Take Me Back to the Ballgame

July 20, 2012 at 9:53 am (Uncategorized)

I almost ended up in an emergency room last night.  Don’t worry.  I’m not going to report on yet another health crisis.  Everything’s fine.  In fact, everything was fine last night—well, fine for me.  Still, I got awfully close to being whisked away in an ambulance for a ride to the ER. 

Here’s what happened.  A few days ago, Jay, Andrew, and I headed off to Boston to visit his family.  As you know, I have not been feeling my best lately.  I continue to have problems from neurosarcoidosis that range from irritating (fuzzy vision, mild vertigo, and tiredness) to debilitating (blind spells, severe vertigo, and crushing headaches).  On a good day, I’m a little dizzy, and a little unsteady on my feet. 

On my spectrum, last night was a middling one.  My head was hurting, but not extraordinarily so.  My balance was off, but not terribly.  Whatever my physical limitations, I was happy.  I was at Fenway Park, with Jay, Andrew, and Jay’s stepfather—who had gotten us amazing seats to watch the Red Sox play the Chicago White Sox.  Jay was glowing.  He’s a lifelong Red Sox fan, and now he was able to share his love with his son.  I was thankful to be there.

It was very hot and humid.  On one of bathroom breaks, I stopped in front of a giant misting fan set up in the stadium to help folks cool off.  The cold spray of water pumped out from the industrial blowers felt so wonderful that I sat down in one of the folding chairs set up near the fan.  I drank a few sips of water and rested.  The crowd roared, and then groaned (this was a Red Sox game, mind you).  A section of the stadium took up the chant, “Let’s go, Red Sox.”  I should be getting back.  I told myself that I would stay in the luscious cool for three more rotations of the fan, and then five more. 

When I finally blasted myself up, I was wobbly on my feet.  This is quite normal for me, as are the sudden changes to my vision.  What I’ve learned to do in the five years that I’ve been contending with neurosarcoidosis is to stand still and wait until I get my bearings.  This has worked well for me for many years, but not last night.  You see, the misting fan station was set up by paramedics, who were lounging against their ambulance near the chairs.  I’m sure they were just doing their job and were on the lookout for someone displaying signs of heat exhaustion or heart problems that they could help. 

It certainly didn’t take very long for two burly men in stiff white shirts to appear on either side of me bellowing “Ma’am, are you alright?  Ma’am?” 

 “Yes, yes, I’m fine.”  I tried to stand a little more steadily.  I’ll admit that I probably wasn’t all that successful and that I swayed and wobbled.  I felt crowded by the towering men, who exuded a strong, tangy aftershave that made my head hurt a little worse.  I tried to cut left, back towards our seats.  But the men were like a wall. 

“Let’s just make sure you’re OK,” one of them said.  They steered me right, into a first-aid station that was just around the corner from the ambulance. 

My biggest mistake was to sit down inside the first-aid station.  I was still feeling wobbly and half-blind, but I should have remained standing.  Once I sunk into a seat, I must have signaled acceptance, passivity, weakness, or illness.  These are not the facets of the self you should ever allow to shine through in an emergency medical setting (unless, of course, you actually need and want treatment.)

Seconds after my ass intersected with the chair, two White Coats emerged from a curtained-off antechamber.

“I’m Dr. X and this is Dr. Y.  How can we help?”

And here’s where I made my second tactical blunder.  I didn’t say, “Oh, thank you so much for your concern, but there seems to be some kind of misunderstanding.  I am 100 percent fine and 100 percent healthy.  And now, I’ll just take my thoroughly sound and healthy body back to the ballgame.”

But it was so hot.  My head hurt, and my vertigo was doing the swoops.  I hadn’t expected to encounter White Coats on my bathroom trip, so I didn’t have my game face on yet.  So instead, here’s what I said:

“Oh, thank you so much for your concern.  I’m fine.  I think I’m just a little off because of the heat.”

This gave them a point of entry.  They were just doing their jobs—and making sure I couldn’t ever sue the ballpark if I had a stroke or a heart attack—and I was being a good patient and started answering all their questions.  I should have pled the 5th, but there is no such provision in the medical realm.

So they asked one question after another, and in my slightly-addled (and now very anxious) attempts to reassure them that I was fine, I ended up confessing that I have vertigo, episodes of blindness, confirmed neurosarcoidosis and cardiac sarcoidosis, heart palpitations, an implanted defibrillator pacing me as we talked, and dizziness.  Each bit of damning evidence I coughed up was really my attempt to first explain why my initial dizziness wasn’t a concern and then to explain to them that I know how to manage this disease.  They talked me into doing an EKG, there in the first-aid station with a woman loudly vomiting in the cubicle adjoining mine.  I intended to prove to them that I was fine.  The test did come back normal, but it also showed evidence that my defibrillator was pacing my heart.

“You need to get to an emergency room right now and be evaluated by a cardiologist,” Dr. Y said.

“Let me go talk to my husband,” I said, planning on ducking back to my seat and hiding for the remainder of the game.

They must have heard this before.  “We’ll send security with you, and then get you into an ambulance,” Dr. X said.

“No, no, NO!” I said.  “You are not sending me back there with security.  You will freak out my eight year old son who has been freaked out too much by this disease.”

They backed off a millimeter or two.

If all of this happened two or three years ago, I would have consented to being driven to the ER in an ambulance.  I would have listened to the White Coats’ worst-case scenarios and let them cajole me into “getting checked out just in case.”  And then I would have spent all night getting thousands of dollars of tests done that would show evidence of cardiac sarcoidosis and my defibrillator doing its job—two facts I’ve known for years.  Perhaps a neurologist would be called in, and could then proclaim that my vision is screwed up and I have changes in my visual field—again, data I already possess.  In the process, I would traumatize my son, exhaust my husband, worry his parents, ring up a huge bill for my insurance company, and probably catch a virus in the germ-laden city hospital.  I would have agreed to all of this because I didn’t yet trust myself to be able to read my own body’s cues.

But this didn’t happen two or three years ago. It happened last night.  I’ve been in Chronic Town for over eight years.  I am beginning to know the rules.  I have learned that I can say, “NO!!!”  I have learned that in some cases I know my body better than any specialist ever can.

I got up and walked out of the clinic.  On my way, I told the medicals that I appreciated their concern, but that I have learned to manage my disease.  I went back to my seat and hugged Jay hard.  A few minutes later, one of the paramedics followed me, and told me loudly, in front of dozens of strangers, that I was going against medical advice.  I smiled nicely and said, “Yes, I know.  Now please let me watch the ballgame.”  He left.  The crowd roared again as the Red Sox batter cracked the ball high into night sky.  I couldn’t see it for a few seconds, but then I picked it up, soaring into the bright stadium lights, sailing into the unknown.  Let’s go Red Sox.

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July 5, 2012 at 2:57 pm (Uncategorized)

I’m back from a visit with the sarcoidosis expert in Ohio. I haven’t posted for a few days because I needed to process the trip. Plus, it kicked my ass because I had to get my chemo treatment the day before we left.

You see, my health insurance company is strict about exactly when I can get my monthly infusion medications. I’m not sure why they act like Earth will careen out of its orbit if I get Rituxan and Remicade two days early or one day late. But that’s the way it is. I won’t complain to them or about them too much, though, because they agreed to pay for these medications, which cost $30,000 and $50,000 each dose—and aren’t yet approved by the FDA to treat sarcoidosis. They could have denied the claim outright.

Travel day started with my emptying my stomach contents—and seemingly my stomach itself. But I was able to choke down some saltines along with anti-nausea medication. After that, Jay took care of everything. He had wheelchairs lined up to ferry me across giant airports. He got seltzer water for me and seats with more leg room. He held my hand, patted my back, and said nice things. All I had to do was stumble onto the planes and then fall asleep.

My appointment with the sarcoidosis guru was the next day. It’s always reassuring to see him. In advance, I write down a list of questions. He answers every one, without rushing me, before proceeding with the physical exam. I had a lot of questions this time. Even though I’m taking some heavy duty medications—the monthly chemo and Remicade infusions, a daily chemo pill, loads of prednisone—I’m having increased neurological problems. Along with the vertigo, severe pain, and blips of blindness, I now have constant grainy vision that sometimes gets bad enough that I can’t really see much at all. The guru said these problems are from the disease attacking two cranial nerves—my old friend, the vestibulocochlear nerve that maintains balance, and now, the optic nerve, which connects the eye to the brain. The crushing headaches are from neuropathy.

The conclusion of this explanation would have been a good time for the guru to reach into his desk drawer and pull out a glowing, golden pill, which he would give to me, saying “this will take care of everything.” Actually, I would settle for a magic pill that fixes just a few of my problems. Hell, alleviating one symptom would be refreshing. But magic pills are not the stuff of real life. I know this. But there’s still a piece of me that, against all reason and reality, persists in hoping for a cure for this incurable disease I’ve had for nearly nine years—and then gets disappointed.

The guru did mention a new drug in the pipeline. It’s called apremilast, and it’s shown some promise in treating chronic forms of cutaneous sarcoidosis. But he cautioned me against pinning my hopes on this. For one thing, apremilast isn’t yet available in the U.S., and clinical trials don’t always have happy endings. He told me about a recent clinical trial that used stem cells to treat auto-immune diseases. The stem cells ended up causing more problems than they fixed.

But the guru did have a plan for me. He agreed with my local orthopedist, who recently discovered a 1.5 centimeter lesion on one of my ankle bones. This is probably caused by sarcoidosis, but without digging out some of the bone for a biopsy there’s no way to be sure—and there’s no reason to strive for clinical certainty because either way, there’s no treatment for it. I’ll get fitted for a custom ankle brace to shore up the fragile bone, and hope the hole doesn’t expand.

As for my cranial nerve problems, he’d like me to see a retinal specialist or a neuro-opthamologist for testing that will quantify the extent of the damage to my optic nerve. If it’s severely compromised, the guru might recommend I add Cytoxan—a particularly nasty chemotherapy infusion I had to get twice a month for over a year—back into my drug cocktail. Merely thinking about Cytoxan makes me anxious and overwhelmed, so I am trying not to think about it. I just need to focus on finding a retinal specialist and taking care of the testing.

I like having a plan, even when it’s something as basic as visiting another specialist. The prospect of quantifying the damage to my eye sight is frightening. It’s easier to think of my latest neurosarcoidosis problem as “some fuzziness,” rather than measuring the degree of loss or the progression to blindness. Ultimately, though, it will be relief to know what’s happening to me and to decide what to do about it. At least that’s what I keep telling myself.

There might not be a magic pill to fix everything that’s wrong with me, but that doesn’t mean there’s not magic in my life to help me deal with what faces me. I have an amazing friend in my husband, who always travels with me. I have an amazing son, who was excited to welcome me home. I have a doctor with experience and wisdom. I have health insurance that pays for treatment. I have friends, near and far, who showered me with good wishes and prayers for strength on my journey. And I have the outline of a plan to follow. I am not alone in this maze of illness.

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