Catching Up On The Way To Duke

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.