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time is getting short

+8
EmeraldGhost
Vikingwoman
knothead
Telstar
Floridatexan
Joanimaroni
zsomething
PkrBum
12 posters

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76time is getting short - Page 4 Empty Re: time is getting short 5/1/2018, 8:52 pm

2seaoat



decline and weakness make me think if I do not get into the trial by mid May, I will be too weak by mid June. I will give it one week before applying pressure, but I am afraid I needed this a year ago. I am not sure I will survive the procedure. Oh well, it has been a horrible day of pain and 9 bathroom visits....this chit is getting real. I had to get assistance to carry a piece of plexiglass two feet by three feet because I was too weak to hold it with one hand. I am losing patience. I am losing a bit of my positive attitude about the decline.....it has become 24/7 misery.

77time is getting short - Page 4 Empty Re: time is getting short 5/1/2018, 10:43 pm

Vikingwoman




I wish you'd quit saying you've never been happier, Oatie. No one's happy when they're dying unless they're currently in a concentration camp. You must be trying to use reverse psychology on yourself. Not trying to depress you but surely you've had happier times than this? Didn't you miss me now? LOL!

78time is getting short - Page 4 Empty Re: time is getting short 5/2/2018, 1:15 am

RealLindaL



APPLY PRESSURE NOW.

79time is getting short - Page 4 Empty Re: time is getting short 5/2/2018, 1:24 am

Joanimaroni

Joanimaroni

2seaoat wrote:decline and weakness make me think if I do not get into the trial by mid May, I will be too weak by mid June.   I will give it one week before applying pressure, but I am afraid I needed this a year ago.  I am not sure I will survive the procedure.  Oh well, it has been a horrible day of pain and 9 bathroom visits....this chit is getting real.  I had to get assistance to carry a piece of plexiglass two feet by three feet because I was too weak to hold it with one hand.  I am losing patience.  I am losing a bit of my positive attitude about the decline.....it has become 24/7 misery.


Continue your plans, just don't over do it.

80time is getting short - Page 4 Empty Re: time is getting short 5/2/2018, 1:25 am

Joanimaroni

Joanimaroni

Welcome back, Viking!

81time is getting short - Page 4 Empty Re: time is getting short 5/2/2018, 2:54 am

RealLindaL



Joanimaroni wrote:Continue your plans, just don't over do it.

Tell me if I'm wrong, but, with all due respect, I doubt Sea has much chance of "overdoing it" on a day such as he just described.

I will just add FWIW that, since, as Viking points out, he's been super cheery with us, Sea may've also fooled his docs to some extent re the extent of his deterioration.  I say don't screw around, Sea, let them know immediately that their only chance to save your life is RIGHT NOW.  Waiting? Not seemingly a viable option.

This just sucks all to hell.

82time is getting short - Page 4 Empty Re: time is getting short 5/2/2018, 12:57 pm

2seaoat



I wish you'd quit saying you've never been happier, Oatie. No one's happy when they're dying unless they're currently in a concentration camp. You must be trying to use reverse psychology on yourself. Not trying to depress you but surely you've had happier times than this? Didn't you miss me now? LOL!


I have never been happier. When you are dying you appreciate everything ten fold. Family, friends, community, and work. No reverse psychology just a fact that when you were supposed to die four years ago, and have been given world class medical care, you want to just celebrate every day and enjoy every minute. In regard to having other happy times, I can say having you call me an idiot ranks right up there with those times that put a smile on my face, or having Bob have a melt down about his almond joy bros. We all have only so many days to live. We live our lives in ignorance when our lives will end, but honestly without the pain, it has been joyous, and with the pain, something I just need to handle as long as I can. Would I like to be 21 again and spend a week with my beautiful wife enjoying all the joys of youth sure, but acquiring wisdom and enjoying grandchildren.....priceless.

83time is getting short - Page 4 Empty Re: time is getting short 5/2/2018, 1:06 pm

2seaoat



I say don't screw around, Sea, let them know immediately that their only chance to save your life is RIGHT NOW. Waiting? Not seemingly a viable option.


I have been given four extra years of life by listening to the doctors. Steve Jobs did not listen and insisted on getting a liver transplant, and was dead two years later. I will communicate my weakness on next wed when the PA is in the office, and she will give me an update on what the Nuclear medicine people are saying. I believe that they still are waiting for insurance clearance, so sadly sometimes the system just does not move as fast as folks would like, but my weakness is troubling. My wife has said I have not looked better in 20 years as my once muscular frame has become just like jobs this slender metrosexual hipster type of body type......I actually look good, but the reality is I am a shrinking person.

84time is getting short - Page 4 Empty Re: time is getting short 5/2/2018, 3:57 pm

2seaoat



I just got this message from Northwestern:

Hello,

I received word today that PRRT was approved for you. They nuclear medicine department will be reaching out to you to work on a schedule.


Now hopefully I will be strong enough to survive the procedure. Good feedback from patients who have done it. They all talked about the weakness after each treatment. See why I remain happy and satisfied with life......it is having a positive and hopeful attitude which is hard when you hurt and are melting away.
cheers cheers cheers

85time is getting short - Page 4 Empty Re: time is getting short 5/2/2018, 5:17 pm

RealLindaL



2seaoat wrote:I just got this message from Northwestern:

Hello,

I received word today that PRRT was approved for you. They nuclear medicine department will be reaching out to you to work on a schedule.


Now hopefully I will be strong enough to survive the procedure.  Good feedback from patients who have done it.   They all talked about the weakness after each treatment.   See why I remain happy and satisfied with life......it is having a positive and hopeful attitude which is hard when you hurt and are melting away.
cheers cheers cheers

CONGRATS AND WOO HOO!!!!!!!!!  

Now let's just hope this doesn't get bogged down in medical bureaucracy.

86time is getting short - Page 4 Empty Re: time is getting short 5/2/2018, 9:55 pm

knothead

knothead

RealLindaL wrote:
2seaoat wrote:I just got this message from Northwestern:

Hello,

I received word today that PRRT was approved for you. They nuclear medicine department will be reaching out to you to work on a schedule.


Now hopefully I will be strong enough to survive the procedure.  Good feedback from patients who have done it.   They all talked about the weakness after each treatment.   See why I remain happy and satisfied with life......it is having a positive and hopeful attitude which is hard when you hurt and are melting away.
cheers cheers cheers

CONGRATS AND WOO HOO!!!!!!!!!  

Now let's just hope this doesn't get bogged down in medical bureaucracy.


OUTSTANDING!!!!

87time is getting short - Page 4 Empty Re: time is getting short 5/3/2018, 2:05 am

Vikingwoman



Joanimaroni wrote:Welcome back, Viking!

Thanks Joani! I just absolutely forget about this forum as I guess the addiction is gone.

88time is getting short - Page 4 Empty Re: time is getting short 5/3/2018, 1:33 pm

2seaoat



My sando shots have been postponed for May 16th. For the first time in 6.5 years I will not be getting my shots on time. This has me concerned, but they need to do a pet scan on May 23rd, and then hopefully the infusion sometime shortly thereafter........if not, I will have to take my sando shots on the 23rd after the scan, and then wait 30 days to get the infusion. I am still uncertain about whether I will be getting my sando shots during the three intervals of eight week infusions. I hope that gets explained shortly.

89time is getting short - Page 4 Empty Re: time is getting short 5/3/2018, 9:25 pm

Joanimaroni

Joanimaroni

2seaoat wrote:My sando shots have been postponed for May 16th.  For the first time in 6.5 years I will not be getting my shots on time.  This has me concerned, but they need to do a pet scan on May 23rd, and then hopefully the infusion sometime shortly thereafter........if not, I will have to take my sando shots on the 23rd after the scan, and then wait 30 days to get the infusion.  I am still uncertain about whether I will be getting my sando shots during the three intervals of eight week infusions.  I hope that gets explained shortly.


Are they delayed because of the PET scan?

90time is getting short - Page 4 Empty Re: time is getting short 5/4/2018, 7:09 pm

2seaoat



The PRRT uses isotopes which conflict with the Sando shots and interfere after the infusion with those isotopes attaching to the cancer cells. So normally people with Endocrine Cancer get a octreotide scan which lights up the endocrine cancer clusters. However, that scan also interferes with the isotopes. So a standard pet scan is used to identify as many of the cancer tumors throughout my body.......I am not a fan of pet scans with Endocrine Cancer because they do not reveal as much as the Octreotide scan, but they need a baseline.

I met my wife in 1973. I lived in Mexico for six months in 1975 and was separated from her as she was teaching, but the current three weeks is the longest period I have not been with her. You simply do not realize how much a spouse enhances your life until they are not there for awhile. She will be back a week from Saturday, and hope she enjoys mother's day with the kids and grandkids. I await with the understanding that in my decline, the stress on her is very difficult. Hopefully, I will survive the PRRT and the liver holds on, and the bone mets get knocked out and my liver functions improve......so many outcomes......and nobody knows how this play ends.

91time is getting short - Page 4 Empty Re: time is getting short 5/4/2018, 8:13 pm

PkrBum

PkrBum

I'm hoping for the best. Good luck buddy.

92time is getting short - Page 4 Empty Re: time is getting short 5/5/2018, 2:10 am

RealLindaL



What Pkr said, Sea. We're all pulling for you.

Hope your dear Mrs. Sea reads your posts showing how much you love and need her. Of course, telling her in person is even better - soon. Smile

93time is getting short - Page 4 Empty Re: time is getting short 5/5/2018, 6:33 pm

2seaoat



I still have not been informed on the sando shot reschedule, and when the nuclear folks want to do the infusion. My wife will be back by the 23rd. The grandkids usually visit us Memorial Day weekend as we explore the islands and go hunting for clam shells, but this treatment will have me away from people for about four days.......so I hope I can enjoy memorial day weekend with the kids.

The strange thing is I had vivid dreams a week ago about volcano eruptions. It was about three nights where I had visions of eruptions. Very strange. I have not had that kind of vivid imagery in my dreams in a long time. It is ironic that this week the folks in Hawaii are in fact dealing with volcano eruptions. I visited Hawaii when I was in fifth grade and we missed an eruption by a couple months, but I will never forget those flows which were still warm and how massive they were. I was going to post about those vivid dreams, but I have already gotten goofy enough with this illness and did not. I hope my dreams this week are about winning the lottery......but I guess you have to buy a ticket.

94time is getting short - Page 4 Empty Re: time is getting short 5/17/2018, 7:46 pm

2seaoat



Sadly it appears my Kidneys and liver are definitely failing. I can only hope that after the labs and pet scan I can still qualify for the PRRT, but honestly my urine looks like honey now with little or no volume. I just wish they got me in for the treatment three months ago.....they had fda approval, but my guess is that sicker patients had higher priority. The stats are not good on high hormone levels and failing organs. We will see, but my wife is heading home as we speak because of the turn in my health, I am very weak, and yes DREAMS, never been happier as I have framed the entrance to the tent, and my wife ordered this cool inflating couch which converts into a queen bed. I will show the finished tent and entrance by Sunday......if I am still here.

















95time is getting short - Page 4 Empty Re: time is getting short 5/18/2018, 8:17 pm

EmeraldGhost

EmeraldGhost

"Do not go gentle into that good night, .... "

I've little doubt you know the rest 'Oatie'

96time is getting short - Page 4 Empty Re: time is getting short 5/22/2018, 12:49 am

RealLindaL



Just discharged from hospital today after a week of serious problems and surgery of my own, now some complications...things can happen very quickly, so everyone be attuned to life as Sea has taught us.
One of the first things I did when getting back on the computer tonight was check here...was hoping for better news. Thinking of you tonight, Sea, with sincerest wishes for the very best possible outcome.

97time is getting short - Page 4 Empty Re: time is getting short 5/22/2018, 7:58 am

PkrBum

PkrBum

I'm sorry you're having a tough time too. This has been a bad spring for health.

98time is getting short - Page 4 Empty Re: time is getting short 5/22/2018, 8:53 am

zsomething



RealLindaL wrote:Just discharged from hospital today after a week of serious problems and surgery of my own, now some complications...things can happen very quickly, so everyone be attuned to life as Sea has taught us.
One of the first things I did when getting back on the computer tonight was check here...was hoping for better news.  Thinking of you tonight, Sea, with sincerest wishes for the very best possible outcome.

Yikes! Sorry you hit a rough patch, and hope the complications get ironed out as quickly and painlessly as possible. There's not much less fun than dealing with doctors.

And I'm hoping Seaoat has an easier week as well. He's tough, but I hate it that he has to be.

99time is getting short - Page 4 Empty Re: time is getting short 5/22/2018, 1:24 pm

Joanimaroni

Joanimaroni

Linda, I am so sorry you have been in the hospital for surgery and now having complications. Hoping the best for you. Let me know if I can help in any way.

Seaoat.... only good thoughts for you.

100time is getting short - Page 4 Empty Re: time is getting short 5/22/2018, 5:26 pm

RealLindaL



Thanks so much Pkr, zsomething and Joani for your very kind comments. Am in good hands and following orders so we'll see how it goes. Very hard on my poor husband, too. Hoping for better days ahead. Agree it has not been a good year thus far, health-wise, for many including myself. Beginning to think we are all severely stressed by the political goings-on, constant crises. Who knows?

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