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time is getting short

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1 time is getting short on 1/26/2018, 5:11 pm

Not good news on Thursday. Two newer tumors are growing unchecked on my liver. The tumors which have been treated with radiation over the last six years are stable, and the large one treated with chemo embolization in November actually got smaller, but my liver functions are not stable as my "billierubens" sp have risen to about eight from six years of being below five. This has caused the doctor to put a stop on treatment of the newer tumors. I was playing poker with a person who had a liver transplant and his levels went all the way to 30 before they found a liver and saved his life. He said for a month he could not leave his bed leading up to those levels. He is doing great now and enjoying life.

You begin to understand why Steve Jobs who had my cancer when given the opportunity from the University of Missouri jumped at the chance for a liver transplant which his oncologist across the board said would not solve the underlying spread of the cancer. He died two years later. However, based on my growing high hormone numbers, flushing, lost of weight and growth of the tumors on the liver, they finally gave me a time frame after years of asking when will this take me down. They always said it was variable. Once the liver starts to fail, they figure three to six months. As the liver is unable to get the poison out of your system your urine becomes quite dark as the body tries to filter the toxins through the kidneys. I am now going to look for a sauna around my home, but the closest one is like an hour away and I am going to have to assist the toxin removal by sweating some of the poison out. It will not add much time, but it will probably cut the liver pain and free up some of the load on my kidneys right now. I really feel bad for doctors and my PA. We have grown close over the last four years and I could tell in their words and body language they were very uncomfortable telling me the truth, but I appreciated the same as I can now expedite things which will adversely impact my wife if not addressed. It has been an amazing journey, and I have never been happier in my life as this dying thing has not been as bad as I thought when this battle began.

I would appreciate if anybody knows if there is a health club or hotel which has a sauna. I will return in Feb. and March if I am still able and I would like to take a sauna every other day, and need to get a membership. I spent an hour looking for one near my rural town, and have had no luck. When I was healthy and in my thirties everybody had saunas. No longer the case.

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2 Re: time is getting short on 1/26/2018, 5:51 pm

I'm really sorry. You've helped us all by being so open though this. I appreciate it... thank you.

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3 Re: time is getting short on 1/26/2018, 5:54 pm

Agh! Sorry for the bad report from the doctor. I'll be hoping that things will stabilize.

Gotta say, you are one tough dude and I greatly admire the way you handle this situation. Your attitude toward it is exemplary! I hope you'll find a good sauna nearby, that sounds like a good plan.

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4 Re: time is getting short on 1/26/2018, 6:45 pm

Sea, I think we've all been spoiled, thinking you'd really not be leaving us in a very long time, since you've always done so amazingly well with your treatments and rallies. But if the docs are now for the first time giving you a time window, I guess this is something we really can't ignore, as much as we'd like to. I know you're OK with it but of course we aren't. Our problem, not yours. Just concentrate --as you obviously are -- on finding the best ways to be comfortable and maybe even stretch the limits a bit as you always have.

I googled Navarre, FL sauna and a few things came up, but, if infrared would work for you, this place looks the most promising (they actually tout increased toxin release vs. steam), and it's right on Navarre Parkway. Per some of the web page copy they seem to have a medical connection, not simply beauty and relaxation stuff like so many others. I tried phoning them (a half hour before their 5 p.m. closing time) and got an answering machine, and didn't leave my number, but perhaps you'll want to try it yourself tomorrow or whenever, just to know whether there's a place for you if/when you return --- (850) 677-0497 --- or, even easier, there's an email "consultation" form available right on their sauna web page. It sounds promising and I hope won't prove a dead end (no pun intended):

http://navarrewellness.com/medical-spa/sunlighten-saunas/

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5 Re: time is getting short on 1/26/2018, 8:48 pm

Thanks for the lead. We have found a YMCA a few towns over which does have a sauna, but the problem is that NW Illinois has a full fledged flu epidemic with the hospitals filling up. My wife called a lab tech friend at a local hospital and they are overflowing. I played poker on Thursday, but I think I am going to stay away from people until the superbowl party, but still may get a sauna which are notoriously filthy and the perfect to spread the flu virus.

I have a month to get my numbers back down for them to treat the new tumors, but I am getting the sense each day that the liver is slipping. This flu was not that bad when we were in Florida, but I see now that in fact it was not good. I am going to stay in the house for the next week. My wife is washing her hands when reentering the house after being out and about. It would be ironic if the flu expedited the process as my great grandfather died in the 1918 flu epidemic and was only in his forties.

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6 Re: time is getting short on 1/27/2018, 2:31 am

So sorry to hear this. Try the sauna....and wear a mask.

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7 Re: time is getting short on 1/27/2018, 9:48 am

I recommend a snorkel, mask, and flippers... and talk to every person about Russian collusion. Er... obstruction? Uh... taxes? Well... just ramble wildly like you do here. Wink

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8 Re: time is getting short on 1/27/2018, 3:09 pm

2seaoat wrote:Thanks for the lead.  We have found a YMCA a few towns over which does have a sauna, but the problem is that NW Illinois has a full fledged flu epidemic with the hospitals filling up.  My wife called a lab tech friend at a local hospital and they are overflowing.  I played poker on Thursday, but I think I am going to stay away from people until the superbowl party, but still may get a sauna which are notoriously filthy and the perfect to spread the flu virus.

I have a month to get my numbers back down for them to treat the new tumors, but I am getting the sense each day that the liver is slipping.  This flu was not that bad when we were in Florida, but I see now that in fact it was not good.  I am going to stay in the house for the next week.  My wife is washing her hands when reentering the house after being out and about.  It would be ironic if the flu expedited the process as my great grandfather died in the 1918 flu epidemic and was only in his forties.

Build one or have it installed in your home. Google build a home sauna. You could be up and running in a few days.

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9 Re: time is getting short on 1/27/2018, 7:04 pm

Well it looks like end stage of liver failure is starting. I bled badly with my shots on Wed., and when they took blood for kidney functions on Thursday for the cat scan the bleeding was horrible and concern to the nurse. One of the signs of end stage liver failure is bleeding. I have been itching for about three months so that is not new, but for the first time last night I had to throw up and it lasted for three hours. I am exhausted but that is nothing new, but the right shoulder pain and light stools all indicate with the liver function tests indicate. I doubt at this point there is much I can do but ride it out. I am not hungry or thirsty, and the volume of urine coming out of me is miniscule. It is very dark colored all indicating end stage of liver failure. All the stats said I should have been dead four years ago, and for the first time I am certain that I am not going to bounce back, but heck when you have been given four extra years I remain grateful for what I have been given and find none of this challenges earth shattering. Modern medicine has done a great deal to make this process mostly comfortable.

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10 Re: time is getting short on 1/27/2018, 7:55 pm

Happy rivers comrade. Basketball

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11 Re: time is getting short on 1/27/2018, 11:13 pm

2seaoat wrote:Modern medicine has done a great deal to make this process mostly comfortable.

Well, I'm glad you see it that way  -- even though what you've just described doesn't sound particularly "comfortable" to me.  I just hope your way will continue to be reasonably tolerable (in your estimation) for as long as you're able and willing to stay.  

I know no one ever promised life would be fair, but dammit, this just isn't.



Last edited by RealLindaL on 1/28/2018, 2:23 am; edited 1 time in total (Reason for editing : typo)

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12 Re: time is getting short on 1/28/2018, 1:06 pm

You are a remarkable man, Seaoat. Hoping for better days.

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13 Re: time is getting short on 1/28/2018, 1:44 pm

Keep your chin up Seaoat. Here's to more days and less pain. sunny

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14 Re: time is getting short on 1/28/2018, 6:31 pm

First sauna was successful. Immediate relief to the liver pain. All the medical sites recommend three per week to relieve liver and kidneys of toxins. Two saunas of about fifteen minutes and a shower in between. I think it will be Sunday tuesday and friday routine. Will fight to the end giving my body every chance to function within normal range, but increasingly getting more tired. Nothing awful, but still a challenge. After reviewing the blood test, it is far worse than the doctors let on. Some liver tests were four hundred percent higher than three months ago. I think some of the experimental virus immunothearpy are too far off on this cancer for me to qualify for a trial at the rate I am weakening. The sauna gives me a little hope that my liver numbers can improve, but realistically the mortality factors are stacked right now.

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15 Re: time is getting short on 1/29/2018, 2:17 am

Good for you for fighting like a champ, Sea.   So glad the sauna relieved the liver pain and hope you can keep it up even though it has to be pure inconvenience.

Three cheers for you!        cheers    cheers    cheers

The future will just have to take care of itself, but no one can say you're not doing all you can for the sake of yourself and your loved ones.



Last edited by RealLindaL on 1/29/2018, 4:54 pm; edited 1 time in total

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16 Re: time is getting short on 1/29/2018, 4:14 pm

No inconvenience at all compared to what happened the other night when I was throwing up. I had my brain misfiring and the horizon moving all over the place. Liver failure will effect my cognitive abilities. It was a bit scary not able to get out of the chair without throwing up and when I closed my eyes everything was moving. It is clear that the next one may be worse, so any toxins I can get out of my system, the longer I have before that becomes my permanent state. We are going to a hotel in the quad cities tonight to play poker and enjoy a meal. I am feeling so much better from one sauna, and will take another when we return on Tuesday afternoon. I am also drinking a ton of water to flush my kidneys. I am beginning to think all that hard work with sweating involved has forestalled my liver failure, but the objective tests show a big jump in my numbers two months ago.

I always had hope when the Northwestern Docs could do surgery to fight the tumors, but with the decline of liver functions, they cannot perform any more procedures, and sadly we are at that point of waiting. My guess is three months because when I asked about six months the PA said I should talk to the doctor, but said she is sure I will make three months. There are trials with immunotherapy for endocrine cancer, but I am going to wait until my next blood tests at the end of February to investigate a trial, but I doubt with the decline I would be accepted. Nothing all that bad when I have known this is how it would end. I was very sick when Neko, ghostrider, retired Leo, Bob, T, and Z were alive, yet I have had six years of quality since the liver has been involved, and none of what I have been facing has been too painful, or too uncomfortable. When you know what is coming with certainty, you simply go with the flow.

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17 Re: time is getting short on 1/30/2018, 3:13 pm

We got comp hotel room and comp meals at Jumers in the Quad cities. It was a wonderful time. I begin to have a bit of regret that as much fun as my wife and I have been having in our retirement, it would have been nice to get ten years of this traveling and doing things together. Sometimes the best laid plans of mice and men. I have communicated to friends to retire early. Do not assume that the health you enjoy today will be there in your golden years.

The casinos are full of old and sick people. There are flashing lights, lots of people, and people getting excited about something. I used to give my mother a hard time because in her eighties she began to like to go to the casino and play slots. I never really understood all the older people who congregate to the same, but I think I am gaining wisdom with time. They are having excitement and fun......and getting their free gifts and meals. On a week day Jumers looked like a nursing home which had let their folks go to the casino for the day. The poker room was closed on a monday, which took some of my fun away, but I still won three hundred dollars and everything was comp. The hotel rooms are four star and so comfortable. We have decided to go back again before we return to Florida, If I am able to go south.

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18 Re: time is getting short on 1/30/2018, 6:09 pm

2seaoat wrote:I have communicated to friends to retire early.  Do not assume that the health you enjoy today will be there in your golden years.

The ultimate wisdom, and we're on the same page here.  I retired at 53 and never looked back, and have always encouraged anyone even thinking about it to just DO IT.  (Hear that, anyone here who's even thinking about it?  Smile )

Still, I suppose some wouldn't care for our quiet, modest lifestyle.  We're pretty much homebodies, virtually on vacation every day on this beautiful island, don't feel the need to travel, so we don't.  Each to their own, I always say.

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19 Re: time is getting short on 1/30/2018, 6:35 pm

Ya... I retired in 2009 at 47 when I saw what obamacaid was going to do to my dme business.

Luckily the huge corps were willing to buy it. The next year it would've just folded up to huge corps.

Obamacaid closed up most of the small business medical services... standard economic fascism.

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20 Re: time is getting short on 1/30/2018, 8:04 pm

We are going to look at some new routes to Florida where we can comp at hotels. We always get free rooms at Harrahs in Metropolis which is right on our way to Florida, but think we may go through Indiana to try some new places. My wife really enjoyed herself and since the sauna I have actually been doing pretty good. I will take one Wed, as I am too tired to go over today. I need to do it three times a week to reduce toxins, and will probably before my super bowl party on Sunday have one in the morning.

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21 Re: time is getting short on 1/30/2018, 10:27 pm

2seaoat wrote:We are going to look at some new routes to Florida where we can comp at hotels.  We always get free rooms at Harrahs in Metropolis which is right on our way to Florida, but think we may go through Indiana to try some new places.  My wife really enjoyed herself and since the sauna I have actually been doing pretty good.  I will take one Wed, as I am too tired to go over today.  I need to do it three times a week to reduce toxins, and will probably before my super bowl party on Sunday have one in the morning.


Good for you Seaoat....I got my liver studies down to double digits.

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22 Re: time is getting short on 1/30/2018, 10:55 pm

Sea, sounds like a plan -- and good for you and Joani both.

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23 Re: time is getting short on 1/31/2018, 12:15 am

My big day will be Feb 21 when I take the blood test for liver functions. They are not releasing my hormone levels which were off the charts, and I suspect they know how screwed I am. I will spend the next three days looking for immuno therapy for endocrine cancer. The problem is the body once eating the cancer tumors with the immune system has been eating patients vital organs.

I can see my white blood cells talking to each other......“I ate his liver with some fava beans and a nice chianti."

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24 Re: time is getting short on 1/31/2018, 12:45 am

2seaoat wrote:

I can see my white blood cells talking to each other......“I ate his liver with some fava beans and a nice chianti."



Did they win an Oscar too? Wink

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25 Re: time is getting short on 1/31/2018, 1:23 am

Telstar wrote:
2seaoat wrote:
I can see my white blood cells talking to each other......“I ate his liver with some fava beans and a nice chianti."

Did they win an Oscar too? Wink


OH, you guys!!     Laughing

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