Doing Disney with Stage 4 Cancer

[Redwolf8812]

Welcome, MdMommy. Please keep us posted about your upcoming scan. Praying for you.

Had my liver ablation yesterday morning. Tumor grew a little between last scan and yesterday's ablation. I called it a *******. The doctor called it a "burned *******". I was in there for about 2 hours. He had to use a CT scan to see it because it was hiding from the ultrasound machine. He also had to cook it a little longer. I came out of there drenched in sweat! Nausea & pain are starting to subside.

Came home to find the my bedroom decorated with lights, balloons, & cards, compliments of some friends.

I am so blessed!

 

[PatsMom]

MdMommy, welcome to a group you wish you didn't have to join! I am always interested in reading about how others are coping with a "normal" life activity such as going to Disney. Seems like since stage 4 can go on for so long that it just doesn't make sense to sit home and wait to die. I may as well enjoy my good time and hope that they medical people keep coming up with things to extend that good time.

We are expecting the "dirty looks" whan I arise from the wheelchair and walk for a mile or two. Certainly nothing "looks" wrong with me at this point. But I had a total hysterectormy on Thurs and am leaving for Disney 9 days later on Sun the 6th of Jan. I'll be walking, but not Disney distances. My daughter and husband plan to take a break in the chair when I am not using it. So I have steeled myself to ignore comments of "faker" and crap like that.

 

[MdMommy]

Penny, glad to hear that the nausea and pain are subsiding and that you have such thoughtful friends. Sometimes it seems that the treatment for cancer has worse side effects than the cancer itself.

PatsMom, yes it is possible to live with stage IV for years (I was diagnosed over 4 years ago). I refuse to give up on living until I actually die. Although, I am more limited now in what I can physically manage. I was fortunate enough to see my oldest DD graduate from high school last May. I would love to see my youngest DD graduate in a couple of years. My youngest DD is 15 and she asked if we could go to Disney World this year in celebration of her sweet 16. We won't be there for her actual birthday (February so not possible due to school), but we will celebrate her being 16 when we go in the summer. I have to have the ECV because I get short of breath just walking short distances. I don't worry about what other people think. No one ever said anything to me when I used one before and I didn't notice any looks. Just do what you need to do to have a good vacation.

 

[lmc318]

Welcome, MdMommy. Please keep us posted about your upcoming scan. Praying for you.

Had my liver ablation yesterday morning. Tumor grew a little between last scan and yesterday's ablation. I called it a *******. The doctor called it a "burned *******". I was in there for about 2 hours. He had to use a CT scan to see it because it was hiding from the ultrasound machine. He also had to cook it a little longer. I came out of there drenched in sweat! Nausea & pain are starting to subside.

Came home to find the my bedroom decorated with lights, balloons, & cards, compliments of some friends.

I am so blessed!

Good to hear the side effects are subsiding. And what a homecoming!! Rest up!

Happy New Year all!

 

[bopper]

I have a feeling I'll need to rent a wheelchair or ECV while I'm there, but I'm hoping not. During my cycle good weeks, I feel pretty good, but the more treatment I have, the more exhausted I get, so we'll see. I'm still praying for remission.

May I say OMG you have cancer so it is OK to use an ECV.
Don't think of it as "I am so bad off that I have to use a wheelchair" but
"I feel well enough to go to WDW and I am going to use this tool (wheelchair) that will let me have even more fun!"

 

[lmc318]

May I say OMG you have cancer so it is OK to use an ECV.
Don't think of it as "I am so bad off that I have to use a wheelchair" but
"I feel well enough to go to WDW and I am going to use this tool (wheelchair) that will let me have even more fun!"

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.

Started round three today - treatment #1. I'm exhausted. Not only did they give me aloxi, which makes me sleepy, but I was up at 5:15 to get ready for a 7AM treatment. Didn't get in until almost 8, but I had one of my favorite nurses, so it was worth it. They're trying to get in all the treatments missed over the holidays, so it was packed in the infusion room and waiting room. Actually, mostly the waiting room. The infusion room seemed about 1/2 full. Don't know what the hold up was. There were plenty of staff members.

Anyhoo, 1 down, 2 to go! Woohooooo!

 

[DCDisney]

My 38 yo Sister with 2 toddlers was also diagnosed with unknown primary this Summer. Very scary with lung, pancreas, and lymph nodes all involved. 1st set of chemo didn't work but halfway through a new type and hoping for some improvement. I so want her to get healthy enough to be able to take her kids to WDW. I was trying to think f ways to conserve energy but have great experiences so I was thinking character meals, fireworks cruises,etc. We won't be able to preplan b/c of chemo schedule and varying levels of pain and feeling ill so I hope there will be some way to get some pixie dust to make ADRs. It's just a really awful thing in general and esp with pancreas.

 

[lmc318]

My 38 yo Sister with 2 toddlers was also diagnosed with unknown primary this Summer. Very scary with lung, pancreas, and lymph nodes all involved. 1st set of chemo didn't work but halfway through a new type and hoping for some improvement. I so want her to get healthy enough to be able to take her kids to WDW. I was trying to think f ways to conserve energy but have great experiences so I was thinking character meals, fireworks cruises,etc. We won't be able to preplan b/c of chemo schedule and varying levels of pain and feeling ill so I hope there will be some way to get some pixie dust to make ADRs. It's just a really awful thing in general and esp with pancreas.

I'm so sorry to hear this news. My heart breaks for her and you and the family. CUP sucks in so many ways, especially because they don't exactly know how to treat it and it's pretty much a guessing game. I'm very aware of how lucky I am even to get this improvement for now, even if I never go into remission. With lung and pancreatic being the top two types of eventual types of diagnosis for CUP, it makes me very happy to hear things like Obama just singing into law funding for priority research for the most deadly cancers, lung and pancreatic being the top two.

Do what you can with her. Work aorund chemo. Once you get a set schedule down, go. Even if it's just for three days and she's in a wheelchair, it will be something she and her little ones will always have. Make memories for her and for you and for them. I can't give these enough.

 

[lmc318]

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.

 

[PatsMom]

My 38 yo Sister with 2 toddlers was also diagnosed with unknown primary this Summer. Very scary with lung, pancreas, and lymph nodes all involved. 1st set of chemo didn't work but halfway through a new type and hoping for some improvement. I so want her to get healthy enough to be able to take her kids to WDW. I was trying to think f ways to conserve energy but have great experiences so I was thinking character meals, fireworks cruises,etc. We won't be able to preplan b/c of chemo schedule and varying levels of pain and feeling ill so I hope there will be some way to get some pixie dust to make ADRs. It's just a really awful thing in general and esp with pancreas.

I am so sorry to hear about your sister. One of the blessings I count when I am not feeling so good is that the cancer remained away until my daughter turned 21. She will graduate from college this spring so I am most likely going to be there for that. Two toddlers would be heart breaking.

The docs doing chemo are usually willing to work with you for vacations and things. Especially when the prognosis is a bit grim and making a huge family memory is involved. A wheelchair or scooter will help with stamina - just make sure to get up and walk sometimes! You really get even more sore sitting all day. If you go off season and don't need to eat at prime time, ADR's for character meals should be doable. We are doing dinner at Chef Mickey's this trip and breakfast at Tusker House. My grandson's first trip and we figured this way he would meet some of his top characters without waits. If you have girls, consider Akershus for a princess breakfast instead of Cinderella's. Much easier to get!

The pain sucks the worst. People dont' realize that cancer hurts. They understand when you are in pain from surgery or something like that but don't realize that just having the cancer hurts. The pressure my lymph nodeds put on various body parts causes intense pain. And your sister probably doesn't want people to know how bad she hurts - you do get tired of people asking how you feel. I'd rather have them ask me what I feel like doing! Don't know why but that makes a difference.

 

[Redwolf8812]

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

 

[lmc318]

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?

 

[Redwolf8812]

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

 

[Redwolf8812]

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

 

[dizprincess27]

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!!

 

[jacksgirl]

Thanks for this thread Redwolfe. Lanagraves from BCO here. Looking forward to our next WDW trip in September.

 

[LaurenS]

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.

 

[Redwolf8812]

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!

 

[MdMommy]

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!

 

[PatsMom]

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.