Tuesday, November 27, 2012

The Two Year Mystery Illness

Sunset at Pier 17

We sat in the café, sipping tea and watching the sun explode into colors over the ocean.  This was our Friday ritual; tea, sometimes a scoop of brightly colored gelato if the week had been especially hard, and always conversation.

“I can’t believe how parallel our lives are,” Anne would sigh and look out the window at the water.  

It’s impossible to tell you the story that I’ve ached to spill on my blog for the past two years without including Anne.  Despite all my connections on Twitter and through blogging, this one was kept quiet-only mentioned in direct message or email, never actually put in print for public consumption.  Late at night when my brain would spin situations larger and scarier than I dared to say out loud, some of you would talk me down from the ledge, soothing me with your kind and encouraging messages so that I could sleep.

Anne soothed me most of all, by sending emails, photos, recipes, and weirdly enough, she was the only person who really understood what we were going through because, as she pointed out, our lives were so parallel it was bizarre.

Things began a few years ago when John began to inexplicably gain some weight.  While it seemed completely benign at first, because it’s common for people to gain a little as their age, for my usually fit and active husband, it was odd.  Over a period of about a year, he somehow put on 70 lbs even though his eating habits didn’t change at all. I assumed that he was just getting older, a little less active, and it was nothing serious. Oddly enough, just as suddenly as he began to gain weight, he began to lose it. At first, we thought this was fantastic-he’d been trying so hard to get rid of those extra pounds!  Neither of us could figure out how this was happening since he still ate the same as he did before, but who wants to complain when you are shedding pounds, right? But this?  This was different. Past the stage where one just looks good, John's weight plummeted to the point where you could see his ribs, and it just wouldn't stop.

The phone call came from work in the spring; not really sure if he had a minor heart attack or something else, John had gone to the doctor and a short time later we were at St. Paul’s in Vancouver, having him evaluated.  

It’s the fact that he had cryptococcal gatti, we reasoned.  The fungus had gotten into his arteries, and one was weakened a bit.  When he was stressed, as he often is at his job, it would begin to flutter. 

Next came the surgery, and bruises.  The slightest bump on his arms would turn into angry red spots that took ages to heal.  They started off small at first, but soon John’s arms were covered in them and occasionally a bruise would even split open and bleed, dripping blood down his arm.  Back and forth to the doctor he went but each time, they came back with a seemingly plausible explanation.  At first, I clung to those explanations, hoping that possibly there was a simple fix.

“Anne, it can’t be cancer.  I don’t know what I’ll do if it’s cancer.”  She reached across the table as we both looked out to waves lapping on the shore.

“I know.  I don’t know what I’ll do if Scott’s cancer is back either.  We’ll do it.  We’ll get through it.  Whatever it is.”   She slipped me shortbread for the next trip to the doctor, to keep our spirits up.

Countless sleepless nights, tests after more tests, days spent in Vancouver at hospitals while we both ferried our husbands to doctors, Anne and I hoped and prayed they’d be okay while trying to keep each other from cracking.  She would retreat to her garden, trimming and lopping the trees by her house, while I hit my kitchen and began cooking in earnest. I never let him see me cry; tears were for late at night when he was asleep on the couch, when I was driving to work, or in the shower.  Be strong, Karen. They had to be okay. 

They just had to.

Finally in November 2010, things came to a breaking point.  We went to the doctor for another test and as I sat in the car, I finally really saw John for the first time in months.  So frail and thin, hunched over, old looking, even his skin was grey, the horror finally dawned on me that something was horribly, horribly wrong.  His adrenal glands were swollen, he had developed diabetes type 2, and was obviously very unwell.

The doctors continued with every test you can think of, as they hummed and hawed and threw out some kind of diagnosis, but then said that the other symptoms couldn’t possibly be caused by that, so they continued to put John through test after test, some painful and horrible, others not so bad. At one point I phoned our GP and literally yelled at him, saying that if he didn't find out what this is, and find out soon, I'd have a dead husband and that is completely unacceptable. 

Finally, the revelation came to me in a Science 9 class, of all places.  The kids were studying biology, and talking about how the systems are all related and what can happen when something isn’t working right.  Right there in the midst of teenagers, bits and pieces of symptoms that had seemed like a giant puzzle suddenly clicked together, and I knew without question what it was that had been making him sick all these months. We called the doctor, there was another test or two, and weirdly enough-I was right.

That Friday like clockwork Anne and I met for coffee and marvelled yet again at how our lives seemed to be so similar and yet, still different.  Her husband had been diagnosed only a short time earlier with cancer.  While John didn't have cancer, his illness was still very serious. 

Instead, my husband had hepatitis C.

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