Tuesday, December 27, 2016

Such Generosity to be Blessed by...

...But as it has been told to me over and over, Nadine you would do the same for me. 

It has been an overwhelmingly powerful week. To the point that I’m not sure I could even sum it all up. Christmas Eve brunch was nice and then it was off to Eve Service at Northstar! Except we didn’t make it. I began feeling super groggy and needed to go home. I passed out the second we walked in the house until at least 4:30. We decided at 6:30 we needed food for Christmas morning and Kroger closes at 7. THAT was fun! We share a Wunderlist so we split up and me and the motorized cart got what we could in 10 minutes. It was funny actually. Thankfully in that time frame sweet friends invited us over for Eve dinner and I think we all had a super time. I was grateful this year to NOT have the Waffle House tradition and to just hang out with friends. There was one thing missing, candle light service at church. So we went home, and Madison played Silent Night on the piano and we lit tea lights from a candle I’ve had for YEARS that I’ve never burned and we did a little candle light vigil. We said our prayers and then it FINALLY began to feel like Christmas. And then stuck to the one tradition that Alana has reminded me about daily for the last week, our pajamas and Webkins! Yes, we have never missed a year. BUT never have we all had MATHCING Pj’s. Skip was absolutely NOT fond of my choice, but he endured them and it made me super happy!

The next morning we all got ready for the day, stayed in our jammies, then ran down to see what Santa had brought. Sadly Madison wasn’t as into it as I horribly made a mistake over the summer and she was shattered, but hey, made it to 13! Little Lana is still 9 and oh the giggling over the elves (and I must say Skip is SOOO good at moving them) just made the day. I got the do the last day and had a lot of fun with it.
Cocoa and Hope forever. We all had a fun morning, a very emotional day at times, some super cool unforgettable gifts, and lots of family fun, food, and laughs.

The next morning through noon we packed up for a week of Ellijay. I was worked. There is so much mind processing and packing and we had a car full of gifts for the farm! Dad made me two benches and two table/benches and if it had not been raining today we most definitely would have had them out. Instead Skip woke up to a planned bike ride with Steve, and then Stefanie showed up. They said Tucker wasn’t feeling well and off they went. I lay down happily while Alana beat a million levels of Harry Potter Lego PS4 and Madison enjoyed her fixed iPad. I just fidgeted to stay warm.

Then I hear this thud and more loud sounds and ask Madison if she hears that. She shook her head no, with a “mom is losing it look.” But then it got louder! She goes oh ya, theres a truck comeing up the drive and I thought maybe UPS. I decided to get up, and Steve was outside going, “you don’t see this” or something while Brandon Smith is in a giant bulldozer. I will be honest, my Christmas list was a pair of slippers, hiking sticks, and a list of things I wanted done in Ellijay. So when we drove up the driveway and looked around, none of them happened and I was a little disappointed. So I nearly cried, got out of pajamas and just goofy grinned. They’d pulled it off!! I had NO idea and it may have been the service of the century. Brandon flattened out the ruts and old concrete while Steve oversaw the gravel, THREE loads, with Jack, Tucker, Stef and Skip helping along the way! They even did the front yard, rid my life of Yukka plants, the lemon basil, the creeping ivy and all these annoying bushes! I’m hoping to have some back laborers to finish it up and make it perdy!! Eek. It was the most amazing thing ever! Skip and I drove the groundbreaking trip to the bottom, and I couldn’t hold it together, Brandon’s words set me off, realizing what they had all done, getting everything covered or donated, I’m just in awe.

I’ve struggled to hold it together multiple times this week. I know many cancer friends who are losing their battles or have lost ones they love to it this December, this year actually, and its made it hard. The last scan showing what it did in my brain has me pretty convinced I won’t make it to the end of the school year, much less to my daughter’s 14th birthday. So we are here again. The same fears, the same tears, and a miracle of a year was given to my family, on top of so much generosity, prayers, hope and a huge amount of positivity. Days like this make me forget how sick I really am. Everyone says I look so good, but I do! I mean… haha let me not get conceited but seriously, without the walker, a few wobbles and near falls, faulty memory (which everyone seems to understand), I’m fine.

I did have a moment today where I thought I felt my liver and that flips me out. My systemic has to continue to get better it’s only been 5 weeks on this drug. I have a feeling we won’t be on it long, but who knows, positivity right?? Live day to day, live present. These are all things I know and have brought me through the year, but it is SO hard not knowing what my brain is looking like. Just had another friend find out she is in my situation-ish in the brain and it broke my heart. Why do I know so may of us diagnosed with breast cancer in 2013, have full stage four two years later? It’s weird. Anyway, I’m shooting for an early scan at the end of my off week as my UNH nurse was pretty confident I could swing a 4 week approval scan. Just prey the little bastards are being blown up like firecrackers, some Harry Potter spell, some Saint intervention, talk to my tumors and cast them out. They are the enemy, my body is the Holy temple where the Spirit resides, cancer cannot stay in the name of Jesus, let me be healed.

To all again who were beyond generous this Christmas, you’ve been such a blessing to my family. We continue to pass it forward but youre now making it hard to keep up!! Of course you know I’m being silly, we cannot outgive God and are gracious for your love, prayers and kindness. Merry Christmas! Happy Holidays.


May peace be with you and yours.

Monday, December 19, 2016

Day 4 Xeloda - 10 days left


Is it really Monday?! December on the couch makes it fly by! Five days left to Christmas! Thankfully by the grace of God and the love of this community, I feel a little more better as Alana would say! That said I was released from
PT today, we shot another shot of Alana’s movie, and decorated gingerbread cookies. Well the kids did, we actually had a sleep over!!

I refreshed myself on iMovie after the kids went to bed and dude, it is hilarious. Now I’m ready to get her into that part of the movie, just need to hurry as every day is truly a new day and we never know what we are going to get!

Weekly Monday News:
No appointments until January.
No plan to check counts
Plan to find out what my blood work said last week.

Hope to stop by and donate toys to Must, see the Holly Springs Light show and watch Christmas Story because that is a must do!
Until tomorrow, enjoy today.

Sunday, December 18, 2016

Xeloda Day 3 - 11 Left

Day 3 and barely able to get up. A new side effect has shown up through the night with tremors in my right arm when I go to write or stretch for a glass of water. At lease its not a seizure, or maybe it is.

It is so hard to try to type and write these days. At first I was printing labels but then decided that was too much work. So if you get a Christmas card with an address that looks like a 3rd grader wrote it, no that was not Alana.

 I am pretty sure between all my sleeping the most fun parts were guiding Alana along for her movie project, talking to Madison about her boy drama and walking Skip through what ended up being an amazing dinner.

I had to laugh, when I went to bed last night it said I walked 32 steps and the 2 days before 95. I was very concerned until I realized its likely not picking up my sliding feet! I’m much to lazy to pick my actual foot up. I am sleeping a gooood 14 hours a day and there’s not much I can do about that. My body is tired.

Still praying the tumors are dying. I’m adding alternative supplements where I can but please don’t send more ideas. It can be overwhelming and ive likely tried it at some point. I really don’t have a good feeling about this so trying as hard as I can to stay close with God, the saints, family and friends and most of all positivity. Hard but not impossible.

Happy Sunday, no busy places for me. Will be watching online…

That took longer than expected! Chemo time!

Saturday, December 17, 2016

Just Stuff

What a blessing it was to have mom and warren up for a few days to watch the kids when we weren’t there and just take care of things. We even got to shop a little on what I knew was about to be my only good day.

Thursday was it. Out of 21 days on and off of xeloda I got one. They added more Keppra to hopefully relieve some focal seizures, prednisone to help with pain swelling, I even got glasses to help with eye strain on the computer and phone usage. Alana thinks I look old, I think they look fun. I cant tell the difference at the moment but we shall see.

Yesterday I slept most of the day away. Thankfully I can attribute that to the Zometa dose on Wednesday. I’m already freaking out. Growing brain tumors I technically have to gauge by pain and side effects until the next MRI in 8 weeks unless Dr. Simon can work some magic with my insurance.

One of my LM sisters called in hospice yesterday, one of strongest people I’ve ever had the privilege of having in sisterhood. She endured more than I ever cold have. May her passing onto her next life be peaceful. It hit me hard today because I cant help but think that I’m next. My body has been through so much already, how in God’s name am I going to fight off another round of brain tumors? Especially when they have NO idea hoe fast they are growing. 8 weeks is a mighty long time.

OH wait I know, the only thing I want for Christmas, from Dr Santa Kesari! (Isn’t it funny that his name is SANTosh?) http://www.nascentbiotech.com/products/ Pritumumab. I’ve always said Dr. K holds the miracle for whatever reason. Just hope I’m alive to get it.

For the firts time in 15 months I have a feeling my doctors know there is nothing they’ll be able to do. I know the liver and bone already look better, I can feel it, but every day my brain gets a little worse. Guess we can’t dwell on it though a guesstimmate prognosis would be nice. I like dates to shoot for. This time it’s “that’s an impossible question to answer since youhave already overcome so may odds…”

So my current hope is 8 weeks and I’d love to take the family to Paris. It was always a dreamy graduation gift so who knows. Maybe another Christmas. Maybe another summer in Sarasota. Maybe my dream pool in the backyard, but then I stop. None of that stuff really matters. Today matters, and I am thanking God for each one that I wake up to.

“The morning brings me hope of your unfailing love for I put my trust in you.” Some scripture in Psalms. Lol


God bless your day.

Wednesday, December 14, 2016

Results

Two more opinions and in less than 24 hours. Phew! That was a journey!! Now we have a multi doctor conclusion on how to continue treating this and killing it so I can see my babies graduate. The odds are not looking good scientifically but we know our God is bigger than odds. So.

The MRI didn't look good. One doctor always refers to bad news with preceding it with "if I were your sister..." I have swelling where we did SRA. We are tackling that with baby steroids and another round of 14 days on and 7 days off chemo. I have several new tumors in my brain and cerebellum area all tiny ranging from 2-5 mm. For now we hope that the timing was not enough to have a scan before Xeloda could work. We will be taking a closer look at my counts, markers and vitamins. She took enough blood today to fill a milk jug, okay maybe a coke bottle but just seeing it made me feel yuck.

I still have sores, a sore throat, no fever, and a rash that appears to be going away. They’ve upped my Keppra to help with the seizures and learned that I’m likely having focal seizures! Love when we learn something new!

We had a good day. I only cried once and that was when I gave Arion her cheese-it gift, and realized in the very room she started this journey as a killer awesome nurse and friend by my side. Gave Troy a gift and shocking, he had one for me, unicorn Christmas cards!!! Stop it, love my ACC family, Cumming and Tower. The funny part was that I got all the chemo nurses to go up to Skip and tell him happy 40th Birthday. Hehe. I think he will adjust soon!

So recap:
Pet scan from Nov. 21 worse liver and bones mets
MRI brain from yesterday had swelling around the radiated spot with clustering and several new tumors, tiny.
We will continue Xeloda 14 days on 7 days on unless side effects become unmanageable.
Upping seizure meds and adding baby dose of prednisone.
Not pretty, but I’m a woman who doesn’t quit.