Prayers for Dr. Naysay

ATKM said:
Quick context update

Original diagnois was wrong (hodgkins lymphoma)

They attempted a second biopsy (needle in my shoulder with an assist from whacking on it with a mallet to break through some bone)

The sample recovered from that was insufficient for a complete diagnosis so now they're going to perform "invasive surgery" on my neck to remove an entire lymph node so they can actually diagnose what type of lymphoma I actually have.

So we're not even at the stage of fighting the cancer. We haven't even identified it yet.

Gooooooood times.

Thank you for the kind words and thoughts. Sincerely.
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You got this buddy. I am going on my third surgery. Went from panic stricken level 10 to, ah, just get it over with. I cannot imagine the toll taken on your ever fragile psyche(that's a tease meant in love). But seriously, surround yourself with positivity and hope for the best while putting your faith in the folks who should know what they are doing. Feel the love from this thread Doc. It's real. You always played the curmudgeon, but it turns out you are a pretty decent dude. The world is too small already Brother. We need folks like you.
 
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ATKM said:
Quick context update

Original diagnois was wrong (hodgkins lymphoma)

They attempted a second biopsy (needle in my shoulder with an assist from whacking on it with a mallet to break through some bone)

The sample recovered from that was insufficient for a complete diagnosis so now they're going to perform "invasive surgery" on my neck to remove an entire lymph node so they can actually diagnose what type of lymphoma I actually have.

So we're not even at the stage of fighting the cancer. We haven't even identified it yet.

Gooooooood times.

Thank you for the kind words and thoughts. Sincerely.
Click to expand...

I in 7 months I've had 4 lumbal punctures, many machine screens and then brain biopsy in the end (after they exhausted all other options) last year in order to get a diagnosis for my brain going wonky (sudden hemmorrhage one morning) at 34, which is a bit too soon for a brain going wonky. Then chemo for almost a year in 1 month and then 2 month intervals.

It's not cancer but autoimmune central nervous system vasculitis. Extremely rare. Woohoo, jackpot? Better than cancer? I don't know, the doctors don't know, nobody knows. Definitely better than certain types of cancer, but the uncertainty is difficult to deal with.

I'm fine now, the chemo+other support medication seems to be working (knock on wood) and I hope this "fineness" will last for as long as possible though I will never ever be "care free" about my health again and will probably be on medication for the foreseeable future, so if there's a WW3 I'm likely f*****d.

But if I was ever told I would be able to get through all this mentally, I'd laugh at whoever's face and say "yeah right, I'd rather die". It's amazing how adaptable we can be despite our certainty that we are unable to.


I've avoided "nosing" into this thread since I really hate being the "oh, yes, I'm also in a sh*tty situation", as I've personally found that people sharing their own horror stories with me didn't make me feel any better, only hope that this will be "fixed" made me feel better. But alas, I gave in and shared my story as I know people are different and maybe it gives you just a little bit of hope/ability to cope. So you and everyone else fighting these kind of nasty diseases - stay strong and keep hoping! Best wishes to you.
 
ATKM said:
Quick context update

Original diagnois was wrong (hodgkins lymphoma)

They attempted a second biopsy (needle in my shoulder with an assist from whacking on it with a mallet to break through some bone)

The sample recovered from that was insufficient for a complete diagnosis so now they're going to perform "invasive surgery" on my neck to remove an entire lymph node so they can actually diagnose what type of lymphoma I actually have.

So we're not even at the stage of fighting the cancer. We haven't even identified it yet.

Gooooooood times.

Thank you for the kind words and thoughts. Sincerely.
Click to expand...

So sorry life has thrown this terrible thing your way. I hope they can get it figured and get you going on a proper treatment as soon as possible. Best wishes for you.
 
Bollocks said:
I know people are different and maybe it gives you just a little bit of hope/ability to cope. So you and everyone else fighting these kind of nasty diseases - stay strong and keep hoping! Best wishes to you.
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It's funny... hope isn't a currency I trade in.

I've been having an ongoing argument with a close friend of mine for decades about wether or not hope is a dangerous or crucially important element. I lean towards dangerous. My interpretation of the Pandora's Box story is that hope being the last remaining "sin" left in the box is that it IS dangerous.

However... perspective is something that I do believe in and so when I read stories (like in this thread and that people have emailed me) about their own horror stories it is a nice reminder that while I am annoyed and exhausted and tired of the ever growing mountain of prescription drugs on my desk... that in the grand scheme of things I am and will be ok.

Perhaps that's just another version of hope but at any rate I appreciate your and everybody else's contributions.
 
ATKM said:
It's funny... hope isn't a currency I trade in.

I've been having an ongoing argument with a close friend of mine for decades about wether or not hope is a dangerous or crucially important element. I lean towards dangerous. My interpretation of the Pandora's Box story is that hope being the last remaining "sin" left in the box is that it IS dangerous.

However... perspective is something that I do believe in and so when I read stories (like in this thread and that people have emailed me) about their own horror stories it is a nice reminder that while I am annoyed and exhausted and tired of the ever growing mountain of prescription drugs on my desk... that in the grand scheme of things I am and will be ok.

Perhaps that's just another version of hope but at any rate I appreciate your and everybody else's contributions.
Click to expand...
you are a hockey fan and you don't trade in hope?
what is life without hope.
 
ATKM said:
It's funny... hope isn't a currency I trade in.

I've been having an ongoing argument with a close friend of mine for decades about wether or not hope is a dangerous or crucially important element. I lean towards dangerous. My interpretation of the Pandora's Box story is that hope being the last remaining "sin" left in the box is that it IS dangerous.

However... perspective is something that I do believe in and so when I read stories (like in this thread and that people have emailed me) about their own horror stories it is a nice reminder that while I am annoyed and exhausted and tired of the ever growing mountain of prescription drugs on my desk... that in the grand scheme of things I am and will be ok.

Perhaps that's just another version of hope but at any rate I appreciate your and everybody else's contributions.
Click to expand...

I've always kinda "brushed off" the notion of "hope" in a world where in majority of cases it's all about sheer luck.

But then the whole "hope" stuff kinda started to make sense in case of a matter of "life and death".

I've had, by most accounts, horrid luck with my health, given my age. But so far, it's OK, I'm fine and if I would've lost hope that it would be OK and manageable (at least for a reasonable amount of the rest of my life) without severe implications on quality of my life, it would be *so much worse* even if the treatment worked just the same. I would be mentally shattered and probably unable to "restart" my "normal" life again.

But there is one incredibly important thing - support from people close to you. I've had immesurable support from my family, friends...and without that, who knows how things would go.

Sure, hope is maybe just being afraid of accepting the possibility of a bad outcome and/or simple ignorance. So I was too a skeptic. But I think in tough times like this, one can definitely "learn" to be an optimist and keep your head up, IF you have the support from loved ones and a working healthcare system, of course.
 
Dr. Naysay / JC, loved hearing Kings Talk this morning, praying you made it through the first round of chemo today, prayers and well wishes for speedy recovery through your treatments, love you and ATKM is not the same without you! Go Kings Go, win this round for Jesse!!!!!
 
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Prayers JC! Take care and best wishes, I'm catching up slowly on ATKM and its great to hear your voice and of course your hockey wisdom!
 
thanks again for all the kind words and thought

I'm reluctant to get too excited about the news because I don't know if I could handle the emotional stress of any kind of back sliding but based on a full body scan done in May as compared to one done in March there has been SIGNIFICANT reduction of cancerous activity and cells in my body.

This entire process has been incredibly weird and I appreciate everybody letting me experience it somewhat publicly.

I suspect that to some people it would be annoying because I think it would be annoying to me if I was watching someone else behave the way I have but it's just how I do things I guess. So... sorry if its annoying but a big genuine thank you to everybody that consistently wishes me well.
 
Thanks for sharing the great news Jesse. And you do whatever want and share whatever you want. We're all rooting for you and hope you're back at TSC and the games soon. And doing whatever else makes you happy.
 
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