Day 1: Make a mess beautiful

PREFACE:  This week I’ve decided to chronicle my NIH visit in detail.  My friends and family have been observing my NIH pilgrimages from a distance for years and are interested to know what it’s like.  I realize this may not be of interest to everyone and my entries will resume their regular flavor (whatever that is!) next week!

This morning my alarm went off 6:15, which felt like 3:15.  I wasn’t able to fall asleep until about 1:30am because of the time difference so it was a short night.  I just plan on this—don’t stress about it.  There is time to sleep.  I took a long, hot shower because the name of the game is conserve your body heat.  I need to get nice and warm before I venture out this morning. 

This time, I am staying in a hotel that is about a ten minute drive or a 25 minute walk from NIH.  The Family Lodge is closed for renovation.  I go downstairs at 7am to catch the shuttle to campus.  I am in the lobby with about 12 other people also going to NIH, all patients and family.  Two 15-passenger vans pull up, already partially full.  We all pile in and I’m next to a man who seems to be about my age, here with his mother.  He tells me that the shuttle yesterday was one hour and 45 minutes late for pick up and then stopped so briefly that they almost missed it.  I usually try to avoid the shuttle because I like the autonomy of coming and going when I want, but, like I said, I need to conserve body heat so here I am and thankfully it’s on time.

The man is animated and kind.  He shares that his mother has a rare blood disorder, “…like she was the fourth person in the world found to have this.”  They flew here from Pasadena yesterday and leave tonight.  He has mixed feelings about his mother putting in the effort, making the trip out here.  I gather that she is not receiving any treatment, only contributing to the research. 

Then a woman pipes up from the middle section of the van, “Who’s been coming here the longest?!  I’ve been coming for nine years and I’m profoundly grateful.”

I speak up, “Thirteen years for me and same.  Very grateful.”  Initially we might assume the gratitude comes from some life-saving intervention, but I don’t think that’s necessarily the case.  The greatest relief that NIH has offered to me is the knowledge that I am not alone and someone is looking into what the hell to do about me.  Being diagnosed with something rare is a rocky road.  There is a saying in medical school—when you hear hoofbeats, think horses not zebras.  Most of the time this is the best policy—except when you are a zebra. 

Many people with rare illness were wrongly diagnosed and/or wrongly treated before they wind up in a place like NIH.  Thankfully for me, my uncle is an oncologist and when additional tumors were found after my first surgery, he connected me with NIH early on.  Here, when patients feel grateful, I think it is mostly for the little bit of certainly NIH provides.  Someone has heard of this.  Someone is studying this.  Someone is trying to figure out what to do next, even if 90% of your questions are answered with, “We don’t know.”  At least if they don’t know, then probably nobody knows.

We get to the security building on the edge of campus.  Everyone gets out.  Bags are put through a screening X-ray and people through metal detectors.  One elderly woman sets off the metal detector but they let her go anyway.  Radiation from the studies and treatments can set off a metal detector.  We are each issued a temporary ID for the day, then back on the shuttle and up the hill to the Clinical Center. 

I walk through a massive revolving door and wish the man and his mom good luck with the day.  I pass through the enormous, well-lit atrium.  People are seated at little metal tables drinking coffee.  The Hatfield Clinical Center was completed just before my first trip to NIH in 2005.  It is a beautiful structure with plenty of welcome daylight.  At the back of the clinical center I pass into the older part of the hospital. 

First stop is phlebotomy, where I give urine and blood samples.  I’ve been chugging water all morning in an effort to prop up my small and roll-ey veins for the IV that will be placed.  Next stop is CT.  I arrive about 40 minutes early and sit in the outer waiting area.  I’m already getting cold.  I think they refrigerate hospitals because someone thinks that the patients, like left over ham, will keep longer if they are at a temperature just above freezing. 

I’m prepared for the wait.  I pull out my book, something my therapist recommended about the soul journey of life-threatening illness.  I’ve been waiting to start it until I got here because it seemed to heavy for my day-to-day life.  I wait for over an hour.  I check with the receptionist.  She says they are waiting for my lab work to be processed.  I sit and read for another 30 minutes.  Finally they call me back.  I’m then admitted into the BACK waiting room.  I am given a set of paper scrubs to change into (incidentally paper clothes are not the warmest).  I pull my coat on over the top of it. 

The tech gives me an 800mL bottle of iohexane solution and and a paper cup and asks me to get 600mL down in the next 15-20 minutes. This volume is equivalent to a 20oz bottle of Coke.  Iohexane is a clear, watery solution, like water with a slight chemical taste.  The first two cups go down pretty well but by the time I’m 2/3 way through the third cup, I’m feeling pretty nauseated.  I let the tech know and he says, “Well then you’re done!”  So just drink it until your sick—that’s how you know you got enough!

I am waiting in the waiting room some more.  I’m reading and sending text messages with family and friends.  I’m called back for IV placement.  I ask for the IV to be placed in the back of my forearm because it’s more painful in the bend of my elbow when I’m using my arm for the next five days.  There’s a big to-do when I let them know I want to keep it for tests the next day.  This is against policy, apparently, but I have terrible veins and will be needing IV access all week.  They say they will leave it in since I’m going to the day hospital next.  I’m back in the waiting room again.  Another hour ticks by.  I’m getting increasingly cold and restless and nauseated. 

Finally at 10:30am, I am called back for my 8:40am CT appointment.  The radiology tech is totally no-nonsense.  I’m instructed to lie down, arms over my head.  She flushes the IV and it stings.  “It’s not infiltrative,” she says.  I decide I can deal with the stinging so we press on.  I slide in and out of the donut hole of the CT scanner and hold my breath as directed.  The tech warns me that the IV contrast is coming.  First I taste the metallic, chemical in my mouth, then warmth around my lips, spreading into my face.  Next I feel it in my pelvic floor.  The warmth spreads from these two centers into my neck and shoulders, abdomen and legs.  CT scans are quick so I’m off the table and out of those breezy paper clothes ASAP. 

I head back into the well-lit clinical center to the day hospital, 30 minutes late for my appointment.  I get chatted up by the nurse.  She checks my vitals, flushes my IV to check that it’s functioning and tells me about her other side gig doing a combination of yoga and psychotherapy.  She is pleasant and kind.  I lie down on the bed for my resting labs.  These labs have to be drawn through an IV after lying still, in a dark room, for 30 minutes.  She wraps me in a warm blanket which feels amazing for about 10 minutes but then the unrelenting cold starts to creep back in.  I lie still, eyes closed for the prescribed time.  She milks my IV along to get the few tubes of needed blood and by noon, I’m on my way again. 

This is my first opportunity to eat so I head to the cafeteria.  The food here is always disappointing.  I grab some soup and sweet potato fries.  My gut still feels strange and I am now achey in my legs and pelvic floor.  I’m not sure why, but the CT contrast always does this to me.  I eat my warm soup and cold fries and call my mom and dad to let them know how it’s going.  I joke that I should have brought snow pants because my top is ok with the coat I’m wearing but my legs are freezing. 

I have one more thing to do before I can leave.  I have to get my ID that will allow me on campus for the week without having to stop at security every time.  This requires another hour of waiting so I get something hot to sip to try to warm up and I settle in with my book again.  When I finally emerge from the Clinical Center, the sun is shinning and a nippy breeze is blowing.  I had planned to walk or take the Metro to the hotel, but I opt to wait a few minutes for the shuttle because of the cold and the ache. 

This is one of the disappointments of these trips.  At this point, it’s 2:00pm.  Theoretically, I could head out and sight-see, but the combination of the early morning, fasting and oral and IV contrast leaves me feeling achey and nauseated.  I opt to rest in bed in the hotel with the heat cranked up and write this for you.  With the passage of a couple of hours, warmth and lots of water, I start to revive.  At this point it’s late enough that I can’t go far so I walk down to some shops in Bethesda, grab some dinner and, of course, a Georgetown Cupcake.  I discovered last time I was here that Georgetown Cupcakes are super effective at soaking up the all of the radiation.  Someday they’ll do an NIH study about that!

Today was ultra typical of the days I spend here.  Early morning.  Fasting.  Waiting.  Studies that make me feel crappy.  Since I’m trying to make this a different experience, I looked for opportunities to connect.  And I found them.  These weren’t groundbreaking connections but I feel different because I’m staying open.  Glennon writes,

“…when my pride is all scuffed up and my heart is darkening and I’m wanting to SHUT DOWN and retreat and lick my wounds forever.  I hear: STAY OPEN. STAY OPEN. STAY OPEN.

You guys, that’s the only way to make a mess beautiful.  Stay Open.  To everyone and everything.  All the time.  I’m absolutely convinced of this horrible truth.  The good news is that I know this.  The bad news is that Staying Open is the hardest thing on Earth.  Thank God We Can Do Hard Things.”   On Liam and Balloons and Staying Open

So I will continually repeat the mantra, “Stay Open” and trust that I will make a mess beautiful.