Cissy Brady-Rogers
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Archive for 'death and dying'

When it comes to embodied life, there are no guarantees.

Hip replacement surgery came with warnings but no guarantees. Sadly, and to my dismay, I am one of the unfortunate ones who had complications.

My new hip feels great. It works great. I’m grateful not to wake multiple times during the night because of discomfort. I’m grateful to be walking without pain.

But, I’m hugely disappointed to have suffered nerve damage during surgery. I’ve run the gamut of emotions, from anger and “who’s fault is this” to despair when I let worry take me too far into the future living with a foot that won’t flex properly.

I woke from surgery with a mostly numb left foot and lateral calf, no flexion in my foot or movement in my toes and minimal capacity to extend/point my foot. By the time I left the hospital, some toe movement and extension had returned. The doctors said it would take time.

For a few weeks I had no flexion at all. Slowly, the numbing has eased with some flexion in my toes and ankle returning. And almost full extension has returned. For that, I am grateful and hopeful.

Nerves are slow healers. They regenerate at only 1 to 5 millimeters per day. And, apparently, they are also mysterious! None of the doctors, including the neurologist I consulted with last week, could provide a very clear or direct path forward. Multiple MRI’s and a nerve study test will supposedly get to the root of the problem so a treatment plan can be recommended.

This is not how I envisioned life 30 days after surgery. I knew I’d still be recovering mobility and strength, possibly still using ambulatory assistance. But I didn’t think it would be due to an issue with my foot.

No guarantees!

Last Saturday I led a group of 15 women in what we call “Self-Care from the Inside Out.” One participant, Yolanda, is also a breast cancer survivor with four years of life post-treatment. She laughs easily and sparkles with brightness and positive energy. We swapped stores about the limitations and complications of medical treatment. As cancer patients know all too well, at times you wonder if the consequences of treatments are really worth the hoped for outcome for survival–which, by the way, doesn’t come with a guarantee!

My friend Kerry went to Germany for naturopahtic treatment of bladder cancer a few years ago. She opted to forgo conventional “slash, burn, poison” methods (which would have included the complete removal of her bladder) and chose to pay out-of-pocket for a less drastic alternative. The treatment killed the cancer, she still has her bladder and she’s made significant lifestyle changes to enhance her body’s capacity to remain cancer free! As her husband Jeff writes in his blog about their journey, “Kerry continues to use food as medicine by aggressively pursuing a diet rich with fruits and vegetables, grains and a handful of animal or fish protein a day. Sugar is out save a glass of wine now and then. She will have to cut back on stress by trying to say no to anything pushing her beyond her limits. We know we are not out of the woods; cancer likes to come back.”

An orthopedic surgeon told another friend a few weeks ago that she needed hip replacement. She’s investigating stem cell therapy as an alternative. Of course, it won’t be covered by insurance. But a growing number of patients in the United States are wondering: Since there are no guarantees, perhaps a softer, gentler approach that works with the body rather than against it, might be a better path to explore before more extreme options are engaged!

No guarantees!

As I prepare to lead “A Contemplative Path to Health and Well-being” with Alive and Well Women this coming weekend, I’m drinking my own medicine. I’m working with the Alive and Well philosophy, principles and practices as I discern how to go forward with my foot that will not fully flex. Rather than just following conventional doctor’s recommendations based on facts about how bodies in general operate, I’m seeking clarity in what Eugene Peterson calls “the largeness” of God.

While I desperately want full flexion back and am trusting that will come, the real miracle isn’t physical healing. The real miracle is how I’m finding God in the midst of it. I’m seeing the bigger picture. Everyone suffers. No one gets out without scars, suffering and sadness.

One problem of the “miracle of medicine” is that it gives us the false hope that everything can be cured…and that we can live forever. I know no doctor ever says that. But isn’t that the burden they bear when things don’t go in the hoped for direction? Their job is to support healing. But they don’t get much training in how to cope when things go poorly or how to help people die.

Ultimately, it all comes down to Love. Love is what holds us, sustains us, guides us and helps us face suffering, disease and death with grace. Everything that comes to me is an opportunity to expand my capacity for Love–to give love, receive love and live in loving presence with myself and others. During this season here’s what that looks like:

– Letting Dave care for me, feed me, help me dress and shower, lovingly massage my foot and calf, do all the shopping, cooking and cleaning.

– Asking friends to come by to “Cissy-sit” in the first few weeks when I didn’t want to be home alone while Dave was at work.

– Letting my friends care for me, feed me, lovingly massage my foot and calf, run errands, drive me to appointments and spend afternoons watching movies with me.

– Going slowly and living a more contemplative life than I normally do when I can move more quickly.

– Being more gentle with myself and patient with Dave than I usually am.

– Not finding someone to “blame” or bring a lawsuit against because things didn’t go as planned!

And that is just the beginning.

If you’re curious about this path that I’ve spent the last 25 years learning to live and the past 11 teaching others, please visit the Alive and Well Women website for more information. We still have a few spots open for the Immersion that begins on Friday, March 31st. Perhaps one of those spots has your name on it??

 

Health, wellness, death and disease are on my mind. The new year launched, along with the usual “New Year – New You” promotions for diets, fitness programs, products and services being sold in the name of health and wellness.

As I watch January unfold, along with social media posts of friends  expressing delight with the 5.2 pounds they lost in one week working out with a new trainer or the increased energy they feel on the detox they started after the holidays, I have mixed feelings. I want my friends to be well. I want them to be in alignment with their bodies, to feel good and have optimal energy. And, I’ve seen and heard too many heartbreaking stories of people who’ve lived on the diet, fitness and wellness roller coasters, bouncing from one program to another, gaining and losing weight over and over again, looking for the answer to whatever health challenge they experience.

As I prayed about how to respond, about how to support and about how I hoped that this time it might really stick, I heard the voice of God’s love reminding me to take an eternal perspective on all these things. And, to remember that while health and wellness is important, in the long run, disease and death can’t be outrun.

I faced cancer at 30, had major shoulder surgery at 50 and am likely to have my left hip replaced this year as I hit 55. I’ve exercised regularly since junior high school, eaten lots of vegetables my entire life and don’t smoke, drink or take drugs. Disease happens anyway!

As I prayed, I got a download from the Spirit. As I went back to read it again, I felt inspired to share it here. For me, this is the Voice of Love reminding me that, as Julian of Norwich proclaimed, it is in the midst of suffering that we most need to experience that, held in God’s love, all will indeed be well.

All you have is today. You could die today. Don’t fear death. Death is not the enemy. Don’t fear disease. Disease is not the enemy. Each day’s sufferings are enough for the day. Don’t add to your burden by projecting into the future or clinging to the past. Today, this day, this moment, is all you have. Show up. Be present. Do your best. Let go of results.

Don’t fear your body. The great lie of health and wellness is that we can overcome and conquer the weakness of the body, bypass aging and never have to grow old or die. The truth is, time isn’t something to be managed, pain isn’t just weakness leaving the body and the value of external remedies and practices is limited. Health…wellness…isn’t the absence of disease but our capacity to live in harmony with ourselves and all living beings amidst the physical, mental emotional and relational disruptions that are part of life. There’s nothing to conquer, overcome, manage or fix! Our work is to be present with what is, listen to our aliveness and let decisions arise from the depths of our Inner Beings where Wisdom dwells.

Father Richard Rohr says that the entire second half of life is about letting go…of ego, of doing, of the need to prove myself, of having things my way.

There’s a lot to let go of!

We Love You Cobbs

We Love You Cobbs

This past weekend I said goodbye to a dear friend, a soul sister who has walked with me the past ten years. A group of friends surprised her family Saturday morning. We showed up at their estimated time of departure to send them off with one last outpouring of love. Some helped finish packing, others vacuumed, some stood around visiting and drinking coffee. Then, we waved them off to the great adventure awaiting them in Washington.

When I returned home, I cried.

The tears began slipping out in little bits a few months ago when Lauren first told me she was moving.

Then again last Saturday night at a going away party.

Then again at her final yoga class with me last Wednesday. At the end of class, as the rest of the students lay in final resting pose, I went and adjusted her shoulders for the last time. Then, I looked at her face, so serene and lovely, and began to cry, again.

Goodbye Soul Friend

Goodbye Soul Friend

I know the tears speak of other “letting go” experiences. Of more than just a friend moving away. They remind me of the many I’ve loved who’ve moved on, either geographically or through death. The many I’ve known and loved who are no longer just around the corner, up the freeway, or a phone call away.

When I went to my yoga mat later Saturday morning, more tears came.

Not just for Lauren, but for Colleen, for Dee, for Peggy, for Andrea and Paul, for Marsha and Greg, for Francie, for Linda, for Patty and John, for so many soul friends who came and went as I’ve spent most of my life planted here in Los Angeles.

Not just for the living, but for my mom, my dad, aunts and uncles, grandparents I never met, people I grew up with, former pastors and their wives, many dear saints we worshipped with in churches over the years, no longer with us in body.

This week, I’m most aware that it’s another opportunity to let go of the love I want and open myself up to the love I already have.

Recommended Couples Resource

Recommended Couples Resource

A still popular self-help book, Getting the Love You Want, was first published over 20 years ago. It’s a good resource for helping couples develop more supportive, satisfying relationships.

And, getting the love you want isn’t always possible, even with the ones you love.

I wanted Lauren and her family to stay in California.

I want Paul and Andy to live next door.

I wanted to have a child.

The story is complex and many layered.

We never talked about it before marriage. I just assumed we’d have children.

Three years into our marriage, I was diagnosed with breast cancer and the doctors recommended we wait five years, just to be “sure.”

A few years later, my husband, who’d been my “commando” following my diagnosis, fell into a depression. He realized he’d probably been depressed his whole life and was finally beginning to deal with it.

Once I was ready to have kids. He wasn’t.

I stopped going to baby showers or hanging out with friends who had small children. It was too painful.

He wasn’t ready to say “yes” or “no.”

A few more years passed. Individual therapy. Couples therapy. Trying to work it out.

I got older. I felt my body changing. I wondered if having a child in my forties was a good idea. And found myself in tears every month during ovulation, grieving yet another opportunity to birth love into the world.

He still wasn’t ready to say “yes” or “no.” He wanted me to be happy, but didn’t feel a strong urge for fatherhood. And, he worried, “What if…cancer came back…depression reemerged…” Images of himself as a depressed, single dad haunted him.

After years of wrestling within myself, therapy with my husband, pastoral counseling, considering divorce, and shedding many tears in prayer, I made the decision to “let go” of the love I longed for with a child of my own body, in order to hold onto the love, I already had with my husband.

Letting go of the love I wanted. Keeping the love, I already had.

It wasn’t easy. It still isn’t easy.

On days like Saturday when a community of moms, dads and kids gather to send off another family, noticing I’m the only one there without children.

On days like Mother’s day last month or Father’s day yesterday when the focus is on the family.

And, I’m grateful for the wise ones like Richard Rohr who remind me that this is the path to life. No one gets to “have it all.” And, even if we get to have it all, once we get it, we’re told to let it all go.

Many major spiritual traditions offer teachings about letting go.

The Buddha said “You only lose what you cling to.”

The twelve step tradition tells us to “Let go and let God.”

From my faith tradition, I especially like Eugene Peterson’s translation of Jesus’ teaching on letting go.

“Anyone who intends to come with me has to let me lead. You’re not in the driver’s seat—I am. Don’t run from suffering; embrace it. Follow me and I’ll show you how. Self-help is no help at all. Self-sacrifice is the way, my way, to finding yourself, your true self. What good would it do to get everything you want and lose you, the real you? If any of you is embarrassed with me and the way I’m leading you, know that the Son of Man will be far more embarrassed with you when he arrives in all his splendor in company with the Father and the holy angels. This isn’t, you realize, pie in the sky by and by. Some who have taken their stand right here are going to see it happen, see with their own eyes the kingdom of God.”

Gifts are all around us. The kingdom of God is now.

May I have eyes to see the love around me today. In my husband, family and friends, but also in my neighbors, the grocery store clerk or the kind gestures offered by strangers.

For more on letting go, check out the offerings of my blogging community, beginning with Sarah who writes with heartfelt depth and wisdom on walking with her mom through ovarian cancer.

My mom taught me from an early age about loving the unlovable: “I may not like what you do, but I will always love you.”

Usually stated after she’d blown her top in anger while trying to contain and appropriately discipline the wild child energies of my brother and I, the message “No matter what you do, you are loved” went deep into my heart and mind.

Like teenagers throughout history, while working through my adolescent differentiation process, I was convinced my mom didn’t love me. “If you really loved me…” followed by a litany of parental errors filled my mind much of the time.

- “If you really loved me, you would let me do what I want.”

- “If you really loved me, you would give me what I ask for.”

- “If you really loved me, you wouldn’t be depressed and crazy.”

- “If you really loved me, you would make the pain go away.”

- “If you really loved me, you and dad wouldn’t have divorced.”

Volatile arguments with mom marked my teen years. At times I hated her. At other times I felt deep compassion for her suffering. Most of the time I was too busy avoiding and denying the painful reality of her depression, addictions and suicidality to feel anything but indifference.

In her better moments, she did her best to guide my emerging wild feminine nature. Yet as strong willed as she was, her depressed middle-aged energy was no match for my angry adolescent intensity. Her attempts to set boundaries around my choice of friends, where I went and what I did, were sadly ineffective. I’d tell her where I was going and what I was planning to do–sometimes truthfully but most often not. She’d extend some parental guidance in an effort to do her job: “Be sure to call if your plans change.” I’d verbally assent to the plan while knowing all along she’d be out cold by the time I came home and it wouldn’t matter anyway.

As her disease progressed and I became increasingly frightened and resentful of her weakness and ineffectiveness, I acted out my own insecurities in a show of hostility. I responded with outright disrespect and at times, even contempt. I’d laugh at her and dare her to “try and make me” come home at a certain hour.  Sometimes she’d fight back with further attempts to assert her authority, but I’d respond with more venomous words. I have more memories than I’d like of calling her a “fuckin’ bitch” or other hateful things.

And yet, through it all, she’d faithfully call me back to love. Often initiating a conversation about “a new beginning” when our relationship was in more a emotionally stable place. She’d apologize for her “craziness.” I’d cry and admit I loved her and didn’t mean what I’d said. We’d forgive each other and carry on–for a few days, a week or two, sometimes longer, until our next upheaval. The message that I heard time and again:

“No matter how badly you behave, I will always love you.”

Me & Mom in a Box 1984 - Remarkable & Silly Mother

Me & Mom in a Box 1984 – Remarkable & Silly Mother

Ours was never the cozy, intimate, “best friends” kind of mother-daughter relationship. We enjoyed each other at times, laughed and had fun. But it wasn’t a sweet or easy love. Even to her dying days we struggled to love each other well through our words and actions. Yet, in the depths of my innermost being, I knew I was her beloved and precious only daughter. She loved me fiercely, deeply and strongly. She taught me to love and forgive the unlovable in myself and others.

Reflecting on our relationship, I’m grateful she died when I was only 30. Her physical passing put an end to my struggle to love the parts of her I didn’t like, to forgive the things she did that hurt me. Her limited, broken, imperfect human self no longer inhibiting her capacity to love, her goodness lives on in and through me. I see her charm, her wit, her ability to stand up among a group of strangers and speak boldly and clearly–when I engage in those ways. I see her in my mannerisms and the ways I’m physically aging.

I know she’s proud of the women I’ve become and that I’m still working on loving the unlovable in myself and others. And I am forever grateful and proud to be the daughter of Moira Deidre Ford! May she rest in peace.

I’m blessed to participate in a blogroll with a writing group. Please check out Staci’s blog for more on loving the unlovable. 

 

How to Hold it Together When Your World Feels Like it is Falling Apart – Thursday, October 23rd 4 p.m.

Join me at the Cancer Support Community of Pasadena next week to explore the powerful opportunities unleashed amidst the crisis state evoked by cancer.

My breast cancer diagnosis and treatment 22 years ago lead me on a journey I didn’t choose or want, but has shaped my personal and professional life ever since. What began to emerge in my recovery process was the new way of being in my body and life that I now pass on to others. Cancer is just one of the many challenges we will all face if we are blessed to live long enough to face a major life crisis.

We will look at how cancer diagnosis and treatment can send many areas of life spiraling out of control, including family, friendships, work & professional life, overall  health and well-being, lifestyle choices, physical intimacy, as well as religion and spirituality.  Discuss how challenges to core belief systems and values can rock your world during and after a cancer journey. Learn mindful awareness tools to help you recover your stability amidst the crisis of cancer diagnosis and treatment.

To register contact the Cancer Support Community of Pasadena: 626-796-1083.

My guest blogger today is my beloved husband Dave Rogers. We lost our 9 year old Doberman Skye to a sudden onset neurological disorder yesterday. Skye was my friend, “baby” and a wise little teacher about listening to my body, being in the moment and loyalty, among other things. This is Dave’s tribute to our Little Skye Girl.

Clear Blue Skye in her Prime sitting on Dave's lap

RIP Skye, 2005 – 2014

I was the first to see Skye (at two weeks on the puppy monitor) and to meet her (at eight weeks). But it was clear from the moment they met that Skye was Cissy’s girl. The bond between them was instantaneous and permanent.

To Skye, I was merely Mr. Fun who would chase her around the yard — and The Slave, who got up in the middle of most nights so she could go out and pee (even though she really didn’t need to).

But Cissy was the center of Skye’s life. They relished every moment they spent together, whether on solo walks at Occidental College or long love sessions on the rug in Cissy’s study. All you had to see was the look in Skye’s eyes to know that Cissy was her treasure.

In many, many ways, Skye was the perfect dog. She required virtually no obedience training. She was the perfect walker and smart as a whip. She was mellow when mellow was appropriate, crazy when it was time for craziness. She loved meeting people and her gentle face and manner reassured even shy little folks. The only imperfect thing she did was leave us too early.

Rest in peace, Skye.

Legend comforting ailing Skye

A courageous, intelligent, creative and vulnerable 25 year old woman sat across from me this morning and reminded me who I am. Half my age but filled with the same eternal wisdom of God, her eyes filled with tears as she said, “When I met you and saw your gray hair, you became my role model. I don’t want to grow up afraid of aging, of my body changing, of getting old.”

She also spoke of her fears for her six year old cousin who knows all about her mother’s recent liposuction treatment.  And, about how glad she is that smart phones weren’t available when she was in puberty. “It was bad enough without Facebook, Twitter and other media plastering my mind with airbrushed, photo-shopped images. It’s so much worse now.”

At least one prominent Beverly Hills board certified plastic surgeon reports that “a sizable chunk of his Beverly Hills patients are in their 20s, raised by moms who thought Botox was just part of a normal beauty regimen, like a pedicure or a waxing. You see a line, you get it Toxed.”

Lord, have mercy!

21 years ago a breast cancer diagnosis at age 30 became a shocking wake up call to love the skin I’m in! It transformed my attitude about aging. My wrinkles document the tears of love and laughter I’ve been blessed to experience as I’ve grown older.

I earned these wrinkles!

I’m not immune to feeling negatively about aging. Like the wise woman that sat with me this morning, I too have my moments when old ruts of negative thinking sneak up on me.

These days, when an initial wave of  “I’m looking old” thoughts and feelings hits me as I look in the mirror,  I breathe and pray, “Lord, have mercy.” I recognize the feelings and thoughts are part of being a 51 year old woman who chooses not to color my hair or “tox” my lines in a culture where that is becoming increasingly common and expected. I allow the negativity to pass through me like a wave.

Then, I remind myself of the alternative: “I could be dead!”

Hmmmm….wrinkles or death? I think I’ll choose the wrinkles!

My young colleague and I cried this morning as we spoke of our shared passion to bring a better story about our women bodies to the upcoming generations. I told her the story an African woman name Leah told Eve Ensler as she interviewed women around the world about their bodies.  When Eve asked if Leah loved her body, she replied “My body? Love my body…of course I love my body. It is my body.” Leah goes on to point out how all the trees are different, they don’t compare themselves to one another. “Eve” Leah tells her,  “you’ve got to love your tree.

May the eternal wisdom of our loving Creator that Leah embodied and testified to, that inspired our tears this morning, break through the darkness of self-deprecation and shame that so easily entangle and set us free to love ourselves as God loves us.

May we have more faith in that incorruptible, immeasurable and infinite Love, than we do in the stories of industries that want to profit off our insecurities and self-loathing.

A recent LA Times headline caught my attention: “CDC targets needless deaths due to poor lifestyle habits.” I thought of my mom and dad’s lifestyle choices. Committed smokers (mom refused to go anywhere they wouldn’t let her smoke) they both died of lung related diseases that might have been avoided if they’d quit–or better yet–never started! It wasn’t for lack of effort. I remember mom trying any number of extreme methods, including tying her pack of smokes up in a maze of rubber bands to limit access.

The CDC study refers to “avoidable deaths” as those which could be prevented by better medical care or healthier lifestyles.  Death itself is unavoidable. We all come into life with a genetic predispositions for disease that will eventually contribute to our bodies wearing out and dying. But the onset and progress of disease is complicated by many things, including: availability and quality of medical care, nutrition, activity level,  social support and geographic location. The CDC study indicates higher rates of avoidable deaths in the South. Even your zip code plays a role in how your genetic predisposition for disease manifests!

Mom died because her lungs gave out, but I bet her cholesterol levels were still healthy.  In spite of a diet consisting of a lot of butter, eggs, half & half and sugar, mom never had problems with cholesterol. I probably inherited that from her. My doctor once remarked that she’d never seen a “good” cholesterol number so high! Genetics is on my side with that one–thanks be to God (and my Irish ancestry apparently)!

Disease is part of life. Genetics loads our system for certain potentials, but lifestyle impacts how they play out. A coaching client reported that in spite of a very healthy diet, active lifestyle and limited stress in her life, she has high blood pressure. “Both my parents had hypertension, so I’m not surprised that in spite of all I do right, it still runs high.” Imagine the problems she might have if she weren’t conscientious about maintaining a healthy lifestyle.

The CDC reports that nearly one fourth of all deaths from cardiovascular disease are avoidable through lifestyle changes. But those changes could also eliminate other “needless” physical, psychological and relational problems.  Smoking, lack of exercise, poor diet and excessive use of alcohol (the primary lifestyle factors in heart disease) also contribute to limited energy, strength and mobility, depression, relational stress, isolation and feeling like a burden to family and friends–among other things.

The study also points out the need for systemic change–like improving access to quality health care and providing physical and social  environments to support healthy lifestyles for people in economically and geographically challenged locations. Other suggestions include improving community design to increase access to sidewalks and providing bike lanes, improving the local food environment, enhancing worksite wellness programs, and improving insurance coverage.

Local school breakfast options

What about improving the quality of school lunches? As my friend massage therapist and health minded mom Erin Wrutemberg pointed out when she posted a lunch menu for a local school district, “I wonder if test scores would be higher if all kids were eating real, whole, nourishing food for breakfast. Its no light bulb realization that the epidemic of childhood type II diabetes, heart disease, and obesity IS linked to diet. If your typical lower income kid who qualifies for free and reduced meals at school eats off this menu they are beginning the day at a disadvantage.”

For many people it may take a village to create and sustain healthier lifestyles. Kids who eat funnel cake and bacon cheese eggstravaganza’s for breakfast are starting out with a weak foundation for later disease manifestation.

Mom might never have quit smoking, even if she’d had a village behind her. Many of the friends she smoked with in earlier decades were able to quit when it became clear in the 60’s and 70’s that smoking was hazardous to your health.

Who is in your village and what are you doing to support health in your spheres of influence?

What small changes might you make in your lifestyle or advocate for in your community to support better health for yourself and others?

Death isn’t avoidable, but some of the pain and suffering of it’s precursors can be alleviated by small choices we make each day. May we all have compassionate wisdom and strength to make small choices now that may minimize suffering later.

Two articles from the NY Times, “No Quick or Easy Choices on Breast Reconstruction” and “The Outrageous Cost of a Gene Test” ,” expand on the themes I raised in my last blog.

As one of the plastic surgeons quoted in the first article states, reconstruction is major surgery with all the inherent risks and takes most people up to a year to fully recover.  Jolie’s seeming “easy and quick” three month recovery may leave people underestimating the risks and potential complications of mastectomy and reconstruction.

In addition to the loss of sensation and sexual arousal (even in many skin and nipple conserving mastectomies) many women have other complications including: infections and bleeding, anesthesia complications, scarring, discomfort, pain that never goes away, implants that rupture or need to be replaced…just to name a few.

When I made my choice I figured that implants were like tires–they’d need to be replaced at some point with another surgery. That didn’t sound like a very healthful option!

In fact, the American Cancer Society says that as many as half of all implants (saline and silicone) need to be replaced in 10 years. Going with that statistic, I’d potentially already have had two more surgeries if I’d chosen reconstruction. Definitely not the way I want to spend my free time!

The fabulous research assistant who sent me these links (and also happens to be my husband) said this article made him happy I’d not chosen reconstruction. Me too.

My point about the audacious ethics of Myriad Genetics (the company that currently owns the patten on the BRCA tests) is fleshed out in “The Outrageous Cost of a Gene Test.” The author, a medical oncologist who consults in the area of genetics, points out that Myriad is estimating  a profit margin of 87% on a 25-gene cancer risk evaluation that will phase out the BRCA tests in 2015.

87% profit? At whose expense? Yours and mine.

When did it become acceptable for a company to patten and profit off of genes that they had nothing to do with creating?

I am glad that Angelina stepped up and brought the conversation about breast health to our attention. She made a courageous decision in line with her own values as I did mine.

My hope is that all of us will be informed consumers of services and not blindsided by media hoopla about quick and easy answers to life and death issues.

Angelina Jolie’s disclosure of her choice to remove both breasts spurred me to share my story about deciding not to test for the BRCA gene mutation that prompted Jolie’s decision.

I was thirty years old when diagnosed with early stage breast cancer. In 1992 the options for treating my ductal carcinoma in-situ were either a lumpectomy with radiation or a mastectomy with the option for reconstruction.

I had no interest in radiation and amidst grieving the loss of my mom (who’d recently died) and my breast, I didn’t have energy to deal with the added physical and emotional stress of adding something new to my body. I choose a mastectomy without reconstruction. At the time I thought perhaps after I had kids I’d have both breasts done to match!

I never had kids, but never felt the need for reconstruction either. My left breast keeps me and my husband happy and my prosthesis works just fine for providing a matched set when needed.

At my semi-annual breast check a few years ago an associate of my dear doctor Armando Guiliano (whom I love and highly recommend to anyone seeking a great breast surgeon) suggested I consider genetic testing. She briefly explained what it involved and why it was recommended.  I asked what treatment would entail if I tested positive for the mutation. She very matter-of-factually stated “Prophylactic removal of both ovaries and the remaining breast.”

Shocked! I asked if there weren’t any less extreme options?

She said that the breast could continue to be monitored as we’d been doing but no comparable methods for the ovaries existed. She handed me some literature, said if I had any questions to let her know and left the room saying “I’ll be back in a few minutes with Dr. G.”

When they returned I greeted Dr. G. with a big hug and chatted a bit as he perform my exam. After a few minutes I mentioned the genetic testing recommendation. “Yes” he said, “we weren’t doing that when you were first diagnosed but it would be a good thing to consider now.”

“That’s all well and good,” I replied, “but if I test positive the treatment options aren’t very appealing. How would you like it if someone recommended prophylactic removal of your testicles?”

We all got a good laugh out of that, but it presses a point. As Dr. Susan Love points out  “We really don’t have good prevention for breast cancer. When you have to cut off normal body parts to prevent a disease, that’s really pretty barbaric when you think about it.”

You can be sure that if the likelihood and rate of survival of testicular cancer in men (1 in 250 men will be diagnosed with an 80-100% rate of survival depending on stage) were comparable to that of breast cancer for women (1 in 8 women will be diagnosed with a 15-93% rate of survival depending on stage) someone would have developed far better measures for monitoring and treating it than they’ve done for female cancers.

Barbaric!

I decided that even if I did test positive for the mutation, I wouldn’t remove my ovaries or my remaining breast. Since I don’t have children, like Jolie who lost her own mother to breast cancer at age 56 and said she did it so her children wouldn’t have to lose their mom they way she did, I don’t have that weighing on me. If I did, perhaps I might have made a different choice.

Beyond that, I don’t want to live in fear of death. As Joel Shuman and Brian Volck point out in Reclaiming the Body: Christians and the Faithful Use of Modern Medicine, when it comes to extreme measures of avoiding illness and prolonging life “few people seem interested in asking whether or to what extent such an aim is appropriate for creatures of a providential God.”

The additional issues of cost ($3000 which might be paid for in my case, but not necessarily) and the audacious ethics of  the only company who currently offers the testing (their patent on the BRCA genes is currently under consideration with the Supreme court) also factored into my decision.

The bottom-line question was: What difference will knowing make? Testing negative for the mutation wouldn’t make any difference to how I live each day. Testing positive might increase my vigilance about self-care and monitoring, but I already do everything I’m “suppose to” in terms of prevention.

I’ve always said that I reserve the right to change my mind about reconstruction. And I feel the same about testing for BRCA.

But for today, I am alive and well, being of service to many, and full of gratitude for the goodness of life that has come to me. If one day I decide two breasts are better than one or knowing my genetic status would give me a better life, I’ll go for it.

But until then, I’ll remain a one-breasted woman committed to living in the love of a providential God that has no room for fear of death, disease, aging, accidents, and whatever else might stand in the way of fully loving and enjoying my life, just as I am.