Friday, December 24, 2010

Heavy Petting

In high school my mom asked me if I had engaged in heavy petting as a way of finding out if I had become at all physical with men. At the time I was mortified because it made me think of sex in a very animalistic way.  When I went in for my PET Scan- it was hard for me not to think of this akward conversation and it actually gave me a good laugh. I am finding that humor is critical in fighting and surviving Cancer and in many ways is the best medicine. Nothing has taken my mind off Cancer more than laughing and put-zing around with my close family and friends.

A PET Scan is a way for doctors to get a baseline read of how advanced your Cancer is. The initial PET Scan helps determine what stage or how advanced your Cancer is. The earlier the stage, the better the odds. I was praying long and hard that my Cancer was localized and found early.

Based on the preliminary read ( which took place the following day) I was told that my Cancer was localized in the right side of my neck and chest and that it appeared to be stage one or two!!!!

I tried to contain my excitement but couldn't. I found that knowing that this bitch ( pardon my french) was merely hanging out in one part of my body- made this fight much more manageable. As I have mentioned before in previous posts, it has been hard to fully come to terms with my feelings of betrayal. The idea that I had may have had Cancer throughout my body was paralyzing. However, now knowing that the cancer was caught early and contained - lifted my spirits and helped prepare me for the fight of my life.

Thursday, December 23, 2010

From Reactive to Proactive

I am a planner- I always have been. I schedule my life far in advance, have an active social life, and easily become immersed in my work. For the first time in my life I am learning how to live moment to moment, as opposed to month to month or year to year. I am slowly learning the importance of savoring each moment and coming to the realization that every breath is a gift.  Learning how to live moment to moment is not only counter-intuitive but it is incredibly difficult. 

During the ten days before surgery I decided to take it upon myself to learn everything I could about Hodgkins, the oncologists at Northwestern Hospital's Lurie Cancer Center, Cancer Support Groups- specifically Immerman's Angels, Wigs for Cancer Patients, and Fertility treatments.

It just so happens that Marc's sister, Bonnie Rochman, is a journalist for Time Magazine where she writes about women's health issues. A few months prior, Bonnie wrote an article about a woman with Lymphoma and Ovarian Cancer that decided to freeze their eggs before undergoing Chemotherapy. Many women diagnosed with Lymphoma who go through Chemo end up with a decreased ability to have children- some even become sterile. After reading Bonnie's article and speaking with her at length, I knew that I didnt want my ability to have children to be affected by Cancer. This was the one aspect of my hellish situation that I felt I could regain some control over. 

I quickly learned firsthand how exploring and undergoing fertility treatment before starting Chemotherapy can actually be psychologically beneficial to the patient. It makes the patient think about life after cancer not only for themselves but for their potential children. Bonnie's article Fertility and Cancer: Surviving and Having Kids Too caused me to think about the importance of exploring this option during the downtime before surgery.

The next day I enrolled as a patient in Northwestern Hospital's Onco-Fertility clinic which is a leading research facility for cancer patients. Before I meet with the oncologist on Thursday January 6th I will have already started taking IVF injections that will allow me to harvest my eggs.  Working with the clinic has been the silver lining throughout this whole process. It not only has been a welcomed diversion of sorts, it has allowed me to feel more in control of my body and what is happening to it.  I may not be able to control the Cancer, but I can feel somewhat in control of my ability to one day have children. I found myself experiencing a strength that I had not yet felt throughout this whole process. I found myself not only fighting for my own life but for the lives of my children. I feel incredibly grateful to Bonnie for bringing this to my attention and I am eager to start the process.

Wednesday, December 22, 2010

Gathering Data

On Tuesday December 22nd, I met with Dr. Alberto de Hoyos, an oncological surgeon at Northwestern Hospital who helped better explain my initial diagnosis. I did not realize that that Dr. de Hoyos' office was located on the 21st floor which is the home to the Lurie Cancer Center. When I got off the elevator and saw the large sign on the wall it felt as if someone was screaming "Welcome to Cancer!"I found myself overcome with grief as the reality of my illness started to sink in. 

I saw my parents in the waiting room and I became incredibly tearful. All of us were desperately searching for answers and the wait was emotionally draining.

We eventually met with Dr. de Hoyos and his team of residents. I was examined by Dr. K who felt an enlarged lymph node in my neck ( a node I had actually felt the day I started feeling pain in my back.) Dr. K was exceptionally bright, thorough and surprisingly hopeful. She told me about her work in Bolivia and told me that when I got passed this disease I would have to make a trip there.
This was the first time in 24 hours that I had really thought about life after Cancer. 

Dr. De Hoyos reviewed my CT scan and told me that the scans confirmed that I have Lymphoma. He said based on my symptoms, age, and presentation he believed that there was a 90% chance that I had Hodkins Lymphoma, a disease that typically affects otherwise healthy 18-40 year olds. He couldn't confirm this diagnosis until a biopsy was conducted but based on all the facts he had this was his initial diagnosis.

I was relieved to hear his initial diagnosis because I had read earlier that Hodgkins is a highly curable Cancer. The truth is that if you are going to get Cancer, this is the type of Cancer you want to get.  Young people are often very responsive to Chemotherapy and Radiation and they end up responding quickly to treatments.  I also was relieved to finally have a diagnosis for all the symptoms I had been feeling recently. Prior to my pinched nerve I had been getting sick a lot. I had what seemed like the flu for two weeks, and prior to that had been seeing a doctor nearly once a month for six months for what felt like flu-like symptoms. Prior to the flu, in February, I was hospitalized for what they believed was Viral Meningitis. Other than when I suffered from Gallbladder disease, I hadn't remembered a time I had been so riddled with illness.  My night-sweats, fever, unexpected weight loss and headaches were summed up with this diagnosis.

My surgery was scheduled for January 3rd when Dr. De Hoyos returned from vacation. He reviewed 2 surgical procedures that could occur the day of. Either were going to make an incision in my neck and remove part of the lymp node they were able to feel and access or they would make an incision in my throat and use a scope to remove a tumor in my chest near my heart and lungs.  Dr. De Hoyos also mentioned that they may also need to extract bone marrow to be sure that the cancer has not entered into my bones. It was unclear as to whether he was going to actually perform this procedure on January 3rd.

After explaining the surgery he ordered a Pet Scan which would determine the staging of my Cancer. 

Once we left Dr. De Hoyos office, Marc and my parents felt relieved. I felt overwhelmed. It was too much information and I wanted it to stop.  In some ways I felt that I was on a very fast train, and the rest of the world around me was moving in slow motion.

After returning home, I had a good cry and felt a lot better. I knew I was in good hands and that we were finally on the way to getting answers and getting to the bottom of this.

Tuesday, December 21, 2010

A 6 Month Anniversary Gone South

On December 18th, 2010 Marc and I celebrated our 6 month anniversary. We met at Northwestern Hospital's Cancer Research Young Adult Event appropriately called Summer Loving. At the end of the night, after serious coaxing from my girlfriends, I finally got up the nerve to approach him and deliver a horribly unoriginal pick up line.  Blushing, I shyly approached him and said,  "I am sorry to bother you but you really look familiar." Marc replied, "Are you sure- because frankly I don't recognize you." Luckily the conversation did not end there but rather progressed with incredible ease and comfort.  I eventually left the event with his business card and our relationship started.  

6 months later as Marc and I were about to begin our celebratory "stay-cation" in Chicago, our plans were abruptly halted when my orthopedist Dr. Ellen Casey from the Rehab Institute of Chicago called to review my MRI results from 2 days prior. When she insisted on seeing me asap in her office I knew something was wrong-very wrong.

Dr. Ellen Casey slowly and thoughtfully reviewed my results. Unfortunately what was originally diagnosed as a pinched nerve was actually a large mass in my neck. She ordered an urgent CT scan for 1:00 pm that afternoon and 4 hours later, over dinner at my favorite childhood restaurant Hole in the Wall, I was diagnosed with Cancer.

When my Primary Care Physician delivered the diagnosis I felt completely paralyzed. I told Marc we needed to wrap up the food and get out of the restaurant as soon as possible. 

The nightmare was only just beginning

As soon as we got out of the door I fell to the ground in the parking lot screaming and convulsing. I couldn't catch my breath and I felt as if I was desperately trying to let the cancer escape from my body. We drove home to my parents and my convulsions continued. I entered the house and saw and heard my parents talking to my PCP- hearing the news for the first time.  There faces were blank and all color had left their cheeks.  I quickly jumped into their arms wailing, screaming and sobbing uncontrollably.

The nightmare continued.

I kept asking to be woken up but everyone kept staring at each other speechless and helpless. We had very little information and so our imaginations started to go wild. We sat down at the dinner table, I stared at the untouched food, and I started giving my own eulogy. I told my parents and Marc how much I loved them, and I kept reiterating how much I loved my life.  I finally felt that I was in a place in my life where I was genuinely fulfilled. I was in love with Marc, my family, my friends, my job, and my home. I never thought that 6 months after meeting Marc at Northwestern's Cancer Research Fundraiser that I would end up being a patient.

A day earlier I recalled driving to pick up Marc and I felt this overwhelming sense of happiness. I felt a level of fulfillment and completeness that I had been hoping to one day attain. I felt that I was in an elevated state of being, a feeling I can only pray I will feel again.

Back at the table, I kept repeating to my parents and Marc, that I wasn't ready to die, that now was not my time.

My shock eventually turned to profound grief and utter despair. My screams evolved into tears until my eyes dried up. 

I stared outside at the backyard through the windows in our family room and a flood of childhood memories came back to me. I remembered how my sister Neely and I used to play in the snow for hours. I remembered getting all bundled up to play outside where I would proceed to eat snow when my parents werent looking.  I loved the cool taste coating my throat and even today find myself tempted by its taste.  The snow covered backyard always reminded me of a big cloud that I hoped I could fall into and be enveloped by.

My mind then drifted to the days that were few and far between when I was sick and had to stay home. Every time this happened, my dad would say to me, "Give me the pain, let me take it all away." He would then reach for my hand, hold it, and I would instantly feel better.

On December 20th, 2010- I turned to him again, this time at the age of 29, and said,"Dad I wish you could take my pain away, but this time I know you can't". We fell into each others arms crying and praying for a sense of relief. 

After hours of trying to get our heads around Cancer, I sent an email to close friends updating them. I was so in the moment that I couldn't even think about how my friends would react. I wasnt able to leave my orbit and think about how this news would affect them and those close to them.  I would only learn days later how the news became personalized and how their own worlds were impacted. 

I invited my best friend Kasey over in the hopes she could wake me up from this nightmare. 

My parents opened a few bottles of wine, and for the first time in my life I saw them both drink more than 2 glasses of wine. We tried desperately to numb ourselves but failed miserably. At 1:30 am I eventually crawled into my sisters bed with Marc, and we tried to sleep. I woke up at 3 am in paralyzing fear- wanting to scream but was unable to make a sound. 

Was I going to die?
Was this G-d's intention for me all along?
Have I lived a full life?
Would I fight this and win?
Would I overcome this hurdle and be stronger, better, wiser?

Did I have a choice in this? What role did I have in dealing and combatting my disease?

I had so many questions and virtually no answers.  I found it impossible to identify with a disease that I knew nothing about. Was the cancer everywhere in my body or was it localized? I felt like I had been walking around with a ticking time bomb that was getting ready to go off.

The body that I had known for 29 years was no longer my own. I felt deeply betrayed by my body and was no longer able to identify with her.