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Old 01-05-2013, 08:01 PM   #31
Redwolf8812
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Originally Posted by lmc318 View Post
I was thinking that we've gotten a pretty good response here, so maybe we should start a DIS Survivors and Givers group. Kind of like DIS Dads did for all dads, this would be for anyone who has had, is battling, or is helping to fight for someone with cancer. What do you think? It would be great to get and give suggestions from and for all kinds of experienced survivors and care givers.
Sounds good. How do we do it? And can we get the words "stage 4 cancer" in there somewhere? I ask because I've seen groups for other cancers/other stages. I'd like this one to be unique. I think we battle some very different emotional and physical issues.

Penny
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"The God of all grace who called you to his eternal glory through Christ [Jesus] will himself restore, confirm, strengthen, and establish you after you have suffered a little." (1 Peter 5:10)
Penny
1972 - 1984 many visits
1993 - Yacht Club, honeymoon, October
2001 - offsite, first visit with 2 kids, May
2002 - Fort Wilderness, October
2004 - Fort Wilderness, first visit with 3 kids, October - November, Food & Wine Festival, trick-or-treating in the campground
2006 - Fort Wilderness, October - November, Food & Wine Festival, trick-or-treating in the campground
2008 - Fort Wilderness, October - November, Food & Wine Festival, Mickey's Not So Scary Halloween Party, trick-or-treating in the campground
2011 - June - Old Key West & Bay Lake Tower, first visit as DVC owners after selling camper & truck, first visit post-cancer diagnosis (stage 3)
Easter 2012 - Animal Kingdom Kidani, first visit post-stage 4 cancer diagnosis
November 2012 - Boardwalk Villas
May 2013 - Treehouse Villas
December 2013 - Saratoga Springs
6/26-6/30/14 Saratoga Springs
Reservation for The Wilderness Lodge 5/3 - 5/8/15
next - it's all in God's Hands
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Old 01-06-2013, 08:44 AM   #32
lmc318
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Quote:
Originally Posted by Redwolf8812

Sounds good. How do we do it? And can we get the words "stage 4 cancer" in there somewhere? I ask because I've seen groups for other cancers/other stages. I'd like this one to be unique. I think we battle some very different emotional and physical issues.

Penny
Well if we're going to keep it to stage 4 cancer then I think this group is good. I was thinking of expanding as I haven't seen more than a few threads about going with cancer at all. Since even stages 3 and 4 have a wide range of needs I thought we could get some new perspectives. I'll search for the other groups you refer to, though. I haven't seen much.

How are you feeling Penny?
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Old 01-06-2013, 03:40 PM   #33
Redwolf8812
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Originally Posted by lmc318 View Post
Well if we're going to keep it to stage 4 cancer then I think this group is good. I was thinking of expanding as I haven't seen more than a few threads about going with cancer at all. Since even stages 3 and 4 have a wide range of needs I thought we could get some new perspectives. I'll search for the other groups you refer to, though. I haven't seen much.
I just thought stage 4 was a little more sensitive with our own set of issues but you're probably right in expanding it to other stages. I've seen a breast cancer survivors thread somewhere here but I don't know if its members are currently going through chemo and I don't recall seeing stage 4 members on there. But I could be wrong. Whatever everyone wants to do is fine with me. I'm just so glad I've found other stage 4 cancer patients who still enjoy Disney. I may let others know about this thread - those I've met on breast cancer chat sites.



- Penny
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"The God of all grace who called you to his eternal glory through Christ [Jesus] will himself restore, confirm, strengthen, and establish you after you have suffered a little." (1 Peter 5:10)
Penny
1972 - 1984 many visits
1993 - Yacht Club, honeymoon, October
2001 - offsite, first visit with 2 kids, May
2002 - Fort Wilderness, October
2004 - Fort Wilderness, first visit with 3 kids, October - November, Food & Wine Festival, trick-or-treating in the campground
2006 - Fort Wilderness, October - November, Food & Wine Festival, trick-or-treating in the campground
2008 - Fort Wilderness, October - November, Food & Wine Festival, Mickey's Not So Scary Halloween Party, trick-or-treating in the campground
2011 - June - Old Key West & Bay Lake Tower, first visit as DVC owners after selling camper & truck, first visit post-cancer diagnosis (stage 3)
Easter 2012 - Animal Kingdom Kidani, first visit post-stage 4 cancer diagnosis
November 2012 - Boardwalk Villas
May 2013 - Treehouse Villas
December 2013 - Saratoga Springs
6/26-6/30/14 Saratoga Springs
Reservation for The Wilderness Lodge 5/3 - 5/8/15
next - it's all in God's Hands
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Old 01-06-2013, 03:44 PM   #34
Redwolf8812
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How are you feeling Penny?
Thanks for asking. Still in some pain and nausea, not surprising considering how much burning went on and how close he got to the gallbladder. Waiting on biopsy results and then scan on Feb. 6th.

Penny
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"The God of all grace who called you to his eternal glory through Christ [Jesus] will himself restore, confirm, strengthen, and establish you after you have suffered a little." (1 Peter 5:10)
Penny
1972 - 1984 many visits
1993 - Yacht Club, honeymoon, October
2001 - offsite, first visit with 2 kids, May
2002 - Fort Wilderness, October
2004 - Fort Wilderness, first visit with 3 kids, October - November, Food & Wine Festival, trick-or-treating in the campground
2006 - Fort Wilderness, October - November, Food & Wine Festival, trick-or-treating in the campground
2008 - Fort Wilderness, October - November, Food & Wine Festival, Mickey's Not So Scary Halloween Party, trick-or-treating in the campground
2011 - June - Old Key West & Bay Lake Tower, first visit as DVC owners after selling camper & truck, first visit post-cancer diagnosis (stage 3)
Easter 2012 - Animal Kingdom Kidani, first visit post-stage 4 cancer diagnosis
November 2012 - Boardwalk Villas
May 2013 - Treehouse Villas
December 2013 - Saratoga Springs
6/26-6/30/14 Saratoga Springs
Reservation for The Wilderness Lodge 5/3 - 5/8/15
next - it's all in God's Hands
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Old 01-06-2013, 10:13 PM   #35
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Hello All - I just wanted to share my experiences with you if your interested. I have stage 3c Ovarian Cancer and was initially dx in Feb 2011. I went through a horrible hysterectomy surgery and 2 subsequent hospitalizations and was treated with carbo/taxol/avastin for 6 rounds finishing in July 2011. I immediately began to plan my December 2011 Christmas trip. Unfortunately, after booking my trip, I began to suffer dreadfully from the side effects of the chemo. I had to have plugs put in my eyes due to severe dry eye syndrome, I had neuropathy in both of my feet and severe pain in my upper extremities due to the chemo. Luckily, my feet survived the trip and I had an absolute blast. I did however get a GAC card which helped with some of the waiting for rides. I went for approx 10 months and found out that my disease was recurring and alas I have restarted chemo this past September but guess what? I went to WDW again in October with a friend and what a wonderful trip it was. It was a trip of firsts as we were lucky enough to see the new MK area before it was officially opened, I went to my first party MNNSHP which was awesome and I also went to the food and wine festival so a happy girl I was. Can't wait to plan again but I'd like to be done treatment again because I am very tired and want to enjoy it not being so lethargic. I wish you all the best and I am all for going to the happiest place on earth it's def therapeutic!!
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Old 01-07-2013, 03:35 PM   #36
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Thanks for this thread Redwolfe. Lanagraves from BCO here. Looking forward to our next WDW trip in September.
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Old 01-07-2013, 03:46 PM   #37
LaurenS
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Disney World is one of my favorite vacations. Actually Disney World in October 2011 was one of the last places where I felt well. As soon as we came home, I started getting sick and I was finally diagnosed with stage IV breast cancer with mets to the vertebrae and lungs in April 2012. I'd love to go back to Disney soon, but I've blown all my vacation time on hospital stays and am blowing all of our vacation money on medical expenses and college costs for our oldest!

Last trip, we had my mother get a wheelchair due to some issues she was having with medication interactions. I just can't imagine ME having to get a wheelchair next trip, but I know I just don't have the stamina or speed for walking at Disney.

Hi Redwolf I followed you here from breastcancer.org.
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Old 01-07-2013, 06:37 PM   #38
Redwolf8812
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Hi Julie and welcome. Keep us posted on you. My mom had ovarian - I know it's no walk in the park, no matter what the stage is.

Lana & Lauren - you two are too cute!
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"The God of all grace who called you to his eternal glory through Christ [Jesus] will himself restore, confirm, strengthen, and establish you after you have suffered a little." (1 Peter 5:10)
Penny
1972 - 1984 many visits
1993 - Yacht Club, honeymoon, October
2001 - offsite, first visit with 2 kids, May
2002 - Fort Wilderness, October
2004 - Fort Wilderness, first visit with 3 kids, October - November, Food & Wine Festival, trick-or-treating in the campground
2006 - Fort Wilderness, October - November, Food & Wine Festival, trick-or-treating in the campground
2008 - Fort Wilderness, October - November, Food & Wine Festival, Mickey's Not So Scary Halloween Party, trick-or-treating in the campground
2011 - June - Old Key West & Bay Lake Tower, first visit as DVC owners after selling camper & truck, first visit post-cancer diagnosis (stage 3)
Easter 2012 - Animal Kingdom Kidani, first visit post-stage 4 cancer diagnosis
November 2012 - Boardwalk Villas
May 2013 - Treehouse Villas
December 2013 - Saratoga Springs
6/26-6/30/14 Saratoga Springs
Reservation for The Wilderness Lodge 5/3 - 5/8/15
next - it's all in God's Hands
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Old 01-12-2013, 12:03 PM   #39
MdMommy
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Thought I would share. I had my PET/CT scan earlier this week and have heard back from my doctor. Everything looks stable for now! So, I will continue with my current treatments for now. I will probably have one more scan, possibly two, before my vacation this summer...I get scans every 3-4 months. Hopefully the chemo keeps working. But for now, I am happy with the test results and can have fun planning for my summer vacation at Disney World!
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Old 01-14-2013, 07:02 AM   #40
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Hello all! I am just back from Disney. This trip was a lot of wheelchair because I was only 10 days out from a total abdominal hysterectomy. I did OK. Walked a mile or so a day. Usually at the end of the day when the kids were tired. We'd corral them into the wheelchair so we wouldn't lose them when walking in a crowd at park closing. Only did closing once and that was after Fantasmic. But the five year old was pretty beat at the end of the day and loved the ride. So I suppose some people thought I was that "miraculous" wheelchair cheater who rose from the chair as needed and was getting to the front of every line! Wish they knew what a pain it is is to be stuck in the chair and to have to deal with it everywhere.

Cancer pain was tolerable. I did have talks with two doctors while there. My uorlogist called to tell me that he believes I do not have metastatic bladder cancer - he reviewed everything and had it reviewed by others as well. He thinks perhaps breast cancer from the immunohistological staining. My primary called because she reviewed my medcation history and is concerned about the amount of Vicodin I am taking - too much acetaminophen. She isn't worried about the narcotics since she said pain control is the issue now. So I get a prescription today and will be taking MS Contin which is morphine in a pill form. It is long lasting and I will take the Vicodin only for breakthrough pain.

Going back to work this afternoon. Saving what I have left for paid time off for chemo. Sucks to not have short term disability but at least my job isn't physically strenuous and I can work from home a few days a week.

I thought of all of you when I was on vacation! Healing wishes to everyone.
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1981 to 1983 - Disneyland many times November 1987 - Fairway Villas (prior to the Disney Institute)
September 1996 - Fort Wilderness (DD and DH's first trip) October 1999 - Fort Wilderness November 2001 - Fort Wilderness November 2004 - Fort Wilderness November 2005 - Saratoga Springs December 2006 - Saratoga Springs February 2007 - All Star Sports August 2007 - Boardwalk Villas November 2007 - Saratoga Springs February 2008 - Villas at the Wilderness Lodge August 2008 - Old Key West
December 2008 - Saratoga Springs February 2009 - Beach Club Villas September 2009 (50th birthday trip) - Bay Lake Tower January 2010 - Animal Kingdom Villas (Kidani Village) May 2010 - Old Key West September 2010 - Bay Lake Tower May 2011 - Beach Club Villas October 2011 - Saratoga Springs January 2012 - Old Key West May 2012 - Old Key West October 2012 - Old Key West January 2013 - Family gathering at Old Key West; May 2013 - Wilderness Lodge Villas; November 2013 - AKL Jambo House; February 2014 - Saratoga Springs
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Old 01-14-2013, 03:53 PM   #41
Redwolf8812
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MDMommy - So happy for you! I continue to pray daily for miraculous healings for all of us.

Patsmom - Sounds like you had a great time. I used to get out of the wheelchair to stretch my legs and let the kids ride it. They were 15 and 8 at the time and would actually fight over it! I didn't get any weird looks though, probably because I had the "benefit" of "looking sick" with my turban for my bald head and a cane to help me walk.

- Penny
__________________
"The God of all grace who called you to his eternal glory through Christ [Jesus] will himself restore, confirm, strengthen, and establish you after you have suffered a little." (1 Peter 5:10)
Penny
1972 - 1984 many visits
1993 - Yacht Club, honeymoon, October
2001 - offsite, first visit with 2 kids, May
2002 - Fort Wilderness, October
2004 - Fort Wilderness, first visit with 3 kids, October - November, Food & Wine Festival, trick-or-treating in the campground
2006 - Fort Wilderness, October - November, Food & Wine Festival, trick-or-treating in the campground
2008 - Fort Wilderness, October - November, Food & Wine Festival, Mickey's Not So Scary Halloween Party, trick-or-treating in the campground
2011 - June - Old Key West & Bay Lake Tower, first visit as DVC owners after selling camper & truck, first visit post-cancer diagnosis (stage 3)
Easter 2012 - Animal Kingdom Kidani, first visit post-stage 4 cancer diagnosis
November 2012 - Boardwalk Villas
May 2013 - Treehouse Villas
December 2013 - Saratoga Springs
6/26-6/30/14 Saratoga Springs
Reservation for The Wilderness Lodge 5/3 - 5/8/15
next - it's all in God's Hands
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Old 01-16-2013, 09:03 AM   #42
PatsMom
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MDMommy - So happy for you! I continue to pray daily for miraculous healings for all of us.

Patsmom - Sounds like you had a great time. I used to get out of the wheelchair to stretch my legs and let the kids ride it. They were 15 and 8 at the time and would actually fight over it! I didn't get any weird looks though, probably because I had the "benefit" of "looking sick" with my turban for my bald head and a cane to help me walk.

- Penny
I think I got fewer "looks" on the day I was wearing my Cancer Sucks T shirt! When we go in May I will be wearing a headscarf since my hair will be long gone by then. I suppose that will help. I just keep remembering what my mother always told me - you'll never see these people again so who cares what they think!

I also continue to pray for miracles for all of us. I am doing the Relay for Life again this spring - my little gesture of help to find a cure. I don't know how much walking I'll do but I will be supporting the team in fundraising.
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1981 to 1983 - Disneyland many times November 1987 - Fairway Villas (prior to the Disney Institute)
September 1996 - Fort Wilderness (DD and DH's first trip) October 1999 - Fort Wilderness November 2001 - Fort Wilderness November 2004 - Fort Wilderness November 2005 - Saratoga Springs December 2006 - Saratoga Springs February 2007 - All Star Sports August 2007 - Boardwalk Villas November 2007 - Saratoga Springs February 2008 - Villas at the Wilderness Lodge August 2008 - Old Key West
December 2008 - Saratoga Springs February 2009 - Beach Club Villas September 2009 (50th birthday trip) - Bay Lake Tower January 2010 - Animal Kingdom Villas (Kidani Village) May 2010 - Old Key West September 2010 - Bay Lake Tower May 2011 - Beach Club Villas October 2011 - Saratoga Springs January 2012 - Old Key West May 2012 - Old Key West October 2012 - Old Key West January 2013 - Family gathering at Old Key West; May 2013 - Wilderness Lodge Villas; November 2013 - AKL Jambo House; February 2014 - Saratoga Springs
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Old 01-16-2013, 07:17 PM   #43
lmc318
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MDMommy, woohoo!!!! Congrats and good vibes for continued good results!

Pats mom - I'm glad you had a good trip ! I agree it's easier said than done to ignore people's looks. Shame we feel we need to show our pain or need to others so they will be more accepting. People should be more tolerant, but of course it's hard for all of us. Hope work is going well.
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Old 01-18-2013, 07:29 PM   #44
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Oh, thank you! I know, I should feel ok about it and revel in the fact that I can go at all. I still don't like the idea. I'm VERY independent and head strong. But I won't ruin the trip out of stubbornness, so if needed, I'll rent one.
That's a great attitude to have! My father was a 5 year cancer fighter, dx with Stage IV esophageal cancer in 2007. He was terminal, end stage when we went in November 2011. It was honestly the BEST week he had from August 2011 through his death in April 2012.

At the time of our trip, he had been receiving chemotherapy for 47 weeks straight and had 30 or so radiation treatments scattered in there as well. On the good days he was out in his wood studio working with heavy machinery. On the bad days he had to crawl down the hallway to his bed, and mom and I had to lift him into it

He was reluctant to rent a scooter. He didn't want to look "disabled". I knew he'd embrace it eventually, so I rented one behind his back

I also had a wonderful person on the DISign board make a license plate for the front that said "Lou's Ride" and for the back that said "Cancer Can't Stop Me" because on his good days, he LOOKED normal and I wanted to avoid "those comments".

Since we were going for the Christmas celebrations, I bought a few cheap things of garland from Wal-Mart, along with battery operated lights. I just looked through *all* of my photos and realized I didn't get a good picture of his wheels at night. Though here it is during the day



Good luck to all of you in your cancer journeys, and I hope that you all achieve a lifelong remission and have many good years ahead with your families, friends, and loved ones! If anyone has any specific questions on doing Disney while wrecked from treatment , I'd be happy to share what we learned!
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Old 01-21-2013, 08:57 PM   #45
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Thank you for the welcome Redwolf8812 and you are so right about it being no walk in the park but we can only take it day by day I will check back and provide any updates but now it's just delay after delay due to white blood cells and platelets being low but I'm so grateful my CA125 is way down so I'll take it

Patsmom you are truly an inspiration because I had so many issues with my hysterectomy I could barely make it out of the house let alone go to disney so let the haters hate or stare but you made it through a memory making trip and that's the important thing
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