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.
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| 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.
