I am thankful for...

During the weeks leading up to Thanksgiving I took on the Facebook challenge of posting something I was thankful for, for each day.  I enjoyed the exercise quite a bit and have compiled the list for you to see in its entirety.  What are you thankful for today?

Nov. 2, 2011 I am thankful for hot cider on cold fall mornings!

Nov. 3, 2011 Today I am thankful for my 4 year old's vocabulary, "Mommy, when we go to DisneyLand can we see the ruthless henchmen?".

Nov. 4, 2011 Today I am thankful for the wonders of transplant. (And maybe a little time to my self).

Nov. 5, 2011 Today I am thankful for Team in Training friends (here's looking at you Jennifer Bolitho).

Nov. 6, 2011 Today I am thankful that I can't think of any "cancerversary" that falls on November 6. Just a normal day for a normal lady.

Nov. 7, 2011 Today I am thankful that my kiddo seems ignorant of the time change and is getting a little extra, much needed, kiddo sleep.

Nov. 8, 2011 Today I am thankful that it is an off week for bloodwork.

Nov. 9, 2011 Today I am thankful or the things that are crossed off the "to-do" list. Done.

Nov. 10, 2011 Today I am thankful to be alive. Some days I am struck by that fact.

Nov. 11, 2011 Today I am thankful for the pair of jeans that have been in storage for 16 months. Still a smidge big but sooooo comfortable.

Nov. 12, 2011 Because I am a moron and posted yesterday before remembering it was veteran's day...Today I am thankful for all of the men and women, past, present and future who serve in the military.

Nov. 13, 2011 Today I am thankful for beautiful fall weather and a kiddo who also loves to enjoy it!

Nov. 14, 2011 Today I am thankful for an understanding and loving husband. (don't tell him though, I wouldn't want it to go to his head).

Nov. 15, 2011 Today I am thankful that I have the opportunity/chance/responsibility to make another person's life a little easier.

Nov. 16, 2011 Today I am thankful that I am not one of "those" people.

Nov. 17, 2011 Today I am thankful (and honestly amazed) that I did not spontaneously combust at hot yoga this morning.

Nov. 18, 2011 Today I am thankful to have arrived safely in California. Woohoo for vacation!

Nov. 19, 2011 Today I am thankful for a kiddo who slept "late" even with the 3 hour time difference!

Nov. 20, 2011 Today I am thankful for warm weather and sunny skies (neither of which we are experiencing right now).

Nov. 21, 2011 Today I am thankful that neither my daughter nor niece fell into the La Brea tar pits.

Nov. 22, 2011 Today I am thankful for Southern California weather.

Nov. 23, 2011 Today I am thankful for the happiest place on earth. (I hope we see some princesses)!





Nov. 24, 2011 Today I am especially thankful for my health, my Grace, my Adam, my family, and my friends. Love to all on a wonderful Thanksgiving.

Team Elizabeth Walk/Run

Today's 2nd Annual TE Walk/Run was a great success!  Thank you to all who made it possible.  

For race results visit:  RaceMenu.com/Results

More info to follow as we tally up numbers and figure out how much money will be going to Be The Match!!!

Team Elizabeth Event 2011

Hello Readers,

I am reaching out to you to once again announce the upcoming Team Elizabeth Walk/Run!  The event (our 2nd) will take place on Saturday, October 22, 2011 at 9am in Hull, Massachusetts and benefit The Marrow Donor Registry. 

Following the Walk/Run we will be hosting an after party at Daddy's Beach Club in Hull.  There you can enjoy free pizza and even have the opportunity to sign up to be on the National Marrow Donor Registry.

This email is to let you know the many ways that you can be involved and support this cause. 

1. Register at http://www.racemenu.com/teamelizabeth

for either the 2 mile walk or 4 mile run ($25 for either)

2. Register at http://www.racemenu.com/teamelizabeth

to be a virtual walker or runner ($25)

3. Make a donation directly to Be The Match at http://www.bethematch.org/goto/teamelizabeth

4. Make a purchase from Avon and a portion of the sale will go to support the Team Elizabeth Race and Be The Match  http://www.youravon.com/amandajoyce

When checking out use the promotional code: TEAME11

As you can see we have made it possible for everyone, near and far, to be a part of this great event!  If you have questions please feel free to contact me at ehnaylor@gmail.com





Thank you for your ongoing support.

Elizabeth

We have lost a dear friend suddenly and unexpectedly.  I want to be able to write the perfect post but I think re-posting this previous post is best. Chris and Ed I hope you have met, wherever it is that you are now.  You would have been great friends here on Earth. I love you both.

Dear Friend,

I miss you.  There are gaps in my heart as a result of your passing.  Pieces that went with you to wherever it is that you have ended up.  Heaven, reincarnation, dirt, whatever it is that is good and right for you and your soul and being.  I imagine you as a star in the sky, feeling no pain, no worry, and no fear.  Feeling all love and goodness and contentment.  I imagine that you are enjoying yourself as you watch those of us still here and smile.  I imagine you being welcomed by others.  Maybe people that you did not know in this life but who you would have liked.  You all are good to one another, as you were good to me in the time we spent together.  You teach one another as you taught me.  About love, friendship, courage, humor, and grace.  Dear friend I miss you.

With Love,
Elizabeth

Hope is the thing with feathers...

Hope is a word that we use all the time.  "I hope I get a good parking space", "I hope it doesn't rain", "I hope these cookies are tasty".  It wasn't until I really needed to live with hope that understood that true meaning of hope.  Hope is believing in something that may seem unbelievable. Hope is crying uncontrollably because you don't know what else to do, but at some point smiling again.  Hope is living with the fear but not allowing the fear to take over you.  Hope is knowing that things will change, eventually.  

 

Hope by Emily Dickinson

Hope is the thing with feathers
That perches in the soul,
And sings the tune--without the words,
And never stops at all,
And sweetest in the gale is heard;
And sore must be the storm
That could abash the little bird
That kept so many warm.
I've heard it in the chillest land,
And on the strangest sea;
Yet, never, in extremity,
It asked a crumb of me.

This poem by Emily Dickinson speaks to me.  Amazingly, I only recently read the entire poem.  I had only ever heard the first couple of lines, and although I find meaning in those, the whole poem means so much more.  Take some time with it.  Read it. Read it again.  What does it mean to you and your world?

Faith

I am sitting outside the NIH Chapel doors trying to organize my thoughts on faith into words and complete sentences.  A fitting place to be seated but I must confess it wasn't until after I selected a comfortable looking chair that I fully realized my proximity to the chapel.

At some point during my battle with cancer I turned to my husband (the son of a minister) and said, "I'm finished with God.  There can not possibly be a God that would allow this much pain and fear to go on in the world".  Adam, very simply, nodded and said quietly, "ok".

It was during this time of giving up my religious faith that I discovered my need for faith in something.  Something greater than the faith that chocolate would always taste good.  I found my faith in my strength, my love, my power, my humor, and my ability to take what was being thrown at me (even when horribly difficult).

It took about two weeks of "not believing in God" and instead believing inand having faith in myself, to find God and my religious faith.  Don't misunderstand me, I was still (and continue to be) mad at God because he clearly can't fix all that I deem fixable.  But, regardless, I have complete faith in His love for me, just as I have complete faith in my own love for myself.  And in that I have found healing.

Faith & Hope

There is a great deal that I want to say on the topics of faith and hope but, to be honest, I'm having trouble organizing all of my thoughts.  So, instead of rambling along and scaring away readers I thought I'd start by posting some of my favorite quotations.   A longer post with more of my own words will follow soon.

Faith is taking the first step even when you can't see the staircase.
-Martin Luther King Jr.

I would rather err on the side of faith than on the side of doubt.
 -Robert Schuller

Miracles happen everyday.
 -Unknown

Where hope grows, miracles blossom.
-Elna Rae

There are only two ways to live...one is as though nothing is a miracle...the other is as though everything is. - Albert Einstein

"Mommy, Did you win the race?"

Happy 4th of July!  Once again, I say, what a difference a year makes.  Last year on the 4th I "ran" about 20 yards while holding my daughter's hand in a little kids fun run.  At the time I weighed a little over 100 pounds and was on a fairly strict diet that wasn't particularly conducive to flavor, or second helpings.  I was suffering from steroid induced insomnia and had not slept for more than a 3 hour stretch in days.  And I was fairly anxious about getting to +100 days and getting to go home to Massachusetts.

This morning I got up and ran in the Hingham Road Race with my friend Bryan (he was incredibly patient with my pace...and quite enjoyable to run with).  So....last year 20 yards and this year 4.47 miles!

At the end of the race my daughter and husband were there to give huge hugs and smiles.  I picked up my little girl as she asked me "Mommy, did you win the race?"  I was just about to explain to her that, in fact, lots of people had finished before more and a few people finished after me, when I stopped and really thought about the question...."Yes Grace, Mommy did win the race".  She kissed me and I swear in all of her 4 year old wisdom she understood exactly what I meant.

In the spirit of this story, I want to announce to all of you that I will be running in the Maine 1/2 marathon on October 2 with Team in Training.  My sister, Susannah, is the Boston City Team Coach and in addition to being the "Honored Hero" for the team I decided to give it a go.  In doing this race in October I am committing to raising money for The Leukemia and Lymphoma Society.  I am including the link to my fundraising site here as well as at the top of my blog.  Please remember that every little bit helps and every dollar I raise is another dollar that just might help some one like me to win the race.  http://pages.teamintraining.org/ma/maine11/enaylorek4

Today is the first day of the rest of my life

How many times in our lives do we think of "today" as the first day of the rest of our lives?  I know I thought that when I graduated from high school, and again at college graduation.  I certainly thought that my wedding day was the first day of the rest of my life and the day my daughter was born (exactly 4 years ago) was without a doubt the first day of the rest of my life.  At each of these occasions I was sure that this was it, the real beginning, the time I had been waiting for to get my life going. 

On April 6, 2010 I actually experienced the first day of what will hopefully be the very long and healthy rest of my life.  Doctors in more than one hospital were fairly certain that I had less than three months to live.  Fortunately, a team of doctors in Maryland said lets transplant her anyway.  I was young and they wanted to give me a chance.  It turns out it was just what I needed, a chance with a new immune system.

Today, every day is the first day.  Everyday is a day to wake up and make choices about my life.  Everyday is the beginning of something amazing.

Is today the first day of your life or are you waiting for the that day to come along?  It is already here, my friend, embrace it.

Riding with Grace

I am a huge Tim McGraw fan!  I have been for many years and will continue to be for many more years.  Its not just the cowboy hat, although that has its obvious draw, and its not just the fact that one of his daughters has the same name as mine, and its not just the fact that I love his music.  Its all of these things in some combination that I think is changing every so often.  I like Tim McGraw so much that the song my husband (I've made him a fan too) and I danced to at our wedding was "Set this Circus Down".  The song that I grabbed on to with my cancer diagnosis was "My Next Thirty Years".  There are countless other examples of Tim McGraw songs that I can set to instances in my life but that is not what this blog is about.

This blog post is about living and, as you might have guessed, is a bit inspired by another Tim McGraw song "Live Like You Were Dying".  I love this song.  I love it now and I loved before I knew what it meant to be dying.  Its a good song.  But I'd like to change the lyrics.  "Live Like You Were Dying" is about all the things one would do if he/she found out that they only had short time left to live.  This list includes skydiving, bull riding, fishing, and being a better friend.  One line in the song says "And he said someday I hope you get the chance to live like you were dying".  This is what I would like to change.  All of the things listed are things that we should do, or at least the concept is of things that we all should try out.  You may not have any interest in skydiving (I don't) but I am trying to learn French and quite possibly training to run a half marathon (more on that in another post).  I look at all of these things as living like you're living.

Too many of us walk around each day going through the motions and forgetting (or not even realizing) that we can enjoy more.  Yes, we must work and we must take care of our responsibilities but this does not mean that we can't also learn to play the ukelele or bike across the country.  This is living.

I have faced dying and for me it was important to live like I was living and let the rest sort itself out.  Today I strive to remember each day that I am alive and I am living.

Now reader, take a moment to get comfortable and start imagining a warm spring day near the beach.  Imagine the wonderful smell of the ocean breeze and the occasional smell of coppertone.  Add in the feel of a bicycle in the wind, the sound of tires on pavement, and pedals spinning.  Imagine a little one sitting in a kid's seat on the back of the bike shouting "faster Mommy, faster".  Imagine the smile that you would wear as you pedaled the bicycle and remembered to live each day as if you are living, because you are.

I like to think that I face most days with grace and strength, and I know that I face everyday with Grace.  She is almost 4 and the perfect reminder to go faster when necessary and slow down when needed.  Each day, on and off the bicycle I ride with Grace.

Smell the Mud

Spring is my favorite time of year and it always has been.  It possibly stems from having my birthday in early May but having grown up in Maine I think its more likely that spring meant we were done with the snow (most years).  I love the sun, the temperature, the flowers, the blooming trees, and most of all the smell.  In New England that smell is mud but I love it anyway.  Spring this year has been more special to me than any other for a number of reasons including. 

1. I now have two spring birthdays.  My transplant anniversary and my actual birthday.
2. I missed spring last year.  I was inside most of the time and fighting for my life.
3. We're back with the New England mud!  Last year we were in Maryland and it was already hot!
4. We have little doubt that this is one of many more spring seasons that I will enjoy!

Tomorrow I will head down to Maryland to check in with my team and see if, once and for all, we can figure out why I've been spiking fevers seemingly at random.  On the one hand it seems like a long trip for a few fevers but on the other hand where better to go for a fever than the place that saved my life!  The hardest part of these trips is being away from my family for "two sleeps" (that's 3yr. old speak for "two nights").  The second hardest part is the emotions that are brought up each time I travel to NIH.  It is easier today than in was last fall but going back to the place where I spent so much time, so very sick, is...difficult. 


This trip will be different, because it is spring.  I will return to New England on Friday and  it will still be spring and I will stop and smell the mud.

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

A Thank You Letter

Dear Anyone who has ever spent time raising money and awareness for a cause they believe in,

This is a quick note to say Thank You.  Thank you for believing in something enough to make a difference.  Whether you walk, run, bike, swim, donate, hang posters, or plan events you are making a difference.  Not only to the organization that benefits but to the people.  I know in my heart that if you make a difference to one person then that is enough.

This past Saturday I had the chance (with my 3 year old) to cheer on a group of runners doing a 20 mile training run in preparation for the 115th Boston Marathon (April 18, 2011).  This particular group of people (I think there are about 100 of them) is raising money and awareness through Team in Training for the Leukemia and Lymphoma Society.  Saturday was a beautiful sunny day but not at all warm.  We were set up with a decent size group of friends and family of runners at the 15 mile mark.  When these runners got to our water stop they had been running for 15 miles in a bitter wind and not one of them came through without a smile.  Amazing!  In addition, they all said thank you as they ran through.  Thank you for water or cheering or just being there.  I was stunned....they were thanking me?!  I was standing there in multiple layers with fuzzy minutes and the option to warm up inside at any time and these people were thanking me.  To each of them I say THANK YOU.  Each of you is an inspiration to me...and that my friends means that you have made a difference to at least one person, and that is enough.

I was particularly in awe of the fact that four of the runners were wearing shirts with my name written on the back.  "I am running for...."  These runners are my sister Susannah, my friend Jon, my friend Betsy, and my friend Amy.  I can speak to the 4 of you as I say it is truly incredible to see your own name on the back of someone's shirt as they train to run 26.2 miles.  Thank you.  And be sure that you will hear me cheering loudly on Marathon Monday!!

With Love,
Elizabeth

A letter to my medications

Dear Meds,

How's it going?  Did you all enjoy the little vacation you took in January?  I assume you went on vacation, as I have had a continuous sinus infection since then.  I'd like to think that if you were going to go away somewhere you'd let me know first, I count on your watchfulness to help me stay healthy.  It appears though that whichever one of you was supposed to fill me in, got a little to excited about the cruise or the skiing or the warm beach, and forgot their pre-vacation job.  As a result, and I imagine you've noticed, I'm now taking an additional 8 pills a day on top of the 14 of you.  Now Meds, is this really fair?  I don't think so, especially since I didn't get to enjoy the vacation part of this deal.  I'm still here in the cold and snow waiting and hoping for spring to arrive!

So, next time you all decide you'd like to get away for a bit could you please run it by me first?  I'm sure we can work something out that would allow for me to stay healthy and empty of snot and for you to get your trip.

Sincerely yours,
Elizabeth

A Letter to my body

Dear Body,

Thank you!  You have put up with so much and are still here, ready for whatever comes our way.  When I was a kid you put up with broken fingers, twisted knees, sprained ankles, even a sesamoidectomy (look that one up on google).  In college you tolerated a night or two of too much alcohol and a cafeteria based diet that no one should live by.  After I was married you helped me to carry and then deliver my beautiful daughter and then recover from the experience. 

Most recently you helped me through the fight of my life.  Cancer was scary and terrible and painful and exhausting but you, body, stuck with it and here I am.  You dealt with high powered chemicals being injected into you.  You have handled countless x-rays, CT scans, PET scans, and MRI scans - who knows how much radiation and radioactive material that equals.  You not only accepted a whole new immune system but you figured out how to keep its strength in check while allowing it to fight my cancer.

In addition to the medical side of it all you dealt wonderfully with the variety of diets that I put you through.  From the apple sauce and jello diet, the popsicle and gatorade diet, the ice chip diet, the clear liquid diet, and (my personal favorite) the "wet" foods diet, you dealt with them all and sustained me throughout.  The "wet" foods diet raised a lot of eyebrows but you never questioned me as others did.  You never asked "what do you mean by 'wet' foods?" or "Why exactly isn't milk a 'wet' food?'  You accepted, without, question that "wet" foods was any food that tasted or felt wet, milk felt dry.

You have dropped from a, perhaps, too healthy weight (ie. maybe a little on the high side) to a far too low weight, and now up to a weight that we can all happily live with.  The low weight made it difficult to walk any distance without feeling week.  It made us think about going downstairs because we weren't sure if we would have the energy to get back up.  It made us take multiple hot showers each day to keep warm despite the 90+ degrees and 100% humidity. 

You, body, brought us through all of that.  You amaze me.  Thank you.

With Love,
Elizabeth

PS. My next letter will likely be to my brain...didn't want to exclude it in the thank you!

Letters...

In November 2010 I wrote 3 posts in a series titled "Who Am I", since then I've felt my postings have been a touch scattered and without an overall direction.  In an effort to focus (a bit more) my posts I'm going to start a new series that I am calling "Letters".  I don't yet know how many posts this will include so we can see together.

Today's post is a letter to a friend.  Some of you may read this and think you know who I am writing to.  But, honestly this letter is addressed to "Friend" and not a particular name because it could be a letter to many people.  If it strikes a chord with you than go with it...that is fine by me.

Dear Friend,

I miss you.  There are gaps in my heart as a result of your passing.  Pieces that went with you to wherever it is that you have ended up.  Heaven, reincarnation, dirt, whatever it is that is good and right for you and your soul and being.  I imagine you as a star in the sky, feeling no pain, no worry, and no fear.  Feeling all love and goodness and contentment.  I imagine that you are enjoying yourself as you watch those of us still here and smile.  I imagine you being welcomed by others.  Maybe people that you did not know in this life but who you would have liked.  You all are good to one another, as you were good to me in the time we spent together.  You teach one another as you taught me.  About love, friendship, courage, humor, and grace.  Dear friend I miss you.

With Love,
Elizabeth

Survivorship

The following chain of events makes up the harder thing I have ever endured in my life: Diagnosis of non-hodgkins lymphoma, 3 types of unsuccessful chemotherapy, an experimental transplant and now survivorship.  I was so certain throughout it all that if I could just get to the other side everything would be ok.  I would be able to sleep through the night, I wouldn't need so many pills, I wouldn't think about my cancer every single day.

I suppose I should say here that I am truly grateful to be here today and recognize that it feels funny to complain about anything when not that many months ago a number of very smart doctors didn't think I'd make it.  But guilt aside, being a cancer survivor is hard work.  It is hard to see the scars all over my body, it is hard to take the almost countless pills everyday, it is hard to continue to get bloodwork even though my veins are basically shot, it is hard to sleep through the night, it is hard to remember that a cold can just be a cold, and it is hard to know that I put so many loving and caring people through so much. 

I look forward to the day that I wake up in the morning (after sleeping through the whole night) and the first thing I think of isn't cancer.  I look forward to the day when a trip to the doctor doesn't require deep breathing exercises and sometimes medication.  I look forward to the day when I can explain the last 2 years to my daughter so that they stop being something scary to her.  Basically, I look forward to feeling normal again.

I do not need nor want to go back to the way I was prior to diagnosis but a sense of normalcy would be nice.  A small sense that the whole world won't come crashing down in an instant.  Not so sure that is too much to ask.

TEN THINGS

Ten things that made a difference to me while I battled with Cancer

1.) The cards.  Each and every card that I received during the time that I was being treated for cancer brought a smile to my face.  It did not matter if the sender wrote a novel or one line, it was truly the thought that mattered.  I still have each of those cards stored in several boxes and bags.

2.) The phone messages.  I was often unable or not interested in speaking on the phone and many people respected that and would leave me kind and thoughtful messages that did not require a call back.

3.) The hugs.  Having cancer makes you feel different from everyone else and no matter how much support you have around you, you still often feel very lonely.  Receiving a hug was a gentle reminder that I wasn't alone.

4.) Being alone.  From the time I was diagnosed in October until March when I spent time in a hospital in Greenwich, Connecticut I was almost never alone.  I had friends and family, Doctors and Nurses everywhere I turned.  That hospital stay actually gave me the first chance to be by myself for a bit.  And being alone every now and again made me feel "normal".  How many adults do you know that are never alone?

5.) "Normal" conversations.  People who would talk to me about things other than my cancer and my treatments.  I certainly wanted to talk about those things at times but it was so important to me to hear about the "non" cancer world too.

6.) The books.  I have two shelves filled with books that people either gave me or recommended to me.  Many of them have to do with cancer and healing but there are also poetry books, prayer books, fiction books, and biographies.  I love to read and each one of those gifts provided me with that outlet as well as a connection to the giver.

7.) The movie Notting Hill.  This movie was loaned to me by a dear friend and I lost count after probably the 15th viewing.  It was funny, and sad, and funny.  It made me smile over and over again.

8.) Gatorade.  Many people brought me many bottles of gatorade.  Thank you.  A person can only drink so much water and when you are constantly trying to maintain hydration something a little different is amazing!

9.) Questions.  Lots of people were afraid to ask me about my disease, my treatment, or my prognosis.  At the same time many people were able to ask me those questions.  While I didn't always want to talk about it, nine times out of ten it was a relief to be able to talk about it.  To answer other people's questions provided me with a small sense of control of the situation.  It cemented for me that I did know what was going on with my body and medications.

10.)  Continued support.  My journey with cancer is not over.  I may have clean scans and the knowledge that there isn't any cancer activity to be seen in my body but the nightmare that is a cancer diagnosis doesn't just disappear when you get a clean scan.  Visiting the doctor is still scary, bloodwork is still hard to obtain (my veins are shot from chemo), and not a day goes by that I don't think about all that I have been through.  The continued support from friends and family is so important in whatever form it takes.