Round 2

Well, I'm back for Round 2 and preparing myself for another pummeling. After checking in with my 3 Musketeers-- my regular oncologist, surgical oncologist and reconstruction surgeon -- it has been determined that I will undergo my next surgery in a matter of a few weeks.

The interesting thing is that my oncologist and my surgeon had differing points of view about next steps. My surgeon felt strongly that I had nothing to worry about and pondered whether to put me through another surgery. He said if I were 80, he wouldn't consider it at all. However, he didn't necessarily want to take the chance that something could surface down the road. Ultimately, though, he left the decision up to MOI as to whether to have another surgery...and if so, when.

My oncologist had a totally different take on the matter. I knew she would. The obsessive-compulsive, hyper-diligent, perfectionist, worrywart that she is. So, I knew I would defer to her no matter what irritating advice she would dispense since I trust her above all humanity. And irritating advice it was. She said the pre-cancerous cells that were found in my fallopian tube during the last surgery were more and more common among BRCA patients, so she encouraged me to have the exploratory surgery "the minute my body was deemed healed enough to undergo it again." Drat and double-drat.

I found this both interesting and disconcerting: Here I am a fairly educated, well-read person with a background in healthcare writing, married to someone who works in the healthcare field and with many friends involved in healthcare as well. As a result, I have received lots of information and advice every step of the way. So, making an intelligent decision about which doctor was correct and whose opinion I should follow seemed simple enough. But what about all the women who didn't have the connections I did? How does the average person make critical decisions about their health when they receive conflicting and confusing advice from medical professionals?

Like I said, I chose on the side of caution with my oncologist, so that if, in fact, they do find cancer again, I'd rather know now...since timing is everything with this disease. I didn't want to kick myself one day and say, "If only I had done something sooner."

So, here I am, facing my next surgery -- to remove my uterus, perform an abdominal "wash" (to remove fluid and test it for cancerous cells) and check lymph nodes. In addition, since I never seem to do anything half-way, I'm going to have the rest of my breast reconstruction at the same time. Just call me the Bionic woman.

Last night, I awoke at 3 a.m. with my mind racing back to images from my previous surgery in February. All the needles jammed into my arm, struggling to breathe on my own and feeling like I was suffocating, the sterile hospital room, the drugs, the dizziness, the nauseau, the pain, the anesthesia, the fear. I stayed awake for the remainder of the night reliving my miserable experience.

I was hoping to postpone this next surgery until fall -- to give my body ample time to physically heal, and my psyche time to separate myself from the trauma. In fact, I had decided upon my last blog posting to take time off and simply focus on life. I needed a break from thinking and worrying about surgery and doctors and cancer.

So, I chose to enjoy the spring, which was magical this year in Atlanta. Warm, cool, sunny, rainy, stormy, breezy, fragrant, vibrant. I visited an organic farm and ate dinner on the grounds. I went bird watching in Fernbank Forest. I visited my favorite nursery and bought flowers and herbs. I gardened and worked until dusk cleaning up the yard. I took long walks in my favorite park that features a lake with geese and curving paths along rolling hills. I went hiking in North Georgia to the top of Blood Mountain, passing irridescent green ferns and bright orange wild azaleas. I gazed at the full moon on a clear night. I signed up for a weekly fresh vegetable delivery from a CSA. I slept with the windows open so I could listen to the sounds of night and awaken to the calls of birds. I visited downtown Athens and shopped in boutiques and a used bookstore, and toured the state's botanical gardens. I caught up with my 94-year-0ld aunt and spent long evenings talking with friends. I drank wine with my parents on their deck. I popped popcorn and watched movies cuddled up with my husband.

It's so easy to love life. Cancer makes it easy. Because you realize how precious all the simple, day-to-day aspects are...and you don't take them for granted. I wanted to spend each moment this spring enjoying being alive and healthy--I wanted to savor this time.

However, this time is coming to an end...so let the whining begin as I dread being sliced & diced again.

I'm aggravated about being out of commission for another 6 weeks for recovery--meaning, no swimming, beach trips, bike rides, hikes and other summer fun.

Not to mention (again) that one of my best friends invited me to join her on a business trip to PARIS (free hotel for a week!). But, alas, she will be flirting with French men without me, while I will be having another rendezvous (naked, of course) with my 2 male surgeons. They are seeing way too much of me these days.

And, then, there's the chance they will FIND something and I'll have to undergo chemo. (This is where the music from "Jaws" comes in.)

I would like to restate that I voluntarily underwent BRCA surgery in February --being cut up in 10 million little pieces -- in order to avoid any chance of chemo. Now, I find out that in addition to being cut up into 10 million little pieces, I might ALSO have to endure chemo again...for 5 months...complete with metallic taste in my mouth, hair loss and steroids bloating my body.

Somehow, I have to get my head around the fact that I may be looking like Shrek again.

Recently, I came across an editorial cartoon I had clipped from a local newspaper years ago. It's an illustration of a woman hovering over her husband and the caption says:

"You wouldn't be so tense if your job produced something meaningful, the spectre of death wasn't stalking you, constant crushing debt didn't have you in a stranglehold, and the memory of your distant youth wasn't making a mockery of your present existance."

Well, that about sums me up at the moment.

A Draining Experience

Remember the 1960s movie "Born Free," in which the theme song goes:

BORN FREE, as free as the wind blows,

as free as the grass grows

born free to follow your heart.

Well, you can substitute the words "DRAIN FREE"...

Once you get your SIX drains removed, you won't know what to do with yourself!

Great Expectations

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

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

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

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

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

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

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

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

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

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

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

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

Every Day

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

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

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

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

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

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

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

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

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

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

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

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

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

Hear Me Roar

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

So, there, Irene! Take that!

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

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

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.