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

Wednesday, December 24, 2008

Christmas Present

It's Christmas Eve and I just received a wonderful and unexpected gift!

It didn't come wrapped underneath my tree, but rather, in a voice message.

Blue Cross Blue Shield of Georgia called and let me know they were, in fact, going to cover my bill for genetic testing IN FULL!

Thank you, Blue Cross Blue Shield!

Yes, Virginia, there are caring health insurers after all!

Thursday, December 18, 2008

Resolution! (other than the New Year's kind)

It's almost Christmas and I've encountered an angel. It's true!

Myriad Labs resolved my bill--they adjusted my balance to zero! Zip! Nothing!

Dear Ms Auton,

Thank you for your assistance in the appeal process. However, Myriad will stand by the quote that Blue Cross Blue Shield of GA gave us prior to the test. In your case, they quoted 100% coverage. If they do in fact deny your appeal, please forward that denial to Myriad and your account will be adjusted to $0.

If you have further questions, please don't hesitate to ask.

Sincerely, Patient Accounts
Myriad Genetic Laboratories

It's time like these in which you want to reach through the phone and kiss somebody!

So, my advice for all you breast cancer survivors whom I've been encouraging to get genetic testing: Make sure you get IN WRITING your insurance company's commitment to pay 100% of the service rendered.

Get it documented. Save the documentation. Get it signed in blood...that's what it takes for insurance companies to honor their word these days.

I've been told that insurers bank on most of us not challenging and fighting their lack of coverage. They figure we're too overwhelmed with other things...like our health.

Although it takes precious moments out of your life, staying on top of insurance companies' payments is critical. I've already spent thousands of dollars out of pocket on cancer, when I could have been vacationing in Alcapulco.

I told Myriad that although they erased my bill, I would continue pursuing payment from BCBS. It's only right that I help. Therefore, BCBS has not heard the last from me.

My next step is taking this to our HR benefits person, since we just renewed our BCBS contract for 2009. What BCBS doesn't know is that my company has a personal interest in breast cancer, and BRCA testing--since we're mostly female employees and the majority of our customers are women, as well.

Just like John Paul Jones, I have just begun to fight!

Take That!

It's not even New Year's, and I've already broken one of my New Year's resolutions. (#3--Show grace and kindness to everyone.)

I was less than gracious to the insurance company's customer service reps, who put me on hold for infinity, and found myriad (as in Myriad Lab) excuses as to why they couldn't and wouldn't pay my bill in full.

My friend, Pam, told me (as I was venting during our walk) that I needed to add a disclaimer to my "be nice to the world" resolution--exempting anyone who is "petty/vile/self-centered/manipulative."

That category needs to be dealt with swiftly and forcefully, without a trace of charm and sweetness. No siree.

If I had only known about the "disclaimer rule," I could have kept all my previous resolutions in years' past.

Wednesday, December 17, 2008

Memo to Myriad

My new best friend, Erica, the genetics counselor, read my blog entry and noted my frustration.

Her advice: Talk to Myriad! She said they dealt with this sort of slimy insurance thing all the time. (My word, "slimy," not hers.)

So, I dashed off a memo to Myriad...

To Whom It May Concern: Attached is the correspondence I received from Blue Cross Blue Shield of Georgia, denying my appeal.

I talked with a BCBS customer rep, who told me that you have to produce evidence that they agreed to pay 100%. She said that although they authorized paying the “billed amount for the services,” this apparently does not necessarily mean they will pay 100% unless you have a separate document saying so.

This must be insurance lingo, because “paying the billed amount” = 100% to my way of rational thinking.

Therefore, I wanted to see if you, indeed, have yet another document that states you received authorization from BCBS to receive 100% payment.

Thank you for looking into this matter.

The Case of the Missing Authorization

I've suddenly become Nancy Drew...tracking down the mysterious document, authorizing 100% coverage.

What would Nancy do? She'd jump on the case immediately. Contact the genetics lab. Contact the genetics counselor.

And friends wonder why I don't return their calls in a timely fashion. As Nancy would tell you, there's no time for chit chat, when you're hot on a case.

When Insurance Doesn't Pay (as Promised)

So, here I am, sitting on eternal hold with my health insurance company, BlueCross BlueShield of Georgia, and listening to the taped message featuring cheesey Christmas music and a perky woman's voice letting customers know how much BCBS cares about us and is there to help. Hmmmm...

"We're looking forward to assisting you!" I'm not sure they want to hear from me today.

I just received a letter from BCBS stating they were denying my appeal to fully cover genetic testing at Myriad Labs--to the tune of $1,000--even though I had produced a letter on BCBS letterhead and signed by William Tatum, MD, Medical Management, BCBS: "We have approved your request to receive care as described above."

Yet, now, BCBS will not accept this document. Go figure.

I've been speaking with Veronica in customer service, who can't answer my question of why I've been denied coverage when I have a letter in-hand stating otherwise. Because Veronica is perplexed, she puts me on hold to find a supervisor.

10 minutes later..."Your call will be answered shortly! Thank you for holding!"

My plan of action, therefore, is to get tough. I'll stay on hold all day, if need be. I'll take this to the top of the insurance company. I'll write an editorial. I'll call every day. I will get this resolved.

20 minutes later..."We do respect your time! Please continue to hold. We will be with you as soon as possible."

It's amazing what you learn when you've been put on hold with your health insurer. I now won't eat too many sweets during the holidays due to diabetes risk...Cold season is here, and antibiotics are not an effective treatment since colds are caused by viruses--rather, drink plenty of fluids, get rest and use an over-the counter cold medicine, if needed...Several ways to reduce getting the flu include wash my hands and cover my mouth/nose when coughing; avoid people with flu-like symptoms; stay home if I don't feel well...Wearing heavy backpacks may injure your child's spine. Limit loads to 10-20% of your child's body weight....Keep fitness goals during the holidays by playing holiday music while working out!

30 minutes later..."We hope the New Year brings happiness and health!"

I'm wondering if they are starting to forget about me. Maybe this is another tactic to avoid paying -- keep me on hold forever so they'll never have to address my proof of a signed document by them.

At this point, I've been on hold for over a half hour and I've heard the recording about the cold season for the 50th time; therefore, I think I shall call them back...

My next call produces Mindy in customer service. She reviewed my information and said that although BCBS agreed to pay for the billed amount of the services, unless there was prior authorization saying they would pay 100%, they would only pay 70%.

Am I missing something here?! They agreed to cover the billed amount on my document, and now they are telling me that I needed to have some additional, special authorization for them to cover 100%. Of course, neither the lab nor I were aware of this. Somehow, I figured "paying the full bill" meant "100%", but then again, I don't know insurance lingo.

Mindy puts me on hold again, and I'm thrust back to "Deck the Halls" and "We appreciate you holding" message while she seeks further information.

I've now been on the phone with her for 15 minutes (for a grand total of 45 minutes)...

Mindy returns and, yep, I not only missed my appeals window of 180 days from the claim (in February)--although I didn't hear the first word about it until October (doesn't matter, said Mindy)...but also, the document I have in hand that states full coverage is negated by the fact that apparently I don't have yet another document saying they will pay 100% coverage.

Consequently, I must go back to my genetics counselor and the genetics lab to see if they can produce the required additional authorization.

No problem. I had nothing better to do anyway today.

Monday, December 15, 2008

2009 Resolutions

New Year's is a little over 2 weeks away, so I've been thinking about next year and what tweaks and adjustments I want to make.

There's something about turning 50 this year--coupled with being a BRCA-carrying, two-time cancer survivor with a recent MRI exposing a "suspicious spot" on my leg bone--which makes me think seriously about how my days are numbered. I realize that I've not only lived over half my life at this point, but, also, that I can't necessarily count on living a long life since I've battled cancer twice. Yes, I'm aware that none of us knows how long we have, but cancer makes you more aware of this little fact.

So, peering into 2009 and beyond, here's what I want for my life:

ONE. I want every day to matter; every interaction with others to matter. I don't have time to waste. A day to waste. A relationship with another human being to waste. I want every moment to be lived, every connection with another person to bring life and meaning. This means changing my Tasmanian Devil-like behavior in which I buzz through life in a whirlwind of activity.

I've been thinking about this a lot lately. Take last weekend, for example. On Saturday morning, we had a security system installed. It was supposed to take only a couple of hours, but I happened to ask the young guy installing the system about his family, and as a result, my husband and I ended up doing marriage counseling with the installer for over an hour. It threw us off our schedule for the rest of the day, but he seemed so eager, so desperate, for advice.

After he left, I rushed off to visit with a former coworker, who had almost died this past year from complications from cancer surgery. Instead of my usual Saturday of errands and chores, I simply focused on spending time with her. And, it was time well spent. We reflected on where we've been with cancer and how life is precious--sharing in a way that only people who've been to hell and back can relate.

On Sunday, we baked Christmas cookies with two teenage brothers (yes--teenagers!) because for some odd reason, we are considered cool and hip enough for them to want to hang out with us. Two teenage guys=flour and cookie dough all over the kitchen floor and every utensil used. Yet, despite the mess that had to be cleaned up, I loved the laughter and they loved the attention.

As I reflect on this past weekend, I didn't accomplish a lot in terms of house & yard projects. Yet, I feel like I connected in a powerful way with others. And that makes me think that my life counts. That I can provide love and hope and joy to others, and that's really all I want for my life.

TWO. I want to stop living in fear. In addition to the economic calamity that pervades everyone's life at the moment, I'm scared that cancer will be discovered in me again and my life will be cut short. And, at the same time, I'm sick of worrying

I want to walk into the future with courage...accepting whatever comes my way. Dealing with life's challenges with power, rather than being the helpless victim. I'm tired of being the scared little mouse, scurrying to hide in a hole somewhere. I want to face life head-on. Of course, that doesn't mean that I won't have my meltdowns, pity parties and moments of angst. But after that, I want to get up, dust myself off, and move forward with boldness...tackling what life has in store for me.

THREE. I want to extend grace to others, being more forgiving and patient, more giving and kind--which will be a major challenge, since I'm often gnashing my teeth in frustration with the world in general. But, so many people have forgiven me for my mishaps and offenses, and extended grace and love and kindness when I needed it most...and I realize what a gift that is.

So, these are my goals for 2009 -- to embrace life more fully and powerfully than ever before, knowing that each day counts. To live with purpose and not waste a day with childish attitudes and ridiculous actions.

Other than these goals, the only other thing I want for 2009 is a great dye job. After all, if you're going to have a new boob job, you have to have great hair.

Saturday, November 29, 2008

A Gift to Myself

What does a girl do when she's facing a potential crisis involving a dubious spot on her MRI? She gets a face lift.

You heard me. A face lift. But not the kind involving a scalpel...I've played with way too many knives this year. I'm talking about a non-surgical face lift. Yes, there is such a thing.

This procedure uses micro-current technology, which stimulates & energizes cells in your muscles. A "wand" is traced over your face at varying levels of electricity to strengthen and tighten your muscles, giving you a natural lift.

In case you think this is some witch doctor sort of thing, you should know that this technology has been used for years among physical therapists.

Of course, I only trust my friend, Chrissy, owner of About Face Skin Care (www.aboutfaceskin.com), to conduct this procedure since she's a former plastics nurse. Now, she runs a successful skin care business in which the products and services are only available through medical personnel.

It takes a dozen times for you to reap the full benefits of this technology, and I'm not quite half-way. However, I'm already seeing an improvement in my reflection. I figure, if my attitude doesn't improve while I wait for the next MRI, at least my appearance will.

Wednesday, November 26, 2008

My New Companion

I arrived home this afternoon to find a message waiting for me from the bone cancer specialist who had viewed my MRI.

He said the MRI "wasn't specific for anything, although it would be a good idea for me to come back in 8 weeks for another MRI to evaluate for any changes."

Don't you love doctor-speak? But, after all these years, I've gotten pretty good on deciphering it: They can't say for sure it's not cancer. "Evaluating for any changes in 8weeks" means, "We want to see if that area grows."

However, I have decided not to respond with Fear...Instead, I've moved on to Panic.

It makes sense that the word "panic" derives from the mythological god, Pan, the creepy little creature who roamed the countryside. With horns, cloven feet and a tail (inspiring Christian images of Satan), even his mother ran away at the sight of him.

One description says, "His unseen presence aroused feelings of panic in men passing through the remote, lonely places of the wilds." This captures how I feel right at the moment. I'm in the wilderness with an eerie unseen presence hovering about me.

I decided to not tell my husband about the MRI. Or my parents. I've seen the toll that cancer and my BRCA surgery took on them this year. And, they can't do a thing but stand helplessly by, worrying about someone they love. Why drag them to hell and back if this turns out to be nothing?

So, I worry--rather, I panic--alone.

If you have or have had cancer, you understand this roller coaster ride. Every test has the potential to expose something bad. And with MRI technology, I've been told that often "too much" shows up on film, adding to the confusion. Much of the "extra stuff" is nothing at all. But, then, as we cancer people can attest, the strange thing they see on an x-ray can turn out to be something with a very nasty name.

So, Pan has entered my life for the time being...but I'm not telling my husband. Although I'm sure Pan will expose himself one way or another in the next 8 weeks as I wait for the second MRI.

Sizing Up the Situation

I've had so much plastic surgery at this point that when I die, I won't be buried or cremated. I'll be recycled.

This was my thought after meeting with my reconstruction surgeon, who felt like my breasts needed to be a tad bigger...just a tad. He said it would look better for my tall frame. But, he left the decision up to me...which is good since I'm the one buying the lingerie.

Of course, my husband, Gary, was no help. He agreed with the surgeon, and described his preference by cupping his hands in front of him at arms' length. Funny.

But, he also said the choice was up to me. Thank you. (I'd like to point out, by the way, that my female friends say my breasts are a normal size...but, that's what I get when I have two men weighing in this matter.)

So, I choose small (excuse me, normal) because I've known too many women who have chosen breast reduction and feeling "free" for the first time in their lives. Well, I'm feel free now...why be encumbered?

My surgeon advised me to think about it over the next couple of months...since I might change my mind. Okay. But, I wouldn't bet on it.

Putting Myself Together Again

Now that I'm five months out from two massive surgeries involving lots of moving parts, I'm feeling the after-effects these days. Somehow I went into surgery fairly young (okay, middle-aged) and came out of OR 30 years later.

I'm sore, stiff and achey all over. If you're a Baby Boomer, you might remember the Samsonite commercial from years ago. It showed a gorilla throwing around a piece of Samsonite luggage in his cage, demonstrating that it was impossible to break open. I suspect that's what the surgeons did to me. I think they also beat me with a wrench...kind of like I've seen mechanics do when they're peering under the hood of a car. At least it feels that way.

And, with all the slicing and dicing of my muscles, my posture now resembles one of the early stages of man you see on the evolution chart.

Then, there's my fragile emotions. I thought I was handling everything just fine --facing the fact that I'm a BRCA gene carrier, undergoing the knife, discovering I had fallopian tube cancer growing inside me. My emotions have been pretty even keel. That is, until something goes awry.

For example, a couple of weeks ago, I received a call at work from a friend's father. She had not shown up for her flight, which had left over 2 hours earlier. She didn't answer her cell phone and no one could reach her. This was highly unlike her, especially since she was speaking at a major conference. I'll skip all the details, but her parent's concern became my panic, as I spent the following hour trying to track down every place she could be. The only thought that came to me during that time was that she was in a wreck on the side of the road, and I'd be going to her funeral that weekend.

Her father called two hours later, saying she had been booked on an earlier flight than expected and was all right. I hung up the phone. And burst out crying.

I react like that whenever anything out-of-the-norm happens--I envision death and destruction and devastation. In other words, I'm not the way I used to be. Physically, or emotionally. So, this is my time to put the pieces of my life back together. That's what you do after surgery.

Physically, I'm doing water aerobics classes and pilades to stretch my body. I'm taking Vitamins B, C & D. I drink cod liver oil each morning. My diet and lifestyle habits have always been Jack LaLanne-approved, but I've stepped it up. I'm paying even more attention to nutrition, as I now consume mostly dried beans, nuts, seeds, grains, vegetables and fruit, and minimize meat & dairy. I eat as much fish as Flipper, and try to buy organic and fresh food whenever I can. I exam each package label like Sherlock Holmes, looking for the dual villains of hydrogenated soybean oil and high fructose corn syrup. And, I continue to drink the same amount of water that travels over Niagra Falls daily.

As for my nerves, I'm spending time processing my thoughts with friends, taking long walks in nature, journaling, connecting to others, praying. I know it will take time for me to reclaim my former life in which my body moves more freely and my mind responds in a calm and collected manner.

But, then again, that may be expecting too much. After all, as a poster child for type-A personality, I've never responded in a calm and collected manner my entire life.

The Waiting Game

Some people have created masterpieces in the same amount of time I've spent in doctors' waiting rooms. I'm sure I could have written a best-seller if I had spent that time at the computer rather than in the waiting room.

But, here I sit once again. For 2 hours. I even made a 7:30 AM appointment. You would think that would get me into an exam room fairly quickly. Instead, I watched an entire waiting room full of patients -- and I'm sure a few people from off the street -- get called into exam rooms before me. So, I sit...and wait.

Cancer treatment is one that requires long waits. You can expect to wait between 1 to 2 hours before seeting a physician or getting a test. I remember the waiting time for radiation was the worst. It averaged 2 to 2 1/2 hours each visit.

So, my advice is to come prepared: bring a book, magazines, journal and/or a friend to talk to. That's what I do. Now, if I just would bring my laptop, then I could pop out a best-seller one of these days.

Tuesday, November 25, 2008

Fear Is Another 4-letter Word

The Exorcist was the last horror movie I've seen since high school. I decided after watching Linda Blair throw up, scary movies were not for me. After all, life is scary enough without adding make-believe to it.

But, isn't that what we do with fear? We create worst-case scenarios in our minds...and most don't ever come to pass. Yet, we live with these torturous thoughts plaguing us for much of our lives.

These days, especially, you can't get away from bad news--from Wall Street tanking to company layoffs to war in Iraq and terrorism hovering. And then there's cancer. What's a girl to do?

I need an angel to appear and say, "Fear Not!" But, then again, if an angel appeared, I'd freak out.

My fears and worries have worn me out. So, just for today, I'm going to take a deep breath, and put my faith where my angst is, and focus on my life at-hand, rather than all the scary, awful potential things that could happen. Because many scary, awful things have already happened in my life, and I have survived.

The reason I have endured many scary, awful things is because they are real -- and humans are designed to handle reality. Fear is not reality. It's a possibility that may never happen. And humans weren't designed to live with "what if?" but rather "what is."

I need to live with what is real and true. And what's true for today is that I'm alive and life is good for millions of reasons. That's what I need to focus on -- being grateful for all that I have been given, rather than worry about what might be. Because choosing worry over gratitude is a waste of life.

Monday, November 24, 2008

I've Never Learned to Limbo

I think I could live in practically any state...except for the state of Limbo.

However, despite my best efforts, I'm constantly being dragged there against my will. As a cancer survivor, you're often dangling between 2 possibilities -- do I have it, or do I not? Only time will tell.

After missing yet another call from the orthopedist, I aggressively tracked him down the next day--with the same determination as if he were an escaped convict--for an explanation of my MRI report. But his answer was disappointing. He didn't know. He advised me to have the report faxed to my oncologist for her to weigh in on this "mystery spot" on my leg bone.

Visions of my leg being sawed off raced before me. All I could think of was how everyone had said I was so brave to have this preemptive BRCA surgery, and I how told them that I could easily give up body parts -- like boobs & ovaries -- any day over losing something really important...like a leg. And now, here I am.

Cancer can cause one to become a drama queen--which I rightly have been crowned. There are some days in which it's simply impossible to be rational and calm. And this is one of them...or several of them, as far as I'm concerned. The worry that I have cancer in my leg bone hovers over me. I feel like Fay Wray in King Kong's grasp. That cancer has a grip on me and won't let me go, and I'm as weak and helpless as Fay Wray (without the movie star billing).

Cancer is like a terrorist. You never know when it's going to strike. So, you have to learn to live with this uncertainty. But try telling a control freak that.

After I ordered the MRI report to be faxed, I followed up with my oncologist's office. Again, no return call on Friday. Which gave me ALL weekend long to obsess.

I left another message this morning. No return call this afternoon. Finally, at the end of the day, my frazzled nerves won over my logical brain, and I took the matter into my hands. I called my oncologist's cell phone. I apologized for calling, but explained that I just needed to know, going forward, whether I should buy 1 pair of shoes, or a single shoe. Okay, so I wasn't quite that sarcastic, but it was something along those lines.

Tonight, she called me back from her home. I decided that although neither she nor I are Catholic, I'm still nominating her for sainthood...right up there Mother Teresa.

She told me that she wasn't overly worried about the report, but wanted to see me next week and have me bring the MRI...so she could explore this matter further. (In layman's terms, it's still not resolved.)

Limbo, like King Kong, just won't release me from its grip.

Thursday, November 20, 2008

Stretching and Retching

I recently redeemed my friend's gift of two one-on-one sessions with a pilades instructor. It was her treat because of all my surgeries this year. How kind, I thought.

But now, after my first session, I am questioning this friendship...perhaps I've ticked her off in the past and this is her way of getting me back. Or, maybe we were never friends to begin with.

It felt somewhat like the torture rack--you know, the one that yanked Braveheart William Wallace from limb to limb...until he died. I was pulled in every direction except for the one that offered comfort.

Even the "pilades machine" resembles a torture rack. See dictionary: The rack is a torture device that consists of an oblong rectangular frame, slightly raised from the ground, with a roller at one, or both, ends, having at one end a fixed bar to which the legs were fastened, and at the other a movable bar to which the hands were tied. The victim's feet are fastened to one roller, and the wrists are chained to the other.

Yep. That was what I was on, all right.

It's amazing I survived. Not only did I survive, I signed up for her next session. Call me stupid. You can also call me a hunched over old woman. Because that's what I am after I've been cut from limb to limb.

With a double mastectomy and reconstruction, your abdominal muscles have been severed and sewn back together. As you heal, you will tend to give into poor posture, hunching over because you're muscles are weak and tight. Stretching is critical in restoring your body to a normal stance.

I thought I was healing just fine. That I was stretching and building strength. At least that was my illusion until I took a pilades class. It exposed my pathetic state. I cannot do a sit-up. Or, much else, it seems.

Jessica, my instructor, rubbed her hands together in glee. Torture is her specialty. She tasked me to do the impossible. Everything appeared so easy when she demonstrated it. Alas, it was not so simple. I realized how desperately tight and weak I am, and how desperately I need this.

It appears that pilades is a perfect therapy after breast cancer surgery. Or, maybe it's another type of therapy I need instead...the one involving my head.

The Waiting Game

I thought after high school, I wouldn't ever have to sit by the phone waiting for a guy to call me. (Obviously, I was in high school ages ago.) But, here I sit -- once again -- anxiously waiting and wondering when the call will come in and what news it will bring.

This is the life of cancer survivors. We're always waiting for the results of a test. For answers to our concerns. For help when we need it. And we typically have to endure hours and hours -- sometimes days -- agonizing over a call.

I cannot begin to count the number of messages I've received from doctors' offices at 5 o'clock on a Friday, saying they have the results to my test...but, I'll have to wait until Monday since the office is now closed. Click. There is a special place in hell for these doctors.

If only they understood the torture they put us through in keeping us in limbo. Would it kill them to give me their cell phone? Just this once?

I am currently dealing with this situation as I wait for the orthopedic doctor to call me. Yes, orthopedist, not oncologist. Trust me, I do know the difference.

I had an MRI the other day, which revealed a torn meniscus in the back of my knee. This explains why I remained standing while the rest of the yoga class of 20-somethings squatted to the floor.

A simple surgery will fix it -- as if I didn't have enough surgery this year, why not go for more? But, the MRI revealed something else. Something that concerned the physician. There was a strange mass in my bone.

He assured me this wasn't unusual. I told him that I was a cancer survivor. He paused. Well, it could be a result of the chemo I had had years ago. Still, to be on the safe side, he asked me to call him a few days later -- which was today -- so he would have the full report.

So, I called. He wasn't available. Surprise! I left my office number and was assured he'd call me. I stayed glued to my desk all day. Until I had to run down the hall...just for a moment. When I returned 3 seconds later, there was a message light blinking on my phone. He called.

The message said: "I have the results, but I don't want to leave a personal message on your office phone, so I'll call you tomorrow." I immediately called his office back, but alas, he had "just walked out the door a few seconds before I called." He was unavailable until tomorrow.

So, now I wait. Again. I wait with my future up in the air. Do I have cancer in my bone? Or is it something else, something benign?

Let me describe for you, the typical mental exercise I go through when I find myself in this situation:

Cancer is back. It's spread to my bone. I'm going to die. I'm going to lose my leg. Please, dear God, don't let me die. And let me keep my leg. Deep breath.

You don't know it's cancer until you get the results, so calm down. I update my will, mentally. I reflect on how I'm living my life, spending my time. Am I living it wisely? Deep breath.

It's probably not cancer. He said it could be fat deposits, or damage from chemo. He's seen this before. Am I up-to-date with my tithe? Is there anyone I need to forgive? Is there unfinished business I need to attend to?

This mental exercise goes on sporadically as I go on with living life...not allowing my thoughts and fears to consume me.

Then, finally, mental exhaustion takes over. You have to come to terms with this latest potential crisis.

So, now after feeling like I got kicked in the stomach because of a suspicious marking on my x-ray, I take a deep breath and realize that also, once again, I will face whatever news I receive with as much courage as I can muster. Knowing that we don't live forever. Knowing that I've lived longer than so many people less fortunate. Realizing that I might be okay after all.

But I won't know that for sure. Until I get the call.

Saturday, November 1, 2008

Chlorine is My Preferred Perfume

I've discovered the Fountain of Youth. It's the pool at my gym.

Swimming is excellent for repairing damaged muscles, tendons, ligaments and broken bones. The water provides a safe buffer, so you can't overextend yourself, and it lessens the impact. (Forget step class, please!)

Whether you are undergoing chemo, or recuperating from surgery, take a dip in the pool as soon as you can. Freestyle swimming is the best, according to a swimming instructor I once interviewed. But, any stroke will do, especially (no pun intended) the breast stroke.

With all my surgeries this year, the only exercise I was allowed was walking. No swimming for 6 weeks. (Of course, this was during the long, hot summer in the South. Did I mention we were also enduring a severe drought?) But, this was due to bacteria in the pool as to why I couldn't stick my tippy-toe in the water.

So, I walked...and walked...and walked...and walked. Advice: Never tell an obsessive-compulsive, Type A person that the only activity they can engage in is walking. I logged 1,000 miles during my recovery time. So, naturally, I developed "planter faciatis" (from over-walking and tearing ligaments in my feet). Fortunately, the timing was perfect because I was given permission to enter the pool again!

But swimming the first few laps terrified me. When you're cut in half and sewn back together, your abdomen doesn't stretch or extend as far as it used to. I could barely move my arms without feeling like I was being pulled from limb to limb, like Braveheart. Furthermore, with all the anesthesia I had had, breathing became difficult, if not impossible.

I swam like a 80 year old woman. I take that back...a 90 year old woman, since the 80-year-olds passed me in the pool.

Then one day, I had limited time to swim and the darned##$%#@$@$@$@ water aerobics class was scheduled at the best time for me to swim my laps. I must tell you that I've loathed the water aerobics classes since I began swimming for exercise 15 years ago.

They evict innocent swimmers trying to do their laps and take over the pool with their class, which consists of really bad disco music and a bunch of out-of-shape ladies bobbing up and down for an hour.

I have resented them for years. I've even complained to the gym management, trying to persuade them to eliminate the class...swimming laps was much better for them anyway, I argued. But to no avail.

So, back to the Saturday in which the only time I could exercise was 9 a.m., but that was the water aerobics class. Defeated, I decided it might be better to "join them, if I couldn't beat them."

I showed up for class. The instructor kicked my butt.

What manner of torture was this?! I was shocked to discover I couldn't keep up with her. She was brutal. She made us run laps down the pool, and then in reverse -- against the current of 20 women. It reminded me of those nightmares in which someone is chasing you and you are running in slow motion.

She made me kick until my legs were numb. She made me to leg extensions in which I couldn't touch the pool floor. She had us pull weights underwater, which was agonizing. Who was this bionic woman instructor?!

I found out. She was the gym's kickboxing instructor, who took on the water aerobics class. And by the way, there's no disco music. She doesn't like music so we can hear her yelling at us.

I've now become addicted to water aerobics, and it's given me strength, endurance, balance and flexibility.

All to say is it's time to yank out that old swimsuit you have hiding in the closet and head to your nearest pool. There, you'll discover the Fountain of Youth.

Saturday, October 25, 2008

My New Role Model

At this point, I'm advising/encouraging several women with breast cancer, who have been directed to me. Breast cancer, it seems, has become a communicable disease.

None of them "want to inconvenience me"--some even apologize for "interrupting" whatever I'm doing with their call. It must be a woman thing. They are so used to giving to everyone else and aren't used to asking for help themselves. It reminds me of when I was in their position and so appreciative of the women who dropped everything to answer my questions and point me in the right direction.

So, I reassure these women: You can't inconvenience me...because it's not an inconvenience. Being there for someone else is the least I can do after the masses of people who reached out to me. They provided a lifeline. And now, I want to extend a lifeline to these women.

Every one of them has the same concerns: facing the possibility of an earlier death than they expected...worrying about finding the right doctor...getting the best advice...being overwhelmed at sifting through all the information and opinions...dealing with anger about doctors' offices for not returning calls...worrying about how their kids are holding up...fearing everything.

My advice is always this: Be proactive. Aggressive. Pester them until you get the answers or help you need. Anything to be heard. With this disease, you can't be passive or shy. You can't simply sit along the sidelines and patiently wait. You have to take matters into your hands. You have to take your life into your hands.

I'm not suggesting you storm the Bastille and take no prisoners, but I can assure you that you can be--and should be--diligent in getting the answers to your satisfaction. Some of the women I've been talking to have told me about doctors who were dismissive with their questions...when you're dealing with your body being mutilated by a knife, there's no reason for anyone to be dismissive. Or, surgeons who seemed irritated and impatient, as if this woman was taking up too much of their time. Then, I advise them to seek a second opinion. Not that they may get a different answer, but you need to be 100% comfortable with the physician you are entrusting your life to. And that includes the physician's office staff, and how well that's run. Believe me, you can be more assertive with doctors -- I promise you, their egos can take it.

It's time we all adopt a new role model...and her name ain't Dorothy.

Wednesday, October 22, 2008

The Hobby of Cancer Patients

People ask me how I spend my spare time. Well, while others are pursuing interests such as tennis or tango, I deal with insurance claims.

It's not the hobby I would have naturally chosen -- I was thinking more along the lines of painting classes or learning Greek -- but, since I was first diagnosed with cancer seven years ago, I have become preoccupied with resolving claims between my health insurance company and the provider - whether it's the doctor's office, hospital, lab, physical therapist, pharmacy...you name it.

First, I want to say that for the most part, I've been extremely impressed with my insurance company, Blue Cross/Blue Shield. Not only have they covered almost every claim, but they have also provided exceptional customer service. They have been pleasant and helpful...even going above and beyond to explain things and work through issues. Most of the time, it's been the physicians' offices who were unorganized and unprofessional...and down-right irritating at times. Of course, how many doctors do you know who went to business school? And yet, most of them are CEOs of their practices.

The cost associated with all my cancer has been staggering when you add it all up -- between the chemo and surgery and radiation (which I'm told is far more expensive than the previous two combined), the drugs and the billions of tests they put you through. The amount of money that has been spent on me could have paid off the debt of a third world country.

But now, I am stuck with a bill that I'm quite baffled about. I received a letter the other day from Myriad Labs, who stated that of the $3,000 for testing they conducted, my insurance company paid a little over $2,000 -- leaving me with the remaining balance of almost $1,000 -- even though BCBS had originally agreed to covering it in full.

When I called BCBS, my customer service rep explained to me that because Myriad was "out of network" for my policy, they would only cover 100% if it was an in-network lab. But, Myriad is the ONLY lab in the U.S. that conducts this test -- so I had NO choice in the matter. They were the only option for me to learn I had the BRCA gene, I pointed out.

Doesn't matter, I was told.

I don't get it. BCBS covered all my surgery -- plus, all the tests, doctors' visits, medications, etc -- because I was a breast cancer survivor & BRCA gene carrier and, yet, they won't pay for the lab that found I was a BRCA gene carrier in the first place.

Go figure.

I learned this after being on the phone for 30 minutes with BCBS today. My next step is filing an appeal and stating my case as to why they should cover this cost in full. Another day, another phone call.

Maybe one day, I'll have time to learn how to knit.

Monday, October 13, 2008

Giving 101

There is woman who works in accounting at my company. I've always liked her because she wasn't your stereotypical accountant (zero personality...no sense of humor...easily irritated by stupid questions from people like me). She was warm and friendly and helpful. She didn't roll her eyes when I filled out spreadsheets incorrectly.

We bonded over my tutorial in Accounting 101. During this time, she and her husband had their first child.

Fast forward 5 or so years, and we ran into each other a few days ago. I immediately recognized the "chemo look." The hairless scalp. The neatly tied head scarf. I was shocked to discover she had cancer.

She's incredibly optimistic. She said she's in good hands with her physicians. She has been on my mind ever since. I'm praying for her, but I want to do something tangible -- like grab hold of her and heal her. This is where we all feel so powerless...when we see someone suffering and can't do anything....and yet we can.

Here is my tutorial in "Giving 101" --

#1 - Care.
#2 - Pray.
#3 - Help...running errands, babysitting, bringing meals, driving them to the doctor's appointment...the list is endless.
#4 - Give...to cancer research.

The month of October has become as synonymous with breast cancer--and as a result, cancer in general--as it has with Halloween. The pink ribbon is as well known as the jack-o-lantern. And because of the enormous effort in raising awareness --and funds -- for cancer research, our lives are benefiting.

This past weekend, my company and our customers participated in a huge fundraiser benefiting the American Cancer Society. Called Order the Cure, it was the brainchild of a man who is beating his dire prostate cancer diagnosis due to advanced treatment now available.

We banded together to sign up participants and "decorated" our building with colored balloons, representing all cancers -- pink for women's, blue for men's, yellow for kids', red for "all other cancers." Participants called and emailed us -- "Sign me up for Order the Cure! I'm a 10 year survivor...our coworker has just been diagnosed with breast cancer...my mother (brother, daughter, sister, best friend, husband) is going through cancer treatment right now..."

A sharp young woman named Michelle with the American Cancer Society pulled together an army of volunteers who came out in force to help. We printed t-shirts and bought hot pink pens, and produced stickers that said "I Ordered the Cure!"

Stories began trickling in. One participant asked her customers to write the name of loved ones on a colored card, which she taped to her doorway. At the end of the fundraiser, she will be sending all the cards with the names to prayer groups. Another participant found checks made out for $1,500 and $3,000 in their donation jar. People were genuinely enthusiastic to pray and help and give. The final numbers are not in yet, but I know we raised thousands of dollars for cancer research.

In a few weeks, a member of my staff will be participating in a separate fundraiser -- the 3 day breast cancer walk totaling 60 miles. She's raised over $3,000 in donations and is walking in my honor. Another example of giving.

So, in addition to caring and helping and giving, I'm also praying that my coworker will have every reason to be optimistic. That she, too, will be cured of cancer so she can go back to doing "mom things" and continue to tutor people like me in basic accounting principles.

Wednesday, October 8, 2008

Memories...Of the Way I Was

In Gabrielle Garcia Marquez's book "100 Years of Solitude," he writes about a town in which all the citizens catch a disease in which the side-effect is memory loss. He must have been writing about menopause.

My memory has vanished due to the abrupt loss of estrogen resulting from my hysterectomy. A friend commisserated with me: "Instead of getting a hysterectomy, I think I got a lobotomy." She went on to say that her sister is so frustrated by her lack of memory that she's rethinking taking a vacation anywhere. She figures, why bother spending all that money when she'd forget it all six months later?

I know how she feels. I can't remember from one moment to the next. I have to write every thing down, or the thought will evaporate. I mix up the names of close friends. I misread emails and recipes. My cooking has become suspect...

Yesterday, I washed my face, applied makeup, brushed my teeth and began getting dressed for work...when I realized that I hadn't showered. All of this would be funny, except that on the drive to work, blue flashing lights caught my eye on the expressway. In a split second, the car in front of me slammed on their brakes and I had to swerve -- barely avoiding an accident -- all because I had gotten distracted.

So, now my scattered brain has gone from being mildly amusing and somewhat irritating to very scary. Friends have offered their advice -- supplements, websites, books. So much to read, so much to retain mentally.

I ask my staff to be patient with me. This group of twenty-somethings does their best to tolerate my forgetfulness, but their estrogen-filled bodies can't relate. I remember when I used to have a quick mind like they have now. This must be one of the passages in life I must adapt to. At least I can trade experience, maturity and wisdom of age for detail, multi-tasking and clarity of youth.
I guess it's time for me to switch from my natural brunette color and dye my hair blond since that typifies my state of mind from now on.

Wednesday, September 17, 2008

The Big "L"

Tonight is the last night of my 40s...funny how the 40s seem so youthful now.

Of course, being a Baby Boomer, I will always claim being young at heart versus the alternative. However, I can't dodge the fact that I'm moving into another decade -- and one that is without a doubt middle-age. This was verified by the AARP card I received in the mail, as we all do on this particular birthday.

A friend said not think of it as turning "50," but rather turning "L." I didn't understand what she meant -- did she mean think of it as "hell"?

"No...don't you get it?" she asked. "L is the Roman numeral for 50." So, I guess I'm "L" instead of 50.

Although I'm having to get my mind around this new decade/stage in life and crossing over to "the other side," of the aged, at the same time, I celebrate that I've reached this far in life. I'm grateful to be alive after all I went through this year - so, when you look at it that way, I think 50 is pretty cool.

It occurred to me that I've been given 3 chances at life when the odds were against me:

* Birth -- My mother was pregnant with me just 2 months after she delivered my older brother, making us Irish twins. Talk about being a "mistake," the story is told of the night Mom announced her news to Dad. It was pouring down rain and Mom & Dad were driving up the mountain in Birmingham, iwith a newborn baby crying in the car. Dad was unemployed since he had just gotten out of the military-- meaning, no money + no health insurance + 3 mouths to feed. The car died as they were going up the hill, and Mom picked that decisive moment to tell Dad that she was pregnant with me. Dad recalls how he put his head on the steering wheel and cried. Of course, I've been a blessing ever since...

* Surviving breast cancer at 42. Despite my annual gynecologist visit and mammogram not showing any trace of cancer, my monthly self-exam told me otherwise there was a problem. Because I pushed and pursued further testing after finding a lump, I saved my life.

* Surviving fallopian cancer at 49. Pursuing BRCA testing and being proactive about preventative surgeries this year resulted in finding pre-cancerous cells on my fallopian tubes, which would have ultimately killed me since I would never have known they existed until it was too late.

When I think about these incidences, I feel like there is a reason I've been spared...that there must be a purpose and meaning to my life. And tapping into that purpose - which, I believe, is being there and caring for people who are in pain, in a deep and caring way -- is how I plan to live out the rest of my life.

Happy Birthday to me.

Thursday, August 28, 2008

Mentoring 101

I have become a mentor for two women I know, who were recently diagnosed with breast cancer. My heart broke each time I received the news of their diagnosis, and all I could think of was wanting to alleviate their fear and hurt. I've been there.

Both are outstanding women, who live remarkable lives. They have interesting jobs and are terrific moms. I hate this for them.

I'm also extremely touched they turned to me for help, comfort, advice. With this topic, it's impossible to avoid the personal and vulnerable in discussions. You get down to brass tacks and dirty details.

This gut-level honesty establishes a tight-knit bond quickly and powerfully. Because we're talking life and death here. (Okay, so we're also talking beauty tips...)

We discuss our mortality. We share our frustration about our predicament: what did I do to get this?...why won't the nurse call me back?...what if treatment fails? We talk about solutions to combat the side-effects of chemo and dealing with well-meaning people who do the wrong thing. Most of all, we commiserate.

I feel the weight of responsibility in not wanting to let them down. Being a mentor, you want to make sure you are doing everything you can.

But, this is where I need to be reminded of my own advice. When a friend asked what I found most helpful while undergoing cancer treatment, I told her it was every single thing people did to let me know they cared, that I mattered and that I wasn't ALONE. Feeling like everyone is living full, glorious lives while you are on the sidelines fighting a disease and missing out on everything. This is a daily struggle. When people take part in your ordeal, you are reminded that you're not on the outside...others are with you every step of the way.

I think of Jan Bilthouse, in particular. Jan, who is owner of The Bilthouse apparel boutique in Buckhead, is a breast cancer survivor and extremely involved in fundraising and mentoring for breast cancer. When I heard I carried the BRCA gene--which meant a double mastectomy--I immediately thought of Jan, who had already dealt with this. I left a message with an employee at her shop the day before Thanksgiving, and explained the reason for my call. It seemed like just a few minutes later, my phone rang. It was Jan, driving her family on the way out of town for the holiday. She responded to my call for help right then and there. It was exactly what I needed.

I hope the women I'm reaching out to will be on "the other side" of treatment soon, with a new perspective and appreciation for their lives and the knowledge that they do, in fact, matter.

Thursday, August 21, 2008

Mom & The Blog

Well, the word is out. Mom has read my blog and, of course, she remembers details differently. I knew she would. She pointed out the facts I got wrong and gave another point of view about certain incidences I wrote about. I told her to start her own blog.

But, mostly, she said it appeared, as she read my blog, that all she & Dad did throughout my ordeal was 'let me rest in their easy chair." So, let me set the facts straight on this one: They were amazing.

Mom & Dad have been my support throughout my bout with breast cancer and, more recently, my BRCA testing and surgery.

From the very beginning, they have played a critical role. They were the ones who showed up at the doctor's office the day I found out I had breast cancer seven years ago. Gary was at work because I was assured by the doctor's office that they wouldn't find anything conclusive that day, so it wasn't necessary for him to be there. I sent Gary off to work that morning and he naively went. But, Mom & Dad, with their experience in caring for others over the years, knew someone should be there with me...just in case. And they were right. I was diagnosed that day, and needed them to carry me out of the doctor's office and take me home in my state of shock.

Throughout my cancer treatment, they provided food, ran errands, took me to doctors' appointments and screenings, and sat with me during all the long waits. They offered to help in any way they could. They even paid for my "chemo wig" -- with a $1,000 price tag that was not covered by health insurance at the time.

During the years following my treatment, they called for an update every single time I had a follow up doctor's appointment or mammogram.

And, this year, during all the BRCA testing and surgery, once again, they drove me to appointments, ran errands, researched information I needed, fixed food, cared for me during recovery from surgery...and let me rest in their easy chair.

Wednesday, August 20, 2008

Christina Applegate

The actress, Christina Applegate, has been in the news recently about having breast cancer at a young age, testing positive for the BRCA gene and undergoing a double mastectomy. In her interviews, she showed bravery and a sense of humor (saying she would have great-looking breasts in the nursing home compared to all the sagging women).

Two things I noted about this incidence. One, is how I see my parents still being affected by the stress they endured this year, worrying about their daughter having the BRCA gene and undergoing all the surgery. Mom stayed glued to the morning new shows when Christina was interviewed. Then, Mom responded by doing something she had never done before -- she posted an email on one of the national network station's site, saying that since Christina was carrying the BRCA gene, she needed to watch out for ovarian cancer as well, which was never mentioned in discussions about BRCA. For Mom to post an email to a national site told me that BRCA was still top of mind for her.

And, Mom is right. My oncologist told me during my recent visit that of her BRCA patients who have undergone the propylactic (preventative) surgeries, that 100 % -- repeat, every single one of us -- had pre-cancerous cells on the EXACT same spot on our fallopian tubes. One 100% of us. That tells you something -- that the BRCA gene is far more insidious than just breast cancer, and women need to take a hard look at the possibility of having ovarian cancer as well if they carry this gene.

The second thing that struck me with the Christina Applegate interview is her claiming to be "cured of cancer." I love her optimism and her spirit. I'm hoping she will never experience cancer again. However, the statement is false, since once cancer is in your body, you can't guarantee that there aren't other cancer cells lingering somewhere that chemo or radiation or surgery didn't eliminate.

So, although I had a double mastectomy and hysterectomy and reduced my chances significantly of developing cancer again...there's still that remote possibility there will be a stray cell that can develop into full-blown cancer. That's why I will never be able to take estrogen or consume soy products -- since estrogen/soy "feeds" cancer cells.

I am glad, however, that Christina Applegate appeared in public and shared her story -- who knows how many young women took note and began questioning their chances of carrying the BRCA gene. After being immersed in the world of BRCA this past year, I'm discovering the enormous lack of information about this gene among the breast cancer community -- especially among breast cancer survivors who are strong candidates for testing (those who developed the disease before menopause)...and especially among survivors with daughters.

A simple test could provide worlds of information that could not only save your life, but your daughter's as well.

Friday, August 1, 2008

Why Pursue BRCA Testing

Several books have popped up recently about women who discovered they carried the BRCA gene and their resulting decisions.

One woman in her thirties had a double mastectomy, but held off on a hysterectomy until she had children. The other author decided to do nothing since she felt there were more issues around early menopause, and didn't want to subject herself to all that surgery.

HERE'S WHY I PURSUED TESTING & ACTION:
  • I was advised to undergo BRCA testing, since I was diagnosed with breast cancer at 42 years old. Diagnosis at an early age (pre-menopause) is an indicator that you may carry the BRCA gene.
  • BRCA testing is often covered by health insurance, especially if you have already had breast cancer. Or, if you prefer, you can pay for it yourself ($3,000) so that your insurance company doesn't know.
  • NOTE: Myriad Genetics Lab does not report results to your insurance company (it's completely confidential), so the only way this will go on your insurance record is if you have your insurer pay for it.
  • The BRCA gene has implications for other family members. If it's confirmed you carry the gene mutation, then other females in your family may be at risk. The male can be a carrier (my dad passed the gene to me) and may be at risk for early prostate cancer. However, the higher risk for developing cancer is among females.
  • Just because your family carries the gene mutation doesn't mean that you will inherit it. My sister-in-law's mother, aunts and grandmother all carried the BRCA gene and it wasn't passed along to her.
  • Once you are diagnosed with the nightmare of breast cancer and endure all the treatment, you never want to go through that experience again. If you haven't had breast cancer, but are at high risk, you need to think long and hard about keeping yourself at risk.
  • A scarier diagnosis is ovarian cancer since it's extremely hard to detect in early stages and is very aggressive and invasive. In fact, it's most often found when it's hard to effectively treat.
  • I can't say this enough: Because I took immediate action -- even when my doctors thought I had more time before committing to surgery -- they found fallopian cancer in its initial stages (pre-cancerous, non-invasive cells). This was a shock to all, including my surgeons. After this discovery, I was told that had I postponed surgery just 6 months later, I would have been in trouble. It was a miracle I had surgery when I did.
  • Many breast cancer survivors I've talked to who were also diagnosed at an early age have not pursued BRCA testing since they don't know enough about it and don't think it applies to them. However, when I was diagnosed with breast cancer 7 years ago, I was told by medical experts that my cancer was not linked to heredity. Seven years and tons of medical research later, it's a different story. In other words, check it out. Information may have altered since your original diagnosis.
  • What I didn't realize was how significantly reconstruction surgery has developed over the years. I can honestly say that my body looks better now than before surgery. While it's not a recommended diet plan by any means, if you have to go through all the trauma of surgery, this is to assure you that there's a strong chance you'll come out of it reducing your risk of developing cancer AND with a new body as a consolation prize. This may sound shallow in light of cancer and death, but is a real concern among women (to have their body massacred) and why many don't pursue taking action.
All to say, I recommend anyone who thinks they might carry the BRCA gene to talk with their physician. If you haven't had cancer, talk with your gynecologist. If you have had cancer, discuss with your oncologist. It could save your life.

Thursday, July 31, 2008

Determining My Fate

I met with my oncologist this morning for the first time since all my surgeries were completed and pathology report in. Since they had discovered "fallopian cancer" (although it was precancerous cells, it's still considered cancer), I waited for Dr. Kay to determine whether I had to face another bout of chemo or not. My future was in her hands.

With cancer, your future is always in the oncologist's hands. Period. Not the surgeons. Not the radiologists. Solely, the oncologist. Remember that.

First, I would like to point out that after umpteen times I had to starve myself before tests and surgery, and all the times I went without sustenance following surgery, and all the times I released my food via mouth (if you know what I mean) and all the time I wasn't hungry...I STILL DID NOT LOSE A SINGLE POUND THROUGH THIS ENTIRE ORDEAL!!! You would think that an ovary or two would weigh something...

So, that got me off in a bad mood this morning at the doctor's office. Then, there was over a 2-hour wait...

Finally, when I saw Dr. Kay, I was--as the saying goes--"fit to be tied." However, my frustration over my weight and wait eased substantially when I remembered that this woman, alone, had saved my life. If she had not pushed for BRCA testing, I would have been walking around with fallopian tube cancer developing...and would never have known it. And it would not have had a happy ending. I thanked her for saving my life a 2nd time. She smiled.

She told me that of all her BRCA patients, 100 percent (yes, every single one of us) had cancer developing on the exact spot on our fallopian tubes! I'm sure they will be looking more closely at that phenomenon in the future.

She also said that since I'm still only 7 years out from my breast cancer, I would still need to see her every 6 months for a blood test -- plus, an annual chest x-ray, bone density scan and an MRI for my breasts (since mammogram is no longer necessary) and a blood test for ovarian cancer (for the cells in that area).

I'm still susceptible for cancer developing in my body because of my original cancer -- plus, BRCA carriers are more vulnerable towards other types of cancer besides breast & ovarian, such as pancreatic (oh, goody).

Although this was disheartening news, on the upside, Dr. Kay said my chances of developing breast or ovarian cancer were 5 percent - significantly low.

It's a good news, bad news sort of thing. I've beaten cancer and an early death twice, as I turn 50 this year. At the same time, cancer will always be a phantom hovering over me.

But, I can accept that as my fate. I know I am mortal and I will die of something eventually. And, I'm truly grateful for being able to live this long.

And, for the time being, I don't have to face chemo again. Now, that is reason enough to pop the champagne cork -- except that champagne has calories and now I must concentrate on moving the scales in the opposite direction.

Monday, July 14, 2008

Wine & Whine

About once a month, I meet with a couple of friends, and we vent and rant about what's on our minds. We're a safe outlet to share our fears and frustrations about all that the issues we're facing in midlife. Since we cluster around food & drink and talk nonstop into the night, we thought it was fitting to call our gathering, "Wine & Whine." While some find value in book clubs, we find meaning in whining.

Naturally, all conversations are strictly private, so I won't share any details. However, the one common denominator is how much we've all endured by the time we've reached the age we are now. Our journey has not always led us down a yellow brick road to the Emerald City where all wishes are granted. We are no longer wide-eyed, innocent Dorothy's, who triumph over the Wicked Witch. Life is a little more complicated than that.

I will tell you that since Gary & I have been married (8 years), we have navigated through financial hits, career crises, elderly parents with debilitating illnesses, extended family concerns...and then there's cancer added to the mix. (Not to mention Atlanta traffic, but that's another rant altogether.)

It's all we've been able to do to keep our heads above water.

So, as much as I celebrate the good news of being "cancer free" now, I'm waiting for the next trauma to deal with...you could say my nerves are shot.

They call this Post Traumatic Stress Disorder (PTSD), which, like Wine & Whine, is a perfect descriptor.

After I came home from my second surgery, a friend gave me "In An Instant" by Lee Woodruff. Lee is the wife of ABC news anchor, Bob Woodruff, who suffered a critical brain injury from an explosive device while reporting the war in Iraq.

Her book totally engaged me, as I read with interest and empathy. Although Bob's head injury was severe, Lee had endured many tragedies in adulthood: She had lost a child, uprooted multiple times during her marriage, discovered one of her daughters was deaf, had a sister with a brain tumor and faced the possibility, herself, of having cancer.

She writes: "The more trauma a person has been through, the more they have seen, the worse the PTSD is. The cumulative effect appears to make the person much more susceptible."

She goes on to share how the horrific experience with her husband's slow recovery affected her: "I had morphed from a confident wife and parent into a woman fearful of everything, especially of my kids getting hurt...I saw potential head injuries everywhere. Even driving my car felt scary now. All I ever seemed to say as a mother was, 'Don't do that, stop it, be careful there.' I had become a coiled spring, waiting for the next injury or accident."

She admits, after the crisis was over and her husband was on the road to recovery: "A tiny part of me keeps waiting for a shoe to drop, for something bad to happen. When Bob doesn't answer me from another room after a few beats, I walk in to check on him. When he doesn't return from the store in a reasonable time, I make a call. These are my battle scars."

Amen, Sister! Can I ever relate! When I finished cancer treatment and began resuming a "normal life" again, I worried constantly about those I loved dying. I worried that Gary would have a car wreck on the way to the office, or his plane would crash on a business trip. (I even left his messages on voice-mail until he arrived safely home, in case that was the last time I heard his voice.)

If I had trouble reaching my parents, I imagined they were lying on the floor suffering a heart attack. Death had become a real possibility, and I realized we were all hanging onto life by a thread -- that any of us could be taken out at any moment. I didn't rest.

Although I've calmed down a little bit, I'm still on edge when it comes to my loved ones' safety. And, from time to time, I picture scenarios of potential future problems, so I can devise a plan of action -- just in case.

The one thing that helps calm me is knowing deep down that I can rise to a challenge and all that it entails. I know this because of my experience with cancer and facing my own mortality. I'm stronger than I ever realized.

Lee Woodruff makes a great point in view of her sufferings: "The moments that define us, that strip us down to raw bone and cartilage and build us back up: they are the tough ones. They are the stories of grief or tragedy, stories tinged with sadness and sorrow...I believe how we attack those curve balls is the stuff of life; they count just as much as the good times...

"And so, we have to choose to laugh and to keep smiling. We have to hope that there is always something better around the corner. We doubt our ability to rise to meet hardship, and we do everything in our power to avoid it. We have to dig down, to believe unfailingly in the ability of the human spirit to triumph in ways we didn't think possible. To make the choice to be resilient, ultimately to bounce back, is to make the choice to be grateful, as grateful as possible for the cards you've been dealt."

I might have to invite Lee Woodruff to join our Wine & Whine group.

Friday, July 11, 2008

Caring for Mom

Breast cancer, as you can imagine, isn't just a disease of the victim. It affects everyone who is connected to your life, especially your family.

Of course, my husband was greatly impacted, and obsessively worried about losing me.

But the toll on my parents is what broke my heart. What do you do when your child is sick and you can't make her better? Parents think they're supposed to cure all ills and remove all pain, and when they can't, it's torture. This was the case with my parents as I observed their grief and fear over me.

Right after it was discovered that I carried the BRCA gene, Mom & Dad were over at my house for Christmas Eve dinner. Mom was acting strange, so I pulled her aside and asked to speak to her in private.

She broke down hugged me tightly: "This shouldn't be happening to you...I'm the one who should die first, not you!"

Well, first of all, no one was talking about dying...at least, yet. I was researching surgery options at that point, not caskets and funeral arrangements.

But, I understood what she was saying. She was terrified of losing me...and all mothers take a solemn oath before they deliver their first child that they'll do everything in their power to make sure their children outlive them. That's just the way it should be, according to moms everywhere. Unfortunately, that's not always the way it turns out.

I tried to comfort her, but I knew the only thing that would reassure her would be for me to sail through these surgeries and reduce my chances of getting cancer in the future.

I realized more deeply how much my mom was suffering when she shared with me a heartbreaking email she had sent the prayer group at her church. In her anguish, she wrote:

"Julie stopped over tonight to tell us about her latest report. I can't believe she has been inundated with cancer like she has. Fortunately, the surgery was done in the nick of time since they found pre-cancerous, non-invasive cells in the tissue of the fallopian tubes. She says this was "good news" but they need to remove the uterus in 3 months down the road. I only hope this will protect her from any future cancer but who knows if it will or not?
It is very upsetting to me having brought her into this world, but now the damage has been done."

A beautiful response came from the prayer group leader, who knew the vulnerability of being a mom:

"We are keeping Julie our prayers. God, who began a good work in her, will continue it until the day He comes again! Through her healing, we will all be blessed. Hang in there. God is in control."

To my great relief, I wasn't the only one who had spectacular friends. So did Mom. Amazing, dynamic friends--with years and years of care-taking experience as moms and grandmothers.

One of Mom's best friends drove up from a beach vacation in Florida -- over a 7-hour trip--to make sure she was with Mom during my first surgery. She brought with her homemade soup and muffins. (During my second surgery, the same friend was at the hospital again with freshly baked cookies for my husband. She has earned sainthood, as far as my husband is concerned.)

Mom also received a flood of cards, calls, emails and offers to bring me food. In fact, Mom had more correspondence about my cancer than I did...which was fine with me.

When we heard the good news about my pathology report, Mom received over 50 email responses from friends and well-wishers.

People's generosity carried Mom & Dad through this nightmare than no parent should have to face--and for that, I am indebted to all the people who took time to place a call...or write a note...or say an encouraging word...or give my parents a big hug. These simple acts go a long way in getting us through the tough times in life. And when you think about it, they are actually the mightiest acts of all.

Wednesday, July 9, 2008

A Minor Setback

It had to happen. I was on the track toward healing when my incision tore. Yikes. Okay, so I admit I might have been overdoing it. After all, they don't want you sitting around all day because of blood clots...so what's a girl supposed to do, I ask?

But there's nothing like a hole in your abdomen to get your attention. You'd think I would have learned after my previous scare when I thought I'd caused a hernia the day after I came home from the hospital. But noooooo. Type A's don't easily grasp the concept of "slowing down to let your body heal"

It typically takes a set-back, like hernias and ripped incisions to make us take a situation seriously.

Although it may not be obvious, the body is wounded internally after such intense surgery and rearranging and requires rest and tender care.

Now if only I could remember that...

Wednesday, July 2, 2008

A Survivor's Purpose

I recognized her instantly. The pale, delicate complexion. The carefully wrapped headscarf. The vibrant, magenta hat the completed her outfit. She was easily identifiable. A chemo patient.

I was browsing through the bookstore when I spotted her making a purchase. Something about her demeanor tugged at me to go over and say something encouraging, like, "I've been there. You'll get through it."

But I didn't. What if I offended her by being presumptuous? What if she possessed a reserved, guarded personality that didn't freely bear her soul to others? Who was I, a stranger, to approach her and delve into her personal life? Instead, I stood silently in the background, while eavesdropping at the same time.

"How are you today?" asked the saleswoman, as she rung up the purchase and placed it in a bag.

The lady with the magenta hat shook her head forcefully. "Not well," she replied, suppressing a sob. She quickly paid for her item, grabbed her package and bolted from the store. People near the counter looked at each other silently as the door slammed. Their expressions conveyed heartfelt anguish.

I stood there ashamed. Here was an obvious cancer patient, experiencing a bad day--just like the ones that had engulfed me--and I did nothing to help. I resolved then and there, despite any awkwardness on my part, I would reach out to others like her in the future. As a survivor, it was my duty.

How many times during my own battle with cancer did I feel exasperated and discouraged, scared and angry? Days when I was embarrassed to be seen in public. Days when I was fed up with all the shots and the perpetually foul taste in my mouth. Days when treatment seemed like a never-ending process. Days when I wondered if I was going to live.

Despite their compassionate intentions, friends couldn't fully relate. People were either horrified if I made a joke about my condition, or they put me on a pedestal for enduring it all. But, I wasn't a hero; I was a mere mortal with authentic feelings.

My savior came in the form of a woman I knew who was a lung cancer survivor. Since Dee had previously walked in my steps, she knew the treacherous terrain by heart. On our long walks together, we discussed our fears and frustrations associated with cancer. She validated the imperfect thoughts I shared.

Although an impressive support network exists for cancer patients, it was an up-close, personal connection that helped me through the particularly rough spots.

This is true for all the curve balls life throws us. We need those who have already lived through our painful experience. No one else can fully comprehend the questions, fears and anger like another sufferer...whatever the particular situation. It takes one to know one.

My lowest point emotionally during treatment coincided with a dinner invitation from Dee and her husband. That day, I looked and felt horrible, and wanted to cancel. Nothing my precious husband could say convinced me to change my mind. At the last second, though, I decided to go since I would be spending time, after all, with Dee.

She answered the door looking splendid--chic haircut, stylish outfit, enviable figure--compared to me in all my frumpiness and baldness and bloating. As soon as we sat down in her living room, Dee asked matter-of-factly how I was.

"Fine," I replied, masking my misery.

Gary--who never speaks for me--intervened. He told Dee the truth, that I was having a really tough day. I was so grateful for him speaking the words I couldn't voice.

Without a word, Dee got up and left the room. We sat there in silence. A few moments, she returned with a photo album. She squeezed in between Gary and me on the sofa and flipped the album to the first page.

There she was in living color -- bald, pallid skin, grimacing at the camera. Photo after photo documented her experience with cancer. They say a picture is worth a thousand words. By giving me an intimate glimpse of her struggle, I felt understood and restored.

Now, I realize it's my turn to stand in the gap for others in need.

So when I'm approached to provide information or encouragement for someone who has been diagnosed, I realize that hanging out along the sidelines in silence is no longer an option.

Monday, June 30, 2008

Banner Day

This is where the Halleluiah chorus from Handel's "Messiah" comes in. Ready?
HALLELUIAH! HALLELUIAH!
HALLELUIAH...HALLELUIAH...

HALL-EEE-LUIAH!

My pathology report came back "clean." No cancer. Zip. Zero. I left the doctor's examining room and walked into the waiting area, where Gary was sitting. I smiled and told him the news. He got up from his chair, hugged me tightly, and broke down crying in front of everyone.

We walked out to the elevator lobby and hugged and cried some more. The news marked the end of a 7-year odyssey of living with cancer, and then living with the threat of another cancer developing. To end this chapter of my life seems surreal. I've gotten used to all the tests and doctor appointments and anxiety that accompanied it, waiting for the next cancer diagnosis. How do you return to "normal" life after all this? I'm not sure you ever do. Especially when your primary care physicians are oncologists. That's when you know you'll always be in a different category. But that's okay.

The first person I called to tell the good news was my mom, however, the phone conversation ended abruptly since I was crying so hard, I couldn't complete a sentence. With all the stress this disease has wrought on my life and Gary's, I think the people it's hit the hardest have been my parents.

I've heard the one death you never overcome is the death of your child. A parent always thinks they will die first, since that's the natural order of things. They also believe, erroneously, that they have the power to protect their child...no matter what age. I've watched the toll all of this has had on my parents, and it's been painful to watch their pain, their helplessness.

I recall last Christmas, when Mom pulled me aside and begged me, "Don't die before I do. I couldn't live if you did." Tears ran down her face. " This should be happening to me, not you. I've lived a full life, but you're too young." What do you do with that? How do you respond? I wanted to take away her agony and guilt and fear, but I was just as helpless as she was with my BRCA diagnosis. The only thing I knew to do was to take action.

And, that's my biggest advice for women who've had breast cancer or suspect they are a candidate for the BRCA gene. Take action.

Taking action has been the critical element in this entire cancer drama:

* It was because I conducted a breast self-exam that I found my lump. Even 2 mammograms two weeks later did not reveal a mass.

* It was because I forced the issue that I got further testing. And further testing revealed aggressive cancer.

* It was because I took action in selecting the very best healthcare professionals I could that I believe I got the best treatment for breast cancer.

* It was because I pursued BRCA testing last fall -- even when I had been told 7 years previously that my cancer wasn't hereditary -- that I discovered I carried the gene mutation.

* It was because I was so determined to deal with this "sooner than later" and get a double mastectomy and full hysterectomy to decrease my chances of future breast and ovarian cancer that they found pre-cancerous cells in my fallopian tubes as early as they did. Six months later, they told me, would have been a different story altogether.

Why do I tell you this? It's not because I'm such a noble person for taking action. Far from it. My natural inclination is toward procrastination. In fact, it's one of my specialities. And, I'm also not saying that taking action always gives you the perfect fairy tale ending. You may lose the battle with cancer because it's a nasty, hateful, deadly opponent that strikes witout warning, despite your best efforts.

But, your best defense is to do something. NOW. Not tomorrow. I've realized that Now can make the difference between life and death. I hope I can take this advice into other areas of my life. Wouldn't it make such a difference if I took action with all the zillions of other things I need and want to do...one day?

While sitting on the examining table, waiting FOREVER for the doctor to come in and tell me my pathology results, I prayed. I don't pray for "miracle cures" as much as I pray for courage to accept what God is leading me into and grace to walk into the future with love and compassion and gratitude instead of bitterness and self-pity and anger.

I then began praying for all the people who have cared so much and done so much for me during this entire ordeal. All the love, hugs, tears, phone calls, cards, emails, gifts, meals, car rides, doctor appointment buddies...it's so much. I've been placed on countless prayer lists in churches and small groups throughout several states.

My friends and my entire family have given enormously and sacrificially, and I feel greatly indebted. I want to be there for others in the same way people have been there for me during my darkest times. This experience has allowed me to see the power of us ministering to each other in the simple, daily routines of life. Maybe this is the most profound thing I've learned from cancer.

Other than it's nice to not be bald.