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

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.