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/

Questions for your first consultation with the doctor…

Here is a list of questions that I am compiling in preparation for my first consultation with my neurosurgeon.

  • What type of tumor do I have?
  • I’ve been told the tumor is probably benign, do you agree?
  • What is the natural course of my condition if not addressed?
  • What are my treatment options?
  • What are the treatment goals?
  • Do I need additional tests before we can decide on treatment options?
  • Which treatment option do you recommend?
  • Will the treatment eliminate the current symptoms?
  • What are the risks/side effects?
  • What are the pros/cons of beginning treatment sooner rather than waiting?
  • What should I do to prepare for treatment? Can I continue my current exercise routine? Should I add/subtract anything?
  • How long will the treatment/recovery take?
  • How long is the hospital stay?
  • How long will I be out of work?
  • If I need surgery, do you perform the whole procedure? Will students/other surgeons be doing any parts of the operation? If yes, who are they and what are their qualifications? 
  • Who else will assist you in the operation? What are their background and qualifications?
  • How long would I need to stay in Houston?
  • What is the success rate for this treatment?
  • What is the long-term outlook/prognosis for my condition?
  • What type of follow-up will I need after treatment?
  • I am thinking about going for a second opinion. Is there someone there you would recommend?
  • Can I talk to any other patients who have undergone similar treatment?

If I do need surgery:

  • What kind of pain should I expect post-op? And for how long?
  • How long will I be in the hospital?
  • Will I need to have inpatient PT/rehab following the surgery? If yes, for how long?
  • Will I be able to get adequate PT follow up when I get back home?
  • Will I need any special equipment after surgery (i.e. a back brace, a walker)?
  • How often will I need to come to Houston for follow-up care after the surgery?
  • Do you have any previously existing ties with neurosurgeons/neurologists in my area?
  • What will I do (who do I call) if I have problems after I am back home post-surgery?
  • What kind of assistance will I need during the recovery period?
  • When will I be able to drive?
  • If I have surgery to remove the tumor, what is the likelihood that I will develop another one in the future?

Can you think of anything I missed?

Here are some relate links:

https://www.spine-health.com/blog/40-questions-ask-your-surgeon-back-surgery

https://www.spine-health.com/treatment/spine-specialists/specific-questions-ask-your-spine-surgeon

http://www.hopkinsmedicine.org/healthlibrary/conditions/surgical_care/questions_to_ask_before_surgery_85,p01409

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.