Snoop Dog, Come On Down!

Don't forget to spay and neuter your petsBeing in bed 24/7 without the ability to lift your head will cause your brain to accept the unacceptable…Reality TV Shows.  I began to watch them as though watching a poorly rehearsed train wreck.  In horror, I couldn’t look away.  At first it was a Project Runway  seven-hour marathon which I slobbered and dozed through.  Then Yard Crashers/Bath Crashers/House Crashers/Income Property/Dear Genevieve/Run My Renovation (RMR).  I even submitted to RMR on line…But they don’t really send out cute Joni.  In fact they don’t do anything and that is good.  I can’t imagine a reality show at my house with me on hepatitis c treatment. ” Hello, pretend the camera’s not in your face and tell us how happy you are with your new environment friendly parrot poop kitchen.  The newspaper floor’s recyclable”.

Going through hepatitis c treatment is sort of like going through labor.  There would be zero population growth if women could remember the first one.  I have one child.  She was born full breech.  I remember.  So why go through a second round of hep c treatment?  Fear of the pain of a cirrhotic death.  Again pain avoidance.  I can’t believe I used the old “going through labor”  analogy.  I hate it when women do that.  I won’t even have lunch with those women.  Shut the Fuck Up!

I had lofty dreams for this down time: learn Spanish, keep a diary, write a book, plan a big trip, read a couple of classics, walk every day, meditate.  What was I thinking?  That I was just gonna have a fractured spine?  I’ve had that and got back on the horse, no shit.

DIY: I couldn’t do shit but got it in my head that my bedroom needed french doors, the living room color was too dark (Osso Buco) and the dining area needed a skylight.  I hated the bed sconces, was sick of the plaster patch on the ceiling and the thumping ceiling fan.  All must be fixed right now (I know, redundant).  Even in the best of health, I cannot do anything myself. My dad told me years ago, when I was trying to help him remodel my house “Good thing you went to school”  Truer words were never spoken.   Poor Spanky tried to explain the error of my crazy thinking process without me going straight to sobbing.  I have no  explanation for the sobbing.  Except to say that my every emotion could and would leap tall logic in a single bound.

Cooking shows:  I watched them and it looked so easy.  Giada, Ina, Nadia G’s Bitchin’ Kitchen (my favorite because it is a comedy too), Top Chef, Chef Roble, Chopped, Chopped Champions.  I couldn’t watch Iron Chef, too many moving parts.  Why would I watch cooking shows when I couldn’t stand the taste or smell of food? I don’t know.  I dropped 20 pounds and never moved.  Basal metabolic rate.

I couldn’t watch my favorite game show,  Jeopardy.  I felt like I stroked and couldn’t find my answers.   Couldn’t watch  The Daily Show with Jon Stewart.  It required knowledge of current events to get the jokes.    Couldn’t watch movies with a story line.  The Marx brothers were good but again too many moving parts.  I found myself watching Ice Loves Coco with Ice T (my personal bottom)  and The Price Is Right with Drew Carey. I shit you not.   Drew Effing Carey!  Snoop Dog was on for his charity.  That man knew the price of everything from Zesta saltines to a Harley.  He won $75K for an old lady.  I think she shit herself on stage.

How did I get from “I don’t watch TV” to “The Price is Right”?

Yep, Snoop Dog on Price is Right. I thought it was the drugs

How did Drew Carey get from here to The Price Is Right???

 

 

 

 

 

I couldn’t read, the books were too heavy and my concentration too light.  During the second treatment I listened to books on tape.  The important issue was the sound of the reader’s voice.

At the kids section of the library I got books  on how to draw.  I sat in bed and drew dinosaurs, flying squirrels and bunny rabbits.  I drew the two trees in the pasture through our three seasons.  Then with the drought last year, I drew them dead.   My art work was terrible,  but that wasn’t the point. Since my analytical brain was pithed, I went to my dormant-since-five-year-old creative brain. I now have a closet full of art stuff/supplies and I like it. I never show my stuff to anyone but Spanky.  He never judges.  He calls me an artist. It makes me squirm. I hung one painting on the wall (on a push-pin) but not where folks would notice.  I still listen to books on tape a lot.  Still can’t sleep.

Don’t forget to spay and neuter your pets Bob Barker.  BTW, turns out Drew Carey has a blog.  Don’t we all?

en.wikipedia.org/wiki/Ice_Loves_Coco

http://bitchinlifestyle.tv/

http://www.drewfromtv.blogspot.com/

In The Waiting Room With The Losers: They Don’t Look Like Losers, Do We?

Tuesday Girl

When in a clinical trial for hepatitis C, there is no place to hide in the waiting room.  We are all there with our livers and our coolers full of injectable poisons.  You can tell what trial each person is in by the cooler they carry.  And watching the progress of a person, you can evaluate the side effect profile of the drugs.  Sort of. Do they bother combing hair? Coloring lips? Putting on lace up shoes?   Is that insider trading?  No, studies are blinded.  But we are not.  Clinicians would learn a lot observing us before we go on stage with the white coats.

I’m a Tuesday girl, I come on Tuesdays.  I recognize the Tuesday people.

You can clearly see the transplant candidates.  They look like Cecil without a smile.  A  yellow-green snot color with a gaunt face and an ascitic belly.  The post transplants look less yellow but more waxy, and kinda more dead.   High doses of steroids and immunosuppressives  will do that.  I look around thinking “These are not my people”  but they are.  If I look beyond the medical realities, they show up in a shirt and tie, uniform, sweat suit. But they don’t look like, I don’t know, losers.

I want so badly to change the TV to CNBC or CNN. But I am too short to change channels and everyone is staring at Good Day Houston.  I want to scream.  I breathe in and try to focus on questions I have and remember to request a copy of my lab work.  Don’t forget, don’t forget, don’t forget (Brain Fog).

I am sitting where I can’t see the TV, and listening to a book on my phone.  But then I watch everyone watch Good Day Houston and try to guess their faces.  Ugh, the only thing worse than a national daytime talk show is a local daytime talk show.  I remember Girl Talk with Virginia Graham out of Cincinnati when I was a kid home ill. I’ d never seen anyone so made up in my life.  And at 9 AM.  She had her hair combed into cotton candy, and four shades of lip color.  I don’t know about her feet.  She motioned for guests to join her at the coffee table.  Her jewelry jingled but her hair never moved. .  She was not my people.

Virginia Graham (the early 60s) way before The View…
Woah!  I Googled Girl Talk and got something completely different.

We are in the Hepatitis C Virus Killing Business and Business is Good.

This fellow’s photo is here to encourage you to stick around to read the stuff below.

My Mamaw took Bufferin for  her “sick headaches”.  In looking back I realize she had migraines.  One day after coming out of the darkened bedroom, fixing her bun, she said  “How do it know where to go?”.  This is a woman who gave birth to 11 kids at home.

Mamaw Ora Mae Morris. I loved that woman. She smelled like biscuits.

The main reason to endure treatment is to kill the virus and get on with life.  With the addition of Bocephevir (Victrelis)  and Telaprevir (Incivek) , chances of clearing the virus have improved.  But, even if this isn’t achieved, there are other benefits:

  •  slow down the disease,
  • reduce or reverse liver damage
  • , reduce risk of liver cirrhosis/cancer,
  •  reduce need for liver transplant.

So how do we know the Hep C drugs are killing the virus?  “How do it know where to go?”

 Your blood is checked at the milestones listed above.  If the drugs are working, the viral load will go down.

Resist the urge to glaze over the terms below. Insist that someone on the treatment team explain the lingo to you. If that person can’t explain it, they shouldn’t be there. This is the language of your doctor when talking of your Hep C treatment results.

VL = Baseline Viral Load:  Amount of virus in your blood before treatment

RVR = Rapid Viral Response: The faster the response the better the chance of getting to cure.  This is assessed at 4 weeks

EVR = Early Viral Response: How you respond after 12 weeks of treatment.

SVR = Sustained Viral Response: No detectable virus 6 months after completion of treatment.  This is my next hurdle.

Resources:
  • Jana Lee, RN, CCRN, Advanced Liver Therapies, Houston

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