General Category > Health/Education
Share your cancer journey - and any other personal medical advice
sneakypete:
--- Quote from: Sled Dog on February 25, 2021, 11:45:45 pm ---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".
--- End quote ---
@Sled Dog
Glad to hear all the suffering lead to a positive result.
I am sincerely hoping that if you get sick again you choose another hospital?
Sled Dog:
--- Quote from: sneakypete on February 25, 2021, 11:53:04 pm ---@Sled Dog
Glad to hear all the suffering lead to a positive result.
I am sincerely hoping that if you get sick again you choose another hospital?
--- End quote ---
Actually, that's one of the best hospitals in the area. Both my kids were born there, even.
Sometimes shit happens and this wasn't an intentional "let's mess with him" incident.
The reality is that in the aftermath of the surgery I feel better now than I have in a long time. I was overweight and now I'm not.
The insurance covered all but the 10K co-pay...so they paid some 200k in bills.
My questions are going to be for when I retire...as an honorably discharged Navy veteran, would the VA cover my routine maintenance? Especially the pills I take because of the re-piping they did to me? We'll see.
I read some of this this thread and you sound like you've been through hell, and that's just not right.
sneakypete:
--- Quote from: Sled Dog on February 26, 2021, 12:01:38 am ---Actually, that's one of the best hospitals in the area. Both my kids were born there, even.
Sometimes shit happens and this wasn't an intentional "let's mess with him" incident.
The reality is that in the aftermath of the surgery I feel better now than I have in a long time. I was overweight and now I'm not.
The insurance covered all but the 10K co-pay...so they paid some 200k in bills.
My questions are going to be for when I retire...as an honorably discharged Navy veteran, would the VA cover my routine maintenance? Especially the pills I take because of the re-piping they did to me? We'll see.
I read some of this this thread and you sound like you've been through hell, and that's just not right.
--- End quote ---
@Sled Dog
Don't count on it. I am a 100 percent service-connected disabled VN vet,and I have trouble getting the VA to pay for my hospital and ER bills. I even live over 50 miles away from the closest VA hospital and a trip there would involved crossing a long bridge tunnel that doesn't allow ambulances,which means I would have to hire a boat or a helicopter to get to it,and the freaking VA is still refusing to pay my local Hospital ER and other bills by telling me I should have gone to the VA hospital for treatment.
And one of those ER trips was for flesh-eating bacteria and ended up with my receiving emergency surgery and being in intensive care for 2 weeks. The surgeon later told me if I had gotten there a half-hour later I would have died,and there would have been nothing he could have done to save me.
My choice was to go to the local hospital,a 35 minute drive,or to the VA hospital,a 1 hour plus drive,and they wouldn't even have been able to do the surgery. In cases like mine,they would have just transferred me to a local hospital up there,wasting more time and insuring I would have died.
If you have read my posts,you have read about all the trouble I have had with an infected leg the last 6 months or so,and today is the FIRST time I was able to go to a local hospital for treatment with the VA setting up the appointment and agreeing to pay the bills. I have paid hundreds of dollars out of pocket to a local doc that recently opened shop here,and owe thousands of dollars at the same hospital and to doctors there for previous leg treatments,and the VA still hasn't paid a dime because I didn't get approval before I received the treatment.
Try to buy geezer insurance by joining some group like AARP before you retire. You will still have to pay out of pocket,but they will cover most of it.
Victoria33:
@sleddog
@sneaky pete
I have Medicare and through AARP, UnitedHealthCare, Plan "J", the best plan they have. I pay nothing to any doctor. I have Blue Cross for medicines and I take a bunch of them. I pay a lot but if I did not have Blue Cross, I could not buy the medicines - some of them are over $1,000 with no insurance.
When I got insurance to go with Medicare, I looked for a plan that would not go up the older I got. That is why I have the UnitedHealthCare, Plan "J" from AARP. They will not raise the cost of the insurance as I get older. What I pay now is it.
sneakypete:
Sounds like you made some good choices.
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