Author Topic: Cancer, Living With  (Read 12819 times)

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Online Harry Black

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Re: Cancer, Living With
« Reply #120 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.

Offline Tatyana

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Re: Cancer, Living With
« Reply #121 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.


Offline gcason

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Re: Cancer, Living With
« Reply #122 on: August 10, 2019, 12:04:24 AM »
You are inspiring, brilligtove. Truly.
My name is gcason and I approved this message.

Offline brilligtove

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Re: Cancer, Living With
« Reply #123 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.
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Offline brilligtove

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Re: Cancer, Living With
« Reply #124 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
« Last Edit: August 11, 2019, 06:18:39 AM by brilligtove »
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Offline PANTS!

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Re: Cancer, Living With
« Reply #125 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.
Now where I come from
We don't let society tell us how it's supposed to be
-Uptown, Prince 👉

The world is on its elbows and knees
It's forgotten the message and worships the creeds

Offline brilligtove

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Re: Cancer, Living With
« Reply #126 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.

* brilligtove cries again because FFS
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Online Morvis13

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Re: Cancer, Living With
« Reply #127 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.
Murphy's Law: Anything that can go wrong will go wrong.
Morvis' Law: Anything that does go wrong is my fault.

Offline brilligtove

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Re: Cancer, Living With
« Reply #128 on: August 11, 2019, 10:48:51 AM »
Not a lot to say. The last few weeks have been a shitshow.
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Offline brilligtove

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Re: Cancer, Living With
« Reply #129 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?
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Offline brilligtove

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Re: Cancer, Living With
« Reply #130 on: August 11, 2019, 09:34:56 PM »

Walter before his first haircut as a puppy.



Still Wally. Scared the crap out of people in the street. "BEAR!"



From bottom to top, Walter lazing, Agatha and Scarlett playing, and a random other dog.



Walter, just before the end.
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Offline CarbShark

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Cancer, Living With
« Reply #131 on: August 12, 2019, 12:19:09 AM »




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
« Last Edit: August 12, 2019, 10:59:45 AM by CarbShark »
and Donald Trump is President of the United States.

I'm not a doctor, I'm just someone who has done a ton of research into diet and nutrition.

Offline Friendly Angel

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Re: Cancer, Living With
« Reply #132 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.
Amend and resubmit.

Offline brilligtove

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Re: Cancer, Living With
« Reply #133 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.
« Last Edit: August 20, 2019, 09:45:21 PM by brilligtove »
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Offline brilligtove

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Re: Cancer, Living With
« Reply #134 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.
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