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My Story – Part 1

My husband is an economist.  He has taught countless classes at both the undergraduate and graduate level on statistics and probability.  Conversations in our house are often presented in this framework, despite the fact that the other three of us living here have never taken an economics class. (The kids are only 5 and 9, and I was a theatre major).  Regardless, we try to plan our days around things that will maximize everyone’s utility.  We explain things to our children in numeric terms.  For example, if there are 10 people on a family vacation for seven days, then each person should really only get their way on one of those days, and three people may be out of luck unless they share the opinion of one of the other seven. Math. It’s logical.  It’s clear.  It can provide reassuring answers. Supposedly.

That said, as the person with the significantly lesser (non-existent?) math background; as the emotional, left-brained member of the family who lives in a world of infinite shades of gray, rather than concrete, “math-y” black and white, I maintain the opinion that statistics are completely meaningless when you are the one person in a million.  Someone has to be the one.  And when you are the one, that one-in-a-million, or even the one of three in 100, you had best wrap your head around it, accept it, and move forward.  Throw math out the window, because the odds are no longer a source of comfort or hope, and therefore, they lose all meaning.  During 2008-2010, the “one” seemed to be me more often than probability theory might suggest.  But then, what do I know?  I was a theatre major.

December 2008: I am sitting on the couch in my mother’s TV room watching a movie.  I am dead tired.  We had made the three and a half hour trip with both kids for a “post-Christmas-Christmas” at Grandma’s house earlier in the day. Plus I had a cold.  The kids were finally sleeping – it always takes longer to get them to sleep when they aren’t in their own beds. This fact and my fatigue from the long ride are not always the recipe for a patient, “good mommy” bedtime routine.  But they were finally sleeping, and I was happy to be flopped on the couch in front of the TV before heading to bed myself.

I don’t remember what we were talking about when my mom changed the subject and said, “I know you have a cold, but I see a lump in your neck. I want you to check that out when you go home. You are about the same age I was when I started having thyroid issues.”

“OK,” I said, and focused my attention back on the TV.

I went to see my primary care physician. He went through the regular routine of checking my glands, listening to my lungs, etc.  I told him my mom had noticed a lump in my neck over the holidays.

“Oh, let me look again,” he said as he put his hands on my neck. “Yes, I feel a little something.  We can get you an ultrasound if you want.”

It didn’t sound terribly pressing. It sounded like one more thing to add to an already-too-long to-do-list.  Sigh.  This was clearly going to be an unnecessary hassle.  But as the good girl who generally does what she is told, I went and got the ultrasound, and was referred to a general surgeon in town who would follow the results.

My husband John and I went to see the surgeon together.  John was more worried than I was about the appointment – doctors and hospitals do that to him, although he is definitely the guy you want with you in the hospital or at the doctor’s office.  He always knows the questions to ask, and he will micromanage an entire nursing staff to make sure you are comfortable and well taken care of.  I know this from experience.

The results came back saying, yes, there was a nodule on my thyroid, but it was so, so, SO small, it would be impossible to biopsy. Phew. With that, I forgot all about it for six months until I was supposed to check it again.

Six months later, I went back for a follow-up ultrasound.  I didn’t bother bringing John with me this time, because I was sure it would be a routine visit.  However, my doctor looked concerned when he came to give me my results.  “It doesn’t seem possible that it could have grown so exponentially since last time.  We are checking with radiology to see if there was an error.”  Fabulous.  My heart started racing a little. “But this is silly,” I thought to myself. “I am in great health and only 36.”

The error happened six months earlier. Some rocket scientist had measured one cyst in a multi-cystic nodule rather than the whole mass.  Oops.  Perhaps we needed a radiologist instead of a rocket scientist.  Maybe we should get this biopsied now. (What are the odds of something like this happening?)

Biopsies are no fun at all, and my experience was the pits.  I am not a fan of needles, and the idea of sticking a large one into my neck and digging around for an hour had me pretty edgy.  But I am a trooper.  I may hate the needles, but I really do try to be a damned-good patient.  I prepared for my visit by putting together a soothing playlist of meditative music on my ipod: a nice scramble of Enya, chanting, and new wave.  I figured I would position the headphone wire out of the way so I could meditate while they worked. I planned to imagine myself on the beach, watching dragonflies dance on the waves from my favorite rock on the shore, while the doctor repeatedly jabbed me with a large needle to extract the juices of my nodule.  Yes, that was my plan.

The nurses were very amenable to this idea. Then the doctor came into the room.  An attractive woman, probably in her late 30s, early 40s, she was quick to note it was not her error that the ultrasound had been read incorrectly all those months ago.  Hmmmm…her defensiveness did not feel soothing and reassuring.  Then she asked one of the nurses to turn some music on.  The nurse explained I would be listening to my own music on headphones during the procedure.  “You mean we have an hour with no music?!” the doctor complained. Definitely NOT soothing and reassuring. I couldn’t help but sarcastically think I was so sorry an hour of her workday was going to be inconvenienced with a lack of Britney Spears. I often use sarcasm as a defense mechanism, even if only in my head.  This was not a typical day for me – this was one hour in her typical workday – but for me, it was a stressful, out-of-the-ordinary, unpleasant experience.

Strike one: misread ultrasound.

Strike two: egocentric radiologist.  I really never should have waited for strike three.  But then, at this point, this was still nothing serious, nothing to worry about.  And then the biopsy came back clean.

“Is it bothering you, the lump?” asked the doctor.

“No, I don’t feel it at all.”

“Any trouble swallowing?”

“Nope.”

“Well, we can take it out, or we can just watch it.  The good thing about thyroid nodules is even if they ARE cancer, it is very slow-growing.  If you had to pick a cancer to get, thyroid cancer would be the one.  But it is very unlikely it is thyroid cancer, less than 5% chance of that.  There is really no rush to get this out, unless you are uncomfortable.  We will just check you out again in six months and see if it is growing.”

“OK.”

My next ultrasound was scheduled for December of 2009.

Six months went by, and I was disappointed to find the lump had continued to grow. I should not have been surprised by this news – it had grown enough that I felt it when I swallowed. But I had been trying some holistic, alternative therapies in the interim, and I was hoping they would have better physical results, so I was surprised and disappointed nonetheless.

Once again, I was told the chances of the lump being cancerous were slim. The odds were in my favor. So we scheduled a thyroid lobectomy rather than a total thyroidectomy. No sense removing the healthy half of the gland for no reason. My surgery was scheduled for February 15, 2010, and I would stay in the hospital for two days. My thyroid tissue would be sent to a lab to be biopsied following the surgery, and we would have the results in a few days.  It felt like a formality.

February 17, 2010.  I open my eyes and try to focus. I begin to see a blurry version of my husband in the doorway of our bedroom.  His face is stricken, although I don’t remember that until later.

“We have to go back tomorrow,” he says.  “It’s cancer.”

“OK,” I say.  And I roll over and go back to sleep.

Statistics are meaningless.  Meaningless.

February 22, 2010.  I am back in the hospital to remove the other half of my thyroid.  I am not happy to be in the hospital…AGAIN.  I am sad.  Disappointed.  I feel like a soldier going back into battle after already having seen too much of the war.  Buck up, pull up your bootstraps and march.  What else can you do?

When the anesthesiologist asks me why I am looking so down, it is too much for me to take.  I can remain stoic in silence, but don’t talk to me about my feelings, or I will crack like an egg.  I would be a terrible spy if this was a real war. “I’m not really happy to be here,” I manage to choke out.  I feel a tear start to burn my cheek.  Deep breaths.

The doctor attempts to insert my I.V. needle in my left hand, a process that went seamlessly and painlessly less than one week before with a different anesthesiologist.  This doctor, (We will call him Dr. Zeus to protect his identity, while illustrating the size of his ego. Plus, his real last name starts with ‘Z’.), can’t seem to find my vein.  He is digging around in my hand, and it hurts.  I am getting dizzy and nauseous.  More deep breaths.  Keep it together, kiddo, you can do this.

“Did you get it yet?” I squeak out, after the third failed attempt to insert the needle.  I am trying not to look, holding back tears.  I am on the edge now, but it’s a stressful day, and I think I am doing pretty well, all things considered.

“You know, you really have me rattled!” Dr. Zeus shouts at me.

I stare at him in shock.

“Doctors are just people, you know, and you really have me rattled today.  I have been doing this for 22 years, and I am one of the BEST in my profession.”

He finally inserts the I.V. at the inside of my elbow joint and stomps away, agitated.  I look down and notice one of the failed-attempt needles is still dangling from the skin in my hand.

“Can someone get this out, please?”

I am hyperventilating.  Is this the man who is going to be at my side, keeping my body in a state of calm sleep during my surgery, during my most vulnerable state, while my neck is cut open?  What are the odds of landing a joker like this during a surgery?

My husband steps in and tells the nursing staff that Dr. Zeus will not be allowed to come within 50 feet of me while I am in the hospital – we will need someone else to handle the case.  I told you he was the guy you want with you in the hospital.  He’s Superman.  He really is.

More deep breaths.

Much to everyone’s relief, the anesthesiologist who was assigned to my case the previous week is also in the hospital that day, and he steps in.  Surgery is successful.  I stay in the hospital for two days, and then I am sent home (where I file a formal complaint against Dr. Zeus).  And then, the real recovery begins… and continues…

Odds of having a thyroid nodule? 3% (of women).

Odds that my nodule was cancerous? Less than 10%.

Odds that I had cancer after a clean biopsy? Less than 5%.

Odds that I would encounter medical professionals prone to errors so frequently?  Sheesh.  Statistics are meaningless.  Meaningless, I say.

But it’s all OK.  Remember: this is ultimately a story of blessings and hope, of finding truth and singing it joyously and out loud.  We just have to trudge through some of the hard parts first. Then we get to examine them closely to discover how the good parts are possible at all. I will have you wishing YOU were that lucky “one” who had thyroid cancer by the end of this story (maybe not 😉 ).

There’s more to the story…

“My Story: The Prequel – Yoga, Qi Gong & Belief in Impossible Things”

“My Story – Part 2: To Glow or Not to Glow, That Was The Question”