Doing Disney with Stage 4 Cancer

[PatsMom]

Well I don't know if I technically fit under this thread anymore...but I wanted to update you guys anyway. I had my appt. and I am scheduled for surgery on April 8th. After looking at the most recent ultrasound the surgeon stated that one of the bigger cysts. I had had indeed ruptured which caused me a lot of pain. ( had to go to Er last week for nausea, loss of appetite, swollen abdomen, and extreme pain) The surgeon believes I have stage 4 endometriosis which will have to be treated aggressively. I will have to be on strong hormone pills to put me in Pre-menopause for the rest of my life. He also believes that the endometriosis has caused a bunch of scar tissue and inflammation and is actually pushing and invading all of my abdominal organs...so he will be doing an initial laparoscopy up by my ribs( anybody have somthing similar?) so he can put the scope down and look from that direction. A lot will depend on what he sees when he gets in there, but he does believe that I will most likely lose that one ovary that's encompassed by the large cyst and it might end up as an abdominal incision if there is too much going on. I still have a solid tumor that will have to be biopsied and taken out..guess I will find out then if I have cancer in addition to endomitriosis. I have mixed feelings..happy that it is going to be taken care of so soon....but also scared and nervous for it to be happening so soon as well..if that makes any sense. I am super glad I Went to Disneyland this week and am just hoping for a fast and healthy recovery.

I so hope this will turn out to be good news for you. Better menopause and medications than stage 4 cancer! Painful and emotionally tough but not terminal. HOpe that the solid tumor is just an anomaly. But as far as I am concerned, you still belong in the group. Stage 4 endo is stage 4 something! Much better to have no terminal diagnosis. But you are supportive and friendly and I think those are the only real criteria for a group like this. Rules can't be too strict!

 

[rewardsinlife]

Well I am glad I still fit in the group! I love this group!

Tomorrow is surgery! I am a bit nervous, but am more interested in what they find and how much they take out! Just keeping Disney in my mind for the long run so I can get back there soon! Love to you all! I will update once I am recovering.

 

[Redwolf8812]

Just got back from Treehouse Villas in Disney World. Me, my husband, our 2 daughters, an aunt, my best friend and her mom. The first night we were there two other close friends showed up as a surprise. It was great. My friends all took my girls around to the parks while my husband and I mostly relaxed and enjoyed being away.

Happy Mothers' Day!

- Penny

 

[3PrinceMom]

Prayer's to all fighting Cancer....no matter what the stage. There is hope in faith and treatment.

You can beat this!

 

[PatsMom]

Just got back from Treehouse Villas in Disney World. Me, my husband, our 2 daughters, an aunt, my best friend and her mom. The first night we were there two other close friends showed up as a surprise. It was great. My friends all took my girls around to the parks while my husband and I mostly relaxed and enjoyed being away.

Happy Mothers' Day!

- Penny

Sounds like a great trip. Hope you had a wonderful time. I am off in two weeks! Stamina is going to be huge this trip but my daughter and wheelchair pusher extraordinaire is going with me! Not sure what I will do in the fall when we go without her. I am hoping for remission and being able to walk. My husband can't push me and the problem with a scooter is that I am stuck with it. With the chair I can walk when I want to stretch and need some exercise. I can also leave it so I don't have to go through the alternate ride entrance at places like Spaceship Earth and Kilimanjaro Safari. I guess I can leave a scooter too I just think I am going to worry about something happening to expensive rented equipment! Especially since I will rent from an offsite company to save a few bucks.

Glad to see this thread back on the first page. Hello to all and I hope everyone is doing well right now. Read a great article today about biologic cancer drugs (like Avastin). Every new find gives me hope - I just have to stay alive long enough for them to find the next treatment for my type of cancer!

 

[Mama Who]

Just wanted to share the great news! I had my CT yesterday following my latest round of chemo and as of now, I am disease free!

YAY YOU!!!!!!

 

[DisDee]

I'm so glad I found this thread! I have recurrent, persistent and inoperable endometrial cancer but I'm not letting it stop me from doing the things I love, especially traveling. I'm currently on a monthly chemo treatment of Lipodox with scans after every third treatment. This is a treatment is maintenance for lack of a better term with hopes that the tumors remain stable and there is no additional growth. I started this journey in Dec. 2007 and my case has been the opposite of the norm since day 1.

With all that said, I recently returned from a cruise on Allure of the Seas and now I'm starting to actively plan our extended family trip to WDW in Oct. I experienced a problem on the cruise which I didn't quite know how to deal with so I tried to ignore it. I rented a wheelchair to be delivered to the ship because of the fatigue I sometimes experience and our stateroom attendant felt it was her obligation to make a comment as to whether I was walking or riding in the chair each time she saw me. She really got on my last nerve and I wonder if this is Royal Caribbean's way to test if someone really needs an accessible cabin. Maybe I'm just being paranoid but we all know about 'hidden disabilities" and the whispered comments that we sometimes hear. Well, enough of that because it was a really wonderful cruise.

I hope to be in good walking condition for the Oct. trip but I'm not sure as to whether I'll rent a scooter or bring a chair. I don't need assistance all the time but I'm grateful to have it when I need it.

I noticed a couple of you are from South Jersey/Phila. so I wanted to mention the upcoming Walk for Hope which is being held on Sept. 22. It starts at Campbell's field in Camden then over the Ben Franklin Bridge and ends at Head House Square in Old City. I wasn't able to walk last year but my team did and it was very uplifting!

 

[Redwolf8812]

DisDee, where are you in South Jersey? I'm in Egg Harbor Twp. I'll understand if you don't want to answer. We never know who we're dealing with here.

 

[DisDee]

DisDee, where are you in South Jersey? I'm in Egg Harbor Twp. I'll understand if you don't want to answer. We never know who we're dealing with here.

I live in the Cherry Hill area.

 

[Redwolf8812]

I live in the Cherry Hill area.

Home of the Cheesecake Factory! I got to UPenn for treatment and sometimes we stop there on the way home.

- Penny

 

[PatsMom]

I'm offf tomorrow and so looking forward to it. DisDee - I am learning to ignore the comments and "looks". Let those people walk a mile in my shoes is the thought I try to stick with. the chair does not shorten my waits, it makes them longer usually - that's why I like to leave it at some attractions. There is still a perception that a wheelchair means "front of the line". It really means "get pulled out of line and wait".

The chair is a lifesaver while doing chemo. The exhaustion is just so overwhelming sometimes. Today I am nauseous. Not supposed to be based on how many days it has been since treatment but I am. So I am taking medications and they make me even more tired. I believe that as long as I am doing chemo I will need help at Disney. That will be either a chair or scooter depending on whether my daughter is going with me or not. She likes to push me - makes her feel in control. And she demands a bribe since she is saving me a ton of money! We own our own wheel chair but would have to rent a scooter. So she is a tremendous savings, until it is souvenir time. Then she reminds me that she just spent a week wheeling my butt around Disney!

 

[Piper]

Sounds like a great trip. Hope you had a wonderful time. I am off in two weeks! Stamina is going to be huge this trip but my daughter and wheelchair pusher extraordinaire is going with me! Not sure what I will do in the fall when we go without her. I am hoping for remission and being able to walk. My husband can't push me and the problem with a scooter is that I am stuck with it. With the chair I can walk when I want to stretch and need some exercise. I can also leave it so I don't have to go through the alternate ride entrance at places like Spaceship Earth and Kilimanjaro Safari. I guess I can leave a scooter too I just think I am going to worry about something happening to expensive rented equipment! Especially since I will rent from an offsite company to save a few bucks.

Glad to see this thread back on the first page. Hello to all and I hope everyone is doing well right now. Read a great article today about biologic cancer drugs (like Avastin). Every new find gives me hope - I just have to stay alive long enough for them to find the next treatment for my type of cancer!

Pat's Mom--you can park the ECV in the stroller parking area when you feel the need to walk! Just be sure to take the key with you!

 

[theebeemommy]

Hey guys newer to disboards. Husband was diagnosed with stage 2-early three rectal cancer. We pushed back trip after diagnosis to start and finish course of radiation and chemo (NFu pump). He will be one week post 5 week treatment when we go ( when we get back he has 3-4 more weeks to heal aka recover from treatment before they do surgery ). He really wants to go to Disney prior to surgery instead of pushing trip to next year. He's relatively young 38 and we have three kids. He'll be going back to nap with our two year old. Do you guys think we should get a wheelchair just in case?? As of now he feels great after a day unplugged from chemo pump on weekends. He doesn't want wheelchair but I think it's not a bad idea . Looking for any guidance! Prayers to you all! Lost my dad to prostate cancer and my mom is in remission from beast cancer! Cancer stinks but cancer can never take ones faith and love!!!!

 

[rewardsinlife]

Hey guys newer to disboards. Husband was diagnosed with stage 2-early three rectal cancer. We pushed back trip after diagnosis to start and finish course of radiation and chemo (NFu pump). He will be one week post 5 week treatment when we go ( when we get back he has 3-4 more weeks to heal aka recover from treatment before they do surgery ). He really wants to go to Disney prior to surgery instead of pushing trip to next year. He's relatively young 38 and we have three kids. He'll be going back to nap with our two year old. Do you guys think we should get a wheelchair just in case?? As of now he feels great after a day unplugged from chemo pump on weekends. He doesn't want wheelchair but I think it's not a bad idea . Looking for any guidance! Prayers to you all! Lost my dad to prostate cancer and my mom is in remission from beast cancer! Cancer stinks but cancer can never take ones faith and love!!!!

Sorry to hear about your husband. You do seem to have the right outlook though to not let it get you all down!

This is what I have done in the past with the wheelchair. At first, I would just go and walk as far as I could. Then if it was still relatively early in the day, one of my family members would go back to the entrance and rent a WC for the rest of the day from the park. This worked a couple times till we got Annual passes and knew it would get quite expensive doing this.

So..I bought a wheelchair ( cheap..and somewhat light one that I could propel myself in when family got tired). Days I am exhausted I ride in it from the very beginning of the day. Other days I feel ok to walk, we leave itin the car in the parking lot and then someone goes back to get it when needed.( usually one of the members of my family needs a break from the crowds at this point anyway so it works out pretty well.)

If you don't want to buy one..many places you can rent and do the same type if thing with using it half day...or when tired. Find the sticky at the top of the disability thread to find all the places thatmwill rent ecv or WC for cheap and of course are reliable as well. Might even work well for him to go back to room and take a nap with the two year old and then bring backin the WC then when returning to the park..since as the day wears on fatigue will set in!

Hope this helps

 

[Disney_Fanatic25]

Hi everyone! My name is Christina and I have been battling CML which is a chronic form of leukemia for about a year. I'm just starting yet another round of chemo in hopes I can go into remission. I want to go to Disney next week with my kids before they go to their dads for the summer but haven't been since I have been diagnosed so I don't know what to expect. I also have a son who is autistic and an adhd daughter so this should be interesting Lol I just hope I survive the trip. Well I just wanted to introduce myself and prayers for those going through treatment right now. I'm glad there is a place on the boards for those of us going through this.

 

[theebeemommy]

Hi everyone! My name is Christina and I have been battling CML which is a chronic form of leukemia for about a year. I'm just starting yet another round of chemo in hopes I can go into remission. I want to go to Disney next week with my kids before they go to their dads for the summer but haven't been since I have been diagnosed so I don't know what to expect. I also have a son who is autistic and an adhd daughter so this should be interesting Lol I just hope I survive the trip. Well I just wanted to introduce myself and prayers for those going through treatment right now. I'm glad there is a place on the boards for those of us going through this.

Prayers to you! I work exclusively with kids with autism as a speech therapist in the schools and I hope and pray for your recovery and for a wonderful trip for your Family! You deserve it!

 

[DisDee]

Home of the Cheesecake Factory! I got to UPenn for treatment and sometimes we stop there on the way home.

- Penny

Yes, we are fairly close to the CCF!

My BIL is also is undergoing treatment at Penn for Leukemia. In fact he recently received word that a match has been found so he will be admitted next week to start the process. Many prayers have been answered!!!!!

I am currently a patient at Cooper and so far so good!

 

[dizprincess27]

I live in Mt. Laurel NJ and am a patient of Cooper Cancer Center in Voorhees! Small world pun intended lol

 

[Disney_Fanatic25]

I'm hoping someone can help I am having a lot of nausea and vomiting. I'm allergic to all of the typical anti nausea meds like zofran compazine reglan. The only one I can take is phenegran but it isn't working. I've tried sucking on pepermints and drinking flat soda but nothing is helping. I'm trying to not have to go in to the hospital. Any tips on getting this under control?

 

[amykathleen2005]

I'm hoping someone can help I am having a lot of nausea and vomiting. I'm allergic to all of the typical anti nausea meds like zofran compazine reglan. The only one I can take is phenegran but it isn't working. I've tried sucking on pepermints and drinking flat soda but nothing is helping. I'm trying to not have to go in to the hospital. Any tips on getting this under control?

Try domperadone. You'll have to get it from a compounding pharmacy. You will need a prescription, but it works well.

Or pregnancy pops.