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time is getting short

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201 Re: time is getting short on 7/9/2018, 4:03 pm

Knot,

I know you had relocated to east of Paducah KY, and I hope you are very comfortable with the level of your care. I think with some of the targeted therapy with Bladder cancer they have been very successful, but when you say an aggressive strain, my ears go up and like a broken record I encourage finding the best rated facility reasonably near you. Nashville has some incredible hospitals, and as you work your way through the data and information from your doctors, it is important to consider a second opinion at a specialty hospital.

We are all very fortunate to have such excellent science and medicine in America, but there is a huge gap between cutting edge hospitals and small regional hospitals. I can only assure you that the last ten years battling cancer have been the best ten years in my life. I have never been happier. Enjoy the kids and grandkids, and most important be thankful for a spouse who is there and supportive. None of this has to be the sky is falling, and I pray that you get good margins and prognosis......but do not EVER be complacent with cancer....research, talk to as many qualified doctors and take control of your medical journey.

I am having a great day and look forward to each day.......keep it positive and I am convinced you will enjoy years of quality precious life.

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202 Re: time is getting short on 7/9/2018, 6:00 pm

You tell him to get a second opinion when he's on his way into surgery at 7 a.m. tomorrow??????????? Good holy grief.

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203 Re: time is getting short on 7/9/2018, 7:45 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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204 Re: time is getting short on 7/9/2018, 9:15 pm

You tell him to get a second opinion when he's on his way into surgery at 7 a.m. tomorrow??????????? Good holy grief.


The first surgery usually is positive, it is what the cancer does or does not do after the surgery which requires the second opinion. Also, you have to be in an environment which is aggressive in monitoring the spread to the liver or bone and is preemptive in their methodology with scans and targeted therapies. I have a Golf buddy who has gone 15 years without spread of his bladder cancer, and a friend where it migrated to his liver. I am being blunt because I think it is my time and I do not want to stick around and see any more forum members gone because of a regional hospital not knowing what they are doing. Been there and done that.....

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205 Re: time is getting short on 7/10/2018, 1:01 am

2seaoat wrote:I am being blunt because I think it is my time and I do not want to stick around and see any more forum members gone because of a regional hospital not knowing what they are doing.  Been there and done that.....

OK, Sea, I get it.  I'll just reiterate that not everyone has a Northwestern available to them, for all kinds of reasons.  Your advice may be perfectly valid and correct, but in certain circumstances it will simply cause stress, and I know you don't want that, either.

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206 Re: time is getting short on 7/10/2018, 10:06 am

Health issues do cause stress and after ten years of having stupid comments made about how people have an opinion on how you beat cancer, I get that some of my comments may not be helpful in the short term, but in the long term recognizing that there is an array of cancer, and when it is aggressive, and you are in a regional hospital, travel and get second opinions. I went to Dr. Strausberg at Moffitt in Tampa, and it only took a month to get an appointment and I was getting a second opinion from a top 3 doc in Endocrine cancer doc, who knew Dr. Benson at Northwestern, and I was removed from my local regional hospital who dropped the ball repeatedly in my journey. Getting the best second opinion is only as expensive as getting in a car and driving and paying for a hotel room. The insurance pays the bills in both facilities.

Knox understands my concerns with local treatment, and from the days he was helping film a major movie as a young man to his years on the railroad, he lived his life with quiet intelligence as demonstrated on this forum....and he will investigate all options.

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207 Re: time is getting short on 7/10/2018, 12:05 pm

2seaoat wrote:The insurance pays the bills in both facilities.  

Knox understands my concerns with local treatment, and from the days he was helping film a major movie as a young man to his years on the railroad, he lived his life with quiet intelligence as demonstrated on this forum....and he will investigate all options.

YOUR insurance paid the bills in both facilities. Surely you are not blind to the fact that this is far from always the case for everyone. And you have indicated in more ways than one that you were capable of handling some uncovered medical expenses if it came to that -- again, most could not.

As for KNOT'S undisputed intelligence, surely you don't mean to insult others who haven't "investigated all options" in the same way you have or that you believe others should.

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208 Re: time is getting short on 7/10/2018, 12:07 pm

2seaoat wrote:Health issues do cause stress

Exactly.  No additional stressors are called for.

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209 Re: time is getting short on 7/10/2018, 2:52 pm

Medicare pays for it, and almost all supplemental policies pay for an out of area health care visit. My doctors at a regional hospital did not even know that you put an endocrine patient on sando shots and for three years I dealt with the limits of their skills at that hospital as my cancer spread unabated all the while they were thinking they were helping me......not. life is stressful. Stress is not bad if it is handled with constructive focusing on the issues at hand. Solutions exist in every situation, and second opinions are critical.

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210 Re: time is getting short on 7/10/2018, 3:13 pm

Just had the hospice nurse stop by and take pictures of my medicare card and my supplemental policy. We will see how much their visits are going to cost. At the end of the year it is amazing how much out of pocket and medical expenses a person has paid fighting cancer. I am thankful that great Americans came before who realized that old age needed to be met with a good health insurance system, and I have NEVER heard one person complain about medicare. I am now down to 204 pounds which is what I weighed my senior year in high school. The hospice nurse was right that I was not 214 pounds which I weighed just four weeks ago. It is interesting on how hospice tries to connect with each patient on the human level first, and then deal with the medical. I am making all the nurses laugh when they come over, and they told my wife they look forward to conversations with me......I can be a bit devilish.

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211 Re: time is getting short on 7/10/2018, 7:37 pm

First, thanks to everyone for their comments . . . . I really really appreciate it.
Secondly, I am in complete agreement with Mr. Oats regarding getting s second opinion. As an aside we still have our place around the Land Between the Lakes (LBL) but elected to move to Franklin, TN just a short distance from Nashville to be closer to son/GD.

I will spare all the details but the procedure went as planned with the lesion excavated as much as possible with instillation of Mitomycin C, an anti tumor chemotherapeutic agent which is held in the bladder for one hour (seemed like an eternity). No details yet but pathology will be complete in 2/3 days but we do know it is in the muscle wall (stage T2) and should be very curable (the good news) but has a high recurrence rate (the bad news) thus requiring follow up cystoscopic check ups every three months for the remainder of my life.  Like I said I have little to complain about considering Mr. Oats and the millions with far worse prognosis. I want this thread to remain on Mr. Oats and am now kinda wishing I hadn't spilled the beans on my own medical issues. joani, zman, pkr, LL, and Mr. Oats a big thanks!!

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212 Re: time is getting short on 7/10/2018, 7:54 pm

Cysto's every 3 months...small price for reassurance and peace of mind.



Last edited by Joanimaroni on 7/11/2018, 9:42 am; edited 1 time in total

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213 Re: time is getting short on 7/11/2018, 12:31 am

2seaoat wrote:Medicare pays for it, and almost all supplemental policies pay for an out of area health care visit. 

In case you weren't aware, sir, over 20 million Americans are on Medicare Advantage plans -- NOT traditional Medicare and supplements -- many of which Advantage plans do not cover visits out of network, or, depending on the plan, do so only at much higher co-pays/co-insurances, and even then may limit the geographical area except in emergencies.

I'm glad you received validation from knot as to his agreement on second opinions.  But there are second opinions, and then there are second opinions (not to mention treatment) from major hospitals such as Northwestern, which, as I've indicated before, may simply be out of reach for many people, for varying reasons.   Further, I should clarify that my remarks weren't necessarily made with knot in mind, but rather other, less fortunate people who doubtless also read this forum.



Last edited by RealLindaL on 7/11/2018, 12:45 am; edited 1 time in total

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214 Re: time is getting short on 7/11/2018, 12:43 am

Knot, thanks so much for your follow-up post.   Be assured you have as much right to complain as anyone (even though it appears to me you aren't really complaining at all, just explaining), so please don't feel for a minute that you shouldn't have shared your own story.  You're important to us and I, for one, am very grateful that you advised of your health situation.   Please continue to keep us in the loop, including on pathology results if you're willing.  You can always start a new thread if it bothers you to post on this one.

I do hope the every-three-months tests won't be too onerous a burden, but certainly it's no fun.  Sorry you have to deal with all this!

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215 Re: time is getting short on 7/11/2018, 11:38 am

Cancer is a bitch. However, that does not mean that you cannot live a full quality life despite the disease. I expect 15 years from now Knox will be posting and enjoying his family. I have had ten wonderful years with the disease, and even now I am going to play poker at six tonight and although the simple things I took for granted like walking and having energy are becoming difficult, I will migrate to a wheel chair when the time comes.

Stay vigilant and do NOT become complacent. You have to be your own health advocate. Second opinions and volumes of reading will follow, but the most important consideration is your state of mind. Keep it positive and enjoy your family.

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216 Re: time is getting short on 7/11/2018, 1:51 pm

" Ten wonderful years of cancer". The best years of his life. I can't even imagine how terrible your life must have been before cancer?

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217 Re: time is getting short on 7/11/2018, 2:12 pm

He was a greedy capitalist. Pond scum... the worst. Now he just chases people off of his property.

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219 Re: time is getting short on 7/12/2018, 12:27 pm

Pre cancer life was wonderful, but to know that wonderful life is going to end, brings an element of wisdom as to priorities. My priorities were not good pre cancer and spending time with grandchildren when I normally would have been on the golf course.

Huge two inch by two inch met on my spine which the cat scans had identified, but I never felt at the surface has surfaced. Very painful as now sitting in my chair and sitting in the car, where once I found comfort, now is very uncomfortable. I have lost close to forty pounds of body mass so my back has much more pronounced tumors as I now weigh probably less than I did as a senior in high school. However, there may be good news hidden in this mess. The PRRT is most effective against bone mets and the swelling and pain in my back now may be tissue necrosis as the cancer cells are being attacked. Yesterday was the two week mark when I am suppose to be feeling better, and in fact other than this surfacing of the tumor, I am feeling better.

We did not have enough for poker, so we played pinnocle and I won. I got a haircut and my barber was very quiet and not very talkative as it is obvious with the weight loss that the disease is coming to an end. I stopped to collect some mail from my former office, and did more walking yesterday than I have done in two months. I am just amazed what modern medicine can do as I should be dead, so yes simple things like yesterday are very fulfilling and fun.

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220 Re: time is getting short on 7/12/2018, 8:47 pm

Thanks for the update. Keep working on increasing your calories.

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221 Re: time is getting short on 7/13/2018, 12:11 pm

Joanimaroni wrote: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.

Thank you joani, I appreciate your support, fortunately badder cancer is very survivable so I am grateful.

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222 Re: time is getting short on 7/13/2018, 12:35 pm

RealLindaL wrote:Knot, thanks so much for your follow-up post.   Be assured you have as much right to complain as anyone (even though it appears to me you aren't really complaining at all, just explaining), so please don't feel for a minute that you shouldn't have shared your own story.  You're important to us and I, for one, am very grateful that you advised of your health situation.   Please continue to keep us in the loop, including on pathology results if you're willing.  You can always start a new thread if it bothers you to post on this one.

I do hope the every-three-months tests won't be too onerous a burden, but certainly it's no fun.  Sorry you have to deal with all this!

LL, I especially appreciate your comments . . . . thank you! You are kind, smart and very intuitive all of which combined make you a very positive force for our dwindling forum and I always read your well written posts with interest and admiration so thank you for being you!

As to my current situation, I am seriously miserable at the moment but recognize it is temporary and will pass. Following post op I had to go to the ER late in the evening because blood clots had formed in the urethra effectively stopping the flow of urine elimination. I can say without hesitation it was the worse pain I have ever experienced in my own life and I had more than my share of accidents, etc., it was so intense I was disabled. After 3 hours at the ER well over a liter of urine was drained with lots of blood clots (the culprit). I came home with a catheter and was able to sleep about 3 hours for the first time in days. The instilled drug used is what will kill the malignant cells but this is simply a necessary result. I go to my urologist today and hopefully it will be removed so I can resume a semblance of normalcy.

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223 Re: time is getting short on 7/13/2018, 12:45 pm

The battle will have high points and low points and my buddy who has now lived over 15 years with his bladder cancer was not a real fan of things being stuck into quite sensitive areas.....he had a sense of humor about it because he enjoyed all of us squirming as he gave details of how the doctors put large objects into small spaces. You want to see a male squirm......just talk about what you are experiencing.

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224 Re: time is getting short on 7/13/2018, 1:06 pm

2seaoat wrote:The battle will have high points and low points and my buddy who has now lived over 15 years with his bladder cancer was not a real fan of things being stuck into quite sensitive areas.....he had a sense of humor about it because he enjoyed all of us squirming as he gave details of how the doctors put large objects into small spaces.  You want to see a male squirm......just talk about what you are experiencing.

TRUER WORDS HAVE NEVER BEEN SPOKEN SO AMEN MR. OATS!!

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225 Re: time is getting short on 7/14/2018, 2:15 am

knothead wrote:
2seaoat wrote:You want to see a male squirm......just talk about what you are experiencing.

TRUER WORDS HAVE NEVER BEEN SPOKEN SO AMEN MR. OATS!!

LOL you two are a stitch and a half! But OUCH. Having been catherized just once in my life, I can attest it's NO FUN for women, either.

Knot, glad to see you're being attentive to yourself and that you're keeping your positive, this-too-shall-pass type outlook. I, too, hope your catheter was able to be removed, and that you have no more scary problems.

Thanks for your interesting and informative update, and thanks also for your kind comments about my posts.   Mutual admiration society here.   Smile

Keep writing, guys...we care.

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