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General Discussions => Health, Fitness, Nutrition, and Medicine => Topic started by: brilligtove on January 19, 2016, 12:57:38 AM

Title: Cancer, Living With
Post by: brilligtove on January 19, 2016, 12:57:38 AM
Hello, folks. This is a long one. It's been a while.

The Energy Budget

In the weeks following the end of radiation and chemo I was an exhausted, bloody mess. Updates will start again now; much has happened, and we’re hitting some milestones.

The first thing to understand is the concept of an energy budget. I learned of it from an article I read some time ago, but I can’t find the source. Imagine that in an average day you have one dollar of energy to spend. Almost everything you do costs a penny. Getting dressed is a penny. Making breakfast. Ablutions. Commuting. Getting your kid ready. Going to a meeting. Dealing with something stressful. Writing an email… Well, you get the picture. If you’re lucky, you still have some spare change at the end of the day, and can do something with that energy, like read a book, or watch a show, or clean up a mess.

In the weeks following November 20th my energy budget got down to about 10¢. Less some days. After getting up from my night chair (I have to stay inclined, not horizontal) my days were very limited. Consider the following activities from any given day:

- Clean my bloody, crusted stoma and radiation damaged mouth – 1¢
- Wash up at sink (facecloth scrub of smelly / dirty areas) – 1¢
- Take a bath – 1¢
- Make a meal – 1¢
- Eat a meal – 1¢
- Clean up after a meal – 1¢
- Get dressed into fresh clothes – 1¢
- Get dressed for the weather outside – 1¢
- Take dogs for a 10 minute walk – 1¢
- Write something like a blog post or email – 1¢

That’s ten 1¢ activities, which seems reasonable enough – except some of them have to be done more than once in a day. My stoma, for example, usually cost 3¢. One dog walk cost another 2¢. Eating took 4¢ (I made and ate breakfast for two cents and had leftovers for lunch for a penny. Dinner, made by Kathleen, was another penny. She cleaned up everything related to those meals.)

You may have noticed that we’re now at 9¢. Some days my stoma needed extra attention, taking the last penny.Those days I didn’t wash up, didn’t get dressed, and didn’t write anything. Other days I could choose to do one of those things.

Of course I could borrow energy from the day to come. Each borrowed penny it would would knock two cents off the next day’s budget. There were some days where the dogs had to just go in the back yard.

By the time we reached mid December my energy budget was closer to 15¢ most days. That provided a tremendous degree of flexibility compared to the 10¢ level, but I still couldn’t do a lot. There was no discretionary spending.

Over Christmas – which was wonderful – I borrowed heavily from future days. Christmas Day at the Treehouse (the name of the house where my daughter and her moms live – not an actual treehouse) meant Boxing Day was an 11¢ day. I went to see Star Wars anyways because it was the only time my brother in law and sister in law could both join us. I didn’t go over budget that day, so the 27th I was back up to 15¢. I spent about 25¢ that day, since we threw a big potluck party for my family. It was awesome. I think we had 20 people in here, between the uncles, aunts, cousins, in laws, friends, and kids.

When you blow the budget by that much it takes a lot longer to recover. Sometime in the first week of January I was getting back up to the 15¢ level again. I have had some serious dips on some days, but most days are still at that 15¢ budget.

This is frustrating, as you might imagine. I have had some dark, unhappy, and miserable days. Being at this level of energy is expected; I’m not surprised or caught off guard by it. I’m still frustrated though. I’d say I’m champing at the bit, but that takes more energy than I have to spare.

I have started to go see my daughter on Monday evenings again, which has been wonderful, and tonight is her first overnight at the Doghouse since all this started, six months ago. We were – we are – all very excited by that! Livé and Diva baked chocolate chip cupcakes (I got to help do the icing). A bath was required after that, to get the batter out of her hair (Livé, not Diva). Then we had delicious cheesy baked noodle pie (Diva’s version of mac and cheese) and watched Underdog.

The ladies are asleep now, and I’ll be following shortly. I’m sure I have borrowed from tomorrow’s budget, but I’m fine with that. I’d spend it all for time with my daughter.

There’s a lot more to cover, of course. A new TEP, lymphedema, some writing, possible plans, scarf tying techniques, baseplate blunders, and upcoming appointments. If you’ve sent me instant messages or emails in the last few weeks and haven't heard back, please bear with me. I’m doing my best to get through them, but it is taking some time.

I hope all of you had a wonderful holiday filled with food, festivities, and family.

Be well.

--bt

P.S. ...

(http://i.imgur.com/voAl08w.jpg) (http://imgur.com/voAl08w)

The picture was inspired by a black and white image of Lemmie, Bowie, and Rickman giving the finger to cancer. I thought I'd add my voice.

(http://i.imgur.com/T25xL7w.jpg) (http://imgur.com/T25xL7w)
Title: Re: Cancer, Living With
Post by: The Latinist on January 19, 2016, 01:02:45 AM
Thank you for sharing.
Title: Re: Cancer, Living With
Post by: Skulker on January 19, 2016, 06:56:08 AM
Thank you for sharing.
^^ This.  I hope your energy bank keeps growing.   Keep on keeping on. :cheers: :tiphat:
Title: Re: Cancer, Living With
Post by: petrolpetal on January 19, 2016, 08:20:02 AM
Fuuuuck. That's a lot worse than I realised. At what rate is your energy bank expected to grow, more or less?

I read about the concept of an energy budget when I got into reading a whole lot of memoirs and stuff about Chronic Fatigue Syndrome/Myalgic Encephalomyelitis and Fibromyalgia. I had a student with CFS/ME and one with Fibromyalgia in the same year and that stimulated my interest. They described their process of strategic decision making in their energy 'spending' exactly as you do. They were so brave and so determined and we did everything we could to accommodate them - but it was impossible. The energy deficit chalked up by something like a test or assignment - or even just a reading - could never be made up even though they had supportive families and had abandoned any sort of social life. They both dropped out.   
Title: Re: Cancer, Living With
Post by: brilligtove on January 19, 2016, 08:31:49 AM
There is no clear recovery rate, though patients talk about looking back at the first year and being shocked at a little energy they had. My energy levels vary from $0.10 to $0.20 a day right now. I think I am on a gradual incline, but it's very hard to judge from inside the system.

Gotta run. I have an appointment with my chemo doctor today. More news as events warrant.
Title: Re: Cancer, Living With
Post by: brilligtove on January 19, 2016, 10:44:27 AM
2016-01-19 Chemo Checkup

I'm at Odette today, for a follow up with my chemo doctor. The driver today is a guy I quite like. He was late though; his earlier pickup was half an hour late, and that messed up my ride and the lady we got on the way. I can understand there being days when you just can't pull it together - but it stills feel inconsiderate.

With the cold, dry air today I need to irrigate and get some water in me before I can talk again. My throat feels tacky inside, which makes me gag, which is no fun for anyone. One of the many tradeoffs that comes with the reconstruction of my airway and esophagus is a much easier path for food to come up. (A good cough from the diaphragm can be enough to make me chew my cud.)

Next week I go for imaging - my first big CT scan, six months after surgery. I'm not expecting them to find anything unpleasant, but the mind does wander.

I'm in a holding cell right now. The resident came by to do the preliminary exam. She was nice, and embarrassed by her cold hands. "I got through chemo," I said. "Cold hands are not going to kill me."

I will see Joanne, my SLP, after the doctor comes through. I had a new TEP put in on Friday, and I'm pretty happy with it. It is a lower pressure valve, which means speaking is easier than before. It takes a lot less muscular work to get volume.

It is quite amazing how powerful an amplifier the normal human vocal apparatus really is. As a very loose analogy, think of a saxophone with a reed at one end and a big tube to resonate and shape the sound. My reed is no more; to make noise I have to vibrate the whole tube. That still takes a lot more energy than a normal voice requires, but the lower pressure valve really helps.

FBAEW
Title: Re: Cancer, Living With
Post by: lonely moa on January 19, 2016, 11:51:31 AM
Umm, I understand all too well.  Radio to the neck sucks.

I wish you well.
Title: Re: Cancer, Living With
Post by: Crash on January 19, 2016, 02:01:46 PM
 
  Sounds like you are in the shit worse than me Brilligtov.  I had a blog about my cancer for a while but I stopped because it makes people uncomfortable talking about it.  The never ending narrative of daily insults to the body makes for painful reading.  I can speak from personal experience that cancer fucks you up. 
  I am six years post allogeneic stem cell transplant for Leukemia. The mortality curve for my particular cytogenetics was so steep I am more than lucky to be alive. Daily improvements are so infinitesimal that you only notice after years.  My big strapping body dissolved during chemotherapy into a profoundly weak condition.  In spite of a lot of pain I can now work about four or five hours now without needing to catch up resting the next day.  I wear a fitbit to measure activity.  I went over ten thousand steps a few weeks back and that was the day I fell on my face and battered myself pretty bad.  I start to stumble after about four hours on my feet.  If I go too far, I need pain meds at night so my feet shut up and let me sleep.  If I take pain meds in the daytime I can walk more but I still pay with more recovery time. 
  All the while there is an anxiety about the cancer coming back.  You are never "cured". 
  I do find cancer biology to be very fascinating. 
Title: Re: Cancer, Living With
Post by: petrolpetal on January 19, 2016, 04:05:13 PM
 
 you guys are brave and yes, inspiring (like it or not, BT). Speaking for myself, your stories lend me courage - in all fields of life. Not just physiology . You control your life, you don't let the circumstances control it. I like that. I aspire to that.
Title: Re: Cancer, Living With
Post by: brilligtove on February 04, 2016, 05:22:51 PM
2016-02-04 CT Scandventures

Today we did the tests to see if anything undesirable is growing in what's left of my neck and the surrounding tissues. It's exciting and a little bit anxiety producing.

Here's how the day has gone so far.

0330: Get up to let the dogs out and have a tinkle.

0520: Wake up 10 minutes before my alarm. Have a minor hot flash. When I'm awake at this hour this is normal. Having some acid reflux, so I take my acid reflux pill now (usually taken at 0800 and 2000).

0525: Get up to take care of my blowhole.

0530: Still feeling too warm, but now I also feel chilled. How is that even supposed to work biologically? I climb into bed for a minute to try to get comfortable.

0540: Dress for a walk with the boys, including long johns under my jeans and a t-shirt and Great Big Sea hoodie on top. There is minor enthusiasm. I'm not mom.

0545: Out the door. Back in for poop bags. Out the door. Back in for treats. Out the door. Walking.

0605: Return home. Give the boys breakfast. They normally walk for an hour in the morning with mom, but they know dad walks are short in the morning, long in the evening. Wally does not want his food. I suspect he is pining from mom.

0610: On the road to Sunnybrook.

0613: Back home to get my pipe cleaner, which was in my other coat.

0614: On the road to Sunnybrook.

0640: Into the main parking lot at M wing. My appointment is at room AG256. That's A wing, Ground floor, room 256. I follow the signs to the A wing, go down a floor to G, and find the MRI/CT Reception area.

0645: The reception is closed. I presume they will open at 0700. I'm having an intense powersurge hot flash. Jacket comes off, but my t-shirt is ratty so I don't want to remove my hoodie, and I can't get out of my long johns here.

0655: The heat is unbearable. I walk toward the Odette centre, looking for a bathroom. I don't find any on the way, so end up changing in one of the radiation unit washrooms. Fresh t-shirt from my bag (I carry a spare for goomergencies and goocidents) and long johns into the bag. Sweat shirt off too. I stand in the bathroom in only my underwear for a long moment, cooling off a bit.

0700: Dress again and then head back to the reception area. My alarm goes off, reminding me to take my synthroid pill. My pill is not in my possession: I forgot to bring it.

0703: They are opening the gates, and getting started.

0708: I check in, still sweating. The very ice woman at reception says, "Oh, you're very early." I explain that the instructions on MyChart were clear: if you're having a scan with contrast, show up two hours before your appointment. My appointment is for 0845. "Oh dear, we'll have to fix that," she says. "That's only for abdominal scans." She tells me to take a seat, and she'll see how quickly they can fit me in. As it's first thing, it shouldn't be a big problem.

0710: Someone says, "This area is always to hot!" to the receptionist, who agrees. I am secretly thrilled that my hot flash is not all flash.

0715: They send me over to the nursing station to get prepped for my scan. The very nice nurse gets me set up with an IV, and we chat for a little while about how my cancer was discovered, soda water (they got a fizz maker machine at Christmas), and the dye that they're going to use.

0720: The technician comes to collect me. He gets me ready for the dye by hooking me up to a long, coiled tube. I lie down on the CT scanner, with my head in a specialized headrest. He tells me that I'll be scanned, then dye, then I'll need to put my arms over my head, and we'll be done in 5 minutes. The scanner is a large ring, with a rapidly rotating set of emitters and sensors inside. It feels like it should be a wormhole generator on Stargate. The platform eases me in and out of the ring, asking me to hold my breath each time. This is challenging, since I don't have the physical machinery to seal off my airway (that's a big part of what vocal cords do). Holding your breath using your diaphragm is surprisingly difficult. The machine tells me when to inhale and exhale with icons and recordings. Most are clear and audible. A few are incomprehensible. The tech comes out from behind the glass a few times. First, it's to start the dye pumping. Then it's to tell me to put my arms over my head. I'm sure there was a recorded instruction to do this part, but I couldn't understand it. Then we're done. He takes out the IV and we chat while I clot. They don't have any tape for sensitive skin (latex in the glue is unpleasant) so I just hold the cotton padding on the puncture while we chat.

0730: I'm up and out. I shoulder my backpack and immediately start to bleed from my elbow puncture. I head back to the scanning room, but he's not there. I grab some cotton bandages from the counter and clean up while walking to the bathroom. A few minutes later I'm set, and head out again.

0735: I get to the lobby near the parking. Time to get my hoodie on.

0740: I pay my parking and head home. The traffic is a lot more intense now than it was when I was driving in!

0810: I'm home! Happy wiggles from the boys.

1000: Now I'm sitting in the blue chair with Jake in my lap, waiting for it to be 10:00 so I can eat (have to wait an hour after taking the thyroid meds). I would get up to eat, but I'm falling asleep, and Jake is out cold, so a nap before brunch.

1100: Didn't sleep, though I did doze a bit while reading SGU Forums. Got up to make lunch - tuna melts. Watch Aziz while making and eating lunch.

1200: Take the boys on a long walk, to do some Ingress in parts of the neighbourhood I don't get to that often. My old men and I are well matched for pace at this point: sloooooow.

1330: Home after walks, I return to the blue chair. I'm confident that I'll be snoring if I could still produce that sound. I'll let you imagine me drooling as I sleep instead.

1500: Awaken in the chair - good news, I didn't sleepwalk or get abducted. Start reading SGU again. Respond to a couple threads.

1715: Copy this post from Facebook post this morning, and extend it with up-to-the-minute information.

1719: Hit preview and proofread.

1720: Post.

1721: Discover I have posted to the Star Wars Episode VII thread like a boss.

1722: Post to the correct thread.
Title: Re: Cancer, Living With
Post by: brilligtove on February 04, 2016, 05:32:25 PM
 
  Sounds like you are in the shit worse than me Brilligtov.  I had a blog about my cancer for a while but I stopped because it makes people uncomfortable talking about it.  The never ending narrative of daily insults to the body makes for painful reading.  I can speak from personal experience that cancer fucks you up. 
  I am six years post allogeneic stem cell transplant for Leukemia. The mortality curve for my particular cytogenetics was so steep I am more than lucky to be alive. Daily improvements are so infinitesimal that you only notice after years.  My big strapping body dissolved during chemotherapy into a profoundly weak condition.  In spite of a lot of pain I can now work about four or five hours now without needing to catch up resting the next day.  I wear a fitbit to measure activity.  I went over ten thousand steps a few weeks back and that was the day I fell on my face and battered myself pretty bad.  I start to stumble after about four hours on my feet.  If I go too far, I need pain meds at night so my feet shut up and let me sleep.  If I take pain meds in the daytime I can walk more but I still pay with more recovery time. 
  All the while there is an anxiety about the cancer coming back.  You are never "cured". 
  I do find cancer biology to be very fascinating.

Hey, Crash. I either missed your post or thought I'd respond later and never did. Sorry for the delay.

It sounds like your cancer is/was a lot more pervasive and invasive than mine has been. I hope you stay cancer free. I am a little anxious about getting the results of my scans, but don't have any reason to believe that they'll find anything.

I'm at a point now where I can do a full day of knowledge work - but generally not two in a row. I've put on weight again, but it's not muscle. :( Hard to build muscle when a workout wrecks you for the next day. I've cut down on my eating again, which will help. (I fell back into old habits when I got my taste buds back in December.)

I was updating every day until the end of my chemo and radiation treatments on Nov 20. The month after that was awful, full of blood and pain, and I didn't have it in me to post updates at the time. In retrospect I should have taken a picture every day and posted that without comment. Live and learn, I guess. Now I'm posting for events and changes. I was getting tired of my own voice; I imagine that a lot of others were too.


Title: Re: Cancer, Living With
Post by: Andrew Clunn on February 04, 2016, 11:00:13 PM
Following your recovery is worth the 1¢ per update.
Title: Re: Cancer, Living With
Post by: brilligtove on February 04, 2016, 11:04:40 PM
Following your recovery is worth the 1¢ per update.

If only there was a way to transfer that penny from you to me...

;)
Title: Re: Cancer, Living With
Post by: Andrew Clunn on February 04, 2016, 11:09:26 PM
Following your recovery is worth the 1¢ per update.

If only there was a way to transfer that penny from you to me...

;)

And thus the new crypto currency "Give a shitcoin" was born.
Title: Re: Cancer, Living With
Post by: brilligtove on February 04, 2016, 11:16:35 PM
Following your recovery is worth the 1¢ per update.

If only there was a way to transfer that penny from you to me...

;)

And thus the new crypto currency "Give a shitcoin" was born.

Now you have me laughing in a good way.

Yes yes, I know, snark, yes, but I have to be true to our relationship, right?

Srsly, laughing out loud for reals in my basement. My dogs are concerned for my mental health.
Title: Re: Cancer, Living With
Post by: Crash on February 05, 2016, 01:24:04 PM
No need to reply at all Brilligtove.  The living with 'cancer' heading was something I had a little experience with. It's kind of like being a member of a brotherhood of something.  I hope I didn't crash your thread.  Cancer is one of my most favorite topics now.  The pharmacology is astounding in the complexity.  I used to tell the smart kids to go for astrophysics but now I suggest microbiology, oncology and pharmacology. 
  Your day at the clinic came with the usual cliffhanger.   The wait for the scan results is the definition of anxiety. 
  I got my unofficial therapy dogs right here too.  Having them is always good for a little comedy relief. 
Title: Re: Cancer, Living With
Post by: brilligtove on February 05, 2016, 02:28:08 PM
No need to reply at all Brilligtove.  The living with 'cancer' heading was something I had a little experience with. It's kind of like being a member of a brotherhood of something.  I hope I didn't crash your thread.  Cancer is one of my most favorite topics now.  The pharmacology is astounding in the complexity.  I used to tell the smart kids to go for astrophysics but now I suggest microbiology, oncology and pharmacology. 
  Your day at the clinic came with the usual cliffhanger.   The wait for the scan results is the definition of anxiety. 
  I got my unofficial therapy dogs right here too.  Having them is always good for a little comedy relief.

Aside from adding your screen name to the thread, no other crashing of the thread has occurred. :)

Yeah, the cliffhangers are always a pain. I'm reasonably good at not dwelling on them, but I would prefer results NOW NOW NOW.

The complexities of biology in general have always overwhelmed me (since grade school). I could handle gross anatomy and kinesthetics and genetics, maybe because those feel more like physics and programming than a lot of the rest of the field. I do find it fascinating that biology is still making huge new discoveries and uncovering entire domains to explore. A couple years ago no one was talking about the microbiome, for example. A few years before that mapping the genome was discussed like it was the end of all biology knowledge but wait oops what's this proteome thing shit this is complex. Now with CRISPR in the works I expect we'll be seeing some astoninshing new creatures very soon.
Title: Re: Cancer, Living With
Post by: Friendly Angel on February 05, 2016, 03:01:21 PM
Aside from adding your screen name to the thread, no other crashing of the thread has occurred. :)

I figure this is your blog thread and I haven't contributed out of respect... but I do think it's important to understand what cancer life is like and I'm getting some perspective from your updates - thanks.

Here's a question some questions - what does your "blowhole" feel like?  Do you gag or anything when you clean it out?  Is it ticklish?  Is what you're cleaning like snot?  - or just dirt from the air that you can't filter through your nose anymore?  What do you have to be careful about it with?  What if a bug flew/crawled in there?

And if you wanted to be a Jeopardy contestant... what accommodation would you need to be competitive?
Title: Re: Cancer, Living With
Post by: Mr. Beagle on February 05, 2016, 03:30:07 PM
Mrs. Beagle is now at 22 years on one lung after proving that young women who have never smoked can develop a malignant lung tumor. I am still pissed at the doctor who treated her for asthma for a couple years until it was too late to save the lung, but on the other hand, who would dig deep to look for lung cancer in a young, non-smoking woman. (That task fell to a rookie fill-in female doc who was really smart).

It is not easy, and I don't know what the alternative is, but in Mrs. Beagle and Brilligtove I see what I can only call "courage under fire," in taking on the "manxome foe."

Survival does have its fun moments. Even though she always details her history, new doctors and nurses routinely get flummoxed trying to find lung sounds from the missing lung and heart sounds from the heart, which has shifted well out of position. She once had an EKG technician near tears because she could not get her stick-on probes to register signals properly.


Title: Re: Cancer, Living With
Post by: brilligtove on February 05, 2016, 03:37:53 PM
Aside from adding your screen name to the thread, no other crashing of the thread has occurred. :)

I figure this is your blog thread and I haven't contributed out of respect... but I do think it's important to understand what cancer life is like and I'm getting some perspective from your updates - thanks.

This is a thread I started to talk about my experiences, and anyone is welcome to comment. I am like discussion!

what does your "blowhole" feel like?

To my fingers my stoma (blowhole) feels like a hard ring of skin, pulled tight against a tendon (or similar strong tissue). In terms of the experience of having a stoma, that's harder to describe. Normally I don't feel it at all, just like you don't feel your left nostril until you are specifically made aware of it like I just did. If you press your thumb down in the hollow between your collarbones that's really what it feels like for me when I occlude (block) it to talk. The top of the hole is numb (the nerves on the front of my neck were severed during the neck dissection) but the bottom can sort of have a mild ache at times. That ache is like if you pressed that spot a little too hard for a little too long. Not painful or tender - just a sort of ache-ish feeling.

My stoma is a boundary between skin and mucosa. The mucosa is very sensitive to any touch or disturbance. I have a small silicone implant (TEP) that sits inside a fistula between my esophagus and my trachea. This allows me to produce a voice when I exhale and block my blowhole (occulde my stoma). My TEP is quite high up in my stoma, which is good - makes it easy to maintain - but my stoma is also quite shallow. Some folks have a good 360° ring that looks like a cave; mine is more of a teardrop shape with the top mucosa just turning into skin, with no particular rim or ring. This makes it very easy for me to poke the mucosa, or to poke the TEP. In either case there will be coughing. Lots of coughing.

Do you gag or anything when you clean it out?

I don't gag when I clean it, but I do cough. (I gag when I brush my teeth, when I scrape my tongue, and when my mouth is too dry and my throat feels like it's sticking to itself.) Cleaning consists of a few different activities. Externally, I have to peel off the dried mucus that collects around the outside of the stoma. If I'm wearing a baseplate (sticker that surrounds the stoma and can hold an HME (Heat and Moister Exchange button that I press to speak)) the goo collects in a ring and dries out. It also sticks to my skin something fierce. There is a sweet spot of dryness where the goo is soft enough to roll onto my pipecleaner (yes, I use a special pipecleaner to clean my TEP and the blowhole) and then peel off in a big clump. If it's quite soft and wet I can just roll it on to the pipecleaner and rinse it off in the sink. If it's too dry I have to wet it with saline and let it soak. If it's too wet I can just blow real hard and have it fling out all over the mirror or (ideally) into the sink. If I'm not wearing a baseplate I can clean it with a damp facecloth or cotton pad as well.

Is it ticklish?

Not ticklish, as such. The nerves in my neck that were not cut are screwed up and miswired, so the area that is in the top right quadrant above my stoma registers like it's inside my trachea. Poking, pulling, or rubbing on that spot triggers severe coughing, just like getting food in your airway does. I'm very slowly getting better at minimizing that response, but I don't know if that area will ever feel like external tissue. Neuroplasticity, FTW!

Is what you're cleaning like snot? 

No - it IS snot. I have to irrigate my lungs frequently - that is, shoot in up to 10ml of saline, straight down the windpipe. I have to do this because my 'lung secretions' dry out quickly (no nose to do the humidification and heating when I inhale). When they dry, they are snot. When snot dries is it boogers. You don't want boogers inside your lungs. Also, people like me can get mucus plugs that block our airway completely. That's a death sentence, so keeping irrigated is rather important. (This is a 'careful about' bit, obvs.)

or just dirt from the air that you can't filter through your nose anymore? 

Snot collects dirt and such, and flushes it out of your airway. In a normal neck this is brought up into the mouth and swallowed into the stomach. I can't do that, so I have to blow my blowhole pretty frequently to hork out the goo.

It's quite a sight, let me tell you.

What do you have to be careful about it with?

Lots - but I'm now running late for a play date for my dogs, and have to go. I'll pick this up later.


Good questions!
Title: Re: Cancer, Living With
Post by: brilligtove on February 05, 2016, 05:23:22 PM
Mrs. Beagle is now at 22 years on one lung after proving that young women who have never smoked can develop a malignant lung tumor. I am still pissed at the doctor who treated her for asthma for a couple years until it was too late to save the lung, but on the other hand, who would dig deep to look for lung cancer in a young, non-smoking woman. (That task fell to a rookie fill-in female doc who was really smart).

It is not easy, and I don't know what the alternative is, but in Mrs. Beagle and Brilligtove I see what I can only call "courage under fire," in taking on the "manxome foe."

Survival does have its fun moments. Even though she always details her history, new doctors and nurses routinely get flummoxed trying to find lung sounds from the missing lung and heart sounds from the heart, which has shifted well out of position. She once had an EKG technician near tears because she could not get her stick-on probes to register signals properly.

You gotta laugh where you can, right?

I have to be particularly careful with any surgeries or procedures where I need O2 or other gasses administered. The teams automatically and inevitably put the mask over mouth and nose, where they do no good. Also, well meaning but uneducated medical personel have been known to pull out the TEP because "what's that I see there?" which has the effect of opening the fistula between my trachea and esophagus. Since reflux of stomach acid is very very common for laryees like me, this means dumping stomach acid directly into my lungs. So bad news, yes?
Title: Re: Cancer, Living With
Post by: brilligtove on February 05, 2016, 05:30:06 PM
And continuing on the 'what do you have to be careful with' answers...



...that's what comes to mind, at least.
Title: Re: Cancer, Living With
Post by: lonely moa on February 05, 2016, 11:35:07 PM
I'll never think of  xerostomia, loss of molars and one sternocleidomastoid as a hassle ever again. 

Thanks for your frank explanation.
Title: Re: Cancer, Living With
Post by: brilligtove on February 06, 2016, 10:12:06 AM
I'll never think of  xerostomia, loss of molars and one sternocleidomastoid as a hassle ever again. 

Thanks for your frank explanation.

Hey - suffering is not a competition. We play the cards we're dealt.
Title: Re: Cancer, Living With
Post by: brilligtove on February 06, 2016, 01:25:46 PM
Oh - another thing I have to watch out for - I can't expose my neck to direct sunlight. That's where I had my radiation, and apparantly my skin will no react well.
Title: Re: Cancer, Living With
Post by: lonely moa on February 07, 2016, 12:23:16 AM
Oh - another thing I have to watch out for - I can't expose my neck to direct sunlight. That's where I had my radiation, and apparantly my skin will no react well.

Did the radio kill your beard?  I was never able to grow much of a beard but now I have to shave about half as much on the affected side.  After a few days of not shaving it looks pretty stupid to me.  The sun effect seemed to go away after a while. 

Those third degree burns inside one's throat hurt.  TGFM.
Title: Re: Cancer, Living With
Post by: brilligtove on February 07, 2016, 06:05:31 AM
My mustache is the only hair growing normally. It looks awful. Neck is bald, starting at my chin line. Cheeks have sparse, slow growing strands. No more beards for this guy.

What is tgfm?
Title: Re: Cancer, Living With
Post by: lonely moa on February 07, 2016, 12:15:33 PM
Thank God for morphine.
Title: Re: Cancer, Living With
Post by: brilligtove on February 16, 2016, 01:30:00 PM
I think I wasn't clear that this thread is for anyone living with cancer - in yourself, your family, your friends. I was re-reading my posts (as prompted by some New Confessions) and realized that this intention and the words I actually used to express it did not match up terribly well.

In other news: 2016-02-16 Radiology Update

I just met up with my RadOnc Doctor. Nice guy. He said there’s no indications of any troubles in my CT scans from a couple weeks ago.

*whew*

I’ll be seeing my surgeon in three months, and Dr. RadOnc in six. I’ll have new CT scans when I see Dr. RadOnc, as I have nodules in my lungs (since before this all started). They haven’t changed in any way, but he wants to keep an eye on them. He’s also making an appointment for me with the lymphedema clinic here at Sunnybrook. I’d like to get rid of this frog-chin. They may just refer me to a private clinic, but we’ll steel.

Oh – and I’ll have an update for you this afternoon, as I’m seeing the dermatology clinic here at Sunnybrook. My dermatitis (eczema) has come back hard on my forehead, and I have a bunch of little itch patches on my neck. Dr. RadOnc doesn’t think the itchy patches are cancerous, but they’re worth checking out. My family GP, Dr. T. set that up for me, which was great.

Right. The drive here was awful, and I’m sure the drive home will be awful too. It normally takes 30 minutes; today it was 75. I was supposed to go to my daughter’s classroom for parental observation day before seeing Dr. RadOnc, but didn’t leave enough time to get there. I mean I left the house with 30 minutes to get to the school – normally a 15 minute drive. That took 35 minutes – and that’s before finding a place to park and getting into the class. I missed my window. :(

I’ll see if I can reschedule.

FBAEW.

Be well.

--BT
Title: Re: Cancer, Living With
Post by: SnarlPatrick on February 17, 2016, 02:40:41 AM
Hey guys. I've been ignoring this thread... and feeling a bit guilty about it, because frankly, this stuff scares the shit out of me. But Brill, its always worthwhile to read your comments.

In high school, my best friend's mother passed and it just destroyed him. And then my mother get one mastectomy, and then the other, then lymphedema. But the feelings were complicated by her being a malignant narcissist. Then my aunt went to Texas to die in secrecy in hospice, of Vaginal cancer, that if she'd gone to real doctors instead of quacks, they might have been able to save her. We found out 6 weeks after she died, her friends had kept it secret until she was cremated, since she didn't trust my mother to respect her wishes. Anyway...

You seem like a doctor's dream patient. Your strength of character is a big asset. Moa, I'm sorry you're in pain. I'm pulling for both you guys.
Title: Re: Cancer, Living With
Post by: brilligtove on February 17, 2016, 06:21:39 AM
Thanks, SnarlPatrick. I hope you never have to deal with any of this again.
Title: Re: Cancer, Living With
Post by: Friendly Angel on February 17, 2016, 12:00:47 PM
How do you decide and evaluate how much of your experience to talk about with other people?  I see people with cancer who are very open and maybe talk too much about it, and people who I didn't even know had cancer because they just kept quiet about it, and everybody in between.

Obviously you've got to tailor your discussion to your audience - but I also don't know how to tell folks how much to tell me - frequently these are acquaintances and colleagues and not close friends. 

1.  A relatively close colleague had esophogus cancer and I didn't know until well into the process.  I knew he'd been having some health problems but didn't know what and I didn't ask.  Then when he told me, he said that his oncologist thought he was terminal.  Then he died about a month later even though he had been at work a couple days earlier.

2.  A not so close colleague started showing up to work with a head scarf and it was obvious to everyone that she had some kind of cancer and she was dealing with it in her own way.  After a year she sent out an announcement that she had breast cancer and it was tough but now she's essentially 100% back to normal.


I guess my question is kind of about talking about medical issues in general - with cancer being an extreme issue.  Tell me more, but I don't want to pry, and I'm not really sure how much I really want to hear.
Title: Re: Cancer, Living With
Post by: Drunken Idaho on February 17, 2016, 12:09:03 PM
I guess my question is kind of about talking about medical issues in general - with cancer being an extreme issue.  Tell me more, but I don't want to pry, and I'm not really sure how much I really want to hear.

Yeah, that's a pretty complex issue... wanting to go on as per normal vs. wanting people to understand the difficulties vs. knowing that some people (but you're not sure who) are wanting and able to share the burden. I imagine this is a very tough thing.

Brilligtove, glad you're sharing here, both on account of us wanting to be "in the know" and in some hope that you receive some relief. Are you able to share this much with people in person, or is it a little easier in this setting?
Title: Re: Cancer, Living With
Post by: lonely moa on February 18, 2016, 12:58:50 AM
Cancer survivors often sort of click with each other. 

I've only been with a crowd of people with cancer (about two dozen at sort of a 10 day cancer retreat) and it was pretty cool.  We had excellent moderators and lecturers and lots to do.  I think some of the participants didn't see out the year, but I think everyone got a lot out of it.

BTW, I'm not in pain.  A bit of constant discomfort  but, I'm not really limited by the treatment.  I/m pretty sure I'll be on the Queen's payroll next year... so cheers!
Title: Re: Cancer, Living With
Post by: brilligtove on February 18, 2016, 10:03:27 AM
(click to show/hide)

How do you decide and evaluate how much of your experience to talk about with other people?  I see people with cancer who are very open and maybe talk too much about it, and people who I didn't even know had cancer because they just kept quiet about it, and everybody in between.

My logic works like this:

Taken together, we have a situation where there are a vast number of people with cancer, many who want to know more, and very few who have both the desire or ability to discuss it. I happen to be at the intersection of these factors. Combined with my desire to make a positive difference, talking about my experiences seemed like the right thing to do. I really have very few secrets, and most of these are related to personal security, not personal privacy (bank account passwords and the like). Pretty much everything else is an open book as far as I'm concerned.

This means I talk about my experiences a vividly and viscerally as I can. In my writing I think of my audience as a person who has never had a serious illness or been close to someone with one. I try to find ways to help that person get a sense of the experience, sometimes at the expense of strict record keeping: I have to go poetic to explain what a stoma feels like, for example. If you don't have a blowhole there is very little common ground to draw on, so metaphors become necessary.

Obviously you've got to tailor your discussion to your audience - but I also don't know how to tell folks how much to tell me - frequently these are acquaintances and colleagues and not close friends. 

I've gotten better at tailoring over the last six months. If someone on the street asks if I have a sore throat, I may not shock the crap out of them with "No, two professional knife wielding megalomaniacs cut my throat," or "Cancer." I might say, "No pain - I had surgery," instead. In terms of actual subject matter, well, I talk to my wife before I post anything that involves her directly - like rediscovering my libido after chemo. In general, if I'm going to post about an interaction with someone I either anonymize them (Dr. RadOnc, Nurse Lungjabber, etc.) or I talk to them about what I'm going to say before I say it. My daughter's moms and I have talked about this quite a bit, and have found what seems to be a pretty good balance at this point.

I guess my question is kind of about talking about medical issues in general - with cancer being an extreme issue.  Tell me more, but I don't want to pry, and I'm not really sure how much I really want to hear.

I find most people are honestly curious and ashamed by their curiousity - as if their desire to understand what I'm going through diminishes me in some way. That emotional response may be normal for the questioner and the questioned - but I don't experience it. Within the limits set out above, if you're asking questions from a position of curiousity or concern, I'm going to answer as clearly as I can.

There are also people who seem to think suffering is a competition. I don't mean the simple, "I guess I can't complain about [bad thing] after hearing about your [worse thing]." That's just an expression people use when they have their shit put in perspective. That asshole at work really can make your day a terrible place to live; confronting an existential threat makes it easier to ignore or rise above that kind of shit. No, I'm talking about the person who tries to top my story because their suffering is of a higher quality or deeper meaning than mine. Those people get no mercy from me. Thankfully they are rare enough that I haven't had one who deserved the big guns yet: "Wow. I'm really glad you've had it so bad. You really seem to enjoy suffering. Good for you!" I have punctured a few by talking about how little I have actually suffered. Sure, this has been pretty awful at times. And yet I'm essentially healthy, likely to live a long and productive life, have a wonderful family, and the pain - while seriously unpleasant - was never unbearable. There are dark days, but no depression (so far), so overall I'm about as satisfied with life as I was before this started.

Most of them don't know how to deal with that.

Yeah, that's a pretty complex issue... wanting to go on as per normal vs. wanting people to understand the difficulties vs. knowing that some people (but you're not sure who) are wanting and able to share the burden. I imagine this is a very tough thing.

Brilligtove, glad you're sharing here, both on account of us wanting to be "in the know" and in some hope that you receive some relief. Are you able to share this much with people in person, or is it a little easier in this setting?

From last to first... Writing is significantly harder than talking under most circumstances, even with my reconstructed throat and kludged-together vocal apparatus - but that's just the mechanics of writing vs. talking. In terms of subject matter, I don't find any particular distinction. There are other topics that I reserve for in-person or voice-only: the state of my marriage, for example, is not something you're going to find in a blog post.

The act of expressing my experiences helps me pin them down and understand them; that can bring significant relief on those dark days, or help me find the humour in the gross, gooey, or teeth-grinding situations. The responses I get can be very uplifting too - especially when someone talks about doing something nice for someone, because it's nice, and they're someone. There are people on this forum who have made me cry by describing their simple acts of kindness.

Overall I don't worry much about "that was too much" from the people who read my writing. If I can I try to offer warnings about the material, and rarely post images that might turn the stomach of someone caught unawares. You can stop reading; you can't unsee a picture. Well, not without immediate percussive cranial therapy or application of electrical current to the brain, an who has an ECT kit or ACME Headmallet handy when they're browsing Facebook? I mean if you're on 4chan or Reddit, sure, you have the electrodes on, the belt in your mouth, and one hand on the button.* But that's not where my writing lives, so there you go.



* For advance browsing professionals, the button may be a foot operated dead-man's switch rather than a hand-held device. Think about it. One hand on the mouse, one hand on... other tasks, so unless you're name is Beeblebrox you're gonna be one hand short for the button.
Title: Re: Cancer, Living With
Post by: Mr. Beagle on February 18, 2016, 10:41:18 AM
I applaud your articulate, thoughtful, and open approach to your experiences, Brilligtove.

My spouse, who lost a lung to cancer and came very close to death from after-effects 22 years ago, has taken the opposite approach. She rarely talks about it, and I sometimes have to urge her to tell her story, especially when people are insensitive (such as, "I don't know why you need to go to Florida in the winter; it's not that cold here"). She covers so well (through intentional practice) for her reduced lung capacity that many people have no idea and others often forget.

I understand her reluctance to talk about it, and desire for privacy, but others in similar situations can benefit from her experiences.
Title: Re: Cancer, Living With
Post by: brilligtove on February 18, 2016, 10:53:12 PM
Thanks for the kudos. I know a lot of cancer survivors just want to put it behind them. I'm not sure it's even a conscious desire to distance oneself. It's more like all that crap was so huge that it's kind of mythic, and mythic adventures happen to other people, and I'm just dealing with life like everyone does.
Title: Re: Cancer, Living With
Post by: brilligtove on February 25, 2016, 04:32:23 PM
2016-02-25 Lymphedema and Vocalizations Update

I was at Sunnybrook today for a short education session about lymphedema. I learned a little bit, but mostly knew the materials covered. I did find out that the appointment I'm supposed to go to tomorrow is incorrect, however. The doctor will be calling me to let me know when she can fit me in. I do want to be rid of this frog neck.

On a happier note, I am beginning to be able to whistle a little bit. It's quite challenging, since I have to push air through my reconstructed throat without my throat vibrating. I get good vibrations even at very low airflow, so whistling is tricky.

Good enough for Walter, though. Even Jake paid some attention.

http://youtu.be/z0SSAb0f5fA

Oh - one more thing. When I was cleaning my stoma today I saw what appeared to be a crack or cut in my TEP, but when I leaned in to get a better look I couldn't find the mark. Then I shone a light (from my phone) down the hole and discovered that I had a blue stitch poking out of the flesh inside my trachea. After some thought I decided to see how firmly embedded it was. If it was just hanging on it would be falling into my lungs sometime soon; taking tweezers to it now seemed reasonable. I'm glad I did. It was just barely embedded. If there had been any resistance at all I would have stopped and made an appointment to see someone. It came out easily with the tweezers though.

Be well.
Title: Re: Cancer, Living With
Post by: brilligtove on March 09, 2016, 10:26:26 AM
Two of my favorite topics together in one study. Who could ask for more?

Nothing to sneeze at -- battling mucus to beat cancer (http://www.eurekalert.org/pub_releases/2016-03/uoo-nts030816.php)
New OU discovery may help thwart pancreatic cancer

Quote
Oklahoma City (March 8, 2016) What do cancer cells and a runny nose have in common? The answer is mucus; and researchers at the Stephenson Cancer Center at the University of Oklahoma have shown it may hold the key to making cancer treatment better.

Most of us know about the thick, gooey stuff we blow from our noses when we have a cold. In that instance, mucus protects the normal tissue in the nose from drying out and helps the body recognize and fight off invaders like bacteria and viruses.

Mucus also has been shown to play a role in cancer's resistance to chemotherapy drugs, shielding cancer cells from the very drugs intended to kill them, thereby allowing the cancer cells to grow and multiply rapidly. Now, researchers at the Stephenson Cancer Center have identified a way to potentially break through that defense when it comes to pancreatic cancer.

Title: Re: Cancer, Living With
Post by: brilligtove on March 20, 2016, 09:52:23 PM
2016-03-20 I Am A Travelling Man

My sister is hanging out at the gate with her son, while I have retired to the bar to have a beer and some pizza and destress my distress at getting through security. We're on our way to Trinidad. We were all there a year ago for march break (with Livé). This year it's rather a different trip. Obviously, it would have been more fun if I could bring Livé this year, but she is in school now. Also, I didn't have a hole in my neck last year.

Different.

As an example, take my checklist. I have never had a checklist for travel before, so that's the first change. Then there's the fact that it's yoooge:

Basics


Elastics


Portable Tracheostomy Kit


4 Day Travel Kit


Then there's the clothes, wedge pillow (I have to sleep on an incline) and normal toiletries like a razor and toothbrush.

It turned out security was a breeze. I showed my letter to the agent, but she said it wouldn't be a problem carrying my saline. The agent at the scanner console sent my bag through with no issues.

Gate announcement happening - gotta go.
Title: Re: Cancer, Living With
Post by: AQB24712 on March 20, 2016, 09:54:44 PM
Whew, that's quite a list.  Have a wonderful visit with your mama!
Title: Re: Cancer, Living With
Post by: brilligtove on March 21, 2016, 07:43:58 AM
At least most of the stuff on my list is fairly light. It's bulky, but not a huge burden.

Mom seems to be doing pretty well. The AFib is still there, but it looks like it's starting to get under control. I'm sitting in the gallery of the family home right now, sipping water and cruisin' the net. :)

2016-03-21 0745h Travel Update

Well, that was relatively painless.

I went through the security check ahead of Joy and Mateo, and had no questions or special searches, despite all the saline I have.  I was "randomly selected" to be screened for explosives - just like I am every time - but that wasn't a surprise.

Mateo was desperately excited about being on the plane, bouncing around and exploring everything. He kept asking, "Are we flying?" and took great delight in unbuckling and buckling his seatbelt. He REALLY wanted to kneel at the window to watch takeoff, but Joy was mostly able to keep his butt in his seat. He's tall enough to see out the window, barely.

We took off on time at 11PM . I dozed on and off until about 3. Mateo was stretched out between Joy and I for much of that time. It took a while for him to wake up enough to sit up for landing, but that was ok once he was aware.

On the hole-in-neck-flying front, it wasn't too bad. I had a high-moisture HME in, and was able to use my larybutton successfully all day. That's a big change: I couldn't use it effectively just a few months ago, but now I can speak pretty clearly. It isn't good for long conversations or really loud environments, but it was really convenient for traveling. My skin on my I neck really needed a break from baseplates too, so the timing was perfect. The itching is subsiding and the beginnings of a rash have already faded. I suspect part of my newfound success with the button is that I have a high-flow TEP now.

In any case, when I woke up at 3AM my biggest concern was that I'd forgotten to take out my contacts. This was followed by somewhat labored breathing through the somewhat clogged HME. I dealt with the contacts and irrigated my lungs - sometimes a squirt of cool saline feels VERY good - and then returned to my seat.

Immigration and customs were easy, especially since Joy was able to do most of the talking. Our cousin's husband, Steve, met us as we stepped out into the humid air.

I'm in the back seat of the truck, on the way to "grampa Sammy's house" in San Fernando. Mom is there right now, and we'll be staying in San'do for a few days before going to the beach. It is 0556h and the sun is about to crest the horizon.

Everything is green!

Oh - I forgot to take my thyroid medication before eating breakfast. It seems I need to set some alarms while travelling, since my normal routines are messed up. I'll take in a few hours, once my stomach is mostly empty again. It's going to be interesting to see how I deal with the heat.
Title: Re: Cancer, Living With
Post by: brilligtove on March 24, 2016, 06:08:36 PM
https://youtu.be/2XV3UuPXkc0

2016-03-24 Travelog - The Beach

On the one hand I got to sit in the ocean and got a great video of what happens when an unexpectedly large wave crashes into you.

On the other hand I ejected my only larybutton, which now lives in the depths of the Atlantic. (I have lots of other stoma covers and the salt air is pretty easy on the lungs regardless.)

So enjoy the video, I guess. It was shot and edited on my Nexus 6P, with music added on YouTube, so forgive the crude edits.
Title: Re: Cancer, Living With
Post by: Calinthalus on March 24, 2016, 08:00:37 PM
As a survivor of a much easier cancer to beat I want to send a great big "Fuck Cancer" your way.  I'm not a writer.  While I was in treatment I was sleeping 16+ hour days and was lucky to drink three cans of Ensure a day.  I honestly didn't have the drive to do much but sit in the chair with the spike in my chest while they pumped in the chemo and old people watched TVLand reruns next to me.  I couldn't even focus enough to read.  I have no idea how you're managing to write all this down.  I got my clear PET almost a year ago (shortly after my heart attack) and I'm just now feeling social enough to post here.


Keep living the life man.
Title: Re: Cancer, Living With
Post by: brilligtove on March 24, 2016, 10:52:03 PM
Calinthalus, thank you - and you do me too much credit. Somebody ends up at the far end of the bell curve on this shit, and I happened got luck out on almost all of it (at least, all of it after the holy shit your body is staging a rebellion and wants to kill you part).

My energy budget is now big enough that I almost feel like a Canadian (roughly 70¢ on the dollar) compared to where I was before all this shit started. Again, I have been lucky. No significant complications on the way was one thing; having unintentionally trained for dealing with cancer - and this specific cancer - is yet another level of irony layered on to my life. (Seriously, I think I'm ferromagnetic now. That much irony).

I hope your energy budget grows, and is not indexed to GDP. ;)
Title: Re: Cancer, Living With
Post by: brilligtove on March 31, 2016, 07:44:55 PM
2016-03-30 Travelog and Update

This trip has gone pretty well from a laryee point of view. It's hot, hazy and humid today, so I'm going bare - no HME or related paraphernalia. I am wearing a scarf, but that's just to keep basic dust an such out. Trinidad gets a lot of dust from the Sahara, and I know that tweaks my allergies; no sneezing this year - yeah, neck breathers! - but my skin is more sensitive than usual. Reactin seems to be helping, though.

(http://i.imgur.com/rZGaLtd.jpg)

In other news, I found a pair of my dad's reading glasses in the glovebox of our family car here in TT. I've been meaning to get a pair a lot like this, with thin frames. The magnification is actually a bit strong for me, but they're working great so far. Almost five and a half years later I inherit something unexpected. :( :)

On another note, I've been thinking about the intersection of cancer, autoimmune diseases, the immune system, synthetic biology, modern gene-editing (CRISPR CAS-9), encryption (RSA 256, elliptic curves, perfect forward secrecy, iOS / iPhone secure enclaves), secure authenticated communications (digital signatures, public key crypto, Diffe-Hellman Key Exchange).

Don't worry if most of that was gobbledygook. The important part Is that I found this really interesting paper that looks at The Hallmarks of Cancer - the original six published in 2000, plus four more from 2011 / 2014. The paper linked below is a long read and gets into a lot of complex aspects of biology, but the opening paragraphs of each section are pretty readable. I took no bio in highschool and got 50% in the one course I took at Uni because my prof knew I'd been screwed by the administration, who told me I didn't need to take any bio courses to get my degree. But that's a tale for another time. What I'm saying is, the ten key ideas are pretty accessible.

The Hallmarks of Cancer: http://www.sciencedirect.com/science/article/pii/S0092867411001279

Wikipedia Article on the Same: https://en.wikipedia.org/wiki/The_Hallmarks_of_Cancer (Wikipedia covers 8 of the Hallmarks listed in the Cell journal article.)

Last but not least, I was contacted a day or two ago by a person I know through playing Ingress. A friend of her's was just coming out of the OR with a trache tube. They'd had trouble ventilating her, and the flu was doing a number on her lungs - enough that she needed help breathing.

One simple, quick bit of advice I gave was to make a message board ASAP. The pics below are just examples based on my experience and thinking about what others might need. Later versions included phrases like, "I can answer ONE QUESTION AT A TIME," and "This will go faster if you ask YES/NO questions," and "I can't write while you're reading over my shoulder" and "Relax your neck and let me finish," and...

Well, there were a few times I got a bit testy, clearly. :)

In any case, if you know someone who is unable to speak while in hospital for whatever reason, make them a finger-pointing sized sheet of paper with at least:

-YES
-NO
-My pain is this many fingers out of ten. (Hold up fingers)
-My pain is worst in my (Stick figure, with labels for front and back of body. Be specific about locations if they are relevant.)

Also very helpful:
-I don't understand.
-I don't know.
-Slow down.
-Please let me answer without finishing my thoughts.
-Thank you for being patient. I'm frustrated too.
-Please?
-Thank you.
-How are you?

(http://i.imgur.com/FReMzIw.jpg)

Be well.

--bt
Title: Re: Cancer, Living With
Post by: Calinthalus on March 31, 2016, 08:02:45 PM
I have to give a chuckle.  I have an oncologist's appointment tomorrow to discuss my last lab pull.  Now I'm sitting here reading the Wiki article on the Hallmarks.  I read "The Emperor of All Maladies" about a year before my diagnosis...and now in the back of my mind I start worrying that since I'm reading this now and I'm going to have bad news tomorrow.  Even us skeptics hear the call of omens and portents.


Anyway, thanks for the update and articles.  The scarf looks great.
Title: Re: Cancer, Living With
Post by: Friendly Angel on March 31, 2016, 08:39:57 PM
Trinidad gets a lot of dust from the Sahara, and I know that tweaks my allergies; no sneezing this year - yeah, neck breathers!

I didn't think about allergies.  I did read a thing about how laryees can force a little air through their nose to smell with a yawning kind of move... I guess you can just turn that off and not sense the pollen either?

Friends of mine are in Saint Lucia right now and they love it.

Scarf looks great.
Title: Re: Cancer, Living With
Post by: brilligtove on March 31, 2016, 10:08:18 PM
I have to give a chuckle.  I have an oncologist's appointment tomorrow to discuss my last lab pull.  Now I'm sitting here reading the Wiki article on the Hallmarks.  I read "The Emperor of All Maladies" about a year before my diagnosis...and now in the back of my mind I start worrying that since I'm reading this now and I'm going to have bad news tomorrow.  Even us skeptics hear the call of omens and portents.


Anyway, thanks for the update and articles.  The scarf looks great.

Thankfully with omens and portents past performance is no predictor of future results. :)

Trinidad gets a lot of dust from the Sahara, and I know that tweaks my allergies; no sneezing this year - yeah, neck breathers!

I didn't think about allergies.  I did read a thing about how laryees can force a little air through their nose to smell with a yawning kind of move... I guess you can just turn that off and not sense the pollen either?

It isn't that my sense of smell is turned off; it's that I have to consciously pull air through my nose by using my mouth as a bellows. Anyone can do this: seal off you lungs as if you are holding your breath (hold your breath if you need to, so you can feel the mechanism working). Close your jaw (teeth touching, lips touching). Open your jaw with your lips still touching.

Air will be sucked into the cavity of your mouth, and from the only available opening: your nose. If you plug your nose while you do this maneuver you'll fell the suction in your sinuses and on your tongue.

When I want to smell some cooking or some wine or some scotch it looks like I'm agressinve lay chewing gum.




Thanks both, re:scarf. I actually bought a bunch of new shirts here in TT. Unconsciously, they match the colours of scarves I have handy. My curry shirt is my fav; red is great. Purp-fusc-le is next. Black for the trip home. :)
Title: Re: Cancer, Living With
Post by: brilligtove on April 12, 2016, 02:04:12 PM
2016-04-12 Dermatology and SLP Update

I'm at Sunnybrook this afternoon for a follow up on my skin, and a checkup with my lovely SLP.

The skin thing is worse; the stoma and such is better.

I'm Not Bitchy, I'm Just Itchy.

About 2 months ago I started getting more rashes in traditional and in new places. My right hand has been terrible for the last decade, but now it's fine. For a few years I've had a patch of dermatitis at my hairline on the right side. It got worse, and I had new patches showing up on my eyelids and the back of my neck.* My GP sent me to a Sunnybrook dermatologist, since the clinic here will be aware of all my cancer history and treatment. The doctor gave me Hydroval cream to use twice a day, which I have done.

Now my entire body is itchy, I have new rashes on the outsides of my elbows (where they rest on the arms of a chair), the neck patches have spread, and my whole body is itching. I think that last part is a manifestation of my allergies. We'll see what the doctor has to say about it.

Going Nude

With all the itching going on, I haven't been using baseplates or HMEs for the last few weeks. Irrigating regularly, but just wearing a loose scarf and pressing my thumb over my stoma. It's been working reasonably well, and I've been pretty comfortable with no add-ons, so I'll keep working this way for a while. My voice is definitely clearer with a baseplate and HME, and I will order a ones LaryButton with my next shipment of saline and such. For now, though, I seem to be doing ok.

FBAEW.

___
* Some of this stuff is in other places too, but I don't want to bog this down with salacious details when implying them works just as well.
Title: Re: Cancer, Living With
Post by: brilligtove on April 12, 2016, 08:15:44 PM
2016-04-12 Post Appointments Update

Right. This post talks about bits that have uses that are potentially naughty, starting with the next paragraph. Skip down to the *****Naughty Bits END Here.***** line if you don't want to read about needles and knives being applied to nethers.

*****Naughty Bits START Here.*****

(click to show/hide)

*****Naughty Bits END Here.****

On the plus side, given the wrinkly nature of the biospied skin, even if I have scarring, it will be impossible to see. Oh wait, was that body pride peeking over? ;)

As noted in the Naughty Bits section, the reason for the biopsies is to be diligent and ensure that I don't have a rare cancer or other condition. The overwhelming odds are that it's just a persistent psoriasis. In keeping with that, I'm getting a new skin cream (betaderm) to deal with the skin that was improved by HydroVal, but not healed by it. Also, I'm on a prescription dose of Reactine to deal with the whole body itching and the irritation caused by wearing base plates.

That brings me to Joanne, my SLP. We had a lovely chat, and she helped me get set up with a larger larybutton than I was using. It was a touch uncomfortable to start with, but it's settled in nicely now. She warned me that if I lose this one to the ocean there will be consequences. I agreed. :) In six weeks we'll be meeting again to talk about going hands free, assuming we get my itching under control.

Right. That's all for now.

Hey, I did start this post by telling you it would include TMI, right? So the images stuck in your head are on YOU.
Title: Re: Cancer, Living With
Post by: Calinthalus on April 12, 2016, 08:28:38 PM
I hope the biopsies come out good.


******Naughtiness to follow
(click to show/hide)


******End.


You know, one thing I find funny now and I wonder if you get this too.  Don't you think it odd when nurses apologize about having to draw blood or some other needle stick.  Like I'm really going to notice one more needle stick after all this other stuff.  I always chuckle when they say it.




Again, good luck on the biopsies.  We're pulling for an abundance of caution.
Title: Re: Cancer, Living With
Post by: brilligtove on April 12, 2016, 10:40:30 PM
You made me LOL, which is tricky to do when your vocal apparatus has been removed. Good show!

Thanks for sharing, too. A nephew had the ballbreaker a few years ago. He is quite young and was engaged at the time. They did some preemptive banking and have a lovely son now.

It's astonishing how much more comfortable everyone is when a little cloth with a hole in it is used to isolate a bit of anatomy. I mean, clearly the dangly bits are still attached to me - but after the window-napkin is placed everyone is intensely relieved. I bet Germans and Scandinavians and Nords are not nearly as reliant on the cloth, what with their relative comfort with nudity (in my experience).

Maybe it's confirmation bias on my part, but I seem to have drawn a lot of really seriously good looking young doctors in my run through our system. I mean the far end of the bell curve was Dr. Srsly? My sister looked at him and said, "Is he a doctor or does he play one on TV? Because none of MY doctors look like THAT."

My mother and my wife and several old friends concur with my sister's assessment of his exceptional hotnitude. I'm not a competent judge of male beauty generally, so I'll go with the expert opinions. OTOH, I'm quite competent at objectifying women* and I have to say there appears to be an inverse relationship between the physical beauty of the medical practitioners I deal with and how comfortable the situation is.

Such is life.

___

* Let's be clear: if I was competent at objectifying men I'd totes be on that. I like pretty things, basically. Heck, I objectify birdsongs and oil slicks too. What I mean is, I'm saying I'm a horrible person, so you don't need to.
Title: Re: Cancer, Living With
Post by: Calinthalus on April 13, 2016, 05:45:00 AM
Congrats to your nephew on the successful banking.  I already had three kids (I was on the late end of the age span that particular cancer usually shows up) so we didn't bother.  I didn't really notice much for attractiveness for the most part.  I mean other than the nurse doing my sonogram...and the nurse that took care of me after my biopsy (I was fully opened up abdominaly so had to stay a couple of days); anyway, they were all rather average folks.  On the attractiveness scale anyway.  Everyone was super nice.


But you do make me wonder if other countries have that same thing.  I know what you mean about everyone feeling better once "THAT" is put away.  Is that just our culture?  I honestly haven't thought much about it.
Title: Re: Cancer, Living With
Post by: Skulker on April 13, 2016, 08:58:43 AM
I can empathize about needle sticks to the scrotum. When I had my vasectomy I would have sworn they injected me with hot lead.  :f5:
Title: Re: Cancer, Living With
Post by: brilligtove on April 21, 2016, 07:24:00 PM
I got through Friday and Saturday. The rest will come later - I have an appointment to get to now.

2016-04-15 Friday Showertime Eruption

I’ve been alternating use of larybuttons, going naked, and using baseplates. With my itchtastic skin starting to get under control, baseplates are still in a nasty experience after a few hours. Even a kerchief around my neck can get nasty after a while.
On Friday I was wearing a button – the larger size my SLP gave me. It was reasonably comfortable and seemed to give a pretty good seal, so I decided to try it in the shower with my little blue downspout – an attachment to the button/baseplate that fits where an HME would go. It points down so water can’t run in your stoma.

I was cautious of course, but things seemed to be going well. Then, partway through my shower it suddenly leaked, big time. Normally when I get water in my lungs in a shower it’s because I inhaled hard enough to suck water up the downspout, and it is a tiny amount. In this case, I think the water ran in the top of my stoma while I was at the bottom of a breath and facing into the spray. That made me cough out my larybutton entirely. When I cough like that and my lungs are empty I convulsively inhale.

Yep. I took a huge breath of shower straight in the blowhole.

Now I was *really* coughing. I tried to turn off the shower while turning out of the spray and shielding my stoma with my other hand, but it was too much to do all at once. I kept coughing hard, which was fine on it’s own. I pushed open the shower door to get out of the spray. That was fine too. Sadly, I was coughing so hard that it triggered my gag reflex in a big bad way.

Don’t get ahead of me.

Gagging is a pretty common occurrence for me. When I clean my stoma there’s a spot in the upper right quadrant that is miswired such that my the skin outside feels like it’s the inside of my windpipe. As you might imagine, that makes for some serious coughing. Sometimes coughing leads to gagging – I have a very sensitive gag reflex – but that usually just means I burp up nasty nasty air.
This time I started to vomit. On the plus side, the bathroom is small and the sink was right in front of me. That caught most of the mess. On the minus side, well, vomit.

It was over an hour before my stomach and breathing really settled down. I had been getting ready to meet Anita at Livé’s swimming, to bring my little girl home for an overnight. After getting hold of the girls they were able to shuffle plans to deal we me being a no show.

We talked about that later. I have generally been quite reliable with Livé, and had not thought at all about backup plans. That thoughtlessness put the ladies in a difficult situation, and made them scramble. I don’t want to put them into that kind of situation; I don’t like being inconsiderate. We’re still working out how we can make sure I have backup for just-in-case scenarios, without totally disrupting everyone’s lives. I’ll let you know how that works out.

2016-04-16 Dramatic Saturday Secrets

Saturday morning I felt a lot better, and was happy to collect Livé at the Treehouse. I think I was using a button that day. While she was in her drama class I wandered around downtown Toronto playing Ingress. Then we came back to the Treehouse for lunch. Then we went for a little hike to the Secret Beach.

That was somewhat challenging, physically. The walk to the public access ‘trail’ to the East of the R.C. Harris Water Filtration Plant was easy enough. Getting down the very steep, muddy, and garbage strewn hill did need some heavy breathing. I popped my cork a few times on the way down. Livé had a great time going down and playing on the beach, collecting dozens of rocks, large and small, for Diva. My button was comfy, but wasn’t working so well for talking. My voice was relatively weak with it, and I was coughing a lot, with lots of phlegm. I had to run after Livé a few times because she couldn’t hear me over the waves, even when I was fairly near.

We came back up the hill by a different route, right alongside the East side of the waterworks. For that trip I just popped my cork and stuck it in my pocket. Livé made the climb with relative ease, but I was able to stay ahead of her. smile emoticon
I took a long nap after dropping her back at the Treehouse. My button stayed in nicely for nap time.

Still To Come:

2016-04-17 Fête-ful Sunday
2016-04-18 Monday Game Design
2016-04-19 Tuesday Edema Action
2016-04-20 Wednesday Editing
2016-04-21 Thursday Edema Action Part II
2016-04-22 Friday Family Fun*
2016-04-23 Collapse*


*I don't KNOW that these are the right titles, given that they take place in the future, but I'm guessing they're pretty accurate.
Title: Re: Cancer, Living With
Post by: lonely moa on April 22, 2016, 06:40:14 PM
A look at oral cancer and HPV.

http://www.abc.net.au/radionational/programs/scienceshow/the-gender-difference-in-risk-of-acquiring-human-papillomavirus/7330168
Title: Re: Cancer, Living With
Post by: brilligtove on April 22, 2016, 11:03:49 PM
2016-04-17 Fête-ful Sunday

From a personal happiness point of view Sunday couldn’t have been better. My mom turned 75 on the 16th and my startlingly organized sister made a great party happen. I was tasked with coffee, tea, and champaign. I stressed the #*@& out about these, but that isn’t really relevant to my Larytales. What is relevant is that I left my go-bag of lary supplies sitting in the foyer of our house, where they would not be terribly useful. When I realized this and took stock, I found that myinventory included: no pipecleaners, one stray saline, a diagram of my surgically altered neck, and nothing else.

If I plugged up my TEP I could likely use the 10mL Addipak to flush the pipe. Once. If I was lucky. If I threw the TEP out (unlikely but that’s why I carry feeding-tube-French-catheters) I’d be fuelled. If I blew out my baseplate I’d be able to work the thumb drive and the party patrons could just deal with the blowhole, dammit.

Still, it wasn’t a comfortable feeling, working without a net like that. Amazingly, I got through without any major issues. The room was very very hot – I’d guess 28°C – and a bit humid, so that probably helped.

On the way home I was trying to do some work in the back seat, but passed out. Between the physical work of hauling around some coolers and helping to clean the place up and tossing children around, well, I was completely spent.

What I’m saying is,
A) Happy Birthday, MOM! I’m not old enough for you to be 75!
B) Thank You, Joy! I’m not sure if you understand just how skilled you are at organizing. Impressive.

A look at oral cancer and HPV.

http://www.abc.net.au/radionational/programs/scienceshow/the-gender-difference-in-risk-of-acquiring-human-papillomavirus/7330168

Thanks for the link, LM. I'll take a gander. I didn't have HPV, but I was told it is a very common cause for cancers where mine was.
Title: Re: Cancer, Living With
Post by: brilligtove on June 18, 2016, 12:01:14 AM
I don't know if this goes here or not, but it's about my life so here you go.
. . .

After a brilliantly fun final swim class for the season - I mean, who gets a teacher who puts on a flerpin' mermaid tail! - Livé and I came back to the Doghouse for dinner. She and I have had a lot of friction about eating, and I push her pretty hard when it comes to focusing and not dawdling. Tonight she ate steadily and nicely - two helpings of Diva's baked mac'n'cheese - and went on to have some caramel Häagen-Dazs. I made a point of complimenting her on her focus and her steady pace. She just about glowed.

Then, for perhaps the second time in my experience, she did not finish her dessert. I'm sure it was just that she was too full and too tired, but it was still remarkable. She went upstairs for a biobreak, and I followed a minute later to run a bath. She needed to rinse off the chlorine from the swim.

During her quiet bath time - which is usually a more raucous affair - she began to cry. "I don't want to tell you why," she kept saying. I have no idea what prompted the tears, but these were real, deeply felt sadness. She's quite capable of putting on a show - tears on demand for whatever occasion she deems worthy - but this was no melodrama.

I said, "Oh, honey, you don't have to tell me. If you want to you can, but you don't have to worry or be afraid of telling me anything."

"I don't want to tell you." She was sitting sideways to me in the tub, staring at the wall. I was gently rubbing her back as she sat in the shallow, salty water.

"Hey, Livé," I said, and waited a moment for her to look at me. Tears were running slowly down her cheeks. "I love you no matter what."

The crying didn't stop, but the emotional turmoil seemed to get a little lighter. "Do you want to tell me what you're feeling? You don't have to tell me why. Are you sad? Or angry? Or frightened? Or in pain?"

After a long pause, she said, "Sad," in a tiny, choked voice.

"I get sad sometimes too," I said. "Sometimes there's a reason, like when I did something I didn't mean to do, or when I hurt someone by accident. Sometimes I just get sad for no reason, too."

Kathleen - Diva - came in, and I caught her up on the situation. "I get sad too, sometimes," she said. "Everyone does."

Livé was definitely exhausted, which I think was the main cause for this turmoil. I suspect that her belly was too full as well, and the discomfort was too much with her brain juice that dirty.* She just seemed so lost and so devastated and so hurt. As I was helping her dry off, she sat there utterly passive and despondent, wrapped in two towels. Our drying off process is usually fairly energetic, involving making the towels into hats and dresses. Not tonight.

"Would you like a hug?" I asked.

"No," she said, sounding completely defeated.

"Can I hug you anyways?"

"Yes." Her voice broke as she said it.

It was a long hug.

I took her to her bed, and tucked her in, surrounded by a bevy of stuffies (stuffed animals for those who didn't know like me until about a year ago).  "Would you like to cuddle a bit?" She hasn't really wanted to cuddle with me for at least a year now. I mean, she likes to cuddle, but it's usually a wriggly affair with reading and stories and conversation and invention and tickles and squirms and so on.

"Yes, daddy."

I climbed into the bed, lying on my right side, holding her loosely. She started to pass out, but then had an itchy nose. "Would you like a tissue?"

"Yes please."

I'm not used to her being meek like this. "I'll be right back," I said. It took two tries for me to get myself out of her bed: it's a trundle on the floor, and the position I was in left me little leverage. When I was standing, she quietly said something I couldn't quite make out over the traffic noises from Queen Street. "Want was that, honey?"

"I'll leave a space on the pillow for you to snuggle," she said. The pillow is a little wooly lamb thing that she's been using since she was a baby. It's way too small for me to use with her, but she made sure there was some space for my cheek to rest on it. I was back in a moment with the tissue. After some careful and deliberate blowing and prospecting, she was satisfied with the results. When I held out a hand for the tissue to throw it away, she said, "I'll throw the tissue in the garbage." I picked up the bucket and brought it close enough for her to reach, and then put it back by the door.

We cuddled for a little while, our foreheads almost touching. I rubbed her back slowly, clockwise, figure eight, counter, figure eight. She was asleep in a few short minutes.

I'm either great or terrible with tears: I respect them and the emotion behind them, but they hold no mystery or terror for me. I know a lot of people - mostly men - who are flummoxed by tears, having little experience in their production or resolution. Through all of this I aimed to maintain a tone that was serious but not somber; intense but not worried. Her therapist in ten years will know if I succeeded, I'm sure.

Now, writing about it, I feel ---

I feel sad for my daughter's unnamed sadness; there are tears in my eyes.
I feel elated for my daughter's intense emotions; there is joy in my heart.
I feel proud of my daughter's lust for life; there is a grin on my lips.

Mostly, though, I wonder what caused her such grief. I don't know that I would have shielded her from it because I don't know its cause. She is loved, however, and she appears to believe it, and that is enough.

...Normally I'd sign off with my name or an initial, but tonight it seems appropriate to sign off with her name for me. So:

Be well.

SillyDaddy
___
* It's true. When your brain is tired the cerebrospinal fluid is coincidentally chock full of the waste products of metabolism. Brains use a *lot* of power. When you sleep some of the cells in your brain shrink, opening up spaces for the fluid to flow more freely, flushing out the dirty brain juice.
Title: Re: Cancer, Living With
Post by: The Latinist on June 19, 2016, 07:35:43 PM
That was beautiful and sad, and not unlike a few experiences I've had as a dad.  A few days ago dearest daughter was looking pensive and I asked her what was on her mind.  She said, "sometimes I just refuse to be sad."
Title: Re: Cancer, Living With
Post by: brilligtove on July 25, 2016, 10:37:23 PM
The last few weeks have seen a lot of my physical effort go into building a privacy fence in our yard. I'm physically exhausted by this work and have not been able to do it every day, especially in the serious heat. Even so, I'm going to finish tomorrow and I am proud of the work I have done. The next task is to finish the trimmings on the garage, which will be a bit fiddly, but should be easy enough to do.

(http://uploads.tapatalk-cdn.com/20160726/8f30c35e73e569b55d73765a6f39b8ff.jpg)

(http://uploads.tapatalk-cdn.com/20160726/e460cb91a26b70bb2eb103f968aedab5.jpg)
Title: Re: Cancer, Living With
Post by: brilligtove on July 27, 2016, 04:18:12 PM
It's been a while since I wrote about how I'm doing. I'm moving my posts over to Medium (https://medium.com/@sci_ba/a-cancer-tale-there-are-no-words-15d1e4921fb7?source=linkShare-d4d6c723f99a-1469650631) for this round of writing because it is a much better tool for what I'm trying to do. I'll post links to each day here, of course, but hope you'll join me there with your comments, observations, and your own experiences.

Be well.

ETA: The first post does include pictures and video of me in the bathtub, the howling of a dog, and feels. You have been warned. :)
Title: Re: Cancer, Living With
Post by: brilligtove on July 30, 2016, 07:03:19 PM
If you're interested, here's the recollection so far:

Publication: https://medium.com/there-are-no-words

A Cancer Tale (C-2d) (https://medium.com/there-are-no-words/a-cancer-tale-there-are-no-words-15d1e4921fb7)

Before (C-1d) (https://medium.com/there-are-no-words/there-are-no-words-before-42db8aa6d8f8)

Checking In (C-0d) (https://medium.com/there-are-no-words/there-are-no-words-checking-in-c752e813785b)

Waiting (C+1d) (https://medium.com/there-are-no-words/there-are-no-words-waiting-8c1140a82a6a)
Title: Re: Cancer, Living With
Post by: brilligtove on August 04, 2016, 03:24:22 PM
Today's instalment has another placeholder, a confession, and maybe some insight? Also, one and a half diagnoses and a dialogue between a sad dad and a wise daughter.

https://medium.com/there-are-no-words/there-are-no-words-diagnosis-cdde3ade2484?source=linkShare-d4d6c723f99a-1470338624

It was a year ago today that I got my diagnosis.
Title: Re: Cancer, Living With
Post by: brilligtove on August 09, 2016, 03:08:23 PM
I've been offline for a few days - at least, not on my big beastly computer - because the SSD was not being found by the BIOS. Not sure what happened. After multiple reboots I'm back online and can start blogging this stuff again.

What a pain in the patootie.
Title: Re: Cancer, Living With
Post by: brilligtove on August 15, 2016, 10:18:26 PM
Tomorrow morning I get my one year CT scan results and find out if I'm still clear or if I'm riddled with cancer.

I don't think I'll be spending any time on this site for a little while, though. The level of anger and divisiveness in this community - at least in the threads I've been in and following - is too high for my stress level right now.

I'll let know all know my results at some point.

Be well,

--bt
Title: Re: Cancer, Living With
Post by: lonely moa on August 16, 2016, 01:31:28 AM
Tomorrow morning I get my one year CT scan results and find out if I'm still clear or if I'm riddled with cancer.

I don't think I'll be spending any time on this site for a little while, though. The level of anger and divisiveness in this community - at least in the threads I've been in and following - is too high for my stress level right now.

I'll let know all know my results at some point.

Be well,

--bt

good luck.
Title: Re: Cancer, Living With
Post by: stonesean on August 16, 2016, 11:01:08 AM
Tomorrow morning I get my one year CT scan results and find out if I'm still clear or if I'm riddled with cancer.

I don't think I'll be spending any time on this site for a little while, though. The level of anger and divisiveness in this community - at least in the threads I've been in and following - is too high for my stress level right now.

I'll let know all know my results at some point.

Be well,

--bt

Keep your powder dry, man.
Title: Re: Cancer, Living With
Post by: Crash on August 16, 2016, 01:35:19 PM
one year CT scan results

Shit fuck god damn. Waiting for results, I worry more about the anxiety my family goes through more than myself.  What is what is.  Hoping you don't have to put up with the tumor whack a mole scenario.  Metastasis is some scary shit. 
Title: Re: Cancer, Living With
Post by: brilligtove on August 20, 2016, 09:13:07 AM
The scan was clear - as in no changes since the last scan, which is what they like to see. The visual inspection looked good too.

I was so relieved that I literally deflated: the lymphedema in my neck (mostly in my tongue) shrank dramatically overnight. The lymphatic fluids are supposed to drain through lymphatic vessels but it appears that having enormously tense shoulders can block the flow.

I haven't checked in at SGU during the last week, and sadly I found that improved my mood. This community has been a huge part of my life the last two years. The people I have met through this forum - in person and online - have improved my life in general ways and in specific ways. Now that this place is out of my habitual workflow I'll let it rest for a while - perhaps come back in September.

Go do something nice for someone, because they're nice, and they're someone.

Be well,

Julian / Brilligtove
Title: Re: Cancer, Living With
Post by: Sidewalk Skeptic on August 22, 2016, 12:34:56 AM
Yep give it the finger.


Sent from my iPhone using Tapatalk
Title: Re: Cancer, Living With
Post by: brilligtove on August 24, 2016, 09:29:33 PM
Today was the swallow test that allowed me to go home. Also unexpected flowers and the kind of lump in your throat that comes from emotions.

https://medium.com/there-are-no-words/there-are-no-words-2016-08-24-4b54a11c3a84?source=linkShare-d4d6c723f99a-1472088508
(https://cdn-images-1.medium.com/max/1600/1*B-zI9UotbYxVYqmqljInTQ.jpeg)
Title: Re: Cancer, Living With
Post by: lonely moa on August 24, 2016, 11:50:18 PM
How good is that.
Title: Re: Cancer, Living With
Post by: Skulker on August 25, 2016, 11:29:31 AM
Today was the swallow test that allowed me to go home. Also unexpected flowers and the kind of lump in your throat that comes from emotions.

https://medium.com/there-are-no-words/there-are-no-words-2016-08-24-4b54a11c3a84?source=linkShare-d4d6c723f99a-1472088508
(https://cdn-images-1.medium.com/max/1600/1*B-zI9UotbYxVYqmqljInTQ.jpeg)
This looks like the work of AQB.  ;)
Title: Re: Cancer, Living With
Post by: eaglevintage on August 26, 2016, 08:18:00 AM
Hello, folks. This is a long one. It's been a while.

The Energy Budget

In the weeks following the end of radiation and chemo I was an exhausted, bloody mess. Updates will start again now; much has happened, and we’re hitting some milestones.

The first thing to understand is the concept of an energy budget. I learned of it from an article I read some time ago, but I can’t find the source. Imagine that in an average day you have one dollar of energy to spend. Almost everything you do costs a penny. Getting dressed is a penny. Making breakfast. Ablutions. Commuting. Getting your kid ready. Going to a meeting. Dealing with something stressful. Writing an email… Well, you get the picture. If you’re lucky, you still have some spare change at the end of the day, and can do something with that energy, like read a book, or watch a show, or clean up a mess.

In the weeks following November 20th my energy budget got down to about 10¢. Less some days. After getting up from my night chair (I have to stay inclined, not horizontal) my days were very limited. Consider the following activities from any given day:

- Clean my bloody, crusted stoma and radiation damaged mouth – 1¢
- Wash up at sink (facecloth scrub of smelly / dirty areas) – 1¢
- Take a bath – 1¢
- Make a meal – 1¢
- Eat a meal – 1¢
- Clean up after a meal – 1¢
- Get dressed into fresh clothes – 1¢
- Get dressed for the weather outside – 1¢
- Take dogs for a 10 minute walk – 1¢
- Write something like a blog post or email – 1¢

That’s ten 1¢ activities, which seems reasonable enough – except some of them have to be done more than once in a day. My stoma, for example, usually cost 3¢. One dog walk cost another 2¢. Eating took 4¢ (I made and ate breakfast for two cents and had leftovers for lunch for a penny. Dinner, made by Kathleen, was another penny. She cleaned up everything related to those meals.)

You may have noticed that we’re now at 9¢. Some days my stoma needed extra attention, taking the last penny.Those days I didn’t wash up, didn’t get dressed, and didn’t write anything. Other days I could choose to do one of those things.

Of course I could borrow energy from the day to come. Each borrowed penny it would would knock two cents off the next day’s budget. There were some days where the dogs had to just go in the back yard.

By the time we reached mid December my energy budget was closer to 15¢ most days. That provided a tremendous degree of flexibility compared to the 10¢ level, but I still couldn’t do a lot. There was no discretionary spending.

Over Christmas – which was wonderful – I borrowed heavily from future days. Christmas Day at the Treehouse (the name of the house where my daughter and her moms live – not an actual treehouse) meant Boxing Day was an 11¢ day. I went to see Star Wars anyways because it was the only time my brother in law and sister in law could both join us. I didn’t go over budget that day, so the 27th I was back up to 15¢. I spent about 25¢ that day, since we threw a big potluck party for my family. It was awesome. I think we had 20 people in here, between the uncles, aunts, cousins, in laws, friends, and kids.

When you blow the budget by that much it takes a lot longer to recover. Sometime in the first week of January I was getting back up to the 15¢ level again. I have had some serious dips on some days, but most days are still at that 15¢ budget.

This is frustrating, as you might imagine. I have had some dark, unhappy, and miserable days. Being at this level of energy is expected; I’m not surprised or caught off guard by it. I’m still frustrated though. I’d say I’m champing at the bit, but that takes more energy than I have to spare.

I have started to go see my daughter on Monday evenings again, which has been wonderful, and tonight is her first overnight at the Doghouse since all this started, six months ago. We were – we are – all very excited by that! Livé and Diva baked chocolate chip cupcakes (I got to help do the icing). A bath was required after that, to get the batter out of her hair (Livé, not Diva). Then we had delicious cheesy baked noodle pie (Diva’s version of mac and cheese) and watched Underdog.

The ladies are asleep now, and I’ll be following shortly. I’m sure I have borrowed from tomorrow’s budget, but I’m fine with that. I’d spend it all for time with my daughter.

There’s a lot more to cover, of course. A new TEP, lymphedema, some writing, possible plans, scarf tying techniques, baseplate blunders, and upcoming appointments. If you’ve sent me instant messages or emails in the last few weeks and haven't heard back, please bear with me. I’m doing my best to get through them, but it is taking some time.

I hope all of you had a wonderful holiday filled with food, festivities, and family.

Be well.

--bt

P.S. ...

(http://i.imgur.com/voAl08w.jpg) (http://imgur.com/voAl08w)

The picture was inspired by a black and white image of Lemmie, Bowie, and Rickman giving the finger to cancer. I thought I'd add my voice.

(http://i.imgur.com/T25xL7w.jpg) (http://imgur.com/T25xL7w)

Great information..
Title: Re: Cancer, Living With
Post by: brilligtove on August 26, 2016, 12:01:48 PM
Since it was an anti-crime I'll continue to just say thank you, though I too suspect AQB was my stalker.
Title: Re: Cancer, Living With
Post by: brilligtove on August 28, 2016, 10:30:25 PM
I rode my bike 34K today.

https://medium.com/there-are-no-words/there-are-no-words-2016-08-28-42d4cba34b73?source=linkShare-d4d6c723f99a-1472437791

Feelin' good.
Title: Re: Cancer, Living With
Post by: brilligtove on November 08, 2016, 05:38:36 PM
https://youtu.be/joiXMk5d3K0
Title: Re: Cancer, Living With
Post by: brilligtove on November 08, 2016, 05:40:34 PM
Our Tenth Anniversary

On November 8th, 2006 Mrs. Tove and I got together.* It was at a conference in Florida. The "courting" period that preceded our togetherness was ...tempestuous might be the appropriate term, though "impassioned" and "turbulent" also fit. In many ways our relationship is founded on a shared value: make the world a better place. We aimed to make people's work-lives better because a little bit of better at work can make a big difference everywhere.

We had many spectacular years working together in that domain. The drive remains, though the work ended painfully a few years ago. The time since has been difficult for both of us, professionally and personally. My larynx attempting a hostile takeover of my body gave us a crisis to deal with for the last year-and-a-bit. Now we're both looking for our new normal, while still dealing with depression, anxiety, and other effects of careers and cancer. With a combination of amateur and professional help we're making progress.

“Hang on,” you’re thinking** “this isn't the 'love you best decision partner forever my heart' update I was expecting. No declarations of unadulterated joyous happiness?" Despite our curated Facebook lives, we all know that isn't how life works. We all slog though shit sometimes, and have hard times, and face challenges that seem insurmountable. If you are lucky, as I have been, you might find a partner who is resilient, caring, and supportive. Someone to help you up when you fall, kick your ass when you slack, and cuddle tears and in laughter.  You'll piss each other off and have each other's back. They make good times better and bad times less worse.

Mrs. Tove and I are not normal people. We're not special; we just tend to live in the narrow parts of most bell curves. These ten years have not "been a joy." That sells short the breadth and depth of the commitment and love we share. These ten years have been full of laughter and pain and wonder and glee and silliness and family and fear and birth and death and growth and disaster and adventure.

These ten years have been full of life.

I love you, Mrs. Tove.

___
* No, you don’t get more than a euphemism in this note.
** I wrote this with Deadpool’s voice in my brain, but you can read it however you like.
Title: Re: Cancer, Living With
Post by: Sidewalk Skeptic on November 10, 2016, 01:22:28 PM
Today was the swallow test that allowed me to go home. Also unexpected flowers and the kind of lump in your throat that comes from emotions.

https://medium.com/there-are-no-words/there-are-no-words-2016-08-24-4b54a11c3a84?source=linkShare-d4d6c723f99a-1472088508
(https://cdn-images-1.medium.com/max/1600/1*B-zI9UotbYxVYqmqljInTQ.jpeg)
This looks like the work of AQB.  ;)
Awwwwwwww



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Title: Re: Cancer, Living With
Post by: brilligtove on December 12, 2016, 09:41:36 AM
On Sunday I yanked out my new TEP by mistake. I was at a trampoline park and breathing heavily. When I pulled my scarf away from my neck I tugged the tab and popped it out. I drove home with no valve in the fistula between my airway and my foodway, which meant I couldn't eat or drink anything, and there was a lot of juicy coughing. Not to bad overall though. My fistula doesn't close up too quickly, so I was fine for the hour it took to get home to put the thing back in.

It took about half an hour of real time. This 5 minute video is the compressed version, taken by taping my phone to the bathroom mirror. Next time I'll use the front-facing camera so I can see what it sees instead of aiming for higher quality video.

https://youtu.be/OKRJvb0-FMw
Title: Cancer, Living With
Post by: Sidewalk Skeptic on December 13, 2016, 06:05:51 PM
On Sunday I yanked out my new TEP by mistake. I was at a trampoline park and breathing heavily. When I pulled my scarf away from my neck I tugged the tab and popped it out. I drove home with no valve in the fistula between my airway and my foodway, which meant I couldn't eat or drink anything, and there was a lot of juicy coughing. Not to bad overall though. My fistula doesn't close up too quickly, so I was fine for the hour it took to get home to put the thing back in.

It took about half an hour of real time. This 5 minute video is the compressed version, taken by taping my phone to the bathroom mirror. Next time I'll use the front-facing camera so I can see what it sees instead of aiming for higher quality video.

https://youtu.be/OKRJvb0-FMw
Pretty cool that you learned how to fix it. Crummy that  you  pulled it out by accident. What an amazing invention. I was state trampoline park Saturday working. I was so sad I did not get to bounce.


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Title: Re: Cancer, Living With
Post by: brilligtove on December 13, 2016, 07:50:53 PM
There is a lot of adaptation to go along with this kind of condition, that's for sure.
Title: Re: Cancer, Living With
Post by: brilligtove on January 17, 2017, 10:22:46 PM
I'm taking a course on 3D modelling with Rhino3D because that skill is a choke point in my ability to design things. One class in, we have modelled a very simple ring with a bezel. Today, with the help of some YouTube videos, I figured out how to model a simple shape:

(http://i.imgur.com/aySY3zZ.png)

I am certain my instructor could have done this with three commands where it took me about 300 - but hey, I've only been using a 3D modeller since Saturday, and most of Sunday was spent troubleshooting the PC and Monday was an anxiety-attack shitshow, so really, I'm pretty happy with this.
Title: Re: Cancer, Living With
Post by: lubbarin on January 17, 2017, 10:30:49 PM
I'm taking a course on 3D modelling with Rhino3D because that skill is a choke point in my ability to design things. One class in, we have modelled a very simple ring with a bezel. Today, with the help of some YouTube videos, I figured out how to model a simple shape:

(http://i.imgur.com/aySY3zZ.png)

I am certain my instructor could have done this with three commands where it took me about 300 - but hey, I've only been using a 3D modeller since Saturday, and most of Sunday was spent troubleshooting the PC and Monday was an anxiety-attack shitshow, so really, I'm pretty happy with this.
Magic. I just read a post where you told me that you're learning the ancient arts of high sorcery.

Don't summon anything bigger than your head
Title: Re: Cancer, Living With
Post by: brilligtove on January 17, 2017, 10:45:57 PM
I'm taking a course on 3D modelling with Rhino3D because that skill is a choke point in my ability to design things. One class in, we have modelled a very simple ring with a bezel. Today, with the help of some YouTube videos, I figured out how to model a simple shape:

(http://i.imgur.com/aySY3zZ.png)

I am certain my instructor could have done this with three commands where it took me about 300 - but hey, I've only been using a 3D modeller since Saturday, and most of Sunday was spent troubleshooting the PC and Monday was an anxiety-attack shitshow, so really, I'm pretty happy with this.
Magic. I just read a post where you told me that you're learning the ancient arts of high sorcery.

Don't summon anything bigger than your head

Shit, how drunk was I when I claimed to be Dr. Strange? You sure I didn't just claim to be very strange?
Title: Re: Cancer, Living With
Post by: lubbarin on January 17, 2017, 10:52:09 PM
Look into your heart. Are you 1968 psychedelic groovy enough to be Dr. Strange?
are you?
Title: Re: Cancer, Living With
Post by: brilligtove on January 17, 2017, 10:57:50 PM
Look into your heart. Are you 1968 psychedelic groovy enough to be Dr. Strange?
are you?

https://youtu.be/Fi2PPHEqXsw
https://www.youtube.com/watch?v=O5RdMvgk8b0
https://youtu.be/_gp51lt9kdA
Title: Re: Cancer, Living With
Post by: lubbarin on January 17, 2017, 11:01:05 PM
Sold.

Doctor.
Title: Re: Cancer, Living With
Post by: brilligtove on January 17, 2017, 11:06:20 PM
Doctor Brill does have a nice ring to it. Also, my friends never let me do hallucinogens because they said that it would be redundant,  catastrophic, or both.
Title: Re: Cancer, Living With
Post by: brilligtove on July 30, 2019, 10:07:52 PM
This goes here I guess.

It's almost certainly not cancer this time.

For six months breathing has been a struggle. It started with a viral infection in my airway - my first since the surgery - and got nastier with follow-up allergies. Serious asthma has been the result. That hasn't really explained the serious shortness-of-breath. After a lot of tests - ultrasounds, x-rays, and finally a CT scan - we've found that I likely have a really nasty infection of some sort. The word "necrotizing" was used - but it's not fast moving internal flesh digestion, at least.

On Friday morning I have a bronchioscopy to try to figure out what the hell is actually going on in my lungs. Assuming it's not cancer (which is unlikely) it could be viral, bacterial, or fungal infection - or perhaps something else.

So.

Months of treatments of limited effectiveness continue, but at least I'm likely to find out what is broken soon. Yesterday we were wondering if I'd be dead soon. Today we're wondering what sort of curative treatment could be possible.

Here's hoping.

Be well.
Title: Re: Cancer, Living With
Post by: The Latinist on July 30, 2019, 10:32:13 PM
Are you more susceptible to infection with a tracheostomy?
Title: Re: Cancer, Living With
Post by: brilligtove on July 31, 2019, 12:11:41 AM
Less, generally. A lot of critters want your nasal region to incubate in. Mine is generally not in play.
Title: Re: Cancer, Living With
Post by: CarbShark on July 31, 2019, 12:26:00 AM
Have they discussed Chronic obstructive pulmonary disease (COPD)?


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Title: Re: Cancer, Living With
Post by: lonely moa on July 31, 2019, 05:38:15 AM
Sorry to hear this.  Good luck.
Title: Re: Cancer, Living With
Post by: brilligtove on July 31, 2019, 08:40:13 AM
Have they discussed Chronic obstructive pulmonary disease (COPD)?


Sent from my iPhone using Tapatalk

Not yet. This has characteristics that are chronic and acute. The asthma may clear when we deal with whatever they find on Friday.
Title: Re: Cancer, Living With
Post by: brilligtove on August 02, 2019, 01:16:04 PM
Bad news. It looks like cancer in my left lung.

I'll be updating those with an interest in a group called "There Are No Words (https://m.facebook.com/groups/184536285213092?view=permalink&id=971594756507237&comment_id=971603256506387&notif_t=group_comment&notif_id=1564764043527460&ref=m_notif)" on Facebook. I'll cross-post here too, but may not be so diligent.

Since the spring I have had a cough that gradually got worse, with the addition of shortness of breath in the last few months. I didn't let it slide - my doctors have been trying stuff to deal with all this, and some of it has made some improvement. Not enough, though.

I had a CT scan a few weeks ago. It revealed a 'void' in my left lung that we hoped was some kind of infection. The bronchoscopy this morning found a mass of abnormal tissue there, blocking off that part of my lung.

There will be more tests in the weeks ahead to confirm and clarify, but that's where we are now. We don't know if the mass in my left lung is related to the cancer from 4 years ago or not, or even if it is the only mass one. Thus the testing that is being scheduled now. I'm expecting a PET scan, and depending on what they can diagnose from today's test there may be another bronchoscopy to get another sample. Maybe another CT of my head... Appointments are being made.

We're all overwhelmed, of course. I was kinda hoping to be celebrating 4 years cancer free around now. In 2015 on Aug 2 I was in the ICU still, I think, with an emergency trache tube and some scary days ahead.

I'll let you all know what's going on as I know it.
Title: Re: Cancer, Living With
Post by: Calinthalus on August 02, 2019, 01:29:35 PM
Shit dude.  I always wonder who fears a diagnosis like this worse, those who have beaten it once, or those that have never had to.  I don't think I really ever put any thought into having cancer until I had it.  Now every few months something will make me think of how I'll feel the next time it comes around.


Either way, good luck.  I wish I could offer comfort, but I don't really know how.
Title: Re: Cancer, Living With
Post by: DonA on August 02, 2019, 02:09:08 PM
I just saw you post on Facebook.  Devastating. 

If you ever need anything from a fellow GTA'er let me know.

Title: Re: Cancer, Living With
Post by: brilligtove on August 02, 2019, 02:11:02 PM
Shit dude.  I always wonder who fears a diagnosis like this worse, those who have beaten it once, or those that have never had to.  I don't think I really ever put any thought into having cancer until I had it.  Now every few months something will make me think of how I'll feel the next time it comes around.


Either way, good luck.  I wish I could offer comfort, but I don't really know how.
I suspect those of us who have had it are mostly in the situation you describe. Right now I'm in the phase where we are past "bad news" but can still hope for "treatable".

I just saw you post on Facebook.  Devastating. 

If you ever need anything from a fellow GTA'er let me know.

Thanks, DonA. Can you get us a new Premiere? This one sucks.
Title: Re: Cancer, Living With
Post by: PANTS! on August 02, 2019, 02:59:06 PM
Fuck this.  I am so sorry.  Please let us know what we can do.
Title: Re: Cancer, Living With
Post by: Harry Black on August 02, 2019, 06:53:26 PM
I've been selfishly avoiding this thread because I didnt want to read what I just read.
Im sorry you have to go through this buddy.
Title: Re: Cancer, Living With
Post by: CarbShark on August 02, 2019, 09:33:25 PM
Fuck cancer.


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Title: Re: Cancer, Living With
Post by: brilligtove on August 02, 2019, 09:58:45 PM
Fuck this.  I am so sorry.  Please let us know what we can do.

Same as last time, I'd say. Go do something nice for someone because it's nice and they're someone. Stories of little good deeds bring an amazing amount of emotional support.

I've been selfishly avoiding this thread because I didnt want to read what I just read.
Im sorry you have to go through this buddy.

That isn't selfish. Sympathy appreciated.

Fuck cancer.

I appreciate the sentiment, but I'm pretty sure that would be *really* gross.
Title: Re: Cancer, Living With
Post by: The Latinist on August 03, 2019, 12:51:46 AM
Fuck, man. That sucks.
Title: Re: Cancer, Living With
Post by: brilligtove on August 03, 2019, 01:27:44 AM
For the edification of the masses, I'd like to share some real talk between good friends who have been at death's door with cancer.

The other person is doing great, and is quite likely to live out an 70+year life. Less than a year ago that was prognosis was "prolly dead in three months" which was no fun for anyone. Their treatment was a lucky roll in many ways.

Quote
ME: I suspect there's a very good chance I won't make 50 at this point. I'm not borrowing trouble or worry, but...

THEM: ...but you’re facing a second bout of cancer

ME is 2 months shy of 49.

ME: I mean, I hope that there's a single small mass in one place. But realistically? How TF do I get lung cancer?

THEM: Most likely metastasis from your last bout. Your odds depend on finding out what type it is and if there are others.

ME: If it is a metastasis I have serious doubts that it's in only one place. I'm not aiming for worst case, but I'm having trouble putting a high likelihood on other cases. I mean, there's certainly hope.

ME: I am not particularly hopeful at this moment.

THEM: Understandable. If it’s a single mass and they can remove is surgically you may have a decent chance. Lung treatments are apparently improving. But that’s the best case.

ME: Yup

THEM: This is one of those times when I feel like I’m supposed to say something positive and all I have is that this really sucks and it’s very easy for me to imagine how you feel right now

ME: I understand that you feel that way - but I'm not expecting you to toss me platitudes. I get quite the fuckton of those already.

THEM: Yeah that’s why I was avoiding them. Honestly one of the things you did for me that helped the most was that I didn’t have to pretend to be optimistic about my situation with you

Do something nice for someone. Make the world a little better.
Title: Re: Cancer, Living With
Post by: brilligtove on August 04, 2019, 04:01:09 AM
Back in the hospital, emergency this time. My stoma kept bleeding today. After several hours and a drug or two I seem to be stable. Off to the ICU for monitoring next.

It turns out it's hard to find all the specialists in my conditions in the middle of the night on a Saturday of a long weekend.

I may not be very focussed on Mafia.
Title: Cancer, Living With
Post by: CarbShark on August 04, 2019, 11:53:13 AM
Quote

Fuck cancer.

I appreciate the sentiment, but I'm pretty sure that would be *really* gross.

I was using one of the figurative fucks, not the literal fuck


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Title: Re: Cancer, Living With
Post by: Shakacon on August 04, 2019, 12:18:46 PM
Oh, brilligtove, my thoughts and prayers will be with you.  I will ask my sister to put in a request for you in her special prayer basket as well.  She swears by it.  Please don't hesitate to let me know if there is anything I can do.

I will do my best to keep those scummy hounds looking for some townie targets off you in Mafia.  Don't worry about that.  Focus on getting better, but be sure to post at least once a game day so Captain Video leaves you alone.  I doubt if there are any items we can buy at night to stay the hand of the moderator.
Title: Re: Cancer, Living With
Post by: brilligtove on August 04, 2019, 12:30:07 PM
I was using one of the figurative fucks, not the literal fuck
Hey, I didn't mean to kinkshame. You do you (or that undifferentiated glob of traitor cells).

;)

Oh, brilligtove, my thoughts and prayers will be with you.  I will ask my sister to put in a request for you in her special prayer basket as well.  She swears by it.  Please don't hesitate to let me know if there is anything I can do.

I will do my best to keep those scummy hounds looking for some townie targets off you in Mafia.  Don't worry about that.  Focus on getting better, but be sure to post at least once a game day so Captain Video leaves you alone.  I doubt if there are any items we can buy at night to stay the hand of the moderator.
Tanks o' berry mush.
Title: Re: Cancer, Living With
Post by: Friendly Angel on August 04, 2019, 02:16:04 PM
Non-platitudinous replies escape me.

I do learn what I think is a worthy lesson from how you're managing all this with dignity and integrity.

And I shall seek out opportunities for gratuitous good-doing.

Title: Re: Cancer, Living With
Post by: John Albert on August 04, 2019, 03:05:20 PM
Brill, I'm so sorry to hear this. My heart goes out to you.

Please, whatever you do, keep on fighting, take each day as it comes and never give up hope.
Title: Re: Cancer, Living With
Post by: lonely moa on August 05, 2019, 10:56:21 PM
I feel for you.  Recurrence is every survivors nightmare; mine too, even after 15 years this month.
Title: Re: Cancer, Living With
Post by: brilligtove on August 06, 2019, 12:44:26 PM
I was exhausted from coughing up clot (15mL of so), and glanced at facebook while powering myself down. I saw this Kathy Barnett person posted a long rambling screed about naturopathy and TCM and don't believe your doctors and on and on.

My response:

Quote from There Are No Words group on Facebook (https://www.facebook.com/groups/ThereAreNoWords/973056746361038/?comment_id=974180352915344&notif_id=1564962986131906&notif_t=group_comment)
Quote
Kathy Barnett I am too tired right now to put up with bullshit like naturopathy or be polite about it. If it isn't evidence based IT IS NOT MEDICINE. I'd like to be treated using practices that conform to reality, thanks.

I'd be happy to hear about your journey. I won't be party to advocating for snake oil. Your post has been removed. You are welcome to try again.

Cranky man was cranky.
Title: Re: Cancer, Living With
Post by: Morvis13 on August 06, 2019, 01:04:16 PM
If prayer actually worked there would be no such thing as cancer. Everybody on the planet knows someone that has had cancer.
That said if it made you feel better I'd lie to you as well.

Thanks for keeping us up to date and do let us know if there is anything we can do to help.
Title: Re: Cancer, Living With
Post by: brilligtove on August 06, 2019, 02:56:39 PM
In some ways hospitals are like the military: long periods of boredom and repetition punctuated by periods of Very Excitement.

Conversations here can be quite helpful in the quiet times.
Title: Re: Cancer, Living With
Post by: Morvis13 on August 06, 2019, 02:59:01 PM
they letting you out of ICU soon? At least you are conscious and can have conversations.
Title: Re: Cancer, Living With
Post by: brilligtove on August 06, 2019, 03:17:17 PM
Timelines are not at all clear. I'm probably healthy enough to go home soon, but it's difficult to discharge someone out of an ICU. The big frustration at this moment is the wait for pathology to get to my biopsy. That can take 2 weeks. UGH.
Title: Re: Cancer, Living With
Post by: Morvis13 on August 06, 2019, 03:31:22 PM
They won't keep you in ICU for 2 weeks. Not with Ford watching the bottom line. You can wait in a regular bed or at home if you are healthy enough.
Title: Re: Cancer, Living With
Post by: brilligtove on August 06, 2019, 06:11:39 PM
This unit is for patients with compromised airways for various reasons. I was here 4 years ago after my laryngectomy, actually. I don't expect to be here that long though. I am too healthy to be here given the low probability of a follow-up bleed. I'd rather be at home.
Title: Re: Cancer, Living With
Post by: Harry Black on August 08, 2019, 06:07:42 PM
There might be a day where its too much for you and on those days, (Im sure i dont need to tell you) its ok to feel hopeless.
Your strength and optimism is genuinely inspiring though. I admire you so much you will never know.
Title: Re: Cancer, Living With
Post by: Tatyana on August 09, 2019, 07:11:44 PM
:(

I don't know what to say except I am really sorry to hear you have been admitted to hospital.

My mum just went through treatment for carcinoid tumours her lung.

I really hope things go well for you.

Title: Re: Cancer, Living With
Post by: gcason on August 10, 2019, 12:04:24 AM
You are inspiring, brilligtove. Truly.
Title: Re: Cancer, Living With
Post by: brilligtove on August 10, 2019, 05:27:48 AM
News: Good, Gross, Slow

Good News
There is no evidence that the cancer has spread beyond my left lung. These are the conclusions of the radiology reports from the CT scans and PET scan on Wednesday.

Gross News
This is a relatively detailed description of what’s going on inside my chest. I’ll give some explanations of any technical terms, but Wikipedia is your friend.

The upper lobe of my left lung is a mess.

The mass is in the left hilar area[1] – where your airway splits to enter each lung, and then into each lobe of each lung. My hilar mass is doing two things: blocking airflow to upper lobe of my left lung, and blocking bloodflow to my entire left lung.

The lack of airflow has caused a hole to form in my left upper lobe. Normally your lung is like a sponge, with tiny balloons (alveoli) that fill up with air with each breath. In that part of my lung those structures are not there anymore. Basically, there is a void, likely bounded by damaged (maybe diseased) tissue.

The lack of bloodflow is a different matter. The left hilar mass has obstructed my left pulmonary artery.

The pulmonary arteries are low-pressure blood vessels that carry blood from the heart to the lungs. Once in the lungs, that blood gives up CO2 (from the body) and picks up O2 (from the air). The key phrase here is “once in the lungs.” Blood is not getting into my left lung to do that gas-exchange. Even though most of my left lung is inflating and deflating just fine, the O2 level on the inhale and the exhale are basically the same. When I asked Dr. Gazala about that he called it a 'shunt' noted that most of his students and many doctors would not have drawn that connection. I guess my brain is still in reasonable shape.

In any case that shortness of breath? I’m really only working with one lung.

The weirdness that my cardiologist found on my heart is almost certainly all this crap. My heart itself is likely pretty healthy.

Slow News
The next step is a biopsy of the mass. We need the biopsy in part because there is still a small chance that the left hilar mass is an infection, and no oncologist will plan treatment without a good biopsy.

There are two ways to get it: another bronchoscopy, or a CT guided lung biopsy.

A bronchoscopy is the preferred way in because the mass is right at the entrance to my lung. In this procedure a tube is run down from my stoma to the mass, and a sample is taken. Unfortunately, getting scheduled for that procedure could take a while, and we all (docs included) want this biopsy in the next few weeks.

The CT guided biopsy puts a probe in between my ribs, through the void, and out to the mass. This is less likely to get a good sample because the void is likely not cancerous - it is a hole, not a solid mass - and you have to go a lot further to get to the nasty bits. It is much quicker to schedule, however. If I can avoid this, I will.

Next Steps
Over the next few days I will get an appointment scheduled for the CT guided biopsy, and Dr. Gazala will see what schedule magic he can work out to squeeze a bronchoscopy in quickly.

I have spoken with Dr. T (my GP), who has referred me to palliative care services – not because there are no treatments in my future, but because they are experts in symptom management. The other doctors see symptoms as “problems I’m going to fix” instead of “shit Julian and his family have to struggle to live with.” I know that this may be too subtle a shift in perspective for those doctors to comprehend.[2] It leads to silly decisions like under-prescribing pain medication or not considering what assistance I might need at home.

Dr. T. and I are also going to try to figure out why I’ve had a sinus headache for two weeks. (Remember the scans were clear and they knew to look at my head for that headache. It's something else.)

Now you know what I know.

Be well.

--j

____

[1]https://en.wikipedia.org/wiki/Root_of_the_lung

[2]I'm a little bit salty about some of the ways the system makes it harder for medical professionals to be compassionate. The point stands though, even with sarcasm.
Title: Re: Cancer, Living With
Post by: brilligtove on August 11, 2019, 06:03:25 AM
This might be our old Bouvier's last day.

Walter took a sudden turn for the worse last night. He had blown out his left knee a few weeks back, on top of standard 12½ year old big-dog arthritis. He was enthusiastic and happy though, and showing steady improvments. He even lead my wife on a long walk (long for him at least), on top of a stroll on the park with all of us (Agatha: 10 months, Bouvier; Scarlett: 2y, shih-poo, Kathleen: 00, human).

At some point in the evening he lost a lot of stability on all sides. The loss of balance and coordination was bad enough that he started falling over. He showed signs of disorientation, confusion, and distress, though not pain, I think. He was unable to find a place to sleep, wanting to go somewhere but not sure where. Eventually I gave him an extra dose of gabapentin (still within his prescription) to settle him down. Still, I walked him in circles around the house for almost 90 mins last night, a sling under his tummy to keep him from tipping over during the long panting pauses between moves.

He's not in obvious distress now, but he is too unstable to crouch to pee and a poop squat is impossible. I have already called the vet about an end-of-life house call.

So yeah. I have an emptiness in my chest, a lump on my heart that takes my breath away, and my dog is dying, and none of it is metaphorical. Oh, and despite the amputated vocal apparatus grief still chokes me up too much to speak.

#IRLCountrySongsSuck
Title: Re: Cancer, Living With
Post by: PANTS! on August 11, 2019, 09:24:47 AM
This might be our old Bouvier's last day.

Walter took a sudden turn for the worse last night. He had blown out his left knee a few weeks back, on top of standard 12½ year old big-dog arthritis. He was enthusiastic and happy though, and showing steady improvments. He even lead my wife on a long walk (long for him at least), on top of a stroll on the park with all of us (Agatha: 10 months, Bouvier; Scarlett: 2y, shih-poo, Kathleen: 00, human).

At some point in the evening he lost a lot of stability on all sides. The loss of balance and coordination was bad enough that he started falling over. He showed signs of disorientation, confusion, and distress, though not pain, I think. He was unable to find a place to sleep, wanting to go somewhere but not sure where. Eventually I gave him an extra dose of gabapentin (still within his prescription) to settle him down. Still, I walked him in circles around the house for almost 90 mins last night, a sling under his tummy to keep him from tipping over during the long panting pauses between moves.

He's not in obvious distress now, but he is too unstable to crouch to pee and a poop squat is impossible. I have already called the vet about an end-of-life house call.

So yeah. I have an emptiness in my chest, a lump on my heart that takes my breath away, and my dog is dying, and none of it is metaphorical. Oh, and despite the amputated vocal apparatus grief still chokes me up too much to speak.

#IRLCountrySongsSuck

JFC.  I want to give your the bearest of hugs.
Title: Re: Cancer, Living With
Post by: brilligtove on August 11, 2019, 09:43:18 AM
I'm'a have'ta double-check the spelling on that adjective first.

Ok, we're good.

/me cries again because FFS
Title: Re: Cancer, Living With
Post by: Morvis13 on August 11, 2019, 10:28:47 AM
I don't know what to say. Have a good cry. Remember the good times and take comfort in your friends and family.
Title: Re: Cancer, Living With
Post by: brilligtove on August 11, 2019, 10:48:51 AM
Not a lot to say. The last few weeks have been a shitshow.
Title: Re: Cancer, Living With
Post by: brilligtove on August 11, 2019, 09:27:50 PM
Walter's gone.

We're very sad, though the stroke yesterday made it undeniably the right time. He was discombobulated, but had no discomfort. We got to spend the whole day with him.

His death was vet-assisted. It was painless, quick, and Walter was at home, surrounded by his pack.

I am glad that it happened now, before I'm back hospitals and treatment.

Maybe a week of not full of shitty things could be attempted?
Title: Re: Cancer, Living With
Post by: brilligtove on August 11, 2019, 09:34:56 PM
(https://i.imgur.com/FBXmKUy.jpg)
Walter before his first haircut as a puppy.


(https://i.imgur.com/VMrcwDl.jpg)
Still Wally. Scared the crap out of people in the street. "BEAR!"


(https://i.imgur.com/mDXjDRT.jpg)
From bottom to top, Walter lazing, Agatha and Scarlett playing, and a random other dog.


(https://i.imgur.com/kUv4hj6.jpg)
Walter, just before the end.
Title: Cancer, Living With
Post by: CarbShark on August 12, 2019, 12:19:09 AM
https://www.facebook.com/xaqtly/videos/10161997004583990?s=739590627&sfns=mo

https://youtu.be/ZcBxXvibT4c

Hey, buddy, one of my closets friends has  stage three colon cancer and is doing kemo.

He’s also having fun. Well, as much fun as he can what with the neuropathy and other side effects.

He’s the son of one of my favorite singer-songwriters (Harry Nilsson) and while he didn’t inherit his dad’s voice he’s a first class drummer, and has written a few songs too.

I like watching his videos and thought you might too.


Sent from my iPhone using Tapatalk
Title: Re: Cancer, Living With
Post by: Friendly Angel on August 20, 2019, 07:21:20 PM
My neighbor has an inoperable abdominal tumor... he's probably terminal, he's depressed.
My brother has prostate cancer... active surveillance, not too bad... he's dealing.
My daughter's boyfriend's mother has breast cancer again... it's worse than they were expecting, she's a nurse and knows what's what.

And I am ridiculously healthy and feeling guilty about feeling good.
Title: Re: Cancer, Living With
Post by: brilligtove on August 20, 2019, 09:32:16 PM
Emotions are dumb. I understand the guilt-because-health thing happens and you can't just make it stop. Unless you've been poisoning people it's pretty hard to find the part where you are responsible though. It can help to focus on gratitude for health instead (thankful to luck in a skeptic's case).

I'm glad your health is good!

ETA And in another demonstration of how good I am at empathy, I should have started with:

Shit. Nobody needs that kind of sickness in their life. I hope that the outcomes - whatever they are - include good quality of life and as little suffering as can be had.
Title: Re: Cancer, Living With
Post by: brilligtove on August 23, 2019, 10:42:37 PM
On the positive side I've been getting really good care, especially when it's been urgent. I'd like to not be back in the hospital again though? I mean.

I was trying to count the number of CT scans and x-rays I've had in the last month. Dozens? I'm surprised I'm not glowing.
Title: Re: Cancer, Living With
Post by: Calinthalus on August 24, 2019, 07:55:25 AM
Between the CT, MRI, and PET scans...I became really upset that I didn't develop superpowers.  Stan Lee promised.
Title: Re: Cancer, Living With
Post by: Noisy Rhysling on August 24, 2019, 09:47:32 AM
Had cryoablation to remove my prostate last Oct. Pain diminished over the next three months. My PSA is now undetectable.

I don't recommend that process.
Title: Re: Cancer, Living With
Post by: brilligtove on August 24, 2019, 07:10:43 PM
Freezing out your prostate does not sound like a good time. Yeesh.
Title: Re: Cancer, Living With
Post by: lonely moa on August 25, 2019, 05:34:25 AM
We had  head and neck cancer week.  Weirdly interesting to a survivor of same. 

Go Gardasil.  It's free to young men and women (in NZ) and a pox on mothers that don't vaccine their offspring.
Title: Re: Cancer, Living With
Post by: Noisy Rhysling on August 25, 2019, 09:46:01 AM
Freezing out your prostate does not sound like a good time. Yeesh.
It was billed as "minimally invasive". Yeah, proximity to an explosion was minimally invasive too, but it took six months to recover from that.  ::)
Title: Re: Cancer, Living With
Post by: brilligtove on August 27, 2019, 01:14:59 PM
CT Guided Biopsy Results: Cancer
My GP called yesterday. The latest CT guided lung biopsy shows cancer in my left lung. Samples were taken from the wall of the big hole only (it is too dangerous to biopsy the hilum using this technique). The hilar mass and the void are almost certainly the same cancer, however. The tests so far do not indicate if the current cancer is a descendent of the laryngeal cancer or a new primary site. I don’t know if, how, or when that might be determined.

This diagnosis is not a surprise: it was the most likely scenario. Aside from my usual shortness of breath and tiredness I am sad. “Not a surprise” is not at all the same as “good news.” At least we know more.

Treatment Options
I have no idea what my treatment options are yet. I have not spoken to any of my specialist doctors yet, and may not hear from them until the end of the week.

In general, treatment for cancer comes in four forms: cut, burn, poison, and hunt.
Title: Re: Cancer, Living With
Post by: Noisy Rhysling on August 27, 2019, 06:50:33 PM
Good luck to you.
Title: Re: Cancer, Living With
Post by: Friendly Angel on September 12, 2019, 12:53:36 PM
My neighbor has an inoperable abdominal tumor... he's probably terminal, he's depressed.

Quote from: Friendly Angel
Neighbor got the prognosis yesterday, he has a year at most.  Old friends and colleagues are coming by his house to commiserate - it's literally morbid.  His wife will be a widow at age 62.

Neighbor is down to a couple weeks.  He has home hospice coming every day.  Wife and I are going to go see him tomorrow.  We've been warned that his appearance is disturbing. 
I don't know him very well, we're friendly neighbors, not friends.  Don't have much in common but his daughter and my wife are close friends.

I have no idea what I'm going to say.  I hope I don't just step on my tongue.


I've been thinking about this more.  I don't think the guilt is about feeling good, I think the guilt is about thinking I'm happy that it's not me that has to deal with that crap... and feeling happy about feeling good.  Anyway, it's not a repressive kind of guilt, it's just enough to restrain me from shouting "I FEEL GREAT" all the time.
Title: Re: Cancer, Living With
Post by: brilligtove on September 12, 2019, 08:54:54 PM
My neighbor has an inoperable abdominal tumor... he's probably terminal, he's depressed.

Neighbor got the prognosis yesterday, he has a year at most.  Old friends and colleagues are coming by his house to commiserate - it's literally morbid.  His wife will be a widow at age 62.

Emotions are dumb. I understand the guilt-because-health thing happens and you can't just make it stop. Unless you've been poisoning people it's pretty hard to find the part where you are responsible though. It can help to focus on gratitude for health instead (thankful to luck in a skeptic's case).

I'm glad your health is good!

I've been thinking about this more.  I don't think the guilt is about feeling good, I think the guilt is about thinking I'm happy that it's not me that has to deal with that crap... and feeling happy about feeling good.  Anyway, it's not a repressive kind of guilt, it's just enough to restrain me from shouting "I FEEL GREAT" all the time.

Shouting "I feel great" all the time would be a bit much. :) Some people who don't feel great will interpret that as "I am better than you" whether you feel that way or not. I happen to not be one of the people who would put that on you: I'm happy you are healthy and feel good. That takes nothing from me, and - presuming you're not an evil fiend - likely makes the world a better place.
Title: Re: Cancer, Living With
Post by: brilligtove on September 12, 2019, 08:58:00 PM
My wife and I had a good visit at the Odette Centre. Dr Louie (Radiation Oncologist) was helpful and is moving things along. He got us down in the scanning department to get the targetting scans done. No mask to wear this time, but I have 3 new tiny blue tattoos. Practically a constellation. Dr. Louie has also set up my meeting with a medical oncologist (chemo) for the 18th. That won't delay anything, as treatment is due to start on September 30th. It takes a few weeks to do the math on the radiation paths, especially given my previous doses in nearby areas. This time will look a lot like treatment last time: about 30 doses of radiation five days a week for six weeks.

I don't know what the chemo will look like yet, but it will be happening at the same time as the radiation. It enhances the effectiveness of the radiation.

If immunotherapy is possible, it will be done some time after the rad/chem. There is a reasonable chance that immunotherapy will be possible, but we won't know until well into (or even after) the burning and poisoning are complete.

At this point they're talking in terms of 'curative treatment', which is nice.
Title: Re: Cancer, Living With
Post by: Noisy Rhysling on September 13, 2019, 05:18:17 AM
It's nice to be "in maintenance mode". I'm in "we'll check you every six months now". G'luck to ya, mate.
Title: Re: Cancer, Living With
Post by: Calinthalus on September 13, 2019, 08:12:44 AM
Yeah, I'm going to my oncologist Monday morning for another game of "Don't Be Shy, I'm just squeezing your remaining ball while having a conversation".


Glad to hear they are using the 'curative treatment' model brillingtove.  You always dread the word "palliative".
Title: Re: Cancer, Living With
Post by: brilligtove on October 04, 2019, 05:25:17 PM
Yeah, I'm going to my oncologist Monday morning for another game of "Don't Be Shy, I'm just squeezing your remaining ball while having a conversation".


Glad to hear they are using the 'curative treatment' model brillingtove.  You always dread the word "palliative".

I hope your fondling had positive outcomes.

Week One: Done.
Title: Re: Cancer, Living With
Post by: Noisy Rhysling on October 04, 2019, 05:52:43 PM
Lab results, PSA "Undetectable".

I'll try to do better next time.
Title: Re: Cancer, Living With
Post by: The Latinist on October 05, 2019, 02:22:27 PM
My doctor wants to do a PSA at my next routine blood work.  I tried to tell him that I'm probably not going to do anything regardless of the results, but he wasn't really listening.  I'm 42 years old, there's no history of prostate cancer in my family, and risks of false positive seem to me still to outweigh the likelihood of catching a curable, life-threatening prostate cancer. Sigh.
Title: Re: Cancer, Living With
Post by: Noisy Rhysling on October 05, 2019, 03:06:01 PM
My doctor wants to do a PSA at my next routine blood work.  I tried to tell him that I'm probably not going to do anything regardless of the results, but he wasn't really listening.  I'm 42 years old, there's no history of prostate cancer in my family, and risks of false positive seem to me still to outweigh the likelihood of catching a curable, life-threatening prostate cancer. Sigh.
An elevated PSA means you should get checked. It's just a red flag. My PSA never went over 7 when I was Dx'd (via biopsy) back in '99.
Title: Re: Cancer, Living With
Post by: The Latinist on October 05, 2019, 03:32:35 PM
An elevated PSA means you should get checked. It's just a red flag. My PSA never went over 7 when I was Dx'd (via biopsy) back in '99.

But the point is that I'm not going to have a biopsy if it comes back elevated anyway. The false positive rate of the test is so high and the likelihood that any cancer discovered is both treatable and needs to be treated now is so low, that the NNT of biopsy based on PSA alone doesn't justify it. All getting a screening will do is (potentially) create stress.
Title: Re: Cancer, Living With
Post by: Noisy Rhysling on October 05, 2019, 05:30:09 PM
An elevated PSA means you should get checked. It's just a red flag. My PSA never went over 7 when I was Dx'd (via biopsy) back in '99.

But the point is that I'm not going to have a biopsy if it comes back elevated anyway. The false positive rate of the test is so high and the likelihood that any cancer discovered is both treatable and needs to be treated now is so low, that the NNT of biopsy based on PSA alone doesn't justify it. All getting a screening will do is (potentially) create stress.
That's cool, if you don't have cancer.
Title: Re: Cancer, Living With
Post by: The Latinist on October 05, 2019, 05:41:56 PM
An elevated PSA means you should get checked. It's just a red flag. My PSA never went over 7 when I was Dx'd (via biopsy) back in '99.

But the point is that I'm not going to have a biopsy if it comes back elevated anyway. The false positive rate of the test is so high and the likelihood that any cancer discovered is both treatable and needs to be treated now is so low, that the NNT of biopsy based on PSA alone doesn't justify it. All getting a screening will do is (potentially) create stress.
That's cool, if you don't have cancer.

I should not be having a PSA test. It's not medically justified because it is far more likely to cause unnecessary procedures and stress than it is to save my life. My doctor is insisting on ordering one; short of changing doctors (which I will consider), I can't get my A1C (which *is* medically justified) tested without it. So, believing that the downside outweighs the upside, what is the logical decision to make should the results of this unnecessary test come back positive?
Title: Re: Cancer, Living With
Post by: Noisy Rhysling on October 05, 2019, 05:54:20 PM
I wouldn't have any invasive procedure without a second opinion.
Title: Re: Cancer, Living With
Post by: bachfiend on October 05, 2019, 06:38:03 PM
My doctor wants to do a PSA at my next routine blood work.  I tried to tell him that I'm probably not going to do anything regardless of the results, but he wasn't really listening.  I'm 42 years old, there's no history of prostate cancer in my family, and risks of false positive seem to me still to outweigh the likelihood of catching a curable, life-threatening prostate cancer. Sigh.
An elevated PSA means you should get checked. It's just a red flag. My PSA never went over 7 when I was Dx'd (via biopsy) back in '99.

My doctor insists on doing a PSA level annually, despite my thinking it’s a waste of time.  I’m 64, and my PSA level always comes in as below the normal range, so the only way it could change is to increase, possibly raising red flags.  Or I could have had a particularly hard session cycling.

I take consolation that if it ever happens that my doctor thinks a biopsy is necessary, which is a blind procedure, and can miss small tumours, I can insist on a nuclear magnetic scan first, to see if there’s a tumour present.  I think currently it wouldn’t be covered by medical benefits in Australia, and I’d have to pay the price myself (around $400), which I think is cheap, if it allows me to avoid an unnecessary biopsy.  And direct the biopsy if necessary.
Title: Re: Cancer, Living With
Post by: lonely moa on October 06, 2019, 01:53:11 AM
The GP insisted I have a PSA test last year.  He said it had been ten years since my last one.  I said I didn't really want one and he said if it comes back "one" we won't think about it again.  It cam back "one".  Job done. 

PSA tests are the male version of mammograms.  A black hole, really.
Title: Re: Cancer, Living With
Post by: brilligtove on October 06, 2019, 06:21:59 AM
Somewhere in my 40s m doctor asked me to do one as a baseline for future tests, rather than as a lone diagnostic test. That seemed like a reasonable thing to do.
Title: Re: Cancer, Living With
Post by: The Latinist on October 06, 2019, 08:22:41 AM
Allow me to put some numbers to this:

The PSA test with a cutoff of 4 ng/mL has a sensitivity of just .205, meaning that 20.5% of people who have prostrate cancer will have a positive result.  Moreover, it has a specificity of .936, meaning that 93.6% of people who do not have prostate cancer receive a negative result. “But wait...” those of you who can subtract might be saying, “doesn’t that mean that 6.4% of people who take the test will receive a positive result even though they don’t have cancer?” Yep, it does.

But that doesn’t take into account prior probabilities at all. So what does that mean for me if I receive a positive result?

Well, as near as I can find, the prevalence of prostate cancer in those ages 40-44 is 0.000037, or .0037%. The likelihood that I have prostate cancer right now without any further testing are about .0037%. I think that everyone would agree that performing a biopsy based upon this knowledge alone would not be medically justified. That would mean everyone would be given an annual biopsy at huge risk and expense. But if we could add in a positive PSA result, what would be my likelihood of having cancer?  Surely it would go up?

Well, yes, of course it does.  But the question is by how much?  Applying a little Bayesian statistics to the question, we can figure this out.  I’ll spare you the math (though I’ll provide it if you want), but the upshot is that my likelihood of having cancer if I get a positive PSA is 0.000118506 or about 0.01%.  Yes, I’m three times as likely to have cancer as I was before the test, but the odds that I actually have cancer are still minuscule!  Moreover, the likelihood that My result is a false positive are 99.98%!

So, I ask you, do you think such a result really changes the calculus as to whether I should pursue further testing?

And this doesn’t even consider the likelihood that any cancer detected would actually ever become life-threatening (which is low). Nor does it take into account the risks of biopsy or the reduction in quality of life that could come with such treatment. Or the stress such a result would create even if I didn’t pursue further diagnostics.

Somewhere in my 40s m doctor asked me to do one as a baseline for future tests, rather than as a lone diagnostic test. That seemed like a reasonable thing to do.

I had not considered that, and I don’t know anything about the value of such a baseline. My doctor didn’t mention that.
Title: Re: Cancer, Living With
Post by: brilligtove on October 06, 2019, 09:55:51 AM
Allow me to put some numbers to this:

The PSA test with a cutoff of 4 ng/mL has a sensitivity of just .205, meaning that 20.5% of people who have prostrate cancer will have a positive result.  Moreover, it has a specificity of .936, meaning that 93.6% of people who do not have prostate cancer receive a negative result. “But wait...” those of you who can subtract might be saying, “doesn’t that mean that 6.4% of people who take the test will receive a positive result even though they don’t have cancer?” Yep, it does.

But that doesn’t take into account prior probabilities at all. So what does that mean for me if I receive a positive result?

Well, as near as I can find, the prevalence of prostate cancer in those ages 40-44 is 0.000037, or .0037%. The likelihood that I have prostate cancer right now without any further testing are about .0037%. I think that everyone would agree that performing a biopsy based upon this knowledge alone would not be medically justified. That would mean everyone would be given an annual biopsy at huge risk and expense. But if we could add in a positive PSA result, what would be my likelihood of having cancer?  Surely it would go up?

Well, yes, of course it does.  But the question is by how much?  Applying a little Bayesian statistics to the question, we can figure this out.  I’ll spare you the math (though I’ll provide it if you want), but the upshot is that my likelihood of having cancer if I get a positive PSA is 0.000118506 or about 0.01%.  Yes, I’m three times as likely to have cancer as I was before the test, but the odds that I actually have cancer are still minuscule!  Moreover, the likelihood that My result is a false positive are 99.98%!

So, I ask you, do you think such a result really changes the calculus as to whether I should pursue further testing?

And this doesn’t even consider the likelihood that any cancer detected would actually ever become life-threatening (which is low). Nor does it take into account the risks of biopsy or the reduction in quality of life that could come with such treatment. Or the stress such a result would create even if I didn’t pursue further diagnostics.

Somewhere in my 40s m doctor asked me to do one as a baseline for future tests, rather than as a lone diagnostic test. That seemed like a reasonable thing to do.

I had not considered that, and I don’t know anything about the value of such a baseline. My doctor didn’t mention that.

Thanks for the thorough breakdown. I understand how true/false positives/negatives work conceptually, but they tend to break my brain. I had a blood test alongside my regular blood tests, so there wasn't even an extra needle jab. I would likely have refused a biopsy based on the risk of infection and complications.

I don't have any stats on baseline testing, and didn't realize the true positive rate was that low. If the actual measurements is reasonably accurate a baseline could make sense.

I've now read your post three times. Well done!
Title: Re: Cancer, Living With
Post by: bachfiend on October 06, 2019, 05:19:26 PM
PSA stands for prostate specific antigen.  It’s prostate specific, not cancer specific.

PSA testing should never have been allowed as a screening test.  It’s very useful when its level is very high.  If a person is known to have cancer, such as with secondaries elsewhere, and its level is very high, then it’s pretty certain the person has prostate cancer (women have an analogue of the prostate, and rarely they can have an equivalent of prostate cancer, in the same way that men can have breast cancer).

Or if the prostate cancer has been treated, such as removal of the prostate, and the PSA level - which initially after treatment was very low - and its level starts to increase, then it’s an indication that the cancer has recurred.

But if it’s used as a screening test, low increased or increasing levels of PSA don’t indicate cancer necessarily.  Another option other than blind biopsies, which are hit or miss (I used to be an anatomical pathologist.  The biopsies are very thin threads of tissue, usually 6 in number, and it wasn’t unusual for initial biopsies to be negative, and repeat biopsies to contain cancer in one of the threads), is to have a magnetic resonance scan of the prostate (if you have access to a facility, and can afford to pay for it), which will at least show whether you’ve got a tumour or not.  And a MRI is non-invasive.
Title: Re: Cancer, Living With
Post by: Noisy Rhysling on October 06, 2019, 06:08:08 PM
I don't think anyone goes from a positive test straight to the O.R.
Title: Re: Cancer, Living With
Post by: bachfiend on October 06, 2019, 07:08:54 PM
I don't think anyone goes from a positive test straight to the O.R.

No, but they do go straight to a urologist.  A general practitioner getting a raised or increasing PSA level on a patient would be forced to refer a patient to avoid being sued for malpractice if the patient is shown later to have prostatic cancer that causes ‘harm.’  And urologists have an interest in operating.  It’s the way they make a living.

It’s been shown in many studies that if there’s a financial incentive in doing a procedure, then it tilts the decision making process towards doing the procedure rather than not doing it.

It’s simpler for a general practitioner not to do PSA testing as a screening procedure.  It’s justifiable, and the practice guidelines allow this.
Title: Re: Cancer, Living With
Post by: Noisy Rhysling on October 06, 2019, 07:37:30 PM
Weird.
Title: Re: Cancer, Living With
Post by: bachfiend on October 06, 2019, 07:48:28 PM
Weird.

What’s weird?
Title: Re: Cancer, Living With
Post by: Noisy Rhysling on October 06, 2019, 08:00:51 PM
Weird.

What’s weird?
Being afraid of tests. You use tests to make informed decisions. You can allow medics to stampede you with them, or you can say "That's interesting but I need more data to make an informed decision."
Title: Re: Cancer, Living With
Post by: bachfiend on October 06, 2019, 08:16:09 PM
Weird.

What’s weird?
Being afraid of tests. You use tests to make informed decisions. You can allow medics to stampede you with them, or you can say "That's interesting but I need more data to make an informed decision."

You also need information to know whether you should give informed consent to have any procedure, including so-called PSA screening.
Title: Re: Cancer, Living With
Post by: Noisy Rhysling on October 06, 2019, 08:22:59 PM
Weird.

What’s weird?
Being afraid of tests. You use tests to make informed decisions. You can allow medics to stampede you with them, or you can say "That's interesting but I need more data to make an informed decision."

You also need information to know whether you should give informed consent to have any procedure, including so-called PSA screening.
Are you afraid of the possible results?

You don't have to answer that one.
Title: Re: Cancer, Living With
Post by: Friendly Angel on October 06, 2019, 08:31:12 PM
My doc ordered a bunch of blood tests,  PSA was one of them,  I didn't object,  got several years of data.  I do wonder what the point is though.

USPSTF recommends no screening for anybody.

Title: Re: Cancer, Living With
Post by: bachfiend on October 06, 2019, 10:36:34 PM
Weird.

What’s weird?
Being afraid of tests. You use tests to make informed decisions. You can allow medics to stampede you with them, or you can say "That's interesting but I need more data to make an informed decision."

You also need information to know whether you should give informed consent to have any procedure, including so-called PSA screening.
Are you afraid of the possible results?

You don't have to answer that one.

No, I’m not afraid of the results.
Title: Re: Cancer, Living With
Post by: The Latinist on October 07, 2019, 09:24:09 AM
Weird.

What’s weird?
Being afraid of tests. You use tests to make informed decisions. You can allow medics to stampede you with them, or you can say "That's interesting but I need more data to make an informed decision."

I don't think anyone has expressed fear of tests. Bachfiend and I have expressed the opinion that the use of this particular test for routine prostate cancer screening causes more harm (expense, needless test, treatment of cancers that would never have impacted health, unnecessary stress from a high rate of false-positive results) than good. This is because the test's sensitivity and specificity and the percentage of prostate cancers that are actually dangerous are all quite low. Yes, if you give everyone this test you will catch more prostate cancers; but in deciding whether to do such a test routinely we should not consider only the upside, but also the downside.

Maybe we should split this discussion off from the main thread; I feel like we have hijacked a thread that was meant to be a place to discuss living with cancer to discuss an issue that's only tangentially related.  I apologize for my part in doing so, but I do want to discuss this issue further; for instance, I would like to extend the discussion to mammography and other routine tests.  I think I shall drop the mods a note.
Title: Re: Cancer, Living With
Post by: brilligtove on October 07, 2019, 11:15:42 AM
Weird.

What’s weird?
Being afraid of tests. You use tests to make informed decisions. You can allow medics to stampede you with them, or you can say "That's interesting but I need more data to make an informed decision."

I don't think anyone has expressed fear of tests. Bachfiend and I have expressed the opinion that the use of this particular test for routine prostate cancer screening causes more harm (expense, needless test, treatment of cancers that would never have impacted health, unnecessary stress from a high rate of false-positive results) than good. This is because the test's sensitivity and specificity and the percentage of prostate cancers that are actually dangerous are all quite low. Yes, if you give everyone this test you will catch more prostate cancers; but in deciding whether to do such a test routinely we should not consider only the upside, but also the downside.

Maybe we should split this discussion off from the main thread; I feel like we have hijacked a thread that was meant to be a place to discuss living with cancer to discuss an issue that's only tangentially related.  I apologize for my part in doing so, but I do want to discuss this issue further; for instance, I would like to extend the discussion to mammography and other routine tests.  I think I shall drop the mods a note.

I'm interested in a thread that explores Good Use of Testing / Bad Use of Testing. I'm glad you raised the topic.

Today is the start of week two. I've just had my blood taken. The next stop is a visit with the chemotherapy admissions nurse, who will go over the lab results to make sure I'm fit for poisoning today. I'm expecting between 3 and 4h of chair-time: it takes a while to get the pre-chemo drugs in via IV, and then the two chemo drugs take a while. After all that, radiation.

I did not sleep so well last night, so chances are I'll be napping in the comfy chemo chair.
Title: Re: Cancer, Living With
Post by: bachfiend on October 07, 2019, 08:03:32 PM
Weird.

What’s weird?
Being afraid of tests. You use tests to make informed decisions. You can allow medics to stampede you with them, or you can say "That's interesting but I need more data to make an informed decision."

I don't think anyone has expressed fear of tests. Bachfiend and I have expressed the opinion that the use of this particular test for routine prostate cancer screening causes more harm (expense, needless test, treatment of cancers that would never have impacted health, unnecessary stress from a high rate of false-positive results) than good. This is because the test's sensitivity and specificity and the percentage of prostate cancers that are actually dangerous are all quite low. Yes, if you give everyone this test you will catch more prostate cancers; but in deciding whether to do such a test routinely we should not consider only the upside, but also the downside.

Maybe we should split this discussion off from the main thread; I feel like we have hijacked a thread that was meant to be a place to discuss living with cancer to discuss an issue that's only tangentially related.  I apologize for my part in doing so, but I do want to discuss this issue further; for instance, I would like to extend the discussion to mammography and other routine tests.  I think I shall drop the mods a note.

Perhaps we should just start a thread?  I’m not certain what the wording would be.
Title: Re: Cancer, Living With
Post by: lonely moa on October 08, 2019, 01:42:37 PM
Medical screening?
Title: Re: Cancer, Living With
Post by: Friendly Angel on October 08, 2019, 02:37:42 PM

Perhaps we should just start a thread?  I’m not certain what the wording would be.

Prostates, Living With

Apologies to Briligtove
Title: Re: Cancer, Living With
Post by: brilligtove on October 08, 2019, 11:53:33 PM
I have one that I live with. :)
Title: Re: Cancer, Living With
Post by: brilligtove on October 18, 2019, 02:24:22 AM
2019-10-17

Pain

Hi, everyone.

Since noon Wednesday my pain levels have ranged from 8 to 10:
(https://cdn.paindoctor.com/wp-content/uploads/2017/02/pain-scales.png)
I like this particular scale because it focusses on behaviours more than feelings.

As mentioned elsewhere on SGU, in my life I have experienced 9 before, for brief periods. For about 6 hours on Wed I was pinned at 10, to the point I was passing out from the agony. Since then it's been between 6 and 8. I need a different scale to account for all vomiting and shitting blood, but the nausea has been in the 4 to 7 range.

During this time we have been 'chasing the pain' instead of getting ahead of it. Dr. W. (palliative care with 80% of her work on pain management) dramatically restructured the medications I get for pain and nausea. My nurses have been very reluctant to give me the doses she prescribed, or even some of the drugs she's prescribed. They have said, "it's too much" or "but the side effects" and such.
At about 9pm tonight I got a 2mg subcutaneous dose of hydromorphone - the breakthrough dose I can have as often as every hour if needed. The nurse gave me 1mg to start, but I insisted on 2mg.

By 9:15pm, for the first time in thirty three hours, my pain was honest-to-FSM manageable. Down to a 2 or 3. I have had a few doses since then, though not as often as I'm allowed, and not always as much as my max.

When I woke up with a fever on Wednesday morning I did the right thing and got myself to the Emergency ward at Sunnybrook (my hospital). We thought we had that dealt with and I was released. Then the consequences of my series of unfortunate events came crashing down: allergic reaction > BP crash > colon section lost O2 > sudden constipation (https://media.giphy.com/media/xTiTnhnS1kQKfgpAHK/giphy.gif)> AGONY > massive diarrhea > blood + poop shifting to blood only > the poops have poop colour again, if nothing else.

In all that time I was only able to send notes of 2-3 words. Awful.

Be well.
Title: Re: Cancer, Living With
Post by: Friendly Angel on October 18, 2019, 02:38:06 AM
Quote

Be well.

Gulp.  You too buddy.
Cyber hugs ftom California.
Title: Re: Cancer, Living With
Post by: PANTS! on October 18, 2019, 06:44:24 AM
Fuck.  I am sorry.  Stay away from the Opiates.
Title: Re: Cancer, Living With
Post by: brilligtove on October 18, 2019, 07:31:15 AM
When treating pain like this? Opiates are very much what the doctor ordered. Today I am a renewed man. Incredible difference.
Title: Re: Cancer, Living With
Post by: The Latinist on October 18, 2019, 07:37:12 AM
Yeah, the idea that we should avoid opiates when someone is in that kind of pain in a hospital setting is, in my opinion, messed up. And it’s why Brilligtove spent so much time in pain and his nurses are trying to short him.
Title: Re: Cancer, Living With
Post by: Morvis13 on October 18, 2019, 07:49:17 AM
Why do nurses think they are doctors and can change someones' medication? I know they are in charge of the patient care but shorting someone isn't really helping them.

Anyway please take care of yourself and concentrate on getting better.
Title: Re: Cancer, Living With
Post by: John Albert on October 18, 2019, 08:16:38 AM
Was the constipation a side effect of the high opiate dosage?
Title: Re: Cancer, Living With
Post by: brilligtove on October 18, 2019, 12:08:07 PM
Why do nurses think they are doctors and can change someones' medication? I know they are in charge of the patient care but shorting someone isn't really helping them.

Anyway please take care of yourself and concentrate on getting better.

I am glad that nurses question what doctors are doing. It's a part of the system designed to weed out errors of judgement, mistakes, cognitive biases, and so on. Checklists are another. Not actually delivering the prescribed care is a different issue. The same dynamic can be seen in many organizations, where front-like workers have deep and detailed experience in a focussed domain, but limited exposure to considerations that cross outside their subject matter expertise. The inverse applies too, leaving the folks "in charge" out of touch with the details of how the organization functions. That's specialization, and it's great. It's also funny to see a doctor have no idea how to turn off a medical alarm on an IV, or struggle to put on OR gloves without an OR nurse, etc.

Yeah, the idea that we should avoid opiates when someone is in that kind of pain in a hospital setting is, in my opinion, messed up. And it’s why Brilligtove spent so much time in pain and his nurses are trying to short him.

In the particular case yesterday my nurse was Not A Good Nurse. I'm thinking some pretty hardcore DKE had her vastly overconfident in her judgement, while her lack of competence got in the way of her getting the job done at speed. She fell further and further behind the amount of work to be done due to terrible time management, which exacerbated the situation.
Title: Re: Cancer, Living With
Post by: The Latinist on October 18, 2019, 12:37:38 PM
The forgotten victims of the opioid epidemic are the people who are really in severe pain and who are being under-prescribed opiates out of fear.  I've seen both sides of the coin: I had a colleague who became addicted to opiates and spiraled into crime, unemployment and even homelessness before getting clean; and I've seen a person dying of brain cancer who suffered because doctors were afraid to prescribe her the opiates she needed.  There has to be a middle ground to be found somewhere.
Title: Re: Cancer, Living With
Post by: brilligtove on October 18, 2019, 07:18:05 PM
Agreed.
Title: Re: Cancer, Living With
Post by: PANTS! on October 19, 2019, 10:33:52 AM
When treating pain like this? Opiates are very much what the doctor ordered. Today I am a renewed man. Incredible difference.

Sorry - I was thinking about addiction.  I should not have been so insensitive.
Title: Re: Cancer, Living With
Post by: brilligtove on October 19, 2019, 02:38:06 PM
When treating pain like this? Opiates are very much what the doctor ordered. Today I am a renewed man. Incredible difference.

Sorry - I was thinking about addiction.  I should not have been so insensitive.

I took no offence. It was clear where your perspective was, and you sparked a meaningful conversation. As a baseline heuristic "stay away from opiates" isn't terrible either. I am not in the situation that people trapped in the opioid crisis are dealing with, but there is every chance I'll come out of this with some withdrawal and related issues to deal with.

Quick Update
I'm still in hospital so I have a standing dose of 1.5mg subcutaneous hydromorphone every 4 hours, and can call for an additional 2mg subQ every hour for breakthrough pain. In fact I'm taking something like 2mg per 3h for breakthrough pain and cough suppression. I look to still be healing, and doing a reasonable job of it, so that's likely to go down before I get out of here. My prescriptions for home will have a different mix of fast and slow acting hydromorphone to better manage my symptoms, but won't be up in the stratosphere by then.
Title: Re: Cancer, Living With
Post by: brilligtove on October 22, 2019, 06:57:01 AM
The last week in hospital was wild and exciting and chaotic and frustrating and rewarding.

This is not a combination I expected.

Last night was my first night home in a week. In many ways my sleep was more restful, despite having only a few hours of it so far. I am just starting to get used to the idea that the doses I need are in a range this high.

I am trying to start symptom management with "high quality of life" instead of starting with "endure until you can not." The dissonance between my established mental models is digging up all sorts of whackfuckery buried in my sense of self. I am fighting myself to take I take a dose that is consistent with "start with PAIN=None (0)" on the scale instead of "start with PAIN=Endurable (4)". Quite a learning curve. It is made a bit easier by the fact I can measure the tapering of my dose - up or down - and so far everything is pointed to less pharmaceutical intervention, not more.

I will have event-based updates later in the week, but I'd really like to talk more with you all about drugs and symptom management. At the moment I'm thinking of pain and nausea as categories of physical symptom where I can use a simplified behavioural scale to talk about them in a consistent way. This one worked well for both in hospital:
(https://cdn.paindoctor.com/wp-content/uploads/2017/02/pain-scales.png)
Title: Re: Cancer, Living With
Post by: Noisy Rhysling on October 22, 2019, 11:52:00 AM
I'm wary of pain meds, based on a incident involving full respiratory arrest (and a mad dash to a hospital five blocks away). If you take pain meds have a coach around if you can. Someone who can keep track of what you took, and when. Easy to lose track when you're in the purple haze.

And yesterday I got oxycontin. Five hundred of the 90mg. pills. Waiting for a call from the VA pharmacy on that one.
Title: Re: Cancer, Living With
Post by: The Latinist on October 22, 2019, 04:11:55 PM
Brilligtove, could you give just a brief explanation of the source of your pain? I don't need or really even want details, but I'm curious about whether it was a direct result of the cancer, a side effect of treatment, infection, etc., or something else that I'm not even thinking of.

I will have event-based updates later in the week, but I'd really like to talk more with you all about drugs and symptom management. At the moment I'm thinking of pain and nausea as categories of physical symptom where I can use a simplified behavioural scale to talk about them in a consistent way. This one worked well for both in hospital:
(https://cdn.paindoctor.com/wp-content/uploads/2017/02/pain-scales.png)

That pain scale would work well, I think, for pain of medium to long duration, but I'm not sure how well it would work for acute or transient pain due to its dependence on changes in activity and phrases such as 'all the time.'  I would be reluctant to say in the hour after an injury, for instance, that I was 'in pain all the time' or that 'it keeps me from doing most activities'; I would be unlikely to have attempted any activities, and how could I call an hour 'all the time'? I wasn't in pain just an hour ago, and I have no idea whether I'll be in pain in another hour.  In short, the phrasing of the descriptions would make me very uncomfortable and I would feel as though any answer I gave were dishonest.  Hell, even trying to explain my discomfort with the scale here has cause me significant distress; I've reworded this several times, and I've been constantly starting sentences over.  I think I'd have to have been in pain for at least several hours before I would find this scale useful.

ETA: It is really only the descriptions for pain levels 4-7 that are an issue.  I would say that I've experienced pain of 8 or 9 for brief periods (measured in minutes); but for the hour after that, how would I have described my pain?  Nothing on that chart would have seemed right to me.
Title: Re: Cancer, Living With
Post by: brilligtove on October 22, 2019, 11:10:19 PM
Brilligtove, could you give just a brief explanation of the source of your pain? I don't need or really even want details, but I'm curious about whether it was a direct result of the cancer, a side effect of treatment, infection, etc., or something else that I'm not even thinking of.

I will have event-based updates later in the week, but I'd really like to talk more with you all about drugs and symptom management. At the moment I'm thinking of pain and nausea as categories of physical symptom where I can use a simplified behavioural scale to talk about them in a consistent way. This one worked well for both in hospital:
(https://cdn.paindoctor.com/wp-content/uploads/2017/02/pain-scales.png)

That pain scale would work well, I think, for pain of medium to long duration, but I'm not sure how well it would work for acute or transient pain due to its dependence on changes in activity and phrases such as 'all the time.'  I would be reluctant to say in the hour after an injury, for instance, that I was 'in pain all the time' or that 'it keeps me from doing most activities'; I would be unlikely to have attempted any activities, and how could I call an hour 'all the time'? I wasn't in pain just an hour ago, and I have no idea whether I'll be in pain in another hour.  In short, the phrasing of the descriptions would make me very uncomfortable and I would feel as though any answer I gave were dishonest.  Hell, even trying to explain my discomfort with the scale here has cause me significant distress; I've reworded this several times, and I've been constantly starting sentences over.  I think I'd have to have been in pain for at least several hours before I would find this scale useful.

ETA: It is really only the descriptions for pain levels 4-7 that are an issue.  I would say that I've experienced pain of 8 or 9 for brief periods (measured in minutes); but for the hour after that, how would I have described my pain?  Nothing on that chart would have seemed right to me.

This is a ramble. My ability to do complex systems thinking is spent for the day and I'm about to pack it in, so you get what you get. :)

TL, those are interesting point about duration. I don't experience the same cognitive discomfort you do regarding the reporting window and the interpretation of the experience. That makes hard for me to speculate whether any scale can address your concerns. I absolutely agree that duration needs to be incorporated into any pain scale design at some fundamental level.

I am not in much pain now because the palliative doctor caring for my symptom management has been incredible. The doses I'm on are much higher than I would have expected, and with a drastically different mix of (mostly) long-acting and short acting top-up hydromorphone. The delivery mechanisms have very different - and complimentary - potency profiles.

My primary use of hydromorphone is to control my coughing. NR, respiratory suppression is a "side effect" in the context of most pain management, and often how an overdose gets you. In my context the respiratory effects are primary instead, and getting loopy is the side effect.

For muscular pain in my thoracic area I take up to 3000mg of Tylenol a day - 6@500mg horse-sized pills. I've had 6/10 wound pain taken out by a relatively low dose of hydromorphone with ease... at the same time a 4/10 pain from an intercostal muscle pull was unaffected. 1000mg of Tylenol obliterated that pain in minutes and kept it away for 8h.

The notional 'pain' scale I came up with this morning attempts to pare things down to straight up behavioural impacts of a specified symptom. Nausea, wounds, and a mobility limiting condition would all be describable by my "The Scale". Note that the following was splashed down in one go at 7AM and has not been altered by anything since. Duration will need to be added as a design constraint.

The Scale

When applied to symptoms like pain or nausea the numerical Scale rating indicates a behavioural impact related to the symptom. A textual description is associated with the number.

0 no symptom
1 hardly noticeable: aware of symptom if attention is called to it
2 mild: aware of symptom if I attend to it
3 uncomfortable: passively manage symptom; aware
4 moderate: actively manage symptom; constantly aware
5 distracting: ongoing active management with opportunity cost
6 distress: ongoing active management is my primary activity
7 unmanageable: ongoing active management is my only activity
8 intense: active management regularly fails catastrophically
9 severe: I am the symptom
10 total: alone I may die from symptom

I'm packing up for the night and look forward to your thoughts when I can get here again.
Title: Re: Cancer, Living With
Post by: The Latinist on October 23, 2019, 10:23:22 AM
Ah, so is the pain from injuries secondary to your cough?  I have had an intercostal muscle tear from coughing before, and it was quite painful. Interestingly, I developed a huge bruise that migrated to my belt line, as though the blood were pooling above a tourniquet (as, indeed, it was).  My doctor and I ultimately used hydrocodone to control that cough, so I understand the primary use of opiates for cough suppression.

As for your pain scale, I'm not sure I can get on board with it, particularly due to 9 and 10.  They are colorful descriptions of an experience I am sure you have had, and I acknowledge them; but I doubt that they are generalizable.  I will consider further how I might describe my experience of pain.
Title: Re: Cancer, Living With
Post by: brilligtove on October 23, 2019, 12:38:22 PM
Ah, so is the pain from injuries secondary to your cough?  I have had an intercostal muscle tear from coughing before, and it was quite painful. Interestingly, I developed a huge bruise that migrated to my belt line, as though the blood were pooling above a tourniquet (as, indeed, it was).  My doctor and I ultimately used hydrocodone to control that cough, so I understand the primary use of opiates for cough suppression.

As for your pain scale, I'm not sure I can get on board with it, particularly due to 9 and 10.  They are colorful descriptions of an experience I am sure you have had, and I acknowledge them; but I doubt that they are generalizable.  I will consider further how I might describe my experience of pain.

For 9 and 10 I was aiming to simplify the same numbers on the other scale. I think "becoming the symptom" is a touch poetic but also exactly what I meant to say. (Doesn't mean it's right!) The Scale assumes one person with one symptom with one intensity as a foundation.

Behaviourally, a 9 is saying the symptom has reached an intensity where it has overwhelmed you completely, but you're just shy of uttter helplessness. An example might be a person undergoing a catastrophic mental breakdown to the extent that they can not be assessed as a person with reportable internal experiences, but only as a set of behaviors, perhaps within some diagnostic grouping.

Title: Re: Cancer, Living With
Post by: brilligtove on October 24, 2019, 10:01:54 AM
Here's what happened to me last week - at least at the most basic level. I'll tell the plausible narrative another time.

Everything about what I had happen was weird and makes no sense. I can tell you a great story about what every Doc has said collectively. It makes total sense on the surface. You will nod along.

When telling any specific specialist that tale they nod too. As I get closer to their area of expertise the nods fade to frowns. Interruptions start. Arms cross, and the head shakes. They have now stopped listening. The story, however, continues. More stuff happened, and the less specific and detailed expertise you have about the events that follow, the more sense it makes.

I need a doctor who has much broader diagnostic skill for the cases where nothing makes sense. Yes, I know I mean House. :)

I am certain of what I have experienced to the extent I was able to be conscious at the time. The simplest version, seen from a distance: a 48 year old man had a first-time bout of colitis while taking radiotherapy and chemotherapy for lung cancer. Nothing is causally connected: it just happened to happen in the same few weeks.

My mom seems to be worried that I'm not getting enough treatment, since chemo is cancelled for me for at least the next three weeks.

In cancer treatment it is almost never the case that more is better - nor that less is better. We are at a point where no matter why my bowels are wounded, we have to address my current constellation of observed symptoms.

Sure, we have evidence of acute and damaging inflammation in there, and we know when some of it happened. But I also have a bilateral burn-like rash across my knuckles. It is painfully heat sensitive - but might be even more photosensitive. What the he heck is that about? And no one presents with nausea on day 5 after taxol or carbo. That's just silliness. The list goes on...

So that's my update for now. No more giant Mondays! The chemo I've had has almost certainly been beneficial but my wounded bowels have to heal before we even think about other ways to poison me to health. My guts took a serious hit and are still shedding chunks of tissue. Think in terms of a hugely bad sunburn that is now peeling off inside.
Title: Re: Cancer, Living With
Post by: Calinthalus on October 24, 2019, 10:21:22 AM
Yeah, I think there's a lot we don't know that seems unconnected on the surface.


I've never tested as having a high cholesterol.  Ever.  I've had hypertension for a long while.  My final week of chemo a few years back, I had a major heart attack.  My LAD was 100% blocked.  They put in a stent.  Said, it must be high cholesterol and put me on cholesterol meds.  I've never had a high cholesterol blood test.  As many damn blood tests as I've had managing my hypertension, and then going through cancer and chemo, you would think a cholesterol test would have been done, and would have shown up as high.  No.  Always normal.  But every doctor says that for sure my heart attack was caused by high cholesterol because that's what causes heart attacks.


I know, Post Hoc Ergo Propter Hoc...just because my attack was during my last week of chemo does not mean the one caused the other.  Still, I can't help but feel they are related somehow.
Title: Re: Cancer, Living With
Post by: brilligtove on October 24, 2019, 04:20:32 PM
I hear you. There is no reason to think that I had any colitis before, several reasons to think it could be caused by events in my day, and doctors saying "but that doesn't make sense because [subject matter expertise]." I mean, okay? But every doctor is saying that about their part of my puzzle. Frustrating. It feels like they are all stuck on "scientists have proven bees can't fly" instead of "we can not yet explain how it works, but look, here we observe it."
Title: Re: Cancer, Living With
Post by: Noisy Rhysling on October 24, 2019, 06:07:27 PM
Brillig, House spent 55 minutes of every show nearly killing his patients. Get somebody who isn't an addict.
Title: Re: Cancer, Living With
Post by: The Latinist on October 24, 2019, 08:40:24 PM
Ah, so is the pain from injuries secondary to your cough?  I have had an intercostal muscle tear from coughing before, and it was quite painful. Interestingly, I developed a huge bruise that migrated to my belt line, as though the blood were pooling above a tourniquet (as, indeed, it was).  My doctor and I ultimately used hydrocodone to control that cough, so I understand the primary use of opiates for cough suppression.

As for your pain scale, I'm not sure I can get on board with it, particularly due to 9 and 10.  They are colorful descriptions of an experience I am sure you have had, and I acknowledge them; but I doubt that they are generalizable.  I will consider further how I might describe my experience of pain.

For 9 and 10 I was aiming to simplify the same numbers on the other scale. I think "becoming the symptom" is a touch poetic but also exactly what I meant to say. (Doesn't mean it's right!) The Scale assumes one person with one symptom with one intensity as a foundation.

Behaviourally, a 9 is saying the symptom has reached an intensity where it has overwhelmed you completely, but you're just shy of uttter helplessness. An example might be a person undergoing a catastrophic mental breakdown to the extent that they can not be assessed as a person with reportable internal experiences, but only as a set of behaviors, perhaps within some diagnostic grouping.

As I said, I do not doubt that it expresses well your own experience, but it highlights a difficulty in developing such a scale that will work for everyone. While you use colorful language such as that to describe your experience of pain, I never would. And what is more, if I were presented with such language by a healthcare professional attempting to evaluate my pain I would lose all confidence in their ability and might in fact be offended by it.
Title: Re: Cancer, Living With
Post by: brilligtove on October 25, 2019, 07:41:27 AM
TL I get the impression that you think my experience is extremely unusual. Is that accurate?
Title: Re: Cancer, Living With
Post by: The Latinist on October 27, 2019, 09:34:06 AM
TL I get the impression that you think my experience is extremely unusual. Is that accurate?

Not unusual at all, but personal. I am at pains not to dismiss your description of your pain because I know that the experience of pain is inherently subjective and I cannot assume that you experience it the same way that I do. I also know that our use of language influences how we think and feel about our experiences, so I accept that, for you, “I am the symptom” is a phrase with meaning that expresses how you have personally felt.  I am merely pointing out that the same would not be true of everyone who experienced similar pain.

For one thing, it relies upon a metaphor, which is a figure of speech to which people have varying reactions. I have worked with many very bright students who, for neurological reasons, would find the phrase difficult even to comprehend, or who would consider it an absurd logical impossibility or even inherently dishonest. I myself, although I do not have such difficulty understanding figurative language, would be uncomfortable with its usage in a clinical setting. Again, I am at pains to say that this does not mean it’s not a valid scale for you (and for all I know even the vast majority of people); but it would not be for everyone.
Title: Re: Cancer, Living With
Post by: brilligtove on October 28, 2019, 12:16:01 AM
TL I get the impression that you think my experience is extremely unusual. Is that accurate?

Not unusual at all, but personal. I am at pains not to dismiss your description of your pain because I know that the experience of pain is inherently subjective and I cannot assume that you experience it the same way that I do. I also know that our use of language influences how we think and feel about our experiences, so I accept that, for you, “I am the symptom” is a phrase with meaning that expresses how you have personally felt.  I am merely pointing out that the same would not be true of everyone who experienced similar pain.

For one thing, it relies upon a metaphor, which is a figure of speech to which people have varying reactions. I have worked with many very bright students who, for neurological reasons, would find the phrase difficult even to comprehend, or who would consider it an absurd logical impossibility or even inherently dishonest. I myself, although I do not have such difficulty understanding figurative language, would be uncomfortable with its usage in a clinical setting. Again, I am at pains to say that this does not mean it’s not a valid scale for you (and for all I know even the vast majority of people); but it would not be for everyone.
At no point did I think you were questioning my experience. I just wasn't clear on what you were trying to tell me, and so sought clarification. Much appreciated.

I think my symptom scale suffers from being a mix of potentially observable behavioural impacts and internal subjective descriptions of how a symptom affects the person. I think I'll try to tease the levels apart into what can be observed by someone else, and what the patient might report about the impacts of the symptom. Pain is one symptom that the scale should apply to, but I have been considering nausea, seizures, and emotional turmoil as touchstones for any descriptions.

From an external point of view, the lower levels (1-4) may not be visible to an observer at all. The patient has the capacity to manage their behaviour in the face of the symptom, so it may not show. At the middle levels of intensity (5-7) the symptom would be increasingly visible to an external observer, in part because the patient has to use so much of their focus and effort to manage the symptom. At the highest levels (8-10) the patient may not even be able to report what they are experiencing with any accuracy because their capacity to cope is overwhelmed.

From an internal point of view, levels 1-4 start to affect your mood, as more effort is needed to compensate for the symptom. Personally, I am unlikely to do anything specific to address a symptom until it reaches a 3. I'll almost always be motivated enough to do something by level 4. At levels 5-7 you're in significant distress, and likely have people asking if you're OK or what's wrong. At 8-10 the symptom is overwhelming enough that you can't really deal with anything except the symptom.

In any case, I do appreciate your insight. Thank you for clarifying to help me understand what you were getting at. That was helpful.
Title: Re: Cancer, Living With
Post by: Friendly Angel on November 09, 2019, 01:27:20 AM
My neighbor has an inoperable abdominal tumor... he's probably terminal, he's depressed.

Quote from: Friendly Angel
Neighbor got the prognosis yesterday, he has a year at most.  Old friends and colleagues are coming by his house to commiserate - it's literally morbid.  His wife will be a widow at age 62.

Neighbor is down to a couple weeks.  He has home hospice coming every day.  Wife and I are going to go see him tomorrow.  We've been warned that his appearance is disturbing. 
I don't know him very well, we're friendly neighbors, not friends.  Don't have much in common but his daughter and my wife are close friends.

I have no idea what I'm going to say.  I hope I don't just step on my tongue.
Title: Re: Cancer, Living With
Post by: brilligtove on November 09, 2019, 01:21:26 PM
My neighbor has an inoperable abdominal tumor... he's probably terminal, he's depressed.

Quote from: Friendly Angel
Neighbor got the prognosis yesterday, he has a year at most.  Old friends and colleagues are coming by his house to commiserate - it's literally morbid.  His wife will be a widow at age 62.

Neighbor is down to a couple weeks.  He has home hospice coming every day.  Wife and I are going to go see him tomorrow.  We've been warned that his appearance is disturbing. 
I don't know him very well, we're friendly neighbors, not friends.  Don't have much in common but his daughter and my wife are close friends.

I have no idea what I'm going to say.  I hope I don't just step on my tongue.

Some unsolicited advice:

You'll likely have to let him lead, but I'd go in with just visiting my neighbour as my baseline attitude. He may want to be 'normal' for a little bit with someone friendly but not burdened with too much closeness. He may want to reminisce, or be angry, or sad, or worry about the people he's leaving behind. At least you won't be tempted to pull the shitty 'better place' bullshit that hurts so much.

If you can, don't go in dreading how he looks, or how you'll react to his appearance. He likely doesn't want to watch you avoiding looking at him or such. There's no good or right thing to say here, so don't try to make one up. Showing your sadness is honest and in my experience, supportive. It's hard to find people who can look at death straight on and then have a conversation about lawns.

Good luck.
Title: Re: Cancer, Living With
Post by: brilligtove on November 28, 2019, 12:55:55 AM
Bye for a while.

I was going to write about why, but sadly, this place is no longer worth the spoons. There are about eight good people here IMO. They tend to be lost in the torrent of vomit from the rest of you.

Maybe I'll come take a look again one day. Assuming the cancer doesn't kill me this time, it might be good for nostalgia one day.
Title: Re: Cancer, Living With
Post by: Jeremy's Sea on November 28, 2019, 02:36:41 PM
Bye for a while.

I was going to write about why, but sadly, this place is no longer worth the spoons. There are about eight good people here IMO. They tend to be lost in the torrent of vomit from the rest of you.

Maybe I'll come take a look again one day. Assuming the cancer doesn't kill me this time, it might be good for nostalgia one day.
I won't guess which camp I fall into, but one of the reasons I came back initially to look around again was to see how you were doing since I deleted facebook long ago, where I once followed your progress.
I'm sorry that the first round didn't kick it out. Life is super fucking randomly sucky that way and the older I get the more I see we all have some version of this going on in our personal lives. Best luck to you, and my heartfelt wishes for your family too. And most of all I hope you get to experience the nostalgia on your own terms.
Title: Re: Cancer, Living With
Post by: Noisy Rhysling on November 28, 2019, 08:38:02 PM
I report the VA tomorrow to see if they got all the cancer. I'm not unduly disturbed about the possibility that they didn't.
Title: Re: Cancer, Living With
Post by: Jeremy's Sea on November 29, 2019, 08:13:33 PM
I report the VA tomorrow to see if they got all the cancer. I'm not unduly disturbed about the possibility that they didn't.
Best wishes for you too then!
Title: Re: Cancer, Living With
Post by: SnarlPatrick on November 30, 2019, 08:45:16 AM
I report the VA tomorrow to see if they got all the cancer. I'm not unduly disturbed about the possibility that they didn't.

Pulling for you. And for Brillig. Good luck.
Title: Re: Cancer, Living With
Post by: PANTS! on December 21, 2019, 06:31:08 PM
Bye for a while.

I was going to write about why, but sadly, this place is no longer worth the spoons. There are about eight good people here IMO. They tend to be lost in the torrent of vomit from the rest of you.

Maybe I'll come take a look again one day. Assuming the cancer doesn't kill me this time, it might be good for nostalgia one day.

I think I am with you.  The mods are constrained by the rules too much to clean up after the thread shitters.  Let Jae deal with the Somalian Libertarian paradise this place is becoming.  I am not that vested.