
My current nurse, Debi, is a Patriots fan, so the crown is not safe... but then again, Devin has not yet stabbed me in the stomach with a needle. "Nothing to worry about,'' Debi said, noticing the concerned look on my face, "just a little prick with a needle." "Yes, I know you are," I said, "But what are you gonna do with it?"
Visitors so far have included mom, dad, brother, sister-in-law, mother-in-law, aunts all the way from New York and Florida, our wedding sponsor couple from church, our friend/realtor from Roswell, a bridesmaid and her fiance from South Carolina, a groomsman and his wife from Kennesaw and even a Brady-hater (and admirer of the original Bernard Pollard) came by, in town from Illinois...

Very greatly welcomed distractions, but right now I just want to go home and I want to watch the NASCAR race tomorrow with my family and the Patriots game on Monday night with my wife and I want Bernard Karmell Pollard to be benign so I don't have to have another operation and I want to be able to go to sleep without wondering whether I'll wake up.

I'll wrap this up with a quote from The Shawshank Redemption:
"I find I'm so excited, I can barely sit still or hold a thought in my head. I think it's the excitement only a free man can feel, a free man at the start of a long journey whose conclusion is uncertain. I hope I can make it across the border. I hope to see my friend and shake his hand. I hope the Pacific is as blue as it has been in my dreams. I hope."

And in the end the love you take is equal to the love you make.

This video just about sums it up.

Surgery Wednesday morning. Let's do this.
No matter what happens you'll have to admit I was open minded.
Get it?
Love and infinite gratitude to everyone reading this.

I was so much older then, I'm younger than that now

It's Friday 11/13/15 and I have now met Lawrence the neurosurgeon who will be striking out on a daring camel journey across the harsh Arabian desert performing my brain surgery. For the first time I feel like I mostly understand what is going on. In turn I now understand that we did not previously understand what we were being told. The most significant of these errors is that we thought it had been determined with finality that the tumor was benign and not cancerous.

A few of you were intelligent enough to ask why I would need a biopsy if it was benign (Hi Aunt Judy!) and I probably would've asked the same but each of my visits with the neurosurgeons have been a blur. The neurosurgeons themselves have been very helpful and comprehensive and I've had an amazing support team taking notes (among other things) but when one receive news of this nature it can be very difficult to hear or process the information that follows.

So here's what we now know:

• Bruce Willis was a ghost the whole time.
• The blood test results I referred to in my previous post showed that the cancer markers came back normal which usually mean the tumor is not malignant. So it was still good news.
• I have surgery tentatively scheduled for the morning of Wednesday, November 18th (assuming full availability of necessary equipment).
• The surgery will be 'minimally invasive,' entering from a small incision on the front right quarter of the basketball on my neck.
• Jet fuel can't melt steel beams.
• The primary function of the surgery will be the biopsy, however the neurosurgeon will have the flexibility to evaluate it on the fly and, if he determine's it's safe, perform the debulking all in one shot. This would be ideal and is mostly based on whether or not there is brain swelling.
• Regardless, the biopsy will determine what type of tumor this is and how it will need to be treated. Again, none of the previous tumor types or treatment possibilities have been eliminated after all.
• The tumor is located in the tectum/tectal plate/pineal region of the brain. The name for what I have is Pineoblastoma. Here, I'll save you the trouble.
• My receiving a permanent shunt is not an inevitability after all (yay!). If it can be done safely my neurosurgeon may attempt to carve out a passage which would re-route the fluid being blocked by the tumor. My neurosurgeon estimated there was a 75% chance this would work out (double yay!).
• My upcoming surgery has only a 2% chance of stroke/bleeding/infection/brain injury/etc. I can definitely live with 2%, Does a body good. (Sorry, I have no self control).
• I'll have up to 5 days in the hospital and I'll be out of work for roughly two months. Fortunately there will be some crossover with the holidays.
• One of these men is the next President of the United States. The other is Donald Trump.

Frequently Asked Questions:

• Why is this blog called "Fatlanta?"
• I registered the name in like 2008 because it was amusing to me. When preparing my initial post I wanted to use Blogger aka Blogspot because it allows me to write in long form and insert pictures throughout and one does not need to be my Facebook friend to read it. I logged in to Blogger/Blogspot to prepare it and couldn't think of a title for the blog. I saw my abandoned blogs from years past including this. I had never posted on "fatlanta" and went with it... sorry, no special meaning. But it's still amusing to me.
• Is it FAT-lanta or F-Atlanta?
• This question made me laugh.
• Do they know what caused your tumor?
• No. They probably won't and there may not actually be a specific cause. This does not bother me - it won't change anything and I won't have to spend the rest of my life regretting something stupid I did. It would be nice for me to be able to tell people "hey don't do (this thing) or else you'll get a brain tumor like I did" but otherwise I'm apathetic.
• How are you feeling?
• I'm mostly feeling fine. The steroids (or something) have done a lot to stop the symptoms I've been dealing with for the past few months so in a way I'm feeling a lot better than usual. Just light-headed and shaky. 
• What is your quest?
• I seek the grail.
• What is the airspeed velocity of an unladen swallow?
• What do you mean, African or European swallow?
• What is the long term prognosis? What are the long term effects?
• This is completely tied to what they find in the biopsy. I cannot begin to go through all of the different possibilities.
• As your wife I demand you include the story about the priest in your next blog post. This is not a question, just find a way to do it or else I'm not driving you back to Barnes and Noble or Dunkin Donuts.
• Oh. OK then. A testament to the power of the internet and the ways in which news spreads... last night wife, mom, mother-in-law, mom's bestie and I attended a Healing Mass at the church. The Priest who married us is performing the service. He's neither our Facebook friend nor the Facebook friend of anyone we know and for all I know our presence at the Mass is the moment he's learning of my battle with BKP. He is anointing us with oil on the altar, it's very emotional, very solemn, he pulls us in close and whispers "please, no sax in church." Absolutely hilarious.
• I am not your Facebook friend. How will I know when you've made a new post about sacking Bernard Karmell Pollard?
• You can add me on Facebook... just click here.
• No, I meant I literally don't have a Facebook.
• I lack the self-importance required to create a mailing list but I'm open to ideas. In the meantime, just check in at fatlanta.blogspot.com or send me an email: pauljrehm@gmail.com
• You'll be out of work for two months and rarely able to leave the house. What will you do with your time?
• I have an awful habit of buying books which look interesting to me despite not having read dozens of books I already own. So hopefully I'll catch up on those and hang out with my dog while avoiding her devious attempts to kill me. As Groucho Marx said, outside of a dog a book is a man's best friend. Inside of a dog it's way too dark to read.
• Wait, your dog is plotting to kill you? Are you aware your tumor bears a strong resemblance to your dog?
• Holy. Shit.
  
  

What I Did On My Summer Vacation, Paul Rehm, Age 9

It's Tuesday 11/10/15 and it has been a looooooong week awaiting test results. There are only so many things one can do to shift their attention away from the possibility of their brain losing its training wheels and setting off on its own...

A few things I've tried include:

• Re-organize my closet. Alphabetically. By athlete.
• Discreetly place some bubble wrap around the rims of our toilet bowls and then gently lower the toilet seats.
• Read magazines.
• Re-watch the original Star Wars trilogy.
• Read magazines about the original Star Wars trilogy.

It's all running together...

Anyways, I'm recently back from a much-anticipated visit to my neurosurgeon and here's what we know...

The good news: It's not malignant. It's not cancerous. I'm probably not going to need my head opened all the way up.

The bad news: Bernard Karmell Pollard is large and in charge and he's going to continue to bother me for a long, long time. (Click here for context of my tumor's name).

WHAT'S NEXT? I'm seeing to a new doctor on Thursday, one with more experience with these rarer forms of tumors and surgeries. This doctor will make the final decision on my surgical procedure and will perform it at a later time. We know it will include at least a biopsy and a permanent shunt. Depending on my brain's reaction to surgery these could be two separate procedures but hopefully just one. The shunt will will provide a passage for the currently-blocked brain fluid. The biopsy will provide more analysis on the tumor. If I remember correctly it will involve a small incision in my head to put an endoscopic probe and then they'll scoop out and devour my brains.

Here's a diagram of what they expect to see:

A: Portion of brain devoted to wife, pets, friends, family, etc.
B: Portion of brain kept available for Tom Brady in case he ever asks for it, however unlikely.
C: Very strong evidence I should have studied more in college.
D: Bernard Karmell Pollard (my actual tumor).
E: Boogers. Lots of them.
F: Portion of brain containing volumes of musical, cinematic and sports statistics, facts and records except only the ones they don't ask about in paid trivia competitions because I WON'T BE A PAWN IN YOUR LITTLE GAME TRIVIA FASCISTS!!

The tumor will not be completely removed because the risks outweigh the rewards but there will be an effort to debulk it, presumably during the biopsy. It will have to be monitored periodically for the rest of my life and there will be a recovery period of 2 to 6 weeks for the surgery/surgeries. If everything goes according to plan I will resume normal bodily functionality after recovery including working and driving and yelling at the television.

I asked the doctor whether I'd be able to play the saxophone after my operation and he said yes, I would. I think this is an awesome perk because I do not currently know how to play the saxophone.

Anyways, I expect to know more on Thursday as there is not yet a fully realized PLAN and there are many variables so I will attempt to make an update at that time. Plus I'm still completely terrified of Bernard Karmell Pollard so, if nothing else, it'll be nice to continue to have a place to share.

Just to close this out, I'd like to say how overwhelmingly moving and encouraging it has been to hear from everyone this week. Literally hundreds of text messages, emails, Facebook messages, Instagram comments, messages relayed through friends... not to mention the prayer lists, prayers, offers to help... These types of things make me uncomfortable but in the best way. Thank you. Thank you.

Pinky and the Brain Tumor

I've been reluctant to share this because we don't know much about it but I am currently in Kennestone Hospital and apparently have a brain tumor of some sort. Yes, seriously. No, it's not necessarily going to kill me. This post is to collect the whole thing in one place to preempt questions and provide updates if things get crazy. I'll supposedly know for sure by tomorrow but the CT scan and MRI have given way to only the most precise of medical analyses with phrases like "probably benign" and "If I had to wager on it, you won't require brain surgery." When asked to pay the bill in a few weeks I will tell them I'm paying it "probably this month" and "if I wagered enough on the Patriots game."



SO WHAT'S THE DEAL? Well, I've been batting with vertigo, dizziness and weird rushes of blood to the head for several weeks. It seemed to completely go away two weeks ago but resurfaced this week and was at its worse last night (Wednesday), expanding to include temporary numbness in one hand, temporary slow/erratic speech, nausea, vomiting (x2) and horrifying bouts of what the medical community calls "driving like an old Asian woman." We came to the Kennestone ER Wednesday night and they admitted me as soon as it was clear that my brain had grown so enormous that it was trying to escape my already enormous head. This, as I educated the Kennestone staff, was occurring as to allow my brain to fulfill its destiny as Krang from Teenage Mutant Ninja Turtles: 



Continued... Then the CT scan convinced them I'd need a MRI. The MRI convinced them I'd need blood work and now I'm waiting for that. In the meantime they have me on steroids which have helped immensely in reducing the size of the tumor and after only two rounds of this I feel a lot better (no headaches, rushes of blood, racist Asian tendencies). I also now have documented proof for my wife that I do, in fact, have a brain. So that's nice. As an aside: I can switch to the word lesion instead of tumor if it will make you less tense... or switch to the phrase "moist venomous growth" if you're in the camp who takes delight in my discomfort.



WHAT'S NEXT? Well, the most likely outcome is confirming it's a benign tumor and then undergoing some brain fluid drainage via shunt, some other meds to shrink/kill the sumbitch (presumably more steroids but I don't recall) and some various outpatient crap. The shunt will suck but otherwise this should be fine. I'd get to go home tomorrow (Friday) and hopefully make it to the record store before they close.
The next most likely outcome would require radiation to kill it. Certainly not ideal but most likely done in a day plus recovery.
The last possibility, not yet officially closed off, is that it's malignant and they have to do big time brain surgery. Don't want to think about this so not going to force myself to by elaborating on it.



(My shunt won't involve my head zipper being unfastened, nor will it involve substantial peeling back as pictured)

WHAT CAN I DO TO HELP? I don't believe in prayer*** so keep me in your thoughts and swears. I will post an update if it's one of the lousy aforementioned outcomes and encourage visitors. Not that you can't come now (Kennestone Blue Tower room 543) but I'm not bored, obviously not letting it ruin my sense of humor (too late, it was ruined several years ago) and I have my beautiful, supportive wife here to take care of me, argue on my behalf and wipe my butt. She does not yet know I am perfectly capable of wiping my own butt so hopefully she's not reading this. So if you really want to contact me about this (assuming it's the shunt outcome) then send me a text or Facebook post or something like that. 
***I absolutely believe in prayer, this comment was just to get a rise out of my mother. She'll try to act like it didn't work but I no longer require verbal or visual confirmation to achieve the intended level of satisfaction. 



Thanks for reading. -Paul (11/5/15