As most of you know, my daughter had another tumor removed last July. This was her second occurrence of leiomyosarcoma. She had a liver resection. Two institutions opined that it could not be determined if it was a new primary tumor or Stage IV as the cells of leiomyosarcoma were exactly the same. She was 6 months shy of her 5-year anniversary.
As a parent, at first I was first in warrior mode, then caregiver mode and then when the dust had settled became completely distraught. I have complex PTSD and this event was a trauma trigger on the magnitude of an 8.0 earthquake collapsing the entire house. I went into the usual grieving over whether she would live or die. I had to wrestle with Can I stand by and watch my daughter die from this? Would I rather be dead? Even after all I had been through, fighting to live, living through my first husband’s death, could I do this again? I asked myself these questions and more.
My daughter recovered and moved on with her life quickly and with a healthy outlook. I, on the other hand, I retreated and broke off many connections. I stopped blogging, tweeting. I couldn’t connect with others. I didn’t want to. I couldn’t even read a book. I had nothing left except time to think. Too many times I’ve been through this, you would think I would approach things differently. But I realized, I’m not perfect, I’m human – and this is my nature and this is how I cope.
While all this was going on, my other child, a son, a man now, bought a motorcycle. I was under so much stress, life and death issues. Could I let go of everything? Could I let my children go? Could I accept that I have no control of the future, no control over anyone’s mortality including my own?
In the meantime, friends have received new cancer diagnoses; friend’s children have been diagnosed, sometimes again. Friends have died. This is the nature of Li-Fraumeni Syndrome. I hope I am forgiven for the abandonment that hurts deeply and has hurt me so much in my lifetime.
The tide finally turned after about 6 months. I felt stronger, less depressed. Although I’m still wrestling with it all at times, I’ve returned to my spiritual practice with renewed vigor. I decided that I could live – moment to moment at least – and that’s all we have anyway, right?
So again, I am following the news and much is happening in The Nation of Cancer! Too much for one blog post, but good things have been going on. I’m reading again! Yippee!
So one of the first books I read was p53: The Gene that Cracked the Cancer Code by Susan Armstrong.
The author is a science journalist from Scotland who took on the enormous task of chronicling the history of the discovery of oncogenes and tumor suppressors. She focused on the p53 gene, since this particular gene, now referred to as ‘The Guardian of the Genome’ has been the subject of intense research for decades around the world. Mutations of this gene are implicated in a majority of cancerous lesions caused by somatic mutations and being born with a p53 mutation gives rise to Li-Fraumeni Syndrome.
I found the story fascinating in the way that The Emperor of All Maladies: A Biography of Cancer, by Siddhartha Mukherjee, was about the history of cancer. In Ms. Armstrong’s book, she had to wrestle down a very technical and complicated process while telling a story that was readable. She traveled the world and interviewed many of the key researchers in the field of p53. I was amazed how many researchers I never heard of and now knew of. It was awesome to learn how some researchers focused their entire career on studying p53. I already knew of the passion of researchers, but in her book they came to life the way a musician, artist or inventor has passion. Cancer researchers truly hold the key of hope for so many lives.
At times it was hard to follow the chronology of the story since she also had to manage being topically based as well. I think this book took tremendous effort as well as a generous travel budget. I wish there was a 4.5 rating because that is what I would give it. It is informative for anyone that is a bit of a wonk (most cancer survivors become one whether they want to or not) and loves science, medicine, biology and history!
Time continues to move forward and all I can say is THANK GOD researchers aren’t taking a break! They inspire me. Susan Armstrong’s book inspired me. I finally feel more like my other self who says
“NO, THERE IS NEVER A TIME TO TAKE A BREAK FROM CANCER!”
Because friends will be receiving new cancer diagnoses; friend’s children will be diagnosed, sometimes again. Friends will die. The same could apply to me and my daughter or my son for that matter!
And cancer researchers around the world will keep moving the ball forward with passion and my deepest gratitude! Someday, someone in a lab coat will look up in the lab and say “Eureka” and I can live with that.
What do you think? Have you needed to opt out? Is there anyone else that rolls up in a ball like me? What brings you back?
Image credit: 123rf.com: ID:29635273; Copyright : Brett Lamb