Tuesday, March 9, 2010

To fear (and love) life

(Warning:  This post contains bad words, medical angst, and no fluff.  Don't want to read it? Go here for puppies and pretty thoughts.)

Crazy lady has decided to have the big, bad, risky surgery. March 16tth is the pre-op, and March 22nd is the actual day of surgery. Her insurance runs out in June, and she really can't afford to wait for the Social Security Administration to get their heads outta their asses and do the right thing.  If she's gonna die or be completely paralyzed, she might as well have health insurance during those critical points in her life.  The number one response she hears?

"Why are you so calm? I would be scared shitless."
Yeah, so, here's what crazy lady has taught me about fear-- you let it rule your life?  You stop living.  Don't get her wrong-- fear serves a purpose.  It stops us from injury, illness and pain.   Eventually, though, we all need to jump off that cliff, take the risk, and trust in ourselves.  Her recent life's mantra is: "If I let fear make all of my decisions,  I would cover my body in bubble wrap and refuse to leave my lazy-boy."

So, seven doctors.  All specialists, all top neurosurgeons in the country.   UCSF, UCLA, Stanford, Mayo, MGH...you name it, she has spent many months seeking their opinions.  It was her version of "mitigating the risk" to "prepare for diving off that cliff."  Crazy lady is part of the Kaiser system, and Kaiser is not exactly known for cutting edge technology (interestingly, though, they are known for amazing rehabilitative care following spinal cord and brain surgery).  Spinal cord surgery procedures have not changed much in over 30 years, especially in the neck.  Some of the most interesting advancements in nanotechnology  have not reached human clinical trials, yet-- and, the powers-that-be estimate another 30 years, before the technology is ready for human consumption. Cervical spinal cord regeneration with stem cells?  If she could relocate to Tokyo and Israel,  then maybe that would be an option. Unfortunately, it's not a realistic approach in the U.S.A., thanks to an ignorant moral minority that put medical research 15 years behind-the-times during IBY (Idiot Bush Years).  Obama is doing a lot to change the backwater approach (see here for details), but progress is slow.
Anyhow, I digress. After all of the second opinions, she found some consistencies:
(1) no one knows what, exactly, will be done during surgery, and they have to take a "let's open you up and see what we get" approach,
(2) no one can predict the outcome,  and
(3) no one will know anything until 2-3 days following surgery.

Why so many unknowns?  Spinal cord injuries are  "crazy, unpredictable beasts."    When they remove the spinal column and tumors, there will be a surge of spinal fluid, and the bruising and lesions on the cord will have a chance to "breath."  In crazy lady's active imagination, her spinal cord (named "Cornie") has an ornery personality.  Cornie could decide, "hey, I like my new-found freedom" and be content to stay "as is" with no change to crazy lady's current condition.  Or,  Cornie could say, "fuck it, you wanna play games?  Take this,"  and then go completely (to quote one neurosurgeon) "ape shit." 
Best case scenario?  Five days in the hospital, home for 3-6 months of rehab (including in-home occupational and physical therapy) and recovery.  The second best case? After 5 or more days in the hospital, transfer to a rehab facility for up to 18 months of inpatient care. There's a whole bunch of "little" stuff she needs to prepare for-- problems swallowing, feeding tube, losing her voice, drainage shunt for the spinal fluid, incontinence-- and, the docs are doing what they can to work around some existing issues that won't go away with surgery (autonomic dysreflexia, autoimmune complications,  paralysis and seizures are her current biggies). All-in-all, crazy lady and her docs are preparing for the worse, and hoping for the best.

So, how do you mitigate risk and reduce fear, when there is absolutely no way of predicting the surgery's outcome?  You start by planning for each and every contingency.  No matter your age or health, it's important to...

(1) make sure you have an updated Last Will and Testament-- and communicate your wishes to anyone impacted by your will!  You can find free templates here.
(2) complete an Advance Health Care Directive.  The State of California has an excellent web site here,  and Kaiser Hospital provides a helpful guide that anyone can use (download here).
(3) as part of your directive, include personal health care wishes-- and, make sure you communicate these wishes to family and friends.  Let people know-- do you want to die at home, or in the hospital?  Cremation, burial, or frozen bits? Donate your organs?  It might be morbid, but taking these extra steps to communicate your wishes will seriously reduces stress, in the long run.
(4) make sure your dependents (like me!) are taken care of, no matter the outcome.  I'm staying with my foster mom and her clan during and immediately after the surgery.  Crazy lady has made sure my shots and insurance are up-to-date, and I'm looking forward to my pedicure this weekend.
Finally, find a way to turn the negative into a positive.  Crazy lady understands arrogant bitches because, well, let's face it-- she is my caregiver and we share many of the same personality traits.  She likes her brain?  I love my brain!  She adores her voice?  You should hear me speak!  She enjoys her luscious, long, light brown locks of hair? You should see my golden, thick coat.   The surgery might impact her brain and voice, and crazy lady has planned for those scenarios.  But, you should have heard her cries when she learned that they would be SHAVING HER HEAD AND NECK.  Duh.  Her central nervous system can't communicate to her brain, so the surgery requires easy access to both regions of her body. Listening to her complain, you would think they were talking about something serious, like a feeding tube or brain damage.  Nope, those things did not stress her out.  However,  talk about shaving her head?  The woman FREAKS OUT.

Ah yes, vanity and pride are cruel human traits.  Crazy lady had to take time to convince herself, "It's only hair. It will grow back. Why not make it a positive experience?"  So, this morning she had her hair cut off.  All of it.  She saved the locks and sent them to Pantene for cancer wigs:
The actual hair cut was free and painless (the Clip Joynte donated their time for charity, a "wow, awesome" surprise!)  The only downfall was the bald spot she discovered in the back of her head:
Thank dawg that friends and family have been sending crazy lady beautiful scarves, caps and hats, to keep her delicate scalp warm and toasty:
So, there you have it--  a date for surgery, a lesson in fear, and some tips for dealing with life events.  Plus, a little something good came out of this world of unknowns.  How cool is that?


Khyra The Siberian Husky And Sometimes Her Mom said...

Thanks for sharing all that is ahead for you and The CL -

All of you will be in our thoughts - actually, you usually are in our thoughts -

We think The CL is just ornery enough to beat this crap -

BTW, IBY - too effin' funny!

Kari in WeHo said...

wow. that is quite the journey ahead of you. I wish you nothing but the best and I hope you will be able to tell us what happens in some form!

Twinkietinydog said...

We're standing up and we're applauding your mother. What an approach!!! You rock, momma! With that attitude you'll beat all the odds. And donating your hair...and all that using Kaiser, ugh. A subject to close to home for us, as you may have guessed. Our thoughts go out to you and we look forward to great updates.
Our best,

The OP Pack said...

We are banking on success! Your Crazy Lady's attitude will dominate over all the odds. We will have you both in our thoughts and prayers for all to go well.

Woos - Phantom, Thunder, and Ciara

Tweedles -- that's me said...

I applaud you Crazy Lady
You have GRIT
thats for sure.
Thanks for sharing all this- you can count on us to be rooting for you,

Pibble said...

Well. I came by after finding a comment from a pretty little dog named Sugar on another blog. I wasn't expecting this, but then again, Crazy Lady probably wasn't exactly "expecting" this, either.

Crazy Lady has quite a road ahead of her. But it sounds like she has the support of some pretty good friends, doctors, and one very special doggy named Sugar to help her along the way.

Please tell her my monkeys and I will definitely keep her in our thoughts. Our paws are crossed for you, Crazy Lady.

And IBY is akin to IBS; both cause stomach upset and discomfort. :)