Author Topic: Share your cancer journey - and any other personal medical advice  (Read 126632 times)

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Offline Sanguine

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@Sanguine

I want to go into screaming fits every time I read or hear about someone young getting cancer. In fact,that is one of the prime reasons I can never accept that there is any such creature as a "kind and loving God".

I am glad you were able to survive,and sorry to hear you had to go through it.

@sneakypete oddly, I'm not sorry to have had to go through it.  You want to find happiness and meaning in life?  Reinforce your relationship with The Great Unknown?  Understand very clearly what is important and what isn't?  Find out what you're made of?  This is one way to do it.

Offline Sanguine

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Wow! I never knew that.  Glad you beat it!

Thanks, and me too!

Offline Gefn

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@Sanguine I’m so glad you beat this
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Offline Sanguine

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@Sanguine I’m so glad you beat this

Thanks, Freya.  I'm lucky in many ways.

Offline sneakypete

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@sneakypete oddly, I'm not sorry to have had to go through it.  You want to find happiness and meaning in life?  Reinforce your relationship with The Great Unknown?  Understand very clearly what is important and what isn't?  Find out what you're made of?  This is one way to do it.

@Sanguine

No question about that,but there are less painful ways to go about it.

I'm just glad you are here to write about it.
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Offline Sanguine

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@Sanguine

No question about that,but there are less painful ways to go about it.

I'm just glad you are here to write about it.

@sneakypete, some of us have to be hit over the head with a 2x4 before we pay attention.  I'm not sure I'm one of those people, but my attention was definitely gotten.

Offline To-Whose-Benefit?

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Get hit with it, and it will seem like more than a 2 x 4.
My 'Viking Hunter' High Adventure Alternate History Series is FREE, ALL 3 volumes, at most ebook retailers including Ibooks, Barnes and Noble, Kobo, and more.

In Vol 2 the weapons come out in a winner take all war on two fronts.

Vol 3 opens with the rigged murder trial of the villain in a Viking Court under Viking law to set the stage for the hero's own murder trial.

http://wulfanson.blogspot.com

Offline To-Whose-Benefit?

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My Lymph Nodes are a twisted mess. When I had a Biopsy done this Feb for Prostate Cancer it was done topically (shaved slices of skin off the outside of the body) in the armpit and came back Positive.

Now a Similar condition with my Lymph Nodes has dogged me for 30 years, always with NO real diagnosis But the condition reverses itself and does Not become actually Cancerous.

THIS time, an Oncologist diagnosed me as having Stage 4 Castration Resistant Metastatic Prostate Cancer.

I remained awake through my last Biopsy. My 2 Doctors doing the biopsy Asked me if I I had Ever Had Cancer Before!

I said NO!

From what I can gather I have some black/blackish material between my Lymph Nodes and the surrounding tissue.

So far, my body has Stopped 2 global chemotherapeautic agents dead in their tracks: Zytiga and Oxytaxel. My Next chemo will be Bevnan (Cabrizataxel).

My Question is, has anyone Else run into these changes in Their body? Has anyone else had a Positive Identification of the material (blackish/brown) between Their Lymphatic Cells/Organs? Has it or has it Not been Med Lab Identified as Cancerous? 

If Not, has anyone Had this odd material and it's Condition actually Med Lab Identified?

It's more than an Academic question for me because my, uh, Team of Medical All Stars could Use a Direction to Look into, as I have run out of time.

So, Thanks very much to anyone with answers or guesses, they beat all hell out of just watching my own personal clock run even Farther out of bounds.


« Last Edit: May 13, 2019, 09:03:32 am by To-Whose-Benefit? »
My 'Viking Hunter' High Adventure Alternate History Series is FREE, ALL 3 volumes, at most ebook retailers including Ibooks, Barnes and Noble, Kobo, and more.

In Vol 2 the weapons come out in a winner take all war on two fronts.

Vol 3 opens with the rigged murder trial of the villain in a Viking Court under Viking law to set the stage for the hero's own murder trial.

http://wulfanson.blogspot.com

Offline sneakypete

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Quote
My Lymph Nodes are a twisted mess. 

Now a Similar condition with my Lymph Nodes has dogged me for 30 years, always with NO real diagnosis But the condition reverses itself and does Not become actually Cancerous.

@To-Whose-Benefit?

This seems to be pretty common with lymphoma. I have it in the groin,stomach,and chest. Have had it since at least the early 1990's,when I suddenly went from 165 lbs or so,to around 230 lbs,and then a few years later bumped up to around 288 lbs.  The VA docs were the only ones I could afford to go to,and they kept telling me to quit drinking,eat a healthy diet,and get more exercise. It was,of course,my fault due to poor habits. Nothing to see here,folks.

This,despite me already being diagnosed and rated BY THE VA as an Agent Orange veteran,and lymphoma being the prime killer.

Finally,a few months ago my lungs filled up with water to the point I was having to have 2 quarts of fluid drained from them every 5 or 6 days to avoid drowning on dry land,and while in the CIVILIAN hospital being diagnosed with an irregular heartbeat (24 beats per minute) that lead first to a stent being put in,and a couple of weeks later having a pacemaker put in. It was while I was in the hospital after the stent surgery and on a monitor that the heart surgeon noticed my procedures every few days to have my lung drained,and figured out I have lymphoma. Being a heart surgeon he wasn't qualified to make this diagnosis,but what he did was come to me and tell me he had a female doctor that was going to come and see me the next day,and to make sure to NOT leave the hospital until after she talked with me. Evidentially he shared some records with her because when she showed up at 7 AM the next morning she was ready to hit the ground running. She told me what I had and what she thought I needed to do about it,and had already made me an appointment to her clinic a few days later.

How this relates to you is the fact that it seems common for lymph gland cancer to live in your body and cause you problems for years while still remaining benign.

BUT......,when it turns malignant it means business because it is already well-rooted and has a head start with most people. I am only half-way though my initial treatment program,but so far I seem to have been one of the VERY lucky ones that caught it in time for the meds to really work well. IF everything continues to go well,it will be early August before my treatment is done. If it doesn't continue to go well,who knows how long it will continue? The surgeon ruled out a transplant right off the bat due to my age.

I am not a doctor and don't play one on teebee,but I think you need to contact a cancer clinic that has multiple doctors and offices. In other words,one big enough and professional enough to have a whole damn herd of cancer surgeons that can put their heads together at clinic meetings and discuss successful and unsuccessful treatments with each other.

This stuff is just too "big" at the stage you are to trust to a small practice .

Quote
THIS time, an Oncologist diagnosed me as having Stage 4 Castration Resistant Metastatic Prostate Cancer.

Which,PLEASE NOTE,is NOT the form of cancer that I have,but it seems you also have lymph gland problems,so make DAMN SURE you get that checked out,also, Just because you may now have prostate cancer,doesn't mean you can't also have lymphoma.

Or some other diagnosed form of cancer that is making the primary cancer you are being treated for harder to treat.

 
Quote
I remained awake through my last Biopsy. My 2 Doctors doing the biopsy Asked me if I I had Ever Had Cancer Before!

I said NO!

Rookie mistake. You NEVER answer a question like when asked by doctors with the word "NO!". You ain't filling out an insurance policy application. You are a patient with medical problems,and the doctors have reasons to ask this of you or they wouldn't have asked it. In cases like this the answer should ALWAYS be some form of "Not as far as I know,but I guess it is possible."

These people are clinic docs. When someone gives them a definitive "No",due to their professional experiences,tend to THINK that this means you have been tested in the recent past and diagnosed as being cancer-free. Make sure you clear up any little misunderstanding like that at the start by NEVER giving a straight,unadorned "No" answer to such an important question. Remember,for all these guys know,you were given a clean bill of health by the Mayo Clinic a month ago. They know NOTHING about your medical treatment in the past that you don't tell them.

Quote
From what I can gather I have some black/blackish material between my Lymph Nodes and the surrounding tissue.

I don't even have a clue about this,but would suggest that maybe you do a google search using your symptoms as key words,and then look for discussion groups that have cancers that may be related. You may not find the perfect answer at a discussion group,but it is likely you can find an answer that will give you an idea about what questions you need to ask your surgeons.


Quote
So far, my body has Stopped 2 global chemotherapeautic agents dead in their tracks: Zytiga and Oxytaxel. My Next chemo will be Bevnan (Cabrizataxel).

I don't understand that. MY understanding,and I CAN be wrong,is that these days they tailor-make patient-specific chemo blends for each patient,so how can your system be rejecting it?

This is WHY they tailor-make patient-specific and cancer-specific chemo brews.

 
Quote
If Not, has anyone Had this odd material and it's Condition actually Med Lab Identified?

I didn't see it,but I was later told by the surgeon that I was leaking black pus from my scrotum when I got to the ER with flesh-eating bacteria. Scared them so badly they burned all my clothes. They never named it,though. Said it smelled "like a open grave" and scared them.

Quote
It's more than an Academic question for me because my, uh, Team of Medical All Stars could Use a Direction to Look into, as I have run out of time.

IMHO,you need a new All Star team. See if you can get a consult appointment with the Mayo Clinic or some other major clinic. Get copies of all your lab reports and doctors reports and make copies of them to mail out or fax. Call the major hospitals in your state that have cancer centers and see if you can get them interested. Once again,have data to fax or mail to them immediately.

Get proactive on a state-wide level while trying to work major US cancer centers in the background. You can find them by doing a web search for "major cancer research hospitals".

Do this TODAY!

 
« Last Edit: May 13, 2019, 01:43:21 pm by sneakypete »
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Offline To-Whose-Benefit?

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Morning Pete.

Last Week (thanks to the 2nd chemo) I wound up down on one knee unable to stand without help. (1st time in over 50 years.)

10 days later I get Another HHA worker. Out of the blue. Wants to do a Speech Apptitude test.

Within 3 words I threw her out.

The 9 scariest words in the English Language?

"We're from the Govt and we're here to help."
« Last Edit: May 13, 2019, 02:13:14 pm by To-Whose-Benefit? »
My 'Viking Hunter' High Adventure Alternate History Series is FREE, ALL 3 volumes, at most ebook retailers including Ibooks, Barnes and Noble, Kobo, and more.

In Vol 2 the weapons come out in a winner take all war on two fronts.

Vol 3 opens with the rigged murder trial of the villain in a Viking Court under Viking law to set the stage for the hero's own murder trial.

http://wulfanson.blogspot.com

Offline jafo2010

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I noticed this thread, read through it, and thought I would contribute some lessons learned in my life.

1993 I was a Financial Planner, investments and insurance, etc, and I scheduled an appointment with a couple that were referred to me.  Met them at their house where when I first sat down with them the husband said, 'don't know who you are, don't care, just get the f out of my house.  I scheduled the appointment with the wife. 

His name was Al, and one month prior to meeting him, he was reaching for a glass out of the cubboard and snapped a bone in his arm.  He was diagnosed with two forms of terminal cancer, multiple myeloma, and the end stage of prostate cancer.  Doctors gave him 2-3 months to live.  They immediately started him on Chemo.

Al was a tough minded business man, so he started doing his own research.  He discovered that using mega doses of shark cartilage had an impact on 60% of those with soft tissue cancer.  So, he started the program.  In a very short period of time, his prostate cancer went away, and his multiple myeloma went into full remission.

Al lived 5.5 years longer, living a normal life, running his business, playing golf, etc, and when he died, it was due to a terrible fall he took which shattered his pelvis in multiple places.  During those years, he and his wife became like a second set of parents and close friends.  I dined with them regularly, and learned a great deal from him.  He had a major influence on me and my mindset regarding cancer.  And BTW, his oncologist would refer his patients to Al to explain the benefits of the cartilage.  His doctor could not EVER mention cartilage because it is not a recognized therapy by the AMA.  His doctor admitted it was the cartilage and not the chemo or radiation that worked on Al.

It was about three years after I met him that my own father was diagnosed with lung cancer.  When I first learned his condition, I told him, at Al's insistence about the shark cartilage, but my parents were the type of people that if the doctor did not tell them to do it, they ignored the advice.  So my father went through chemo and radiation, and six months later was given a clean bill of health from the good doctors.

Six months later, he developed a metastasized tumor in his esophogus.  He could no longer swallow food, not even his saliva without choking.  Doctors inserted a feeding tube in his abdomen, and they told him he had 2-3 months to live, that he was maxed out on chemo and radiation, and offered NOTHING therapeutically for my father.  They said, get your affairs in order, there is nothing we can do.

I then sat down with my parents, and I asked my father, do you want to live?  Of course he looked at me like I was an idiot, but he responded, absolutely.  So I said, are you ready to listen to me now?  He said, what do you want me to do?  I said, take the shark cartilage.  So, he agreed to do it.

My father lived two years taking the shark cartilage.  And then he stopped one day, because while he could not swallow, from his incessant coughing, he would regurgitate the content of his stomach, and he did not like the then fishy taste of the cartilage, so he stopped taking it.  My father was as finicky a person as I ever knew.  He would not eat guaccamoli because of the color, etc

In one month a tumor popped out on his leg, and doctors surgically removed it.  In one more month he was dead.  The cartilage halted the grow of the tumor in his esophogus and allowed him to continue to live his life.  And he did maintain a relatively normal life.  He was a rabid Steeler fan, and he and his best friend went to every home game.  The two of them and the wives were also rabid bridge players, playing bridge every week for roughly 35+ years of their lives together.  And of course, he got to enjoy his family, for we all at the time lived within 3 miles of one another.

Bottomline, I could go through a dozen case studies of people that I encouraged to take shark cartilage.  In every case, it was after there was no hope left from doctors and conventional medicine, and in every case, their lives were prolonged by years!

If you go online, you will see a number of articles that say it is all bullsh*t.  It is not.  Both my mother and mother-in-law benefited from the shark cartilage.  Both were survivors of prior bouts of cancer, both turning up with breast cancer, again!  In my mother's case, the doctor told her the chemo and radiaiton was not helping to shrink her tumor.  She also had breast cancer on her cleavage.

Now my mother was worse than my father about doing only what the doctor said, so it was not until he said his therapies were not working and my sister nagged her for hours each day that she relented.  She took the cartilage, and the cancer on her cleavage went away in one month.  When she went to the doctor, he all but fell out of his shoes in shock, according to her.  He said her tumor was shrinking, and she never mentioned she was using shark cartilage to him.  She was progressing to be free of cancer when she too took a tumble down a staircase, cracked her head open and died the next day.

So, not to bore all of you to death, there is a lot to know about cartilage and other things that greatly benefit those with cancer that doctors will never tell you.  Rather than bore you to death, I am happy to discuss what I know with anyone interested in talking further.  And by the way, my mother-in-law was a physician, a pathologist, and her life was prolonged two years as well.

Feel free to contact me.  My email is medpgh@gmail.com
And note, I am not selling anything, but I am always happy to help others, particularly against one of the ugliest diseases I know.
« Last Edit: March 24, 2020, 05:13:30 am by jafo2010 »

Offline To-Whose-Benefit?

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What to expect.

Last week I went down on one knee in the kitchen, it wasn't a Fall but down on one knee and a cane without the strength to haul myself back up.

Against better advice I let someone call an Ambulance and take me to a hospital.

Once there I was put in an Anti Fall Unit, assigned a boundary buzzer bead, and given Crap crap ever time I Tried to go to to to the can (with a bad prostate to boot, every 20 minunets. "Don"t Do That!"

And as a suspected Sedative Seeker, ignored for pain meds. (Hell of a way to fight cancer.)

Anyway, hardly the 1st time I been treated like shit by a hospital. Ignored and left unwashed for 48 hrs in a wet Hsp bed.

With an open streak of Stinking racial animus


And Currently dealing with a possible broken shoulder from an over zealous ambulance crew.
« Last Edit: May 15, 2019, 02:55:52 pm by To-Whose-Benefit? »
My 'Viking Hunter' High Adventure Alternate History Series is FREE, ALL 3 volumes, at most ebook retailers including Ibooks, Barnes and Noble, Kobo, and more.

In Vol 2 the weapons come out in a winner take all war on two fronts.

Vol 3 opens with the rigged murder trial of the villain in a Viking Court under Viking law to set the stage for the hero's own murder trial.

http://wulfanson.blogspot.com

Offline To-Whose-Benefit?

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Anyone got 2 cents here?
My 'Viking Hunter' High Adventure Alternate History Series is FREE, ALL 3 volumes, at most ebook retailers including Ibooks, Barnes and Noble, Kobo, and more.

In Vol 2 the weapons come out in a winner take all war on two fronts.

Vol 3 opens with the rigged murder trial of the villain in a Viking Court under Viking law to set the stage for the hero's own murder trial.

http://wulfanson.blogspot.com

Online berdie

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Anyone got 2 cents here?



For my 2 cents...I think you are a tough hombre that will over come this.  In spite of it all.

Offline Gefn

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For my 2 cents...I think you are a tough hombre that will over come this.  In spite of it all.

He is! I’m up visiting him and just gave him a much needed pedicure. ❤️🐱
G-d bless America. G-d bless us all                                 

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Offline To-Whose-Benefit?

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Hey @berdie

Thanks. Worst case is I die in the stinking Communist CT Hamlet I was dropped in, and be Buried there till the jackass town at Some point finds yet Another moronic penny grubbing excuse to invoke emminent domain, Again.


For my 2 cents...I think you are a tough hombre that will over come this.  In spite of it all.
« Last Edit: May 16, 2019, 01:03:57 am by To-Whose-Benefit? »
My 'Viking Hunter' High Adventure Alternate History Series is FREE, ALL 3 volumes, at most ebook retailers including Ibooks, Barnes and Noble, Kobo, and more.

In Vol 2 the weapons come out in a winner take all war on two fronts.

Vol 3 opens with the rigged murder trial of the villain in a Viking Court under Viking law to set the stage for the hero's own murder trial.

http://wulfanson.blogspot.com

Offline mountaineer

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Very interesting and potentially helpful into about the shark cartilage, @jafo2010   Thanks.
btw, I'm also a yinzer!  :beer: (those are tiny IC lights, which I'd never drink but seem to exemplify da Burgh).
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Offline To-Whose-Benefit?

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 Hallmarks of Socialized Medicine; Racism/Class Warfare. All Free/All Equal/in this case, intake processing cubicles at street level on a wind protected Ally. So They sit outside as the sun falls and launch Marxist Insults in through the back windows, which of course upset the license holding Workers who, while sympathetic, have a real Check, and are despised for it.

So who do They take it out on?

You Betchum.

I got Stage 4 paperwork and DEA controlled meds to be ignored, . . .
 .

A Real Workers Paradise.



My 'Viking Hunter' High Adventure Alternate History Series is FREE, ALL 3 volumes, at most ebook retailers including Ibooks, Barnes and Noble, Kobo, and more.

In Vol 2 the weapons come out in a winner take all war on two fronts.

Vol 3 opens with the rigged murder trial of the villain in a Viking Court under Viking law to set the stage for the hero's own murder trial.

http://wulfanson.blogspot.com

Offline To-Whose-Benefit?

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He is! I’m up visiting him and just gave him a much needed pedicure. ❤️🐱

Hahaha.

If the. nails had gone any longer they would have qualified in a Vampire Flick for some grisly trimming scene.

I'm only surprised they didn't bleed as it was.
« Last Edit: May 16, 2019, 01:44:19 am by To-Whose-Benefit? »
My 'Viking Hunter' High Adventure Alternate History Series is FREE, ALL 3 volumes, at most ebook retailers including Ibooks, Barnes and Noble, Kobo, and more.

In Vol 2 the weapons come out in a winner take all war on two fronts.

Vol 3 opens with the rigged murder trial of the villain in a Viking Court under Viking law to set the stage for the hero's own murder trial.

http://wulfanson.blogspot.com

Offline LegalAmerican

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Thanks. Same for you.

No radiated pellets implanted?  More direct.pin pointed.   Best wishes . 

I had chemo & radiation.  I would NEVER do radiation again
« Last Edit: May 16, 2019, 02:01:57 am by LegalAmerican »

Offline To-Whose-Benefit?

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No radiated pellets implanted?  More direct.pin pointed.   Best wishes . 

I had chemo & radiation.  I would NEVER do radiation again


Sounds like my last go round with chemo.

Before This Crap, I had no trouble squatting a lousy 225lbs. Radiologist said hang it up you risking a bone/joint fracture.

Two weeks ago I couldn't hoist a lousy 210lbs/my own carcass weight on just ONE KNEE.

I Watched the chemo burn my muscles Off like napalm. Loose chunks of them!

Unfortunately it's Got to be chemo now (stage 4) to get At the Mets.

Radiation will at best give you a Precision Game of Whack a Mole. ( And hope you don't Miss any of them).
My 'Viking Hunter' High Adventure Alternate History Series is FREE, ALL 3 volumes, at most ebook retailers including Ibooks, Barnes and Noble, Kobo, and more.

In Vol 2 the weapons come out in a winner take all war on two fronts.

Vol 3 opens with the rigged murder trial of the villain in a Viking Court under Viking law to set the stage for the hero's own murder trial.

http://wulfanson.blogspot.com

Offline truth_seeker

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No radiated pellets implanted?  More direct.pin pointed.   Best wishes . 

I had chemo & radiation.  I would NEVER do radiation again

I did 44 daily radiation treatments. Pretty standard I understand. About July 1st I do a PSA blood test. Then visit the oncologist, to learn if the radiation got all or most of it.


« Last Edit: May 17, 2019, 03:21:52 am by truth_seeker »
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Offline sneakypete

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I did 44 daily radiation treatments. Pretty standard I understand. About July 1st I do a PSA blod test. Then visit the oncologist, to learn if the radiation got all or most of it.

@truth_seeker

Here is hoping it works out for you as well as it did for my friend. He had radiation treatment 5 days a week for 9 weeks,plus a few weeks of once a week chemo,and when he went for his appraisal last Friday I was dreading the phone call from his wife because I just KNEW he was dying and there wasn't a thing they could do to stop it. His arms were less than half the size they had been before he got sick,and they were never big to start with.

Damned if they didn't tell him the tumor was gone!

You can never really tell by looking.

Yeah,he is still as weak as a kitten and most likely has several months to slowly and carefully try to build his strength back up before he is half of what he was,but the point is HE WILL BE HERE TO SLOWLY BUILD HIS STRENGTH BACK UP.
Anyone who isn't paranoid in 2021 just isn't thinking clearly!

Offline To-Whose-Benefit?

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Can't say exactly How @truth_seeker feels though I Expect, .  . . . We 're Both Real Appreciative of all the prayers and such are received on Both of our behalfs.

Ain't NO amount of money worth a beautiful sunrise with a beautiful lady. More the merrier, and only One place I Know to get them.

So @truth_seeker I'm setting up my God Box, and hoping there'll be Plenty of Kind Reminders in there for all of our Buddies here.

But why God, and not just science?

Count up all those years.

Too many other variables.

Not being a Scripture Hound I can tell you all, I Want to believe. But I can't tell you what Else I believe.

And I'd like to see all you Others who Want To Believe, get to Take that Journey.

Because Taking the Journey itself is the real prize. Not Holding the Deed, but taking the Trip!
« Last Edit: May 16, 2019, 04:22:32 am by To-Whose-Benefit? »
My 'Viking Hunter' High Adventure Alternate History Series is FREE, ALL 3 volumes, at most ebook retailers including Ibooks, Barnes and Noble, Kobo, and more.

In Vol 2 the weapons come out in a winner take all war on two fronts.

Vol 3 opens with the rigged murder trial of the villain in a Viking Court under Viking law to set the stage for the hero's own murder trial.

http://wulfanson.blogspot.com

Online Sighlass

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@Smokin Joe

Know anything 'bout the discolored tissue abutting lymph nodes that @Sighlass is talking about Joe? Sounds like what I've hade for at least 25 years. Docs dunno so they all wanna put me in in freaking Hospice and write us us both off as incurable cancer patients. ???

I am also at a loss here TWB... I don't know the post  you are talking about. I don't remember talking about such.... Perhaps you can set me straight if I mislead you in any way.

That said, you are in my prayers sir. I wish I could do more and offer better advice. As is, I just sit here and remember that no matter how much I ache at times, there is those here that would trade places with me in a NY minute. That my sufferings are pale and I should be more thankful for what I have.

As I said, you are remembered in prayer here.
Exodus 18:21 Furthermore, you shall select out of all the people able men who fear God, men of truth, those who hate dishonest gain; and you shall place these over them as leaders over ....