well...home from Holiday...AND, In spite of the Foley catheter and a few other set backs along the way...made it the whole 5 weeks.

[greatjohn]

Did Everything, ate everything, saw everything...across 2100 miles by car...1100 miles by Motorcoach Guided Tour with Gate1...1100 miles by Train (Scenic California Zephyr) and ended up in Sacramento for a four day visit with a friend there (and rest before the flight home to Ft. Lauderdale). I really did have fun...in spite of the hardship

Before all of this...I had decided to take a FenBen (hookworm med) holiday so it's been almost 2 months since stopping. And I took an equally long holiday from BIRM....

only to come back to my PSA is up from 3.08 to 4.83. My alkaline phosphatase levels for the first time ever went from where they have hovered at around 60 to 65 to appx 110. Undoubtedly I wasn't doing something right. I was having fun (in spite of the misery of the Foley catheter and carrying the bag with me everywhere I went)...and that is a NO NO.

I don't actually get to see my urologist (the Foley was the final thing done by the Mayo Clinic in Rochester, MN--the original one and most amazing place on earth...so it's been in me 6 weeks already....and will be for ANOTHER week. It's time to change it and do another cystoscopy. I have an appointment on Oct 1st (still a week away)....and left hoping for the best. The Mayo Clinic said it "might be permanent". But things might change inside me and I might be able to pee by myself. Hope springs eternal.

Not feeling so good about things right now...as reality (post holiday) is setting in)...but so hoping this October 1st appointment doesn't ruin my scheduled trip for the Prostate Cancer Conference in N.Y. City on Oct 5th...we're scheduled to fly out on Oct 4th.

That Said...it WAS a journey...and I made it.

...the journey continues.

gJohn

p.s. Pic is Richard and Me(and my shadow--the bag with my "bladder" in it) at Yellowstone. Soaking in the cooler weather. It was great there!

[tom67inMA]

That there is some mighty impressive "going about life" in the face of hardship. Well done! Considering the alternative would have been to not take the trip and not have fun, I think you made the right choice.

[AlanMeyer]

You're an inspiration to all of us John.

Thanks.

Alan

[j-o-h-n]

Whoa back up a minute.... If you're wearing a foley... then how did those stones turn yellow?

Welcome back and hopefully you won't have to wear that annoying bag.....

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 09/24/2019 6:18 PM DST

[Kaliber]

Dang I’m envious... great sounding trip ... good for you . I liked the bladder in a bag part yayahahaha. ( and not talk’in cheap bladder wine here ... or are we ? ) That bag is a real drag ... hope your Oct 1st appointment frees you from it. Stylish looking over the shoulder bag tho ... compliments your ensemble. Woof woof ...

[Hidden]

Yellowstone falls very beautiful . Glad you did the trip . I do understand the plight of travel with Foleys ,bags and tubes . I did it for one year from hell . I hope that you find a fix for this . Welcome back home .. Take care ..

[RalphieJr64]

Keep up the good fight John.

[Collarpurple]

So glad you had a great trip. Positive thinking in the bag will be gone🙏❤️

[greatjohn in reply to Collarpurple]

Thanks!

[Schwah]

We are all so proud that you refused to let your health issues hold you back. No regrets Brutha. That’s living.

Schwah

[Grumpyswife]

You're looking good and it will be a relief for you to get into your uro. Will be waiting to hear about the NY conference. You are a trooper!

[greatjohn in reply to Grumpyswife]

Thanks guys! HAPPY AUTUMN!

[PhilipSZacarias]

Hello GreatJohn, My compliments on completing a great sojourn despite the challenges - we humans are adaptable and resourceful. I have also been doing more travel but shorter and more frequent ones. The trips have been good for the soul. I always take the opportunity to do some hiking, the harder and longer the better - not easy but feel good/better afterwards. I have managed to stick to my two meals per day regimen and keeping the carbs low, veggies high.

Have you considered the COC protocol? A combination of metformin, statin, doxycycline and an antihelmenthic (e.g., fenbenazole, medbenazole)? I already take the first two on this list and in November will likely start trials by adding the latter two. Cheers, Phil

[greatjohn in reply to PhilipSZacarias]

I did Fenben for over 3 months...decided to take a holiday from it while on the 5 week journey...so been off for 2 months. Started back yesterday. Also taking daily Metformin and will begin doxycycline again soon.

Thanks & happy trails!

gJohn

[larry_dammit]

Keep doing that bucket list . Fight that monster 😜😜😜👍

[greatjohn in reply to larry_dammit]

Thanks big guy!

[dadzone43]

it was a journey and you made it....and it was good for your soul...and it lowered your stress. No harm in any of that. Best,

[Jackpine]

John,

Great post and trip. This disease throws us curves that are hard to take some times, but going on this trip you showed it who’s boss! Wishing you rest and improving health!!

[greatjohn in reply to Jackpine]

Thanks and to you!

[rocket09]

They don't call you great for nothing!

[Currumpaw]

gJohn,

Glad you got to see Yellowstone!

Smart idea using the bag.

Currumpaw

[greatjohn in reply to Currumpaw]

Bought it at the Minnesota State Fair. It's worked great.