Comments: 120 • Responses: 34  • Date: 

d0tamon18 karma

How does it actually feel when you know you have a tumor? Share the experience

CapnGnarly97 karma

It was pretty surreal for me. I found out on Friday, September 5, after having a seizure on my back deck. I was taking some stuff out to my car, as my family was headed out for the night. I went into my seizure, my wife called an ambulance, my neighbor cleared my back fence to come help, and the rest of the night was a blur in the emergency room.

I remember the docs wondering why I had a seizure, and they ordered a CT-Scan. Following that, there were some anomalies they wanted to see closer, so into the MRI I went. After the MRI, my first neurologist came in and calmly explained that there was a diffused mass in my front right lobe, approx 5 cubic cm. Swelling and inflammation around that is what caused the seizure, and I'd need to have the tumor removed quickly to avoid any more problems.

At first, it was too factual. Just information for me to parse and sort. One moment, I'm a 29-year-old husband, father of 3, full-time employee at a great place, and in the next moment, I'm a dude with a brain tumor that gonna have my head cut open.

I am a man of faith and family, and my focus very quickly turned to that for strength and stability. I have twins that well be 3 mid October, and a 5 month old baby boy. I'm very new to the dad job, but I love it and want to keep doing it forever. The thought that my kids could be robbed of one of the greatest joys I could give them sucked, and I knew that it would be by faith and family that I would pull out of this no problem.

We got in touch with a phenomenal tumor surgeon from UW Madison Health, who thankfully took my case. By Wednesday, I was on his office and had surgery booked for Monday morning. My prognosis has always been positive, and hearing people say "for having a brain tumor, this is the best case scenario" is still strange.

I went into a four-hour surgery on Monday morning, and following a post-op MRI, there appears to be no more tumor, no sign of stroke, just some swelling from the surgery. Km exhausted as all get out and look forward to drug-induced sleep, but take what I can get. My family and support group has astonished me throughout this last week, and I can't even begin to explain how much that helps.

If you know someone about to go through something like this, do ANYTHING no matter how small for them. The littlest things have been life changers this week, and we won't forget a moment.

d0tamon10 karma

INSPIRATION :') I'd do anything for someone in this situation

CapnGnarly29 karma

Buy me a beer sometime. Anything helps.

los_llaves1 karma


CapnGnarly1 karma

We haven't even started on the money side of it, but everything lines up for insurance to cover pretty much the whole thing.

sphven17 karma

Medical student here. I'm only in my second year so I still don't even know what I don't know, but I have a question or two! In your interactions with the doctors, did you feel like they had genuine concern for you as a patient? We constantly hear the criticism of doctors not spending enough time with their patients. Also, whenever I try to imagine giving a patient news like you had to hear I definitely feel nervous. I guess I'd like to know what did the doctors and nurses do, if anything, to help you feel secure in your treatment and care in such a difficult time?

CapnGnarly18 karma

My doctor was awesome. He went through the most common and scary types of brain tumors, and eliminated them from possibility one by one. Cancer some place else that metastasized in the brain? Nope, here's why. Membrane growth? Nope, here's why.

Astrocytoma or oliodendroglioma, possible, here's why.

Other options:

That took the shock and awe out of it right away.

CapnGnarly1 karma

I want to take a second to expand on this response a bit. I think it's important.

In another comment, I talked about positivity on my medical team. If someone wasn't able or willing to talk about good news or hope or positive sides of the situation, they didn't stay on my team. Having a lead surgeon tell me to my face "if I had nothing but this case all day, my job would be too easy" was a good thing to hear.

When you get news lie this, the very foundation your existence stands on gets shaken and tested to it's core. You're gonna find out what's gonna break, because it's gonna break. It can be your soul that cracks in half. If your medical staff can't support you, who the hell can? They're the only ones that know what it's like on the other side, and there's a good chance they've taken someone through before.

If there's anything I want you to take away in med school, I'd say learn to cut through the shit and tell the patient what's actually going on. People are smarter and hardier tab we give them credit for, and they need to start acting like that. Not everything is a damn death sentence, so find what there is to celebrate and go through back a beer for that cause. Then do it again. Now calm down, because you just chugged two beers and have a brain tumor, and that was probably a bad decision and you need to sit down.

mp02dc14 karma

Hey Capn. This is Mark(WREX). It's good to see you doing so well. A beer is coming to you for sure.
I always found "going under" to be such a weird thought. Did you have any dreams when you went under?

CapnGnarly14 karma

Nope. My anesthesiologist counted my breathes down, and took me through that hump very well. Most of my reservations were about going under a general with a breathing tube and the discomfort often associated with that experience. Turns out, it does suck, but the nurses have the best candy to get you past the rough stuff.

mp02dc6 karma

Thanks. I hope for a fast recovery. Here's some gold too.

CapnGnarly12 karma

That gold could've been a beer here in mad town, man...you and I both know that.

bender4212 karma

Did they let you keep the tumor?

Edit: Like, after they removed it?

CapnGnarly16 karma

Nope. Tumor got sent to pathology lab to figure out where it came from and of there is any more treatment needed following resective surgery (I.e., radiation or chemo)

simonsez3499 karma

how long until the result for that come back?

CapnGnarly12 karma

24-72 hours

lackingthecracker10 karma

How was your day today?

CapnGnarly26 karma

Today was a lot of work. The staff in the nuero ICU here at UW wanted me up and about pretty fast today. Food, walking, seeing family, rounds, etc.

I'm exhausted, but I've been hitting my recovery benchmarks like a boss. Every check box checked, I feel better and know I'm one step closer to being back on my couch or back in the office.

turkeyworm2 karma

I am so proud of you and so inspired. You seem to have well-ordered priorities and an unbelievably positive attitude. Your family is so lucky to have you and I wish you a long, peaceful, and happy future together.

CapnGnarly1 karma

We were all obviously a little in shock and scared. The questions were out there, will I be around for my twins' 3rd birthday. Will I ever go back to work? What if, what if, what if.

I touched on this a little in another comment, but my medical team was not shy about hope or positive feedback. If there was any upside or good news, they said it out loud right away, or they weren't staying on my team. You've got to surround yourself with that positivity or your soul will crack in half.

I_am_spongeworthy10 karma

Looking back on it, did you have any symptoms at all? Or was this just all out of the blue?

CapnGnarly16 karma

This hit me like a truck smacking into a deer in the middle of the Minnesota woods. My first neurologist double checked every single one of my responses to my nuero questions against my wife, because I think he was a bit incredulous.

I_am_spongeworthy5 karma

Ah, those Minnesota deer. I am well acquainted with them. The ones we have out here just don't compare (in size anyway). They still taste the same.

Anyway, good luck with your recovery. Sounds like you got pretty lucky, all things considered.

CapnGnarly30 karma

I think I did. One of the crazier parts of the story is the timing of the seizure. Two minutes earlier, I would have been in my family room putting shoes on my kids, freaking the he'll out of them with no help from my neighbor. Two minutes later, I would've been behind the wheel of a car with my entire family riding along for that adventure.

Luck (or a higher power of some kind) definitely pulled some strings for me this week.

phishroom8 karma

Has anyone really been far even as decided to use even go want to do look more like?

What I really mean is, hang on to your sense of humor, it will help speed your recovery. Best wishes. Hope I didn't scare the crap out of you.

Edit: http://knowyourmeme.com/memes/has-anyone-really-been-far-even-as-decided-to-use-even-go-want-to-do-look-more-like

CapnGnarly5 karma

I didn't quite make it through all of your words. Care to edit for clarity?

phishroom1 karma

Edited with link. I hope you were just trolling me back for good measure.

Also wanted to add, it's pretty inspiring to see you've gotten through this experience with such good results. I'll admit that some kind of brain tumor or injury is right up there on my list of greatest fears. Your success so far helps temper my fear, and it also helps put my run of the mill "problems" in perspective.

CapnGnarly1 karma

Glad I could help in ahh way. This is just another part of my story to use for help and hope in greater things in the world. If all that comes from this is the loss of a chunk of my brain, it's an awful waste of potential.

tumorboy7 karma

Is your tumor an oligodendroglioma?

Will you be requiring any additional treatment at this time?

I had one discovered in my frontal left lobe at 21, removed just after my 22nd birthday and received no additional treatment at that time. I'm now 34 and had oral chemo for 21 months and six weeks of radiation since then. Prognosis is good and I'm on a 6 month checkup schedule. I had Severe aphasia at the time, but much better by now.

turkeyworm2 karma

Wow yall are both so young and so brave and strong. I'm sorry you had to go through so much treatment and trauma and I'm really glad it has lead to a good prognosis. Do you mind distinguishing oral chemo from other chemo and which is the most common?

CapnGnarly1 karma

One of the trickier parts of chemo is getting past the blood brain barrier, however. The BBB is designed to be a one way trip for anything, if anything at all. Nothing in, nothing out. That's why it's often bad news to have a cancer somewhere else metastasize in the brain, it means that cancer can pass the BBB, which is dangerous. It's also why it's good news to have the tumor start in the brain: it probably won't go anywhere else. This is my case, and why surgical resection was the proper course instead of radiation or shrinkage.

CapnGnarly1 karma

ODG is my second most likely diagnosis. It's most likely an Astrocytoma, ODG #2, combo of astro and ODG #3, any other weird thing #4 and on.

CapnGnarly1 karma

Just received pathology results yesterday. Oligodendroglioma grade 2. Radiation is not off the table for another couple months, but seems like surgically I'm all good.

I still haven't seen my post op MRI, but my radiologist and med team have, and they say it looks clear of any more tumor or risk, so it'll just be how hardy the damn thing was that's the trouble now. Being only a grade 2, we aren't expecting too much of a fight, though.

JimsanityOSB6 karma

What is your favorite kind of bird?

CapnGnarly17 karma

I'm gonna go with red-winged-blackbirds.

CapnGnarly4 karma

Someone requested some photos. Here is a Caring Bridge site my wife set up that has almost the entire story in it.


BeatsWheats4 karma

Did you have headaches or anything leading up to the seizure?

CapnGnarly9 karma

I actually just had a long day at work. I ended up pulling a 14-hour shift by surprise, and didn't get much down time. When I got home, I was tired, laid own on the couch, and played with the baby for an hour or so before getting ready to go out. Nothing was abnormal feeling after that long shift, so there were no red flags until the seizure itself.

Purplesparklemonkey3 karma

Can you post some pics?

CapnGnarly6 karma

Of what?

Haephestus38 karma

Well... given the context of this thread...

Nudes. The people want nudes.

CapnGnarly28 karma

I'm quite attractive in my hospital gown...

mikemch163 karma

Were you awake for the surgery?

CapnGnarly5 karma

Nope. Out hard.

irishhighviking2 karma

Brain Injury survivor here. Do you attend a BI support group? We have some seizure/stroke victims in ours. Also, familiar with Phineas Gage? Apply?

CapnGnarly4 karma

I just read the curious case of Phineas Gage earlier this week. No application, my head want blown open by a tamping spike.

A really close family friend of mine had a m we menangioma removed by my surgeon five years ago, and he's been very helpful. His story differs vastly from mine, but it's still nice to be able to connect at the human level.

irishhighviking1 karma

Mr. Gage suffered personality changes following his head injury (as some of us do after such an event). Just curious if the seizure damaged anything important.

CapnGnarly3 karma

Doesn't seem to have. All of my nueros have come back clean, and post op is going great.

Brewrites2 karma

What is your expected recovery time and are there rehab components?

CapnGnarly3 karma

I was told 2-5 days in the hospital (end of day 2 right now), and off my feet at home and work for a while.

Time to edit this one:

Off work for 8-12 weeks. No lifting of any more than 10 pounds at a time. At least two short walks outside every day (like, down the street and back). Lots of fluids, make sure I poop, and sleep when I'm tired.

Hardest PT on earth, right?

seulbydoom2 karma

Have you noticed any differences after the surgery like smells or tastes or other? Also, best of luck for a quick recovery.

CapnGnarly5 karma

None so far, bacon is still amazing, and I still love a can of coke. If those two things were different, I'd be worrying about my wiring.

iheartfrontalbums3 karma

Auto correct or wiring problem? All the best to you on a speedy recovery and life filled with happiness with your wife and kids! Cheers!

CapnGnarly2 karma

Auto correct. Fixed it.

elizabeth115111 karma


CapnGnarly1 karma

Normally, no. I would get upper back aches and lots of neck and shoulder muscle tension, mostly from my job (average stressful and strenuous). Headaches were extremely uncommon for me, maybe once or twice per year, and they would often put me out for a day or night.

poptart2nd1 karma

Do you have any pics of the surgery?

CapnGnarly2 karma

None yet. I hope I get some. I'm normally a very curious and educated person, and sleeping through what was probably the most interesting thing to ever happen to me is killing me. I haven't had the chance to ask yet, but I'm strangely interested in the cutting device they used on my skull. Circular/reciprocal/depth router/abrasive wheel? I just wish I knew more about it.

Markgooseman1 karma

It's crazy to think that any one of us could have a brain tumor and not know about it. Glad to see you're doing good and recovering. Did the doctors tell you how long you had the tumor?

CapnGnarly1 karma

How long isn't important in determining anything other that satiating curiosity. Where it came from is the important part. It could have been new last week or five years ago, doesn't mean a world of difference now.

misshome1 karma

I hope your recover goes well! As luck would have it, the wife of a coworker is in a very similar situation to yours. I don't know much beyond that she has a mass, probably benign, and they're taking it out tomorrow, I think. At work, we're pondering what to do for her. The first thought of course was food for the family--they have two boys--but I think the church will have that covered. Our second idea was to get her a gift certificate at a salon, since we're assuming that part of her head will have to be shaved for the operation. Beyond that, do you have any suggestions on how we can help the family? Or others when we have friends in this situation?

CapnGnarly5 karma

Food for their kids will go a long way. They've got enough to worry about to keep strong together, it's gonna be hard to feel like a solid parent for a bit. Knowing your kids are eating well makes you feel better.

lula2488-2 karma

Hello CapnGnarly! Your post has been removed because you have not provided adequate proof within a reasonable amount of time. Please see the /r/IAmA sidebar for posting guidelines. Thank you!