Day 6: Can you tell I feel lighter? 

I got through my last day of tests today! First thing, I had a third IV placed, this time in my right antecubital space (inside of the elbow).  This is radiology’s favorite place to put IVs and my least favorite because every time you bend your elbow it hurts, which is really annoying!  I had two MRIs this morning (neck and chest)…more of the breathe in, breathe out, breathe in, hold your breath business.  And then the cardiac CT. 

The cardiac CT probably warrants some explaining.  First off, by having it done at NIH, I’m participating in a study of cardiac CTs.  They are collecting images from 3000 participants and analyzing them.  So I had to sign an additional consent to participate in their study.  I have a 1-2cm paraganglioma in the right atrioventricular groove of my heart.  For a long time there was debate about whether it was inside or outside of my heart.  I think the consensus now is that it is on the OUTSIDE, which seems a hell of a lot better to me, though I’m not sure that it is. 

This tumor was discovered in 2005 when I first visited NIH.  It lit up on PET and they did the cardiac MRI to get a better look.  It has remained unchanged since 2005.  I used to get a cardiac MRI at each visit because that was considered the best way to image the tumor.  It was a lengthy MRI with lots of the formatted breathing.  Last year, my doctor recommended the cardiac CT.  I understand that it is considered more accurate than the CT for measuring the size of the lesion.  The CT is nice because it is quicker.  I understand that the amount of radiation exposure is quite low as well.  The downside is they have to give me medication (metoprololol) to slow my heart rate.  They need it below 60 beats per minute.  They also give nitroglycerin to dilate the blood vessels of the heart.  My resting heart rate is around 60 beats per minute and my blood vessels are quite healthy so these meds give me side effects.  Then there’s also the CT contrast, which makes me feel generally crappy. 

Last year I had a rough day because of this.  I had a PET scheduled in the morning, then the cardiac CT at 1pm—the CT with all of the drugs I mentioned above. The CT must have been running behind because I remember I finished just in time to walk across the hall for two MRIs scheduled that afternoon.  Thankfully the nurse ordered me a sack lunch while I was getting the CT so I had a sandwich on my walk over. 

I’m sure I didn’t feel great getting into the MRI machine but I got through it (injected with more contrast…that’s three different imaging substances circulated through my body in about 6 hours if you’re counting).  When I got off the table I had the same faint feeling I got when I watched my first orthopedic surgery (a 14-year-old boy getting his leg amputated below the knee).  Luckily I’ve felt that feeling before and I know it is better to sit down than to fall down, so instead of walking out of MRI, I sat down on the floor.  A nurse was called to evaluate me.  They helped me onto a gurney and checked my vitals.  I was sure I couldn’t walk the short walk back to the Family Lodge so arrangements were made for me to rest in the day hospital until I recovered.  The nurse loaded me up in the wheel chair and brought me to the unit.  They tucked me into bed and ordered some dinner for me.  I watched TV and ate and rested until I was strong enough to walk back to the Family Lodge.  When I got to my room I crawled into bed and slept until late in the evening.  There was really no bad outcome here except that I was reminded what it feels like to be mostly helpless and alone. 

When Marianne was making my schedule for this visit, I asked her to not schedule anything after the cardiac CT.  And thankfully today was much better.  I ate some eggs early in the morning so I was only without food for four hours prior to the test.  I told the cardiologist performing the study about my reaction last year.  She said they would still need to administer the medications but that they would use the lowest possible dose.  I mention all of this because over and over again as I have worked in medicine and been a patient, I observe that ultimately YOU are the best person to advocate for YOUR healthcare.  No one else is watching out of for you the way you can watch out for yourself.  So if something seems wrong, ask about it.  There’s plenty of ego in medicine and the paternalistic culture has not completely died away, so you may meet some resistance, but blindly trusting that the people caring for you don’t make mistakes or always know best is taking a big risk.

Now, let me describe what it feels like to be hit with metoprolol, nitroglycerin and CT contrast all at once.  I’m lying down on the conveyor belt that goes through the CT scanner.  I have a blood pressure cuff on my left arm.  The cardiologist, a super-pleasant Asian woman, has exfoliated my chest and placed EKG leads (stickers that transmit the movement of electricity through the heart onto a chart on a screen).  She says to me, “Now is the time to think all of those relaxing thoughts.”  The nurse pushes saline and the metoprolol and then more saline into my IV.  On the monitor, I watch my heart rate fall from the mid 60s to the upper 50s. 

The cardiologist connects my IV to tubbing coming from a device that looks kind of like a surveillance camera, but instead of a lens it has tubes containing the contrast solution and saline.  She wraps the coiled tubing around my finger, “Now let’s try a larger bolus and make sure your IV handles it.”  The contrast dispenser pushes a bolus of saline through my IV.  There’s a bubbling sensation in my arm and the very familiar taste fills my mouth.  Then she puts a little medicine cup in front of my mouth and asks me to open up and let the tablet go under my tongue.  This is the nitroglycerin.  It doesn’t taste like much and takes a couple of minutes to completely dissolve, but almost instantly a headache begins in my left forehead. 

Now the machine is bringing me forward into the bore of the CT scanner.  There are several quick in and outs with the same breathing instructions as the MRI.  This lasts only a couple of minutes and now the pain has spread across my head.  Then I feel the contrast going into my arm and sudden heat in the back of my throat.  The heat spreads quickly to my face, neck, and labia.  It’s much more intense than the heat of the contrast last week.  The heat in combination with the headache and my slow, body-quaking pulse is overwhelming.  I lie still through several more breaths and trips into the CT bore.  The heat from the contrast dissipates quickly.  The whole procedure is over in less than five minutes.  The nurse checks my blood pressure and removes my IV.  My blood pressure is 90/42 and my pulse rate is 55.  This is quite low.  I sit up slowly but aside from the headache I’m mostly ok. 

The cardiologist recommends I drink a lot of fluid and find something salty to eat.  The nurse hands me a brown paper sack with some snacks and a water bottle.  I walk to the cafeteria for chips and Gatorade.  I’m wondering when/if the faint feeling is going to start.  I decide I feel okay so I walk up to the front of the hospital to wait for the hotel shuttle and eat my provisions.  I make it back to the hotel without incident and crawl into bed. 

I ACTUALLY napped—for about an hour!  Cue the applause!  I woke up feeling pretty good but still weak.  I laid in bed and watched TV for a while until the fire alarm went off.  REALLY!?!  I’m relieved it didn’t happen during my nap.  I consider running out quickly but I decide that if this business is happening, whether it’s an actual fire or a terrorist attack or some malfunction of the system, I don’t want to hang around for it.  So I pack my back pack with my laptop and a book, grab my jacket and head out for the afternoon.

There’s an Anthropologie Mecca store just down the street from my hotel.  It’s three levels.  It has a café, a Terrain plant store, a home decor section, and a wedding dress shop plus all of the usual Anthro goodness.  Seriously.  I’ve never seen anything like it.  Truth be told, this is my second time in this store in the past week, but the first time I didn’t buy anything.  Look at that self-control!  I found a couple of things for myself today and a couple of things for other people.  I had a goal of doing my Christmas shopping while I’m out here and I’ve done alright—found some good things. 

I also got my fingernails done, which I NEVER do.  When I started surfing in earnest, I realized that toenail polish was immediately destroyed in one session so I started getting my toes done with gel polish.  That’s my regular splurge.  But my fingers have always had a tough time sustaining polish so this was definitely an extra perk for me.  I should also note that this week has been the longest stretch of time in over two years that I have gone without wearing my Birks (another reason to say no-thank-you to winter). 

Can you tell I feel lighter?  I do.   I saw this Maya Angelou quote in the Goodnight Stories for Rebel Girls book yesterday: 

“My mission in life is not merely to survive, but to thrive; and to do so with some passion, some compassion, some humor and some style.”

Me too, Maya!  I’m so ready to go home tomorrow.  I’ll meet with the doctors in the morning to learn their recommendations.  Wish me luck!  And thanks for being on this journey with me!