My (Cancer) Story -- the diagnosis

On Friday August 14, 2009 I found out I had cancer.

I went to the ENT just days before for a persistent sinus infection, and cancer was the last thing on my mind.

One look in my nose and the ENT changed my life.

Well, cancer changed my life. The ENT happened to find it.

It was a Tuesday. I told my husband that morning I had never been so happy to go to the doctor. I had been dealing with a chronic sinus infection since June and my health was declining. I could barely breathe through my nose, my sleep was disrupted, and I could no longer smell.

There were other symptoms I noticed after I was diagnosed. Over the past few months I had lost weight and had occasional night sweats. In late winter, I had eye pain. In the spring, I had persistent sinus headaches.

Upon arriving at the ENT we discussed my symptoms and then went into the examination room. One look in my nose and his reaction was grim. He told me I had a polyp in my nose and said the word "cancer." Despite telling me cancerous growths in the sinuses were very rare, I was scared.

The doctor immediately sent me for a CT scan and told me to bring the slides back to the office that afternoon. He assured me it was just to alleviate any concerns and that in 35 years of practice he had only seen 3 malignancies in the sinuses.

I told him it doesn't matter how rare something is when it happens to you. He agreed.

By noon I had the CT scan.

I brought the scans back to the office and the receptionist told me he would call back.

Twenty minutes later my cell phone rang.

"The doctor would like you to come back to the office"

"Oh my god! Can't he talk to me on the phone?" The woman said hold on.

"Hi Wendy." The doctor was on the line.

"How does it look?"

"Your bones look good."

"What do you mean 'my bones look good?!!' I wanted to hear 'its not cancer.'"

I'm not really sure what he said after that. Something like it doesn't look like cancer, but the growth is very big and needs to be removed quickly. He asked me to bring my husband into the office so we can talk about the surgery.

Back to his office for the 3rd time that day.

In the examination room my CT scan was up on the wall. It was clear that my left sinuses were completely filled with something.

The doctor went on to say that they would do surgery. He said they would first do a biopsy and as long as everything came out okay they would proceed with surgery to remove the growth.

The biopsy would take 15 minutes. If they continued with the surgery it would take a few hours.

As I left the room, I picked up Kaylee, who had been happily playing. "There is always life." I said.

"Yes, there is." The doctor's reply made my stomach ache.

I spent the next day doing pre-surgical testing. Blood tests, chest xray and a special CT scan that would be used during surgery.

Thursday was a blur of anxiety, fear and playing with Kaylee. She really helped me get through the day.

That night I found myself thinking of a girl I hadn't seen since high school. I found out several weeks later she had a rare pediatric cancer when she was in college called Ewing's Sarcoma.

She has since become a source of support and inspiration.

By some magic, I slept well.

The next morning I woke up with a painful, swollen lymph node in my neck.

At that moment, I knew it was cancer.

I knew it had spread.

I kept this information to myself -- no reason to worry my husband and mother who accompanied me to the hospital. I may have been wrong.

I hoped I was wrong.

At the hospital I was started on IV fluids and met with the anesthesiologist and my ENT.

A few moments later I was getting wheeled to the operating room. As I said goodbye to my family I started tearing as I knew everything would be different the next time I saw them.

I awoke from surgery what seemed like moments later. My husband and mother were at my side.

My first question was to find out the time.

It was only an hour later.

I immediately started crying and my doctor told me it was malignant.

That moment changed everything. Even though I "knew" it was cancer, I hoped I was fine.

They had a nurse come talk to me who was a cancer survivor. At that point I had no interest in hearing about someone else's cancer, it had nothing to do with mine.

Upon arriving home, my husband told me they would have the diagnosis on Monday. It would be lymphoma or a rare pediatric cancer.

The weekend was difficult. I felt sick and weak from surgery. The mood was grim.

It was Kaylee's first birthday on Sunday. As she opened her gifts, I hoped I would be around for Christmas. I feared I would not be around for her next birthday.

I broke down, crying.

The day stretched on.

I had experienced cancer before. My father fought leukemia (AML) for 1.5 years before passing on. My sister's mother in law only had a few months with ovarian cancer.

My worst fear had become my reality.

I had cancer and it could kill me.

I went back to the ENT the next day. The final pathology had not come in yet. The doctor removed 6 feet of gauze packing from my nose.

He was going to call us as soon as he found out the results.

Matt and I went to breakfast.

Shortly after our meal the cell phone rang. Matt answered. I didn't feel up to the call.

He walked out of the restaurant to hear better. I waiting on pins. It seemed like hours before he came back.

He returned to the table and told me it was the rare pediatric cancer. Neither of us could remember the name -- rhabdo something was what we called it.

Believe it or not, I felt special. I was smiling cause I had this rare cancer; only 20 or so adults get it a year. I was always a bit unique, so why not have the odd cancer?

It was my mind's way of coping with the situation. I'm always happy to feel happy.

Matt and I finished our breakfast and went to the hospital to pick up the pathology slides -- we'd need them for the next step in the adventure, seeking treatment.

The ups and downs of it

Kaylee came home on Friday. I had no choice but to run around with her. It was great medicine! I missed her terribly and was so glad to be her #1 go-to person!

Saturday was rough.

Emotionally and physically, Matt and I were drained.

There was a lot of crying, doubt and fear.

It happens on this roller coaster of cancer. Remembering it will pass and I will feel healthy again was more than difficult.

Sunday was a turning point.

I ate well.

I drank a lot of water.

I laughed a lot with good friends.

And I shaved my head!

I feel like Natalie Portman in V for Vendetta.

I also had a great acupressure/reiki/massage session with Vanessa, my sister in law. She found a ginger tea that I love!

I felt reborn in positive energy and spirit.

And just in time, because Sunday night I left my family once again to stay at the RMH and resume treatment.

So, here I am.

I continue on my path of what seems to be most resistance, savoring the good days and pushing through the bad.

First cycle complete

A bunch more to go...

I'm now recuperating at home.

The chemo made me very ill. I'm still feeling it. I have hardly gotten out of bed the last few days.

Every day I'm a little better. I hope to go for a walk today.

Its hard to believe I'm going to go back next week.

But every week done is a week closer to being cured.

This week off has been especially hard because Kaylee has the chicken pox. She has to stay at her Grandma's until she is all better. I haven't seen her in over a week. I am beyond sad.

I hope to see her before my next treatment cycle. Her little hugs, giggles and smiles are the best motivation and cure for this cancer patient.

One week down

After only one week I can breathe out my nose.

I smelled flowers on the street.

Chemo certainly knows how to kill.

Unfortunately it does not distinguish cancer.

But today starts a new week and I'm feeling better.

My body knows how to heal.

Giving up a year of my life

To save the rest of it.

That's what the doctor told me I have to do to cure this cancer.

I have a daughter that will need me in her life, so that is the plan.

I spent the past week at Sloan. Taking tests. Speaking with doctors.

And crying... a lot of crying.

It is a surreal experience. Trying to understand the complicated schedules and make sense of how my family can manage life without mom.

And not just without mom. Life with a cancer patient.

I'll be treated as an outpatient at Sloan on a clinical trial.

My treatments with be 3 week cycles of chemotherapy for about a year. Typically the cycles are 2 weeks of treatment and 1 week of rest. During my week of rest, I will have to go in for tests.

When I have radiation, it will be 6 weeks with no break. This does not change the chemo schedule.

Some treatments are an hour. Some are ten.

I live about 1.5 hours away from Sloan with no traffic.

So every day is 3 hours longer, just for driving. Probably a little more.

3 hours of being stuck in the car and potentially very ill.

My initial reaction was defeatism.

My next reaction was complete and total fear.

I have a daughter and husband who need me. Who love me.

I am determined to make this work.

I will stay in a hotel on the long days.

I will coordinate a schedule of driving with my family and friends. I hope to have enough people to call when I cannot make it to the city and someone will help.

In the event that falls through, I will use a car service. The sustainability of this option is low for its cost and the emotional drain of being alone. I hope it is a rare thing.

I will sleep in my own bed. I will get to see my daughter and husband everyday.

I will remain positive and strong.

This year of my life. The year I had cancer. The year before I was a cancer survivor starts now.

Talk about rare

The morning has been hectic. First, I went to the ENT who did my surgery (and found my lovely growth) to remove the packing in my nose -- 6 feet of guaze!! I feel about 100x better!

My husband, Matt, and I went to breakfast and mid coffee found out I have embryonal rhabdomyosarcoma. A rare childhood cancer. Weird, right?

Living in New York, I am lucky to be close to Sloan Kettering hospital and thankfully they have an oncologist who specializes in this cancer. He happens to be a pediatric oncologist but I'm a little woman, so I should feel at home with the kid size chairs :P

Matt is dropping off the pathology today, and hopefully by my appointment on Wednesday we'll have a plan of action.

wunda's world upsidedown

The last few months I've been battling sinus problems.

First guess was an infection, but the antibiotics did not help. My dr thought I needed a longer rx, but since we weren't sure it was infection, I opted to wait and see. Allergies were also a possibility.

Some days, I felt broken -- though I figured running after Kaylee and getting little sleep were to blame.

I went to an ear, nose and throat dr last Tuesday.

He took one look into my nose and his reaction was distressing. I don't remember exactly, but once you hear cancer, you don't hear much else.

He said the chances were small, but we should do testing quickly, to alleviate any fear.

That day I had a CT scan. That afternoon he called and brought my husband and I back to the office.

The results were easy enough to see -- the sinus cavities on my left side were filled. He said it looked a lot like an antrochoanal polyp (one side and really big). It could also be a fungal infection... and of course the possibility of cancer was looming in the room.

One thing was definite. It was big and needed to be removed.

Surgery was scheduled for Friday. He would do a biopsy and then depending on the result, stop or remove the benign tissue.

As soon as I woke up from surgery, I asked the time -- one surgery would be longer than the other... It was less than two hours. My mom and husband were by the bed and someone told me it was malignant.

Although my first reaction was "are you sure?" I was calm. The fear of what could be was replaced with reality. Cancer. I was not surprised. I had all week to prepare. I'm sure the drugs from the anesthesia helped me stay calm.

I've known many who have battled cancer.

I lost my father, my husbands aunt, my uncles wife, my grandfather, my sister's mother in law.

I know survivors too -- two uncles, my aunt, a few friends, parents of friends.

What are the chances I would be added to the list? When I was a little girl, I was a bit of a hypochondriac. I was always worried I had cancer. As I got older, my fears subsided.

When I went to the doctor last Tuesday, the last thing on my mind was cancer. I had just given birth and nurse my baby? How could a diseased body support such miracles?

I will know more about a diagnosis on Monday. The weekend is going slow.

I am nursing my daughter as much as I can. The idea of early weaning is heartbreaking. I fear she will grow up without a mother. I am thankful she is only 1 as she will not remember. She may not remember me. I hope I can live on in her through the bonding relationship we've created and the stories and memories people around her hold close.

And of course, I am not calling it quits -- I don't even have a diagnosis, or 2nd opinion. My strategy is the same I used to run a marathon. If I felt tired, in pain or I couldn't go on, I would ask myself, "can you finish the next mile? just up to that next tree? will you be disappointed if you stopped because you know you had it in you to keep going?"

As long as there is a chance (even a fools hope) and I can make it to the next tree, I will. I will come through this a survivor, regardless of my mortality.

I am scared. Writing is an easier form of communication. I say the word cancer with tears in my eyes and a closed throat. I write it with ease. I am thankful for this outlet.