time is getting short

I never fully understood or appreciated those phrases you hear about people having fought their cancer valiantly, until now. I can't imagine anyone's being more of a trooper, more valiant in battle, than our Seaoat.

Sea, your pain must be a terrible anchor around your neck, and I wish it weren't so. May the PRRT work its magic soon, and well. Meantime I hope you can find some non-opioid relief, somehow, but if there comes a time when you just can't bear it any more, I hope you know there's no shame in relenting - you will never be diminished in anyone's eyes, as you've already proven yourself over and over and over again.

I'll just thank you once again for sharing this very difficult road with us. It's a rare privilege.

I'll just thank you once again for sharing this very difficult road with us. It's a rare privilege.



It has been a powerful two way road. It was very difficult for me to hear of Bob's. z's, Neko's, retired leo's struggles, but they shared the same with all of us. I received PMs from retired Leo right to the end.....his concern....my tumor,s in my lung, yet he was too weak to type any more and had to say goodbye, totally aware of his situation, yet he was concerned about my care. Neko and I would play in the sandbox everyone's favorite game.....get seaoat. She was so much fun, but I coulld tell in her posts after the first Illness that she just was not all there. You see a bit of your spirit is lost in the final battle. With Bob it was very hard for me because I was piszed about his medical care going back years, but it hurt nonetheless at the point that Bob gave up. He had fought a gallant battle, but he was always a realest who took pride in sorting BS out of the conversation. With Z it was special. The man posted here for years with quiet intelligence. He would hint to his disability talking about his leaving the service and working for Environmental agencies, yet he never let us know that he was in a wheel chair with progressive lost of his physical capability......no feel sorry for Z.....I found him to be incredibly strong....and it was a pleasure to know him as he shared in private PMs his challenges, he did this giving me techniques on how to help yourself get out of a chair when your body was failing you......he privately told me his secret to help me, trusting a stranger to keep his secret until his sad and unexpected death.

No we have all been given incredible opportunity to use social media in a positive way. The human experience starts and ends with the human brain learning. We all learn, but I first started posting on the PNJ sometime in 2003 when I realized that this exercise in social media has been filling my spare time for fifteen years. There are new vehicles in social media, but I really enjoyed when we could input news stories on the PNJ. It was a very powerful tool. This is more grins and giggles and after fifteen years you just have to smile.

RealLindaL wrote:I never fully understood or appreciated those phrases you hear about people having fought their cancer valiantly, until now.   I can't imagine anyone's being more of a trooper, more valiant in battle, than our Seaoat.  

Sea, your pain must be a terrible anchor around your neck, and I wish it weren't so.  May the PRRT work its magic soon, and well.   Meantime I hope you can find some non-opioid relief, somehow, but if there comes a time when you just can't bear it any more, I hope you know there's no shame in relenting - you will never be diminished in anyone's eyes, as you've already proven yourself over and over and over again.

I'll just thank you once again for sharing this very difficult road with us.  It's a rare privilege.

So well said . . . . . humanity on display . . . .

Man, sorry for the rough times, and I hope the pain will fade away quickly. Glad you're still in the fight, though. Hopefully things will bounce back and you'll get some more quality time after the struggling. You've got a hell of a lot of courage. Stay with it!

my arms have melted away with the wasting part of liver failure. I have about nine bruised areas on both arms which are beginning to turn black and blue from the failed IV attempts. My wife saw my arms this morning, and told me she was crying during the whole ordeal of techs trying to get an IV going. I am glad I did not see her. I did take control of the situation after one agonizing stick which my wife showed me as the tech kept moving the needle in my arms trying to insert the needle in the sweet spot. I told them I am walking out the door in two minutes if we cannot develop a plan. They went and got a tech from the emergency room. These photos do not show the bruising very well but you can see the wasting of the arm muscles.

So sorry. Humankind should not be subjected to this kind of pain and suffering. Don't let me get started.

Hope you sleep well and that the nausea stays at bay.

Hempworx.com
CBD oil sublingual for pain.

Good news......my body and the radiation are attacking my hormone levels which were the highest ever recorded at Northwestern for endocrine cancer.....the doctors are shaking their heads as I am getting messages about how excited they are, and I feel like I will not make it to next weekend. the graph says it all.

I released your lab results. You have had a significant reduction in your Chromogranin A, even with a little difference in the assays. This is great news!

Have a great weekend!

If this is great news, it sure feels like I have been ran over by a semi truck. I am tired.

OK, you feel as if you've been run over by a truck, but the fatigue is something you were surely expecting after PRRT, yes? Nothing new there.

I think the hormone level news is terrific! Maybe you can just do some R&R, forget about poker for a week or two, do some moving around if you can but just mainly recoup, give your ol' bod a break, take what nourishment you possibly can (Joani's suggestions sound good) and see what happens. Where there's life, there's hope, right?

forget about poker for a week

Geez, you sound like one of my poker buddy's wife. We will go to the quad cities on next Tuesday, and we get a free hotel room, sixty buck certificate for their steak house, and a fifty dollar free play. I am having a very serious problem with caloric intake. The steak dinner to date has always kept my appetite strong where I finish the meal. I love a good steakhouse wedge of lettuce with creamy blue cheese. I have no potatoes, just a filet with the wedge. Our concern is that I am eating half of what I did just a week ago.

In regard to resting, you know my theory......resting is part of dying. Exercise and work are part of living. I prefer living, and if I fall over dead at the casino, I will be smiling the whole time. Lots of tearing today as the good news means I am going to go about two weeks with my liver facing necrosis pain, which is a good thing, but on all my 11 surgeries where they attacked the liver tumors the discomfort from necrosis was hard. My problem is that I am convinced that staying away from the opiates and over the counter drugs has lifted a burden off my liver. However, the only feedback I am getting is out of the sixty or so people who have done the PRRT at Northwestern, I am the only one that did not throw up. I kept telling the doctors and techs on the first two procedures that the medical pot is miraculous with nausea. They are telling all the patients. Of course I copied the doctors at Northwestern when I went on my letter writing campaign to the Illinois senate.

This is an important battle as millions of Americans are suffering because big pharma does not want to let the world know that the poison they have been peddling has destroyed families and communities. I do not know why I am still here, and am having difficulty with the news. Some would see an opportunity for more life, but right now I only see it as a period for more suffering.......hopefully this will change, but the hurting has to stop first.....even if it is a couple hours. The hospice nurse came this afternoon and this is a new nurse for me, and she was pregnant, I insisted she get no closer than five feet.......I am hot for five days, and the granddaughters are coming saturday which will only be four days.....no hugs......they are the best part of continuing this fight. My oldest fourth grader hugged me at her house and looked up and said I love you papa.......she is aware. Never underestimate the mind of a child.

OK, well, Sea, you know I'm all for eating -- steak and a wedge sounds perfect.  And by all means do it your way as to activity (I knew you were going to say what you did), but you're the one who expressed how tired you feel.  Hope you can at least get some sleep at night.  THAT'S not part of dying, right? Part of life.
Your conflicting feelings about the good news are certainly understandable, as pain is a powerful factor.   What did the hospice nurse have to suggest on that score, as far as anything you're willing to do/take?
Hope you're sleeping well right now.   Goodnight all,    LL

2seaoat wrote:I released your lab results. You have had a significant reduction in your Chromogranin A, even with a little difference in the assays. This is great news!

Have a great weekend!

If this is great news, it sure feels like I have been ran over by a semi truck.  I am tired.

So thankful.

2seaoat wrote:

In regard to resting, you know my theory......resting is part of dying.  Exercise and work are part of living.  I prefer living, and if I fall over dead at the casino, I will be smiling the whole time.

Whatever motivates you to keep going, keep doing it. You'll rest when you need to. Meanwhile, keep doing as many fun things as you can handle, and always line up another fun thing for tomorrow.

There's an old Drive-By Trucker's song based on a real-life musician who was dying of AIDs, but even in his last stages he kept booking shows because as long as he had a gig lined up he'd have to show up to do it. Worked out well for him for a long while. The last year he was alive he played over 100 shows.

The Living Bubba
I wake up tired and I wake up pissed
wonder how I ended up like this
I wonder why things happen like they do
but I don't wonder long cuz I got a show to do

I'm sick at my stomach from the A.Z.T.
Broke at my bank cuz that shit ain't free
but I'm here to stay (at least another week or two)
I can't die now cuz I got another show to do

Don't give me no pity don't give me no grief
Wait till I die for sympathy
Just help me with this amp and a guitar or two
I can't die now cuz I got another show to do

Don't give me no preachin' no self servin'
I ain't no angel but nobody's deserving
I can dance on my own grave, Thank You!
but I can't die now cuz I got another show...

Some people keep saying I can't last long
but I got my bands I got my songs,
liquor, beer, and nicotine to help me along
and I'm drunk and stubborn as they come
chain smoking, guitar picking, til I'm gone

I ain't got no political agenda
Ain't got no message for the youth of America
'cept "Wear a rubber and be careful who you screw"
and come see me next Friday cuz I got another show...

Some people stop living long before they die
Work a dead end job just to scrape on by
but I keep living just to bend that note in two
and I can't die now cuz I got another show...

I won a big poker tourn last night... 12.6k. That's the 7th since June. Fun night.

PkrBum wrote:I won a big poker tourn last night... 12.6k. That's the 7th since June. Fun night.

Congratulations, awesome win.

gives you a little travel money this winter. It is fun when you get in a zone in poker.

Will you go into a coma or just suffer till the end?

Will you go into a coma or just suffer till the end?

I will get too weak to leave bed. Hospice at that point will set up a hospital bed in the house and medicate me to the end, or I can be transferred to their brand new facility just six miles up the road. We have visited it and it is amazingly family friendly for kids and family members. The pain is not impossible to deal with most of the time, and I have become numb. Going to try to play poker. We are bringing the wheel chair. It will not be long now, but my body just does not want to give up......my mind is another matter.

The end seems to be rushing at me. We took the wheelchair to the Casino Hotel. I could barely walk from the chair to the gaming table. I won a thousand dollars getting a straight flush in ultimate texas hold em. I however was too weak and ill to eat dinner with my wife who ate alone as she rolled me back to the room where I was in very bad pain. We are trying to force food down,but immediately histimines let loose and I gag trying to eat. I am doing ok with ice cream and hot and cold tea. I will keep everybody informed, but I am having difficulty lifting my laptop into my lap when I am in my chair. They gave me the road map of how the end would be, and they have been dead cinch correct. If I do not get nourishment in me, I will be gone in two weeks.

I know I've told you... but if you can eat ice cream try ensure. Hate hearing the down turn.

Hopefully you'll bounce back in a week again. Keep fighting..!!

Not a praying person here but am sending the strongest positive vibes possible across the miles.  I agree with Pkr (and also Joani, previously) that you should try a nutritional drink like Ensure if you haven't already.  Can't imagine how it can hurt....

Just hate that you're having to endure all this.  Hate it.

P.S. Sorry you didn't get to enjoy that steak.

Ice cream and an ensure type drink. You need the calories.

The ice cream will help. Also try some beef bouillon and chicken broth... that'll get some nutrients in there. And Gatorade also has some glucose that might help.

Hang in there, it may be a rough patch that'll smooth out once you're past it. I'm hoping that's what it is.

Joanimaroni wrote:Ice cream and an ensure type drink. You need the calories.

Ensure drink is an excellent source of 26 essential vitamins and minerals.