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Archive for the ‘Breast Cancer Reconstruction’ Category

March 18, 2009 to March 18, 2019
TODAY is the day I complete ten years of Probation.

Ten years is a good time for a review. What have I being doing since 2009? Well, first I’ve been reporting monthly to a probation officer. At first we had to submit a urinalysis  or “pee in a cup” every month even though we weren’t in prison for addiction. We also had to provide a monthly summary of our expenses and our income as well as a copy of our bank statement and a money order to the Clerk of the Court for restitution. Whenever I’ve travelled out of state, I had to ask for a travel permit. There has not been nor will there ever be privacy in my life. Actually in this age of media overload, if you think you have a secret, Google is not your friend. 

That’s not all I’ve been doing. I realized that our lives had been changed forever. We would never go back to the life we had. The prison experience was unforgettable. I wanted passionately to impact the world of criminal justice reform and David wanted to support my work. In the first two years I co-founded GINA’S Team, established a program at Perryville Prison to begin a bimonthly Speaker Series and find sponsors for the Toastmasters Club. This lead to the  GAT (Gina’s ATHENA Team) Leadership Class three times a year and a monthly book club for GAT graduates.  The Speaker Series included outstanding leaders like Rep. Kirsten Sinema (Now a Senator), Rep. Cecil Ash (now a judge), and Olympic Gold Medalist Misty Hyman. We started a monthly Speaker Series for the juvenile girls at Mingus Mountain Academy and helped amass over 2,000 books to begin their library.  We partnered with ASU to begin an internship program and became a community partner with the ASU Art Museum for “It’s Not Just Black & White” about prison reform. Volunteers showed up to start creative writing classes and civics classes as well as a Welcome Back program. Putting this together was like juggling cats into a marching band, but somehow we had a marching band of very cool cats.

One of the most significant achievements was getting approval for our 501(c)3.  We got a lot of help to cut though the intimidating legalese of that hefty application process and I breathed a sigh of relief when that approval arrived.

I published my memoir of my prison journey, The Slumber Party From Hell, and started speaking to a myriad of audiences, including Ignite and TEDx, with the goal of bringing the audience into my prison cell to hear my voice and share my emotions. To humanize the women I met and see them through my eyes. To shine a light into the darkness and to educate people about our wretched system. 

January 31, 2010
David and I renewed our wedding vows on the anniversary of our wedding in Acapulco so long ago. When David was released from prison, I hadn’t seen him in over seven years and I almost didn’t recognize him. He trembled badly on his left side. His gait was off, he had no balance, his speech was slurred, and he couldn’t even open a jar. At the prison when he went to Medical, they said it was nothing. “You’re just old.” Actually, it was Parkinson’s Disease. No proper diagnosis or treatment forthcoming.

Kudos to the VA for an accurate diagnosis. He responded well to the medication and the trembling became minimal. His balance and his gait came back and he worked hard to stay healthy because he wanted to take care of me while I went through a second mastectomy and the long process of reconstruction. The implant  on the side of the radiated skin was rejected by a dangerous staph infection.  Rushed to surgery, the implant was removed and I was watched like a hawk for danger signs. Four months later we tried again, this time using tissue and muscle from my latissimus dorsi.  We held our collective breaths while I healed. This time it took and this time David was with me every step of the way. 

Only one problem, he kept complaining of back pain and dealt with it unsuccessfully through stretching and yoga. The VA did lots of X-rays of his back. Nothing showed up, but his pain was visible.

March 1, 2014
We’d been out five years when one Saturday David said, “I think we need to go to the ER. I’m having trouble breathing.” In 24 years, he’d never said that. Terrified, we rushed off, and in just a few days, we learned he had a rare form of brain cancer. He was transferred to Barrows. The surgeon removed his brain tumor. His back pain stopped immediately, but the cancer was all over his body. Standing in the hall discussing treatment with the oncologist, considering my experience with cancer, I asked, “Are we talking months or years?”  His answer, “No, days or weeks.” My knees buckled. I had to tell my husband he was dying.

I slept on it, wondering what I could say. The next day when I told him, he looked at me peacefully and all he said was, “OK.”  We went home and Hospice came. Five weeks from his surgery, my Darling David passed on. He’s always with me in spirit, but loosing my husband numbed my body, my heart, and my soul. Just like everything else, a direct experience raises your empathy in uncountable ways.

OK, this was the five year marker. New role. Widow. Ugh.  Everything alone. Home alone. Meals alone. Sleeping alone. Conversation alone. I wanted to lie under the bed in the dark. I wanted to watch old movies, 1936 old. I wanted to scream and cry and die, but I didn’t. Remember, “this too shall pass.” Not easily, not well, not clearly. Slowly, painfully, harshly. Life went on and so did I.  Thank goodness for Purpose.

November 2015
Invited to speak at Operation Reform, a conference in Florida about criminal justice reform, I had an AHA moment.  A lot of nonprofits talked about their outstanding prison programs. However, none of these programs touched more than 10% of the prison population, usually much less. Nowhere in any corrections facility was there programing for everyone. There is no vested interest in corrections staff  increasing the number of programs or available seats in each class. Job security does not encourage successful programming.

Our programs at GINA’s Team saw outstanding results, but we only touched about 200 women a year of the 4,200 women housed at Perryville Prison. We were trying to empty the ocean with a slotted spoon.

Nothing was changing significantly. We needed changes in our laws and in our culture. We needed a paradigm shift. How can we do that? How can we create a cultural shift in our society? With a shared vision, collaboration, a passion, determination and never giving up.

January 3, 2016
The unthinkable happened. Sunday night, waiting for Downton Abbey, the phone rang. ID unknown. I don’t answer ID unknown. Ignored it. Rang again. Ignored. Rang again. Finally, voice mail. Said it was the White House calling! Sure it was. 

Actually, it sure was. It was an invitation to be a guest of the First Lady in her box at President Obama’s  final State of the Union Address the next week representing criminal justice reform. I was Very Cool. . .

“Seriously? You know I’m an ex-felon?” 

“Oh, yes m’am. We know all about you.”   

I’ll bet they do…

One week later, I was in Washington, D.C. I got to meet with Attorney General Loretta Lynch and Chief White House Advisor Valerie Jarrett. There was a lovely reception at the White House before the address. Then Mrs.Obama’s 23 invited guests were ushered into the motorcade and, with sirens blazing, rushed to the Capitol, just like a movie. Never in my wildest dreams would I have imagined this. It was not on my bucket list. Nor was emergency surgery the next day. I went from an incredible High to quite a Low in 24 hours.

Fortunately, that trip lead to more invitations to the Obama White House and the opportunity to meet like-minded people in our field. Among those was the team from #cut50. They recently lead the fight in Congress for the successful passing of the historic First Step Act, the first criminal justice reform in decades. For three years we’ve also collaborated on the National Day of Empathy and, thanks to them, I went back to the Trump White House for more action on justice reform.

April 2016
ReInventing ReEntry, a new nonprofit, was born. It was time to stop trying to empty the ocean with a slotted spoon. It was time to focus on criminal justice reform.

At that time, I was introduced to a life changing experience, a Reentry Simulation designed by some very savvy people in the justice arena. It was being conducted for government officials to educate them about the obstacles the formerly incarcerated face. The power and authenticity of the experience to create a paradigm shift excited me and immediately I wanted to bring it to the general public. In two years, I’ve facilitated the simulation around the country, including Columbia Univerity, University of California Irvine, Slack, DKB Foundation, Friends Seminary, and others. None of this was on my bucket list either.

March 23, 2017
After a bone-marrow biopsy, I was diagnosed with Myloid Displastic Syndrome. They don’t know what causes it, but they think it’s from all that chemo and radiation I had 17 years ago to kill my breast cancer. Great. It’s a cancer of the blood. There’s no cure except a bone-marrow transplant. Not on my bucket list. Right now my hematologist calls me a “watch and wait” patient. My platelets are low and I get tired, but big deal. People can live quite a while with this and I intend to, mainly because I have too much to do. Enthusiasm, purpose and that hopeful heart give me the energy to keep moving. Do I think about death? Sure, but I think more about Purpose and Chocolate.

May 2015
One final Big Deal in these last ten years. I wrote a letter to President Obama basically asking him to visit a prison. Additionally, as a child of the 60’s, I was watching overt racism rearing its ugly head again. Horrified, I shared my thoughts on racism in America, too. Pretty cheeky, huh, sharing my thoughts on racism with President Obama? But it was all for my own entertainment. I never expected anyone would read it. 

I later learned my letter was what triggered the invitation to the State of the Union Address. I was told The President gets about 15,000 letters, emails, faxes, phone calls a week. From those, the OPC (Office of Presidential Correspondence) chooses ten representative letters for his briefing folder for him to read at the end  of every day. Not the best; not the worst. Simply the voices of America speaking to the President. One day your letter was one of the chosen ones.”

Oh my goodness, I won the White House letter lottery. That letter changed the trajectory of my life and gave me more of a national platform, leading to more invitations from both the Obama and the Trump White House, using that platform to make a difference. It also lead to the inclusion of my letter in To Obama: With Love, Joy, Anger, and Hope, a fascinating book by Jeanne Marie Laskas about all those letters to the president. 

Remember, I’ve always said getting out of prison is like being shot out of a cannon into a brick wall. When I got out, my wall was padded. I went to live with friends in North Scottsdale in a gated community on a golf course. I know what you’re thinking. I went from one gated community to another gated community. What a difference a gate can make. 

Of course, they introduced me to their Scottsdale friends and I knew I had to tell the truth about where I’d been. “Hi, I’m Sue Ellen Allen and I just got out of prison.” Everyone had the same reaction. Big frozen smile. One eyebrow would go up. Slight look of confusion and panic.  They had no idea what to say and I had no idea what I wanted them to say. 

Then one day, while getting gas at a QT, a homeless man asked me for some spare change. It’s a tough way to make a living and now I was counting my pennies so I said, “Oh Sir, I’m so sorry. I just got out of prison and I. . .  Before I could finish, the homeless man threw up his hands and said “Lady, congratulations, Welcome Back!” No one else had said that to me, but the homeless man got it. He gave me a gift that day. He welcomed me back.

Being welcomed into the community is a critical part of reentry. It begins with awareness and empathy. Now I travel the country taking the Reentry Simulation into universities, corporations, churches, chambers of commerce, foundations, other nonprofits. Our goal is to raise awareness, empathy, and outrage about this incredibly punitive system. And it works. Wherever we conduct the simulation, participants describe their emotions: “Helpless. Frustrated. Angry. Defeated. Vulnerable. Furious. Failure. Unwanted. Unwelcome.”

How can we fix this? It can’t be fixed.  It must be Reinvented and we should not expect those who created the system to reinvent it. For the BEST reinvention, we need the BEST minds in business, technology, justice, health care, and  academia, to come together with the formerly incarcerated (or as I like go call us, the Alumni of the system) to look for solutions outside the traditional box, instead of “checking the box” on any and every application, “Have you ever been convicted of a felony?”  That’s on applications for jobs, housing, volunteer positions. It’s the highest brick wall we face.  

Did you know one in three Americans now has a criminal record.* Did you know every year, over 1.2 million students drop out of high school in the United States. That’s one every 26 seconds – or 7,000 a day in America.* 

Until lately, most of our national prison population have been people of color, but the opioid crisis is leading to more white people being arrested for crimes related to drugs. At every speech I give, people come to me afterwards to tell me about their son, brother, sister, mother, father, friend…in prison. Our Criminal Justice System is touching everyone.

In prison I learned everything I could about the system because I knew my journey was going to take me in a new direction, criminal justice reform. Prisons are successfully designed to be out of sight, out of mind so the hideous system isn’t visible until it touches you, and for seven years, I was directly touched. Then ten years ago, I walked out the prison gates into freedom and a life of advocacy for criminal justice reform. 

Life is a journey and in a lifetime, we have many journeys. I’ve had incredible ones and, at the end of this ten year probation journey, it’s a good time to take stock. What about you? What have you been doing for the past ten years? Is it time for you to take stock…inside or out?

*The Sentencing Project https://www.sentencingproject.org/
 *DO Something.   DOSomething.org

 

 

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I’ve been out of the loop for a while. Very busy with Gina’s Team plus more surgery just last week. More anesthesia brain. Typing is a challenge. Trying to rest but I had to send this out.

We do a lot of meaningful things at Gina’s Team. One is greeting women at the gate upon release with a big hug and a “Welcome Back.” Diane Bondurant, a graduate of our GAT program (Gina’s ATHENA Team), was recently released. She is a talented and intelligent woman as well as a creative artist. I asked her to write about the day of her release to give you a peek at those first hours. Here is her version:

                                Over the Fence and Into Reality

Sue Ellen maintains that being released from prison is like being shot out of a cannon blindfolded. She is absolutely correct. Regardless of how much time you’ve done, your release date approaches rapidly and no matter how much you have tried to mentally prepare for getting out, there is nothing you can imagine that is even close to the experience of getting released from prison.

When you are released from prison, prepare to be awakened the night before your release at all hours of the night. Between 10-11pm, the guards will bring you bags for your property, inventory your property, allow you to go back to sleep and then wake you up prior to 4am count to cart you down to Complex where the real release processing takes place. . Prepare to be up for at least 24 hours straight.

The general rule of thumb is that you need to give back everything that State Issue gave you originally or you may be charged for missing items. Anything you purchased that has ADC on it can go to anyone you choose-so donating your sweatshirt , those comfy sweat pants or that beanie to someone is ok-they don’t inventory the clothing you bought. You actually just leased it, but let’s not split hairs! The rest of your stuff will be listed on a property sheet and transported to the gate at complex to await your arrival.

After 4 am count, you will be transported to complex to await the processing that is to come. Drop your stuff at the strip shack and park it; it will be awhile. In about an hour, you’ll be summoned into the center of the complex to take your exit pictures, receive meds (if you take meds) and then will be allowed to sit in the complex courtyard (smoke ‘em if you’ve got ‘em-if you’re a smoker bring some cigarettes with you from the yard) to wait for the financial end of things to get under way.

About  2 hours later, you’ll be summoned to another room, given a packet that contains your exit ID and your debit card that your salary and savings account monies have been transferred to.  The officer doing the debit card activation allows everyone in the room to activate their debit card and then we’re all herded out to the gate area. If you were fortunate enough to get clothes sent in to you via a catalog (LL Bean, Land’s End etc.), you will be handed the clothes that were ordered for you and will go to the strip shack to change.

If you had relatives send you clothing, you will be handed whatever outside clothing DOC picks for you and be told to wear that out of the gate. You will then have to go down to the next building and pick up the clothing you were sent at the main property window.

Although you protest about the outfit you are handed, you know that you would walk across hot coals completely naked to get the hell out of Perryville. You accept the outfit (regardless of how it looks or fits) and you change into the DOC provided white vinyl skirt and hot pink stilettos in the strip shack. (Seriously, you wonder where some of those clothes come from.)

You stand in front of the gate with your storage boxes in front of you, waving to  people who are picking you up. The nightmare in orange is almost over. The gate opens slowly and you see friends, loved ones, or people from designated agencies sent to pick you up. You heave a sigh of relief. There is nothing like the joy you feel when stepping over the threshold from prison into the parking lot. It is awesome, overwhelming, and frightening at the same time. Parole or probation, be damned- being granted your freedom is a zen moment, and you will be called upon to make some BIG decisions. Only YOU can make the decision to go and rebuild a better life for yourself or to return to a life that will ultimately return you to Perryville. You are at the spork in the road, and only YOU can make this life choice. Here are some helpful things to remember:

  • Don’t be afraid of a job search- feel the fear, the anxiety, and do it anyway!!
  • Don’t be afraid to ask for help – be grateful (and say so) when people provide it.
  • Give back! Give of yourself, your time, your talents, your money and your possessions to others-it will return to you tenfold
  • This is an abundant universe and the Creator will always take care of us-just ask!

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If you remember, last Thanksgiving I started the reconstruction journey with a preventative mastectomy on my opposite side and expanders inserted in my chest. I started it with deep gratitude that I was still alive and I have Medicare. Two weeks after the first surgery I had to go back in for the surgeon to remove a large triangle of necrotic skin that refused to heal. More anesthesia brain but never mind. I’m so thankful to have such a great surgeon.

After that healed, every two weeks I went in to have the expanders filled. What’s that like? Imagine being hit in the chest with a baseball bat. Oh well, the pain only lasts a day or so. The problem is, one breast was fuller than the other (radiated skin takes more to stretch);  add to the equation, one was lower than the other. Nothing fit and I wore the same two black baggy sweaters the entire winter. My friends graciously chose not to notice.

Finally in March, the last surgery. The expanders were removed and the implants put in. At my age I only wanted a small B cup, just so my clothes fit and I wasn’t lopsided anymore.  And that is what I got. It was wonderful. For nearly four glorious months, I had a 65 year old body with a 20 year old chest! I was balanced. I didn’t have to wear that big brown rubber prosthetic on my chest that feels like a heater. I was so grateful and happy.

Then two weeks ago I woke up and realized I was lying on a wet sheet. When I turned on the lights, I saw that my previously healed incision was leaking and the skin on my chest the diameter of a basketball was bright red and very hot. I knew something was wrong but told David I would call the doctor in the morning. Why are we all so stoic?

When I did call at 7:30, she immediately ordered me to meet me at her office. She took one look and said it was hospital for me. Turns out I had a very serious staph infection brought on by the radiated skin rejecting the implant. I can’t explain it but it seems to happen a lot. I spent the next two days hooked up to uber anti-biotics and Sunday night she removed the implant. I felt so sad, like I was losing the same breast twice. Thankfully, that didn’t last long. Yes, my clothes don’t fit again. Yes, my chest is lopsided and I’m still battling the infection which is now about the size of a softball, but I am alive. I am so thankful to have a wonderful surgeon and a husband that kicks into caregiver without a single complaint.

What’s next for me? I’m healing and have taken this week to rest. I feel really tired and look forward to regaining my energy. Next November, right before Thanksgiving (sound familiar) I will go in for the alternative to an implant. It’s a surgery called a tram flap, longer and more complicated but not prone to rejection. I do so want to be balanced. Nine years of lopsidedness and the dreaded brown rubber breast are enough.

With respect to Oprah, here is “what I know for sure.” There are other women who have it much worse in this breast cancer battle, especially women in prison. I know that journey. It is lonely and scary, inside even more so.  If you know anyone in the midst of the journey, hug them, send them a loving card, show them you care. It is a difficult journey, unique for each person. We all respond differently to treatment, but everyone responds to love, inside or out.

If you have a survivor story, I’d love to hear it and I know my readers would too. That’s what inspires us all to keep going.

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