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

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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/

Let us kill the Jabberwocky

‘Twas brillig, and the slithy toves
Did gyre and gimble in the wabe:
All mimsy were the borogoves,
And the mome raths outgrabe.

‘Beware the Jabberwock, my son!
The jaws that bite, the claws that catch!
Beware the Jubjub bird, and shun
The frumious Bandersnatch!’

He took his vorpal sword in hand:
Long time the manxome foe he sought —
So rested he by the Tumtum tree,
And stood a while in thought.

And, as in uffish thought he stood,
The Jabberwock, with eyes of flame,
Came whiffling through the tulgey wood,
And burbled as it came!

One two! One two! And through and through
The vorpal blade went snicker-snack!
He left it dead, and with its head
He went galumphing back.

‘And hast thou slain the Jabberwock?
Come to my arms, my beamish boy!
Oh frabjous day! Callooh! Callay!’
He chortled in his joy.

‘Twas brillig, and the slithy toves
Did gyre and gimble in the wabe:
All mimsy were the borogoves,
And the mome raths outgrabe.

Spinal Cord Tumor Association

Since receiving my diagnosis, I have been desperate for information. Spinal cord tumors are rare, so there are not a lot of people to turn to for first hand information. Fortunately, I found the Facebook page of the Spinal Cord Tumor Association. This is an active group of around 2,000 supportive survivors and caregivers.

While some of the stories that people share scare me to death, I have also found some inspiration and solid advice. Right now that is what I need more than anything else.