Easter Sunday

Today is not an anniversary in the traditional sense but not a whole lot about the last year and a half has been traditional.  My one year anniversary of my stem cell transplant was on April 6th but last year April 4th was Easter Sunday.  Two days before I was scheduled for transplant I was helping my daughter pick out the "perfect" Easter bow to wear to church with Daddy.  Two days before my transplant Daddy went off to church wearing dress pants, a blue and purple checked shirt and a pink striped tie while Daughter wore a pink seersucker dress, party shoes, and a yellow bow in her hair.  I may or may not have gotten out of my pjs that day and my bald head required a hat on and off all day.  To be totally honest I only remember what my family was wearing because my favorite picture of my husband and daughter was taken on that day. 

While they went to an Easter service at an unknown church in Bethesda, Maryland, I lay on the couch of our rented home trying desperately not to throw up as everything made me sick and cancer ravaged at parts of my body.  (The transplant preparatory chemo was the only chemo that ever made me nauseous).  When they returned from church we had an Easter egg hunt in the back yard that was followed by approximately 30 minutes of "searching" and yelling for the Easter bunny to come back and visit.  Not only did I smile that day but I laughed.  Laughter that made my body shake, laughter that made me remember to never stop fighting for my life.  I have too much to live and laugh for.

Today, one Easter later, I was able to attend the Easter service with my family.  This morning I woke up and not only picked out the perfect bow I also was able to pick out the perfect outfit.  This morning I was able to pick out my own outfit...in fact I was able to go threw more than one outfit (after the first one didn't look right).  This morning I was able to eat pancakes and drink orange juice without fear of my stomach rejecting either.  This morning I had to use a hair dryer to be sure that my hair was in the right place.  On this Easter morning I was able to be a part, a real part, of the everyday life of my family.  On this Easter I enjoyed the day with the knowledge that this past Thursday my PET scan continued to show no signs of cancer activity in my body.  Today I am alive and laughing and loving.

Happy Easter.

XOXO

Feelings from a husband watching cancer

Just before my 1st "Re-Birthday" I asked my husband to write a guest post for my blog.  The following is just that and although I've now read it a dozen times it still causes me to tear up.  Thank you Adam for your honesty and beautiful words.

We’ll Lose Count
365+, a.k.a. happy 1 year re-birthday to my wife. Such an important number, yet such an arbitrary number.

It has been 19 months of endless numbers. Success rates of non-Hodgkins lymphoma. Number of rounds of chemotherapy prior to the next step. Amount of money at which health insurance reimbursement is capped. Number of coughs each minute, each hour, each day. Number of bottles of Gatorade to be bought at the supermarket. Size of the Christmas tree to be purchased and put on the porch next to the bedroom for Christmas day celebrations. Size of the tumor. Number of meatloaves and lasagnas delivered to the house. Number of failed chemotherapy treatments. Months until my daughter’s 3rd birthday. Months my wife had left to live. Number of turnpike exits in New Jersey. Unrecognized phone numbers of those calling to express support. Cost of rent. Amount of money raised for research and support of those with blood  cancers. Number of people participating in a prayer vigil at time of transplant. Number of new cells turned lose to battle cancer. My wife’s weight. Score of the Phillies/Nationals game on a warm spring day. Minutes of travel time from Jane’s house to the National Institute of Health. Chimerism numbers. Yardage of the 8th hole at Sligo Creek, my personal sanctuary. Flight number of each “commuter” flight to Boston. Number of laps on and floors visited during romantic walks around NIH. Number of visits and posts of support on CaringBridge. Size of the community of cancer-warriors. Season number of West Wing that was currently in the DVD player. Number of days my wife went without food. Number of pandas sun bathing at the National Zoo. Number of doctors that make up my wife’s medical team. Number of pre-school teachers that my 3.5 year old daughter has had. Number of pills my wife takes each day. Number of friends and family battling every stage that is the nastiness of cancer. Number of visits to the emergency room and hospital for an “other-wise healthy” woman in her thirties. Number of blessings I’ve been granted each and every day.

A seemingly endless, sometimes senseless, and almost always relentless barrage of numbers. They all have meant so much, but they have also shown themselves to simply not be helpful enough. When faced with yet another number relating the percent chance of my wife’s survival late during the winter of 2010, a friend reflected that regardless of the number given by doctors there was only one side of the equation in which to fight towards. In the hurricane of numbers, one thing is clear... push forward bravely, passionately, and lovingly.

A balance between urgency and appreciating “the moment” is near impossible to strike. During the quest to survive, they are too often one in the same. The numbers have meaning, but must not drive my existence.

A few things I know about numbers:

• The measures and metrics of real science saves lives. Faith is what holds us all together throughout the non-linear process of living, dying, and everything in between.
• Percentages both give and steal hope. I refuse to believe them. Our number of days on this earth are unclear. Some days there will be a bounty of experiences left ahead. Others we will take time to smell the flowers as if it may be our last opportunity. I believe things are beatable despite having seen evidence to the contrary. Each of us are miracles each day… to ourselves and too others.
• There is always more money and more support needed to be given to battle diseases such as lymphoma that try to crush spirits, families, and lives.
• We all can use a person, or two, or two thousand sending prayers our way.

I now live with a rather dichotomous perspective. I have the comfort and patience in knowing that most day to day things are quite trivial in the grand scheme of things. At the same time, people really piss me off when they complain, question, and pout without showing a modicum of perspective. I cannot get enough of my wife’s smile, my daughter’s giggle, my family’s warm embrace, and quiet time with friends. Yet I still rush, rumble, and bumble to protect the fragile life that means so much to me. I dive each day towards the community of cancer even though I know it would be nice to run away from it real fast.

Sometimes living is like walking across an endless black abyss on a rickety wooden bridge. No set of numbers will fully engineer this bridge to bring it fully up to code. I’ll try to hold on just tight enough to not lose my grip and just loose enough to not smother the light that flows in life each day.

365+, someday we’ll lose count.

Thoughts on being a Stem Cell Donor

The following piece was written, by my sister Amanda, yesterday as I turned +365 days.  Amanda was my stem cell donor and thankfully for me her immune system has settled nicely into my body and kicked the crap out of my cancer.  Thank you Amanda.

Pep Talk 365 Days Post transplant.

Dear Cells,

365 days ago I hoped that you would be enough. 365 days ago I prayed you would perform heroically. 365 days ago I asked that you would work above and beyond my normal expectations.  I put my faith, and hope and courage in you.  365 days ago you had poor odds for success and yet I prayed that you would fight hard and be unforgiving and succeed. 

365 days later you have beat the odds. 365 days later you have fought. 365 days later you have been unforgiving.  You have done everything I asked of you and more. You have fulfilled my faith, my hopes and refueled my courage. Thank you for what you have done, and what you have given me and my sisters. Thank you for keeping up the fight and being unforgiving. Thank you for being enough. 365 days later I know if faced against the odds I will have faith, I will have hope and I will have courage.  

~Amanda

+365 Days

One year ago today I received the stem cell transplant that saved my life.  Today is my first birthday, so to speak.  In a little more than a month I will have my 32nd birthday but today is truly special. I thought it would be interesting to look back at the blog post I wrote on April 6th of last year (caringbridge.org/visit/elizabethnaylor).  I've come a long way folks! 

On this day one year ago I was excited that I was able to get from the 3rd floor to the 7th floor library at NIH.  Today, I woke up, went out to a "birthday" breakfast with my husband and daughter, did the drop off at preschool, spent 30 minutes on the treadmill, took an hour long yoga class, picked up lunch, when to therapy, and that brings me to 1:00pm.  Take a look at last year's post...today is a great day!

"Tuesday, April 6, 2010 4:12 PM, EDT

Good afternoon Friends and Family,

I am sitting here in my lovely hospital room (spacious yet bland) waiting for my nurse to tell me its time to transplant.  Seemed like a good time to post.  Amanda was in all morning donating loads of wonderful stem cells and once they've been tested (for what I don't know) and counted they'll bring them to me on the third floor.  They then get hooked to my IV and we let gravity do the rest!  I just went to the library to get the latest people magazine so that I can catch up on the Sandra Bullock story while I become a bit more of my sister!  We learned the other day that there is a window of time here that I could go on a crime spree and any DNA evidence would send the police to Amanda Hamblin Joyce.  Apparently, for a little while I will appear genetically to be my sister.  Crazy!

So, for now I sit, well periodically I get up and check out my scalp in the mirror.  I've had some hair growth in the last week and think my dome is starting to resemble a very, very pale peach, with all of its glorious fuzz.  I kind of love it.

The last thing that I wanted to write about today was to make sure that everyone understood that I am not being isolated in a bubble for 100 days.  In fact, they hope to discharge me from the hospital in about 2 weeks.  And while I'm in the hospital I am allowed healthy visitors and I can even leave my room...a little while ago I went all the way to the 7th floor (my room is on the 3rd floor) to pick up the previously mentioned people magazine!  This transplant is serious business but it is also very different from transplants that many of us have heard about.

Love to all.  Keep the messages coming they always make us smile".

A Letter to my Husband

Dear Adam,

Happy Anniversary!  I imagine that when we said our vows eight years ago it never occurred to either of us that "in sickness and in health" might come so soon.  But it did and we made it and continue to make it each and every day.  Each time a doctor has tried to reassure us with the phrase "otherwise healthy" I have thought two things, 1)otherwise healthy my a$$, cancer makes me not healthy. and 2)Thank God I have Adam in my life to be the otherwise healthy that I so needed.

We were dealt a really crappy hand but I think we figured out how to play that hand one card at a time and as a result we get to stay in the game, together.  I can't promise there won't be other bad hands but I can promise that we will do all that we can  to play the hand and stay in the game.  Eventually even bad card players get a few good hands.  We've had some really good and some really bad...no need to head to Vegas right away but perhaps an afternoon playing the slots at Mohegan sun!

On this, our 8th anniversary, I thank you and I love you.

Love,
Elizabeth