Sunday, September 11, 2016

I Forgot I Had Cancer

My mirror last week
OK sure, you could go into remission and forget you ever had cancer. . . but I still have growing tumors all through my abdomen, and I'm terminal, so for me it's never going to be a thing of the past until I fall off my perch.  

Is there any way that I could forget about cancer, too, like you Remission People?
YES!  And yes, I really did forget about cancer! And still often do!

I've been dealing with cancer for so long that I finally came so entirely full circle that I forgot what the root cause of all the commotion was about.

Diagnosed in 2014, it was clear that I was terminal by 2015 (or sooner) 
July 2017 is my "drop dead" date.   
But now it's September 2016.  10 months left to live.  

So. . . OK, am I getting horribly sick yet?  Actually, no, not really.  I should perhaps be languishing right now, personifying a flapper girl flung in anachronistic despair on Edwardian furniture as an Edward Gorey sketch -- but I actually don't feel very sick. At all.

Me and Picasso at NSLM
To be honest, I have two tumors that I can feel, and starting a week ago they feel like oww-y bruises. Lately they often hurt enough to where I have to take an over-the-counter Tylenol or Motrin or whatever.  
But I'm certainly Not Dead Yet. 
Until a week or so ago (when the owwies began), I had started to forget that I even had cancer.

I'm on a clinical trial, and I don't get to take the trial medications unless my bloodwork comes back as "good."  Chemo works the same way. . . if your body can't handle it, they hold off further treatment until you're recovered enough for the next round.

My latest treatment delay lasted for well over a month.  That's a month without hospitals or scans or "infusions."  Sure, I popped onto my local (rural) lab for impromptu no-wait blood tests, but that was 5 minutes per week with my local (love them!) lab girls. 

Some of these foreign projects need more help than I can give!

But this whole "ooh! scarey cancer. . . eek. . .terminal. . .oh no. . .here it comes. . .ugh!"

Well, it's just not really there for me, you know what I mean?  I haven't sat and looked for what to expect from my dying days from google, it is on my list of projects but compared with "saving an endangered breed" or "writing to my 80-year-old mom and dad" or "supporting colostomy newbies", on top of the very obvious family and friends, looking into my personal death throes is not particularly motivating.



Sleepy sometimes

I'm working to put my hubby and kids in the best positions they can be in to weather my death.  
I'm tidying the attic, getting my businesses in order. . .  (My jobs don't pay, but Still. . .) but my files are all pretty good already. (already all-Ready? Ready for. . .)

But all of these thoughts and preparations -- remain a little strange for me. . .

I AM dying from cancer, but apart from needing an afternoon nap and maybe recently needing one ibuprofin a day, I'm still driving everyone crazy because they they think I'm a little too "bouncy."  
It's not ADHD, I'm focused.    
It's like "manic depressive" without the depressive part.  
These days I have naps and Nap Hard.  But when I'm not asleep, I am definitely awake.


Now that my hair is back (not really 'back,' it's short and grey and curly now; my old hair was long and brown and straight -- miss it! -- sigh. . .)I am no longer recognizable as a cancer patient.  So my impromptu stranger-in-the-street support network has vanished, and this change also helped wipe out my daily identity as a cancer patient.
I have become well enough to resume farm chores, and driving duties, and laundry, and cooking, and cleaning and almost all the rest. 

My family came to help when I first had surgery, and they saved my life.
Now they come to visit and help, but I suspect that maybe now that I'm over surgery and not on the heavy chemos, I exhaust them.  
"Larger than life" said one sister of mine, finding a sweet way to verbalize my overabundant energy.
"Too much" says another sister, knowing that her comment couldn't hurt me, ever, based on our long love and closeness as sisters.   But she had a point.

Swim with piranhas only when needed
My latest Clinical Trial, at this time, does not seem to be working. I still think I chose the best one, and time will tell. . . but I'm losing confidence in this cure.
My North Carolina doctor for the first time this week seemed to be working to help keep me in the clinical trial.  A refreshing perspective, after the most recent visit, where she mentioned "other treatments" if this trial didn't work.  "Other treatments? I'd like to see those!" I laughed, knowing that there were no more treatments that she could offer.
The doctor laughed too, along with me. (are you laughing with me or at me?)
End of topic.  
And, also, end of my already-challenged confidence in this doctor.
My brain is already starting to put North Carolina into a surrealism category. It's a helpful step.

My doctor at the University of Virginia would not have laughed, she would have discussed any possible alternative treatments with me immediately. In fact, she already did, months ago. And even if there were no more treatments available, laughing would NEVER have been an appropriate response for her, no matter whether I laughed, as is my personal approach to it all, or not.  
My UVA doctor does laugh and smile a lot, with me, at appropriate times and subjects.  
The "hahaha there's no cure but I can laugh with you on that one"  is completely left to North Carolina medicine. UVA abandoned that approach many years ago (Perhaps with Jefferson? Or when Poe was a student?). 

How could you just drive by?
 I never knew about chasing waterfalls until I took this photo on my way back home from UVA, and I four-wheeled up the back roads to find its source.  I was alone. My family would never have agreed to the waterfall hunt, and only half of my friends would. . .


I'm not in remission, my tumors are growing, but for now it feels as if my cancer is gone. 
Or rather, it feels like it's something I don't really have to deal with for now. A stock-still stream if you ignore the rapids. But some of us, for some reason, need to feel ALL of it.

Oh no, is this like that scene in Verdi's La Traviata where she sings "Spasmodia Arrette!" , wrongly believing in the disease-signature last burst of energy before she keels over from consumption?   Awk!

(Note to Self: Buy a cool white flowy nightie as seen in Zeffirelli movie version of L.T. to ensure beauty during swan song, versus dying in present scruffy nightwear).



Rachel Patten Stand By You:
https://www.youtube.com/watch?v=R4KkBxv0VpY