Hopes and Dreams, and Never Will I Ever

So here we are- 9 days away from the 6th and final round, the grand finale, the final send off.


And I am excited.
Really really excited.
Can't sleep kind of excited.


Aside from turning a an interesting shade of grey this round, my newest side effect has been insomnia. I haven't struggled terribly with sleep up until now. This week my mind has been waking me up at the crack of dawn with unusually creative ideas. I never really saw myself as being that creative, but apparently Cancer has an interesting way of reawakening parts of myself that have been dormant or never tapped into.


I wake up in the middle of the night with new choreograpahy, a new photography idea, a new topic to write about. I also have an ongoing list of "hopes and dreams" and a "never will I ever" list that continues to evolve and grow.


I thought I would share some of these ramblings with you.
(Please note these are in no particular order)


Hopes and Dreams
To get caught running in a rain storm.
To put my toes in the sand.

      To feel the sun on my skin.

      To smell Spring.

      To enjoy a glass of wine with close friends.

      To enjoy food again.

      To get lost in conversation.

      To eat healthy and move my body every day because its a way of life.

      To get back on the dance floor.

      To learn how to box.

      To run a 1/2 marathon.

      To raise 18,000 for the Leukemia Lymphoma Society.

      To organize a Twist out Cancer benefit to celebrate life, music and dance.

      To mentor another Cancer patient when I am ready.

      To travel often and with those I love and can't live without- please note this is a separate list entirely.

      To take photography lessons and master my SLR camera.

      To attend a Paul Simon concert.

      To figuring out what paying it forward means.

      To continue to work hard at strengthening my mind, body and spirit.

      To remember what feeling sick is like.

      To remember what fearing death is like.

      To remember what it feels like to have my life taken and then given back.

      To remember what hypercolor looks, feels, tastes, and smells like.

      To remember what G-d feels like.

      To be thankful for waking up.

Never Will I Ever

Never will I ever spend an entire day inside.

Never will I ever watch more than 2 hours of TV in one sitting.

Never will I ever go for a week without exercise.

Never will I ever go a day without telling my family that I love them.

Never will I ever not think of reasons why I am thankful.

Never will I ever think my body can’t handle it.

Never will I ever lose my voice.

Never will I ever forget what its like to be trapped in a  600 pound lady’s body.

Never will I ever forget what its like to struggle with a flight of stairs.

Never will I ever forget what it feels like to be betrayed my body.

Never will I ever forget what it feels like to be pitied.

Never will I ever forget what having no immune system feels like.

Never will I ever forget the power of the mind.

Never will I ever pretend to be a Cancer expert.

Never will I ever forget to breathe.

Never will I ever forget life’s fragility.

Never will I ever forget that in order to experience today I need to live in this moment.

What are yours?

Dear Frank: Way to Man Up!

This morning I woke up to one of the best emails I have received since diagnosis.

It was an email dating back to 2008 from let's call him Frank.

Frank:
Hi Jenna, 
None of my friends and I are going ice skating on thursday evening. Would you like to join the party?


Jenna:
That message is freaking hilarious.
Join the party of one.
Ok then.


April 25, 2011
Frank:
Jenna, I just want to congratulate you on having the strength and courage to fight your cancer. I'm sure it has changed your life forever and will make you appreciate ever day you wake up to the fullest. I still remember ice skating with you in Millenium park a few months before I moved out of the country. Sorry for being a jerk to you after that night. But these are small things compared to the mammoth events we deal with through our lives, particularly yours. Take good care.



Dear Frank,
First and foremost thank you for digging up our email exchange from 2008. Your approach to asking me out was pretty adorable. Also- way to man up! Nothing like an apology 3 years later!  Apology accepted, and no need to apologize- dating is a jungle out there.


Hope you are rocking out.
-Jenna

This whole email exchange really made me laugh, and also made me pause.  Thank you Frank for having the balls to own up to being a jerk after ice skating. Thank you Frank for reminding me how insignificant our failed date was in the scheme of my life.  Thank you Frank for giving me insight into how Cancer can cause us to think about how we treat each other.

Does it have to take a Cancer diagnosis, for us to treat each other better?

If there is anything I have learned over the past five months, it's that life is fragile. We have a limited time here, and during that time we need to be good to each other- really good to each other.  That does not mean we won't mess up, but it means we should be making a concerted effort to be better.

So thank you Frank for making me think about how we treat each other.  Thank you Frank for making me reflect on those I have hurt and mistreated. And thank you Frank for reminding me how that there is nothing like a good apology- even if it's three years late.

Help Me Kill Cancer in the Butt One Mile at a Time

On September 11, 2011, 4 months after the completion of my treatments, I will be running in the 15th Annual Chicago's 1/2 marathon with the Leukemia and Lymphoma Society( LLS).

LLS is an organization that raises millions of dollars a year to fight blood Cancers. I have a special connection to LLS as it was responsible for discovering the drug Rituxin which has saved my life. I am forever grateful to LLS for their work in raising awareness and finding a cure for my disease.

I was never a runner before Cancer. I actually hated running. After my diagnosis I found running to be therapeutic because it allowed me to process my feelings and reconnect with a body that I no longer understood.

Throughout my treatment, I have been running 6 miles a session-one mile for every round of chemotherapy.

I ask that you join me in Killing Cancer in the Butt one mile at a time.

I am running this race for the Cancer Crushing Warriors that are fighting and desperately waiting for a cure.

I am running this race for your family and friends that have been cruelly touched by this disease.

And I am running this race for you- my army of supporters, cheerleaders, and dancers who have lifted me up and provided me with tremendous ammunition throughout my fight.

I encourage you to give generously.

To contribute to my campaign please go to

Kill Cancer in the Butt One Mile at a Time

With affection and admiration,

Jenna

Forget Pause- It's Play.

What I wrote earlier today was shit.
Shit shit shit.

I woke up this morning noticeably irritated with no explanation as to why.

My mom came in to check on me to see how I was feeling and I scoffed at her. She sheepishly closed the door puzzled by my reaction.  Note to self- staring at the closed door really hard, after rudely greeting my mother does not equal an apology.

On to my next victim!

I slowly ventured downstairs to find my dad staring at the computer, patiently waiting for 8:00 am to arrive so he could purchase Amos Lee Concert tickets for our upcoming family trip to Traverse City, Michigan. It was 7:15 am and he had 45 minutes to go. As he sat there staring, watching the empty seats, my blood was boiling.

"What a waste of time already!" I exclaimed as I ran off with my Kosher for Passover Honey O's.

Clearly something was up.

Why was I so annoyed? Why was I such a raging bitch?

My poor poor parents.

After I had some food in my system and I had calmed down, I started to think about what could possibly be bothering me.

Well- as it turns out, a lot.

Today I got pissed at Cancer.
Real pissed.

Throughout this journey I surprisingly haven't felt a lot of anger. I have felt sadness, loss, fear, and panic. But anger- not so much.

Today I got angry.

I was angry about vacations I had to cancel, work engagements I couldn't attend, weddings and baby showers I had to bow out of.  I was angry about the dates I could have gone on, the glasses of wine I could have shared with friends, and the conversations I could have gotten lost in.

Tonight I realized that while I may have missed some moments, I have created and savored many more.

I haven't been on pause- I have been on play.

Tonight I connected with a 29 year old Chicago native who was just diagnosed with B Cell Lymphoma and is about to undergo the same chemotherapy regimen.
We talked for 2 hours and I told her my story in the hopes that I could impart some knowledge and wisdom about what lies ahead for her.

It's one thing to write your story- it's another to say it.
Tonight it felt really good to share.
Connecting with her made me realize that while I have missed out on certain activities and milestones, I have learned and experienced what most don't have the opportunity to learn in the course of a lifetime.  The ability to answer her questions, calm her nerves, and give her hope, made me realize that I have not been on hold, I have been hard at work.

So I guess this is me apologizing for my shitty entry earlier today. The entry where I felt bad for myself, and started to complain about not being able to write my own narrative.  As it turns out I have been writing it all along, I just haven't been listening.

Slowly Moving from Pause to Play.

With round 5 complete, and round 6 only 14 days away, I have started to think about what life may look like when I release the pause button and actually press play.

For the past 5 months, my world, my life, my blood, has been put on hold and held captive by Cancer. As my moments turned into hours, days, weeks, and months, I have stood still, patiently waiting. 

I am waiting to be included, waiting to be apart of your story, waiting to write my own. 

While patiently waiting, I have quietly watched your lives unfold. 

I have seen love grow and develop, relationships tested and strengthened, and the miracle of life be brought into this world. I have watched you struggle with career choices, debated next steps, and wrestled with life's uncertainties.  

As I stopped, you continued. As I watched, you played.  

As I get ready for my last round, I am trying to visualize what pressing play looks, feels and tastes like.  

Does pressing play mean taking chances, setting goals, and building a future I can be proud of? Or does pressing play mean living here in this moment- one breath at a time?

While it may seem that I am standing still, there is so much of me that is moving.  I just hope my body will eventually catch up to my mind, heart and spirit. Perhaps it is then, when I can finally say, I am no longer on pause, but rather on play.

 

Releasing the Shackles That Bind Us.

Passover has always been my favorite holiday growing up. It's a time for family, friends, acquaintances and strangers to gather around a highly ritualized home cooked meal, to retell the story of the Jews tumultuous exodus from slavery in Egypt, to victorious freedom in the Land of Israel.

As the story is slowly recounted in a pragmatic, and reflective way, participants have the opportunity to examine how both the Egyptians and Israelites endured extreme physical, spiritual and emotional trials and tribulations, for excruciating periods of time.

While the Jews and Egyptians personal circumstances and roles in the story may be strikingly different, both groups experienced a state of ultimate bondage.

Trapped by historical circumstance, forced to question and reevaluate their ideologies, priorities and  moral compasses- the Egyptians and Jews were in a state of purgatory.

In anticipation for this year's Seder, I was concerned that the spirit and meaning of the holiday that I love and cherish would somehow become silenced by the whirling checks for vitals, the beeping of my chemo machine, and the inevitable slowed cognitive functioning that I typically experience towards the end of my five- day hospital stay.

Instead, this year, the Passover story resonated with me in a way that I never would have anticipated. The words leapt from the page quickly and forcefully, slowly entering my heart, embracing my spirit, and enveloping my mind.

 It was as if I was reading the story for the very first time.

For the past 5 months, my family, friends and loved ones have been shackled by Cancer. Some of you have become completely deeply entangled in my journey, whereas others of you, are watching and learning from afar, trying to understand what it may be like to be bonded at the age of 29 by a disease we simply don't understand.

No matter how you are experiencing my struggle, whether intimately or from a distance, your desire to better understand my fight and my journey, perhaps is also about your desire to better understand your own.

You don't have to have Cancer to feel trapped. You don't have to have Cancer to assess your values and priorities.  You don't have to have Cancer to reevaluate your life.

While I have spent the past five months, watching my body evolve into a somewhat unrecognizable state,  my internal world has strengthened and transformed in ways I never thought possible. As my body continues to weaken, my mind, heart, and spirit have taken the lead, working tirelessly around the clock to release myself of my own personal shackles.

During this Passover holiday, regardless of your religious or spiritual affiliation, I hope that you will take the time to think about what binds you. What holds you down, discourages you from moving, and prevents you from taking that leap of faith to live brighter, bolder, and in this this moment.

There is a passage in the seder that says " When I passed over you and saw you wallowing in your blood, I said to you: "Through your blood live!"

As I continue on this timeless journey to break free from the bondage of Cancer, I hope to always remember that the answers for really living are there in my blood.

My wish for you in the days to come- is that you experience reflection, understanding, and perhaps some release from the shackles that bind you in order to better understand what it means to really live.

Holding on to Hope.

When I was diagnosed on December 20, 2010, I remember clearly how fear paralyzed my body, but freed my mind.  As I sat at the dinner table with my parents and my ex-boyfriend Marc, we were speechless -but we were communicating. After what felt like an hour of silence, I turned to them and said,

"I know that I am going to beat this. I know that I am going to beat this because I love my life too much. I know that I am going to beat this because there is so much change that I need to make.  I know that I am going to beat this because there is so much that I want to do and see and so much that I want to give."

I knew how badly I wanted to beat this disease, but I also knew that I was going to have to use all of my past experiences, all of my past disappointments and triumphs, in order to do so. I was going to be tested in a way that would require me to dig deep, and draw upon every last strength.

I knew that I was going to survive this disease with the same certainty that I knew I was going to be diagnosed with Cancer.

Starting at the age of 6 or 7 I remember being in my childhood bathroom and staring at myself in the mirror wondering what I would look like bald. I was even able to visualize myself in a hospital bed, fighting the disease. I have no idea why this image was so pronounced for me - but it was. At that point in my life I hadn't been touched by Cancer, and so I have no real explanation for you as to why I knew this to be true.

While I knew that I was going to get Cancer, I did not think it would be at 29.

A friend of mine from college lost his mother to Cancer a few years ago and he wrote to me early on in my fight.  While its always hard to know exactly what to say, his words really resonated with me. He told that while his mom was fighting, his family was overcome with anger, uncertainty, and fear- causing them to lose sight of hope.  His one wish for me was to hold on to hope.

And so, I have held on to hope with the tenacity in which I want to live.

Here we are in round five- and this time it feels different. While I am actively fighting, I am also willingly sacrificing my body.  I assure you this is not being done out of defeat, but rather has more to do with acceptance.  By accepting what will happen during recovery, my sacrifice feels like an intentional act of victory.  I am welcoming the pain, I am embracing the difficult days ahead, and I am preparing for the emotionally draining moments in isolation- because I am hopeful.

My body may continue to be compromised and tested in the days to come, but my heart, mind, and spirit will continue to be strengthened and transformed- because I am hopeful.

While I am of course fearful about the return of disease, I feel as if I was given a second chance to really live. And so that is what I intend to do. I intend to live loudly, to live brightly, and to experience today by savoring this moment.