Tuesday, August 14, 2012

The Chemo Room: What's Going On With THAT?

Here's something I've been wondering about lately ...

Why are cancer patients forced to get their treatment in a crowded room?  I don't know of any other diagnosis that results in patients being forced to sit in a room together while each of them, one by one, gets stuck with a needle and then filled with toxins, all while they sit there in a circle, like they are hanging out around a campfire getting ready to sing Kumbaya and roast marshmallows.

Is it an attempt to mask the fact that each person is really fighting alone, no matter how much we love them and no matter how much we support them and want (need) them to get better, no matter how much we wish we could take away their pain or how hard we would fight to take their place?  

Is it supposed to be like a Cancer Club, with their cushy recliners and (if you're really "lucky,") flat screen TV's?  Because it's really not. Or at least it wasn't when I was in there with my dad.  For us, it was an environment of extreme stress, pain, and fear, tempered with just a little bit of hope and the belief that what was happening would be worth it.  But it didn't take having other Cancer patients in the room with us for that to be true. In the first chemo room we were in, the one at Duke, there were curtains between the recliners.  (Prior to then I'd read that only the newbies use them, but I didn't care - I pulled ours closed anyway so Dad would have some semblance of privacy.)  I'd heard that after the first few visits in the Chemo Room most patients prefer to keep the curtains open and chat with each other.  That sounds great.  And maybe for some people it is.  But I didn't see it, and I really can't imagine it seeming like anything other than an invasion privacy.  

For what I think were purely logistical reasons, our second visit to the Chemo Room was far worse than the first one. Neither one, of course, was a walk in the park for Dad, and, as you know if you've read our Behind The Scene Story, neither one ended up being worthwhile.  Both times, though, I remember feeling the breach of confidentiality and the urgent need for privacy and peace and comfort for Dad, all of which were not to be found in that type of a setting for him.

Is it an attempt on the part of the medical staff to keep people from showing their emotions?  We all know that peer pressure can be a very powerful thing.  I know there are lots of times in my life when I was hurt or scared and I wanted to cry but didn't because other people were around.  That just doesn't seem very nice, though, does it - using someone's pride against them, humiliating them into shutting down their fear, their pain, their anxiety, when they're battling for their lives?

Is it a cold hard dose of reality (like HEY YOU!  YOU REALLY DO HAVE REAL CANCER, and soon you'll be pale, bald, and sick-looking just like the other people in here!)?  OR, to shame them into not crying when they have to be stuck for the IV, when the chemo burns their veins, when terror hits them in the gut harder than any boxer ever could.  

I guess the most likely reason, though, and one that's in some way actually even sadder than those reason, is that it's a way to save money.  

Just one more thing about stupid Cancer that I don't understand.

Sunday, August 12, 2012

Anger, Of Course!

Imagine, if you will, that you were just going about your business one day, living your life, and suddenly you became seriously ill or injured.  Now imagine that in the process you became disoriented and started having problems remembering recent events, and then you were told that you wouldn't be able to return to work or do the things in life that you loved doing, maybe for a short period of time, maybe forever.  In fact, you were told that you couldn't have your cell phone or your computer, you were confined to your hospital bed like a prisoner, AND you were in pain that never really let up at all.  

And then: you were told you had a terrible disease, one with a very grim prognosis.

Do you think you might just be more than a little angry in this scenario?

While my dad was sick - from the day he was first admitted to the hospital, through the time of the surgery and the not-so-great stay in rehab, and finally to the time of his hospitalization when he was so weak that he literally couldn't lift his head off the pillow - we only saw a few brief bursts of anger from him.  It's unbelievable, really, given all that was going on with him, the little time he spent expressing this emotion, probably about three hours' worth total over the course of the ten weeks.  

If you know anything about traumatic brain injuries and neuroanatomy, you know that based on the very area of Dad's brain where the tumor was and the multiple traumas that he suffered, coupled with the massive dose of steroids he was on and the utter lack of sleep he got during that time, plus (let's not forget to mention) the (can't think of how else to phrase this that will convey the same meaning) SHITTY HAND he had been dealt in being diagnosed with brain cancer, Anger should have been present every moment of every day for him.  I will venture to speculate, though, that several things played a part in the fact that it wasn't: first and foremost, Dad's perspective, the usual (pre-illness) evenness of his emotions, and his internal happiness meter, which was almost always in the good-to-great range.  Next on the list was probably the fact that during that time one or more close family member was always right with him, which, as comforting as I like the think that was for him, likely resulted in an extreme effort to be positive and to hold it together by HIM so that he wouldn't risk upsetting or disappointing us, in his eyes.  Another factor probably came from Grief; I think lots of time Grief gets a bad wrap, kind of like peer pressure does for kids in many cases.  Sometimes, though, also like peer pressure, Grief can be useful - and for Dad as it was for the rest of my family at the time, the Shock and the Denial it brought about allowed us to Hope and even just to function in what was an almost impossible situation.  For Dad, the understanding of the horror of what was going on that he was able to grasp was likely tempered by the Denial that covered both him and the rest of us. Finally, I think ironically it is possible that the brain injury itself, with the effect it had on his short-term memory, might have allowed Dad to be short-sighted enough regarding his limitations and most especially his prognosis that he was able to dodge much of the Anger that logically should have been there.

The few episodes of Anger that I saw from him during those weeks seemed to stem from frustration, usually aimed himself for not being about to do basic things as effortlessly as he should have been able to, very understandable given the circumstances.  A couple of times, I witnessed him getting angry with another family member, and a few times he snapped at me, mostly from impatience when he was in pain. All were, in the eyes of those of us who were taking care of him, completely justified, and, from my perspective, the only reason they are worth mentioning at all is because it's such a wonder they didn't happen much more often.

One of the biggest bouts of anger he had occurred during a P.T. session on one of the last days he was in rehab.  I had just gotten to the rehab hospital and was rounding the corner in the hallway on my way to the gym, and, when I heard Dad's voice, I stopped short of where he could see me so I could see how he was doing in therapy without distracting him.  As I peeked around the corner, I saw Dad lying on his back on the mat in the Therapy Room, and I heard the Physical Therapist telling him to do ten leg lifts with each leg.  Obviously just wanting to get the whole thing over with, he hurriedly and haphazardly lifted one of his legs a few times and then said he was ready to go back to his room. The P.T. brusquely told him that he wasn't done, to which he responded, "Oh, HELL YES I AM.  A couple of weeks ago, I could run a marathon and not even be tired; I don't want to work on stupid leg raises."  My aunt, who was sitting in on the session, tried to ply him first by playing on his competitive spirit ("Come on, Bill!  Show them what you're made of!" she cheered.) and then, when that didn't work, she tried joking with him ("And a one, and a two, fly like a butterfly, sting like a bee," she chanted, after she'd laid down beside him on the mat and as she enthusiastically did the leg lifts he was supposed to be doing.).  Neither tactic was effective; in fact, he was getting angrier by the minute, and he finally shut things down with a burst of expletives that I won't repeat here.  Suffice to say, he was angry, he'd had all he could take for the day, and he got his point across in the best way he knew how in that moment.

I'm sure it's difficult not to equate sickness and weakness with a feeling of failure.  I can't even start to imagine having to go from doing what Dad was doing to not being able to do what he couldn't, literally overnight.  Thinking about that while he was in the midst of the fight made me realize that beating cancer isn't just about getting rid of those cancer cells.  It's about fighting to stay on top of that win-lose mentality, it's about finding a way to accept just enough and to forge ahead in a quest for just enough, and it's about charging full-speed ahead while somehow at the same time finding a way to stop and smell the roses and to create and hoard those memories along the way.  

From my family's experience when Dad was sick, I became acquainted with the harsh reality of how tough cancer treatment can be on one's body and, just as importantly, on one's spirit.  The very process of having to make what ends up being literally life-or-death decisions based on the Cliff-note version of information given while dealing with the illness,  the loss, and the reality of things is exhausting, to put it mildly.  It feels like it must feel to stand at the bottom of Mt. Everest without any experience and without a trustworthy guide or a map of any sort.

On the day that Dad went to the radiation oncologist for the second time, I had to work and so I didn't go with Mom to take him that day, which ended up being the day that he had to have the face mask made to hold his head in place for the radiation treatments that we thought were coming up.  Afterwards, when I asked him how it went, he told me it was no big deal.  I've since learned, though, that getting the mask made is not no big deal (To read a first-hand account of the process, click  HERE), and I cannot imagine how scary and confusing it must have been for him.  

And that, along with many other things that happened along the way while my dad was sick, makes me feel the burn of the anger that I don't think will ever fade.  

"I know I can't be with you; I do what I have to do.  I have the sense to recognize that I don't know how to let you go."