My Electronic Parotidectomy
April 27, 2009, 6:03 pm
Filed under: blogging, Chicago, deafness, hearing disability, Music, Uncategorized

The arrogance of me, ever thinking I know what’s in store.  I was all set for May to be a packed month, as we have a village-wide garage sale here in Evergreen Park next weekend (Saturday May 2, Be There!), and then we have tickets for Leonard Cohen at the Chicago Theatre May 6.  On May 14 and 16 I had volunteered to help document events for Amy Krouse Rosenthal, the second of which would be Chicago’s Beckoning of Lovely event (details here, location TBA).  Later in the month I thought I might try liquidating more junque at the Peoria Flea Market.  Last Thursday when I walked into the Cancer Center I was thinking how glad I was to be in slightly better shape, wondering if I should take up running to fill in the time before the local swim club opens.   Being an old pro at these things, I figured I was in for a biopsy to make sure the funny little bump under my right earlobe was benign.  When I found out I was in for surgery regardless, I passed on the biopsy.  After what I’ve been through, why on earth would I want to get poked any more than I have to?

The good news is that my little bump is still probably benign, but the bad news is that I’m now rearranging what was already a busy schedule to accommodate a surgery (superficial parotidectomy)  that involves peeling back my facial skin and slicing off a mass that just happens to be inconveniently located in close proximity to my right facial nerve.   I have never really thought about my right facial nerve before but all of a sudden I am realizing it is something I would like to keep.  The world of us frequent patients is a surreal one in which even the good doctors toss out phrases like temporary facial paralysis and nerve monitors as if these are normal everyday things you pass every day on your way to the bus stop or throw in your shopping cart at the grocery store.   There may be a slight sunken area at the surgery site, but we’ll try and reconstruct as best we can. I take it all in, leave processing for later.   Overnight stay, general anesthesia, hearing aids out for the surgery.  More IVs, I’m sure.  I’ll need a CT-Scan, an EKG, referrals, plus my doctor’s clearance for the surgery.   More busywork, because clearly I do not already have enough to do.

One of the few fringe benefits of this news is that it gives me an excuse to complain about the abomination that is health insurance in this country.  You might think I don’t have much to complain about, as I have Blue Cross/Blue Shield and almost everything I need is covered.   Of course those without insurance are in much worse shape, and of course there is no valid reason why anyone in this country who needs medical assistance should not have it.  Do I even need to go there?

That large, glaring problem aside, it is so absurdly clear that our whole system of referrals is designed to minimize the expenditures of insurance companies at the expense of patients.  All my doctors are at one institution, Loyola.  When my oncologist refers me to the ENT guy that information goes into my record, just as it does when the ENT guy orders a CT-Scan.  A doctor in your system said I had to have this, what more damn hell kind of referral do I need? I am contemplating unexpected surgery, struggling to manage all the tests and coordinate everything that needs to be done without completely sacrificing events I’ve looked forward to for months, so obviously there is nothing better I could do with my time than to sit on hold with my doctor’s office so I can tell them information that could all be conveyed electronically between medical personnel without any need for my participation.

Absurd as all of this may be, we are conditioned to do it because of course we don’t want to pay those bills.  I was reminded of this recently when I got a bill for well over $20000 and realized I had forgotten to call in the referral for my quarterly Zoladex injection.   I’ve been getting this injection every three months for a few years now and my primary care physician obviously approves of this or she would not have signed off on umpteen referrals.  Blue Cross/Blue Shield knows very well these injections are a regular part of my follow-up  treatment for breast cancer and they could easily confirm this, but they reject the claim and I get billed.   The primary concern here should be what is necessary for my treatment, not whether I remember to jump through the correct sequence of hoops, but a bill for $2500 is the kind of Gotcha! I can’t argue with, so I’m on the phone again.

The more I research this surgery, the more I understand I will not know what I am up against until it’s over.  Having placed myself in the hands of capable surgeons and anesthesiologists a few times too many, I don’t fret about the surgery itself.   I find the best way to go into these things is to collaborate as much as possible with the people who are kindly trying to save my sorry ass.  There inevitably will be some negotiations over hearing aids, more daunting this time because my surgery will be above my neck and involve my right ear.  Put that together with the likelihood of some facial paralysis on my right side and you have the makings of a communication fiasco, but I’ll find a way to make my needs known even if I have to wink in Morse code.

Speaking of winking or the inability to do same, my biggest concern about recovery is that some people find themselves unable to close the eye on the surgery side for some time after the operation.  I am not so nervous about drooping or talking funny as I am about having my vision interfered with, particularly with a hearing disadvantage.  I am also upset that I’ll have to keep the sun off my scar, as I’ve been so looking forward to swimming as one of the few fringe benefits of summer.  There are just so many variables, so many things that are undetermined until I am on the other side of this surgery, but at least there will be vicodin.

Some folks near and dear to me expressed surprise that I would delay this extravaganza, but I am bound and determined to have that Leonard Cohen show under my belt before I go under the knife.  Lenny and I, we have both taken a few bumps and bruises along the path to enlightenment, but we still keep seeking and singing because the alternative is unthinkable.  If by some chance I have cancer, I’ve been there and done that and I’m still here disturbing the shit five years later.  I could theoretically have cancer and a Leonard Cohen show or cancer and no Leonard Cohen show, so which of those sounds better?  Duh.

I may not be here much or I may feel the need to post more than usual, but either way I’m thinking I’ll be fine.  The sweet selfishness of this space dictates that it will be here if I need it and will wait patiently if I’m out of commission, but I always scuttle back to my lair because it feels like home.  Feel free to send good thoughts, because I’ll need a few.  If you have an irresistible compulsion to send chocolate I won’t object, but I think I need the good vibes more.  The best thing about having thus far survived breast cancer and chemo is that almost everything else seems like a walk in the park by comparison.  I may be as patched-up as my daughter’s teddy bear, with odd seams and depressions everywhere you look, but we both persevere, because we have a purpose.

1 Comment so far
Leave a comment

Well-written, my dear. I hope Leonard winks at you.

Comment by Marianne

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: