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.

13 comments:

James Kovacs said...

That is so heart-wrenching, Wendy. I hope that treatment is going well and that you'll have your life back soon. Stay strong.

Dave Rogers said...

My prayers/positive thoughts go out to you and your family in this difficult time.

Anonymous said...

Don't stop writing here, please.

Yuvilio said...

Thanks for the jolt of perspective. May you be rewarded for it well.

Dimitrios Stassinopoulos said...

Be Strong and Fight it. I wish you all the best.

alex talamantes said...

i really hope you get well

Karl Shifflett said...

Wendy,

My heart goes out to you. I'm a cancer survivor myself. April 2010 was my 4th year in remission.

You can read my story here:
http://www.caringbridge.org/visit/karlshifflett

Caring Bridge is a nice place to record your thoughts and messages; additionally people can leave you messages.

Wendy, never give up, ever. Never give the cancer a moment of satisfaction. I had stage 4 cancer, 30-40% chance of making it and they told me I also had TB.

Attitude is critical, obeying the doctors, not taking any chances when your immune system is compromised. I basically stayed at home for the entire time, except work, grocery store and my doctor appointments. I had some bad days, but they got better.

One of my survival techniques was to drastly lower my own bar for sucess. If my dishes and laundry were taken care of, I considered that an awesome day and gave myself an A+. Everything after that was extra credit. This helped to bring my stress level about the unimportant way down.

May you know the blessing, comfort and emotional strength of the Lord.

Never give up,

Karl

Anonymous said...

Wendy you are a very strong lady, please be strong, I know saying is easy but please keep fighting and come out as a winner. All the very best.

Anonymous said...

I found your blog searching for agile stuff.
I wish you get back to what you love most the soonest.

VR

Anonymous said...

Get well soon. God bless you.

Le Duc Anh said...

How are you these days? Bless you! ;)

suhaas said...

You will get everything back to the way it was.

suhaas said...

May god and his blessings be always with you. Find strength and stay strong. Our prayers and God's grace will help you get well in no time.

Bless you.