I'm pissed as hell and I'm not going to take it anymore

Over the last few days, I've been stewing in a silent vat of helplessness, self-loathing, and, above all, unrelenting anger.  It has been paralyzing. I've been ruminating about doctors, doctors' staffs, pharmaceutical companies, and the general rights and wrongs of the world.  A real hodgepodge.

But, no more.

This is my blog, and I can write about anything I wish.

Today, I'm choosing to rant about how employer-provided healthcare is affected by the Affordable Care Act.  And, I should probably say that while I'm not necessarily a proponent of the ACA, I do believe in and hope for universal healthcare for every American citizen.  But, really my position on this issue doesn't have any bearing on what I'm about to rant about.  Here goes:

I'm sick and tired of hearing how Obamacare is going to raise our healthcare costs.  However, I'm not naive nor do I desire to spin a political agenda that doesn't want to recognize that end user healthcare costs have risen and will no doubt continue to rise, but before you go pointing your finger at any political entity, make sure you've got your ire doled out in all the right places.

The health insurance industry decides what price to charge the employers who buy group policies to offer to their employees. It is, certainly, reasonable that as the ACA mandates new coverage requirements (like pre-existing conditions) to the insurance companies, the insurance companies must estimate the cost increases required to pay for these mandated changes and decide how to cover them.  They are the first gatekeeper in determining the cost of your employer-provided healthcare insurance, yet I've heard zero discussion of the power the insurance companies wield in determining our out-of-pocket costs.  Their bottom line is profit making through exploiting a market need, not offering affordable healthcare.

The next gatekeeper, whom I would hope carefully and compassionately determines how the ACA affects your wallet, is your employer.  But, once again, your employer is a profit making (or at least profit-protecting) machine too.  Once the insurance company passes its premium quotes on to your employer, your employer must decide what percentage of that cost they are willing and able to cover.  The remainder is what you pay every month for the privilege of health insurance.

ACA Mandates
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Insurance Companies (profit makers)
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Employers (profit makers/protectors)
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Your wallet

Is everyone in this chain acting responsibly, smartly, and without malice?

Don't worry.  My rants are far from done.  Soon...why you really might or might not be able to keep your primary care physician.

And hopefully soon, my newly diagnosed medication-induced-or-not diabetes will get under control enough for me to have my PET scan.  Estimate: in about a month. In the meantime, I'll just enjoy the many, many trips to the restroom to which my new diabetes medication is treating me. Happy Flushing!

No PET scan today

A standard preparation for having a PET scan is checking your blood glucose level.  It needs to be within normal limits (70-100) in order for the glucose contrast solution to work properly.

Today, my level was an inexplicable 256.  So, no PET scan today for me.  I've never had a level remotely that high, and there's no history of diabetes in my family.

I've got an appointment with my primary care physician tomorrow to start trying to figure out what's going on.  But, until my blood glucose levels are normal again, no PET scan for me.

The great irony is, a possible cause of the high level is one of the anti-estrogen medications I'm taking.  So, a drug I'm taking to keep my cancer at bay could be preventing me from getting the definitive diagnostic test to determine if my cancer is, indeed, at bay.

Or, it could be something else entirely different.

Sigh.

Festivus for the rest of us

First, a few disclaimers:  I struggled this year with what I wanted to be my responsibilities for Christmas and had a hard time balancing those expectations with my new normal energy level. Last year was so much easier.  I was going through chemo and had a bald head.  This year I have color in my cheeks and a full head of hair.  My only expectation of myself during the Christmas festivities last year was to show up.  This year, I thought I had scaled back from my pre-cancer life.  I thought I had kept it simple.  In actuality, I wore myself out.

Another disclaimer, the next couple of paragraphs have no bearing on my great affection for the friends and family with whom I shared Christmas.  They are merely my reflection of my frustrations (and fear) of where I am.

I think next year I'm boycotting Christmas and maybe taking a family vacation instead. Paul, the boys and I just had the nicest trip to DC for four nights. We did exactly what we wanted to do when we wanted to do it, and someone else did all the cooking and cleaning and driving. If only we'd added a few days on the front end to incorporate Christmas Eve and Christmas Day.  (Again, absolutely no reflection of those with whom we shared those two days.)

Two sets of friends we hadn't seen in a month of Sundays each drove at least two hours to join us for brunch on Sunday in DC.  And, we finished off the trip Sunday night with a nice Malbec at a Brazilian steakhouse and watched the boys stuff themselves silly with carnivorous delights.

Life is short (perhaps shorter for some than others). Do what makes you happy. 

Happy Festivus!


P.S.  I have my next PET scan January 2nd.  I should have the results by January 7th.

Tough old broad

Sunday night, just a week shy of my 49th birthday, something stunning happened.  I was called a Tough Old Broad...by my husband.  I'm sure he meant it in the most flattering way possible.

Let's break this one down, shall we?

Tough.  Okay.  I like that one.  Formidable.  Solid.  Knock me down and I get right back up.  When the twins were born, my mother began referring to me as 'The General'.  Keeping two infant boys in line required order and discipline.  Admirable qualities.

Broad.  Some might find it offensive, or perhaps just archaic.  Something Humphrey Bogart would utter about a co-star at the close of a difficult scene in a North African desert.  It has a certain heft to it, indicating a modicum of respect or street cred, certainly less objectified than 'dame' or 'chick'.  All in all, I don't mind it.

Now, I've had to really think about the other adjective and struggle not to take it out of context.

Old.  Surely, my husband didn't mean to imply that I am turning a corner at this upcoming birthday.  (I thought that was reserved for the next one.)  Perhaps what he really said was ole, which I could construe to believe is really rather charming...like Ye Ole Sweets Shoppe on a storefront in a quaint English village.  

Then again, 'old' is, well, old.  Old, as in, the arthritic twinges I'm starting to feel, the great pleasure of an early bedtime, and shaking my fist at those darn kids speeding up and down our street.

But, let me tell you what old really is. It's knowing what's important and what isn't.  It's knowing the things you can change and accepting the things you can't.  Old is reveling in being able to look my children in the eyes without bending down or picking them up.  Old is the comfort of lying in bed beside my husband for over twenty years worth of nights.  And finally, old is being able to add on another birthday, when I wasn't so sure last year if I'd be able to.  Old is good.

And to celebrate its goodness, tomorrow this Tough Old Broad is flying out solo to visit her BFF for five glorious days.  (Don't worry, Paul.  I think the gynecological oncologist removed the remaining wild oats I might have sown...wink, wink.)

  

Sometimes, baseball is the best medicine

Hey, look!  My panoramic lens works!

Game 1 of the division championship series. The Braves stunk it up.  I'm still sore two days later from the walk from the car to the stadium and back.  The game didn't start until 8:30, so we didn't get home until after midnight...on a school night.  

But, it was marvelous getting out on a cool fall night at Turner Field to watch the boys of October.

Keeping the faith

This morning I drove in to the hospital to have my port flushed.  I get this done every six weeks when I'm not having chemo to make sure it doesn't become clogged. I'll probably continue to have this port until I've gone five years without a recurrence...maybe longer.  It's been there nearly a year now, and I've pretty much gotten used to the feel of it, the lumps under my skin that allow easy, mostly painless access to my subclavian vein.

My change of gynecological oncologists a few months back came with a change of infusion centers.  I'm now in a large hospital center, rather than the small suite run just for the patients in the practice I used to go to.  This also means cancer patients of all kinds go to this center to receive their chemotherapy. It's a big place.  Quite a sea of cancer-riddled humanity.

I guess you could find it depressing, but I don't.  It's a comforting place for me.  Patients are being brave and doing what they need to do to fight their disease.  Most people have a friend or family member with them, sharing the time, whether attempting to play a game of Scrabble or just sitting quietly watching tv.

As I'm led to the back of the facility where people with quick procedures like me are handled, I pass numerous bald and capped heads, eyes sleepy from the pre-meds meant to prevent uncomfortable side effects of the chemo drugs.  It feels a bit odd to seem like a graduate of this program, my thick curly locks a testament to the time I logged in one of those reclining chairs, IV pole to its side.  I have a slight desire to point out my port scar as I pass each patient, as if to say, I'm one of you.  I'm just done for now.  Keep the faith.  It gets better.

Me and my short curly locks

My new normal

Since school is back in full swing here in Georgia, I can no longer use the summer hiatus as an excuse for not blogging.  Truth be known, I just haven't quite known what to say.

People ask me how I'm feeling, and I'm often stumped and just say something socially acceptable, like "really well, thank you."  Sometimes I do feel really well.  Other times I feel confused that I'm not feeling on top of the world.  Then, there are other days that are still full of fatigue, hot flashes, insomnia and general bad moods.

Luckily, I've had some wonderful days...days when I don't think of cancer.  Warm summer beach days under an umbrella with a contraband tropical drink and my Kindle, glimpsing up occasionally to be sure my boys haven't drifted too far down the beach in the waves.  An evening of parental pride, watching a band camp final concert, one son on trumpet, one on percussion.  Dinners out with old friends.

But, there also have been days when I just want to crawl back under the covers...which I do as often as I can manage it.  A hefty dose of guilt usually accompanies these days.  Shouldn't I be out living each day of my remission to the fullest?  These are the hardest days to navigate.  

Then I also have some general good days.  Days when I feel like cooking again and helping the boys with their homework and going out to lunch with a friend.  I can now grocery shop without feeling like the walking dead as I roll my cart out to the car.  

I can walk over a mile now or last for 20 minutes on the elliptical. My hair is coming in VERY curly, so curly that it's hard to appreciate the growth because the curls are so tight that additional length is hidden in the spirals.  Some days I like it...others I feel like I got a bad perm.  Funny...I think the process of growing my hair back in is more traumatic to me than loosing it at the start of chemo.  But, I must admit, I'm glad it was back in time for the hot part of the summer.  I didn't relish the idea of wearing any kind of head cover in 90-degree weather.

So, this is me.  Just making my way through this new life of mine, looking for my new normal.