Cancer Diary
We Put The Trial in Clinical Trial
Opening statement: I am extremely grateful to be in the clinical trial!
Let me begin at the beginning of our clinical trial journey. One day as I was mindlessly scrolling through Facebook I saw a post written by my daughter’s wedding photographer about a Glioblastoma information session at New York University’s Langone Hospital. (Random, she lives in a small town outside of Lubbock.)
Since I had recently been diagnosed with Glioblastoma, and since my daughter lives in New York, I took a screenshot and sent it to her. A few days later she attended the information session which turned out to be on a different/more specific form of Glioblastoma than I have. After the session she randomly had the opportunity to speak to one of the presenting doctors. Guess what? This doctor specializes in my Glioblastoma and is running a clinical trial. Serendipity, God wink, the universe speaking? The doctor gave my daughter her personal cell phone number and asked her to get in touch.
When we had our first phone conversation with Dr. Miller about the trial we learned that in order to qualify I had to be x number of weeks out from surgery and x number of weeks out from radiation. I met those qualifications. When she asked to gather some basic demographic information and I gave her my date of birth, she commented that I shared a birthday with her mother. Then she said, “I’m saving you a spot.”
We made arrangements to proceed. A Telehealth video conference was scheduled, an appointment was made for my first clinical trial visit, we were on our way. The final hurdle to being accepted was a post radiation MRI. Even though my radiation oncologist cautioned me that an MRI done so soon after radiation could present false readings we went ahead with it in order to get into the trial. I had my MRI done on a Wednesday, jumped through all of the hoops to get images shared with NYU Langone on Thursday, and flew to New York on Friday for a Monday morning appointment to begin the trial.
We landed at LaGuardia airport after a long travel day and I was greeted with multiple messages from Dr. Miller’s office informing me that the MRI scans had not been sent. I soon learned that trying to coordinate medical care between two different hospital systems is nearly impossible. It was late on a Friday afternoon and no one seemed willing to help until a bad ass New York nurse performed a miracle and somehow got my scans sent. Hallelujah! I was able to breath a sigh of relief and enjoy the weekend in New York attending my granddaughter’s voice recital and my grandson’s eleventh birthday party.
Monday morning we left my daughter’s apartment early, took a very expensive 45-minute Uber ride to the doctor’s office in New York City traffic, and presented ourselves at registration. We had to go over lots of bureaucratic red tape consent forms that would normally have scared the crap out of me, but I don’t scare easily anymore. Then I noticed that the nurse was speaking of the trial vaccine in future tense. I stopped her and said, “We are here to get the vaccine today! We are starting the trial today!” The consent form stuff could have been an email or a zoom meeting at the most. The nurse looked a bit sheepish and left to get the doctor.
Apparently something was lost in translation, or somebody dropped the ball. Somebody screwed up and it wasn’t me! Frenzy ensued as the doctor and nurses tried to make arrangements for me to get the trial vaccine on Monday afternoon. My next option was to get the vaccine at 8:00 a.m. on Tuesday morning. I had a 10:30 a.m. flight. We were advised to go get lunch while they tried to work things out for a Monday afternoon appointment.
I did get a fabulous hamburger. Mid-way through lunch the nurse phoned to say we had an 8:00 a.m. appointment the next day. At the same moment as her phone call my husband got a message from American Airlines asking if our travel arrangements were flexible and would we like to make changes to our flight at no charge. Yes, please and thank you.
On Tuesday morning after another early and expensive Uber ride we presented ourselves at the infusion lab. I went back by myself, thinking I’m getting a vaccine and then we’re out of here. A very nice nurse came in and informed me that they had no idea why I was there. There was no paperwork, no consent forms, no lab work. That’s when I broke.
I had been on pins and needles for weeks jumping through all of the hoops to get into this trial. I’d gone through stress and frustration day after day as I felt like an insignificant cog in the giant medical machine. Just when I thought I was finally winning at some part of this cancer game, the bottom fell out. Yes, I cried. I asked the nurse to get my husband and daughter from the waiting room. When they saw me sobbing they assumed the worst - that I didn’t qualify for the trial.
Thank goodness for angels masquerading as nurses. My lovely nurse took charge and got everything under control. Consent forms - check. Blood work - check. Urine sample - check. Orders to the pharmacy for vaccine - check. Kind words and sympathy - check. I had to wait two hours for the vaccine to thaw (they keep it frozen), and then stay for observation after the injection, but we got it done. Thankfully we changed our flight home.
We arrived back in Texas at 11:00 p.m. instead of 3:00 p.m. A small price to pay for a chance at a cure or a time extension. We will be back for the second injection in two weeks. I hope I get the same nurse.
