Sunday, November 1, 2009

The strangeness that is

A friend of mine from college was just recently diagnosed with stage IV cancer.  If you're anything like me, you think  of stage IV as the stage of cancer diagnosis that is given after fighting off stage I, stage II and stage III cancer.  Sadly, this is not the case.  My friend, Jason, was just having some bleeding with bowel movements for a few days and saw his doctor, who scheduled him to get in with a GI specialist.  He never made it to the specialist, because within a couple more days, the bleeding wouldn't stop.  He ended up in the ER for that, and in less than a week, his life was forever changed by a stage IV diagnosis (rectal cancer, with mets to the liver).
Jason was a couple years ahead of me at college, and light-years ahead of me when it came to talent and understanding of the theater.  He reached out to me, though, and took the time to guide me through the audition process after he watched me soar through an initial audition then crash and burn on my first call-back.  We only had two classes together - advanced interpersonal communication, where we actually became friends and a communications arts seminar, during which we argued vehemently over whether Merchant Ivory's Howard's End was a true cinematic classic (his side) or a sick semi-freudian indulgence with endlessly neverending "waving flowers" scenes to make up for it's lack of substance (my position; I'll have to hunt down the paper - I really did manage to say it much better than that!).  The critics all seem to agree with him.  14 years later, I still hate it.
One of my sharpest memories of Jason is from our advanced interpersonal communications class.  There were 14 of us in that class - a "J-term" class that was several hours a day, every day, for a month.  The whole point of the class was to form close interpersonal relationships with our classmates, so we could learn and put into practice the concepts of true communication.  I vividly remember sharing one day that I was struggling personally because I'd developed romantic feelings for a close friend.  At some point in the conversation, Jason actually asked "Is it me?" (it wasn't) and I was so surprised that he'd asked me, I laughed nervously and said "of course not" to which he replied "oh...GOOOD!"  To be honest, even though he wasn't the object of my affections (and I'm now married to the man who was), I was a little hurt at his response and I didn't hide my hurt very well at all.  That day after class he caught up with me as I was leaving and asked to explain.  I don't remember exactly what he said, but in essence, he'd had another female friend who'd developed romantic feelings toward him and it had strained their friendship to the breaking point.  He said (I'm paraphrasing) "I don't know what the future has in store for any of us, but I'm not ready for a dating relationship with anyone right now.  I was relieved that it wasn't me because I'd hate to lose you as a friend."
While we aren't the closest of friends, we do still keep in touch, which is more than I can say for 99% of my other college friends.  Over the years, we've both married, moved, had children and gone in very different directions in life.  But we've stayed in touch, sharing a "catch-up" e-mail every year or two.  We've continued to "share our lives" in the open and honest way that we learned in that advanced interpersonal communications class.

Now, the funny thing about this post is that I shared all that about Jason, but this really isn't about Jason.  It's about me.  Jason and I are friends on Facebook, and when he first learned about his illness, he set up one of those "caring pages" websites that allow friends and family to stay updated on what's going on through someone's very serious illness.  I get e-mail updates every time his page is updated, and I've been following his situation closely, praying for him as often as I think of him.
The emotions surrounding his news have been many.  I'm shocked that this energetic, healthy young guy can suddenly be so dangerously sick.  I'm angry that this insidious, deadly disease has attacked someone I care about...again.  I'm worried about the ordeal he has ahead of him to fight this thing off.  I'm concerned for his wife and young daughter; indeed, for his whole family as they try to walk with him through this.  I'm scared that if this can hit him, what could hit my husband?  I'm thankful that there's a huge following of people who know and love Jason (and even some who don't know him) who are prayer warriors on his behalf.  I'm encouraged, that the God Who parted the Red Sea and raised people from the dead, Who made the blind see and the lame walk, is in control of this situation, no matter what the outcome.  I'm hopeful that the huge advances in medical science allow the words stage IV to NOT be a death sentence any more.

And in the deepest, darkest recesses of my heart...I'm jealous.  I can't believe I actually let those words out, because what kind of IDIOT is jealous of a stage IV cancer diagnosis?  So before you believe that I'm completely off my rocker, allow me a short explanation.

I've followed Jason's daily struggles since the day he was diagnosed.  He's being readied for chemo and meeting with the surgeons that will work on things once the tumors shrink.  In the meantime, he's dealing with pain and elimination issues.  Nothing like a large tumor in your rectum to block things from going out normally.  But with each problem that crops up for Jason, a plan is put in place.  "Here is what we're dealing with, and this is how we're going to deal with it."

Then there's me: I've been in pain for over 2 years now.  Sometimes it's just a little "nagging frustration" in my day, slowing me down a little and making normal activity just a little difficult.  Other times, it is "dropped to the floor, can't contain the scream" pain - the kind that I'm not sure I'm going to live through when it hits.  While I have thankfully few days at the bad end of that spectrum, I sadly have very few days at the good end either.  Most days it is debilitating enough to severely curtail most, if not all, normal activity.  It's been over a year since I've been able to get through 24 hours without prescription pain medication.
For a completely unfair, and somewhat inhumane, bonus, for the past 2 months I've also been dealing with nearly-constant constipation, with all the pain and bloating that accompanies it.  Despite asking for help from four different doctors, my pleas have been met with "take more fiber" "take less fiber" "it's probably related to your fiber intake, more or less" and "hmmm, I don't know what to tell you."  None of the suggestions have helped, and none of the doctors have any interest in helping further or finding the cause.

With my "normal" pain (how awful is it that I can even refer to it with the word normal???), I have gotten to the point where I can cope with it, I can take it.  I can get through each and every day, no matter the severity.  Even when I'm doubled over and biting my arm so that I don't scream loud enough to scare the kids, I know that eventually the pain will subside enough that I can get up and continue on with whatever I was doing.  I don't even beg my husband to take me to the ER for the real pain relief anymore (partially because I tell myself over and over and over that I WILL GET THROUGH THIS, but partially because when I'm there I get treated like a junkie.) 
But the pain is ALL I have strength for.  These days, even a stuffy nose sends me into a tailspin.  Any discomfort on top of this already-constant pain pushes me over the edge of tolerance into a nightmarish existence, where one part of me is not sure whether I can survive this much pain and the other part is not sure I even want to.

To that, add 2 long months of unending cramping, bloating and general stomach discomfort and then top it with my struggle to get four kids through a bout with H1N1, only to end up with the bug hitting me.  So yeah...I'm jealous.

I'm jealous that Jason's problems have a name, a plan...a REALITY.  The cause of my pain is, as of yet medically undiagnosed.  For some doctors, I am a head case in need of psychological help.  For other doctors, I am a one-possibility test case that gets booted out the door the moment the first set of test results come back normal.  For a minority few, I am a rarity, a problem to be solved.  But we're beyond a quick diagnosis and treatment plan, and into the "we could try this" zone, where every treatment possibility is a months-long experiment.  And for some reason none of these doctors has ever seemed ashamed to say "You've been in pain two years, so what's another couple of months if this works?"  They never address the fact that it's been two years of what DOESN'T work.  I want the business end of a definitive plan - something that says "This is what is wrong and this is how we fix it."

I'm jealous that Jason's diagnosis validates his experience.  When my tests come back negative and the surgeons shake their heads and shrug with bewilderment, it seems easy for the people who are supposed to be there for me, to support me, to shrug my pain off as inconsequential.
"If they don't know what it is, it can't be that bad."
No one questions what a stage IV rectal tumor must feel like, or hesitates dubiously if you claim that you have to put your life on hold for stage IV cancer.  They understand, even though they've probably never experienced it.  When the diagnosis is "unspecific pain" and all the major problems are ruled out, I become weak.  In the eyes of my friends, my family...even myself sometimes...I am simply a wimpy, whiny, insipid weakling who lets "a little pain" slow me down.

I'm not jealous of the diagnosis; I'm jealous of the acknowledgement, the response, and the support.

April 26, 2010: I wrote this back in November, 2009.  I hesitated to post it, feeling truly self-centered and selfish to even be thinking these thoughts.  Jason died in January 2010 after his brief, and very brave, fight with cancer.  I've gone back and forth several times about posting this, but tonight I realized that Jason would say "go for it."  After all, we spent a whole class learning to be honest. 

Wednesday, September 9, 2009


Welcome to my corner of the world.  My goal is to share my own discoveries as I try to navigate life.  Generally, the ideas I have about the perfect thing to write about come to me when I'm in the shower at 3am trying to warm up or when I'm half-way across town in rush-hour traffic.  Neither of those tend to be ideal times to type out my thoughts, so bear with me as I try to balance timing with authenticity and inspiration.  I believe that there are quite a few things that God has put on my heart to share, so bear with me as I make an attempt to get my fingers and my brain to work at the same time.