From Survivorville to “Scanville”: My road back to reality
I came back from an absolutely exhilarating time at the Survivorville, a women’s cancer conference in Nashville. Not only was the venue beautiful – The Gaylord Opryland Hotel and Resort – but the women I met were too, inside and out.
The two highlights were 1) meeting fellow stage IV survivors/co-survivors who were volunteers and at my breakout session: The Buck Stops Here: The Power of Becoming Your Own Advocate, and 2) reading my story for My 2nd Act: Survivor Stories from the Stage. I was in awe of the nine other women and two little girls, who shared their stories of struggle, loss, inspiration and hope and how they transformed the life-changing experiences with cancer to a new way of life. For instance, Ariana and Naveya, the two girls pictured with me, decided to raise money through a hot chocolate stand and a business selling hair bands to raise funds for childhood cancer after losing a friend to the disease.
I spent some fun time with my friend, Becky Olson, founder of Breast Friends in Portland, OR, and even got to lounge by the pool. Coming full circle, I found myself sitting by Andi, one of my favorite chemo nurses who encouraged me during my early days of my blog and writing my book. She had come to the conference for her new job as a patient navigator and only found that I was presenting after she got there.
Then it was back to reality. I came home on Sunday, and on Monday picked up my scan results from the previous week. I was glad I was so busy because I didn’t have time to think about them. And I was optimistic because I’ve been feeling so good. So I didn’t really have scanxiety until I went to pick up the envelope with the results. I felt the weight of the envelope. Immediately I could tell it was at least two pages long. Not a good sign.
I went back to my car and shakily read the report of my PET/CT. As usual, it was confusing. I had to go home and Google all the medical terms. By the looks of the Standard Uptake Value (SUV -what lights up), it appeared I have progression to my liver. But it showed the lesions on my omentum and peritoneum where shrinking a bit. (Yes, I could pass an anatomy and physiology class after all this.) Conclusion: mixed results. The problem was there were no measurements of the lesions except for the two that were shrinking. And I know SUV values are not always accurate. I decided not to freak out for once and to wait to talk with my oncologists.
Yesterday, I met with Dr. Drosick, my local oncologist. He was noncommittal but didn’t think the SUV values had gone up that much and agreed they are often inaccurate. I asked if they could go back and do measurements, and he put in an order for it. I should find out tomorrow. I just got off the phone with the nurse of my consulting oncologist, Kathy Miller, at IU Simon Cancer Center in Indy. From how I’m feeling and other indicators, she didn’t think it sounded like progression. More will be evident once we get back the scan with those measurements.
In the meantime, one stage IV friend has suddenly passed away while another is in hospice. I also have two very close friends/mentors who are definitely struggling with aggressive disease. It makes me angry, sad and scared at the same time. Yet I go on and live my life, praying for them and hoping for a new drug to come about that can save them and the rest of the people who still have to deal with this stinking, stupid, heartless bastard called cancer.
Today I enjoyed a very nice day with my daughter, going shopping for a Father’s Day gift and hanging on our porch talking about her life as a teenager. It was one of those really good talks that I hope she’ll remember. It’s times like this when I’m truly grateful to still be here to help guide her through the often messy journey through high school. She is a wonderful kid. I’m very proud of her. So I am here in the moment, making the very best of my summer with her … no matter what the scan says.