Sunday, January 30, 2011

Seeing myself for the first time.

The day of my haircut I was hardly in a good state of mind. I was still experiencing pretty severe side effects, my stomach was in a knot, and the last thing I wanted to do was cut off all my hair. I had to mentally prepare myself to get out of bed, shower, and put on a decent looking outfit so we could make our 12:00 appointment at Jeff Berry and Brian Blanchard's home. Once we got into the car, I started feeling better. I think the laying around and sinking into my bed to rest has been helpful in allowing my body to heal, but in some ways it has not helped my overall mental state of being.

As we started to approach their home, I had this burning desire for a chocolate milkshake. I called out to my parents, they looked at me like I was crazy, and they quickly turned the car around in search of the first McDonalds or Baskin Robbins. If I ever was going to splurge on a chocolate milkshake, it was going to be today. I needed that shake, like a parched mouth needed water.

All my concerns about whether my stomach could handle the dairy, and handle the fat fell by the wayside. I started gulping it down like it was going out of style. Some may call this emotional eating, but when you haven't had a real meal in 6 days, a chocolate milk shake is simply a necessity.

We arrived at Jeff and Brian's home and they greeted us with open arms. Jeff and Brian live together, and give haircuts and provide human hair wigs to patients going through chemo. The service they provide is both critical, and honorable.   The two of them, walked me through every step of the process. They spoke in low and soothing tones, as if they were rocking me to sleep.

I knew I wanted to donate my hair to locks of love, so the first order of business was to rubber band every section of my head in order to maximize my donation. Some clients come in and have a series of haircuts so they have a better understanding of what they will look like post chemo. For me, it was more important to give back, than to have a sense of what I would look like after treatment.

Once my hair was tied up in sections, I closed my eyes, took a deep breath, and Brian slowly started cutting. One piece at a time, my hair fell gracefully to the ground.

I inhaled and exhaled deeply and felt this unusual sense of calm as he slowly clipped away the years of growth.  The calmness I experienced was like no other. All of my troubles, nerves and fears slowly were dissipating with each cut.  I was breathing fuller, deeper, and with each breath I was getting stronger.

I opened my eyes and saw my head covered in jagged edges. I looked deeply, and actually liked my reflection. Brian continued, telling me that my hair was just going on a vacation, and that I would join her soon enough.

He then brought out the razer.  I started to tear up, and then managed to control the images of persecution and victimization the sound of the razor conjures up for me. I breathed into it those images, and released them- quickly.

I closed my eyes- reopened them- and stared back at a beautiful bald head.  I wasn't scared of what I looked like- but rather I felt I was seeing myself for the first time.

I never knew what my head looked like under that mop of hair.  i had no idea how little my ears were, or how smooth my head really was. There were no noticeable distortions or discoloration, just roundness.

Brian immediately put on my new wig, and I had almost asked him not to move so fast. I wanted a moment with myself. I wasn't scared of who was staring back at me, but rather was getting to know her for the first time.

Eventually Brian placed the wig on my head, and I looked like I did when I walked into his home. The experience had come full circle.

When I left Jeff and Brian's home, I ran my fingers through my new locks, and then immediately ran upstairs to my room to stare at myself in the mirror. I couldn't stop looking at my baldness, at my strength, at my will to live.

The fight in me was so apparent, was so pronounced, was so present-  I felt invincible.

Friday, January 28, 2011

Getting My Hair Did!

As expected, the world looks quite different today. With 12 hours of sleep under my belt, I am rested, more alert, and less fearful.  Most of my fear the past few days has been in trusting my body's ability to fight. I am having to learn how to communicate with her, listen to her, and accommodate her when she needs help.

What people don't realize is that the side effects from Chemo are in many ways indescribable. You could try to sum them up with labels that we commonly use ( like fatigue, nausea, dizziness, upset stomach)- these terms plain and simply do not do my symptoms justice.  I am experiencing symptoms reminiscent of these common experiences, but at the same time, the way I am experiencing them is completely different and new.  

Now that my symptoms have become more manageable, I feel emotionally ready to process tomorrow's big day.

Tomorrow, I am getting my hair did!!!!

My Chemo, EPOCH,- also referred to by Marc and I as EPOCH-Shakur is downright nasty with hair. She takes no prisoners. I have already noticed changes in my hair in the past week- it no longer has a lustrous shine, it clogs up the drain in the shower, and its looking rather lifeless.  There is a 95% chance that I am going to lose my hair before the 2nd treatment which is on February 11th. I have two choices- one to wait for my hair to fall out in clumps- on Cancer's terms, or two- to take the plunge and go bald when I feel I am ready and able to.

I think there is a common misconception that cancer patients are fearful to shave their heads because of vanity. In reality, my fears have nothing to do with how I look- rather I hate what shaving my head represents. Losing my hair makes me feel victimized, vulnerable, weak, and it slowly and methodically chips away at my femininity. What people don't understand is that when I shave my head tomorrow- it will be nothing like what Natalie Portman, Demi Moore or Britney chose to do for movie roles, or in (Britney's case was the result of a manic episode).

This is different.

I have been dreaming about this day for the past month in hyper-color.  I am petrified that I wont be able to recognize myself in the mirror and that I will slowly lose apart of myself in the process. Every day I fight to hold on to who I am.  While my hair is not my identity, it represents life, vibrancy, health, and femininity- all of which are very much apart of who I am .  

I am well aware that this diagnosis has profoundly changed me- in a way that is irreversible.  The act of shaving my head, in some ways is the final recognition that I am no longer my former self, but a different version.  I suppose it is up to me to determine who that person will be.

I am shaving my head tomorrow right before Cancer claims another piece of me. I cant let her take and take without putting up a fight. Tomorrow I plan to look Cancer deep in her eyes, take the plunge, and scream as loud as possible- I am bald and beautiful!!!!!!!!!!

In order to help make this haircut easier- one of my closest friends, Sam Barsh, decided to write me a song to help make the process a bit sweeter.

Sam, is a legitimate musical genius and has a magical ability to hold full conversations in rhyme.
The day after my surgery Sam came over with a crew of childhood friends to perform his rendition of Jay-Z's 99 problems. I swear this could be the anthem for Cancer patients around the world.

Happy Listening!

"99 Problems But a Wig Ain't One"

by Sam Barsh

If you havin' hurl problems, got some pot for you hon
I got 99 problems but a wig ain't one, hit me!


99 problems but a wig ain't one
If you're having hurl problems got some pot for you hon
I got 99 problems but a wig ain't one


De-cember came, Jenna felt some pain
Went to the doctor, tried to get it contained
He took her in a room, ran a couple exams
When the results came, he said "um excuse me, ma'am
It looks like we found a little cancer in your body"
That could cause problems for a young Jewish hottie

Just, gotta be strong
Tell the cancer its wrong
Let it have its swan song
Then you get to live long tiiiime!

Soon you'll be to chemo
What Fallout Boy was to Emo

You're gonna win this thing, come out standing tall
With some penciled-in brows and a nice cue ball
But don't worry, theres a solution for that
Its called the wig store, and you should get there Stat

Buy 1, 2, 3 or 3 pair
Go traditional, or you could do some punk rock flair, Shit

I know what its like to be bald
I've been bald for years
I shed hairs like a baby shed tears

So bust out your credit card and have some fun
I got 99 problems but a wig ain't one, hit me!


99 problems but a wig ain't one
If you're having hurl problems, got some pot for you hon
I got 99 problems but a wig ain't one

99 problems but a wig ain't one
If you're having hurl problems, smoke some pot with me hon
I got 99 problems but a wig ain't one


(So you're) Gonna be bald, but you gonna have options
The wig store, you know they gonna have some hot ones
Give you a fake hair inch, and you'll take a mile
Cuz can't nobody fuck, with that Jenna Benn style

If you need some idears, i'll hit you w/ a couple now
You could go Fergie Ferg, like a Boom-Boom-Pow
Or Jersey Shore, like a Paulie or Snooki
Princess Leia style, or Chewbacca the Wookie

You could burn up the streets like the old twin towers
In that Beyonce wig from Austin Powers

You could go Matthew Perry style and gel up your bangs
Or you could do dracula, black wig with some fangs

You could rock a fade
Like a young Dwyane Wade
You could even go Sinead
Say you cut it with a blade

Kardashian brown, Hilton blonde
Lohan red, or dreads and a grill like Lil' Jon
So break out the credit card and have some fun
I got 99 problems but a wig ain't one, hit me!


99 problems but a wig ain't one
If you're having hurl problems smoke some pot w me hon
I got 99 problems but a wig ain't one

...And if you're havin tuning problems i can fix em for you hon
I got 99 problems but a pitch ain't one.
Sam Barsh - performer, composer, producer
"Pay what YOU Feel" for the new EP! at

Thursday, January 27, 2011

Living and Existing Somewhere In Between

After five days of continuous Chemo, I was finally released from Prentice Hospital. At 7:00 p.m the night before, I packed my bags, tidied up my room, and stared deeply into the big bad city. I wondered how would I feel when released? Would my senses be on overload? Would everything smell, taste and feel different? How would my in-patient stay affect my daily perspective? Was I ready for independence again? Was I ready both physically and emotionally to come home?  Could I handle life outside these four walls?

After being hooked up for five days, ones sense of independence is drastically compromised. My Chemo machine became an additional appendage, one that I didn't ask for- but had no choice but to deal with. Every hour I was watched, monitored, and observed.  When it came time to be discharged, I started to wonder if my body would be able to function on its own? Could I manage my symptoms and listen to my body's internal dialogue without  the help of others?

It wasn't until I arrived home, took a long shower, and got tucked into bed, that I realized I was experiencing post-traumatic stress. I was unsure of how to exist in this space between the hospital and home. I was not comfortable in either place and somehow was forced to exist in this land of in between.  

The level of terror I felt at home was paralyzing. I sat in the kitchen with my dad, and stared out into space. I couldn't stop weeping.  I was terrified that my body would respond violently to the effects of Chemo and that I wouldn't be able to receive the necessary care to deal with it. I was unsure of what to expect, and I was scared of my body's potential limitations.

I went to bed last night at 9 and fell into a deep sleep. I woke up throughout the night and extended my hand across the bed- still convinced that I was somehow attached to a machine. I then would take a deep breath, picture myself wrapped in a cocoon of blankets, and fall back asleep. This morning when I finally woke up to face the day, I had tears streaming down my face. The fear of dying in my sleep was so palatable, so real, so terrifying, I couldn't speak.

Last night and this morning I felt as if I  was staring at my own mortality. I let myself be overcome by fear and I was ashamed at the ease in which it happened.

On the 16th floor, while I was fighting for my life, I watched patients say goodbye and try to make peace with death. There is no doubt that watching this process affected me to the core. I still am trying to get the blank and hopeless stares from the bed ridden patients out of my head.

In the days to come, as I recuperate, and make peace with my new existence, I hope to let go of what I saw and heard, and face the day stronger.  I realize that I can't be wonder woman every day, and I am allowed to have moments of doubt, weakness and fear. I just hope that I will learn to better manage these moments, prevent them from overwhelming me, and refocus quickly so I can get back to Killing this Cancer in the Butt!

Tuesday, January 25, 2011

Favorite Moments from the 16th Floor.

1. "Hello Jenna, welcome to floor 16, please note that all modesty has been officially checked at the door. As apart of your initiation we need to swipe your ass for bacteria and we need you to measure everything that comes out of your body." " Everything?" "Yes, everything".
2. My "sleep schedule"- premeds at 11:45 pm, Chemo Bag switch at 12:45 am, blood drawn at 2am, 4:30 bed check, 5:00 am scale.
3.  "Preston, do I really need to get on a scale at 5am?" "J- this is the best time to weigh you." "Really, Preston- why is that." "Because no one else is up, and you haven't eaten". "Um ok- but  I am pretty sure 8 am would work too". "Come on J- get on the scale."  Preston- why has my weight gone up 10 pounds. Oh its just water weight -weight, you will pee out in a day." " Is this normal? "J- I don't know what normal is anymore"."Well that makes two of us"
4.  Taking a shower after gaining 10 pounds means I am no longer able to fit into the same size towel I used the night before. In a state of desperation I came out of the shower and declared to Marc, "babe, you are officially dating a renaissance woman with curves everywhere."  My changing body continues to fascinate me.
5.  Taking a diuretic to help get rid of the water weight meant urinating every 7 minutes. I was a great host.  I also lost 6 pounds in 2 hours.
6.  Walking a mile yesterday with Kasey, wearing a strobe light ring, and chatting about nonsense. Felt so good to just shoot the shit.
7.  Danny and Bernard's visit which consisted of dancing in my room, watching beautiful men eat ice cream, and flirting with hospital staff.
8.  Kasey passing out and snoring while we were meditating, and then crawling on the floor for no real reason at all
9.  Post work out, watching Jersey Shore on the computer at full blast in the community room while an elderly gentleman stared out into space. How do you tune out Jersey shore?
10.  Neely's friend's mother who teaches yoga for cancer patients ( and whom I have never met), made a surprise visit and showed up with great energy and a new lipstick!
11. Meeting a palliative care patient and telling him he looked great. The grin that came across his face was priceless- a memory I will cherish in years to come.
12.  Watching my parents faces light up when they saw I was actually tolerating the Chemo, and feeling good. I saw a light in their eyes I haven't seen for a while now.
13.  Having date night with Marc which consisted of eating dinner, talking politics, and watching Government Mule live at Jazzfest.  I felt transported.
14.  Nurse Sue positioning biggie at the top of my Chemo Machine, dressing her with a bow, officially making her look like a parisian bird. She is styling today. Nurse Sue claimed it was critical that she be tied on, because it would be a tragedy if she stumbled to the floor and her eyes fell out.  We both knew she was having an intimate moment with Biggie.
15. Nurse Laura wrapping me in a hot blanket like a cocoon before going to bed at night. I felt safe, I felt secure, I felt loved.

These moments make me laugh, they make me cry, they keep me strong.

Sunday, January 23, 2011

Day Three- How to Make the Hospital Your Home

Its Day 3 and I am feeling great. This is probably the first time in a month that I feel completely like myself. The symptoms I have been dealing with on and on for the past sixth months are gone. This includes fatigue, night sweats, loss of appetite, weakness, fever, and headaches. Gone!!!! Today and yesterday I have had energy, my mind feels clear, and the person that I once knew has reentered the building.

I know this may be temporary but at this very moment I am giving my former self bear hugs and kisses. Where have you been????? I am so happy she is back even if its just for today, or for another hour. I really loved who I was before all of this- not in a narcissistic kind of way- I mean I have missed the energy and zest for life that I had become accustomed to and had built over the past few year.

Cancer has not necessarily stripped me of those qualities, but she has made it more difficult to feel and access on a regular basis. So glimpses of my former self are embraced and cherished.

So here is what I have learned about my hospital experience so far. The days are a piece of cake. I roam the streets ( well the streets of the 16th floor) pretty regularly. I am not allowed to leave the floor because of my disease and the fact that there most people here are a hell of a lot sicker than I am. Its a highly sterilized floor that wont accept flowers ( due to bacteria) and latex balloons ( not sure what thats about but oh well). I have done a mile lap so far today, road the bike for 40 minutes today and yesterday, and I am quickly realizing that  exercise is nourishing my soul. Being able to move, and connect with my body makes me really feel alive. It also makes me feel like I giving Cancer the finger.

I also make it a habit to shower twice a day, and always apply lipstick. I know this may sound ridiculous. I have cancer, I am in a hospital, who the hell do I have to impress?!
For those of you that know me well- you know that I enjoy dressing up, experimenting with fashion, and wearing lipstick! Why should Cancer take this from me? Trying to retain normalcy in a world that is far from normal- helps!!! Plus lets be honest, putting on lipstick takes no effort but goes a long way.  This will be a daily ritual no matter how sick I am.
Deal? Deal.

I have really started to bond with chemo these past few days. I look at her with affection and Biggie is perched at her helm watching over me and keeping her in line. Right now he/she is spread eagle on top of the machine ( i probably should go fix that- since he/she is not really decent!)  I go back and forth about her gender- Marc thinks Big Bird is a boy, I tend to feel she has a women's demeanor. Since in my mind Cancer is a bitch ( as in a female) I kind of enjoy thinking of Biggie and Chemo as my fellow female allies.
Dear Cancer: Not sure if you have noticed what you are up against already- but please know you are in a serious bitch fight.

The first thing I did when I came into my room was open all the shades, and create a shrine. By my window sill I have cancer books, prayer books, shabbat candles, Cookie Monster and Elmo, trashy Magazines, meditative cds, Scrabble, my Ipad, an SLR camera, and banana grams. I also have 2 tvs! One is a fancy flat screen and the other is an older tv with a dvd player where I have been attempting to watch Crooklyn for the past two days.

My room has become my haven at night. Its cozy, it feels like an apartment, and the view of Chicago is breath taking. There is nothing like feeling like you are in the heart of the city, when you are stuck on a floor for five days. My mind wanders, and I can visualize, smell and taste many of my favorite city hangouts.

Last night Marc and I played -where would your rather be. At first I think he thought it would be a cruel game to play, but for me, I have every intention on visiting these places, and doing these activities in the future. It may not be tomorrow- but it will happen -and the visuals help me. They provide me with a form of escape, and they give me hope.

So here is where I would rather be-
1. Hiking sand dunes
2. Slow dancing during fast songs because its inappropriate
3. In Hawaii on a beach- feeling the sand beneath my toes, and smelling the salty air.
4. Biking the Natchez Trace in Nashville, TN
5. Eating watermelon and cheese on the beaches of Tel Aviv
6. Taking a bike trip across Europe
7. Perusing the markets and riding camels in Morocco
8. Sipping Viennese Coffee in Austria
9. Sharing a bottle of Malbec with close friends.
10.  Holding my close friend Penny's baby in the next few months after she is due this spring. I cant wait to hold her, smell her and stare into her big round eyes.

These memories, wishes and dreams keep me going every day as does the love from my family and friends.

So on that note, I am off to take a little snooze that I hope will transport me to some of these places that I believe are sacred. Who knows, maybe some of you will make an appearance in dreamland.

Saturday, January 22, 2011

Day One of Rituxin and Chemo- Check

Yesterday was more difficult emotionally than it was physically. My parents picked me up at 9:45 to head to Prentice Hospital to check in. Upon arrival  I was immediately amazed at how beautiful the hospital is. At the entrance lies a beautiful flower shop, Argo tea, comfortable chairs with non-sterile hospital lighting.  The check in desk very much looks like one you would find at a 4 star hotel.

"Checking in for five nights"- Last name Benn, First Name Jenna"
"Date of Birth?"- 10/4/81- 29 years old.
 Anytime I am forced to articulate my age ( which is frequent in these parts), I find myself getting choked up. Its is still hard for me to digest how someone so young should have to be faced with their mortality.

 I then think about all the pediatric oncology patients that are fighting for their lives every day with a fearlessness that is nothing short of remarkable. When I think about them,  I remember to stop feeling badly for myself.

We were met by someone from the intake department who quickly moved us up stairs  to what I have been calling the penthouse. The 16th floor of Prentice overlooks the entire chicago lakefront and skyline. Everything about this hospital is brand spanking new. At first glance this place looks much more like a hotel than a hospital. It was only when we started rounding the bend and I realized the hospital scenery was only a facade masking rooms where the sick and dying remain. I took a few steps back, turned to my parents, and let out a long deep yelp. I cried into their arms with with everything that I had.  I was freaked out.  This floor which I am not allowed to leave, is going to be my home for the next 5 days, every 17 days, for 4.5 months ( if all goes according to plan).  I started to feel panicky and hated the feeling of being contained for such long periods of times. I suppose this was the true definition of a stay- cation and I didn't like it.

After my momentary freak out- and it was a good one- my parents held me up, arm in arm and slowly walked me to my room. Its a room with a view, overlooking Northwestern Medical Campus, the lake front, and many of the high rises in the loop. There is a massive flat screen Tv that allows you to check email. And they have freaking room service here. Yesterday I order Quesadillas and a chocolate chip cookie ( as i try to stick to my high calorie diet these days) and it was delicious.
Things were looking up- at least temporarily.

My prentice initiation consisted of giving a stool sample, a urine sample, and blood work. This was no hotel.

The 16th floor is an oncology floor for blood cancers and palliative care. In my quick tour of the facility I saw a lot of old men that appeared to be at the end of the road. It feels strange to know that my neighbors next to me are making peace with their lives, reflecting on their accomplishments and failures, and slowly learning to embrace what is yet to come.  Having death and dying juxtaposed with a young girl fighting for her life,  feels strange and perhaps not fair.

Yesterday they took my vitals, and measured my weight. My chemotherapy has to be so precise and in line with my weight each day for it to be effective. They have this down to a science- literally!!!
I was upset when I stepped on the scale to see that I had lost more weight. I am fairly convinced however if I keep eating quesadillas and chocolate chip cookies, I will gain back some of the curves that have gone on hiatus.

When the nurse mentioned that the chemo would begin in 6 minutes I once again had a mini freak out. At this point the picc line had already been put into my arm, streaming into my heart. It was a just a matter of time before this go-cart would be plugged in and ready to go.

Psychologically its a hard idea to get past. In some ways you can think about the start of chemo as the start of your medical fight against Cancer. I welcomed this idea but I struggled with this also symbolizing  the first day of my new life, my new reality, my new normal. I have no way of knowing how I will react, and what the outcome will be. However, what I do know, is that after this, my body, my mind, my spirit, my soul, my outlook, and the way I choose to live my life, will be forever changed.

So on January 21st, at 3:00 pm, the medicine entered my bloodstream and my life forever changed. I can only hope this date and time will one day be cause for celebration.

I have experienced no side effects what's so ever from the drugs so far. After they gave me steroids I felt like myself again, full of energy and life. I even egged on Marc to see if he wanted to go for a run! It was said in jest but I really felt that good. 

I hear the first few days of treatment have very little side effects but the latter days and the days following discharge are when symptoms start to emerge.  The goal of this treatment is to knock out my immune system- not completely like with Leukemia patients, but pretty close. By knocking it out we can slowly rebuild it so it can learn to better fight off infection. During the days I am out of the hospital there will be times I will be very immunosuppressant which means I may have to avoid crowds, all sick people, avoid hugging and kissing, and wear those famous tourist masks we see people rocking in the airport.   We will see how this unfolds and how I will be able to leave my own mark on my relationship with Cancer.

What I am quickly realizing is that every Cancer survivors experience is their own unique experience.  Because certain symptoms and issues happened for them does not mean this will be the rule for me.
As I have said before, I am a chocolate vanilla swirl ( or maybe a chocolate peanut butter swirl from Loves Yogurt)- my case is unique, I am unique, and how I will respond to all of this will undoubtedly be unique.

Signing off from the technicolor dream world I am currently living in.
For those of you that are in the area - I welcome visitors.
Just call me!

Thursday, January 20, 2011

Preparing for Battle

1.  5 days worth of cool, comfortable clothes, with easy arm access- Check.
2.  Ipad, laptop, Cancer survivor books, Jewish meditation cd- Check.
3.  Biggie (Big Bird) and Moe ( Elmo)- Check.
4.  Shabbat Candles- Check
5.  Photos of Marc and I on the beach holding hands- Check.
6.  A mental collection of beautiful and relaxing places I have been to or hope to one day visit- Check.
7.  Upbeat world music- Check.
8.  Peppermints and Lemonheads- Check
9.  A hot shower and a close shave- Check.
10.  Singing L'Chaim from Fiddler on the Roof at the top of my lungs- Check.

Ready for battle?

Hell yes.

The anticipation is finally over. Tomorrow I will begin to actively and wholeheartedly fight my Cancer. I no longer will let her take punches and stand there puzzled. Its time to defend myself.  Tomorrow- slowly and methodically I will deliver punch after to punch in retaliation for the last 6 months she has held me hostage.

Every 17 days I will be admitted to Prentice Hospital where I will spend 4-5 days having Chemo 24 hours a day.

Thats a lot to digest.

Strangely enough when my oncologist delivered the news, I felt a tremendous sense of relief and hope. He explained that he would rather over-treat me than under-treat me- to help ensure this Cancer doesn't come back.  He also believes that this regimen will help ensure I wont have radiation down the road.

I never thought I wold be excited to start Chemo- but I really am. I think reframing my relationship with her has helped a great deal, and while the wait has been brutal it has given me a lot of time to think about what is to come,  and reflect.  I am not as wrapped up in the side effects as I am focused in knocking her out.

As I prepare for my long hospital day I posit a few questions to those of that are reading.

1. Do you have any "light" t-v shows that are easy to get into and will hold my attention?
2. Any books that are page turners (that  preferably have nothing to do with Cancer?
3. Any rituals, thoughts, quotes, mantras, prayers that you think I should consider integrating into my practice?
4. Any good new music???

Thank you for your input! I welcome it.

It's strange to think that this will be my last post before Chemo enters my body and before I really start fighting. Actually- scratch that. I have been fighting for a long time now- maybe not with medicine but with my mind.  Tomorrow I will get to deliver the 1-2 punch.

Thank you all for your thoughts and prayers throughout this process.

I not only hear you, but I feel you.

Wednesday, January 19, 2011

Double Takes or Maybe Triple Takes.

When I lived in Montreal I had a roomate named Rachel who very quickly became like a sister to me.  We lived together for five years, and by the end we were able to complete each others sentences and know what each other were thinking.

Rachel used to always poke fun of me because I would do double takes in the mirror as if I didnt recognize my own reflection. She used to get such a kick out of this -and shamelessly ridicule me in the process.

I think there were a few valid reasons for my state of confusion. When I came home after Thanksgiving break freshman year I decided to dye my hair pink and piss my off my  parents. This was my form of rebellion-a pathetic attempt in retrospect. I still am unsure of what I was responding to or rebelling from.  Regardless,  my rebellion continued.  A few months later I proceeded to dye it blue, cut it all off, and then eventually rock out a black and white look look which resembled a skunk. I am not sure what I was searching for- but I can tell you I was digging real deep. In my 3rd and 4th years at Uni, I calmed down, and slowly eased back into being a brunette.

Aside from my ever-changing hairstyles, I also put on weight. Instead of owning the fact that my shape was changing, I fell into denial. I somehow was able to justify in my head that because Canadian sizing was different, I hadn't really put that much on, if any at all. I realize now I was only fooling myself.  In my defense I was 18, legally allowed to drink, and the -30 temperatures were not exactly conducive to hitting the gym. I recognize those are excuses, and when it comes down to it - I wasnt taking care of myself the way I should have been, and my reflection in the mirror expressed that.

In the past 3 months I have lost 20 pounds. I am not sure whether or not to blame Cancer or stress, but lets be honest they are both one in the same. Unfortunately unexpected weightloss is one of the many symptoms of Lymphoma. I initially thought the weight was coming off because I had spent a few months regularly  working out 4-5 days a week, eating healthy, and living well. There was a new love in my life, and staying healthy was priority for both of us. Marc and I became gym buddies, and we learned to pushed each other physically. People started to make comments about my weight loss and I initially took it as a compliment. I was working hard,and my body was showing results.

While there is no doubt my healthy lifestyle affected to my changing shape, Cancer is what caused me to lose weight as rapidly as I did.

The change in my appearance now, has me again doing double takes. I dont recognize this body anymore, and I dont know the person staring back at me. Don't get me wrong- I am not emaciated, but I just look like a smaller version of my former self.

Tomorrow I am harvesting my eggs and my belly is large and in charge! After 15 days of taking hormones and giving myself 4 shots a day, I actually resemble someone who is 3-4 months pregnant!  It feels so strange to look pregnant, but to appear thinner than I am used to.

I so badly want to look in the mirror and see who I used to be. 

While my attempts may be desperate, and perhaps futile, every morning and every evening I stare back in the mirror, hard, hoping to see a flicker of my former self.

I am mourning my former self and the reality I abruptly left behind. I am trying to embrace this new normal, but it isn't easy. I think about my life before Cancer and with Cancer, hoping (and also knowing) there will be a life after Cancer. At the moment I feel like I am in between two lives, two realities, and two ways of being. I am looking forward to the day when I can settle in to this new reality and start really owning it.

I realize in the next few months, my double takes may become triple takes and I will continue to be puzzled by the person staring back at me. I just hope I will learn to start recognizing her and accepting her sooner than later.

Monday, January 17, 2011

Preparing to Meet Chemo

First impressions are everything.
Well maybe not everything- but they are important.
For the past few weeks I have been anticipating my meeting with Chemo. I have been asking around about her, and from what I gather, like Cancer, she's a real bitch.

I've heard she's demanding, self absorbed, and doesn't understand boundaries.  I've also heard she enjoys stripping patients of their femininity and making them feel vulnerable.

Do you blame me for asking around about her? I feel like I have to do my due diligence if she is going to be in town for a while.

Here is what I have been struggling with. If Chemo is coming to visit real soon, how do I genuinely welcome her with open arms when I have heard she is downright nasty?

I woke up this morning thinking about my relationship between Chemo and Cancer both individually and as a group.  I think I am displacing some of my feelings for Cancer on Chemo.  I haven't even met Chemo and I am already being incredibly judgmental.  I have known Cancer for probably 6-7 months and I need to recognize that they are two different entities with two very different purposes.

I recognize that I need to think about Chemo in a different way. Right now Chemo and Cancer feel like a nasty duo that are preparing to take me down.

How do I train myself to see Chemo as my ally instead of my opponent?

The weeks of anticipation leading up to her visit, has caused me to think a great deal about her arrival. I am so scared of what she will do to my body that I haven't been able to spend as much time focusing on the long- term benefit she will bring. I need to start focusing on Chemo as my partner in crime, my warrior, my cure, and not as my competitor.

Like any new relationship I realize understanding Chemo, connecting with her, and eventually trusting her will take time. In the next few days leading up to her visit, I plan to do some soul searching so I can give her the welcome party she truly deserves.

Saturday, January 15, 2011

Learning to Embrace Difference

My entire life I have always been hard to label. In some ways I believe who I was in High School is partially representative of who I am today. Granted, I am no longer wearing head to toe J-Crew suits, body piercings or what my friends called Dr. Evil Shirts- but I recognize there are still some similarities.

In High School I never really fit anywhere. I was never cool, but never full on nerdy. I was not a theatre or music star, but I had my moments. I was never a top athlete, but was good enough.  I was never in all honors classes, but I was used to excelling and I loved learning.
I was and am a floater. Hard to categorize, easily malleable, and a friend to many. I easily moved from the scrounge where the alternative kids hung out, to the back two tables in the cafeteria where the athletes and high school hotties ate lunch.  In truth, my favorite place was always with my childhood friends who are still my nearest and dearest.

I floated in and out because I never wanted to be categorized. I loved a lot of things, and wasn't willing to fully commit to being a certain way. Maybe I was unique, different, or one could argue a total weirdo.

When graduation came, I knew I couldn't take the more logical and perhaps more comfortable route. I chose to break free from the U.S. and head to land of French Canadians for some culture and education. Choosing to go to school at Mcgill in Montreal was hands down the best decision I have made in  the past 15 years (thank you Liza Behles for your strong recommendation- I would not have chosen to go there without your guidance!).  My days in Montreal nourished me in a way I never thought was possible. My interests widened, I had friends from all over the world, and I started to realize very quickly that there was a rich and beautiful life outside of the shtetl where I grew up in Chicago. My hunger for learning and traveling grew exponentially, and I have explored many parts of the world as a result.  In college I had friends from traditional Moroccan Jewish backgrounds, to the slums of Toronto. Some were privileged children of diplomats, and others were from broken homes. McGill was perfect for me because there was no real Greek scene but rather a club scene based on one's intersts. I was peripherally involved in many clubs ( from Hillel to social action to the Outdoors Club). I didn't have to be one way or the other in Montreal. This was a city where difference was celebrated, and I flourished as a result.    

Fortunately or unfortunately, my Cancer is also different. She has appropriately modeled herself after me- and frankly I don't like it. They say copying is the ultimate form of flattery- in this case, I wish she would just leave me alone. 

Yesterday I learned that I do not have a definitive diagnosis. I am currently have what they call Intermediate Hodgkins also known as grey-zone Hodgkins. In 2008 they reclassified Hodgkin's into (straight up Hodgkins), Non-Hodgkins, and Intermediate Hodgkins.

Once again I am somewhere in between.

On Friday, my oncologist and 10 other of his colleagues which consist of surgeons, oncologists, pathologists, my fertility navigator and social worker, reviewed my case top to bottom.

This week I had a pulmonary function test, maga exam, chest x-ray, full body CT, and a bone marrow biopsy.  The results from these tests help to paint a bigger picture of what is going on in my body. Thank G-d, my bone marrow biopsy came back negative. I don't have cancer in my bones which would indicate that my Cancer was much more advanced than they originally anticipated. I also according to the CT scan have no cancer below my diaphragm- hallelujah!!!!!!!!!!!

I was excited- notably excited- jumping up and down excited. But- this all changed when I learned the biopsy from my neck is being further and further examined. Every time they do what is called a staining of my cells, they are learning more about the non-Hodgkins that lives inside me.

I spoke with Dr. Gordon's nurse and asked her flat out- "How rare is my disorder?". She answered- "It's rare". I then asked, "Has anyone been treated at Northwestern with this disease?", she replied " No".

Ok- I get it- I know I am different- but in this circumstance- why cant I just be plain vanilla? I don't want to be different, I don't want to be unique- I just want to be average.
I called Dr. Gordon in tears- i felt like I was back at the beginning. How could I not have an official diagnosis? What did this all mean? 

Dr. Gordon has this incredible ability to calm me down. He spoke to me honestly, candidly and in a way that I could understand. 

Here's the deal- there are other people that have had my disease ( my rare and unusual disease) but- they were never classified as such because its a new diagnosis. Because this is a new diagnosis- there is not one preferred type of treatment. If my stains show up as indicating more non-Hodgkin's features, I will be treated with a very different chemo regimen called Epoch and they will add Ritixun. to target my non-Hodgkins presentation. Epoch requires 4 days of hospitalization, a pick line, and treatments once every three weeks. Eventually - if preferred, treatments can be done in the comfort of one's home. I will still require 6 cycles ( or 6 months of treatment).  If my stains come back indicating more Hodgkin's, then we will resume with the anticipated ABVD + Rituxin regimen which is outpatient and occurs every two weeks.

There's more.

For the past few months I have had headaches that have gotten worse. I wake up with them, go to bed with them.  Times when I am headache free are few and far between. Apparently the headaches I am having every day have nothing to do with Cancer. Granted they could be stress or tension headaches but this symptom is not typically presented with Hodgkins' patients. Joy.

I am scheduled for a brain CT on Monday or Tuesday to make sure there isn't anything else going on. 

I was once again on information overload. I should also note that I am incredibly hormonal from the fertility drugs that seem to be working, and have given me a nice little temporary gut to boot. 

For the next few days I have to learn to be o.k with not knowing. I also desperately need to embrace my difference, and learn to trust the process. I can't expect to learn everything about intermediate Hodgkins in 3 days. There is no way for me to anticipate what my scans will yield and what the final verdict will be.  Part of me feels that by letting my doctors do the heavy lifting, I am thereby surrendering. I need to somehow reframe how I feel about this or the process of healing is going to be that much harder.

In the past 29 years, my difference has been a blessing. I hope and pray, that my rare, unique, and newly classifiable Cancer similarly proves to be a gift.  

Wednesday, January 12, 2011

The Importance of Sleep

Today was one of the harder days I have had in the past few weeks. Everything looked and felt different because I barely slept.  I am noticing a trend that I have a hard time coming off of drugs after surgical procedures. This has happened twice now with both the lymph node and bone marrow biopsies. After both procedures, I had terrible night sleeps.

When you have Cancer sleep can be everything. Before Cancer, I was used to running on 6-7 hours of sleep ( 8 on a great day). I have never been a huge sleeper the way some of my closest friends have been. I was always known for going to bed on the earlier side, and waking up at the crack of dawn to start my day. I love the mornings, and always enjoy getting a head start before the rest of the world wakes up. I have been this way since I was 10 - and not much has changed since.

Since Cancer, I find I need a lot more sleep and I feel a lot less rested. Now if I don't get 7-8 hours minimum I am in bad shape. Last night I slept 3-4 hours, and woke up with a dull aching pain in my tush.

Poor little tush!!!!

I was a complete wreck today.  My perspective was notably different and I hated it. I started to feel like a voodoo doll, being constantly poked and prodded. I began focusing on all the bruising on my arms from the weeks of giving blood, taking injections and being hooked up to an iv.  I looked and felt like a heroin addict- complete with sunken eyes and track marks.

If you were to look closely at my belly, you would notice that I have needle marks all over the area below my navel. Every night after a long day at the hospital I have to give myself shots for my upcoming egg harvest.  Psychologically its tough to inject myself after a long day of feeling poked and prodded.

I felt like I had the weight of the world on my shoulders today. I was beaten down and worn out.

After an ultra sound, meeting with a dietician, social worker, CT scan- I came home, ate a chocolate chip cookie, and drifted off to dreamland.

I woke up from my nap, still symptomatic, but mentally was in a very different state.

Cancer had her way with me this morning. She took advantage of the fact that I wasn't rested, and preyed upon my insecurities, heightened my senses, and started to make me feel sorry for myself. This afternoon when I woke up, I still had the headache ( and the tush ache) but the world looked different. Cancer seemed more manageable this afternoon, and less powerful.

I am realizing that sleep not only is physically necessary but is the best medicine for me mentally.

I was told by a friend that beating Cancer is 70% mental, and 30% physical. Now that I am slowly learning her tricks, I will make sleep ( and beating her ass) a priority.

Tomorrow's a new day-until then- dreamland here I come.

Tuesday, January 11, 2011

In Order to Progress You May Need to Regress

Biggie came into my life a few days ago, and I have grown to really truly love him.
Biggie- is a nickname for the childhood character we all know and love- Big Bird. Yes, I am officially coming out and telling you that I am in love with a stuffed animal.

I never was big on stuffed animals growing up. The idea of sleeping with them kind of weirded me out. But now, at the age of 29,I find myself incredibly affectionate towards that handsome bird.

I brought Biggie around with me to all my appointments. I wasnt embarrased, but rather toted him along as if it was completely normal. Why shouldn't a scared Cancer patient be allowed to bring ( and maybe even show off) her small bundle of joy?  I may have talked to him a few times today, and definitely gave him some tight squeezes during the tougher moments. Biggie joined me every step of the way, through the Maga test, Chest X-Ray, Surgeon Post Op Exam, and he even cuddled with me on the table during my bone marrow sample. As Dr. V slowly and methodically drew marrow from both sides of my hip, Biggie was there.  I dont think I could have gotten through this procedure without him ( and of course a high dose of adivan and local anethestic.)

I have been worried about the bone marrow procedure for weeks. In all seriousness this scared me more than the start of chemo. I think the visual of knowing that someone would be drilling a very long needle into my bone(which cant be numbed) terrified me. I also was aware that he would be carefully navigating a web of nerves that he could potentially hit in the process of aspiration. The anticipation of the procedure had kept me up at night for weeks. 

I am proud to say that Biggie and I made it through the procedure. With three big bandages on my tush, I walked out of there with my head high, unsure of what all the hype was about. I have heard from others that its the most painful experience they have ever gone through. For me- it was a 3 out of 10. Breaking my elbow in 7th grade the week before my bat-mitzvah was easily more painful ( both physically and emotionally).

Now that this is over, I started thinking about how important it is to allow yourself to regress in order to progress.

The past three weeks I have slowly been accepting the fact that I will need to rely on others to care for me, and that my independence is going to be somewhat compromised. In some ways I feel like a child, having to rely on my parents, Marc, Neely, and my friends to look after me in this time of need. As someone who is used to giving, it is hard to feel like I am constantly taking. I am slowly learning that now is the time to be selfish, to lean on those close to me who are able to lift me up and cheer me on during this fight.

Monday, January 10, 2011

Learning to Navigate the System

Today I thanked Columbia University's School of Social Work for my expensive designer MSW degree. I relied on my training to navigate through the bearacrtaic health care system, and rested heavily on my familiartity with cognitive behavioral therapy to get through some very difficult situations.

I woke up at 6am to go for my first ultrasound since I started fertility treatments. Being overeager ( and yes anal) I got to Northwestern 10 minutes before they opened officially at 7am. I got into the elevator, pressed floor 14, and was trapped.  I was in an enclosed space for what felt like an eternity with another man around my age who was just as anxious and bewildered.

I closed my eyes and breathed. Slowly, concentrating on my breath, telling myself that I would get out and that I would need to calm myself down in order to do so. A minute later I pressed another button that magically relieved us of what could have been a tandem panic attack!

I ran out of the elevator, and again took another deep breath. This time I took the escalators up to the third floor to see if maybe there was a problem with the elevators in the lobby. I got into another elevator, only to be trapped again. This time, I felt like a pro- I knew exactly how to get out and maybe more importantly manage my anxiety of being stuck.

I managed to take an elevator half way to my destination only to then be forced into taking the stairs the rest of the way. Finally I arrived at the 14th floor, but i was unable to enter! After walking up flights of stairs, I was forced to walk down 14 flights and start over.

I am not looking for these metaphors but they seem to be constantly emerging. Today, I felt helpless, anxious, and stuck. By training myself to breath, and slowly walk myself through the options, I was able to manage my anxiety.  I hope to rely on these tools in the days to come.

Ethan Zohn, the winner of Surivivor Season 3, and more notably a Survivor of Hodgkins Stage 2b CD-20 (my exact cancer) has become my angel. Jonny Immerman ( who is a tremendous force and a g-d send) helped connect the two of us a few days ago. Since then, Ethan has been there walking me through every step of this process, coaching me, and helping  me make sense of this crazy Cancer train. Ethan's journey with Hodgkins was nothing short of a marathon. His cancer came back three months later and he endured an extensive course of treatment. His recovery made me think of my hike up to the 14th floor, only to fall down the same flight of stairs and start over from scratch. I hope to learn from Ethan how he managed to fall down and continue to get up again and again.

I have questioned my desire to go public with my disease- because in many ways I am a very private person. My fb profile may show you otherwise- but in general issues relating to my family, health, and love, I have been very protective of. I have found in the last three weeks, that by exposing my illness I feel that I am giving Cancer the finger. By being private about Cancer- made me feel like I was playing into exactly what she wanted. I am not  I am not ashamed that I have Cancer. I am not ashamed to show you that I am scared. And I am not ashamed to share with you the joy that I am finding in living day to day- moment to moment.

Sunday, January 9, 2011

Learning to be in the Passenger Seat

After rescheduling 5 times, Marc and I finally were able to go on a 30 minute chopper ride around Chicago. It was absolutely breathtaking. It was a balmy 30 degrees, clear skies, and the sun was shining bright. I kept thinking in my head how this ride was really a metaphor for my relationship with Cancer.

Maybe this desire to regain control is not exactly the right approach. For the past three weeks I have been desperatly trying to find ways to navigate the world around me- which feels foreign and no longer familiar. I have tried to become acquainted with this body and she continuously rejects my offers to get close to her. While I can schedule appointments, reseach the disorder, and be proactive in utlizing my resources, I am quickly realizing that this does not satiate my desire for control. I need to come to terms with the fact that I do not have the control over my body, over my day, over my week, or even month the way I used to.

A friend of mine from Birch Trail Camp for Girls camp recently reemerged in my life a few weeks ago when she learned of the diagnosis. She herself is a Hodgkins stage 2 survivor who was recently married and is living what I can tell from facebook a very full life.  She wrote me yesterday about this need for control and she told me how she had to learn the hard way that this wasnt really an option.  She wrote "instead of being a coach, why not try being a player".

I need to learn how to do this. I need to learn to trust my doctors, to trust the process, to trust what is happening to my body. I need to trust that I am physically and emotionally prepared for this ( which I do whole heartedly believe) but I also need to trust that I am going to be constanly tested.

Today Marc and I relinquished control by putting our lives in the pilot's hands. We trusted he would protect us, and safetly deliver us home.

Today I was a passenger or maybe a player. Tomorrow I hope to remember what that felt like.

Saturday, January 8, 2011

Is it Wrong to Like My Wig More Than My Real Hair?

I feel like in some way I am cheating by writing this- but- 
I think i prefer my wig to my own hair.

I tried it on today- and I didn't want to take it off. Its the length I always dreamed of, the thickness I always wanted, and the texture feels exactly like mine.

I thought this was supposed to be traumatic today- I was bracing for a slight meltdown in the chair- but strangely enough- I fell in love.

Ok its still a wig- and granted I haven't shaved my hair yet which will be a whole new set of challenges- but today I actually felt pretty, I felt like a woman, and I felt empowered.

I haven't yet decided when I am shaving my head- I may choose to do it before Chemo begins on January 26th or early February before I start seeing signs of hair loss. Either way- the idea of being bald and wearing a wig feels a hell of a lot less scary today than it did yesterday.

Looking forward to whiping my hair back and forth like Willow Smith.

I Got 99 Problems but a Wig Aint One!

Inspiration for today's wig shopping
I whip my hair....

Thursday, January 6, 2011

Leo Gordon- The Man With the Plan

January 6th, 2010- After a 16 days of enduring what was no doubt greatest emotional challenge of my life, we finally got some answers.  I was at the hospital from 11:00 am-6:30 p.m. learning in detail about my illness, prognosis and plan of action.

 Starting at 1:30 I was seen by Dr. Leo Gordon's team of fellows, nurses and his esteemed Social Worker. She happens to be my age and a Hodgkins survivor. I was initially referred to her through  Jonny Immerman. By coincidence she was assigned to my case before Jonny even connected the two of us.  I first met with her and liked her right away. She spoke in calming and soothing tones, and I felt immediately comfortable letting out a good deep cry.  Once I got that out of my system I was quickly shuffled into an exam room with Dr. Gordon's fellow.  The fellow took an extensive medical history, did a physical exam where he felt my lymph nodes, and then finished by telling me how tremendous of a doctor Leo Gordon is.

I finally felt safe for the first time in 2.5 weeks. Without meeting Dr. Gordon I already felt that I was being examined and treated with the kind of care I needed.

Dr. Gordon came in and I immediately felt a strong repore with him. He looked a bit younger than my father, had a warm and calm manner, and he was incredibly thorough.  
Without going into every detail- here is the cliffs notes version.

I have been diagnosed with Stage 2, atypical, unfavorable Hodgkin's. This means that my tumors exist above the diaphragm predominately in my neck and chest.  The largest tumor is 8 cm and there are a few of them which is why I am not considered to have Stage One. My cancer is called unfavorable because I have symptoms. This does not necessarily impact my prognosis it just means my presentation is different. And finally my Cancer is atypical because they found a protein in my biopsy that they find in non-Hodgkin's Lymphoma. I have the CD-20 protein which will need to be attacked by a seperate drug called Rituxin.  

I am starting Chemotherapy on January 26th for at least 6 months. I will be in the hospital for treatment every first day and 15th day for 3-4 hours. The first time I receive Chemo I will need to be in the hospital for 7-8 hours.  My course of treatment will be determined by my 2nd PET Scan which will occur 2 months after my first treatment. They want to make sure the Cancer is dramatically being reduced. If it is resistant they will have to figure out another game plan.

Admittedly when I left Dr. Gordon's office I was a bit bummed that I didn't have straight up Hodgkins. However in speaking to more health care professionals I have learned that in reality my diagnosis is somewhat more complete than others. 10 years ago they didn't know about the CD-20 protein and would have merely treated me with the regular Hodgkins regimen. Now that they know more i wll be treated not necessarily more aggressively but more thoroughly.

During the conversation with Dr. Gordon he looked me deep in the eyes and said, "Jenna I will realistically cure you of this- you have a 95% shot."

I realize that I am in for a very difficult road ahead-one that is going to test my physical and mental strength on a daily basis. While I am nervous to venture into the unknown, I feel ready for the challenge. I am counting down the days before I begin the fight of my life.

Wednesday, January 5, 2011

Questions for Dr. Leo Gordon- Also Known As The Man Who Will Save My Life

In anticipation of tomorrow's meeting I have compiled a list of questions that I hope will help provide insight into my illness.

1.    Type, Stage, Prognosis?
     How fast moving is this cancer? If we wait 2 weeks am I putting myself at risk?
     How long have I been walking around with this?
     What is the average length of time for treatment?
     When do you determine when to radiate? What are the long term affects of radiation?
     What is the treatment regimen? What is the format? 1 week on, 2 weeks off?
     How will the Chemo regimen that you put me on in your opinion affect my fertility?
     Do you want me to have a port?
     Will I have a bone marrow biopsy? Can I be put to sleep for this procedure?
10.  What other surgical procedures if any do you anticipate me having?
 What are the side effects I can expect to experience from treatment?
 How does chemo affect my immune system? Will I need to avoid public spaces? Are there certain activities I need to abstain from?
Does Chemo affect your libido? Are there sexual side effects I should be aware of. Are these temporary or permanent?
What can I do now to help ease my symptoms? Headaches/fatigue/weakness?
Will chemo affect my symptoms? Will I get relief from them through treatment?
How much sleep should I be getting?
Can I still work?
Should I be exercising?
Are there foods I should be eating or avoiding?
Should I be abstaining from alcohol?
When do most patients lose their hair?
Do most shave before they start chemo?
What are follow up visits like?
What types of procedures are required during follow-ups
How often do I get a pet scan
Are there other tests or procedures to tell if treatment is working?
What research has been done on how this is contracted?
Is Neely at risk for getting this?
What is the rate of reoccurrence? How likely am I to develop another form of Cancer?
What types of support groups are offered for patients, family, friends?
Will I ever be able to donate blood?
Will I ever be able to donate eggs?

      What am I missing??? 
      Also- can someone explain to me how exactly I got on this crazy Cancer train????

Poor Little Uvula

Last night was rough. Bed ridden with nausea for 5 hours, I had to bail out of dinner plans with my parents and close friends Kasey and Shosh.  I  spent the night in my bed, nauseous and in agony. I was a terrible host!  I woke up this morning having difficulty breathing and talking. I clearly had an obstruction in the back of my throat that felt as if it was getting worse. When I looked in the mirror I noticed that my uvula ( the pretty little dangling piece that hangs in the back of your throat) was stretched out and hitting the back of my tongue. I knew in my heart of hearts that this was not a normal post- surgery symptom. I called my surgeon frantic and waited for 4 hours for him to respond. I called him three times starting at 7am, 9am and then again at 11am. When I had no luck getting through I touched based with my Fertility Navigator who serves as a liaison between the Onco-Fertiity Clinic and my Oncologist. She immediately paged my Oncologist who demanded that I head to the ER.  

An hour later I was flat on my back in a hospital gown with 4 doctors peering into my throat.  As I had thought, when the breathing tube was inserted they slit my Uvula causing swelling and what appeared to be an ulcer.  Because I am about to start Fertility treatments and Chemo the doctors were hesitant to prescribe anything that would potentially interfere with my treatment. The normal course of action is to perscribe steroids or a spray to help numb the area and reduced the swelling. Unfortunately in my case I would have to grin and bare it.

After learning that my nicked Uvula would heal after a number of days, the doctors ordered an ENT to conduct a procedure where they inserted a camera through my nose into the back of my throat. The ENT was able to conlcude that I did not have any significant damage to my vocal chords- which was a relief!

An hour later I was sent home to recuperate. Lets hope and pray that my poor little mangled Uvula is the only hiccup in my road to recovery and killing this Cancer in the Butt!

Tuesday, January 4, 2011

High as a Kite

It's January 3rd and I survived my first surgical procedure. Today Dr. de Hoyo made an incision in my neck in order to biopsy one of the larger tumors in my lymph nodes.  After the surgery, Dr. de Hoyo reiterated that he believes I have Hodgkin's Stage One or Two. The diagnosis will not be confirmed until the biopsy is read by a pathologist which hopefully will be on Thursday morning.  

From start to finish my surgery/recovery lasted around 8 hours. I was sent home the same day and was welcomed by a crew of childhood friends who came with crayons, plato, gifts and music in tow.

Sam Barsh, a dear friend of mine from high school stayed up all night working on an original rap entitled "99 problems but a wig aint  one". Not only was the song genius- and could easily be the theme song for the American Cancer Society- but he had a way of taking something that feels very scary and turning it into an act of empowerment. I have had a hard time with the fact that I will have to shave my head in 2-3 weeks. The idea of cutting my hair, and stripping myself of my femininity is terrifying. I have spent years growing my hair out to reach the middle of my back because it has made me feel womanly.  I am scared of looking at myself in the mirror and not recognizing myself. I already don't recognize this body, and I am scared to not be able to recognize my face.

Without telling Sam my fears, he knew them. His song reminded me that I had choices, and that I could have fun with changing my look. I am meeting with 2 men who specialize in creating wigs for Cancer patients this weekend. I am nervous about facing this reality but I know with time I will start to own this new look of mine and somehow regain control.