Tuesday, September 22, 2009

First Day After Rituxan

My niece Karen, Christian, their two children Ben and Miranda came down from PA, and my sister Kat (my sister and Karen's mom, lives in Jacksonville) drove down together and we met at Downtown Disney.  While Christian and Ben visited the Lego store, Miranda went to Bippity Boppity Bootique for a princess makeover, complete with a tiny tiara adorned bun, lipstick, nail polish, and magic sparkles all over!  It was a wonderful birthday for a 4-year old who loves being a princess.  I met up with the crew at T-Rex, a restaurant that sells humongous hamburgers for humongous prices!  Kat and I shared, plus we each had a soda, and our bill totalled $27, gratuity included.  Welcome to Disney! 
I have never seen Disney so empty!  Summer break is over and big kids are back in school, so the Magic Kingdom guests were locals, and couples with small children, or perhaps homeschooled kids like my grand niece and nephew.  The hot weather kept people away too.  Look at the pictures, barely anybody there!  We were still hot, but not nearly as hot as we were before it rained.  We arrived around noon and got to go into all the rides that we wanted to do. (Karen and her son pre-planned), and left at 7PM as the park closed for Not So Scary Halloween, a kid party for an additional cost.  It was beginning to rain as we left.
So the Disney day was on Tuesday, one day after I received Rituxan, a chemotherapy drug that should help reduce the  symptoms of rheumatoid arthritis, but according the the doctor,  "miraculously melts" non-hodgkins lymphoma, but since there's no cure for RA, I'll have to settle for what it can do for me, if it helps at all.  So, it's chemo, and I took it and I had plans the next day...Disney with my niece and her family and my sister Kat.   I didn't feel up to prime when I woke up Tuesday morning, and decided  I'd definately use a wheelchair.  I had a note from the oncologist's office stating that I was not to be standing in long lines or heat.  I showed my note to the customer service desk in the "City Hall" at the Magic Kingdom and was issued a red pass.  This special pass put all six of us first in line at all the attractions.   Just flash the magic card!
 I had a little bit of an upset stomach since the chemo.  My stomach doesn't hurt, and this continues.  I guess that's to be expected when you pump your system full of poison.  Monday, the first night, which was the night before Disney day, I didn't sleep well, feeling hot through my body core, a little agitated, and not sleepy, but exhausted all the same.  I guess you might call it an anxious feeling.  I'm guessing the anxiety is from the double dose of steroids I got.  The heat I felt was through the core of my body, down my legs and out of the soles of my feet.  I'm usually chilly at night and frozen feet are the norm.  It was totally different than a hormonal hot flash, maybe it was a fever? My skin was cool and  I didn't feel sweaty.  I was too tired to get up and check, much less to think about taking any medicine.  I gave up on sleep around 4AM,  and felt a little wobbly plus my large bones were somewhat uncomfortable.  Not tooth-ache painful, but there was surely something going on in the marrow of my bones, especially in my  legs,arms and hip bones.  It was not arthritic joint pain.  Hard to explain, but I knew walking all day would not be a good choice.  I felt a little tired too, maybe from a poor night's sleep, plus I noticed that I was fuzzy brained and slurring a little; a drunken-sober person!  
Kat likes to push, so she was in charge of my wheelchair.  Karen and Christian got a double stroller for their kids, ages almost 6 and almost 4.  They never did ride together, but if they got a single stroller,  both probably would have wanted to be in at the same time.  Normal kid stuff...  The children were fantastically well behaved.  I think they were the best kids in the whole park!  It was such a great day!!! 
The weather was incredibly hot and humid.  Within the first hour Kat started to feel a little woozy and nauseated and so she got a bottle of ice cold water, which was the cure.  It was surely because of the intense sun and heat, and we heard other people were feeling the same.  I was in a wheelchair, so I wasn't putting forth any effort -  like walking, but I was still roasting.  My doctor advised that I cover completely, so I had on a special wide-brimmed UV protective floppy hat and a UV summer long-sleeved shirt over an absorbent tank top, long pants, and tennis shoes.  I sprayed all my exposed skin with #50 sunblock.  I drank cold water, and was strolled around like a queen!  The clouds were dark and we finally got a quick rain around 2, nothing big, just some drizzle to run through, and this made a huge difference in the weather for the remainder of the day.  We rode the Brer  Rabbit water ride and we all got pretty drenched, which was terrifically refreshing.

Large crowds of costumed locals were arriving for the Halloween Party as we were leaving the park, and the skies opened once more to emit cooling rain. We were happy to be on our way out! Another stop at Downtown Disney to get my car, a Lego Land prize for the kids, and finally to grab a happy meal from McDonald's. I left in my car, and they headed back to Jacksonville in theirs, a 2-1/2 hour drive. It's only a half hour drive for me, but I had to stop off at Publix to pick up a prescription. I was home, showered and asleep by 9.

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