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Archive for the ‘Breast Cancer’ Category

screen-shot-2017-02-13-at-11-27-36-pmWhere were you fifteen years ago, Valentine’s Day 2002? Some of my young friends weren’t even born yet. Some of  my sisters and brothers in orange were inside. Some of you were celebrating Valentine’s Day and some of you were lamenting the lack of cards, chocolate and flowers.

I was sitting in a doctor’s office hearing the words, “You’ve got  stage 3B breast cancer.” What? No, that can’t be right. I’ve never smoked. No one in my family has had cancer. I eat my veggies and exercise. And what the hell, it’s Valentine’s Day. Seriously??

But it was right and none of that other stuff mattered. I was tapped on the breast by Breast cancer behind the wiresthe cancer demon and began a journey I never expected. Curiously, it almost paralleled with my prison journey. If I hadn’t been diagnosed on Valentine’s Day and started chemo and had my medical records, I wouldn’t be alive today because most of my treatment including my mastectomy was behind prison walls.

Although “they” told me I probably wouldn’t live five years, fifteen years later, here I am. Christine died; Gina died; Paula died; too many died; even David died, but I’m still here. Often I wonder why. And then I look at the book by my bed, The Book of Joy by the Dalai Lama and Desmond Tutu.

I first checked this book from the library, but after one chapter I knew I had to own it so I rushed to Costco where it sits amongst the latest book bargains, hot off the press. You might not notice it, but Pay Attention. Forget the best selling novels screen-shot-2017-02-13-at-11-32-38-pmand take this one instead.

It’s divided into three sections:

I    The Nature of True Joy

II   The Obstacles of Joy

III  The Eight Pillars of Joy

This book will open your eyes to the difference between joy and happiness. It will open your eyes to the incredible power and joy of LIFE, despite suffering and sorrow.

You’ve heard me say it a million times, “Everyone has a story.” Mostly those stories are about pain and suffering. You’ve also heard me say that there is great power in your willingness to be vulnerable and share your story with others.

The Book of Joy distills the power of our grief, pain and suffering and gives meaning to our stories.  I’m not going to give you a book report. Nope, you have to buy it  and keep it by the bed with a marker to highlight the meaningful parts. And then put a journal with it to write your own story so you’ll know why you’re here and what you’re meant to do.

What’s your story? Have you figured out your purpose? If you haven’t, no worries. I didn’t “get” mine until I walked into prison at fifty-seven years old. (Slow learner.) Judy Pearson calls finding your purpose your 2nd Act. 

Judy is a breast cancer survivor with an incredible story and a clear vision to make a difference in the world of cancer. She founded A 2nd Act to do just that. A 2nd Act: Survivorship Takes the Stage is a live, curated stage performance, featuring a cast of eight women survivors of ALL types of cancers, local to the city in which the show is being held. Professionally produced, each woman has auditioned for a slot to share her own story of how she’s using her post-diagnosis gifts of time and experience for the greater good.

I’m deeply honored to have been chosen to be part of the Phoenix cast for 2017 and Sunday we had our first table reading. At that table, The Book of Joy came to life. All of the women there realized the power of their stories while they were going through their suffering and from their pain, they have manifested extraordinary 2nd Acts. Their courage is humbling and inspiring.

The Phoenix event on Sunday, March 12th. I hope you will visit the website to get the details. If you know anyone who has battled cancer or if you have, I urge you to attend this event and bring your friends. You will laugh, cry, be outraged delighted and you may see yourself in one of the stories. Here’s the link to the site: https://a2ndact.org/the-2nd-act/

Meanwhile, back to Valentine’s Day. Maybe you have a marvelous date tonight. Maybe you’re sad because you’re alone. Consider this. In doctor’s offices all over the world women and men and children are hearing the words, “You’ve got cancer.” In a heart-beat, their lives are changed forever.

Here’s your chance for a really special Valentine’s Day. Instead of feeling blue, why not take some flowers to a senior center or a hospital or the VA? Why not invite your mother to dinner? Think outside the box and get creative. What wonderful thing can you do to brighten someone else’s Valentine’s Day? Who knows, it might feel so good it will become your 2nd Act!

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HairHairHair…

Why do we care
about hair?

What’s with the love affair
with hair?

Any supermarket, drug store or super store sells
miles and miles of hair care

Shampoo, conditioner, jel, mousse, wax, spray, glaze, color and bleach
A $160 BILLION business…Good grief. It’s only Hair.

It gets dirty
splits ends
has to be cut
limps or frizzes
falls out then
grows in places we don’t want it…

And yet

We care
so much
about hair.

Why do I care
about hair?

Born a redhead. Love my hair; thick and long.Screen Shot 2012-04-23 at 6.10.30 PM
Lots of body; does just what I want it to.
Never have to color it, perm it or battle it.
I love my hair.

Then Cancer comes.
Diagnoses instantly brings two thoughts:

Oh My God, I’m going to lose my breast, my hair…
Not necessarily in that order.

It’s on the pillow; in the shower.
The time comes. Shave it off.
TraumaDramaTrauma.IMG_2100
Not painful but it hurts.
Visible sign I’m sick.
I have cancer. I might die.

But I don’t die. Twelve years later I’m still here;
still thinking about hair.

Chemo; hair falls out. Who am I without my hair?
Mastectomy; hair starts growing back.
More chemo; hair falls out again. Who am I without my hair?
Hair grows back…sort of. ThinThinThin and grey and who am I without my hair?

I’m surrounded by Hair. Long Blond, Black, Brown, Blond Hair.
Who am I without my hair?
B & W shirt

Did you know?

Hair can be bought.
Hair can be had.

Did you know?
Beyoncé and Tina and Cher
all buy hair.

For a cancer patient,
insurance will pay for
fake breasts
and fake hair
So… I got breasts
and I got hair.

See there.
427481_392450830808345_1114863785_n

There I am
with lots of hair,
with thin thin hair,
with no hair,
with fake hair.

Who am I without my hair?
Who are you With your hair?

You know what? It’s only hair.
YOU are YOU
and I am Me
with or without the hair.

So there.

 

 

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Pale Pink Ribbon 2It’s October, Breast Cancer Awareness Month. The world of pink –  ribbons, t-shirts, give aways and things to buy. We race for the cure. We stand up to cancer. We support our loved ones battling or surviving the disease. We hear stories of women who have taken the journey, but there is one population we never mention, women with breast cancer behind bars.

Can you imagine the feel of shackles on your ankles? Hard, cold steel that does just what it’s supposed to do. It cuts into your ankles and restricts your movements to baby steps. Even when you are very careful, you wind up with blisters or ankles rubbed raw. And the weight alone drags you down.

Now imagine handcuffs. They too are designed to restrict but they can chaff and cut, especially if the guard who cuffs you is having a bad day. His bad day becomes yours, but your blisters are yours alone.

It’s two o’clock in the morning and the halls of the jail are bustling with guards dragging chains while inmates stand restlessly against the cinderblock walls. Dirty cream walls, faded black and white stripes, clanging, clashing cuffs and shackles. All that plus the commotion of fifty female inmates and ten khaki clad jail guards prepping us for the trip to court.

I’m not going to court; I’m going the the hospital to have my breast cut off. It’s time. I’ve had the poison. Now it’s the slashing. Then it’s the burning. Poison, slash, burn. That’s what they call chemotherapy, mastectomy, radiation. Poison, slash, burn.

I’ve been cuffed and shackled since two AM. I’m exhausted and freezing. The old morgue where they keep us for several hours is like an ice rink. Despite the cold, there are those tiny little roaches everywhere. They add to the despair.

Finally, when everyone else has been called to court and I am alone with my fears, I hear my name, “ALLEN. MOVE IT OUT! Followed by armed guards, I shuffle out to the jail van, jangling as I shuffle. The backs of those vans are cages, not designed for safety. There is a metal bench, but no seat belts, so I lurch each time we turn a corner. I cannot balance myself because of the cuffs and shackles and sometimes I crash to the floor. I’m bruised and shaken to my core.

Finally we arrive at the hospital. I shuffle into another holding cell and wait several more hours, still alone and very afraid. I’m crushed with a feeling of shame that I’m now much less than human. Four hours later I’m escorted to the OR. There the cuffs are removed, a gown is thrown at me and eventually I’m lead to the operating table.  Still shackled, I climb upon the table and they begin the very painful search for my very small veins. At last, as I begin to go under, the shackles come off. The guards will stay in the corner to watch as my breast comes off.

Five hours later I wake up in the jail ward, bandaged and sore but alive and still alone. On this particular journey, no one touches me except the surgeons with their knives and the nurses with their needles. I ask for a pastor or a priest, someone to pray with me, but no one comes.

When I finally return to the jail, the women surround me with love. At the darkest time in my life, the drug addicts, the prostitutes and the thieves looked after me and I will NEVER FORGET THEM. It is nineteen days before the medical department sees me to clean up my incision, take out the stitches and see if I’m healing.

This is the way all women experience breast cancer in prison. There is no comfort or solace. They go alone, they suffer alone, they return to their prison alone. Some might think that they deserve it, but I don’t think anyone deserves that kind of horrific treatment. It is devastating and demeaning to all of us as human beings.

It’s a dreadful journey inside or out, but there are many ways to take it. It’s one thing for Robin Roberts, Christina Applegate, Cynthia Nixon or Sheryl Crow to face cancer. They have the very best doctors, loving family and friends to surround them, and the entire world to care. They are deemed heroes by the press.

I wonder how they would handle the isolation and the incredibly hostile indifference that inmates face.  The lack of information, attention and care. I’m lucky. I have been both a patient with cancer and an inmate with cancer. There is a world of difference. I was diagnosed before I went inside. I’d already had six sessions of chemo. I went inside with a bald head, my medical records and a high profile identity. I think that’s the reason I got treatment. Gina, my young cellmate, didn’t have that advantage and she died a painful death, not of breast cancer but of myeloid leukemia. There are many, many others who have died of cancer and medical neglect. They fought so bravely though pain, fear, neglect, hostility, exhaustion and isolation.

Ask yourself how you would handle this kind of journey? These women are mothers, wives, and daughters, many in prison for addiction or low level drug crimes.When they should be healing, they are worn out fighting for treatment, constantly reminded that nobody cares, nobody cares, nobody cares.

In 2013, 296,980 American women were diagnosed with breast cancer and nearly 40,000 died of it. Everyone who battles this disease is a hero. It is harder than you can ever imagine. I am free now and miraculously still alive, but there are thousands I’ve left behind in jails and prisons all over the world, alone and afraid with their cancer.

Everyone deserves a prayer, but please send a special one to all those invisible women who face this journey alone. No one should be alone with cancer.

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Screen Shot 2014-07-17 at 11.48.40 AM On a day when the temperature has been about 112° for many days, put on your heaviest polyester pants and t-shirt, go out in your garage with a very small fan and spend the day.  Have lunch there, soup (yes, soup) and a baloney sandwich.  Sweep, mop and clean.  Watch a tiny T.V.  Read.  Try to nap on a plastic cot.  Eat a lukewarm dinner.  Spend the night.  This is Arizona prison in the summer.

Summer lasts nearly four months, 1440 minutes a day of sheer, unrelenting, blast furnace heat.  The small bit of grass on the field chokes and turns brown.  The few precious trees are gasping and pitiful.  Looking forlorn, the birds wander into the community showers to drink the stagnant water pooling on the hot concrete.

Prison yards are very spread out.  We walk everywhere, blocks and blocks between buildings.  No shade.  The offices and classrooms are air-conditioned, but that’s it.  Evaporative coolers slog away to cool the cells and cafeterias.  They work until the temperature hits 90°.  After that, the cells become concrete coffins of heat.  There is no relief.

One summer, when the temperature had been 117° for days, there were nineteen heat related seizures in one morning, and there is more heat exhaustion than I can count.  It all ends up costing money in medical attention.  One way or another, the tax payer pays.

My first prison summer was horrific.  The previous director had retired the year before, leaving a final gift to the population.  He had every inmates’ fans removed.  In Arizona, that would be cruel under normal conditions, but I was going through radiation and my chest had third degree burns, blistered, raw, and bleeding. Christine, my partner in cancer treatment, was worse than I was.  We were both suffering from searing pain exacerbated by the heat.  Christine’s father actually called the prison, offering a couple of fans for medical use as a humanitarian gesture.  Request denied.

In the middle of June, Gina was so sick, the heat adding to her misery.  Finally, Gina’s excrutiating death opened some eyes.  We had a town meeting to vent our frustrations and the new director came.  Very little changed in Medical after that meeting, despite the promises.  However, the new director did approve fans.  It was August by then and the heat lay over the prison like a shroud.  We were elated over the new ruling, but it took nine months for prison officials  to source an acceptable clear plastic fan to sells us.  Thankfully, they materialized in April, just in time for the next summer’s heat.  The small plastic fan successfully pushes the hot air around, and if you keep your t-shirt damp, it feels almost cool.

The five summers I spent on Santa Cruz before moving to Piestewa were torture.  Each year, I passed out from the heat.  Once, an officer found me unconscious on the floor of my room.  Twice, I collapsed on the yard on the searing concrete, and once I was sweeping and I just fell out over the threshold.  See, besides the heat, the pill I take to keep the cancer at bay, causes hot flashes as a side effect.  Sitting in a concrete coffin of heat with hot flashes is a different kind of torture.

Let’s get back to your garage.  What can you do in your stifling garage to relieve the heat?  You can’t go to the fridge for an ice cold coke.  You can buy a ten-pound bag of ice for $2.24, about a day’s salary if you are lucky enough to make 30¢ an hour.  For another $1.35, you can buy a very small, thin Styrofoam cooler to keep the ice in.  The ice melts in a few hours, but meanwhile, you can have the luxury of  ice cold water. You can also wet down your shirt and head.  You can wear a wet washcloth around your neck.  You can fill an old hair spray bottle with water and spray yourself continuously, sort of like the misters at an outdoor café.  That’s pretty much it.  Even the showers are scalding.  Maintenance refuses to go to the ‘trouble’ of turning the hot water off in the summer.  No relief there.  No relief anywhere.

My friend Krissy was new to prison the summer the water and power went off.  The entire yard was locked down for three days.  No water, no showers, no flushing, no evaporator coolers in the 6’x11’ concrete coffin.  Staff delivered inmate meals with one eight-ounce styrofoam cup of water that was gratefully gulped.  Krissy tried to stay as still as possible, but she and her bunky poured sweat, constantly using their washcloths to wipe the sweat off.  She said she will never forget the feeling of desperation, locked in that suffocating cell, or the rancid stink of that washcloth.

What’s the purpose of prison? Punishment is higher on the list than rehabilitation and America’s prisons are designed to punish.  Many people think that inmates don’t deserve more than two or three cups of water a day and a rancid washcloth. What does that teach?  It certainly doesn’t teach a person to be kind or considerate.  It does, however, teach inmates that they are worthless, disposable human beings.

Before prison, I was a confident woman.  Prison ate away at my confidence and  I realized then just how much prison had affected me.  It is a daily Chinese water torture of denigration, and if I was affected so dramatically, imagine what it does to others lacking confidence.

In the end, it boils down to humanity.  Is this who we really are?  Are we a nation that prefers to punish in such draconian ways?  Are we really teaching people a lesson?  I learned that what we are doing is treating people so badly that they become bitter, angry and mean, completely unprepared for a life of civility and respect.

I learned other things in prison.  I learned that everyone wants love, but many in prison have never had it…from parents, friends or partners.  Prison is full of horror stories, but the worst was about the girl on my yard whose name I never knew, and she had a nickname too awful to repeat.  She had been abused by all the boys and men in her family and repeatedly raped by her father.  At twelve, she became pregnant with her father’s child and at thirteen, gave birth to her son who was also her brother.  She was never still, always acting out and frequently in trouble.  She was desperate for love and attention, but had to idea how to get it.  Of course, she was in prison.  The abusive men were free.

I also learned that Jesus, Jackie De Shannon, and John Lennon were right…all we need is love.  Of course, that’s simplistic and we have made it complicated.  We have become a nation of fear and anger.  We’d rather flex our muscles than flex our hearts.  Love seems to always have conditions.

We know what we need to do, we’re just not doing it.  Be kind.  Be considerate.  Be respectful.  Stop judging and being petty.  Open your hearts.  Think…Is this the best person I can be?  You know it’s true and you know it works…inside and out.  

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Screen Shot 2013-05-15 at 8.03.25 AMToday, Angelina Jolie made public her decision to have a double preventive mastectomy and some people have dared criticize her. Good grief. Only someone who has been faced with that decision can possibly know the emotion involved. We’re all attached to our breasts. It’s part of nature, isn’t it. But if you have to decide between life or breasts, what’s the choice? Let’s see: do I choose my breasts or do I choose LIFE? Breasts or LIFE? LIFE or Breasts?

Two years ago I, too, faced that decision.  I’d already had one mastectomy. My oncologist and I decided it would be a good idea to remove the other one and have reconstruction. Having cancer on one breast was hard enough, especially under very harsh conditions in jail and prison. They call it “poison, slash, burn.” I’ve been poisoned, slashed, poisoned again, and burned (chemo, mastectomy, more chemo, and radiation). It’s a very hard journey for anyone, even someone who has the best doctors and all the comforts money can buy. Just the idea of doing it again is frightening.  Personally, it was not a hard decision. Between LIFE or a breast, I choose LIFE. I’m sure Angelina Jolie felt the same. If you feel compelled to make a judgment, wait until it’s your turn to make that same choice. I pray you never have to face that.

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Today friends took us to see Silver Lining Playbook, what we all expected to be a romantic comedy and cheery holiday afternoon. It is not. It is a painful look in the window of a family suffering from the raw consequences of bi-polar disorder and all that entails. The romance comes from the happy ending. We are supposed to walk away satisfied and feeling good, like everything is OK.

I didn’t know what bi-polar disorder was until I went to prison. Suddenly I was surrounded by so many women suffering, and I do mean suffering, from this disease. The mood swings were dramatic and the meds were not exactly balanced. When the women were on a high, they felt that they were fine and didn’t need meds. When they were on a low (and the low is really low), they were too angry to even consider meds. I have never seen so much pain. It was like their skin hurt. I felt if you touched them, they might scream in agony, like a horrific burn. The medical department is over-run with this and terribly understaffed. No one is getting appropriate and timely treatment, thus the meds are not properly regulated or adjusted. It’s a desperate and sad situation.

The film brought it all back to me. There is a scene where the lead characters (who are brilliant, by the way), are discussing all the meds they’ve been on. I know that conversation; I heard it a lot in both jail and prison. So many meds; so much pain. They listed them all and then came to Klonopin. They rolled their eyes and agreed that could make you comatose.

In the darkness of the theater, my stomach suddenly turned over and I gasped inwardly. Klonopin. It all came back to me. When I was in jail facing a mastectomy, alone and terrified, I could not sleep and I was exhausted, emotionally and physically. Loud noises made me jump out of my skin and what is jail without clanging and banging? I shook all the time. Bringing a cup to my lips sometimes took both hands. The doctor prescribed Klonopin for me. I had no idea what it was. Nor did I know that it was highly addictive. I just took it and then mercifully slept. When I was awake, there seemed to be a sort of fuzzy haze over the black and white stripes of my environment. I was still afraid and still shook but I didn’t seem to care as much.

Finally, I had my surgery and mourned my new, lopsided self. I went back to court a few times, and eventually was sent to prison, all the while dealing with the emotional distress through the fog of Klonopin.   In prison, when the nurse practitioner saw me, she was disinterested in my recent surgery and the Klonopin. They don’t prescribe that in prison. I had no idea why until later when my sisters in orange sighed and told me how addictive it is. At the time,  I had no idea what was happening to me. Suddenly, I couldn’t sleep. I thought it was the cold, tiny cell and one inch plastic mattress on its steel foundation.  I wrapped my t-shirt around my head and kept on all my clothes under the cotton jacket. Still, I shivered. I didn’t want to lie down or stand up. I tossed and turned. My skin hurt. I was short of breath and my heart felt like it was beating out of my chest. I had no idea what was wrong with me and medical wouldn’t see me. The agony lasted about three weeks, then slowly, very slowly I began to recover. It can take months for it to completely leave your system and after chemo and surgery, my system was very fragile.

It was much later when I learned this was drug withdrawal. It was awful. I also learned it is extremely dangerous to stop Klonopin cold turkey. It is a drug that should be tapered off, accompanied by medical supervision. Along with the painful withdrawal, it can cause seizures. At the time, I thought it was the cancer and I was probably dying. The surgeons said my margins weren’t clean and things didn’t look too good. I was sick, I was afraid, and death actually sounded like a great relief.

Everything I experienced was brought back to me in this film. But my story was truly minor compared to the other stories about the mental illness that many of these women battled every day and continue to deal with. This is one of the enormous issues connected with America as an Incarceration Nation. People who need mental health treatment are instead sent to prison. Health care budgets continue to be cut and so we bundle people off behind the wires and walls. Out of sight, out of mind.

In Silver Lining Playbook, Pat is lucky. He serves eight months in a mental health facility instead of years in prison. And he somehow manages to take his meds, find love, win a bet for his dad, and live happily ever after. If only it were so simple. It’s not. As we walked out into the sunlight, I wondered how someone diagnosed with bi-polar disorder would feel watching this film. I can’t imagine. This is a provocative  story, brilliantly acted and getting lots of buzz. It brought up painful memories and emotions in me that I felt compelled to share.

In sharing it, I hope you will consider how America is dealing with our community of people who struggle with mental health issues of all types. We must be more compassionate and less judgmental. It is not easy. I have a very courageous friend named Mary Lou Brncik who works tirelessly in this arena. Her organization is David’s Hope. I urge you to visit her site and LIKE her page,  http://www.davidshopeaz.org  Periodically she holds important Town Hall meetings to bring awareness to these issues. You owe it to yourself and your community to get on her mailing list and attend. We are all in this together.

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We make plans. We set goals. And then LIFE happens. Somehow those plans and goals don’t always work out.  Broken hearts, betrayals, divorce, job loss, death of loved ones, cancer, even prison. So many things can go wrong and frequently do.

This is a link to a beautifully written blog about plans and dashed plans that touched me deeply. It is about accepting the reality of the journey and realizing that the journey is EVERYTHING. When people do accept it, their lives open up in ways they never imagined.

If you are going through one of Life’s “gifts” wrapped up in tears, trials, and heartbreak, you may find comfort in this blog, The Soul’s Plan.”

http://liveyourbliss.wordpress.com/2012/08/06/the-souls-plan/

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