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jerryskids

I have Cancer :/

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9 minutes ago, jerryskids said:

Thanks.  It’s quite impressive, in an unimpressive way, how many phone calls I get directly on my phone from care providers for my at-home care (vs. my wife’s phone, which they all have and know is the primary contact).  I just let her answer them at this point.

i understand that the Mayo might have an automatic “please rate your discharge and how is it going at home?”  But i would expect better from the company which specializes in laryngectomy supplies.  :dunno: 

I could imagine that their communications are set up for 95% and they don't put enough into it to allow for an alternative method of communication. My thinking is that I just hope they get my medications correct and they don't cut off my arm. I have low expectations. :D

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So, anyways, nobody has time for this boo-hoo nonsense.

I want to know if you ever punched a woman in the face in an elevator for looking at you weird. Because, that is a ritual of the passage of life.

It's cathartic. And it's fun. And it's legal, as far as I know.

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6 minutes ago, phillybear said:

So, anyways, nobody has time for this boo-hoo nonsense.

I want to know if you ever punched a woman in the face in an elevator for looking at you weird. Because, that is a ritual of the passage of life.

It's cathartic. And it's fun. And it's legal, as far as I know.

Ray Rice ladies and gentlemen! 

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Update:

Not a great week.  This past Monday I had my ~2 week swallow test, after which this $#@! Feeding tube was to be removed.  Unfortunately the test showed a leak in a reconstructed area, so not only do I get to keep the tube for another 2.5 weeks, I get to wear something called a “jaw bra”.  Something like this:

https://images.app.goo.gl/ghFZLSMQcc6CKxdA8

Wednesday we met with the radiation oncologist.  Earlier he had indicated that this “adjuvant” therapy wouldn’t be too debilitating, but this time it seemed like he was prepping me for a tough treatment.  5 days per week from mid-November through year end, lots of bad side effects looming which are hopefully mostly temporary.  

As a bonus, I still don’t have that prosthetic device to help me speak again (TEP).  Because of the healing delay and need to start radiation (already delayed), they seem to be slow-playing me into the likelihood that it won’t even be installed until after radiation.  So I’ve increased my practice of alternate communication using lip speaking and the electrolarynx (robot thing on your throat, or in my case through a tube in my mouth because my neck is still swollen).

It’s not all bad; I do feel better every day, and I remind myself that they got all of the cancer, so I just need to get through the next two months and come out of it as strong as possible. :thumbsup:

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Thanks for the update Jerry.  Sorry to hear things aren't going as well as possible, but as noted it could be worse.  Hang in there!

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13 minutes ago, jerryskids said:

 a “jaw bra”

 

Can size? :dunno:

  • Haha 1

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16 minutes ago, jerryskids said:

Update:

Not a great week.  This past Monday I had my ~2 week swallow test, after which this $#@! Feeding tube was to be removed.  Unfortunately the test showed a leak in a reconstructed area, so not only do I get to keep the tube for another 2.5 weeks, I get to wear something called a “jaw bra”.  Something like this:

https://images.app.goo.gl/ghFZLSMQcc6CKxdA8

Wednesday we met with the radiation oncologist.  Earlier he had indicated that this “adjuvant” therapy wouldn’t be too debilitating, but this time it seemed like he was prepping me for a tough treatment.  5 days per week from mid-November through year end, lots of bad side effects looming which are hopefully mostly temporary.  

As a bonus, I still don’t have that prosthetic device to help me speak again (TEP).  Because of the healing delay and need to start radiation (already delayed), they seem to be slow-playing me into the likelihood that it won’t even be installed until after radiation.  So I’ve increased my practice of alternate communication using lip speaking and the electrolarynx (robot thing on your throat, or in my case through a tube in my mouth because my neck is still swollen).

It’s not all bad; I do feel better every day, and I remind myself that they got all of the cancer, so I just need to get through the next two months and come out of it as strong as possible. :thumbsup:

Luckily they didn't give you this model.

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18 minutes ago, phillybear said:

Cancer size? :dunno:

Fixed

 

 

 

 

 

 

 

 

 

 

Keep fighting JK :thumbsup:

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49 minutes ago, jerryskids said:

It’s not all bad; I do feel better every day, and I remind myself that they got all of the cancer, so I just need to get through the next two months and come out of it as strong as possible. :thumbsup:

Ok so if they got all of the cancer that’s great news. Being a weird robot freak for a few months is nothing as long as your own cells aren’t killing you from the inside out anymore. Just have to hang in there.

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1 hour ago, jerryskids said:

Update:

It’s not all bad; I do feel better every day, and I remind myself that they got all of the cancer, so I just need to get through the next two months and come out of it as strong as possible. :thumbsup:

Thanks for the update and keep the positive attitude my man!

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2 hours ago, jerryskids said:

Update:

Not a great week.  This past Monday I had my ~2 week swallow test, after which this $#@! Feeding tube was to be removed.  Unfortunately the test showed a leak in a reconstructed area, so not only do I get to keep the tube for another 2.5 weeks, I get to wear something called a “jaw bra”.  Something like this:

https://images.app.goo.gl/ghFZLSMQcc6CKxdA8

Wednesday we met with the radiation oncologist.  Earlier he had indicated that this “adjuvant” therapy wouldn’t be too debilitating, but this time it seemed like he was prepping me for a tough treatment.  5 days per week from mid-November through year end, lots of bad side effects looming which are hopefully mostly temporary.  

As a bonus, I still don’t have that prosthetic device to help me speak again (TEP).  Because of the healing delay and need to start radiation (already delayed), they seem to be slow-playing me into the likelihood that it won’t even be installed until after radiation.  So I’ve increased my practice of alternate communication using lip speaking and the electrolarynx (robot thing on your throat, or in my case through a tube in my mouth because my neck is still swollen).

It’s not all bad; I do feel better every day, and I remind myself that they got all of the cancer, so I just need to get through the next two months and come out of it as strong as possible. :thumbsup:

jaw bra...ha.  sorry for the set back.  

2 hours ago, fandandy said:

Luckily they didn't give you this model.

golf clap

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Kick ass Falco.

 

Great attitude. I bet the people around you are hugely proud of you.

 

Sure as hell should be.

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I disappear for three years and you have to hit me with this.....damn it Jerry. 😭 I don't pray but I'm sure as hell hoping for the best.  What i remember you are a class act and you are showing it every day keep up the fight. 

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Thanks for the update Jerry.

2020 is the suckiest year to ever suck.  2021 will be here soon and it's a brand new year!

Prayers brother!  Be strong.

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On 10/18/2020 at 5:57 AM, sheadtoo said:

I disappear for three years and you have to hit me with this.....damn it Jerry. 😭 I don't pray but I'm sure as hell hoping for the best.  What i remember you are a class act and you are showing it every day keep up the fight. 

 

1 hour ago, BLS said:

Thanks for the update Jerry.

2020 is the suckiest year to ever suck.  2021 will be here soon and it's a brand new year!

Prayers brother!  Be strong.

Thanks guys.  My radiation should end around the end of the year so I’m certainly looking forward to a better 2021, where I continue to adapt to my “new normal.”  

I would write off 2020 as “one of those years,” but I can’t recall a year anything like this, so I’m not sure that phrase is appropriate.

Small update:  this is a bit of an off week.  I have my 98720348th Covid test later today in advance of a consultation with a surgeon Wednesday to discuss installing my TEP (the device that will enable me to talk.  Well, warble).  I’m emotionally preparing for him to say that he wants to wait until after radiation, but there is a chance that they’ll do it prior.  Fingers crossed.

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On 10/16/2020 at 12:59 PM, jerryskids said:

Update:

Not a great week.  This past Monday I had my ~2 week swallow test, after which this $#@! Feeding tube was to be removed.  Unfortunately the test showed a leak in a reconstructed area, so not only do I get to keep the tube for another 2.5 weeks, I get to wear something called a “jaw bra”.  Something like this:

https://images.app.goo.gl/ghFZLSMQcc6CKxdA8

Wednesday we met with the radiation oncologist.  Earlier he had indicated that this “adjuvant” therapy wouldn’t be too debilitating, but this time it seemed like he was prepping me for a tough treatment.  5 days per week from mid-November through year end, lots of bad side effects looming which are hopefully mostly temporary.  

As a bonus, I still don’t have that prosthetic device to help me speak again (TEP).  Because of the healing delay and need to start radiation (already delayed), they seem to be slow-playing me into the likelihood that it won’t even be installed until after radiation.  So I’ve increased my practice of alternate communication using lip speaking and the electrolarynx (robot thing on your throat, or in my case through a tube in my mouth because my neck is still swollen).

It’s not all bad; I do feel better every day, and I remind myself that they got all of the cancer, so I just need to get through the next two months and come out of it as strong as possible. :thumbsup:

Still hangin’ tough and keeping a positive attitude.  Happy to see it!

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1 hour ago, jerryskids said:

 

Thanks guys.  My radiation should end around the end of the year so I’m certainly looking forward to a better 2021, where I continue to adapt to my “new normal.”  

I would write off 2020 as “one of those years,” but I can’t recall a year anything like this, so I’m not sure that phrase is appropriate.

Small update:  this is a bit of an off week.  I have my 98720348th Covid test later today in advance of a consultation with a surgeon Wednesday to discuss installing my TEP (the device that will enable me to talk.  Well, warble).  I’m emotionally preparing for him to say that he wants to wait until after radiation, but there is a chance that they’ll do it prior.  Fingers crossed.

Your doctor really should focus on amplifying Black and brown voices, but I suppose an exception can be made for you.  <_<

Best of luck.  :thumbsup:

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55 minutes ago, Mookz said:

Your doctor really should focus on amplifying Black and brown voices, but I suppose an exception can be made for you.  <_<

Best of luck.  :thumbsup:

It's not a computer they can program so he can speak jive 😜

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Have they fitted you for your radiation torture mask yet?  Curious if your treatment will work the same as mine did. 

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8 minutes ago, DonS said:

Have they fitted you for your radiation torture mask yet?  Curious if your treatment will work the same as mine did. 

Not yet.  I’ve got 5 appointments with radiation oncology on 11/5, one of which is called “simulation”, the others have variations of “consultation” in them.  Perhaps one of them is intended to create the mask?  Also I the treatments are tentatively scheduled to start the week of 11/16, so I suspect the mask will be scheduled for the week of the 9th.  Note that my neck is still fairly swollen from the operation, and this stupid compression jaw bra contraption is creating a noticeable dent in the swelling, so I suspect that needs to come close to healed before they can create a tight-fitting brace.

That reminds me, I had a question which I’ll PM you.  :cheers:

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6 minutes ago, jerryskids said:

Not yet.  I’ve got 5 appointments with radiation oncology on 11/5, one of which is called “simulation”, the others have variations of “consultation” in them.  Perhaps one of them is intended to create the mask?  Also I the treatments are tentatively scheduled to start the week of 11/16, so I suspect the mask will be scheduled for the week of the 9th.  Note that my neck is still fairly swollen from the operation, and this stupid compression jaw bra contraption is creating a noticeable dent in the swelling, so I suspect that needs to come close to healed before they can create a tight-fitting brace.

That reminds me, I had a question which I’ll PM you.  :cheers:

The "simulation" is probably when they'll make the mask.  They make the mask and then get you lined up in the machine and will mark it up to ensure proper placement each time.

Be sure and ask them if you can bring in your own music. I made a fock cancer playlist (heavy on the Iron Maiden) that they would crank during my treatments.  Every bit helps. 

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8 minutes ago, Strike said:

Update?

Worst news is that I correctly anticipated that they want to wait until after radiation (and a few bonus weeks for healing) before inserting the TEP.  Radiation ends around end of year, and I have a consult with the surgeon mid January, so I'd guess end of January.  Until then it is mouth breathing and the electrolarynx thing.  On the former I've actually started to do some "esophageal speech" which is fancy for "burp talking."  It's a slightly more audible mouth-speak.  I've also been trying to get that electrolarynx to work but my throat is still swollen and the mouth attachment doesn't work well.  I've got my first formal class on it next Tuesday, and I want to work on it some more before then, but not too much to get bad habits ingrained.

Radiation prep last week went as expected.  If I need a feeding tube it will be in my abdomen this time, which sounds better than that focking nose one.  Plus this should be supplemental, not 100% of food (only if my throat is sore enough to limit my caloric intake and I start to lose weight).  They made my mask to bolt me to the table, fun story I told @DonS on PM:  I was lying on the table completely immobilized while the mask was forming on my face.  I can't utter a sound because of no voice box. Hands gripping a ring to stay still. The radiation oncologist walked in and said to me "how are you doing?"  I was lying there like the wounded guy in Metallica One, my mind working but unable to communicate in any way.  "Hold my breath as I wish for death / Oh please God, wake me".  It was somewhere between funny and sad.

We finally fessed up to my situation on Facebook; the response has been great.  Friends have started emailing other groups of friends, so I'm getting a lot of emails from that second level communication.  

As I type this I have the hiccups, this is the second time.  Pre-surgery I would get rid of them by holding my breath.  But I can't do that now.  FML...

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So your feeding tube is via your nose?  I had the one through the abdomen.

Hopefully they'll shove yours in when you're still feeling relatively healthy.  I got mine shoved in after ending up at the ER due to chemo.  Next few days it hurt like a muthafocka which made getting in and out of the hospital bed a great lesson in pain.

Good luck. 

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Thanks for the update JK.

Sucks that they are running you through the wringer, but it'll get better soon.

Glad the FB thing went well.  One never knows anymore.

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You got a great attitude I know you're impressing the hell out of your family and friends. Cuz you're damn sure doing here.

So when this is all done, will you ever be able to carry a baby to full term again?

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Thanks for the update.  Sorry to hear things aren't going as quickly or smoothly as hoped, and that you have the hiccups ;).  Hang in there.  Just remember there's a light at the end of the tunnel.  Just need to get there.

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3 hours ago, Strike said:

Thanks for the update.  Sorry to hear things aren't going as quickly or smoothly as hoped, and that you have the hiccups ;).  Hang in there.  Just remember there's a light at the end of the tunnel.  Just need to get there.

No!!!!  Jerry, stay away from the light!!!! 

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Jeez when I read these updates and DonS stories I really really wonder if I’m strong enough to do that. You guys are rocks !!!

Good luck brothers

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9 hours ago, wiffleball said:

You got a great attitude I know you're impressing the hell out of your family and friends. Cuz you're damn sure doing here.

So when this is all done, will you ever be able to carry a baby to full term again?

:thumbsup:

:lol:

 

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9 hours ago, wiffleball said:

You got a great attitude I know you're impressing the hell out of your family and friends. Cuz you're damn sure doing here.

So when this is all done, will you ever be able to carry a baby to full term again?

:lol: 

5 hours ago, DonS said:

No!!!!  Jerry, stay away from the light!!!! 

I thought the same when I read it.  :o  :lol:  

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you really stink.  your politcal positions are stupid.  thats it.  but yeah, hope dumb comments help.  honestly, get well soon, thanks for sharing. 

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Sending you good thoughts, jerry! 💖

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