“I’d be afraid of the pain.”

“I’d be afraid of the pain.”

Thats what my friend from support group said, when we talked about getting spiritual guidance. She was worried about the pain.

Surprisingly, I hadn’t even considered the pain that could come from a death by cancer. Especially surprising given that I’ve been dealing with a not insignificant amount of pain the last month. Not enjoying it either.

In general, I feel mostly at peace with the idea of dying. Sometimes I wonder if I am too resigned to the idea. I am kind of a realist, so I feel it is important for me to accept what is happening – I have cancer. It will kill me eventually. But at the same time, I feel positively enough about my life that I’m not rushing to meet death. I want to milk the time I have for all it is worth.

Some days the pain makes that difficult. Tuesday was a bad day. I started taking painkillers soon after waking up, but never quite caught up with the pain. I went to my other support group that day and just felt pitiful and sorry for myself.

The days since have been much better. My inlaws have been visiting and I’ve found their companionship to be both enjoyable and comforting – much more than I ever would have expected.

I haven’t done much creative work this week, visitors and all, but it seems like I’m starting to get out of my emotional funk, and that feels terrific.

After reading a blog post about solo hiking today, I spent a smidgen of time feeling sorry for myself that I won’t be able to hike the PCT, and instead started planning where I’ll take my inlaws tomorrow for a picnic lunch. My body won’t let me do all I want to do, but it can’t stop me from getting out there. Not yet.

I’m still not bothered by the idea of a painful death. Maybe I have faith in the state of palliative care. Maybe I just like to ignore the idea. My main worries about dying lie not in the process I’ll experience, but with those I’ll leave behind. I continue to grieve for my kids and for not being able to be the mom I always thought I’d be – one like my mother, always there to support her kids, no matter how grown up they are.

Maybe I should look into some spiritual guidance in that area after all.

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.