Good Days are Such Blessings

Today started with a surprise visit from my mom and Isla! I was so excited!! We went and ran errands at the bank and CVS and then ate Chick fil A for lunch.  She got some energy back and played so happily on the playground with the other kids. We did more shopping at Target and I didn’t even use a motorized scooter! Just the walker and got a few more buckets to organize Alana’s new room. I’m confident that she has more Barbies than people I had at my birthday party. They are overflowing from a HUGE Tupperware bin. Plus a bin of nothing but clothes and tiny stuff, another of furniture, not to mention 3 cars, two little homes, a cruise ship and a Barbie dreamhouse. I guess 8 years of obsession with Barbies, that is how its done. I’m just hoping with bins labeled and ALL the sorting me and my mom did, this child can keep her room clean. Hope.

Isla decided she was ready to go to nanny’s house when I scolded her and popped her booty for punching me. Oh no, that does not fly with me. It was instantly, “I wanna go to nanny’s house.” Which you almost have to giggle, because really in like 5 minutes I looked straight into her eyes, said, “I love you” and she said it back with no hesitation. It has been a while since she has done that and it MADE my day.

And then my Lana Bear and Madison came home and there was peace. No whining, no arguing, just giggles from Alana watching her computer in a little fort she made, Madison and I crafting her homework and then friends over for dinner. Honestly it was a good day. It was so good that I did physical therapy exersizes ON MY OWN! That is huge. Madison and Skip discovered that my balance did improve after playing a week’s worth of wii balance games. I hope to get the power point. She did SUCH a good job!

Well that is it. I got a ton of refills, unpatiently awaiting the brain MRI and am getting the run around on getting my 4 week cytology drawn. May mean a trip to the West Coast! Have to amazing people I need to see if so. Jim my only LM brother (2 year survivor currently NED!) and my Brittany (Struggling with the fight of her life). Plus, I love seeing Minh and Dr. Kesari so who knows, maybe it’s time. Technically I need to see Dean Collins too, just not sure how to get around so much of the state unless we make it a family vacation! Haha. Never know I guess. The kids just want a selfie in front of the Hollywood sign and they’ll be good.

Well that is it for now. I can’t harass my poor husband any more about taking down Christmas from the attic, work is beyond stressing him out. A good episode of Colbert or Noah doesn’t even distract him enough. So if there are any strong guys up for the challenge I think he would appreciate the help – as long as no one falls through the ceiling. Hehe.

Off to bed. Just had at least 30 hugs from Alana and a quite deep conversation about cancer. Shestarted it with, “Well mom, you know, if we knew what caused the cancer, couldn’t we then reverse it?” she’s my brilliant one. We talked about DNA strands and mutations, and a whole bunch of stuff I cannot remember, and then it came. “So does that mean I’m going to get cancer too?If it can be passed down by your parents?” I never EVER wanted to hear that question but I answered honestly. “yes.” When you are 18 you can choose if you want your DNA to be tested so you will know and have early screening and tests to catch it early. But we hope you don’t. “ and she said, “and Madison either.” I don’t know where she gets her geniusness from, oh wait, that’s from Skip, but it blows me away each time she goes on a rant like tonight. Whatever she does in life will be life changing, that I know for sure.

It's Been A While, Like two weeks

Another partial seizure, lots of tears and the phone call to say my new drug has been approved. It’s bittersweet. Part of me the other night felt the seizure coming on. My eyes were jumping all over the place and I sat there and actually debated on taking my medications. I thought, well, here’s an opportunity to possibly let it kill me. But my goal is Christmas and seizures hurt pretty badly, so I chose the fight it route. I cried and cried until it was gone then cried more.

I’m paralleling the life of a dear friend of mine. She understands the down a bit more than I as the bones in her body are much worse. She wakes up ready to give up because it hurts too bad to get up, so for both of us I whisper every morning, “Thank you God for another day.” Because I know where she is at. I know the anger that seems to be on a cycle, that just leaves you wanting to hit something. She asked if we could throw plates. I so wish we didn’t live on opposite ends of the country, we have an awesome plate throwing team here! HAHA!

Anyway, I bring up my friend because I’m grinning ear to ear. Me and some core peeps decided to make Christmas a reality for them this year. We are going all out and I’m tickled. We are going to send so much love that I think the walls might explode with hope and joy! We love you Brittany Black and Family! Keep being strong!

This week I took being strong to the stupid level. I cant walk 2 feet without losing my balance, literally we tested it for a science project, yet I’m bound and determined to hike my property. The weather was delicious! Perfect fall air and I was going to climb the trail. Two hiking sticks and Madison taking spot duty, we stopped and went. You know, I should have Strava’d it! I got to the Old Moonshine Sill and popped onto the ground. I just soaked it all in while people went exploring. It’s our favorite Ellijay season. Free-hike, no snakes, and the beauty of fall was more vibrant than I would’ve imagined!

I decided I wanted to head back, but no one was around so I scooched like 20 feet on my butt. Skip was like, “uh, baby, where do you think you’re going?” Down the mountain. He and the tree helped me up, and we hobbled down the mountain! What I didn’t expect was the pain that would be in my stomach and chest for the next 4 days. I swore I ruptured something or messed up. Kicking myself my mom drove me all the way to Woodstock to see my PCP. He was even concerned but in the end, all was well and we now know what overdoing it really does. CHEESE!

Thanksgiving was lovely, with family and friends and more food than one could comprehend. I think we ate turkey and ham for 4 days! We stayed up through Saturday and came home well before dinner. We spent the rest of the weekend finishing Alana’s new room and took a day to chill.

I started Xeloda Saturday and so far so good. Maybe a little fatigue but that’s it really. I did finally get the PET results from the PCP since no one EVER called to share that little tid bit of information. So me and Dirk read them together. Basically everything was 50% worse. Two centimeter lesions were 4, on top of new ones in the liver and bones. I’m not sure what the wording was in the brain and totally forgot until just now to clarify with Dr. Simon or Kesari. So we were glad to get Xeloda and soon behind will be Opdivo. I get a brain MRI December 14, Skips 40^th birthday which I’m sure he will appreciate driving me all over town. Haha. And then the year is up! And do you know what that means besides hitting new deductibles?!? I’ve made it to another Christmas. TWO! So even though I want a pool for Christmas and a few little things (okay a lot of big things done in Ellijay) All I really want is for everyone to be together, happy, laughing and making memories.

This year has been especially rough on the kids, especially bratty teenagers. I’m sure if half of the kids knew what Madison had to deal with they’d love on her instead of causing more drama in her life. They take it home and bicker and whine. So my Christmas wish is that for two weeks my house is magically stress free. That we give much more than we receive as it is our turn to pay it forward! Our prayer warriors have helped us get this far, our clean team, our cooks, drivers, and last minute call upon angels… may your December be magical as well. Jesus was born so he could lead us to eternity, to have hope in a future beyond understanding. Pray with #teamnadine for the miracle of healing. It IS possible, I have hope again.

Weekly Monday News

Today there is a change in the wind…

Bye bye Alimta-Carbo, hello to Xeloda. We have to take a class on Xeloda and she is hoping to have me on it by end of day. Liver enzymes actually went down a little but pain in the area started back up today. Probably angry at the 3 pieces of amazing pizza I ate in 30 seconds last night! We will continue with Zometa which we decided to have today so we wouldn’t have to come back this week. Unfortunately my PET scan falls on break, but with all the wild fires in North Georgia we aren’t sure we could even go up there. Skip is highly allergic to smoke, so a change in winds could cause for a disaster. He is already fighting it here with the cloud over the area. Continuing steroid for the week, and my altering my seizure meds didn’t seem to phase her, I guess she knows me by now. We were all pretty shocked to realize we had just passed the 14^th month mark. Gotta keep pushing, but it’s always scary to switch a drug. She is also going to put me on an anti-estrogen drug. There is conflicting studies done with combining it with Xeloda, but she feels like it won’t hurt. My tumor markers went up substantially and have went over the 200 mark. That freaks me out. Now it’s time to pray this works, and fast. Having an aggressive cancer is nothing to wait on or mess around with. Please let this work.

Alana’s 9^th birthday wiped me out but so worth the 4 months of planning. She had so much fun. I even tried being a snitch aimlessly running around like a blind person. Lol. This morning is a bit difficult. Feel like my eyes are jittering and my body feels weird. Maybe I’ll just contribute it to “overdoing it.”

Thank you all for everything. Keep up the big prayers for healing and I’ll try to keep in touch. I sleep a lot more now and not good at remembering anything, but I thank you. From all the birthday gifts, to the meals every night, to the prayers and love from everyone, we truly live in one of the greatest, kindest communities ever!

Stereotactic Radiation Thursday at 11AM

My soul finds rest in God alone, my salvation comes from him. He alone is my rock and salvation, he is my fortress I will never be shaken.

Rejoice! Rejoice in the Lord! Do not be anxious about anything, but with thanksgiving, prayer and petition, make your requests to God and the peace of God that transcends all understanding will guard you hearts and minds in Christ Jesus.

May the morning bring you hope of his unfailing love for I put my trust in you.

Just a few of the scriptures that came to mind the other morning as I lay in bed. I had tried so hard to memorize some scriptures the day before, but I cannot. So I started remembering oldies, but goodies.

I had another seizure. My shoulder still hurts for the violent tremor that went all the way up my arm to my shoulder. Thankfully Madison was in the room and she Ativan to me in 3 seconds. I ended up sleeping on the floor that evening and the next two days were spent laying on the couch. I’m pretty sure I had a seizure again, Monday morning as I could not even walk. It seems to enhance the wobble effect, and day two after I can’t get off the couch.

I cannot help but think about tomorrow’s radiation treatment. Will it work? Are the tumors still there? Have the gotten bigger? Will I go into a seizure during the treatment? Will I get life threatening swelling? Will my brain damage get worse? Will it get better? So many fears to give to God and not worry. Will it cure me? We need change, we need a break.

Tomorrow Madison is performing in the talent show, she is quite nervous, and I pray for those jitters, and I pray the side effects of the radiation are uneventful so I may see her. I so desperately want to see her perform her own song. It is precious.

Theres so much happening, and so much I’m forgetting. Bless you all who drive me around, bring me chick fil a cravings, make us dinner almost every night, pick up the kids, bring us juice and oils, who send a bazillion prayers and love from across the world. I could not be more thankful. For my team of doctors who I know will not let me down. My hope is in God and his mercies which are new everyday. I tell myself to B Strong. B Courageous. B brave.

<3

A Team

When I think of the word team, I think of caring, working together, positivity, goals, and building one another up. I was on many teams in high school but I just don’t remember anyone on them acting like any one of us was better than the other. You try your best, and cheer one another on.

For me and teamnadine that gets a little warped because it’s centered around one person, me. You would not believe this, but I was super shy. I cried all the time. I was thinking recently about a girl I did not like at the time who yelled across during P.E. “why do you always cry, does your dad beat you or something?” I wished I would never see her again. Teamnadine was meant to encourage me, but also for an opportunity to spread my hope and love to others. So it’s just a different kind of team, but we are still out to win, pray and find others that need it too.

Then there are the teams I help with as a mom. I’ve coached and did it with the same goal, encourage these girls to do it, don’t give up, stay strong and be confident. Nobody is perfect at this, I’ll be the first to admit that! It is hard work to be the leader of a team, organize the chaos and bring everyone together.

I’ve also been a sideline mom. Being sick has shown me it’s okay to say yes to carpooling even though you can’t do it. It’s made me stronger and has pulled me off the couch wondering if it is the last game I’ll see. Being a sideline mom, can’t volunteer, can’t take as many pictures and cant make cheer album or spirit sticks for everyone on the team – breaks my heart. I’m making Madison’s through 12^th grade in case she makes it all the way through high school, her hope and dream.

Until yesterday, Halloween.

Let me tell you a story about how not to treat your team mates. You do not wait until the last game of the season to openly start talking bad about them or say mean things to their face. You should be there for your team off season as well as on. Do not be on a team for popularity reasons. You choose a team because you love your sport and you want to be part of something that will bring excitement and encouragement to everyone involved. Bad days are hard enough, messing up doesn’t mean you’re a failure, and you shouldn’t have to make excuses. A team is a team, not a bunch of little teams encapsulated into one.

Let me tell you a story. Our family thought it would be fun to shop this weekend for Halloween stuff. Typical webbing, a few cute Halloween headbands, and some other fun yard stuff. We’ve never been too big on Halloween, but now every day counts bigger than before. She got ready for school and was stunning. She did exotic make up to “dress up” for Halloween without meeting the criteria for “you can’t dress up at school on Halloween.” When she walked in people stared at her in disgust, rolled eyes, couple of smiles and then people she knew, team mates, broke her heart. “Oh baby, noooo,” was the nicest of the insults to others I cannot remember to the ultimate, “there’s nothing that’s ever gonna help you girl.” To where she ran off crying scrubbing her sensitive face with school soap and hot water, bawling. Other “friends” in the bathroom ignored her and went on with their days and their problems, leaving her confidence in the toilet.

When she got to class a sweet boy from her team looked over and asked why she was so upset. When she explained, he said that he thought she looked really good. Isn’t that funny. Is it jealousy? Lack of compassion? A desire to pick on people not as bold as you think you are? I’ve grown up. I’m not that shy, immature, unconfident girl anymore. Teaching it is hard and the damage that is done is done. Being a teenager is hard. Being a teenager who just became the most confident since elementary school, who finally stood up for what is right, was crushed. In the middle of all our family has been through, the amount of stress our life gives us daily, right after I have to tell my kids I have brain tumors and we cry, the last thing we need are mean team mates.

I felt the need to write this, not to single anyone out, or have the coaches ask for names because that only makes things worse. I wrote it because I want to raise our children to be strong and kind. To be positive even when it looks like the rain will never end. When a team is beating you 30 to nothing, that you can still cheer them on and give them hope. Team Nadine has shown me that for sure. When I’m feeling like I give up, I can’t because this team gives me hope. This team is why I’m here today. Let’s teach our children to be those friends, those teams.

Please do not pry or ask us who the children were. Lips are sealed.