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9 days and counting, ?? from my wife
Boooooooo whoooooooo. unreal, my much anticipated surgery is scheduled for Halloweeeeeeen, and that’s fine with me. had my ekg, gave up a pint of red stuff, more blood work and then it’s on to tucson next monday. bone scan to do, and all pre-op register details. any last min. advice for best experience/result while in hospital and week afterward? i’ve never been able to use hydrocodine for pain what’s a good alternative? Trick or treat – we’ll find out!
MarcusWife of Marcus here, Peggy. Our daughter, a recent grad of UCSB, moved home to help us and I’m sure she’ll be good (and entertaining!) company in Tucson. Before surgery, we’re off to visit friends at the Grand Canyon where poker buddies will draw pumpkins to be “carved” on Marcus’s belly.
I’ve been reading this site and learning what to take (toiletries, a man shawl, ipod) and what not to take (robe and lounging pants that are too tight), but I still have a few questions. What kind of protection for the mattress will we need for the first few weeks? When we leave Tucson we plan to drive to Flagstaff for a short stay before heading home. Any suggetions re: the ride home? We’ll be in BABBs – Marcus’s Big Ass Billy Bob truck and he’s thinking he can lay down in the back seat. Suggetions welcome.
thanks for being out there for so many – Peggy -
29 Replies
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Peggy,
Would this not be a choice for you?
Hospital: http://www.azcc.arizona.edu/
Dr.: http://www.azcc.arizona.edu/fap/results.asp
This Dr. might not be the guy, but I bet he can refer you to someone who is….
My husband is seeking treatment at a Comprehensive Cancer Center, we are pleased with the attention he gets, and that there is a protocol that is followed, but they also are willing to modify certain things to suit the patient. We are not a number at Wake Forest, they know us by name and greet us whenever we arrive. I cannot say whether the link I sent you would have similar protocal, but is is worth a phone call to see what they say about Marcus.
Karen
Caregiver for my Wonderful Husband Angelo, who has Metastatic Bladder Cancer.Life isn’t about how to survive the storm, but how to dance in the rain.
Hi Momof4 – I forgot to tell you Marcus was at Tucson Medical Center (TMC). We will be sending all his information to the University of Iowa (Dr. Williams) for a second opinion. Marcus trusts him which is most important…I do too. We’re up having coffee with our friends. EDAG and OPT. Every Day is A Gift and Only Positive Thoughts – words to live by today.
Peggythe only NCI center in Arizona http://www.azcc.arizona.edu/ has but one physician in the field and his primary interest is prostate cancer..Dr. Frederick Ahmann..
The NCCN has noone in Arizona. I would not chase down anymore physicians in Tucson…I would head to a MAJOR Cancer facility that deals with BLADDER cancer..i think MD Anderson is the closest but maybe not…i mention USC/Norris and Dr. Stein because he does about 90 of these a year and is a leading researcher and a specialist in the field. http://www.usc.edu/schools/medicine/departments/urology/index.html…Here is MD Andersons personnel http://www.mdanderson.org/departments/bladderspore/dIndex.cfm?pn=CB17D2D1-8B38-11D5-813100508B603A14
Pat
Peggy, were you at the Comprehensive Cancer Center in Tucson?
Caregiver for my Wonderful Husband Angelo, who has Metastatic Bladder Cancer.Life isn’t about how to survive the storm, but how to dance in the rain.
This disease is bad enough on its own without the incompetence that is in the medical field.
Get him somewhere good and get him there fast. There are even pilots who will fly cancer patients and spouses for free. Don’t wait another day. Get his records and go. Don’t even wait for an appointment. If he just had surgery, he can be re-admitted to any hospital anywhere….Find the Dr. you want and go to that hospital, get admitted, and work out the rest there…
Caregiver for my Wonderful Husband Angelo, who has Metastatic Bladder Cancer.Life isn’t about how to survive the storm, but how to dance in the rain.
I don’t know Peggy…personally i’d get on the first plane to MD Anderson with all your records…and all those records are yours…request the discharge summary from the hospital and all the pathology reports…they’re yours…they’re on the computer.See if they can get you in asap. Maybe they can rectify this. If MD Anderson won’t get you in..call John Stein at USC/Norris……call somebody who is competent. This just should not have happened.. i’m so so sorry……..Pat
I would love for you to post the Dr.’s name to be sure that no one goes to him that reads about him first!
I can’t beleive that surgery was even attempted when they already saw that it spread!! That is a HUGE mistake! I am relatively new to this but from all I have read if the cancer is Metastatic, surgery is no longer an option???Am I wrong? If he is too busy to talk I suggest requesting every medical record from him and the hospital, and holding on to it. You may want to persue this at a later date…Malpractice….Malpractice…Malpractice….
Caregiver for my Wonderful Husband Angelo, who has Metastatic Bladder Cancer.Life isn’t about how to survive the storm, but how to dance in the rain.
Peggy here – I’ll try to stick to the facts. The following is a timeline of events for Marcus’s saga.
***late May – what was thought to be pain from a kidney stone turned out to be bladder cancer. Turp unable to remove it all so bladder removal recommended. Bone scan ok and CT looked good except for a dark spot which they said was probably scaring. Tucson couldn’t get him in to even consult until end of June
***June – drove to U of Iowa from Utah because the head of urology said he’d see us asap (a friend set us up). During a physical exam after consultation he said he could feel the cancer outside the bladder. He ordered a MRI with contrast (coil) which showed nothing of great concern when they did the preliminary reading immediately after the test. The next morning we learned that was false hope and that the cancer had spread to the pelvic area and the nodes were enhanced. chemo recommended
***June chemo began
***end of August, chemo over,
***Sept 6th tucson doctor consultation, CT ordered
***Sept, i think a week later, CT done and (apparently) nothing of concern
***Oct 9 another appointment in Tucson – I called and asked if they could schedule surgery before the appointment but they said no – another consultation had to occur before he would schedule. I was frustrated and upset.
***Mid Oct. Marcus feeling pain. I called doc in tucson and requested the test that had been done in Iowa to be able to compare apples to apples but was told we’d have to have another appointment just to request the test. After several calls was told no test would be ordered.
***Oct. – week before surgery, Marcus called doc with a question but call was never returned.
***Halloween disaster. He said they worked for over 3 hours but couldn’t take anything because it was too dangerous. they did the diversion. When I told the doctor I didn’t understand why he wouldn’t order the test, he pretty much dismissed me. We are pretty much done with him…..Next – we’ll be in Flagstaff for PET and CT but won’t need another bone scan since he had one the day before surgery.
So, that’s the story. I try not to be angry, but it creeps in. Marcus has always been a remarkable man with much physical and inner strength. I am sick that I didn’t insist (more) strongly about the test. I will voice my concerns again – the doctor is simply too busy to take care of his patients.
Feedback and suggestions welcome.
Peggy,
I really wasn’t going to ask the “why did they open him up, and then find the spread question”, but the more I think about it I think we should discuss this more here. Maybe not for Marcus’ sake, but to make sure others can get all testing done PRIOR to surgery, as to avoid problems like this. Who screwed up? He should have had the bone, and CT Scans prior to surgery! I cannot believe they put him through that. It is bad enough having to recover from surgery, and the chance of infection etc, etc, etc…But to now deal with waiting a 6 weeks (is is six weeks) before the other treatments can be given! He needs to get his strength back to go through this next round, CHemo & Rad. are tough exhausting roads! They really added time, and weakness to that unnecessarily. Have you talked with the Dr.’s? What was their explanation? Where did it spread to? I do understand that a diagnosis is a diagnosis, but that just seems like a maiming surgery with his prognosis. Is there anything you could recommend that others do to avoid a situation like this from happening again? I am so mad for you. I hope you get some answers that make sense…
Karen
Caregiver for my Wonderful Husband Angelo, who has Metastatic Bladder Cancer.Life isn’t about how to survive the storm, but how to dance in the rain.
Peggy i’m so sorry…what did they do…open him up and then close him back up again?
I just don’t understand with all the prior scans they didn’t know this? Maybe Wendy can shed some light. Pat
Ok i just read your post on another site and you state he was given an Indiana Pouch but they left the diseased bladder in tact?……Now i’m really confused..
Hi Marcus,
There is a ‘survival guide’ on what to expect while in the hospital and post-op for Indiana pouch-ers. It was written by a woman, but I bet there are still useful tips for men as well, have a look:
http://blcwebcafe.org/hospitalsurvivalguide.asp
There are a few other pages that might be helfpul on the main site, if you haven’t been over there yet.I wish you a cosy ride…be careful because seat belts are a drag post-op. You should have the hang of your new plumbing by then, maybe be prepared for the occasional leak if you drive over bumps.
Take care,
Wendy
Hello caring folks at webcafe. this is Peggy, Marcus’s wife – I posted on another part of this site but thought I’d give an update here as well. Marcus had surgery on Halloween day in Tucson. Unfortunately they were unable to take his bladder and prostrate because the cancer has spread. We’ll be in Tucson for another 6 days then will head for Flagstaff for CT and PET to restage and prepare for radiation with more chemo to hopefully buy a year or more. Not what we bargained for… Every Day is A Gift (EDAG) Peggy
Marcus,
I had a 5 hour drive from my hospital (Johns Hopkins, Baltimore) to the Poconos in PA. after my surgery. I stayed one night in Baltimore after discharged from the hospital just in case I had problems flushing my neobladder. If you get a neobladder you will have to flush your catheter I think(it’s been 18 months since my surgery) every 4 hours and as needed. Actually, we borrowed my in-law’s car so it would be easy for me to get in and out of the car. We had a Pathfinder and van which wasn’t the best thing to get in and out of, let alone the rough ride. I had my husband driving with my mother-in-law to help me flush my catheter. I sat on a pillow and put a soft plush Teddy Bear inbetween the seatbelt and me. I was not in a lot of pain but I needed to flush a lot. I think the ride jared a lot of mucus loose. We stopped every 2 hours and let me walk a little so I wouldn’t get blood clots. I also wore the Teds stockings for about 4 weeks after surgery to prevent blood clots.
Maybe you can just take extra strength Tylenol. That’s all I took when I got home because I had problems with constipation and hydrocodiene will constipate you. DO NOT EAT STEAK before your surgery. I ate one two nights before surgery and they say it is one of the hardest things to digest. I had real issues with my bowels after surgery. Hopefully, this info helped you out a little. I am 18 mths. post-op with a neobladder and my life is pretty much back to normal. I did have chemo before which I would recommend if the Dr. suggest it. I don’t know your story so I just thought I would throw that in. Good Luck and just remember life does get back to normal.
Dixie
Marcus I could not imagine a 7 hr ride after this surgery. I only had to drive about 45 mins and I swear I could not wait to get home. I mean if you have someone that could drive you in one trip great and maybe stop and take a break. But even with this it isn’t like you will want to get out of the truck and strecth your legs and take a walk because walking will still be painful. I guess I was lucky I lived closer to a great hospital. Well whatever you decide please be careful and have a safe one. Joe ;)
I don’t know Marcus…the pumpkin on the belly might steal away their thunder as they’re going to paint you with orange antiseptic stuff anyway and then do some carving of their own! The week before my surgery i ate pretty good…all the good stuff…lobster, steaks, hot fudge sundaes, ( they had already warned me i was going to lose about 20 lbs)…my surgery was at 6:00 a.m. so no big meal the night before but i think i lost the 20lbs with the GoLytely that evening. Really they should have named that stuff “Keep Going” or “Forget about Sleeping”…
Have a Happy and successful Halloween! PatSign In to reply.
