Introduction

This is our family story. We have chosen to present it in this forum as a means to share with others both the heartbreak and joy of our daily struggle to keep my loving wife and my children's adoring mother alive. This is by no means an attempt to garner attention or pity. We simply want to share with others some of the trials and tribulations of daily life. We realize that there are millions of families just like ours. We simply hope that someone out there will read our story and realize that they are not alone in their struggles and that goodness indeed can be found under the shroud of this evil disease.

No words can accurately convey the many emotions that we have experienced during Monica's day-to-day battle. Nor can the pictures and movies below show you what is really happening inside our very souls. But by presenting this page to the world, we hope that by absorbing yourself into our life, you may find a beacon of light in your own life. We hope that people will not simply focus on the bad things. We want people to know that no matter how hard our family has had it, greater things will come from it. No matter how hard this disease attempts to break our souls, if fails miserably. Yes, it may mutilate us. Yes, it may fatigue us. And yes, it may cause us to question our faith. But one thing is certain: it cannot beat our spirit.

This really is Monica's story. After all, if it wasn't for her dilemma, this page would not exist. She has been kind enough to let me post it to the world. It is her mission in life to help others. She has agreed to let me speak for her. I can only wish that the words I write accurately reflect the truth and provide some form of inspiration to all who take the time to think about her place in this world.

For many people who have been affected by a diagnosis of breast cancer, be they the person afflicted or a loved one, hope may be all that is left. You will find over time that hope goes beyond finding a cure. Hope is the driving force that keeps us all moving forward.

Hope can be elusive, but it is not unattainable. Everyone must remember that hope isn't a single little tidbit of grace. Hope is a collection of little miracles that feeds your spirit.

For the Cooper family, our "collective" hope is based upon our wish to continue to live our lives just as every other healthy family. For Monica, hope means seeing herself as a fully functioning member of society well into her golden years. It means seeing her oldest son surf the shores of North Carolina, or to see him lead the symphonic band in school. It means seeing her youngest son kick a game-winning field goal in football or in watching him score a game-winning goal in hockey. It means seeing both of her sons to grow up to be adults and to marry. Last, but certainly not least, it means someday holding one of her grandchilden in her arms.

Hope means different things to different people. But the common theme with all of us all is that hope is borne of the inborn desire to live to see, to hear and to touch the things that we hold dear.

Join us now in our journey. The road is guaranteed to be bumpy, but there there are many pockets of goodness all along the way. You'll see. Those little pockets of goodness are the realization of a small gift of hope.

As we have learned, life is worth living regardless of personal tragedy. Breast cancer, like any other life-threatening disease, has the power to destroy a family. It has inflicted more than physical damage to Monica. It has strained us emotionally, socially and financially. But even through all of the pain, this damned disease has failed in its mission. It has brought us together in ways that most other families may never experience. We look at each day as a gift. We look at each day as an opportunity to give. Nothing is guaranteed in this life. And we have learned that the best way to fight this affliction (or any other tragic circumstance) is to rise above our own self to help another less fortunate and to attempt to conquer that which is larger than ourselves.

The disease itself is undoubtedly devastating, but the lessons that one learns along the way, and the goodness that sprouts up from the ashes is what keeps our family all moving forward. The measure of survival is not necessarily a cure. It is our family's ability to make it through whatever God has in mind for us. We will survive regardless of the outcome. We have hope. And lots of it.

Our Journey Begins

On February 9, 2001, at the age of 35, Monica was diagnosed with stage II+ breast cancer.

We will never forget that cold and dreary day. Monica and I sat in shock as our surgeon read to us the results of Monica’s breast biopsy. "You have cancer."

After the surgeon left us with the news, Monica and I wept. She kept asking herself the same question over and over again: "How can this be? I'm only 35..." I sat in a catatonic state. I could not give her an answer.

As with anyone else who has heard those three sobering words, our hearts broke into pieces. Our minds were overwhelmed with darkness. The conversation then concluded with the infamous: "How long do I have?" With what seemed to be a preprogrammed response, the surgeon said, "50-50 in five years." I remember thinking to myself, "That's it?!?!"

Monica, being the stronger one that day, began putting together in her mind the framework for her treatment. I remember basically her shaking me from my stupor and saying, "Honey, this is what we have to do..." I heard the words, but I didn't listen. I was too busy trying to "fix" this in my own head. You see, this is what guys do.

"OK," I thought to myself, "A lumpectomy, some radiation and we're outta here..." I echoed my babblings to Monica and she sadly shook her head. "No, honey. This is not going to be that easy. There are too many..." She was already on it. It would prove to be a skill that she would use to know just when things weren't right. Perhaps it's a woman thing. Regardless, she has told me and the many medical professionals who have treated her: "I know my body. I know when something isn't right."

From that day forward, Monica was in the driver seat guiding herself to treatment after treatment after treatment. She single-handedly took control of her life and spent every ounce of energy that she had to keep herself together for me and her boys. I fell back to the only thing that I knew how to do: keep working and keep the family functioning as close to "normal" as possible.

The Days that Followed

By the summer of 2001, Monica had endured a modified radical mastectomy, four cycles of AC, some 40 shots of radiation and the first phase of her reconstruction effort. What has become our biggest date with destiny, was 9/11/2001. Monica's recieved her final round of AC as we watched the tragedy of that day play out on TV.

I remember thinking to myself that day "Now more people will understand just how fragile our lives really are." It was no attempt to downplay the events of that day. It was my way of saying to the world that we are all suffering. It's time that we all woke up and realized just how important our loved ones were to us.

For the next two years, Monica's situation seemed to be under control. But in the summer of 2003, Monica experienced two bone fractures. One occured after she dismounted her bike after a training ride with our oldest son. She fell to the ground when her foot got caught in the peddle strap. She braced her fall but ended up breaking her coracoid process in her left shoulder. For those who don't know what that bone is, it is a little bone sits under the clavicle. The pectoral muscle connects to it acting as an anchor for chest and upper shoulder contraction.

Monica's orthopedic surgeon told us the only way people break your coracoid process is if that person suffers a puncture or shoulder compression injury...not from a fall. Knowing Monica's history, he suggested an MRI to confirm what Monica already knew in her heart. It was now in her bones. The cancer had gotten into her bones and weakened them to the point of suffering a stress fracture with ordinary force.

What was worse than that simple fracture was the knowledge that the disease had officially mestastized. Earning the status of metastatic disease was devastating news.

To add insult to injury, while spending a day with our family at a local water park a few weeks after her initial break, Monica suffered a second fracture of a part of her humerus (upper arm) going down a water slide .

Monica shortly began a new battery of radiation to zap the cancer in her bones. Further testing showed involvement in her ribs, hip and shoulder complex. What sprang from her initial fall was the knowledge that the disease had progressed. It ushered in another treatment strategy that focused on bone density enhancement and disease stabilization.

After he radiation treatment, we settled into the now familiar pattern of sit-and-wait as the disease took it's characteristic "breather." Monica sat through a three-week cycle of bone drips designed to strengthen all of her bones.

It wasn't long before the disease progressed again. Monica once again "had that feeling." She began complaining about increased bone pain and a gut feeling that it was back again. An uncharacteristic third trip to the radiologist helped her to control the disease in her bones.

Her attempt to control the bone pain was dealt a major set-back as the medication that she was taking to control her discomfort (Vioxx) was pulled from the market due to complications in a small subset of elderly users of Vioxx. This action by the Fed proved to be extremely difficult as Vioxx was the only medication that worked for her.

To Monica, the Fed action to withdraw Vioxx from the market was yet another bump in the road. She now had to find something that would work as well. It took a year for her to find the right combination to keep the bone pain in check.

Yet another year passed without progression of the disease. In September of 2005, the disease once again took hold of her bones, pelvis, ribs and now her liver. Her treatment track switched course from a focus of bone stabilization to soft tissue disease control. Enter the drug Xeloda.

By Christmas of 2005, the Xeloda had remarkably cleared up most of the disease. PET scans showed remarkable progress in her "hot spots." Monica had beaten the effectiveness odds and showed distinct reduction of disease concentrations. We celebrated this fantasic news by taking a group of our neighbors out to dinner. While that brought us all a little Christmas miracle, it would become a lesson in what we would come to label cautious optimism. For by the Spring of 2006, the disease had once again mutated and become resistant to the Xeloda.

This has been our most painful lesson. We have learned that regardless of any news of improvement, at some point in time, this demon disease will change its molecular design and live to torment us again. We have also learned that we HAVE the tools to keep it at bay. The anghuish that remains is our fear of when that last treatment strategy fails.

Where We Are Today

Skipping fast forward to today, my indestructable wife remains stage IV and fighting with every ounce of energy for me and her children to stay in our lives.

In April of 2006, Monica has once again lives with little hair. The disease has once again taken up in her liver, her new chemo regimine has left her fatigued, anemic, neutropenic and emotionally drained. Even so, she is happy to be alive. Sure, her new hairdo is not what we had hoped to revisit, but with the experience of her first bout under her belt, we have all learned that hair is hair. Without sounding cliched, the things that make the person on the inside is what makes them beautiful. OK, admittedly that's sappy crapola, but the clear fact is that she's damned hot with no hair! You don't believe me? Check out her picture below. We have all accepted her appearance and she feels comfortable just hanging out with a ball cap. Of course, it helps when I keep my dome cut tight! Today we are blessed to know that once again her disease has been stabilized. We once again go on with our lives with cautious optimism. We have her here. We have her now. We will continue to make memories that will last all of our lifetimes. Tomorrow, things may once again set us back, but we have to keep the faith that all of these little bits of hope will turn to a cure.

Life's Cruel Lessons

Five years have passed since that fateful day. While we still do not know the answer to that question of "Why me?", we understand clearly that we are not alone. Cancer doesn't follow any rules. It doesn't care about what race you are. It doesn't care about how rich or poor you are. It doesn't care that you have a family. And it doesn't care how old you are. Cancer is a psychotic beast. It is illogical in its actions. It is an evil demon that has no mercy. It simply doesn't care.

As to "Why me?" Only God knows...and he ain't telling. My theory is that he wants an angel back. I'm fighting tooth and nail to keep her here. Heaven can wait indeed. I suppose that puts me on the fast track to hell, but that's OK, I have the peddle to medal [insert track of AC/DC's "Highway to Hell" here!].

As for other lessons, we have learned that the mystical age of 40 is a purely arbitrary number as it pertains to female human physiology. Today, oncologists seem to be treating more and more younger women. We now look back and mock the standard government and health insurance pitch: Mammograms at 40! Just who came up with that? Obviously some statistically obsessed government beaurocrat, but that another subject entirely.

Detection of breast cancer in younger women is sadly becoming more and more common. Some specialists attribute this recent phenomena to earlier detection, while others tend to attribute it to our chemically-plagued lifestyles. We simply don't know the answer to why. All we know is that it is what it is. And it is evil and strikes without prejudice. The lesson here is: demand it when you want it! Don't wait.

Looking back, we also now know that this 50-50 timeline is pretty much the standard prognosis in the world of mid-stage disease. The thing is that there are no absolutes. There are no cookie-cutter timelines to take you from diagnosis to death. There are only statistics and opinions. The oncologists cannot tell you anything other than what is generally accepted in the world of oncology: that famous statistical benchmark of 50-50 in five.

What took us five years to realize is that technology is constantly changing, treatments change, and the eventual outcome all depends on the individual's willingness to fight back. Also, the 50-50 rule is based upon data that’s probably 10 years old. It would have been nice had we known that on that first day. It would have saved us all from a lot of pain along the way.

There are many more lessons to mention, but some must remain private. For each and every person exposed to this disease, not all lessons need public attention and scrutiny. Dealing with family tragedy is a deeply personal experience. Your faith will be tested. Your family bonds will be tested. Your friendships will be tested. And your own measure of life will be tested. One thing is certain, however. You will find that by looking for help, you will have taken the first step to learning the skills required to survive either as the cancer patient or as a caregiver.

What It Means to be a Caregiver

This "chapter" of our story deals with the things that I (the cancer husband) had to learn along the way about being a caregiver for my wife.

Here's the cold, hard truth: There is no user's guide or owner's manual for 30-something (especially male) caregivers. There are no pills that you can take, no classes in school, or any surgery (sorry ladies, keep your lobotomy jokes to yourself) that turns us into expert caregivers. As a caregiver (regardless of the gender or situation) one has to learn how to do it all with no time to practice or master the skills of being someone's "rock" - as Monica calls me.

I confess to the world today that in the years leading up to 2004, I was NOT the best caregiver to her. In fact, I was downright sh*tty to her. I spent my life running as fast as I could away from her. I hated this disease, I hated what it was doing to me and I was resentful for what it had done to our home, life and future. I had no control, and for a guy, that it the worst feeling. What good was I if I couldn't turn a wrench to fix it and make it better? What kind of a husband did that make me?

Looking back to the winter of 2001, I buried her in my mind. It wasn't that hard to do in all actuality. I spent hours on-line reading page after page of medical journals and case histories. I convinced myself that she was going to die. That's all there was to it. That's what all of those documents told me. Yes, there were times when I WANTED her to die so that I could move on. And you thought the cancer was evil?

It took me until the summer of 2004 before I was able to confront my fear, realize that it wasn't about ME and find healthy ways to deal with her disease.

After nearly breaking our marriage in two due some very bad personal choices and my own cowardice, I was able to get my head on straight and commit to her and myself my deep desire to team with her to crush this bastard demon. I was fortunate to work with one of the best cancer therapists in northern Virginia, who instilled in me the power of the human spirit. There has been no looking back. Without her challenging me to reach deeper in all aspects of my life, I would have failed. I have her to thank for pulling me out of sewer and into the position of master caregiver.

The lesson here folks is having the courage to ask for help. There is no reason that anyone should be expected to tow the line by his/herself. Put your self BACK into control. Get the help. You family will be happier for it.

Looking Forward

Today, we spend each day sharing with the world her...our story. As mentioned above, the words and pictures here are to show to the world that there is good even when the cards are stacked against you. We don't intend on making ourselves to be the poster children of breast cancer. We are merely one family with the opportunity to show to the world that this disease need not crush you inside. We have recieved email from hundreds of wellwishers. I can only ask that those same folks echo their wishes and thoughts to the thousands of other people in similar situations. Take the time to share this site with those you know. Spread the word that cancer need not keep you in a strangle hold. Take a moment of time to give to someone else. Be willing to become a weapon that can be used to conquer something bigger than yourself.

Friends and family, do not pity us. This is the path that God has chosen for us. Yes, I will admit that I am in a bitter fight with Him right now. He wants his angel back and I am fighting with every ounce of energy that I have to deny Him of that desire. I'm on the fast track to Hell perhaps, but it's my turn to fry.

We as a collective soul may never understand the reasons for this plight, but we are all a stronger family for it. This disease, like all of the other deadly diseases in our world, is faulty in its design to kill us all. It will continue to fail to crush the human spirit and that is what continues long after our physical body is taken away from us. This disease will continue to fail in its ultimate goal even though the pain in which we will all certainly endure along the way is unbearable at times. We as a global family must grasp what keeps us all moving forward. We have a mission to ourselves, to our own families and to the people that we do not know to make our world better.

We thank all of our family, our supporters, and the hundreds of strangers that we will never meet face-to-face for your kindness and good will. Take this time to walk the walk. Welcome to our world.

aka. Mohawkman

Our Picture Album

The images and movies that you find here are a glimpses into the history of Monica's personal journey and of our family journey. It contains shots and clips of Monica, me and our family. Let the images speak to you. Look into our eyes to see what life has to offer. While this disease continues to hold us by the throat every day, remember that we have been able to counter its grip on us through the power of your thoughts and prayers, the talents of our many doctors, advances in modern technology, the various cancer research and treatment facilities in the northern Virginia area, foundations such as the Susan B. Komen and Avon Foundations, the American Cancer Society, and God. Monica would not be alive today if any of these things were not part of her community.

Monica and our boys prior to the
Washington DC, Komen Race for the Cure (2003).

This is the tatoo of Pandora that was inked on my right leg in 2002. The pink ribbon
symbolizes the obvious. The anguish on her face symbolizes the pain of Monica's disease.
The two stones on her right ankle symbolize our two boys, and the three stones that adorn
her neck symbolize faith, technology and Monica's undying will to live.

Monica and I taking a break somewhere along the
Washington DC, Komen 3-Day Walk route.
August 2004. This was the birth of my alter ego "Mohawkman."

Monica and I doing what we do most during our walks together.
Somewhere along the Washington DC, Komen 3-Day Walk route.
August 2004.

One of my Chemo Warriors.
Somewhere along the Washington DC, Komen 3-Day Walk route.
August 2004.

At the finish line of the Washington DC, Komen 3-Day Walk route.
August 2004.

Monica and I right before the
Washington DC, Komen Race for the Cure (2005).

The Cooper family vacationing at the Outer Banks of North Carolina

Me and my girl on a cruise to Bermuda.

Monica and "Cow Guy"
Washington DC, Avon 2-Day Walk 2006.

Faced with losing her hair for the second time, Monica cut off her long locks
and donated them to Locks of Love. April 29, 2006

Monica sports her mohawk...courtesy of our eldest. May 5, 2006

Monica and I after cropping her hair in anticipation of what her chemo would do to her anyhow. May 5, 2006

Movie Clips from the Washington DC Avon 2-Day Walk. April 28-29, 2006.

A great crew member wakes us up.
Off we go!
Monica meets an old friend "Cow Guy"
Monica meets a fellow "Got Mets" survivor.
The infamous Hill from Hell.
Monica echoes the "Big Lie."
How prophetic this clip was to us. Monica would ride that very ambulance later that night.
The "Caboose" (the final walker of the day) enters wellness camp with "Cow Guy."
Monica returned on Sunday to participate in our Great Victory.

Monica speaks at the Herndon, Virginia Relay for Life. June 9, 2006.

Monica speaks at the 2006 Herndon VA American Cancer Society Relay for Life.