Wednesday, September 14, 2011


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Friday, September 9, 2011

Trying to catch up.

So, obviously I've been really bad about keeping the blog updated.  Summer was a whirlwind.  I can't believe it's over.  Well, the weather isn't.  The summer weather is just getting started here in, we should have at least three more "hot" days before going back to our typical mild and rainy weather.

Medically things are more or less the same.  Still missing a couple feet of small and large intestine, a gallbladder, uterus, ovaries, cervix etc...still finished with chemo (hooray).  I've been working on getting my annual colonoscopy done since may...(don't EVEN get me started) and it's FINALLY happening on the 20th.  *eye roll*  Colonoscopy, endoscopy and capsule swallow study.  The authorization process was finally "expedited" by an incisional hernia that needs repair, but my surgeon doesn't want to do that until we know I don't have anything growing in my colon again...yet.  So, we're doing testing, then hernia repair.  While I wait for testing and another (this is number three for the past year) abdominal surgery, I have my very first case of shingles.  I have heard stories over the years about how miserable they are, and yep they're all true.  Nerve pain is not my friend.  If I've learned anything over the past year, that's it.  Nerve pain ROTS.  Thank God for decent pain meds.

So, if you caught the abdominal surgery reference, in the last paragraph, and you're wondering why on earth a hernia repair wouldn't just be laparascopic...well, it's because I'm a freak of nature.  Basically, it's a huge hernia (apparently they really meant that I should follow all those post op rules about lifting stuff etc) and as long as y surgeon has a arson to go in there and take a peek, he's going to take it.  The small intestine is like a huge blind spot in the human anatomy.  There really aren't any great ways to see inside it, and despite it's name it is quite big.  The fact that I've had advanced cancer there is going to make any doctor uneasy, because there's not a great standard of care when it comes to surveillance, and small intestine cancer is quite deadly.  So, we're taking the hands on approach and cutting my guts open any time we have a reason to.  Yay me.  Abdominal surgery is super painless and really easy to heal from, and also makes for a great set of abs...NOT.  Yeah, I'd like to think that would have sounded funnier out loud, but let's face it.  It totally would have flopped with that delivery as well.  Oh well.

So...other than the misery of shingles and a colonoscopy, endoscopy, and another surgery on the horizon things have been pretty quiet.  *snort*  Port flushes every month and so on.  Pretty boring stuff.

The mister just had his one year spinal surgery follow up.  His films looked great and he's been cleared for full activity.  YAY!  While his back will never be the same, it's about as good as it's gonna get.  So, there's that.

The boys just started the new school year.  I'll try and get that post and pics up on the family blog soon...ish.

ALWAYS HOPE: The Eugene, Oregon RFL Speech.

We all have stories.  The story of how we came to be here.  Here at Relay For Life.  Here, at this point in our lives.  Here, to support others in a similar place.  Here, to work toward a cure.  Here, to share our hope.  Maybe you are, or have, personally fought cancer.  Maybe you’re a spouse, sibling, caregiver, friend or parent of a cancer warrior. Maybe you’re grieving and remembering a loved one who fought.  I’m no different.  There’s a story that leads me here, to this place.  I’m here today to share that story with you.  My goal is that you will take something positive away from it, that you will be encouraged and have a renewed sense of hope.

My story isn’t just my own.  Like so many of us, my story involves many other people.  My family, friends, nurses and doctors have all been such a big part of my journey.  Many in my family have their own cancer journeys, so my personal medical struggles aren’t the beginning of my cancer story.  I was in high school when I found out my biological father had cancer.  I wasn’t raised by him and had no memory of him.  I really didn’t understand why this was a significant piece of information for my parents and I to have.  I was quite emotional about it, though.  I had no idea why or what I was even feeling.  It’s just as likely that it was a teenage hormonal response, as it is that I was genuinely responding to the issue at hand.  Contrary to my belief at the time, I survived.  My life went on, just as it had before.  I graduated from high school, went to college, a few times, actually (just for good measure), got jobs, worked, found love, married a Coastie, saw ships off, waited for ships to come home, had babies and hoped for the day my military man would retire and rejoin the civilian world. 

 My husband, Brandon, and I had our first baby in September of 2000, a sweet baby girl.  She was very beautiful and rarely unhappy.  We named her Hadley and loved her more than we could ever express.  In fact, we were so in love with her, and being parents, that we had another baby in January of 2002.  Just 16 months younger than his sister, Keegan was born trying to accomplish every skill she had mastered.  He always seemed to be older than he was.  He loved animals, dinosaurs and his family.  In November of 2003 we welcomed Liam, or as we so often called him, Baby Liam.  He was a sweet little guy.  Easy going, happy, and the cutest little orangutan baby you’ve ever seen.  Our home was busy, rarely quiet, rarely without toys on the floor or a diaper that needed changing, but we were happy and full of love for these three little people we’d been blessed with.  This is where the easy part of my story ends. 

In April of 2004 our Hadley Bug, now three and a half, was diagnosed with a very large brain tumor.  It was traumatic and shocking and the scariest thing we’d ever faced.  We had a three year old in ICU, a two year old, and a five month old.  I’ll tell you one thing.  The thought that something like this could happen NEVER crosses your mind when you are making the choice to have three children in 36 months.  Not. ONCE.  It did happen, though.  So, we did what we had to do.  We fought like we’d never fought before.  We met with doctors, set up surgeries, started meds, endured therapy…you know the routine.  Hadley’s care, like all cancer patients, was choreographed to the second.  In six months time our 3 year old spent approximately 26 hours in the operating room alone.  You all know how time consuming the rest of treatment is.  Our lives were definitely in a state of organized chaos.    It seemed as though every system in her little body was affected, anything that wasn’t was watched closely, just in case.  Each system and body function comes with it’s very own medical specialist.  Amidst all this chaos, we started to learn to balance worry, survival and panic with making memories, enjoying life, and hoping…just in case that worst-case scenario became our reality. 

In 2005 my biological father re-entered my life.  It’s a short story.  I was able to meet him.  He was in the hospital.  The doctors had told him he wouldn’t be going home this time.  He’d been battling for his life for 12 years.  Our visit was very short.  He was medicated and declining.  That evening he slipped into a coma.  A few days later, he died.  It was the first time I’d watched anyone die.  I spent a lot of time hoping that nobody else I knew or loved would face that same fate, especially my Hadley bug.   

In 2008, four years, countless MRIs, physician visits, ER time, hospitalizations, 2 neurosurgeries, 5 central lines, PT, OT, special education, and 6 chemo failures after my sweet Hadley was diagnosed with a brain tumor…her team of doctors, my husband, and I decided to end treatment.  In reality, though, it wasn’t much of a decision.  We were out of options.  Our Hadley Bug was dying.  The worst-case scenario had, in fact, become our reality.  In September of 2008 Hadley entered hospice care, had a wish granted by Make-A-Wish, and turned 8.   On December 12th, 2008 she died.  I wish it were as simple as I’ve just made it.  Of course, it’s not.  It never is.  It is ridiculously hard and messy.  Brandon, the boys and I, along with our entire family, our friends and community are still grieving.  Hadley’s larger than life personality, amazing joy and pure love of people left a huge absence in our hearts and lives.   I hope that her memory will be kept alive, that nobody will ever forget how amazing she was…and that her memory will help others.     

Hadley had been gone almost exactly a year when I had surgery to repair a torn meniscus.  That year was a hard one.  I felt like crud for most of it, but my doctors and I assumed it was depression, grief, lack of sleep, poor nutrition…all typical issues in the early days of grief.  My knee surgery was the beginning of a long string of health issues that were clearly separate from my grief, though.   In July 2010, a large mass was found in my transverse colon.  In laparoscopic surgery, a few weeks later, an issue with the dye used to mark the surgical area lead to the discovery of an extremely rare, and fairly advanced, small intestine cancer.  I came out of general anesthesia expecting a few tiny incisions to find 25 staples in my abdomen.  I knew this couldn’t be good.  Fortunately, the diseased sections of my small and large intestine were removed entirely.  Unfortunately, the cancer had already spread to most of the surrounding lymph nodes.  I started chemotherapy a month later.  This time the process wasn’t so foreign and was much less of a shock.  Also on our side was the fact that our boys were now almost 7 and 9, rather than an infant and a two year old.  Long story short, I really didn’t enjoy most of that experience, but really hoped that it would all be worth it, in the end. 

A meeting with a genetic oncologist helped answer my question of “why”.  A genetic defect my doctors presume came from my father, was to blame for at least 8 cancer cases in our family, including mine, and quite likely Hadley’s as well.  I have an MSH2 deletion, which falls under the Lynch Syndrome Diagnosis.  While it was calming to have some of the randomness removed from my story, it was heartbreaking to realize that my faulty DNA was responsible for the suffering and death of my baby.  Worse yet is the reality that my two sons each have an independent 50% chance of inheriting that same faulty DNA.  We are currently in the process of having them tested.  We hope, obviously, that they have my husband’s reliable DNA instead of my wacky DNA.      

With FOLFOX6 behind me, and a bleak survival rate ahead of me, I stand here, wondering what on earth I could possibly say to encourage and empower all of you.  To be quite honest I was very intimidated at the thought of speaking to a group of such amazing people.  A group of warriors, and those who love them, certainly don’t need to hear anything from me, I mean, you folks are amazing.  We hear it all the time, don’t we?  Almost as if it’s a justification for or reasoning behind why we were specifically chosen to fight this fight.  Then, it hit me.  The one thing I struggle to communicate to people around me:  I am just like every other human.  I am just a person.  None of us were prepared for this.  We have the same every day issues most people do.  Our kids get colds and flu bugs, our spouses have to work and sometimes travel, no matter how much we need them and, at least in my case, the dog likes to eat at least 3 pair of shoes a week.  We have all of this AND cancer.  An extraordinary burden placed on ordinary people and their loved ones.  We feel broken and defeated and scared too.  So, what sets us apart?  What gets us through?  How, do we face death, and almost scarier than death, life with cancer? 

Hope was one of Hadley’s favorite words.  It was one of the first words she could spell from memory.  She had a shirt from St Jude that she loved to wear.  When she would tell people about it she would say “Hope period.  H-O-P-E period!”.  My sweet bug had it right.  Hope is what gets us through.  Not just hoping during the good times…but hope period.  ALWAYS hoping for something. 

We all have hope.  Our hopes are different from person to person, and from season to season.  There are times in our stories that we hope the testing rules out cancer instead of diagnosing it.  Then we might hope that we are strong enough to get out of bed in the morning.  Maybe we hope for a port to flush properly, or for our kids not to see us sick, again.  We all hope treatment is successful, and the cancer won’t return.  Some of us have hoped that we, or a loved one, would have a painless and peaceful death.  Whatever your hope, you do have at least one.  Identify it.  Work toward it.  Keep working toward it.  If a time comes when your hopes change, that’s ok, change your course and keep on moving.  Nobody ever made a rule that your hopes can never change.  You do not fail when you change what you hope for.  Whatever your circumstance, find something to hope for and make that the focus of your life.      

At the end of Hadley’s life she told almost everyone she was going to heaven.  She knew exactly what heaven would be like.  I had worried, early on, that I wouldn’t be able to answer her questions about the afterlife.  She had so much hope that what she hoped for became her reality.  In her mind a Coast Guard helicopter would come and take her to heaven.  There would be a 24 hour McDonald’s, lots of babies to hold, play with and rock. She would ride everywhere in a school bus, swim as much as she wanted and she would be a teenager and best friends with Miley Cyrus.  Her hope for these things gave her peace.  She was completely unafraid because she was so hopeful.  She smiled, her crooked little smile right up until she stepped in to her helicopter.
Right now, I hope for a cure.  In my mind it’s what WILL be.  I know my hopes may change eventually.  That’s ok.  For now, I hope I’m cured and I hope I remain that way.  I hope to see my boys graduate, get married and fall in love with their babies.  I hope to enjoy retirement with my husband and grow old with him.   I hope that this is just part of our story.  I hope that we carry the lessons we’re learning with us to enrich the other seasons of our lives.

Things never go so well that one should have no fear, and never so ill that one should have no hope.  ~Turkish Proverb~

In other words have just enough fear to remain grounded, appreciative and to live as though you’re surrounded by miracles…and ALWAYS have hope.  Things are never, ever

A Birthday Gift...

World Vision Donations: Gift Catalog

This year we 'adopted' an 11 year old girl from Kenya for Hadley's 11th birthday. Her name is Moraa and her parents struggle to provide food and other basic necessities. Hadley loved people and would definitely like the idea of giving HOPE to children in a very tangible way and I can't bear the thought of a child dying needlessly. So, in honor of Hadley, we are making a very small change in the world, but a big change in Moraa's world.

If you (mostly family) would like to honor Hadley for her birthday I encourage you to check out this page. You don't have to sponsor a child monthly to give. There are options for one time donations too. For example, you can provide 2 living chickens for a one time $25 donation, or $385 worth of lifesaving medicines for a one time $35 donation!!!

Happy Birthday Hadley Bug. We miss you, love you, and hope you are proud of the HOPE we are trying to keep alive for you! ♥

If you do decide to make a gift, please share here so we can see the great things happening in memory of our girl! ♥