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time is getting short

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526 Re: time is getting short on 11/16/2018, 2:35 pm

PkrBum wrote:I'm really sorry. You've helped us all by being so open though this. I appreciate it... thank you.

Perfect post, thanks pkr!

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527 Re: time is getting short on 11/28/2018, 6:17 am

I just cannot stop the wasting. It is becoming difficult to use my arms as the muscle is melting away. I have lost almost sixty pounds. compare this photo with one just a month ago.......I will soon just be a skeleton.

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528 Re: time is getting short on 11/28/2018, 10:34 am

Proteins.

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529 Re: time is getting short on 11/28/2018, 12:46 pm

Disturbing indeed, Sea. Sorry to see.  But if Joani's right about protein, how about those little hot dogs in a blanket, like these?

https://www.walmart.com/ip/Nathan-s-Beef-Franks-in-a-Blanket-7-5-oz/37248763

And here are all the rest of the cocktail appetizers on Wal-Mart's website:

https://www.walmart.com/browse/food/frozen-appetizers/976759_976791_1001411

Lots of protein among them, including even bite sized cheeseburgers!

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530 Re: time is getting short on 11/28/2018, 4:04 pm

I cannot thank all of you enough for the ideas. It has been a home run as we have gotten new treats. I just had a bowl of lobster bisque which was frozen at walmart. She got the fruit, and the best part the O'doul's beer is flushing my mouth of the mucus which immediately forms when I try to eat or drink. The beer is flushing my mouth clean and the flavors allow me to consume the food without gagging. We are going to do a trial run outside the house today. We are going to a restaurant which has a great salad bar and great comfort pastas. The little bit of eating each day without gagging gives me more energy. We will see.

If the trial run works, we will go to the quad cities to Jumars casino and I will try to play table games. They do not have a wheel chair with controls, and our wheel chair fits in the back of the prius, but I have no strength in my arms to move the chair without my wife. This means she has to stay near the table if I suddenly need to go to the room. We are going to talk to security to see if they could wheel me back to my room so she can relax while I am playing.

The mental challenge of dying is setting up an agenda each day to make the best of the situation. The wasting is now getting quite significant, but I am thankful for all those years in high school I worked on three car dealership lots as a maintenance man after school. It required that I pushed a lot of cars.....I was the guy who pushed as the salesman sat and steered. The result with all the sports were huge leg muscles. They have been the foundation of my mobility, but now I have seen my calves waste away and now the final battle my once huge thighs..........I am looking like a sixties rock star on speed....skin and bones.......but with a bit of an attitude. F cancer

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531 Re: time is getting short on 11/28/2018, 4:28 pm

Lol... i agree... F cancer. Glad to hear some upswing. Slay em at the tables friend..!!

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532 Re: time is getting short on 11/28/2018, 4:31 pm

2seaoat wrote:I am looking like a sixties rock star on speed....skin and bones.......but with a bit of an attitude.  F cancer

cheers   cheers   cheers   cheers

Don't forget to let us know how the trial run goes!

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533 Re: time is getting short on 11/29/2018, 12:24 pm

I agree. Cancer sucks.

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534 Re: time is getting short on 11/30/2018, 6:44 pm

Had a wonderful time at the hotel/casino. It was good to see Mrs. Seaoat laughing, and we won for the fifth out of six visits which I guess off sets the death news. I ate a little at the lunch buffet today and my pain was ok. I could walk from the wheel chair to the tables. I love their virgin bloody Marys with extra olives.......I fiddle about with that drink for an hour and it takes my mind off the cards digging for ice or olives.

My birthday is next week so we will take two days at the hotel as we have received our December coupons. I cannot eat much but they give us fifty bucks toward their steakhouse where their steak wedge salad is excellent. When the doctor said I would probably be gone in September, I never thought I would make it to my birthday. The final treatment is on the 12th which is a bummer because on December 12 they have all you can eat lobster for one hundred of the black diamond card holders......My wife does not think I will survive the final treatment......so I have a couple days to say screw it.....pass the lobster.....I am done with this radiation and needles........

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535 Re: time is getting short on 11/30/2018, 6:57 pm

The other thing about the visit was all the mirrors in the hotel's beautiful bathroom. I finally got a three dimensional look at my poor skeletal remains. I started laughing because with my legs disappearing I look like a holocaust victim, but I also look like John Holmes the porn star because there is no meat on my body and little seaoat is getting bigger in relation to what is left of my body. My wife just laughs at my rear view as all those years of athletics had created large buttock muscle which has now all folded and hanging where my butt once was.....we started giggling that I may become an internet sensation as dirty grandpa the porn star.........life is too funny, and I honestly would love to post a photo, but I would end up in jail, and innocent people might be jumping out of buildings. Shocked

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536 Re: time is getting short on 11/30/2018, 7:54 pm

Lol... glad to hear that y'all enjoyed yourselves. Tough decision on that treatment. Afraid there's no good choice.

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537 Re: time is getting short on 12/1/2018, 2:12 am

Thanks for the full descriptions and all the laughs, Sea.  It's simply great the way you and Mrs. Sea can giggle with each other in the face of your body's deterioration.  What a mental picture you've provided!  lol

Let us know what you decide about the 12th.   Lobster (my favorite food in the world) sure seems like a helluva fine way to go....but oh, such a tough choice.   Have to wonder:  Do you know whether or not there are any recorded rescues/significant life extensions by PRRT at the stage you've now reached?  Of course, you're a pioneer in so many respects so who knows anyway....  I do also wonder, tho, whether or not Northwestern has any restrictions in terms of condition before they'll refuse the treatment. I seem to vaguely recall your concern about that many months ago.

In any event, Happy Birthday in advance!  Is it 66?  I lost track.  

Selfishly, am hoping your birthday will bring both you and me good luck next week.

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538 Re: time is getting short on 12/1/2018, 2:27 am

2seaoat wrote: I cannot eat much but they give us fifty bucks toward their steakhouse where their steak wedge salad is excellent.

Just for fun I looked for and found that Steakhouse Wedge Salad on Jumer's DJ's Steakhouse restaurant menu. Sounds very good indeed.   That Blackberry Feta Salad sounds good, too; my husband would probably choose it since he's a fruit lover.

And wow, the steaks!  Heart attack on a plate but worth it, I'm sure.  Smile

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539 Re: time is getting short on 12/1/2018, 7:55 am

The blackberry feta does sound good. The way it works is I take about four bites of whatever food is served, and wife finishes it. Any food consumed buys me a little time. The PRRT has had incredible results extending life by as much as five years, but they have a very marginal record treating the advance stages of the disease. I will do the treatment only because as the record holder on the hormone level my completion of the cycle may help the doctors advise the next high hormone patient. At this point surviving in a 170 lb body is going to be tough. Sometimes quantity has nothing on quality. If I could gain twenty pounds I might have a semi quality of life, but the truth is with Endocrine cancer once the wasting has commenced there is little to do but wait.

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540 Re: time is getting short on 12/1/2018, 9:30 am

I admire your spirit. I'd like to think I'd make the same decision for the same reasons. At least there's a small chance of extending your life. Just brace yourself for the 10 days after the treatment. You know it's going to be tough.

Best of luck..!!

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541 Re: time is getting short on 12/1/2018, 12:44 pm

PkrBum wrote:Just brace yourself for the 10 days after the treatment. You know it's going to be tough.

Understatement of the year, it would seem.  

Can only hope the sacrifice - if it comes to that - will do what Sea hopes, i.e., help others down the line.

Very fine spirit indeed.

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542 Re: time is getting short on 12/1/2018, 11:30 pm

Hoping for the best!

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543 Re: time is getting short on 12/3/2018, 3:40 pm

We are having to fool my body to get liquids and food. The non alcohol beer has been great because it dissolves the mucus in my mouth and clears my palate so the taste buds enjoy the food before being drowned in mucus. I have been visiting hospice internet sites and it is remarkable how similar the death march is. This food battle is critical. I just got a craving for a quarter pounder Mac which I have not had one in about four years......when she gets it, I will eat two bites and shut down......if it stimulates the taste buds I might be able to finish the burger. I really like the new apple pies at Macs.

Hoping I can enjoy the hotel for two days this week to celebrate my birthday. My thighs are now struggling with getting me up. You just have to keep pushing the envelope, but honestly......some days.....you are just too tired.

She is also going to try to get some more lobster bisque with some exotic crackers. I am not a hot sauce person, but I am finding that hot in my soup and bloody marys just clears the taste buds.

Enjoyed the youngest granddaughter coming out Sunday and wanting to take a bath. She has gotten into the depth of our tub and all the bath additives my wife has. It is hilarious as she spends about an hour taking a bath every time she visits. I know my wife loves her baths but this is crazy.

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544 Re: time is getting short on 12/4/2018, 2:25 am

LOL on the granddaughter's baths - not crazy at all if she really enjoys it, seems to me...and she'll have the memory and story of bathing at her grandmother's house, for the rest of her life.

So am wondering how the quarter pounder went down? Also the lobster bisque?

I, too, hope you get to enjoy a couple of days at the hotel this week for your birthday. Heaven knows you deserve it! Let us know.

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545 Re: time is getting short on 12/6/2018, 6:45 pm

lost one hundred bucks and had a wonderful two days and nights at the hotel/casino. I cannot eat much, but the variety and tasty nature of the meals kept me hydrated and basically fed. The weakness requires the house being rearranged as the hospice folks put certain things in next week.

I still was able to shower and use the restroom without assistance, but Mrs. Seaoat took me everywhere by wheel chair. The pit bosses and dealers are all very sad because they have watched the decline as we have utilized the free bonuses they give for the last six months.

My wife had to hand the lap top to me to post this. I did not have the strength in my arm to reach over and bring it to my lap. However, at least after an email the nuclear medicine people are going to allow me to have my lab work and IV done at the same time to minimize the sticks. Got an email and they have made the change. It has been a good fight, but honestly I am very tired.

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546 Re: time is getting short on 12/6/2018, 8:23 pm

They have agreed to do one stick. We have always left around four am to get to the hospital in downtown Chicago, but with my frail state we have decided to get a hotel room at the hospital on Tuesday. I am about to descend into my final hell and all I can think about is all the great restaurants within four blocks of the hospital. My wife did negotiate a refund if I die before Tuesday night.

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547 Re: time is getting short on 12/7/2018, 10:26 pm

Had a visit from a friend here in town this afternoon.  He is a retired Navy Chaplin who is incredibly intelligent as he has traveled the world.  He wanted to know what the final arrangements were going to be.  He hinted he wanted to give the eulogy.  I have a retired fire chief who wants to do it. I personally do not want any words said at the memorial.  We will have people come into the community center and sit and enjoy some food and look at all the photos.  The stories at the tables will be much better than a sermon or eulogy.   They will be real and probably inappropriate.

I spoke with hospice nurse and we are go on the 17th with hospice.  We had to delay the hospice because of the European PRRT treatment is deemed to be curative and you cannot be on hospice during such treatment.  No big deal because a week after this last treatment, I will be barely hanging on and the delay is fine.  Dying can be complicated.

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548 Re: time is getting short on 12/7/2018, 11:11 pm

Short Eulogizing can be a comfort to your family!

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549 Re: time is getting short on 12/11/2018, 12:55 am

Chicago hotel Tuesday afternoon. Prrt wed morning. I doubt I will be able to post much longer. It has been a long and hard journey, but there is a degree of comfort as it comes to an end.

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550 Re: time is getting short on 12/11/2018, 1:17 am

Best wishes. Neutral

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