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Hello again! I have cancer.


BoneDaddy

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Having undergone colon prep twice in two years, I hear you. Which doesn't help the OP very much.

 

I should be finding out for sure what happened on my recent colonoscopy in a couple of weeks, over a month after the procedure.

 

A lot of us are going to be battling cancer in their lives at one time or another. There's a famous ESPN clip that I will save for another setting.

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On 8/19/2020 at 8:35 AM, BoneDaddy said:

I was hoping you’d drop by - the thread wouldn’t be complete without you being here!

 

Now BEGONE foul spirit!

 

 

my favorite moment when an NGD habitue was accidentally summoned was when someone said “I shake my fist in impotent rage!” And Rage dropped in to say “Hey!!!”

 

Best wishes friend. I could ask Rage to drop by, but it wouldn’t be the same now I jinxed it. 

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On 8/19/2020 at 7:36 AM, archer said:

 

I'm on 400 mg of Gabapentin 4 times a day, which is close to the maximum allowable dosage to treat pain. I've been on that for maybe 17 years as part of my pain treatment regimen. 

 

I've found the best way to handle the keeping track of objects is to have one (or perhaps two) places for each item in my life. If it isn't on my person, it's in its place. And I don't ever put anything down without thinking about it or without walking it to put it in its place.

 

 

I’m taking 3 300s, 3x a day - 2700!  Long term use would wreck me at these levels. The way gabapentin interferes with short term memory formation is really cool (neurologically) and a pain in the ass conversationally. Keeping track of a four sentence idea is getting hard now. 
 

I’ve already been living with ADD that has made those “where did I put that?!” habits very important to have and very costly to deviate from. Even without gabapentin I’ve lost my wallet in my house note times th an I’d care to count, or to share quite honestly. The hard parts for me are my willfully disobedient hands that just put stuff down wherever  no damn reason without telling me. 

 

I need more of those placement habits now than I needed before, and I’ve added some more wearable reminders - some cheap bead necklaces left over from my last Con attendance (Low budget quest rewards from my Benevolent Quest Giver costume). Three yellow ones to keep track of whether I’ve taken my scheduled gaba doses, a green one to remind me if I’ve started a load of laundry that I’d rather not turn to compost in the washer, and a red one to remind me I’ve got something cooking. 
 

1600 all the time sounds like quite an adjustment. My concussion about a decade ago was a minor cognitive life changing event, in that it made my already bad ADD frankly debilitating in some ways, which has been very hard for me to accept.  I have a friend with a back injury that has left her with a more or less permanent gaba scrip, and it has definitely had an impact on how she interacts with her own body and the world. Gabapentin hasn’t really changed who I am the way the  concussion did, but everything takes longer and more specific concentration. 

On 8/24/2020 at 1:13 AM, Cancer said:

:hush:

Yeah you better run! 😄  But really, if you point over my shoulder and yell “Squirrel!” I’ll forget what I was doing in the first place. 

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1 hour ago, BoneDaddy said:

I’m taking 3 300s, 3x a day - 2700!  Long term use would wreck me at these levels.

 

1800 total a day is the maximum dosage when used as a simple pain treatment.

 

They are supposed to go up to 2700 only for epilepsy or for postherpetic neuralgia (intense pain coming from a damaged nerve).

 

Not to worry you but you might ask your doctor if they're expecting your throat cancer treatments to damage your nerve endings or something.

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4 hours ago, archer said:

 

1800 total a day is the maximum dosage when used as a simple pain treatment.

 

They are supposed to go up to 2700 only for epilepsy or for postherpetic neuralgia (intense pain coming from a damaged nerve).

 

Not to worry you but you might ask your doctor if they're expecting your throat cancer treatments to damage your nerve endings or something.

Pain management for this type of cancer is essential - the longer I can keep eating, chewing, and speaking, the greater my odds on making a full physical recovery, in addition to staying cancer free. I’m getting treated at Johns Hopkins (finally a benefit to living in Baltimore!) And their modality for throat cancer is becoming the global standard. Not swallowing for two weeks in your forties massively increases your chances of having serious swallowing difficulties in your sixties. I’m not certain under which rubric they are justifying the prescription, but the upshot is this - better pain management now = better outcomes later. At other hospitals treatment starts with a NG tube, and a year of learning how to swallow again. I’m working on strengthening my swallowing muscles now, and continuing to eat, and that relies on aggressive pain management. 

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1 minute ago, BoneDaddy said:

Pain management for this type of cancer is essential - the longer I can keep eating, chewing, and speaking, the greater my odds on making a full physical recovery, in addition to staying cancer free. I’m getting treated at Johns Hopkins (finally a benefit to living in Baltimore!) And their modality for throat cancer is becoming the global standard. Not swallowing for two weeks in your forties massively increases your chances of having serious swallowing difficulties in your sixties. I’m not certain under which rubric they are justifying the prescription, but the upshot is this - better pain management now = better outcomes later. At other hospitals treatment starts with a NG tube, and a year of learning how to swallow again. I’m working on strengthening my swallowing muscles now, and continuing to eat, and that relies on aggressive pain management. 

 

Thanks for the response. I talk to so many people who are getting treatment at backwoods hospitals that when I hear something that sounds fishy that I feel obligated to follow up.

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Sounds like an eminently sensible treatment to me. Radiation therapy these days is so tightly focused compared to what they could do just a couple of decades ago, but in that area there will be neurological damage. Keeping nerves and muscles used to swallowing while burning away the treasonous cells? I like it.

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On 8/28/2020 at 5:55 PM, Cancer said:

Isn't throat cancer one of the diseases where they use proton therapy (rather than gamma rays, protons from an accelerator) exactly because the area is full of important and sensitive structures?

Yes! They strap me to a slab ( down in the lab) and point a linear accelerator at my neck. To hold me down juuuuust right they made a nifty mask of my face that bolts to the slab. It has a mouth guard in it to keep my jaw extended away from the danger zone as much as possible. The doc has programmed the accelerator to aim at exactly the right spots on my neck. (You can see three cross hairs on my neck in the photo - the computer uses those to line up the linear accelerator’s aim.). The inflammation of the non- cancerous tissues is used to squeeze the tumor into the line of fire. The whole thing is really cool, aside from the throat cancer part. 
 

(edit: yes, I asked them to wait a minute before they started so I could take a selfie.)

A40FBA1E-8872-45F1-ABB3-6918358CA79B.jpeg

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Hey all!

 

treatment for throat cancer is allegedly more physically challenging than most. It certainly did suck at the end, and the healing process has continued to be somewhere between painful and merely aggravating since. By the end of October I had received all the radiation my neck can take, I think ever. We will take a look via PET scan on December 28 to see if they got it or not. Dear lord I hope so. 
 

I feel more or less fine, but far from perfect. The waiting is the hardest part right now: without the PET scan I’m Schroedinger’s cat, both fine and doomed simultaneously. 
 

I’m still having a hard time keeping my weight up, a ridiculous complaint for a middle aged American. Eggnog is a fantastic way to inhale calories, and I am getting a bit sick of it.  I look much better than I did a month ago, so everyone in the house is looking at me less balefully than they did before. 

 

as far as we can currently tell, I don’t have cancer anymore. As far as we can tell right now.  December 28 will, I dearly hope, provide better evidence for that conclusion. 
 

 

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