The character of light

From time to time I think of regrets.  It’s amazing, the memories that come to mind when mortality is threatened.  Even with death at my door on a daily basis, I can’t muster the discipline to describe all the things that have meant much to me.  Perhaps it’s from knowing they mean nothing to anyone else, and do I really need to see it on a page to recall it?  Doesn’t the retelling diminish the accuracy and quality of the memory?

There is a certain light, in midafternoon, that seems to fall over large landscapes like Wyoming.  I’ve seen this light elsewhere, but not in the bright yet muted gold that blankets the Rocky Mountain states in a lazy, forgotten  way.  It’s the light that renders an ugly rock in Salt Lake City absolutely stunning in Moab, Utah.  The rock of which I speak was dusty lavender flecked with gold and rust, shimmering in the open sandstone seas of Moab.  We dragged it back to the city and it was dull as mud and just as unattractive.

This golden light, accompanied by afternoon breezes tinged with chaparral sage and pine, filtered rough days and washed over less-than-ideal situations.   It softened the hard edges of doomed relationships, making them appear tolerable while they were happening.  In retrospect, it might’ve been better if things weren’t so romanticized.  I see photographs of those days and feel a bittersweet mix of enlightenment and regret.

I love that light, though, and occasionally glimpse it here.  The Hubby and I went kite-flying last Sunday.  The kite danced an aerial arabesque against massive, billowing clouds in a bright blue sky.  I recalled the golden light pulling the landscape into sharp focus on a similar day in the Tetons.  This was not the same light, but the feeling of joy in the moment and sadness for the long term was the same.  I knew then, as I know now, that this may not end well, though not for the same reasons.

Sometimes it’s best to let things wash over us like a tide, taking with it what it will.  Maybe the tide will roll in and take my disease, and regrets, away, leaving golden flecks in the sand of time, for me to cherish another day.

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Relief, for a minute

The insurance thing is solved, for now.  Kaiser Permanente (my current insurer, an HMO) has accepted me into a conversion plan (I’m sure they don’t want to, but the law says they have to…), so for an arm, a leg, and part of my brain, I remain covered as before.  What I’ll miss from my old (CA Judicial Services) plan?  Lots.  Like no co-pays for hospital stays, imaging services, labs, etc. and $10 for any drug, brand or specialty included.  This plan is $333 more per month, yet I actually have to pay (quite alot) for services I previously never had to, and drug prices are tiered.  That’s “Insurance Rules!” for ya!

Why am I paying through the teeth again?  Pricey oral chemotherapy drugs, the possibility this will be a substantial year for ongoing treatment, not having to look at piles of bills for different things, the convenience of already knowing how things sort of work—

I think, if I choose Medicare I could go to a new set of providers, maybe choose UCSF, etc.  If I got a good Medigap insurer (there are 10 plans and several insureres) I’d only have to worry about the Part B (Medicare health insurance), gap (probably Plan F, which is the most comprehensive), and Part D (drug coverage insurance) premiums, and the $4550 out-of-pocket drug max.  Do all those things add up to the premium for Kaiser’s conversion plan?  Probably.  They both have advantages and disadvantages that I probably haven’t scratched the surface of yet.

Another pitfall is, if or when I decide to enroll in Medicare Part B, I’ll have to pay the penalty for not enrolling when I became eligible (which is now).  The penalty is 10% times the number of years I didn’t sign up, so if I go a year, it’ll be $11.50/month more.  If I live more than another year and choose to go on Medicare, I don’t think I’ll complain about that sum.

So on to clinical trials, air purifiers, getting well, traveling…

Done being zapped

To those who’ve had to endure weeks on end of radiation, I salute and admire you.  I barely made it to my last treatment today.  Granted, it’s 30 miles away, and in inclement weather, that’s a long way to drive when you don’t feel too well.  (Which is why you get someone to drive)  It’s only been 2.5 weeks but I was counting down each day.  In spite of the wonderful therapists who could’ve become friends, I need a break!

I hear eight weeks of treatment is typical.  One could really get to know those folks, given some effort.  I had a rotating set of therapists: Madison, Colette, Maureen, Maria, Frances, and David, and the nurse Edward.  The Friday before Valentine’s Day weekend we chatted about weekend plans.   Before I left Maureen gave me a hug, proceeded by Colette (who called me, “Little Cougar”).  I was moved.  I think they read my file and discovered I was stage 4.

I received a “Purple Heart Award” today, certifying completion of radiation treatment, signed with kind words from some of the staff.  I don’t know if all radiation centers issue a funny thing like that, but it’s sweet.  Once I feel better I’ll bake them some brownies.

Today was a strange weather day: Brisk, sunny, partly cloudy, a few showers, and a huge bucket of 8mm hail that probably pitted my car.  The girl cat got pummeled and the landscape made white with mini ice marbles.  I blew through it as fast as I could, came home and cooked a huge pot of Jambalaya.  Mike built an enormous and beautiful redwood box for his worm farm.  Yup, bait for fishing and help for the garden.  I’d love to steal the box to grow herbs in, but there’s not much sun in the backyard right now, and he doesn’t want it out front.  So I’ll just have to envy the earthworms their redwood palace.

I stopped working on the insurance thing last week.  Fatigue hit me like a freight train.  It was all I could do to stay awake past 9pm, which isn’t like me.  Part of the exhaustion no doubt stems from the labored breathing.  I should be more concerned, but I have so much on my plate I don’t know if I’m coming or going.  I need to try to knock these things out one by one.  I can’t concentrate on anything and the lack of resolution is driving me mad.  Can anyone recommend a particular portable air cleaner?  Thinking of buying one.

I’m supposed to have been “getting my affairs in order”.  Yeah right, if I die suddenly it would inconvenience Mike just a bit.  So I better get on the stick with all this and quit watching my latest guilty pleasure: Wonderfalls.  Another short-lived but incredibly well-written (and acted/directed) tv series made in Canada.  It was co-created and produced by Bryan Fuller, creator of Dead Like Me.  He also created Pushing Daisies, which garnered him an Emmy or two.  I couldn’t get into Pushing Daisies a few years ago but maybe I’ll try it again.  (If you watch all three you’ll probably notice some overlap in themes, actors, names…)  Anyway Wonderfalls only went to 13 episodes but it’s very clever.  (I can totally relate.  Not just because I worked in Yosemite and Jackson Hole and was/am an underachiever.)

My other guilty pleasure is An Idiot Abroad, Ricky Gervais’ latest comedy production disguised as a sort of travel show.  It makes me laugh so hard I cough.  Which is awesome, but scary.  Also, the animated feature, Coraline, in 3D is amazing!  Ok, tv talk.  Next week I plan to make lemon and lime curd.  Or maybe marmalade 😉

Time to hit the inhalers.  Tomorrow is my first day “back”— I can sleep in but I also have a zillion things to do.  Who would guess this is what it’s like to be terminally ill?  I need to survive just so I can get it all done!

Radiation…and fishing

Today I took time off from the grind of health plan research to do some early morning fishing and walking the lake with Hubby.  We struck a deal a couple of weeks ago, when he consented to a walk around a nearby lake if I’d agree to fish with him.  We’ve eaten some great trout from this lake, and now that the ocean-going boat is gone, Hubby misses fishing.

Last weekend we rented a patio boat and celebrated Hubby’s and my brother-in-law’s birthday on the lake.  Today we were again accompanied by my sister and brother-in-law, but she was unhappy with the strenuous walk (I’m encouraging her as part of her smoking cessation program and the brother-in-law with three new organs has managed to grow a massive beer belly in the year since his transplants so he needs to move around some) and Hubby couldn’t take her grouchiness.  Nonetheless, it was a warm day and fabulous to be away from the house and health insurance stress.  I felt relaxed for the first time in weeks.

Radiation treatments started this past week.  It’s a short course – 10 days.  The processes are fascinating and peculiar.  I don’t know if I’ll ever remember the names of all the therapists – they come and go, everyone does things a bit differently.  It’s a little nerve-wracking, not knowing why none of the positioning numbers seem identical from day to day, why one day they take measurements and the next day they draw marks on my body.  I thought that’s what the tattooed points were?  One just has to trust.

I’ve developed a suspicious dry cough which I believe has nothing to do with the lesion being radiated.   The grim reaper is relentless in his/her teasing.  I catch myself thinking about the world without me in it, imagining my husband playing video games, my friends going to Paul Weller concerts…and I’m just not there.  Life goes on.

During radiation, when I’m splayed out and immobilized by the shrink bubblewrap, or at the lake today, or during the deep meditation experienced during acupuncture, my mind is flooded with a strong desire to survive.  As if repeating the idea might cause it to occur.  I wish I knew what to do to effect a transformation in my body to the point where the cancer couldn’t progress.  I continue questioning the issue of diet.  I’ve made many changes but have never gone to the extreme of becoming completely vegetarian, giving up dairy, going raw, etc.  I hadn’t eaten eggs or processed meat or even bread for awhile, but today I had an egg and bacon sandwich at the lake.  It was good.  I’m stage IV, for crying out loud.  Shouldn’t I cheat once in awhile?  I passed on the hot links and fries and had dried peaches for lunch.  I mean, come on.  I came home and inhaled a bowl of beans stew, I was so hungry.  I’ve been juicing my little heart out for two weeks, and I’ve lost 5 lbs. as a result (no, it’s not the cancer).  Moderation is difficult when you wonder if the things you enjoy, although not terrible, make a great difference in the control of your disease.  It’s like a little kid being told they can’t have ice cream, pizza, ground beef tacos, cookies, french fries, juice boxes, fun cereal…I’ve given all that up…but once in a while, dessert calls to me in my dreams.  Or barbecue.  Because tomorrow is the Super Bowl.  Or potato skins.  What’s Super Bowl without snacks that are really bad for you?

Edit:  Had ribs and potato salad for Super Bowl.  I was miserable for two days.  Just couldn’t get it out of my body fast enough.  I had to drink a liter of carrot-cucumber-apple-brussel sprout-orange juice to detox.

In search of insurance

My Cal-COBRA health coverage is ending, and although in theory I could transition to a “conversion plan” (whose premiums are astronomical), Kaiser’s basically trying to force me into their Medicare (Advantage) plan.  It says right in the Evidence of Coverage, “This plan is not intended for most members eligible for Medicare.”  Of course not.  And although Medicare looks great at first—really low premiums, semi-manageable out-of-pocket expenses, most things covered, it’s not ideal for those with catastrophic illness.

My friend Naomi was advised to keep Original Medicare and purchase a Medigap policy and Part D (Prescription Drug Plan).  On the one hand, one would still be able to purchase expensive oral chemotherapy (like Tarceva) and limit yearly prescription out-of-pocket costs to $4550, at which point one enters “catastrophic coverage” and a drug that was $4500/month can now be had for $12.  On the other hand, Medicare Part B (health care insurance) has NO  out-of-pocket limits.  Most chemotherapies prescribed are IV drugs, for which physicians get a “kickback” from pharmaceutical companies.  These drugs are also very expensive—for example, Alimta (Pemetrexed) costs anywhere from $2600 – 3500 per infusion.  I received infusions every three weeks for two years, and my oncologist is considering returning me to that therapy if the current radiation doesn’t control my progression.  I can’t imagine paying 20% of $3000 every three weeks, with no cap.  That’s crazy.  This is where the whole “Death Panels” thing emerges.  Insurance companies try to push an “expensive” patient into a corner where they can’t afford treatment (even after they’ve sold the farm to do it) and they just have to die, or move to a country with socialized medicine.  I may have to move to the Netherlands (I say this because my husband’s pretty much guaranteed a job there), or Canada, or hell, some state with stronger insurance laws that favor the patient.

I’ve spent many hours going over this issue, which I thought was going to be fairly easy since I’m HIPAA certified, or “guaranteed issue”.  Not sure I can be denied “good insurance”, but they’ll make me pay almost a thousand dollars to get it.  Why would I pay that?  How much is not having to wade through bills worth?  I don’t have any assets and I don’t want my husband to be straddled with my debts long after I’m gone.  Would I rather pay an extra $300 a month or have $25k in hand when the poop hits the fan?  It’s all fine and good if one knew WHEN things would hit, but one doesn’t.  So the concept of socking money away in a high-deductible HSA doesn’t work too well for catastrophic illness because of the high annual deductibles and fairly high out-of-pockets costs which can wipe out the entire account in a year.

It’s peculiar that this video was produced by the Kaiser Family Foundation.  Kaiser Health is no different or less ruthless than other insurance companies in terms of excluding those unable to pay.  Granted, their services are more affordable than most, and they’ve come a long way from the ill reputation they previously had, nonetheless it resembles Martha Stewart’s daughter’s reality show whose premise was ridiculing Martha.  Or maybe it’s a strange, underhanded way of saying those “other” insurance companies aren’t nice, but Kaiser, with its all-inclusive-type benefits, is superior.  My brain is too taxed to ferret it out at the moment.