Happy Crapiversary

Its raining today.  The kind of rain that makes you want to climb back into bed to watch old reruns and your favorite movies.  I almost did just that when I got home from the bus stop drop off but remembered the date and thought better of the movie and bed plan. Today is not the day for me to head back to bed.  Today is a day to feel alive and growing. Today is October 16, 2014, it has been exactly five years since my very first oncologist had to say the words, "You have cancer."  Five years. Hard to imagine.  Five years ago the floor dropped out from under me and my life changed, never to return to what it once was.  

I have often said that I am not grateful for having had cancer.  I still stand by that.  I tend to be grateful for things that aren't trying to kill me.  Chocolate, iced tea, my family, my friends, the ocean, the list goes on and on.  You will never, however, find cancer on that list.  That being said, I like who I am today.  I like the person I have become and the person I am becoming.  Some of the changes and growth that I have experienced come from having fought for my life.  I'd like to believe that most of the growth would have occurred anyway...just perhaps on a slower scale.

So, Happy Crapiversary to me!  Here's to many more Crapiversaries....kind of like a birthday, but not.

Strength

Where to begin...

It is a beautiful Tuesday afternoon and I am sitting here trying to find the right words.  Yesterday, an article about me appeared on the Ladies Home Journal website, and today it can be found in the magazine on store shelves.  This was not a surprise.  I was an integral part in the writing and producing of this particular story and new what days to look for it in print.  I know the story inside and out and understood that it would become public in  a way that I haven't experienced before.  What I didn't know was that it would make me weak in the knees to see and read. 

I have lived the diagnosis.  I have lived the chemotherapy.  I have lived the transplant.  Above all I have lived the fear and the joy.  But to see it in print....is a whole other ballgame!  As I read the story yesterday I found myself repeating over and over "oh, shit" as I was reminded of the horror.  I looked at the pictures that accompany the article to be sure that it was really me.   I read and reread and reread.  And then I cried. 

I cried because I remember it all.  I cried because there are parts that I want to forget.  I cried because I wish it never happened.  I cried because other people are going through it today.  I cried because the whole darn thing is amazing and wonderful and totally overwhelming.  But most of all I cried because I am here to cry.  I am here to share my story in hopes of helping just one other person as they travel through their own fear and their own story.

The Audience

I am home after a whirlwind trip to Las Vegas .  I was in Vegas less than 48 hours.  It may have been short but this trip has been wonderful.  The food in Vegas was been amazing, from breakfast at Thomas Keller's Bouchon (twice) to the duck breast at Emeril Lagasse's Table 10.  Not to mention the wine and bellinis!  I was able to see a Cirque show on Wednesday night after an enormous waffle cone full of Ben & Jerrys.  My suite came complete with 3 televisions and a phone in the bathroom,.  The king size bed was soft yet firm and loaded with perfect pillows.  The people working at the Venetian were kind and helpful including the blackjack dealer who helped explain the rules and strategy while very kindly (and happily) taking my money!  (Not to worry, I was only willing to gamble $50...Grace will still get to go to college!).  For all of the great touristy reasons the trip was excellent!

And then there was the real reason I made the trip.  On Wednesday morning I shared my cancer story with around 200 people who work for Genentech.  What an audience!  They listened closely, asked questions, and thanked me.  Thanked me again and again and again.  I have had numerous opportunities to share my story with patients, caregivers, and survivors but this was the first time I have spoken to people who work in the field of cancer but rarely get to meet those of us in the thick of it.  At the risk of sounding like I'm sucking up to the company, it is important to me to say thank you to them.  They reminded me that sharing my cancer story is so much bigger than me.  So, Thank you.

Surrounded by cancer...by choice

For a little over a year I have worked in a pediatric hematology oncology clinic, supporting the parents of children in treatment.  Almost on a weekly basis someone finds out what I do for work and just after the obligatory horrified look, they ask "How in the world can you work there?".  I tend to hear this question and smile humbly (I hope I look humble), and then try to deduce the meaning behind the question.  Typically, if I'm speaking with someone who knows of my own history with cancer, they are genuinely curious about why I would choose to stay surrounded by cancer.  Those poor individuals who do not know my history honestly seem to feel sorry for my choice of work.  They are thrilled that someone is willing to work with pediatric cancer and the families affected by it, but they "know" that person could never be them. 

So, after being asked, once again, this past Thursday about how I could possibly choose to stay in the cancer world, I spent some time thinking about it.  (This is not a new topic for my poor little brain and is often a topic that seems to come up when I'm trying to sleep!).  Why do I surround myself with cancer? Would it be "healthier" to go back to teaching or perhaps a whole new profession? Is it even a choice for me to work in cancer?

Here are the answers that I've thought of most recently:

I surround myself with cancer because it feels right. 
I surround myself with cancer because when you have cancer you meet other people with cancer. 
I surround myself with cancer because I would be surrounded by it even if I buried my head in the sand.
I surround myself with cancer because my story provides hope to other patients and their families.
I surround myself with cancer because I know what fear does to a person and perhaps I can help someone else breath through that fear.
I surround myself with cancer because tomorrow is not promised but today I can't provide a shoulder to cry on, a cup of hot coffee, or a joke to ease the tension.
I surround myself with cancer because I can.


A sincere thank you to the patients and families that have allowed me into their lives during the most difficult of times.

1 doctor, 2 doctors, 3 doctors, 4.....

I'm sitting in the waiting room of a doctor's office for an appointment with a new doctor.  These days I do my best to avoid adding new doctor's to my contact list but sometimes it is unavoidable.  Fortunately, this visit is a simple primary care physician change.  It was time to try a new office, an office with a doctor and staff that have a great deal of experience caring for cancer survivors.  On my way here, while sitting in traffic, I was trying to count the number of physician phone numbers are programed into my phone...not to worry, I wasn't actually looking at the phone, but instead trying to think of all the names from memory.  This exercise proved to be more difficult than I imagined.  First of all, my memory stinks.  Between age and residual chemo brain, I'm often lucky if I can remember what I ate for breakfast.  Second of all, the list seems to go on and on and on...

There is a primary care physician, an ob-gyn, my dentist, a thoracic surgeon, more than one research nurse, multiple oncologists, primary nurses pharmacists, a transplant coordinator, and who knows how many others that I met in the medical field throughout my cancer nightmare whom I now consider friends and keep in touch with.  And on and on and on....

Fortunately, I have been blessed with world class medical care and as a result I'm still here to complain about the number of doctors with phone numbers in my contact list.  Anyway, here I am waiting to meet yet another doctor.  Keep your fingers crossed that this is another one to put permanently in the list.  We can all use good people looking out for us, even if it isn't always easy to remember all of there names.

The liars and cheats...and the Heroes.

Its official, Lance Armstrong is a cheat and a liar.  His recent interview with Oprah wasn't particularly surprising, if you have been following the story at all over the past several years.  Yet, while not surprising I still find it incredibly disappointing.

I don't really care about the impact of the cycling world, they'll recover.  Or about the fact that Lance was rude and mean to his accusers, they'll recover too.  What I care about is that I spent time looking up to Mr. Armstrong as a cancer survivor.  I held him up to a higher standard because he had done something as incredible as beating cancer and then gone on to impress people.  I looked up to him for the things he has accomplished in the cancer community and the countless lives that have been touched by a simple yellow bracelet (A livestrong story).  For ages I held on to the belief that no cancer survivor would mess with their new, healthier body with steroids or blood doping.

Today, I feel angry.  Angry at having been duped.  Angry that all cancer survivors aren't saints.  Angry that Lance Armstrong, the liar and the cheat, can easily get a stage with Oprah Winfrey.  I am angry that Lance can no longer be the good guy who changed cancer.  He will always be tainted.

I may be angry but the angrier I begin to feel the more I slow myself down and remember the good.  I remember the heroes....not the lying and cheating heroes but the real heroes. 

The daughter who loves me even though I was "so silly to let the hair stylist shave my head".

The husband who loves me bald and hairy, cancer-ful and cancer-free.

The family who keeps me grounded. (You must always have someone in your life to remind you of what a dork you were in middle school)

The doctors who saved my life even when they were unsure if that was a possibility.

The dear friend who turned her home over to complete strangers so that we could be settled while in Maryland.

The nurses who took care of me each step of the way.

The fellow cancer survivors who were also fighting a fierce uphill climb.

This list goes on and on and on....

Today, and everyday, when you are faced with the onslaught of liars and cheats, step back and remember the heroes.  As Mr. Rodgers so eloquently put it "Look for the helpers. You will always find people who are helping." To this day, especially in times of "disaster," I remember my mother's words and I am always comforted by realizing that there are still so many helpers – so many caring people in this world."

Happy Days

Happy New Year all!

Yesterday, December 31, 2012 marked +1000 days post stem cell transplant.  +1000!  Typically, I pay attention to the years (in April I will be 3 years old) but 1000 days sounds pretty awesome!  Beginning on transplant day (day 0) it is easy to count the days, +1, +2, +3...+10...+15...+25...+50...+100...and so on.  Those first 100 days are usually when any "excitement" happens.  Side effects like GVHD, mouth sores, weight loss, etc. often rear their ugly heads in the beginning.  As you pass +100 days and begin to feel human again, begin to fell slightly less fearful of every ache or pain, it becomes harder to count each day.  You just forget.  Periodically, you might count back on a calendar and recognize +200 days or +333 days, whatever numbers seem worthy of recognition.  Truthfully, they are all worthy of recognition.  Ask any transplant survivor and he or she will likely tell you that every day is a gift and worth celebrating. 

So, last night while trying to stay awake to ring in the new year I pulled up a special calculator on the web.  Using this particular calculator allows you to input any two dates and figure out how many days, months, weeks, seconds, have passed between them.  Easy enough.  I put in April 6, 2010 and December 31, 2012 and what do you know +1000 days!  Amazing!

As you begin this new year remember that each day is a gift and every milestone is worth celebrating!  You can even choose your milestones!