I am diagnosed with a glioblastoma, grade 4. I've had surgery and radiation with oral chemo. I have also had 2 rounds of infused chemo, with nightly oral chemo. We have a short WDW vacation planned for Sept 9th. My neuro oncologist has allowed me to put off my next infusion for a week so it doesn't interfere with my vacation as long as my MRI (on Sept 7th) is stable. My tumor is in a "difficult" location (motor strip) and has basically paralyzed my left leg.
We have plane tickets (Southwest) and are planning on taking a wheelchair for the airport and resort use. We are renting a high backed
ECV offsite for the duration of our vacation. We are also renting a car (SUV). I have ADRs and FP+ made. We are staying at Beach Club.
Some days are really rough - fatigue, mobility issues, nausea. Some days are "ok". I use a walker at home and either a walker or wheelchair when we go out. We've been to WDW multiple times and just going at our pace is our current plan.
One of the side effects of my treatment is steroid induced weight gain (I've gained about 50 pounds) and I feel very unprepared as far as clothing goes. I'm not sure what to do.... I'm in a 3XL/24w. I have some jeans I wear around home, and I don't think I can risk bare skin - I can buy a couple pairs of pants - but where and what?
Same with a swim suit. I know I won't be able to "swim", but my DH and I could "relax" in the water a little bit - I think... I'm a little concerned over the chlorine.
Of course, the heat is also a concern. We have frog togs and cooling towels and we'll avoid direct, mid-day sun, but it will still be hot.
I'm very concerned about my mobility issues and transferring to some "rides". And, really, just getting around WDW. Overall, I'm getting more and more anxious about going, but I "want" to go and it will break my heart if we have to cancel.
I plan on trying to get a
DAS card - I have sensory issues (& will need some noise cancelling headphones) and "emotional" issues (when I feel trapped). Sigh. I hope I don't need it very often since we'll mostly do shows.
I will have my DH, DS16, mom (88), and sister (62) with me.
Any advice on how all this works is appreciated.