Tuesday, May 31, 2011

The Importance of Numbers.

Over the course of the last 6 months, I have become fascinated with numbers.  In an earlier blog post I mentioned how my dear friend Holly, a New York City Public School English Teacher was hit by a drunk driver and had been struggling to find her voice. She was unable to describe her experiences using words, and found herself relying on numbers. 
Holly hates numbers.

After months of hard work and digging deep, Holly reclaimed her voice and has started writing again. Her mind is sharp, her word choices are poetic, and she is perhaps stronger now than she has ever been.

Similar to Holly, I also recognize the importance of numbers, but have not been strangled by them. 

6 rounds of chemotherapy, 6 months of treatment, 6 months that passed between my Cancer diagnosis and contracting a near fatal bacterial infection.

6 x 3= 18= Chai in Hebrew= Life.

2 month's ago when I signed up for the Leukemia Lymphoma Society's Team in Training 1/2 Marathon
I set my goal at $18,000 because it symbolized life.

Is this all a coincidence?

Is it possible that I am placing too much emphasis on numbers because I am searching for meaning?

Before I entered round 6,  I impulsively decided that I needed to move in order to have a fresh start. My apartment reminded me of Cancer and I desperately wanted my home to represent growth and renewal.  It was almost serendipitous that my current lease was expiring on June1st, the date that my body eventually rebounded from my last stay at Hotel Prentice. 

This past weekend I moved from the 30th floor to the 29th floor.

29 has been a tough year, but also one that has been colored by profoundly beautiful changes.

On October 4th, when I celebrate my 30th birthday, I will welcome this day, this year, this decade with open arms.

Every day when I enter the elevator and hit floor 29, I will be reminded of how I needed to get through the darkest days of 29 in order to fully understand how to embrace 30.

Sometimes you have to take a step back in order to take a step forward.

I can only hope that the memories created in this new living space will be described using words like healthy, strong, love, and life.

I believe that sometimes numbers have the power to lead us to the words that we have been searching for.

Wednesday, May 25, 2011

Patient and Patience.

I have been thinking a lot about patience.

The word patient lives within the word patience.

It is impossible to survive life as a Cancer patient without understanding the virtue of patience.

After 6 months, and 6 rounds of Chemo, I never anticipated returning to floor 16.

As I was preparing to reenter the world, after demonstrating remarkable patience, I was faced with the ultimate test and forced back into life as a patient.

For the last five days I fought for my life, fought against the clock and fought against fear and anxiety.

I had no choice but to draw upon all of the lessons learned from the last six months in order to battle the bacteria that had spread from my urine into my blood stream.

My life- my world, was yet again, there in my blood.

I prayed that my rebuilt immune system would know what to do, would know how to fight, would know how to protect me from unwanted invaders.

Not only did she know what to do, but she fought with an alarming ferociousness that caused the bacteria to cower in fear and evacuate the premises.  My immune system was committed and determined to protect me- and that is exactly what she did.

The bacteria Serratia that was found in my urine, in my blood, and on my port, was swiftly eradicated.

On Monday afternoon, as I left the hospital for what I hoped would be the last time, I was unable to control the tears and overwhelming sense of gratitude that I felt to be alive.

The last 5 days were without a doubt the most difficult of my life. I would even venture to say that fighting off what could have been a fatal infection, was more trying than being diagnosed with Cancer.

I am now at home in my apartment and on the mend. I am doing my best to manage the pain, and once again I am learning to embrace patience.  In some ways, the pain has forced me to tiptoe back into the world as opposed to sprint. I cannot jump back into the life that I used to lead, or into the life that I hope to one day experience.  Instead, I have no choice but to slowly, methodically, and carefully reemerge.

As I slowly creep out of the shadows, I look forward to dancing with you in the sunshine.

Until then, you can find me tiptoeing.

Tuesday, May 24, 2011

Round Six- and then round Seven?

As most of you know by now- round six was filled with lots of surprises. Just as I was about to enter the real world, I contracted a few infections that forced me to confront fear and pain. As it turns Dr. Gordon and his team of angels rebuilt my immune system to operate and function much like a Pink Cadillac. Rebuilt and refurbished, my immune system which had only been functioning for a day, took down three infections like it was going out of style!  

What I thought would be my last visit to Hotel Prentice on May 10th- was my 2nd to last visit. This posting is a compilation of what went on during round 6 and round seven.

Inspired by Run Lola Run.
Kasey and I looking real tough.
Kasey fully pouting.
Last bag of Rituxan!
Last bag or R-Epoch. Biggie looks intoxicated.  Patti on the other hand is just a rock star.

Shosh and Scott having too much fun.
The dream team- with lipstick!!!!
Bribery by Pizza
Does this party hat accentuate my baldness?
Dance videos:  You set the Play List
Northwestern Oncology Doctors and Researchers Twist Out Cancer at Their Spring Fling!
Floor 16 Angels- Apparently En Vogue is still in style.
Kasey Passen- You have no shame.

Ann, my head angel. She may not dance but she can lift 201.5 lbs. That's normal!

Erica Karp and her entire extended family celebrate- good times. 

Phoebe Strole and Penny: This takes the Twist to a Whole New Level.

Joel Maslaton, A Montreal Fighter, Badass, Cancer Crusher.

Daniela Antelo breaks it down- not only on the floor but on a coffee table. This girl has serious moves!

Fabiola and her familia perform the Venezuelan Twist!
Becca Gruenspan and the Athena Conference Twist Out Cancer for a 7 Time Survivor!

Saturday, May 21, 2011

Facing Death Twice.

On December 20, 2010, a phone call with my internist that ended with "you have Cancer" forced me for the first time to face my own mortality.

On May 20, 2011, 6 months and 6 rounds of chemotherapy later,  I received another call, this time from North Shore Hospital's Emergency Room Department, that would likewise force me to face death for a second time.

Earlier that morning, I woke up at 5:30 am, wiggled my toes, adjusted my shoulders, and started my ritualized deep breathing exercises that help me focus on the present moment and remind me that I am alive.  As I lay in my bed, smiling, I couldn't stop thinking about how excited I was to face the day, and more importantly to rejoin the world after living in isolation for 6 months. My immune system had clearly started to rebound, and I was getting ready to return to Northwestern Hospital for the last time to give blood and assess my levels.

I showered, returned to my bedroom and started to pack. Moments later I was overcome by shooting pains that originated in my abdomen and radiated down through the tips of my toes. The pain was so excruciating that I fell to the ground. I moved into fetal position hoping that this would provide momentary comfort. To no avail I couldn't get comfortable. I then tried to gradually stand up, only to realize that my situation was progressively worsening.

I screamed out to my parents, who quickly tried to figure out ways to ease my pain. As the pain increased, my voice noticeably quieted. We all came to the conclusion that not only was I unable to drive myself to Northwestern Hospital, but that my parents were not going to be able to get me there fast enough.

My father called an ambulance, and within minutes I was strapped to a gurney with tears streaming down my face. I have no idea what transpired from when I was laid out on a stretcher to when I was brought into the emergency room.  The only memory I have is that I realized the ambulance driver was the same police officer  that politely called my father during my high school graduation to tell him that I would need to be escorted home because they found a flask of alcohol taped to my leg.

Realizing the connection, I swallowed my pride, and quickly got back to concentrating on managing my pain.

Without knowing it, I had shown up for my final test.

What if's- off the charts.

I had no choice but to draw upon lessons gleaned from the last  six months in order to get through the next three days.

Once I was admitted to North Shore Hospital's ER, they hooked me up to Dilaudid which is a stronger derivative of morphine. This somewhat helped manage my pain, but by no means eradicated the abdominal cramping and burning.

After a CT scan, and blood and urine tests, the doctors diagnosed me with a mild Urinary Tract Infection which they believed I contracted while I was immunosuppressed after my final round of Chemoetherapy.  UTI's are very common, particularly with women during Chemotherapy. I was eventually sent me home with an anti-biotic, and told me to drink lots of fluids.

Upon returning home, I told my parents that I believed I had been misdiagnosed and that there was something more serious going on. 5 hours later, while I was on the phone with my dear friend Dr. Lindsay Freud, I received a call from Evanston Hospital stating that I had Gram Negative Bacteria Rods in my blood and that I needed to be urgently readmitted.  I asked if I could come back in the morning and they told me that minutes mattered.

In a panic, I called my oncologist and we both agreed that I should head back to Northwestern Hospital.  He told me that he believed I had enough time to head downtown but that I needed to be seen right away.

I spoke with Lindsay who similarly echoed the other doctors sentiments. In all three doctors voices, it was clear that this was serious- very serious.

I started to panic. I could feel my body physically tightening up and mentally shutting down. I was out of focus and moving in slow motion.  I walked over to the full length mirror in my bedroom, and stared deeply into my reflection. I no longer saw a victim, a patient, a shadow of my former self. Instead, I saw a warrior, a badass, a Cancer survivor who was unwilling to let another invader ravage my body.

As I stared deeper and deeper, I started talking to myself out-loud. " Jenna, you've got this.  You are going to Kill this in the Butt. You are going to knock the shit out of this bacteria and you are going to start now."

I turned to my Mom who was surprisingly very calm, and I said, "We've got this." She nodded and we quickly packed our bags.

I turned to my Dad, and held him for an extended period of time. Fighting back tears I looked at him, and hoped that this would not be the last time we would embrace.

Within 30 minutes we arrived at the hospital. After causing a great scene at intake, we were eventually escorted into an isolated room away from the other patients. I was quickly admitted and soon thereafter seen by a team of doctors.  I was hooked up to fluid, and started recieving intravenous anti-biotics which quickly attacked the bacteria in my blood.

The doctors at Northwestern believed that in addition to having bacteria in my blood, my port (affectionately known as my trip-nip or port authority) was infected. They decided to take more blood from different locations which they eventually cultured.

After 8 hours in the ER, I was admitted back to floor 16 at Hotel Prentice. I was greeted by Meghan, one of the nurses whom has affectionately become one of my lead dancers. It was 6:00 am and my Mom and I together watched the sunrise, desperately trying to take our minds off of the fear, the uncertainty, and the fact that we were back on the floor that we swore we would never return to.

We finally were able to sleep a few hours, and in that time, learned more about the invaders that had entered my blood stream, my urine, my body. After a chest x-ray, CT Scan, Ultra Sound, and more blood work and urine samples, my doctors all believe that I have a severe UTI that was contracted while I was immuno-suppressed. This bacteria moved from my urine into my blood and started to spread. My port, likewise was infected and needed to be surgically removed.

Yesterday, as I continued to receive anti-biotics intravenously, I had my port removed while I was awake. As they cut me open, and released me from this contaminate, I decided to sing Bridge Over Troubled Water on the top of my lungs. I couldn't stomach the sound of being cut open, so instead I embraced one of Paul's Simon's greatest hits, and sang as if it were my very last performance.

Today, I woke up with more abdominal pain, but with the knowledge that my infections are starting to clear up. I am told that I must stay here until my pain subsides, and there is no longer blood in my urine.

It has been an emotionally draining few days.
Over the past 36 hours :
I learned what it feels like to be so close to the finish line but unable to actually cross it.
I learned what it feels like to repeatedly fall down, and still continue to get back up.
I learned that I love and appreciate my parents in a way that I didn't think was possible.
I learned that there is a fine line between vulnerability and strength.
I learned that my desire to live is stronger than my pain.
I learned that my mind is stronger than my body.
I learned that just because I faced death once, doesn't make facing it for the second time any easier.
I learned that I need to slowly tiptoe back into the world.

Until then- I will give my body what it needs, and fight with every last strength.

Thursday, May 19, 2011

Cancer: A Key to the Mind, Spirit and Quintessential Self

After 6 months of writing and sharing my world with you, I decided that I was finally ready to reread all of my entries from start to finish.

Reading through each entry and extrapalating the lessons learned was not only therapeutic but it was necessary.

Here is my latest entry.  
This felt so good to write.

A dear friend from Montreal, Leslie Bishin wrote her latest blog entry about my fight. I suggest you check out her blog "Bishin Speaks"- she is remarkable.


Monday, May 16, 2011

Life at Zero

So here we are at zero.
0 neutrophils.
0 white blood count.
This is rock bottom.

There is no further down I can go.
The only option is up!

Here's to hitting rock bottom.
Here's to knowing what zero feels like.
Here's to never forgetting how I feel with no immunity.
And here's to rebuilding.
Join me.

Wednesday, May 11, 2011

From tied up to untied.

For the past 5 months and 3 weeks I have been tied up.
I have had central lines, blood lines, pic lines, and tubing enter through the top of my skin gracefully delving into the depths of my heart.

As the months, weeks, days, and hours wore on, the lines multiplied and the tubing continued to tighten.  With each tightening and forced constriction, the cells in my blood methodically, deliberately, and miraculously changed.

Only now do I fully understand and appreciate that it is the ties that bind us, that eventually sets us free.

From tied up to untied.
From shackled to released.
From Cancer ridden- to Cancer free.

Yesterday was the beginning of the rest of my life.

As I left Hotel Prentice for the last time, the thick, humid, Chicago air flooded my lungs, opened my heart, and cleared my mind.

I breathed deep- real deep.

Peering through my hypercolor goggles, I became enveloped by the sun's gentle touch and I found myself completely lost in the moment.  The world around me stopped, the noise quieted, and it was just me- standing there-completely untied.

As I enter into this new chapter, unsure of my footing, I intend to cling to my hypercolor spectacles, love wholeheartedly, embrace and celebrate vulnerability, and remember that life is always worth living.

Thank you for accompanying me on this journey.
I assure you, this is just the beginning.

Saturday, May 7, 2011

Let's Twist Out Cancer on August 11th, 2011

On August 1, 201, I ask that you join me on the dance floor to Twist Out Cancer. This will be an opportunity to celebrate what is really important, life, food, music and dance. 

On September 11th, 2011 I will be running in my first 1/2 marathon with the Leukemia and Lymphoma Society. I am hoping to raise $18,000 for the organization that is responsible for developing the drug Rituxan which has saved my life. I feel incredibly indebted to LLS, and look forward to doing my part to raise awareness and funding for an organization whose primary focus is to eradicate Blood Cancer.

To learn more about my campaign please go to http://pages.teamintraining.org/il/chichalf11/jbenns

Tickets include food, cheap drinks, live entertainment, a twist and hula hoop contest, and 3-D Twister. Proceeds of your donation will go directly to my fundraising campaign.

To purchase tickets online please go to the Hideout's Website 
Purchase Tickets

Special Thank you To Jesse Palter and the Alter Ego, Deanna Neil on the Ukulele, and DJ David Pelerin for making this night happen.

Surprise celebrity guests to be mentioned closer to the date.

Jesse Palter and the Alter Ego 

Deanna Neil on the Ukele

French DJ David Pelerin

I look forward to finally joining you on the dance floor!

***For Press and Media Inquiries please contact Jenna Benn at twistoutcancer@gmail.com

Thursday, May 5, 2011

Running in the Rain

So here we are on the eve of my last treatment.
5 1/2 months of pain, struggle, fear, anxiety, sadness, anger, calm, peace, love, and profound happiness.

Tonight I went to my first Team in Training Kick- Off event where I had the opportunity to learn more about the rigorous training involved for the 1/2 marathon, and a chance to meet other survivors, family, and friends of those touched by Blood Cancer.

I learned that I am the only participant registered who is still in treatment. This revelation made me feel like I was back in the third grade, receiving a gold star for acing my spelling test. I have always been an over-achiever, and I suppose training for a 1/2 marathon while enduring 800+ hours of chemotherapy is pretty reflective of who I am- and always have been.

I have been thinking a lot about who I was before Cancer and who I am now after Cancer. For months I feared that I would lose my voice, and that the disease would slowly strip me of who I am.  As I reflect on how I have fought Cancer, and assess where I currently stand, it is evident that Cancer did not simply take from me-she also awakened me. This awakening caused me to listen to and embrace my many selves, which when put together, embody my quintessential self.  I have never been more "me" than in this moment.

As I left the event, excited about the upcoming months, the sky opened up, and the rain came.

Tonight I ran in the rain.

Running in the rain is the first item on my list of Hopes and Dreams- a list I only imagined to be relevant after treatment.

Running in the rain was an unexpected gift.

As I finally returned home and got into the elevator, I shared a ride with a woman in my building. I turned to her and asked, "Did you get caught in the rain?" She replied, "No, but I am running upstairs to get my umbrella." She then turned to me and said, "Did you?"  I nodded and said proudly, "I got soaked."  She replied, "It's just rain, you'll live."

Yes, yes I will live.

My Story

It's one thing to write your story, it's another to say it.

Erin White- thank you for asking, thank you for listening, and thank you for capturing my story.

I hope that the telling and retelling of my story will eventually get easier.

Sunday, May 1, 2011

Let's Twist Out Cancer

The past two rounds I have challenged my readers to join me on the dance floor in the Twist and the Running Man. As I quickly approach round 6- it's time for a new challenge.

In round 4- I learned that the Twist is alive and well not only in North America, but around the world. From Romania, Dubai, Israel, and France, to NY, Chicago, Toronto, & Montreal- you all twisted!

The twist is timelesss. We dance it at bar and bat mitzvahs, weddings, and some of us even dance it at club's (although we may be ashamed to admit it).

The twist is easy, its straightforward, and it's impossible to mess up.  

That Chubby Checker was really on to something. 

As I head into the final round and start to close the patient chapter of my Cancer story, I ask that you all join me on the dance floor. 

If you are uncertain or feeling shy about joining- consider this:

in 2 men and 1 in 3 women will be diagnosed with Cancer.

15,000 people die every day from Cancer in the United States.

At some point in your lifetime you will be personally touched by this cruel, and indiscriminating disease.

For the Cancer warrior- every day, every moment, every breath is a challenge. This battle is undeniably personal, and inevitably isolating.

For family and friends, feelings of helplessness and uncertainty can be overwhelming. 

For the last 6 months I have battled Grey Zone Lymphoma. In order to hold on to my spirit while my body was repeatedly sacrificed, I chose to dance alone in my room- every day- no matter what. There were many days where I could barely move, other days where I could do the Twist, and a few days where I had the strength to do the running man. 

As I danced alone in my room, I wondered what it would be like to be joined by my family and friends on the dance floor. I visualized them dancing with me, moving with me, celebrating life with me.

I ask that you join me on the global digital dance floor to Twist Out Cancer.

I ask that you Twist for those that are fighting, have survived, and have been cruelly taken from us.

Starting April 30th, 2011 I challenge family, friends loved one's and perfect strangers to join me in a Twisting Out Cancer.

To join the dance party there are a few rules and regulations.

1. Select a song that is meaningful to you or the person you are Twisting for.
2. Dedicate your dance to a fighter, survivor or someone that has passed. Please briefly share their name and their story.
3. At some point during your song, you must dance the Twist. It can be your take on the Twist- but it must be the Twist.
4. Submit your video entry to twistoutcancer@gmail.com Please make note if you want your video to be public or private.

I encourage you to spread the word ! This is a wonderful way for you to connect with those that are fighting, celebrate those that have survived, and honor those that have passed.

I look forward to seeing you on the dance floor so together we can Twist Out Cancer.

Questions? See the video's below for instructions and a demonstration.



Still shy?
You still can show your support!!!
On September 11, 2011 I will be running in a 1/2 marathon with the Leukemia and Lymphoma Society.  My hope is to raise $18,000 for the organization that founded the drug Rituxan which is responsible for saving my life.I hope you will consider contributing to my fundraising campaign to fight Blood Cancers.
To learn more click on the link below.
Help Me Kill Cancer in the Butt One Mile at a Time