On the Road Again

During my slow summer months, I made a wack-a-doodle plan to make a journey to Johns Hopkins and go visit Nola in North Carolina.  We have some crafting friends in Virginia so we planned a weekend road trip for a visit.

First I traveled to Baltimore to see my expert doctor.  I'm feeling like I needed to travel on a budget so I bid on a room on Hotwire I got a room at Hotel Monaco for $120.  Hotel Monaco is a nice hotel in the middle of Baltimore.  It is a gorgeous history building.  But that means it isn't exactly mobility friendly for me.  Uneven brickside walks, stairs, long halls.  And I felt it.  But I was tired from travels so I got settled into my room and even ordered room service dinner....which was less than successful but did the job.  I thought I would share my lovely view.  It was hard to not feel claustrophobic but I've honestly had worse.  And I  wasn't going to be there long so it was fine.

Here are a few photos of beautiful Baltimore (not sure if that is punny or not).

In the morning, I got up way earlier than I would like as I needed to get a ride to Johns Hopkins and be there by 8:00. My appointment was at 8:30.  They got me in early to get my stats and I talked with a student fellow who checked me out and took my information and put it in the system and then I sat....and sat....and sat.  I was glad I had a plug for my phone.  I pulled a chair over so I could put up my feet.  After 1.25 hours, Dr. Christopher-Stine came in with a bound.

Poor woman was on call until 4:30 am.  She was exhausted.  She apologized profusely for being late.  I was her first appointment and all her rooms were full and the waiting room was over flowing as well.  She said the fellow brought her up to speed on how I was doing so we didn't really go over that again but she said she wanted me to consider joining a clinical trial.  I have to be post cancer treatments by 5 years so I am eligible in June 2019.  The trial might be full by then and I would have to go off my weekly Methotrexate shots for 3 months prior to joining and stay off for another 9 months.  I would also need to travel back to Johns Hopkins quarterly and that cost would not be covered by the trial.  But I would get a chance to get a new drug that is showing great promise in muscle diseases like mine.  It is a phase 2 trials so there is a placebo involvement.  It would be great to get the drug and it would suck to get the placebo.  But I don't need to make any choices until February.  I will check in with her then.

She also used her muscle measure machine and found me to be more weak which I kind of knew but it was tough to hear she could see marked decline.  This is the first time my deltoids measured a decrease.  My fingers too.  My ankles.  And my legs.  Not a damn thing I can do about it besides live my best life I can.  She warned me to stay as active as I can but to be careful not to further damage my muscles remaining.  She reminded me to watch my weight and nutrition.  We agreed to  keep in touch via messaging and she asked me to make an appointment for next year unless the trial comes up first.

I called an Uber and headed to the airport for the next part of the adventure.   I got to the airport way early so I had time to walk instead of have a wheelchair assist.  I stopped for lunch and then got a seated massage.  I was excited to see the restaurant I stopped at was based in Philadelphia.  So I was able to get a Chicken Philly Sandwich.  Which I love and have made a west coast attempt to copy over the years (my copy was spot on).  It was worth every single calorie and fat gram.

When I got to Raleigh, Nola came to pick me up.  I've started staying in a hotel in North Carolina because it is hard for me to get in Nola's house and her guest rooms are upstairs.  It works out okay and Doubletree was my home for the night.  They gave us both a hot cookie on check in.  Then we headed out to meet Gregg for dinner at Shuckin' Shack.

Shuckin' Shack is the place I love to go near the beach but they recently opened a restaurant close to Nola.  Same great food.  We shared a lb of steamed shrimp, hush puppies, and cole slaw.  Gregg got Crab Legs.  So yummy.  The "flare" from the beach location was missing (Those "salty sailors" were missing) but we still loved it.

I made plans to meet up with my co-worker, Phil.  He moved from New Hampshire to North Carolina.  In fact, he only lives about 15 minutes from Nola.  So we met up for lunch the next day.  I don't get to see Phil often.  We've worked together on our client for 12 years.  It was nice to catch up.

 After lunch, Nola and I made a stop at her house to pack up her stuff and visit her kitty Heidi.  Then we hit the road to Lynchburg, Virginia!  We chatted the whole drive and really enjoyed catching up and even stopped at a funny gas station for a snacks.  The south is just different and I always enjoy the local flare.  We made it to Lynchburg in time to check in, get settled, and rest a bit before we met our friends for dinner.

We met them at an old historic (the whole area was historic including our "not in a good way" hotel) train depot.  We sat on the big patio.  During our dinner, the train came through with the squeeking train wheels on the metal track.  The horn blazing.  It was a long train and everyone stopped to watch.  The smell the metal on metal filled the air.  Couldn't get much more genuine than that!!  What I can't believe is we didn't get photos of us together!!  Pretty sad for a group of scrapbooking women!

In the morning, we made our way over to our friend's house in Madison Heights which is a suburb/neighboring city to Lynchburg.  Willa Jean has been friends with us online for years and years.  It was fun to meet her face to face.  She told us to jump in her car so we could go see our friend, Angie's house, she and her hubby Jon built.  They live about 30 minutes away in the mountains.  I'm not kidding, it was like far away on an mountain populated by a few other die hard rustic living loving people.  It had been raining so Angie and Jon's road was pure mud and washed away with a big washed out trench we had to conquer.  Never fear, Jon got Willa Jean's van up the driveway.

Jon and Angie passed through Salt Lake over the summer and I met them while they were here.  It was nice to see them at their place.  They built a log home that they modeled after a train station.  They designed and built the home themselves.   Call me impressed.

This is inside their home.  Nola, Angie, Willa Jean, and Me

John on their front porch of the "cabin"

The James River runs along their mountain

We went back to Willa Jean's house for a day of scrapbooking and card making.  Willa Jean was so excited to meet us and have us come visit.  She really rolled out the red carpet for us.  She made us a Chicken Salad lunch and made a delicious pasta dinner complete with garlic bread.  I had my first ever glass of sweet tea.

We played and played with paper.  We made cards.  I also did a few page layouts.

Before we knew it, the day was done and Willa Jean's husband had come home from work (He is a postman).  Such a nice couple and so cute together.  It was fun to be together. I love scrapbooking with Nola.  And we each got about 15 Christmas cards done!  We were exhausted as we headed back to the hotel.

In the morning, we enjoyed a nice breakfast (I had biscuits and gravy because I was in the south) and then started our trek back to Raleigh for me to catch my flight home.

One thing we wanted to do before we left was to find a few "Love" signs.  Virginia's motto is "Virginia is for Lovers" and they have about 100 large "Love" signs around.  There were 2 right close to the hotel (see that southern flare rub off??) that we found.

Some more of Lynchburg

Why is the drive home longer than the drive anywhere??  But we did a great job making our way back and even had time to stop for lunch along the way and visit for a bit before dropping me off at the airport for the long ride home.

Old farmhouse along the way

Tobacco fields

Cool barns

I luckily had a direct flight so it was pretty easy although long.  With the time change, I was home and settled in by 9:00 pm!

We had so much fun.  It was a whirl-wind trip but I am glad I could get my body to do it and I always love seeing Nola and Gregg.  As you probably know, I yearn to live in North Carolina.  Maybe one day I will make that a reality.