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.

Remember to be thankful

His name was Michael and we happened to be receiving infusions in side by side chairs in the day hospital at NIH.  It was my day +100 post transplant and when the infusion of anti-fungal medication was finished I was headed for my PET Scan.  Adam and I were both a bit anxious to say the least.  I didn’t actually learn Michael’s name until after he had left and I asked his nurse.  While he and I were talking names just didn’t seem important.  The commonality of our experiencing, the nightmare of cancer was enough.  We talked a bit about NIH, the weather, his recent scans that had turned up positive results, and my upcoming PET Scan.  Michael’s infusion was complete before mine, but before he left the room he did something that I will never forget.  He walked over to my chair and asked simply “Do you wear a Livestrong bracelet?”  I said no, that I wore a Team Elizabeth bracelet and had just never picked up a Livestrong one.  Michael proceeded to take off his own yellow bracelet, revealing an incredible tan line (clearly this bracelet had been there for a while).  He handed me the bracelet and said “This has helped through some really tough times.  I think you could use it today.  You’re scan will be fine.”  I barely got out the words Thank you as he smiled, waved and left the room.  Thank you Michael for making a difference in my life that day and each day that I continue to live, getting healthier and healthier.  You were right, my PET Scan was better than fine.