The Lurking Bear

I read an article last week, Life after near-death:  why surviving is only the beginning that detailed life after near death experiences.  It really resonated with me and made me reflect on how I'm doing after my stem cell transplant.  Now, maybe I wasn't at death's door but I was a lot closer than I've ever been, say maybe in death's zip code, just passin' through thank you very much.

The article starts out telling the story of Patricia and Trevor who were attacked by a bear while on a hike in Waterton Lakes National Park, Canada.  They were both seriously injured in the attack, requiring extended hospital stays and surgeries, and both were left disfigured.  The article details how Trevor rapidly moved on from the experience and looked to face life as a new man.  Patricia was very fearful and was never able to regain any peace after the attack.

The article describes Trevor's ability to repress his fears and use humor and logic may have helped his ability to move on--

Psychiatrist George Vaillant, in his Study Of Adult Development, found that this type of suppression was straightforward, practical, and it worked. "Of all the coping mechanisms," he wrote, "suppression alters the world the least and best accepts the terms life offers." Contrary to what many psychologists would have you believe, he says, simply suppressing a traumatic experience and getting on with business is "the defensive style most closely associated with successful adaptation". Trevor forced this hard-nosed logic to dominate over emotion, telling his wife, "We won't be attacked again, Trish. We're predisastered." (In quoting from the movie The World According To Garp, he was employing one of the best strategies for successful adaptation: humour.) In the midst of the attack, Trevor recalled feeling distant and philosophical about it. He had seen the bear attack Patricia and was under the impression that she had been killed. When the bear returned to attack Trevor for a second time, he later told his wife that he was convinced he'd die, but his only reaction was curiosity. He thought: "So this is how I die." Patricia's response to the bear was pure panic and terror.

I've used many of those techniques myself in trying to manage my reaction to my disease...my bear...with humor being my go-to response.   I love the predisastered quote. That sentiment is what drives my crazy behavior like not using sunscreen even though I've had five basal cell carcinomas removed and not caring about my cholesterol anymore.  Yeah, I'm living the wild life post-transplant.

I've always been one willing to fight and work hard when needed and I'm rarely intimidated.  I've always been that way, probably due to my brother's attempts to repress me, starting from the moment I was born, to hear my mom tell it. (Help, help, I'm being repressed!)  He taught me early how to stand up to an opponent that, based on appearances, you have no chance of beating.  Thanks Rob!

I really believe that attitude has helped me emotionally and physically.  I've met some patients who have become fearful and retreated from the world when diagnosed with AL Amyloidosis...reacting as Patricia did.  I've met some who have faced it as a big challenge they need to get through and approach it with confidence and optimism...reacting as Trevor did.  I wonder what causes the different reactions.

Patricia was never able to regain a joy in life because she was always afraid the bear was lurking to attack her again.  I can really relate to this feeling due to the relapse rates of AL and Multiple Myeloma.

I often say that AL may be incurable but neither is asthma or diabetes and I'm counting on being able to manage the disease well into my golden years.  The problem is, unlike AL and MM, asthma and diabetes are not continuously evolving in this sinister, genetic mutation arms race trying to gain an advantage.  The bear is out there and, at some point, he may regain his strength and grow stronger and more threatening.

Now, there's a word I see used quite often to describe the plasma cell clone that causes AL.  That word is "indolent".  In medical terms, indolent means 1) causing little pain 2) slow growing.  I knew when I first read that term I had a flashback to Jane Austen or the Bronte sisters or some other 19th century writer and I thought it was applied to a lazy, slovenly character, usually the sort of man that would not be an advantageous match for one of the female protagonists.

I found the character in Pride and Prejudice whom Jane Austen calls "indolent."  It's Mr. Hurst, who married Louisa Bingley.  If you've seen the BBC mini-series with Colin Firth (sigh) it's this guy.  That's how I picture the AL clone, lounging around in the parlor of my bone marrow, drinking wine and eating snacks, not really doing much.  More in line with the non-medical definition of indolent--averse to activity or showing an inclination to laziness.

If I have MM, well, lets just say I've never seen the term indolent used to describe the MM clone.  That guy seems a bit more busy and industrious than our Mr. Hurst up there.  I guess that's why the percentage of plasma cell clones in your bone marrow is part of the differential diagnosis between AL and MM...just how much work has that little clone been doing, knowing that if he's been busy before, he'll get busy again at some point after the transplant.

But, I won't really know what the clone is doing until that activity manifests itself in a relapse.  And I can be like Patricia afraid to move along the trail because I might encounter the bear.  Or I can be like Trevor and get on with my life.  I've said all along, the only thing I can control in my whole situation is the depth of my faith and the strength of my attitude.  If the bear is going to return, all my worry and fear until then will do nothing but keep me from fully enjoying the remission I currently have.  I'm on a trail in bear country, there's no changing that.  I can choose to curl up in a ball and wait in fear, or I can keep moving forward upon this path which God has placed me, enjoying the scenery and making progress in my life until the bear comes back.  I think I'll choose the latter.

In 1993, Amy and I went on a hiking, biking and rafting trip through Yellowstone. One of our guides had served as a bear naturalist with the US Fish and Wildlife Service.  She said that if you encounter a bear on the trail, you should never run.  You should stand up as tall as you can and wave your arms to try to make yourself appear as large as possible and stand your ground.  Now, she did admit the first time she encountered a bear, she turned and ran out of instinct.

I think that's a good metaphor for what I need to do if my bear returns--try to be as big as possible, emotionally and spiritually, and stand my ground.  I pray I'll have the grace to overcome the instinct to turn and run.