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.
