Get out of jail, free!

An update is due, Sylvia-related. I've been sitting on it for a while, hoping to be able to release all sorts of all-inclusive information, planning on having a good, big, final word...but government bureaucracy moves at a speed that make glaciers look like the road runner. So, let's rewind a bit...

WAY back, when this all started - in fact, JUST as it started, we were preparing for transfer.  On January 17 I submitted my "dream sheet," my list of picks for where we wanted to transfer to. On the 19th, I went to Walter Reed.

As a result, I was placed on a status called "TLD - Temporary Limited Duty." I was medically barred from transfer, to ensure I got close and continuing care. It was "temporary" in nature - not to exceed 1 year. And I got treated, had two surgeries, and things are looking up.

They waited 6 months and, finally, with positive results and follow-up MRIs that showed no aggressive growth, I pushed, and I was finally cleared back to "fit for full duty." I had to fight for it, and follow-up that the paperwork was filed, but it was done - on July 24th, I was cleared and placed back on "Fit For Full Duty" status.

Along the way, I had been discussing transfer options with my detailer (assignment officer). I have a long litany of e-mails going back and forth regarding my career aspirations, family desires, etc. I wanted Puerto Rico, as mentioned, and had medical clearance to go there. But he couldn't do anything until I was back to FFFD.

Well, as mentioned, I finally got cleared, and I sent the detailer an e-mail. I reminded him of our conversations, proudly noted I was okay to transfer, and sent him my personal cell phone number, my home e-mail address, and asked that he contact me "at your earliest convenience" to "discuss my options."

In less than 10 minutes, I got a reply e-mail. In the form of an automated e-mail, with "ORDERS ATTACHED." Nothing, no discussion, no warning, no courtesy heads-up...just orders to report, in 90 days, to the Coast Guard Cutter ALEX HALEY...in Kodiak. Alaska.

I was livid. My XO was in shock. Called the CO, who was out, to relay the news. I went home and had to, somehow, relay the news to Laura. (It was rather humorous, but I'll save that for another date.)

To be fair and completely honest, I (we) did not WANT to go. We had no desire to pack up a 2 year-old and a 6 month-old, spend 20 days driving across the entire continent, to end up on a remote island in the Aleutian chain where I would be gone for 2-4 months at a time, and Laura would have to sign up to receive text message "bear alerts" in case one was spotted in mandatory housing. To be an 18 hour flight away from family and friends, etc. We did not want it.

But there's a secondary concern - what about my follow-up care? I had willingly waived my HIPPA rights to make sure the detailer knew what was going on. So he sends me to Kodiak? On a cutter?

So I contacted my neuro-oncologist, the aforementioned super-awesome Doc Theeler. Told him of the orders. His response was "That's not an appropriate assignment for you at this time. Tell me what I need to do, what paperwork, memo, etc. you need." Because the nearest neuro clinic to Kodiak is 498 miles away in Anchorage.

And that's where the story takes a turn for the positive. Because the Coast Guard is smart, and requires everyone going "OCONUS" (Outside Continental US, anything other than the lower 48) to undergo a full screening for suitability - medical, dental, financial, family, everything. But, one has to be careful.

Because, the medical screening notes that members who are NOT qualified to go overseas risk being designated as "Not Worldwide Deployable," which then means you may be subject to a "med board" - the administrative process of kicking someone out because they aren't medically fit for service.

So, going back to my doc's response, I typed the memo for him. If you've ever met me, you'll know I'm a bit of a policy wonk and very adept at reading and comprehending boring manuals. So I stuck my head into Coast Guard policy - three main manuals. The "Military Assignments and Authorized Absences Manual," the "Medical Manual," and the "Military Separations Manual." I read and knew the relevant sections backwards and forwards.

So, I typed the memo, cited all sorts of policy, sent it to doc, included the reference policy (so he'd know what he's signing), and waited. Well, he changed about 3 words, signed it, and returned it to me on letterhead.

So, if you've ever wondered what a "Get Out of Jail, Free!" card looks like, I now have one. I actually have about 10, because I printed and saved and sent that thing everywhere.

Unfortunately, we STILL weren't out of the woods. Because I took said memo with me to my medical screening with my USPHS PCM doc, she read it, and...

said...

"So what he's saying is, you should get a med board."

WHAT??! How, what...NO!! "He" specifically states that a med board IS NOT appropriate at this time! That my condition is "temporary" in nature, and I should return to full worldwide deployable status in 2 years (with continued positive monitoring).

I was apoplectic. And scared poopless. PCM said she wanted to "consult with colleagues" before rendering a decision. She said she needed a week.

I came back a week later. And she, honest-to-God, asked me why I was there. "Uh, because you told me to come back in a week for my overseas screening?" Well, she still hadn't made a decision on the med board, but she DID say that she agreed that the orders to Kodiak were "not suited" for me at the time. But she would get back to me.

My orders did get cancelled a few days later. So at least there's that - we were now certain that we were NOT packing everything up and moving across country in a month. But still no news on if I'd still be in the Coast Guard.

Finally, someone, somewhere, got brought into the conversation, and cooler heads prevailed. Turns out all the wording and references cited in the memo had the EXACT intended consequence: I was told I would have to file a separate memo of my own, one where I requested a TEMPORARY waiver from PSC (Personnel Servicing Command) to be two years of Not Worldwide Deployable. As part of the waiver, and per my doc's instructions, I can be reassigned, I just need to be located somewhere within "two hours' reasonable commute" of a Tri-Care approved neurology clinic.

My assignment officer has now, more or less, given up and just said "Apply for the normal jobs as part of the AY15 rotation." So I'll be part of the normal transfer process. It's incumbent on ME to make sure that all the places I apply to are able to meet my medical needs. I have been warned not to try and take advantage of this - and I have no intention of doing that. Like, putting down all of 3 primo-awesome places and pretending they're the only places I could go. (A normal list is anwyhere from 50-80 billets.)

So yeah, end result: we're here in Maryland, still. Sticking it out until the normal time, June/July of 2015. I won't even see what's available until January 10, and our final list is due January 30. Orders are usually then sent out around late March/early April.

Doing good. All is well. And every day I wake up without a brain tumor is a great day.

Perspectives

Funny, I say this blog will go to few and infrequent posts, and yet here I am again just 5 days later.

I'm sitting here at the end of the day and thinking... reflecting on today. And it suddenly occurred to me that today was a good day. Which sounds all well and good, but allow me to provide the perspective.

Today was a lousy day. At work, at least. I'll refrain from the specifics, and not indict individuals, but today was not a good day. Mostly a bunch of little things. Annoyances, people not doing their jobs. I went to a multi-agency meeting where the organizer failed to show up because she thought the meeting was tomorrow. Despite 5 different agencies all showing up today.

A coworker and I were just... chippy with each other. And for all various reasons, in the end, it just wasn't a good day. Really kinda sucked, too be honest.

And I got home, and things started coming into perspective. My first thought was, how infrequent bad days are. That, yes, today was really annoying and pissed me off, but how lucky I am that this is by far the exception, and not the rule. Sometimes, a bad day is really good for reminding you how good all the other days are.

And then I looked around and realized how lucky I am to have this amazing family. This incredible, beautiful, wonderful wife who's got my back and supports me through it all.

And these two incredible kids, so amazing and full of life. Teddy, who really is developing a sense of humor. And he is so thoughtful and really does care for his younger brother. His personality is starting to show, and so far it is beautiful.

And Nicholas, this tiny little man exploring the world with every chance we give him. It seems every day he shows off something new and amazing.

That I am so lucky to come home to this is what makes today a great day. That even a bad day at work can be forgotten, and quickly pales in comparison to the blessings and joys that I have in my life, that makes this a good day.

That alone, in and of itself, should be universal. To all you, my dear readers and friends, whenever you have what feels like a bad day, focus on and remember all the good you've got.

And maybe this is an unintended consequence, a side effect. But the reason I'm posting it here.

Because it turns out that today, like every day, is always a good day since February. Because today, I am still brain-tumor free. And that is simply beautiful.

Emotions

Hospitals are all emotional places. They just are, by their very nature, and the hard reality of what happens there. It's not all bad - it's where new lives enter the world and people hear the phrase "We think we got it in time, she's going to be okay." But it is also where just words...not even a phrase, but just the two words "brain tumor" get uttered. Among millions of other phrases, and words, and sentences.

My amazing and incomparable wife, Laura, is a medical social worker and spent years working in the ER at a Level I Trauma Center. She, more than most, is acutely aware of the emotional nature of hospitals.

I was thinking about that today on my drive home from Walter Reed. How much of an emotional whirlwind the last 5 months have been. The challenges we have faced, the fears, the hopes, and prayers. I even started thinking - not that it is in any way measurable - but I wonder, I just *wonder* how many gallons of tears have been shed in Walter Reed National Military Medical Center. The good and the bad. The "I'm sorry, we tried all we could, but he didn't make it." And some of those tears are mine, I happily and readily admit, like the ones that followed "Would you like to cut the cord, Mr. Atkins?"

I had my MRI on May 20th. I'd e-mailed my Doc, and he had already told me that things "looked good," but nonetheless I still had a follow-up appointment to go in and see him, and talk about moving forward, etc. I've raved before about just how incredible MAJ Theeler is - well, he proved it again when he met me in the waiting room and said "Yeah, let's go back and we can talk about Sylvia." I mean, he remembered the damn tumor's name.

Sylvia is, for better or worse, mostly dead. Of course, mostly dead means partly alive, but unlike Westley we're not trying to revive her. Bits and pieces, tiny chips, had to be left in. They were attached to things called "brain stem" and "hypothalamus" and otherwise described as "important brain." Given I enjoy breathing, and controlling my own bowels, I support the notion that we did not risk chopping into those areas.

But Sylvia is "stable." Those remnant pieces are not growing, are not changing, are not showing any adverse reaction to the surgery. I will require follow-up MRIs to continue - again in August and then December. But Doc is hopeful and says every indication exists that this can be safely placed in my rear-view, with the ever so minor inconvenience of an occasional MRI. In fact, reducing down to once every 6 months starting in January.

Something related, and I've made brief and vague references to on here, is that as a result we (as a family) are looking at a possible relocation to San Juan, Puerto Rico. I need to transfer some time. And for reasons I won't bother going into, there is hope that I could get orders to San Juan for a December report date. When I brought this up with Doc, he chuckled.

"Yeah, San Juan would be fine, I can't see any barrier to going there. You just need to be somewhat near a doctor who has 'neuro-' in front of his specialty. Neuro-oncology, neurosurgery, neurology, etc. And actually, I've got a good friend who's down there. We did our fellowship together, great guy. I just spoke with him a few weeks ago. If you DO wind up in San Juan, let me know and I'll type up the referral to make sure you get to see him."

So. Ah, there it is. There's still plenty else going on, and other things that need to happen or be done, but...for now...we're doing good.

And as I walked out of his office, and stood waiting for the elevator, I thought about the past 6 months. I thought about all we've been through, the rollercoaster ride. And I cried. (Crap, now I am again.)

I need to see my Coast Guard doc, and pass all this info along to her. Paperwork needs to get filed, I need to get cleared. I need to talk to my assignment officer.

This Blog will continue, at sporadic intervals. But while the name will remain unchanged at "Death to Sylvia," I think I can safely report: Mission Accomplished.

...And new beginnings...

So yes, I did say this blog was winding down. Life is proceeding, moving on and things are returning to normal. There is still a lot up in the air for us, but much of it is medium- to long-term worries. We still don't yet know about my transfer and when that's going to take place. That leads to a bit of apprehension about how, when, and how easily we'll sell the house. But these are worries that are, delightfully, spectacularly, amazingly NORMAL.

Thing is, you're always going to be worried or nervous about the next thing coming down the road. It's natural and normal. In my line of work, the second you show up to your new duty station you're already wondering about where you're going to transfer to next, how competitive the next advancement cycle will be, etc. And it's great...I mean, it's really AWESOME that those are the types of things I worry about these days, rather than if I'll need another brain surgery.

Though, that is still unknown. I like to believe - I have faith and I have optimism - that we're done. That there will be no more brain surgeries or even discussions of chemo or radiation. Right now, that's based solely on optimism and the limited research on what's happened to others who have had this incredibly rare tumor type.

The first big test is coming up in a few weeks. On May 20 - which is, purely coincidentally, my half-birthday - I've got my first follow-up MRI. The first chance we get to check and see if Sylvia has started regrowing, if there are other spots that require treatment, or if I'm continuing on track towards returning to a "normal" life.

I am still out of work right now. But it's, thankfully, not in any way related to a brain tumor or anything like that. Like I titled this post, it's because of New Beginnings. Because in the midst of all this craziness and mayhem, throughout all the unknowns, and fears, and anxious days waiting for results, there is still good in our lives. In fact, there is great, wonderful, amazing in our lives.

And he was born April 13 at 9:35am. He is Nicholas Vercingeterix Charles Atkins. (The "Vercingeterix" part is a long running joke between me and Laura.) He's a wonderful kid who's doing great, and we are just so lucky to have him. Teddy's learning what it means to be an older brother, and doing quite well with it. All of the "regression" fears we'd been told of and were ready for haven't happened - he's still sleeping through the night and like every other toddler is totally obsessed with Elmo and Thomas the Tank Engine. And Nicholas - as well as Laura - are really doing great.

Next stop for the Atkins family? Who knows... It does look like San Juan, Puerto Rico could be an easy one to get. Just not sure if we want to be that far away from friends and family. Though, we may not have a choice in the matter. They are called "orders," not "requests." One day at a time, one step at a time. For now, time to make lunch.

Winding down...

I suppose the blog here is winding down. Its time has come and past, as ridiculously fortunate as that may be. I will still update here from time-to-time, for sure. I've got an MRI in May that's really going to clarify...well, everything.

I'm now in my 3rd week back to work. The first week was uneventful, and I was put on desk duty. The second week included a much-surprising St. Patrick's Day snowstorm that dumped about 7" on us and shut down the government for a day. And now here we are on March 25 and getting ANOTHER bloody snowfall, though this one isn't nearly as significant as last week's. Though, it *is* sticking.

Late season snow tastes the best.

I had a follow-up appointment with my PCM yesterday. I'm cleared to return to boat duty, but she wants me to do it gradually and incrementally. That's fine with me; I fully understand, and at least it gives me a chance to get out and get hours. (I have to maintain a minimum of 40 hours underway each 6 months to maintain my certification.)

And then, there's the baby. The new kid. He's due to make his appearance in a week or so, but you know how kids are. Due April 6th means might could show up tomorrow. The new nursery is almost ready - and I mean, seriously about 95%. The remaining 5% is when preggo-brain decides to change something. (I love you SO much, honey!)

So I guess, we're doing well here. Life is good and we're slowly finding our new normal. To be fair, there are some anxieties and stressors still facing us. The whole idea of my transfer is still up in the air - there are a *LOT* of questions about that that still need to get sorted out, but it's not urgent. Well, not TOO urgent.

I am sure I'll still update in here in bits and spurts - here and there, announcing a birth, MRI results, etc. Oh, I would like to offer this part up to all friends and interested parties:

My nuero-oncologist at Walter Reed had come to us very highly recommended. And I mean, everyone we talked to said this guy was really the bees knees, not just a brilliant military doc, but a brilliant doc in the general sense. This was driven home when we found out that he did a Fellowship at MD Anderson, the *leading* cancer center in the US. And while there, he wrote a paper about my *specific* tumor type. Right down to the mutation. As in a peer-reviewed journal paper where he shared top-line authorship. And so, with that said, I've got a copy of the paper, and am willing to share it with anyone...everyone...SOMEONE who can translate the damned thing into English for me. I mean, yeah, to be fair I understand parts of it. But at times I feel like those parts are the words "and...a...the...also..."

Hit me up, I'll hook you up with a copy of the article.

Friends rock

I've said it a million times, so let's make it 1,000,001. I've got awesome friends and I really can't thank you all enough for helping us get through this. Thank you, thank you, thank you.

Snap back to reality

Well, this is interesting. I started typing this entry last night, Sunday, before going in to work. I was about halfway done with it, when Laura needed help putting Teddy down, and by the time I came back, it had been eaten by the ether, gone, lost and never saved. That's the price I pay for trying to type a post on a tablet.

I had been talking about some fun, stupid coincidences. How to leave it to me, the guy who's normally healthy as a horse, to come down with symptoms, wait a few days, go in to the ER, get diagnosed with a brain tumor, have surgery #1, wait two weeks, have surgery #2, wait a month, and then have my convalescent leave expire at the EXACT SAME TIME as when we start Daylight Saving Time. I go from sleeping 18 hours a day, to back to a roughly "normal" schedule, and then it's back to waking up at 5am at the ONE time that 5am actually feels like 4am.

Apparently I was snoring and Teddy was laughing at me.

Ugh.

Suffice it to say, I did survive the day. Another tick in the "leave it to me" column is that I return on the same day the Station starts our "CLEAR" visit - the Comprehensive Law Enforcement Assessment and Review. In other words, for the next two days we're getting graded on everything we do law enforcement-wise. And that has a LOT to do with our training and maintaining currency. Which is entirely my job.

Now, obviously, others stepped in and took my job while I was out, and they did a fantastic job. And they knew this review was coming so they prepped and got everything ready. That they could. But here I am, *struggling* in to work at 6:45, feeling like a need an extra, oh, 6 hours of sleep...and they're all being nice. I mean, don't get me wrong, the guys at the station are AWESOME. I love 'em to death. I work with an amazing crew and command and I couldn't ask for better.

So that's how they come up to me. With the "So...uhh...I know you just got back, but...uh...could you help me with why So-and-So isn't certified as XYZ?" Etc.

But then, honestly, that feels good. It feels good to not be treated with kid gloves, to still be needed and respected and treated like part of the team. To know that I do have a place. And that I can seamlessly join back with the Station, and do a job.

So reality is back. Didn't quite land with a ton of bricks, but it's there. Teddy had the most upset face I've ever seen when I woke him up at 5:30 this morning. A look of "Oh crap, I though we were done with this nonsense! What are you DOING?!" The plus side is, getting his tiny butt up at, what was to his mind 4:30, may finally help him return to going to sleep at a normal time.

Although this is all temporary. I know that, Laura knows it, the whole Station knows it...heck, Ted has probably figured it out. Because in a few weeks, we'll be welcoming Atkins #2 into the world and breaking all this routine into a million tiny pieces.

And now, it's almost 9:00, which is another way of saying dear God I need to go to bed.

Side effects

Shockingly, I know, but there are a few side effects to having brain surgery. I've plugged her blog a billion times, but I got a good list of things to expect from The Everywhereist after she had her surgery. So I knew what I was getting into.

And, I'm not going to post here about the TMI stuff. Well, I try not to, but occasionally things do show up.

But I am recovering. I mean, things are, for the most part, back to normal for me. There are no meds I'm currently taking (except Tylenol for headaches, and I haven't taken that in two weeks), the fatigue is fading, I'm returning to normal. I mean, if you were to walk up to me on the street, you'd probably have no idea the ordeal we've been through in the past two months.

Unless you said something that confused me. And then you'd find my "tell," my one dead giveaway that something is abnormal.

How much have I told about the second surgery? How in detail did I get? Hmm...okay, see, here's the thing - the second surgery, the endoscope and "booger picker" went in from a slightly different angle. See they, uh - went in through my forehead.

Seriously.

Like, the doc sliced my skin open, drilled a hole, and the equipment stuff all went in roughly an inch and a half above my eye.

Again, we knew this ahead of time. Doc told us this would be the plan, and he was quite nervous about it. Not the surgery part - the after effects. The side effects. He was really worried about the scarring, and offered to put in a referral to plastics to assess the cosmetics. I told him repeatedly not to worry - as long as it wasn't some gross, horrible bulging scar tissue, I didn't really mind. I've already found my woman, not like I need to look good for the bar scene.

But in any case, he did a *great* job. I mean stellar, amazing, wonderful. The line he cut to access the bone, he did exactly in the middle of one of my natural "furrows" or wrinkles. I mean, stellar job. I have to physically point TO the scar to show people where it is. And that was when I was one week post-surgery.

But there are still other side effects, the type you can't see. And it's all related to this scar.

See, to get in, nerves were cut. And so now I've got this amorphous blob of a numb spot above my right eye. It's difficult to pinpoint the EXACT boundaries of it, but basically, as was explained to me, the skin nerves that work the forehead come out of the orbit (eye socket) and then work up. So, from where the cut, it was normal and expected that above it there should be both numbness and, uh, lack of motor control.

But that's okay, because skin nerves heal! They just heal REALLY SLOWLY.

So now I've got this section of head that is numb. Showers feel weird, feeling my own head feels weird, having Teddy whack me with a car feels weird (if he hits the right spot).

But also - I can't move it around. If I go to raise my eyebrows, well - both eyebrows themselves actually raise. But then at the scar, everything takes a nosedive. It's weird. It's hard to describe. Oh heck, let me give you a picture:

Yes, I am aware of how awesome my hair is.

I mean, see? Both furry eyebrows are up, but then, suddenly, the wrinkles and furrows take a dive south. I can't move them. They just sit there. The rest of the forehead skin tries to pull them up, but they decided, no, they ain't gonna play that game.

There is another factor in this story as well - I now have a plate in my head. The forehead, being as thick and strong as it is, is important bone. So, unlike all the other holes they cut in my head, *this* one needed reinforcing. And because I have to be able to go into an MRI (like I did a few hours after surgery), it couldn't be a simple old steel plate. No, it has to be non-ferric, non-magnetic. And so do the screws that hold it in place.

I've got a TITANIUM plate in my head!

With TITANIUM screws!

AND YOU CAN FEEL THE PLATE THROUGH THE SKIN!!!

I've already had one friend totally freaked out by it, but had to feel it anyway, and then REALLY freaked out. She thought it was awesome. Said I ticked off an item on her bucket list, no less.

So anyway. Not too much going on. Perhaps another entry tomorrow, there are a few things to update on, but really, all's well. Overall - doing good.

With a few side effects.

Snow for sale. $5 a gallon.

This snow is driving me nuts. Another blast hit us, not as bad as was predicted (6-10", actually got about 4-5") but still...

So last week's appointment had to get rescheduled. That was because I woke up not feeling well. I came downstairs, Laura looked at me and told me I looked pale as a sheet, and I went into the kitchen, and within about 20 minutes, threw-up. So that appointment was reworked to tomorrow, Wednesday. (That's the one with radiation oncology.)

Plus, yesterday, I was supposed to have my CG appointment. That got cancelled when the whole federal government decided to shutter its doors for the day. I've called and left a message to reschedule. Nothing back from 'em, yet.

By the numbers, at least, I'm supposed to return to work a week from today. I do, for the most part, support that idea. I need to get back into the swing of things. This recovery has been long and slow, but I think it's time to start getting more active. That said, I don't think/feel like I'm ready to just jump behind the helm of a boat with 450hp, mount a 7.62mm machine gun to the front, and go crazy. But it is time to start thinking about the return.

Thing is, it'll be a short return. Laura is due in early April, and the plan always had been to then take a month off (same as I did with Teddy). So, all goes according to plan, I might just be at work for 2-4 weeks and then back out again. But at least this time, when I go out it's for an awesome, wonderful, joyous reason and not because I need further surgery.

I do still talk to the folks at work. Sounds like everything's going along - orders have come in for some, there's been a little "drama" (nothing out of the ordinary, there's always something going on), and with the bitterly cold temperatures, not too much has been going on.

I did go out and shovel the walk yesterday. Really. That's how I'm able to estimate 4-5" of snow. I was able to put on some snow bibs, grab the shovel, and actually clear the steps and sidewalk. It felt great to actually *do* something again.

Oh, and seriously - snow for sale. $5 a gallon, +S&H.

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.)

---

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.

Parental e-mail

I received an e-mail from my dad the other day:

---

From: Fred Atkins

To: Ben Atkins

Sent: Tue 1/28/2014 16:48

Subj: tnagled tongues

Today, Mom was talking to a friend, telling her about how your seminal fluid had backed up!!  Caught herself and corrected to spinal fluid.

I had a friend ask me how you were doing, and I said, “pretty good, we’re just in limbo now, waiting for the autopsy results.”  I realized my error immediately and fixed it, but not before her jaw dropped and she said “Oh no..”

---

Maybe it wouldn't hurt for them to get checked for brain tumors, too...

Best news possible. And best doc ever. Trust me, it's worth the read.

Uh, okay, wow.

This is going to be a long one. There's really no way to break it up. In the live version, you've probably likely seen it already on the ol' Book of Faces. Let me start with the bottom line: Sylvia is easily beatable, came in as being the absolute best diagnosis possible.

The story.

After an anxiety-filled night Wednesday, and all those questions swimming in my head, we woke up Thursday to a new day. Laura took the Tedster into daycare, and I got up and got ready for the day. I prepped some boxes for UPS, had breakfast, and got dressed. In retrospect, I kinda wish I'd taken a picture of that alone. It might sound trite, or overly dramatic to some, but I put on my uniform.

If I'm going to Walter Reed, I'm wearing my damn Coast Guard uniform. I am one of "those people" who's actually really into it. I love my job. I love my branch. They do a damned fine job of taking care of me, and I have pride in being a Coastie. So even though I could have just worn jeans and a hoodie, no. I chose to put on my full ODUs. So that anyone walking around Walter Reed doesn't see just another of thousands of anonymous patients - they see a Coast Guardsman.

Anyway, wore the uniform.

We went in super early. There're other things to be done. Walter Reed also just happens to be where Laura is having her OB care, and she was due for her gestational diabetes test. Which takes about an hour. She has to drink a bottle of this stupid syrupy sweet stuff, and an hour later they do a blood draw to see how her body is reacting to it. So she got the "lemonade flavor," which, according to her, tasted like flat Sprite syrup. And then she sat for an hour.

I made use of the time to actually go and FIND the neurosurgery clinic. Oh, and since SHE got to eat something nice and sweet, I hit Dunkin' Donuts so I could get something nice and sweet. Apparently, it's not the same thing to her.

Boy that's an unflattering photo.

Blood draw complete, we went and had lunch, and then back over to the neuro clinic.

We were led back to an exam room, sat down, and waited. And you know how you find the stupidest things while you're waiting in the doctor's office? The clock was off.

Little $4 analog clock hanging on the wall, showed a time of 9:30. After 2 minutes it drove us both so nuts Laura fixed it, and reset it to 11:58. And then we waited. And waited.

And waited.

All the time the nerves are building. "It's probably his lunch time." "Why's it so urgent we had to come in on his lunch?" Etc.

Around 12:20 the computer in the office blinked on, and said the doc had logged in. I knew what that meant. It meant he was on the way. He just remoted in to that desktop. 2 minutes later, there he was.

So, a wound check! Asked a couple of questions, looked at the sutures. Snipped one of them. And we're done, right?

Nope. Time to talk Sylvia. And this is the one and only time where he kinda screwed up the "how to talk to patients" part, because he led off with this: "So we're waiting on the final pathology to come back, but we're fairly certain we know what it is. Our fellowship-trained neuropathologist has signed off on the report, but your tumor is of a type so exceedingly rare that we wanted to send it off to the Joint Pathology Center just to get them to concur."

"So exceedingly rare" scares the shit out of patients. Because "so exceedingly rare" means very few people have very little experience treating it. It means there may not be established protocols for how to deal with it. It means that everything you're doing is a total crapshoot and I just became a guinea pig. It means...God, it just means everything...

And then, he gives me the name. Sylvia is: A central neurocytoma.

And this is good.

Rare, yes. But this is the one time you roll the dice and rare is a good thing. She's basically the most benign, boring, basic, lump my brain could possibly produce. I guess, typically, when something does go wrong and you get the diagnosis "brain tumor" it's usually something more aggressive and malignant and dangerous. She is so rare because she is so stupid.

Let's take a moment to reflect on how rare she is. Of all diagnosed brain tumors, a central neurocytoma occurs in 0.5% of them. Now, OF THOSE, only approximately 3% occur entirely in the 3rd ventricular space, where Sylvia is. I'm a stats guy, so let's look at this for a second. According to the American Brain Tumor Association, 69,720 people will get diagnosed with a brain tumor this year. So, 0.5% means that ~350 people will have a central neurocytoma. Of us 350 people, 10 of us will have it in our 3rd ventricular space.

So we continued to talk. Doc asked us if we'd seen the images yet, which was a "no." He was a little surprised, and quickly pulled up the MRI. I wanted to ask him the size - the "layman's terms" size. What are we dealing with?

Well, she's about the size of a grape. 2.5cm x 1cm. As noted before, she's blocking the drainage to the basal cisterns, so that's how we found her. There's no real rhyme or reason from whence she came - she's likely been there for years, growing slowly, until finally becoming symptomatic. Could be genetic, could be cell phones. It is *NOT* the head of the little Lego man that got jammed up my nose when I was 5.

So we're sitting there, talking about Sylvia (I told him the name) and the treatment. Basically, we go in and cut her out. But this is the moment...I mean, swear to God, I hope you all read this far, because this is THE moment - where I *KNEW* I had the right doctor working on me.

Because as we're discussing brain surgery, I glanced back at the monitor, and couldn't help but laugh. I mean, seriously, I laughed out loud. I lol'd. And I interrupted the doctor. And I said, "Sorry, just looking at the screen, and I realized my brain looks like a big goofy smiley face right now."

And what happens next is epic. Doc looks at it, laughs, and says, "Yeah, I see it. It's even got dimples. Okay, so Sylvia is that booger on the right side of the nose, and I've got to pick that booger."

LADIES AND GENTLEMEN. MY DOCTOR CALLED MY BRAIN TUMOR A BOOGER, AND SAID HE'S GOING TO PICK IT. BEST. NEUROSURGEON. EVER!!!!!!!!

He even encouraged me to take a picture of it. I should have taken multiple since the one I got is a little blurry. But here, meet Sylvia. (If you see the smiley face, she is the darkish mass on the right of the "nose.")

Goofy-assed looking brain. Guess we know it's mine.