Monday, November 9, 2009

Dark Victory

Okay **sigh** this week I will start to tell 'the story' a bit. The cancer story. When I first started blogging I didn't want to -- I didn't want this to be a disability/illness type blog -- then I didn't feel like it -- now I think I should, a bit, especially if it can help anyone else....I refuse to let chronic illness define who I am, but it does necessarily play a huge part of my life (damn it all), so it does refine my life to a point....

So 'to start at the very beginning...' (do you hear the strains of a Julie Andrews melody in your head welling up now?)

This is an account of how I diagnosed myself with a brain tumor way back in 1984. Some of this is published in an essay in the summer issue of Survivor's Review.It wasn't until a few years after that I learned I in fact, have a rare cancer. Ignorance in that case, was bliss....

After college, I headed out west and had what I basically think of as my 'gap' year -- I wish someone had told me one is supposed to do this before college; it would have made so much more sense. I would've settled down and gotten better grades. Any hoo, after my two-year jaunt spent basically playing, I decided I'd better actually do something before future employers looked at my resume and chortled. I first went to NYC, but coming from AR and a tiny ski resort in UT, it was not for me. My college boyfriend was working for one of our Senators in DC, so I took the train there, got off, looked around at all the green space and low buildings and (after NYC) noticed a mellow vibe, and thought, now this, I can do.

Because of my meager writing experiences at University and journalism background, I was hired to develop a new magazine for architects along with just two other editors, one of which left after the first issue. So there we were, two woman, one still wet behind the ears (guess who), in a field dominated by men, putting out a male-oriented magazine, Architectural Technology. K. and I were basically in the trenches together. God was it fun. The only sour note was that increasingly over the past 15 months I had started to feel -- weird -- one day I'd be sick to my stomach, the next fine. My fellow workers in the building didn't know me -- when I moved to DC I only knew my boyfriend, so I suspected (and found out for sure later) they thought I was a hypochondriac. Thank god K. knew my work ethic (more importantly, my type-A personality), and she believed with me something was amiss. She was always supportive. Finally I redoubled my efforts to find out what was making me feel so lousy and bone-tired. For three months I went to specialist after specialist. I was hospitalized for shock and let go one night -- they didn't even take tests! I strongly suspected it was a brain tumor when certain things began to go wonky I considered neuro-related......

I’m puking into a white Dixie cup -- the first thing I grabbed when my stomach began to lurch again. The doctor winces in distaste and informs me he can’t find anything wrong:
“Seventy percent of my female patients are psychosomatic,” he tells me.
As if it were perfectly normal for a 24-year-old to be unable to stop retching into a specimen cup in his office.
Two nights ago I was hospitalized for vomiting so much I went into shock, but after being stabilized at emergency, was released. Now I’m back to pursue more answers. I’m really beginning to dislike this doctor, with his closed, smug face, and air of disdain. He had been highly recommended. But I fear his fancy office on Foxhall Road in the swank area of Palisades in D.C., was better suited for people with run-of-the-mill issues. Whatever my problems are, they clearly aren’t easily diagnosable.
We’ve run through various specialists and tests, mostly for stomach disorders.
“I need a CT scan*. I have a brain tumor,” I mumbled, my face close to the Dixie cup.
“What makes you think you have a brain tumor?”
I repeated again what I’ve been reciting at every appointment:
“It’s obviously neurological. I have constant headaches. I’m losing my balance -- falling if I lean over, my handwriting is going; I’m having trouble walking…”
He cut me off:
“You don’t have a brain tumor. Will you go see a psychiatrist?”
“If I do, will you give me a CT scan?”
The session with the shrink was uneventful. As he watched me leave, weaving along the long mirrored hallway towards the front door, he called out, “Are you aware you’re walking sideways?”
I turned back towards him, “Oh, yeah, I have for weeks now.”

When I reached the house, I called my boss and told her I’d be taking a leave of absence until I could find out what was wrong. No doubt tired of seeing me stumble into the office every day wan, pale, and sweating, needing to rest in the ladies’ lounge for most of the day, she readily agreed. My usual routine was to drag myself to the Metro and then to work, drag myself home on the same train – walking many long city blocks each way – and then collapse into bed or onto the nearest couch or chair, where I would fall into a deep, dreamless sleep until waking to what felt like struggling through fathomless dark waters with yards of tightly wrapped cheesecloth around my torso.

My headaches had become dull and constant, so numbing that when anyone talked to me anymore I struggled to understand them, as my thinking grew fuzzier. At times my eyeballs seemed to rattle back and forth in their sockets and I felt a dizziness I could only describe as that of a cartoon character – remember how Sylvester the cat’s eyes and face seemed to spin uncontrollably after Tweetie Bird pounded him on the head with a mallet? This afternoon, however, something made me flop onto the couch and turn on the TV. Dark Victory with Bette Davis was on. I became engrossed in the story. Well, Damn! She had a brain tumor, and I had all the classic symptoms that were mentioned…without waiting to see how the movie turned out, I turned off the set and called for a taxi.

Noting my jogging suit, the driver asked if I’d be running through Rock Creek Park after I gave him general directions.
“No, I’m going to the emergency room at Georgetown Hospital. I have a brain tumor.”
He didn’t speak for the rest of the drive, but did wish me ‘good luck,’ when I climbed out of the cab.
“What’s wrong with you?” said the nurse at reception. When I told her, she looked at me like I was either prescient, or would shortly be escorted to the psych ward.
An intern came down and looked into my eyes with a flashlight thingy.
I finally got my CT scan.
As I was lying on a hospital bed several hours later, the intern came in and grabbed my hand.
“You’re right; you have a brain tumor.”
I’d have an operation on Monday – this was Friday – and the chief of neurology would be performing it himself, he said. I would be in good hands. They would admit me right away and keep me over the weekend to stabilize me.

The news was vindication for the past 18 months I’d spent trying to convince different specialists I was ill; coworkers who mumbled under their breath that perhaps I was a hypochondriac; a boyfriend who said that living with me was “like living with an 80-year old;” and doctors who said “when they see hoof prints, they think of horses, not zebras.”
I was relieved. I had secretly worried I had leukemia, which had killed my paternal grandfather as a young adult. I didn’t consider this brain tumor life threatening. They’d take it out and I’d be okay. I didn’t understand why my boyfriend broke down and started to cry, or why he wanted to call my parents.
“Let’s wait and tell them after the operation, when I’m okay.”
He thought this an absurd idea, and called them himself.

Horrified, they flew up the next day. My equal parts naiveté and strength served me well. I sailed through the operation. Because I couldn’t be admitted without listing a primary doctor, I had put down the absolutely ineffectual doctor. So every day for four days after the surgery, he popped his head through the door of my room, calling out “How ya doing today? Feeling better?” I’d turn my head to the wall and ignore him. I was gratified to see my surgeon turn on his heel and brush his inquiries off, pushing past him as if avoiding a pesky panhandler.

Later I got a bill in the mail for $400 – he had charged $100 for every time he stuck his head in the room for less than a minute. I immediately called his office and said while I should report him for medical malpractice, I was tired and needed to concentrate on my recovery, and if I never heard from him again I wouldn’t call the AMA. In retrospect I should have, though, as I have no doubt he’s busily misdiagnosing people to this day.

It was nine years before I had the symptoms of another brain tumor. This time, when the neurologist in the new city where I was living said he’d “stake his medical profession on the fact I didn’t have another brain tumor,” I just looked at him like I couldn’t believe anyone could be that obtuse. And told him to give me an MRI that afternoon.

On that fateful day 24 years ago, I learned to take my intuition for granted and to listen to my inner voice. That I was the only one who knew what was ‘normal’ for me better than anyone else. I wish I could say that from that day on I have always acted on this knowledge. Unfortunately, it has taken a few more medical crises before I finally learned the hard way to master the art of taking myself seriously.

After a half-dozen incidents where not following through on my intuition has resulted in serious medical consequences, today if I meet a medical professional who dismisses me in any way, I quickly leave and find another who will work as a member of my medical team. When your life is on the line, you can’t afford not to be vigilant and proactive. I’ve been walking the journey of a survivor of a rare cancer ever since – having finally been diagnosed with von Hippel-Lindau disease, and having undergone 10 of the most difficult surgeries anyone could undertake. But the day I trusted my instincts and resourcefulness, persevering to save myself, will forever stand out.

*before the day of MRIs. In fact, I was in the first MRIs developed. And I made the AMA for being the first person whose spinal fluids were tracked down the chord. (That was another awful day. They said the test would be two hours. After four, they kept saying 'Just a little longer...' I finally started yelling and moving around so they had to let me go. If they'd have been straight with me, I might have held out longer, but four hours is an awfully long time to spend in a dark tube....) I get them so often now, I just go to sleep and imagine the noise as the sound of Native American drumming....


Jayne Martin said...

Holy crap, you've been through a lot. Thanks you for so eloquently writing about it. - Jayne

Deborah said...

WOW, are you OK now? That is unbelievable. Thank you for sharing this story with us. Deborah

Eva Gallant said...

Wow, what a story! Please go on.

strokeofliving said...

Well Lovely Lady, this was brilliantly written and *kind of* encourages me to tell my story verbatim the way it happened that fateful August night back in 2006. I actually hate recalling my "stroke story details" but now I can do it tear free. One day maybe I'll be just as brave as you. I tried to encapsulate as much as I cared to share in my profile. But people still have questions.

You were brave to share your story and yes it may just be the catalyst for someone's own a-ha moment of self diagnosis. So bravo. Beginning to recounting this history may not have been easy for you but you did it! Woo Hoo.

Clare said...

Thank you for sharing your story. You are a brave woman.

From a fellow cancer survivor.


PaperbackWriter said...

AMEN sista! I have never let a doc tell me otherwise about what should be normal for me, it has more than a few times kept me from being more ill than I ever had to be.
Thankfully I have only ever had a couple of those 'inept' caretakers of my health. I live with a couple skin conditions and a neurological disorder and will never let anyone tell me how I am when I'm not.

Same goes for dealing with my children's health and I try to do it for hubby too, though its hard when all you can do is tell the grown child to speak up for himself.

plainolebob said...

Amy, you are a lovely and courageous women, I am so proud to have met you.
I hate those pompus doctors that think they know our bodies and reactions better then us, you did the smart thing.
I lived two years with a 98% blockage from my accident, it took a heart attack to finally get someone to listen to me.

LucyCooper said...

Amazing. I am so glad we found each other. Fellow Arkansans who refuse to ever let a doctor make them feel stupid or backed down. Yours is a courageous story and I'm so glad you decided to tell it. I look forward to seeing you in my reader!

Anonymous said...

I hope you are doing OK now. I have had some bad experiences with Doctors too.

kys said...

Some doctors can really be idiots, can't they?
Thank you so much for sharing your story with us. You have been through so much.

e said...

That is an incredible story...

I too have had some run ins with docs who were wrong. I look forward to hearing more of your story. Thanks.

Leslie said...

It is a nightmare that we have to take our medical care so tightly in hand, thanks for sharing this. Take care of you!

Anonymous said...

I don't really know what to say that would be appropriate, but I will say that I applaud your trust in your instincts and your insistence on getting the help you believed you needed and that although it must have been hell to live through all that trauma, you've succeeded and you're still here and doing well. I get a bit down with my problems sometimes but hell, I never had to deal with YOURS. So now I feel kind of stupid because mine are nothing compared to that. May you continue to be well!