Well...life is like a journey and advanced prostate cancer is a harrowing journey...add a 5 week journey from South Florida to Minneapolis...to South Dakota (to do a 9 day Gate1 motorcoach tour of the national parks) ending in Salt Lake City and then an overnight train trip on the California Zephyr...to spend 4 days with a friend there....
....AND THINGS COULD DEFINITELY GO WRONG.
After one of our days in Nashville in the emergency room....given antibiotics for pain in my urinary tract....we made it to Minneapolis where I thought maybe the bactrim was working...I went to bed Saturday night optimistic that I would wake up feeling better in the morning (this past Sunday). I woke up in a new and more horrible pain...could only get dribbles of pee out and it felt like giving birth to porcupines through my penis. We packed up and drove (since we were so close) to the Mayo Clinic Emergency room in Rochester.
I cannot emphasize what an amazing...like nothing I have seen...hospital experience. I can only describe my 3 days there as being "cradled in the arms of Angels".
From the emergency room Doctor and nurses and the team on urologists and surgeons that came to see me there to be admitted late that evening...I kept saying that this couldn't have happened in a better place.
They did batteries of blood test and urine tests and a cat scan...putting a catheter in me every 2 1/2 hours (because by the time I got there I could not pee a drop.)
Each time it felt so great...and each time I tried to pee on my own...gave up and the did the catheter again...always with care to hurt as little as possible.
Finally around 8 pm they determined that I needed a Foley catheter...it was so gently done I could not believe. They thought I had an abscess of infection on my prostate (beaten and abused from radiation and hifu...both over 4 years ago)
The next day they got more of my history from University of Miami Sylvester...and my urologist and awaited cultures of the blood and urine tests...deciding that the abscess was more likely necrosis and scarring...still kept testing. All the while each nurse I had was more loving and caring than the one before....they all new we were up for the State Fair...and were praying for me to make it. That said the hospital food was amazing....repeat...amazing.
On Tuesday afternoon after teams of urologist and surgeons had been coming in giving me updates for the past 3 days...they said they wanted to remove the catheter and see if I could pee. Straight away I peed a little in the toilet about 15 minutes after it was out. I got excited...but then I got up to go again and nothing.. got filled, got a quick drain catheter...filled again....then the head urologist came in and said that they recommend a Foley catheter. And they could release me ...to be followed up after giving my urinary tract time to heal...at my doctor in Ft Lauderdale.
They also said that the Foley might be a permanent fixture. That scares me to death...but we left the hospital Tuesday evening....and made it to the fair on the next day...with my urinary bag in a cooler bag by my side(see picture)
I've been working around the bag...5 miles of walking at the fair, shopping, and cooking at our Airbnb....and sleeping 8 to 9 hours each night (since I don't wake up to pee)
I'd like to say it's a piece of cake...it's not. I'm used to doing everything...and quickly and efficiently. The only thing efficient about the bag is sleep. Even then I miss being able to turn over on my side. Still going through with the 3 more weeks of the holiday....not knowing what pitfalls are around the next corner. This is definitely a journey for me, not a battle. I'm pressing onward. 😳😩☺
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greatjohn
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What an incredible story. Thanks for sharing. I have heard that Mayo is great! You proved it.
I know a foley is a pain (I had one for a couple of weeks after my prostate was removed), but it is reliable and let’s you be mobile and sleep.
What a wonderful photo and story of your visit to the fair! You are LIVING! And a great example to so many here - it’s tough, but you handle it with grace and determination. What an odyssey! Keep us posted on any more travels!
Try to enjoy the trip. My mom used to say there can not be a rainbow without the storm.......(me) but mom when will the storm end? Good luck my prostate friend. You are a force. I can see you will not let this spoil your trip.
Having attended that fair for most of my life, I know it’s a great place to people watch. So You fit right in. What else can you do but grin and bear it. Enjoy getting good sleep.
Has Mayo given any prognosis or possible treatment other then permanent foley? We have been there several times this summer and have not experienced the treatment you got. It’s more like assembly line medical care but not as efficient. I will try to keep an open mind for the rest of our appts and think of you. Hope you can do the rest of your planned trip.
I couldn't pee for 10 days after having tumors removed from my bladder. Long story short, it was excruciatingly painful not being able to empty an over-filled bladder, and getting catheterized with a freshly operated on bladder was even worse.
My recommendation for anybody having a catheter for more than about a day is to seek out a "Flip Flo" valve: locostmedicalsupply.com/bar.... I had the bag for a few days, and it sucked. When my urologist gave me a valve, then urine was stored in my bladder like normal, and when I felt the urge I just went to a toilet and opened the valve. Much more convenient! Maybe you could even switch between the valve for the day and the bag at night.
I'm sorry to hear you're having these problems on your vacation, but your attitude is admirable. Has anybody mentioned whether a TURP procedure (aka "roto rooter") is possible if the situation doesn't resolve on its own?
Best of luck, and keep that great attitude! Going to the fair with a urine bag makes you a hero in my eyes.
Thanks for sharing your story greatjohn. Brought back memories; my husband and I grew up in MN and spent 13 years living in Rochester. Back then it was a unique place to live, a small town with world class medical care. We used to say "if your doctors don't know what's wrong with you you come to Mayo Clinic - they've seen it all."
And of course we indulged in a few of those fried cheese curds at the fair!
I went to our little local fair and after about 1 1/2 hrs of hobbling around gave up and just sat down. Then the daunting trip back to the car. My feet just won't let me do much. Darned neuropothy is a pain, just not in the ass.
YOLO! who cares about the bag! my husband had a pubic cath for 10 mos. the valve is great. he had total urinary retention and now self caths 2-3 every 24 hrs but the rest is on his own! good luck !
Thank you....my dream would be some "on my own time".
On the bright side..I am sleeping so much better with it now....and can do things like drink a glass of water if I'm thirsty, Instead of just swishing some in my mouth and spitting out....RIGHT BEFORE BEDTIME.
yes, he does miss the bag for nights but not enough to put it back! you'll get there!
Hey greatjohn! I am in Mn too, my homeland..... lots of relatives of mine have been saved by the Mayo in Rochester... burns, heart attacks, broken necks, auto ejections, cancer... Thanks for the info you provided on your treatment as it reduces the fear for when I will likely go through the same. Funny photo of you at the fair; when you want to pee, you just drop the bag?
I've actually gotten a better bag to hold my bladder bag...a postman type, that has a strap that goes across my shoulder so it's much easier. No carrying. Got it at the fair when we returned on Friday. Re. Peeing....it automatically done. You just have have to keep the bag below your bladder. Sleeping I hang it on the bedside table and I sleep all night long and awake to a pretty full bag that's ready to be drained into toilet. A bright spot in this.
P.S. everyone up here is so friendly and nice.. it's the opposite of South Florida. What a great place to live if you can handle the winters.
Indeed! You are an inspiration. I admire your force of will and great attitude.
I hope the journey is a long one and you keep smiling.
I hope this Irish blessing still works when a Jewish guy says it;
May the road rise up to meet you. May the wind be always at your back. May the sun shine warm upon your face; the rains fall soft upon your fields and may God hold you in the palm of His hand.
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but not enough to put it back! you'll get there!
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