Today...an Anniversary

Today is August 31st, 2010.  One year ago today I visited my primary care physician with a cough and some chest pain.  I had already self-diagnosed myself with Pleurisy (an infection in the lining of the lung that causes pain when coughing, generally reserved for old men who smoke).  Seems like a silly diagnosis in hindsight but I had had it once before and the symptoms fit.  It was the first day that teachers were to be back at school and at that point I'd been coughing and uncomfortable for several weeks...it didn't make sense to me to start the school year sick.  My Doctor seemed comfortable with my self diagnosis but ordered a chest x-ray to rule out things like pneumonia.  My appointment wasn't until late in the day so the radiologist had gone home and wouldn't see the x-ray until the next day.  No big deal right?!  The following day I received a message on my phone from my doctor asking me to call about my x-ray.  I remember thinking this was odd but wasn't too worried about it.  We played phone tag that day and I finally got her on the phone the following day (Wednesday, Sept. 2).  "There is something on your x-ray.  We don't know what it is, it could be as simple as a shadow.  I've ordered you a CT Scan for next Tuesday."  What?!  We tried really hard to spend the next 6 days without stressing out, of course it was a shadow, it couldn't possibly be anything worse than that, I just have a cough.

When my CT scan was finished the technician told me that my doctor would call me within 48 hours with the results.  She called me an hour and a half later and had already scheduled me an appointment with a thoracic surgeon at The Brigham and Women's Hospital.  "You have a very large mass in the right, center of your chest".  Again, What?!  The diagnosis process began there.  I'm sure I'll write more about it in the future but for now that's enough for me.

So, today is the one year anniversary.  In many ways it feels like 10 years.  I have been through so many tests and procedures and nightmare situations and yet here I am today living.  My family has been living this nightmare of a roller coaster ride with me and I thank them everyday, not always verbally but always in my heart.  I am here today for a number of reasons but my family gave me the biggest reason there is to keep fighting, always keep fighting.  I am here today living my life to the best of my ability each and every day.  Taken life one step, one day at a time.  Appreciating the little things as well as the big.  Today it has been one year and I look forward to being here to see many, many more of these "anniversaries" come and go.

A weekend to love living!

I am certain that I could give a reason everyday to remember to appreciate, love, and not take for granted your life.  Right now, however, I want to tell you about my weekend and how it reminded me to appreciate, love, and not take for granted each day that I live.  If I have counted correctly then Friday was day +143 post transplant and I started the day with a three mile bike ride with Grace on the back in her seat.  To be totally honest the start was a touch ungraceful and resulted with a bruise here and there (on me not Grace) but the ride itself was incredible!  The wind, and the sun (not to worry I wore  plenty of sun screen and long sleeves) and Grace beyond me shouting "Faster Mommy Faster!"  It was perfect!  And it was something that not that many weeks ago I'm not sure I could or would have attempted and not that many months ago feared I would never be able to do.

Saturday morning I got up early to meet the Team in Training Winter Team out of Boston.  I was asked to be their "Patient Ambassador", basically putting a face to the disease that they are running and fundraising for.  I'm not wild about the term "Patient Ambassador" and mentioned that Saturday morning so it was suggested that we could use "Honored Hero"...I like it.  I had the opportunity to say a few words to the team before their run about the past year and about what Team in Training has meant to me.  I hope it was interesting to them as it was a positive experience for me.  I look forward to visiting at future practices and cheering these runners on while they work to help support research to find a cure for Leukemia and Lymphoma.  On a side note, if anyone has any interest in more information about Team in Training or the Leukemia and Lymphoma Society please don't hesitate to email me. 

My Saturday afternoon was spent with a mini shopping spree at Old Navy...you can't beat 30% off with 5% of my sales going to the Leukemia and Lymphoma Society.  And since chemo and my transplant left me several sizes smaller than I was it is necessary to periodically add to the new wardrobe!  The rest of the afternoon was spent by the condo pool with Grace.  I under an umbrella while Grace managed to con several different neighbors to play with her in the water.  Thank you to each and every one of them!  We ended the evening having dinner by the pool with friends and neighbors, perfect!

Today, day +145 included a trip to see and ride on Thomas the Tank Engine, a carousel ride, and Grace's first amusement ride by herself.  She was quite the pilot of the Red Baron plane ride!  And lastly, this evening Adam and I enjoyed a dinner out followed by a concert that included The Blind Boys of Alabama and Dr. John and the Lower 911!  It was an incredible show!

So, my challenge to you as you begin a new week and a new Monday is to find the reason (or many reasons) to appreciate, love, and not take for granted the day you have been given.

Blog Title Explanation

Many of you have probably figured out the meaning behind the name of this blog but for those who haven't I thought I'd take a minute and explain it a bit.  I was born on May 4, 1979.  I received a bone marrow transplant (my sister was my donor) on April 6, 2010.  I said pretty quickly that this equals 2 birthdays!  Two times a year to formally celebrate my life!  (A quick moment to thank my brother in law, Andrew, for sharing the April birthday with me).  I do my best to celebrate my life each and everyday but why can't I have 2 parties now?!  The answer, I can!  And plan too.  So, while cancer has taken much from me and my family over the last year it has also given a great deal and 2 birthdays is certainly a gift!

Inspiration at the Y

Since coming home from Maryland about 5 weeks ago life has been quite an adjustment.  This is an adjustment we expected but couldn't really prepare for.  How do you prepare to reenter a world that has continued forward while your world has been put on hold and fast forward all at the same time?  How do prepare to see friends and family whom you have not seen for maybe weeks, months or almost a year?  How do relearn what it means to live life, really live it, while still getting bloodwork twice a week and always waiting for the next 4 week check up in Maryland?  You don't really prepare for it.  You take it one day at a time, putting one foot in front of the other until you have reached the goal. 

Back in October when I was doing the first type of chemo that we tried my goals in the days following treatment would be something like this: Today I will get out of bed long enough to get the mail.  Or Today I will move to the couch.  I've come a long way from simply getting to the couch or the mailbox.  I am now swimming at the Y 3 days a week and I've started a once a week yoga class there as well.  I'm able to play with my daughter for hours at a time not minutes.  And I even went to a birthday party for a dear friend last night!  One of the many, many, many things that I have learned throughout this experience is that goals are important.  It was important for me last fall to get to the mailbox just as it is important for me now to get to the pool.  On the wall at one end of the pool the Y has hung 4 banners each reads a single word.  I memorized them within my first couple of laps on my first day at the pool: Responsibility, Respect, Honesty, Caring.  To be totally truthful I memorized them quickly because it was easier for me to keep track of how far I had swum by which banner I was on than to try and count and swim at the same time.  However, those banners have become a mantra for me, an inspiration.  Each lap I swim lines up with one of those words and that is what I think about while I swim that lap.

Here is a small taste of what goes through my mind with each banner:
Responsibility:  I am taking responsibility for the health of my body.  I am taking responsibility for my mental, physical and emotional health.  I am taking responsibility for my life.

Respect:  By swimming these laps I am respecting the body that I am so very blessed to have.  By swimming these laps I am respecting those cancer survivors and patients who can't yet get in the pool or won't be able to get in the pool.  By swimming these laps I am respecting the life that I have the opportunity to live.

Honesty:  Honestly can I swim one more lap, yes or no?  This swimming is good for me but I can overdo it.  Honestly, it does not matter that the woman in the lane next to me (probably 30 years my senior) is out swimming me tenfold.  Honestly what matters is that I am here and I am trying.

Caring:  I am caring about my body.  I am caring about my life.  I am caring about my family.  I am caring about my friends.  I am caring about the journey that I have been on and will continue to grow on.

If you have the chance to really think about these words and put them into your life I am certain that you will find great things inside of you.  You will think great thoughts and set and achieve great goals.  We all, no matter what life has thrown at us, can take responsibility, have respect, be honest, and care.  Give it a try, you'll be glad you did.  And as always, hug someone you love today.

Benedryl Fog

It will be so nice to have a day or two when something totally bizarre doesn't happen to me.  But alas yesterday was not that day.  Last night while watching some TV with Adam I decided to try some of the cashews that he was munching on.  Turns out, this was a bad idea!  Apparently I have what looks like a cashew allergy and was lucky enough to spend about 4 hours at the emergency room with my neighbor and friend John.  We left Adam at home to be here for his own sleep and in case Grace were to wake up...no need to freak her out so soon after a year of many freaked out moments.  Up to this point in my life I have never been allergic to any food and thus the reaction was a little weird to identify at first.  I just kept sitting on the couch saying "something isn't quite right".  I finally gave a call to the transplant unit down at NIH (you've got to love that when I call a Doctor it isn't the one who is 20 minutes away but instead I call the one who is 10+ hours away...what can I say, I trust my team above all else).  The transplant unit said in no uncertain terms that I was to get to the emergency room even if it meant calling 911.  For those of you who have been to my house you know that calling 911 on the phone would almost be silly, we could probably just yell across the street and call them that way.  So at this point we're unsure if its only cashews (oddly enough I had a peanut better sandwich for lunch yesterday and had no problem whatsoever) or how it may or may not be related to my GVHD but NIH is looking into such things for me. 
Today has been a great day so far despite the slight benedryl fog that I am in!  Grace hasn't seemed to notice it so I suppose that's a good thing.  Hope all are well.

Sunrise on Nantasket Beach

Yesterday morning, like most mornings I was awake well before 5am.  I lay in bed trying to sleep for quite a while before deciding, as I do most mornings that this is futile and I should just get up.  Yesterday was a little different though, I decided to go for a walk down by the beach.  This isn't something that I can do during the day without boatloads of sunscreen, a large hat and long sleeves (needless to say, this gets hot).  But, at 5am it is still slightly dark and not all that hot...perfect for walking by the beach.  At the start of my walk I met a man with his new puppy who had just had her first walk on the beach and was wildly excited about it.  Honestly, if it wouldn't have been totally ridiculous I might of been jumping up and down and shaking my tail in exciting just as this puppy was doing.  Not only was this my first walk at the beach since last fall but it is amazing to remember that I am lucky to have the opportunity to get up everyday no matter how early it may be.  But, folks, the best is yet to come...I was just in time for the perfect sunrise.  If you haven't been to the sunrise in a while, or ever, please take the time to do so.  It changes you or at the very least it changes your day.  If you can't get to the sunrise anytime soon please enjoy the picture of what I saw and have posted here.  And remember to appreciate the little things, like a puppy at her first sunrise.

Healing and Control

It has not yet been a year since I was diagnosed with Primary Mediastinal B-Cell Lymphoma (a form of Non-Hodgkins Lymphoma.  It feels like its been a decade.  In January of this year we began using the site Caring Bridge to share with our friends and family my progress, setbacks, and journey (which continues) through cancer.  There was and continues to be much to be said and shared but I've decided to move from Caring Bridge to this blog.  It is a control decision for me.  Anyone who has experienced cancer closely knows that one of the hardest parts is the loss of control in almost all parts of your life.  For me I am now choosing to write about the healing and growing part of this lifelong journey that I am on, in a different forum.  Basically, what I am trying to say is we began using Caring Bridge so that we could easily keep friends and family updated on my medical condition as well as share some funny stories along the way.  Caring Bridge was what we used because I was very sick.  I am not cured yet but I am much better than I was and although I have a gazillion pills to take every day I am here every day to take them.  This blog is about healing and about gaining back control.  I hope that you will enjoy, both new readers as well as those of you who have followed the Caring Bridge posts.