well well well. Whatta day whatta day.

So i had a follow up appt. with Fazio on thursday. I live in chicago, so i booked a flight out there.

Now, i told gina i'd be flying in at 10a. and flying out at 4:50p. My appt. was at 11:15am. Gina thought that'd be fine.

Our flight is on time, we're running on time, I'm on the bus from the airport, and decide to call the office and let em know we're on our way (just in case). The girl on the phone says "oh, Fazio isn't here yet, take your time"
Well, we went straight there anyway.

We check in, and after waiting for bout 15 min. Gina calls us back to the room. We do the mandatory answering questions, what meds are you on, are you in any pain, blah blah blah. Then she says, well, you should go and intubate, and irrigate well, get as much as you can out, so that when he gets here he can do the scope.
so i get my stuff out to do it in the room. And she leaves. My mom and i are in there for bout 20 min or so, and i'm pretty much done, so i take the pan they gave me, and i go out to the hallway to find a bathroom (figured it was cleaner to flush it down a toilet than their sink) and Fazio's in the hallway on the phone. So i hurry up and flush it thinking that he was making his way to my room next.

No, about 10 min. after that, Gina comes in like "so have you eaten yet?" I think she's asking me this b/c of something to do with scoping or something. I say yes. she says "um...you wanna go eat again?" huh??
She says "well, Dr. Fazio has been called into an emergency surgery. Why don't you go have a bite to eat, come back in about an hour"

uuuhhhh...okay. We go eat at Au Bon Pain. take our sweet little time. Go back, it's now 2:40. He's still not back. I tell em i gotta flight to catch. and i have to probably leave by 3:15ish to get there in time. My mom starts kinda freakin out.
In the meantime they scramble around to find a doc who CAN scope me (which begins to make me mad b/c damnit, i came to see Fazio, not another doc who may be a very skilled, very competent doc, but doesn't do kpouches.)
They get a Dr. Vogel (sp?) to do the scope, but i still have to wait for him.
So my mom gets on the phone with Southwest trying to get our flight changed. She pulls the sob story angle (we flew in to see this specialist, and he's in emergency surgery, so now we're late. blah blah blah)
Southwest is nice enough to let us push our flight back for only $10 a piece.
So now my mom can breathe easier. There's a guy in the waiting room being all puffy telling my mom "is Fazio holding you up too?!?" my mom replies "well, he saved my daughter's life. so i can wait"
Dr. Vogel comes to do the scope, and jams the hell outta my stoma (i literally yelled "yeeooowwch!" he pulls it out, lubes it more and tries again. a bit slower this time.
My pouch looks good on the inside, all nice healthy pink tissue (besides the 'lake of ****' as my mom called it, since i needed to flush again) there was a spot that looked a bit like it was bleeding, and dr. vogel said that was from the scope when he jammed it in. and apologized.
he doubled back on the scope so i could see the valve, and commented on how very long the valve was.
And the inside of the pouch got huge from what i remember. it really did stretch out. looked very 'cavernous' inside. actually seemed like there were two 'compartments (are there two areas of the pouch?)
snapped one quick (dark) pick of the valve for fazio to see. and by then i was dying he pumped me so full of air and water)
then he was done, he typed up some notes, let me intubate again cuz i was dying from all the rumbling and bubbling in my abdomen.
then we waited some more, and FINALLY Fazio came in. (my mom exclaims "THE MAAAAAN!" hehehe)
I had a list of questions all typed out ready for him. He asked how the scope went, basically told me (again) to throw all preconceptions out the window til chemo is over. and said bascially "whatever you're doing to get it to work, keep doing."
(b/c i told him that the bigger Weber-judd catheter was going in, but the marlen one wasnt, and wouldn't)
So, it wasn't a very satisfying appt. for me.
I can get this weber judd cath in but i didn't feel like i was emptying all the way b/c within a matter of 15 min. i feel gas pressures again, and have been having to empty every 2 hours (and i mean...i'm stretching it at that...really holding out even though i have pain and pressure)
He didn't give me any insight as to why the cath wouldn't go in (hell, he didn't even do the scope so how would he know). he didn't give me any answers or solutions to any of the problems i'm having.
I mean, i guess it's great that i got to see him. He didn't really look at my stoma, or scope. or really exam me at all.
he said to me "look, we don't have anyone like you, you are unique in the fact that you are a young woman, who's had radiation, is on long term chemo, and has a kpouch. As far as I know you're the only one with those conditions. I can tell you about older women on chemo with regular ileostomies, but that's all I can compare it with."

So alas...here I am. Still with no answers.
Guess i'll continue to struggle through it.
Just thought i'd update you all.
(oh yea, and we left the hospital, hopped a train and made it in just enough time for our next flight)

You really did have a trying day! I'm not sure what to say...
I'm so sorry you didn't get answers to those questions. But he was honest with you about having a unique situation. I sure hate to think that you are "struggling through". I do hope that this is temporary and once you are done with treatments you will see improvement.
And as agggravating as it was for you to have him be called out for an emergency ( and I take that same risk in 10 days for my appt and the stress of catching a plane)..should I ever need him( or any dr) in an emergency I sure want the best man (or woman) for the job.
Is there anything you can take for the gas? Maybe if there was you would be able to go longer between intubatations. The Marlen cath is actually the bigger one in diameter but shorter in length. Use the one that is working for you.

I think our flight from Cleveland has a change of planes on Chicago.

I'm sorry you didn't get an answer but it sounds like you are breaking new ground, Chemo and a Kock Pouch. If you have trouble, leave the most comfortable catheter in place until the irritation is healed. The gas, try gas-x, or intubate more often. I'm sorry I don't have any more help to give you...but I would like to give you a cyber "Hug". Hang in there, your Chemo should be over soon.

Sorry you had such a tough time there. Sure sounds like your not a happy camper.

Hang in there, I had my own trials during chemo ~ both with the Temp Ileo and then with a fully functioning J Pouch.

Things cleared up once I was a bit away from Chemo. Chemo does whacky things to you and your body. Trust me!

Hang in there. I know it sounds hard and difficult...........and almost unbearable......just hang in there. You almost there.

Sorry for your visit with the Doc. Hopefully things will get better after chemo.

Chuckus - how long after chemo until things get back to "normal"? I have completed 8 of my 12 treatments with a temp ileo. Wondering how soon I will feel be ready for takedown?

Jeannie

Keep us posted Becca.....Chuckus, it's so good you come here to give your experiences. Thank you so much!!!!!

Vent away Becca...we are here to support and listen...."hugs". You are strong, you will get through this....hang tough!!!!!! Vent, Vent, Vent along with that Chew, Chew, Chew!!!!

hehehheeh! i am chew chew chewing! i was always kinda a slow eater, so i'm pretty used to being the last at the dinner table.

Anywho, i'm still a bit peeved about my cleveland visit. i really wouldhave liked to have gotten some real answers.

BBUUUUTTT...my very LAST treatment starts on tuesday. not looking forward to it at all, but i am looking forward to the fact that after next weekend my body will be working on getting the chemo out, and getting back to normal.

i am struggling through it. i mean, i'm not in pain all day. for the most part i'm fine. but it does make it hard to live a normal life. hard to get to work, hard to stay at work when i feel like i have to go into the bathroom for 20 min. every hour or so.

today i was determined to get to do my classes. i started a hula class last week. so i made sure i intubated as soon as i could before. so i made it to hula, then to my conga class for a little bit, and finally a very beginner capoeira class (got to ease myself back into it.)
So i'm tired and sore but in that good kinda way. I just want some normalcy back. and i can't wait til i'm on that road...

PLUS, my mom decided that since i was diagnosed in march of '06...my mom and i were on our first trip to europe, and she blew her knee out while in amsterdam and we had to come home early (only was there for like three or four days). and i came home to finding out i had cancer (literally the day after i got back).
And since march is coming up again, and i'll be ending my treatment just before it, it'll be a full year.
We thought, what better way to 'bookend' this whole ordeal than to go BACK to europe and finish off the trip we started a year ago....
(this time we're gonna wait til april since it'll be warmer then.) But i'm excited to think i get to go back.
I think we're booking our tickets this week. So that's a nice thought to have going into this last treatment.

so that's that for me tonight. time for bed.

thanks everyone for the words of support. Hopefully soon I'll be the one giving words of support to someone else and enjoying the benefits of my kpouch to the fullest.

If there were ?s you didn't get to ask at all, email Gina!

Becca; when I had surgery Dr. Fazio's only requirement of me was to not travel abroad within one year of surgery. We wanted to visit our son in Italy but ended up waiting till April.

I was just talking about exercising ,specifically Pilates with my sis. Finally after one year I feel like I can exercise somewhat seriuosly without screwing something up. You are much younger than me and in better shape , but please be careful... Do I sound like a mom?

heheheh, yes...yes you sound like a mom!
When i was there my mom and i mentioned going to europe again, and noone raised an eyebrow or said a thing.
but i'll email her again just in case.

i also told Gina that i was attempting to get back to the martial art i was in, though not really more than just beginning stuff. and again, i just got encouragement.

trust me, i'm not doin flips...just the stuff you see in my pics:
http://www.cancer-sucks.com/rebecca/patch/smalls/bencao%20good.jpg
http://www.cancer-sucks.com/rebecca/patch/smalls/esquiva%20better.jpg
http://www.cancer-sucks.com/rebecca/patch/smalls/martelo%20good.jpg

there is alot of backbend type movements we do, i've stayed clear of those, and only did a cartwheel just to let myself know i still CAN.

i figured i was being careful since i didn't do a thing since september. i gave myself well more than the 8-12 weeks before i really did anything

i have a few other questions i didn't have with me when there that i'm going to be emailing today. i'll just keep my fingers crossed

Hey Becca,

Maybe he has changed his mind or your situation is different than mine. I too had talked with Fazio about going on vacation out of the country. He said I should wait at least a year. I mentioned that we were thinking about going to Hawaii and he said that might be acceptable, but to call him in advance so he could find someone out there that could help if I had problems. Just a heads up.

Hope everything goes well because after all you have been through, you deserve a celebratory vacation.

Mike S

so i don't get it, what would be the problem with traveling if you feel well?
is it just the risk of something going wrong with your pouch? and if so, what would go wrong.
I mean, i could understand going to like...indonesia or thailand or somewhere with questionable water, food, etc.
but hawaii??
It can't be the actual travel portion (the plane) b/c I had to fly to get to him?
I will ask, of course, but i'd better be given some good reasons for it.

I dont remember exactly his problem with Hawaii. I do remember he was very concerned with the quality of water in other countries. Though I imagine if you bought bottled waters you could probably get away with using them. I have never been to Hawaii, so dont know if that would be a concern. He may have just been concerned over the emergency situation and who could take care of it.

Mike S

When I had my Kock Pouch done back in 1978, I was told that if the valve is going to slip it will usually happen in the first year. So I don't know if this still holds true to this day, but knowing where a doctor is to deal with a Kock Pouch especially in the first year is a "very good idea". You are adjusting and so is your body as the inflammation is going down and your valve and entry way are settling from the surgery; and with you, Chemo too. So please, talk to Dr. Fazio about any vacation ideas. "Hugs"

When I saw Fazio last week he said that most complications happen in the first year and they prefer if you don't leave the country for that reason - they like to keep you close.

quote:

Keep us posted Becca.....Chuckus, it's so good you come here to give your experiences. Thank you so much!!!!!

Well, I try and lend a hand where I can. Plus me and old Cynnycal have a couple of common bonds........FAP and Cancer!

I just try and shed personal light where I can to help out!