The only regret I have about our trip is that we didn't take it sooner. Our family (and I mean my whole family: parents, grandparents, Heather, Allen and their two boys) were in desperate need of vacation, of some sun, relaxation and quality time to come together and bond by having fun, not bond because they've all gotten frantic phone calls saying I've taken some terrible turn for the worse..
So Hooray for a vaca so badly needed and overdue!
With my hindsighht 20/20 vision, we should have done this earlier, even just two weeks earlier, I would have been in better shape.
But who can ever predict when my cancer will return?
If you're out there, I'd like to speak with you NOW, I'm willing to try just about anything.
Due to my spreading disease and recovering from my pneumonia last week, I did have some rough days. We arrived Sat. And the Wellingtons were out havin arrived a day early.
They were at magic kingdom so we said "what the hell!" And joined them for a few fun rides.
Realizing I tried but couldn't hang, we cut out by 11, and Sunday being a little rainy, I took it to rest while everybody was playing. They all went to MGM studios while I slept and slept, a sleep that only a cancer patient understands.
I did rally for the afternoon.
It was a little heartbreaking having to stay in but I had the rest if the week.
Mon. and Tues. we went full throttle through Animal Kingdom, Epcot, and Magic.
The package included 7 day park-hopper passes, which we didn't intend on using, because I wanted to go to Universal Studios, but life happens for a reason, I was too exhausted to think of running outside the Disney area, actually, I didn't run all week.
I stuck straight to my wheelchair with some outings for exercise. I had to conserve that energy. The worst part of the cancer itself is the extreme, overwhelming fatigue. I can fall asleep anytime anywhere. Alongside that comes pain popping up who knows where from my inner space being hijacked, but I got my game face on.
The best thing I've done, that anybody can do with a life threatening diagnosis is to keep living. Do not stop, and cry, and isolate yourself. Do not give up the people, the hobbies and practices you love. When the disease becomes to much and you have to sacrifice something you love, grieve and move on. Find something else that suites your new abilities.
It is important to grieve. It's important to feel bad for yourself, but it's also important to limit these emotions so they don't rule your life. This way you can keep on living. You are living and your disease is a backdrop.
On Weds, our big day, Xander's birthday, even he was a little worn out. HE voted to go to Epcot of all places, because there he and dad could engineer their own roller coaster and ride in a simulator! I can't believe how much he's grown up. He wanted to go through the ride that allowed you to pick options to change your future. He wanted to go on the dinosaur ride that told you all about their past. HE was so much fun.
Then, shockingly, at 2 pm, he wanted out of the theme parks and back to the hotel for relax, pool, and family time.
When I originally told him we were taking this trip I told him we "were going to the happiest place on earth."
HE looked at my funny and said, "Where's that?"
"Disney, silly." I told him playfully, but sensing his disagreement I had to ask "Why, where is your happiest place on earth?"
"Home." He said matter-of-factly, with a shrug and ran off to play.
That comment won him serious brownie points, I felt like I'd won a million dollars, like I was a superstar mom.
And really, he seemed to enjoy the low key days when we weren't rushing between rides, when we were just hanging out with everybody together, but of course, he enjoyed the rushing days too.
It's taken me 5 days to write this between all the travel, the fatigue, and my impending treatment today, but I couldn't leave you all hanging.
I am supposed to start my bendamycin today. I think my GVHD has come back a little. I have some geographic tongue going on. I also hear rhonchi in he upper lobes of my lungs. I'm calling to ask for a CXR before treatment. I definately have a little sinus infetion, but we'll see what plays out.
I'm nervous starting this new treatment. I think everybody gets nervous with the start of something new and unknown. I'll be needing extra prayers this week. I'm scared of going back to where I can only lie on the couch and sleep, contributing very little. I worry of being a burden to my family. X all ready has serious anxiety. He's saving all his money for a cell phone that he could use in emergencies.
At first, we said absolutely not, why would any 8 year old need a cell phone, but after his very eloquent explanation explaining how he fears something could happen to me and he wouldn't know. The idea is on the table.
Thank you to all who continue to support me.
And we're leaving off with some good news for NH patients like me, the vote on HB 440, Requiring that New Hampshire join the lawsuit challenging federal health care reform legislation, and repealing the authority for state implementation of federal health care reform has been postponed until next year!
Hooray, thank you health care warriors!
And surprise, surprise, I'm working on filming a thank-you piece for The American Cancer Society tomorrow during my infusion (Yes, this chemo requires two days of infusions). I'm a little nervous filming the day after treatment. My dad is joining me as my "edit button," in case I start to let out something that should not be told. We'll see what happens. Pray that these works will make a difference and that no one will ever have to suffer like me.