99 Problems

As I recover from jaw surgery (more on that later) I am reminded of the difference between the big problems I face as a result of my disease and the little problems I face as a result of it.  When the big ones come, it's easy to forget just how many small "issues," "adjustments," and "accommodations" I've made. Most of the time I put on a brave face and don't bring up all the annoying complications from surgeries, chemotherapies, radiation, and medications.  But sometimes...a girl's just gotta complain:

• The drooling!  It doesn't get much more annoying than that.  Eating in front of other people?  So not enjoyable.  Not to mention the dripping onto my chest or clothes.
• Bald spot.  No, it's never going to grow back.  And no matter how well it's covered up in the morning, it ALWAYS shows by the end of the day.
• Thinning hair. Everywhere.  No chance of it ever growing back while I'm on these medications, and I'm on them for life.
• Speaking problems.  Some letters just don't get said/heard properly as a result of the reconstructed jaw. B, F, V, P you suck.
• Trouble swallowing.  A result of the tracheostomy.  Lot of scar tissue in there.  Like I'm chewing my cud sometimes.
• Food tastes different.  I eat a whole shitload of Chicken McNuggets because it is one of the few things I can actually taste and they TASTE GOOD!  Yeah, yeah everyone tells me I should eat healthier.  Yeah I should.  Not gonna happen.
• Food is for nourishment, not pleasure.  I used to enjoy going out to new/good restaurants.  No fun there anymore.
• Ongoing/various GI problems.  Think I'll keep the details of this to myself.
• Missing teeth - years spent chewing only on the right side because I have no teeth on the left side.  Some things just cannot be eaten as a result.
• Gnarly bad teeth.  While I got the bottom bridge done, it will be awhile before I can do the top teeth.  Not attractive.  And people who don't know me/my background?  They just think I'm lazy about taking care of them.  Also...not attractive.
• Scars.  Too many to count, most visible.  I'm going to keep getting tattoos until they outnumber the scars.  This could take awhile.
• Different size breasts (a result of the lumpectomy 23 years ago).  Bras will never fit well.
• PET Scans every 3-6 months.  Prep work before.  Wicked ass headache after.  Can't wait for the next one.
• Jaw swelling.  Medication makes this happen about once a month.  It actually becomes painful to speak for any length of time.  For some of you this is a positive result heh heh.
• Hand tingling.  Have to stop often to hang my hands at my sides and wiggle my fingers to get it to subside.  Makes things like blow-drying my hair, writing with a pen, or holding my bow difficult.
• Low white blood cell counts.  Risk of infection all the time.  Resulting in neutropenic diet, use of lots of Purell, and carrying around a thermometer with me.  Just in case.
• Left ear clogs a lot.  A result of the jaw reconstruction from 2009.
• Pain.  Is it cancer related?  Injury related?  Aging related?  Spin the wheel.
• No IV's in the right arm due to lymph nodes removed in 2004.  23 years of picking on the same vein in the left arm.  Luckily it appears to be a hardy sucker. For now.
• Weight fluctuations.  I've been 98 pounds, I've been 130 pounds.  Yeah, you're all saying it's not something to complain about (I get it. I'm not fat.) but to me? It brings a whole mess of "adjustments" each and every time I go up or down.
• Brittle nails.  My manicurist is a saint dealing with these obnoxious digits.
• Dry lips.  I should buy stock in Aquafor with how much of it I buy.

OK I can probably think of more but I'm starting to depress myself (hey - there's another one!).  You get the idea - there is more to this disease than just the major surgeries and harsh chemotherapy regimens.  I'm dealing with a lot on a daily basis and...I just needed to share that.  #sorrynotsorry

So on to my latest "big issue."  Some months ago, it was discovered that the titanium hardware connecting my reconstructed jaw (the fibula bone) to my natural jaw had become exposed and the gum flap had deteriorated as well, leaving me open to infection and further depreciation of the tissue. It seems that it is quite unusual for those who have had this surgery to live so long after the fact (it's been 8 1/2 years) so I went for consultations with my original surgeons to figure out a solution.  Not as easy as it sounds as possible answers ranged from "let's just watch it" to a complete re-do of the surgery with a new fibula (Yikes!).  We decided on a middle ground - debridement of the bone, removal of the implants, removal of a portion of the hardware (assuming the bones had fused well together) and sewing up the gum flap, the goal being to keep the jaw functioning and stable.  I had the surgery last Thursday (a huge thanks to my brother Bruce for driving me in, bringing me home and taking care of Rory for the last 6 days) and have been recovering since.  Not as easy a recovery as I thought it would be, although Percocet helped!  In addition to the expected jaw pain I had extremely swollen lips (I looked like an over-collagened Kardashian) that are now grossly scabby; joint and muscle pain (a side effect of the anesthesia); and headaches.  Today is actually the first day I'm feeling closer to human.

This may not be the end of it however.  I go back Thursday for my post-op where we'll evaluate if anything further needs to be done. There was talk of possibly going for hyperbaric oxygen treatments for better healing. Truth be told, I am petrified of the prospect of doing the original surgery over again - it was horrendous.  The "good" news?  We're not dealing with a tumor situation here, just a "repair" that hopefully will last a good long time.

So there you have it, the big and the small, the major and the minor, the bad and the worse.  And you know what?  I've got 99 problems - but being dead ain't one of them.

Blessings and Love to All.