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time is getting short

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651time is getting short - Page 27 Empty Re: time is getting short on 1/18/2019, 11:14 am

2seaoat wrote:I am using a trick that Z taught me about grabbing my pants leg and pulling myself up......it works for now, but I see the end clearly now.

Try putting a belt around your thighs. It will keep your knees from splaying and help you get up easier. It will also help you sit more upright in your chair.

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652time is getting short - Page 27 Empty Re: time is getting short on 1/20/2019, 9:22 am

The problem is that I am losing my upper body strength. We are going to build a bedside commode where I have an electric hoist which will simply raise me to my feet from the bed and the bedside commode. The pain the other day was off the charts. I am not much for crying, but I wimpered all day unable to stop any of the pain and cramping from the wasting beyond anything I have experienced to date. I am taking pain pills......some days I just have to get up and do something outside the house to distract from the pain. We are thinking of traveling to Elgin Il casino where they have escargot appetizer........The girls come out on MLK school holiday and I will get more time with them but I will be entirely doped up. I guess the prrt is working because I am still alive, but some days I question why I continue to fight for every moment. I am watching some incredible football and basketball, and my guy Jimmy Butler has made the big time.......I will die with a smile. snail heaven........

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653time is getting short - Page 27 Empty Re: time is getting short on 1/20/2019, 9:31 am

My favorite song in sixth grade.  I loved singing this song with all my passion until my sixth grade teacher crushed me telling me I was tone deaf and singing probably will not work for me.  However, this song felt so good singing.........it will play on one of the tvs at my memorial....beat the drums slowly......



The other song I sang about the same time.  It too will be on the first tv depicting my early life as my musical tastes changed, but these were songs I would walk around singing.

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654time is getting short - Page 27 Empty Re: time is getting short on 1/22/2019, 7:55 am

Great day with the granddaughters sunday, and remarkably a pain free day. No explanation but bone mets were not that painful. Having a great Monday at Jumers. Lost money, but I have an appetite and I seem to be walking better from the wheel chair to the tables. I still am weakening, but I am beginning to have an appetite. I gobbled down some fish and chips as the white cod and crispy batter allowed me to get some food down.

I have not been posting because most days I have difficulty with the same. Feel great this morning and the typing is coming easy. I have so much to say about the "process of dying", and what a remarkable journey this has been. No pain this morning......celebration and hope.

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655time is getting short - Page 27 Empty Re: time is getting short on 1/22/2019, 9:45 am

Glad you had a good day and you were able to eat.

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656time is getting short - Page 27 Empty Re: time is getting short on 1/22/2019, 12:43 pm

2seaoat wrote: No pain this morning......celebration and hope.

Hot damn!  Celebrating and hoping right along with you, Sea.  Enjoy your day!

cheers   cheers    cheers

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657time is getting short - Page 27 Empty Re: time is getting short on 1/23/2019, 11:43 am

2seaoat wrote:Great day with the granddaughters sunday, and remarkably a pain free day.  No explanation but bone mets were not that painful.  Having a great Monday at Jumers.  Lost money, but I have an appetite and I seem to be walking better from the wheel chair to the tables.  I still am weakening, but I am beginning to have an appetite.   I gobbled down some fish and chips as the white cod and crispy batter allowed me to get some food down.

I have not been posting because most days I have difficulty with the same.  Feel great this morning and the typing is coming easy.  I have so much to say about the "process of dying", and what a remarkable journey this has been.  No pain this morning......celebration and hope.

Excellent! Smile Here's hoping for a lot more good days! Smile

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658time is getting short - Page 27 Empty Re: time is getting short on 2/8/2019, 7:18 pm

I will try to keep typing. We have gotten a wireless mouse which now sits on my chest and does not need much arm or hand movement. I can no longer lift the laptop and put it on my lap. My wife will get me set up in the hotel bed and then place the laptop on my chest. I now hope I can explain some of the symptoms before death. There are hours where your entire body goes into this tranquil state. You think it is just being sleepy, but there is an element in the absence of pain of something more.

Priorities entirely change. So in my case, I have lost all aptitude as to time, date. When I wake up I no longer know what day it is or what time. My wife has set up a daily sign which gives me the day and month.

I am in the final stages of death by cancer, and I am very fortunate that I can still use the restroom without assistance, and shower independently. The Last two weeks will involve my stopping eating, with some moisture to the mouth, but basically stopping intake. I will stop talking at some point, although will be able to understand. Usually the last two days will be in a coma. So the lost of feeling in my legs is the first clear sign of end times, but who knows, I may be golfing in a year......smile....not.

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659time is getting short - Page 27 Empty Re: time is getting short on 2/8/2019, 7:42 pm

Always glad to hear from you. You have taken us all on your journey and given us insight into your bravery and integrity while facing terminal cancer. How strong and admirable you are!

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660time is getting short - Page 27 Empty Re: time is getting short on 2/8/2019, 9:55 pm

Beyond my feelings and sense of loss... thank you for helping us understand by literally taking us with you through this journey. Your grace through this is a blueprint. I hope that I'm able to handle it with half of the courage you've shown. Thank you again.

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661time is getting short - Page 27 Empty Re: time is getting short on 2/9/2019, 2:18 am

What Joani and Pkr have said. You know how I feel, Sea, and I'll simply add my gratitude for all you've shared with us during this arduous journey.

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662time is getting short - Page 27 Empty Re: time is getting short on 2/9/2019, 3:30 am

Very good day today. Great lunch brunch with roast beef which I could eat and some tilapia. Won 2k playing mississippi stud with four nines. That flips from being a thousand down to being a thousand up. However, my legs failed three times today. It is time to probably set up for the final stretch at home, but going to these hotels takes all the pressure off Mrs. Seaoat as she enjoys wonderful meals without cooking, and we return home to launder clothes, but other than the growing responsibility to move me, she is having a really good time. Also, the electric wheel chair at the hotels can go from the bed to the toilet easily, and when I am in the hotel or casino the large handicap bathrooms allow me to drive right up to the toilet and no walking is required.....just the vertical lift. It is the the loss of strength in my arms and legs which has become so rapid. F cancer......I am still going to do the hotels and pushing the envelope, but as I listened to the house band and saw people laughing and celebrating a Friday night, I knew I may never come back this way again.

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663time is getting short - Page 27 Empty Re: time is getting short on 2/10/2019, 1:48 am

2seaoat wrote: as I listened to the house band and saw people laughing and celebrating a Friday night, I knew I may never come back this way again.

Makes you nothing but human, to have such poignant (and utterly touching) thoughts.

Glad you had a good day in any event, and glad Mrs. Sea is finding a way to make lemonade for herself.

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664time is getting short - Page 27 Empty Re: time is getting short on 2/10/2019, 2:49 pm

Enjoy every minute!

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665time is getting short - Page 27 Empty Re: time is getting short on 2/10/2019, 4:32 pm

What a wonderful day watching the granddaughter play basketball. Her mother was an exceptional athlete and people after the game were coming over to my daughter and saying she plays just like my daughter. It is amazing the intuitive feel she has for the game and she is quicker and faster than the other girls and will be six foot tall by seventh grade. My enjoyment is watching her peer group be empowered as they learn team work and the game. If I die in ten minutes, I would not trade anything for getting to watch her play......I never thought I would live to see her in a regular game with a ref.......I had a friend come up and simply say your granddaughter is remarkable. The younger is not handling my death well. My daughter and wife had to lift me off a couch and the look on her face was tear wrenching.........the oldest gets it......its about time together.....and sometimes that time may be less than pleasant.

We will spend Tuesday and Wed in hotels near Northwestern Hospital. Final scan and more lab work. Regular monthly shot, and then I talk with the oncologist who has kept me alive. Hell, If they have to roll a hospital bed into those basketball games......so be it......F cancer.....I am living life fully until I can no longer move. With all this pain, I have never been happier about life and what will come to me in the morning. I have just about ran out of high protein tasty food. I just went through some medical journals and our strategy of protein foods is a winner for more longevity......but finding things to put in your mouth when your body and the cancer is rejected everything.....it is a painful battle.

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666time is getting short - Page 27 Empty Re: time is getting short on 2/11/2019, 7:35 am

So happy you were able to watch your granddaughter play basketball. It is exciting to see your grandchildren excel. I know how proud you were.

Seaoat ask your doctor about a feeding tube. It really helps with supplemental feedings. You need the nutrition.

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667time is getting short - Page 27 Empty Re: time is getting short on 2/14/2019, 1:33 am

doc said that I have to get weight on or its curtains. Still waiting on blood tests and scan results. With as little as fifteen pounds will give me time because he stressed the prrt will not hit full stride until two more months.

We are spending the night in the city and in the morning we will check out whole foods, and probably watch the girls basketball game sat. To give you an example a big breakfast from Macs is about 1300 calories and I used to snarf those down like they were nothing. I cannot eat but thirty to fifty percent of one now which is a huge improvement over a month ago. I have been given hope if I work on nutrition, I can buy quality time. I could not even finish a chicago dog yesterday for lunch. So the doctor said increase the frequency of eating and drop quantity down to what I can comfortably get down. I will be doing leg exercises and will begin walking when and if my weight returns to 165. I am at about 159. I won two hundred dollars at Harrahs Joliet, and we were comped the room. So this journey is pretty much being funded on blind luck at the tables. I am beginning to talk to people as my jaw muscles have relaxed a bit....but not for long...

I honestly, nor does the doctor fully understand why I am still alive. Watching a great deal of NBA basketball and I am pain free tonight.......

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668time is getting short - Page 27 Empty Re: time is getting short on 2/14/2019, 1:04 pm

They could put an ng tube through your nose to bypass the reflex you're dealing with. Maybe that's something to keep in mind for later.

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669time is getting short - Page 27 Empty Re: time is getting short on 2/14/2019, 1:49 pm

taste and hunger are improving, and I almost had a normal BM. I had oysters last night. japanese soup which I will reheat and eat this afternoon.....delicious. meatballs from subway, just the meatballs because the bread starts the mucus response.
today salmon and mushroom bisque soup. We will go to another casino for friday night and will do oysters rockefeller and prime rib. I am still having major problems with bread. So a hamburger quickly causes the mucus reaction,yet these gourmet hamburgers without anything on a plate, I can eat double the amount of burger. I feel like I am failing on the weight, but the food is good.

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670time is getting short - Page 27 Empty Re: time is getting short on 2/14/2019, 3:10 pm

It's really not that invasive incase things are too difficult close to that 2 month target. I really hope you make that and that you can gain some ground back. Sounds like a very good goal at this point. Or Custer's last stand... lol.

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671time is getting short - Page 27 Empty Re: time is getting short on 2/18/2019, 2:13 am

2seaoat wrote:doc said that I have to get weight on or its curtains.  Still waiting on blood tests and scan results. With as little as fifteen pounds will give me time because he stressed the prrt will not hit full stride until two more months.

Any word yet on labs and scan results you can share? Hope the news was decent.

Rooting for you for gaining some weight to give the PRRT its best chances.

Keep in touch, please.....

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672time is getting short - Page 27 Empty Re: time is getting short on 2/18/2019, 4:37 am

The tests reveal continuing and serious drops in liver functions, but pretty good numbers on the rest. Literally, I live if I can stop the wasting and put on about fifteen pounds to just get the cancer stable for a period of time. European studies of PRRT show a year to six year extension on healthy early patients. My levels probably will get me a year which as painful and messy as this is, I will take still being able to bathe and use the bathroom by myself. The pain however indicates this will be a battle to the end. We head to Jumers for three days of free hotel and food.............this has been fun and is better than sitting in a hospital bed watching tv. It is fun to talk to people, and my neck muscles are holding my head up better so that will be an option which I enjoy.

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673time is getting short - Page 27 Empty Re: time is getting short on 2/18/2019, 11:32 am

2seaoat wrote:The tests reveal continuing and serious drops in liver functions, but pretty good numbers on the rest.   Literally, I live if I can stop the wasting and put on about fifteen pounds to just get the cancer stable  for a period of time.  European studies of PRRT show a year to six year extension on healthy early patients.  My levels probably will get me a year which as painful and messy as this is,  I will take still being able to bathe and use the bathroom by myself.   The pain however indicates this will be a battle to the end.  We head to Jumers for three days of free hotel and food.............this has been fun and is better than sitting in a hospital bed watching tv.  It is fun to talk to people, and my neck muscles are holding my head up better so that will be an option which I enjoy.

You continue to impress Mr. Oats . . . . I am so happy for you to continue to defy the experts . . . . . wish I had a fraction of your (mental) toughness,

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674time is getting short - Page 27 Empty Re: time is getting short on 2/18/2019, 12:14 pm

knothead wrote:. . . . I am so happy for you to continue to defy the experts . . . . . wish I had a fraction of your (mental) toughness,

Knot, I heartily concur with the first part but not the second. If you think you're not mentally tough, you're fooling yourself. Just from your candid posts the rest of us can see plenty of fortitude in you, and I do mean plenty -- facing, as you are, all you're dealing with, yet still demonstrating stoicism, bravery and determination. You are one special and very strong dude, and don't let anyone (most certainly not yourself!) tell you any different. I'm not kidding.

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675time is getting short - Page 27 Empty Re: time is getting short on 2/18/2019, 10:32 pm

Took a beating at the tables. The good restaurant is closed on Mondays. So it was potato soup and fried Haddock...........got most of it down, but we will drive to downtown Moline to get oysters.......oysters are keeping me alive. Having a very painful day, and right when you think you may be actually surviving, you get reminded that you are terminal.

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