Share your cancer journey - and any other personal medical advice

[sneakypete]

@mystery-ak  @Right_in_Virginia  @EdJames  @Victoria33  @Freya  @Bigun  @SZonian  @Cyber Liberty  @roamer_1  @Sanguine @truth_seeker @RoosGirl @DCPatriot  @To-Whose-Benefit?  @BassWrangler  @Lando Lincoln  @mountaineer  @Elderberry  @GT Hawk  @berdie @Sighlass  @Applewood

http://www.gopbriefingroom.com/index.php/topic,344993.0.html

 

 
Part 2

So now that we have the history taken care of,we get to present time,that SEEMS to have began with my cancer diagnosis.

For months now my left leg has been so swollen with pus that I can only wear big overalls or shorts. My left is too big to fit into regular pants. It is not black and purple like it was the last time it was seriously infected,but it does hurt like a bastard. It is not unusual for me to go two days in a row with no sleep or only a couple of hours,thanks to the pain.

So I decide to go to a different VA hospital that is about 250 miles away because I have  heard so many good things about it,and sure enough,it is so different the staff there might as well be aliens from another solar system. Maybe THE nicest bunch of people I have ever dealt with,as well as the most helpful. No,I did NOT get to see a vascular surgeon that day. The system just isn't set up that way,but I did get an appointment to see one  a few weeks later,and it was a real revelation when I did.

Within 10 minutes of my scheduled appointment the surgeon himself walked out into the waiting room,introduced himself,shook my hand,and led me back to his office to have me explain my problems,answer his questions,and have him do an ultrasound test on my left leg.

When he finishes,he tells me "The bad news is that the VA is not equipped to deal with your problem,but I have a few ideas and need to talk with the chief of surgery to see what we can do. Please sit tight. I should be back in a few minutes."

When he came back he has the Chief of Surgery with him,and she smiled at me,shook my hand,and told me they had decided that I needed to be sent to a private clinic that WAS equipped and qualified to deal with my problems,and to not worry about the expenses because they would have the VA pay all the expenses under their "fee basis program".

Not only that,but the private clinic was only 130 miles from home,and they also told me they would pay my travel expenses and motel expenses.

Sooo,they sent me home to wait.

Then the whole Covid-19 thing blew up,which means that both the VA hospital AND the private clinic lost at least 1/3rd of their available patient rooms.  Not to mention their  staff.

Which means that the bean counters that run the private clinics start to pick and choose patients based on their health insurance plans.

Which means a few months later I got a  letter from the director of the private clinic telling me I do NOT have "a vascular problem,but a wound care problem,and they do not do wound treatment,so were referring  me back to the VA for treatment."

The SAME VA whose Chief of Vascular Surgery had told me they were not equipped to treat me,and referred me to that private clinic because they could,and because the clinic had a contract with the VA to treat VA patients the VAMC couldn't help.

A short time later I get a letter in from that same VA hospital telling me I have an appointment at their wound treatment clinic in 30 days or so,and that if I miss that treatment it can result in the loss of my "privilege" to be treated at the VA hospital.

These cretins expect me to drive over 500 miles round trip and rent a motel room overnight,JUST TO GET A FREAKING BANDAGE CHANGED,and are threatening to remove my VA Hospital privileges if I miss the appointment.

Keep in mind that I am changing these bandages 2 to 3 times a day myself,right here in my house.


Sooo,I called my new Congresscritter about this,and learned that "Due to Covid-19 our office is closed,so please call XXX-XXXX."

I call that number and get his office assistant who is now running his office from her home. I told her about this and even sent her an email,but to be  honest I was so out of it at that time due to fever and Oxy that I have no idea what I said or what she said to me.

Been meaning to call her back,but due to fever and being bombed with pain pills,I kept forgetting.

Now the pain is worse than ever,my fever is returning,and the local doc is refusing to refill my Oxy prescription because he is "afraid you will become addicted".

On top of that the vascular surgeon at the good VA hospital is not returning my phone calls or emails. For all I know,he may have been put on leave as the VA cut operating staff due to Covid-19.

Frankly,I am running out of options as well as patience. In NORMAL times,I honestly don't think this would be much of a problem,but thanks to Covid-19 the whole damn world seems to be in a full-fledged panic,and it is impossible to maintain communications.


I can NOT be the only one having these communication/appointment problems.

Any suggestions that doesn't involve rifles?

[sneakypete]

I realize I'm dumb, but I'd like to ask:

If treatment in the VA health system is bad, why don't veterans just sign up for Medicare at age 65, and forget about the VA?

Is that prohibited by law, or something?

@Fishrrman

No,in fact,enrollment in Medicare is automatic on your 65th birthday.

The problem is Medicare does not pay ALL the bills,leaving you holding the bag for other bills you can't afford to pay.

And to be honest,in this day of "Big Corporate Hospital,Inc",even local hospitals are picking and choosing their cases. My "local" hospital (only about 25 miles away) used to be pretty good,and some of the local doctors were DAMN good!

Then "Big Corporate Hospital,Inc" moved in and bought the local hospital,as well as all the private practices of the local docs.

Remember my story of the local vascular surgeon who originally saved my leg? He is still there,but I can no longer see him because I have to schedule the appointments through his new masters at "Big Corporate Hospitals,Inc",and they channel me through their "wound treatment care program" every time I try,which has been 3 times now. When I go there,hoping to get  a referral to the vascular surgeon,the only thing that happens is some rube changes the bandages on my leg,and they don't even do a good job of that. The last one seemed better suiting to fixing flats at a tire store than working in the medical field.

3 visits now,3 times I have tried to get a referral to the vascular surgeon,and the last time had a really snotty nurse actually laugh at me when I asked.

IF I could see that doc,he could and would help me,but I can never get to see him.

My OPINION is that I never get to see him because it is more profitable to schedule other people,and there are only so many hours in a day that people can be billed.

If this isn't happening where you live yet,keep an eye out and start public protests when it does.

Do NOT listen to the local docs who tell you they will never sell out to the Borg. They will. I now have 3 good docs I used to see locally who made the same claim,but eventually they caved and sold out.

Billionaire corporations who are only interested in total domination and profits are almost impossible for a MD to fight. The only private doc I have left is my heart surgeon,who is in his late 70's,has a huge patient base,and can't be bought out because he loves his job and already has more money than his grandchildren can spend.

[Bigun]

@sneakypete I'm sorry to hear about you having to go through all that and wish I had some helpful suggestion for you but I don't.  It thoroughly pisses me off that a guy like you, who gave so much, gets treated like that but it seems that I'm unable to do anything about that either.  The gooberment only needs us when they have some dirty work to do somewhere and once we are used up and/or they no longer need us you are on your own.

[mountaineer]

I'm with Bigun, @sneakypete - angry on your behalf, but feeling powerless. 

[skeeter]

I'm with Bigun, @sneakypete - angry on your behalf, but feeling powerless. 

'Powerless' is a perfect adjective to describe alot of things lately.

[sneakypete]

'Powerless' is a perfect adjective to describe a lot of things lately.

@Bigun @mountaineer @skeeter

Yup! That's why politicians love bureaucracies so much. ;They can hide behind them any time they want,and nobody can find their complicity in any illegalities if they don't want them to be found.

 "Iz not my falts,man!" seems to be the mating cry for bureaucrats.

If you can just manage to back one into a corner and get your hands around his throat,you can get him to listen to reason. Otherwise you are on your own unless what you happen to want is also something he or she happens to want. They will then promote it as a unselfish act to help their constituents.

[skeeter]

@Bigun @mountaineer @skeeter

Yup! That's why politicians love bureaucracies so much. ;They can hide behind them any time they want,and nobody can find their complicity in any illegalities if they don't want them to be found.

 "Iz not my falts,man!" seems to be the mating cry for bureaucrats.

Thats when you can get them to admit there's a problem.

[sneakypete]

Thats when you can get them to admit there's a problem.

@skeeter

Yeah,but you can't get them to do something about it unless you can convince them it is in their own best interests to do so.

[skeeter]

@skeeter

Yeah,but you can't get them to do something about it unless you can convince them it is in their own best interests to do so.

Of course. Government now exists solely for its own sake. We're just its host.

[roamer_1]

@sneakypete

I had much the same frustrations... And why I walked off. The money ain't in the healing, the profit is in the maintenance. They'll keep you coming back till you play out. You do well to see it for what it is.

So I went off the reservation and went my own way. Had I not, I would likely be dead. Them sombiches had me on buckets of pills that did nothing, and fought with me over pain relief. For years. YEARS.

I had a God moment FWIW, though I know your position on that, so  won't bore you with the miracle... But I will tell you this: Seven YEARS I spent in that damnable wheelchair, in screaming-yellow-bobsled-run-from-hell pain. I held my mud and water all damn day so I would only HAVE to get up once to do my business and maybe bath if I could stand long enough. I slept in 10 minute naps, all the time... nodding off to sweet relief, only to jolt back awake from the pain... for seven_very_long_years.

Then I went alt-med, and the miracle aside, it was a Cheyenne medicine man that brought me healing. A month after I went away from the vultures at the hospitals, I was walking, and relatively free of pain. And what worked was native medicine and hillbilly remedy (which are largely the same thing), with a good bit of health through diet and naturopathy.

If you need to be sawed on, unless you know a good vet that will work with you, you are stuck with the western docs. And probably rightly.

But an at-med doc would have perked up finding out that silver was kicking ass... Don't do it without a healer, preferably a western doc w/ an alt-med side-hustle, but I know damn well that hearing that, my doc would have put me on a colloidal silver regimen... That is taken IN not on. Best be careful with that, because you sound so infested that the die-off has to be a controlled thing, or all the dead bugs in you will cause you to go septic, and might just kill you.

And there are natural meds that help a lot reducing swelling and increasing circulation. Hell, a  good sweat will do wonders. It can't hurt to seek alt-med. Considering your ancestry I imagine you can get something  going with the natives. And you are back in the sticks, so I imagine you can get at the hillbillies... Careful going on though. find a healer by word of mouth. There are just as many shysters on that side of the fence as where you are now.

Scares me though - not in that they can't fix a lot, but it sounds like some of this is going to be fixing what western docs did wrong and artificially... which shit is likely beyond any help without digging around, hence back to the surgeons.

The only other option I see is to go full bore western med. Buy into Humana or some other insurance plan that will cover the contingencies that medicare won't cover and knock the balls to the wood in conventional med away from the VA. Rack up a bill if you have to - you can always take a medical bankruptcy after the fact, or a full bankruptcy if it is needed. And it would serve em right after all you've been through. They've sucked enough of you up by now.

If it goes there... they can't take pensions. They can't take your house, nor can they take your last means of transportation. Any bank accounts otherwise can be attached, and anything titled otherwise can be taken, so conduct yourself accordingly well before the fact.

And finally - if the lymphoma was a misdiagnosis, why the hell are you still enduring chemo?

[Applewood]

@sneakypete

Sorry to read about all your troubles, man.  You are correct that Medicare alone won't cover everything; you would need a supplemental policy.  But good luck trying to get one with your health issues (pre-existing conditions). 

I'm angry that the VA does not take care of our veterans.  Politicians of both parties promise improvements, but it gets worse instead of better  Despite all the lip service, no one in DC really cares about our vets.

Don't know where you live, but...is there a hospital near you that is university-affiliated?  I'm lucky where I live to have available a number of choices, including several university owned hospitals.  In  complicated cases like yours, they have the expertise and experience.  They know all the latest research and may have done research themselves. 

Of course, the hard part is getting an appointment to see anyone.  With COVID, hospitals and doctors have their hands full.  They have pushed anyone with other health issues to the back of the line as far as health care is concerned.  You will find that to be true, no matter where you go.

I know what you mean about corporate hospitals, but these days independent hospitals are disappearing simply because they don't have the resources to survive.  But for some hospitals, going corporate has actually improved them.  I have one formerly independent hospital about a mile or two from my house.  For years that place was a cesspool.  I would travel long distances to much better university-related hospitals rather than take my chances with the hospital closest to home.  But since that hospital is now part of a corporate health system, it has very much improved. 

Anyway, I do wish you well and hope you can get in to see doctors and staff who know what the H they are doing.   

[DB]

@Bigun @mountaineer @skeeter

Yup! That's why politicians love bureaucracies so much. ;They can hide behind them any time they want,and nobody can find their complicity in any illegalities if they don't want them to be found.

 "Iz not my falts,man!" seems to be the mating cry for bureaucrats.

If you can just manage to back one into a corner and get your hands around his throat,you can get him to listen to reason. Otherwise you are on your own unless what you happen to want is also something he or she happens to want. They will then promote it as a unselfish act to help their constituents.

I think politicians love bureaucracies because no one can be held accountable while at the same time allowing the expansion of power to themselves. Bureaucracies are essentially a big circle jerk that allows everyone involved to point the finger elsewhere while getting paid well.

[berdie]

@sneakypete This is all kinds of wrong. I am mad for you.

[sneakypete]

@sneakypete

Sorry to read about all your troubles, man.  You are correct that Medicare alone won't cover everything; you would need a supplemental policy.  But good luck trying to get one with your health issues (pre-existing conditions). 

I'm angry that the VA does not take care of our veterans.  Politicians of both parties promise improvements, but it gets worse instead of better  Despite all the lip service, no one in DC really cares about our vets.

Don't know where you live, but...is there a hospital near you that is university-affiliated?  I'm lucky where I live to have available a number of choices, including several university owned hospitals.  In  complicated cases like yours, they have the expertise and experience.  They know all the latest research and may have done research themselves. 

Of course, the hard part is getting an appointment to see anyone.  With COVID, hospitals and doctors have their hands full.  They have pushed anyone with other health issues to the back of the line as far as health care is concerned.  You will find that to be true, no matter where you go.

I know what you mean about corporate hospitals, but these days independent hospitals are disappearing simply because they don't have the resources to survive.  But for some hospitals, going corporate has actually improved them.  I have one formerly independent hospital about a mile or two from my house.  For years that place was a cesspool.  I would travel long distances to much better university-related hospitals rather than take my chances with the hospital closest to home.  But since that hospital is now part of a corporate health system, it has very much improved. 

Anyway, I do wish you well and hope you can get in to see doctors and staff who know what the H they are doing.

@Applewood

The closest VA hospital to me is in Hampton,VA,and even that is  several hours away.  I have been told it is rated as the 4th worse VA hospital in the nation,and believe it. Mostly populated by blacks and former sailors,if you are former US Army or USAF,you have a hard time even getting a clerk to talk to you. If you are white,you can also sense a "certain attitude". This MAY have changed some since the last time I was there,though. Most of the shitheads that gave me so much trouble in the past are retired now.

If you can't beat the bastards,outlive them!

After reaching across the desk and dragging the VA puke operating it closer to me so he could hear me better twice,I no longer go there.

I will admit that the last time I went there was maybe 2 years ago,it was a thousand times better than it used to be.

Which ain't saying much.

[sneakypete]

@sneakypete

I had much the same frustrations... And why I walked off. The money ain't in the healing, the profit is in the maintenance. They'll keep you coming back till you play out. You do well to see it for what it is.

So I went off the reservation and went my own way. Had I not, I would likely be dead. Them sombiches had me on buckets of pills that did nothing, and fought with me over pain relief. For years. YEARS.

I had a God moment FWIW, though I know your position on that, so  won't bore you with the miracle... 

@roamer_1

 I never argue with anything that works,but I also realize the just because something works for one patient,that doesn't mean it will work for all patients.

Never underestimate the power of faith,although this does NOT necessarily mean "religious faith". It CAN mean that,though. Faith is faith,and there is power in positive thinking.

[libertybele]

@sneakypete I am so sorry to hear what you are going through.  My immediate thought is why isn't the VA sending a home health nurse to your home to help with treatment and bandaging; the least that they could be doing.

I'm angered at the treatment or lack of treatment, compassion and consideration that you are getting from the VA. That is unacceptable. 

It was my understanding that with new laws in place that the VA had to treat and pay for a facility for you to go to that was closer and it does NOT have to be a VA facility.  My father-in-law who was a WWII vet went to local doctors/specialists because the VA specialist that they wanted him to go to was over 100 miles away.  After my husband began making demands they finally paid for a local specialist that he saw and they coordinated also with Hospice care, but he had to see the local VA doc once a month to ensure that the VA would still pay for his treatment.

I wish I had some answers. I will continue to pray for you and may God heal you and give you relief from pain so that you can live in comfort and get some rest!

God Bless You @sneakypete

[libertybele]

@sneakypete   I am hoping that somehow this may help you and maybe you've already been down this route ...  Trump signed a law called the VA Mission Act last June....here is an excerpt ...

WASHINGTON – Veterans will have expanded access to medical care outside Department of Veterans Affairs facilities beginning Thursday under a law signed by President Donald Trump last year and touted as a major achievement by Trump on the campaign trail.

Rules established under the law and published Wednesday in the Federal Register say the VA will pay for veterans to see non-VA doctors if they have to wait longer than 20 days or drive more than 30 minutes for primary or mental healthcare at a VA facility.

For specialty care, they can see private doctors at VA expense if they have to wait longer than 28 days or drive more than an hour to see a VA provider.

Previously, veterans who had to drive more than 40 miles or wait longer than 30 days could choose to see a private doctor paid for by the VA.

VA officials previously estimated the new rules could increase the number of veterans eligible for VA-sponsored private care to as many as 2.1 million – up from about 560,000.

The rules going into effect Thursday also allow veterans to go to non-VA urgent care clinics at VA expense without prior approval, though they may have to pay a co-payment.

Trump signed the law last June, known as the VA MISSION Act, but its key provisions didn’t take effect until now.

[sneakypete]

@sneakypete 

It was my understanding that with new laws in place that the VA had to treat and pay for a facility for you to go to that was closer and it does NOT have to be a VA facility.

 


That is true and that IS what the VA did,but what are you going to do when that civilian facility refuses to treat you by making a bogus claim you are seeking wound treatment instead of cancer treatment. This is PRECISELY what the civilian clinic the VA referred me to claimed.

It is MY theory the reason they are doing this is two-fold. First of all,the VA doesn't pay as much as private insurance companies.

Secondly,with this bogus Covid-19 crap ALL those clinics have lost 1/3 of their rooms,which means they have lost 1/3 of their income. Put the two together,and it seems obvious to ME they are using bogus data to turn my down so they can use that room for a civilian with an insurance company that pays the full amount charged.

And since they are a civilian organization,there isn't a damn thing I or the VA can do about it.

I GUESS the VA could threaten to cancel all future contracts with them on grounds of breach of contract,but I am also guessing the VA Wusses are afraid that will backfire on them and the private companies would then refuse ALL VA patients. This would NOT hurt the VA,but it would hurt the patients they seek outside care for.

Just a guess,but it is the only thing that makes sense to me.

What we NEED is for a few congresscritters to get together and threaten to fine all those private companies for breach of contract and fraud,but it would take stones to do that because the private health care companies are no doubt lining the pockets of the legislators to prevent that from happening,so it ain't likely to happen.

 
BTW,went to see a local doc today,and she gave me some painkillers and anti-biotics that really turned me around. I was having chills and fevers,and wanting to vomit when I went to see her,but within a hour of getting the scripts filled and taking them,everything is damn near peachy-keen now.

I used to live with her mother and have known her since she was born. Those are the kind of connections we all need. Didn't even have an appointment. I just walked in and told my ex I needed some new meds,and how bad I was feeling,and she went right into her daughter's office and arranged it all.

The only thing scary is  she looks exactly like her mother did at that age,and there has been nothing in my life that has scared me as much as her mother.

[sneakypete]

@sneakypete   I am hoping that somehow this may help you and maybe you've already been down this route ...  Trump signed a law called the VA Mission Act last June....here is an excerpt ...

WASHINGTON – Veterans will have expanded access to medical care outside Department of Veterans Affairs facilities beginning Thursday under a law signed by President Donald Trump last year and touted as a major achievement by Trump on the campaign trail.

Rules established under the law and published Wednesday in the Federal Register say the VA will pay for veterans to see non-VA doctors if they have to wait longer than 20 days or drive more than 30 minutes for primary or mental healthcare at a VA facility.

For specialty care, they can see private doctors at VA expense if they have to wait longer than 28 days or drive more than an hour to see a VA provider.

Previously, veterans who had to drive more than 40 miles or wait longer than 30 days could choose to see a private doctor paid for by the VA.

VA officials previously estimated the new rules could increase the number of veterans eligible for VA-sponsored private care to as many as 2.1 million – up from about 560,000.

The rules going into effect Thursday also allow veterans to go to non-VA urgent care clinics at VA expense without prior approval, though they may have to pay a co-payment.

Trump signed the law last June, known as the VA MISSION Act, but its key provisions didn’t take effect until now.

@libertybele

THANK YOU ,THANK YOU ,THANK YOU!

You just made my year!. The closest hospital if more than 30 minutes from where I live. I will be copying and pasting your post to my desktop!

[libertybele]

 


That is true and that IS what the VA did,but what are you going to do when that civilian facility refuses to treat you by making a bogus claim you are seeking wound treatment instead of cancer treatment. This is PRECISELY what the civilian clinic the VA referred me to claimed.

It is MY theory the reason they are doing this is two-fold. First of all,the VA doesn't pay as much as private insurance companies.

Secondly,with this bogus Covid-19 crap ALL those clinics have lost 1/3 of their rooms,which means they have lost 1/3 of their income. Put the two together,and it seems obvious to ME they are using bogus data to turn my down so they can use that room for a civilian with an insurance company that pays the full amount charged.

And since they are a civilian organization,there isn't a damn thing I or the VA can do about it.

I GUESS the VA could threaten to cancel all future contracts with them on grounds of breach of contract,but I am also guessing the VA Wusses are afraid that will backfire on them and the private companies would then refuse ALL VA patients. This would NOT hurt the VA,but it would hurt the patients they seek outside care for.

Just a guess,but it is the only thing that makes sense to me.

What we NEED is for a few congresscritters to get together and threaten to fine all those private companies for breach of contract and fraud,but it would take stones to do that because the private health care companies are no doubt lining the pockets of the legislators to prevent that from happening,so it ain't likely to happen.

 
BTW,went to see a local doc today,and she gave me some painkillers and anti-biotics that really turned me around. I was having chills and fevers,and wanting to vomit when I went to see her,but within a hour of getting the scripts filled and taking them,everything is damn near peachy-keen now.

I used to live with her mother and have known her since she was born. Those are the kind of connections we all need. Didn't even have an appointment. I just walked in and told my ex I needed some new meds,and how bad I was feeling,and she went right into her daughter's office and arranged it all.

The only thing scary is  she looks exactly like her mother did at that age,and there has been nothing in my life that has scared me as much as her mother.

Good .... I am so glad to hear it.  Hopefully you'll be able to continue to get the care that you need (for what it's worth I've prayed for you in the past -- maybe some prayers have been answered? I know how you feel about that but ....) anyways I'm really glad for you.

As for looking like her mother .... the mind does wonderful things ... try imaging her as something or someone else.   

[sneakypete]

As for looking like her mother .... the mind does wonderful things ... try imaging her as something or someone else.   

@libertybele

Jabba the Hut would be great,but that is waaaay too big a stretch. Her mother was,and still is a very beautiful woman when she wants to get all dolled up,and the daughter is following in her footsteps by looking to be about half her actual age.

[Smokin Joe]

@skeeter

Yeah,but you can't get them to do something about it unless you can convince them it is in their own best interests to do so.

Do any of those sumbeeches want to be seen as crapping on a veteran? I know out this way that would not play well at all.

[sneakypete]

Do any of those sumbeeches want to be seen as crapping on a veteran?

@Smokin Joe

You  MEANT to type the words "right-wing reactionary",right?

[Sled Dog]

Well, okay, sharing is caring and all that.

I started getting fevers and turning yellow.   And itchy.  The jaundice caused by backed up bilirubin always itches like crazy.

Turned out to be some lump on my bile duct.   Had to go to a specialist before getting the ultrasound.  I decided to not take any Tylenol to drop the fever, so he sent me to the ER with a fever of 104.   That speeded things up quite a bit.

Biopsy was iffy, they weren't sure what it was.   They put a stent in the bile duct to drain the liver, because that was causing the infections and fevers.

I was getting better for a week or so, then getting worse.   Turns out the stent was too short.   Time to pop a new one in.

Then I got better and the surgery was scheduled.   

Oh, wait.  Gotta delay the cancer surgery, the surgeon's wife had a baby girl!  Hooray!

Then they cut me open.   Biliary cancer has something like a 60% two-year mortality rate.  Cool.

Turns out, after the scar from sternum to belly button, that I didn't have biliary cancer, I had ampulary cancer.  The ampulus is the teeny-tiny donut of a muscle that controls flow through the bile duct.   Totally encapsulated by the bile duct, no wandering cancer cells escaping to infect the rest of me. 

No cancer cells in the lymph nodes, the oncologists were bored with me and wanted nothing to do with me.   No chemo for me.

Then the fun started.    The procedure to treat biliary and ampulary cancer is the same, the Whipple procedure, where they surgeon plays "lets rearrange the plumbing" with my intestines.   

So I couldn't eat real food.   They at first forgot and sent me home, then called me back and gave me a permanent IV line in my arm.   And then prescribed this TPN food or whatever its' called, shot straight into my arm.

Full of carbohydrates and stuff.   Prescription mix, of course.

I'm a diabetic.  They forgot to prescribe the insulin to go in the mix.

I was feeling crappy and wasn't checking my blood sugar levels.   My 1528 didn't even break the hospital record.

So i spent another three weeks in the ICU/Rehab units.  Rehab was cool.  The guy on the bed across the room was a 95 year old marine who had been discharged in 1944 because a Jap had stitched some holes in his chest with a machine gun.  And the other guy was a 95 year old Air Corps man who had been made partially deaf by the noise of the machine gun in his B-17 ball turret.   

I lost 95 pounds thanks to that, and because the surgery was effectively a stomach bypass, I've regained just a bit of that and my weight is where the charts say it should have been.

What fun that was.   That was more than five years ago so my surgeon says I am officially "cured".

[BassWrangler]

Well, okay, sharing is caring and all that.

I started getting fevers and turning yellow.   And itchy.  The jaundice caused by backed up bilirubin always itches like crazy.

Turned out to be some lump on my bile duct.   Had to go to a specialist before getting the ultrasound.  I decided to not take any Tylenol to drop the fever, so he sent me to the ER with a fever of 104.   That speeded things up quite a bit.

Biopsy was iffy, they weren't sure what it was.   They put a stent in the bile duct to drain the liver, because that was causing the infections and fevers.

I was getting better for a week or so, then getting worse.   Turns out the stent was too short.   Time to pop a new one in.

Then I got better and the surgery was scheduled.   

Oh, wait.  Gotta delay the cancer surgery, the surgeon's wife had a baby girl!  Hooray!

Then they cut me open.   Biliary cancer has something like a 60% two-year mortality rate.  Cool.

Turns out, after the scar from sternum to belly button, that I didn't have biliary cancer, I had ampulary cancer.  The ampulus is the teeny-tiny donut of a muscle that controls flow through the bile duct.   Totally encapsulated by the bile duct, no wandering cancer cells escaping to infect the rest of me. 

No cancer cells in the lymph nodes, the oncologists were bored with me and wanted nothing to do with me.   No chemo for me.

Then the fun started.    The procedure to treat biliary and ampulary cancer is the same, the Whipple procedure, where they surgeon plays "lets rearrange the plumbing" with my intestines.   

So I couldn't eat real food.   They at first forgot and sent me home, then called me back and gave me a permanent IV line in my arm.   And then prescribed this TPN food or whatever its' called, shot straight into my arm.

Full of carbohydrates and stuff.   Prescription mix, of course.

I'm a diabetic.  They forgot to prescribe the insulin to go in the mix.

I was feeling crappy and wasn't checking my blood sugar levels.   My 1528 didn't even break the hospital record.

So i spent another three weeks in the ICU/Rehab units.  Rehab was cool.  The guy on the bed across the room was a 95 year old marine who had been discharged in 1944 because a Jap had stitched some holes in his chest with a machine gun.  And the other guy was a 95 year old Air Corps man who had been made partially deaf by the noise of the machine gun in his B-17 ball turret.   

I lost 95 pounds thanks to that, and because the surgery was effectively a stomach bypass, I've regained just a bit of that and my weight is where the charts say it should have been.

What fun that was.   That was more than five years ago so my surgeon says I am officially "cured".

I am glad you beat that cancer, and thanks for sharing this.

A good friend of mine was recently diagnosed with Cholangiocarcinoma, which sounds like a similar cancer, although it has a much lower survival rate. For him they are going to do this procedure where they drag a radioactive bead through the channel where the bile ducts are. This basically kills off the cancer, but also kills the liver, so after this they will need to do a liver transplant. He's camped out at an apartment in Minnesota, at the Mayo Clinic which is one of the few places in the US that does this procedure.