Last night after getting settled, skip and I decided to grab a bite even though Atlanta time was nearing midnight. The first pub had a wait and a million people and the second no wait, but a million people! Thankfully we got this little corner spot and had a light dinner. We crashed at the hotel.
Morning came at 4:45AM for me, 7:45 ET and I decided I could soak while skip slept. I took the biggest bubble bath ever laughing as only my head was poking out. The girls and I were JUST talking about this of when they were younger! I giggled the entire time, remembering when I was little and loving bubble baths.
Skip got up and I snuck out to surprise him with Starbucks! (There is one in the hotel!!) We obviously got a crazy early start and found a close by breakfast joint. It opened at 7 and at 7:23 when we arrived there was a wait. By the time we sat down the line was down the block. The only time I've ever seen that was at Breakfast Club on Tybee. Well it was worth it, Hollywood cafe. Can I just say the fruit bowl was every fruit you can name off the top of your head, and probably enough for 4 people. We ordered breakfast too so it goes without saying "we were stuffed!!"
We hopped back in the car and decided to take the top down! Yes, we got a convertible as the next day we planned to drive to Santa Monica via 1 and thought it would be a blast! We decided we HAD to drive to the top of Lombard St and drive down it, except it was so much fun we did it again! Ear to ear smiles laughing at the ridiculous hills, crazy ups and scary descents!
We parked at Fishermans Wharf and walked around for a while. Noticed people swimming without wetsuits!!! It was insane and I know that water had to be cold!
Next we found the trolley start. All I ever wanted was to ride to the top and back down! Best $14 we ever spent! Can check that off my list now! Lol. "Went on a real trolley ride!" CHECK!!!
After the trolley we went back to hotel to chill for a while before heading to Benicia to see my pink little chemo sister! We stopped at a Trader Joes along the way and I'm sure we bought half the store so we could bring lunch so she didn't have to lift a finger!
We stopped at a little park on the way over, and over several FUN bridges may I add! We ran a special request for apple pie and finally made it.
Oh we hugged and hugged and we all introduced each other and the writing and charades began! I wasn't sure how well we would be able to communicate but It was never a problem!!! I brought her a Boogie Board which she was totally fascinated by and we wrote away. I'm completely obsessed with her voice! It's awesome and her emotions are the best! I had such an awesome time and it was truly a blessing to meet her. Skip made this happen and i can't thank him enough.
We travelled back so we would be able to go to a 6:00 service at the Grace Cathedral. It was a beautiful church in downtown and this service was held on the tiled replica of the old labyrinth that used to be there. I wasn't sure what to expect but was soon blown away. It was beautiful. I'm not sure I could put into words what we both experienced but we've talked about it every day since. Maybe for another blog post!
We walked back, down the steep steep road, and picked the first pub that was packed the night before and got a little something to hold us over for the night. Funny thing, the first night was way better! I have realized I'm obsessed with mashed potatoes for whatever reason. Random, can't eat enough of them!
That night I may have totaled 3 hours of sleep. It was rough. I woke up grumpy, sore, tired and we were leaving for Santa Monica! Coffee and granola bars it was and off we went. Once we got out of the city the views began to change and before we knew it we were driving through beautiful forests. We stopped at the first beach entry point we could find and to our surprise little sea otters were playing right there in this little pond! I even heard the little baby otter crying as it got too far out and the mama came and swooped it onto her belly! It was the sweetest!!!
Our next planned destination was in Big Sure and it was called Rocky Point Restaurant. Not only were the views stunning the food was phenomenal. After Skips fish tacos and my unreal seafood stew we went hiking to the cliffs. They had little paths around the property overlooking the awesome rocks and crashing waves. I had to hold on tight walking down and skip steadied me and made sure I didn't go over the edge. We sat at the top of this rock point and just stared off into the water for quite some time before leaving. The entire drive for the next two hours were twisty turny up down fast slow and most of all awesome. It was exactly what I dreamed it would be and more.
As we drove a little more I was about to look up where to see seals in California and to my surprise there is a sign that says seals viewing area in one mile. Shut up. That's so cool!! So we stopped and I couldn't stop laughing at these three elephant seals that looked like large dead fish. Finally one looks up, flips some sand on its back and plops his head back down. Farther down we see this giant beast of one, though I'm convinced it was a beached whale. Walking back the wind was so bad I could lean and not fall! So we drove to the popular viewin spot and oh. It was nasty. It smelled bad. A huge one was molting and skip says something about molting skin flying into your mouth. I'm done. Yay seals!
We veered away from the coast for a little while to make up some time and I decided to try to drive a while as I had never driven a convertible!! "Convertible!" Check! It was fun and gave skip a break, but it soon ended.
We ended up going through San Luis Obisco, Santa Barbara and then Malibu which was surprisingly was not as far from Santa Monica as I thought! We stopped near sunset at just the right time! The view was awesome the waves were crashing and of course I got my pants wet! Totally worth the spinning in the water, hands raised, so blown away at the gifts we had been blessed with the last two days. I was overjoyed. We stood and watched it completely disappear, in each other's arms with tears in my eyes.
By the time we hit Malibu it was dark and you could see into these mansions on the mountainside. We just kept pointing out and oooooing about how big and amazing they were.
We finally made it to the hotel dreaming about our tuna tacos at our favorite restaurant. So we quickly checked in, went and relaxed, ate and went back to the room. I was asleep as my head hit the pillow and was convinced I sleep walked even back from the restaurant. I finally slept with only one wake up and when I open my eyes this morning I saw daylight and smiled. I slept alleluia!!
We quickly pulled our belongings together, grabbed a bagel sandwich to go and made it to the MRI just in time. It was long but I'm glad we split up the brain and spine this time. That's such a long series. Two and a half hours later I went over to Dr Ks to check in and the radiology calls and says I need to come back one image isn't clear. Really!? It's only around the block but we have to drive. Only me!!
They weren't ready so we popped over to whole foods, grabbed a salad and some snacks and finished up my MRI. Went and saw Dr K and Minh. I saw her first and boy did we giggle. I love her! I told her about my Emory issues and laughed and then got into the more serious stuff. I showed her all of my symptoms and we talked about how the clear CSF and then the horrible scan could've happened. She said she didn't know and Dr Kesari said labs aren't always accurate. I guess that's why I'm LM if you've had two negative spinal taps, you have to get that third one! I can't imagine it grew in 2 weeks but I guess we are describing me, so anything is possible!
We talked about treatment options. We wants to try to get this back under control with high dose Alimta again plus Carbo every 4 weeks. Then if things look good we will introduce Opdivo. Had I known he wanted me in good shape for the Opdivo I would've done it last time. Oh well. We will have the opportunity again. I can't doubt that. He also mentioned IT Methotrexate but sounded like he wanted to see the spine results first and they weren't ready yet. He plans to speak with my doctor at Emory, then tomorrow at 9:45 I will meet with her and go over everything again to make sure we are ALL on the same page and I'll start the new dosing on Thursday of the next week.
Fortunately I'll be on rad steroids for my little Unicorn gathering but I'm accounting for this to not being easy. I may be wrong and it'll be a walk in the park, but I'm preparing this week for 2 doses of eh.
I'm currently on the plane and it's almost empty so Skip and I have a seat between us and I'm all stretched out! Best plane ride yet! Must remember the 4:00 Tuesday flight!!! Woohoo!
I guess I'll post a follow up to this after we visit with Dr Gogineni tomorrow to verify that the plan I heard today is actually still the plan after they talk. Thanks for all the crazy support and all the sweet texts I've had over the last few days! It's been a crazy ride burp was I can say I'm blessed by as well. More than half of what we've done this past year would've likely never been done in my lifetime so for me, that's cool.
Toodles until tomorrow!
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