BOO!

Courage is not the absence of fear, but rather the judgement that something else is more important than fear.                                                                                        -Ambrose Redmoon


How appropriate to be thinking about the feeling of fear on Halloween.  No matter how hard I try the list of things that fill me with terror continue to grow.  Loving individuals sent positive thoughts while I was going through cancer treatment and the one above kept popping up over and over.  I would never dream of calling myself a courageous person, but this quote made me rethink the concept.

We live in a scary world.  Watch the news, read the paper, or chat with a neighbor and you are probably going to walk away a little shaken up.  Darkness is all around us, therefore we have to make a conscious decision to seek what is good.  Sitting across from a doctor telling me the horrors that were to come made my spirit tremble.  Looking at an MRI of my precious child's brain and hearing he will face a lifetime of challenges filled me with anxiety and dread.  Watching my cherished father leave this world left a scar on my heart that I doubted would ever heal.  I cannot pretend these horrible events did not occur, but must I face each day waiting for the next nightmare to begin?

When I experience panic I have learned to stand firm in something that I hold in such high esteem that a shadow is cast over the fear.  My faith and relationship with God allows me to work through my personal battles and discover the courage I desperately need.   2 Timothy 1:7 says...For God did not give us a spirit of timidity, but a spirit of power, of love and of self-discipline.   I have learned that God's strength is made perfect through my weakness, therefore through Him I have what I need to get through the tough stuff.   Some mornings I wake up and the heaviness sets in and I have to talk myself into feeling powerful, loved, and discriplined.

Next time you feel like you are in one of those horror movies where you are running wildly, screaming, and glancing behind you to see if the monster is gaining ground....take my advice...STOP!   Even if you cannot get rid of the creepy feeling entirely, decide that you can find the courage to not just survive but to conquer.

Happy Halloween......

A TIME FOR CHANGE

Yesterday I went to my 5 year checkup with my doctor with a list of complaints/worries to address with him.  There has to be a pill, patch, or elixir he can prescribe to take away all my discomfort and bring peace and wholeness to my existence.  I knew I was in trouble when the nurse started reading through some of the notes from my last appointment three months ago. 

Nurse:  Have you been taking your vitamin D and calcium daily?
Me:      Can you remind me again how much I am supposed to be taking?

Nurse:   How is the meditation and yoga working to control the anxiety and hot flashes?
Me:       I have been meaning to start that program...have read many articles about the benefits.

Nurse:   Is the Melatonin helping you sleep?
Me:       I have been sleeping horribly, but have not tried that supplement yet.

Nurse:  You have been exercising and eating well, right?
Me:      My kids have been out of school but now that they are back I can get right on that goal.

By the time Dr. Marcom walked into the office I openly admitted that I had done very little of the things that he had suggested. There is only one reason that I can come up with to explain my noncompliance...change is hard.  Maybe it is part of our genetic blueprint, but I see the inability to practice self care in many of my friends.  We wonder why we are so tired, depressed, anxious, and overwhelmed but refuse to invest in our own well being.  We willingly spend money on the outside package.  New clothes for every season, manicure, highlights for our hair, and makeup to give us a fake glow.  Our bodies and souls are crying out to be nurtured.  I have the tools and time but not even a diagnosis of cancer has made me alter some of the destructive habits in my life.  Nobody can make you stop and recognize the damage that you are doing to yourself, but what if we embarked on this path of change together?

Let's pick one thing we are going to do in the month of November that is going to bring some balance to our lives.  Here are some suggestions....exercise three times a week, read an inspirational book, go to bed an hour earlier, start taking vitamins, stop drinking soda, read your bible daily, establish a prayer time.....the list goes on and on.  We have to live with intention and decide here and now that altering our attitude can greatly influence our actions.  I grow weary of complaining, trudging through the day, having little patience for my children, and waiting for the 8:00 hour to come when I can rest.  Christine and I prayed this morning about not letting our circumstances dictate how we lived.  Make up your mind that you are worth the effort and there is nothing that will get in the way of you making this one small change.

Okay...so I will let you know what mine is going to be.  I don't want to to do it but I am going to begin to use meditation and yoga to battle these hormonal symptoms I am experiencing.  I have no problem jumping on a treadmill or lifting a weight but it just seems like such a waste of time to practice breathing.  I have trouble with anxiety but would rather pop a pill to mask the symptoms than listen to my body and what it is trying to tell me...ugh!  I promise to share my new adventure into the world of mindfulness ...I am a little scared to see what has been hiding up there all these years buried under the craziness.

Let me know what you are planning to do for yourself in November so I won't feel alone.  Be strong and take care of yourself.

Psalm 23

The Lord is my shepherd, I shall not be in want.  He makes me lie down in green pastures, he leads me beside quiet waters, he restores my soul.

How about a little restoration?

THANK YOU LEE

I vividly recall my Mom sitting in a wheelchair holding a tiny bundle in her arms.  She motioned for me to come forward and meet my little sister, but I was far too filled with fear and uncertainty to move.  Once the new baby was settled at home, however, I fell in love with her.  Since I was 8 years older than Lee, our relationship was a combination big sister and mother rolled into one.  As a child LeeAnn sparkled with energy, creativity, and joy. We would spend hours playing in the imaginary worlds that she would create.  My youth would have been dull were it not for her magical gifts and through the years her spirit would continue to support my family.

We sat huddled on the bed together unable to comprehend how to move on without him.  The house was a whirlwind of activity as plans were made for the events of grieving.  I held her and promised that she would never be alone.  Hallow words coming from a 20 year old girl that had no idea how the future would unfold. I desperately wanted to be the caretaker that could ease the pain of those I loved.  The little girl that I vowed to protect would be the very person that would carry ME through my battles.

In 2005, LeeAnn was working as a teacher in New York and had just become engaged to her boyfriend Beau.  After years of celebrating marriages and the births of her nephews and niece, it was finally her time to take the spotlight.  I am ashamed that I never hesitated before I asked Lee to leave her job and Beau to come take care of me for the three months that I would endure cancer treatment.  My oldest son, Jake, was just starting kindergarten. Grant was almost 3, but still could not walk and had therapy several times a week.  Both of them needed a full time Mom and I doubted I would be able to even take care of myself.  During a phone conversation I cried out to my sister, "I need you," and so she pushed aside her world and came to hold up mine.

You will have to wait for my book to be published to read about our three months together.  In an instant LeeAnn had to become a nurse, mother, counselor, chef, housewife, friend, and angel.  I would love to hear her account of our time together...but I will tell you from my point of view I was a HORRIBLE patient.  In the morning, as she got the kids ready for school, I would call out from my bed and criticize the outfits she had put on the children.  I had to remind her how to comb their hair, to vacuum the carpet if a crumb fell on the floor, and when to make the perfect snack that would settle my stomach during chemo.  I am laughing as I am writing this because the only way that Lee and Matt could make it through the day would be to drink large amounts of red wine and trade stories about "the patient."

There were moments that were so raw and precious that I shiver just thinking about them.  Sitting on the cold bathroom floor while she held me as Matt shaved my head.  I was extremely self-conscious about anyone seeing my scarred chest or bald head.  One day as we sat waiting for the oncologist she looked at me from the across the room and whispered, "you are beautiful."  Perhaps the best gift she brought to me was her soon to be husband Beau.  It would be impossible to detail the mysteries of Bo Bo with a short blog...but there has always been an ease and comfort that I feel in his presence.  When he would come to visit laughter would fill my home and I felt more alive than I had in months.  Both of them poured out their love and cared for my children in a way that enabled all of us to feel safe.  In the darkest moments of my life, my sister fed my soul and helped bring me back from the brink of disaster.

My sister is one of the most fascinating people I have ever met.  We are alike in many ways but different enough to keep me guessing about her next move.  I admire so many things about her but what I treasure the most is the fact that she is.... REAL.  She wakes up in the morning and washes her face puts on some gloss and leaves her curly hair to dry naturally.  That smile wins you over as she slowly draws you closer.   Her flaws are not hidden from anyone but only serve to add color and depth to her brilliance.  She loves to argue, is obsessed with food (especially pork), and can find the dramatic element in even the most mundane of activities.  When I am in her presence I simply want to be cuddled and mothered.   I love LeeAnn because she is my little sister, but I thank God for the little angel that has always been MY protector.




The Dynamic Duo of Lee and Beau Beau



My sister and me





  

WHAT'S UP DOC?

I hated the crowded waiting room.  If you were sitting there you either had cancer yourself or loved someone that was facing the disease. I would pass the time reading books, magazines, the bible...anything that could transport my mind.  My Mom usually came to the appointments with me and she had a wonderful ability to fill the hours with entertaining stories about nothing important.  Most of the first visits were a blur. The doctors could have been speaking another language.  I looked at their detached faces and surmised that I was just another statistic- they were simply doing their job.  In the months to come, however, I discovered that each of them would stand beside me as we went to battle together.

The men and woman that cared for me provided the perfect balance of truth, guidance, strength, and understanding.  Dr. Leight, my surgeon, looked more like a retired athlete than a doctor.  If he would only crack a joke or smile I could pretend that we were not speaking about removing my breasts.  As months passed, I grew to appreciate the calm strength that he brought to my world.  Dr. Coniglio was the physician's assistant to my oncologist.  Talking to him was like listening to a beautiful love sonnet.  During our visits, he had a way of weaving stories about his family, former patients, and my own health issues that touched my heart. Dr. Zenn is my plastic surgeon...and he is such a character. I did meet him when I first was diagnosed, but I did not undergo reconstruction until I was healed from my other surgery and treatment.  Seeing Dr. Zenn and his nurse Jo Ann was like watching a movie starring academy award winning actors.  He is definitely the smooth talking, cool leading man and she is the best friend you want to chat with over a glass of wine.  I will never forget driving from the hospital  after my last visit with Dr. Zenn realizing he had given me back a piece of myself.   

It is truly an impossible task to try to capture my journey with my oncologist, Dr. Kelly Marcom.  He was the man that prescribed the course of treatment I would have to endure. On his laptop he created a survival pie chart that used studies to predict how long I could possibly live depending on certain medical intervention.  I hung on his every word and then dissected them again when I was at home.  Sometimes I would ask him the same question several different ways to try to trip him up. He was my life preserver when I felt like I was going under. I wish I could tell you that I was courageous and battled like a true champion, but in case Dr. Marcom ever writes a tell all book I better just be honest here and now... I was a pathetic mess.  All I did was cry during every appointment...no matter what he said to me I had made up my mind that there was no hope.  Dr. Marcom was at Duke when my father received treatment and is the Director of the Hereditary Cancer Clinic.  There is no doubt in my mind that I would not be writing these words today if it were not for his knowledge and expertise.

Dr. Marcom has tried his best to get me under control over the past 5 years, but anyone that knows me well understands that impossible task.  One particular appointment I was in the middle of one of my emotional ramblings and he spoke the words that have altered my perspective.  He said, "Jamie right now cancer is like a ferocious lion.  You feel it behind you, breathing down your neck, and ready to pounce and devour you at any moment.  It is my job as your doctor to put that lion in a cage.  I can never take it out of your life completely, but it will be behind bars unable to hurt you."   The fear did not leave me instantly, but Dr. Marcom delivered on his promise.  He has been there during the ups and downs never once leaving me alone.   Most of my days are filled with the magical feeling that comes with simply living, but sometimes I hear the distant roars of that horrible beast and I begin to shake.  Instead of running to an unreliable source, I turn to the one that always tells me "like it is."  He now understands all my tricks and refuses to buy into the crazy world of Jamie Howard cancer patient.  We live in the moment always taking that next best step that keeps me moving toward healing.

Thank you does not even come close to capturing the gratitude I feel for my doctors.  The only thing I know to do for them is to try my best to live the life God intended for me.  These caring individuals have taught me that we are not meant to walk our paths in solitude.  No matter how strong and independent you are there will come a time when you need to reach out to someone for help.  All at once my world came tumbling down and friends, family, doctors, prayer warriors, and neighbors refused to let me throw in the towel.  Today, I can hardly make out those familiar growls above the sounds of celebration.



What do you need to put behind bars?



THE MANE EVENT

I admit that I loved the '80's.  The music, the clothes, and most of all the HAIR.  In my imagination I was the queen of the jungle with my wild mane of permed and teased tresses.  You might be thinking that was the style of the decade, but I had a hard time letting go and was sporting the same hairdo in 2005.  The thought of losing my hair to chemotherapy was frightening not only because I would be bald, but because so much of my identity was wrapped up in that mess. 

The doctor told me that my hair would fall out after the third treatment.  I remember going to the barber shop with my Dad when he decided to shave his head completely.  My Dad was never one to follow the rules, and in true Jim Valvano fashion instead of his hair falling out it started growing back during his treatments.  Secretly I hoped that would be the case for me, but each morning I noticed more strands on my pillow and less on my head.  My Mom, sister Lee, and I had gone to a local wig shop and purchased two wigs, hats, and scarves.  I had a long version of curly hair that resembled my old hair and also a short one that made me look like a punk rocker.  I could not take the waiting any longer, and so one evening I sat on the bathroom floor with a towel in front of me and Lee whispering words of comfort into my ear while Matt shaved my head.  Honestly, I have a nice shaped head.  If I had decided to lose the hair as a fashion statement it might have been okay, but the realization that this was one more thing that cancer was taking from me resulted in a much deeper wound.

Most of the time I wore caps that I had ordered from a cancer catalog.  The wigs were hot an itchy and I never felt comfortable wearing them.  My older sister Nicole invited me and the kids to the mall one day. Trying my best to capture the old Jamie I got dressed, put on makeup, and wore the long, curly wig to complete my look.  Being around the children always made me feel better because I could escape into their world of innocence.  As I sat eating lunch at the food court with my family I almost felt like this was a normal day and I began to relax and enjoy myself.  A man stopped by the table to greet my sister and they began chatting.  It turned out he worked with my brother-in-law and Nicole introduced us and as we shook hands my nephew decided that more explanation was needed.  Between burger bites he simply stated, "that is not my Jommie's (his name for me) real hair.  She is wearing a wig."  So much for flying under the radar.  Unsure of the appropriate response, the poor man just mumbled something and shuffled away.  Nicole and I looked at each other and laughed until our stomachs hurt.  Pete is almost 10 years old now, but time has not changed the fact that you never know what is going to come out of his mouth.

Laughter is truly the best medicine.  I left the mall that day feeling more alive and free than I had in a long time.   5 years later, I am still not used to my short, straight hair.  I long for the days that it took me an hour to style in the morning. I now understand that I was hiding behind many things in my life because I did not want the world to see the real me.  When I look at pictures of myself today I see my smile and a depth in my eyes that only comes from walking in the truth.  I don't have the energy to pretend any longer.  Just like Pete did that day when he called out something that wasn't real, I desire for God to reveal to me anything in my world that is false.  I am learning to embrace what IS rather than spending all my time wishing for things to be different. I carry that bald woman inside of me each and every moment...she was a warrior...she was beautiful...she was just plain old Aunt Jommie in a wig...she was loved.

100 MILLION REASONS TO BELIEVE

I remember when my father was diagnosed with cancer.  I was 20 years old and had just completed my sophomore year in college.  I left school so that I could spend time with my family.  We all thought that with my father's grim diagnosis he would spend his days at home surrounded by loved ones, but we severely underestimated him.  As his body grew weaker his spirit soared.  He never wasted a day asking the question, "why me?"  But instead, he thought to himself, "why not me?"  Why can't I use my voice to make a difference so that something good can come from my suffering?  And so he shared his struggle with anyone that would listen.

I was in the audience when he announced the establishment of The V Foundation at the inaugural  ESPY Awards.  He was weak and in pain and we doubted that he would be able to make it on stage.  He not only was able to accept the Arthur Ashe Courage Award, but he delivered the speech he was born to give.  He shared his spirit and essence with the world and inspired us all.  I sat there as a grieving daughter and the words just washed over me.  As he was helped back to his seat, he leaned over and whispered..."Did I do okay?"  I wanted to laugh and cry at the same time as I reassured him.

13 years later, I sat in my kitchen holding my bald head in my hands as I wept.  I had become my worst nightmare....a cancer patient.  My mother was making me something to eat and trying to encourage me not to lose heart.  My sister LeeAnn had left her life in New York to come care for my two small children.  The hardest part was the anger I felt toward my father.  I had inherited a genetic mutation from him that made me more susceptible to breast cancer and many other forms of the disease.  I thought he had left me alone when I needed him most.  As I sat there having my own pity party, I heard my father's voice as clear as if he were in the room with me.  He said, "We are starting The V Foundation for Cancer Research.  It may not save my life, it may save my children's lives, it may save someone you love."  In that instant, I realized that my Dad had not deserted me.  I had been given a second chance to live...one that he did not receive.  He knew that they key to saving lives was to fund cancer research.  He started The V Foundation for me and anyone facing this disease.

Perhaps you have not been personally touched by cancer, however anyone reading my words is a survivor. Suffering is an inescapable part of the human condition. I have discovered that through our pain we can experience miracles.  Through darkness we can find light.  My father showed me that there is a plan and a divine purpose for each of our lives.  When I start to doubt or fear I think about The V Foundation and I am reminded that there are:

100 million reasons to not give up
100 million reasons to hope
100 million reasons to believe in a world without cancer

Check out http://www.jimmyv.org/ to listen to the ESPY speech and see firsthand what has been done with the $100 million that has been raised because one man refused to give up.

March 4, 1993
Inaugural ESPY Awards

THE NOTE CARD

I have lists everywhere of items I need to buy, phone calls to make, things to do and not to do, and reminders for my forgetful chemo brain.  Most of the time the scraps of paper end up in the bottom of my purse never to be thought about again.  Whenever I find one of them I always smile thinking about my Dad and his amazing index card.

My Dad's mind was constantly whirling and so he would write down his never ending thoughts and put them in his pocket.  Whenever my Mom would do the laundry she would find all of his tattered notes.  As a teenage boy growing up in Long Island, New York he jotted down the things he hoped to accomplish in the years to come.  He wanted to play basketball in high school and college, become an assistant coach then obtain a head coaching position, win a big game in Madison Square Garden, and finally cut down the nets after winning a National Championship.  He did not just wish and pray these things would come true but he worked hard everyday to make his dreams become a reality.  He carried his list on a note card to serve as a tangible reminder of where he was headed. 

In 1983, my Dad lead his underdog North Carolina State Wolfpack to the NCAA title game and was able to cut down the nets.  My Mom took my sister and I out to the concessions because she could not stand to watch the last seconds of a close game.  We never actually saw my Dad running around the court like a crazy person, but we relive that magical moment whenever we see replays of the game.  People still come up to me today and tell me where they were when Lorenzo Charles dunked in that last second shot.  At the age of 36, my father could take out his notecard and check off every single one of those goals...been there done that.  In my 38 years of living I have filled thousands of notecards with my musings but very few have ever come to pass.  Jim Valvano certainly serves as an example of the what can happen in our lives when we combine a personal vision with determination and passion. 

As a young girl, my Dad was my hero and I had no idea that in such a short amount of time my Superman would meet his kryptonite.

Cutting down the nets!!!

A SYMBOL OF HOPE

October is National Breast Cancer Awareness Month.  Anyone that has been touched by this disease does not need a reminder to remember. When hard times come into our lives it is only human to want it over and done with quickly.  When faced with pain, I find myself running as fast as I can trying to leave the nightmares behind.  What if the only way to learn the lessons that life is meant to teach us is to slow down and listen? I don't want to have to face the same test over and over never gaining anything from the hardship.  So I have decided this month to take some time to become "aware" of how cancer has changed me. 

Growing up there were distant relatives that had been diagnosed with cancer, but it was not something that was discussed.  I never feared the disease or imagined it would play such a significant role in my world.  In the summer of 1992, my father was diagnosed with cancer and given a year to live.  He was young, vibrant, and lived with such passion.  I left college and spent the last 10 months of his life soaking up his magic.  I promise to share more of his journey in the days ahead.  You will be inspired by his divine legacy.  I returned to college, graduated, married, worked for a few years, gave birth to two beautiful boys, and then came the lump that would change everything.  In 2005, at the age of 33, I was diagnosed with breast cancer.  Because of my family history genetic testing was performed and it was discovered I had inherited a mutation from my father known as BRAC II.  Both my sisters were tested and thank goodness neither of them had the mutation.  Because of the risk I carried my doctors suggested an aggressive approach to treating my cancer.  I had my last and what I hope will be my final surgery in December of 2009.  Although I pray that my treatment is behind me, the healing continues. 

Since my diagnosis October has been a hard month for me.  I am so thankful that people are working hard to raise money for breast cancer research, but seeing that ribbon everywhere makes it hard for me to escape my reality.  I have left many stores wanting to scream so that someone would acknowledge my despair.  Doctors tell you that you become a survivor the minute you are diagnosed with a particular disease.  I have to be honest in admitting that I never embraced that sentiment.  I have been pissed off, ashamed, hopeless, lost, afraid...you name it I have felt it.  Because I welcomed destructive emotions and made them feel at home in my soul it has been hard to get rid of those horrid guests.  And so when I turned the page of my calender and discovered October was here again I braced myself  for the despair.  Something has changed inside of me because when I spotted that dreadful ribbon the other day I felt an unfamiliar stirring and struggled to name it.  Was it, could it be, no way, it is....HOPE.  Letting go of the anguish has allowed me to embrace a new way of viewing this beautiful symbol.  Not only during the month of October, but for the rest of my life I will stand firm beside the millions of people that have been forever changed by our common foe.