Getting the diagnosis

The back story…and who am I to fight like this?

       I was an unhappy child; lonely and feeling invisible… typical child of the 50’s, supposed to be seen and not heard and I didn’t feel either.  My earliest memories are self-conscious and full of shame…wanting to hide and shrink into a corner so that no one would find out how bad a girl I was.  Molested by a trusted uncle for as far back as my memory allows, I can look back at 5 year old me and feel compassion and heartbreak for that innocent child.  But at the age of 5 I felt anything but innocent.

       By the time I was in third grade I weighed 100 pounds and kept my skirt closed with a safety pin.  Aware of that pin all day long, I spent my life half-expecting that someone would notice how I was broken, ripped, held together by string…but no one ever did.  
       Raised by a depressed mother who never should have been one, I struggled to just survive day to day.  I remember my mother criticizing me because my aunt had called  15 year old me “phlegmatic” and that embarrassed her.  The world was largely a hostile and dangerous place and somehow I knew that all my energy was just supposed to go into pretending.  When I was just too exhausted to pretend, I just went blank and shut down.  I can’t remember most of my childhood…is it because I did my best to blank out as much as I could…day to day?

       As my weight increased over the years I fulfilled my mother’s prophecy of doom. "You are destined to be fat like me” she’d always say.  “Sorry (she’d chuckle), you got the bad family genes…it’s just a matter of time until you have high blood pressure and diabetes too." And so at age 40, weighing over 350 pounds, came the diagnosis of congestive heart failure. Warned not to take the stairs out of the health center (because I might have a heart attack”), I left with prescriptions for several blood pressure medications and instructions for immediate and severe dietary changes.  Panicked and terrified, I made those changes…for a short while.  And then that familiar and overwhelmingly hopeless feeling resulted in once again abandoning the hard work of making long-lasting change and I escaped into a cocoon of food and depression.  Like a worn groove, I fell into the rut I was used to hiding in.  For years I lived in a state of emotional and physical purgatory…feeling sicker and sicker…feeling tired all the time…and becoming increasingly immobilized.        
       By the age of 45 I got a handicapped sticker for the car so I didn’t have to walk.  Of course I barely drove anywhere anyway.  Usually I’d get dropped at entrances, picked up at exits, and for the most part avoided going anywhere…spent most of my time sitting on the couch.  I missed so many years, so many moments and experiences and the knowledge and pain of that kept me prisoner within my own illness.  The sense of doom increased, the sense of futility was so profound that I literally was waiting to die.  Still I put enormous energy into “looking” to the world like I was happy and fine.  Many people would describe me as funny, creative, the life of the party.  Even as my life force dwindled, I did everything I could to appear “normal."  Why?  I’m still figuring that out.

       My biological age was 50, but I knew that any doctor in the world would “see” me as at least an 80 year old.  Walking down the hall made me get out of breath.  My time was spent in front of the computer, in front of the tv, reading, and mostly eating.  I knew that any chances I’d had in my life were long lost in a past that looked like a metaphorical hoarders scene…dirty, embarrassing, a mess of excess and garbage.  My doctors just kept prescribing more and more medicine for my various aches and pains…and the medicines created an even greater sense of numb fatigue. 

     I thought things couldn’t get worse, but then that mammogram result came back positive.  It looked as though I might have breast cancer, and I was scheduled to go into the hospital.  For several weeks I needed to wait to repeat the mammogram, wait to see a specialist, wait for the biopsy procedure, meet with surgeons etc…and the way I coped with those weeks of hell were food, numb, anticipatory grief, and endless sobbing and wailing for all I had lost and all I would never have.  I would have said that I had no hope before that mammogram result, but when I heard the words “cancer” and flashed on horrifying images of my chemo-treatment filled future, I knew that I’d actually been holding on to some small kernel of stubborn hope.  Because now even that was being trampled and pried from me and I recognized a new capacity for loss and grief.
And this brings me to the day of the biopsy that changed my life forever.

Hitting Bottom and Finding Hope

       I sit in my blue plastic recliner in the curtained off cubicle, in my hospital gown, and all I can do is tell myself over and over again that it will be over soon.  I mentally tick off each minute, repeating in my mind the mantra that in a few hours this terrifying biopsy will be done, I will be heading home and that much closer to knowing if this nightmare is truly over…or if I have cancer.  The stakes are high and I’m all in.

       The books, ipod, magazines, hand held video games, notebooks and pens, and word puzzles all stay neatly packed in the large bag Sharon grips in her hands.  She tries periodically to offer something…but I can’t even accept sympathy.  I can’t speak, I can’t move…I just breathe in and out and tick off the minutes.

       7:23, 7:24, 7:25.  Three minutes closer to this being over.  Three minutes I don’t have to get through any more.  By 1:00 I’ll be in the car on my way home.  Then the curtain opens.  Someone with a wheelchair has come to bring me to part one of the procedure.  I’m trembling with anxiety but relieved that I’m one step closer to the end.  The walls blur as I’m wheeled past.  People avert their eyes and I grip the arms until my fingers go white.  I want reassurance, but there’s nothing anyone can say that really matters anyway.  I arrive at the procedure room where three staff greet me.  One will take the x-rays, one will read the computer screen and place the wire in my breast, while another is standing by to help as needed.
       “Please slip one arm out of your gown."  The absurdity of protecting the modesty of my innocent breast makes this all the more surreal.  It is close to impossible as it slips off my other shoulder, but the nurse repeatedly pushes it back on.  I can’t understand why.  I have no modesty left.  I am not a person anymore.  Just a body.  A body that might have cancer.  A bad body.  A fat body.  A guilty body.  My body has done something wrong and I am being punished.  The doctor takes a magic marker and draws on the bad breast.  I am marked with his initials.  I have no right to compare the feeling to Auschwitz, but I am inexplicably devastated and feel reduced and humiliated; a marked container of spoiled meat.
       They can’t get a clear picture of the bad breast.  My stomach is in the way.  I am too fat.  The third technician is told to push my stomach in while the nurse holds the camera and the doctor stands by the computer.  I try to suck in my offending stomach.  She pushes at my belly and I feel intense shame.  It’s even worse when she apologizes…I am the one who should apologize.  I’m so sorry I’m so fat.  Inside I know the truth.  I am being punished.  I deserve this humiliation because I’ve been bad…I didn’t stick to my diets and I didn’t take care of myself, so this should have been expected.
       The process goes on forever.  Time stops and I am frozen in this hellish moment.  Still I try to be a good girl.  I swallow the screams and hold back the tears and suck in my stomach and finally I’m bandaged and it’s over.  A wire is in my breast.  Somehow that will guide the surgeon later in part 2.  I’m afraid to move or breathe too hard.  What if the wire moves?  Will they biopsy the wrong place?  Will they miss the cancer?  Everything hinges on me and if I mess up and move the wire it will be my fault that they miss the cancer.
       I know the truth.  My time is up and I’m going to die.  I watched my mother die of cancer.  Last month my brother called to tell me that my sister-in-law has breast cancer.  I don’t know how I will get through chemo and radiation.  How will I survive it?  I can barely cope with getting through my days without cancer, so I have to accept that this is the beginning of a new level of suffering and then wait to die a horrible agonizing death.  I try to blank my mind – better to not think than think about what is to come.  I shrink further inside myself.
       I’m wheeled back to the cubicle where Sharon anxiously waits.  She wants to know what happened, how I am…she wants to comfort me but I can’t speak.  I can’t say anything but “don’t talk to me.”  I gingerly sit back down in the blue plastic recliner and watch the clock.  8:03, 8:04, 8:04.  Still 8:04?  How long does a minute take?
       One after the other staff troop in to the cubicle.  Blood pressure, pulse, temperature, consent forms, verifying information.  The minutes continue to crawl by…but as each one passes I try to focus on how it’s getting done.  I’m getting through this nightmare.  It’s been 14 days of anticipating this doomed day…but finally it’s here and it’s going to be all over soon and everything will be behind me.
       Unless I have cancer.  And have to have chemo and radiation.  Then it’s just beginning.  Then it’s going to be even worse.  Oh my god…how do I do this?  How do I get through these next few hours?  I shift slightly in the chair and freeze as I remember the wire.  When are they going to get to the actual biopsy and why am I waiting so long?  8:42…8:43…8:44...
       Another nurse comes in.  She takes my hand and sticks a needle into my finger.  It stings and I try not to flinch.  “No, I haven’t eaten or had anything to drink since midnight”.  She looks at the monitor in disbelief and swings her head to face me.  “Something is wrong” she says.  “Let’s test it again, this can’t be right.”  But she confirms the number.  My blood sugar is 396.  Normal is 100 or less.  Suddenly everything changes and the curtain swings back and forth as a parade of medical staff march in and out of my room.
       “Did you know you had diabetes?” demands one nurse.  I cringe and slowly shake my head no.  I’m asked the question at least a dozen times during the next hour.  They begin to give me shots of insulin and re-test every 20 minutes.  My fingers look polka dotted from the red points of entry.  I have been bad.  I’m fat.  I am to blame.  I have a bad body.  A specialist appears and sits down with a sympathetic but firm expression.  She explains that the only way they can do the biopsy today is if I have general anaesthesia and get admitted to the hospital for at least one night.  She is thin and I am fat.  She is healthy and I am sick.  She is in charge and I have to do what she says.
       I’m not going home by 1:00 today.  I’m not going home today at all.  I am going to be put to sleep and locked in a hospital room.  I’m not going home.  This isn’t ending in a few hours.  This horrible doomsday has actually gotten harder than I even imagined.  I growl and hunch in the corner of the room spitting and hissing at everyone.  Red eyed, feral and howling, I am unreachable, inconsolable and dangerous.
       But all they see is a quiet woman, sitting rigidly in her blue plastic recliner, staring forward blankly and saying “ok, whatever you need to do."  I will follow orders.  What choice do I have?  I have no choices anymore.  I am a powerless victimized child and I shrink further inside myself.  I can only try to breathe and somehow try to focus on the hope that this will end somehow, sometime.
       I sit in the cubicle for over 7 more hours.  One unending minute at a time.  Silently.  Periodically getting injections and blood tests.  Sharon sitting quietly next to me with the long discarded bag of distractions on the floor in the corner.  Finally at 4:52 they come to take me to surgery.  They murmur that I need to relax and just have a peaceful dream…go to a happy place.  As I lay on the operating table with the gas mask over my face, snarling inside, placid outside…I had no idea that my life would never be the same.

Waking up to Diabetes

       I grab wildly at the people next to me, flail around at the air…I need to sit up, I need to move, I need to breathe…I can’t breathe…I can’t move.  I hear faint sounds…I become aware that they are talking to me.  “It’s ok…everything’s ok," I hear them repeating.

       "It’s not okay!” I want to scream…but I can’t get my mouth to form the words.  Finally I find some breath and a whisper explodes from my body, “I need to sit up!”  They help me and I shake my head trying to figure out what’s going on, where I am, what’s happened.  I was gone and now I’m back.  But it wasn’t like anything I’ve ever experienced and it wasn’t like a peaceful dream and about as far from a happy place as I’ve ever been.  I blink furiously and try breathe deep…I am in the hospital.  I had the biopsy.  It’s all over.  But it’s not over yet, I remember.  I get wheeled to my room/prison cell.  My throat hurts.  Why does my throat hurt so much?

       A nurse bustles in the room.  My IV bag is set up, I’m given a small bag of something cold and told to press it against my breast.  “Take this,” the nurse commands.  I obey without understanding.  My throat hurts and I’m so tired.  I feel her pricking my finger, I feel a blood pressure cuff squeezing my arm, but still I drift off into a disturbed sleep, so woozy…so exhausted.

       A knock rouses me a few minutes later.  Someone has arrived to bring me water and some kind of medicine.  It will help me avoid blood clots.  I stare uncomprehending and fuzzy as staff come in over the next few hours needing to poke and prod me in various ways.  Each time I fall back into a drugged sleep only to be roused by their arrival. 

       One of them says it’s past dinner time.  She asks if I want her to find me a sandwich or something because the dining hall is closed.  I nod yes and wonder that I’m being allowed to eat.  Can’t they see that I’m fat?  Didn’t they hear that I have diabetes?  I can’t be given food, I can’t be trusted with food, food is no longer something I can have.  But the sandwich arrives.  It’s dry bread with 2 slices of thin beige meat with a limp piece of tomato and something that passes for lettuce.  It’s accompanied by a package of light mayo and a diet pudding cup.   I look at the food and recognize the message.  This is what I deserve…punishment food.  This is all that I can have from now on.  It makes sense.  I accept the judgement and slowly unwrap the sandwich.  One bite and I can’t swallow any more.  The pudding tastes rancid and inedible.  I leave it and lay back on my pillow.  I haven’t eaten since last night.  Have I suffered enough?  Has it been enough penance?  But I know the answer to the question before it fully forms in my mind.  This is how it’s going to be…for however long I have left.  My life as I knew it is over.

       I fall asleep again and am woken by the sound of a man down the hall moaning.  I lay in the dark room listening to his pain and feel a kinship and revulsion at the same time.  Why won’t someone help him?  Why won’t someone shut him up?  I finally hear soothing voices and the moaning stops.  I turn on the light and look at the clock.  7:48.  Sharon said she’d be back with clothes and supplies around 8.  She’ll be bringing Joshua (our son) so I have to pull myself together.  I try to run my fingers through my hair but one hand is hooked up to the IV and when I move the other I move the bandage on my breast slightly.  I reach up and touch my bad breast.  It’s covered with a thick bandage and I am wrapped in some sort of tight spandex bra that’s keeping it on.  The small cold bag isn’t cold anymore so I put it on the table next to me.  I sip some water.  Why does my throat hurt so much?  I can’t swallow and I sound hoarse when I try to talk.

       After Sharon and Joshua leave I lay back exhausted.  I turn off the light and fall asleep until I am woken by someone taking my vital signs.  More medicine…more needles.  I am learning to just stay half asleep and flail my arm out until someone catches it and does what they need to…inject something, prick a finger…inflate a blood pressure cuff…it all blurs and I sink into sleep over and over again.

       A woman down the hall is screaming in pain; her fear and fury penetrates my foggy sleep.  I lay there listening to her screams, wondering why she is being ignored.  What feels like hours later I hear authoritative voices telling her to stop.

       She is being bad and they’re yelling at her.  I’m not being bad.  I’m not yelling or crying or moaning.  I’m just lying here wondering why my throat hurts so much and if I will ever have the energy to get out of bed and if I’m going to survive this endless night.

       “We’re concerned that you’re not peeing”, a voice says next to me.  I open my eyes and a staff person has an untrasound machine and is pulling up my gown.  I lay passively as she bares my belly.  “We’re worried that your kidneys have shut down."  I try to explain that I didn’t eat for close to 24 hours…but she proceeds.  “Hmmm, no," she says.  “Looks like there’s just no fluid there, so just try to drink more okay?”       

       “Ok." I somehow summon up the energy to think that she’s ridiculous, but again fall into a sleep.  I sleep for minutes at a time without moving.  One hand is attached to the IV so I rest it on a pillow and I try not to have any pressure on my bad breast.  I drift in and out.  Periodically I hear the man down the hall moaning.  Twice more the woman breaks into screams.  It all becomes part of the rhythm of my existence.  Poked, woken, jarred by horrifying demonic sounds, pain, foggy sleep, more tests, minutes ticking by.  5:05…5:11…5:17…5:18…

       And so the night goes.  By 7am more staff arrive and there is a bustling sense of morning that fills the halls.  I am less foggy now.  More awake and aware that I have diabetes.  I might have cancer too…but for sure I have diabetes.  My surgeon shows up and tells me that the procedure went well.  She tells me that if it was cancer it was very small and they probably got it all.  She tries to be reassuring about the breast biopsy but focuses instead on the diabetes.  “You HAVE to take this seriously, diabetes is what will kill you long before breast cancer.  And it’s a horrible way to die…it will take you a piece at a time."

       They don’t want to release me until I can meet with a diabetes educator, but that means two more days in the hospital.  No.  No.  No.  I have to get out…I feel so desperate and frantic that they actually see it and agree to discharge me.  I’m told to go directly to the Center For Excellence In Diabetes down the block and they’ll give me a blood glucose meter and schedule an appointment for me to come back in two days when the educator will be available.  Now I just have to wait for the release paperwork to be signed by my newly assigned endocrinologist.

       While I wait, my breakfast tray appears.  I see scrambled eggs, bacon, a blueberry muffin, orange juice, a package of cereal with milk, and tea with packages of sugar.  I stare at the tray afraid to even touch anything on it.  Food feels like foreign poison and I am terrified that anything that goes in my mouth will send me into that black oblivion.

       A tall, lanky man in a white coat enters my room and introduces himself as my endocrinologist.  He confirms that I have diabetes.  In case I’d missed that fact over the past 24 hours?  He tells me that I need to change everything about my diet and I need to exercise and I need to take insulin and that my life depends on all of these changes.  I don’t need him to scare me straight…fear is all I have right now…I’m full to bursting with it.  Somehow he sees that and makes an offhand comment “it’s possible that if you take the insulin for a month or two and give your pancreas a chance to heal…well, it’s possible that lifestyle changes could actually make it unnecessary to take insulin."

       I grab onto that thought like a life preserver.  I’m lost in a haunted, seemingly never-ending nightmare, but somehow… in the midst of the fog, I see a faint light.  And that tiny, faint, glimmer of light touches something inside of me.  A warrior inside of me that I never knew existed…she takes a shaky breath, then another, then another, then begins to fan the flame, breath into the light, and I can feel the flicker inside me.  I’m not dead yet.

***************

       Out of that endless night in the hospital bed, arose a new person.  Someone determined to change her life.  Something lit inside of me – and I found the warrior I never knew I could be. 
       Since then, I’ve lost 100 pounds,  been able to reduce several of the medications I take, my blood pressure is low enough that I may soon I go off it entirely.  I take less than a third of the insulin originally prescribed, and my readings are always in the normal range.  I go to the gym 5-6 days a week and eat a healthy, balanced and delicious diet.  Nothing is forbidden, but everything is in moderation and planned.   More than a few medical professionals have stared at me with genuine surprise and said some version of “this isn’t usually how this goes…?"
       I wish that I could go back in time and talk to younger me…somehow reach that struggling, unhappy, stuck person…and let her know just how amazing her body is…just how much power she has over her own health…and how much she deserves to be happy and healthy. 
       I can’t do that…but I can summon up every bit of inspiration I can each and every day to continue to fight for the woman I am now.  This blog is about my journey out of that darkest night, about my continued battles for optimum health,  my revelations about medical care or the lack thereof, and in the hopes that I can  reach even one other person who might feel stuck…ashamed…or afraid.  There is nothing to fear…this is the moment that everything can change for you too.