Fun Friday!

Two days of uptastic! It’s not like I can go jog a mile or anything, but at least I don’t have the overwhelming funk feeling that makes me want to pass out at any moment! I even walked to the bus stop today. May have been a weeeee bit out of my scope of “things I should not attempt” but it was nice to get out. My pelvis is on mad fire and my liver has been unhappy for days, but all is well considering!! I've been way worse... I also watched skip trim the bushes on the hill from the hammock which was hard because I love to do that stuff, but then again SO awesome, because I didn’t have to do that stuff!! HAHA!

I had my fifth intrathecal chemo today and went in with a WAY better attitude this go around. I had actually looked forward to it because it was deemed “Fun Friday” by Troy (the best oncology nurse next to Carmen ever) and when I walked in the girl was like, “ooooh, this is awesome.” Apparently we had on matching super hero outfits!! We had so much fun, lots of other people were smiling at our total weirdness and overall, just a good visit. Oh, and Dr. May decided to send off the fluid for results! SOOOO praying this stuff is squishing it all! Can't wait to see it worked! Should be Tuesday. 

Next week my Kelly May is not going to be here and that makes me a little nervous. She said she drilled the other doctor which made me happy and she said she trusted her. Then I hear a story about her coming from Emory too! So really, I don’t have anything to worry about, just not so awesome with change. Part of me wants to pack up in Dr. May’s suitcase and travel to nice warm Florida with her!! I can do IT chemo at the beach!! For sure! ;)

I received the results from the renal ultrasound. She starts with your kidneys look great (which I must say is an absolute SHOCKER since only 3 weeks ago I had "severe nephrosis of the right kidney that needed immediate attention." Praise GOD that has resolved!! Which also means whatever was blocking it has shrunk enough to not push on the stent! wohoo!) So I responded, “but my bladder is jacked?” She laughed. She told me the lining was definitely thickened showing inflammation. So I’m following up with my NEW urologist (Dr. whoever was totally fired when he told me my pain could NOT be kidney pain) and I hear she is the bestest!!

I did look up out of curiosity the possibility of the cancer having spread to my bladder. I read that in a 2014 article it was so rare only 40 cases had been presented in so many years. Like so rare that I started hysterically laughing thinking well then, for sure, I have that too. I probably don’t and they’re pretty sure it’s the Cytoxan chemo and have a plan, but it did give me a weird kind of belly rolling laugh.

I finally called LiveStrong yesterday to get myself in the system. They have a few programs like nurse advice and patient pairing. I guess I’m on the hunt for a LM survivor other than Valerie, though I am feeling like I MUST meet her! I would love to hear more about what she has done and her story. Anyway, I thought that would make some of my LiveStrong peeps happy. (Steve Kibler/#24hob, you were my referral. XO)

So it’s Friday night, we just did a family grocery run which was awesome fun in my mommy stroller and we stocked up for our annual Halloween Chili/Cornbread Casserole night!! I’m so excited I can hardly stand it! Madison has a playoffs game to cheer for tomorrow, and though I’m a little said, I am knowing I shouldn’t make it. It’s a long drive to get there, long game, and long drive home. I’d be wiped for Halloween. So, she’s cool, and I’ll stay home with Alana and have some A&M time!

Other than that, I think we are good. We had some fabulous help this week as always. Good food, momma is the best help getting our girls off to school on early chemo days and lots of notes of prayer, support and love. We have been blessed in ALL areas of our lives and I cannot tell you all how grateful we are.

I’m super wiped out and looking forward to good sleep. Good night to all! May peace be with you all as you read this, and know I love you!

³³ I have told you this, so that you might have peace in your hearts because of me. While you are in the world, you will have to suffer. But cheer up! I have defeated the world. John 16:33 (CEV)

I came across this verse tonight while getting ready for bed and had a thought. Jesus has overcome the world just as he has overcome cancer… listen to this… we can fill in the blank with whatever we are facing today. May not be cancer, but we all have blanks we can fill! Let Jesus fill you with peace as he makes his promises that he has overcome it all.

³³ I have told you this, so that you might have peace in your hearts because of me. While you are in the cancer battle, you will have to suffer. But cheer up! I have defeated the cancer. (John 16:33 Totally made up my own version)

Late Weekly Monday Update 10/29

I'm soooo sorry!!! I've been so behind on blogging that I didn't even get in my Monday Weekly News Update! Probably shows how sick I've been when I'm not as eager to blog and update. It's definitely been a really hard week physically. I've tried to explain it to a few people but it's an overall horrible feeling I just can't wrap my head around. 

The last 24 hours I've definitely gotten some energy back. About an hour or so here and there. Which I'll take!! This morning I helped get kids off to schoo, made a couple of egg m muffins and then went back to bed. It probably helps that I slept amazingly after a couple of rough nights!

So my weekly update! We are waiting at NorthSide Holly Springs to get an ultrasound of the bladder and kidneys. My urine culture is negative for infection so the fact I'm peeing kool-aid with zero pain has everyone scratching their heads. They think it's a side effect of cytoxin and we will try a drug next time I get it to protect the bladder if all this shows everyththing is fine. 

I might try to see if I can get her to hover over my liver for a minute. So freaking curious!!! Everyone is. PET scan will be done after the fourth cycle of AC to check disease progression. I'm hoping they look and go what!!?? It's not there!! I know my stomach feels SO much better than when this started, I also know I'm still on the intestinal blockage diet 75% of the time. 

Second IT chemo is Friday. For whatever reason I was uber anxious going into number four. I was uber sick feeling and just didn't want to. That's been really the last week. But like I said, the last 24 hours funk fled and joy settled.

I posted a video of Valerie Harper who has survived leptomeningeal carcinomatosis for two years now. Her interview is powerful and I'm not sure if it was just knowing some one was out there or if I really just did snap out of this nasty sick feeling but I felt an energy I had not felt in a long time. 

I also got a phone call from Dr Booser at MD Anderson and we chatted for a while. Im no less alone in this. He hasn't had a case personally in a very very long time. He said some of his colleagues have. They don't always use Topotecan but the side effects should be minimal. He seemed like it would stop progression. There was no negative thinking there which made me positive. He also said he really liked Dr May and felt I was in good hands here. That's pretty huge. He gave me his personal email and to keep him posted. I feel humbled and thankful for this team God gave us. All along he's cherry picked the best for us. He's always picking the best for us… Even you. 

Today's bible verse was:

God is not unjust; he will not forget your work and the love you have shown him as you have helped his people and continue to help them. We want each of you to show this same diligence to the very end, so that what you hope for may be fully realized. (Hebrews 6:10-11 NIV)

I can't stop thinking about all the people praying for us. Through this you have shown so much diligence. More faith than I can even comprehend. Thank you for lifting me and my family so often and helping us realize our hope. Lifting us out of dark places and physically painful moments. Thank you for praying for our doctors and nurses. For our finances. So many of you have supported us non stop giving us time to just be a family. 

The Adventures of Taylor Swift

Our adventure to Taylor Swift began a little after 3:00. Madison and Ella had been planning on meeting for dinner prior to the show FOR EVER so we buckled up and decided to go to Ted’s. I awoke this particular morning dry heaving and nauseated beyond belief. It had been by far the worst day on chemo yet. My head was cloudy, I felt terrible and all I could think was I’m not sure how I’m going to get through this, but I’m going to try. I want to see those girls eyes light up when Taylor Swift comes on stage!! It was motivation.

We ended up parking at the ferris wheel and Skip wheeled me in my new mommy stroller (which might be the coolest, most comfortable thing ever) over to the dome. We snapped a few cute pictures and then in we went. We were pretty high up but we had such an awesome view of everything. Everyone was excited in anticipation!! I laid my head on Skip when I could and reserved as much energy as humanly possible for the show. I didn’t realize how hard of a struggle it would be just to sit there. It was.

The openers came on, and yes, I said openers plural. She had two. Well, by the time the second one finished it had been over an hour and a half and every time they changed his guitar, Alana was like, “another one!!??” She was fading, and to be honest, I was too. Enough already, we are here to see Taylor!! Finally after almost two hours, Taylor Swift knocks it open and with one of Alana’s favorite songs, Welcome to NY! I look over in great anticipation and… she’s glazed over!?!? No!!!! I got a few smiles out of her, and a couple of lyrics, but overall, she was done. I was heartbroken! The one who was by far MOST excited, had nothing left. No second wind. Just put in some ear plugs in and she slept on Skip literally the entire show.

Madison was adorable. I could tell she was so into the music. She appreciates it more than going wild and dancing, she just loves it. She absorbs it, knows every word to every song, singing at the top of her lungs. She had a permanent smile and her eyes full of happy. She would elbow me and we would sing lyrics together and I just treasured the moments of being able to be at my daughter’s first concert.

So, I may not have gotten the reactions that I was expecting, but I guess in a way, I’m the nutty one who would be jumping up and down screaming like a little kid and they didn’t have that to feed off of. Which part of me is sad about, but then the majority of me knows the effort it took just to be there. The energy it took just to physically sit in those seats for that long. And that I know was a blessing. To just be there when everything in me said I shouldn’t be. I got to be with my girls at Taylor Swift and though we weren’t jumping and dancing (okay we were at the last song, there was no containing ourselves to Shake it Off) it was an adventure I’ll treasure, and hope they’ll treasure forever.

Skip on the other hand, probably views this night as the hardest night of his life. He pushed me across town, Alana slept on him the entire show, and then when we left we got lost and I’m pretty sure he pushed me and Alana up and down ramps and all around the dome maybe two or three times before figuring out where to get out. It was close to midnight and traffic was ugly and all I know is that I took meds and crawled onto the bench seat in the back of the car, and crashed. He got us home and everyone in bed and then turned around this morning to go meet with some guys at the church about financial planning.  I’m not sure he understands quite how grateful I am, but he is my rock star. We don’t need any concerts or famous people, really, I just need Skip’s autograph, because he is seriously amazing and love him more than he will ever know.

I know a ton of people prayed for us to make it last night. Thank you. 

Three Down & Yuck

Yesterday I woke up not wanting to go to chemo. Another cerebral infusion and the last one made me so tired. It was early and Skip gently persuaded me out of bed. I got in some cozy clothes and off we went.

To be honest, I don't even remember much of the morning. I know at one point the nurse brought me coffee and cake and my Tony checked my vitals. It was really quiet up there Friday. We had another audience and the entire thing was mainly uneventful. I got a few selfies with my doctor pushing chemo into my skull, but guess that's just a normal day now!

We left to get breakfast and actually The Flying Biscuit sounded rather yummy. So we ate there. I didn't have much energy but I gobbled my breakfast down and headed home. 

I'm pretty sure we climbed back in bed and slept most of the day away, even skip. It was time for lunch, a late lunch, and I felt good enough to make ravioli. (Not from scratch, don't worry). 

The afternoon went on, went and sat at the parade which was a nice change in view and then went home to bed. I was pretty wiped out and called it a night before Madison even made it home from the game. 

I slept like 8:30-6:30 but got up a lot. With all the blood in the urine concern I've been doing my drinking part. I had a few moments of bone pain but quickly prayed them away. Funny how a doctor says,”I can't believe you don't have none pain or anything?” And then that night you do… I wasn't having it. Be gone. And it was…

This morning I woke up and the queezies are in full force. I moved down to the recliner while still dark and Alana joined me. We talked a while and she kept my mind off puking… For a while. Then it hit. Dry heave central. Boo. First time in all my chemos that I got sick. So today I'm going to rest, eat things that sound ok (which is nothing, but maybe chick fil a taters), drink lots of water and probably take some phenergan which is my last resort med because it knocks me out. 

Hoping this passes soon. I'm so very excited to see Taylor Swift tonight and so more excited to see the sweet faces of my girls and listen to them sing, and dance. Need some energy tonight, bottling it now…

IT Chemo #2 Day

We left the house early as my anti-funk was telling me we very much needed to get out of the house. Our plan was to hit Trader Joes, sit in a park for a while and then get my second round of IT chemo (brain chemo). On our way, I was doing day 5 of my bible study. I had to laugh as I open it to the title, “God’s  Direction in your Life.” I started thinking, this should be good. What do you have God!!? What possibly can you show me that will help me climb out of this pit. I’m emotionally numb, lost my everything, and it looks like you are just standing by like a statue.

She starts asking questions about direction and I start answering. I start realizing instantly that a lot of my fear lies in the direction, the path, we’ve chosen. God very much paved the way, but I think it’s the fear of what bumps, holes, jumps and ditches there may be along the way. The first time you ride a trail, you tend to hold back a tad, not truly trusting where you’re going to end up. My personality is actually not typically one to hold back, but I find myself scared to take this path. I know it’s mine. I know its ordained. I know it is the only way. So I find that interesting.

Move along. Part two, Nehemiah found compassion for his people and she goes on to ask who I care for in my life that deserves my compassion. Whoa. That is a big question. I woke up numb. Compassion? It left me days ago, and likely, left me in the hospital and had not returned. So I begin writing the names of all the people who deserve my compassion. Talk about taking the focus off yourself for a minute. That was eye opening. So I began to pray for compassion and it asked another question, a loaded question, “

By this point I am pouring my heart out to skip, processing everything and opening up more than I had in days. And we get a phone call. Where are you? Well, yesterday I noticed my appointment had been moved to 2:30 and called to confirm, yet apparently, when it was entered, someone left off the 1. 12:30 it was all along… so because we left early and had all these plans, we were almost there anyway and happened to make it almost on time. How cool is that!?

I finished the study with a few more strong quotes and we prayed hard before going in. It wasn’t even a hesistation. My forehead hit his and both of our hands fell into each others. We were thinking the same thing. Pour our hearts out to God. It’s now. And wow.

We checked in, and met Tony. I almost got choked up at his cross and bracelet he wore. He had a beautiful soul, I could see it the instant I met him. He took care of me all the way and set us up in a corner. Now, this treatment, isn’t the most common thing ever, my doctor did a million at Emory, but never in this office. So the best part, we had a HUGE gathering. And I was nervous, mega chatty, caffeinated, and DID NOT want to hear the fluid being sucked out and put into my brain. So I talked. Who the heck knows what it was I said, but I NEVER took a break. It’s a 3 minute process and we laughed, cut up and had an overall great time. I was assuring them I was the 1% and would be most definitely making it quite far.

As my brother said in a post today, “He cannot wait for the doctors to shit them selves when the cancer is gone.” I died laughing. So funny.

I found out something extra awesome. So Dr. May asked if I put her picture on facebook!! Apparently her husband is friends with one of my friends from high school who asked Scott if that was his wife. Long story short, it was, and it is a really good picture of her, but we got a crazy good laugh and whoa, small world, comments. All I could think of is yep, God crossed our paths for a reason! Telling you, I have mad love for this doctor. She’s totally part of the team now, I think I need to get her and the staff bracelets!!

So do you want to know how I feel? Awesome. So far no side effects. We are to look out for severe headaches, stroke symptoms, severe nausea and vomiting.  I’m not looking for anything I don’t want so just envisioning those stupid little cancer cells being ablated and ingested by the chemo. I took all my vitamins today and I think It had been a while. I went back on my vegetarian cancer killing diet today and stomach is handling it! We took another long walk and I made it pain free. I’ve made it out of the funk and had a beautiful night with my kids. We planned Alana’s birthday and I got to hear lots of school stories from Madison.

It took a few days, but the fear of that unkown had to go. I fell empowered and my peace is back. So sorry to be an emotional roller coaster. I truly am trying to show others that it’s okay to be real, it’s okay to have a bad day and cry, but don’t stay there. Positivity, strength, spending hours in prayer and reading God’s word, will help you climb out. Skip was literally throwing me invisible rope and pulling last night. He knew how far I had fallen. How he stayed strong, only God and your prayers. And my kids. If I could just have your ear to her door as she prays you’d never believe it was a little 7 year old. “We know you have the power to heal.” “Please send your healing power into my moms cerebral fluid and cure her cancer.” “Mom, I am strong for you.” “Picture cotton candy and how crazy I am when I eat it and I eat every bit. That is what’s happening. Every bit of cancer is going to be eaten!” It’s one of the most amazing experiences. I look forward to praying with her, because she honestly does help me find strength and power in God.

Off to go to bed, in a much better place than yesterday. Looking forward to this chemo working for me. It will work, and I know there will be bumps in the road, but I’m not as scared anymore. I’ve ridden some of the scariest trails in the world, and you know what, I did it. I’ve ridden from tippy top of Whistler Mountain. One of the coolest places on Earth with some trails I may not be brave enough to ride today, until I look in the mirror and remember, be brave. Be brave. Be strong. Fight hard. And never ever EVER stop #findinghope.

Things We Did on my Birthday

It’s amazing how far in either direction you can go as far as your emotional well-being is concerned.

This weekend was my birthday, and as it approached, it just happened to be some of my hardest days yet. And then it arrived. It was non-stop greatness, filled with surprises (I struggle with those a bit), but overall, my people went 200% over and beyond what they should’ve.

Saturday started with an amazing Pink out at the 7^th grade Junior Chiefs game. When I read pink out, and agreed to pink out, I’m thinking, the parents get dressed up in pink like Friday night HS ball.  We arrived and my friends and cheer moms went all out. The girls were decked out in pink shirts, coordinated to say “#findinghope 4 Nadine” on the backs, along with pink pom poms and a happy birthday song.  It was such a bright cheery site and I felt very lucky to have woken up that day, for the first in four, able to get up and ready. The time and energy these ladies put into making this happen, whoever you may be, you are amazing.

Saturday night we decided to take a last minute trip to Berry Patch farms! Momma had some energy and these girls had to have their very own pumpkin! We got there 30 minutes before closing, which happened to be a blessing, because EVERYONE was leaving!! We had to patch to ourselves, the hayride to ourselves, and had a ball. We found an only lonely pumpkin which we adopted along with four others and then picked our two monsters. Of course we took a zillion photos and just overall had a super time. I even “ran” through the field. That would be a first in over a month.

Sunday morning we decided to invite a few girlfriends over to watch church as there was another surprise. Some time a little over a month ago, Laurie was contacted to give her testimony and how our lives intersected. Holy smokes. Had I not had a head full of stitches I likely would’ve been in a pile of ugly, ugly cry, but I held back my tears as I could feel my head wanting to explode. I’d heard her story before, but this was beautifully done. Very proud of my sweet friend, getting up there and telling the world how her love for Jesus is real and how it all started because she got invited to a bible study. Warms my heart and so glad to do life with my sister in Christ.

Then these crazy girls gave me gifts. Blew me away. Seriously, the gift of presence was enough!! A bunch of them got together and bought me a Silhuoette Cameo which I’ve been dying for! Crafting mama is about to go crazy! Cannot wait!!! Then I got a crazy thought out gift. Amber, my BF since 8, gave me the sweetest bag of stuff all linked to memories from our child hood. I won’t even go into detail, but when I saw the bag of cocounut, again, I had to do everything to ward off the ugly cry. I think people dropped off gifts literally hourly, the most unbelievable thing I’ve ever seen. I have by far THE most giving loving people in my life, hands down, the most generous friends ever. From pumpkins stuffed with jammies, to UP balloons tied to trees, to gift cards and some of the sweetest hand written notes, to head wraps, and voodoo dolls, to pillows and awesome tshirts, to bouquets and bouquts of flowers, to amazing cupcakes and treats, you all made this birthday, the best.

But, it wasn’t over!! Now it was time for my family to come! My parents cooked some traditional Jewish food from my childhood. I have been CRAVING matza ball soup like mad for over a week and it was SOOOOO amazing!! Skip bought a “Million Dollar Cake” from Alpine Bakery and if you are ever struggling on which to buy, THAT my friends is it. I think it is the first time EVER, we do not have any cake left after 1 day. Brownie bottom, cheesecake middle, chocolate mousse top, layered with ganache. Um, YES PLEASE!!!!! Delish. But now, I am done with sugar, because I have been super naughty and must get back onto cancer killing diet!

We had a blast, I even played a game of volleyball!! Wha Wha!!!??? Yep. I played and it made me SOOO happy. We all gathered in a circle to pray over our dinner and when we were done, Isla’s little smile made me think, “Ring around the Rosie!” So because I get to do pretty much anything I want, I made everyone play ring around the rosie. Yes, I did. EVERYONE. We spun in a circle in my yard and we all fell down. I’ve never giggled so hard in my life with tears of laughter squirting out of my eyes! Not on video, no picture, but I’m telling you, it may have been the single coolest family moment of my life. Something I’m sure none of us will ever forget.

The night finished up beuaitfully, and everyone went on their merry ways. I slept well, and got back onto my 5:00AM routine. I didn’t fel amazing, but I was alive. And then, it happened. For whatever reason, those thoughts of “what if that was the last game I ever see” and “I can’t imagine, what if that was my last birthday” came tearing through like a freight train. Typically, they do just that, but apparently the enemy set up a station and I got stuck. Skip and I decided to take a walk and get out for a while. I talked, expressed my funk, and we figured it was just the low after big long weekend.

Unfortunately, it kept on and by the time I woke up this morning, it took him hours to get me out of bed. I had a 3AM insomnia attack where my brain just spun out of control. I battled it with prayer, scripture, anything, and it wouldn’t shut up. Around 5:30, just before the kids awoke, I fell asleep. Choas began quick;y in my house of oversleeping people and onec they were all out, again, the quiet, brain crushing thoughts returned. Finally Skip was ready for the day and took greater interest in getting me out of bed. I’m not sure if it was prayers by then, but that man showed strength that at this point encourages me. He was awesome. Through my funk, he stayed rock solid. He finally said he was going to drag me out of bed, and he pretty much did just that.

We left the house early in hopes to hit Traders Joes, and there starts the story on my IT chemo #2, to be a seprate story all together.

Weekly Monday News 10/19

Weekly Monday News Flash:

Tuesday IT Chemo (aka cerebral fluid chemo) 2:30 check in, 2:45 procedure. Takes a whole 3 minutes.

Thursday AC Chemo (aka systemic chemo or Adriamycn/Cytoxin Chemo) 9:45 checkin, 10:00 port access, 10:15 doctor visit, 10:30 begin chemo. Typically 3 hours after we start pre meds.

Friday IT Chemo: 8:30 check in, 9:00 procedure.

Prayer requests are for my doubt. Pray this works. That I will have minimal to no side effects. That my body handles three chemo's in one week. That no neurological side effects come about. That we keep looking upward even when we don't know what to pray. Thank you... <3

Purge

I was holding onto a fear yesterday that the new side effects of IT chemo were wearing me out. Exhaustion, nothing. It was hard to walk up the stairs without needing a power nap. My muscles hurt. But I trudged through. And I say trudged, because my heart was heavy with fear of the unknown. I think we all find ourselves in that place at some point, and it leads to worry and typically nothing good.

Last night was different but recognizable. Last night I had to change 3 times, soaked head to toe, and freezing. I slept great in between, and super grateful for that. I felt my body purging every drug from my body. It happens every time I take narcotics. I just didn't believe they had stayed in my system so long. Guess everyone else was right. Fine. "You just had brain surgery" they say, with a look of like I'm crazy. "It's okay to sleep the days away, your body needs rest!" I want to tell them bah humbug! lol. It's NOT okay I think to myself!! It's just not! And then I realized, I just don't want a wasted day. I just want every single day, every second, to count. It was just another fear and selfish desire, making me super bratty and making me lose my cool.  I won't go into the thoughts I had, but they were not pretty. HA! So, I'm now throwing that one into God's enormous backpack right now and sending it on it's way. I want to be thankful for every day, I am thankful for every day, every moment I get to be here, and every smile and hug I get along the way, wherever that may be. Even if it's from my couch. And today I can smile a little bigger, and it doesn't hurt so much.

I finally woke up at 5AM quite excited to get back onto my normal routine. I had not completed a few days of my Stronger study or journaled, nor had I had my bath and morning rush of feeling awesome in DAYS. I hopped in my sea salt tub and had a moment. I started my chats with God, soon to be a moment of complete worship and then felt him saying I was healed. I was kind of shocked and let it go at that because I'm telling you, when that happens, it's going to be crazy town around here, and I'm kind of excited to see it.

Time to go downstairs.

I grabbed my pillow and blankie, made some hot tea and sat in my cozy recliner and literally dove into God's word. Bathed in it. Couldn't get enough of it. And of course where I was at today in my study was entitled, Anxiety. I had to laugh when she asked me to list my anxieties and stresses. But then she turned around and had us pray the good Phillipeans prayer over each one. Handing them back to God and letting him fill those spaces with divine peace. I prayed hard, journaled my prayers, and poured my heart out more than I had in days. I felt able to and clear. My last prayer was for me to close my eyes, and wake up peaceful. I did. 

It was a short nap and I look at the clock. It's 7:30 and the sun is trying to light the sky. I grabbed my bible and sat outside. Weekend mornings are so still, so quiet. It was cold and fall is most definitely here. I sat for a few minutes and started reading wherever. And I saw these right off the bat:

5 

I lie down and sleep;

I wake again, because the Lord sustains me.

6 

I will not fear though tens of thousands [cancer cells]

assail me on every side.Psalm 3:5-6

3  In the morning, Lord, you hear my voice; in the morning I lay my requests before you and wait expectantly.Psalm 5:3 

I read around them, but just kept coming back to them. Sleep doesn't come easy during crisis, but it can happen. When we cry out to God, and place our fears and worries, struggles and anxieties on the only one that is strong enough to carry them, we can sleep peacefully, and I do sleep pretty peacefully these days. I have an army of angels who don't sleep, who pray at all hours, and I know that is very much part of the reason I do. But I am peaceful. I may not always be happy with the circumstances I've been dealt, but I am peaceful. I wait expectantly for answers to my prayers that I so transparently made to God this morning. I feel sustained and loved, and the outpouring of friends and family are key in that feeling. I feel grateful. Today is an UP day and back on the fight-wagon.

 

Tired After Brain Surgery & IT Chemo

Ew, frankenhead is all I can think about! And that awful grandpa haircut!! I'm not sure how the kids didn't freak, but both of them were like, huh, thats cool, moving along to MY day now... Seriously, it was as simple as that. I'm all suffering through wearing a headband so it was an easier transition and their like, yep. Just another day in the Wall house I guess!! 

On a feeling note, I have literally slept the last 24 hours away. I have zero energy. Zapped. Weak. Blagh. We got home and I haven't been in much pain, really none, except for a new hip pain that I've been given. Oh, and unless Skip makes me laugh. Then it feels TERRIBLE like my skin is being stretch over my scalp!! (That was for you Skip, see what happens?!) The girls and everyone kept the house super quiet (plus I wore ear plugs) and I slept pretty much through the afternoon, evening, and then like 8:30 to 6:30am. I took some melatonin before actual bed and I still haven't woken up.

Otherwise, nothing to crazy going on here. It's my birthday weekend and the struggle on what I want to do, with whom, when and where begins. Alana asked for a SUPER big party, but didn't think I'd be up for that. But then in the back of my head, I wonder if that'll be my last birthday, and then we didn't do anything cool for it. I try not to think those thoughts too much. They're super negative, but just trying to be real here. It's hard to not see them cross your mind, just learning to do just that, and learn how to let them not take settlement.

We have lots of people asking to visit, hang out, whatever and we've had to say no. We don't want to say no, and hope you all understand, it's just been a bit harder than we expected and visiting is just to overwhelming. Know we love you all and I'll text/message with you all day long as I don't fall asleep. Just know we love our special team. Thank you for the support you continue to show to our family. It's beyond anything I've ever seen or witnessed and gives me great hope. Fighting for all of us,

Nadine

My next appointment is Tuesday at 12:30 PM when I get my 2/12 IT chemo, then Friday at 8:30 AM for 3/12. Next AC Chemo is on the 22nd.

24 Long Hours

Hi there. Me again. My beautiful hubby blogged yesterday and so made me giggle. Glad he was willing to keep the blog going!!

The last 24 hours have been physically grueling. I've been managing pain and nausea since I woke up from surgery and think I just finally got it to where I can tolerate it. 

Unfortunately, we have not had the greatest of care here this go around. The staff was very inattentive either not showing up or disappearing for 30 minutes at a time. It was strange and not typical NS practice. That said, we got our angel last night. Brittany was amazing and knew her stuff. We planned pain management and got the nausea under control. Off most IV meds and just taking pills at this point. I can't wait to see what this does to my system. Not sure I've ever used that much pain reliever in one day. Not even with the mastectomy!! 

Yesterday Dr May came in and was all sunshine. I know she is scared. I see it in here eyes. I told her what Dr N said and she smiled. When I asked her how many of these she had done, she said she used to do them all the time at Emory. I think my mouth might have hit the floor. All week I was wondering if we needed to go back to Emory and the timing just was not there. So when she said this, after JUST praying for reassurance, we felt in perfect hands. 

It was the easiest part of my day. As you all may have figured out at this point I have severe sensory issues so when I start HEARING the spinal fluid flow out of my brain I start blurring out the Smurfs theme song. For whatever reason it was the first thing that popped in my head. We all got some good giggles. Unfortunately as I type I can hear it doing something all up in there… So. Not. Cool!!! Lol. 

After the infusion was over. Less than 3 minutes, (just sayin this was the bom diggidy to not have another spinal tap! Keep that port flowing Lord!) Kelly left with a hug and was on her way. How uneventful was that!! Amazing!!

I went into a deep prayer after that. Skip and I lay there and I whispered with God in a way I had not before. In the end I felt his all encompassing agape love and felt I was able to return the love. I can't explain it, but I had never loved God in this way and the amount of peace and joy that fell over me was beautiful. In the moment of sensory overload and pain crisis he stepped out of heaven so I could tell him how much I loved him. 

We also prayed hard because yet again it was a red chemo drug, the blood of the lamb. Prayed that the cells would be obliterated! Gone! Die cancer cells die!!!! We are expecting a miracle. As Jim Namnoun says, it will work. His sweet nurse sent me a note saying for the rest of the day he repeated that over and over. I can't tell you how much that moved me. We are holding onto the fight with all we have, the biggest #teamnadine army I could ever imagine and we all feel so blessed to have you alongside us.

The verse of the day says: Whoever believes in me, as Scripture has said, rivers of living water will flow from within them.” (John 7:38 NIV) we are picturing this to be true in my body right now. So healing. 

My eyes are super sensitive to light so this is getting hard to write. We have a WHISPER note on the door because sounds are amplified and just so all know we won't be having any visitors of the next several days. I'm already a little nervous as we do have the loudest child on the planet (super cute but true!) and maybe the most annoying dog when he can't tell between a door knock and someone stubbing a toe. Lol. 

Off I go. Just got a good 5 hours of sleep and hoping for some liquid diet breakfast here soon. You know you're jealous!!! Buhaha. All I've had were 6 graham crackers and OH the BEST meal of my life, Cambells Chicken Noodle Soup. So not my thing but it was glorious. I think I sang after every bite. Lol. Because even though I feel good most of the time, food still has its moments where nothing sounds good. But that… Mmmmm. Time to rake out the cabinet and stock it with sodium soup! (As my grandfather would always call it)

Ok. I've rambled enough. The last thing I want to share is the love I have for Skip. Every marriage has bumps and bruises but God brought us back to the start of where we were 20 years ago. He lay by my side in the itty bitty bed and I can't tell you how warm and safe it was to be held. He has been amazing. I saw my reflection for the first time and kinda freaked. Looks like I'm growing a unicorn horn off the the side of my head and it freaked me out a little. But you know, he wasn't moved and made me feel so pretty anyway. That's love people. I'm head over heels madly in love with the man whose been by my side for twenty years in a way I never loved him before. I hope you all find your love because truly, it shouldn't take this to make us find what should've been there all along. 

My favorite nurse is back! Time for good stuff!!!!