Tuesday, July 31, 2018

The Day I Discovered My ATM Gene


Peipins   “The Day I Discovered My ATM Gene

               After receiving a breast cancer diagnosis, I recently got a detailed genetic test from the company, Myriad, which gave me a surprising result.  I discovered that I had a homozygous variant of the ATM gene.  What did this mean?  The interpretation given was that it had uncertain clinical significance which meant nobody really knew.  Not surprising since this is what happens when technology goes beyond our ability to understand where it has taken us. 
            Armed with a brightly colored document, I sat down with my oncology nurse.  She asked, “Were your parents related?”  No. Both my mother and father were from Latgale, the rural province of Latvia that is somewhat isolated from the rest of the country. My father grew up in Siberia where Catholics often immigrated to in the hopes of owning land they weren’t permitted to do in their own country. There was no connection between them. In fact, my parents only met in Buffalo, New York, where they ended up as refugees after the Second World War. 
            ATM stands for Ataxia-telangiectasia, a rare illness that affects the neurological system causing difficulty in movement and severe disability usually appearing in early childhood.  My nurse got on the phone with Myriad to speak to a genetic counselor.  I heard her answer to the question I could imagine, “Cognitive problems?  My patient is a university professor.”  At least I was before all the cancer treatments. 
            No cognitive dysfunction but I’ve always had a propensity for magical thinking.  I have a deep survival instinct but not much of a sense of how to live practically.  Could there be a connection to this genetic anomaly? Could this ATM gene variant have caused my wanderlust, my lack of establishing a home? I did my best when I lived in Spain where the details of life were taken care of.  Health care was universal and my monthly salary covered my expenses which the bank paid automatically at no extra cost.  I even received a double pay at vacation time.  Back in the United States, I try my best to control all of my limited income and the ever increasing expenses caused by an inability to go back to my profession.
            So where has this magical thinking taken me?  To a deep quandary.  Who can I believe in this tangled world of cancer treatments?  Oncologists, cancer survivor networks, big pharma, and the disgruntled suffering patients you meet every day at the chemo labs all have different takes on what works. Bouncing on a trampoline, putting baking soda in your water, and fasting were all “cures” I heard discussed in the chemo lab.  The lab itself offered a refrigerator loaded with soft drinks and baskets of salty snacks. At least those items I could discount yet I have no idea what would help a patient survive though I read through e-mails from “The Truth about Cancer” and blogs from the few patients who have been cured. 
            I want to believe in radical remission, the possibility of total healing that conventional medicine rarely provides.  Or I can check the statistics and think, yes, I can survive five years with barely tolerable side effects from the drugs that keep me going but offer no real guarantees of a cure.
            For many cancer patients their most trusted confidant is often their oncologist.  This surprises me.  I thought the days when the doctor took on a Godlike status and there was no room for doubt were long over.  After all, these days, we need to be doctors ourselves doing as much research as possible through the mess of Internet fake news and professional articles. My own oncologist commented to me, “You’re always negotiating.”  In my mind, it’s what’s keeping me alive.  Is that magical thinking or the only sane way to progress in this medical world?
 My perspective on doctors is the opposite of trusted confidant.  There is a conflict of interest with many health care professionals locked into following industry established protocols and recommendations from pharmaceutical companies promoting their latest  drugs. Many of these drugs give a negligible increase in life expectancy and may be variations on the drugs already out there.  Many of those drugs undoubtedly increased life expectancy.
There is also the question if a billion dollar cancer industry is even interested in curing the cancers out there. Breast cancer turned into a chronic ailment is a huge financial boon.  Five to ten years on estrogen suppresents for estrogen positive cancers racks up profits.  Not to mention the cost of chemotherapy itself. Neulasta injected to help mitigate the effects of chemotherapy is eight thousand dollars a pop!
 I’m sure there are many caring doctors out there but many patients blindly follow any advice they gave.  The hope that the next treatment will work can lead to endless suffering and a deterioration of the quality of life.  It’s heartbreaking to see a young cancer sufferer saying “I’ll beat this,” and treatment after treatment takes away the possibility to spend quality time with her family.  A battleground is not the right metaphor for cancer survival.  Cancer cells are in all of our bodies and killing them off along with healthy cells may not be the best way to go. 
What is the answer?  Fear is the biggest factor in making decisions about medical treatments.  If I don’t follow the doctor and take this medication will I die?  Do I have to suffer piercing headaches, eye pain, depression, and joint pain that makes me feel a million years old because of taking an aromatase inhibitor?  Is there a better solution?  What could it be?  Is there any chance researchers are working on that or is it simply not profitable to do so?
In my magical thinking universe I would take the thousands of dollars spent on chemotherapy, surgery, and medication, and take a long trip.  I’d visit a Vedic astrologer in India,  meditate in a Buddhist temple in Thailand, and lie on a beach in Crete soaking up the hot sun listening to the waves carry tiny stone pebbles.  Instead, I sit at the computer eking out an almost minimum wage at a testing job and wondering if this is how the last years of my life will be spent in this worry and doubt.
           

Thursday, July 5, 2018

You are Enough Writing Contest

     When did you decided to write and when did you give it up?  Was it from lack of confidence?  A lack of time? Why, when you loved your childhood diary and filled notebooks with quotes and poems, did you stop?  Writing is the one art form that requires the most basic of resources- paper and a pencil.  Think of the importance of a sheet of paper in a prison or a piece of birch bark scratched upon in a Gulag in Siberia. This is our heritage as writers. What we write has meaning and purpose!

      Remember that only you can tell your own story in words that reconstruct your life in a new way or in words that show why you are here on earth.  Your writing may inspire a reader to face a difficult situation or bring a smile to her face. Readers want to learn how you or your character survived a divorce or managed a happy childhood in spite of a raging father. You are able to do this with your words.

      We now participate in what the poet, Robert Bly once called the "Sibling Society".  It is a world where we are all equal and expertise is not given its great importance.  This has the negative effects  we see in the world of politics and of course,we wouldn't want our doctors to be without training and knowledge.  Yet, this equality opens doors to writers and artists who once may have been called outsiders without access to the traditional systems of education.
      We can pursue our dreams of writing.  We can learn by doing, by participating in workshops, or following a more traditional path of education.  Whichever way we choose we are writers!


.http://positivewriter.com/writing-contest-you-are-enough/ 

Monday, April 2, 2018

Patchouli

     Patchouli is the fragrance that instantly brings me back to the hippie era of the late 60's and early 70's.  The other night I sat next to a friend wearing that oil at a conference and the smell came back to me in all its power.  Where do you find it these days I wondered.  There's one old head shop called Terrapin Point.  Its window cases are filled with water pipes and assorted paraphernalia.  Somewhere in that shop there must be some to be found.
     Did patchouli originally become popular to mask the smell of weed?  These days the smell of weed is so potent these days nothing could disguise it.  It hangs over parking lots and wafts up from my downstairs neighbor on occasion.  So patchouli belongs to that more innocent age.
 .   Catching the smell of patchouli the other night brought me back to my sister's visits home from college.  After years of ironing her hair and dressing in outfits she sewed herself, she was now in worn out denim jackets, and jeans, the smell of patchouli following her into our rustic country world.
 She brought home albums from Blind Faith and War while I was listening to Joni Mitchell and Harry Chapin. We'd sit in her care and smoke  cigarettes (not joints). Cigarettes were taboo enough for women in the Latvian culture back then. The first inhale left me dizzy but I rather liked the sensation.
      So patchouli ushered in a new world, far removed from cattle grazing, my mother's long illness, and my father's old country strictness. 
      Years later on a visit to a flower show at the Botanical Gardens, I found a patchouli plant for sale in the gift shop.  I had no idea such a plant even existed and I couldn't resist buying it. The salesclerk said," Thank you for buying that.  I hate the smell"
        But for me, patchouli was the unforgettable scent of freedom!

Monday, December 11, 2017

Dreams of a Water Soaked World

     As most poets know, sending out work can be a bust.  Many sites require a reading fee and if you were to send out your work to as many literary magazines as possible, you'd go broke.  What happened to the days when writers were paid?  Now, you're lucky to get a copy of the publication where your poems appeared.  There is another catch too.  If your work was previously published. even online, that can disqualify you.
     Finally, I decided, after having published enough poems for a resume, that I would do just that- publish my own work on my blog whenever I felt like it.

          Dreams of a Water Soaked World

My mother reads
cards for the gypsies
camped outside of Livani,
my legacy-
    the march of nighttime faces
    through my brain,
the dead that
nip at my heels,
Grandma is coffin garb
walks on clouds. 

Wednesday, November 15, 2017

On Beauty (to borrow a title from Zadie Smith)



She walks in beauty like the night, beauty is in the eye of the beautician (as an old friend used to quote), and what has brought me to this rather mundane subject?
      There is a deep insecurity in how we view ourselves or advertising would never have taken such a strong hold on our psyches.  Perhaps when we are most beautiful we are most unaware of its power or like in our adolescence, when we are at our most insecure.  How much time have we spent in our lives grooming and putting on make-up, dieting, obsessing over every detail?  How much money have we spent on the products that promise miracles?  And all of it for nought!
     I recently experienced a barrage of compliments over my hair and appearance.  What’s odd about that you may ask?  Well, I have never been so unhealthy in my life.  I have stage 3 breast cancer and wear a wig.  The wig has been complimented more than my natural hair in any of its incarnations has ever been despite the fact it never turned grey and was a source of pride for me.  
    The conclusion I reach is artifice is beautiful.  We know that from all of the touched up photoshop images that are part of  our daily lives. We’ve lost the concept of what a healthy beautiful person might look like regardless of age.  I stopped to analyze my wig- if I had to keep my hair in that condition, it would require color touch ups and monthly cuts. To the touch it feels dry as a bone.  That instead of a head of healthy hair is what triggers a positive response.  Could it be true- in this society you can be most attractive when you are wearing a wig and at your worst.

Wednesday, October 11, 2017

No Pink, No Battlegrounds

     I've delayed writing about the theme of breast cancer for a couple of reasons.  First of all, there are so many people writing about their experiences and a I'm not an expert on the topic in any way.  Secondly, the other question is how long will I be here to write.  That' I have no way of knowing.  But here goes anyway.
      On my last visit to physical therapy (to try to mitigate the effects of a mastectomy that leaves nerve damage among other dilemmas) there was a trampoline set up in a corner.  I mentioned to the PT that it was good for lymphatic drainage.  Her response was, "really?"  Every cancer patient I've encountered has heard about it and some have a mini trampoline installed in their homes. 
     Therein lies the disconnect.  Through treatments I've spoken to many women who are trying alternatives to the standard chemo, radiation, and pills.  Almost none of them discuss this with their doctors unless they're lucky enough to be in an integrative medical center. 
        When I mentioned to a nurse that I was trying fasting before chemo to lessen the severity of the effects, she didn't think it was a good idea.  No wonder there is no discussion here. It helped me a great deal and it's written about in alternative and traditional articles.  Instead, she described a patient who loaded up on chicken wings before treatment. 
        Conventional treatment has turned the physical body into a battleground which is precisely the metaphor that is not working for us.  Cancer cells are in everyone's body.  The key is to keep them in check, from growing and invading  healthy tissues.  Another point is to keep them from returning.  Conventional medicine gives their cure rates of 5 years with some luck and a lot of suffering.  How many patients have a recurrence?  A cure in my definition means it does not come back. There are no guarantees on this journey.
        So keep the faith.  Try whatever works for you.  Don't blame yourself for not being cheerful enough or whatever else you may be told.  Give yourself a break!  
        
      

Saturday, June 17, 2017

This was a fun story about cars I've been meaning to post.



The Car is Ready to Blow

Calvin was always complaining about progress and how the US was falling behind. Now he was back on the same jag.  ¨It´s true, Doug.  Look at China.  Cars show how far a society has come.  Progress. Now they´ve got more than us.  That´s an indicator; everything is Chinese; it´s because they´ve got cars now.¨
¨Come on Calvin, what are you nuts?  What´s this poison soup we´re breathing? Carbon m-o-n.-o-x-i-d-e.  Take a deep breath of that shit.  Fill up those lungs.¨
The two men were standing on the overpass of Route 20 A next to the mall waiting for the AAA to pick up Calvin´s car.  Smoke was billowing out from under the hood and the engine looked like it was ready to blow.  Even with his car practically on fire, Calvin wouldn´t stop defending cars. 
¨The Chinese are now ahead of us in pollution too.  They got big black clouds there.  You can´t see the light of day in some of those cities.  That´s progress?¨  Doug continued.
¨Think of it; the smell of a new car. Picture it a Jag or, let´s say a Porsche.  Soft leather, heated seats in the winter when you get into that baby.  Cream color interior, GPS, a sound system better than you got at home.¨
¨Get out of here, it´s not sex we´re talking about.  Dude, dream on. Where do you see a Jaguar?  What do you call that smoking up a storm?¨  Doug pointed to the 20 year old Chevy ten feet away.   ¨You think it could explode?¨  He stepped farther away.
¨Nah, only on TV.  It takes a lot to get one to blow.  You got to cover it in gasoline.  My car is fine.¨
¨What´d you do, forget to put oil in there?  You with your cars.¨
Calvin ignored Doug and continued his reverie.  ¨Power’s what you want under you.  You can take on the world.¨
¨How long did they say?¨ Doug was getting impatient.  ¨They´re usually pretty good.¨
¨An hour about.¨
¨That Chevy has seen better days.  Maybe you should get that dream car.¨
¨The Chevy was Dad´s.  Still got some life in it.¨
¨Yeah, if you keep pumping your paycheck into it.¨
¨At least I´m not on some corner waiting for a goddam bus.¨
¨Well, at least, I´m not poisoning anybody.¨
¨You kidding. With those buses.¨
¨They´re ecological now.  They burn natural gas.¨
¨Next you´ll tell me they burn chicken shit.  You luddites are going to set us back a few centuries.  Then you´ll be happy.  You won´t have any cars, no lights, no TV, now that´s ecological.  Get your garden going.  Make your own clothes.  What kind of future is that?¨
Doug laughed, ¨I´ll keep my way.  You stay in that pile of shit.  I´m going to walk to the mall.  I got to get my daughter´s birthday present.¨
¨See how you get home.¨
¨Hey, I´ll take a bus.¨
¨Remember that´s why we´re in this mess.  There is no bus.¨