Monday, December 14, 2015

Skip's Bday Weekend

I wrote this in the care on the way home from Ellijay:

What an amazing weekend, an amazing week. I woke up this morning to a fully pink sky. It was so beautiful I jumped out of bed and ran outside. It’s so peaceful here. You can hear little animals and the stream and it was even warm. I sat by the lake just thanking God so much for another day and for the strength and power I’ve felt this week. I know it’s an up season and that this season could last another week, or could last another year, but just like everything else, none of us are guaranteed tomorrow. So why not live like it?!

This week I hope to start my by mouth treatment and maintenance drugs. They come with a full set of side effects, so I guess it’ll be a wait and see thing. I also had this horrid pain about a week ago, thinking it was a Charlie horse in my abs, but I’m still having pain there so going to see if we can investigate tomorrow. There seems to be a little bump there – maybe even one of those pesky lymph nodes. Regardless, knowing how high my pain tolerance is, I won’t mess around this time.

Get my fifteenth intrathecal chemo tomorrow! That puts me at 3/6 for this second phase. January 4th will be my last weekly dose then we skip the 11th and do the following Monday the 18th. It’ll be twice a month for four months! I’m at 9 weeks on Topotecan, 5 more to the 14 week mark!!! Getting closer and so hopeful this will work! Not sure when they test the fluids again, but I’m patiently waiting and honestly hoping they don’t test it until after the holidays and our first post-chemo vacation! Yes, we are going to Panama City for New Years compliments of one of our beautifully sweet friends. Such a gift!! And, we have a bunch of our NYC family coming for Christmas and I’m jumping out of my skin with excitement.

Still doing my best to be organic, vegetarian, mostly gluten and dairy free, and it feels SO good. My body has adjusted beautifully and honestly I enjoy cooking so it’s been a lot of fun! Hoping to get an alkaline water filter put in soon because we are going to do just about everything to hold this nasty disease at bay!

Finally, I want to thank EVERYONE for their prayers, support, gifts, love, and friendship. I made a promise to God in the car on the way to the ER on 9/9 that I would climb to the highest mountain top and I would scream out my praise to God if God would bring us through this. Skip said he would too. Well the coolest thing happened when I went to shuttle the birthday riders to the overlook. When we parked I saw theis woman pass my car and climb up this trail. What?!! I’ve been here a hundred times and didn’t realize there was an ACTUAL overlook! I ran out of the car, and nearly ran up the mountain. Huffing and puffing I made it to my mountain top and I screamed! I was so thankful! We jumped up and the woman there took our picture and then we screamed up to the heavens! I closed my eyes, thank you God. Hugged my people and shared one of the most beautiful moments of my life. So very blessed by all the people that came this weekend. Skip and I cannot stop talking about how amazing it was. How it ended up just being the most perfect day and the group of people we got to share it with were some of the most generous loving supportive people we know. Can’t stop being blown away at the love we continue to receive. We feel so loved and so blessed.
Almost forgot my other energizer bunny moment! We got to the house around 9:00 or so, and turned on the State Championships for Allatoona High school. It was zero to zero and half time. See, I’m a Sequoyah mama but our Pastor is a coach for their team and we do weekly posters together for them for around 2 years now. When all of this started Mike had sent me a picture of his team praying, and they were praying for me. Since then they’ve prayed every week and Saturday night I had the complete joy of praying for these sweet boys. We prayed and the third quarter began. I was jumping, screaming, fist pumping, dancing, spinning, you name it I was a psycho football fan and I’ll tell you when they won, I think the people on TV may have heard us. My parents got to catch the end with us as well, and it was just one of my most favorite moments. Found out from Facebook they were all going to be at NorthStar this morning and was soooo disappointed I wouldn’t be there!! Skip wanted to spend the weekend chilling so we are watching this weekend. Still hope to make a field trip to meet these boys in person and see the posters that line the halls of their school. I hope I get to do them again next year.

First for me this weekend, I drove the dune buggy and it was AWESOME. I’ve been so hesitant and fragile, but I literally jumped in that thing and smilling ear to ear me and mom took off and it was a blast. We laughed the entire way around, and up and down.

I’m sure there were more pretty firsts, but those are the ones I can remember for now. On our way home and the fun will continue, because it’s Skip’s 39th Birthday WEEKEND. Yep. The entire weekend is filled with fun…

Off I go! I’ll be in touch soon. Love and hugs to all! Thankging God for my team of amazing people.


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