The C word (that doesn’t rhyme with punt)

A caveat: For those of you who are only here for the Firefox builds and the intermittent flurries of mirth, you might want to pass on this entry, because (and here comes the apt dooce all-caps): I TALK ABOUT MY HEALTH.

Alrighty then.

In the past four months, I have had the following:

  • six blood workups, three of them extensive
  • two full pulmonary function tests
  • one Holter heart monitor test
  • one echocardiogram
  • eight chest x-rays
  • one methacholine challenge
  • one Gallium test
  • six blood pressure tests
  • one electrocardiography
  • one cat scan

Initial Diagnosis

I first heard about the possibility that I might have sarcoidosis in 2001. When I finally got off of my ass to endure a battery of x-rays at the beginning of 2004, it was confirmed. At the time this wasn’t a huge deal — sarcoidosis (or sarcoid) can be a relatively benign disease, and only in very, very rare cases is it a major issue or fatal. As my doctor back then remarked, “if I had to get a lung disease, I’d choose sarcoid.”

Sarcoid is a strange ailment, though. There’s no real known reason why people get it, and it can manifest itself in many different ways. Generally speaking it’s like getting these strange, well, growths on your internal organs — corporeal zits, as it were. For me, sarcoid dropped by with a visit to my eyes and chest, leaving behind swollen lymph glands and a case of glaucoma.

Besides some slightly blurred vision and learning to live with the routine of daily eye drops, though, sarcoid wasn’t a huge problem. I got to feel some kind of distant kinship with afflicted celebrities like Bernie Mac and Judge Joe Brown, feel thankful that my case was a minor one, and life went on.

xray of sarcoidosis

“Four years is not normal”

When we moved back to Toronto last summer, I started seeing a new lung specialist. He proceeded to prescribe an incredible array of medical tests (see above). I was also forwarded to a professor at the University of Toronto who specialized in sarcoidosis and lung diseases.

“Four years is not normal for sarcoidosis,” the professor explained. He pulled out a set of my chest x-rays and showed me my lymph glands. They looked like two ghostly jalapeño peppers floating on either side of my heart. “Normally, sarcoidosis goes away after six to eight months. You have had enlarged lymph glands for over four years.”

He them pursed his lips and looked at me intently.

It wasn’t until weeks later, when I was mid-point through my Gallium test (where you are injected with inert radioactive material, and then put into a big machine which traces the progress of the material through your system) that I understood these doctors were testing for cancer.

Bonne Fête à moi

It’s my birthday today. I officially turned 35 years old at 6:35am this morning. Normally, the passage of my birthday is not earth-shattering event. I’m incredibly lucky to feel young, look young, and generally still behave like a snot-nosed punk, so one extra year under the belt is no big drama.

Turning 35, however, seems to have a touch more significance. I don’t know if it this has something to do with the fact that I now have to check off 35-49 instead of 18-34 when I declare my age on surveys, or that when I double my age, it’s no longer under 60. Maybe it’s something as lame as that I no longer fall in the demographic whose tastes and cultural influence are eagerly sought after by marketeers.

Who am I kidding, though - what I thought about became insignificant in the eyes of the hiperati when I turned 25, didn’t it? Sigh.

Renee and I, blurrily

Ten years ago, I would have never expected that I would no longer be doing mind-numbing work for a living. I never would have guessed that I would be living with a beautiful girlfriend in a happy and healthy relationship. Moving away from Winnipeg and being fully self-sufficient in a city like Toronto seemed like a small Prairie city dream. Hell, even having cats seemed like something that would never happen.

And yet this is the reality. I pinch myself often and shake my head in wonderment, and try to not waste this life that I have.

When I spoke with my specialist a couple of days ago, we went through all of the results for the multitude of tests that had been prescribed. He explained that he and the professor initially had strong suspicions that what was originally diagnosed as sarcoid could have actually been lymphoma. He pointed out the very unusual length of time that my glands had been enlarged, and the strange results of some of the preliminary tests that they had prescribed.

He then told me that based on the more accurate, “heavy duty” tests (the gallium test, echocardiogram, and cat scan) what I have is — about as definitively as a medical diagnosis can be — sarcoidosis, and not lymphoma or cancer.

There are thousands of people who are diagnosed with cancer every day, and thankfully I am not one of them. That, and the fact that my sarcoid is holding steady and not getting worse, are reasons enough to make this birthday sweeter than pie.

I believe there’s a hoary old chestnut that says health is the greatest gift. If so, happy birthday to me.

Comments

1 | Jon Hicks said on April 5, 2005 2:49 PM

First of all, Happy Birthday! Its good to know that not everyone is a slip of a thing just out of school.

Secondly, what a relief eh? Blimey. So its still sarcoidosis, even though its lasting forever?

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2 | Lana said on April 5, 2005 4:23 PM

Happy birthday to you and your jalepenos. Glad to hear that you're in good shape.. now shoo! and go out!

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3 | Brent Gulanowski said on April 5, 2005 8:30 PM

OMG Neil, are you trying to give us a heart attack? Thank all that's right in the universe you have been spared — or should I say, we've been spared.

Happy birthday! I'm just a couple months behind you...

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4 | Dean Paxton said on April 6, 2005 3:09 PM

Happy birthday indeed. My god, I was thinking you were a goner for a minute.

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5 | Amanda said on April 6, 2005 10:57 PM

Whew. Way to give a girl a heart attack. Glad to know that you're allright. And happy birthday!

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6 | Christine said on April 13, 2005 9:36 PM

Whew. Good news, good news. Happy (belated) birthday too!

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7 | Jeremy said on April 14, 2005 4:24 AM

A relief to hear.

Happy birthday, and may all your days be well. :)

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8 | james said on April 25, 2005 12:45 AM

Hey, Neil, it's me, the guy who eats lunch with you but goes weeks without reading your blog. Don't I feel stupid right now... Anyway, glad to hear you're just sick and not dying! and of course, happy belated birthday, too, sir. And I promise I'll try to keep up with your life here as well as IRL.

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9 | Brent said on May 7, 2005 10:37 PM

Happy belated fellow saroid sufferer. I too have been through all the tests and thought I had Lymphoma but "only" sarcoidosis. Finally off the prednisone and as you say "holding steady"

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10 | Grant said on August 2, 2005 2:17 PM

Actually, your initial information about Sarcoid was wrong -- ask me how I know!. Sarc that "goes on forever" is the norm, not the exception.

For the latest breakthroughs in diagnosis and treatment, check out www.sarcinfo.com and/or http://www.MarshallProtocol.com/

( ... sarcoid diagnosed in 1986, but symptoms back to mid 70's and currently following the Marshall Protocol)

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11 | Trevor said on August 16, 2005 4:16 PM

Heppy Birthday :)

I also went through the hell of thinking i had Lymphoma 2 years ago before being diagnosed with Sarcoid.

I'm 34, and i've had no change in my X-Ray/lung function like you for over 2 years, so obviously it's not uncommon!

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12 | dan said on August 16, 2005 4:38 PM

Hey, I,ll tell you happy B-day next year now :).
I also have sarcoid diagnosed 3 years ago, lymps also stayed swollen and thought it was lymphoma for a week, fun staying up all night looking through life insurance so you know your 3 year old and wife will be ok. my sarcoid is in remission however caused severe periphial neuropothy in my arms and legs has anyone else out there had nerve damage due to their sarcoid?

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