The Unveiling

Yesterday, at the Gay Pride Parade- Chicago got a taste of what it is like to see, breathe, and live in hypercolor.

This day, this parade, this experience, is the ultimate celebration of life. People from all over the world gather to celebrate diversity, difference, vulnerability, strength, and love.  It's a day where we embrace our alter egos which enables us to connect with our true selves.

As I have struggled to reemerge into the world, and become reacquainted with normalcy, I have also learned how to let my freak fly.

I have started to become more creative and perhaps bold with what I wear on my head, what I wrap this body in, and what I choose to present to the outside world.

Living in Boystown, a neighborhood that is predominantly Gay, has allowed me to feel a sense of "normalcy" during a period that is far from normal.  The more eccentric my appearance becomes, the more embraced and accepted I feel by the community around me.

Yesterday, as our float slowly made its way through the thousands of people gathered at the parade, Mel Malka, a fellow survivor and I twisted out Cancer.  We danced, jumped, and moved because we can, because we should, because we must.

3 weeks earlier, her and I were at a very different type of celebration. We were at the Lurie Cancer Center Survivors' Walk, wearing purple shirts, and celebrating our dance with Cancer. Yesterday, while wearing somewhat different attire, we continued to dance, to celebrate, to live loudly- because this is how we survive.

As we danced together and separately, I knew we both were thinking about how blessed, how lucky, how "blucked" we were to be there- together- in this sea of moments.

As the parade ended, and the overstimulation began to subside, I decided to take off my wig and publicly reveal my baldness for the first time. I no longer felt vulnerable or ashamed of what lies beneath- but rather felt ready to celebrate my difference, my journey, my alter ego, and my true self.  I felt ready to unveil my baldness- because those around me were so boldly embracing their own uniqueness.

I feel grateful to the brave souls that showed me how to celebrate and reveal what lies beneath. I will remember and cherish this day for the rest of my life.

Cancer Crusher and Expert Twister- Mel Malka

When What is Needed is Returned.

Two days ago I sprouted like a chia pet.  It was surreal really. My eyebrows came back with a vengeance, and I have a full set of budding eyelashes- short but lively.

Isn't it interesting that the hair that was the most resistant, that held on the longest, was the first to return?
Perhaps the counter-intuitive way my hair fell out, and is returning, is in fact symbolic of my Cancer experience.

Similar to my hair, what I felt I had momentarily lost in the unexpected round 7, is what returned first. My positivity, dignity, and even hope were temporarily tested and thankfully returned upon my release. I need positivity, dignity and hope- it is what got me through this fight. And perhaps the quick return of this dynamic trio has everything to do with those needs. While I may not "need" my eyebrows and eyelashes, their return makes me feel "normal", a feeling I am only recently starting to become reacquainted with, and welcome with open arms.  And in some ways I think we all "need" to feel "normal"- even if it's only for a moment.

As I wait patiently for the return of what was lost, I am learning that I have a deep appreciation of what was taken. This new level of gratitude is perhaps only understood and felt by those of us who know it is like to be robbed of parts of ourselves. As the pieces are slowly returned, I am learning how to put myself together again, and I am learning to be ok with the fact that this version looks slightly different than the earlier model.

Now that some of my needs have been returned, and I am no longer in fight mode, I am trying to figure out what it means to live in the moment.  Does living in the moment mean temporarily forgetting my past in order to be fully present in the here and now? Or rather- does honoring my past allow me to more fully live in the moment?

There are times when all I want to do is forget about Cancer, forget about the last 7 months, forget about what it felt like to be on pause and not on play. And then I think about how it was this experience that has brought me to this moment. In order to fully appreciate today, we have to honor yesterday. We have to consider what has brought us to the here and now. By owning and embracing our pasts, we are more able to embrace the present. My dance with Cancer, has allowed me to more fully appreciate today, tomorrow, and the bright days that will follow thereafter.

Two days ago I received another clean Ct scan. My fight over the last seven months is ultimately what allowed me to fully appreciate this news, this moment, this life.

So Cancer, while I may at times try to forget you, divorce myself from you, and push you into the background- I also thank you.

Embracing Uncertainty: Dance with Me.

Here's to crossing finish lines.
Here's to moving our bodies.
Here's to embracing uncertainty.

This is hardcore.

And I'm indestructible....
Join me.

Flip Flops Found?

This is beautiful.
Rachel and Laura- you are little angels. This brought me to tears.

Dear Jenna,

While reading your blog we realized we might have found your pink shiny flip flops!  They were never lost; they were in our shop the whole time.  We thought they were a “return”, but then we saw the sand, brushed it off, and realized the soles were worn and must have traveled many places.  So we decided to hold them and take good care of them. We knew that someday the rightful owner would come looking for them. Just as you said, “they are the most beautiful pair you had ever seen, and very recognizable.” Anytime you would like to claim them, let us know and we will send them to you free of charge.

P.S. Your  flip flops still have that same “sparkle” you describe in your blog and they will be always there for you to wear in case you can’t find your Reebok High Tops. So you’ll have 2 pairs—one to wear and one a spare!

Sincerely,

Rachel and Laura

Cottage Flip Flops

Cottage Flip Flops on Etsy

On June 20th, 2011 Rachel and Laura sent me the flip flops I left behind in the sand 7 months ago. These shoes are without a doubt more sparkly, bedazzled, and vibrant than how I remembered them.  Thank you for doing this- it means so much to me.

To check out the one of a kind Twist Out Cancer flip flops go to Twist out Cancer Flip Flops on Etsy

Dear Nonsense- I Missed You.

Last night I gathered up the courage to go on a date.
It wasn't my first date-but maybe my third or fourth.

Dating before Cancer was tough.
Dating after Cancer is a whole new obstacle course.
I'm new at this- really new at this.

Can someone pass me the rule book?

At what point do you share that you had Cancer?
At what point do you admit your bald?
At what point do you admit you could have died?

Is this 1st, 2nd or 3rd date talk?

What about those that already know? If you google me- you will see me bald, put the pieces together -and realize that I used to be sick.
Anonymity isn't really an option- and I am ok with that.
I have been front and center about my disease from the beginning, and I believe it has given me a tremendous amount of strength in the process. I don't regret for a heartbeat that I have been open and honest about my hopes and dreams, fears and frustrations- it's who I am.

But- getting ready for a date is different. Sure I stress ( briefly) about what to wear, where to go, what to do- but what is the main focus of my anxiety- is my wig.

Is he going to be "weirded out" by what is on the top of my head? Can he see past this $20 banging number or is he hung up on the color, the length, and the fact that its fake?

Cancer survivors don't choose to get Cancer, and we certainly don't choose to go bald. But this is our lot- and we must deal with it.

If I don't wear a wig, and choose to go bald- will I scare my date?  Baldness for many represents sickness, weakness, and defeat- as opposed to victory, strength, and resilience. The way I view my baldness today is still constantly changing and evolving.

So where do I fit and how do I navigate this new world of dating?

Last night, my date couldn't get past what was on my head, and failed to see what was in my heart. I was admittedly upset about it- but here is the great thing about Cancer- it leaves you with no room for bullshit.  Before Cancer I would have gotten upset about the disparaging comment and replayed the scenario over and over in my head. Now, I realize that the comment was not only insensitive but it's just nonsense.

Stressing about dating, as opposed to death, is what a 29 year old single girl should be worrying about.
So here's to nonsense, here's to bullshit, here's to life- I missed you.

Searching For My Flip Flops

As my body and mind continue to heal, and I slowly get stronger, I find myself searching- searching for the flip flops that I abruptly left behind in the sand nearly 7 months ago when I was diagnosed with Cancer.

My shiny, pink, glittery flip flops are now buried deep- nowhere to be found. As the days continue to pass-they sink deeper. The sand is eroding their sparkle, and I fear that they may actually be unrecognizable if I were to actually find them.

Over the last two weeks as my side effects have subsided and I have reentered the world, I admittedly have caught myself desperately trying to find my shoes so that I could immediately fill them. When I catch myself  searching- I inevitably experience a sense of loss and sadness.

I can't go back to the path I abruptly left on December 20, 2010. 
I can't go back to the person I used to be.
I can't go back to the life I used to lead.

And this is all ok.

I am not saying its not hard- it's really hard- but it is also a tremendous opportunity.

I now have the ability to pick out a new pair of shoes, find a new path, and figure out the life that I want to lead.

I replaced my pink glitter glam flip flops, with gold Reebok high tops from the 80's.
I am no longer slowly walking down the path, but I am twisting.
And I am living today- moment to moment, breath to breath, heartbeat to heartbeat.

I wake up every morning from the excitement of being alive. I look at each day as an opportunity to transform and grow. The world around me is glowing.

As Cancer starts to move from center stage into the chorus, and as the new and improved Jenna starts to emerge, I look forward to embracing the days ahead- because they are gifts.

Yoga for a Cause- Join us Friday June 24th for a Beautiful Evening of Yoga, Relaxation and Meditation

On Friday June 24th, my dear friend,  mentor, and Yoga teacher Becky Strauss will be holding a Yoga class where all proceeds raised will benefit the Leukemia and Lymphoma Society.

The flyer is below.

YOGA for a cause …   

…a yoga benefit supporting the Leukemia and Lymphoma Society (LLS)

**********************************************************

In December 2010, my friend Jenna Benn, a 29 year old Chicagoan was diagnosed with Grey Zone Lymphoma.  After 6 months of chemotherapy and her own style of fighting cancer, Jenna is in remission and has put her life back on play.  She is a budding yogi who is training for the upcoming Chicago ½ Marathon in September 2011.  As a member of the LLS Team in Training Jenna hopes to raise $18,000 for the LLS fight against Blood Cancers.  Please join me in a mindful yoga practice, an opportunity to provide $upport to the LLS cause, and honor Jenna and the cancer crushing warriors you have known in your life who are survivors or still fighting for a cure.

This is a “yoga for the people” event so every one, every age, every size, every outfit, every ability, every donation is welcome!  Thanks and hope to see you.

Becky Strauss, RYT

When:           Friday, June 24, 7:30-9:00 PM

Where:         The Chicago Yoga Center                         

3047 N. Lincoln Avenue, Unit 320, Chicago, IL, 60657                           

RSVP:             Visit our Event Page on Facebook, “YOGA for a cause”

Suggested donation:  $20/person but any donation is welcome!  Cash or check only.  All proceeds go to the Leukemia and Lymphoma Society.

You can read more about Jenna and her efforts to support the fight against Lymphoma http://pages.teamintraining.org/il/chichalf11/jbenns

 *For more information on The Chicago Yoga Center, please visit their website at http://www.yogamind.com

**********************************************************

I hope you will join us-all are welcome! Together we have the ability to inspire and one day find a cure!
Please email me at bojo419@gmail.com if you plan to attend.

Blucked.

Here we are 16 days after the unexpected round 7.
A lot has happened.

I moved.
I hosted a housewarming party for some of my closest friends.
I shared my story for the first time at Grant Park and led 4,000 survivors in the Twist.
I returned to work full time.
I got back in the boxing ring.
I ate sushi for the first time last night after a 7 month hiatus.
I ran 7.5 miles today after not being able to run for a month from extreme pain in my abdomen which has now subsided.
I no longer have a bacterial infection in my urine.
My immune system has rebounded.
I slept 8 hours last night for the first time in 7 months.
I have stubble growing on my head.
I found a few budding eyelashes and eyebrows.
I discovered new muscles in my arms.
I reclaimed my taste buds, but realized the the hard way that I still need to avoid spicy foods.
I continue to see the world in hyper color.

Life after Chemotherapy is good- really good- almost too good.

I feel incredibly blessed and incredibly lucky.

Actually-scratch that. Both of these words don't fully capture what I am feeling.

Is it that I am really blessed and really lucky, or is it something else?
I actually think the word I am searching for is somewhere in between.

Let's call it bluck.
I am blucked.

I have been thinking a lot about gratitude.
I feel an overwhelming sense of gratitude that I am able to see the world in hypercolor, that I was able to survive Cancer, that I was able to survive Gram Negative Rods, and that I am here today- living, breathing and dancing in a way that I never thought was possible.

I feel like I have a serious crush on life right now.

I am savoring every taste, every smell, every breath- and I feel lucky, I feel blessed, I feel blucked that I am able to live like this.

I no longer am living in the shadows- but have tiptoed into the sunshine. I can't say I am fully integrated into the real world, but I am making my way- slowly.

Come find me.

The Next Chapter: Magic

In the last 29 years, there have been a handful of occasions where I have felt fully present, fully alive, fully in the moment.
Yesterday was one of those occasions.
It is impossible to describe the magic that occurred yesterday at the 18th annual Lurie Cancer Survivor's Walk. Instead I will try to show you.

This post is going to be a work in progress. Over the next few days it will continue to grow, so be sure to check back here for further developments.

ABC 7 Segment: Twisting Out Cancer and Celebrating National Cancer Survivors Day!

My Speech

It feels so good to be here.

I am going to do my best to hold it together, but I make no guarantees, since I am fresh off of chemo, I am hypersensitive, I am emotional, and this is the most magical day of my life.

It is nothing short of miraculous that I have the opportunity to stand before you to share my story, to open my heart, and to let you into my world. Northwestern- thank you for the opportunity, I am forever grateful.

First, let’s a take a look around. Have you ever seen a more beautiful crowd? 

To my cancer crushing warriors, adorned in purple, we know what its like to go to war, to fight with every last strength, and to face our greatest fears. I am honored to stand with you, and I am overwhelmed by your strength and your courage. My heart goes out to you.

To our family, friends, and loved ones, who have lifted us up, held our hands, wiped away our tears, and have served as our cheerleaders throughout our fight- we couldn’t be here without you.

And to the Lurie Cancer Center’s remarkable staff, you are angels who work tirelessly to help us survive, to make us comfortable during our darkest moments, and to give us hope that tomorrow will be better than today.

 My Name is Jenna Benn, I am 29 years old and I am a proud survivor of Grey Zone Lymphoma.

Grey Zone Lymphoma, is a rare blood disorder that affects less than 500 people in the United States.

This Cancer that has features of both Hodgkins and Non-Hodgkins Lymphoma.

In December 2010, after months of fatigue, weight loss, flu like symptoms and night sweats, I knew in my gut that there was something very wrong. I went to the gym, thought I had lifted a weight improperly, and quickly went to my orthopedist to be checked out.  ….A couple hours later over dinner at my favorite childhood restaurant, I was told that I had cancer. They had found a large mass in my chest.

For those of us that have heard the three words, “You Have Cancer”, we know what its like for time to stand still, and for our lives to be profoundly changed in just one moment.

That night, I decided, that I was going to fight this disease with the tenacity in which I wanted to live. 

I was determined to kill cancer in the butt. There was no other option. Later that evening I started a blog called Kill it in the Butt, which became a space where I could process my thoughts and feelings, communicate with family and friends, and connect with all types of survivors- not just Cancer survivors.

While waiting for results from a biopsy,  I was desperately looking to regain some type of control. During my wait, I scheduled an appointment with Northwestern’s Oncofertility Consortium to explore my fertility options. While I knew that Cancer was going to rob me of many things, I was unwilling to accept that it could also rob me of having children. I want to be a mother. I want to have children. By exploring fertility treatments, I was able to think about life after Cancer, which not only gave me hope but it helped fuel my fight.

On January 21^st, I began an aggressive non- Hodgkin’s regimen called R- Epoch, requiring a 5 day in-patient stay every 21 days, for six rounds.

On May 10^th, after multiple surgeries, scans, 4 blood transfusions, and over 720 hours of chemotherapy, I completed my 6^th and final round.

10 days later, as my immune system began to rebound, I was eager to reenter the world and return to work for good.  On May 20^th, 6 months to the date from my initial diagnosis, I came down with mind numbing pain that started in my abdomen and radiated down to my toes. I was told that I had contracted Gram Negative Rods, a potentially fatal bacterial infection, where minutes mattered.  I urgently returned to Northwestern Hospital, the institution that I trust with my life.

There I was again, at what I refer to affectionately as “hotel Prentice”, on the 16^th floor- on the floor I swore I would never return to. Thankfully, I was once again surrounded by my medical team . These miracle workers were again at my bedside, this time working on overdrive. 

Fighting against the clock and fighting for my life, I remained at Prentice for another 5 days. I left on May 23^rd, for what I sincerely hope will be the last time.

  It has been an emotional journey.

 While I willingly accepted the fact that cancer would cause unavoidable physical changes, I was unwilling to allow the disease to rob me of my voice. For the past sixth months, when I could not talk, I was communicating. There were moments when I was quiet, but I was really screaming. As I desperately tried to find my voice and struggled to be heard, I realized that I needed to embrace Cancer in order to beat her.

 I learned that is impossible to beat cancer without holding on to hope.

I learned that in order to overcome this disease I had to use all of my past experiences, all of my triumphs and disappointments, as ammunition in my fight.

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 family and friends 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.

 Throughout this journey I had to figure out creative ways to hold on to my spirit I held on to my spirit through writing, through singing on the top of my lungs, and through dancing every day alone in my room. In my blog, I opened up and wrote about my deepest fears, hopes and dreams; yet still found myself disconnected from the world around me. I felt that while I was on pause, everyone else was on play.

 So I decided to change the rules. I chose to twist my way through cancer.   During the days when I was immuno-suppressed and I couldn't be out in public, I admittedly was feeling incredibly lonely.  I decided to post a video of myself doing the twist alone in my room, and challenged my readers to meet me halfway. I asked them to send videos of themselves so they could join me on the dance floor. Sure enough, they videotaped themselves, welcomed me into their homes and offices, and joined me.

As we twisted, I was able to tiptoe out of the shadows, reconnect with my body, and eventually reclaim my spirit.

Today, I hope you will join me in twisting out Cancer. I hope you won’t leave me hanging all alone on the dance floor.

I hope you will twist with me, because together, we have the power, to inspire, to provide hope, and to one day find a cure.

 Thank you.

Lurie Cancer Center Footage :What Twisting Out Cancer Looks Like