Monday, February 28, 2011

Living in the Shadows

After a terrible bout with the stomach flu, my body did eventually recover and came back stronger than before. 2 days after receiving fluids at the hospital, I found my energy and strength returned, my mind was clear, and I felt ready to reenter society.

Every time I reemerge I have to mentally prepare myself for a unique set of challenges. What people may not understand is that Chemotherapy intentionally destroys your immune system- day by day, moment by moment, cell by cell, in order to rebuild it into a healthy one that will hopefully sustain me for a long a beautiful life.

Before Cancer, my immune system, served as my armor to protect me from disease and infection.  Now it is inherently broken- leaving me feeling naked, vulnerable, exposed.

The armor that I have to protect myself now comes from a magic shot called nuelasta which takes accesses my bone marrow in order to replenish my cells. This shot is what helps to rebuild my immune system after I have nadered ( or dropped) which occurs around day ten.
While Neulasta is without a doubt an incredible weapon, my real armor is created and built in my mind. 

Since the stomach flu I have talked to a number of other Hodgkins and Non-Hodgkins survivors  about the precautionary measures they took in order to help prevent infection. The level of precautions taken varied significantly from  person to person.  Most that I spoke to quit work, stopped exercising, and decided to hole up in their childhood homes until they were out of hell.

This approach may be the best for certain people, but for me, I know this type of existence would permanently damage my soul.

I cannot become a recluse, where my existence lies between the hospital and the home. I am not being told to stay at home by my doctors, but when my levels are low I have to take serious precautions. When my levels are ok, the owness is on me to decide what I am comfortable exposing myself to and what precautionary measures I want to integrate. 

Every time I leave the house I enter a war zone.  On some days my body can potentially handle the confrontation with other diseases, and on other days it can't.

How do I avoid and protect myself from diseases I can't actually see?

I have decided that during this time where my health is my number one priority I have to accept that I am going to live in the shadows.  There will be moments where I step out into the sunshine, bask in it and then return into the darkness- but that is ok, and it makes those moments in the sun all the more sweet.

I have integrated a number of suggestions that my doctors and fellow survivors have impressed upon me.

1.  I wear a mask in public places when my levels are low.
2. I always wear a mask at concerts, movie theaters, and other large public spaces.
3.  I always wear a mask and gloves in cabs, and I don't use public transportation.
4.  I opt for the early bird special at restaurants so I can avoid crowds.
5.  I run like hell if I hear someone coughing.
6.  I wash my hands all the time- really all the time. 
7.  I avoid small children that have not had their shots.
8.  I don't eat at salad bars or share food.
9.  Every time I leave the house I have to think hard if the benefit outweighs the cost.

So this is my life if a bubble. I realize it is a temporary bubble, and it is a bubble that very well may become too claustrophobic or too large at times, requiring me to make serious adjustments. 

At the end of the day, I need to protect myself and participate in life, in a way that I feel comfortable.   For the first time in my life, I am driving the bus and calling the shots, and I realize that this role can be hard for those closest to me.  

For those closest to me, I realize it is painful to see me in a mask and gloves. I realize it is hard to see me bald and malnourished. I also know that is is hard to watch me live in the shadows when in my life before cancer, I was dancing in the sunlight.

This existence is temporary. I am investing in my health right now, so I can protect myself, fight with the power that lies within me, and live a long life that will be profoundly changed but greatly enhanced because of this experience.

Until then- here's to seeing you all in the darkness or in the sunlight.

Monday, February 21, 2011

Can a Girl Catch a Break?

It's day 10 of recovery and I haven't recovered.
What happened to this round being easier?
Apparently the joke is on me.

Somewhere between Friday and Saturday my body decided to pick up the stomach flu or a GI infection, and I have been in hiding ever since.

After 2 full days of running back and forth to the bathroom, dealing with the shakes, and spiking a fever, I officially became dehydrated. I went in this morning to 21 for some magic fluids.  Here I was on my day off, back at the hospital with an IV, hoping to be brought back to life.

I wish I could say it worked.
I am still struggling today. I feel run down, worn out, beat up.

Can a girl catch a break?

I was so close to recovery- I could taste it. A few days ago when I reclaimed my body and got rid of the 600 pound lady that likes to sink into the bed, I felt the sweetness of healing- only to be knocked down again.

And so it begins- the daunting process of learning how to pick myself up after being repeatedly knocked down.

This is without a doubt the greatest physical and mental challenge I have ever been faced with.

I certainly have overcome challenges in the past, but none as nasty, as overwhelming, as vicious as Cancer.

When I think about the trials and tribulations I have experienced in my past ( and there have been certainly some monumental ones)- I learned how to sit with my pain, reflect on it, forgive myself, and allow myself the time to heal.

I am learning that I need to start giving myself more credit in this process as opposed to focusing on the let downs.

So here is where I am going to pat myself on the back and reflect upon what I have achieved so far.

I have been fighting Cancer and living with Cancer since December 20, 2010.
I have endured 2 rounds of continuous chemo totaling more than 216 hours.
I have stayed in the hospital for 11 days.
I had an unexpected visit to the ER post biopsy for an an ulcer in my throat - of which I was not allowed to take meds for but eventually healed.
I had an Ear Nose and Throat specialist put weird tubing down my nose to check for permanent damage to my vocal chords.
I have endured 3 surgeries- one of which I was awake for.
I went through the ever dreaded bone marrow sample- and came out saying "that wasn't so bad".
I have had a Pet scan, 2 chest x-rays, an MRI, and a Brain CT.
I went through a month of fertility treatment, injected myself with shots four times a day, underwent surgery and harvested eggs so that I can bring life into this world.
I had a deep conversation about foliage with a green skinned purple haired lady while on Marinol- and eventually came out of it.
I have a central line that looks like a third nipple permanently lodged into my chest. I will set off security alarms.
I watched 6 patients die during Round One.
I bike 10-16 miles almost daily while on chemo and work out 3 -4 days a week when off chemo.
I meditate every day.
I pray every day.
I tell those that are closest to me that I love them every day.

I am not trying to show off- that is not my intention. By jotting this down, I am realizing that I have overcome so much already - so really how big of a deal is the stomach flu in the grand scheme of things?

I need to take a deep breath, remind myself  that my body knows how to heal, trust that it will bounce back, and acknowledge that I am already a badass.  I am not a quitter, and I plan to pick myself up, and continue to take this bitch down with everything I have.

I love my life to much to fight any other way.

Sunday, February 20, 2011

My New Relationship with Food

Dear Cancer:
You are playing really dirty this round. You decided to take taste too?
Ugh I hate you.
-Jenna aka Canzer Crusher Warrior who intends on smashing your face in during next round.

Ok that was aggressive- but I am pissed. My taste's are changing- as is my relationship with food.  What I have noticed is that when I am in the post- chemo recovery phase I have the taste buds of a five year old. All I want to eat is chocolate milkshakes, grilled cheese, and egg salad sandwiches. If you were to ask me the last time I had any of these foods, I would politely tell you- 20+ years ago.

For my entire life eating healthy has been a value my parents instilled in us in a young age, and one that I adhere to somewhat religiously. My parents rarely kept junk food around and they cooked healthy meals regularly. My mom was using jicama in her salads before I could even spell the word. She cooked with thought, with creativity, and with love. She follows heart healthy recipe's as if it were a bible, and she marks all of her favorites with superlatives like  "Superb!", "Outstanding", "Calls for too much salt!"

I grew up in a home where cooking and food is not only appreciated but celebrated.

Growing up in a home that celebrates healthy eating, impacted my relationship with food as a teenager and now as an adult. I never deprived myself of eating certain foods, but overall I understood the value in being healthy.  As an adult, my metabolism slowed, and the creme brule, kosher smoked meat sandwiches,and poutine from my favorite spots in Montreal, hung around on my frame for a little longer.
So I adjusted my exercise level, reduced the frequency in indulging, but never- never eliminated my favorite foods from my diet.

Unfortunately these days, my favorite things, are no longer my favorite things.

My tastes are changing rapidly and foods that normally rocked my world, are appearing somewhat dull. I am no longer turned on by complex sauces, unusual spices, and atypical parings. My palette has regressed and is incredibly temperamental.

During the days of recovery when your tummy is in a state of turmoil, eating is the last thing you want to do. I sometimes picture my belly as an open pit of flames that becomes intensified by adding anything to it. Being able to digest food during the days out of the hospital is a real challenge, but by eliminating food from the equation I am incredibly weak and unable to heal in the way that I need to. Essentially I can't win.

Food has become no longer about taste but about fuel. I have met with three dietitians ( before, during and post chemo) and they all have told me that this is the time to eat what you want. Whatever is desirable to you- eat it. All calories are good calories at this point.

This diet is so counterintuitive and feels so wrong. I want to nourish my body, make it stronger, so I can beat this bitch in the upcoming rounds. Filling my belly with the cravings of a five year old seems irresponsible.

As my taste's change, and my relationship with food changes, how do I make eating more exciting and enjoyable? Is there a way for me to think about food differently during this time?  Or maybe I need to just suck it up and say, you know what my relationship with food kind of sucks right now- but its temporary.

I have to think that I can look at food in a different way during this time, make healthier choices that will nourish me, and figure out ways to start enjoying food again.

As Cancer slowly takes the things that I enjoy the most away from me, I have to figure out ways to fight back. I have to figure out ways to hold on to the things that I care about the most.

Friday, February 18, 2011

Conversations with a Green Skinned Lady Rocking a Purple Afro

I am pleased to report the overwhelming, mind-numbing, paralyzing fatigue has lifted! I am no longer sinking deeper and deeper into my bed. My mind is officially clear and I feel reborn.

The fatigue I experience post chemo is simply put- scary as hell. It is completely debilitating. Getting out of bed to go to the bathroom takes real mental effort. 3 days ago I was hooked up to a chemo machine and biked 16 miles- yesterday I could barely get up the energy to get out of bed.

My body is in a state of confusion. 

Yesterday at least I was prepared for what was to come. I knew the fatigue was waiting to set in, I knew I was going to become very quiet, and I knew I would eventually come out of it.

After nearly 24 hours of being in it- the fog has now lifted and I am revived.

Last night for the first time I took a pill called Marinol which is used to stimulate appetite and help manage Chemo's glorious side effects.  I lay on my bed waiting for the drug to take affect but was surprised by the delay. I stared at the clock, watching the seconds turn into minutes, and the minutes turn into hours.  Time seemed to be standing still. I stared harder at the clock, logically thinking that by glaring at it - the hours would go by quicker, and that my rebirth would somehow happen faster.

It didn't work.

Somewhere between glaring at the clock and watching E- news on repeat- Marinol's magic, or perhaps curse- took effect. All of a sudden I was ravenous! I ate a full protein packed meal, followed by frozen chocolates, and then laughed at my mom for a good 20 minutes.  She tried to understand what on earth was so funny, and I responded with deep belly laughs.

As my mom left me alone with my laughter,  I then proceeded to have a conversation with a green skinned lady rocking a purple afro.

In my mind we talked about mother nature, the animal kingdom, and foliage. 

It was deep.

I very quickly realized this drug was in full effect and there was just no stopping it. My mind was spinning, my sense of reality was dwindling, and I was becoming more and more silent.

I wanted it to stop but it continued for 6 hours. I eventually succumbed to sleep at 7:30 pm and woke up at 10:30 dazed and confused.  I stayed up for another few hours trying to come back to earth and make sense of WTF just happened.  

Once the drug wore off I managed to fall back to sleep until this morning. At 6:00 am I woke up, breathed deep, and realized my body was healing- really healing.

The body that I inhabit today is not the body I inhabited yesterday. Today I am strong, I am ready, I am present.

Thursday, February 17, 2011

Struggling to Find My Voice

After 4 days, 108 hours of intensive Chemotherapy, and 12 pounds of water weight,  I am pleased to report that I am at home, recovering, and most importantly healing.

Thank G-d during this round I entered the battlefield with tightly fitting armor, grenades and secret weapons. My ammunition seems to have been quite the match for Cancer's venom. Miraculously I am recovering quite peacefully and without much pain.

When I left Prentice Hospital on Tuesday night, all I wanted to do was hug the air, breathe in the smell of spring, and embrace life.

As we left the hospital my senses were on overload. I felt as if I had hawkish instincts- smells were stronger, the air was thicker, and Michigan Avenue was officially in hypercolor!  

I felt like I was in a dream- a blissful one at that.

On the drive home, I opened the windows and let the air envelope me. I couldn't get the air into my lungs fast enough.  As I breathed in and out, I found myself unable to speak.  

My dad and I drove in relative silence. Both of us were in our own inner orbits, trying to make sense of what just happened, and somehow prepare for what was to come.

During my last visit home, my parents and I spent a lot of time staring at each other. While I was experiencing tremendous discomfort, my parents were desperately trying to figure out how to take the pain away.

In the last round, I spent 2 days sinking into my bed- deeper and deeper-unsure if I would actually get out.  During that time, my parents quietly watched me- hoping and praying that I would reemerge and give them a sign that I was still here.

3 days after my release from Prentice,  I eventually did come out of this scary and dark place- and when I came out- I came out screaming.

I have been thinking a lot lately about how Cancer can rob you of your voice. 

When you are in the hospital, you have little say over your own body, and as each day passes, your ability to speak up becomes increasingly difficult. My typical loud and vibrant voice somehow becomes stifled in this environment, and further quieted upon my return home.

Some of my friends and family have even commented on how my actual voice sounds different throughout the fighting and recovery process. 

How do I find my voice, hold on to it, and eventually reclaim it?

Is there a way to fight the silence without making a sound?

There will be moments in this fight where I won't be able to talk- but I will be communicating. There will be moments in this fight where I may seem quiet, but I am really screaming.

For those of you watching, reading, supporting from afar- I hope you hear me.


Monday, February 14, 2011

My First Real Valentines Day

I have never been one for Valentines Day perhaps because it has always felt somewhat disingenuous,  unauthentic or even forced. I also never loved the feeling of having to compete with the rest of the world to purchase the perfect gift, plan the most romantic date, or figure out the exact right thing to say. Let's be honest this day is a lot of pressure! I have always felt that Hallmark holidays somehow cheapen how we should be loving each other. We somehow are given a pass by having one day that somehow makes up for all the days we have neglected one another.  

Why spend all this effort on just one day, when we should be constantly devoting our time and energy to reminding those we love how much we care about them.

We should be expressing our feelings to those we cherish in small but regular ways. We should be persistent until they hear us.  We should fight for them, nurture them, hug them, and kiss them whenever we can.  Life is just too precious to only devote one day to sharing these feelings. We do our relationships a disservice by not regularly telling each other how much we mean to one another.

In the past few months, I have felt an outpouring of love from family and friends I have know for years and some for only moments. I have felt appreciated, and touched on a daily basis throughout this journey and I hope that I will be able to reciprocate.  Giving back at a time where I feel like I am only taking is something I will continue to work on in the days to come.

I really feel that December 20th, 2010,  was my first real Valentines Day.  December 20th is when I learned of my preliminary diagnosis- it is the day my world stopped, and my heart fell to the floor,  breaking into a million pieces. Since this life changing day, a team of people have come into my life, ready and willing to help to clean up the mess, and delicately put me back together.  As I slowly become whole again, I know I am being molded and shaped by those that love me into a newer and perhaps more improved version of me.

Today as I finish day 3 of 4 at Hotel Prentice, I find myself staring in awe at at my final (appropriately red) chemo bag which is slowly and methodically entering my heart, seeping through my blood stream and curing me of my disease.

I am staring intently at my machine, connecting to my breath, and thinking deeply about my road to recovery and healing. In this meditative state, I feel myself overwhelmed by tremendous love and appreciation for those around me.

So today- and only today- may I wish all of you reading, a Happy Valentines Day.

Just promise me that this- may today be just one more moment where you have the opportunity to open your heart, be vulnerable, and embrace those closest to you.

With love from the 15th floor.

Saturday, February 12, 2011

Greetings from the 15th Floor- Fighters and Warriors Welcomed and Encouraged.

Greetings from the 15th floor! Home of stem cell transplants, blood cancers and solid tumors! This floor is a welcomed change from the 16th floor penthouse. There is no palliative care done here, people are up and moving, and I have already seen a few people that are my age.

The last time I was on floor 16, I saw six people pass away and be escorted off the floor. There families were in mourning and the air was heavy. As I have mentioned previously I found it incredibly difficult to separate their experiences with mine. My morale was affected, and I felt guilty about the intensity in which I was fighting for my life, and I knew that this environment could be detrimental to my motivation.

When I left the hospital I advocated for myself and told my nurse about my experiences. I requested that I be placed elsewhere and she honored it. Unfortunately the week I was there, there apparently were more palliative cases than normal. Typically the floor is inhabited by more patients with blood Cancer and solid tumors, however during my stay they were few and far between.

Now that I am on the 15th floor ,the ambiance is very different. Don't get me wrong- this is still a Cancer ward- and for many here- the stem cell transplant is the result of the fact that all other options have failed. That being said, the people I share the floor with are gladiators. They are fighting day in and day out for their lives desperately trying to beat this nancy bitch. I feel affected by the energy here and I am liking it.

Aside from the type of population that are on this floor there are some other differences. For one, my room is a bit smaller and doesn't have the three floor to ceiling windows that overlooked my beautiful city. Instead I have one small window that faces the Water tower and Michigan Avenue- still not too shabby.

Due to the fact that many people on this floor have literally no immune system, there are a lot of sanitary requirements that were not enforced on floor 16.  There are double doors to the entrance of the wing, washing stations outside every room, and all doctors and nurses have to wear garbage bag looking gowns  in the case I was to projectile vomit, bleed, or excrete any other type of nasty fluid- delightful.  I should also mention they more frequently wear masks, and they refuse under any condition to detach me from my Chemo drip- not even for a second to remove my tank top! This place is strict. To be honest, I would rather that they be overly cautious- there are some very delicate fighters in this place that need all the protection they can get.

Some of the patients here have caught a bacteria called (VRE) from being in the hospital for extended lengths of time. Many of the patients on this floor that are receiving a stem cell transplants- are here for over a month and sometimes two!!! Staying in the hospital for extended lengths of time, with little to no immune system, makes them more susceptible to picking up what many of us are able to more easily fight off.  I will have you know that my neighbors x, y and z  all have it. Apparently there are no real symptoms to this bacteria but the hospital is being very careful at monitoring who in fact is carrying it. I am carefully being watched which means I get to experience lots of invasive tests that force me to again check my modesty at the door.


The nurses on floor 15 have been equally as admirable and competent as on floor 16. Some are complete characters. Last night I had one nursing assistant that shamelessly hit on Marc and even went as far to ask what perfume I was wearing in the hopes that if she lathered herself with it she would have a chance. This went on for twenty minutes, was all in jest, ridiculously over the top- and gave Marc and I a good and well needed deep belly laugh.  I have no doubt Marc loved the attention.

Today I have a triple brunch date with some friends that have come in from Atlanta. I find it liberating to schedule plans while I am here- it helps create a sense of normalcy in a far from normal environment. Later this week I have yoga/meditation taught by the thoughtful and giving Becky Strauss, therapy, and a meeting to discuss nutritional needs with two good friends of mine. By scheduling my time in the hospital, I am distracted, and the hours go by incredibly quickly.

I cant even believe it's already day 2.

In addition to having a pretty active social life while I am in patient I have realized the importance of creating a home in the space where I currently exist. This round I have printed out a ton of photos from facebook, quotes from Ethan that inspire me, and decorated the room with keepsakes that I feel are important.  These relics re from my world travels, from simchas, from milestones in my life. I also have 2- 8.5 x 11 sheets that are double sided with pictures of places I want to go, goals that I want to achieve, and my favorite foods that I long to eat.

These photos help keep my eye on the prize and remind me of what my life is going to look like without Cancer.

I can't wait for that day. In meantime I will continue to visualize myself getting there, slowly and steadily climbing up this mountain with so many friends and family from around the world cheering me on for each and every step. Every day, every breath, and every moment that I fight, I am getting closer and closer to putting this behind me.

Your shouts from near and far make this journey all the less scary.
I am so grateful for you.

Wednesday, February 9, 2011

Shifting Gears

This past Monday was without a doubt one of the darker days since my diagnosis. Mourning the loss of Polly, and having two friends whose parents are fighting Cancer was overwhelming.  After completing nearly a full day of work,  I came down with a stress headache and took a two hour monster nap in order to try to make sense of a disease that doesn't discriminate.

Two weeks ago, in a drug induced state, Polly called my parents in tears. She was not crying because she was terrified of dying, or because she was in pain, but rather because she was all broken up over the fact that I was battling Cancer- and that it was simply unfair.

Even in her final moments, Polly was thinking of others and not of herself. How could Polly be consumed by my fight, when she was saying goodbye and making trying to make sense of the fact that her days were numbered?  Polly's capacity to give was remarkable. I have felt and continue to feel her presence with me during this battle.  I think the best way to honor her memory, is to fight every day with all the strength I can muster. Polly fought for every day and for every moment. I hope to carry on her legacy.

Monday evening Marc and I went to the gym and I found that exercise helped me release the stress, worry, and overwhelming grief I was feeling from earlier that day.  I have been exercising throughout my treatment as a way to better connect to my body- a body that I have trouble recognizing and understanding. When I exercise I feel I am able to better understand my body's abilities and limitations. There are many studies that indicate that exercise is beneficial for Cancer Patients. While I am not overly exerting myself, and certainly  am not running or lifting at the pace that I used to, I am moving- and it feels good.

After our session at the gym, I had a lengthy conversation with Marc and an email exchange with Ethan about the importance of mourning Polly, feeling the pain and sadness, but eventually shifting gears in order to continue fighting.

I felt guilty about having to shelve my grief, but I also recognized how these events depleted me of all my energy and drastically affected my outlook. In order to get my body and mind ready for my surgery and my second round of Chemo (which begins this Friday), I needed to protect myself by refocusing.

Yesterday I had a port catheter placed in the upper part of my right breast. This port ( also affectionately known as my trip nip, or port authority) will eliminate the need for future IV's and pricks. As someone that has recently looked like a heroine addict, I know this device will be a welcomed change to the daily pricks. Initially they wanted me to have a double port (affectionately known as my double p's) but the surgeon felt that I was too thin for this device.  The initial thinking was that this port could also be used for a potential blood transfusion of which I may or may not need. As a result, the surgeon opted for a mini power port, which is made of both metal and plastic laying just beneath the skin. It is a bit bizarre to know I have a foreign object inside of me, but I'll get over it. You can barely see the bulge, and the scar is a little larger than my biopsy.

These scars are my battle wounds and will serve as a reminder for how hard I fought.

As I gear up for round two, I have a lot of memories that I shelved and plan to draw upon when I symptomatic and scared. Thank you to those of you that have touched me and provided me with incredible memories over the years. I plan to use them as grenades for this round.

Cancer you better watch out.

Monday, February 7, 2011

The Profound Power of Touch

Last night I slept alone for the first time since I have been diagnosed. I have either slept at Marc's or at my parents- refusing to return home to my apartment. Perhaps I didn't want to taint my home with Cancer, or maybe I was scared to sleep alone because I was afraid I wouldn't wake up.

Last night I felt strong- and I felt ready.

As I woke up this morning, my cousin Polly in Israel continued to sleep. Polly never woke up.

Polly died this morning after a year and a half fight against Lung Cancer  Polly never smoked a day in her life. My dad called with the news, and I was overwhelmed with grief.

This disease is so just so mean.

Polly was in her late sixties, vivacious, hilarious, and perhaps the most energetic person I have ever met. She was borderline hyperactive, always with her hands in some project, moving around quickly, hoping you would catch up.

I visited Polly every year in the Negev. Her and her husband Bub were my home away from home. They took me in, fed me, bathed me, and always managed to provide me with the best sleep of the year.

Perhaps it makes a lot of sense that Polly passed away in her home, and in her sleep, peacefully surrounded by her husband, children, and grandchildren.

All I wanted to do this morning was hug my family in Israel-touch their faces, and tell them that I love them.  I wanted to hold their hands and sit quietly mourning the loss of such a tremendous spirit.

I left my house today with a heavy heart.

I headed to the hospital for another round of blood work. As I patiently waited in the reception area, I looked up and saw an old and dear childhood friend with her parents. She had reached out to me a few days ago letting me know that her mother was fighting advanced Kidney Cancer.  There they were looking to check in, fighting the emotions of anticipation, and hoping to get past a number of big hurdles.

I ran over to them, and embraced my friend speaking only a few words of which I don't really remember. I then turned to her mother, and we held each other, kissed each other, and cried.

There was nothing to say.

All we needed was to touch- and so we touched.

The power of touch is profound and perhaps more important than words.

I have been in deep thought today about how to celebrate Polly's life, and how to support my childhood friend.  I have not yet figured this out, but hope to have some perspective on this in the coming days.

In the meantime, I am going to hug my family and friends, touch their faces, hold their hands, and remind them how much I love them.

Sunday, February 6, 2011

Where Do I Fit?

It's been a week since my big haircut and the newness of my baldness has not worn off. When I look in the mirror I don't recognize this person- bald, with a hat, with a scarf, or with a wig. I admittedly have spent a lot of time in the mirror - trying to figure out who is looking back at me.  I still haven't figured out  who that is, or how I am most comfortable.

When I look at myself bald, there are moments when I see a woman of strength, a fighter, a survivor. And then there times when I look in the mirror and all I see is Cancer. I look hard, hoping to see something  different, but I realize I am unable to divorce myself from the fact that my my baldness represents being sick.

When I put on one of my wigs, there are moments when I see the playful, lively, creative person that I once was. And then there are times where I feel the wig is disguising who I really am, as someone that is fighting for her life, surviving Cancer, and yes- sick.
So where do I fit?

I love being bald, and also hate it. I love being able to disguise my illness and also feel ashamed when I do so.

How much of my identity is Cancer?

I promised myself that I wouldn't lose myself while battling Cancer- but it's hard.

Every day I wake up, I am unsure of how I am going to feel or how Cancer is going to present herself. I have had some days where she is but an afterthought, and others where she is center stage, hogging all the attention.

Is it possible to fight Cancer, and fight for my identity at the same time?

Maybe I am putting too much pressure on myself. Maybe in time, I will figure out where I fit.  Perhaps not fitting, and owning this state of flux, is exactly where I should be.

Friday, February 4, 2011

Want to Forget Cancer?

Go to the Oprah Winfrey Show.

Today for a full 5 hours, I forgot I had Cancer. Cancer did not have an invite to the show-and so she begrudgingly left my body- temporarily allowing me to experience one of the best days I have ever had in Chicago.

My friend Jill Salama is a producer at Oprah and she reached out to me yesterday asking if I was interested in attending. My immediate reaction was- hell yes. Then I started worrying- what if my body couldn't handle it? Would I be stuck in a large crowd? Would I have to wear a mask? Would I have to leave midway through the taping? Would I become dizzy and faint?

There were a lot of what ifs- some of which were realistic and deserved attention, and others that were downright destructive. I am quickly learning that I need to control my tendency to become consumed by what ifs because they more often than not are harmful.

The what if that deserved attention was-could my immune system handle a crowd.

Yesterday when I went in for blood work I was told my levels were up and that I actually had an immune system. My white blood count went from a 1.1. to a 3.7 in 4 days.  For those amateurs out there ( don't worry- I am included in this category) the wbc range goes from a  3.5 which is low, to a 10.5 which is high.  On Thursday, I was told I had a 3.7 which albeit was low but was on the up and up!

I wrote my nurse to see what she thought and she wrote me back immediately. "Jenna, go enjoy yourself".

So that's exactly what I did.

Today, my best friend Dan and I arrived at Harpo Studios, were seated front row center, danced on the stage, sang our hearts out, chatted with Tim Gunn from Project Runway, and were serenaded by Jennifer Hudson.

I laughed, I cried, and my face hurt from smiling.

I can't even try to sum up all of the memorable moments Dan and I experienced during today's taping because there were just too many. However, here are a few stand out moments that I must share.

For the first time Jennifer spoke with Oprah about her family's tragedy. In one night she lost her mother, her brother and her nephew. Their lives were taken suddenly, tragically and without warning. Her grief was profound, and she clearly is still struggling with their loss. She mentioned how she chooses to live her life fully, always hoping to please them and to make them proud.

If anyone is showing the world how to live it is Jennifer Hudson.

She has reclaimed her life this year by bringing in new life with the birth of her son, and by losing 80 pounds. She is in the best shape of her life and has made her health a priority.

As I sit here now thinking about her story it is hard not to feel inspired by her strength. In the face of adversity and sadness, she rose above. At a time when she could have retreated, she sang louder. Jennifer- your resilience is remarkable and your story will serve as motivation for my fight.

Before the show started,  Oprah came out and chatted with the audience for awhile to help pass the time. We somehow got on to talking about lipsticks-and how she feels lipstick can brighten up even the darkest of days.

I came close to raising my hand, to admitting to the audience and to Oprah that I was fighting Cancer and that lipstick has become my mood stabilizer of choice. I came close to sharing it, but fought the urge. Today was not about Cancer. Today was about enjoying life, living it fully, and laughing all the way home.

I look forward to more days where  I can live loudly, and where Cancer is but an afterthought.

Wednesday, February 2, 2011


On this cold and stormy winter day, I have had a lot of time to reflect on the angels that have suddenly appeared, or have been there all along, surrounding me, nourishing me, and healing me. I feel blessed to have so many of them in my life right now, it almost doesn't seem fair.

This posting is a tribute to them.

To Mom, Dad, and Nee- who watch, who touch, who hold me up, who brace my fall, and put me back together again. I love you with all my heart, I wish you could know how much.

To Marc- the love of my life, who wipes away my tears, sees me for who I really am, and is the best partner in crime I know.

To Lindsay Freud- Dr. Extraordinaire, who has spent hours of her time researching my cancer, guiding me, and asking the tough questions I would have never known to ask. You are a gift to me and my family- I hope you know that.

To Kasey- who cooks from the heart and and aims to nourish me-through food and friendship. She is at my bedside often, day or night, distracting me, making me laugh, supporting me.

To Annie- who flies in from Colorado repeatedly just to spend time with me. It doesn't matter if I am tired or wired, she is always there to make me laugh. She also always manages to leave her clothes all over my house- and my parents and I are hoping that one day she will just move in..

To Sam, Jesse and Dee- whose music touches my heart, and lifts me up every day. To Sam for 99 problems, to Jesse, for running a marathon in my honor, and to Dee whose angelic voice and skills on the ukulele rock me to sleep.

To Maggie- who writes me epic emails of her south american adventures, that transport me.

To Penny, Rachel, Hanne, and Shirelle- who call, email and check in all the time to make sure I am ok, hanging in, and staying true to myself. The experiences we have shared together still make me laugh out loud

To Shosh- for your tremendous energy, devotion, and loyalty.

To Dan- for all your surprises, and for being the brother I never had. I love you.

To Bree, Beth, Marc Smoler, and Erica Karp- who are committed to making me strong through food and nourishment.

To Jonny Immerman- my unexpected angel, who writes me daily using CAPS LOCKS AND !!!!!!!!!!!!!!!. His energy is contagious. Jonny's organization Immerman's Angels has helped make Cancer all the less scary. I will be forever grateful for his work, and a lifetime supporter of his organization.

To Ethan Zohn- my Canzer Crusher, Survivor, Motivator, and Warrior. Our conversations empower me, and you push me to fight harder every day.  Your story, your fight, and your will to live inspire me.

To Benji Salter- My co-conspirator, straight shooter, medicinal pusher, who has suggestions for all types of healing remedies for which I am incredibly grateful.
To Ann Goldenberg- My long lost friend from Birch Trail who has suddenly reappeared in my life only to make it richer. You are my head cheerleader, and a rock star survivor that just gets it -and gets me. You are my go to when I am panicked and you have this amazing ability to calm me down with a few simple words.  I look forward to continuing our friendship in the years to come, when I can join your vip Cured of Cancer club.

To Joelle - for reemerging, for fighting, for surviving, for supporting, for loving.

To Lauren Simmons Beam- for making London feel not so far away, for your love, support, and sweet way about you.

To Cantor Cohn- who is committed to my spiritual healing and the work I can do to strengthen my inner world. Your guidance has transformed me.

To Marsha Cohn- your energy, support and love combined with Richard's guidance makes me strong.

To the Rochman Family- all of you- (and there are a lot of you)- to Bonnie, for giving me the gift of future life, for Shira, Orli and Aviv who show me how to really Kill it in the Butt,  for the sesame street crew, for the recipes made from love, for Dr. Rochman's advice, to the countless check ins- I feel your love daily.

To Lonnie Nasatir- the best boss out there. Plain and simple. I feel grateful every day that I get to work for you and learn from you.

To Risa Nasatir- your Hamsa is keeping me safe, and making me strong,

To My ADL Family (Staff and Board)- you root me on, keep me sane, and make me feel normal ( when we all know I am far from it!).

To My Unexpected Hospital Visitors- Sarah Palestrant, Noam Belkind, Rebecca Strauss, Wendy Passen, Wendi Geffen, Becca Gruenspan, Danny Cohen and Bernard Cherkasov, Jeremy Dubin, Shoshanna Weinberg- you made the hours pass quickly with your love, support and humor!

To Dr. Eytan Raz and Dr. Sarah Palestrant- for reading my scans, explaining them in laymen's terms, and for cheering me on to fight fight fight!

To Mattie Whipple: For running a marathon in my name. You are one serious badass.

To Kat Zamiar who is going to get my ass into shape.

To Becky Strauss who is going to help me breath deep and connect with my body.

To the MFA Crew- you send me love from around the world- I feel as if I am constantly being hugged by you all.

To My Montreal Crew- how I miss you. I have such a special place for you all in my heart.

To the Latin Crew- Dani, Fer, Fabi- your zest for life, and energy pulsates through your emails. Our memories together get me through the tough days.

To The Glencoe Connection and New Trier Trevians who have come out of the woodwork offering support and love. I read your emails and am touched by them every day.

To Shirl, Debbie, Perry and Ruth for supporting my mom, loving her, and looking after her.

To Neely's insane crew of friends whom I love and adore- thank you for protecting her, making her laugh, and holding her up.

To Dr. Leo Gordon- the man with the plan who is going to save my life.

To those I may have forgotten- I realize there was a risk in making a public acknowledgement because inevitably I will have left some incredible people off the list. I hope you will accept my apology in advance and not take it personally. Please know that if you have reached out, I have felt it. I read everything you write, I listen to your messages, and I am forever touched by your generosity.

During such a scary time, I have never felt more love in my entire life.
I feel blessed in every way -and am grateful every day.

With all the love and support I have- this Cancer doesn't stand a chance.

Tuesday, February 1, 2011

Accomodating Cancer

Yesterday was my first day back at work and I was overjoyed to be there.  I feel incredibly priveledged that I am able to work with individuals that I whole heartily admire and respect. My co-workers have become in many ways a second family to me. They nurture me, challenge me, and support me.  I was excited to return to work not only to see them, but I was eager to have the break from Cancer.

My boss called me last Friday with excitement. He had hooked me up with a VIP pass to the signing of the Civil Union Bill with Governor Quinn.  This bill is something my agency has worked tirelessly for, it was something I was personally proud of, and it was a tremendous motivator for getting back to work on Monday.

Yesterday I went in for blood work and arrived at work at 8:30.  I was met by a welcoming committee of co-workers that were genuinely excited to see me back. It felt so good to walk through those doors, to unpack my bag, and to sit back at my desk for the first time. I showed off my new doo(s) - yes they saw me bald- and the day continued as normal.

I received an email from my nurse saying that my blood counts were very low and that I needed to be especially vigilant about large crowds and hand washing. My body was more susceptible to illness and it was up to me to set limitations and be responsible.

Why did I have to be responsible today? Why did my body decide to lower its immunity today???????

I sat with the news and was unsure of what to do with it. I knew it was ok to be at work, but I sent an email to the staff explaining that I was immuno-suppressed and that anyone with a cold, or developing a cold should steer clear.

I decided to write my nurse to ask specifically about the event with the Governor. The media was reporting that they anticipated a few thousand people in attendance and that the lines would start a few hours ahead of time. Could I be in this large of a crowd? If so, was I comfortable rocking a mask in front of all the cameras? If I chose not to go would this be me surrendering to Cancer?

I stared intensely at the computer screen hoping that my nurse would give me the green light. She wrote back- if you go- you have to be quick.
Could I be quick?

2:00 rolled around and I was agonizing over this. If I chose not to go- then Cancer for sure won. What a bitch. If I chose to go, then I win, and Cancer loses. Yay. If I go and get sick, then Cancer wins- crap.

Teary eyed, I wrote my boss, thanked him profusely for the invitation, but declined. I wanted to go more than anything to witness history being made in the state of Illinois. I wanted to see the faces of gay and lesbian couples who had fought for these basic rights for 20 plus years. 

Yesterday I accommodated Cancer- or maybe I chose to give her the finger.  By not going to the event yesterday, I may have bought more time to work, to play, to spend doing the things that I love to do. Getting sick the first day back at work seemed rash, seemed irresponsible, seemed downright stupid.  I kept visualizing attending as walking into a war zone. My body unsure of its surroundings and fighting hard against others bacteria.

It wasnt worth the risk. I accepted it. I am actually proud of the decision- albeit not an easy one.

Learning to live with Cancer is proving to be a daily challenge. I can't simply agree to the events that I used to, but I refuse to be held hostage by my disease.

I am learning slowly how Cancer is apart of my new identity, but also has to at times take a back seat.

Marc and I have a new rule, that we don't talk Cancer after 8. ( This rule of course changes if we dont see each other till 8- but you get the idea). When I go out to dinner with friends, I realize they want to hear about Cancer, but frankly I don't remember sending her an invitation. There needs to be a balance between talking about Cancer, and letting her dominate the conversation.  I still need to hear about what is going on in my family and friends lives. It can't be all about Cancer all the time. I agree she is an attention whore- but she is going to have to learn how to take a back seat.

I am slowly learning how Cancer can be apart of who I am- but not the most important part.
I am still me under here- perhaps the most naked version of me you have ever seen.