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

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For that we have each other…

The first time I heard Andra Day’s song, Rise Up, I immediately thought of it as a survivor’s anthem. I heard the refrain, and I thought about my daily struggles, and the effort I make to rise up and face each challenge.

Then I saw the video, and I realized that I was so caught up in my own drama, I hadn’t even noticed some of the lyrics. Clearly this is a song of solidarity, but I hadn’t heard the “we” because I was too focused on the “I”. As I watched the video, I immediately thought of all the things my husband does every day to help me find the strength to keep on keeping on.

“You’re broken down and tired of living life on a merry go round, and you can’t find the fighter. But I see it in you, so we gonna walk it out and move mountains” from Rise Up sung by Andra Day

I was very fortunate to have people to take care of me during the early phases of my recovery. I can’t imagine what I would have done without my husband, my mother, and my father.

I know it hasn’t been an easy year for them. They have had to take on more responsibilities, and they have had to make sacrifices to make sure I have what I need. In fact, even now that I am back at work and getting stronger by the day, they are still making little daily sacrifices to make sure I am cared for and comfortable. For that, I am so grateful. So I am going to post the video here for all of the people who are caring for me and my fellow SCT survivors.

We will rise up!

WHO Classifications

 

I have noticed a lot of chatter on the SCTA Facebook page related to diagnoses and WHO classifications of tumors. I know that this is an important issue for those of us who have been given a SCT diagnosis, so I started looking for resources related to this topic. One of the best resources I have found in terms of explaining the differences in the WHO grades is:

The 2007 WHO Classification of Tumours of the Central Nervous System

Of everything presented in the article, I think the following paragraph was the most helpful:

Grade I applies to lesions with low proliferative potential and the possibility of cure following surgical resection alone. Neoplasms designated grade II are generally infiltrative in nature and, despite low-level proliferative activity, often recur. Some type II tumours tend to progress to higher grades of malignancy, for example, low-grade diffuse astrocytomas that transform to anaplastic astrocytoma and glioblastoma. Similar transformation occurs in oligodendroglioma and oligoastrocytomas. The designation WHO grade III is generally reserved for lesions with histological evidence of malignancy, including nuclear atypia and brisk mitotic activity. In most settings, patients with grade III tumours receive adjuvant radiation and/or chemotherapy. The designation WHO grade IV is assigned to cytologically malignant, mitotically active, necrosis-prone neoplasms typically associated with rapid pre- and postoperative disease evolution and a fatal outcome. Examples of grade IV neoplasms include glioblastoma, most embryonal neoplasms and many sarcomas as well. Widespread infiltration of surrounding tissue and a propensity for craniospinal dissemination characterize some grade IV neoplasms.

My own tumor was given a WHO grade I. Based on the information in this article, my surgeon’s approach to the tumor makes complete sense. Although the tumor has the potential to recur, he believes he achieved a complete resection of the tumor. He is having me return every three months to make sure there are no signs of recurrence, but he is very optimistic when my long term prognosis is considered. Hopefully this article will help other SCT survivors understand the implications of WHO grading.

Louis DN, Ohgaki H, Wiestler OD, Cavenee WK, Burger PC, Jouvet A, Scheithauer BW, Kleihues P (2007) The 2007 WHO classification of tumours of the central nervous system. Acta Neuropathol 114(2):97–109

Disclaimer: I am not a doctor. I do not have any training in this area. I am just sharing my personal observations. 

scar(r)ed.

This is probably one of the most beautifully hopeful posts I have seen from someone who is sharing their post surgery experiences. Since having my surgery, I have wondered at the number of people posting photos of their scars – proudly, almost defiantly – on the Spinal Cord Tumor Association Facebook page. I have even noticed that I have a fascination with my ever evolving scar. I want the world to see it. I want them to know and recognize that I am a warrior. While I spend much of my time and energy trying to live my life as if this tumor didn’t change me, the undeniable truth is that is has changed me. The scar is tangible, outward proof of the changes (emotional, psychological, and physical) that I have experienced in the past six months. And here, in this blog, is a warrior who very eloquently explains what so many of us have felt. Take a minute to read her blog, and keep rocking that scar.

aperture expanding by Kelsey Pfleiderer

When I first started dating my husband Luke, I covered my mouth anytime joy tried to sneak out of the corners of my mouth. This was something I didn’t realize I had learned to do over the years, but it is something Luke caught onto right away. A few weeks into knowing each other, I received the first ever coveted “Goodnight, beautiful.” text from him. My heartbeat quickened and, unknowingly, I covered my shy smile with my left hand. Seconds later, he sent a second text saying,

“Let me guess, you’re covering your gorgeous smile and your green eyes are twinkling. Right?”

What. The. What???

Puzzled as all heck, I glanced around my apartment wondering how in the world he would have known something about me I didn’t even know about myself (also wondering if this incredible, seemingly normal man I had already known would be my husband was somehow…

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More resources… CERN Foundation

Today I would like to share another resource for everyone out there trying to understand spinal cord tumors – CERN Foundation

I first learned about the CERN Foundation because some of the other folks on the SCTA Facebook page mentioned it. The CERN Foundation focuses on one particular type of spinal tumor – ependymomas. Their site has a wealth of information about these tumors. They provide links to support and resources for people coping with ependymomas. They also help to put people in touch with research centers if they are interested in taking part in clinical trials.