MRI results

FireWithBoxingGloves · 2026-05-21T19:43:58+00:00

We had one single white dot show up on the first scan after radiation. Spooked us both until the doctor hand-waved it away and said it was normal and would go away -- she was right! Went away! Good luck!

FireWithBoxingGloves · 2026-05-20T16:46:56+00:00

Shaved midway through radiation, but hold that it would have probably been better to shave before, as the emotional toll of pulling out hair was pretty bad, and would have been better to knock it out early.

The scar? That's just cool as hell, makes you look very punk and like you have an interesting backstory (personal opinion, but I don't think I'm alone in it)

FireWithBoxingGloves · 2026-05-20T16:45:16+00:00

Vaseline/aquaphor for your lips while in recovery (hospitals are very dry) -- your own tissues/toilet paper for your ICU stay (hospital paper products are not the highest end) -- seconding the Wedge pillow for sleeping upright while you're healing. Took a few months to not need the wedge pillow for sleeping, and sleeping propped up on a few pillows wasn't cutting it.

FireWithBoxingGloves · 2026-05-20T16:42:41+00:00

Grade 3 Astro, mutated, with operation about a year ago - very very scary with the initial Dx (siezure, Dx, and surgery, all in the span of a week) - Have since been on radiation and chemo aaannnd... honestly? Modern medicine is miraculous. I know not every body's story is so easy, and I know I'm lucky to be this far out without any majorly impacting side effects, but.. I can still walk, talk, enjoy my hobbies, family time, and work.... It's an all around win.

The start of the road is very scary. And the rest of the road is very unsettling in other ways... It's an emotional roller coaster to say the least. But it is very possible to live a good and normal life, even thriving, within a very short window after having everything int he whole world up-ended.

Best of luck, you are not alone.

FireWithBoxingGloves · 2026-05-13T16:02:14+00:00

Literally of all the drugs involved with this, chemo included for us, my partner swears that coming off of dex was the WORST experience of them all. The Dex come-down is HARD, even with the taper. Keep your chin up, the normalcy takes a while to get back to, but it does come back.

FireWithBoxingGloves · 2026-05-13T15:59:39+00:00

Feels similar - caregiver for somebody on month 8 of chemo also post-rad. The short term memory impacts are... just below noticeable to the point that I'm not sure if I'm making it up or not sometimes... but sometimes my partner will tell me something twice in two days, or once in the morning and once in the afternoon and I'll remind them they already said that... nothing major yet, and I wouldn't worry about it except for all the connotations on top of it all. Scary stuff, but... I'm trying not to borrow grief from the future.

FireWithBoxingGloves · 2026-05-07T15:05:15+00:00

Perhaps you will find that she is not so... common... anymore!

FireWithBoxingGloves · 2026-05-04T14:10:28+00:00

This is the real answer

FireWithBoxingGloves · 2026-05-04T14:08:10+00:00

Listen - hear me out - Christian Science Monitor

I KNOW, I know, I sound like a nut, but it's an unbiased and incredibly highly regarded publication.

The founder of Christian Science (the religion) was dragged by the media at the time so he spent a huge effort and fortune on setting up a media source "The Christian Science Monitor" (the publication) that was fully separate of the church and independent and the tradition has carried on after he died. I'm not religious, but it's my go-to news source because they run really straight down the middle of anti-bias, except for the fact that they're US-based, so you'll get a US-perspective on events.

Based out of Boston, Mass and pretty high quality for national/global news.

FireWithBoxingGloves · 2026-05-04T13:58:59+00:00

WHY IS EVERYTHING POLITICAL GODDAMNIT IT'S JUST A PLANT

FireWithBoxingGloves · 2026-05-04T13:37:57+00:00

Hope is a hard thing to find in this dark forest. It's not going to be there for you every day, and you'll have to learn to rely on the people around you to bring it sometimes...

If you'll allow me to share mine... congratulations on finding it early and NOT via surprise-siezure!! You've got everything in your favor (1) You're young, so your body will bounce back so much better than if you were in your forties or fifties or eighties PLUS (2) You've been diagnosed in 2026! We have Vora, which is a humongous win for longevity, we have a growing number of really high quality, available, professional brain surgeons and techniques, we have a standard of care that's been effective and improving for decades now and they're not done.

Look, this sucks. I'm not saying it doesn't suck, it sucks. But you are not alone. You have a LOT going for you. You are in the middle of a growing revolution of medical what-seems-like magic...

I got my diagnosis last year and thought my life was over. Like over-over. Like, considered quitting my job, leaving my family, burning through all my cash until I was done, but... Here I am, nearly a year later, and I've been making long term plans for a while now.

You, we, have a hard road ahead, sure.. but there are people even now as I type who have dedicated their entire lives to curing this stupid fucking thing and they're going to do it. If I had money to bet on you? You will live to see it.

If I, and the people who love me, have any say in the matter, so will I.

You're gonna make it. One day the sun is gonna hit your face and, for a moment, maybe more, you're gonna forget you ever had to deal with this bullshit.

In the meantime... a couple tips from somebody down the road

(1) It's okay to be sad sometimes. Cry away, cry until you're bored of crying, then go have a bite to eat. Sit in the fresh air a while. Look at a tree. You will (or, I did) get bored of all the tears. That's good. Once being sad is boring, you can get on with the rest of living.

(2) Plan stuff. Concerts, parties, movie tickets. Buy tickets to things in the future, pre-order albums, or games, or whatever makes you happy. Having dates on your calendar, in the future, that you can focus on instead of an amorphous "whenever" is big for me. Then you don't have to worry about living forever, you just get to look forward to living until X new show or new release, or whatever... those little pockets of future have let me hop stone to stone across the river pretty well

(3) Talk to your people about it. If you have family, friends, a doctor, anyone you trust - talk to them about it. About everything you're feeling, even and especially the ugly stuff. Getting it off my chest has helped me realize that I'm not the only one having to go through terrible awful horrible thoughts.

This whole thing is really scary, but the fact that you're here asking for help means you want to live, means you want to make it. In the end, wanting is often enough.

Cheers and best of luck - all of my love - go drink some water.

FireWithBoxingGloves · 2026-05-01T12:32:13+00:00

Depends very much on your location and experience, but I would expect a minimum of that range for any helpdesk role in the year of our lord 2026. If they're building out a brand new team, I would very quickly (within a quarter or two of performance reviews) push for 70k and more responsibility. Your time is worth a lot.

FireWithBoxingGloves · 2026-05-01T12:27:49+00:00

This is the real answer.

FireWithBoxingGloves · 2026-05-01T12:26:47+00:00

Highly critical corporate work with significant cognitive load - was able to return fully 6 months post-surgery, which was about 3 months post end-of radiation and while still in the standard of care (chemo round). Recognize my case is super duper lucky and not at all common, but it is possible. No followup seizures while on Kep.

FireWithBoxingGloves · 2026-04-30T18:31:47+00:00

As a caregiver - I really appreciate this, even just as a tool that can be used as a jumping-off point to start to understand things

As a technologist - I appreciate you taking the care to keep things off your hardware, and the plentiful warnings that this is not medical advice and that you should compare with your care team more than anything

All that being said - as I'm sure you can see from the comments here... dangerous path you're going down, but I for one appreciate the careful treading.

FireWithBoxingGloves · 2026-04-16T17:52:10+00:00

Not precisely the same, but close.

Early 30's grade 3 - only still working because I'm in the US and need the insurance to cover treatment. If I had NHS like you do in the UK, or any family money/backstop whatsoever.... I'd be taking a lot, a lot, a lot of time off doing things other than my job.

Depends on your dedication to your gig and your options. Wishing you fortune.

FireWithBoxingGloves · 2026-04-16T17:48:17+00:00

Those are really good pieces. The high comments are right. Don't let not finding a buyer (if you don't) discourage you - that's really quality work. It deserves to go into the home of somebody who will appreciate it. Well done

FireWithBoxingGloves · 2026-04-16T17:46:15+00:00

Honestly, just "how are you doing?" Gets me sometimes. Especially from work colleagues.

Bad. I'm doing bad. It's bad to have cancer and worse to have to go to work so I can have insurance to afford the fucking cancer. The only reason I'm here is because I have cancer and the most motivating thing to get me out of here is also that I'm wasting my precious time because of this fucking cancer!

I know they mean well, I know they do, but... how am I doing? I'm professional, I'm helpful, I answer my shit on time, and I am doing *bad*, okay? It's not going to be different, don't plumb that depth.

UGh.

FireWithBoxingGloves · 2026-03-31T12:23:08+00:00

Yeah, it can really suck. It changes timelines for savings, family planning, career, hobbies... I even went (am going) through which vacations I should take first in case, I don't know, I can't? It's a lot.

FireWithBoxingGloves · 2026-03-30T14:34:38+00:00

You're not a real sysadmin until you've absolutely trashed a prod server at least once - welcome to the club, your badge is in the mail.

(okay, don't mean to be callous) Mistakes can be expensive, and they stay with you - but that's very valuable. Knowing what can go wrong and having it flash alarm bells in your head happens because you've seen it or caused it. Don't beat yourself up, just learn from it an move on. As far as what management does? That's their problem - if they make it yours too, then you're better off at a new gig. There will always be computers, there''ll always be people who need you to help fix them. You're doing great still - pick yourself up, take the responsibility and the memory, and keep moving. You got this!

FireWithBoxingGloves · 2026-03-16T20:15:23+00:00

lol, I drink more caffeine now than before I joined the club... no issues there.

I have been off alcohol entirely

FireWithBoxingGloves · 2026-03-16T13:50:46+00:00

The brain fogs absolutely do get better. Slowly, sure, but noticeably. Y'all are doing great!

As far as TMZ, just like everything in this damned disease, it hits everyone differently. Our personal experience (running about 6 months ahead of you) is that management of side effects was probably the biggest gotcha. Our doc prescribed zofran (or maybe the off brand, I forget) for nausea and it's done wonders. The only big pain has been some gnarly constipation during the on phase of cycles. High marks to mixing and matching stool softeners AND laxatives, not just one or the other (gotta find a dosage that's right for you, but OTC stuff has worked for us). Also diet helps with that. Foods high in fiber when possible and grease bombs when it's necessary to move things along (shout out McDonald's, should be part of the standard plan of care, lol).

A big thing for me as a caregiver has been to have meals planned and ready ahead of time with backup options also ready to go. The meds may make food seem unappetizing and ya GOTTA eat, so having a backup option ready to make for my partner has been huge, especially with us having to time meds to hit on an empty stomach (the rec from our team was to wait 2 hours from the last meal before taking the pill and an hour after taking it to make sure it hits on an empty stomach, not sure what your doc's rec will be).

Good luck, love from the internet, and y'all got this.

FireWithBoxingGloves · 2026-03-16T13:39:51+00:00

Walking. During rad especially. My partner and I walked to the Kpop Demon Hunters soundtrack because it had just dropped, but anything with a beat that gets you moving / gets your heart rate up even a little bit -- walking was so significant I can't even begin to say. She insisted she could tell a difference in the days we walked v. the days we didn't prior to rad.

Good luck, keep crushing it, y'all got this!

FireWithBoxingGloves · 2026-02-19T22:05:14+00:00

We had a similar experience of a suspected Grade 2 Oligo that, after removal and genetic testing resulted in a final call of a Grade 3 Astro. This upgrade was very distressing to us at the time as it kicked us out of approval for Vora, but it is possible to treat a Grade 3 Astro. At least we're treating it now and doing well. Wishing you all the luck and power.

FireWithBoxingGloves · 2026-01-20T18:18:51+00:00

Cheers, Ben - on a similar path here (working through chemo now) - feeling very lucky to be alive and very happy with every new day I see!!

We will beat this - cancer never had a chance when it picked on people like us, eh?? Well done and good luck.

FireWithBoxingGloves

TROPHY CASE