I got a really good night’s sleep last night and woke up feeling pretty good at 6:30am. I am in the lobby at 7am again, this time taking the NIH-ordered taxi to campus. I have a study at 7:30am so I can’t wait for the shuttle. The taxi pulls onto campus. A security guard scans my ID and the swabs the car for explosives while my taxi driver checks in with the security office. We drive past the Children’s Inn on the right. This is a large, but friendly looking structure that houses families of children visiting NIH. I stayed here on my visits to NIH until I turned 25. My family stayed here twice while I was having surgery in the hospital. It’s a lovely, well-run place with lots of activities and amenities geared towards children.
I arrive at the Clinical Center and walk back to nuclear medicine. It feels warmer in here today and I swear I can feel heat coming out of the vent in the ceiling—what?!? I still keep my coat and hoodie on over my long sleeve tee. I complete some paper work about not being pregnant and how radiation can make you sick, burn you, destroy you… you know, standard informed consent. Fine, fine. Where do I sign?
The tech brings me back to a little room with a vinyl, padded arm chair. I sit and he turns on a space heater *angels start singing the Hallelujah Chorus.* He explains that we have to wait about ten minutes for the tracer to arrive. He flushes my IV (the one from yesterday—still good!). The tracer is fluorodeoxyglucose, essentially radioactive sugar. It is decaying (releasing radioactive particles) from the time it leave wherever it’s made so timing is important with a PET scan. The tracer arrives in a lead cylinder about the size of a tall pop can. The tech unscrews the top off completely, revealing a syringe, encased in the top of the lead cylinder. The needle is pointing out, ready to go. He holds the lead top by the handle and guides the needle into the two-lumen catheter and injects the tracer, along with some saline. It feels cold going into my arm and I taste the chemical taste in my mouth, but that’s really it.
Then my job is to lie still in the dark for an hour while my cells take up the radioactive sugar. Tumor cells tend to be more metabolically active so they take up more of the sugar which makes them light up on PET. Let me pause the medical talk here to give some human commentary to this. PET scans are the luxury spa experience of medical imaging. Maybe this is by virtue of the fact that a one hour nap is REQUIRED. And a space heater?!? That’s deluxe. Also, did you catch—no paper clothes? As long as you’re not wearing metal you can stay in your stretchy pants. The experience on the machine is also pretty luxurious. You lie flat on the conveyor belt but after a quick in and out CT at the beginning, it’s just one long, slow trip through the donut hole moving millimeter by millimeter. The scan takes about 20 minutes. So, in my opinion, radioactive isotopes aside, PET is where it’s at. You had me at space heater!
All good things must come to an end and luckily this ended in time for me to grab some eggs and bacon before my next appointment. Breakfast is always the best meal in a hospital cafeteria!
I head over to ultrasound and after a short wait I’m back with the tech in a dark room. I lie down and she puts some goo on my neck. She tells me she remembers me from my last visit to NIH. I find this interesting, that she would remember me. Now that she mentions it, I think I remember her too, thought I don’t remember anything more than her general appearance. She asks me lots of questions as she glides the wand up and down the right side, then the left side of my neck. She asks where I traveled from and then says she spent a week in San Diego and wanted to move there. “But my parents thought I was crazy. ‘You have a good, government job,’ they said. So I didn’t go.” She tells me that her daughter is thinking of becoming a PA when I tell her about my job. We had a pleasant conversation about why PA is such a good career.
She shows me the screen and points several places, “This is your trachea. This is your carotid. This is your jugular. This is your mandible. There is the paraganglioma.” Interesting that all the structures are mine, except this one, intrusive lump. Which in reality, my body made it and allows it to persist, so I’ll say it’s MY paraganglioma! I ask about the size, since that’s the big question this visit—has it grown enough to take it out? She measures it on the screen (2cm) and then explains that ultrasound measurements are operator-dependent, meaning it’s subjective. The MRI and CT will give more objective measurements.
Then she leaves to get the radiologist. He comes in with a pretty dry demeanor. Asks a few robotic questions about where I’m from and what I do. Makes some conversation about how hard it is to get patients to change behavior that leaves me a little bewildered. I ask him about the size. “It’s at least a centimeter.” That’s not very specific but I don’t press it because of what the tech explained. I ask about the likelihood of it causing Eustachian tube dysfunction (as I’ve had a lot more trouble with my sinuses in the last couple of years). Now I’m holding him up, but he doesn’t seem in a hurry. He seems annoyed that I’m asking him something that is outside of his realm of expertise, or at least comfort. He says something about ENT not being his specialty and I let him leave. Doctors can be so weird.
I wipe the goo off of my neck, don my winter apparel and walk out into the bright hallway. I’m greeted by the enthusiastic tech who walks me out to waiting area. We exchange well wishes. I now have an hour to kill before my next appointment. I find a padded chair in front of the travel office and sit down to read. More on that in a future post.
I walk over to MRI. They’ve redone the waiting area here since last year. More paper work, this time about potential metal in or on my body. I change into the paper clothes and put my things in a locker identical to those at the YMCA at home. I’m asked to stand in front of a panel that detects metal and spin a circle. Then into the imaging room. I lie down on the conveyor belt with my head on a pillow and my lower legs on a wedge. The tech flushes my IV catheter and connects it to some coiled tubing. This is how the IV contrast is introduced at the appropriate time. He puts a blanket over me, then two large plastic radio frequency coils that cover my chest, abdomen and pelvis. All of this is secured with two velcro straps around me and all the gear. He places foam earplugs in my ears. This seems like something one would normally do for herself but he’s got it down. Then the earmuff style headset and I’m ready to go. He exits the room and I slide back into the machine. I hear music and the tech asks through the headset if I can hear him. The music is loud and muffled so I ask him to shut it off.
Now I’m in the tube. It’s a big box with a cylindrical bore in the center that’s about four feet long. It’s open on both ends and the machine blows air through the tube. I’ve been in one machine that didn’t have the air feature and I remember feeling claustrophobic from my breath coming back on my face. Thankfully, I’ve never had that problem any other time.
Now for the noise! MRI machines have this constant chirpy whooshing noise going when they’re not in use. Then the real fun starts and there’s a reason for all of the hearing protection. As I was lying in the machine today I was considering how I could describe for you the noises this thing makes. They are varied and loud and surprising! Some remind me of laser-type sound effects from an 80s pop song. Others sound (and feel) like someone is alternating between punching and kicking the machine. There’s some jackhammer tones in there. Little clicks. Spaceship fire alarm. If you are curious, here is a youtube video that can give you the idea pretty quickly. I would love to hear your descriptions!
I am in the machine for about an hour. I notice that my pelvis and abdomen feel warm during one part of the exam. Never felt that before! The tech said that “can be normal.” Reassuring.
The other part of this I should explain is the breathing part. All throughout the exam the machine talks to you, “Breathe in. Breathe out. Breathe in. Hold your breath.” I was doing abdominal and pelvic studies today so I assume this is to intentionally position the diaphragm. It’s the most challenging part of the study for me. The breath holds are not long. I just feel like a lot is riding on it. My ability to hold my breath affects the quality of the study. If you breathe then you are moving and that causes a blurry picture. I think the pressure gets to me and then I end up moving or breathing (face palm). I also notice that when I’m holding my breath it feels like my heart beat is moving my whole body, like a mallet hitting a gong. So today I tried something new. During the breath holds, I imagined I was in the ocean getting worked by a wave. I repeated the mantra I use in that circumstance, “I’m ok. I’m ok,” and I pictured being under the water waiting for the wave to pass. And it worked like a charm. Funny that THAT could be more comforting than lying in a plastic tube.
I walk out of the hospital free and clear at 1:30pm. I felt good and warm and alive! Amazing what a coat, sweatshirt, space heater, some radioactive sugar and protein breakfast do for a gal! I walk down the long sloping hill to the Metro station and catch a train to Farragut North. I walk through the monuments with the afternoon sun 
sporadically breaking through the clouds. The trees and grass are still mostly green. I don’t pause at the monuments for long because I have in mind to rent a bike and ride to Roosevelt Island. The ride takes me along the Potomac, across the Theodore Roosevelt Bridge into Virginia. I park the bike and walk across the footbridge. Roosevelt Island is a forested swath in the middle of the river. Having spent most of my life in the desert, I’m always surprised by the explosion of life in the forests back East. Everything is covered in leaves and vines and moss and fungi. I TOTALLY appreciate a good forest fungi.
I walk to the Roosevelt monument. It’s beautiful and larger than life. There is a Mennonite family playing here. The mom is kicking a soccer ball around with her one and three year old daughters. The father is playing a hide and seek game with the older four children. I walk around the monument and admire their fun. Because I’m trying to be open to connection, I approach the mom and tell her how much I enjoy seeing her play with her children. She tells me they homeschool, “so we can be here in the middle of the afternoon on a day like today.”
I think, “I would come here too if I lived here.” The forest is peaceful. I follow the trail that circumnavigates the island. Being in nature always puts something back into me, 
something that gets used up with life. I think Roosevelt felt that too. I’m starting to get hungry so I walk back across the footbridge and get back on the bike. I ride over the Francis Scott Key Bridge into Georgetown and immediately spot a place called Pie Sisters. I ditch the bike and settle in with a piece of chicken pot pie. I think pie, like cupcakes, might also help soak up radiation. I get a mini dessert pie for later and meander around Georgetown on foot. I like Georgetown. It’s all bricks and historic homes and shops. People have decorated for halloween with gourds and pumpkins. I walk past a bay window of a row home where I see an elderly man sitting in a wheel chair. He waves at me and I smile. I feel thankful that I saw him. I know that feeling: “I’m in here!” It makes me think that a lot of us are walking around thinking the same thing. We’re all in here waving, hoping someone will see.
This post is already plenty long but I want to say something about my big takeaway from today. Because I knew I was going to be describing this for you, I really practiced mindfulness today. I was more curious than usual. I was more open. I noticed more. I felt more. I listened to the command, “Stay Open.” And it made ALL the difference. Day 2 was pretty great.
I really appreciate you sharing these descriptions and your feelings Michelle. This is very interesting to me. Keep writing!