A breast cancer survivor shares her experiences with the BRCA gene.

Monday, March 30, 2009

1 Year Later

It's been a year since my double mastectomy, oophorectomy & reconstruction (phase 1), so time for a progress report.

My reconstruction surgeon said my right breast needed some "tweaking" since it's smaller than my left. The reason for the size discrepency is I had radiation in my right breast during cancer treatment years ago. Tissue in a "radiated breast" responds differently to surgery than a non-nuked breast. Translation: I need a larger implant.

Tip: If you must undergo radiation, ask your doctor how it will affect your breasts long-term. It's good to know for a variety of reasons.
Surgery to exchange an implant is an outpatient procedure (yaay!), but nevertheless involves anesthesia, tests, needles, blood, drains (%&#*!), nausea, and no exercise except walking for 6 weeks.

Right now, I'm not up for all the pain (from needle jabs) and suffering (from lack of food) this surgery calls for. So, like Scarlett, I'm going to think about it another day.

A small breast is no big deal. What is a big deal is that my stomach is still expanded like Demi Moore on the cover of Vanity Fair. (And that's the only similarity between my body and her pregnant one.)

I ask--what happened to "your stomach will be flat as this wall," as my surgeon swore?
Instead, after a year of surgery, when I was sliced in half, my abdomen has a small "pooch" like I'm in my first trimester.

What they don't tell you is that all the cutting and stitching of your abdominal muscles causes them to expand whenever you place any pressure on that area. Exercise, lifting & moving objects, gardening, housework...and myriad other daily activities can cause your stomach to swell. Swell, isn't it?

And, an expanded abdomen = no clothes with a fitted waist=forget summer fashions and swimsuits.

No one forwarned me that I needed to invest in maternity clothes after this procedure. From the way my surgeon talked, I was going to be a runway model at 50. (Tip: surgeons lie.)
Therefore, I enlisted the help of my French water aerobics instructor, who is also a kickboxing intructor and personal trainer.

My surgeon endorsed my decision, saying that building my core muscles were key to getting a flat stomach. NOW he tells me.

So, last Saturday at 7:30 AM, I am in Helene's basement (aka, the torture chamber) punching boxing bags, throwing weighted balls, jumping rope, doing pushups...and then going outside in the freezing rain and sprinting up the hill in her front yard. Alas, what we do for vanity.

It was then that I discovered a critical insight -- I have no muscle strength. ZERO.

After a year of surgery in which most of the time I wasn't allowed to do any exercises except walk, my body weakened overall.

This means a long, hard road before me with lots of Saturday morning sprints up Helene's hill.
But I'm up for the challenge. After all--for all the pain and suffering that Helene inflicts, it doesn't involve needles and anesthesia and lack of food.

Friday, March 27, 2009

Embracing Calm & Chaos

The call interrupted my dinner preparations, and my world immediately switched from a relaxing Sunday evening with my husband to a sleepless night of fear and agony.

My usually stoic younger brother was sobbing on the other end of the line, as he told me that my 14-year-old niece had fallen 21 feet off a ski lift. She was skiing in West Virginia with her mother for the first few days of spring break before coming to Atlanta to spend the remaining time with me. All that changed with one poor decision.

My brother was at home when he got the news. Consequently, he was receiving sporadic information from the hospital. He knew that my niece’s spleen and kidney had been lacerated, but it wasn’t confirmed whether she had suffered spinal cord or other critical injuries. I envisioned my precious niece in a wheelchair for the rest of her life, and it was unbearable.

My niece was conscious when I called ICU after I got off the phone with my brother. “Aunt Julie, I want you to come see me.” That’s all it took, and I was determined to go to her--whether her parents wanted me around or not.

Adding to the drama, my older brother (who is a pilot) flew both my younger brother and me the next morning through fog and rain to West Virginia--worrying my mother because her three children were traveling in the same small plane in inclement weather.

Fast forward to the end of the week, after spending my vacation sleeping in a recliner and eating hospital cafeteria food (is it me, or do I always seem to be spending my vacations in hospitals?) and my niece is back home. No spinal cord injury and the spleen and kidney are healing just fine. Her judgment is another matter…

I must say, this put a damper on my resolve to reduce anxiety in my life. I was so proud of myself for not panicking every time the phone rang, thinking it would bring bad news. Didn’t my niece realize this when she refused to put down the bar on her chairlift?! (According to 14-year-olds, it’s not cool to have the bar down.)

Life has a way of messing up our best laid plans.

So far this year, I’ve attended the funerals of my favorite aunt, one of my breast cancer mentors and a friend’s mother (who died of cancer). My brother has been experiencing chest pains, and my forever strong dad has suffered dizzy spells and exhaustion. I’ve also mourned a coworker with liver cancer who got the news she would not recover. I could go on, but I realize that everyone has sadness and tough situations to deal with.

While in the hospital, I read C.S. Lewis’ spiritual autobiography, “Surprised by Joy." He mentions a friend who believed in not running from pain, fear, loss and trouble, but rather, experiencing all of life to its fullest -- even the negative aspects.
When we avoid pain at all costs, we end up creating fake lives of distractions and shallowness and emptiness. He points out that even pain and rough times can offer a kind of richness…because it’s all part of the human experience.

He writes: "Jenkin seemed to be able to enjoy everything; even ugliness. I learned from him that we should attempt a total surrender to whatever atmosphere was offering itself at the moment..on a dismal day to find the most dismal and dripping wood, on a windy day to seek the windiest ridge...There was a serious determination to rub one's nose in the very quiddity of each thing--to rejoice in its being (so magnificently) what it was."

Fear doesn't add anything to our experience because it's not real -- there's nothing tangible about it that transforms you (like grief and pain) or enlightens you (like coming to terms with your faults). All it does is cast you into an altered state.

Not that I’m welcoming bad news, but it struck me that maybe I need to celebrate the joys of everyday and also, live through the painful moments I try so hard to avoid. Maybe it’s better in the long run to experience it all.

All the Rage

I took a break from blogging over the past few weeks and, instead, spent time thinking about all the anxiety and frustration that cancer has introduced to my life.

I finally hit a wall after listening to umpteen “experts” providing dire cancer predictions if I did the least thing wrong. My oncologist wants me to avoid soy. My nutritionist said red meat and dairy are cancer-producers. I’m told that exercising 40 minutes every day reduces cancer’s recurrence—so, get moving! And in the news recently, there’s a study linking alcohol to breast cancer. And, on and on it goes. It seems like everything is off-limits, including rest.

All this has brought up anger about how much I've had to alter my lifestyle over the past decade regarding things that bring me pleasure, such as:

· Gardening: Dirt + Overwork= Lymphedema
· Wine: 1 glass of Pinot Noir = Breast cancer
· Gourmet cooking: No Meat + Dairy + Soy = Limited Menu Options.
· Eating: Processed/packaged Foods = Soy=Cancer; Sugar products = Cancer Risk.
Even CHOCOLATE contains soy!

This leaves me with nuts, grains, beans, fruits and vegetables. Now, I’m all over these food choices – in fact, they’ve always been a mainstay of my diet. But to constantly hear that putting a spoonful of yogurt in my mouth, or buttering my French bread will cause my early demise…well, that puts me over the edge.

I've cut back on everything -- obeying everyone's "orders" and "rules" for my life. I eat mostly vegetarian meals and fish; organic produce. Drink gallons of water. Avoid desserts and never touch fast food or junk food. I take vitamins and exercise daily...I'm the ultimate "good girl."

While I enjoy a healthy lifestyle, I'd prefer that it be my choice rather than a requirement in order to live.

So, how does one attempt to live a calmer, less stressful life when she has all these hysterics coming after her!

My feeling is-- if I have to give up everything that brings me joy in order to stay alive, what's the point of living? (This is a rhetorical question -- I'm not contemplating dying).
This is a challenge for a lifelong Romantic, who tries to create rich experiences whenever and wherever possible.

My fantasy is to run an organic farm & vineyard along with a gourmet restaurant in the countryside. I'd be outdoors, working the land, cooking great food, connecting with people. But gardening, meat, cheese, wine—they’re all off limits! So, find another dream?

This begs the question: “What would JC do?!” (Julia Child, that is!) She’d eat a slab of meat, followed by a stiff drink. She ate (lots) and drank (lots) and was a breast cancer survivor and lived until 92. To that, I say, “Bon Appetite!”

Monday, March 2, 2009

Another Survivor's Viewpoint

The following post is by a friend, who battled lung cancer last year.

While My Shoes collected Dust . . .

Anyone who knows me knows I have an intense love of shoes…some would call it a shoe fetish.

I like to think of them as essential items of clothing--as necessary as blouses, sweaters, dresses or pants. The difference is women’s shoes are a strong expression of an individual’s personality in a way that clothes don’t always equal. (Don’t get me wrong, I love clothes, too.) So, I shopped the shoe departments anywhere I could, regardless of whether there was a great sale or not.

I recently discovered something my husband had said was pitifully true—my shoes had collected dust!

Neatly arranged in our spacious walk-in closet, my shoes sat two by two with a fine layer of visible dust on all of them. That’s when the full impact of it hit me--the “it” being the unexpected and intense ordeal of my year-long battle with cancer, including months in the hospital and then months at home recovering baby-step by baby-step.

My journey isn’t about my shoes, but they are indeed a metaphor for leaving the way of life as I knew it.

I’ve learned a lot of wonderful and surprising things along the way about myself, my husband, our families, friends and the human spirit. While the shoes in a closet might get dusty, human kindness, care, concern and love never do.

I’ve discovered that everything I’d been taught about what was important in life is true. Not that I didn’t believe it, but I hadn’t “lived” it so completely before. You believe that accidents and/or complications from illnesses are something that happens to other people…certainly, not to you or the ones you love.

Well, guess what? Not true. And if you’re the “one” it happens to, to say that you question everything you’ve ever learned about life is an understatement.

On my first trip to a mall (shoe department), when I tried on a great pair of edgy flats in a metallic color, my husband voted them out and insisted I buy the red ones. Red flats? Red wasn’t me. But when a stranger who was trying on shoes next to me agreed with my husband, I ended up buying both pairs.

New shoes mean you have new places to go and new things to do. They signified my return to life as I knew it when the concerns of the day were mundane ones. There’s one big difference though: nothing will ever be mundane again. Nothing.

When you realize that all of us take much of our lives for granted, that realization takes you to a different place. I wanted to put up billboards asking people to take a long, slow look at their lives. But, if I had seen such a billboard, would I have paid attention to it? Probably not. So, what’s my point? To inhale life deeply, joyfully and slowly.

This Spring, I’m going to put on those red shoes and let them take me into my new future. I won’t have any preconceived expectations about what it’ll be or where it’ll take me. I’ll smile at things that used to make me frown and embrace problems that used to make me run. I now know what “the bottom” looks like--and it isn’t pretty. It comes unexpectedly and, like a roller coaster, when it comes, you’d better hold on for dear life.

All of us know that in times of trouble you find out who stands with you, beside you and for you. You also find out who doesn’t. Finding out who doesn’t, was one of the many things that for a long time, I wished I hadn’t learned. But, I came to understand that finding out who you can’t count on is of equal importance as finding out whom you can.
And, while that may sound negative, it isn’t. It gives one the freedom to weed your personal garden and focus on new plantings. You view your commitment to friends in a new light, and you find yourself promising to nurture and care for them with the better understanding you have now. True friendship takes on such a different meaning.

You realize you are walking in new shoes on a different journey--and it’s a second chance. After all, how many people gain a lifetime of experiences ---- both good and bad---- in a single year’s time?
I incessantly asked the questions: “Why me? Why now? Why this?” And, it’s taken more time that I care to admit, but finally, I discovered the reason for this experience isn’t what’s important.

I started to look at all of the things I hadn’t lost as opposed to what I had.

I had to look at what I faced now, and found myself looking at a big, open blank book. One that was waiting to be filled with steps of the journey: stories, drawings, sketches, jokes, diary entries and/or anything that came to mind or came along. You’d think that it would be very exciting for a creative person like me but it was not only daunting, it was downright frightening.

I’d always had a script for my life and I’d followed it to the last detail. What do you do without your script? No one told me that my story might need a major rewrite midway through.

Realizing that fact left me suffering from the ultimate creative block. I couldn’t focus or concentrate on the very things that used to propel me forward, so how on earth was I supposed to develop that new script?

Where you do start and how do you begin? I figured a good place to start was to make a list of what I had deemed important. Next, to reflect on how my life had changed. Then, I created a second list, detailing what mattered now. That would require some serious soul-searching.

I spent long hours thinking about what I used to value. First, was my good health. Well, so much for that.

Next was my career. I had a successful one by all measures, and one I worked very hard to develop. I’d never thought about leaving my career. Now, I could scratch that off the list as well.

Tackling my second list, I realized the most important thing on both lists was my husband. Next, was the amazing support we had around us. We had no concept of how many people would come to our side. It was mind-boggling. My husband and I found out this past year that we’re only as strong as the people in our lives.

Another important discovery through my illness was the wonderful new people who came into our lives—people we’d never have met any other way and now are like family to us.

It taught me that you never know who’s looking up to you for whatever reason. Your attitude and actions can have such an impact and, often, you don’t even know it. The thoughtfulness and laughter they brought was infectious and helped heal us. They showed us by example how you can help to restore life to the living.

One of our favorite phrases now is it was one of the worst ways in the world to meet some of the most wonderful people.

I also thought about my second “career.” What shoes did its journey call for? As I began to heal physically, I became impatient over the next phase of my life. As I’d always done, I felt the urgency for a new script right away. Right now and right here. I expected myself to come up with instant answers. Wouldn’t it be convenient if life worked like that? But, a life journey takes planning, time and work, so I knew no instant answers were available.

I wish I could tell you how this new journey will unfold, but I can’t even tell myself. What I do know is that day in the shoe department, when I purchased not only the metallic pair—but the red ones as well—was a turning point for me. To try something new. And I’m going to make sure my new shoes don’t collect any dust.

A Survivor's Advice

After reading your blog, I want to tell you that thoughts of death hover for a long time after cancer/surgery, etc.

After my mastectomy, I had visions of my own funeral forever it seemed -- whenever anything would remind me of my vulnerability -- and there are lots of reminders out there.

Your last blog spoke to me and brought that all back. I want to encourage you that it does pass, so, hooray for stepping off the bandwagon for awhile.

It takes more courage to say no to things than to say yes for those of us raised as people-pleasers and blessed with talents that make that possible.

Your Friend

What I'm Giving Up for Lent

I’ve realized that I’ve been following the “live today since I may not have tomorrow” creed these days. This has translated into me cramming a year’s worth of life into each day. To be honest, I've always lived this way -- going “90 to nothing” and then collapsing. But now that I've had cancer and the constant threat of death hovering over, I’ve accelerated this mindset & lifestyle to burn-out.

My vulnerability of wanting to be loved (make that adored) and significant are what drive me to exhaustion. I try to be the perfect daughter, niece, wife, friend, coworker. Can't say that I actually achieve that, but, boy, do I try!

So, I’ve taken my minister’s sermon yesterday to heart. While others are giving up addictions like chocolate, or bad habits like texting while driving, I've decided to give up my calendar.

For the next 40 days, I'm going to live each day at a time rather than pencil in activities and commitments for two months out. I'm going to spend time in my wilderness with God – reading, journaling, meditating…having my spirit refreshed & renewed. By the way, my minister pointed out that “Lent” means “spring.” I never knew that!

It’s not to say that I won’t get together with friends, but it does mean that I’m not going to make a single commitment in advance. I don’t intend this to be my way of operating from now on – but just for Lent, I’m going to slow down, not overcommit, and listen to His voice instead of all my fears.