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.

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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/