Recovery – One Inch At A Time

It’s been a while since I wrote this or even felt this way.  However, it still finds its relevance.  Look no further than the Elizabeth Edwards Story to see how and why.

Harder than fighting cancer has been getting it out of my head. Part of the reason stems from the fact that I’m no Lance Armstrong Story.  I didn’t take a beating and then bounce back to full stride… more like ‘got smashed like a bug and then crawled back out of my hole.’  Ever since I got cancer I’ve been dealing with one side effect after another, and am therefore constantly, almost relentlessly, reminded of it.  And to date, I’ve never fully recovered physically or mentally.  In fact, after finishing treatment in November 2004, it took an additional nine months to get back on my feet just to go back to work part time.  And although my strength grew steadily to a point where I at least appeared to be able to work at my former level – forty-plus hours a week and all – I never really did.  A huge amount of my brainpower each day went into energy management, leaving me with little to nothing after work was over.  And after two-and-a-half years of this, of trying to keep up day after day, my spirit and physicality were once again exhausted to the point that I had to go back on disability in March 2008.

Aggressive treatments (radiation therapy and systemic chemo) like mine, although lifesaving in the most immediate sense, are by no means free in the long run.  The physical and psychological impact is often so great that it reverberates into the future to distances you couldn’t have predicted… in ways you couldn’t have imagined.  In hindsight (and the doctors won’t likely tell you this, for fear of weakening your spirit) I think that one of the most practical things a patient should realize – if you plan on engaging in this level of treatment – is that any weakness you’ve got will be aggravated by it.  And it’s even possible that things that weren’t working too well might just break and never repair themselves.  I think for the most part people just assume that when they go into cancer treatment they’re dealing with one thing – the cancer.  It’s a coping technique, and the best way we know to contain the problem and fear.  But what must also be embraced is that the treatment is its own animal.  And that creature does not just go after the cancer.  It sledgehammers everything that gets in the way of it doing its job.  And if its aggressive enough, and something in your body is weak enough, it may just smash that thing (like a kidney or liver or other) on its way to supposedly ‘curing’ you.  Knowing this scared the hell out of me, and still does even now, because what I’m saying actually happen to me.  But it also got me prepared for the kind of battle I would actually be waging and made me fight that much harder.

Seemingly randomly, during my third of seven chemo cycles I began having serious vertigo and nystagmus (eye vibration) episodes.  From then on I couldn’t walk in a straight line to save my life.  It was like someone flipped a switch and I was drunk all the time.  We’d be walking the four blocks to the cancer center from our apartment in New York and some car would honk a horn or something and I’d drift right into it or the nearest wall.  It was bizarre considering that I’d always had what I considered to be decent balance.  Multiple brain scans later they still couldn’t determine why my eyes would randomly start vibrating and I couldn’t stand up straight, and chalked it up to treatment damage of some unknown sort.  And we were assured multiple times that “these chemo agents were not supposed to damage anything in the vestibular system,” although they were known to cause neuropathy (nerve damage) to the extremities that may or may not become permanent.  We found out several years later that my ears had likely been damaged during a hospital stay after exposure to multiple high-dose antibiotics at the age of three, some of which were known now to cause vestibular damage.  At that point I likely lost 90-95% of my ability to sense acceleration and simply adapted to using the remaining 5-10%… no big deal for a three year old with, as yet, still malleable neurology.  Pan to the future… high-dose neuropathic agents invade, damaging a wide range of peripheral nerves.  For people with no prior vestibular damage, these treatment agents might well knock out about 5-20% of their ability to sense acceleration… no big deal and nearly (if not totally) unnoticeable under normal circumstances, therefore making it impossible to log as a standard side-effect.  But for people with prior damage, a 5-20% loss of use would spell the total loss of the subsystem.  In other words – chemo likely just finished me off.

That was one of four major side effects I was saddled with from treatment.  The second and third were sterilization, and a massive psoriasis outbreak that occurred during cycle seven.  Sterilization needs no explanation.  The simple fact is that it was permanent.  Psoriasis, on the other hand (especially in this case), does.  Psoriasis is supposedly an auto-immune disorder that causes your skin to grow more rapidly than it should – an immune system inflammation response that puts skin production on overdrive.  It’s something that I’ve had to deal with to a minor extent my entire life.  Problem was that this outbreak occurred during a period when I had no immune system… odd.  Cycle seven was what the doctors called “the killing blow” where all of the nasty agents used in cycles one, two, and three came back to haunt.  The intent was to blast you as hard as possible (just short of killing you) on the last cycle in order to eradicate every last possible micro-metastases.  And believe me when I say that it worked.  The drugs were killing everything so fast that it took eight blood transfusions and six platelet transfusions just to keep me going… sixteen pints of blood in five days.  And during this time I watched as my skin began to burn off of my body.  Again – the doctors couldn’t figure it out.  “This is supposed to be an auto-immune dysfunction… and yet you’ve got no white blood count at all.  Hm.”  Nine months later, even with a functioning immune system, I was still slathering steroid cream across 70% of my body.  Three months after that it started going away… but it took significant changes in diet and lifestyle to do so.  To date I’ve still got some fairly serious vertigo issues, but the psoriasis is now completely gone, no thanks to the medical community or their assumptions about what psoriasis actually is, what actually causes it, and how to truly cure it.  As far as they’re concerned, there is no cure even though I somehow did, and without drugs.

The exhaustive collapse in March 2008 was no mere coincidence.  My digestive system had been in distress for seven months by the time they scoped my stomach and small intestines… only to find that I had radiation damage.  The intestinal scarring had evidently rendered the segment less absorptive along with creating a fibrous stricture that wouldn’t allow food to pass.  Food had been backing up in my pipes, rotting for months, until the fateful moment that they unplugged the stricture.  And it’s not as if everything went back to normal after that… although I could finally eat regular sized meals again without the urge to launch two hours later.  The inability to absorb necessary amounts of nutrients has its own ‘eccentricities’ so to speak.  First – you’re always tired.  I never seem to absorb enough to recover from any significant amount of exercise or endurance activity, meaning that my muscles don’t uptake enough nutrients to refresh themselves properly.  So they’re constantly seizing up.  And if I do try to maintain a high activity level, I’ll begin burning calories faster than I’m absorbing them… which means that I’ll start losing weight.  Every time I’ve pulled something like this I lost about a pound and never gained it back.  Fifteen pounds of loss later, I’m now down to a bony little 127.  And then there’s the subtle fact that now, rather than sensing acceleration via the vestibular system, I’ve learned to compensate by using my eyes and overall musculature.  That’s how I can still tell I’m standing and where I am in space.  Needless to say, this type of feedback is much slower and less efficient than what you’d get from your ears… and energy consumptive as a result.  Ultimately, the more tired I am, the less I can walk in a straight line or drive (seriously scary).  So… like I said – treatments like mine are by no means free.

Getting cancer out of your head. Regardless of whether the disease is out of my body, it never left my mind… not just because of all of the physical side effects from treatment.  It took years for me to understand why there’s so much mental friction.  What is it that’s bothering me?  Why can’t I get past it?  Something like this happens to you and it’s like getting electrocuted.  You’re suddenly out of phase with everything and everyone else, traveling at a different speed, with different needs, and a totally different perspective.  It’s like being thrown into another dimension right next to everyone else but never able to get back to them.  Being an active, social, athletic young adult and then suddenly being reduced to an invalid within about six months is hard to take emotionally.  But harder than that is thinking that it’s possible, and trying, to become quote-unquote normal again.

Months after returning to work as an electrical engineer in September 2005, I began to lose my sense of empathy and develop, instead, an unnatural sense of loathing and hate for every apparently healthy person I knew.  It was all I could do to conserve and dispense energy efficiently, try to reintegrate, and consciously focus on doing my work.  Conversely for them, all this was effortless and unconscious.  And at the end of each day these healthy thirty-something friends of mine would still have plenty of life left to go out and do more while I went home and retired to bed.  It eventually became apparent to everyone that I couldn’t keep up.  And slowly but surely I was ex’d off of just about every extracurricular activity since no one would slow down.  That was really the first thing I noticed about my old crowd.  They were all on overdrive all the time, in constant need of stimulus and activity, completely self absorbed and incapable of changing speed.  And before all of this happened, I was one of them.  Needless to say, I had to reevaluate who to really befriend and who to simply associate with.  The oddest thing is that these same people supported me very strongly throughout cancer treatment.  So in returning, I just naturally assumed that they’d be consistent.  So why weren’t they?

March 2006 Landmark: Recovery point reached where I could finally walk for about two straight hours.  Let the comedy begin…

“John – what are you doing on Saturday?  Lets go for a hike.”
“Well… how long can you go for?”
“Two hours.  But we can go to Forest Park in town or something.  It’s close by and we can turn around at the hour mark.”
“Dude – If I’m going to set aside time to go hiking, I’m going for four-plus hours or nothing.  Otherwise it’s just a waste of time.  We’ll go when you can do four hours.”
“Oh come on.  It took me six months just to get up to two hours!  Are you telling me you can’t spare two frickin hours?  It’s in town for crying out loud!”
“I’m busy man.  We gotta plan things like this.”

Three weeks later – same thing.  Four weeks after that – same thing.  Finally…

“Look man – I just want to hang out.  We haven’t done anything in forever.  The hike is just an excuse.  Lets go for coffee or something.”
“Sorry dude – I’ve got plans.  Lets get together next week.”
“Okay – whatever.  You call me if you’re interested in doing anything.”

A lot of people treat me like this now.  I don’t think they’re doing it consciously.  It’s probably just that at some basic level they’ve realized I’m damaged goods and should therefore be purged from the pack.  Or maybe it’s that we’re all living in some sort of alternate TV-reality these days… constantly being juiced by information about people movin’ and shakin’, on the go and doing everything all at once, regardless of how ridiculous, dangerous, or overwhelming.  Everything is drama, shock value, and saturation.  And slowly but surely maybe we’ve come to believe that this is normal.  A cancer diagnosis and treatment are indeed dramatic and shocking, and therefore attention holding… especially when the victim was in their prime in their mid-thirties.  And people don’t have to slow down much (or often) to throw in some occasional concentrated support.  Not unexpectedly, this is in line with TV-reality and therefore naturally easy to accommodate.  But the long haul that occurs afterwards lacks stimulus and story content… and may therefore be more difficult for our hyperdrive generation to embrace with any amount of empathetic handling or care.  Whatever the case, constant reminders about being an outcast doesn’t make it any easier to get cancer out of your head.

And like I said – I grew to hate them for it.  The darkness was almost all consuming.  It filled every crevice of my being and washed over everything that I did.  And it ate at me in a way that I can’t even describe.  I couldn’t be like them, and I couldn’t make them understand, and I wanted so badly to make them suffer like me so that they’d just slow down and realize how much they took it all for granted… that beautiful illusion of immortality, of security, and control.  And when I realized that it was beginning to destroy me, my marriage, and might even make me sick again, I started to gain some perspective… that this was my issue to overcome, not theirs, regardless of how unfair.  And it was my life that would need a new direction.  That day coincidentally occurred in March 2008, when I finally just gave up and decided to do something else that would accommodate my weaknesses.  In other words, it took a fifteen round physical knockout for me to let go of my frustration and reevaluate.  Once I understood how hard I was hanging on to everything and wouldn’t let go, it was much easier for me to realize why maybe they couldn’t either.

The longer I live… and the more I experience… the more I realize that nothing is ever as simple as it seems.  My struggle with holding back the darkness is so much more complicated than these simple feelings of betrayal.  The minute they removed that intestinal blockage and I was separated from work and its stressors, my head started to clear.  And I was reminded again that the combination of physical and emotional pain was indeed creating a potent negative spiral.  But that really only scratched the surface of what happens in someone’s head who’s been through something like this.  It was thus that I finally decided to make a fateful phone call in late March 2008.

“Hey Erin – How’s it going?” I sighed.  “It’s been a long time.”
“Cliff?! Is that you?  Oh my God – it’s great to hear from you!  How are you?”
“Ah.  On disability again.  Imagine that,” I mused sarcastically.  “I was wondering if I could come by to talk.  Plus – I want to see your new office.”
“Yeah absolutely – no problem – we’ll be here all afternoon.  And it’s not busy today, so come on over.  I can’t wait to see you!  This is so great!”
“You too!  I’ll see you soon, okay.”

I became friends with Erin when I first moved to Oregon in 2001.  Back then we both worked at the same company.  She’d had uterine cancer a couple years prior, and although physically fine, was quietly dealing with the emotional fallout the entire time we worked together.  Back then I thought she was crazy.  She’d make decisions that I considered to be totally unreasonable and irrational – the last being to walk out of her high paid job at the company to go start from scratch.  It was like watching a fish flopping around on dry land.  At that point I’d just about written her off.

“What do you mean you’re leaving?” I’d balked.
“I can’t do this anymore!  I can’t be part of this.  This place is torturing me,” she expelled in apparent pain, almost writhing.
“But there’s no way you’re gonna find another job that pays this well!  How many companies in Portland need laser engineers?” I reasoned hotly.
“Almost none besides this one…” she sighed.  “But it doesn’t matter because I’m not gonna do this anymore.  I’m getting out of high-tech and going back to work at REI for a while until I can figure out what to do next.  I’m never coming back to this.”

Shortly thereafter she quit.  With my nose stuck firmly to the proverbial high-tech grindstone, our contact was touch-and-go after that… until, ironically, my own cancer diagnosis in May of 2004.  She came to my birthday party just before we were whisked off to New York for treatment.  And then radio silence again until our return to Portland in 2005.  Thereafter things were spotty at best because I was mad as hell at her.  Other friends had called and sent emails all throughout and after treatment, but nada from Erin during that entire torturous period.  Not one word.  And she was the only one I knew of at the time (besides the guys in my treatment group) that could even remotely relate.  It was the biggest insult I felt I could’ve ever received… at the time.

I went back to work, all the while juggling my own physical and emotional luggage.  That was more than enough to keep me busy and preoccupied.  Even so – every couple of months someone would approach me, pale faced and terrified.  A friend or family member had been diagnosed with some form of cancer and they were groping for perspective… something… any life preserver I could throw to make them feel less violated and more secure.  Some even asked me to talk to their loved ones directly.  In light of what happened with Erin and how strongly I felt about it, I thought it the least I could do.  Person by person, instance by instance.  There was Mark’s dad with a form of operable pancreatic cancer; then Barb’s friend Kay with metastasized breast cancer; and Paul’s nephew with leukemia…  And then finally in early 2007, my good friend Diana was diagnosed with preliminary stage breast cancer.

Diana and I had been friends for almost twenty years.  Five years working closely together in Fairbanks, Alaska at the local power company and then off I shot to graduate school.  Many moons later we we’re still in touch when her and Joe (her husband) retired and moved to the west coast.  Then Joe died of diabetic complications and she was alone out there in Washington.  So we grew even closer.  Two years after his passing she got breast cancer and was immediately enrolled into a four-month treatment program.  I could feel her pain acutely before it even started.  And being alone through something like this… I couldn’t even imagine.  She assured me that they’d caught everything early, making the treatment way easier.  But for that entire four months it was always on my mind.  So we sent care packages and called almost relentlessly to keep her spirits up and distracted.  And her two boys did the same, although from a greater distance since they were still living in Alaska.  And when it was over I breathed a long, long sigh of relief.  She was still tough enough to get in the car and drive up to Alaska to visit the kids for the summer.  That’s how good she was doing a month after treatment ended.  But it took an emotional toll on both of us.  Neither one of us called the other for about five months.  By then I was in the throws of dealing with my digestive problems… but that wasn’t really what made us stop talking.  We were both just really tired.

Things went back to normal after that and we got in regular contact again.  But they didn’t go back that way with everyone else.  I stopped making myself available to console others.  And of the four guys from my treatment group, I could only find the will to continue to keep in touch with Kevin.  He was the one I developed my closest friendship with.  And he’s really been struggling to survive.  And I feel that… deeply.  I don’t know what happened to me emotionally, but think that at some point I started to run out of that form of energy.  Everything began hitting me directly, with nothing to mediate its intensity.  So in the spirit of self-preservation I started to shut down.  It was the only thing that I could do to…

“How did you do it?” I asked intently.  “How did you keep yourself from exploding?  I can’t take this.  It’s like I can feel everyone’s pain the minute it happens.  And I can’t get rid of it.  So now I’ve got mine and all of theirs.  And everything stresses me out, no matter how small.  I can’t make any kind of a commitment without feeling like I’m going to have some sort of anxiety attack.”
Erin looked at her husband Matt, who understood immediately what was going on and gracefully disappeared into the labyrinth of his dental practice.  “Let’s go over to the lounge,” she gestured.  “Do you want some tea or something?”
“Yeah,” I replied with apparent distraction. “Thank you.”
“I gotta be honest with you Erin,” I continued. “Back when you were dealing with this yourself I thought you were insane.  I really did.  The things you were doing made no sense at all… at least not to someone clueless and healthy.  And when you didn’t talk to me during treatment it totally pissed me off.  I just couldn’t believe it.  But now that I’ve been living in Crazytown for a while myself, I completely understand where you were coming from,” I mused sardonically.  It was the first time I’d ever broached the subject of how I actually felt.  She just paused, smiled, and handing me a hot cup and the tea bags.
“It’s hard Cliff.  You just gotta ride it out.  Take things day by day and do what you can to take care of yourself first.  If you can do that, everything else will fall into place,” she caressed softly.
“But I feel terrible!” I railed.   “I’m on disability again and putting Cris through a bunch of changes that will likely force her to switch careers, among other things.  And I’ve been a physical and mental wreck for months… maybe years.  I don’t want to keep doing this to her.  I wish I could stabilize.”
“Everybody makes their own choices.  She chooses to be with you because she wants to be there, not because you’re forcing her to.  Matt did the same thing.  I felt the same way.  I put him through hell.  And believe me, I didn’t mean to.  He still loves me… always understood.  Do what you need to do to take care of yourself.  Focus on what you need to do to get better.  You can’t help anyone else if you don’t do that first.”
I took in a deep breath.  It was so simple and I was having so much trouble doing it.  All I had to do was focus, and that was the thing I was finding the most difficult to do.
“One thing at a time,” she reinforced.  “Step by step.  Don’t look at everything all at once or you’ll just keep getting hit by one tidal wave after another.”
“That pretty much sums it up,” I gestured waving and laughing uncomfortably.  “It’s like everything is suddenly so important and I don’t know how to prioritize anything anymore.  I’m seizing up.  It’s totally overwhelming.  Before all of this happened it seemed as if there was time for everything.  If it didn’t get done today, it could always wait until tomorrow.  Everything could wait because there was plenty of time.  It was that beautiful illusion of immortality, security, and control that I can never seem to recapture, no matter how hard I try.  I feel like I’m racing against the clock all the time now… chasing ghosts.”
“With everything you’ve been through I can understand why.  You’ve put up with way more than I ever did.  But you can’t live like you’re always running out of time, or you’ll never be here.  You’ll always be stuck in the past or future trying to deal with the present.  That alone is going to sap all of your emotional energy.  Just accept that this physical stuff is wearing you out.  Now that you’re on disability again it will give you time to heal and get your head screwed on straight.  And being away from work will make it easier for you to focus on yourself and go at your own speed for a while.”

We drank tea and talked for a long time.  And then they both showed me the office and gave me two giant hugs.  And I was once again on my way.  Somehow a circle closed that day.  I was reminded of how judgmental and presumptuous we often are – how we so rarely take the time to look carefully enough to see and understand what’s happening on the inside.  I did it with Erin for the longest time… my friends do it with me now… everybody zooming along at speeds so fast that they can only catch a glimmer of what’s really happening around them… and even within themselves, for that matter.  Throughout this whole ordeal I’ve technically looked healthier than many of the people I work with.  And so did Erin.  But that doesn’t mean anything, as my medical history alone corroborates.  If what I’ve said here sheds even a tiny sliver of light on the psychological struggles your loved ones might be involved in, then it’s done its job.  Because until we experience things for ourselves, we’ve got no idea what’s really going on.  I think if we all lived long enough, we’d be able to experience enough to finally, truly relate to one another at some intimate level.  But that’s just not going to happen.  There are so many things that so many people will never have the opportunity to experience and relate with.  So the least we can do as caregivers, family members, and friends is to set aside assumptions and judgment.  It’s good advice when engaging cancer patients and survivors, and just generally good advice for living.  And in this regard I need to thank my wife and family the most for their patience over the last four years.  Because they are a constant reminder to me of what it means to be open-minded and compassionate in the face of the unknown.


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