From California to NC- Ocrevus, Elezanumab, Clinical Trials, Homeschooling, and a freaking long distance relationship with my Husband?!? Part Two

We set a target departure time for 12 pm on Monday. However, the trailer wasn’t ready yet, nor was I really. Though I started packing weeks ago, there were so many loose ends, and loose clothing… I was grateful for those extra hours. We started out at 7 pm, bidding farewell to a Southern California sunset. I had to big worries about the trip. One, was that I would start having worse spasticity from sitting for extended periods of time. The other was that I would fail to help my husband when we needed to find food, a place to stay at night, due to cog fog. I had downloaded a few apps to help, including Roadtrippers, but in the end, it just seemed yelp was most reliable.

The first night we drove through Las Vegas. I was all curiousity to see if the city of lights was still lit, or if it had turned into a ghost town. Lights were still blazing, on signs, but the windows of the thousands of rooms that lit up those towers, were conspicuously dark.

While kids slept in the car and my husband waited, I went into the first dispensary since the beginning of the pandemic. In So Cal I was lucky enough to benefit from dispensaries that delivered my medical cannabis. I went in masked and a little nervous. However, everyone working there was helpful, recognized that I needed assistance, due to my disability, and offered helpful suggestions. So I got a Super Sour D vape pen, some edibles that I knew relieved my spasticity. The kids woke up thought it was nearly midnight, and got to see the bright lights of the city. Still lit up, but a present a sense of the hustle and bustle for the insomniac city. It set the tone for traveling across the country during a pandemic. Everything was slightly different, as Covid 19 is being felt everywhere.

We pushed on and the kids fell back asleep. Our goal was to stay the night in Mesquite and I found an option for an RV park attached to a hotel/ resort. However, we needed a pull through for the night. A pull through means a spot where you can do just that, pull through, instead of having to back your trailer up and unhitch. I had to check in at the Casino, mask on. It was late, and I was a bit dazed as I looked at the slot machines, with a few people peppered here and there. Nothing weirder than ending your at home quarantine by going into a casino. Then the clerk told me “I’m sorry M’am your card is declining.” We were helping finance our road trip by using my prepaid EDD card. My large charge at a Las Vegas dispensary at nearly midnight would understandably set off a fraud alert. I walked the hundred yards back and forth. Exhausted we finally found the parking lot down the street, pulled through, hooked up. The kids were awake. We wanted so badly to sleep. So we told the kids to enjoy their bed at the other end of the trailer. We hadn’t stabilized the trailer for the night as we were so tired, and new to RV life. The whole trailer rocked as our kids played till four in the morning. The rocking motions made me remember two years ago, when we took our first cruise through the Mediterranean sea. At some point the kids feel asleep.

The next morning we got off late, we lost about an hour per day going across time zones throughout the trip, so we got late starts, and drove late into the day. That day was spent traveling up through Utah, through beautiful Red Rock. We drove through streams of red rock, towering on either side. Our destination for the night was Moab, via Coral Reef National Preserve. The kids were already getting bored, but they were good sports and hung in there. My father in law had gifted a telescope to my daughter, and we promised her that night in Moab we would look at the stars. I found a Campground, a bit away from the small city’s lights. So we proceeded through the red towering rocks, on our way to the stars.

That night we stabilized the trailer, I cooked dinner, and we watched the stars and got a closer look at Jupiter and Saturn. We awoke to the beauty of Red Rock, and decided to try taking the trailer through Arches National Park. Here I’m gonna show, rather than tell.

Our next stop was meant to be the four corners. However, casually looking at yelp reviews I saw a one star reviews. Why would someone rate the four corners so poorly? Because the monument was closed, as are all Navajo Nation monuments. The Navajo Nation has been hit hard by Covid19. We drove through the town next to the monument, and the place echoed the silence of the Bright Light City. Tumbleweeds, and empty spaces.

New Mexico, Texas, Arkansas and finally Memphis Tennessee. We planned to stay the night at Tom Sayer RV Park. I was drawn in by the name, and it was right on the Mississippi River. I laid in the kids bed with them til they fell asleep. By now the newness of this trailer life was wearing off, and they longed for the extra comfort they’ve gotten used to during the pandemic.

We stepped out of the trailer to have a look around, but wherever there was light, it revealed the flurry of activity that had been absent in Vegas. Mosquitoes everywhere! Of course they were thriving along the banks of the Mississippi. My husband the next day scratched his bites as I handed him anti itch cream and lavender oil to soothe them.

Traditionally I’ve gotten eaten up by mosquitoes every summer, growing up in the south. I marveled at my bite free arms and legs. Over the coming weeks I experimented. I found that the mosquitoes were still landling and sampling, but my immune response was different. Barely a mark would show up. I’ve come up with a theory that Ocrevus was calming down my immune response, and that includes the response to mosquito bites. Again, only a theory. 😊 🦟

We decided to take it easy and stop at an RV resort in Nashville and treat ourselves. There was expected flash flooding in the mountains of Tennessee and N.C. and we didn’t want to deal with that at the end of our trip. For the first time I booked a non pull through and my husband expertly backed through trailer up on the tight space on a narrow peninsula by the lake. The rain was pouring down. I’d never been more impressed.

I placed an order at a Thai restaurant and he went to pick it up. He moved the picnic table under the awning of our trailer and we enjoyed our dinner looking while the rain fell on the lake.

The next day it was on to North Carolina, and my parents house. As my husband and I enriched our relationship through this crosscountry experience, I didn’t want to see him leave in two days. My adrenaline carried me through the cross country trip, but after he left I felt the exhaustion come on in waves. I’m so thankful for the experience we got to have as a family, for my kids being patient, for my husband being willing to drive us across the country, and the good fortune we had to arrive without major trouble or incident. I heaved a sign of relief when he got safely back to our home in Anaheim.

We still don’t know when we will be able to return. I’ve been trying to figure out the continuance of my clinical trial of Elezanumab. So far, I’ve been able to continue the observation period via phone interviews, after receiving the twelve infusions over the course of a year. I’m nervous about how to continue participation into phase three, once recruitment begins again. It should at least be one more year, but I’ll know more once this trial concludes. Playing it by ear as this pandemic rages on around us. Stay safe and may God be with you til we meet again. 🧡

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