I am up at 6:15 today to get the taxi at 6:45 to the Clinical Center. I arrive at the hospital before much is going on there. First stop is phlebotomy. I am taken back immediately into one of the phlebotomist cubicles. She informs me that they only need a urine sample. I don’t know if there has ever been a contest for such things, but I’m pretty sure I would be the worst at peeing in a cup. No matter how careful, I always get a little on my hands. So think about that next time you’re in the doctor’s office bathroom…I always do! Next, I am supposed to go to 3SW Procedure Unit. This is back in the new part of the hospital.
I walk through the door onto the unit. The corridor is bright with plenty of familiar, warm, recessed lighting. The flooring is also familiar, laminate with the appearance of mid-tone hardwood. It’s the same lighting and floor on the unit two floors up where I was prepped and then recovered from two difficult surgeries 13 years ago. I walk past a few rooms to the nurse’s station and give them my name. I am here for an IV catheter to be placed under ultrasound. I let them know that I still have my IV from the day before (I’m a rule breaker—what can I say?!?). The nurse suggests we check it to see if it is functioning.
We go into one of the rooms off of the corridor. It has the same warm lighting and two gurneys. I sit while she flushes the IV cath in my left arm and attempts to get blood return. This is how you tell if an IV is still in the vein and working well. If you can push saline and get blood when you pull back then it’s fully functional. My two-day-old IV flushes well but will not return blood. We decide she had better place another. She tightens a tourniquet above my right elbow and inspects my forearm with the ultrasound wand. She finds a vein on my ventral forearm and presses the catheter into my skin. I can see the black circular vein on the ultrasound screen. I can see the white dot of the needle attempting to enter. The vein flattens slightly with the pressure of the needle. Pressure, pinching, then it’s through. “Your veins are tough, like I had to push hard to get the needle through,” the nurse explains. I’ll add that to the list of adjectives for my veins: small, rolly… and now tough. My veins are actually a lot better than they used to be. Exercise, especially weight training, has been helpful for this.
I head back downstairs to the radiology department for my dotatate scan. While I’m sitting in the waiting room at nuclear medicine, an elderly woman in a wheelchair is pushed into my view. She is listening to the receptionist review the informed consent form. Suddenly someone asks for a trash can and an orderly appears around the corner with the can right as this woman vomits. My heart broke for her. The woman disappears, I presume, back into one of the dark rooms with a space heater. I’m left to wait and to think.
The combination of the familiarity of the procedure unit and watching this woman in her extremity brought me back 13 years. I remember staring down at my belly. The staples pulling into my flesh, keeping my swollen abdomen intact. It was unfamiliar, like being in someone else’s body. I looked up into the mirror to study my face. This too was unfamiliar. My eyes were sunken, creating an extra wrinkle in my eyelid that wasn’t supposed to be there. There was a garnet scab on the end of my nose. A token left by some nurse or tech who carelessly pulled the tape, that was securing my NG tube, off too quickly. I felt small and weak and bloated. Even a simple task like using the bathroom was complicated. The IV pole was shackled to my arm and the pole was seemingly cemented into the electrical plug. I wanted to get out of bed and walk to the bathroom so I could vomit in the sink, like a respectable person. I was alone, but even so, I felt I deserved this one dignity. I thought I was strong enough to make it, but that damn plug. It was my miscalculation.
An energetic tech calls my name from the hallway. As we walk, he lets me know that I’ll have to take my nap in the room with the PET machine because they are busy and the dark rooms are full. I think of the elderly woman and feel glad that she can have the spa treatment today in my place. She needs it. I sit in a padded reclining chair next to the PET conveyor belt. The tech flushes my IV—works perfectly. He lets me know that the dotatate will be delivered in about ten minutes and I’m left to recline under my warm blanket. No space heater but the blanket feels good.
The room is painted an icy blue color. On one wall is a painting of a wide river with a light dusting of snow on the banks and a red canoe with two men paddling downstream. On the other wall is a photograph of a Caribbean beach scene with white sand and turquoise water. It feels a little incongruent. I decide the blue walls are definitely an icy blue, not a Caribbean blue. The tech returns with a rectangular metal box. He sets it on the table, lifts the lid and pulls out a capped syringe with a 1/2” lead jacket. Another tech, a perky, young female I remember from last year, is standing next to a large digital timer that is behind me on a table. She cues him at exactly 8:31am to push the dotatate into my IV catheter. I taste the chemical and immediately feel nauseated. I remember this from last year. He flushes my IV and I taste the familiar saline.
Now I’m left to sit for 45 minutes. I settle in and read my book. After a while the research nurse, Marianne, is standing in front of me. She is a nurse practitioner and her job is to coordinate the patient visits (like mine) for my doctor. This is our first meeting. She is pleasant and we makes small talk about work, mostly. She asks questions about my psychiatry practice. I swear—talking with all of these doctors and providers here makes me miss my colleagues at home. People have an edge here. Is that an East Coast thing or a medicine thing? I think it’s both. I promise myself to continue to strive to be humble and teachable in my professional work. Talking to Marianne makes me miss Karen. Karen was in Marianne’s role until this Spring. Karen coordinated every NIH visit I’ve made. She was kind and passionate and familiar. Maybe Marianne will become that way too. I’ll give her 13 years before I decide.
More reading and finally it’s time to get in the machine. Gallium-68 dotatate is a tracer that has been found to be quite helpful in detecting neuroendocrine tumors. Some neuroendocrine tumors do not uptake glucose and therefore are not detectable with the FDG-PET I had yesterday. Dotatate mimics a hormone that neuroendocrine tumors DO uptake. So the dotatate is tagged with a radioactive tracer, circulated through my blood and I’m put through the same PET scan machine to see what lights up. This test takes about 40 minutes in the machine. I feel tired today so I try to sleep but it’s hard to get totally comfortable with my arms up over my head.
I’m out of the machine by 10am, just in time to miss breakfast *insert crying emoji.* I walk up to the cafeteria and pick out a couple of hard boiled eggs, an English muffin (there is no butter, only margarine—what planet are we on!?!) and some really sticky oatmeal. Ultimately I can’t eat the oatmeal because I’m still thinking of the woman who vomited this morning and it seems disturbingly similar in viscosity. I have two hours before my MRI so I head downstairs and grab the shuttle back to the hotel to relax for an hour.
I crank up the heat and lie in my bed, scrolling Instagram and then I decide to shut my eyes. Since becoming a mom, I have lost my capacity to nap. I HAVE, however, realized that there is benefit in lying in bed, closing your eyes and pretending to sleep. Some might call this REST. It seems less utilitarian than sleep, so on a regular basis I have to remind myself that there is value in REST. I redress in my winter clothes. It’s looking grayer and grayer outside, and I run down to catch the shuttle back.
I have an MRI at 12:45pm and I arrive right on time. The receptionist remembers me from yesterday. I get changed into the paper pjs and sit down in the waiting room next to a woman who looks about my age and healthy. I strike up a conversation about the obnoxiously loud vent fan over our heads. Pretty soon she is telling me that one year ago in the Spring she was found to have an orange-sized tumor in her brain. She said it went undiagnosed for a long time because the physicians she saw assumed her symptoms were related to stress or depression. She began to lose the ability to write, to speak, to think clearly. Finally her psychiatrist asked her to write something with a pen on a page and she was unable to do it. She was immediately referred to the ER in her small-town, West Virginia hospital for a CT scan. Two days later she was having brain surgery in DC to remove the tumor. I asked about the recovery from that and she said she doesn’t remember much, “I was so out of it by the time they found the tumor.” Thankfully she has made an almost-full recovery. I’m reminded of the zebras and hoofbeats again. She has an eight-year-old daughter. She spoke optimistically to me about her prognosis. I can’t help but wonder if she really feels that way. I’m sure I sounded the same when talking to strangers when I was only a year and a half in.
A tech comes through the double doors and I’m escorted back to the MRI. This is the same procedure as yesterday, except it’s just for my neck so only about 20 minutes and no contrast. He puts a bracket over my neck that serves as an “antenna” by his description. My head is in a foam block with cutout shaped roughly like the back of one’s head. I remembered today that I forgot to mention the electric bassoon noise! I’ve never heard an electric bassoon, but I’m pretty sure the MRI has that down! I ask the tech to remove my IV when we finish because I won’t need it again until Monday and they make my arm a little sore. He pulls off the tape dressing which rips all of the hair off of my arm. “Damn!” I say, and he laughs (in a good-natured sort of way).
“You get what you pay for,” he says. I change out of the paper clothes and I’m on my way out the front door of the hospital. I walk down the hill to the Metro station to catch a train to Farragut North again. I decided, during my rest, to visit the National Geographic Museum. I sit down on the train and realize I am riding right behind St. Nick! I’m staying open, right? So instead of smiling and keeping my distance, like I usually would, I scoot up a row to the seat right next to Santa Claus, introduce myself and ask him for a photo. I justify it by letting him know about that I have a son, back home, who would get a kick out of mommy seeing Santa Clause. He is dressed in a Santa hat, a casual, cotton, button-down shirt and jeans. He gives me a couple of souvenir coins with Santa stamped on them to give to R. I thank him and move back to the row behind him, but then I decide—why not talk to Santa?!?
So I scoot back up there and ask, “Do you live around here?” He is doing a great job of staying in character. He tells me he bought an old government bunker and he has a workshop set up there. Today he is on his way to check in for the Marine Corps Marathon. He has been running marathons for 18 years and he runs more than 200 miles per year in races for charity—and that doesn’t even touch on the training he does.
For the record, he does not look like a marathon runner. He looks like Santa Clause…on his way to Home Depot. He tells me about his walk/run interval training strategy. He doesn’t listen to music, or audiobooks, or anything when he runs. Freaking fascinating. As we approach my stop, he waves to a little girl in a stroller that is checking him out from across the train car. I thank him for the picture, the coins and the company and say goodbye to Santa Claus. He’ll be running the Marine Corps Marathon on Sunday if you need to find him!
The National Geographic museum is interesting but pretty quick. There is an interactive, virtual-reality exhibit of the Church of the Holy Sepulchre in Jerusalem. The VR is pretty impressive. The other exhibit contains items and history from the Titanic, including a couple of costumes worn by Leonardo DiCaprio and Kate Winslet in the film (AND some things that ACTUALLY went down with the ship!). I finish up in there after about an hour, so I grab my phone to see what is close. I decide to try the National Museum of Women in the Arts. I get there at 4pm, one hour before close and it’s $10 to get in so I decide to look around the gift shop for a bit and maybe come back tomorrow. I overhear that they are letting people into the museum for free because they are setting up for an event so I wander into the museum. It’s got a great energy. Walking through the exhibits, I can’t help but think of this line from A Star is Born:
“Jack talked about how music is essentially twelve notes between any octave. Twelve notes and the octave repeats. It’s the same story told over and over, forever. All any artist can offer the world is how they see those twelve notes. That’s it. He loved how you see them.”
I contemplate my sisters throughout history who have struggled to to offer their vision to the world. It’s the same story, told over and over, forever. And it’s STILL worth telling. I thought about the women who have tried to play by the rules of a man’s world. I thought about well-intentioned mothers who teach their daughters how to navigate these rules instead of how to overthrow them. I thought about gems within these women. Their vision. Their art. The longer I live, the more I realize that no one is served by anyone playing small. For myself and those I love, I want the biggest and most genuine existence. Elizabeth Gilbert says it this way:
“A creative life is an amplified life. It’s a bigger life, a happier life, an expanded life, and a hell of a lot more interesting life. Living in this manner—continually and stubbornly bringing forth the jewels that are hidden within you—is a fine art, in and of itself.” Big Magic: Creative Living Beyond Fear
Let’s be open. Let’s be curious. Let’s find the jewels hidden within. Namaste.