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time is getting short

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176 Re: time is getting short on 6/28/2018, 7:51 pm


Seaoat, I'm playing this song for you because I don't seem to be able to say much here:

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177 Re: time is getting short on 6/29/2018, 10:25 am

Excellent! Glad to see good news. Smile It's always a good sign when the doctors are getting excited about your progress. Hope it keeps continuing in the good direction. Smile

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178 Re: time is getting short on 6/30/2018, 7:39 pm

Very very very tired. I am hot until Monday at noon and my wife is rubbing my legs with a wooden spoon to give me comfort. She stays clear otherwise. We are bagging garbage separately, and laundry. I am not using cloth towels to wash my hands, rather paper towels which will be disposed together. The hospital after my procedure took everything down to basement storage areas where it sits for a couple of weeks as the half life of the radiation renders the waste inert and harmless. I always wondered what they did, and they simply hold it until it is inert and use a geiger counter and then release the waste into the normal medical waste. Pretty cool. I am pretty sure we are too late with this procedure. I had good appetite for a couple days after getting back on my sando shots, but now they warned me about the radiation and nausea. I have only thrown up once in the last year from the illness, and they expected during the procedure that I would as they had bowls for me. They said I tolerated the procedure well, but I thought the two weeks of incredible weakness was hype, but I think with the massive weight loss my margins are very close. The dog is freaking out because I will not let her get in my lap while I am hot....she does not understand, but has stayed close to me for about three weeks.....dogs know.

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179 Re: time is getting short on 7/1/2018, 12:31 am

So are you able to take any nutrition at all, Sea? Hope you can manage a little something.
Thank you for sharing this very difficult part of your journey. It's disturbing and fascinating at the same time, in an empathetic sort of way. May you be wrong about its probably being too late!
If only fatigue were the worst of it... In any event, hope you can get some restful, restorative sleep, and thanks again for keeping us in the loop. Wishing you and Mrs. Seaoat the strength necessary to get through this. It seems that if anyone can handle this, you can, even in your reduced state, but it can't be any fun.

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180 Re: time is getting short on 7/1/2018, 2:21 pm

Ever since I was a child, when I felt Ill, I could eat rice crispies and feel better. So that is what I am eating in the mornings as the grits and eggs, french toast, bacon, and scrambled eggs have become to impossible to eat without immediate nausea. I follow breakfast with apple sauce and last night I tried some mac and cheese, but simply could not eat any sizeable portion without the nausea.

This however is much better than the 12 bathroom trips a day as it is only about six now. I broke into some serious sweats last night and took a shower. At my elbow I saw the wasting of my bicep. It was the first time that I can honestly say I was a bit shocked. You know you are losing weight but when you see loose skin hanging where muscle was once abundant, you take in the power of cancer to consume the body.

We are going to try KY fried chicken this afternoon, and she is getting a couple of steaks, potatoes, and fresh asparagus. We will have a salad and I will simply force as much down......with steak.....I love it so that will not be hard. I started this journey ten years ago. I never knew if what is happening now could have happened years ago. You wait knowing there is no cure, and that it is a very slow cancer, but when the wasting starts it is quite difficult, and the worst part is the impact on family and friends when they see the wasting. So I sit and enjoy youtube music in my chair talking with the wife about when we were younger, the grandkids, and her hate of trump. She really hates the man and everything he stands for and believes he is a pig. I sometime think he has sixty percent of people in this country repulsed like they just stepped in dog chit.
I think I will get a cancer massage on Tuesday when I am no longer hot. It is incredible when all else is failing how sensitive the remaining muscle and skin is to touch. It gives me great relief from the bone met pain, and after a foot and leg massage I simply melt into peaceful sleep. Hospice will provide it twice a week. I will not know if the PRRT took for a couple weeks, and have labs in four weeks to determine if I can get the second treatment. All is good and I am in wonderful peace.....until I listen to Mrs. Seaoat rant about Trump, and then I question why I did not spend more of my life fighting evil.......

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181 Re: time is getting short on 7/1/2018, 9:02 pm

Hoping you do well with your food choices. Steak is my favorite but have to limit myself.

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182 Re: time is getting short on 7/2/2018, 1:00 am

Biting my tongue on the steak thing.  

Hope you were able to keep something down, Sea.  Can't imagine how fried foods would be digestible (they're off my own list for now, if not forever), but what do I know??  Bupkus.  Did the docs give you any dietary suggestions, or simply advise to eat what appeals?  Curious, but NOMB. Do KFC's mashed potatoes work?

My mom often fed me Rice Krispies for breakfast and you just made me nostalgic for it -- and for her, long gone....

The massage Tuesday sounds like a splendid idea and I hope it can be arranged, along with others soon to follow.  Something to look forward to, and beyond well deserved.

As for Mrs. Seaoat's hatred for Trump, surely she knows beyond a shadow of a doubt that she's far from alone.   The mere sound of the (poor excuse for a) man's voice coming over the TV in this house is enough to make both of us cringe, grit our teeth and change the channel or at least press mute.  

And surely you know, Sea, that the state of the greater world in general -- and the existence of this disgusting human in the Oval Office -- is far from anything you ever had or have substantial influence over (beyond, in his case, a single vote or maybe the few votes you affected with your signs and other anti-Trump efforts).  Like most of the rest of us mere mortals, you've likely done the best you could in life.  Please don't beat yourself up; it's counter-productive (if not, frankly, a tad egotistical,she says ribbingly).

Now I'll just have to try to follow my own advice on that last.  Ha.

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183 Re: time is getting short on 7/2/2018, 3:23 am

Mrs. Seaoat has been blessed with enlightenment and awareness of the ancient evil that now surrounds us all.

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184 Re: time is getting short on 7/5/2018, 4:35 pm

The whites of my eyes have become very clear. For ten years they have been very blood shot. They say the eyes can tell a person much about their general health. I am very encouraged by this, but the nausea has really got goofy. I have to have the door to the kitchen closed because the smells make me sick. I cannot watch certain commercials because they make me sick. The medical pot which is not real effective on seven or above pain is very effective with nausea and I have increased my doses by four fold. I am noticing some hunger pangs which I have not had in four weeks.

My hospice nurse is a strong farm girl with four young children who live nearby. I love a firm handshake and she has a great handshake, but I have gotten so weak, I think she could have easily out squeezed me....... She will visit every week and take vitals and monitor the PRRT as to whether it can slow down the wasting of my muscles. She made me a little uncomfortable admiring my slim ankles which were from years of basketball as we are in farm country where most of the immigrants were Irish in the 1850s and as my wife said growing up in an all Irish farm town......Irish have thick ankles. I have monkey arms and ankles which my wife always commented were like Jordan's which served me well jumping and blocking shots playing ball until I was fifty and we both found it amusing as she examined the ankles which are a very important part of monitoring heart function as the ankles will swell with heart issues. My blood pressure is perfect, and now my potasium is in the normal range. I am having a relative low pain day, and I am encouraged. I will try to play poker with some golf buddies next wed. It will be hard with the wasting, and I have only left the house once in a week, and I just do not know if I will hold up.

I have to get on the bobcat and repair flood damage, but my wife will probably have to assist me getting out as my balance with the wasting is off. This dying stuff got real serious three weeks ago. I honestly did not think I would make the September date my surgeon thought would be the month where I would rapidly decline and pass. The PRRT is like a life preserver being thrown as I go over the falls.......can I hold on so I can be reeled into a couple years of life........the nurse, my children, friends, wife, and I all wait to see. It has been a great journey and I look forward to each new day.....Scott Pruitt quitting especially makes me happy.

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185 Re: time is getting short on 7/5/2018, 5:33 pm

2seaoat wrote:Scott Pruitt quitting especially makes me happy.

cheers   cheers    cheers

You and me and a whole helluva lot of other people, Sea.  What a piece of crap that man was.  Just hope his assistant/replacement isn't worse.

Thanks again for a full and interesting health report, which sounds encouraging indeed, even though the nausea has to be unpleasant as hell.  I guess the only good thing to say about that is, since it was expected, it means something is working, yes?

In any event I'm sure you can add most forum members to the groups who are waiting, watching and hoping, so thanks very much for keeping us in the loop.

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186 Re: time is getting short on 7/6/2018, 1:07 am

I think Sanders and all these fascist liars know they are telling bold faced lies, but think it is political, but the American people who are hassling evil in public know the difference......they are simply evil people with selfish agendas of selfish career motivation over morality and sanity. I am proud of the mother who confronted him......they are all cowards, and like a cockroach when the kitchen light is flipped on......they are scrambling for cover......good people must stand up to evil.

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187 Re: time is getting short on 7/6/2018, 10:49 am

Wrong thread dorkapotomus. It's nice see you posting more tho... that's a good sign I think.

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188 Re: time is getting short on 7/7/2018, 11:50 am

I have always had a positive attitude about life. You win some and you lose some, but playing the game is sure fun. Well, I got horrible news on my chrom A test. My surgeon's PA told me at 40k was as high a level as she had seen. It should be below 200 and for the last ten years mine has varied before and after surgeries between 400 and 4000. The higher levels spread the cancer. I got my results from the labs before the PRRT. 80,000.

I have been thinking about going to a trophy shop and making a trophy which says "thank you Northwestern for helping me have a quality of life at 80,000 chrom A" You see all these people on the cancer blogs in fear and panic at 1,500, and nobody telling them anything, as they see immediate death. My doctor would simply say it is "variable". I figure as the new record holder at NW I can have a little fun with the inevitable, while allowing the doctor to reach over to the desk and show the trophy......the guy with 1,500 will feel that there is some hope and time. There is no hope in my regard. I am melting away, but have regained my appetite. I think my surgeon's prediction of six months will be right on the mark. I will be dead between now and labor day, and my wife and I got quite a perverse laugh at the 80k.......she just said as we were both laughing........are we sick? Nope.....just playing the cards that have been dealt and having some fun. All is good. I drove the car for the first time in three weeks and ate an entire big breakfast.

Component Your Value Standard Range
Chromogranin A 80176 ng/mL 25 - 140 ng/mL

dead man typing.

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189 Re: time is getting short on 7/7/2018, 2:29 pm

2seaoat wrote:I will be dead between now and labor day

dead man typing.

But maybe not if you keep eating so well as you did this morning...?  

When is the second PRRT treatment?

In any event I like the trophy idea!

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190 Re: time is getting short on 7/8/2018, 3:25 am

August 27th is the second PRRT. I am struggling get enough calories as the wasting is geometrically increasing. My surgeon will be right on the money......September. I am reading how to repair wasted muscles after cancer treatments, and I need to exercise. I am cutting grass in the morning. I will be taking walks expanding the distance each day. They recommend lean steaks, pork chops, fish, and shakes to rebuild the muscle. We will probably try a steak Sunday night. I drove the car with no problems, but I am having problems getting up......I have NOT slowed the wasting with the radiation.

The trophy will help the doctor to communicate that endocrine cancer is slow and that you can get terrible numbers, and still have quality. I just saw a special on steve jobs at the end, and his shoulders look exactly like mine right now.....my wife and I discussed that the time is getting near and probably are going to spend some time getting some photos onto digital format for presentation at my memorial. I coached a lot of basketball, soccer and baseball over the years and I have decided I want to have the memorial in the basement of that community center. I will be cremated. My daughter does not like my plan and would prefer we do a visitation at a funeral home......I had to put my foot down......funeral homes never made sense to me as a kid, it seemed so sad. I want people to be happy, enjoy a catered buffet and sit down and talk about all the fun.....no dark and dreary.......just a celebration of life. Too funny because I taught my children to be independent, and now I think my daughter is concerned what people will think. I hope they do think.

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191 Re: time is getting short on 7/8/2018, 6:30 am

That's what we did with my mom except that we held the memorial at her property. It was very nice. No one cried that I saw... not even her grandchildren. We told stories and laughed and ate well. Good memory.

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192 Re: time is getting short on 7/8/2018, 3:02 pm

FWIW, Sea, I like your memorial celebration plans.  Good for you, and I'm glad you put your foot down.  My husband won't have anything to do with funeral homes, either, though for different reasons -- he sees them as vultures.

Still -- and not that my feelings matter in any way, shape, or form -- I will confess to having some trouble accepting that this is finally and truly happening, I guess because there've been so many 'reprieves, if you will, over the years.  I probably won't believe it until and if Mrs. Sea tells us so.

But dammit, Sea, don't go!!!!

(Sorry.)

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193 Re: time is getting short on 7/8/2018, 6:38 pm

We all go. I hope over the last ten years tracking the ebb and flow of a cancer battle, people will be less fearful. I do not want to be flippant, but as a poker player you have a lifetime of bad beats which prepare you for things going bad. The lawn cutting was great. I went very very slow so I would minimize the jolting, and actually got a pretty good workout on the arms with the zero turn. I will run the bobcat in the morning and start scrapping the mud off the gravel roads which after the flood must be removed. I had a wonderful pork chop sandwich for lunch and a baked potato, and ate almost all of it. Walking much more, and two weeks ago I did not think I would ever get out of bed or my chair. I am sure my wife will post for awhile after I am gone.....a rare new member on the forum.

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194 Re: time is getting short on 7/8/2018, 8:30 pm

You're right, of course, that we all go.  No one gets out alive.   Still one of the suckiest truths about life, but what it is, it is.

Yes, Sea, doubtless your 10 year saga will help some folks be less fearful, though we all know your access to outstanding, leading edge care was a big factor, and it's just reality that not everyone will have that privilege.  Still, I'm glad you did.

I gotta say it sure doesn't make your imminent demise any easier to grasp when I read about good meals and, especially, your successful mowing and planned Bobcat work.   But keep on keepin' on!  It's all just amazing and crazy at the same time.

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195 Re: time is getting short on 7/8/2018, 8:32 pm

2seaoat wrote:I am sure my wife will post for awhile after I am gone.....a rare new member on the forum.

She's rare and special all right, and will most assuredly receive a very warm welcome here.

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196 Re: time is getting short on 7/9/2018, 10:02 am

I rarely post anymore but felt compelled to add my two cents worth on Mr. Oats and his remarkable journey . . . . in fact, one of the principle reasons I even visit the forum anymore is to keep track of Mr. Oats as I have enjoyed his posts and his sometimes wise views. It saddens me greatly as I'm sure others have similar feelings. I would be dishonest if I did not say that now it is my time in this barrel of life because I have been diagnosed with a high grade aggressive malignancy on my bladder . . . . it does not compare with Mr. Oats illness or the millions of others who face very consequential medical circumstances. I am scheduled for surgery tomorrow morning at 7:00 AM.

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197 Re: time is getting short on 7/9/2018, 10:37 am

knothead wrote:I rarely post anymore but felt compelled to add my two cents worth on Mr. Oats and his remarkable journey . . . . in fact, one of the principle reasons I even visit the forum anymore is to keep track of Mr. Oats as I have enjoyed his posts and his sometimes wise views. It saddens me greatly as I'm sure others have similar feelings.  I would be dishonest if I did not say that now it is my time in this barrel of life because I have been diagnosed with a high grade aggressive malignancy on my bladder . . . . it does not compare with Mr. Oats illness or the millions of others who face very consequential medical circumstances.  I am scheduled for surgery tomorrow morning at 7:00 AM.    

Yikes! Good luck with the surgery. I'm sure it'll come out fine, but I'm sorry you're having to go through something that un-fun. Hope the surgery goes well and the recovery time will be quick and painless!

And I second everything about Seaoat. He's a tough dude, and I'm hoping he'll still be with us for as long as possible.

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198 Re: time is getting short on 7/9/2018, 10:42 am

knothead wrote:I rarely post anymore but felt compelled to add my two cents worth on Mr. Oats and his remarkable journey . . . . in fact, one of the principle reasons I even visit the forum anymore is to keep track of Mr. Oats as I have enjoyed his posts and his sometimes wise views. It saddens me greatly as I'm sure others have similar feelings.  I would be dishonest if I did not say that now it is my time in this barrel of life because I have been diagnosed with a high grade aggressive malignancy on my bladder . . . . it does not compare with Mr. Oats illness or the millions of others who face very consequential medical circumstances.  I am scheduled for surgery tomorrow morning at 7:00 AM.    

I'm so sorry to hear this... best wishes and let us know how you're doing.

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199 Re: time is getting short on 7/9/2018, 12:02 pm

knothead wrote:I would be dishonest if I did not say that now it is my time in this barrel of life because I have been diagnosed with a high grade aggressive malignancy on my bladder . . . . it does not compare with Mr. Oats illness or the millions of others who face very consequential medical circumstances.  I am scheduled for surgery tomorrow morning at 7:00 AM.    

Oh no, knot, I'm so sorry to hear -- that's a lousy hand to be dealt. I echo the others' best wishes and ask that you please keep us informed as and when you can. Will be thinking of you and hoping for the very best possible outcome of your surgery. Virtual hugs across the miles, LL

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200 Re: time is getting short on 7/9/2018, 2:46 pm

Knot...My prayers will be shared with you. My brother had a malignant tumor on his bladder years ago. He did fine. I hope the best for you.

Seaoat be careful bouncing on the bobcat.

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