Two weeks ago today at this time I was in the backseat of a car, trying desperately not to get carsick, on my way to John’s Hopkins Hospital with my mother and younger brother. My mom had finally gotten word that a skilled pediatric oncologist who specializes in tumor development was available to see her. This is the only guy that we know of who has seen multiple cases of her disease, and he is a forerunner in the race to find a way to shrink or eliminate the microphages/tumors growing throughout the body of ECD sufferers.
This is a good thing. We had waited for this appointment since around the first of the year, and I had been trying to convince my mother to go for it seems like ages. While I totally appreciate her perspective of not wanting to be a guinea pig or on display for a classroom, this guy merely wanted a consultation. He got copies of her tests for the last ten years and then just gave a cursory physical (listen to the chest wall, the heart, look at eyes and ears, etc.). When word had come a scant week before that he was available we made the arrangements to go quickly, my brother took some time off work, I found a dogsitter, and on a train we rode the day before.
It’s interesting, traveling with your parents as an adult. I love my mother, and I know she would say that we had a good time. Rightfully so, we did. But I think that four days of being not more than 20 feet away from one another is about two and a half more days of togetherness than I can stand. I was so ready to come home. I will say this about mom, though. When we travel together, and she’s in the right mood for it, it’s great because she is someone that will allow me to plug in and listen to NPR podcasts, read a book, take a nap, and basically just sit next to her with no conversation for the entire trip. It took her a bit on Tuesday morning to get there–I was in the Richmond train station with a book and I think that it was about 45 minutes, boarding, and beverage service before I got to turn the page–but the rest of the trip up and the hour wait for a ride was great. Of course, once the train got north of Ashland she was out like a light, which helps the process, but still it’s rare to find a traveling companion that will allow you to disconnect and do your own thing all the time. She is pretty good about that. (Notable exceptions would be the Richmond and Chicago Airport Incidents of 2000, the Monterey Hotel Experience of 2000, and the Florida Plantation Visit of 2004. But that is another posting.)
Once we got to Alexandria, and my brother was able to pick us up, we went to eat on the bay in Alexandria. You know, I’ve been going there my entire life, and I forget that the city is actually located on the water. I know that the bridges to get into the District are right there, but the touristy/waterside life is something that I was always a block down the street from. As always, the mini-vacation was about food–we found a fabulous restaurant that allowed us to sit on the water and order some amazing seafood. A fabulous crab, mango, and avocado timbale for an appetizer, yellowfin tuna for lunch/dinner for me, and then a hot chocolate hazelnut lava cake for dessert. Thank heavens my brother took me with him to his scuba lesson that night–I was able to swim over two miles to work off some of that rich food!
Anyway, the day of the hospital visit we ran our patootie’s off trying to find the right location. The directions from the doctor’s assistant were, at the very least, NOT helpful, and we had to walk the full length of the hospital (and it’s a BIG hospital!) twice before finding the right location. Then, of course, the hospital’s computers are not synchronized so even though my mother has paid a few thousand dollars in medical costs they had none of her information in the computer. Finally, FINALLY, we got in to see the doctor, which was a good visit. I think that, while he didn’t have any new and inspiring ideas right off the bat, he confirmed what her doctor’s had done to date and suggested a few alternatives that he would talk to her lead doc about, which more than anything gave her peace of mind about the treatment protocol that she has been following for the last few years. This doctor seems to think that she has had the disease much longer than anyone has predicted. She’s been diagnosed since 2000, and they think she started showing symptoms back in 1989 when she first started getting sick with the diabetes insipidus, but this guy thinks that her lung disease of the late 1970’s/early 1980’s may also be related as well. Considering most people that we have knowledge of with this disease live no more than five years after diagnosis, hey good going mom!
Afterward we drove over to the Baltimore harbor and went to a seafood buffet for lunch. A few blocks away from the hospital is the harbor, complete with tons of restaurants and novelty touristy shops. (Perfect for mom.) The walk was kinda far, but mom thought it was worth it because there was a Fudgery in the mall. Of course, she had to get fudge. She went to buy three bars, and then found out that if you bought five bars you get three more for free. Before the discount, that was EIGHTY DOLLARS of fudge. Her big purchase of the week. At that point, however, she was in a lot of pain–dashing through the hospital, two hours in consultation, walking to the restaurant . . . it was just too much. So my brother went to get the car. We found a loading dock to wait on, and waited in the rain for him to come pick us up.
The long ride home was over quickly for me, as I crashed in the back seat. Nothing beats carsickness like a nap, right? We chilled that night, and ordered pizza in, and in the meantime my brother and I managed to get my mother hooked on Top Chef and Hell’s Kitchen–neither one of which she had ever watched. Sucked right in, baby!
The next day was our last day, and really the only reason we stayed was so that I could have dinner with my father. He lives 30 minutes away from where we were, and I had not seen him but twice since Christmas so I was looking forward to dinner. At 10 in the morning, we started asking mom what she wanted to do that day. Evidently, although she said she wanted to go out, what she really wanted to do was watch The View and Today (the final, sucky hour). We ended up going to Herndon to a Mexican place for lunch, people watched for a bit, went shopping (separate post to follow on that), and then came home where mom cracked up watching us play guitar hero before it was time to leave for brother’s class and me to meet my father. Mom decided she didn’t want to stay at home, so she took the car this time to go to Tyson’s and then had directions to pick us up down the street as well as a GPS preprogrammed to show her where to go.
Dinner with my dad was great. We met at Tysons II (the snooty, upscale one) and ended up eating at PF Changs. We really did have a delightful time. No stress, just visiting, and after a fabulous dinner we strolled around the mall, got some coffee and people watched. One of the best visits I’ve had with my father in a long time, so it was great that I was able to stay and visit with him. He dropped me off at the rec center where my brother was so I was able to swim–slowly from all the food, but swim nonetheless. Mom was set to pick us up around 945. I had to wait for a shower, so I was a bit late, but when I got to the car I realized that it wasn’t my mother driving–it was some guy my brother knew. Mom, evidently was lost. In the parking lot at Tysons. Yep, that’s right, she never made it out of the mall lot. GPS be damned, she just drove in circles. We were standing at the Silver Dollar Diner on the side of a six lane each way highway jumping up and down like idiots because we were trying to get her attention.
Friday morning we had a 1012am train to catch. So we reserved a cab to pick us up at 845. At 600 my mother started trying to wake me up, convinced we were going to be late. Other than deflating the air mattress, I had showered and packed already so I swear to you I was ready to kill her. Of course, part of getting ready includes watching Today to see what Matt Lauer is up to this morning . . . again, I think this visit with my mother had gone on long enough. Our train, which was supposed to arrive at home at 1150am, didn’t even get to our originating station until 1120am. Again in business class, there were not two seats together. Mom was adamant that I was not old enough to ride the train by myself and needed a place to sit together. Um, hello???? I’ve been taking this train back and forth FOR OVER TWENTY YEARS, I think I can survive sitting in the row in front of you for a change, thank you very much. Besides, I needed the distraction. I plugged in the computer, plugged in the headphones, and listened to Wait Wait . . . Don’t Tell Me! all the way home. Once again, however, we had another delay 500 yards from the train station because of a hurricane-related storm that blew an electrical switch. Sat on the tracks forever, and didn’t get into the station until 245pm. What a mess.
On the way back to my house, in the rain, mom summed up the trip with this statement: “I can’t believe that they would build a hospital that prestigious in a location that is such a ghetto. Did you hear the doctor say that there was a 21-death gang shooting last weekend? I can’t believe I had to go to that part of town to see someone of his caliber.”
Sometimes, the woman just amazes me. Fabulous meals, a fantastic consultation, $80 of fudge, transportation problems, and the fact that stands out in her mind is that the hospital is in a ghetto. I just don’t get it.