Walk it off…

Being diagnosed with a spinal cord tumor opened me up to an entire world I didn’t know existed before. It probably has a lot to do with google’s algorithms, but suddenly it seems like I am constantly stumbling upon more information about people who have been through surgery to get rid of a spinal cord tumor.

An excellent example is actor Ruth Marshall. You may not recognized her name immediately, but Ruth Marshall is an actor who played a mother to one of the teen characters on the television show Degrassi: The Next Generation. She has also acted in Hollywood films including Casino Jack and Dolores Claiborne.

The reason she is now appearing in this blog is that in 2012, she was diagnosed with a spinal cord tumor. Now that I have had my surgery, I can say her story reminds me how lucky I am (more details about my case coming soon). I heard her interview on the CBC (Canadian Broadcasting Company) radio. You can listen for yourself by clicking this link to What’s it like to re-learn how to run, walk, pee, and have sex? ‘Degrassi’ actor tells her story

I plan to get a copy of her book: Walk it Off

Here is a summary from the publisher:
Ruth Marshall—power mom, wife, actor, and daughter—was in great health, until one day, her feet started to tingle. She visited doctors and specialists for tests, but no one could figure out the cause of her symptoms. Was she imagining those pesky tingles? She tried to brush it off, even as she tripped over curbs and stumbled into people. Clumsiness is charming, right?

But when Ruth suddenly couldn’t feel her legs at all, she knew something was terribly wrong. Her fears were confirmed by an MRI revealing a rare tumour that had been quietly growing on her spine for more than a decade. Within days, surgery was scheduled, and after the intense eight-hour ordeal, Ruth woke up to find her legs and feet had forgotten how to do…well, everything. The question that burned in her mind was, “Will I ever walk again?”

What Ruth thought would be three days in the hospital turned into months of rehabilitation as she relearned not only how to walk, run, pee, and even have sex again, but how to better appreciate everyone around her—including her devoted husband, her two young sons, her worried parents, her sisters, her loving friends, and the caring staff at the rehab center who help her tackle her recovery head-on.

Laugh-out-loud outrageous and searingly honest, this is a memoir that not only entertains but inspires readers to put their best foot forward and walk off anything life throws their way.

I will write a review here after I have finished reading it. If any of you have read it, would love to know what you think about it.

Advertisements

Note to self…

Now that I have a date for the surgery, I need to make a note to myself so I can refer back to it on the dark days of the recovery. I need to remind myself of the reasons for the surgery. I need to remember that I landed here after having the ability to swim taken from me by pain that seems to be attributed to this tumor. I need to remember that the strange sensations and pains in my leg, hip, back, and abdomen will only get worse (not better) with time and that I need to confront my fear, trust my doctor, and jump towards the only hope that I have of regaining what I have lost and maintaining what I currently have.

I need to remember the times when I have lost my balance, when I’ve fallen, when I sat on the floor because the chairs were too uncomfortable, when I chose to skip a movie or a concert because I didn’t want to sit that long. I need to remember that while these things may not be better after the surgery, they will certainly, slowly but certainly, get worse with time if I don’t just jump.

And so… now… I’ll jump.

Never Give Up…

So far I have been able to deal with my diagnosis in a largely abstract/academic manner. I have researched and planned and studied. I have been able to talk about it calmly with coworkers and family members. In fact, they have all been amazed by my composure in the midst of all of this. Then the phone call came… telling me that the surgery has been scheduled for December 13th. That is just 10 days away. And as I calmly spoke to Maria from admissions, I felt a rush of panic rush over me. I need to remind myself to breath. I have faced challenges before and have made it through darkness, and I’ll do it again this time because I am strong!

“I’ve battled demons that won’t let me sleep;
Called to the sea, but she abandoned me.
But I won’t ever give up, no, never give up, no, no
No, I won’t ever give up, no, never give up, no, no
And I won’t let you get me down
I’ll keep gettin’ up when I hit the ground…”

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.

 

 

Rewired

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

The cost of care

Last week I had my initial consultation with a doctor at MD Anderson. I just logged in to see how much they are charging me for a consultation and MRI scans of my CNS, and I was shocked to see that there are more than $20k  in charges on my account. I have good insurance, and I am hoping most of that is covered, but I can’t help wondering what I would do if it were not covered. That is a lot of money!

Then I begin to think about people who are not fortunate enough to have health insurance. If I were to lose my job and the health insurance that comes with it, there is no way I could pay that much money! And this is just the beginning! I still have the surgery, which could add $80-90k to my bill, and suddenly we are talking about approximately $100k in medical bills. Even if every penny of my take-home salary went towards the bill, it would take me more than two years to pay it off! But I can’t put 100% of my salary into it because I have to pay my other bills. Where does that leave me? Watching the current health care debate very carefully!

What’s Next For The Affordable Care Act? Julie Rover, chief Washington Correspondent for Kaiser Health News, talks about the state of health care in the U.S. today, and how it could move forward. Read more on NPR

via NPR News: What’s Next For The Affordable Care Act? — William Chasterson

Check this out to get some information: https://www.kff.org/uninsured/fact-sheet/key-facts-about-the-uninsured-population/