How do you measure your life?

On Friday, I had a phone call with my oncologist.  We discussed the ins and outs of re-starting the Inlyta.  (I’ll take my first (second first?) dose in a few minutes, after I cut the pills in half.)  He hooked me up with the palliative care team at Kaiser; I’ll meet with them on Tuesday, and hope to get help with a number of things including pain relief and  fatigue relief, as well as (I hope) exploring how to make as much of the rest of my life as possible.

The other thing we talked about was my prognosis.  In my email to him, I’d asked to discuss this with him on the phone, and he was willing to do that.  He approached everything as statistical, which was slightly frustrating because I want to know what’s going to happen with me.  Of course, he can’t give me that information.  I know that he has to deal in statistics, not crystal balls.

So here’s the low down.

Statistically, if I were to go untreated, they’d expect me to live about a year.

Statistically, people who take Inlyta averaged about 2 years after starting Inlyta.

He was quick to point out that the latter statistic includes people who make it a month, but also people who keep on going on for years.  (And for those who haven’t read it, I highly recommend Stephen Jay Gould’s essay, The Median Isn’t the Message. )

On one hand, I’d been preparing myself for the first number to be 6 months.  On the other, I was hoping to hear a statistic of a few more years than that, so a little bit of relief and a bit more disappointment.  But on the whole, I feel more grounded with this news.  Once I’d heard that the pazopanib wasn’t working any more, I felt very adrift, unsure of what to expect.  Being given some numbers to work with helps me to put everything into perspective, whether it’s dealing with side effects, planning vacations, spending time with family and friends, figuring out what needs to be done before I die.  I’m alternately crying in the shower and happily making plans for what I want from my life.  (Christmas in Hawaii?  CHECK!)  Mostly, I’m attempting to get fully back into the positive state of mind that I’ve had.

Oliver Sacks just wrote an essay in the New York Times on learning he has terminal cancer.  Much of what he wrote resonated with me, particularly this excerpt:

I feel intensely alive, and I want and hope in the time that remains to deepen my friendships, to say farewell to those I love, to write more, to travel if I have the strength, to achieve new levels of understanding and insight.

He writes, also, of gratitude and feelings of privilege, and I recognize those feelings in myself.

I often hear people talk of a journey with cancer as a battle – obituaries that state “She lost her 5 year battle with cancer”.  Since my diagnosis, I’ve not been able to apply that framework to myself.  First of all, there’s that saying, “Don’t pick a fight you can’t win.”  I know I’ll lose this one eventually.  But, more to the point, if I spend my time battling cancer, then that takes time and energy away from what I want to do – live.

I want to live long and large and loud.  I want to live with my family, on trails in the forests, sitting on the beach, reading a book, watching a movie, cuddling with my cat.  I want to laugh with my friends, see places I haven’t seen before, make art and crafts that please me and others, make art and crafts that everyone hates.  I want to leave a wealth of memories for the people I’ll leave behind.

And I want to thank you all for staying on this journey with me.  It’s not a journey that any of us expected, and I recognize that I am the only one who has to stay on it.  So I thank you for your company and support.  It means so much to me.

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Some of these might be possible

Antelope Canyon, AZ

Bourbon Street, New Orleans

Camino de Santiago, Spain

Forum, Rome

Gorges of Australia

Great Blue Hole

Iceland

Jordan, Petra

Marketplaces of Marrakesh/Morocco

Ngorogoro Crater

Olympic National Park

Pacific Crest Trail

Rapa Nui

Scottish Highlands

Yucatan Peninsula

Zion National Park

Bucket List #34 – Start something

Is it just that I want to leave a legacy or do I want to make connections or do I just want to have fun?  Probably all of the above, but another item that I’m adding to my bucket list is to start something that allows me to give back a little.

Start what?

What is calling to me today is to start a local hiking group for cancer survivors and caregivers.  Seems sort of like a no-brainer, right?  And it serves me – by giving me hiking companions and connecting me with other cancer folk, while also serving the community.  But really, I think I’d get more from it, just in case anyone were to think I was becoming all civic minded and such.

I’m thinking that I could start off with weekly or monthly hikes around the SF Bay Area, with varying difficulties, based on the abilities of those involved.  If it actually took off, maybe I could follow in the footsteps of Live by Living, the awesome group that runs the hiking retreat I’ll be going to in September, and start up some retreats, as well.

What do you think?

Bucket List Item #72 – Wear a bikini in public

I haven’t worn a two piece bathing suit since I was 2 or 3 years old, way back in the 70’s.  I was a skinny little thing back then, kind of cute, too.  My sister and I were like fish.  If there was a body of water around, we were in it.

70's

I’d like to wear a two pieced bathing suit again, but some serious changes would have to take place for that to happen.

You see, I’m overweight, and have been since I was in college.  And we all know how fat women look in bikinis.  Now I’ve also got this large red gash across my torso, remnants from my nephrectomy last April.  That’d be front and center if I wore a two pieced bathing suit.

So changes must be made.

Not to my body, mind you.  I love my body, even though it’s not totally cooperating with me these days.  (Yes, cancer, I’m talking to you.)  My body gets me here, it gets me there, it gets me everywhere.  It allows me to reach the high shelves.  It allows me to reach the tops of high hills (sometimes even high mountains.)  I’m sturdy.  I’m not frail.  Hiking up hills, I might have to pant more than I used to since the cancer is in my lungs, but I get there.

The scar across my left side is a scar I wish I didn’t have to have, but I’m thankful I do.  It’s just a part of who I am now, like the scar on my finger where one of our guinea pigs bit me when I was in elementary school.  Like the tattoos on my ankle and my wrist.  Like the white hair that has, in a matter of just a few months, taken the place of my natural brown.

So, no, the changes don’t have to be made to my body.  They need to be made inside my brain.  I need to be rewired against these stupid societal rules that only skinny minis with “perfect” bodies can show themselves in public in a bikini.

At the springs in New Mexico, I saw quite a number of not young, not skinny, women in two piece bathing suits.  The only thing they had that I didn’t was a bit of bravery.  Yet, here I am, bravely dealing with this stupid cancer – probably the scariest thing anyone will ever face.    And still, a little piece of fabric scares me more.

We’re going to Mexico in November, right around the time of my birthday.  Maybe a trip to the pool or the beach, dressed in a two piece,  will be my birthday present to myself.

I mean, if it isn’t too cold.