Click!

With stage 4 ovarian cancer, you get tumors. Little lumps. Lots of them. Too many for surgery, unless your surgeon is a pac-man.

I have low-grade ovarian cancer, kind of rare: it grows slowly. The cancer cells are so very much like my normal cells.  So my immune system cannot recognize them, and chemo isn't really geared up to differentiate them from my normal self (so most chemos don't work).  The sole benefit is that my low-grade ovarian cancer cells grow slowly, almost as slow my other cells.  
But not quite.

just arrived. . .

I have hundreds of mini tumors in my abdomen.  The big ones are starting to hurt. I finally got to address this at the hospital, in for my colon, but they had to hook me up to IV painkillers.  

"So, what's the timer on this?" I asked, as an obviously veteran patient. "10 minutes" the nurse responded.  Essentially, then, I could lie in my bed and every 10 minutes I could click the button and more IV pain meds would flow into me.

Hmmm. . . Just Click?  OK.  Wow, it works!   Oh, check out the clock on the wall--another 10 minutes has passed!  CLICK!    Cool!


It was New Years Eve.  
I was a little bored, I admit.  click!  and midnight was approaching   click! click!  
And at this point I had no idea that, unlike most people, narcotics act like amphetamines for me.  click click click!
So I was up all night, clicking the button every 10 minutes, flipping through ideas and walking a lot,  click click,  bringing my IV pole with me to walk great hallway lengths, to keep my colon going.  Click clicking all the while. 
At midnight I took all the New Years Eve group photos for the nurses on their flurry of phones. Click click!  
Finally crashed about 6am, doctors arrived at 7am. Yup, woke up a little blurry. . .

My medical team (doctor, nurses, interns) arrived having obviously already reviewed my painkiller "click record."  (Gotta love those interns!) 
I didn't know that there would be a Pop Quiz.
"Did you use the available painkillers?" they asked sweetly.   What was that about?  They know I did, they know I clicked my way all through the night and quite happily into dawn!.  "YES!"  I said. "And it was the first time in months that I spent with absolutely NO pain! It was REALLY NICE!"

My bed is the messy one.  

Then my oncologist stepped in.  She knows I have unused bottles of low-dosage narcotic painkillers from years ago. I explained my extreme fear of narcotic addiction, which is why I haven't used them in the 3 years that I've owned them.  But she wants me to live life with no pain.
Her response to my fear of addiction was, "It doesn't matter."  And advised me to use my oxycodone to continue my pain-free fun.

"It doesn't matter?"

Getting hooked on narcotics "doesn't matter?"   
Bull.  I have kids.  Every single move I make, every mood change, matters.  A LOT.

So for now, I think I'll start with an ibuprofen or a naproxin or a glass of wine and take it from there. I think I can mask pain to a certain point.  Accept the new normal, use narcotics only infrequently.
When I think of all the other pain out there--a deceased spouse, missing front teeth, an unpaid mortgage, a brother lost to drugs, a country and culture sent to the winds with so few members left that the language and history might not survive.  For me, right now, I have a bellyache.

I think I can live through cancer, for now at least, without major narcotics.
But I think I will take viticulture a little more seriously. . . and often!

Thomas Jefferson's 18th century historic vineyard is only 10 minutes from University of Virginia Hospital, and en route to my clinical trial in North Carolina. . .Mmmm!

But deep down I know it's just a question of time before I'm pressured enough to join a click.


 










 

My Last Fireflies

Our creek, "Little River."  We're on the right, neighbors are on the left.

Our house sits strong and solidly on a hill that terraces down in slow, grassy folds into a creek bed. Across the creek, trees climb the rocky bank up into our friendly neighbors' lot.

From my bedroom window, I see their trees stretching up as they have done since before any of us arrived here. Sycamores, pin oaks, white oaks, pines.
From my pillow, I look out onto summer nights filled with thousands of fireflies blinking in those trees with the randomness of nature that electric Christmas lights hope to, but never quite, capture.

It's October now, and the nights are getting colder. No frosts yet. But I looked out last night from my bed and the fireflies had gone.  When did they go?  While I was in a fever for two weeks?  Or while I carelessly enjoyed good health before, and forgot to appreciate them daily? 
And so the joy of my summer nights has gone for the year.     But I don't have another year.  
So I'll never get to see pretty fireflies again.    Ever in my life.    Never again.

How sad is THAT?

Well actually, once I stopped the wallowing-in-self-pity mode, It was OK. 
My sister Laurie has Thai friends reading this blog, and maybe they've never SEEN a firefly (well actually fireflies might be a national Thailand pest but how would an American ever know?)  :)
I remember age 9 in England, we used all of our childish resources to try to explain "snow" to our new non-English-speaking Egyptian classmate. We all adored him. But one day he never came back to school. Did he go back to Egypt? Even the school administrators were at a loss. He was transferred to a different school or home or country. And I always wondered. . . after all of that, did he ever really believe in snow?

Fireflies and creeks and trees and snow and countries I've never seen are the loves in life. And once we get into the emotional loves, it's all so much more. And then we go spiritual. Wow.

After half a year of fighting to get my clinical trial drugs (nivolumab and ipilimumab), they didn't work. No regrets. . . it was a GREAT choice. They just didn't work for me (they are curing thousands of other people).  My tumors are growing, my CA-125 (cancer count) is growing.  So I stopped taking the meds.

104.9 F = 40.5 C  Wow!

The side effects after the last treatment kicked my tail.  My super-high fever had me into the hospital for a few days.
But then I was admitted to the lovely University of Virginia Hospital Cancer Ward, with one super-trained nurse and one assistant per 4 sleepy patients.  Nice.

So now I'm off the clinical trial meds, and detoxing. And also getting off the steroids (yucky prednisone that I actually needed to quiet odd things down a little). Ugh.

But every day that I have less chemicals going into me, I become more myself again.

I can see why some people refuse cancer treatments now. The physical and emotional and mental effects are hard-going.  You spend months in sickness and mood fluctuations and spacey lack of comprehension and often without fluid thought.  Personally, I'll keep plugging on with meds, and just deal with the rest.  But I completely understand the merits of the opposite perspective now.

I'm not a pack-rat at all, but my original vinyl record collection is still pristine! My lovely husband gave me my dream present--and I can use it anywhere. . . including in my bedroom once I can only dance in bed! LOVE IT!

I have another treatment option coming up. It's the last bullet in my GYN Oncologist's arsenal.  Hormone therapy.  It worked for a few of my doctor's low-grade ovarian cancer patients. As director of Gyn Onc for UVA, my doctor has hundreds of patients.  "A couple of successes"  means I have a what, 1 in 400 chance of responding?  And that's all she has left to offer.  It's not her fault.  They haven't cured cancer yet.

I got the prescription, but we're wiser now. I'll start when I'm ready, once I feel I've detoxed off the other stuff, once I'm braced for a potentially mood-altering drug.  After all, at this point, a week or two won't make a difference. 

Cool, Huh? Global population 750.

So before I start the next regimen, I'm having my annual GOAT PARTY!!  Endangered heritage breed, national event (well, our numbers are so small we can only really BE national, yeah?), and I'll be OFF any chemo drugs and into my old self!!  Everyone is showing up because they know I'm terminal so it's the last party.  Even my professional Kentucky BBQ guy is showing up to man the grill  (he hasn't had goats in 5 years!)  It will be loads of fun, and I'll be chemo drug-free and back into healthy hyper mode.  

But there is a certain calm I have now that I never had before, a peaceful acceptance that comes from terminal cancer.

Once the sun goes down and the party keeps going until midnight as usual, nobody will pause to wonder if snow is believable to young Egyptians.   
No one but me will notice that there aren't any fireflies in attendance -- no one could imagine that while they're chatting and laughing at a table of wine, I'm mourning the beautiful green-flashing fireflies as a treasure that I'll never see again.

But I think I'm OK with that now. 

Function (noun): ability to --. dressing for a --; mathematical solving of a--;

Eye drops add a flourish of color to brighten any ophthalmology waiting room.

Function (noun): ability to --; dressing for a --; mathematical solving of a--.
Or what cancer people often want to know is, "can I actually still function?"

Function (noun): ability to function:  My stomach-cancer friend was diagnosed and then went in for surgery. They removed his entire stomach. They followed up with chemo but halfway through he said "screw that!", he had gone through enough already, and his cancer was gone anyway, so why deal with chemo?  So they stopped chemo, and he's fine.  Without any stomach at all.  We can take him out for indian buffet and he can eat anything. Except for the last time he was there the buffet was a bit iffy so we've settled for a future in Afghan food.  But you get the point. He functions well at lunch functions (Provided that the food is up-to-snuff).

Function (noun): dressing for a function:  I seem to be surviving well with my post-surgical colon prosthetic (Oh! That's not a Colostomy Bag, is it? Hold on, is that a Holister 8180 with lock-and-roll design and the updated skin barrier? Lovely choice!).
Stretchy leggings, stretchy skirt waists, long tops to cover. . .  But not many jackets do well with those, so winter becomes another wardrobe challenge. (You wondered why your cancer friend didn't take you up on your offer for tickets to the semi-formal winter concert? Probably a functional-clothes issue.)  HUGE shawls are lovely. They double-up as blankies-on-the-go (Thanks, Mom!).
Bladder cancer people might need to have urostomy bags--same kind of thing, same kind of wardrobe challenge. (This blog is nothing if not educational!). These bags are flat and discreet until they're. . . not. In an emergency-restroom way. Best invitation for some of us cancer patients is a place with GREAT restrooms, hopefully individual restrooms (where one can access a sink privately, and have somewhere to hang a purse and shawl and maybe a skirt for a minute while they accomplish personal hygiene feats of Olympiad proportions). 


dressing for a non-functional function: As an adult, I had the chest of most 12-year-olds.
The first biopsy left me with "Is it Breast Cancer or Ovarian Cancer?" I knew that if it was breast cancer, and I had to have one removed, nobody would notice.  It sounds a little flippant, but really, it was true. Bras were never needed for me. Breast-cancer women have a whole life and bras and wardrobe that I've never really understood. I DID nurse 3 children, and put in 7 years of breast feeding. That made it a little more difficult to understand the purpose of other women's big squashy boobs besides the fun factor.
Breast cancer would not have changed my wardrobe one bit. Same with lung cancer, or brain cancer, or many others.  Ovarian cancer took away my ability to wear tight-fitting-butt-enhancing-small-sized-long-and-lean GAP jeans. Damn. Not many women could do those well at 50. I could. Aaargh! 

With me, it was often difficult to distinguish my front from my back.

Function (noun): mathematical solving of a function:  My top-notch cancer team is there for me 100%. But recently I came back in contact with one of my life's best friends. Sometimes, with best friends, you drift in and out of contact. But with lifelong best friends it doesn't really matter because you're always still there for each other and when you get back into contact it's as if you never left.
So my friend is a scientist, and, when it comes to math and science entering my world, my eyes kind of cross over and I get a fuzzy feeling and blur and yawn a lot. So little did I know that his Science Research just happened to address my own type of cancer! Yay! In short, we're on it. (and he's a good enough friend to simplify the science to where I don't start napping while he's talking). I couldn't function without him!  
 New clinical trial options await. . .

Profuse acne is a side effect of the MEK trial. I feel 15 again!

And who can resist Dionne Farris' "Hopeless"?
https://www.youtube.com/watch?v=DxDgp1JROs0&list=RDDxDgp1JROs0#t=0