Thursday, November 1, 2012

During which my usually positive attitude is tested...

Cholesteatoma saga, continued...

First a little bit of background: 

  • What's a cholesteatoma? A long time ago (okay, well, 3-1/2 months ago), I was diagnosed with a benign tumor-like thing in my ear called a cholesteatoma. Read more about my diagnosis and the surgery plans.
  • Complicated me: The CT scan and followup MRI, in addition to the first surgery in August, uncovered complications...story of my life. Read more here.
  • Leaky brain (as one of my coworkers puts it so delicately): My olaryntologist (head/neck/ear surgeon) explained that I would have to have neurosurgery to fix the bare dura (lining of the brain) and part of the brain herniating near my ear. He called this complication a "speed bump." Read more here.
  • Two-in-one: When I went to my post-op followup, my surgeon explained that in addition to the neurosurgery (which will require a stay in the ICU and a couple days beyond that in the hospital), he will also do the other half of the ear surgery (a mastoidectomy), which he was not able to complete the first time. So it will be two surgeries in one. So now I'm thinking...this will take me a bit more time to recover from. He wanted to schedule the surgery for late October, but I had to see the neurosurgeon first (who will do the surgery with him).
  • Arrogant surgical practice: That's when all the frustration began. I couldn't get into see the neurosurgeon for several weeks (after I called many times), and that finally happened on Oct. 18, two weeks ago. My initial impressions were not great. I'm sure he's a competent surgeon, but I found his practice to be arrogant and condescending, and full of bureaucracy. As Mike and I were waiting in his his exam room, we saw his calendar for November, much of which was blocked out. That's when we realized that a surgery date any time soon was unlikely.
  • How dare I suggest a surgery date? They told me that they could not even schedule the surgery for 14 to 21 days (when they had written authorization from my insurance company), and he's usually booked out for at least a month in advance. I asked if I could put in a request for the week after Thanksgiving. The surgeon's assistant practically laughed at me, that I would have the nerve to make such a request. She wouldn't even write down my request and refused to discuss a surgery date. She is one of those types who works for a neurosurgeon and thinks she's very powerful by association.
  • Trying my best to advocate for myself: Frustrated, I called the ear clinic and talked to the surgery scheduler, Tracy. She's had similar frustrations with that office, but she said she would do what she could to get something scheduled. I've been calling her every few days, and she has not had much luck getting any response from Alrena at the neurosurgeon's.
  • My blood pressure is rising--I can't take this any longer. In the meantime, I haven't been able to plan anything. I've been thinking end of November, but not really knowing anything, and everyone's asking me whether I have a date yet. I realize that the more I talk about it, the more stressed I become. As an activator personality, I have found this uncertainty to be agonizing. I can't plan anything, including time off from work.

Now we're caught up to today. 

Finally, Tracy at the ear clinic returned my pestering call to say that she has a date, but I wasn't going to be happy. It's December 12, just 12 days before Christmas Eve. She's right; I am not happy. Kieran has two mainstage performances at Kids Co Northwest, and one of them is on the 11th and the second is on the 12th. He's also performing all over the city at nursing homes in December. I'll be able to see a few performances, but not many. I'll miss the winter concert at school--the first one we've had at the elementary school in three years. I'll be lucky if I'm up to going to Christmas Eve dinner with my extended family; it's hard to say.

Mike suggested that we could postpone until after the New Year, but we've already reached the maximum out of pocket on our health insurance, so it would cost us a lot more money to do it in January. So December 12th it is.

All I wanted to do when I learned this was cry, and soon Mike called with the news that he had a dead battery and could I come take Kieran to dance class? I did a fair amount of swearing between the office and where he was stranded. And I wrote a rant on my Facebook status which somehow did not get posted (probably a good thing).

I've been feeling furious at the neurosurgeon and his power-hungry assistant. It's all him, because my ear surgeon would fit me in whenever he could. We were able to schedule my first surgery with very little fuss, for a few weeks out. Then I realized that it's probably not good karma to be internally spewing venom to the guy who will be operating on my brain.

Most of the ranting and raving is done, but it's going to be very hard to be polite when Alrena finally calls with the details of the surgery. Should I tell her that I have a metallic taste in my mouth (indicating leaking spinal fluid)? (Just kidding.) Should I tell her how pissed off I am? Or should I just accept my fate and be Zen about it?

And this is about the time when my "this is a first-world problem" kicks in. I realize that if I were in Europe or Canada, I would probably be on a LONG waiting list for this surgery, longer even than a few months. I'm glad she didn't call to say that they couldn't fit me in until January or February. I'm glad that my home or children were not swept away in Hurricane Sandy. I'm glad I have a job and health insurance...and a family and friends who love me.

I wanted to get this in writing so I don't have to repeat myself...and so I can start focusing on the time I have between now and December 12...and get all ready for Christmas, which I might have to miss, depending on how I feel...and also so I can try very hard to put the negativity and anger behind me and try to be positive.

It's hard to feel positive today, but I can already feel my mind shifting (from this afternoon). By tomorrow, or the next day, I'll find a way to deal with it and move on. Thanks for listening, and for your prayers and positive thoughts.



  1. Marie - hang in there. You are right - surgeons are (mostly) just an arrogant lot and neurosurgeons.... well I have a silly joke for you. What is the difference between neurosurgeons and God? God doesn't think he is a neurosurgeon!

    Hang in there! You will get through this - and you will have your amazing family to help you every step of the way. Please put me on a list of people to bring food! I have a lot of paying it back to do!

    Hugs! Wil

  2. What a wild, unpleasant ride! I am so sorry about the timing, the subpar bedside manner of the surgeon, and his crappy staff. You are certainly due for some good news.
    Please put me on the food brigade list, too. I would be happy to help.

    :) Diane

  3. how frustrating! But sure enough, you started to put a positive spin on it toward the end of your post. Yes, so forunate to have a job and insurance - take it from a self-employed person who pays up the yin yang for insurance. I'm gambling on good health, if I couldn't work I can't pay my insurance.

    But bummer nonetheless about the timing. But of course better than after the first of the year!

    1. Thanks, Jill. Yes, my insurance is way more expensive than it was years ago, but I know it's even more expensive to be self-employed.

  4. Thanks Will and Diane. I appreciate your support!

  5. Sending you some reiki vibes to help you continue momentum with focusing in a positive direction. XOXO

    1. Thanks Jeanette--I will take all the reiki vibes I can get.

  6. Marie, good job writing all this down,perfect therapy! You took it from the inside and got it out, now take a deep cleansing breath...even shed some tears if you need to! You did a great job advocating for yourself, now it's in God's hands with his perfect timing..we dont know the reason why. . You have a lovely family who understands, knows how much you love them, and knows that you would be at these special functions if you could, but honestly, you will be giving them a bigger gift by getting healthy! Lots of prayers, Love Laurie

    1. Thanks, Laurie. You are my role model for advocacy, don't you forget it!!

  7. Wow, that is hard. And you are full of grace. My pet peeve in the world is medical office peons with power trips. I'm praying for you! Ellen

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