Doing Disney with Stage 4 Cancer

I am just starting on the journey of this monster called breast cancer. Diagnosed earlier this month. I certainly plan to visit WDW while I am going through treatment. Disney is my happy place.

You deserve your "happy place"! You are in my prayers!
 
My mom was first diagnosed with breast cancer in March 1996. We had to cancel a Disney trip planned that month. It didn't look good, it had spread into her lymph nodes. She had surgery, radiation & chemo and I rescheduled the trip for November. Her hair was just coming in, it was very short. She did not want to go, she was very depressed. I pushed her and she went and it totally changed her outlook. She realized she still had a life. Unfortunately, it came back at the end of 1999. She started on Herceptin and when that stopped working she went on various types of chemo. We still managed our twice a year trips to WDW. There were times when she needed to rest, we always took an afternoon break. It eventually took over her liver and she passed away in 2005, almost 10 years after her diagnosis. She told me before she died that she never regretted going on all our vacations even though sometimes it was hard. It reminded me of the Leeann Womack song "if you have a choice to sit it out or dance, I hope you dance".
 
I just had an MRI of my liver this past Tuesday. 2 little tumors and 1 bigger one. Not as good as June but still better than back in March and about the same as this time last year. Looks like I'll be having another RFA (Radiofrequency Ablation) on those tumors then continue on with more chemo. I'm trying to absorb all this so I can "pull my boot straps back up and get back in the saddle". Thanks for all the prayers. I don't think remission or a cure is His Will for me right now. I still thank Him for all my Blessings. I pray He allows us to have this upcoming vacation in Disney in December as planned, especially to spend the time with family and friends and see the Christmas lights.

God Bless.

- Penny
 
A radiofrequency ablation of the three tumors in my liver will be done tomorrow @12:30. It'll probably take about an hour and then I stay in recovery for @ 6 hours before they send me home. I will keep you posted thereafter. Again I ask for prayers. I place my health, my family, my medical team, the procedure and its results in God's Hands. I consecrate them to Him and ask Him to bless them, for the praise and Glory of the Lord, in Jesus' name, I pray. Amen.
To learn more about RFA, click here: http://www.uphs.upenn.edu/radiology/patient/services/ir/info/radio.html
 
A radiofrequency ablation of the three tumors in my liver will be done tomorrow @12:30. It'll probably take about an hour and then I stay in recovery for @ 6 hours before they send me home. I will keep you posted thereafter. Again I ask for prayers. I place my health, my family, my medical team, the procedure and its results in God's Hands. I consecrate them to Him and ask Him to bless them, for the praise and Glory of the Lord, in Jesus' name, I pray. Amen.
To learn more about RFA, click here: http://www.uphs.upenn.edu/radiology/patient/services/ir/info/radio.html

Thank you for sharing this information. I have stage 4 colon cancer that resulted in me loosing half my liver. It is nice to know there are other options for if the cancer is found in my liver again. it is not an option to remove more of the liver.
 
Hi, everyone--what a great idea for a thread! I'm a breast cancer survivor, and my partner has twice battled a rare, aggressive cancer. Fifteen years ago, they told me that she would be lucky to live two months. I tell you this not to be a downer--but to say that we learned one thing from this experience: Numbers are only numbers. You are either 100% alive or 100% dead--and if you're reading this, you're 100% alive! Don't let any other numbers matter.

We've done Disney three times with cancer--we developed lots of tips and tricks, and I'd be happy to share them. In the meantime, here's another lesson that brings me peace:
Cancer Cannot Stop Magic!!!

Stay strong!
Lisa
 


Hi all
We will be at Disney Monday. My dad just finished a chemo treatment today and will fly down to Daytona to visit his siter Saturday. I have rented him a scooter. Any tips you all have for making this trip frat for him would be appreciated. Would you recommend trying to get a DAC or whatever they are called now. I would prefer him not to have to wait in long lines, trying to keep him away from crowds as much as possible since his immune system is compromised. I know That sounds dumb since we are going to Disney which will be crowed :)
 
ejayne2 - So sorry I saw your message this late. You're probably in Disney having a great time as I type this. The scooter is a great idea. You have to wait in line with it and then as you get a little closer usually a cast member will pull your group out of line and put you somewhere closer. Your dad may need naps so be prepared to leave a park in the middle of the day and go back later, or jut do parks in the am, and enjoy the hotel pool and relax in the pm. Pack hand sanitizer and make sure he uses it before he eats. Learn his cues - when he's tired, hungry, nauseous, needing pain meds, etc. Disney is so disability-friendly - hopefully you're all having a great time, making plenty of memories! Please post when you get back and let us know how you made out.

:thumbsup2 Penny
 
I stumbled onto to this thread and so glad I did. I'll try to keep my introduction quick. Diagnosed with metastatic breast cancer December 2010. Found the BC in my bones before it was found in my breast.

I've been to WDW 4 times since then (DD and myself and various friends and/or family) and with varying degree of success. March 2011, 5 days in WDW and 2 days at Universal Studio. I was still suffering from severe depression and it was too close to my round of radiation. Plus developed shingles on the trip. March 2012, we spent 5 days in WDW and 3 in Sarasota, March 2013, 2 day WDW, 3 days Clearwater Beach and Phillies Spring Training and 2 days Universal Studio. June 2013 4 days in WDW.

I have a wonderful husband who is a Philadelphia police officer and a soon to be 16 year old daughter. She is my biggest reason for living and when I was diagnosed, she was 13, the same age I was when my father died of stage 4 prostate cancer.

I'm planning a trip for March 2014 and the biggest issue I have is getting around the park. I know she's embarrassed when I use a cane so I know a scooter would freak her out. When I mention using a scooter, she always asks if I'm going to die and I always tell her not today.

Getting myself around this morning for my quarterly CT and bone scans at Penn (shot out to my fellow Penn patients). I just came off a clinical trial (rapid growth in my shoulder and I needed radiation for the pain) so I'm preparing for a change in my meds.

Happy Halloween everyone!

Faith
 
I stumbled onto to this thread and so glad I did. I'll try to keep my introduction quick. Diagnosed with metastatic breast cancer December 2010. Found the BC in my bones before it was found in my breast. I've been to WDW 4 times since then (DD and myself and various friends and/or family) and with varying degree of success. March 2011, 5 days in WDW and 2 days at Universal Studio. I was still suffering from severe depression and it was too close to my round of radiation. Plus developed shingles on the trip. March 2012, we spent 5 days in WDW and 3 in Sarasota, March 2013, 2 day WDW, 3 days Clearwater Beach and Phillies Spring Training and 2 days Universal Studio. June 2013 4 days in WDW. I have a wonderful husband who is a Philadelphia police officer and a soon to be 16 year old daughter. She is my biggest reason for living and when I was diagnosed, she was 13, the same age I was when my father died of stage 4 prostate cancer. I'm planning a trip for March 2014 and the biggest issue I have is getting around the park. I know she's embarrassed when I use a cane so I know a scooter would freak her out. When I mention using a scooter, she always asks if I'm going to die and I always tell her not today. Getting myself around this morning for my quarterly CT and bone scans at Penn (shot out to my fellow Penn patients). I just came off a clinical trial (rapid growth in my shoulder and I needed radiation for the pain) so I'm preparing for a change in my meds. Happy Halloween everyone! Faith
Faith, you are an inspiration! I needed to hear this today:)
 
I'm thinking of all of you as you plan your upcoming trips. Make it happen and enjoy the magic!

We returned from ours on Oct. 22nd. It was a great trip except for the last day when I developed a GI bug. Ugh! Thankfully me husband bought some immodium so I was OK on the flight home. I should mention that 5 out of our group of 19 became ill.

Our trip included a stay at Vistana which I highly recommend. My highlight of the trip was Discovery Cove which I absolutely loved. I can cross this off my Life List (I don't believe in buckets). We also went to Sea World and Aquatica. I rented a wheelchair for MNSSHP in Magic Kingdom and we stayed till right before closing. It was a fun time sharing it with our 3 grandsons. We also enjoyed a lovely meal at Villa de Flora in the Gaylord Palms. It was just my husband and me and a romantic setting.

I had my 3 month tests last week-CT Scan and 2d Echo Cardiogram. The results were good and even better than expected on the CT. The largest lesion has shrunk by half and is substantially smaller than when I started chemo in July 2012. I had chemo yesterday at my new center MD Anderson at Cooper which is a beautiful center designed for patient comfort.

So with all that said we are planning our next vacation. 2 cruises back to back out of Cape Liberty on Explorer of the Seas to the Bahamas (Port Canaveral included) and the 2nd leg of our journey travels to Bermuda. We'll be celebrating our 40th anniversary.

I'm feeling very blessed that my health is improving! I'll be a 6 year survivor of Endometrial cancer in Dec. I've had 2 recurrences in the pelvic region and the last one made me a mental mess. I'm a realist when it comes to my health and I'm usually not big on statistics but when I read that the 5 year survival rate for recurrent endo. cancer is 18 %, I wanted to beat those odds. So, I'm hanging in there and doing everything my docs recommend and I'm also willing to do a clinical trial if necessary.

Think happy, healthy and healing thoughts everyone! Thanks for reading my long-winded post.



A fun day at Discovery Cove-bad hair and no makeup but who cares!
 
Hi, DisDee, from a fellow native of South Jersey. I loved your post. Sounds like you all had a great time. I've always kind of wanted to do Discovery Cove. But the idea of squeezing into a wet suit - yeesh. :eek::eek:

- Penny
 
Penny, I've put off going to Discovery Cove for years and I'm so glad I finally did it. The admission also includes 2 weeks of admission to Sea World and Aquatica around your Dis. Cove visit. We opted out of the Dolphin Experience since I really didn't have any interest in that. I wanted to snorkel with the fish and rays and that experience was wonderful. Well worth the price for me with the admission to the other parks. Plus you are fed all day long at DC-breakfast, lunch, snacks and beverages (including alcohol).

Now regarding the wet suit-there's no way I was wearing one of those. You can choose a vest like I did. It was very comfortable but you have to wear something for safety identification when you are in the pools.

DC is pure paradise! Even my skeptical husband thoroughly enjoyed himself. BTW, we bought an underwater camera for this trip and had a blast taking crazy pics while submerged.

All the best to you as you continue your treatment journey!
 
I stumbled onto to this thread and so glad I did. I'll try to keep my introduction quick. Diagnosed with metastatic breast cancer December 2010. Found the BC in my bones before it was found in my breast.

I've been to WDW 4 times since then (DD and myself and various friends and/or family) and with varying degree of success. March 2011, 5 days in WDW and 2 days at Universal Studio. I was still suffering from severe depression and it was too close to my round of radiation. Plus developed shingles on the trip. March 2012, we spent 5 days in WDW and 3 in Sarasota, March 2013, 2 day WDW, 3 days Clearwater Beach and Phillies Spring Training and 2 days Universal Studio. June 2013 4 days in WDW.

I have a wonderful husband who is a Philadelphia police officer and a soon to be 16 year old daughter. She is my biggest reason for living and when I was diagnosed, she was 13, the same age I was when my father died of stage 4 prostate cancer.

I'm planning a trip for March 2014 and the biggest issue I have is getting around the park. I know she's embarrassed when I use a cane so I know a scooter would freak her out. When I mention using a scooter, she always asks if I'm going to die and I always tell her not today.

Getting myself around this morning for my quarterly CT and bone scans at Penn (shot out to my fellow Penn patients). I just came off a clinical trial (rapid growth in my shoulder and I needed radiation for the pain) so I'm preparing for a change in my meds.

Happy Halloween everyone!

Faith

Faith, how did you scans go? My BIL is currently a patient at Penn too. He was diagnosed with Leukemia last January and is fighting a hard battle. He had a transplant in June and is still waiting for it to "take".

I'm trying to think of a way to help your daughter understand that a scooter would be for comfort purposes for you. Almost 16 is a hard age to understand the full picture but maybe you could explain how you could get more park time in if you have an easier time getting around. You could also tell her how people with conditions like severe arthritis, aging, asthma and many others also use scooters not just people who have cancer. I hope it works out for you and your needs are met as well as your daughter's.

BTW-we live across the river in Pennsauken so we're kinda like neighbors.

All the best to you as you continue treatment.
 
I stumbled onto to this thread and so glad I did. I'll try to keep my introduction quick. Diagnosed with metastatic breast cancer December 2010. Found the BC in my bones before it was found in my breast.

I've been to WDW 4 times since then (DD and myself and various friends and/or family) and with varying degree of success. March 2011, 5 days in WDW and 2 days at Universal Studio. I was still suffering from severe depression and it was too close to my round of radiation. Plus developed shingles on the trip. March 2012, we spent 5 days in WDW and 3 in Sarasota, March 2013, 2 day WDW, 3 days Clearwater Beach and Phillies Spring Training and 2 days Universal Studio. June 2013 4 days in WDW.

I have a wonderful husband who is a Philadelphia police officer and a soon to be 16 year old daughter. She is my biggest reason for living and when I was diagnosed, she was 13, the same age I was when my father died of stage 4 prostate cancer.

I'm planning a trip for March 2014 and the biggest issue I have is getting around the park. I know she's embarrassed when I use a cane so I know a scooter would freak her out. When I mention using a scooter, she always asks if I'm going to die and I always tell her not today.

Getting myself around this morning for my quarterly CT and bone scans at Penn (shot out to my fellow Penn patients). I just came off a clinical trial (rapid growth in my shoulder and I needed radiation for the pain) so I'm preparing for a change in my meds.

Happy Halloween everyone!

Faith

Embarrassed? Would she be embarrassed of you wearing glasses if your vision was poor? TONS of people in the parks use scooters, chairs, etc. you wouldn't stand out or draw any attention. We had a very hard time talking my FIL (stage 3 bone marrow cancer) into using a wheelchair, but when he did he was MUCH happier and more comfortable. He was embarrassed that he 'needed help', until he realized that absolutely no one took any special notice of him for using an aid.

There's a great disABILITIES thread on "what having a wheelchair means" on here, give it a once-over and maybe show it to DD?
 
DebbieB said:
My mom was first diagnosed with breast cancer in March 1996. We had to cancel a Disney trip planned that month. It didn't look good, it had spread into her lymph nodes. She had surgery, radiation & chemo and I rescheduled the trip for November. Her hair was just coming in, it was very short. She did not want to go, she was very depressed. I pushed her and she went and it totally changed her outlook. She realized she still had a life. Unfortunately, it came back at the end of 1999. She started on Herceptin and when that stopped working she went on various types of chemo. We still managed our twice a year trips to WDW. There were times when she needed to rest, we always took an afternoon break. It eventually took over her liver and she passed away in 2005, almost 10 years after her diagnosis. She told me before she died that she never regretted going on all our vacations even though sometimes it was hard. It reminded me of the Leeann Womack song "if you have a choice to sit it out or dance, I hope you dance".

I am so glad you were able to take a few last trips with your mother!! My mother was 1st diagnosed with cancer in 1986, just 3 yrs after I was born. She had surgery and was told told if it didn't return in 12 yrs it more than likely would return at all, the 13th yr she found a lump. In 2000 she was told she had 2 yrs left, she ended up living 7 more yrs. I wish so much that I had a different perspective on life during that time (I was a teenager) and that we had enjoyed WDW more together in the later years, thankfully we did go plenty of times throughout the 90's. I love that song by Leann Womack, it's such a great reminder.

Redwolf8812 said:
I just had an MRI of my liver this past Tuesday. 2 little tumors and 1 bigger one. Not as good as June but still better than back in March and about the same as this time last year. Looks like I'll be having another RFA (Radiofrequency Ablation) on those tumors then continue on with more chemo. I'm trying to absorb all this so I can "pull my boot straps back up and get back in the saddle". Thanks for all the prayers. I don't think remission or a cure is His Will for me right now. I still thank Him for all my Blessings. I pray He allows us to have this upcoming vacation in Disney in December as planned, especially to spend the time with family and friends and see the Christmas lights.

God Bless.

- Penny

Penny, stay strong and I hope your December vacation to WDW goes as planned!!!

LisaLuka said:
Hi, everyone--what a great idea for a thread! I'm a breast cancer survivor, and my partner has twice battled a rare, aggressive cancer. Fifteen years ago, they told me that she would be lucky to live two months. I tell you this not to be a downer--but to say that we learned one thing from this experience: Numbers are only numbers. You are either 100% alive or 100% dead--and if you're reading this, you're 100% alive! Don't let any other numbers matter.

We've done Disney three times with cancer--we developed lots of tips and tricks, and I'd be happy to share them. In the meantime, here's another lesson that brings me peace:
Cancer Cannot Stop Magic!!!

Stay strong!
Lisa

Lisa that is amazing!!! I hope you both continue succeeding in your fight!!

Jade's Mom said:
I stumbled onto to this thread and so glad I did. I'll try to keep my introduction quick. Diagnosed with metastatic breast cancer December 2010. Found the BC in my bones before it was found in my breast.

I've been to WDW 4 times since then (DD and myself and various friends and/or family) and with varying degree of success. March 2011, 5 days in WDW and 2 days at Universal Studio. I was still suffering from severe depression and it was too close to my round of radiation. Plus developed shingles on the trip. March 2012, we spent 5 days in WDW and 3 in Sarasota, March 2013, 2 day WDW, 3 days Clearwater Beach and Phillies Spring Training and 2 days Universal Studio. June 2013 4 days in WDW.

I have a wonderful husband who is a Philadelphia police officer and a soon to be 16 year old daughter. She is my biggest reason for living and when I was diagnosed, she was 13, the same age I was when my father died of stage 4 prostate cancer.

I'm planning a trip for March 2014 and the biggest issue I have is getting around the park. I know she's embarrassed when I use a cane so I know a scooter would freak her out. When I mention using a scooter, she always asks if I'm going to die and I always tell her not today.

Getting myself around this morning for my quarterly CT and bone scans at Penn (shot out to my fellow Penn patients). I just came off a clinical trial (rapid growth in my shoulder and I needed radiation for the pain) so I'm preparing for a change in my meds.

Happy Halloween everyone!

Faith

Hi Faith, when I was 16 my mother was also battling cancer. Unfortunately at 16, at least I know for me, I was more concerned with myself. I would have probably been the same as your daughter at age 16 if my mother had needed a wheelchair. Now, I would give anything to have my mom back and take a trip to WDW, even if it meant visiting in a wheelchair. Maybe explain to your daughter that you get tired very easily and with the wheelchair you will be more comfortable and able to spend more time in the parks. I hope it all works out!!

Hugs to everyone!

Sent from my Galaxy SII
 
Hey, Faith, what if you remind your daughter that a typical WDW day involves walking 10 miles? That sobering number might help her understand why it would help you so much to not have to invest all your available energy into just putting one foot in front of the other. Good luck!
 
As a follow-up to the liver ablation, I'm having an MRI tomorrow to see what the burned tumors look like. If everything looks good and there's no new growth, I'll stay on my current chemo - TDM1. If not, my oncologist would like me to go on another clinical trial. So, I'm praying that God directs my treatment for His Will and for the Grace to accept His Will. TDM1 has been fairly easy to tolerate so I wouldn't mind staying on it, but it's in His Hands. Please continue to keep me and my family in your prayers. Thank you!

- Penny
 
So let me see if I can explain my situation. The liver MRI from Wednesday the 13th of November doesn't seem to show "new" tumors but the tumor that was ablated has an area on its rim that may or may not be viable (live). So while the oncologist waits for another radiologist to read the scan I'm staying on the current chemo. Further decisions will be made based on the other radiologist's reading. Everything ran so late that I couldn't get chemo that day so I had to go back in the am for treatment. Praise God for this good report! Thanks for all the prayers - please carry on!

- Penny
 

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