So Became The Crazy Lady

This week has been kind of a blur so I’m going to start with yesterday. WHAT a day! I woke up feeling stressed. The day prior I had requested a chat with Dr. Dunbar and finally that evening emailed my laundry list of concerns and questions. I was pretty sure she and Dr. May were not communicating as I would like, that this team was failing me, and that we were completely unloved.

She finally called me yesterday around noon on the way to Walmart. I pulled over to talk. I ended up in heaps of tears, massive anxiety as she was NOT happy with me nor appreciated my concerns that no one had touched base after Thursday’s incidences. Which I still stand by even with what I am about to write.

We did get off the phone with the plan that she would discuss and come up with a way to not have a repeat of Thursday and that Team-May-Dunbar were fighting for me and loved me. I don’t think I liked her very much getting off the phone or felt like it was honest, because I still had zero peace. I walked into Walmart in a fog and felt like I may pass out at any moment. My head was spinning and told the girls I felt like I was being flushed down the toilet. (Then a dirty old dump truck was in front of us, making this farting sound, and Alana was sure it was pooping on me while I held on for dear life. Gee whiz, at least it made us all laugh)

I went home and began talking to Skip. I ended up making 6 quesadillas and by the end I was throwing butter in the pan and he came up and I slammed the knife down. I was broken. I didn’t know what to do. I didn’t know who I trusted anymore. I was completely lost. I did know however that my standards for a team of doctors could never compare to Team-Barber-Namnoum and that that was partly my problem. No one will ever be as near and as dear to me than those two doctors. (Well, Dr. Williams is pretty fantab as well. He makes the cut as well! Haha) But is all reality, the expectations that I have are mostly unattainable for any doctor to really achieve. Maybe.

Skip and I went to lay down. I knew if I stayed awake any longer I may experience my first panic attack or I was already having one, or it might even be a heart attack. I couldn’t swallow and he was about to throw up. I remember him saying something about praying. We were cuddled up. He said two words, and I said two more. He said another and I said another. I think they were wisdom. Confindence. Discernemnet. Hope. Peace. I really don’t remember and then I knocked out.

We woke up not too much later and the first thought that came to mind was the fact I had never really asked Dr. May if she was okay with this team. I basically threw them together. And so my message was left on the nurse line for Dr. May to call me back.

I decided I needed Kombucha for the trip I was completely not in any way ready for and some junk food, along with my daily dose of Starbucks. After about 10 minutes,  Dr. May’s nurse called. She ranks as one of my all time favorite nurses. We started talking as she wanted a better idea of WHY actually I needed to talk to Dr. May. We after a while came up with the question of “Is she okay communicating with Dr. Dunbar. Is she good with this team.” But before that, I explained ALL my frustrations, tears, concerns and issues to which her response was, “Nadine, you’re on a LOT of Prednisone. A LOT.” Oh. Apparently, this is why I am losing my mind, uncertain about everything, freaking out basically about every one and everything they are doing and planning. The doctors WERE talking and WERE praying for me and WERE thinking about me and DO LOVE ME. Huh. This was new news for me. I have never had a Prednisone issue that I can remember. But it explained everything and honestly, she made me feel sooooooo much better. I got off the phone with her and finished shopping. I felt a little bit of that anxiety chipped away.

We got home and I got my next call from Dr. May who I swear within seconds was laughing at me. She told me a story of her husband who got crazy paranoid when he was on them. It was all starting to come together. She said the exact same things Carmen did and I felt more of that anxiety chip away. Then she told me about how though she didn’t know how Dr. Dunbar was with her patients that as a collegue she really liked her. That she was great communication wise and very on top of things.

Sulk. I suck. They are communicating. I hate you Prednisone! You are an evil drug with mean powers to make me think that everyone was against me. Too bad I’m going to have to be on super high doses again, but this time I’ll be sure to make ZERO decisions about my healthcare during that time. Now, I’m ready to go on our trip. I feel WAY better.

I made reservations for the hotel and so my packing fiasco started. It went well until someone made me annoyed and then I was pissed that I do everything. Prednisone people. It wasn’t that bad and I got this AMAZING thank you from Skip for always being so on it about our trips. I’d say I’m a little over the top in planning and cleaning, but no one ever had to do anything, and really, I liked it. I think it’s fun.

I crashed out that night as soon as my head hit the pillow and for the first time in over a week, I only woke up once. At 6:30 I was ready to jump up and go! How exciting we are going on a trip! But instead I lay there, enjoying talking and decided, it didn’t matter what time we got there, no stress was allowed.

We finally left around 9 AM. All were happy except for Jax baby. He was very very sad. We have the dog keeper set, our house keeper set and off we went. We decided since I felt so awesome with no headache that I would drive first. It was a little weird at first and my eyes seemed to do weird things, but no headache. Then somewhere in TN, my phone rings. It’s Dr. Rudnick. Oh my, I totally forgot!! He starts talking and I pull off at the next exit so I can talk without distraction.

He had reviewed my scans and asked about our current plan which he liked! Great1 Then he asked what else were we doing. Well, nothing. That is when he began telling me about this immunotherapy drug that his team is having good results with. I had heard about it but it is only apporived for Melanoma and Lung. Apparently they’ve been using it for others to and he talked a little about how it would work with insurance and compassionate something support. That I’m different and that my in my case this could be really good for me. That this would be done along side Depocyt, as at some point it WILL stop working. Holy smokes. This is AWESOME. He asked me to do my research on it, but basically, that is what he would do. Oh, and that there was no need for me to fly all the way to LA that I needed to spend time with my family and that we would just touch base as needed. I hung up about to scream! I LOVED HIM! How exciting. How blessed. Thank you God for amazing doctors.

We did a little research and put calls into Team-May-Dunbar. They can absorb it and add it to their list of stratedgies. I didn’t even ask for a return call, I just want them to talk about it and we can figure it out next week. At this point, I am willing to do pretty much anything. I’m still asymptomatic and still have every hope of getting our rare miracle.

What a gift. Amazing doctors and teams of people fighting for us all over the country. IT’s like a dream come true. I can put my hands up, and let them work, and I can just pray for them all as they do what they know best to help make this miracle become a reality.

The funniest thing I heard during the entire ordeal was bat-shit-crazy and it has me rolling. That is what happened to me! I became an insane lunatic in the midst of an already hard, scary, scary time in our lives. It feels WAY better to feel so normal. Dr. Rudnick’s call finished the chipping and I’m back. Bring on DC and all the fun! I’m ready!

DC Trip

Our trip to Washington D.C.! Beside Skip, none of us had ever been to DC and Madison and I have always talked about visiting! Last week we thought we would try it, and then the blizzard hit! So, we are trying again! Keep checking back for updates on our super awesome trip! I’ll add pictures and fun things as we go!

And as always, THANK YOU for making this happen! We have to use a good chunk of Hope money for insurance but we also have some AMAZING vacations planned and unplanned along the way…

Here we go….

1/29@9... Just stopped somewhere in TN for Starbucks after I drove for 3 hours straight!! I woke up without a headache for the first time in who knows how long, so we thought I should start. Nothing. I was able to focus my eyes, and even talk on the phone a little! I’m so excited I can hardly sit here and type! Dr. Rudnick called along the way and I’m sky-hi on adrenaline. I’m in love.

1/29@2... That was the best rest stop on the planet! We are in Bristol VA! There was a sign for people to come in to play their guitar so why not! The girls both played and got Bristol Pics and then the manager came out and asked if Madison would like to play on their YouTube channel! Lol. So he brought out his little camera and people crowded around and it was super cool! Great place! It's random things like this that make life special. https://m.youtube.com/watch?v=pmxEvN4H00o

1/29@11:30PM... So we made it! There is a good little bit of snow left too! The very first thing we saw was the Lincoln Memorial and Alana FREAKED! She was so excited! The city reminded me of NY as Skip navigated Spaceball One through buses and traffic! We stopped at the busiest Whole Foods on the planet and stocked up on some goodies and stuff for the week. We got to our hotel and they at first had us in a 2 bedroom, what we wanted except um, it was in the basement. Oh. No. Sorry. So we got a 1 bedroom on the 8th floor down the hall from mom and Warren who just arrived!! Apparently there are 2 10th streets and Ls in the city and they were at the wrong one. Well. Everyone is tired, happy and settling in. Can't wait to see what tomorrow brings. The snow in the parks already brought back memories of living in NYC and walking in the snow. It was really cool and cannot wait for morning!

1/30 We woke up this morning and took our time. We made a yummy breakfast and then packed our snacks, bundled out and headed on our first adventure! It was a few blocks to the Metro station and the kids were ECSTATIC to ride the subway. Funny how they all smell the same! Had a sweet cop help us buy our cards and off we went. We decided to head to the Smithsonians and figure out which one once we got there. The mall lawn called my name and we gravitated toward it, just for a picture. By now, we had easily walked a mile and off to the Aerospace Museum we went. Skip is our plane man and me loving space, it seemed a good fit. Plus, I knew we could watch a movie and put our feet up! We walked through a few exhibits and then hit the planetarium. I closed my eyes because OH MY the starry tilts and flashes was a bit was a little too much!! We snuck in some snacks as well, and afterward, Alana begged to go downstairs. I think she is going to be like her dad with a love of airplanes and flight. She was begging to go onto/into every plane and was running around like a mad lady. Then we decided to hit the simulations and the girls and Skip flew some simulators doing a million flips over and over and over... I decided at the last minute that 3 minutes of that was likely entirely too much for me so Skip graciously went twice. We had to get the funny pictures at the end. The girls said their favorite parts were that, the planetarium, and going through the planet exhibit, especially the part that showed the sizes of the planets, moons, and the sun. It was pretty awesome. Afterward, we walked over to Plan B Burger, warmed up, and pigged out. I may never eat again, but for sure THE BEST veggie burger I have ever had! We then went to get our daily Starbucks, played a little just out and about in the city and then jumped on the Metro back. We decided to run down to Mt. Vernon Park (which we never found) and ended up trying to make a snowman in a little garden patch. We threw a few snowballs and then headed home. I will say, the mounds of snow will likely be the highlight of this trip and if we did nothing else, the girls wiould be happy with the snow alone. Every step Alana takes you'll see her in the snow, throwing a foot in the now, or running around in the snow. If I said right now, we are going to play in the snow they would BOLT out the door. (We are all resting and chilling) Tongiht we plan to take it easy and get a REALLY good night sleep. I got pelted in the chest with a hard snowball, and feeling that, but otherwise, I feel pretty good. For me, the more active I am, the better. The less my head hurts and the happier I am. I told Skip that yesterday, I would've thought nothing was wrong with me. We traveled for 11 hours and I felt like old times. No weirdness, just a good day. It was so nice. And honestly, other than waking up with a headache, it was the same. I wish this could last forever, but I know too well this is nothing to take for granted. We are super blessed to have me feeling well at the moment, and could turn on a dime. I woke up stressing about Dr. Dunbar again and then was reminded in a new book of Joshua 1:9 and how I am not to be "bullied by my fears and diminished by my insecurities" and that "overwhelming victory belongs to you because you belong to him." (I am yours and you are mine!!) I'm going to have the week of my life with people I love most and not going to let the enemy steal that joy. I've been granted the gift of feeling well and I'm so thankful for that. Walking around this city has made me so very happy and I didn't even mind the cold. Not one bit! Which is HUGE for me. It was lovely. I cannot wait to see what adventure comes tomorrow, but I hope to visit National Community Church started by Mark Batterson. I've been chatting with them today and looks like we have a lot of options! I've always thought their start up was one of the neatest stories, what a blessing it would be to visit.

2/1 Wowzers. Another crazy long awesome day that started right with for me, THE best church services of all time (which will be another post) but we went to National Community Church where it just so happened Mark Batterson would be and what a treat. Alana and I met him and gave him a teamnadine bracelet and I told him I would email him later this week. It was awesome. Oh, did I mention it was in the unreal beautiful Lincoln Theatre?! 

We left there and went to Meridian Park where I was disappointed because all the fountains were turned off. Ok, not totally wasted as we had a snowball fight and basked in the sunshine and warmth. I think it was like 65!! People were out everywhere! 

We later that day took a cab to the Lincoln Memorial and Alana was nuts excited!! We all were. The reflection pool was frozen except for a tiny spot in the middle which I later realized would've been amazing in the sunset. It was so beautiful. Our goal was to make it to the White House before dark and with the 8 million picture stops along the way I was blown away that it actually happened. I was so in awe of the Washington Monument. And the contrast of the dark blue sky and sunset was more beautiful than any camera could ever take in. There were just many moments I just stood. We saw the White House through the gate as it stood in front of a morphing blue to pink to purple sky. Birds filled the trees and would swoop down, even pooping on moms head!! Yikes!

We later ate at Old Emmitts which was a super cool treat and really neat place and then made our way back to the hotel. I figured out we walked around 4 miles today and I feel as good as anyone else here!! So wishing I had my bath and salts but soon. I also need to eat healthier because really, eating out is getting the best of me! Ahh! I'm not sure what tomorrow is other than buying Shawn Mendes tickets, but I do know this... We are sleeping in. 

Monday! We decided to spend the rainy afternoon at the Smithsonian Museum of Natural History! What an incredible treat! Alana had been waiting VERY patiently for the Butterfly exhibit to reopen and February first was the day! We headed straight for that area and checked out the insect room while we awaited. I think Madison was a bit freaked out by all the creepy crawly things, Alana and I were in awe. We went into the Butterfly room and I actually had a butterfly land on my head!!!! It was so amazing, one of the neatest things ever in my life. I've now read, that butterflies symbolize hope and many other amazing things I cannot remember at the moment. HAHA! We visited the mineral room which could easily have been an entire day, dinosaurs, we watched IMAX dinosaurs, we walked through the mammal exhibit which was UNREAL. Like a stuffed zoo! Madison wouldn't step foot in. We walked through the underwater exhibit which I was dumbfounded on how many things Alana knew the name of and was rattling off what they eat, do, etc. Thank you Octonaughts!!! Hilarious. I even took a picture next to one of them, because I couldn't even pronounce what the thing was! We took cabs back to the hotel and decided to hit a Mexican joint not far after resting. Let me just say, DC has NOTHING on Atlanta Mexican. We giggled a lot and overall had a nice time. Everyone got to bed early to be ready for our last day of adventures. We probably watched "Descendants" as daily begged to see by Alana, I highly do not recommend, but still nice family time.

Tuesday! Our last day in DC and we made it a big one. We started at the Holocaust museum and the information desk instructed us to Daniels Room first. It's the holocaust from a child's perspective. A survivor. Let me just say, by the end I was an emotional wreck, and could've been good to have just went through that. It was so well done. I have no words the impact that left on my heart. We did decide to walk through the actual exhibit which starts on the fourth floor and meanders down. There was a lot I just held Alana's hand and walked by, there were more things I read that peirced my heart to my soul. Deciding we needed a big break, we skipped the 3rd floor and went out to the finish. It opened up to an amazing reflection room where we lit candles for those who perished. The scriptures on the wall were amazing and it was just beyond anything I could ever describe. I am very glad we went and very glad my girls got to learn it from this perspective. We got some water and decided it was near time for our tickets up to the top of the Washington Monument. They let us in a little early and up to the tippy top we rode. What a spectacular view!! We took lots of photos, Alana freaked at every landmark we could see, and out the NW I found my next mission, the National Cathedral. We were all starving and had decided to go back to the Plan B Burger joint as it was seriously the best meal we had all ever had. It was true again and it was nice to refuel. We took the Metro back and chilled again. Skip and I were able to go on a date night and decided to hit the Cathedral. There was a drum circle that evening. We took a cab and as we approached it may have been the most enormous cathedral I have EVER seen. It was unreal. I did find out there is a Darth Vader face on one of the pillars, not in eye sight, but I think I found it. We went in and there was a rolling thunder. The sound was unbelievable. We found a couple of seats with a couple of drums and sat down. The people watching was amazing. There was every race, ethnicity, every kind of person young to old. It was awesome. They apparently only do this once a year, and there were people from ALL over. They started with some instruction, some guiding, and basically, drum your prayers. Listen to your heartbeat. I cannot tell you how much I prayed or what I even said, but it was cool. I could hear rythms and would try to copy them. Skip is my drummer boy and I loved watching him beat. I think he was letting out a lot of anger or something, because man, he was going to town. He told me later he was waiting at one point for them to start slaughtering calfs and we got a good laugh at some of the weirdness. We roamed around the cathedral at the end and found our way to a prayer room, with candle lighting. I was intrigued by the massive painting of Jesus on the wall. It was beautiful. We sat and prayed for a while and we lit a candle for our family. We finally left and decided to go to Adams Morgan for some adult time. I had to laugh. A friend told us to try a joint called Madames Organ which looked totally cool, but the coffee house next door looked way more inviting and the noise was low. So us old people decided to go there. We had a great cup of coffee and some yummy dessert, I never eat sugar so it was GLORIOUS chocolate chip cookies, and then made our way back to the hotel. We had totally forgotten we were going to leave early and needed to pack, so we did a little and off to dreamland.

Our trip home was long but nice. We stopped what Skip says 825 times for me to pee and 3 times for Alana to poop, but it wasn't that much. I was just doing my duty of being well hydrated before Thursday's chemo. Thankfully, we all made it home, Skip's mom and Warren arrived as well, and other than the stench of some rotting something in my refrigerator a sweet friend had come by to clean our house while we were gone. It was so nice to have everything ready since I just cant do it all anymore. A huge weight lifted during the packing process as I tend to pack, plan and clean for days before our departure. And not complaining, as I love planning, but it was a good burden to be lifted.


Overall, our trip to DC was one of the best trips in my life. Our traveling parents were incredible and told us to "pretend they were our children and that they would just tag along, whatever we wanted to do." Really? Okay. And they stuck to that. It was one of the most peaceful trips ever with some amazing family time. And the business and adventure we had kept me completely distracted from the dread of Thursday's chemo. I wish we could go back and see so many more things, but for now, it was magical, and we will leave it at that. Oh, and the weather, insane perfect. High 40's all the way to mid 60's. Thank you God for the perfect timing once again. Oh and if you need a place to stay there, I highly recommend the one bedroom suites at Eldon. It was close to the metro and a quick taxi ride to the mall, and a full suite for a little over $100/night. Rates likely go up for different seasons, but January/February is low and the museums were basically empty. Just awesome.

I want to say thank you to our Hope supporters because without you, we couldn't take amazing vacations like this. We were careful on how to spend our money and were pleasantly amazed at actually how little we spent. The gift you gave us to travel, and pay bills, is one we could never in words know how to thank you. Thank you for coming along our amazing journeys and let this one be just one of many yet to come.

Iron

I’ll try to make this short, but I must share this God story. I’ve had a few shared with us on how God truly just turns our eyes to a page in the bible and blows us away with something we have never seen before. Thank you for those, I had one today.

It was another night of rotisserie sleep. Two hours, turn. Two hours, flip. Two hours, turn and on. Sometimes less and if its more I’m usually in pain. So I came down stairs for my quiet time not having a clue where to start. I opened my email as I knew Girlfriends from God had sent their daily devotional. It was about the few really good friends you have. Those ones who are brutally honest with you, but love you. The ones you trust most to let you know that the shirt you are wearing is the ugliest thing on the planet. Those.

The scripture at the top was Proverbs 27:17 “As iron sharpens iron, so one person sharpens another.” I thought oh, that is nice. I looked up a few translations and basically all the same. So I opened my bible to Proverbs 27 and just began reading.  There were a few gems, and it was a good time, I read the notes and then, there it was at the very bottom, there was a note for exactly what I was looking for:

“Proverbs 27:17: There is a mental sharpness that comes from being around good people. And a meeting of the minds can help people see their ideas with new clarity, refine them, and shape them into brilliant insights. This requires discussion partners who can challenge each other and stimulate thought – people who know how to attack the thought and not the thinker. Two friends who bring their ideas together can help each other become sharper.”

I closed the book and out loud said, “what! No way.” This is what I am praying for. A team of doctors who do just that!! I can see them. I know it is possible and now I will just keep praying this over them. God has a plan, and he just poured it out on my little lap in the most amazing kind of way this morning. May a team come together who can sharpen one another and bring a new idea together, one that makes our miracle come true. Brilliant.

That’s all. What, you want more? Okay, maybe a little more.

Most know by now it’s been a rough week, mostly for Skip and I. Mentally, physicaly, spiritually, we were beat down for days and have to look at a repeat in a week from today. Thankfully, little by little, we’ve been able to climb out of yet another hole in the ground. I feel like yesterday was better and I could breathe a little easier. The kids are amazing and only make me smile. I’m walking 1-2 miles a day, attempted a yoga ap that was just proof that it’ll take much more than an ap to get me to do yoga, and I’m mostly positive. I weaned off the crazy steroids, and it’s all just left me tired, but almost relaxed at the same time.

I cannot explain it all but this morning I did something different. I left it all, the fear, the pain, the doctors, the anything, in my living room at Jesus’ feet. I spout out every single thing that came to mind in the dark. I’m talking everything, take it, I don’t want it. And do you know his response? “For I am yours and you are mine.” It wouldn’t leave my head. I could hear myself saying “I am yours” and God saying “you are mine.” So I give up my right to be in charge today of this doctor battle. I have a call that was almost intimidating from Dr. Rudnick today, and I know it’s all part of the plan. I have some amazing doctors who are being placed just for me, I always have had the best of them, and I feel like it’s going to come together today. Something big, I can feel it.

Thank you to all of you out there who reached out this week, when you didn’t know why, or maybe I asked you to. It meant more than you know to us both.

XO

Blessed to Have Another Weekend

The last three days I will not lie have been kind of hard. Emotionally, physically, spiritually. I think Skip and I had a few down days at the same time which doesn’t happen too often, and last night realized it as we ventured to Kroger kid less. Just before we left, I would just look at something and tear. We jumped in the car and just started talking. It’s been a hard weekend. Most of it is the inevitable realization that this fight likely has an end, and was heavy on our hearts after Thursday’s events. We talked about hope and you could tell it was becoming a word of annoyance, and then I remembered, always go back to what you know. “She told us we can never lose hope.” Skip asked who? “Nadine. Our angel. The first day. We can't.” It may be mad hope at the moment, but it’s hope and we cannot let go, because at that point the days will just keep getting worse.

It’s been quite a while since we have been without the kids actually, likely a much needed stress-cry-laugh-brainless activity break. We didn’t even think about it, our bodies walked straight up to the Starbucks coffee stand. It’s 5:00 in the evening, oh well, add extra cream and get a small. We basically walked the aisles and decided we would get creative and have a fun night. We came in for burger stuff and left with a buggy full of random items. I have not had meat in a good while, and an organic fluffy bacon cheeseburger was on my mind. So was ice cream cones, with sprinkles for the kids, but that’s a whole other thing.

We ran into a few people, grabbed a couple of hugs and smiles and was even told later on I looked good! That no one would ever know I wasn’t feeling well! Well that was the nicest compliment ever. I had just had the flood works on ten minutes prior, but yes, I was feeling tons better. 

Friday was actually not too bad I think, I rested up and actually don’t really remember Friday now that I think about it. The only thing I did notice was that neither doctor called to check in on us and an online appointment was made for two weeks out for another dose. No one ever talked to us, and that upset me, but I let it go for the moment. I did still have the ridiculously amazing doctor in Los Angeles via email, whom I’ve still yet to meet or discuss options, but he actually did take the moment to email us back and explained that the Depocyt would absolutely cause those reactions and that the first dose is always the worst. Fabulous. Why does my now favorite have to be a plane trip so far away?

That evening I thought it would be fun to get our street up to Tres Agaves for dinner since the schools had been closed all day and we always say we want to get together outside of the bus stop. So we did and it was a great time. I think it’s always good to see some friendly faces, laugh a little or a lot, and know that we have the best street ever for us. The kids walked home in the “snow”, aka flurries, and we followed a little later. Skip and I put the kids to bed and snuck out for a minute to savor the quiet. The grass was whitening and the moon and street lights were glowing. It was so pretty, and cold. Okay, I’m done. Haha! If you don’t know, I do not love the cold, AT ALL.

Saturday was a snow day and we woke up to a fairy dusting – nothing to sled in. I made instapot steel cut oats and cereal and that was after the kids had already come in! They were so excited, but I knew that if we hung around it would be a short lived snow day, and we needed to sled. Problem was, my head. If I say it once I’ll say it a million times, it’s a headache you would know was not normal. Migraines, pounding, eyes staring at computer all day – normal. Inflamed meninges and pissed off cancer cells – abnormal. It’s pain literally just under the scalp. No pounding, or dull aching, just nice sharp pain that makes it hard to look at bright light or listen to anything loud. So I went and lay on the couch while Skip and the girls packed to go to Ellijay. I was now debating because this was getting worse. Then I remembered memories. Suck it up and be strong. It’s just a headache and you can sleep in the car, or maybe not, we are taking the jeep. I took my pillow and blanket and put on enough clothes for an eskimo and I never got hot. I’m not kidding, that hat, snow pants, all of it, never came off. It was gloriously summer under my clothing.

It was pretty impossible to sleep as we watched the changing snow lines all the way. Finally we passed our road in Ellijay and knew the road was closed to the top of Fort except to 4x4 vehicles, which makes it super fun. I’m not quite sure of the elevation, but everything changed so quickly. It was a beautiful winter wonderland. First we stopped at the overlook and hiked to the top. The kids were in HEAVEN. There was ice on the rock overlook site, the background was breathtaking and snow balls were easy to make here. I took a ton of pictures with my new camera and soaked it in. My parents had been slowly traveling north as well, and just so happened to be there at the same time! What a fun surprise and perfect timing!

We decided to travel to the top of the mountain and my mom mentioned a cell site that had a long white awesome sledding road. So we went! More and more beauty as we drove, breathtaking actually. There were hardly any cars yet. We stopped and hiked to the top and then I realized someone needed to go with Alana. Yes, that would be me. So we bombed down and she screamed and I laughed and we made our videos for the day. (New goal, at least one home video per day) I think I hiked to the top two times and this made me feel a lot better! The headache was not there at the moment and we are just having a great time. When our hands were to cold to keep going we drove back down to our house and the gate was frozen shut. We walked up to the house and the pond was blue. Like blue-blue. I can’t really explain it and the pictures are nice, but the fresh snow and evergreens and blue pond were almost too much. We weren’t just looking at the winter wonderland anymore we were physically in it!

I of course had preplanned and had soups on the stove in minutes and bread in the oven. The Keurig was up and running and we all warmed up with a nice late lunch. At this point, I’m still good. Someone mentioned last night, maybe it was the elevation, I don’t know, but it was nice. We went out and hiked all over the property. Went sledding down some buggy roads we’ve made and hiked to some of the highest points, taking pictures and watching the sun go down making a yellow glow on everything. At some point I just sat up on the mountain staring back at the house. It’s me and Madison’s spot. It’s hard to get up and super steep, but when you make it, you can see everything from a really cool perspective. We could see the snow still falling and after a while almost everyone had made it, and then made it down without dying. Because that part, wasn’t really something any of us were thinking about when we trudged up. Skip was in a sled, with a rake, and I just shook my head. That is THE worst idea ever, and we need to keep you alive.

We went back in and warmed up, played a little Trouble and packed up to leave. By now it was dark and the day was over, and the headache was coming back. I was thankful for the energy and the time away from feeling sick for a while. I couldn't believe how much I had hiked and never once felt off!! HUGE. I received a text from a sweet friend saying she was praying 1 Chronicles 4:10 over me, it just so happened to be “Let your hand be with me, and keep me from harm so that I will be free from pain.” And she had no idea. Thank you is never enough for those little prayers and notes.

Settling in back home I realized my quick downward spiral was due to an increase in temperature. I quickly drank water and went to bed. I haven’t slept well in four days now and that night, I got up at least 4 times. Some time in the night, I decided to look up Depocyt and there is a big warning box at the top for something to long to type and remember. I think its arachnoiditis. Sounds like a spider bite to me, but the first four signs are vomiting, nausea, headache and fever. Fever! Where does that even come in!? No one mentioned fever. So I progressed onto a hunt for ways to detox the spinal fluid. That was fun and interesting to see the many, many theories when in reality there is no lymphatic or filtering system for the spinal fluid. The most common things I read, and actually line up with what Valerie does is Yoga, exersize, acupuncture and deep sleep at night. It keeps the fluid circulating nicely. Herbal chinese teas are always beneficial as well, and seem to have healing properties that I’ll continue to explore. I have my stash and I tend to use it when I'm not feeling ill.

So I woke up Sunday morning planning on church and holy smokes my temperature is 101.6 and I feel like doo-doo. My head is on fire and I have no balance. Awesome. I called TWO paging systems because the first one didn’t go to my doctor and let me tell you when I got the on call doctor I almost lost my cool. He had to be 90, and if not, he was still drunk from the night before. I couldn’t understand a word he was saying and after begging him to just get in touch with my doctor so I didn’t have to explain everything and that I couldn't understand a word he was saying, he did. Of course after he said I need to go to the ER. Come on.

Dr. Dunbar called pretty quickly and that was her first reaction as well. She said I needed fluid, pain meds and steroids around the clock. The first thing I thought was “what the hell do you think I’ve been taking around the clock at home!!??” But I didn’t because I knew I wasn’t going to the ER. I was going to church. HAHA! She finally agreed and once again, my idea was better than a doctor’s. She called in extra prednisone and we double dosed, Tylenol for fever and lots of fluid. Guess what, after the first dose the headache was gone, and after the lunch dose, I was half way normal. By the evening I was able to take a walk around the neighborhood with the kids, go to Kroger and have movie night. All which would’ve been wiped away had we went to the ER. I was able to go to church with my ear plugs, met up with sweet friends and loved the message because all God kept reminding me of was how absolutely stubborn I am. It made me laugh, and I did promise the doctor and a few people I would head to the hospital if needed, but I knew it would be ok. He was just pointing it out. hehe.

One fun God story at church happened when I texted my doctor since childhood asking if they would be at the 11:00 service because I’d LOVE to grab a hug. I walked in and he was the second person I saw walking out of the auditorium! I’m pretty sure I haven’t seen him since he told me the news September 9^th. I bet I looked WAY better! Not begging for a shot of pain killer or in a heap of mess! Lol. It was SO good to see him and truly made my morning. The best part was I received a text that afternoon saying he never saw my text, and it just must’ve been a God meeting. I totally agree. With the few thousand people there each weekend, it’s pretty hard to run into everyone. Thanks for that Lord.

So here I sit, mostly headache free, insomniac laden, and yoga ready at oh, it was 5:30 AM, now 7:23. I had some good talk time with God and he gave me some good scripture to chew on for the day. We want healing, it’s bold and I know it isn’t likely, but I want it. We want to make every day count. Make lots of memories and be creative on how to make things for the kids to have and read in case my wants are not met. I pray for wisdom to make the right doctor decisions and wisdom for my doctors. To close doors that need to be closed, and a bright golden path to the ones that need to be opened. We are considering LA and have emailed the doctor out there. I go back and forth. I do know here, Dr. May will be over systemic disease ONLY from here on out and Dr. Dunbar will be over Leptomeingeal disease ONLY from here on out. I do not want the two working together, the communication is not going to happen or work the way my expectations need. That is very clear. Besides that, I feel like the doctor thing is stressing me out. When I have to come up with the ideas and they go that sounds great, I like it, but really, I don’t have the energy anymore. I want to trust my doctors but then I read a quote last night from Madison’s wise teacher, “The doctors are consultants, you are the expert.” And that is so true. You know your body better than they do, the holy spirit will guide you, and we’ve seen over and over where me and Kelly are one the exact same page. That is all any of us could ever ask for, it just feels like something is slipping.

I just have to keep praying it.

On the topic of prayer, Madison decided to add a “prayer requests” piece the night before and it made me so proud. She wanted to pray for the Goodwin Family as Will broke his leg. Daily prayers my sweet friends. Alana is praying for Mr Guinot and all our friends fighting cancer. I will say this. Alana leads most prayer, opens, closes, can’t stop, continues when we are done with those eyes of'just one more thing?' And when that child holds my hand and prays the words she does I feel God reaching right through her. I couldn’t get it out of my head in bed last night, but I asked God, does she have the gift of healing? She’s been reading about miracles and she is reading the Psalms lately. Anything that says “enemy” she has subbed for “cancer cells” at the moment. But there is something. Something I have never seen, or felt before. It’s strange, and I cannot get it out of my head. Like I know if I hold her hand that God is reaching through her. It’s probably just my brain wandering. Hope. Wanting to keep seeing miracles in this day like the disciples wrote about. Wanting to watch my kids grow in the Lord, because that day, if that day comes, where I lose this battle, that foundation is going to have to be the very rock they sit on. I picture them screaming at God sometimes and I know that will happen, but losing faith because of something like that is not something I can handle. That goes for Skip too. Eternity is way longer, and I’d really like to spend it with them. I’d really like to spend it with all of you…

Thankful this morning I could clear my head. This blogging thing helps so much. It’s computer therapy! Thank you for all the prayers and crazy support. We have our ups and we have our downs, the days we feel fantastic, and days getting out of bed is a hurdle, and without the unending love of our family, friends and strangers, this would not be the same story. Big love and hugs to so many.