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.