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.

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.

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.

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.

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.

 

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.

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.

Awesome.

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.