Pat Battles A Wolf

2006-06-22T18:02:00.000-06:00

DEDICATIONS

I owe so much to so many. Without the love and help (not to mention extreme patience and fortitude) of countless armies of angels, both human and celestial, who have dared to enter my life and care for me - I would never have lasted long. Even before cancer! These folks know who they are (or should), and I will love and honor them always.

I do not dedicate this book to them.

Rather, it is dedicated to all of you reading these pages. It is my fervent hope that I do not know you, that you are not a friend or a relative. For if that is the only audience I reach, then I will have failed. You will soon discover that I really hate to fail! I need to reach you, the stranger; the doctor or nurse, or nurse's aide; the nervous and worried patient; the terrified, but determined caregiver, looking after your loved one; the moms, dads, brothers, sisters, best friends (even worst enemies), aunts and uncles, cousins, grandmothers and grandfathers; the teachers, professors and the bosses; indeed all coworkers. It is my most fervent wish that this story will help all of you. All of you have been touched by cancer directly or indirectly. And so it is to you that I dedicate this book - my personal cancer story - in the sincere hope that in some small way it will help.

A WOLF NAMED CANCER

There is a Native American story I once heard a long time ago as a little girl. I have been told I have Native American ancestry, so it struck a chord with me even back then. But when I was diagnosed with breast cancer, it brought an entirely different message to me.

This is the story...

A Native American Grandfather was talking to his grandson about how he felt.
He said, "I feel as if I have two wolves fighting in my heart. One wolf is
vengeful, angry and violent. The other wolf is loving and compassionate."
The grandson asked: "Which wolf will win the fight in your heart Grandfather?"
The Grandfather answered simply: "The one that I feed."

I have no intention of feeding the Wolf Named Cancer. Ever.

LIFE WAS NEVER CANCER FREE

From left to right then: that's my mother, then me as a babe, then me sometime in the 1980s. For me life was never cancer free. My mother, Kate, lost her life to cancer at the far-too-young age of 33, in November of 1955. She had just given birth to me the previous year, March 1954. I have no memories of my mother. Everything I have ever known about her I have learned from others. The problem is that since I eventually became her spitting image, many who had known her found it too painful to be around me - much less to tell me about her. But there were a few who could. And in this way I came to know Kate as a truly amazing woman who loved to laugh, loved children, loved life ... and who had an amazingly high pain tolerance!

You see, my mother did not go to a doctor until it was far too late to save her. Somehow she hid the pain from everyone! Why did she wait so long? Try to understand that back in those days "cancer" carried the same negative stigma as AIDS did when it first appeared. Cancer was a filthy disease that only bad or evil people got. We know this isn't true, but back then far too many folks did believe this way.

I was not told straight off that I was raised by a stepmother, but from the moment I learned the truth - and the truth of what had taken my birth mother from me - I spent endless hours at the library researching cancer generally and breast cancer specifically. I knew with absolute certainty that breast cancer would visit me one day. So I researched, and I mentally rehearsed countless "what if" scenarios, examining choices and also examining if I truly had what it would take to make the more difficult choices. I knew some of my choices would not be conventional.

Here are two photos of me and my son Patrick, just before my cancer diagnosis.

THE WARRIOR WOMAN IS CREATED

I am the baby of my family, and I am the only girl. Five years separate each of my siblings and I: 10 years between my oldest brother and me and 5 years between my other brother and me. Oddly enough I was the wild one! While both of my brothers led relatively routine, safe and sane lives - I was the one riding motorcycles, hanging out with unsavory characters, going through an angry rebellious stage that rivaled the Chicago riots, shooting pool in biker bars, surviving years of serious alcohol abuse, and jumping from job to job rather than "knuckling down." One of the many jobs I held was a 5 year stint as a security officer at a state run mental health facility. It may not be common knowledge but these institutions were (and still are) refuges for the criminally insane (or those sly enough to fool the system into believing they're criminally insane). At the time I was one of only 5 women security officers in that state; not a lot of women were interested in quelling ward riots, evidently!

I have since come to realize that my wild, angry, rebellious "tough as nails" nature was likely born from a conviction that cancer would inevitably knock on my door - and that I just might not survive.

To my amazement cancer did not knock on my door when I turned 33. Somehow I had convinced myself it would take me at the same age it had taken my mother. Great! You mean I might actually live? How long? That's when it hit me: I did not want to live another 20 or 30 years the same way I had up until then.

For one thing, I was really tired!

TRANSFORMATION - AND THE WOLF FINALLY HOWLS!

For another, something was missing. But what? Oh yeah: a husband, a child, maybe even a dog or two and a picket fence. In short - a life! A life was exactly what I wanted.

It was a long slow process involving many internal changes - and one spur of the moment move out of state - but by 1996 I had finally achieved it: My Life! The move occurred summer of 1995 and by then I had even achieved sobriety. Within just a few weeks I met my husband to be, and by December 1996 (at the ripe old age of 42) I gave birth to my first and only child, Patrick.

And still no sign of breast cancer! Yippee!

Life was awesome - until October 2001. I was 47 years old. Patrick was 4-1/2 years old. And that is when cancer knocked on my door!

I found the lump. In my right breast. At nearly 3 centimeters it was impossible not to notice, really! The terrifying part is that it was not there the night before, I swear! None of my doctors believed this absurd claim of course. But I got a good dose of satisfaction when they couldn't explain why their own battery of tests just a few short months previous had also failed to reveal anything!

So here I was, finally facing what I had feared all my life. A needle biopsy confirmed the lump was cancerous, and also that there was no discernible cancer in the left breast. But I had already decided that I wanted a bi-lateral mastectomy. I did discuss it with my husband, but mostly for feedback. He assured me he was perfectly okay with my decision and would staunchly support me.

He did, and is still doing exactly that.

DECISIONS, PERSUASIONS, SURGERY & MISBEHAVING

Convincing my oncologist and surgeon, on the other hand, wasn't quite as easy.

"There's no medical necessity for this," they argued. "Why not opt for a much simpler lumpectomy?"

They eventually came to realize that my choice indeed was not based on medical necessity, nor was it made with my brain. It was made with my heart. I had a 4-1/2 year old son. I was determined to raise him. Me. I was determined to live for him, and for myself. I could give cancer no quarter.

I had a 4-1/2 year old son.

I finally won my oncologist and surgeon over and had my bi-lateral mastectomy on November 29th, 2001. The pathology report indicated clean margins (cancer had not spread). This is determined by sending a sampling of lymph nodes to a pathologist during surgery. That report also indicated my cancer is called lobular in situ. Surgery lasted about 3 hours (or so they tell me)!

For the first 24 hours I was on morphine, after which I was switched to pain pills. For a surgery of this magnitude drainage tubes need to be a permanent body fixture for about a week, each tube ending in a collection bulb. I called mine "grenades" because that's what their shapes reminded me of! I was up and about within 24 hours, roaming the hospital hallways to see what kind of mischief I could get into!

Evidently I was too good at this, because I was sent home (with tubes and grenades!) the very next day - for a grand total of only about 36 hours in the hospital. For a bi-lateral mastectomy! Gotta love insurance companies!

HOSPITALS ARE FILLED WITH THE BEST HUMANS

I made a lot of friends in the hospital in those 36 hours, despite my penchant for mischievousness.

One of the nurses who cared for me on my first night (that first night is the roughest), came in the next night (on her night off) just to be certain she wouldn't miss me before I was released and to give me a hug and say good-bye.

Another told me that she too had a family history of breast cancer and she had also grown up, as I had, feeling certain she would get cancer one day. She said I had helped her because, in all the years she worked in hospitals and the medical fields, she had never known anyone to voluntarily opt for bi-lateral mastectomy when it was not medically necessary - but she had always thought she would want to do that. She just wasn't certain she'd have the nerve. She told me that now that she knew me, she felt better and stronger - about a lot of things. As you can imagine, neither one of us had dry eyes when that conversation was over!

Another worker, an aide, told me (while she was washing my hair for me) all about her own mother's struggle with breast cancer, and how afraid she was, both for her mother and for herself. We sat on my hospital bed and talked for a long time.

CHEMO: THE CHEMICALLY ALTERED MIND & BODY

For bi-lateral mastectomy normal treatment is to follow surgery with a course of chemotherapy. Radiation is not usually indicated unless the cancer has spread to such an extent that the surgeon doubts that surgery successfully got all of the cancer.

Here is something useful to know, and I tell you because they actually forgot to tell me! Chemotherapy induces menopause. Usually anyway. If the woman is very young when chemo is started, there is always the chance that menses will return upon completion of chemo. But young women should understand that there is a chance menses will not return naturally. So it is my strong plea to all young women to be sure to discuss all of your concerns, questions and future plans in detail with your doctor - so your doctor can be in the best possible position to help you.

If the woman is pre-menopausal, as I was, then the likelihood of menses returning is remote. In fact most often a doctor will recommend adjuvant therapy to ensure that menses does not return. Common adjuvant therapy is either Arimidex or Tamoxifen, but there are others, and as of this writing these are normally taken for 5 years. My chemo drugs were Adriamyacin and Cytoxin (sometimes called "A/C") one treatment every 3 weeks (providing my blood count had returned to acceptable levels).

Another thing I want readers to understand: Chemotherapy is a poison. It is designed to kill. Not you per se, but the microscopic and rapidly multiplying cancer cells within you. The only problem is - they haven't yet figured out how to make "smart" chemo!

Which simply means chemo kills nearly everything. I am not saying this to scare you. I just want you to understand that chemo is serious business, and you are not going to be the same person physically. Not during chemo, and most likely not for quite some time after chemo. Chemo can save your life. But chemo will change you.

One of the most debilitating side-effects is extreme fatigue. This is a fatigue unlike anything you've ever experienced before. It will be progressive - at first it won't seem like an issue at all, but by the last chemo session the effect will be debilitating. Chemo affects each person differently. A friend of mine goes skiing regularly. She did this before diagnosis, and after surgery/chemo she returned to it rather easily and quickly. I, on the other hand, experienced muscle and strength depletion so severe that by the time chemo finally ended I could not change position in bed without help. It took about 2-1/2 years before I was fully back to normal. I am a very rare case, so please don't think you are doomed. Just understand that chemo affects everyone differently.

Hair loss will occur approximately two weeks after your first chemo treatment. Don't be surprised if, after chemo, your hair comes back completely different than anything you've ever had before! And it is likely that it will keep changing on you! Mine came back curly. It is now nearly straight as a stick!

AVON'S 2002 60-MILE BREAST CANCER WALK

Immediately on the heels of my diagnosis I signed up to do the Avon 60-Mile Breast Cancer Walk in Denver the following August. I knew I was in for a rough year and I needed a goal to focus on. The walk was perfect - 72 hours/60 miles of hope, strength, generosity and love. Three days and two nights of declaring that cancer will not triumph -- not over me; not over those yet unaware of their cancers; not over those near and dear to you and me fighting this disease; not even over those who have already lost their battles.

Lack of money can not, must not, be allowed to be the sole determining factor on when a life ends.

For three days I was magically transported to another world -- a world that exists as we all know our world should exist -- a world of unconditional kindness -- a world where everyone holds her neighbor's needs to be more important than their own. For three days I lived among Angels!

I had completed chemo just four months before the walk, but I truly hoped to do the entire 60 miles. I crossed my fingers.

I ran into trouble on the very first day -- a hill. It was to be the first of many demonic hills but I fortunately did not know that at the time! What I did know is that my body and my feet were failing me. As walkers passed me, each of them offered to call for help. I of course refused. I'm not stubborn mind you. I'm determined. There's a difference!

Then a woman went zooming past me! Suddenly she stopped, turned around, looked me right in the eye and said,

"You and I need to do some serious stretching."

She wasn't about to take "No" for an answer so I obediently stepped out and did as I was told. After a little while I assured her I was much better. She ignored me! I tried again, promising not to get back in the walk until I had fully recovered.

Calmly she said, "And when you do I'll be with you. You and I will make it to the top of this hill together. I'm not leaving you until then."

I was mortified!! I did not want to be the one holding her back. She dismissed all my protests and did just what she said she would do. We did eventually make it up that hill. When we got to the top I asked her how I could ever thank her. She said simply, "Oh don't worry about that! You'll have plenty of opportunity to help someone else soon enough. That will be thanks enough."

That Angel's name was Deb.

Later that same day my opportunity to help arrived, but once again it was I who benefited the most...

Just about a 1/4 mile outside the day's lunch stop, I came upon a woman in obvious agony. Her name was Nora, and her knees were so badly swollen she could barely move. Despite this, she wore a huge smile and reassured everyone asking after her that she was doing just fine. I recognized my opportunity! I slowed to her pace and we crawled along in silence. Finally she smiled and reassured me that she was just fine. "I know," I said, "but I'm not!" That made her laugh - exactly the response I was hoping for! I asked if I could stay with her into the lunch site.

"And if I say no?" she asked.

"It was a rhetorical question" I retorted with a smile.

She laughed again, and on we went. Our much slower pace meant we could easily chat, and thus I learned that she had recently lost her brother to testicular cancer. They had been close. I stayed silent while she introduced me to her brother: his personality, how courageously he had fought his cancer all those years (15 years in all!), and how he had stayed positive and strong right up to the very end. When we arrived at the lunch stop I first helped her grab her lunch and then I helped her over to the medical tent.

I had this crazy notion that I would finish the day's walk, but the medic that bandaged me convinced me otherwise. I grabbed lunch and got on the bus that would take us back to camp.

Nora was already on the bus. She talked some more of her brother while we ate. Then, suddenly, she started crying.

I said, "This may sound like a dumb question, but why are you crying?"

She told me it was because she felt she had failed her brother!

"Now how can that be?" I asked, "Didn't I and all these folks on this bus just get to meet him and know how wonderful he was - because of you?"

The smile and the hug she gave me! Well, suddenly I didn't feel so bad about not finishing the day!

Despite the heat, hills, blisters and other injuries, this 3-Day Walk revealed only the very best in people. I thought, "Surely, somewhere, there must be someone grousing. Or trying to cause trouble. Somebody somewhere on this walk must have a personal agenda." At the very least I was certain there would be irritation or laziness. But in the entire 3 days I never saw or witnessed a hint of any. To be sure, there were tears: tears for the pain or losses of others.

We had a woman on crutches! She had broken her ankle three weeks before the walk, but she was determined to do as much as she could, even on crutches!

We had a man walk the entire 60 miles (temps 90 degrees +) in a clown outfit! Why? He wanted everyone to smile.

I completed about 30 of the 60 miles. I was bummed. But then I remembered the mileage never had been the point. It was about getting care to the financially underprivileged, and about helping people overcome the fear that prevents them from getting diagnosed early. My personal plea to anyone facing cancer: get diagnosed as early as possible so that you are the one making decisions.

NOW WHAT? ... AND OTHER PONDERINGS

After surgery and chemo I walked into my oncologist's office for a routine check-up. Once that was over, we got to chatting, as was our custom. Out of the blue I asked ...

"So now what? I mean - I've known all my life what to look for to spot cancer. But now that it has been here and we've sent it packing, what symptoms will tell me it has returned?"

I'm certain my doctor intended to be reassuring, but his answer left me cold. He told me they had no idea what to look for since it could come back anywhere as anything! Essentially he said I should be suspicious of anything that "comes on but does not go away." I was stunned! Before cancer I had been fearless. My frame of mind was that of a warrior preparing to flush out my enemy and do battle. I knew what my enemy looked like, and I was not afraid of the battle because I was confident I would win.

But this? This terrified me. It threw me into a dark terror and depression for months. But I never told anyone! Nor did I ever let on how I was feeling. My old over-confident self did re-emerge eventually, but I wanted to share this story with you in case you've received news that has affected you in a similar way. Please don't make the same mistake I did. There are all sorts of support groups available. You don't have to face your fears alone and silent as I did. Isolation and silence are as much the enemy as is cancer.

Remember earlier when I said that chemo changes you physically?

Well cancer changes you permanently. There has been a significant focus change for me. I am still competitive and driven, but these days I would much rather put my energies into helping others to succeed than to ensuring my own success. And although I still champion all underdogs and the downtrodden, I have learned to leave those alone who prefer to be left alone! I also now carefully pick and choose my fights.

Another focus change has been away from career focused, to being much more focused on relationships. All of my relationships are now enormously important to me. Good, bad or neutral - makes no difference. I spend much more time walking in the other person's shoes than I ever used to. And I listen more. I try always to remember that hearing is a function of the ears, but listening is a function of the brain and of the heart. I ask more questions. I hug a lot more. I send more e-cards. And when I err, I immediately own it or apologize, as appropriate. Why? For one thing I found it doesn't hurt!

I have started a blog and have a circle of blog buddies spanning the globe. I cook and bake a lot more, and at all hours! I read a lot more. And I write a lot more. I laugh a lot more. And I cry a lot more. I am no longer afraid of crying for I now know its secret. Crying is not about weakness, or terror, or despair, or devastation. Not always anyway. More often than not - it is (or can be) about gathering strength, or even deep rapturous joy! Or it can be about feeling love and caring so deeply there simply is no other way to express it but to cry. These days that is the crying I do - openly and freely.

KIDS SAY THE DARNDEST THINGS!

When I was diagnosed with breast cancer, my husband and I decided to be open and honest with our son, answering all his questions and talking freely with him.

Of course, we did have to put things in terms he'd understand. So "cancer" became "The Bad Thing inside mommy that could make her really sick." We explained the surgery details by explaining what a surgery was and reassuring him that I would not feel anything. And yes - we did explain to him that I would look different after the surgery and why. Lastly, we explained chemo as "The Army of Tiny Things that need to swim around inside mommy after surgery, looking for any tiny pieces of Bad Thing that might have been left behind. If any pieces of Bad Thing are found, it's up to this Army to kill them so they can't hurt mommy any more."

As all children do when given half a chance, Patrick did amazingly well through everything. And he provided many laughs! I remember one of his visits to me in the hospital ...

"Mom, why is there a needle in your arm? That isn't where the doctor was 'sposed to operate, is it?"

Once, during chemo, his kid logic kicked in and he asked ...

"Mom? How come you're the one so tired and sick all the time? I'd think it'd be that Army of Tiny Things that'd be tired - after kicking the Bad Thing's butt and all!"

Life went on routinely for about a year and a half or so.

Then one day, as I was working in our office at home, he asked if he could come in. "Of course", I said (he was now nearly 6). He had that pensive look on his face so I prodded: "What's up? Something on your mind?" He stalled for a bit, but finally started talking about my surgery. Wow! I had thought this was ancient history! I perked up and paid attention. His entire conversation was a hesitant almost shy recount of everything he remembered about that long-ago event. I confirmed every time he remembered something correctly. But I was confused. I could not figure out where he was going with this! I knew taking a trip down Memory Lane wasn't it, but I couldn't for the life of me figure out what was bothering him.

Finally he fell silent, looking at me and shuffling his feet.

"What, Honey? What is it?"

"Nothin'. It...it's nothing'."

"Now come on - you know you can tell me anything, right? What's on your mind?"

"I...uh...unnnhh...it's nothin'."

"You sure?"

A final kick of the foot and then without warning in a frustrated 6-year-old voice:

"It's just that it's been an awful long time and all...and...and..."

"And what, Honey?"

"Well...I was just wondering when they're gonna grow back?"

I was reduced to giggling so hard tears were streaming down my face and I was gasping for air! It was quite awhile before I could speak coherently!

THE HILARITY OF BREAST CANCER & SPRAY DEODORANTS

If you're thinking this is going to be my warped view on the oh so popular debate as to whether deodorant causes breast cancer or not - you are wrong!

It's much funnier than that!

Remember back when I explained that a sampling of lymph nodes are sent off to the Pathologist during surgery? The thing is, those lymph nodes don't much like being removed. So they exact their revenge by leaving something in their place: Lymphedema - unpredictable swelling, often accompanied by continual numbness.

My nodes were removed (not all of them - but enough!) from my right side. Due to the swelling from Lymphedema, I sometimes feel like I'm walking around with a holster under my right arm pit! But more prevalent, at least for me, is the constant state of numbness since surgery. The entire area from my right underarm area, clear down to mid ribcage, is entirely numb! This one phenomenon is responsible for giggling on my part nearly every morning! My husband has become accustomed to it, but I'm pretty sure my dogs are permanently traumatized!

What on earth is so hilariously funny, you ask?

You see, I prefer spray deodorants. So. When I spray my left side, it's just business as usual. Pretty boring stuff. A bit cold perhaps, but otherwise boring. But the minute I spray that right side the fun begins! Yep, you guessed it - nothing happens! Absolutely Nada!!

Confused? Having a hard time seeing the funny? Try putting yourself there...

Your finger feels the pressure of pressing the nozzle down...

Your ears hear the spray coming out...

Your eyes even see the spray coming out...

And your nose smells the spray itself.

All senses are fully engaged. So naturally your feeble little brain is expecting to feel the spray!!

But ... Zilch. Nothing. Absolutely Nada!

The type of nothing that just does not compute!

So what does the oh so logical brain do?

It tells you to keep spraying until something ( a n y t h i n g ) is felt!

We must, I am certain, go through far more deodorant than any other household. Simply because I can not stop giggling - or spraying! Ahhhh ... who cares! To be able to start my day off giggling, confounding the dogs and making my husband wonder if there's an insane asylum nearby with a 24-hour emergency room.... trust me, it's more than worth it!

LIFE SINCE DIAGNOSIS, SURGERY & CHEMO

Although my life has never been boring, it has been a nonstop roller coaster ride since 2001/2002 - almost as though fate felt it needed to pick up the pace a bit! In the fall of 2002, shortly after the Walk, my husband fell at work. We did not know it at the time, but this seemingly innocuous nothing of a fall would eventually, through a bizarre series of events, render him 100% disabled. It would also introduce us to the odd and wondrous worlds of Worker's Compensation and Social Security Disability, further honing my already razor sharp Warrior Woman skills!

But it wasn't all hardship and difficulty. We traveled to Chicago and then on to Walt Disney World for Patrick's first real family vacation. The following spring Patrick and I took the Ski Train to Winter Park CO to spend a day enjoying a horse-drawn sleigh ride together and winter tubing. I also opened a gift shop in 2005, in addition to working a regular full time job. Both are doing well, and are helping to keep me out of trouble! Also, there was deep, satisfying joy in becoming a Grandmother to my beautiful granddaughter Rose (she's in the elf outfit - that was her first Christmas), courtesy of my stepson and his wife, and then a Great Aunt to little Gretchen (sleeping), courtesy of my nephew and his wife. And just look at how much Patrick has grown (3rd grade photo)!

TRUCE?

I began this story with a Native American parable of two fighting wolves. In the ensuing pages one of the wolves transforms into a Warrior Woman - me. It has been a long and exhausting battle, and not without moments of trauma, drama and even, I admit, dark despair. But there has also been great courage, awe inspiring transformation, and a daring journey inward that only a few ever experience. Who Wins the Fight? The simple truth is that where cancer is involved no one ever knows the answer. I am looking forward with happy anticipation to my 5 year survival anniversary on March 31, 2007. I finally feel strong, and good, and confident that I will not only live to see that milestone, but many more. But the honest truth is I have no more idea how much longer I have than any of us do. The Wolf and I have called a truce. For now.

While I was fighting furiously to survive, another too dear to me for words did not win her battle. The green mountain photo on the cover of this book is her view - the view from her final resting place. I can not describe the pain of that loss to you. I can only beg that if you think you are now facing The Wolf Named Cancer, please get diagnosed as early as possible - and then make only those choices that are right for you. No one else matters. It is not them facing the Wolf, it is you -- fight or don't fight. All decisions are yours and yours alone to make. But please don't ask me, or those who love you, to support choices forced on you by cancer because of waiting too long.

Pat Battles A Wolf

Intro to My Book ...

Pat Battles A Wolf