disney, kids and stage IV

[debzak]

So we just returned from 5 days at Walt Disney World Florida. We had not gone any where in over 2 years. I was diagnosed stage III on 2/27/12 and then stage IV with liver mets in May 2013. We never got a change to do anything since the summer or 2011(we typically go away in august). So I decided that we, (mostly me) needed to get away from cancer before my next scan with Dr. K and who know what news. So we planned the trip about 5 weeks ago without telling the girls (ages 12 and 15).

So in my analytical head, this could be my last family vacation. I expected perfection. Was I crazy? We are the same family whether at home or at Disney. The kids still fought, when we went to eat someone was always unhappy with the menu, one child (you can guess which) cried when it was her turn to sleep on the pull down bed, and after a day or 2 we all got tired and cranky....Perfection not achieved. I of course was disappointed. I wanted to make lasting HAPPY memories, for everyone. I hope when they look back they remember the trip on a whole, that we planned it for them, and not that there was the usual bickering.

Then, to make matters worse, after one dinner I wanted to go out and wait for the light parade and my husband wanted to sit a longer at dinner. So I went outside to get a spot alone. Then I texted him about how I was upset that no one was taking my feelings into account, after the difficult 2 years I have had and how this might be my last family vacation. He for some reason decided that my 15 year old needed to read this to see how upset I was. Now I needed to have the "are you dying" talk on vacation. Am I dying? Who knows, I hope Dr. Kemeny can fix me, I have had 10 rounds of chemo since june and I am hoping for a liver resection. But we also found out I am KRAS mutant with a BRAF mutation; and I have some "spots on my lungs and maybe a bone". BUt no, crying child, I am not planning on dying, I am too stubburn. I hope I am right.

So now I have a CT tomorrow and I see Dr. K wednesday to see what the next 8 weeks brings. I would love to be done with chemo and ready for surgery, For the lung and bone spots to be gone. To be able to eat and taste food without mouth sores, to be able to walk a flight of stairs without getting out of breath. But most of all I would like to be able to tell my children that after almost 2 years the cancer is GONE and I will be there for them whenever they need me.

Debbi

[justin case]

I'm sure in time, you will look back on this trip with fond memories, all of us parents do If your anything like my wife, you'll have your thumb on your husband forever
Regards,
Michael

[kiwiinoz]

Deb

Through the rose glasses of time your kids will be talking about the "great trip to Disney Land with Mum" for many, many years to come. You on the other hand will have to live with your fears and your memories, and hope that one day your kids never are in a position to understand what you are going through.

Good luck for the scans

Kiwi

[mymom]

We went with my mom last summer 8 weeks after she had her second liver resection and HAI pump put in. She was weak and could not make it an entire day although having her ride a scooter was a life saver (and she almost ran over a few people in between...seriously...people yelled at her). And there were five grandkids...all crying EXCEPT for my 7 week old baby. And there were meltdowns. And mom did a face plant over the line rope at the haunted house. But there were also a ton of good times. I am sure you all had a ton of good times as well.My mom had a blast. We ALL thought it was such a fantastic trip. And trust me when I say your kids had a blast. I remember being a teenager and everything was drama. I remember some of our best family vacation memories was when my sister and I were kicking the crap out of each other in the backseat on the drive from CT down to disney and my father pulling over.

Also, many funny articles have been written about "disney trips" and kids just melting down. It is very very overwhelming. Even for teenagers.

I guess what I am saying is that I am sure they had a blast. I do agree that sucks you had to have the dying talk on the vacation but the text probably should have not been shown. But Do not say this might have been your last trip. It very well may not be. I know, it is always in the back of my mind as well with each vacation with my mom but Mom has had three great vacations since being diagnosed and we are already talking summer 2014.

And do you know it is def something on bone? We thought there was something with my mom and it was nothing after she had the pet scan.

[bldblu_2]

Very strange you posted this today after we returned to our home in South Florida from Orlando around noon today. Where are you from? My stage IV husband and I debated (ok, argued) for many months about this. We were at MD Anderson in June at the Orlando satellite office and I refused SeaWorld because he was so weak. All worked out in the end I guess. He did take a 3 week break before the trip. We have done Disney before but one of his wishes was to take our 4 year old to SeaWorld.

[bldblu_2]

Please let us know how your scans go. Sending positive thoughts your way.

[Rob in PA]

Wow. I totally understand where you are coming from. The positives: Your family doesn't view you as someone who is on a death bed, so to speak. The down side, your husband and to a certain extent, your kids don't know how much this trip means to you.

They will cherish this trip in time.

Rob

[debzak]

I know they will remember this trip too, as I too remember all the fighting with my brother as part of what shaped my childhood. I also remember my mom yelling at us. And of course I hope it is not my last trip.

We did rent a scooter. I opted not to use it the first day we got there....I was afraid to run over a small child. But I was wiped after a just a few hours in the park. People really don't pay attention to where they are walking. It also helped us get fast passes for a few lines.

Ths was also my first trip with my ostomy...another fear, but it held out well. We didn't do any swimming though.

All in all it was a good trip and I hope things are more settled by this summer so we can travel again.

Debbi

[SurfCaster]

WDW is a superb choice for a memory making trip...Your kids will absolutely hold the trip as a special experience and memory, for many years to come.

Like most things in life, the advertisements for the "magic of Disney" and the promise of boundless happiness and joy really are a bogus veneer that ignores the reality and difficulty of everyday life. As you said, your family at WDW is the same family as at home, with all the good, bad and ugly that we all have as individuals and groups.

We often err in creating high expectations and idealization for ourselves and others, while the reality is that we are all simply flawed, mortal human beings.

[Guinevere]

Most likely they will remember the good stuff for the most part but your teen might remember "the talk". This is not necessarily a bad thing for either of you. This might help her see you as more than Mom but more as a human being that can be fragile. Maybe your husband could have picked a better time but it is what it is. My 11 year old (now 12 year old) nephew lived with us for little over a year. He was cognizant of the chemo and how sick it made me but he also saw me fighting to feel better. It made him a more considerate person. That's not a bad thing for a teen or tween to learn! I hope there were plenty of pics taken so that you guys can look at those and remember the fun and goofiness.

God bless ~
Guinevere

Oh yeah...the past three Thanksgivings and Christmases, I've thought it was probably my last one. For some reason, that's not my thoughts this year so far. We'll see as we get closer to those days as nothing has really changed for the better as far as the cancer goes.

[Badass]

Hi Deb,
I was quite moved by your post. Even without cancer, those issues of real life (especially with family) not matching the pictures in our head are I think painful and something we all wrestle with. Personally, I have found cancer a bit freeing in that regard- it might sound sappy but I think at least I am here to hear my children argue or to struggle with this diarrhea-- I am a living breathing fully conscious person having an experience. I find myself a bit more accepting of life's imperfections. At the same time, since I know that my time might be limited, or that my capacity to participate might shift, I think it is easy to become susceptible to the idea that I have to accomplish certain things or partake of certain delayed pleasures-- that can feel like pressure. I am not a bucket list kind of gal I guess. I agree with other posters here that it is not a bad thing that your children are aware that you have a life-threatening illness. The fine line is between their feeling they have to caretake versus they have room to talk about a hard reality and not have to pretend otherwise. I just saw a client of my own whose mother is facing double mastectomy tomorrow for Stage 4 cancer and the mother organized a trip to Disney World recently. This trip actually heightened my client's anxiety and depression because she felt all the sunny, Disney optimism was smothering her reality. I am sure your children (and even you) will look back with some fondness on the trip. And I hope you get to have a do-over too, of something mellower and manageable where everyone can go with the flow. Sending hugs to you. And really, really keeping my fingers crossed for you scans!!

Jane

[Rheaeliza]

Hey Deb,
Glad you got to take the trip! And that your ostomy held out. That's def. a fear for me in terms of future travel. I don't have kids, and can't imagine how you guys fight this cancer and are parents. Man people that are parents blow me away as it is, and as someone fighting this disease, well it seems all consuming. I don't know how you guys do both, so I guess, just, be kind to yourself. There are no handbooks for any of this that's for sure, and I'm sure your kids will look back on this trip as something wonderful as I do on all of our dysfunctional family vacations and camping trips of my youth!!!

[Hapa]

I read your post with a little amusement. I always glamorize our family vacations. Traveling with kids is such hard work. And lets face it, most family members bicker when they are tired etc. Even though there were minor glitches, that's not what will be remembered. Sounds like a great trip all in all.

[Kathryn in MN]

I'm sorry the trip was a bit of a letdown for you. But in the world of kids, I bet they talk about this trip for decades to come - with fond memories. Before my cancer we did a big family camping trip out west. The kids were 15, 12, 9 and 7. The two youngest really enjoyed themselves most of the time and were excited to get out of the van and see things - hike and climb rocks, etc. We went from Minnesota to the Badlands to the Black Hills, and all the parks and touristy things in the area. Then we headed to Devil's Tower and on up through Bear Tooth Pass. We went to a rodeo in Cody, WY and the girls wouldn't go with us - they stayed with the dog at the campground. We went to Yellowstone and it was amazing. The kids did their usual bickering. One daughter whined, "once you've seen one rock, you've seen them all." She hated being in the mountains. The other one loved the mountains and stopped being so whiny once we were in Yellowstone. They were disgusted by the cowboys out west.

After we got home, the VERY NEXT WEEK, it became "fashionable" to like country music and cowboys. And both girls got on a cowboy kick. And I overheard them talking with their friends about the totally awesome family trip we took out west. At the time they never admitted to us that they liked it. The one that wasn't a rock fan... she has been climbing mountains and hiking in them all over the world the last couple years! Now, more than 10 years later, they all remember that trip as one of the highlights of their childhood. They all share a big love of the outdoors and that trip was a big part of what got them more interested. Yours will remember your trip with fond memories too. They probably won't say anything in front of you for a while yet - but you might catch them talking happily with friends about it!

[jeanette57]

deb

the other side of the coin. I did a bucket list to ocean and yicks I had some odd things. One - my brother, wife, mother-in-law, my mom and me. It was odd that everyone watched me like a hawk. was I to warm, cold, tired, sick, how is ostomy. I got sick the first day and evey time I woke up in bed, a person was over me...yuck. "oh just checking if you were breathing". Now some times I enjoyed the attention, but others I could have flipped them off big time.....
No one would leave my side so feeling unwell had to go out to eat, or beach or any sight seeing. It did make me go to beach and million dollar home tour, but I would have liked to be by myself (to cry and feel sorry) but never allowed alone. Oh and it was the first for my mom, she would not allow me to shower without her there, so she got to see the stoma (freaked her out). Oh and my brother nearly gaged on the ostomy bag dump smell (when I put a new bag on and bagged the old). I had to walk the bag down to the trash.

My brother and wife said it was a good trip yesterday. If I want to go to the train trip they will take me...not sure if I can get up and down to do the eagle observation from train so will see how this holiday goes. After holiday and snow (yucky stuff) may call and get as much information as I can.

So Deb, both sides work and oh my god the teen and tweenie years are something else...oh my god you have some interesting years ahead of you. ---yes u do!