!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.