From Survivorville to “Scanville”: My road back to reality

The youngest members of the My 2nd Act cast: Ariana and Naveya Crefeld. They stole my heart!

The youngest members of the My 2nd Act cast: Ariana and Naveya Crefeld. They stole my heart!

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.

Me , without the assistance of makeup and hair artists, going through the tube.

Me , without the assistance of makeup and hair artists, going through the tube.

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.

7 Comments

  1. Meg
    Jun 18, 2015

    Hi Tami,
    I am so enjoying your blog and unique take on your journey.
    Your wit and wisdom are inspiring.
    Thanks for sharing yourself and your thoughts.
    Meg

  2. tamilb
    Jun 15, 2015

    Thabnks Corey! Love that quote. Carpe diem has been my motto since getting this diagnosis! Indeed, everyone should seize the day!

  3. Corey
    Jun 15, 2015

    I hate Scanville, although I have been feeling good. I try to look at scans as: “Let’s rule out that the sneaky little bastard has gone elsewhere.” I was on the facebook page “sunsets for Shalin”, which I find very inspirational. They had quoted Horace from “Carpe diem”. I found the passage particularly beautiful and wanted to share it with you:
    Don’t ask what end the gods have given me or you, Leuconoe. How much better it is to endure whatever will be! Whether the gods have allotted you many more winters or this one is the final one, be wise, be truthful, strain the wine, and scale back your long hopes to a short period. While we speak, envious time will have already fled: seize the day, trusting as little in the next day!” -Horace

    It helps me be grateful for the hear and now and makes the big picture of my life a little less overwhelming.

  4. tamilb
    Jun 12, 2015

    Thank you so much Tammy and thank you for allowing me to be part of such an amazing show! It was truly a highlight for me!

  5. Tammy
    Jun 12, 2015

    Back to reality. That’s right. But, making such wonderful, deep connections like those you made over the weekend are the emotional infusions of hope and courage and peace we need to make reality just a little sweeter, a little brighter and a little more peaceful.

    Thank you so much for sharing yourself – all of yourself – with us in My 2nd Act, Tami. We’ve all changed for the better having had you play a part (even a small part) in our lives. What an important role you play.

  6. tamilb
    Jun 10, 2015

    Thank you so much, Sonji! That was absolutely beautiful and poignant. What a great way to look at life!

  7. Sonji
    Jun 10, 2015

    Hi Tami,

    Thanks for sharing an update. Believe it or not, I think of you often. I know my activism hat doesn’t always convey my sincerity, but know that it’s there.

    I’m very happy to read that you had a great time at Survivorville. You deserve an enjoyable distraction from the humdrum of life. I know the journey is like a winding road through a beautiful countryside. At some turns, you can’t see the road ahead as clearly as you hoped. Certain abrupt twists seem to change the calm path to worry. Those are the moments to pause, catch our breath, and stay on course.

    I just took a beautiful drive down a road very similar to what I described. Though it always feels like my first time navigating that stretch of country road, deep down inside, I know it all too well.

    Along the way, I marvel at the serenity of quiet pastures, bee farms, and fields of lavender. Still, it never ceases to amaze me that just as I get comfy driving, along comes some unforeseen distraction. Whether it’s a deer, a lone cyclist, or someone taking a nature walk, I am never quite prepared for their abrupt appearance on the road. Often times, what appears to be a threat or interruption in my ride is merely a surmountable obstacle that I manage to go around. Knowing that there may be more mini interruptions, I proceed with mindfulness that allows me to still enjoy the beauty of my surroundings.

    I see you as an experienced driver on this journey. Some of the steep hills will require you to press a little harder on the gas or briefly focus on the distractions so that you can chart your next plan of action. In a fashion all your own, you manage to overcome the distractions with the might of your joyfulness, determination, and zest for life.

    Keep your eyes on the beauty that surrounds you.

    Blessings to you,
    Sonji

Submit a Comment

Your email address will not be published. Required fields are marked *

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <s> <strike> <strong>