Thursday, November 11, 2010

Tuesday, August 31, 2010

A year ago today, I began my life as a cancer patient. It sucked. And I'm glad its over.

Its been a long time since I posted... I am happy to report that I am cancer free and have completed treatment! It was a really long and difficult journey. The English language is limited in its ability to describe it. And I'd rather not relive it, at least not now.

My hair is growing in and my energy improves everyday! I am able to spend my days with my family and have been cherishing every moment.

I thank everyone for their support and encouragement this past year!

Wednesday, June 2, 2010

Finding Treatment

My ENT recommended a surgeon in the city and got me an appointment with him right away.

I was glad to have his help, but it didn't feel right going to a surgeon instead of seeing an expert in rhabdomyosarcoma.

Being so close to NYC, I felt obligated to search Sloan Kettering. There was a pediatric team dedicated to sarcoma and a doctor, Leonard Wexler, had Rhabdo listed in his biography.

I wasn't sure if they took adult patients, but I figured I had to try. I made the call to Dr Wexler's office and his assistant was very helpful. He told me they would treat me and needed my pathology.

I had to make a decision -- go to the surgeon or bring the pathology to Sloan.

I went with Dr. Wexler. It seemed to make more sense to find out more about this cancer than to jump into surgery.

Two days later I was at Sloan. Scheduled for scans and consultations.

The first thing Wexler told me was that my cancer is "curable." The next thing he told me is that Kaylee was safe from catching it from me when I was pregnant or through breastfeeding.

Then we went onto the more difficult parts.

I had to wean Kaylee immediately. This broke my heart.

I was at stage 3 because it had spread to my lymph nodes.

The scheduled scans would tell us if it had spread to distant locations.

I was diagnosed with embryonal rhabdo. Dr. Wexler was pretty sure it was Aveolar -- a more aggressive form.

I also had to have my bone marrow tested and a spinal tap. They would perform these when my mediport was placed.

We then went onto the treatment.

Surgery would be unlikely.

Chemo would be high dose.

I had two options for treatment. Standard VAC therapy (3 chemo drugs) or a clinical trial of 7 drugs.

Both were a year long and both would make me very ill.

One had a much better cure rate.

The standard treatment was available at the clinic not far from my house.

The clinical trial was only available at Sloan in NYC, about 1.5 hours from my house.

It would mean being separated from my family for most of the year.

It would be a nightmare in logistics.

It also meant a better chance of a cure.

So I decided to give up a year of my life to save the rest of it.

It took hours of crying to come to that decision.

Tuesday, January 19, 2010

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.