Book Review: REWIRED

Established in 2006, the CERN Foundation is a nonprofit organization dedicated to improving the lives of those affected with ependymoma (a specific type of spinal cord tumor). On their site, they share survivor’s stories. One of the survivors featured on their site is Dawn Standera, the author of REWIRED: A Story of Recovery from Spinal Cord Tumor Surgery. Here is my review of her book from 2017.

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Today I want to share a resource with others out there who are also on this journey: Rewired, a book by Dawn Standera. On Amazon, the book is described as follows:

Adults with spinal cord tumors are exceedingly rare, and written accounts of what it’s like to survive tumor-removal surgery are even more rare. Through this book, Dawn hopes to give those who are on a similar journey the reassurance that they are not alone. She not only offers a glimpse into what their post-surgical experience might be like, she also offers insights on how they might accept their body’s new language with curiosity, humor, gratitude and grace.

I bought this book after receiving my diagnosis and found that reading it helped me to not feel so alone in my diagnosis. Dawn doesn’t sugar coat any aspect of her journey, but she does, somehow, convey her optimism and her determination to not let this beat her!

I highly recommend this book to anyone with a new diagnosis (or caregivers who need some insight into what your partner is experiencing).

If you are more of a video person, you should probably check out her presentation at the following link: https://mediaplayer.mdanderson.org/video-full/F52169CD-878C-4F65-B75B-A2B73DCBA0E1

18 months …

Recovery update: Since some of you have asked, here is the latest on my recovery. It has now been 18 months since my surgery, and I have to keep reminding myself that my doctors told me it would take at least two years to recover from the surgery. It is hard to keep that in mind when comparing my recovery with the recovery of people who have had more routine back surgeries. I need to remind myself that the tumor was actually in my spine, and that I basically suffered a spinal cord injury when they took the tumor out. When I take this into consideration, the progress I have made so far is amazing.

This time last year, I was just starting to tread water with the hope of swimming by the end of the summer. Now, a year later, I am happy to report that my motor abilities are just about back to where they were before the surgery. I am doing yoga every day, I am swimming every weekend, and I am out walking Monday thru Friday. I can climb stairs without difficulty, and I can sit for longer periods of time. This is a major improvement over this time last year. 

I am also happy to report that the numbness in my left leg/foot is improving. Although I still have some tingling and the occasional pain in my left leg/foot, I have enough sensation to confidently walk on uneven surfaces. I still have trouble with slippery floors, but it is getting better. 

Despite these improvements, I still have deficits that would not be apparent to most people who interact with me on a daily basis. The biggest problem is spasticity in my lumbar region. If you don’t know what spasticity is, imagine a muscle spasm that never goes away. That is what I have had every day since my surgery. Some days it is only in my back, other days it seems to wrap around my body like a corset. The pain associated with the spasticity can increase or decrease as a result of my activities, fatigue, or stress, but it never completely goes away. Three things that definitely increase the spasticity are carrying anything heavier than a gallon of milk, driving, and working on a computer. 

I am still working with my medical team to try to reduce the spasticity, and I am still going to PT. Improvements at this point are barely noticiable from day to day, but when I think back to last year, I can definitely see that I have made some progress. 

I continue to be grateful to the people who have been by my side throughout the past two years as I’ve dealt with the diagnosis, surgery, and recovery. It is a long road, but having your support makes it easier. Thank you!