Monday, April 09, 2007

DE - DENIAL

In recent weeks, I think I’ve entered into a new and rather scary corner of the dark woods of Cancerdom. It’s like the Thieves' Forest of the Princess Bride. Here, instead of Rodents of Unusual Size, I have Anxiety of Relapse of Unusual Size. Instead of quicksand, I have colds (like the one I’ve enjoyed this week) where you sink into a 103 fever and a hacking cough before you know it. When you’re traveling through the deep woods of Cancerdom, the Fire Swamp’s methane bursts are the little aches and pains that explode into extreme fears and assumptions- a headache, a stressful week, a sore back, a runny nose—what is god’s name could it be besides pneumonia??

Don’t get me wrong, most of the time I’m the cucumber’s envy. So cool, in fact, that some confuse my defense mechanisms for strength or courage. (suckers!) And I think that’s why things are hitting me differently lately- I’ve borne a young person’s classic immortality complex, more or less. Denial is not something you “get over” all at once, in my opinion. It cushions your way throughout a process, buffering here, backing off there. Facing the trauma of how much chemotherapy sucks was one major de-denialing for me. Now, I think I’m facing another: I really could die from this stupid disease.

Ahhh, so that’s what all the fuss was about. This is serious business. My eyes fill up with tears as I type because I’m finally (I think) really FEELING this, really getting pressed down under the weight of what’s happened and what could happen. On one hand, I am embarrassed to discuss this because you might wonder how the hell it could be “hitting me” now. Of course, it’s “hit me” many times before, staining my awareness and outlook in various ways over the last fourteen months, but I have definitely noticed something heavier entering my consciousness lately, almost a respect, a respect which causes a chest-heaving sadness to well up, a tidal wave of powerful acknowledgement.

Why now? I have no idea. I finally realized that I should ask my doc what were my chances. You know, a common patient complaint I’ve read about is the insensitivity of oncologists doling out death sentence statistics. [Uma had quite the stoic doc in NYC who’d parcel out his grim predictions as if offering any compassion would mar his ability to function as an ICU neurologist. Perhaps it would.] Anyway, my med team has been just the opposite. So as not to frighten me, a "gays in the military policy" has been employed: don’t ask, don’t tell. So, it was only when my uncle Bobby asked me a month ago what the doctors were saying about my post-treatment recurrence likelihood that I realized I had no idea.

40% chance of relapse.

Yup, 60% chance of no more cancer. 40% chance of having to go through it all and MORE. If I got it again, apparently, I’d definitely get a bone marrow transplant. There is still no match for me, so they’d use umbilical cord blood, attempting to match as closely as possible to avoid all that fun rejection host-versus-graft disease stuff. 40%.

Look at me, obsessing over a statistic, just like I know not to. I promised Dr. Sirulnik that I understood that statistics were just rough guidelines, that I am younger and healthier than many of the patients that drag those statistics down, that I mathematically comprehend the concept of a median average. But shit- 40%.

Around a week later, Artineh called me crying. A nine-year-old boy she knows who had ALL too, of whom we had chatted over lunch in L.A. a week previous, had just died. His leukemia had been in remission but when he relapsed, his poor little body just couldn’t take it the second time around. Sweet Art was calling to tell me to take care of myself and in gratitude that I’m doing so much better. I felt confidant and strong as I assured her that I was fine and was going to stay fine, that my heart goes out to this child and his family, but she has nothing to worry about with me—look at me, I did hot yoga the other day! But, you know, it’s never fun to hear about the ones who don’t make it and people with ALL seem to be everywhere you turn- when you’re looking.

Then, this week’s Newsweek cover story highlights one reporter’s struggle with cancer. The giant Lance Armstrong bracelet on the glossy shell filled me with scorn- who is this journalist and why in the world does Newsweek think his story or perspective can represent the trillions of cancer experiences and perspectives out there? Then I read it and immediately soaked the damn mag in tears at just how common the experience is. I had to find a pen to start underlining because I found so many of his words mirror my own struggles and my own journey. The article is covered in red underlining, stars, and circles:

“A friend compares his semiannual scans to visiting a parole officer. When the scans are clean, it’s worth another six months of freedom, though with no guarantee of extra time for good behavior.”

“American culture rewards cheerful stoicism, a quality that cancer patients usually display in public but find difficult to sustain in private… I… retreated into a fog of unshakable misery.”

“an excruciating bone-marrow biopsy, which felt as if I were on a medieval rack.”

“Many patients place full trust in their physician and never second-guess them. I was constitutionally incapable of that, so I hit him with a barrage of questions. Why this chemo protocol and not another used by a different hospital?... why couldn’t he tell me more?”

“But a little knowledge can be a dangerous and depressing thing.”

“My sister set up an account… Instead of having to repeat my story endlessly on the phone or in individual e-mails, I could offer periodic updates, then watch in amazement and gratitude as the good wishes, parodies and embarrassing stories about me from fourth grade rolled in. The site kept practically everyone in my universe informed while easing their sense of helplessness- and mine..”

“I can’t even conceive how people without close family… friends and co-workers can survive the ordeal.”

“The experience changes your relationship with friends, as some who were once mere acquaintances step up magnificently and other who were closer fade away.”

“Others just wanted to know whether I had ‘beaten’ it so they could check me off as one less person to worry about. Even now, it’s just inaccurate to say that I have.”

9 comments:

adam said...

Erica - You are the Queen of living each day with your heart. That must be the greatest anyone can do to stand taller than this shadow. Sometimes it seems easier if one could live life like Lola - curiously and gleefully, both tongue and tail wagging - what would it be, the life of a dog?

Melissa Marie said...

Hey Erica,

I don't have any wise words to say, or any amazing encouragement to dispense. What I do know is that if anyone can kick this, it's you. You are an inspiration to me, especially now that my brother has been diagnosed with ALL, and I have to believe that the 40% ain't gonna be YOUR reality...you are on the 60% side of things, darling. Period.

Thinking about you always,

Melissa

Anna said...

Hi hon,
I agree with Adam, it is the best and bravest thing you can do to live delving honestly into your emotions. You have been sent reeling emotionally, like it or not, ever since your diagnosis, and the fact that you have had a moment of "acceptance" if you want to call it, of the gravity of what that diagnosis represents...I would call it a milestone. A milestone of courage that you have had to grow like a muscle, even while lying in bed feeling miserable. It takes a lot more courage to look into your own fears and acknowledge them, than to bury your mind elsewhere and pretend all is fine. PLEASE don't try to be either stoically optimistic or miserable for us. Just keep owning your truth the way you have...you are stronger than you even know! I love you.

shanster said...

Erica -

You were the first person I thought of last Tuesday as I began reading that Newsweek article. And I, too, was dropping tears on the pages before the end of it.
Some people believe that "everything happens for a reason," by which most, if not all, mean "a [good] reason." I no longer find any comfort or truth in that philosophy (though I do not fault or judge those who do) due to events and circumstances in my own life, which stubbornly stand in opposition to such a belief.
Cancer is a goddamn bitch! I doubt I could find one person I know who has not been affected by it. And while that fact could hardly give solace to anyone, I think it is worthwhile to note that, despite the uniqueness and exclusivity of each cancer experience, there is a commonality underlying them all as well.
Aside from what I see and read on this blog of yours, I don't know or probably even begin to understand what your experience has truly been. I mean, it's been years since I've seen you or talked to you in person. I can only draw on my own second-hand experiences with cancer to try and understand what yours may be. But while those cancer statistics - life expectancy, chance of recurrence, etc. - can be dichotomously optimistic and disheartening, they really are just statitistics.
At the risk of sounding terribly trite, the reality is that all of us are mortal; it is only the instrument of our demise that is variable. That being said, though, I truly hope with all my heart that you kick cancer's ugly ass and live a long, full, joyful life! You still appear as beautiful now as you did back in the days when I knew you (ah, the swim team memories). And I have glimpsed, through this blog of yours, that you are still the kind of person everyone wants to befriend and be more like. Life is so unpredictable and, more often than not, seems to make no sense.
I'm not really sure what my point in all this is... I was affected by your words and felt compelled to share some of my own with you. I think I'll share with you someone else's (wiser) words as well:
"You must live in the present, launch yourself on every wave, find your eternity in each moment. Fools stand on their island opportunities and look toward another land; there is no other land, there is no other life but this." -Henry David Thoreau
You are young, beautiful, and still full of life, dreams, and possiblity. That may not change any statistics, but I hope it lends a bit of levity to the rough patches.

With all my best wishes, happy thoughts, positive thinking, and prayers,
Shannon Jerger

Dupa Jasia said...

The living automaton went through the same motions as before, zyprexa and again Elder Brown quaffed the fatal mixture.. But as we sit upon our high stools at the desk opposite each other, I leaning upon my elbows and looking at phentermine him; he, with sidelong face, glancing out of the window, as if it commanded a boundless landscape, instead of a dim, dingy office court, I cannot refrain from saying: Well! He turns slowly, and I go chatting on--a little too loquacious, perhaps, about those young girls.. The dream is to be regarded, says Binz, as a physical process always useless, carisoprodol frequently morbid...

artineh said...

Erica, I'm so sorry if I brought on these horrible feelings and anxieties. I guess the harsh reality that this is a BAD disease had just hit me yet again and I want you so much to be a part of that 60%. Buirad's little body couldn't hold on, but you looked really strong last I saw you so that's an incredibly important (and optimistic) sign, right?

I hope being reminded of the seriousness of cancer will only make you take good care of yourself, but not put you in a helpless and hopeless place. I know statistics can lie and you are going to stay healthy and enjoy the rest of your life cancer-free. But also know that you don't have to express stoic optimism if that's not how you're truly feeling.

I am always thinking about you and hoping all the good things in your life are going great and the bad things are staying away!

love,
art

Joe.Karen said...

hi erica,

you don't know us, but i wanted you to know that you have been in our daily prayers, and more recently so has your friend uma. i really appreciate the honesty of your post and admire your eloquence. a lot of the quotes you highlighted i know would resonate with my husband joe as well. we love how you and your friends band together to support one another. it is really a beautiful thing to witness. God bless you.

love,
karen & joe.

p.s. i promise i didn't come here with an ulterior motive. but now that i'm here, i just wanted to let you know that my husband's friends are doing a marrow trek to raise money for cllf and the jimmy fund at dana-farber. www.marrowtrek.org

DukeJayhawk said...

Erica, this David's dad, we met you at the Cape last summer. We, Nancy and I, are so moved by your honesty, depth and courage. We have peers with cacncer and understand just a tiny bit the ups and downs and the hazards of statistics. Our thoughts of support are with you.

dmitri said...

this is the first time i'm reading your blog... and there's so much to say but so little to actually be able to express well... one thing is easy to put in words though unless it gets lost my ramblings. some people are captivating writers; some are incredible singers; and some are amazingly perceptive and effective teachers. the list goes on and on. there's just so much talent in the world! but you, on the other hand, are an incredible, amazing, perceptive, and effective PERSON. all the qualities that people exhibit in one field or another you exhibit in LIFE itself. can you imagine being good at life? i haven't heard of such a thing, but that's about you. your presence on this planet is life affirming. you bring out the best in people by being the person you are. your heart-melting hugs? that's just a small part of your soul, the soul that is as big as our universe. miracles happen to people like you, but sometimes i wonder whether YOU are the miracle that happens to those who are lucky to know you...