Hepatitis C Treatment: The Big Sleep In The Rabbit Hole

Going through treatment of Hepatitis C, I suspended reality. 

My world became a rabbit hole.  More like a depressed Bugs Bunny than Alice.

The first on-screen appearance of Bugs Bunny, ...
The first on-screen appearance of Bugs Bunny, from an unrestored version of the cartoon. (Photo credit: Wikipedia)

Only my husband Spanky, the psychiatrist and the research nurse could check on me.  But frequently I pulled the hole in on myself and stayed there.  It was kinda weird.   I felt safe from others but not my crazy mind.  I couldn’t close the rabbit hole fast enough to keep out my mind.   Sometimes I felt like I was watching the world through a window but  I couldn’t remember what happened that day.

Memories of coming out of a bar when the sun is still bright, eewww.

Twice stolen from Edvard Munch

Twice stolen from Edvard Munch

malavula.blogspot.com

I used to wonder if other study patients felt the same as me.  I would watch in the waiting room.  But they weren’t giving up their secrets.  Each traveling with his own rabbit hole.

Rabbit Hole Urban Dictionary
Alice in…Metaphor for the conceptual path which is thought to lead to the true nature of reality. Infinitesimally deep and complex, venturing too far down is probably not that great of an idea.
An allusion to Lewis Carroll’s Alice in Wonderland. To go “down the rabbithole” is to enter a period of chaos or confusion.
Or to take acid, Deb
…….
Then the study ended.  As drugs began to leach out of my body, I felt like I took a year-long nap.  Only I wasn’t asleep.  I was waking from a little tiny world.  Like a newly released guest of the penal system or someone from the space station, I heard about stuff while in my pseudo-sleep but hadn’t really grasped it.  Politics, friends, life skills, I had to catch up on it all. This is more difficult than you think, trying to get past all the celebrity crap. Who “gets” celebrity crap?  I don’t but somebody must or it wouldn’t be ubiquitous.
Sometimes I want to crawl back down the rabbit hole.  During those times, I hang out in our guest room, my home during treatment.  It’s comforting in a psychiatric kind of way.  It took months to feel free of that need,  about four half-lives*  When I can’t sleep I still go in there.  It is normal to lie awake all night in the rabbit hole.
 I’m thinking of painting the rabbit hole room lavender (I don’t like lavender) or getting a new bed (I like the existing bed).  Dismantle the tangible rabbit hole.
*A half-life, t1/2, is the time it takes to remove 1/2 of a drug from your system.  To approach 100% drug removal takes about six half-lives.

A biological half-life or elimination half-life is the time it takes for a substance (drug, radioactive nuclide, or other) to lose one-half of its pharmacologic, physiologic, or radiological activity. In a medical context, the half-life may also describe the time that it takes for the concentration in blood plasma of a substance to reach one-half of its steady-state value (the “plasma half-life”)

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Where Is Reset? Life After Hepatitis C Treatment

 After four  years and two rounds of Hepatitis C treatment, how do I reset my life?

In 2009 I enrolled in treatment round #1 for Hepatitis C.  I was a subject in a drug trial.  As it turns out, I received standard of care: Interferon and Ribavirin.  This didn’t wipe out the virus, but did wipe out my career.  Between the emotional, psychological and physical melt down, my performance at work  never recovered.  In fact my performance began to slip a couple of years before that.  Depression coupled with anxiety along with tiredness from hep C, career and  school  left me mildly catatonic.  Oxymoron?

After round one, from which my career never recovered, I retired early.  I was that rare bird, a person with a retirement package, and I wanted to keep it.  This was in 2010-11 when pharmaceutical companies were reducing employee numbers by 30-60 %.  If sales aren’t up, expenses must come down.  Employees are expensive, especially when you think quarter to quarter. Human Resources (Man Power in my early days) would never say it, but a disproportionate number of older/higher paid employee positions went away.  A vague yet popular term was “you are not on board”  meaning you are not 110% aligned with new management thinking. Your resistance to any part of process is slowing us down.  Younger business/science professionals with a great deal of ambition and no scientific historical perspective are cheaper and quick to get “on board“.

I agree, I was not on board.  The new direction was not science. The new direction was “scientific marketing”.  WTF is that?  BTW, I used to love my job, absolutely love it.  I had the good fortune to work with  AZT, the first HIV drug and with Ritonavir the first antiretroviral for HIV.  I saw people begin to live with HIV. Ritonavir is now being studied for hepatitis C. I worked with the first oral anticoagulant that didn’t require blood monitoring ( this drug didn’t make it to launch after millions of dollars in research) and the first proton pump inhibitor for GERD.  I put teams of field scientists together in both Hemostasis and Infection.  I developed their individual and group skills.  I was good at it.  I wasn’t as good at managing up the ladder once science got squeezed by sales.  So why can’t I just get on board elsewhere?  Because I have to live with myself.  Whew, too many I’s in that paragraph.  I am trying to learn to relax and live with the debt bomb that will gobble up my little anti wolf money.

English: AZT (zidovudine), the first medicatio...

English: AZT (zidovudine), the first medication shown to be effective against HIV. From the National Institutes of Health website (http://www.history.nih.gov/NIHInOwnWords/docs/page_05c.html). (Photo credit: Wikipedia)

When I was nine, Dad would drive 70 miles to Indianapolis  at 3 AM and pick up fresh produce, then back to  Al Monger’s fruit market.  I  remembered that name because Dad called my dog a mangy mongrel.  I pictured Al Monger as a hound dog  (Mom lost my dog later while drunk.  I cried about that dog for years).  Dad’s pay in part was produce.  He and I would drive through “rich” neighborhoods in an old pick-up truck and peddle watermelon from the back.  We cut plugs from a melon for house wives.  When one turned up her nose, he would say “That woman doesn’t know what trouble is”  And I thought yeah, be poor like us, then turn up your nose at a watermelon.  At day’s end we took the rest home.  It was July and Mom was pregnant with my brother.  She ate watermelon all night long.  We lived in an apartment upstairs with pink  lace plastic curtains and no screens. I knew we hit a low.  She always looked down on plastic curtains and she even had them tied in a knot.

On really bad broke hang-over days, Dad would get a pint of aluminum paint and a pair of cheap gloves.  He made a handle from a coat hanger and ran it through his belt.  We drove through rich neighborhoods and picked out a rusty TV antenna.  We parked on the curb, not the drive. I sat in the truck looking out the window.  He always had a smoke on him while talking to the homeowner. He told the lady of the house he could save that antenna.  After the first one, he convinced neighbor ladies.  For $5 he climbed the wobbly three-sided antennae and painted  up and down streets.  That night we would be “rich” and he would look like the Tin Man from the shiny paint.  One time he said “I sure am thirsty, you want a root beer?”  Are you kidding, heck yeah.  We got ice-cold mugs at the A&W.  I had to gulp it down.

Laughing, he said  he had places to go and people to see.  We’d stop by the store for bread, bologna, milk and Camels.  Maybe Hellman’s too.  A little jar.  Everything we  bought was in the little jar,tube, bottle, box or scoop.  I suggested to Mom once that we could save money by purchasing bigger quantities.  She straightened me out on that thinking.  Only rich people could afford to buy big tubes she said.  I figured out later that her “rich people” were the middle class.  I watched “Leave It To Beaver”  and wished I was in that smiling rich family.  The hedges were trim, mom vacuumed and dad came home on time every night sober.  It was like we lived in a place called Pooristan.

I still love saddle oxfords

If bill collectors came to the door, Mom would push me to tell them she wasn’t home while she hid in the hall.  They looked straight at me with eyes that said “You are lying little girl”.  We shared that moment.  I swore that I would never have the wolf at my door.  I determined to get a good job, maybe teaching, and get a used station wagon, maybe red.  That’s why I am on my 3rd red Volvo. Maybe.  Never did get a station wagon.  Still love watermelon.  Grew my own this year.

From about age six, I collected pop bottles for pennies.  I went to Cozad’s Grocery and anguished over what candy to purchase, favoring slow treats like a Sugar Daddy. If other kids collected bottles, I would cash them and take a cut of the money. I had the corner on the market. Other kids weren’t even allowed to leave our street. From age ten, I took in ironing, babysat brat kids while parents worked second shift, cleaned houses, anything to get money for school clothes and saddle oxfords. Of course in my house I washed dishes, cleaned house, did laundry, then hung it out.  There was nothing wrong with that, my mom worked in a factory everyday.

I still love saddle oxfords

I babysat my brother every summer from age 11 when he was two. In exchange Mom would  get me “something nice” at the end. Once it was my cousin’s used record player.  I couldn’t believe my good fortune.  I went downtown on Saturdays and spent the afternoon choosing a 45 rpm record.  It was 45 cents.  I played Motown non-stop. When I was fourteen I got a blue Princess Phone,  which was good because Dad always pulled the house phone out of the wall when Mom tried to call the police on him.  Phones didn’t plug in those days, the phone man had to come and repair it.After a lifetime of pushing myself to do better, the wind stopped blowing. Now that I spent my life getting out of Pooristan, can I enjoy retirement or will I fear the wolf at the door?  I have been thinking a lot about that.  And I’m only 4 months past treatment number two for hep c.

I did the craziest thing today, in response to a head hunter’s call, I sent in my resume  for a position as a Medical Affairs Director (managing a team of liaisons and of course managing up).  It is a small biopharm company that focuses on orphan drugs (rare diseases).  What was I thinking?  I don’t want to work that hard or long.   IF I talk with them, I’ll price myself out of the market.  A former colleague contacted me last week about some part-time project work.  After talking with him, my skin crawled from all the business bullshit slang.

How would I give back to the world if I could do anything?  I got all this education and pretty good team management skills, but low tolerance for bullshit.  That rules out about everything. I would like to help kids in difficult circumstances, but I remember the church ladies trying to help. No thanks.  My childhood stuff isn’t completely in the closed file.   I wouldn’t mind making a little money but that isn’t the “it”. Suggestions?

Ungrateful Bastard that I am…Hepatitis C

You Bastard, you killed Kenny

Hepatitis C treatment ended five weeks ago.  All is going well (~ nothing is wrong).  Went to Costa Rica with grand kids, hiked (slowly) up mountain sides.  Thank you Symbicort and red blood cells.  Now home.  I want to lay in guest bedroom (my sick room), watch recorded TV shows and eat sugar.  What’s up with that?  Fighting some mental and physical depression.  Back up.  Not necessarily so…anytime things are caddy wampass I frighten myself with the depression (DEBression) stick.  Kinda like a boogie man under the bed.

Ungrateful bastard that I am, I want to just “be okay”.  WTF does that mean?  Everyone who is “okay” raise your something.  Last time I re-uped for life post-treatment, I slowly weeded the front garden to demonstrate focus and progress to myself.  It took a week.  Currently it is 108 F heat index…so the hell with that.  I go to bed and get up the same time everyday.  Learning how to fall asleep naturally.  Not true…trying to learn how to fall asleep.  I’ve always had some distressing insomnia.  Maybe that contributed to my drinking a quarter century ago.  Maybe not. Currently I’m on two non sedating antidepressants and one sedating, slowly weaning off.  I can hear AA people judging.  Ta hell with ’em. Note to self:   What other people think of me is of no consequence.

You’d think I’d be more sensitive to the term bastard.  I’m not.  One thing I’m clear about, being born out-of-wedlock is not my burden.  Not sure I knew that 30-40 years ago.  And views change.

“Now more than half of all births to American women under 30 are born out of wedlock, and the trend in marriage-less birth is becoming an accepted reality of American life.” Don’t you love marriage-less over out of wedlock?  I wonder which group with an axe to grind is funding this.

“According to an analysis of government data, conducted by the research group Child Trends and reported by The New York Times, the last 20 years have seen illegitimacy among white women in their 20s with some college — but not a full four-year degree — rise more quickly than in other groups.”  …gotta love the internet.

Ah, yet another chapter in “Me-Me-Me”  My favorite subject, I am afraid.  Better keep dancing with the psychiatrist a bit longer. 

http://www.mysymbicort.com/

“You bastard, you killed Kenny”http://www.youtube.com/watch?feature=player_detailpage&v=1A6f3jHTC-Y

http://articles.businessinsider.com/2012-02-21/home/31081751_1_illegitimacy-black-children-unmarried-women

The Butcher Knife Solution

When I went through treatment #1 for Hepatitis C, I discovered that there is crazy in me, lots of crazy.  I get overwhelmed when I am overwhelmed.  Nature/nurture who gives a shit? I have, in my life, gone through self-help jibber jabber, 12 steps, journaling (which I hate-hate), therapy,week-end retreats, working with women in jail that want to stay sober once released without becoming a Baptist,  blah blah blah. I dealt with the demons of my childhood. I put all that little kid stuff in storage somewhere. Interferon drug out the box.

I read a book review that says most horrible childhood memories  published today are fabricated for greed.  The critic says the odds are against finding a person who has an intense childhood memory, wants to share it and is a good writer.  Misery Lit, what a category.  Where is Oprah when a bad critic should be exposed?  BTW, I never watched Oprah.  Too folksy. Makes me think of me.  Does my folksy bug others? Does it seem insincere? See, we all think about ourselves.

When I was a kid, my dad regularly came home drunk after bedtime, wanting money and the car keys.  Nobody slept until he got them or he passed out.  If it got really bad (poorly defined), Mom would grab up my little brother in the bed sheet and tell me to get her pocketbook and run to the car. Winter or summer. Scared me to death.   We got in, Mom started the car while I locked the doors.  Dad came flying after us “You’re not going anywhere”. I was shaking, maybe crying.  He yanked up the hood and pulled out the distributer cap.  Over and over we had no choice but to return to hell. One dawn found me with a butcher knife standing over his passed out body.   I was the grown up on duty (GOD).  It was my job to come up with solutions.  At least my mom and brother could get some peace. I said to myself “Just do it.  It’s okay if you have to go to prison.”   I couldn’t do it.  Mom was asleep on his shoulder. We didn’t talk about it later. We never did. Dad sang Hank Williams “Hey good lookin’, what you got cookin’?”  while Mom cooked breakfast, like the night before didn’t happen.

My good grades started to slip.  My teacher, Mr Kitchen,  asked if there were any problems at home.  My skin blistered red and I muttered no, everything is fine.  I still remember the moment.  I stared at my white gym shoes with broken strings. I was so ashamed.  He could tell my secret. (Therapy says it isn’t my shame.  Damn Interferon says yes it is).  I couldn’t look him in the eye ever again.  After that I got pulled out of class to see a visiting somebody. I went way up the winding steps to the nurse’s office.  The stone stairs had metal flicks.  There were multiple visits. The kids that went up there had some kinda broken something, like a learning disability or speech impediment.  They were outcasts.  I don’t remember who I saw or what I said. I was about eleven.

One time when we didn’t have any money,  Dad took the sewing machine my mom traded for.  He was sneaky, but I saw him. The cord caught in the door as he left.  I hated him.  I also hated sewing.  My Home Economics teacher, Mrs Lodge, said that I was the worst sewing student she had except for Alice Johnson.  Alice Johnson was the retarded girl in our class (that was how we spoke then). I never finished the baby blue robe I was making in class for my mom. So  Mrs Lodge took it home and finished it for herself over Christmas.  I pictured her in Mom’s robe.  In retrospect that was a bit shitty of her.

Dad would go out for bread and not come back for weeks.  Home was quiet.  I preferred that.  Then Mom got a collect call from Florida or somewhere.  Why am I telling these stories?  Interferon drug out the box..

After my parents sobered up and became adults, it was my turn.  I traveled a similar path but in a nicer neighborhood.  Isn’t that incredible??  I would be visited for a decade by active alcoholism and drugism and to this day intermittent depression. Less intermittent, more depression. One doctor called me a high functioning depressive. I was so proud. It is important to me to do well in all things.

Dad, my daughter and my brother. Dad was about 3 years sober there

BTW my dad and I built a loving effortless bridge when he sobered up.  He was the kindest most humble man.   My daughter spent summers with him and Mom.  They were best friends.  Unconditional love.  Who knew?  I’m just glad we had the second life too.

When Dad died, in lieu of flowers, 100 AA books were distributed in jails. He always helped the down-and-out drunk

Why am I telling you all this shit you either don’t care about or are horrified by?  Interferon drug out the box.  It is the stuff that leaked out of me during treatment.  Remember my suggestion for a therapist that knows about Hepatitis C?  These memories are why.

http://www.cowboylyrics.com/lyrics/classic-country/hey-good-lookin—hank-williams-14934.html

http://en.wikipedia.org/wiki/Misery_lit