December 20, 2015: The language of disease

The language of disease

Journal entry by Felicia Friesema

 

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I think I’ve written and rewritten this post a few times.  I’m navigating our language in unexpected ways, trying to find the right words to convey incredibly complex feelings and concepts that I’m resistant to voice.  I feel very strongly that giving voice to things makes them more real.  More unavoidable.  Confronting this language and then using it has been both a purge and a stab.  And each time we lick a wound, another one appears.

The word pathology has a few meanings.  It’s the science of the causes and effects of disease.  It’s also defined as a mental, social, or linguistic abnormality or malfunction.  It’s also seen as the typical behavior of a disease and it comes from the medieval Latin pathologia patho meaning disease and logia meaning a subject of study or interest OR a characteristic of speech or language.

From all of this I’m defining pathology as the language of disease.  And language carries with it all manner of potent idioms, foibles, metaphors and similes.  So when I tell you that the pathology of Steve’s tumor is a stage four Glioblastoma Multiforme, you understand that this is more than a diagnosis.  It introduces a whole catastrophic language to our doorstep.  It is the most common and most aggressive type of primary brain tumor.  And at stage four, it’s very advanced.

I buried the lede there.  But I find plopping this info into the first sentence akin to slapping you all in the face.  As I’ve had a chance to sit and chat with some of you, I’ve had to remind myself that for many of you, you’re just now processing this info for the first time and are experiencing all the intense and heavy sadness that comes with that first flush of understanding.

This sadness, this ever present malaise, has been with us since Thanksgiving, and anxiety about what was happening to him started even before that.  While we’re nowhere near being accustomed to it, it’s something we’ve had some time to assimilate into our daily lives, as much as one can at any rate.  We’ve known the pathology since Steve’s first surgery.  But we’ve had to go slow in talking about it, in part because we were handed a new language that needed deciphering.  Even the word Glioblastoma sounds violent.  Multiforme means varied and versatile.  Knitted together, it’s a violently malignant enemy that adapts to new challenges, including the treatments designed to destroy it.

How and why are dead end questions.  No one knows.  No one.  Steve’s family history is empty of cancer tragedies so the genetics are murky at best.  I’ve blamed everything from my cooking to the car accident he was in a few years ago to Fukushima.  None are to blame.  And even if they were, what good would it do?  The tumor is still there.  We get no peace from why.  The end result is the same.

Our culture is pretty dysfunctional when talking about quality of life and death.  And with that sentence, that language, I’ve scared off a few people.  This is the path.  This is what we are facing.  This is where our humanity and desire for life clashes with our vulnerability and our inevitable mortality.  Steve is deeply saddened by what is coming.  Not for himself as much as for his mom, who he hoped to outlive.  For me, the wife he had hoped to enjoy for another 20 or so years of marriage and home.  For his friend Larry, whose friendship he hoped to share past the 50 year mark.  This will sound silly, but even for his car.  We hit the 150,000 mile mark on the odometer last week.  I took a picture of the dash to commemorate it and he said, “I was going to drive this until it hit 300,000.”  That additional 150K miles represented years of roadtrips, our favorite form of escape.  He squeezed my hand and looked at his feet.

We respect everyone’s right to choose the direction of their own final care.  For many, this means the employment of heroic means to preserve life not matter the cost or prognosis.

This is not our choice.  And I intend to honor every one of Steve’s wishes by any means necessary.  He will have as peaceful and as loving an end to his existence as is humanly possible.  Could the treatments work?  Yes.  For a time.  But there is no cure.  And eventually the treatments will do the same thing as the tumor.

We don’t know what this means for his long term care needs.  We don’t even know what kind of time stamp we can put on “long term.”  The doctors have been understandably reluctant to give us anything that conforms to a calendar.  When we first met with our surgeon, he said maybe a year, but that was before the biopsy and it was said with great reluctance.  Steve pushed for that answer that day.  Since then, he has pushed with each doctor we’ve met with.  “How long,” he asks.  It’s the one thing they can’t be fully clear about.  So instead they tell us about statistics, about men Steve’s age, about the location of the tumor, about its size, about its growth.  All these variables together equal “unfavorable outcomes.”

I wish they would say it.  Death.  It means death.  It means this will kill him.  You could tell me one month or one year, it’d still be way too fucking soon.  But we need to hear that.

I also means that planning for this is nearly impossible.  We’re already looking into alternative forms of funding.  And yes, the Give Forward page has helped us already.  Thanks to everyone who has so generously supported us.  But I’m nursing those dollars so carefully in anticipation of the possibility of months of at-home care.  Have you signed up for long term disability insurance at your place of work?  If they offer it, take it.  We didn’t.  We didn’t and we’re forced to make some difficult choices because of it.

The past couple of days have been quiet and restful for Steve.  Every morning I ask him if he feels any pain, and every morning he shakes his head no.  When I asked him this morning he gave me an annoyed look as if to say, “Seriously? Again?”  So I explained that from here on out, I’d ask that every morning.  His comfort and peace are my foremost concern and at some point, the shake will become a nod.  And I will need to act to bring him comfort.  Thankfully that day hasn’t come yet.  He spends his days resting and preparing for treatment.  I spend my days collecting the tools needed to ensure his comfort.

Life and death are unfair.  It’s a constant of our existence.  Suffering is universal, no matter what we do to avoid it.  The only thing that makes any of it worthwhile is the love we share with one another.  We have been the recipients of so much astounding beauty, reconciliation, and devotion the past few weeks.  It’s a cooling salve on the heat of our emotions.  Many of you have sent hand written letters of such heartfelt poetry that I’ve had to stop reading them midway because of the tears that blocked my vision.  We wish we could respond to all of them and hope you know we cherish the words and the intent of everything you say.

This week starts treatment for Steve.  For many of you, it’s the week of Christmas.  If you are alone and suffering this holiday, please know our hearts are with you and we send you our best wishes for a loving and happy New Year.  This week should be about joy and peace, goodwill towards all.  We haven’t lost sight of this, not even now.

I want to end with something that I shared with Larry early on, before we went public with Steve’s condition.

On our fridge, we’ve kept a memento of our friends Jeff and Dylan’s wedding.  On everyone’s plate they had put a small neatly tied copy of Shakespeare’s Sonnet 116 on love.  It’s been on the fridge for years and I read it almost every day.  There are two lines that always hit me:
O no, it is an ever-fixed mark
That looks on tempests and is never shaken

This sounds silly now, but I wondered back then if Steve and I would ever have a love like that.  I knew we were in love, but it was still untested and a little new and I had all kinds of doubts, mostly about myself.  Looking back I think Steve knew what we had and was just waiting for me to catch up.  He was impatient about everything except me.  For me, he’d wait.

At the time I thought Shakespeare was just an eloquent romantic.  Turns out that he was fucking brilliant.  The trick is that until the tempests come, you don’t really know.

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