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Old 09-14-2011, 07:19 AM   #261
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Wow, Jo. Just so much happening and going on. I do hope that things become clearer for her doctors and then things can go smoothly from there.

I want to make a suggestion to you. I don't know where you live in Florida or I would google it myself, but please consider her going to an Integrative Cancer Center in Florida for her continued oncology needs.

I truly believe in the approach that considers nutrition (and other things, exercise, meditation) as an important part of cancer treatment. They have had unbelievable results in shrinking tumor size and extending lifespans. She may not want to do some of the stuff (exercise...which can be as simple as an ill person moving their arms, or meditation, but maybe she would consider the food).

Additionally, and REALLY important, is that they base their timing of chemo treatments (including that pump we have talked about) around the person's circadian rhythem.

(and yes, this is what that book I mentioned to you is about...integrative cancer treatment).

Take care.
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Old 09-15-2011, 06:22 AM   #262
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Default The twists and turns are making me dizzy...

Soooo....everything changed, yet again, yesterday...

My mother is being released from the hospital today, which I completely and totally disagree with, but the hospital and insurance company refuse to listen. She will be going to a friend until she can come down here, or be readmitted to the hospital for another procedure....depending on some test results.

Meanwhile, she cannot eat any solid food whatsoever....up to and including broth or jello. She is on IVs around the clock....12 hours of fluids, 12 hours of TPN....so technically she doesn't need to eat or drink....but it still freaks me out.

Luckily, she is going to a retired couple, good friends (and thank goodness she actually made some friends in the last few years, because they've saved her life....literally). The husband has experience with the TPN because the wife is a severe anorexic, and has been on and off of it periodically. So, mom is being released to him....with him as her caretaker for the time being. A visiting nurse will also come to the house each day to check on her.

Here's their reasoning:
They had put her on Avastin. Evidently, this is a chemo drug for metastatic colon cancer, but has some pretty scary side effects.....one of which is an increased risk of GI perforations and bleed outs. So....they can't do ANY kind of a procedure until it clears her system in at least 28 days. They can't do a biopsy, a surgery, not even a tube inside to see what's going on. We are literally just waiting....and they "don't see a need" for her to wait in the hospital for a month.

I'm furious. Why in the hell would they give that drug, with those side effects , to a 50 year Crohn's patient....when GI perforations and bleed outs is what KILLS most Crohn's patients. That's exactly what killed my grandmother at the age of 72....her colon perforated and she bled out on her own kitchen floor.

Holy shit. I know they need strong drugs. I know her cancer is being tough. But THAT one? Christ.

Meanwhile, my paranoia about digestive tract health and fear of processed crap and the importance of fruit and veggies is going through the roof as a result. My poor son.....luckily he likes fruit and veggies...cuz he's up to about 9 servings a day.
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Old 09-15-2011, 06:53 AM   #263
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Transporting Jo to a Zen garden nearby.






This cancer stuff is bad, but the crazies associated with it are worse. Ya never know from day to day, wha t is around the corner...so, Breathe deep.
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Old 09-15-2011, 04:06 PM   #264
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Tomorrow is my last chemo treatment! So glad to have this part of it over.
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Old 09-15-2011, 04:16 PM   #265
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Thumbs up Great job!

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Originally Posted by Debby View Post
Tomorrow is my last chemo treatment! So glad to have this part of it over.
Woo Hoo! If you lived up the block we could go out to celebrate!

Congratulations on making it through!

That is no small feat! Kudos to you!!!!

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Old 09-15-2011, 04:42 PM   #266
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Jo -

Before you drive your kid nuts with the fruits and veggies, buy that book I suggested to you (heh). It will tell you exactly what fruits/veggies to feed him to keep him healthy. That book is the way EVERYONE should eat, not just those fighting cancer/people who don't want a recurrence.

Anyway.....

The constant changing tides must be making you crazy. :-(

All I can say about the Avastin is that they are trying to extend her life. It is the newest drug out there and seems to be able to give people a bit more time. There really isn't anything else that works to the same degree that one does for colon cancer.

Hang in there Jo, and keep posting.

P.S. Do you think if you took a few days off to fly up there to see her that you would feel better?
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Old 09-15-2011, 05:59 PM   #267
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Yeah, for hanging in there Debby
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Old 09-15-2011, 06:14 PM   #268
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Default Progressive's Dirt Brigade Adventurers for the Cure

I just got home from a motorcycle ride up in Alaska, the Yukon and the Arctic Circle to raise money for the Susan G. Komen foundation. 16 people from around the country were brought together to do this ride, sponsored by Progressive Insurance. You can read our stories at:
http://http://womensmotorcyclistfoundation.org/blog/
Mine is written under my Biker name: Trapper

We will be accepting donations until December. I know times are hard, but if you can, please donate. So far we have raised about $35,000 and would love to hit 40K. And if you can't, I hope you enjoy reading about our adventure anyway.

We paid our own gas, food and lodgings to enable all money raised, every penny, to go directly to the Susan G. Komen foundation.

If you are able to donate, please click on this link:http://http://www.info-komen.org/sit...0&pxfid=175589
Let's rid this world of cancer!!
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Old 09-16-2011, 10:58 AM   #269
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Jo -

Before you drive your kid nuts with the fruits and veggies, buy that book I suggested to you (heh). It will tell you exactly what fruits/veggies to feed him to keep him healthy. That book is the way EVERYONE should eat, not just those fighting cancer/people who don't want a recurrence.

Anyway.....

The constant changing tides must be making you crazy. :-(

All I can say about the Avastin is that they are trying to extend her life. It is the newest drug out there and seems to be able to give people a bit more time. There really isn't anything else that works to the same degree that one does for colon cancer.

Hang in there Jo, and keep posting.

P.S. Do you think if you took a few days off to fly up there to see her that you would feel better?
I finally got the book ordered ....thank you for the nudge and reminder. My brain is mush these days.

So.....the next U-turn....Mom lasted one night out of the hospital and is back in today, following massive vomiting, getting tangled in lines, disoriented, panicking, and her caregivers unable to switch things up properly.

Nightmare.

They are checking back into the hospital as we speak. My sister is getting harassed by Mom's friends to basically toss her life in the air and go move up there to care for Mom (which wouldn't work and won't happen), and now I'm questioning how well she'd do down here given what just happened.

The care coordinator is talking to the doctors, and she may end up in either a rehab care type setting or a sub acute setting (thanks Tommi....I actually knew what they were talking about!)

We'll know more later...in the meantime, I'm back on conference calls, dentist appointment this afternoon, and debating about whether I should just say hell with it and fly out. I can't afford it if she's going to be coming down here soon....but if she isn't, then I feel like I need to figure out a way to get up there with my son.

Ugh.
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Old 09-16-2011, 11:16 AM   #270
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Tomorrow is my last chemo treatment! So glad to have this part of it over.
WOHOO, Debby!! Doing a little happy dance for you! Right before I left for my conference/vacation I went to see our chemo buddy, Becky, on her last day. It was so bitter sweet because everyone got so close as friends yet we are all scared to end up back in there again with a reocurrence. It's so nice to have the support system and know that we all have each other's backs.

September 24th is our big Teal Tea event for ovarian/uterine cancer survivors and their loved ones. So we will all get to have a little reunion celebration and spend time together outside of the clinic!
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Old 09-16-2011, 11:17 AM   #271
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I finally got the book ordered ....thank you for the nudge and reminder. My brain is mush these days.

So.....the next U-turn....Mom lasted one night out of the hospital and is back in today, following massive vomiting, getting tangled in lines, disoriented, panicking, and her caregivers unable to switch things up properly.

Nightmare.

They are checking back into the hospital as we speak. My sister is getting harassed by Mom's friends to basically toss her life in the air and go move up there to care for Mom (which wouldn't work and won't happen), and now I'm questioning how well she'd do down here given what just happened.

The care coordinator is talking to the doctors, and she may end up in either a rehab care type setting or a sub acute setting (thanks Tommi....I actually knew what they were talking about!)

We'll know more later...in the meantime, I'm back on conference calls, dentist appointment this afternoon, and debating about whether I should just say hell with it and fly out. I can't afford it if she's going to be coming down here soon....but if she isn't, then I feel like I need to figure out a way to get up there with my son.

Ugh.
{{{{{{{Jo}}}}}}}}
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Old 09-16-2011, 08:07 PM   #272
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I rang the bell today! I even sang 'ring my bell'. Surrounded by besties and came home to a houseful of friends. I am blessed.
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Old 09-16-2011, 08:10 PM   #273
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Wishing everyone a magical weekend.

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Old 09-16-2011, 08:54 PM   #274
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Old 09-16-2011, 08:55 PM   #275
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I rang the bell today! I even sang 'ring my bell'. Surrounded by besties and came home to a houseful of friends. I am blessed.
Woo Hoo! Awesome!
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Old 09-16-2011, 09:02 PM   #276
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Old 09-16-2011, 09:07 PM   #277
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I finally got the book ordered ....thank you for the nudge and reminder. My brain is mush these days.

So.....the next U-turn....Mom lasted one night out of the hospital and is back in today, following massive vomiting, getting tangled in lines, disoriented, panicking, and her caregivers unable to switch things up properly.

Nightmare.

They are checking back into the hospital as we speak. My sister is getting harassed by Mom's friends to basically toss her life in the air and go move up there to care for Mom (which wouldn't work and won't happen), and now I'm questioning how well she'd do down here given what just happened.

The care coordinator is talking to the doctors, and she may end up in either a rehab care type setting or a sub acute setting (thanks Tommi....I actually knew what they were talking about!)

We'll know more later...in the meantime, I'm back on conference calls, dentist appointment this afternoon, and debating about whether I should just say hell with it and fly out. I can't afford it if she's going to be coming down here soon....but if she isn't, then I feel like I need to figure out a way to get up there with my son.

Ugh.
Man, sorry Jo.

I can't help but wonder if you wouldn't feel better if you went up there, saw her with your own two eyes, and then picked out the rehab place yourself. If she is that ill having to go back into the hospital, I really wonder if it makes sense to drag the poor woman down to your place. Ya know? Would she be even medically safe on the plane? Would it be too much for her? I guess she can answer those questions, though. I dunno. Just thoughts.
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Old 09-17-2011, 07:43 AM   #278
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Man, sorry Jo.

I can't help but wonder if you wouldn't feel better if you went up there, saw her with your own two eyes, and then picked out the rehab place yourself. If she is that ill having to go back into the hospital, I really wonder if it makes sense to drag the poor woman down to your place. Ya know? Would she be even medically safe on the plane? Would it be too much for her? I guess she can answer those questions, though. I dunno. Just thoughts.
Hi Dapper,

I spent all yesterday evening and too much of last night sitting with those same thoughts, and they're on my list for both her and the doctor. I know part of her would like to be here...but I don't want to wipe her out getting her here and then find out she can't stay at home anyway.

My sister is gone....was on a flight at 6 a.m., after blowing up my mother's car (driving an old car like an idiot and blew the head gasket) and starting a huge fight among the circle of friends that has been caring for mom so well....and then dragging mom into it to resolve it. Insanity.

I need to have a long chat with the oncologist and the care coordinator, and then with mom. Rooster and I may be on a plane heading that way soon after all.

In happier news.....Congratulations Debby!!!

I'll bet that was a wonderful feeling....and a huge milestone reached. Bravo!
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Old 09-17-2011, 08:44 AM   #279
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Hi Dapper,

I spent all yesterday evening and too much of last night sitting with those same thoughts, and they're on my list for both her and the doctor. I know part of her would like to be here...but I don't want to wipe her out getting her here and then find out she can't stay at home anyway.

My sister is gone....was on a flight at 6 a.m., after blowing up my mother's car (driving an old car like an idiot and blew the head gasket) and starting a huge fight among the circle of friends that has been caring for mom so well....and then dragging mom into it to resolve it. Insanity.

I need to have a long chat with the oncologist and the care coordinator, and then with mom. Rooster and I may be on a plane heading that way soon after all.

In happier news.....Congratulations Debby!!!

I'll bet that was a wonderful feeling....and a huge milestone reached. Bravo!
You can find so much more out in person, and , they can see a rational family member. I know this is tough to deal with, but there are some hills ahead.

Has she filled out a living will, Advance Directives effective in her state, and clear as to her wishes if she becomes too ill to make medical decisions. That is something I learned is vitally important when a friend of mine needed it in 24 hours, and did not have it done.


Expedia, Travelocity, Orbitz, . Don't know how long the drive would be, versus airfare X2, but it is an option.
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Old 09-19-2011, 07:05 AM   #280
JustJo
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You can find so much more out in person, and , they can see a rational family member. I know this is tough to deal with, but there are some hills ahead.

Has she filled out a living will, Advance Directives effective in her state, and clear as to her wishes if she becomes too ill to make medical decisions. That is something I learned is vitally important when a friend of mine needed it in 24 hours, and did not have it done.


Expedia, Travelocity, Orbitz, . Don't know how long the drive would be, versus airfare X2, but it is an option.
Flights are booked....we're on a plane Wednesday 9/28...going up for 4 days so my son will only miss one day of school.

And, thank you Tommi, I have a list of things to go over with her...those items being on top.

When I spoke to her yesterday she sounded exhausted, and also clearly had no memory of talking to me just the day before and relaying the story of how she ended up back in the hospital.

Her version is very different from my sister's...not surprisingly...and maintains that she was fine and it was everyone else who freaked out.

I just need to get up there and see with my own eyes, talk to the doctor face to face, and figure out what the heck is going on.

In the meantime, the rehab/sub acute discussion is over....the doctor has decided that they're just keeping her in the hospital until they know what's going on and the Avastin clears her system. She feels better about that, and honestly so do I. She clearly feels comfortable and cared for there....and that's probably the most important thing at this point.

I still want to kick my sister's ass though.
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