!EMOH

It's home spelled backward. I have no reason, just first thing that popped in my head. weird!

Oh the journey of a camper. It was quite liberating to decide that we would be selling it when we get home. It was fabulous, don’t get me wrong, and exactly what we have always wanted to do, but we feel like it will compete with Ellijay. Everyone in the car also agreed they would rather stay in a condo for a week on the beach, be able to drive 80 on the freeway, and throw the bikes on the back with all wheels attached. It was an awesome trip, but had a pretty good clue beforehand that this would be a one hit wonder. So, if you know anyone shopping for a camper, let me know!

Our last stretch we decided had to be St. Louis home. We were worked. Mega jaw breakers and the Flash series were a double win and continue to be! Like obsessed with the Flash series. Cannot wait to see our data usage and bill this month!

The last turn into our neighborhood resulted in a sway bar ripped off the trailer, yukon’s electrics going ape crazy and then good couple of gallons of water pouring out the back of my car. At least we finally found out why the floorboards are always wet! AC drainage block! Woohoo! So never so happy to be home and what impeccable timing. We arrived around 2:30AM, I helped Skip unpack until 3:30 when I physically could stand no longer, and he went on until 4:30 even going to the point of driving the camper to it’s parking spot! Needless to say we were SO glad we now had the extra day to veg out especially when 4 hours after breakfast I get mad sick with who knows what at this point. Body purged and I was weak for the day. I was on the blood pressure theory and pegged it. I’ve been super dizzy since we have been home. I think now that I have longer ways to walk since we were living in a car and camper, it’s hit me more.

I went to my PCP yesterday who orded bloodwork and an echocardiogram which I get tomorrow. Something has to be up, but as usual my bloodwork is glorious and I’m just a healthy everyday 30 something year old. Right!? I dream it and picture cancer cells being shot and blowing up in my brain and wherever. I was very happy to see my ALT’s at a what I think is an all time low. So that’s cool, and likely liver is doing really well. My bilirubin was up 1 point, which is rare, but is what it is.

I still have eye issues too. I know, laugh. I’ve tried nearly everything and have decided it must be an allergy. So, the new plan is to wash everything in my bedroom and not let the dog sleep near me. IT’s a long shot, but worth it. Oh, and no mushrooms, hot dogs, shrimp or chocolate. I was allergic to those four things for sure as a child so I’m cutting them out. I cannot remember everything, I think aged cheese was a no no, which is the most lame of all, but I’ve went on a strict diet again anyhow. We made a huge list and Skip went on a two hour Kroger hunt (they’ve moved every isle and its miserable now) which is a huge act of service for him because it may be his least favorite errand on the planet. And yes, I said two hours.

But, we’ve had chicken soup and salad, a night of organic chili, and chicken with mash cauliflower! I picked some easy throw in the pot healthy dishes and it hasn’t been to hard. Hoping for some Tuna a friend brought with rice and asparagus tomorrow and then we will likely be off to ellijay. In our car. No camper. The pond was at an all time low and we have so much work to do still. So camper sells and we do some big work!! We were planning it along the drive.  Again, anyone know anyone needing a brand new camper??!! We are hoping to sell it at the place we bought it as there was a little scammy scamming going on and I had a dream I marched in there with my “legal advice” my dad, and went off. Instead I actually did go off to someone I didn’t realize worked there and now we are waiting a response. Little confusion on names. WHOOPS! Actually it was a dream come true.

Today we slept in less, Madison had a sleepover where they were challenged all-nighter by a friend and my child won’t be beat. So, after finaly getting close to Eastern time zone again, she botched it all up. So tonight, 10:00 bed time for all, BUT I just saw lights on, so who knows. I’ll send her pink lectric guitar playing daddy in there soon.

I do have some exciting news. I believe in the last week or so I have messaged with at least 3 LM sisters. People with what I have are finding me and I have the chance to tell them my story! Friends of friends, google searching, Lepromeningeal Metastsis Facebook page! All people looking for a little support, a little extra love, and a whole lot of hope. And it’s not just LM sisters, it’s chemo and cancer buddies now from around the globe. I try to limit how much time I spend, but some of these people I just can’t stop talking to. I love advocating for others and showing them they can do this! I’ll be alive 6 months longer than was ever expected next week when I was told I had LM. You know how cool that is!?! That said, I’ve had to fight the fury a little more. I had a little flip out email starting to think something was wrong with me… I love getting the email back that says, “you have a lot of doctors are watching out for you.” Sigh, I know better, enjoy the day, we are blessed and my miracle is just working its way to completion.

The next two weeks are looney tooney. After the fourth of July (hoping for an at home chill night) we head to Emory for my scans. A full day of MRI’s and PET. Yippee! It might be the 6^th. Well, anyway, the 7^th will be my last day at NorthSide Atlanta Cancer Care with Dr. May, and my first day at Emory with Dr. Gogoneni. Mucho love for Kelly who was such a huge part of my miracles. It is a hard leave, but something was missing and God tapped me on the shoulder for a good week before I made my decision. It was clear as day that the move was necessary and now I put my trust in Keethri and Santosh. Both doctors who have been beautifully in touch via email making this move so easy on me. I have so much respect for Dr Gogoneni as she was the doctor who was willing to read my September notes without me coming to Emory, called me, and gave me a third opinion. She called me twice and I just keep getting drawn back to her compassion.

I already miss my bestie nurses. But as in all good friendships I do remember that God puts people in your life either for a reason, a season or a lifetime. This season is over and a new begins next week. Emory is not my favorite of places due to the insane traffic, waits and amounts of people, but they’re doing amazing things and working with my cali doctor will be a fantastic as they actually do not have any breast patients on Opdivo. So hopfully, they can learn from each other. I’m excited. And a little nervous.

I hope I haven’t left out too many details. I had to take a few days from blogging. 

So the summary, we are home safe and sound, I’ll write about the trip as a whole later which I’m sure many of you are going to imagine yourselves, we are ridding of the camper, starting at emory next week, Going to Santa Monica the following week and from there we see how I do. We pray for no side effects, for immune therapy to not only work but blow the doctors away how fast and how much it cures. Our miracle is close. I can feel it. Summer is going to be basically over by the end of all of this, and a new school year beginning.

Be looking out for a new blog explaining the entire trip in a nutshell, hardest parts, best parts, easy parts and miserable parts. I think it'll be a fun story of real life. 

Salina Kansas and St. Lewis

I've likely lost a day but hello St. Louis! Cool little city, great arch and kudos Four Seasons and government buildings for their Orlando support! Rainbows seemed to be everywhere.

We drove all the Way from Salina Kansas from Fort Collins Colorado yesterday, never seeing rce but running from wicked storms the entire way, a good 10 plus or so journey, but we did get to stop in for a fantastic meal in what seemed to be a ghost town. It was a fantastic German Brewery, Gallows.

When I saw the Brewben and he told me it’s one of the most popular picks and they are located in a predominately German area, I knew it was going to be in fine battle with Frankfurt Donor in Ballground. It was delicious and I would say tie, but Frankfurt Donor had a little better and more sauce. They did have the best creamed spinach I’ve ever had in my life and I think I know exactly how to make it.

Why in the world am I even talking about food!?!? We found a little Burger joint open and it was slammed. The burgers were okay, but the dessert, the homemade, all natural, no artificial flavoring, ice cream, was delish. I ordered one scoop, but apparently everyone else ended up with like 4. Lol. I should have just tried theirs and called it a day, because 1 scoop was so rich, I couldn’t. And I do my best to avoid sugar at all cost, but I cave at caramel. Yum, to salted caramel.

I’m laying here in the RV with earplugs in and I’m ready to call it a night. It’s been 3 days now of extremely long and hard days. We’ve decided to take it short tomorrow (we hope) and pop over to Louisville early in the day. Plan is to chill, rest and recoup and then head home for another long day of travels Monday. But then that is it! I had thought early on yay no chemo so we can stay out and play longer, but my husband I forgot kind of has to be back to work.

So I’m hoping we can do some fun days of whatever over the next week. I’m feeling pretty well off chemo and love it so much. To be on a trip, finding youself mostly in the middle of nowhere with terrible food options, it has been SO hard to eat well. I have put meat back into my diet as my BP had still extremely low and I’m hoping not due to anemia, or anything really. I think the last reading was 88/45 and I was faint and weak. I looked up natural ways to help boost it, so I’ve also added a little more salt and caffeine. Today I checked it and back to normal, so I guess it is helping already and its only been a couple of days. Sweet.

I was trying to think if anything else has happened but I don’t think so. It’s been mostly a calm day. Pretty sure Skip is close to done, and hoping the break tomorrow helps. Hope that it doesn’t take very long to get there and that we arrive early enough to enjoy it all. I think all are exhausted and need a good day of sleep and pajamas, but we are still laughing, playful and more loving to one another than ever before.  Miracles happen in the strangest of ways.

N

Bryce to Ft. Collins

We have 5 days left of our journey, yet I am just getting started. All of that was a warm up, now I’m in the groove! Today was a driving day and we decided to knock out as many hours as possible. I think our estimated arrival in CO is around midnight or 1 AM. 

We left around 11 this morning and we were able to see the tunnel we drove into when we arrived. It was super neat! We were shocked at the continued scenery all the way through Wyoming. We decided not to go through it, but over it. Kind of like Marlin did, and boy were we glad we did. There were a couple of pretty significant grades and they were not even close to the percentage of what we have climbed so far. Worth the 200 extra miles.

Currently we are 2:48 out from Fort Collins where we have a KOA reservation. Then tomorrow we go from there. Part of the long drive was originally to get us home on time, but along the way we saw bike trails over the mountains and amazing homes along the mountains that reminded me of Winter Park. I think for 3-4 summers I’ve asked Skip to go but he always said before he went to a Whistler type park again, that he wanted to build up his jumps. So the years went by and we are closer than ever.

When he said lets take a day there, I cried. He offered to drive as long as it took and would do whatever he needed to to make it hppen, if that is what I wanted. Are you kidding?! I’m not sure it is possible really because we have Jax and likely cant get a camper to Trestle (I saw the roads! They are the tightest zig zags I have ever seen. And, I think it’s more than a day trip. I almost think we need to drive back out with other camper people, family and bike buddies and stay for several days. Then again, I would love to just ride up the lifts once, put on a ton of armor and tear off down. It’s kind of a crazy dream. It’s baby Whistler within driving distance… Would you?

I’m going to give Skip some company, I think the Avengers for the 800^th time isn’t as entertaining. We didn’t get as many pictures but we did enjoy one another’s company for the second entire day. Learn a lot? Oh my, we are closer than ever without threats, without whining, just loving and respectful to each other. It’s another good day, another God miracle. I mean, all the girls played the biggest game of dots and I never heard “MAdiSOn!??” Huge.

Will check in tomorrow to see if we head home or play hard!

XO

Bryce Exploration Day Two & Three

Yesterday was simply awesome. We chilled out, slept in and then had a down day for the most part. We played family games like chinese checkers and war and did our best to stay tech free. When it cooled off and the distant thunder ceased we decided to go exploring. Apparently, Bryce Canyon was .04 miles from our RV Park! That was a pleasant surprise. We quickly decided that we would drive to the end of the park first and anything we didn’t do we would save for the next.

Our first stop was Rainbow point. There are simply no words. In my opinion it blew away the Grand Canyon. We didn’t stay long as the bugs were not cooperating there but every stop on the way down was just as awesome. EVERY ONE. The sun was setting and I really wanted to get to Sunset point as the sun was setting soon and it was perfect. I couldn’t keep my eyes off of it. I decided to go out on a ledge and soak it all on but I couldn’t get too far as my fear and dizziness of heights wasn’t going to let me. Good choice, but soooo neat.

Then I saw it, Inspiration Point ½ mile on the trail. We had looked on the way up AND down and never found it. So we decided that, sunrise point, and the Navajo trail into the Canyon would have to wait until the next day.

We came back and roasted hot dogs and smore’s and enjoyed a very peaceful evening outside. The temperature is in the mid 80’s so far and the night I had on sweats and I was snuggled in a blanket! I love the heat, but this was nice.

So that next day is now today and we took our time again. Actaully I think all the females slept until after 10 AM which is lunch time in Atlanta. Oops. Madison said she wished she had bacon and while we were at the laundry we popped over to the Office and I almost didn’t go in but they had a drink/ice cream cooler in the very back, filled with those, and bacon! We were cracking up. Of all things, there were 2 packs of bacon and a few packs of something else. So weird.

I fixed breakfast and Madison and Skip went to pick up our laundry and came in saying, “we aren’t going to meet those weird people in RV, we ARE those weird people in RV.” They were SO right. When I went with Madison, we put all out clothes in the big dryer, not the washers and had to move it all. Oh, we had already paid, so someone got a free dry. Then we are trying to separate it all because it wont fit into one, and who KNOWS what went on with Skip and Madison.

Breakfast ROCKED with bacon and eggs and toast and then we played more war and a game of memory, and mom still has one! My short term memory is awful, but I refuse to let it get me. I must play once a week so it stays working, and I’ve always been the champion up until recently when Madison won for the first time.

Skip pulled all the bikes off with Alana for the first time and we got ready to ride the Bryce greenway path, I think it is called Red Rock or something. It was 3 miles steady up, on which I pedaled as fast as some hikers were walking but when it came to the 3 miles back and down, dude, I was in heaven. It was winding and smooth and I have no idea what speed I hit, but I know the lady the day before told me she hit 25 and I know my bike goes faster than that! It was like flying and there was nothing that was going to wipe the grin from my face. Especially when I turned around and Alana wasn’t too far behind! YEAH! Skip and Madison continue the additional 2 miles to the top of Inspiration Point and Alana and I headed back. I got a text asking if we wanted to drive up later since I had missed it, but there was a mega hike to the overlook. Why not.

We had taco night and realized we only had 35 minutes to sunset so we hopped into the car and made our way up. We saw deer and an antelope family along the way! When I saw where the parking lot was and where I was actually going, I wasn’t sure 11 minutes was going to be enough time. About half way up, Skip pushed, and each girl grabbed a wrist and they literally drug me up the hill. Laughing, feet moving along and about ¼ way left, they were even wiped. But we never stopped and it must’ve been 8:53 not 8:35, because we still had a little way to go on the sunset.

We took pictures and made our way around the overlook, but my favorite was after it set. We sat on a log silently, staring out, then going around finding out what everyone loved most about our trip and finally everyone was gone. We walked back over to the point and just held hands staring out. It was lovely. Alone. Just the four of us and I’m pretty sure we all had a moment. We said our good night prayers on a ledge looking over the most amazing canyon I had ever seen, hand in hand. It was perfect.

Going down was much easier and we stopped to get a little ice cream and waters on the way back. Now we are cleaned up, calming and going to bed. The goal was to hit the canyon trail as Alana was begging to do it today, so we thought let’s wake up early. Hm. It says 12:30AM, I’m not sure that will happen though. We are supposed to leave tomorrow, but where we go, no one knows. We are also supposed to be home Monday, which means we need to get hauling with not many stops along the way, so wish us luck, love, and safe travels! So far so awesome as Skip is a natural and obviously has an angel and a unicorn protecting him every mile of the way.

I’m guessing we will make some album some time with all of the pictures that we can share a link to eventually, but I think we need to get onto our home wifi before that happens.

Love to all, we are finally finding some peace now that we’ve slowed down again.

XO, I’m sore!!

Bryce! We made it!

Monday Weekly News:

There is not much to report other than my eyes decided to swell again. Everything seems to be the same for now and all appointments are scheduled for July.

We arrived at Bryce Canyon after 10 hours of traveling and pit stops. We stocked up at the local Walmart and made a pit stop to gather some items at the Camping World hoping to make our 3 night stay more pleasant. We saw SO many amazing places along the way, beautiful sights that just took your breathe away. We even drove through a “tunnel” or basically a rock arch and through cut rock. It was 8 our time, the sun was setting on the beautiful plain and we were having a God moment going around saying what we were thankful for and the answers were lovely, it made you have to pray.  We went over the Colorado River, through Angel Wing Park, and right before Bryce, the elevation was 7777. I was pretty sure God was just reminding us it’s all about him. All four of us. We unhooked and crashed out, all were wiped.

We slept until noon, played a few games, made breakfast and lunch and after a few claps of thunder and a little rain passed we decided to drive into the park. What we didn’t know was that it was .04 miles up the road! There is a greenway from the campground literally through the entire park that we will likely explore tomorrow, but today we drove to the very end, Rainbow point and we were in awe. It was maybe the most beautiful scenery we had seen along the entire trip. The Grand Canyon is neat and definitely worth a visit, but this was insane. It looked like when you get a bucket of wet sand at the beach and squeeze it through your hand to make those little sand piles. The tops were amazing. You could see forever away. The air was cool, I drove, and we just stopped and scenic points along the way. We saw a big arch, what they call a natural bridge too!

We didn’t see any animals today but I think we saw proghorns and a few chipmunck, and several normal deer last night. I’m really hoping we see some antelope or moose! Oh Skip and Madison tried sending a billy goat and three young sheep back into their fence. They were on the road where we stopped so Alana could potty and they were all 4 there outside their fence. They got two in, but the other two were too spooked so we left.

A little way up the steep mountain, along an overlook, we saw the Colorado River from another perspective and local vendors were all around. Alana spent money on hers, Madison talked me into saying I owed her money anyway, hm, and I bought a couple more Christmas Ornaments! I figure I’m on 2021 and how cool to have a 5 year anniversary ornament handmade by local artists form our trip. I thought it was awesome.

We came home around sunset, just an awesome view, and made some dinner by the fire, and roasted hot dogs and then smores. I lost count at how many were eaten but they were happy. We did a few pictures, threw a little football and now I’m laying in bed, hoping to have the energy to do more. I saw so many “epic” rides close by for mountain biking and it hurts. I want to tear it up so badly. A year ago, I was racing. Right now, I can’t hike ½ mile. I’m going to find a maybe easier trail than black diamond and hope to get Skip out there for some epic rides too.

So far, this is my favorite stop next to the Painted Desert and Petrified Forest.

We are trying to determine our route home still. We either go up and around, a north route that takes us through more states, or back the way we came which is in my opinion lame. Third option, sell it all while we are out here and fly home. Lol. It was seriously a legit option this morning. The kids are cute, but they are really hard also.

Okay, Im about to fall aleep. Love to all.