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.

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.

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.

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.

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.

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.