Clarity, or maybe just delusion

"Lust…is cool.  Yeah, it's really cool…but love and nurturing — are better." — Dr. Simmons (the onc)

An odd preface, I know.  It's a lovely late summer day, breezy as usual, with birds chirping and Coast Guard helicopters punctuating children's screams.  This neighborhood is all kids!  The Hubby's diving in Monterey today and Pt. Lobos tomorrow with his dive buddy RM (stands for Running Man), our previous next door neighbor.  I used to be fairly good friends with RM's girlfriend (partner or whatever but "not wife") until about three months ago when I'd had enough of her various and sundry manipulations and withdrew from almost all activity connected with her.  Alas, I have to be civil as her significant other is Hubby's friend and dive partner and relations must be maintained.  I begged off this trip and Hub knows better than to try to defend her.  He's already been in trouble for succumbing to her guiles—I don't think he wants to go another round with me on this.  I remind him that one of the rules I was told when this cancer thing struck was, when you have a terminal illness, you no longer have to put up with any shit—you don't have to do all those horrid, obligatory things, make nice with toxic people, etc.  So I'm courteously distant.  She's probably charming him to death with her good looks and endless babble.  She's like a character in a novel, maybe House of Mirth?  Same issues, to be sure.  Lucky for her, RM is sufficiently stumped to tolerate her last three years of self-chosen unemployment.  Anyway, that's another post.
It's not often I have the time to sit in the backyard and do what terminally ill people are wont to do, which is reflect on their lives.  (Speaking for myself, I guess, as perhaps that's not universally true.)  All sorts of crazy memories wash in at the strangest moments—things which undoubtedly fill journals packed in the garage somewhere.  I should find those and read them before I pass.  It was a short period of my life though, high school and college, and I don't mention too many family events.  I took family life very much for granted and wasn't too observant or interested.
It's sometimes difficult to write about cancer.  There's a part of me that wants to be personal and emotional and there's the part prevented by a public audience from speaking with too much honesty.  I really don't talk about my illness much anymore.  It stresses people out, makes their eyes glaze over.  I don't discuss the really strange self-care strategies I've resorted to because of this illness.  The Hubby made a hilarious cartoon about how I have a bathroom emergency whenever we're in public.  But really, it would suck if I were somewhere inconvenient, like the countryside or touring an ancient ruin in a foreign/third-world country.  Then reality hits and I recall how lucky I am that I still have a modicum of control over those systems.  Someone I know does not and I could be headed there soon.
I'm not being pessimistic.  If anything I'm complacent, due to the extended good health Tarceva has allowed me.  I need to wake up, realize I'm on borrowed time, and act like it.  People make plans all around me, forgetting that I may need treatment in a week or a month, that I may not be well at Thanksgiving or Christmas.  They forget I can't wander around all day, without rest and shelter from exposure.  The hardest thing is trying to understand what it's like to have numbered days.  I couldn't imagine death or fear or incapacity and had lost grip of following my dreams until my diagnosis.  So I can't expect anyone, not even my husband, to understand what it's like.  There's a deep sorrow that can't be explained.  For me it's a sorrow for all the things I won't get to do, and all the things I don't have the energy to do now.  There's a clarity, true—the kind I had a bit of when I was very young—the kind that values hedonism and encourages leaps of faith, that revels in the moment, that thrives without material indulgence.  That sort of clarity requires energy and impulsiveness, neither of which I have, so yeah, it's frustrating.  I no longer lament the missteps of youth which prevented me from being a financial success in mid-life.  On the contrary I'm thrilled to have engaged in so many amazing adventures, even if they're amazing only in my own mind 😉  I wish I'd kept it up and not succumbed to the mediocrity that chasing money reduces one to.
As always, I'm not ready to go.  Neither is anyone I know battling this wicked thing.  Sadness at loose ends and unfulfilled hopes.  I guess I'm not much of the type of person that rallies for a cure and all that.  I wish I were, and maybe I would be if I weren't the ill one.  My rallying is with the universe, to show us the way to healing and a better life, and to a cure as soon as possible.  So get with it, Universe.  

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The three days of summer, 2010

Holy smokes, it's hot.  

Let me qualify that.  It's normal compared to where we used to live, just 13 miles away but always 10 degrees warmer.  Long-suffering friends in southern Cal's Inland Empire report 110 degrees today, so my measly 96 103, albeit the warmest day of the year for this frigid island, is like a breath of fresh air if you're inland.  Having run the heater every morning for the past three weeks due to morning temps in the 50's, this is actually a welcome change.  Finally, shorts!  For the first time since we moved here in June.  Max the skinny special needs kitty got a bath!  The windows are open and the fans are a-blowin'.  So bizarre.
It's been two months since we moved and I'm at once overwhelmed with projects yet wonder if there's any point beating myself up trying to organize and beautify this house whilst racing against time and battling cancer.  With my other cancer comrades negotiating thin ice, I can't help but wonder when this journey of pretending I'm alright will reach its turning point and all this effort will seem meaningless.  
What would be the best use of my time (the time I have left)?  Tons of things left to do…tasks, not "fun" things.
Sometimes it feels like those around me have somewhat forgotten how ill I really am.  They're accustomed to a high functioning person.  They don't witness the myriad side effects that hamper my life and occasionally my morale.  Let me just bitch about it for a moment.
I haven't had a haircut since I was on chemo break a year ago because my scalp is covered with scabby hair follicle sores (Tarceva).  This has also cause areas of balding, but mostly it hurts!  I haven't had acupuncture since June.  The oncologist has given me five referrals and feels it's time for someone else, like a PCP, to refer.  Hence, pain.  I could use a massage but haven't had one since April because again, thanks to Tarceva, my skin could be scary to someone unfamiliar with chemo-induced skin toxicity.  Again, no pain relief.  I'm on an antibiotic for the skin condition and it's probably ineffective by now, but I'm still incredibly photo-sensitive.  Emergency bathroom runs?  Yup.  Fucked up toes?  Affirmative.  Short of breath?  Sure.  Facial hair?  Chewbacca.  Freakishly long eyelashes?  That's the only good side effect, but I'm sick of being asked if they're extensions or if I'm using Latisse, and being told just how lucky I am to be blessed with these eyelashes.  As a side note, the eyelash follicles get scabby and inflamed just like all the other hair follicles on my body.  All 40 million, or however many we're supposed to have.
I'm pensive, confused, apprehensive.  I feel like I have to stay alive to hold things together—for my family, mostly, and a bit for the Hubs, although he's the great adapter.  It's probably just self-flattery, things always go on.  Which is why I shouldn't give a shit about whether the house is pretty or any of that.
I just wish I could find shampoo/conditioner that would improve my scalp, lotion and face cream that works, without those EWG-designated scary ingredients, and whatever my calling at this stage is.  I feel like I'm asking for a unicorn or for Six Apart to actually invest in Vox.
I don't really have any reason to complain.  I seem ok, although I'll find out come Sept. 1.  It's not in my brain yet, and my heart goes out to Naomi and Caroline for what they've been through/are going through.  I pray each night for something to help us all…

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