This is a forum based out of Pensacola Florida.


You are not connected. Please login or register

time is getting short

Go to page : Previous  1, 2, 3, 4

Go down  Message [Page 4 of 4]

76 Re: time is getting short on 5/1/2018, 8:52 pm

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.

View user profile

77 Re: time is getting short on 5/1/2018, 10:43 pm


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!

View user profile

78 Re: time is getting short on 5/2/2018, 1:15 am

APPLY PRESSURE NOW.

View user profile

79 Re: time is getting short on 5/2/2018, 1:24 am

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.

View user profile

80 Re: time is getting short on 5/2/2018, 1:25 am

Welcome back, Viking!

View user profile

81 Re: time is getting short on 5/2/2018, 2:54 am

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.

View user profile

82 Re: time is getting short on 5/2/2018, 12:57 pm

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.

View user profile

83 Re: time is getting short on 5/2/2018, 1:06 pm

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.

View user profile

84 Re: time is getting short on 5/2/2018, 3:57 pm

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

View user profile

85 Re: time is getting short on 5/2/2018, 5:17 pm

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.

View user profile

86 Re: time is getting short on 5/2/2018, 9:55 pm

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!!!!

View user profile

87 Re: time is getting short on 5/3/2018, 2:05 am

Joanimaroni wrote:Welcome back, Viking!

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

View user profile

88 Re: time is getting short on 5/3/2018, 1:33 pm

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.

View user profile

89 Re: time is getting short on 5/3/2018, 9:25 pm

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?

View user profile

90 Re: time is getting short on 5/4/2018, 7:09 pm

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.

View user profile

91 Re: time is getting short on 5/4/2018, 8:13 pm

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

View user profile

92 Re: time is getting short on 5/5/2018, 2:10 am

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

View user profile

93 Re: time is getting short on 5/5/2018, 6:33 pm

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.

View user profile

94 Re: time is getting short on 5/17/2018, 7:46 pm

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.

















View user profile

95 Re: time is getting short on 5/18/2018, 8:17 pm

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

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

View user profile

Sponsored content


Back to top  Message [Page 4 of 4]

Go to page : Previous  1, 2, 3, 4

Permissions in this forum:
You cannot reply to topics in this forum