Recovery

There's probably a 12 year old post somewhere in this blog about recovering from surgery.

Recovery is not linear. It does not follow a clean, specific trajectory. It does not hit milestonesright when they're due.

Yesterday was a good day; I got up, came downstairs and sat on the couch to watch football. I held and played with Inferno, our leopard gecko. I got out of the house and walked to that mailbox.

I'm trying to be cognizant to NOT overdo it. Today I got up, came downstairs and made my own cup of coffee. "Played" a game of Spite and Malice (card game)(in quotes because I got WHUPPED!). Sat on the couch, but got up occasionally. Ordered my books for next semester. 

Now 5:15p and I'm totally wiped out. I've got NOTHING left. "It's a marathon, not a sprint" and all those other adages and clichés. And right now I am hitting a WALL. 

I, for one, welcome our new robot overlords

 I know that there is a LOT of debate about the use and resources required for AI. And I was not an "early adopter" - when Chat GPT first came out I thought it was a useless little trinket and people were making WAY to big of a deal about it.

But I did start using it, gingerly at first, and I am coming around. One of the first things I ever did with it was ask it to write a "thank you letter" for the 150+ people that attended a workshop I put on. After I sent it my boss complimented me on a "really excellent" letter. I told him the truth (about a year later).

Since then, I have used it as a tool for more and more tasks. In law school we have had it smashed into our skulls NOT to use it - or, at least, to use it with GREAT caution. Real lawyers are losing their law license for having AI write briefs with hallucinating references.

That said, however... I uploaded the class syllabi into Chat GPT, and asked it to help me study for finals. It created a "boot camp" for Con Law - based on it being an open-note test, what notes I needed, and what I needed to have memorized, know where to find, my own decision-making process for "strict scrutiny," etc.

This week, I'm going to the library and doing another boot camp - this time for Torts, and knowing that this final is CLOSED note. It has me writing things down from memory, pages to look at before bed, etc. It's extremely helpful.

But none of that has anything to do with the upcoming surgery. And for that, I turn to a different chat. Did you know that the AI bots learn as they go, and you can tell them to switch their "thought" process from "Law School Tutor" to "Oh God I'm panicking about brain surgery" - ?

I know that I'm talking to a computer. I know that it has no sympathy to offer. But the tone and voice is still reassuring. If nothing else, it's nice to know that, somewhere, a human taught it to pretend to be sympathetic. Here's an example:

ADHD FTW

A little less than a year ago I got tested for ADHD. The result was a diagnosis I've never heard of - I've got ADHD but it's "in remission." As in, I've had it for so long throughout my entire life, I've successfully built up my own ways of "dealing with it" that it's no longer a major impact. I don't know that I agree with that, but whatever.

I joked with my provider that I frequently achieve "task accomplishment through procrastination." Apparently, I'm not the first to discover this theory.

Right now, though, it's not so much "task accomplishment" as it is "maintain sanity through distraction."

OH MY GOD, I'VE GOT BRAIN SURGERY ON MONDAY!!!

So what, dummy? You've got your Torts final on Sunday.

OH MY GOD, I'VE GOT MY TORTS FINAL ON SUNDAY!!!

So what, dummy? You've got NO JOB and need to work on your job search and applications.

OH MY GOD, I'VE GOT NO JOB!!!

So what, dummy? You've got brain surgery on Monday, get through that first. Not like you're going to be going in for a job interview on Tuesday while you're digesting brain goo.

Ketchup or mustard on an elephant sandwich?

 I've been told that I can be very verbose and long-winded in my writing. Very recently, I sent an email trying to "fix" that problem, and one of the people who always says that replied that it wasn't a complaint, it's just how I am and she recognizes emails from me by being so long.

So, TL;DR (or BLUF): I'm having brain surgery again. In 5 days.

A year and a half ago I mentioned that "something" was back with Sylvia. The end result of that was chopping my serial MRIs down to once every 6 months instead of every 2 years. So from May 24, I then had one in December '24. The earliest we could schedule after that was August '24, so it was more like 8 months instead of 6.

There was something wrong in August. Sylvia had doubled in size. But "doubling" is a relative term, since 2 times virtually nothing is still virtually nothing. 12 years ago, she was the size of a grape. December of '24 the remnants were the size of a grain of rice. By August, it was about the size of TWO grains of rice. So that's really not much.

My case was presented to the Brain Tumor Board at UCHealth Anschutz. Everyone there agreed with a treatment plan of continued observation and monitoring, while doubling the frequency of MRIs to every 3 months. Something else that was noted in August was that my lateral ventricles were enlarging. In addition to the more frequent monitoring, I started a "headache log." It's had only a few entries, some related to sinus pressure from a cold, but there were some headaches worth noting.

From August, I had my most recent MRI on November 11. Veteran's Day, yay. I went in the tube at UCHealth again and got my scan on. A nice thing about UCHealth is that they typically read and share the results the same day - by that evening, I had the images and the radiology report. "Mass appears stable," blah blah blah. But they didn't say or mention anything about my ventricles, it was all focused on Sylvia. When I looked at the images, I could see that they were even more enlarged than they had been 3 months ago. I'm not a radiologist, but I look at this, and I can see that something ain't right.

(MRIs are shown in mirror image. For all the millions of brain cells and IQ points that went into designing a machine that uses magnets to detect water in your body and create an image, not ONE FRIGGIN' PERSON ON THE TEAM thought to say, "Hey, since the magnets are giving us a reverse image, then in all this image processing software, should we flip it back to normal?" Thus, the left side of the picture is the right side of my head. Up at the top you can see the brighter area that is the titanium plate in my forehead.)

12 years ago, the first thing they did for me was an ETV - endoscopic third ventriculostomy. They poked a hole in the ventricles to allow the brain goo (CSF) to drain. Now, we've reached the point where that hole as likely healed with scar tissue. It was always a risk, but never a guarantee.

I had my appointment on Thursday, the 13th. The PA came in and talked all about how Sylvia was still stable, a little more growth but not much since August, etc. But I virtually cut her off to ask about the ventricles. Here, she hedged - "Yes, they are a little more enlarged, but it's something that can probably wait a while. Eventually we may have to do another surgery but that's probably in the future." She then left, and about 5 minutes later the surgeon came in.

"So, I want to get you scheduled for surgery..."

Huh? What? "How soon?!"

"Nothing too urgent, it can probably wait until the week after Thanksgiving."

Three weeks away. That sounded pretty urgent to me.

In times like this many of us have dumb concerns. Mine rested on law school finals. Yeah, I'm in law school at DU, doing my second year in the part-time program. I had one final on the 7th, two more coming up on the 13th, and 14th. So, we pushed surgery by two weeks.

Well, what is the surgery? There are two options. The first is to do another ETV - it's more invasive to the brain tissue, and it could scar over again. The doc's preferred surgery, and what we're going with, is a ventriculoperitoneal (VP) shunt.

Ventriculo = coming from my brain ventricles

peritoneal = peritoneal sac, the big huge thing in the abdomen housing most of your guts

shunt = shunt, there's going to be a tube running under my skin, in my body, from my brain to my gut. It'll have a one-way valve to make sure nothing goes into my brain, and it will help equalize the pressure in my noggin to where it should be.

I asked about this, and it does not connect to a specific organ like my stomach, intestines, kidneys, or anything. I'm just going to have brain goo going into my abdomen in general, and it gets absorbed there. Your peritoneum just acts like a sponge - and apparently, that includes brain goo.

I have said before that Sylvia is my own personal Sword of Damocles. And it would seem that the horse hair has finally snapped. And the timing couldn't possibly be worse. On November 3rd - ten days BEFORE the news of needing surgery, I was laid off. Weld County has a budget shortfall, and using "last in, first out" my last paycheck comes on December 15th.

Fortunately, ALL of this is covered, 100%, by the VA. Not a dime out of pocket. But, how am I supposed to apply for jobs right now? I'm not protected - they can choose to not hire me if I'm not able to start on the date they want. Hell, an application put in last week might come back with a, "You look like a great candidate, can we interview you on December 16?"

Sorry, can't make it that day. I'm too busy digesting my brain goo.

I'm pretty sure I've put it in here somewhere before, but my Dad often reminds me: "How do you eat an elephant sandwich? One bite at a time."

And that's where I am. One bite at a time.

Study for exams.

Take exams.

Surgery.

Digest brain goo.

Figure out next semester. Figure out job.

It's what I have to do. There's no alternative. The only option I have is to figure out if ketchup goes well on an elephant sandwich. Or should I try yellow mustard?

5,256,000 minutes, plus a few leap days and a month or three...

 If you were expecting an update at the 10 year mark, you were right. It was going to happen. But then the worst irony of all time reared its head.

I wrote years ago about not really knowing what to call the "anniversary" - symptom onset, diagnosis, surgery #1, or surgery #2. But things had been going well, and all the dates fall within a two week window, so it doesn't really matter, right?

Well, let's play catch-up, first of all. I'm no longer in the Coast Guard. I was medically retired in June 2021 after 15 years, 10 months and change. I call it 16 years. Medical retirement was a result of Sylvia and her side effects, and with a 90% disability rating and NOT having to go to Kodiak, I'll take it.

I got a job with Titan Machinery, moved the family to Fort Collins, Colorado, and plugged along. Titan wasn't quite all it was cracked up to be, too much travel, and I saw a job posting with the neighboring county as a "Training and Exercise Coordinator." Sounded interesting, was paying more, and the travel was way less. I applied, and for the past 14 months have been working for the Weld County Office of Emergency Management. I really quite like this new job, working with first responders, government, volunteer organizations, private industry...it's neat, interesting stuff. But this post isn't about my new job. But it does relate.

Back in January I went to Colorado Springs for a week-long class, Type III Logistics Chief within the ICS framework. It was wicked cold that week, but it was a great class and I learned a lot. Class wrapped up on Friday, the 19th, and I drove home.

Got back to FoCo (that's Fort Collins if you aren't in the know), and checked the mail. Laura was out and about, no big deal. Envelope from the VA medical clinic. As I'd just turned 45, I was expecting notification of my referral to go get the ol' "roto-rooter treatment" ifyaknowwhatImean.

Opened the envelope. Without any warning, everything seemed to come crashing down. Because January 19th was the "anniversary" of the date which I got my diagnosis. 10 years to the DAY from when I first heard the words "brain tumor," I got a radiology report from my normal, bog-standard, regular serial monitoring that my MRI from January 2 had a "significant abnormality."

No phone call, no doctor's appointment, just a letter in the mail with the words "Significant abnormality."

With no other information, WTF are you really supposed to do?

I pulled out my phone and scrolled through contacts. I had nothing to tell Laura, and didn't want to panic her unnecessarily. Given the time of day and the implications of what it could mean, there was only one name in my contacts list I could call.

So I dumped my panic and worry and fears on my sister, Leslie. She answered, we talked, and while it didn't change a damn thing in terms of what was going on, she was a calming effect. Started to see through the fog of panic and into the reality.

Next call was to my cousin, Megan (an ophthalmic surgeon) and her husband, Bill - a radiologist. This was a VERY helpful call, as Bill read the radiology report and was able to better interpret it for me. And by "interpret," he wasn't looking at the images, but he could read between the lines. To say that there was a lot of uncertainty, some "bet hedging," and while there WAS something that the radiologist saw, it was very inconclusive.

The following Friday, the 26th, I had an appointment with my VA PCM. He was (and is) awesome, in that, he knows his role. He's WAY out of his depth and training with brain tumors, but his job is to be my advocate as a primary care manager. If anything gets in my way, anyone hedges on "does he really need..." Doc steps in and says, "Yes, schedule him now, it is medically required."

 He had already called the radiologist who did the report, and got the same verbal as what Bill said - something's going on, better imaging is required, and let's reduce the serial monitoring from every two years back to every 3-6 months. Doc already put in referrals out to neuro-oncology, neurology, and neurosurgery. Somewhat disconcerting but at the same time comforting was that he put a "RUSH" order on it. The VA called me on Saturday to schedule the appointment.

I also looped in my old neuro-oncologist, Dr. Theeler from Walter Reed. No longer a Major, he's now a Colonel and the Chair of the Department of Neurology at Uniformed Services University School of Medicine. He remembered me immediately, offered to work with the locals, and gave resources of how to get the NIH involved with consulting for free as part of the "Rare Tumor" investigation group.

First up was supposed to be neurology, but they punted immediately that there was nothing for them to do without neurosurgery getting in their opinion first.

The sideways heart-shaped thing is the new growth, and OH MY GOD THERE'S A GIANT RED ARROW IN MY HEAD!!!!

I had my consult with neurosurgery in Denver and it went well. He was able to answer a lot of questions, and provide more insight. He showed me the image of what was seen that was concerning. Definitely no need for surgery right now, we've only just spotted the first of anything new. It's still stupid small and there's no point poking new holes in my brain.

That really brought the anxiety down a lot. I had my 3 month MRI at the beginning of April, and with those images in hand went to see the neuro-oncologist. That was earlier this week, and Laura got to join me.

Once again, we got really good information from another MD/PhD. The original pathology, "rosette-forming glioneuronal tumor" was probably very accurate, as it's based on a histological examination (what the stupid thing LOOKS like under a microscope, "rosette-forming"). The "DNET" aspect was probably tossed in because it's one of the most common types of a Grade I neoplasm. He mentioned that, thanks to technology and research, in the past ten years they've added a huge number of tests and things they could run - one entire new mutation that wasn't even known about back then.

His advice was "keep living your life." No need to quit my job, run off to Tahiti or withdraw from law school.

WAIT, WHAT?! LAW SCHOOL?!!!

Oh yeah, by the way, I'm starting law school in August. A part-time program in Denver, 8 weekends per semester, and taking 4 years instead of 3. That's a longer story for a different blog, but it looks like I might be a 49 year-old first year lawyer.

Life is good. Zombie Sylvia might be trying to make a comeback, but we're ready and prepared. Shaun, Ed, and Liz are warming up to "Don't Stop Me Now," and I would like to have a pint at the Winchester.

Dear Mr. President and Madam Vice-President...

 Dear Mr. President and Madam Vice-President -

Congratulations! Let us start there, my sincere heartfelt congratulations to you both on your successful campaign, election, and inaugurations today.

You don't know me, there's no reason you would. I'm just one of the 328 million people you now lead and represent. Moreover, Mr. President, you are now my Commander-in-Chief as I am one of the roughly 42,000 Coasties under your command. But today, January 20th, you have given me a new reason to look forward to this date in the future, and to not be afraid of it.

I say "to not be afraid of it" because for the past 6 years, this has been part of an anniversary I dread. "Part of" because it's part of a larger event, one spread out over the course of 4 weeks (or 7 years and counting...) so it never really goes away. Because this time 7 years ago, I was lying in a hospital bed at Walter Reed National Military Medical Center, awaiting brain surgery.

January 17th the symptoms started. January 19th I told my wife, then 6 months pregnant with our second son, and she dropped me off at the ER at WRNMMC. January 20th, 7 years ago today, a doctor told me "You have a brain tumor."

I know that you are all too aware of just how frightening those words are. A year after me, when news of your son's diagnosis came out, I listened and hung on every word. I was in the all-too-unfortunate position of recognizing what "glioblastoma" actually meant. I knew that Beau was being treated at WRNMMC, and very quite likely by many of the same doctors who treated me.

But his outcome would not be the same as mine. And that is tragic, and 6 years later, I am sorry for your loss. A father of 3 little kids, I cannot imagine the pain.

In the 7 years since then, we have added to our family. Nicholas was born 3 months later. And then 3 years later, Madeleine came into the world.

So it is on Madeleine's behalf, Madam Vice-President, that I write to you. Because while a lot of other dates around this time of year will always be associated with that terrifying time of my life - the onset of symptoms, the diagnosis, the two brain surgeries I had to endure - I can now take the 20th off that list.

Because now, today, January 20th will be remembered not for the words a doctor said to me. January 20th is the date I looked down at my daughter, pointed to the TV screen, and said, "See Madeleine? You can grow up to be Vice-President, too. Or President, if you want that job instead."

Good luck in your coming term. We have a lot of challenges to face, but I trust in you, and the American people, that we will see them them through. Better days are ahead. 7 years ago I was able to beat Sylvia. We can do this.

Sincerely,

Benjamin M. Atkins

Take Down Notice

This picture has been stolen from me.

But not in the way that I can issue a DMCA "take down" notice. It's not being used without permission in an advertisement. Hell, it's not even my picture, it's Amanda's.

This picture has been stolen from me by what it now represents. What it now means. And it shouldn't. This is an awesome, amazing, sweet picture of two kids having fun. Lots was talked about in the few days after it went up, of Teddy going on his first date, taking his girlfriend for a ride. How Harper was clearly into bikers. This should be an awesome picture of two kids, and a reminder of good friends that can be counted on in an instant.

But it's not that. Not to me, as much as I want it to be.

This is from when Jason and Amanda (and Harper) watched after Teddy for us unexpectedly one evening. While Laura was pregnant with Nicholas and wasn't feeling well.

While this picture was being taken, we were sitting in the OB clinic at Walter Reed. Laura was dehydrated is all it turned out to be, so she got a bag of fluid.

While this picture was being taken, and while Laura was getting an IV, is when I started having my first acute symptoms of Sylvia. 3 years later and I still remember it as clear as yesterday, sitting in the waiting room and realizing I was seeing double, that there were two tulips where there should only be one.

And passing it off as nothing, as stress, as a headache, as something I was able to control. After all, I was able to drive us home, pick up Teddy, and all was well, right?

---

I haven't updated in almost exactly a year. There have been some happenings, but nothing too significant. I got a new doc down at Portsmouth. I *REALLY* like this one. Don't get me wrong, I liked the last one, too. But, Laura wasn't so hip to him. He was an older guy, rather cocky, and rubbed her the wrong way. I can see why. [Edit to add after she's read this: "He talked about his golf game!" - Laura] 

New doc is young, and very engaged in my care. First meeting she admitted she had read my case, but didn't get all of it, and wanted my story. We talked about the whole case, from, well, three years ago today up to today.

Whereas the last guy told me that my MRIs had been reviewed from start to finish, she did it with me. "Have you seen your MRIs?"
"No. Well, sort of. I've got a copy of them all, I've looked at them, but I have no idea what I'm looking at."
"Oh, gosh, okay. Come here."
And we went to the radiology room thing, with, literally, an entire wall full of LED computer monitors. She brought up MRIs from pre-surgery, post-surgery, 6 months later, and today. Scrolled through them. Pointed out changes. Pointed out what we give a shit about. What looks good. What needs monitoring, but hasn't changed. A full review, with me there, asking questions, getting straight answers.

The last guy said "Get an MRI every 6 months, no need to come in unless we call you." She said "Get an MRI every 6 months, and come see me. You had a brain tumor, I want to get eyes on you and talk just to make sure everything's going alright."

---

So, no, I don't want to take down the photo. It might be a harbinger of melancholy (them's some big words), but it does more than that. Yeah, it reminds me of what happened. But it also reminds me how lucky I am. Not just the "lucky to be alive" part, but also the "lucky to have such good friends" aspect.

Life in Virginia is going well. We're doing great, work is good, and things are falling into place. We've bought a house (finally!) and we love it here. For what few dear readers there are left of this blog, I hope all y'all are doing well, and wish you the best. Don't forget you've got a place to stay if you ever want to visit Historic Colonial Williamsburg, Jamestown, Yorktown, and the area. Take care,

Ben