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

Wednesday, April 30, 2008

Great Expectations

You could say that I underestimated the extent of my surgery and recovery. Just a little. The doctors tried to warn me, but I wouldn't listen.

The surgery would take 5 hours. Uh huh. It would push my body to its limits. Uh huh. I would need the full 6 weeks to recover. Blah, blah, blah. Their advice fell on deaf ears.

I told them that I would be power-walking 4 miles by the second week. They nodded their heads...Hmmmmm. Who were they to argue with Ms. Confident?

Okay. So, surgery kicked my butt. By week 2, I was lucky to be able to breathe and walk to the kitchen on my own.

How could this be? I've been an avid exerciser for 25 years. My diet would make any nutritionist proud. I sailed through chemo-surgery-radiation seven years prior. As long as I didn't have to go through chemo again, surely surgery would be a breeze.

What I couldn't comprehend was that healing takes energy. And all the energy that fed this hyper, Type A woman was redirected toward my healing process.

I had even made a "to-do" list that spanned 3 pages in my notebook. After all, I couldn't imagine sitting around with nothing to do for 6 weeks. All that I could accomplish during this time -- like renovate the house, re-landscape the yard and write the great American novel. Not to mention, provide a solution to world peace. I ended up accomplishing zero. Zero.

So, now you know. The greatest advice I can give anyone who undertakes this surgery is to be realistic and be prepared. Because I wasn't realistic, and I wasn't prepared. But my friends were.

My friend, Tammy, became the point person to assign all tasks. Friends signed up to bring me meals. Meals? I balked. I was a serious cook and was planning to go through my Bon Appetite cookbooks and try new recipes (in the midst of my home renovation, of course).

For the first week after surgery, I rejected all forms of nutrition. The pain medication, along with my nausea and exhaustion, removed any appetite. But after a week of not eating, all of the sudden, I found myself ravenous. My body ached for sustenance, and my friends showed up with home-cooked, over-the-top meals. I couldn't believe my appetite. I ate everything that moved. The dog hid from me.

I learned from the recovery period that your body craves the following: food, rest, pain management and exercise. It demands these things immediately and intensely, so you spend your time & attention taking care of those basic needs.

Even more, you need the help of others more than you realize, and it takes humility to be served. Ego, arrogance and pride can get in the way of accepting a gift. So, push yourself out of the way and accept the kindness of others. You might be surprised at the result. You will feel greatly loved and valued...and this aids, as well, in the healing process.

Tuesday, April 29, 2008

Every Day

Every day, I think about life...and death. Every day.

There's not a day that goes by in which I don't look up at the sky and thank God for giving me another day of life. Each day, I drink in the surrounding world. Each day, I know what I want to accomplish. Each day, I determine who I want to connect with. I realize that each day is all I have. And that's when I think about death.

I'm more aware than ever these days of people who are sick or suffering or dying. I'm sure it's, in part, because I'm middle age that I'm more sensitive to how vulnerable we all are. Facing your own mortality also awakens you to death being imminent, and possible at any moment.

I wasn't always this way. I was a planner. I made elaborate goals and set time tables of reaching them in a year, 5 years, 10 years down the road. It was hard to concentrate on the present. I was too focused on the next trip, the next job, the next adventure. As a result, I reached many of my goals: Study photography! Climb Mt. Kilimanjaro! Secure that promotion!

Goals are fine. But they aren't necessarily the end-all, be-all. In fact, sometimes, they get in the way. They don't substitute for the daily routines and nuances that bring meaning and substance to who we are and our significance.

You know the question that gets asked in various circumstances -- whether it's a work retreat or a church sermon or a girls' getaway weekend -- what would you do if you had only one year to live?

Well, when you are truly faced with the reality of that question, you may be surprised at your answer. Given one year to live, I always thought I would take off and see all the exotic places around the world.

However, when I was diagnosed with Stage 3 cancer with no guarantee that treatment would save me, I received clarity quickly and powerfully. My day-to-day existence meant more than I had realized. Simple things like the wind moving through the trees. A hot mug of coffee first thing in the morning. Taking a leisure walk at sunset. Snapping butter beans on a screened-in porch on a summer afternoon. Wading in a cold, North Georgia trout stream. Receiving a hand-written letter.

Then, I thought of the people who enriched my life. I wanted to see my 6-year-old niece grow up and have an impact on her life. I wanted to build a solid marriage with my husband (we were newlyweds at the time). I wanted to experience an adult friendship with my parents and be there for them in their old age.

Recognizing what really mattered set me on a different course. Since cancer, I now take pleasure in the ordinary-- whether it's selecting basil at my favorite nursery, or going birdwatching with a teenager on a Saturday morning, or laughing with my 94-year-old great aunt on the phone.

If I reach another goal or fulfill a long-held dream, then yay-rah. But if I never step far away from my home or achieve anything noteworthy, I will still take joy in celebrating each day. Because connecting to the people I love and carrying out the tasks that make up daily life is enough for me.

One more thing. People ask if I'm mad at God for getting breast cancer. While I admit that cancer is an overwhelming ordeal with terrifying consequences, it's not like I'm the only one who's going to die and no one else is. I'm just more aware of my short life span on earth because I've had to face the reality of death sooner than later.

My friend, Casey, pointed out that every breath we take is a gift from God.

Tuesday, April 22, 2008

Hear Me Roar

Once upon a time, there was a doormat. Everyone walked and stomped on top of her. But then she got breast cancer and had to fight for her life. This meant battling lots of snotty-nosed employees in hospitals, labs and doctors' offices. But along the journey, she found her voice and made it heard. And now she won't shut up. The End.

When you become a professional patient as I, you come into contact with all kinds of personnel in the medical field. What I've observed from my vast experience during these past 7 years -- which has included 4 major hospitals, more than 10 physicians' practices, and too many healthcare labs, pharmacies, insurance companies and parking lot attendees to count -- I'd like to pass along to you.

For the most part, doctors and nurses and other healthcare professionals show compassion toward patients. Every now and then, you come across a Witch Doctor, but all in all, I've been fortunate to be under the care of amazing people who love their work and are genuinely concerned about the patients they serve. That's why many say they entered the medical field in the first place -- because they wanted to spend their lives caring for others.

And then...there's another group who could care less about humanity. They are known as"office staff." They choose their line of work because it offers convenient hours or is close to home or provides benefits or assigns easy tasks that are not too taxing on the mind. Patient care is not their forte -- nor do they want it to be.

The reason I bring this to your attention is because it is often the office staff who ends up playing a critical role in your care -- as they control scheduling, passing along information, helping with insurance issues and keeping track of your medical records.

A doctor can be the best in his or her field, but if their office staff is incompetent, you've got a problem. A big problem.

When I first found a lump in my breast, I followed up with a mammogram 2 weeks later. Nothing out of the ordinary appeared on the mammogram, but because there was definitely a lump, I was told I needed ultrasound.

That required going through my physician's office for another referral and scheduling. The challenge was, I could never talk to my physician directly. He was too busy. The only person I had contact with was his office manager, who relayed my information back and forth between the doctor and me. I was so naive.

The office manager assured me that my doctor didn't think there was cause for concern, and the soonest she could schedule an ultrasound was 2 weeks later. When I pushed for an earlier date, she wouldn't budge.

Two weeks passed and I had the ultrasound, which showed a mass. Then, I was told I needed a biopsy. Back to my doctors' office, where I dealt with The Office Queen. Again, she was in charge of the referral for a surgeon. And, of course, the soonest the surgeon could see me was 2 weeks later. Another wait.

From the time I found my lump to the time it was biopsied and found to be malignant (stage 3, to be precise), it had been a time span of over 6 weeks.

You are probably wondering why I let this go on for so long and didn't demand better service. Like I said, I had never had to deal with doctors' offices and labs on this level before, so I didn't know what to expect. But when I was told that I had an "aggressive form of cancer" and that it had spread rapidly -- in a period of a few months -- I got angry. Very angry. There was no telling how much the 6-week wait cost me in terms of my cancer's advancement.

Anger brought out my voice. And, believe me, every office employee has heard it ever since. Don't get me wrong. There are some nice people out there. In fact, I am quick to speak up about those who go above and beyond by writing letters of praise to hospital CEOs and physicians. I've even sent cards and presents. Because when you are vulnerable, you are truly grateful for their help and kindness.

At the same time, I also don't accept mediocrity when it comes to my health. And that's what, most recently, Irene had to learn.

Irene was the executive assistant to one of my surgeons. She ran a tight office, I could tell. But she knew nothing about patient care. I discovered this the day of my pre-op, when my physician's orders had not arrived at the lab, resulting in confusion and problems that I won't go into. I called Irene to let her know about the mixup. She ripped into me.

At this point, I had not eaten or even had a sip of water for hours on end. I had had a lot of blood drawn. I was tired and nervous and extremely thirsty. Nasty Irene sent me completely over the edge. There I stood, bawling...in front of my mom, the nurses and an entire waiting room of strangers.

When I reached my surgeon's nurse and told her the situation, she immediately resolved it and conveyed her apologies. Something Irene could have easily done herself. Furthermore, I found out that Irene was mean to other patients...but their weren't speaking up and complaining.

Well, Irene. In journalism school, they say, "The editor always has the last word," and Irene didn't know who she was dealing with. I wrote a speech. I wrote a treatise. I wrote Beowolf II.

I told my surgeon that Irene was a disadvantage to his marvelous practice. That she shouldn't be working in a place that required patient contact. People like Irene should be working at a company that didn't care about customer service at all -- like an airline, for example. Anywhere, I said, but a doctors' office.

So, there, Irene! Take that!

Unfortunately, I wrote the letter before I found out that I was going to have to have a second operation...with the same surgeon. Which meant I would have to deal with Irene again.

Nevertheless, I will continue to speak up and speak out. So, watch out, Irene...and everyone else who messes with me. Because breast cancer teaches you to be appreciative, but also to roar when you need to.

Tuesday, April 15, 2008

The Real Cancer

This morning I attempted to have a devotional and it was quite challenging reading the Bible on medication, I can tell you. I found myself reading the same verse over and over and as a result, something sank into me.

I was reading in I Peter about being "reborn," and while I know that so many people today make fun of the term"born again," it really is about the transformation of our being -- shedding the darkness that haunts us and allowing us to be free to be the person we were intrinsically made to be.

It hit me as I looked at my exterior right now and how my body has been all carved up to remove any possible traces of cancerous tissue. That's essentially what spiritual transformation is about -- carving out the cancerous stuff inside of us that holds us back from living our lives fully.

I hope that this experience will not be in vain for me - that while I'm relieved to have potentially bad tissue removed from the outside, I hope I will experience an inward transformation as well of removing the garbage I see on the inside.

Of course, I still cannot promise I won't have meltdowns from time to time. One can strive for only so much...

Sunday, April 6, 2008

Getting By With a Little Help From My Friends

I've never tried Match.com -- which is good, since I'm married, and Gary takes a dim view of this sort of thing -- but I understand you have a chance to get to know someone via email before meeting them in person. That's what has happened lately between me and a young woman named Alicia.

A mutual friend connected us since I was going through my BRCA ordeal and she was going through breast cancer treatment. She and I shared a similar diagnosis (stage 3) and treatment (surgery, chemo and radiation), and she just finished her radiation treatments last week. Hooray!!

The difference between Alicia's situation and mine is that she is only 34 years old -- so terribly young -- and, she's getting married next month. Did you read that correctly? NEXT MONTH!

All to say, I don't know Alicia that well (obviously, since we've never met); however, I can tell you that she is a much deeper and more profound person than I.

Gary will tell you there's no way in the world I would have gotten married right after I had completed cancer treatment. My vanity has always overruled lesser things like love and commitment.

At the end of cancer treatment, you're bald, lacking eyebrows & eyelashes, and chocked full of steroid weight. As Alecia quipped: "With cancer, you lose everything but weight." How true. I also lost my sense of humor...

What's more, it takes months and months for your body to recover from all the battering it's suffered. There's the lingering taste of chemo (a metallic taste) in your mouth. There's the washed out, death-like skin tone. And, there's the total lack of energy.

Yet, at the end of her treatment, Alicia is getting married. And she's upbeat, funny and full of life. And brave. She's amazing.

Don't get me wrong. I've never set eyes on Alicia. She's probably drop-dead gorgeous. (She lost 2 feet of blond, curly hair that reached the middle of her back, so I'm envisioning her looking like a supermodel.) I'm just saying that anyone who goes through the cancer process arrives at the end looking like Jonah after he was thrown up by the whale.

And then there's Alicia's fiance. Now, I will have to say that Gary equals Alicia's beau when it comes to being Prince Charming. Gary told me every day that he loved me and that I was beautiful and I was the best thing that ever happened to him. Alicia has a Gary in her life, as well. What Alicia and her fiance possess is real love. Anything less, as far as I'm concerned, is the dating game.

After our few interchanges, I feel like I have a new friend. To get an idea of how special she is, this is what Alicia wrote me, a total stranger, in her first email:

I want you to know that I am here to support you-- sometimes it helps to be able to talk with someone who knows the "real deal" and won't candy coat things. It is not easy-- as you know-- and you can fight this thing and get through it! It is an emotional and personal battle and roller coaster every day-- some are easier than others-- keep your spirit and hope up-- remember tomorrow does get better. (It is too difficult to envision a month out some days- but in a month it is even better...) You know everyone's experience is intensely personal and is really individual-- no one had the same experience-- which really is not all that helpful in terms of what to expect for you-- it is helpful though to be able to vent/ question/ and mentally prepare with someone who can relate pretty closely.

This is what it's like with this disease. You connect quickly, easily, intimately with other survivors. And that's what gets you through this hell -- having someone who understands on the deepest level all the horrible and embarrassing and painful and scary stuff you have to deal with. And they commiserate and make you laugh and allow you to vent. And they hold your hand when you need it...to let you know you're not alone. That's what helped the Cowardly Lion through the haunted forest...friends to hold his hand. And empathize, because they had to walk through the scary places as well.

Having another survivor reach out to you is extremely powerful. And comforting. That's what Alicia has done for me today.

On a final note: When I arrived home this afternoon, I found a voice message from my friend, Patsy, awaiting me. She said she was confident everything was going to turn out okay for me. After all, she reminded me, only the good die young. She has a point. I can now rest easy.

Saturday, April 5, 2008

Why I am a Cowardly Lion(ess)

I feel great. I'm full of energy and verve. (That's what lions have, you know.) I also look healthier than I have in years...glossy, thick hair and radiant skin. Surely, this means I have cancer.

Pessimist, you say? Not at all. This is the way I felt and looked when I was diagnosed with breast cancer 7 years ago. You know the 10 warning signs of cancer? I had zero. Zero.
Everyone thought the lump I had found was a cyst. It wasn't.

Please excuse me while I skip ahead of my BRCA saga for the time being because I want to express how I'm feeling at the moment. Which leads me to why I'm a Cowardly Lion(ess).

But I promise to return to my BRCA ordeal in case any of you think you might be a carrier of this gene-- or if you simply want to know what's involved in getting a boob job and tummy tuck. It's the same operation either way. (But, you get far more sympathy and meals if you're having surgery because of BRCA rather than a boob job.)

I was sitting in Dr. Zen's office a few weeks after my operation for a follow-up appointment, when he told me that I was one lucky girl. That's me, all right. Lucky. With slashes all over my abdomen and other lingering surgery side-effects, which I'll spare you the details of.

"Lucky?" I asked. Well, yes I was. Apparently, they found pre-cancerous cells on my fallopian tube. If I had not had the operation when I did, he said, it would have been an entirely different scenario 6 months down the road. That's the problem with ovarian cancer, remember? It lurks beneath the surface and quietly spreads, disguising itself as symptoms related to other illnesses. By the time it's finally discovered, it's often too late.

Whew! I thought about how I originally dismissed being tested for BRCA. I also thought about the timing of my surgery. It was up to me to schedule it, and I wanted to get it over with immediatly instead of postponing it. Both of those decisions ended up saving my life.

Yes, I felt very lucky, to say the least. But, doctors have a way of giving you about 3 seconds to feel euphoric before they drop another bomb on you. That's when Dr. Zen said he was going to have to open me up again and take out my uterus. (In the last operation, he only removed my ovaries and fallopian tubes since I was also getting a double mastectomy, and it was too much strain on my body.)

He added that my second operation had to be scheduled as soon as I could have surgery again -- in 3 months. THE MAN JUST CAN'T KEEP HIS HANDS OFF MY BODY!

To make matters worse, I saw my oncologist (a.k.a., the Drug Pusher) the next week to discuss the surgery to remove my uterus. She narrowed her eyes and advised me to "emotionally prepare myself" for chemo again, if they ended up finding cancer. That would mean 5 months of chemo + steroids. Again.

Isn't having to endure poison once in your life enough? But, twice?! (With all the pharmaceuticals they're finding in our water supply these days, you would think that drinking tap water would be enough.) I decided I would just wear a "Say No to Drugs!" t-shirt the next time I saw my oncologist.

So, this is why I am a Cowardly Lion(ess). All my friends thought I was so brave going through the BRCA operation like I did. But that was pre-emptive (avoiding cancer) and the next one is exploratory (looking for cancer). There's a big gulf between the two. And I'm petrified.

That's why I relate to the Cowardly Lion. Because he wanted courage so badly that he faced his fears and kept going...despite the impending pain and misery it would entail.

Courage was his birthright, and he wanted to claim that in the same way that I want to claim my birthright of fully being me and fully alive.

But to achieve this wish, the Great Wizard (Dr. Zen) told him the horrible news: "Bring me the broomstick of the Wicked Witch of the West!" ("You have cancer! You must undergo chemo!") It's enough to make a feline jump out of a window. (Sam, however, doesn't have to worry about me since we live in a one-story house.)

The Cowardly Lion endured...in spite of it all. He had to walk through a haunted forest. He had to fight off nasty, flying monkeys. He had to face down a green woman. All the while, trembling and crying and holding his tail.

The Bible talks about our journey to claim our birthright--which is recapturing who we were intrinsically made to be in order to live the lives we were meant to live. And the only way we obtain our birthright is through storms and suffering. That's essentially the story of Joshua. In order to claim the Promised Land, he had to fight the giants.

There's an expression the Bible uses when people decided to fulfill their destiny despite their greatest fears. It's "Setting your face like flint." Flint is one of the hardest minerals there is. It's unbreakable. Unshakeable.

I'm reminded of my favorite quote that I've held onto whenever I've been scared. It's by Helen Keller (and I paraphrase):

Security is a Myth. It doesn't exist in men or nature....Life is either a Daring Adventure, or Nothing at All.

So, I am going forward...trembling and crying and holding my tail. I'm going to have to enter the haunted forest and fight off nasty monkeys and maybe even face a green woman along the way...all because I want life. And I know this is what I've got to do to grasp it.

Friday, April 4, 2008

A Flurry of Furies

When I announced my news to my friends, a flurry of emails ensued. The leader of the pack was my longtime loyal pal, Tammy, who volunteered to be the point person for all communication. That kept me from being inundated with calls in which I had to repeat my information 10 million times.

She also set up schedules for meals, errands, dog walkers, hospital sitters and spend-the-nights. (Gary was supposed to be overseas for work during part of my 6-week recovery.)

I typically spend one-on-one time with my friends, so I was unprepared for the amount of energy, excitement, power, resolve and stamina of all of them collectively. Wow! I never realized I had my own set of furies to protect and guard me against all evildoing.

Emails were fired back and forth, with suggestions, comments, questions…and a few snippy remarks. (We’re talking about very strong personalities here.) Together, my friends could solve world peace. But at this point, they were solving my crisis. World peace would have to wait.

Frankly, all this attention embarrassed me and I felt like it was overkill. After all, I am Type A, strong-willed and high-strung, and surely didn’t need all this help. My parents lived close by and my husband would be on hand for most of the recovery time.

I called a few people in the group to express my concern…and each one pretty much told me to shut up and do what Tammy instructed. My friends, apparently, are more Type A than I.

Tammy, meanwhile, was masterfully fielding phone calls and emails, dispersing information, organizing schedules…and making homemade fudge for Gary, since she knew he loved sweets. Everyone needs a Tammy in their life.

Tammy is naturally a giving person and is always buying gifts & flowers for friends who are having a bad day, or helping throw children’s parties, or taking little old ladies to the grocery store. She also lost her mom to breast cancer when Tammy was only 24, so this disease has had a devastating impact on her life.

Finally, schedules were made and meals were assigned and hospital sitters were appointed and I was set. My friends were planning to carry Gary and me through this entire process so we wouldn’t be facing this alone. That kind of support is what gets you through tough times like this. Gary also reminded me that payback was going to be hell.

What’s more, I discovered that I was linked to an amazing prayer network. Not only friends offered their prayers, but they added me to lists that extended multiple states away. One friend even put me on a prayer list at Christ Church while she was visiting Oxford England. No word on the Pope at this point.

I was especially touched by people willing to pray for me. Not only because I believe in the power of prayer, but also because I’m a lousy pray-er myself, so I know what a sacrifice it is. It’s not that I don’t want to pray, but when I do, my mind drifts to making grocery lists or figuring out which plumber to call to fix the kitchen sink. So my prayers most often go on a tangent. After I found out about all the prayers being lifted up for me, I resolved to do much better in my own prayer life.

I didn’t realize it at the time, but I was going to need prayer this year more than I knew.

Email Exchange

-----Original Message-----

From: Julie
Monday, December 10, 2007 12:05 PM
To: Anne
Subject: update

Nerves are shot. Think I have all the symptoms of ovarian cancer and am playing the waiting game of doctors’ offices returning my calls…

-----Original Message-----
From: Anne
Monday, December 10, 2007 12:07 PM
To: Julie
Subject: update

No, no……. you want to go eat????? I’ll pick you up.

-----Original Message-----

From: Julie
Monday, December 10, 2007 12:07 PM
To: Anne
Subject: update

I’m going to hit the gym for lunch since I’m completely wired and need to work off all this stress and anxiety.

Gary & I had a discussion over the weekend about his future when I’m not around…

By the way, it must be a requirement for women who work in doctors’ offices to be a witch.

-----Original Message-----
From: Anne
Monday, December 10, 2007 12:07 PM
To: Julie
Subject: update

Promise you’ll call me after you work out. Oh, and never fear… I’ll marry Gary...

Thursday, April 3, 2008

Of Butts & Breasts

I hadn't had this many men try to get me naked since college. Every time I turned around -- whether it was a doctor's visit or a test -- I was having to take my clothes off.

After I received my results right before Thanksgiving, I began researching surgeons to discuss my options. I needed to locate a team of 3 surgeons who regularly worked together: breast surgeon (to remove my breast tissue), ovarian cancer surgeon (to remove my ovaries) and plastic surgeon (for breast reconstruction).

From my experience with breast cancer, I found the best way to choose a doctor was by tapping into my trusty network.

I knew exactly who to call -- a breast cancer survivor who had had a mastectomy & reconstruction and was heavily involved with fundraising, and well-connected to the breast cancer community.

She didn't hesistate. "Dr. Bill. He's the best in the business. I'd go to no one but him." Dr. Bill apparently helped develop the "tram flap" in the 1980s and was widely sought for his expertise.

A tram flap is a procedure in which they essentially cut out a section of your stomach (or back or back of your thigh) and remove tissue-fat-nerves-vessels and transplant that under your breasts, where the breast surgeon has removed all your original breast tissue.

They've come a long way in breast cancer surgery & reconstruction. The breast surgeon goes underneath your skin and removes the tissue and the plastic surgeon replaces the tissue with stomach fat. (They professionally stuff your boobs -- kind of like you did with tissue paper when you were a pre-teen. Admit it! You've done it!) So what you end up seeing are your same breasts, but shaped better. In fact, I've taked to many women who like their breasts more after reconstruction compared to their original tattas.

The problem was -- and there's always a problem with me, it seems -- I didn't have much stomach fat. I did, however, have lots of butt fat.

There I sat in Dr. Bill's office, trying to convince him why it was necessary for me to have a "butt transplant" rather than a stomach fat transplant. But, he said it wasn't as effective and assured me the stomach was the way to go.

He did agree that I didn't have much stomach fat. (He also agreed that I had a big butt.) Therefore, I was also going to need implants to fill out my breasts...which, he added, would end up still being smaller than their current size.

I have always had small (I prefer to say "perky") breasts, which I have been fond of. But reducing my size any more would put me in a training bra.

This was always my luck. All I ever wanted was a smaller butt, but, instead, I was getting smaller boobs. And smaller boobs were only going to make my butt look bigger. Why God didn't create "butt cancer" instead of breast cancer is beyond me...

My next appointment was with the ovarian cancer surgeon, whom I had interviewed for an article a few years before. (Did I mention that I was a writer?) Anyway, I wrote a story on Dr. Zen and the next time I see him, he's staring at me with my legs in stirrups. I decided to take note of this situation before I ever did a story on someone again.

The third surgeon was a woman -- thank, God! -- named Dr. Jen, who was highly recommended by several of my girlfriends with "breast concerns." And, fortunately, Dr. Bill, Dr. Zen and Dr. Jen all worked together regularly as a team! Will miracles never cease?!

During this time, I had a scary mammogram in which there was concern that some calcifications near my breast wall were cancerous. That led me to minor surgery to remove the tissue in question using stereotactic mammography (not fun).

During my exams, I also read through the list of potential ovarian cancer symptoms...and saw that I had several -- swelling of fingers, lower back pain, abdominal pain, bloating. Of course, many of the symptoms could be related to hormones, but when you're a cancer survivor, all you think about is cancer, not hormones.

When I discussed this with Dr. Zen, he assured me that I had checked out okay and there was no need to fear. However, my nerves were shot, and I told him that as far as I was concerned, he could yank out my ovaries right then and there with his bare hands.

He looked taken aback. "Well, that's not necessary," he stammered.

After surviving cancer the first time, I've been tested every 3 months over the past 6+ years -- whether it's bloodwork at my oncologist's, or a mammogram, or an MRI, or an exam with my breast surgeon. And every 3 months for 6 years, I've had to wonder after each test...did they find anything? Is it back? I wanted to put an end to the wondering.

With the BRCA surgery of removing breast tissue and my ovaries, my chances of developing cancer again would significantly drop. To be able to have that kind of relief -- and live life without cancer hovering over your head every day (and it does, believe me) -- was motivation enough for me to get on with it.

I signed up for the 3-in-1 surgery as fast as I could. Ant then began preparing.

Wednesday, April 2, 2008

A Family Affair

When I conveyed the news to my family, they tried to decipher the information the best they could. After all, the BRCA gene is a fairly new topic these days--yet to be the buzz at the cocktail party circuit.

Besides the dilemma in deciding my next steps, the news also impacted my parents and my brothers.

One of my parents was obviously the carrier, and the more critical person to be tested for the gene was my mom since, if she had it, she would be at high risk for breast and ovarian cancer. It would also mean the gene would be passed down through her entire side of the family.

My brothers were also potential carriers, and if they were, this could affect their daughters. But no one budged. Mom saw no reason to test at her age, and my brothers said their daughters weren't old enough to develop breast cancer.

Note: Once the genetics lab establishes your profile, it's easier to test relatives since they know the specific mutation to look for. Consequently, the test is only a few hundred bucks versus thousands. And the results are not reported to health insurance companies (unless your insurance company is paying for it, of course)--so, it's totally confidential.

After reviewing a brochure featuring photos and illustrations of what my impending, preventative surgeries would entail--and how my body would be hacked up 50 million ways -- Mom became angry and suspicious. She didn't want me to be a guinea pig for my physicians. I wasn't too keen about the procedures either at this point. Dad found a newspaper article that reported the consequences of the BRCA test were overstated.

Underneath Mom's concern, though, was a nagging feeling that, in some way, she had contributed to my cancer--commonly known worldwide as "mother's guilt."

Her email to me made me realize her pain:
"We love you and hope this will be over soon without too much physical agony and discomfort. As the ones who brought you into this world,we feel every pain you have and every disappointment, and happiness."

Meanwhile, my oncologist asked me if Mom had been tested, and I explained Mom's reaction. So, Dr. Kay asked me to have Mom call her, which Mom eventually did. After they talked, Dr. Kay ended the conversation by saying that I was like family to her, and she wasn't going to let anything happen to me. This meant a lot to Mom and helped reassure her that my doctor's last name wasn't Jekyll.

But it wasn't the conversation with Dr. Kay that actually changed Mom's mind. It was because she called all her friends and asked their opinion, and they convinced Mom to get tested. So she did.

The results of Mom's test came in...and she didn't carry the gene mutation after all! It was Dad's fault! Of course, I could have told you that to begin with--those people from Alabama...

Once Dad was caught red-handed as the carrier, he seemed to recall that his father's half-sisters had all died of cancer. Hmm...

But I don't blame Dad for passing along the breast cancer gene to me. I blame him for giving me thick ankles and a big butt.

Tuesday, April 1, 2008

The only genes I'm interested in are premium denim

I am a 7-year survivor of breast cancer and now know that I carry the BRCA-1 gene mutation. This has enormous implications, none of which fit into my birthday plans of celebrating 50 this year.

I must go back to last July, when my oncologist--that overly protective, obsessive little vixen who is constantly advising me about exercise (do) and soy (don't) and stress (lower) and estrogen (avoid)--brought up the issue of me getting tested for this wayward gene. She told me the BRCA gene often surfaced in younger women who were diagnosed with breast cancer under the age of 50. And since I had had breast cancer at 42, I qualified. Lucky me.

I mulled over her suggestion for about one second, and then dismissed it. After all, when I was first diagnosed, my surgeon (who sat on "the" major cancer board that determined these sort of things) said my cancer wasn't due to heredity since no immediate female relatives had breast cancer when they were pre-menopausal -- a key indicator. The other doctors agreed my cancer was simply the (bad) luck of the draw.

It was also difficult to trace breast cancer in my family since males outnumber females. I have no sisters, no aunts and only one great aunt, who lived well into her 80s. I don't know how Aunt Thelma died, but I expect it was associated with her poor fashion choices. (She appeared at a family funeral with stop-sign red hair and a plunging neckline showing off her ample bosom. She was over 80 at the time.)

To confuse the matter, my paternal grandmother did have breast cancer, but she was almost 70 when she was diagnosed, lived off country cooking with loads of lard, and sucked in second-hand smoke every day of her marriage since my grandfather had been smoking since childhood. You've probably guessed that my family is Southern.

Even with a lifelong unfiltered cigarette habit, my grandfather lived until his seventies, and didn't die from cancer. And, here I was with stage 3 breast cancer at 42 and had NEVER lit a match for anything other than a candlelight dinner. Maybe I was living too clean a life.

But I digress. Two months later, I was in my gynecologist's office for my annual visit. When I brought up the BRCA matter, she jumped all over it, telling me that if I carried the gene mutation, then my chances of developing ovarian cancer were significant--so high, in fact, that I was "good as dead."

Furthermore, she pointed out, there were NO effective screening measures for ovarian cancer (like there is for prostate cancer) until it's in later stages of development...and then, it's often too late.

After this tidbit of info, I decided, why not? So, I set up an appointment with a genetic counselor to help me discover my fate.

During the visit with my counselor, Clarisse, she pulled out an enormous notebook and placed it on the table in front of me. She began flipping through the pages, giving me a refresher course on DNA...which was good since I had no recall from high school biology, when I was more interested in the hot guy sitting next to me in class than on cell formation. When Clarisse finished her lecture, she sketched an outline of a tree. Then it was my turn to fill it in with family members dangling from the branches.

Unfortunately, I know less about my family tree than I do about DNA.
In case you're wondering why I didn't come prepared--especially, since we're dealing with my fate here--it never occurred to me to bring along any family documents or quiz my parents before the counseling session. I must add that I was keeping my BRCA testing a secret from my parents, since their nerves have never recovered from me having cancer in the first place.

Therefore, trying to remember who needed to be included in the tree and on what branch--or even their correct name--was a significant challenge. I had to rely on my fractured memory.

You would think that since my mom had been taking geneology classes and conducting extensive research on her ancestral line for several years, I would have gathered a fact or two. She's traced her family up and down the East coast and as far back to the Mayflower, and presented each of us kids with a folder containing graphs and charts, and even a matrix (with a pop quiz at the end). But, I confess I never paid attention to it -- and frankly have misplaced it somewhere in my house -- because her family seemed quite dull. I ask you, would you care to read about a great aunt whose claim to fame was having perfect Sunday School attendance for 90 years?

Dad's family, on the other hand, was another story. While Mom's great aunt was garnering Sunday school merit badges, the story of Dad's great aunt was of her getting drunk off whiskey with her first cousin, and proceeding to shoot ice cubes up each others' skirts while sitting on the kitchen floor. Well, they were from Alabama, after all...and if you're from the South, you have at least one of those relatives. As my friend, Cheryl, puts it: "Every family has a skeleton in the closet, but we Southerners parade them out in front of everybody."

Despite Dad's interesting family lore, he knew little about his ancestral ties--as evidenced by the fact that we still have to remind him of his grandmother's first name (Della.)

Somehow I filled out the family tree, however, it looked somewhat drought-stricken. Clarisse said it was sufficient, but I think she just said that because she was growing tired of the whole process with me.

After that, all I had to do was Fed-X a vial of blood to Myriad Labs in Utah, the only lab in the U.S. that conducts BRCA gene testing. I was told I'd receive the results in three to four weeks. I also discovered that my insurance would pay for the testing, which is good since it's around $3,000...
My oncologist told me that if, in fact, I ended up carrying the gene, I would need to undergo a double mastectomy and a hysterectomy. Surprisingly, these prophylactic operations are much cheaper than cancer treatment, so insurance also tended to cover the cost of them.

A few weeks passed and I didn't think much about the test since I was convinced I was not a "carrier." Then, late one Friday afternoon, Clarisse left a message on my home phone, which I didn't retrieve until I had arrived from work at 6 p.m. Her message stated that she had the results, but was leaving the office for the weekend and for me to call her on Monday.
Unfortunately, I was scheduled to fly to Buenos Aires the next day for a 2-week vacation...so my news would have to wait.
When I returned 2 weeks later, now Clarisse was away on her delayed honeymoon. Is it my imagination, or does it seem to take an Act of God or Act of Congress to get vital information when you need it?

While Clarisse was off honeymooning, my husband, Gary, and I attended a wedding with my parents. We were sitting around chit-chatting after the wedding, when Mom happened to mention that her two first cousins both died of breast cancer at very early ages. I stared at her, aghast, and said, "NOW you tell me!"

Mom didn't understand why I overreacted until I fessed up about being tested for the BRCA gene. All to say, with this new insight, I took this testing seriously and began to worry. And so did Mom.

The following Monday, I was finally able to track down Clarisse, who had just returned to the office. She politely asked if I calling from work or home. That she would inquire about my whereabouts gave me a clue that the news might not be good. "Home," I replied.

She proceeded to go through the test in a casual manner, telling me that I "passed" the initial testing. But before I could breathe a sigh of relief, she dropped the bomb. Additional testing revealed that I had an extra set of DNA on the BRCA1 gene. Extra set of DNA=a mutation.