It's been a long day.

My first trip to the U of C for my trial was tiring. It snowed today which means that a normal snapping turtle walking aimlessly along the Eisenhower Expressway could have passed me up. My appt was at noon. I checked in and was sent to the lab for a blood test. Veins had lost their tude today so the 5 vials of blood was a breeze! Then it was off to the Heart lab. I had an EKG and an echo cardio gram. My blood pressure was good 112/60 and the test required that I lie there and relax. Who can ask for more? I was actually amazed. I barely waited for any test. They took me immediately at the blood lab, immediately at the Heart lab and I didn't have to wait in line for 30 minutes waiting for the Valet to park my car. After my battery of tests, I went back to Oncology to see the nurse and Dr. in charge of the clinical trial. It's been almost 3 years since my diagnosis and the word "Oncology" is still as daunting as it was on Day 1. As I waited in line to check in, I still couldn't believe that I was standing anywhere with a sign that dared insinuate I have rouge cancer cells. The waiting room was completely full. One woman was knitting. Definitely a sign that my no wait day was about to end ....and it did. After 90 minutes, I tapped the desk and asked if they were absolutely sure they let the Dr. know I was here.

I always look around the waiting room at the people that are occupying space with me. Most are old. Some look sick. Some don't. I feel out of place. I'm young and sometimes I catch an older person staring at me too. Today the waiting room was packed and people spilled out into the hallway to sit on folding chairs. I wonder what their stories are. It's impossible to tell which are there with Sarcomas. One Sarcoma patient told me that what we with rare cancer feel is "Cancer Envy." It's when we with a rare disease with only limited therapies available to us, most experimental and a kind of cancer that has no awareness, very little research funding, walk into a waiting room full of women with breast cancer and are jealous that they have options and awareness and little pink ribbons, and every single grocery product in October has a pink label. They have the Susan G Komen foundation and the Y ME breast cancer run. We Sarcoma patients get blank stares and travel the US trying to find one knowledgeable Oncologist who cares and knows anything about Sarcomas. We fight for places in Clinical trials. We don't look forward to "remission." We look forward to "Stability." I noticed I suffered from cancer envy the first time I returned to my Thursday night bowling league and participated in "Bowl for the Cure." The USBC has a campaign to raise money for ...you guessed it "breast cancer." When I participated in Relay for Life, pink shirts lined the track. Besides me, I ran into ONE Sarcoma patient besides me and from what I have been told that was rare. NOt that breast cancer isn't a rotten to the core disease that needs to be anihilated. NOt that I haven't had a family member who died from Breast cancer. But, caught early breast cancer is curable. There are pages and pages and pages of therapies. There are scads and scads of Oncologists and in every cancer center, every Dr. knows about Breast cancer. Not so with Sarcoma. When my lung biopsy came back positive for sarcoma cells, my Oncologist had literally NO idea what to do with me. He had no idea which chemos worked. He had no experience with the disease. All he could do was ask around and ask other Oncologists if they had a name of anyone in the Chicago area who treated the disease. When you live in an urban area as I do, there may be one. If you live in the sticks, you travel for hours to find your specialist.
So here I am in a clinical trial for Brivanib. I refused the results of my scan two days ago and decided mentally, I'd be better off not knowing. But, I did consent to know the results of my blood tests. The Dr. said my blood is absolutely perfect and she said, I looked great. As expected, my Blood pressure and temperature rose the minute I walked in the door but my body does funny things when I am anxious.

Next week, I return for the drug. I check in at 7:45am next Wed and I am to be there alllllllllll day. I guess I need to pack a lunch. There is a cafeteria but after 10 days at the hospital over there, I know for a fact that the food is really really awful and the University of Chicago is not close to anything except really big houses.

So much for being kicked out of the study due to NED.