Voulez-vous coucher avec moi?

Because believe me, I'm sleeping about 16 hours a day right now.

Okay, so this blog obviously ain't getting a daily update. But really, I view that as a good thing. I mean, really, that's actually quite awesome.

That means that we're slowly, somewhat, returning to normal. There's nothing big and huge and burning that *NEEDS* to be updated immediately. Well, that, and there's always the Book of Faces. Which is, to be honest, about my entire audience. But this is up and out there in the ether, waiting to be stumbled upon years later by some other person with a brain tumor, who's been referred over by a friend-of-a-friend saying "See? You're not the only one!" And all that jazz.

With that, I again do refer over to the blog that helped me - The Everywhereist. Oddly, since being referred over by the aforementioned "friend-of-a-friend" (who actually *IS* just one degree of separation away), I've since heard from other friends who don't know her (personally), but do read her blog and sent me her way. Okay, holy smokes, ANYWAY... about 6 months ago, she (Geraldine, the author of The Everywhereist) posted her own list of "20 Things You Can Expect After Brain Surgery."

And, well, really, she nailed it. I mean, home run. It was cool that I read it *ahead* of my brain surgery (well, the second time), so I was a little more prepared for the side effects. Oh, and I really do want to take a minute to do some major self-bragging about one thing.

When it comes to jokes, I. Did. It. I nailed it. I am probably more shocked than anyone else, especially anyone who's ever been under general anesthesia, but I went into the OR with one mantra floating in my head. One goal. One single desire. And I have no f'ing clue how on earth it actually worked, but a few hours later, while still lost in the haze and the fog that is anesthesia and, uh, BRAIN SURGERY, while just barely conscious, my loving, amazing, beautiful, rock-solid pregnant wife spoke to me...and I replied...IN FRENCH.

Yeah. Totally nailed that joke.

It was made even better by a few things on the side.

1. I don't speak French. Really don't. I looked up a few key phrases ahead of time.
2. That's not to say I never took French. I took a whole semester of it in 2nd grade.
3. My mother apparently forgot Fact #2, so when Laura told her, she replied with "But he's never taken French!"
4. The one downfall is that one of my nurses, apparently, *did* speak French. So my joke was undone very quickly.

Yup, that's me. And anyone who knows me shouldn't be surprised in the least. I go in for brain surgery, round two, to remove a grape-sized tumor, involving multiple holes being drilled into my head, using a booger-picking device to create a channel through perfectly good brain (no that is NOT debatable!), and the *one* thing I think to focus on is making sure I speak in French to my wife the second I wake up, purely as a joke.

I did take 3 years of Spanish in high school, and a full year (two semesters) of Russian in college. So I do see how my mom could've easily forgotten about something I took 28 years ago. Especially in the middle of wrangling Teddy and making dinner and doing all the super-awesome things my parents did while they were in town.

So, yeah. Still here. Alive, mostly. Another appointment tomorrow, and the Coast Guard needs their own follow-up in a week or so. That one's just kinda funny because, while I *do* recognize that the Coast Guard needs to follow-up with their own members, for continuity's sake, does anyone think that my Public Health Service O-4 general practitioner is going to step in and be like "No. You know, I realize your MRIs and surgery plan has been seen and reviewed by multiple TEAMS of doctors over at Walter Reed, but I really think your treatment plan should instead be....." Yeah, she ain't going to. I know she's not - she's actually a pretty good doc like that. (Even if I did admit in a recent post I didn't know who she was.) It's a rubber stamp appointment.

But it does, finally, give Laura the chance to see the new CGHQ building. 

Clinics! Yay!

So, for those of you playing the home game (that is, "friends" of mine on the Book of Faces) you'll have noticed yesterday's joke competition. Let me first say, thank you to all entrants, it was awesome, y'all are hysterical, and this is what I mean when I say "It's been great to have the humor and support of friends and family."

But, it also led to some questions. By many. The most common question was, "But wait, I thought we already knew what Sylvia was. What happened?!"

Eh, sort of a long story. Firstly, about yesterday - had an early-morning appointment with my neurosurgeon for a "wound check," so he could look at all the new scars he created and pat himself on the back. Which he did. Because, seriously, he did an amazing, awesome job. The one "visible" scar is the one on my forehead, and he cut a line that matched perfectly and exactly to where one of my natural creases/furrows already was. Yesterday morning before the appointment I went in to the Station, and I had to seriously POINT OUT the scar for guys to see it. So, two weeks after surgery and guys already can't tell where some dude cut into my skull, *I'll* give him props that he did a great job.

I complained about the stitches, so he cut the remaining three out. He said, "They should dissolve, but they're the type that'll take another month or two, so yeah, I can trim them out." And out they went. Last night, for the first time in...uh...4 weeks? 3 weeks? Something... I had a normal shower. With real shampoo. And without feeling fishing line in my hair.

So then Doc starts talking about Sylvia. The pathology report has not yet been signed, and that's okay. She's still benign, non-cancerous. She's still something that was (hehehe...*WAS*) just a lump in my brain. But instead of the tiny little sliver that was initially shaved off for the biopsy, this time they've got the whole damned thing to play with. So they can test her with all sorts of stains, and reactive chemicals, and microscopy thingies. I dunno. I'm not a frikkin' neuropathologist. But in any case, there's a metric buttload more of her now, so they can run all sorts of exotic tests.

So, there is the *possibility* now that she's not a central neurocytoma. Could have been something else. They're still testing, but it seems like, from the way doc was acting and what he said, that it might actually be something else, even MORE exotic and rare. But the key there is "have been." Because it still remains that she's out, gone, done. And is still non-cancerous, so still no need for aggressive anti-cancer treatments.

What remains? Well, a small part of her does, in fact, remain in my head. They shaved off layers and layers, but although she was in the 3rd ventricle, she rested on the brain stem and the hypothalamus. Both are sections of what the Doc called "important brain," and he told me ahead of time he'd rather leave bits of her in there than take out my ability to control my bowels. Etc. And to reiterate, I'm totally okay with that.

My neurosurgeon and I basically parted ways, yesterday. He was awesome, and you could tell (Laura noticed this, too) that he was really happy to have had me as a patient - that my case definitely went in his book as one for the win column (like, hopefully, UNC will do to Dook tonight). He was a great guy, brilliant neurosurgeon (seriously, is there any other type?), and he genuinely seems to think everything will be coming up roses.

Moving forward? Well, tomorrow is my next appointment, this time with the oncology clinic. This doctor keeps coming with rave reviews - everyone says he's really one of the best and VERY good at what he days. He actually works in two clinics - neuro-oncology and radiation-oncology. He's taking over my care - all my follow-ups and treatment plan forward will come from him and his team. The word from the first doc - the neurosurgeon - is that it *might* be decided to just leave the bits of Sylvia that remain with no further treatment, except to monitor that she doesn't start regrowing. (Can anyone say MRIs for the rest of my life?) Or, there may be the radiation treatments. Right now, we don't really know. And tomorrow's appointment alone may not decide.

So back to the beginning of this post - in the vein of a "Yo mamma..." joke, I started a thread of "Your tumor's so rare..." jokes. And they were epic. So I'm going to reshare them here, because they are quite funny. And please, as before - feel FREE to use the comments section to come up with your own. (If anyone on here is concerned about privacy and having your name attached, please let me know and I'll take it off.)

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Rob Grau: Your tumor's so rare, it was just appraised on Antiques Roadshow.

Benjamin M Atkins: Your tumor's so rare, if it lived in Chicago it'd be a Libertarian

Jen Morse Durham: Your tumor is so rare, if it was a guest on the Maury Povich show it WOULD be the baby's father!

Kevin Ham: Your tumor is so rare, that when children all across turn 12 they're told that it doesn't exist, and it's actually their parents who put the presents under the tree at Christmas...except it's real.

J Michael Charland: Your tumor is so rare They made a holographic pokemon card for it

Christopher Gorski: Yo' tumor so rare Lloyd's of London didn't know what to do with it.

Christopher Gorski: Yo' tumor so rare I heard Andy Williams singing a song about it.

Christopher Gorski: Yo' tumor so rare I heard Ahnold gave up and got out of the movie biz.

Kaiti Fenz-Trimble: Your tumor's so rare even conspiracy theorists don't believe in it.

Annie Lusk: Your tumor's so rare the leprechauns tell their babies legends of it.

Rob Grau: Your tumor's so rare, Moby Dick is jealous.

Lynn Brugnolotti: Your tumor is so rare, there's an environmental group studying it.

Rebekah Morgan Klein: Your tumor is so rare after they picked it, it ran into a falling bowl of petunias and a rather surprised looking whale...

Bob Goley: Your tumor is so rare it's as common as someone BORN in Washington and still living there 65 years later.

Andy Greenwood: Your tumor is so rare it's the being made into a movie. "Indian Jones and the Tumor of Sylvia"

Stephanie Porto: Your tumor WAS so rare that it had stripes (medical parlance - when you looking for rare is that you are looking for a zebra in a herd of cattle.) But I really think it was a misplaced cheese ball.

Lisa Biegel*: Nope, it's not rare - looks like the common U.S. tumour with the second "u" missing ; )

Benjamin M Atkins: Lisa Biegel*, well, it IS pronounced "TWO-more," not "tomb-OUR." Silly Poms (and their "subjects") inserting perfectly useless "u" where it doesn't belong.

(*My good friend Lisa is a former flatmate from when I lived in Perth, Australia. She now lives down in Albany, West Australia, having been born and raised in Zimbabwe and spent a period of time practicing law.)

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I hate to show favorites, but I do rate Bekah's reference to Hitchhiker's Guide to the Galaxy as #1. Rob's Antiques Roadshow and Jen's Maury jokes are a close second and third.

Ice is back with a brand new invention...

Wow man. Almost made it a whole WEEK without an update to the "Blog." Must mean I'm back to normal. Or on my death bed. Meh, take your pick.

Okay, gallows humor aside, no, I'm not on my death bed. For the most part, I've been doing okay. Although, "okay" has a completely new definition around here. I take my pills. I get yelled at when I don't. I help with Ted as much as I can. I sleep. A lot. I almost feel guilty about the amount of sleep I get. (Note the use of the word "almost.") My pregnant wife schedules appointments, gets Teddy to daycare, yells at me for missing meds, cleans the house, cooks meals, runs the house...I cannot thank her enough. It's really quite amazing just how awesome she is. Don't mistake me, I'm not surprised - I always knew she was awesome - it's just awesome to see it in full effect. Awesome.

We've been blanketed by snow, multiple times now. The DC region ain't built for this nonsense. On Tuesday (I think...one thing that definitely does happen is the days run together) we were awoken by the phone ringing. It was my neurosurgeon's office calling to reschedule Wednesday's appointment on the assumption the snow would cancel it. I groggily requested the next most available one, somehow committed it to memory (which is, really, quite a feat these days) and went back to sleep. Upon re-waking up a few hours later I passed the info to Laura, only to find I had, in fact, double-booked with something else. But little Ms. Awesomesauce got on the phone and shuffled and dealt and got everything L-7 squared away.

Which, again, super sweet and awesome, because, yes, we got hammered by the snow. And just when you think it's FINALLY done, there is no more that can possibly fall...you look outside, see more white crap in the air, and mutter a few words which, if they were  typed here, would result in my nephew Liam pointing out "That's a bad word....that's a bad word...that's a really bad word..."

(Which, apparently, happened once WHICH IS WHY I TAG THESE STUPID THINGS AS "NOT KID FRIENDLY" -!!!!!)

The wounds seem to be healing. The one *on* my forehead is starting to gunk up and peel Dermabond, which is rather reminiscent of the gooey glue they use on junk mail. I can feel the sutures up on top of my head, but they aren't dissolving (yet) and just make for uncomfortable showers.

Something never specifically covered, but very much implied, and I think most everyone figured this out, is that I only ever had one (additional) brain surgery. Two total, the initial biopsy and then the booger-picking. Doc was really good. Going into the second surgery, there were a bunch of questions I still had. When they came to ask me, I pointed out that I had *not* signed my "informed consent" paperwork, and would like to talk with the Doc briefly. I also made it known that I wasn't really having second thoughts or thinking of cancelling the surgery - I really wasn't - I just wanted to clarify a few things.

Doc was really good about this. The whole team was really good about this. When I made that known, the night PA paged the Doc and sent him a text, so he'd know ahead of time. Then, as they were prepping me for surgery and wheeling me to the PACU (Pre-Anesthesia Care Unit), the good Doc appeared out of the stairwell having been on his way to find me. We talked while I was pushed, Laura right there able to hear everything and ask her questions as well, and I felt much better about what was going on. In particular, he again noted that this was going to likely involve several surgeries, which I stated we were well aware of and accepted that part.

But it turns out, no. The booger-picking went really well, Doc was able to get every last scrap of it that he could. I haven't been fully briefed in, but I believe the feeling is that there was some tumor left over that was fibrously integrated with parts of "good" brain. But nothing left to chop out.

So, where does this leave us? Not quite sure. That's what the 5 million follow-up appointments with 12 different clinics are for. (Okay, maybe not quite that many.) Internet research (which, again, is back on the "allowed" list since we know the type and location of Sylvia) suggests that they'll want to use targeted radiation therapy. But that's all crazy wild speculation on my part (and Laura's).

For now, a weekend of fun and playing. And snowballs.

Mommy and Teddy

Daddy and Teddy (and forehead scar)

Caught in the act! Teddy throwing a snowball at Mommy!

Mantle

Well, since everyone kept asking, here ya go - this is what a "booger-picker" looks like. I gotta come up with something awesome for it. It shall be a permanent fixture on our mantle, wherever we go.

What's Post Brain Surgery Like?

Ben is much better at describing what it's like after brain surgery. (Like someone drilled a whole in my head!) He would tell you that most of his days are okay. Especially after the anesthesia and surgery, I guess most days are way better than that!

Physically

• Lots of intermittent fatigue, consciousness, and sleepiness. Here's my husband who acts and looks like himself while watching the Sochi Olympics and can engage in clear and coherent conversation like we might if it was a restful Sunday. Then, the tiredness hits, and the next thing I know is he's out in full on sleep mode. It does not take long for him to fall asleep in the rocking chair with Teddy. We're hoping with a few days, he will continue to recover bits of energy. We're planning on keeping activities small with Teddy going to daycare during the day while we do a few chores, appointments, and rest.  
• The pain either changes or has a few different layers. The numbness must be wearing off. Even though he's stayed consistent with a treatment regimen to manage this inflammation and pain, what he complains about changes. 

Emotionally

• "Holy Tamale, I've had brain surgery!" It's still pretty shocking. You may think one would know this going in, but it's not like riding a bike where you remember the experience. Even though he already had one episode of brain surgery to create a new CSF passageway and biopsy the obstruction, you are clearly not awake for it, clearly not active in much of the event, and pretty much only remember everything the anxiety and side effects of the treatment. 

Medication 

• Do you have a pill box and a timer? This one needed help with the multiple medication regimens they sent him home with. Five titrated over the first few days and were related to each other. He's still using the Tylenol to manage the pain. He hasn't requested or received any pain medication since the hospital. Having someone who hands you food and medication helps- his fatigue does influence his motivation to obtain medication. 
• We're glad that ours locks as hard as it does, but sometimes the force to open it has chipped three nails already and sent medication flying. It's a scary thought as a parent, and honestly sends you into slight OCD check-recheck moves.  

Having a Toddler

• Feeling like you've been benched because you've been in the hospital is probably the hardest emotion. Teddy certainly squees when he sees Ben and gave us incessant dah-dah's while he was hospitalized. He's very curious about the scar on dad's head, but he's also giving him a little bit of room because of the fatigue. Give it a few more days without Nana and Pops and with dad on the mend, we'll probably see a change again like last time. 
• Use their downtime for yours. I don't care if it's laying down, sleeping, or putting away laundry (which seems to be in large quantities these days). Use it. 

What Helps? 

• Jokes, cards, e-mails, videos, pretty much anything to fill in the conscious time. So many of you have rocked it, please keep it up. It really makes a difference to know you care! 
• Regular life - we still care about you! It helps to hear what you're doing, enjoying, annoyed by, or mastering!
• One big calendar and an excel sheet for all of our follow-ups. There is no easy system to track this information, and I am in awe of families who master the art of scheduling, whether its kids and karate or older couples with multiple appointments. 
• Peer navigation. Those who have known someone or been through a brain tumor diagnosis - wow and thank you for speaking up. The community is so small, the public information so scant that your insight is incalculable. 
• Forgiveness that we are not 1:1 on follow-up. 

Accepting Dysfunction

You will find that wifey posts take on a therapisty-kind of talk. It is because metaphors and analogies ease anxiety. Often during these times where I wonder if I’m handling things the way someone should and balance it out to being 32. Honestly, no. Three weeks ago, I was trying to get into prenatal yoga classes and taking a quilting class. I was getting all my CEU's updated so we could go to Puerto Rico after bambino #2 was born. I was enjoying being a part-time worker and full-time mom and wife in an amazing family and enjoying taking the time to look at recipes and even go out to the zoo when it was not freezing. 

I am a medical social worker, and this sucks (apologies for my diction to my nephew if you are reading this). My world was helping people keep insurance, providing education, enhancing coping, finding lodging when working in oncology. By the time most families got to me, many life needs stabilized, but the young ones were the toughest – society did not have a response. If you had cancer with a family at a young age, it was tragic. As your age increased, the responsibilities of being a parent and ability to focus on the spouse shifted. The financial burdens were large, and the resources small for families with young children. The young adults with family always intimidated me, and now that we’re on this side of the aisle, it is all so easy to grasp how something like this changes your life especially if you don’t rebuild it, taking what you can to appreciate, and having courage despite the challenges. We’re not going to win every battle – even just in scheduling an appointment. How can I help?

In the jail system, it was helping with adjustment. Are we adjusting? Not so sure it’s in the cards for the short-term. I often would use the metaphor that an early jail sentence was feeling like you were staring across the Grand Canyon. Seeming so vast and rugged, it seemed impossible to cross. Having seen jail sentencing (from afar), I would explain that it was more like being at the base of the Mississippi River. More than a mile wide, the currents were incredibly strong. You have to build boats, find bridges, and learn to navigate the waters lest you allow your own emotions sweep you away.

There is only so much in the day that we can talk about a brain tumor and the impact on life. Some days we are learning how to go forward and others what spins the boat around. To be able to keep our boat from sinking has only been because of the support of family and friends, prayers, non-casserole dishes, and hope. At first, Ben and I talked about the analogy of pulling off a band-aid… it’s more like pulling off a cast and, honestly, what saves you are your family and friends while you gather the pieces, find your footing, and begin take one step at a time. (I’m still trying to tone it down from 3 or 4.)

It was fare easier to be a companion to my husband when I was there 36 hours straight, in the ICU vying between supporting him and finding new ways to cope with the anxieties of what a diagnosis like this could mean. In the beginning, the possibilities seemed endless, and much like his second surgery, the options for his treatment are being reducted. Between those two points, the waiting came. The internet research they warn you not to do (research is one of my ways to cope with understanding). Thinking ahead seemed insurmountable past this one little grape-sized lump that we didn't know and still don’t understand. I am learning way more about the brain than I ever genuinely wanted to know from this perspective. It is hard to not go between craving the blissful life we had unaware of this condition… the life before… and the utter thankfulness for having been given options.

What we do know is surgery likely won’t be his only treatment option. They were able to remove most of this stupid (medicine calls it indolent) tumor.  That’s the first step. Our next consults will involve speaking with a few different oncology services. We will need to learn about if the tumor has calcified, differentiated, how much interfaced with the thalamus, and what treatment to that area entails. None of these appointments fit in a particular order. This preference for order does make me feel like a Vulcan. The system's not logical, but (thank god, I’m human) there is some kind of system there, medicine is there, providers are there. Thank you for the surgeons and clinicians, nurses, and support team. 

For as much challenge as it was to see patient cases as a social worker, it has given some unique tools in these situations. One, fly off the handle and use the pregnant hormonal card as much as they allow you. Just kidding. One, know that not all computer systems and scheduling systems align. Two, know that discharge plans can get printed at different times. Three, know that if you have a typed one, the extensions of the numbers on the list might be right but those early numbers are wrong (because most folks in the hospital only type the last five digits). Four, seek helpful people. After a series of frustrations (between where my husband was ready to redo his own IV line and listen to a severely depressed charge nurse/all others were amazing/ tell him the line was still useful to confusion in the discharge planning process like getting called for appointments before either of us even received news of the MRI), I sought the patient care advocate to just try to bridge the gap (because my experience had been that little birds in the ear prevent further error). Just touch base with the team. Instead, I found the honus getting put back on my husband the patient, who I wasn't sure was having short-term memory issues due to brain surgery/anesthesia/all of the above, or myself when I started hearing their assessment of truth in the situation about what they knew not what I knew. Whether you need it or not, forgive them, forgive yourself, and take a new step. You can only fight so many battles. Don't fight the side that is on your side (didn't Rome learn this time and time again).

Accept dysfunction happens. It’s not going to happen where we expect it. I didn't expect it in the patient advocacy office. I didn't expect it with a charge nurse, but providers can have rough lives too. But, know that you might find the solution in another rare or unexpected location (like the MRI tech who fixed his line).  I am also learning more about the pros and cons of the military treatment at Walter Reed – with more lax discharge times also comes less compressed treatment planning even though the medical providers exercise the effort pull plans together. We are probably not the first to experience these challenges, but maybe that's where we will eventually be able to help others. Also accept that asking questions and adjusting to the system is a part of the process. I cannot attack the system that treats my husband, like when getting blown off by someone saying they’ll pass along the request and does not. I can only seek what works and be as prepared as possible.

There are many larger questions with which we are grappling. My mother, father-in-law, and husband would all tell you I worry far too much. Do you remember the famous line by Steve Martin in Father of the Bride with crazy lessening with each generation? I come from a line of worriers. It comes in handy to handle crisis, but it can be a pita (sorry again to my nephew) at times. With the first phase (if you will) of his treatment, we were and remain thankful for all the blessings we have been afforded in life and the sweetness of the day, being parents, adult children, able to do any task. As we approach this second phase of treatment, it seems like we’re given more time to spin our wheels and really have to focus on what we simply want out of the day and what we need to get done.

We’ll get there. We’ll refind steering the keel to direct the haul. We’ll refind the strength of the sails and master the new winds. We’ll manage our short-comings, often because of the love and support of family and friends. We have a great team. This is our first storm. We at least know how not to get smacked a second time by the boom.

Thirty years ago (1982), they identified this storm (central neurocytoma) as different as others (tumor types). Twenty years ago, the international community adopted it into international recognition and were still researching how to improve radiation treatment. I will never again idly wish that we were ten years older into our careers or fortune, when it has been the careers of researchers that will hopefully  have the treatment needed to heal my husband.

I may not have all the answers at 32. My husband may not at 35, but hopefully, we will be able to come out of this better and stronger. In the long game, we are most definitely adjusting. It's the short-game that seems to be the most intimidating. That is my faith. Courage every morning. Love and humor every day. Hope every night. This is where I am suppose to be.

Departures

Ben's folks left today. Their assistance has been incredible. Between the emotional and physical exhaustion of these events, it was great to see Teddy blossom under their watchful eyes. From learning new words to making animal noises (like a monkey) to doing things upon instruction to letting us know that he needed a diaper change, our little man loves being a help and is enamored with the world. Fred even sent me to bed after finding Teddy and I trying to regain sleep this morning. Grandparents are amazing!

Daily?

A daily update? I mean, why not... There's not much new to say - just something to pass the time, really. I'm at home, recuperating. Mom and Dad are here still, and have been a HUGE help. Truly cannot thank them enough for all their help. Making meals, playing with Teddy, doing some basic grocery shopping... I guess that's what family is for.

Plan is, they're going to leave tomorrow. We've got a pretty good handle on things around here. We're starting to settle into a new form of a "routine." Whatever that means. I've got 30 more days of convalescent leave (which is to say, uncharged time off work). Laura's able to manage Ted and get him into daycare. Ted's able to maintain a schedule and routine of going into daycare 5 days a week. So things are starting to advance to "normal."

I've got a metric buttload of appointments coming up. Again, with the family thing. This time it's a hat tip to my amazing and beautiful wife who was able to schedule all these appointments for me. I do count it as fortunate that the military Tri-Care system does allow a spouse to schedule appointments on one's behalf. Otherwise this would have been a nightmare.

The scar on the front of my forehead is where they went in and removed Sylvia.

I mean, at the end, I really do find this all to be utterly surreal. I'm still questioning if this all really happened. It's just...crazy. Almost incomprehensible. Did I really just go from normal and healthy, to bad headaches, to double vision, to diagnosed with a BRAIN TUMOR, to biopsy, to resection, to back home? All with a wife who's nearly 8 months pregnant? And with a 20 month-old son at home? Do you not see how this is hard to fully grasp?

I've been told by others how they're "impressed" with how I've handled it. That I'm some sort of superhuman for being able to tolerate it all. I disagree. There's nothing impressive here. It's what we do. It's the human condition, it's how we react and relate and respond. Sure, we all would have responded differently. But we would have responded in how our character was raised and formed. We all respond based on our past personal histories and experiences. I'm not surprised at how I've handled this. And I'm not that glorious and self-congratulatory. I was presented with a challenge, and I faced it. With fears, and anxiety, and doubts. There were moments of utter terror and the occasional instance of pure bliss. But you can't run and hide from it. There was a tumor in my brain. It needed to be dealt with. And, thus far, it has been. So, while not quite the "end of story," that is the story as has been laid out.

Doing good. Laura's putting Teddy to bed for the night, I'm about to head upstairs, take a shower (!!!!!), and go to sleep myself. After all, tomorrow is another day.

TMI

For many of you, this will probably go in the category of TMI. Too Much Information. Why did he feel it necessary to share that. But for some of you, you shall share in the wonder and glory that it is. You will understand, you will get it. You will send me congratulations and virtual high-fives and know that I have truly accomplished something noteworthy and worth pursuing about. Regardless of your prudish Victorian ways.

I. Pooed.

I did. I dropped the kids off at the pool. I took the Browns to the Super Bowl. Got in my AM BM. Dropped off a spineless brown fish. Logged into the toilet to make a huge download.

And it was GLORIOUS. And I feel so much better. And there will be more to come, and I may or may not post about it. But for now, know that I'm feeling GREAT!

Home sweet home

Well, I'm back home. Finally. I look back at this blog and it's nice because it helps me recreate the timeline. As in, I know I went in for surgery on Tuesday around noon. I have absolutely -0- recollection on Wednesday. I mean to say, that entire day just simply doesn't exist for me. I'm sure I was awake, and I did something, and probably even talked to people. I had to have eaten. I was in the SICU, and I think I can recall some vague memories. But really, not much.

Today, I can recall. Thursday. It really felt like a whole bunch of sitting around for no reason. But there was reason, and I realize it. The visit from neurosurgery. The multiple discussions on discharge instructions. The talk about the various pills and prescriptives and what's crucial and what can be skipped. The follow-up appointments, with radiation oncology, medical oncology, hematological oncology, and neurosurgery wound check.

So much more still to go. And yet, so much behind us. The speed with which everything happened is just surreal. It's hard for me to truly recognize and appreciate everything that's happened over the past two weeks. From nothing at all, to headaches, to diplopia, to diagnosis of a brain tumor, to exploratory surgery, to recovery, to resective surgery, to home.

It almost makes no sense. And yet, it's happened. Here I am, sitting at home, at my desktop computer, typing away, with a slight pain where there's a new hole in my head. I've got a titanium plate and a few screws on my forehead now.

It's all just unreal.

Out

I'm out. Brain surgery complete, they picked the booger. Doc feels really good that he got better than 90% of it. They do feel that there may be a tiny bit left that was "integrated" with the good tissue. They may just leave it, or they may attack it with radiation. I'm still waiting for the consult from radiation oncology.

Thanks go out again and again and again for all the well wishes, the chats, and the prayers. Words cannot describe how much it helps. I've had a hole cut in my head, a tumor sucked out, and a drain installed and subsequently removed that regulated my intracranial pressure.

I'm good. Still in the hospital, but doing good. Possible discharge today or tomorrow. But again, let me make this completely clear and unequivocal: a large part of the reason I'm doing so good is because I know that I and my family have the love, help, and support of just so many people. Every single one of you can and should take pride in knowing that you are a very real party of my rapid recovery.

Thank you, thank you, thank you.

Go time

It's booger-picking time.

And I get to keep the rotorooter.

Fear

This is the raw version. The no jokes, no witticisms. This is me laid bare.

Fear. Pretty much since the dawn of writing, man has written about fear. You can find volumes and volumes, probably enough to fill an entire library with it.

It comes in so many different forms. I've certainly been afraid before. When I nearly fell of a cliff in the Australian Outback. When I jumped out of an airplane. When I got caught forging my dad's signature.

Fear can be a good thing. It warns us something is wrong. It can be a bad thing, crippling us from mission accomplishment. But what about when it just is?

Because that's what I have right now. I have been around the world, I have done done crazy things. I have felt fear before. I have been scared before.

I have never been as utterly terrified as I am right now.

I can't ask you to be in my shoes. There's no way to imagine it. I wouldn't want you to. 3 weeks ago I was healthy as a horse, driving fast boats and planning a transfer. And now I'm prepping for brain surgery.

"It's normal," they'll say. "It's natural to be afraid" before brain surgery. Well, normal or natural or common doesn't take it away. The fears, the pain, the stress.

The leaving home and making sure, making absolutely damned sure that the last words I said to my son were "I love you," even if he'll never remember it.  That's what fear is.

So why this, and why now? Because I need to lay this bare. I need to say thanks. For the chilli, for the pizza, for the lasagna that's allowed us to have a seemingly normal life. For the thoughts and prayers. For the med-types who've shown a keen interest and helped us ask the right questions, and have provided that voice of reassurance. For the trip to the zoo that gave just a few hours of a glimmer of a normal life.

I try to downplay it. The doc acts like it's routine. I go to my default position, humor. But tomorrow morning, they're going to drill a hole in my head and try to remove a brain tumor.

Fear.

Fruit Loops

 After a stress-free meal of beef lasagna, Ben was admitted tonight into Walter Reed to be prepped for tomorrow's initial surgery (minimally invasive procedure to reduce/remove Sylvia). Even though he was a late arrival at 6PM with permission from his surgeon to eat as much steak as he’d like before midnight, we were still impressed by the admission process.

In my past professional life of hospital social work, I did not get called in on the 'successful' medical cases. The admissions process was chaotic. The family care was chaotic and undermined by the next crisis or several crises arising in the ER. I remember writing feverish notes about finding family, how a family was coping, providing crisis bereavement counseling, trying to run between coordinating taking families to the floors before the next case arrived, discussing addiction and treatment, safety planning someone into a safer environment, helping patients afford medication, and giving bus tickets. The medical and nursing staffs were on the ball but some also varied in degrees of burnout. That was life at a  Level 1 Trauma Center. During this admission, Ben’s hospital stay is considered planned.

From what we have seen, the same dynamics do not exist at Bethesda, and it's a relief. Even though Ben may not be the typical patient on a neurosurgery floor, the medical and nursing staff's efforts to strive to effective clinical treatment has not faltered. (I'll be honest - I ask a lot of questions before we get there, stay to help, get tons of help from his folks to watch Teddy/the house, and have friends who are dropping off casserole dishes to lighten the load/ie help me not spaz.)  It really makes a difference so we can enjoy a zoo afternoon, go for a walk as a family, reschedule plans, or talk about some heavier subjects.

 Anywho, here’s the difference we’ve seen at Bethesda:

•  The entire process was seamless from letting him go directly to the neurology step-down unit to being welcomed by both shifts and worked up by the oncoming shift. 
•    Instead of making him wait until 4AM to get his MRI, his nursing staff and the radiology staff were able to coordinate getting his MRI right after getting his chest x-ray so he could get more sleep before tomorrow’s procedure.
•    We found the nursing staff to be similarly happy on more than one occasion. I don’t know if it’s the nursing staff ratios, benefits, or commitment to mission for serving fellow service members. The nursing staff genuinely listened to his history (changes in inflection and tone), provide some lighthearted humor, and respond to requests.This maybe an all-level teaching hospital, but it definitely makes for a caring environment! This may also be a military hospital, but they also listened to my husband's request to have a line redrawn. He's a medic. If he's asking, there's a good chance it really needs it.
•    Family was considered inclusive to the patient's health. Even during their efforts to be discrete at change of shift, I overheard how nurses were relaying aspects of the patient's support. This is not always possible with other hospitals because of the discharge planning demand (and it's crazy pressure cooking ways), but it felt good to not feel like family was adversarial to boosting the staff's caring efforts and vice versa.
•   Staff are given reign to make exceptions rather than exclusions. For instance, my father-in-law was able to stay at Fisher House because of the weather and spot availability. I know of so many other lodging homes that would not have allowed it because of being within so many miles of the facility or minimum stays without exception.
•  §  The on-call neurosurgery resident balanced her clinical explanations with humor and maybe a smidgen of enjoyment about drawing on the face. She was also prepared to answer questions about the procedure and immediately responded to providing a more than adequate solution (texting the neurosurgeon so these questions could be discussed).

Which brings me to this picture: Happy Ben with "fruit loops" on his face. 

                                                      (Lookin' good despite the fruit loops!)

Souvenirs

Let me start by saying this: I fully accept, realize, and acknowledge I will not be allowed to keep Sylvia. I don't even want her. If they were sucking her out, intact, that'd be one thing - a grape-sized lump on the mantle would be cool. But since she's going to be chopped up and Hoovered out piecemeal, they can keep her.

But still, I want something. Some sort of souvenir to mark this life-altering event.

I want the rotorooter.

Doc said it was a one-time-use tool. What I'm a little unclear on is, is it a one-patient use tool, or if they do 4 surgeries will they need 4 tools?

And what is the "one time" - then what? I know that, likely, the company takes it back, reworks it, and sells it again. It's not actually bought so much as rented.

But...just in case...if there IS that possibility that it ordinarily gets tossed in the biohaz bag...can I get it? I swear, I will custom build the coolest, most intricate, ornate display box for it. My own, personal, brain rotorooter to go on the mantle. Talk about a conversation piece.

As for Sylvia, I hope she goes to a good cause. I really do hope that she doesn't end up in a burn bag, but goes to science. If she goes to testing and research, that's great. It's awesome to think I may help contribute to new knowledge. It doesn't even have to be a big huge medical breakthrough - just an increased understanding of central neurocytomas.

Or, send her to a school. Give some young up-and-coming budding scientist a chance to learn. Let him - or her - ACTUALLY see what a central neurocytoma looks like under a microscope, rather than having to look at a textbook.

So yeah, find a use for her. Learn something, or help someone learn something. Send her to a lab, or a school.

Except Duke.

How to pick a booger

Okay, so now that we're all up-to-speed and know what Sylvia is, let's talk treatment and prognosis. Or as my doctor so epically put it, let's pick that booger.

Thank you for trying to help demonstrate, Ted, but that's not quite what I've got in mind.

The treatment moving forward is more brain surgery. Very similar to what they already did, in fact. Cut two holes, one to relieve intracranial pressure, and one to do the surgery. Take an endoscope - a camera - and go in, find the tumor, and chop it up and suck it out. Simple enough.

But, well, maybe not quite that simple. And I acknowledge that, and accept the treatment.

Before, they just went in with a simple tool designed to grab a piece for biopsy. Now, we have to use this super-special device designed to pull apart and suck out Sylvia. As was told to me, this is a custom-designed, single-use tool. And as we all sit around doing our taxes, just know that you contributed to the $3,000 to be spent on this device. Thank you.

There are some questions about Sylvia that still remain. When the doc was in the first time, he said she appeared to be very avascular. Not vascular. So, as she grew, she's got some blood vessels, to be fair. I mean, she has to have some blood vessels. But not a lot. This is good thing #1 - less blood means less likelihood of complications or stroke or anything like that.

The other question is a total unknown right now - just how connected is she? Is she a lump, a blob pushing up against the rest of the brain? Or are they connected? Did fibrous tissue intermingle with the rest of my normally-functioning brain? Even the MRI can't see that detailed. The only way to know is to poke.

Apparently it takes a couple of days to get a $3,000 disposable rotorooter, so we're back to waiting. On Sunday, my parents are going to drive up again, and we're going to have our own family Super Bowl Party at the house. Monday, we're going to take them to Base and get them a Base ID so they can pick up Teddy, if necessary. And Monday evening, just after dinner, I'm going to be admitted to the SICU again.

Tuesday around 4am I'm going to get another MRI, just to create a final map of my brain. Oh, another thing they're going to do this time around is to have a "brain GPS" (as was described) so they know at all times EXACTLY where they are. Then around noon, next Tuesday, they go in.

The other part is, and the doctor was very forthright about this, I will likely need multiple surgeries. He's going in with an endoscope, and he can only cut so long as he can see. And he was very honest that it might not last. Because although Sylvia isn't highly vascular, again - she does have SOME blood. So as they cut and suck her out, she may bleed. They'll try to control it with irrigation. The tool will also be able to cauterize. But there may eventually just be too much blood to see and he'll have to stop.

In that (likely) case, they'll finish what they can, pull out, leave the CSF drain in place, and let me rest. After three or four days of stabilizing, they go back in to continue.

I'm not naive here; based on what the doctor said, I expect there to be maybe 3 or 4 surgeries. One would be awesome, but I'm not holding my breath.

The doc performing the surgery is one of the best. He is *the* top guy at Walter Reed for endoscopic neurosurgery. He is incredibly experienced and I have all the faith and trust in him. Everything about him exudes confidence and the self-assurity that he is the right man for the job.

There are possible complications. One thing I didn't get a chance to ask, but will before the first surgery, is: if they have to do multiple surgeries, do they get to reuse the old channel? Or are they going to be drilling multiple holes in my head? Secondly, there is the possibility they may not get all of Sylvia. If she's fibrous and too intertwined, pieces of her may be left behind. That can happen. It's real, I acknowledge it. In the case that happens, the normal recourse is to follow-up with targeted radiation therapy.

But, that's all down the road. One day at a time. I get the weekend to hang out with friends and family, and then I go in Monday evening. Personally, I expect to be in the hospital for 2-3 weeks. That's what I foresee.

Sylvia ain't nothing. I got this.