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.

Round Five- The Running Man- Can't Touch This!

Last week, with 480 hours of poison running through my body, I was unable to do the running man- but I was able to do the twist. As of yesterday, my body has recovered-right as I prepare to head back in for round 5.

Yesterday I was given the tremendous news that I had a clean CT scan of my chest, abdomen, pelvis, and an uneventful Echo.  This essentially means I am still in remission- where I intend and hope to stay for the rest of my life.

I hope you will join me on the dance floor to celebrate. Thank you to the brave souls that have already decided to join the dance party. I am forever grateful to you.

Yours Truly

Justin Beitler does the "Jenna Benn" dance- a twist on the twist. 
This is nothing short of remarkable.
http://youtu.be/qDm7r9rfy1s

Jesse Palter and Bryan Abrams - Nail Hammer's Choreography!

My Beautiful Friend Marianna, Runs to beat Cancer from Beautiful Dubai.  There may be no sound- but she runs perfectly.

Jesse Palter and Team in Training Use the Running Man to motivate for their long Run today.  They are Killing it in the Butt one mile at a time.



To My Passover Seder Sisters, Also Known as My Miracle Workers who made this past holiday incredibly memorable. Their running man skills are off the hook!

It Takes an Army, a Cheerleading Squad, A Dance Troupe -To Fight Cancer

This past week, I have refrained from writing because I wanted to temporarily shut off my world in order to fully enter yours.  So many of you have bravely let me into your homes, into your bedrooms, into your work places in order to support my fight.

For the past 5 months I have intentionally invited you to participate in my battle.  In the process you have become my fierce army of warriors, my jubilant cheerleading squad, and my talented company of dancers.

I chosen to have you fight, cheer, and dance beside me, because Cancer is too difficult to fight alone.  I have opened myself up to you because I want you here- and because I need you here.

Yesterday-
I ran six miles for six rounds of chemo-because of you.
I danced alone in my room- because of you.
I sang on the top of my lungs- because of you.
I received clean scans and continue to be in remission-because of you.
I am fighting and beating Cancer- because of you.

Your fever pitch screams, cheers, and twists- profoundly affects my mind- which affects my spirit-which affects my blood- which is my world- which is my life.

You are the fuel for my fight and are going to get me through the next two rounds and the last PET Scan. You will also have a critical role when I transition from fighting to healing, and when I transform from patient to full-time survivor.

I am forever grateful to my army of warriors, jubilant cheerleaders and talented dancers for carrying me on your shoulders each day, and lifting me up.

As I prepare to sacrifice my body for round 5- my mind is stronger than ever, my spirit is soaring, and I have you to thank.

So thank you.

It's There In My Blood.

The first three rounds of Chemo were child's play compared to round 4.

My body has still not really bounced back. I tire easily, sleep terribly, and I have a permanent sore throat- because Cancer/Chemo likes to take the good cells in your mouth too.

This morning I found a few eyelashes in my cereal bowl- that was humbling.

My eyebrows have thinned, I have lost more weight, and my muscles are looking pretty small these days.

My port is now more prominent, there is virtually no hair on my body, and my skin has lost a lot of its pigment.

Cancer/Chemo continues to throw her nasty punches, and this round she crept up on me, surprised me, and tried to knock me down.

She failed.

The reason why she failed is because I am using the power of my mind to desperately hold on to my spirit.

My body may be beaten up, worn down, and repeatedly sacrificed throughout this fight, but my mind continues to remain strong and as a result, my spirit continues to soar.

In my last entry I wrote about how my world, and my life revolves around my blood.  What I didn't realize is that the way I have chosen to fight and continue to fight Cancer, is also there in my blood.
B Positive.

I have chosen to use positivity to Kill Cancer in the Butt.

Throughout my fight I have not lost hope. I have had many dark moments, have been overcome by fear, and crippled by what if's- but at the end of the day, I am inherently hopeful, I am biologically positive- it's there in my blood.

I am able to remain hopeful because of my strong will to live, and my mind's remarkable ability to lift my spirit.

I dance alone in my room to fight Cancer.
I sing at the top of my lungs to fight Cancer.
I write to you to fight Cancer.

Through dance, through song, through writing I am able to awaken my spirit, and hold on to who I am at the very core.

While my body may be weakening, these acts are strengthening the most important part of me that lies beneath the skin.

This week many of you joined me on the dance floor. You twisted your way into my world, and gave me a glimpse into yours.  In doing so you graciously reminded me that I am not alone in this fight, and that I am not alone on the dance floor.  In joining me, you strengthened my mind, lifted my spirit, and gave me tremendous ammunition for yet another round.

As my body continues to become more fragile, I will continue to dance, to sing, and to write because it is helping me to stay positive, which is in my blood, which is my world, which is my life.

.

To My Dance Partners

The Goggle-Licious Kasey Passen

http://www.youtube.com/watch?v=6c3dF2F_ILA

The Uber-Talented Jesse Palter, Who Will Be Famous Very Soon

Jesse Palter Twists and Simultaneously Straightens Her Hair- A Rare Talent

Dan Hadad Who takes Doggy Style to a Whole New Level

http://www.youtube.com/watch?v=K9uX3A9EiAk

Stephanie Finklestein and her Father- a Hodgkins Lymphoma Survivor Tear up the Dance Floor

http://www.youtube.com/watch?v=Y5gWcowfDq4&feature=share

My Co-Workers at an African American- Jewish Seder

http://gallery.me.com/bobandsonya#100026/MVI_0172

The Lovely Londoner that Giggles Her Way Through the Twist

Lisette Twists Her Way Out Of Work

Next Generation Chicago Post Conference Call

From the Always Fab Aaron Kotz

Chloe and Lionel Showing off the French Twist.

Pedro y Margarita- Twisting from Beautiful Buenos Aires



Deanna Neil Twists Out Cancer Ferris Bueller Style.

80 People, 9 Different Countries, Twisting out Cancer in Romania! Thank you Dana Vereanu for putting this together.


http://www.youtube.com/watch?v=pQg5fYCPets


To those of you still interested in joining me on the dance floor- I am  happy to have you.
To those of you that posted videos via Facebook and want to join in here- just email me your video.
And for those of you that preferred to dance privately- you all are such gifts.

Doing the twist, but not the running man.

I am not going to sugar-coat this. Round 4 has not been pretty. She started out easy but I was mislead.

 I left the hospital last week feeling a sense of calm and optimism that was indescribable. My typical side effects were minimized, my spirit was in a good place, and I got back on the dance floor.

Things made a turn for the worse on Saturday. I could barely get out of bed without becoming exhausted. I came close to passing out in the shower and then later in the afternoon saw stars while on a three block walk. I had to be driven home by our family friend.

This body of mine was unrecognizable.
Last week I biked 18 miles while on Chemo, and ran 26 the week before.
On Saturday, three blocks, a flight of stairs, and regular self-care was wearing me out.

So what gives?

On Monday my immune system was at an all time low.

.8 WBC
2.76 RBC
8.6  Hemoglobin
.3 Neutraphils

For those of you not in the medical community- this is bad- real bad. I was anemic, neutrapenic, and had no ability to fight off infection. I needed fluids and blood fast.

I wrote my previous blog entry from the first waiting room where I  had my regular blood draw to assess my levels.  I was in a great mood and feeling inspired by those around me. An hour later, I was in another waiting room, but I was no longer kind and generous- I was a hysterical raging bitch.

Cancer/Chemo has a miraculous way of transforming you- I mean this literally and figuratively.

The woman at the front desk didn't realize that I was still waiting to be crossed and checked for blood because I was wearing a mask. She figured I had already been helped.  After 90 minutes of waiting for no reason, I started to lose it.  All of a sudden it became unbearable to sit in that waiting room any longer. My flu like symptoms were intensifying and fear was sinking in. I sat in my chair next to my mom, crying like a baby.

I then realized I was letting fear take hold of me, and I needed to mentally fight back.  I started my deep breathing exercises, inhale for five, exhale for five. I did this for a few minutes and noticed myself calming down.

A few moments later I  was whisked into the back room, placed in a reclining chair, and again- giving blood.

My world revolves around blood.  My life depends on blood. My spirit is connected to my blood.

After my donation, the nurse tried to escort me back into the waiting room for what she said could be a few hours.

A few hours? I have no immune system.  She was knowingly putting me into a war-zone.

In between tears and hiccups, I looked her deep in the eyes and say  "No".

"I refuse to get out of this chair and go back there. I refuse to be put at risk because your staff has messed up. I will not sit in that chair and just wait to get worse. I am not moving- you are going to have to figure this out. And if that means admitting me to the ER than so be it. I refuse to move."

Hello GI Jane.

I am not sure where the strength came from to advocate for myself in that state of mind, but I was fierce. I was also desperate.

Sure enough, they made arrangements for me to stay and 6 hours later I had an anonymous donor's b negative blood which was a match for my b positive.

So today, I am back on the dance floor- sort of.  I am doing more of the twist than the running man, and that is ok.  I am learning to be patient, I am starting to get creative, and I am learning how to push back.

I am still not feeling great, but I am feeling really empowered. While chemo continues to try to rob me of my voice, the past few days I have been screaming at a fever pitch.

Can you hear me?

And if so- will you join me on the dance floor?

Cancer- A Passport to the Mind

I write to you today from the Lurie Cancer Center waiting room.
Its packed.  It's always packed.

One could deduce that there are not enough seats in the waiting room because Northwestern Hospital is a leading Cancer Research Center, where people travel from around the world to be treated by the best and brightest.  Or one could argue that there are simply too many of us fighting this disease.

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

How can we possibly digest this statistic?

The reality is Cancer will touch you in your lifetime. Whether it's a friend, family member, or G-d forbid your own personal battle, no one is free from her vicious grip.

If you are reading this and following my journey, then you are already touched by the disease.  You already are apart of these mind- numbing statistics.

So who are the people behind these statistics? Who waits here with me?

To my left, there is an elderly gentleman, dressed in what could be his Sunday best. When he arrived with his mother who was attached to a ventilator, there was only a seat for her but not for him.  At first I was unsure if he was a patient, and then I noticed he was holding a purple pager- also known as the VIP membership card to the Cancer Club.  I immediately got up and pulled in a chair from the neighboring treatment room so he could sit right beside me.  Once he got settled, he turned to me, showcasing a grin from ear to ear, staring me deep in the eyes, and gleefully exclaimed " I feel so blessed. Everyone is so nice to me!"

I wanted to reply, " It is I that feels blessed to have shared this moment with you".  But instead I said, "It is really my pleasure."

This small act of kindness created a domino effect.

Moments later, the man to my right-middle aged, thin, and noticeably shy- grabbed 2 Vogue magazines and quietly approach me.  "Miss, may I suggest you put this underneath your laptop. The battery can cause damage to your legs- and you and I both wouldn't want this".  I paused, smiled at him, and thanked him for looking out for my best interests.  I then wondered, could his gesture have been driven by my earlier act of kindness, or perhaps was he motivated by his own personal experience? What was his story? Why was he here? What had he endured? We both stared at each other smiling, - mutually happy that we were able to make a lasting impression on one another.

One act of kindness led to another and then another.   Soon enough the warriors in the waiting room really started to look out for each other.  We were welcoming new members as they arrived, we started engaging with each other, and slowly the dry wall that existed between us was breaking down.

I feel an unusual rapport with those that wait here with me. Not only is there an unspeakable bond that exists between us because we all are surviving Cancer - but we are connected because we have traveled to the mind's darkest and most brightest of places. Cancer has this miraculous ability to give it's fighters a passport to the mind-where desirable destinations include savoring small interactions, gestures, and acts of kindness.  This passport also allows family, friends and strangers to engage in unusual levels of intimacy and access the fighter's most extraordinary strengths and insecurities.  These small trips that I make while carrying this passport are not only gifts but profound blessings.