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...

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.

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.

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
Sent: 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
Sent: 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
Sent: 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
Sent: 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...

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.

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.