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time is getting short

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276 Re: time is getting short on 8/17/2018, 4:20 pm

Aretha Franklin was always a large woman. She had muscled shoulders, and when her grandchildren posted a video of her today from March, I saw the wasting I am experiencing in my shoulders. I could not believe how frail she looked in March. Steve Jobs at his final Apple Corporate meeting looks exactly like I do now. Both suffered from Endocrine cancer, and with all their success and financial security, the disease could not be stopped. It is slow and steady, but there are specialist in regard to this cancer, and I cannot imagine that Franklin did not have the PRRT treatment in Europe, but I doubt she had time to get on a waiting list for the treatment at a research hospital, and I have heard that she had a fear of flying, and the European treatment would have required her flying four times to Europe. I hope they tell us more about her final illness.

I have been humbled by my blind luck of getting the treatment before I slid into a slow descent to hell. Yet, Steve Jobs and Aretha Franklin have unlimited resources, and they certainly may not have gotten the best treatment, and in Jobs case the liver transplant required incompetent complicit doctors.

I went to the dentist today as my rear two upper molars have crumbled, in part from radiation and cavities. When you are dying you do not figure to be alive long enough to deal with dental issues. The problem is that those two molars are connected to a large mandibular bone which will make extraction very difficult. The dentist had never seen such a large one. (that is exactly what my wife said) I will need to go to an oral surgeon. They have given me a temporary filling which he believes will last until I come back from Florida this Spring. This is tough planning things now because six months ago I was told I would be dead in September, but it is a good problem.

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277 Re: time is getting short on 8/19/2018, 9:21 am

They said on the news Aretha had pancreatic cancer.

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278 Re: time is getting short on 8/19/2018, 9:34 am

2seaoat wrote:I think she is hooked.  Her mother was a chain smoker who lived to 90.  When we would spend the night at her mother's house, we had to sleep on the floor to breathe.  My father in law had sealed the house with caulk and insulation, and they both chain smoked.  Her wedding dress was in her old bedroom and the nicotine and tar had yellowed her wedding dress in 20 years sitting in the closet with a plastic cover.  No she fully knows the dangers of smoking, but argues she smokes so few that she is not going to try to quit.

The dress wasn't yellowed by smoking. Improper storage causes clothes to turn yellow. Chemicals in the plastic. Clothes yellow in non smokers houses.

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279 Re: time is getting short on 8/19/2018, 12:12 pm

They said on the news Aretha had pancreatic cancer.


That would be incorrect. It is imprecise use of a medical term. It was reported that Steve Jobs died of pancreatic cancer. That would be wrong. Neuroendocrine cancer can have tumors on the pancreas, lungs, intestines, kidney, and liver. It is completely different than 90% of pancreatic cancer which is a very fast cancer. My first tumor was on my lung, but I do not have Lung cancer. It then moved to my liver, but I do not have Liver cancer. It then moved to my bones, but I do not have bone cancer. Seaoat, Franklin, and Jobs all had endocrine cancer. Endocrine cancer is a systemic cancer not associated to any specific organ, but its tumors appear on organs.

https://www.pancan.org/news/aretha-franklin-the-queen-of-soul-dies-of-pancreatic-cancer/

Pancreatic neuroendocrine tumors (pancreatic NETs or PNETs) account for about 6 percent of all pancreatic tumors. They may be benign or malignant and they tend to grow slower than exocrine tumors. They develop from the abnormal growth of endocrine (hormone-producing) cells in the pancreas called islet cells. This is why these tumors are sometimes referred to as “islet cell tumors.”

The dress wasn't yellowed by smoking. Improper storage causes clothes to turn yellow. Chemicals in the plastic. Clothes yellow in non smokers houses.

After her mother died, the nicotine tar had to be removed with solvents from the entire house. The house had been weatherproofed where there was no exchange of fresh air, and they smoked about two packs each a day. We literally slept on the floor when we would spend the night because we could not breathe at bed level. What you said may be true in other households, but that wedding dress was covered with nicotine tar.

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280 Re: time is getting short on 8/19/2018, 2:07 pm

2seaoat wrote:They said on the news Aretha had pancreatic cancer.


That would be incorrect. It is imprecise use of a medical term.  It was reported that Steve Jobs died of pancreatic cancer.  That would be wrong.  Neuroendocrine cancer can have tumors on the pancreas, lungs, intestines, kidney, and liver.  It is completely different than 90% of pancreatic cancer which is a very fast cancer.  My first tumor was on my lung, but I do not have Lung cancer.  It then moved to my liver, but I do not have Liver cancer.  It then moved to my bones, but I do not have bone cancer.  Seaoat, Franklin, and Jobs all had endocrine cancer.  Endocrine cancer is a systemic cancer not associated to any specific organ, but its tumors appear on organs.

https://www.pancan.org/news/aretha-franklin-the-queen-of-soul-dies-of-pancreatic-cancer/

Pancreatic neuroendocrine tumors (pancreatic NETs or PNETs) account for about 6 percent of all pancreatic tumors. They may be benign or malignant and they tend to grow slower than exocrine tumors. They develop from the abnormal growth of endocrine (hormone-producing) cells in the pancreas called islet cells. This is why these tumors are sometimes referred to as “islet cell tumors.”

The dress wasn't yellowed by smoking. Improper storage causes clothes to turn yellow. Chemicals in the plastic. Clothes yellow in non smokers houses.

After her mother died, the nicotine tar had to be removed with solvents from the entire house.  The house had been weatherproofed where there was no exchange of fresh air, and they smoked about two packs each a day.  We literally slept on the floor when we would spend the night because we could not breathe at bed level.  What you said may be true in other households, but that wedding dress was covered with nicotine tar.


How did it get through the plastic?

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281 Re: time is getting short on 8/19/2018, 2:10 pm

How would you know what Aretha had? My son in laws mother has pancreatic cancer-not endocrine.

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282 Re: time is getting short on 8/19/2018, 2:15 pm

How did it get through the plastic?

Most of the dress was fine except the top of the dress where the stains were very bad. Almost like somebody had gone outside on a hot day on a tar and chip road and stuck their finger in the hot tar and smeared it all around the collar and shoulders. My guess is that is was where the bag slipped over the hanger which was not air tight, or the zipper was not all the way up. It permeated everything and when cleaning all the surfaces, your bucket turned into tea water.

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283 Re: time is getting short on 8/19/2018, 2:21 pm

How would you know what Aretha had? My son in laws mother has pancreatic cancer-not endocrine.


I provided you the link, and there are ten more from where that came from which clearly said she was battling neuroendocrine cancer. If you know somebody who has had pancreatic cancer, did they last close to ten years or was their death much quicker? Franklin had been fighting the disease for close to ten years. She did NOT have the rapid decline of pancreatic cancer, but the slow descent into hell of neuroendocrine cancer. People use imprecise medical terms all the time, but after five years of trying to explain to people that Steve Jobs did not die of pancreatic cancer, but endocrine cancer.....I find that people really do not read or digest detail.

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284 Re: time is getting short on 8/21/2018, 9:38 am

Second PRRT treatment in the Morning. We will get up at 3am to drive to Chicago. There is a lot of construction on the interstates and there can be up to an hour difference in travel time so we need to get up early. I made the eight week cycle without my sando and actually feel remarkably well going into this second treatment. I am not looking for the nausea and I am hopeful to be strong enough to get together with a friend from fourth grade on Sunday where I will still be hot and must sit apart from others, and I will enjoy my youngest granddaughter's birthday as I have promised to embarrass her in front of her first grade boyfriend. I think young girls get into boys too early. We kept our daughter busy with sporting activity and all that energy moderated her boy crazy period......but first grade boyfriends.....pretty silly, but my son's wife transferred to my son's school in fourth grade, and at recess she asked the girls who my son was.......I coached her in coed basketball where she was on the same team as my son, and she scored a basket for the other team......she never came back to the team. I watched her be a groupie on my son's band and when they were sophomores we caught her giving him a big hug after a concert and then going to her girlfriends and high five all of them because of the hug. By Junior year she was literally living in our house and I told my son that he had to keep his bedroom door open when she visited, so what does the son do.....move to the basement as he argued that it would be easier when his band practiced......no those early attractions of young people are cute, but sometimes they are very strong. I still give my DIL mild ribbing about running up the score against her own team, and tell my grandson not to seek advice from his mother which basket to shoot at. What is funny my brother in eighth grade stole the ball from the opponent and did the same damn thing.

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285 Re: time is getting short on 8/21/2018, 3:58 pm

Not sure I followed that whole story but want to wish you well tomorrow. PRRT seems like such a lifesaver that I'm glad beyond words you're getting a second treatment, and with such a positive attitude you'll surely do well. GO, SEA!!

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286 Re: time is getting short on 8/22/2018, 11:17 am

My sentiments too.

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287 Re: time is getting short on 8/23/2018, 9:50 am

Second treatment done. Very weak and tired.

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288 Re: time is getting short on 8/23/2018, 10:25 am

I hope you'll perk up in a couple of days. Rest easy.

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289 Re: time is getting short on 8/23/2018, 9:55 pm

Low grade fever and extensive aches which make it difficult to walk. My wife is at Bunko tonight and hopefully I can cool down by the time she gets here. I may have to drive to Chicago tonight or early morning. I am drinking a lot of water as I am sleeping about half the day. At anytime I can hit the wall with the radiation and its impact on my body. I have been on a roller coaster for ten years now, and hope the fever breaks.

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290 Re: time is getting short on 8/23/2018, 10:09 pm

Yes... there are ways to force the fever down if it gets over 102 or so... tepid bath... etc. But often letting the body run its course is the best medicine. It's a terrible feeling. Maybe a pain pill or ibuprofen before sleeping.

Hope tomorrow is better.

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291 Re: time is getting short on 8/24/2018, 1:32 am

PkrBum wrote:Hope tomorrow is better.

My hope as well, Sea -- hang in there but get help if you need it. Glad you're drinking water -- good for you.

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292 Re: time is getting short on 8/24/2018, 12:44 pm

I hate having a fever....Tylenol and 2 hours later take ibuprofen. You get medication every 2 hours.

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293 Re: time is getting short on 8/24/2018, 8:14 pm

A tough day. low fever and general weakness. This has become quite a struggle.

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294 Re: time is getting short on 8/24/2018, 9:31 pm

2seaoat wrote:A tough day.  low fever and general weakness.  This has become quite a struggle.

So sorry. Heck, even "regular" radiation treatments (such as I had following breast cancer surgery) create fatigue - so it's no wonder this powerful treatment really knocks you for a loop big time. I'm sure we have no idea. Just glad you're still checking in and fighting the good fight. Please keep sharing if you're able and willing.

And I'm looking forward to the posts a little while hence when you tell us how much better you're feeling and that you're back to putting on a few more pounds. May it be soon, for your and Mrs. Sea's sake!! Meanwhile, I do still feel confident that if anyone can get through these first tough days, it's our Seaoat.

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295 Re: time is getting short on 8/24/2018, 10:37 pm

I have been a bit naive in my optimism with the PRRT treatment. My cancer is very advanced, and even if this PRRT buys me some more time, I did not expect this downturn. I thought it would be a piece of cake with each treatment and then magically I live for three more years, without understanding the degradation of my body. My margins are getting tighter and tighter, and every blood draw now takes two or three attempts digging around in my arm as this radiation is taking a toll on my veins. I totally get McCain saying enough. I am very tired but excited that I am still breathing and will get to enjoy my youngest granddaughter's birthday sunday.

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296 Re: time is getting short on 8/25/2018, 12:50 am

Well, if you were THAT optimistic (thinking three years) you certainly didn't say so here, I don't think.   Seems to me you've been cautioning us all along that your numbers are off the charts and the liver in significant trouble and that PRRT may buy you a little time only....  And you've given us plenty of specific info relative to your deterioration, and relative to how this treatment really knocks a person out, plus you experienced that first hand last time -- so it's not like you've been blind to it or anything.  

I know, I know. you said "a bit" naive, but I don't even see that, really, at least not in most of your posts.   OK, maybe you did seem a little less concerned than I thought you might be when you were prepping to go to Chicago for this week's treatment, given the terrible weakness, nausea etc. you suffered with the first treatment -- but what's wrong with taking a positive attitude?  Far better than going into it with dread, seems to me.

You may want to go back and read through the first page of this "time is getting short" thread, a full seven months back.   I think you've done remarkably well, all things considered.

Awful that they're having to dig around for veins, and I empathize.  I've had that problem for years myself, even without your very serious illness.  If I forget to heavily hydrate prior to a regular blood draw, there's hell to pay.   And while I was hospitalized this past May, they went through a full four IV placements over two days before they finally got one to stay put without leaking or whatever.  No fun, I know.  

McCain has a tumor type that almost no one beats, even those far younger than himself.   Not saying I don't understand how you can envision giving up, but sure hope you don't, and don't really see that happening -- not when you're still excited to be able to enjoy a grandchild's birthday.

One day at a time, yes?  Or is that a silly, useless platitude to place before you at this juncture?

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297 Re: time is getting short on 8/25/2018, 5:50 am

I am not giving up, but I would be lying if I told you I am strong and recovering. The three year date is the result of almost ten years that the EU had this treatment. That is the average of extended survival, but nobody at Northwestern has had my hormone levels, so my realization that in my fantasy world of feeling good for three years is tempered by a body which has suffered over and over again. Nobody said life was going to be easy. It is a lot easier when there is an absence of pain......but in the end I am on a roller coaster ride, and I will make the best of it.

I almost did not get married because in 1976 it required a blood test. I put it off because I did not like blood withdrawal as I had very high blood pressure and after a draw I would get light headed. With improved blood pressure medication this improved to the point it does not bother me, but three or four stick every lab and scan is now making me angry. I was told to really hydrate the day before a blood draw to improve the experience. Both my arms are black and blue with the repeated missed sticks.

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298 Re: time is getting short on 8/25/2018, 12:34 pm

I am not giving up, but I would be lying if I told you I am strong and recovering.  

And you haven't told us that.  You did indicate some modest improvement some time after the first treatment, but certainly not right away.

The three year date is the result of almost ten years that the EU had this treatment.  That is the average of extended survival, but nobody at Northwestern has had my hormone levels

OK that's an average in the EU, and who knows how many had hormone levels like yours over there?  And how many had your admirable can-do attitude??  All I'm saying is, who knows?  

so my realization that in my fantasy world of feeling good for three years is tempered by a body which has suffered over and over again.

You have succeeded by having a good, positive outlook that many, many others could never achieve.  It's good to be realistic, for planning purposes if nothing else, but seems to me that "fantasy world" of yours -- including hopping on heavy machinery when we all though you were nuts -- has been amazing medicine for you over time.

Nobody said life was going to be easy.

No promises, for sure.

It is a lot easier when there is an absence of pain

And speaking of pain, how are you doing on that score these days?  You haven't said much lately that I recall -- at least not since you spoke of no longer being comfortable sitting.

but in the end I am on a roller coaster ride, and I will make the best of it.

As you always have, seems to me, and you've served as a shining -- if largely unobtainable by most of us -- example of how to live with life-threatening illness.

I almost did not get married because in 1976 it required a blood test.


Is that not still required? Hmmm...I remember having one at my first marriage, but can't recall as to the second, in 1983.

I was told to really hydrate the day before a blood draw to improve the experience.


The lab techs at Gulf Breeze Hospital told me to just drink a couple of large glasses of water an hour or two before the draw.   I'll admit it seems to work pretty well -- when I remember to do it.

Both my arms are black and blue with the repeated missed sticks.


Ouch.  Can relate.  I always tell them now that I have jumpy veins and suggest a butterfly needle when possible, but still sometimes have two or three misses in one visit, especially when I forget my water right beforehand. Just sorry you've having to suffer this additional pain and frustration/anger right now, when you absolutely don't need it!

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299 Re: time is getting short on 8/25/2018, 12:50 pm

It is a learning curve and I am not feeling well today. I thought is was on day five last time where I began to have the gut pain reduced. This time it is almost as bad as the bottom in June. My concern is that my liver has been over radiated. Just looking for a little pain free space.

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300 Re: time is getting short on 8/25/2018, 1:05 pm

So you're really hurting.  Damn.   Maybe day five will be a turning point this time, too.  Isn't that tomorrow?  Sunday sounds like a good day for a turnaround (and a birthday, yes?).   Hang on.  Does it help you to keep in mind that the radiation is doing good things, even if it makes your liver hurt for a while?  Obviously I have no clue; just wishing we could fix it.

BBL,
Linda L.

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