I have Cancer :/ -- still doing well

[jerryskids 6,409]

4 minutes ago, Voltaire said:

The conversaton shifted from 'if' to 'when' ... damn, man. I don't have anything witty to say to that.

Hopefully your mom's anti-cancer genes kick in. If not, I hope that they can drag your time out in a pain-free manner for as long as possible. And it's not you're not facing this from a wheelchair, you have a lot of life and energy in you yet to get the most out of what you have left. 

When Carl Sagan was dying, he wrote some pretty eloquent stuff. I read that in my early twenties, maybe even my teens, and I imagined that I'd want to re-read that again when the time came. Tuesdays with Morry, the same.

I’m actually thinking of writing something.  I’ve always wanted to write a book, and I have an idea that revolves around me picking my ideal afterlife based on my life experiences.  It would be an excuse to document my thoughts and life for my kids.

[DonS 3,288]

2 minutes ago, jerryskids said:

I’m actually thinking of writing something.  I’ve always wanted to write a book, and I have an idea that revolves around me picking my ideal afterlife based on my life experiences.  It would be an excuse to document my thoughts and life for my kids.

So it's going to be a homoerotic thriller?

[Voltaire 5,076]

6 minutes ago, DonS said:

So it's going to be a homoerotic thriller?

Islam offers you 72 virgins. That's a great deal, man. Hard to pass up.

[Frozenbeernuts 1,987]

18 minutes ago, jerryskids said:

I’m actually thinking of writing something.  I’ve always wanted to write a book, and I have an idea that revolves around me picking my ideal afterlife based on my life experiences.  It would be an excuse to document my thoughts and life for my kids.

That is actually a really interesting idea.

[fandandy 3,313]

Jerry, I'm sorry dude.  Hopefully, the prognosis isn't as bad as it sounds right now.  I have been following along like everyone else but not replying much.  You have always been in my thoughts though and I have much respect for your attitude thus far throughout this.  It's truly been remarkanble.  I wish you the best.  You are one of the good ones.  

[Fireballer 2,634]

4 hours ago, jerryskids said:

Cancer cells are fueled by sugar;

Which is why it's so astounding that most people who are morbidly obese aren't simply falling over dead from cancer. 

[wiffleball 4,775]

4 hours ago, Voltaire said:

Islam offers you 72 virgins. That's a great deal, man. Hard to pass up.

Well yeah, if you want to spend your entire Afterlife with a busload of Mathletes. 

[wiffleball 4,775]

Dammit Jerry. 

 

Just...dammit. 

[jerryskids 6,409]

Met the oncologist this morning, have a plan for a plan anyway. They are testing my biopsy for PDL1, a protein which stops your immune system from attacking. If the levels are high, I'll start with immuno only, because that targets this PDL1 problem. If not high enough, I'll do both immuno and chemo. In parallel they will do that caris test I mentioned above, but expectations are low for my type of cancer. Should know PDL1 results by end of week, and we mutually decided to start treatment on 5/20 (after my return from Michigan for the memorial). This is the typical first line of treatment with the best documented results; if unsuccessful we can try things like radiation (including the abscopal effect, interesting if you google it) and he alluded to clinical trials although we didn't discuss details. So, things are in motion...

 

I guess if you are the praying or rooting sort, a high PDL reading is a good thing to hope for.  Immunotherapy is generally tolerated well with minimal side effects, and can be administered for up to two years if needed.  I'm due for a positive test result in all of this. 

 

As a side note, I'm a little disappointed that they don't have the PDL1 results yet (and honestly, I don't think they've started the process yet).  The systems engineer in me says they could have done this a week ago, but I realize that the medical establishment runs on a different expectation of systems, which includes the gate which was my meeting with the oncologist this morning so he can say "oh yeah, we should run that test" and charge that pearl of wisdom to my insurance company.  I believe that I otherwise successfully communicated to him my urgency and willingness to attack this aggressively, so I didn't unleash my fury on him.  My wife was happy; she had the same thought about the test and was afraid I would go off the rails.   

[Strike 5,024]

Thanks for the update Jerry.  Me and the GF (34C) are thinking about you and hoping for the best.  You have the right mindset.  Keep fighting. 

[TheNewGirl 1,285]

Sending you good vibes, Jerry!  

[Old School 360]

Alright Skids. 1st- get up to Michigan with the family.
When you return home, hit this thing head on, and kick its ass. 
You got this. Just pay attention to the follow thru!

 

[Gladiators 1,961]

Any chance some GC dik pics would help?

[jerryskids 6,409]

3 minutes ago, Gladiators said:

Any chance some GC dik pics would help?

I think my wife already has them all, but thanks for offering.    

[Gladiators 1,961]

12 minutes ago, jerryskids said:

I think my wife already has them all, but thanks for offering.    

Perfect. I was going to offer boob pics, but I knew you had those.

[DonS 3,288]

@jerryskids You should apply for a part time job at BK.  You might just hit the jackpot!

https://www.foxnews.com/food-drink/former-burger-king-employee-awaded-2m-lawsuit

 

 

[Fireballer 2,634]

I get a knot in my stomach every time I see theres a response to this thread.  

[jerryskids 6,409]

1 hour ago, DonS said:

@jerryskids You should apply for a part time job at BK.  You might just hit the jackpot!

https://www.foxnews.com/food-drink/former-burger-king-employee-awaded-2m-lawsuit

 

 

 

I've actually wondered about things like if I have any ADA protections.  Since I'm planning to retire anyway, maybe I can figure out how to go out in a blaze of financial glory.  

[jerryskids 6,409]

1 hour ago, Fireballer said:

I get a knot in my stomach every time I see theres a response to this thread.  

Update:  I've got meh... and good news.

The meh... news is that it looks like there may be a week or two delay in the start of my treatments.  I'll skip the details except to tell Mayo that this timeline is unacceptable.  They just got back to me as I typed and said all of the words I was hoping to hear, so we'll see...

The good news is that I had a swallow study today (heh heh) which showed that my new Frankenstein esophagus is shaped more like a toilet bowl than a funnel (my scientific jargon), which causes food/liquid/saliva to pool at the bottom of the bowl, which is where my voice prosthetic is.  This very likely is contributing to, if not the primary cause of, my wet gargly speech and related difficulties.  Apparently there are some ways to dilate the opening and make it more funnel-like, although those methods aren't permanent so I'd need to go back occasionally.  I'm hoping to have that recurring problem.   

[Fireballer 2,634]

14 minutes ago, jerryskids said:

 I'm hoping to have that recurring problem.   

Yes, hoping you have many years of getting your funnel flushed

[Hardcore troubadour 14,653]

I love the story about your mom. Your turn.  All the best.  

[fandandy 3,313]

 

17 minutes ago, jerryskids said:

The good news is that I had a swallow study today (heh heh) which showed that my new Frankenstein esophagus is shaped more like a toilet bowl than a funnel (my scientific jargon), which causes food/liquid/saliva to pool at the bottom of the bowl, which is where my voice prosthetic is.  This very likely is contributing to, if not the primary cause of, my wet gargly speech and related difficulties.  Apparently there are some ways to dilate the opening and make it more funnel-like, although those methods aren't permanent so I'd need to go back occasionally.  I'm hoping to have that recurring problem.   

Let hope their fix isn't some sort of flushing mechanism jutting out the side of your neck.  

Jerry, can you flush, please.  We can't understand a word you're saying...

[Voltaire 5,076]

Your definition of 'good news' differentiates from mine.

[Voltaire 5,076]

15 hours ago, DonS said:

@jerryskids You should apply for a part time job at BK.  You might just hit the jackpot!

https://www.foxnews.com/food-drink/former-burger-king-employee-awaded-2m-lawsuit

 

 

 

[jerryskids 6,409]

13 hours ago, Voltaire said:

Your definition of 'good news' differentiates from mine.

When life throws you a curve ball, sometimes that fastball on the corner doesn’t look that bad.  Last week I attended a monthly zoom call for head and neck cancer patients from Mayo Phoenix.  Once again I was the only laryngectomy — the others all had other treatments but could speak.  During intros the people before me were all psyched about getting the “all clear” from their recent scans.  Yeah, I killed that buzz.  Anyway, listening to others complain about a slight problem swallowing certain carbs, I finally just hung up because it was too depressing.

But I digress.  I’ve been not happy with how this prosthetic is going, and it was impacting my ability to turn this crap-filled pile of rotten lemons into lemonade, so seeing a path to possible better communication is a big deal.

[Frozenbeernuts 1,987]

2 minutes ago, jerryskids said:

When life throws you a curve ball, sometimes that fastball on the corner doesn’t look that bad.  Last week I attended a monthly zoom call for head and neck cancer patients from Mayo Phoenix.  Once again I was the only laryngectomy — the others all had other treatments but could speak.  During intros the people before me were all psyched about getting the “all clear” from their recent scans.  Yeah, I killed that buzz.  Anyway, listening to others complain about a slight problem swallowing certain carbs, I finally just hung up because it was too depressing.

But I digress.  I’ve been not happy with how this prosthetic is going, and it was impacting my ability to turn this crap-filled pile of rotten lemons into lemonade, so seeing a path to possible better communication is a big deal.

That is definitively a positive then. Hopefully they get it ironed out soon

[Strike 5,024]

Something I've been wondering.  Does your voice prosthetic make you sound like Darth Vader?  Cause you could have some good role play scenarios with the wife if it does.........

[Voltaire 5,076]

10 minutes ago, jerryskids said:

When life throws you a curve ball, sometimes that fastball on the corner doesn’t look that bad.  Last week I attended a monthly zoom call for head and neck cancer patients from Mayo Phoenix.  Once again I was the only laryngectomy — the others all had other treatments but could speak.  During intros the people before me were all psyched about getting the “all clear” from their recent scans.  Yeah, I killed that buzz.  Anyway, listening to others complain about a slight problem swallowing certain carbs, I finally just hung up because it was too depressing.

But I digress.  I’ve been not happy with how this prosthetic is going, and it was impacting my ability to turn this crap-filled pile of rotten lemons into lemonade, so seeing a path to possible better communication is a big deal.

What I interpreted as a small improvement isn't actually so small after all then. Being grateful for whatever upgrade is a blessing at this point.

[Voltaire 5,076]

On 9/18/2020 at 12:34 PM, Voltaire said:

I told Jerry earlier about my friend who smoked himself into throat cancer and out of his vocal chords. He holds a device up to his neck and pushes a button that allows him to speak. Like I said then, he sounds like a robotic Darth Vader when he speaks. When talking to someone new over the phone, they ask him all the time if they are speaking to an answering machine. 
 

This isn’t my friend but this is what that looks like:
https://vignette.wikia.nocookie.net/mynameisearl/images/7/7e/ElectrolarynxGuy.jpg/revision/latest/scale-to-width-down/340?cb=20090403060421

 

4 minutes ago, Strike said:

Something I've been wondering.  Does your voice prosthetic make you sound like Darth Vader?  Cause you could have some good role play scenarios with the wife if it does.........

In September, befoer he underewent surgery, I used that very description of "Darth Vader" to Jerry about a friend of mine.

[jerryskids 6,409]

6 minutes ago, Strike said:

Something I've been wondering.  Does your voice prosthetic make you sound like Darth Vader?  Cause you could have some good role play scenarios with the wife if it does.........

Yeah, now that you mention it, maybe a little.  Certainly my electrolarynx is robotic, probably more Darth Vader-ish.  Not sure that is a fetish of my wife though.   

On a serious note, one of the little things you don’t realize until it is gone:  the ability to make sounds during sex.  It is a bit of a chore for me to do it now.  Perhaps this dilation will help make that easier as well, which would be another bonus.   

[Strike 5,024]

Just now, jerryskids said:

Yeah, now that you mention it, maybe a little.  Certainly my electrolarynx is robotic, probably more Darth Vader-ish.  Not sure that is a fetish of my wife though.   

On a serious note, one of the little things you don’t realize until it is gone:  the ability to make sounds during sex.  It is a bit of a chore for me to do it now.  Perhaps this dilation will help make that easier as well, which would be another bonus.   

Can't you just have a background soundtrack to make the noises for you?  Half the bad pron I've seen has dubbed noises that don't even match up with the mouth movements of those they're supposedly coming from.

[jerryskids 6,409]

4 minutes ago, Strike said:

Can't you just have a background soundtrack to make the noises for you?  Half the bad pron I've seen has dubbed noises that don't even match up with the mouth movements of those they're supposedly coming from.

Interesting idea.  We’ve discussed this a little but never really looked into it.  It wouldn’t be the same but, maybe better than nothing?   

[DonS 3,288]

<Darth Vader voice>

(breath noise) (breath noise) Who's a dirty girl? (breath noise) You like that don't you? (breath noise) (breath noise) I'm gonna smack that ass!

</Darth Vader voice>

 

[Voltaire 5,076]

1 minute ago, DonS said:

<Darth Vader voice>

(breath noise) (breath noise) Who's a dirty girl? (breath noise) You like that don't you? (breath noise) (breath noise) I'm gonna smack that ass!

</Darth Vader voice>

 

The farce is strong with this one.

[jerryskids 6,409]

5 minutes ago, Voltaire said:

The farce is strong with this one.

I was trying to come up with a "use the force" double entendre, but was drawing a blank.  

[wiffleball 4,775]

6 hours ago, jerryskids said:

Yeah, now that you mention it, maybe a little.  Certainly my electrolarynx is robotic, probably more Darth Vader-ish.  Not sure that is a fetish of my wife though.   

On a serious note, one of the little things you don’t realize until it is gone:  the ability to make sounds during sex.  It is a bit of a chore for me to do it now.  Perhaps this dilation will help make that easier as well, which would be another bonus.   

Omg. It hurts so bad to laugh right now! But I'm laughing my ass off picturing you there with a tambourine.

 

She "More Cowbell!"

[wiffleball 4,775]

6 hours ago, jerryskids said:

Yeah, now that you mention it, maybe a little.  Certainly my electrolarynx is robotic, probably more Darth Vader-ish.  Not sure that is a fetish of my wife though.   

On a serious note, one of the little things you don’t realize until it is gone:  the ability to make sounds during sex.  It is a bit of a chore for me to do it now.  Perhaps this dilation will help make that easier as well, which would be another bonus.   

 

[Mike Isles 583]

6 hours ago, DonS said:

<Darth Vader voice>

(breath noise) (breath noise) Who's a dirty girl? (breath noise) You like that don't you? (breath noise) (breath noise) I'm gonna smack that ass!

</Darth Vader voice>

 

Maybe as a side job join Cameo and make money leaving voice maIls as darth Vader. 

[Strike 5,024]

7 hours ago, jerryskids said:

Interesting idea.  We’ve discussed this a little but never really looked into it.  It wouldn’t be the same but, maybe better than nothing?   

You want us geek club studs to make some tapes you can use? 

[phillybear 366]

On 5/12/2021 at 12:23 PM, jerryskids said:

 I finally just hung up because it was too depressing.

Never underestimate the joy of hanging up on any kind of meeting on line. It's cathartic.

Every time work topics turn to politics, I accidentally lose my connection. They can't prove sh!t.