“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.

In the middle of the night with cancer

I’m lying in bed, unable to slow my brain down enough to sleep. Funny, since I’ve spent the day unable to muster the energy to do anything at all, mostly just lying on the sofa or my bed.

I’m scared. That’s what it all comes down to. I feel unsettled and scared, just like I felt after my diagnosis 10 months ago.

I’m not scared of dying, not really. Ultimately it is just a process, and when my body is done and my consciousness fades away, I’ll be alright. Null. It won’t matter to me anymore.

But I am afraid of not living. Of missing out. Mostly on my children’s lives. I had put those fears aside for a while and just focused on living. And did a good job of it.

Pazopanib can work for some people for many years. But not for me. And now the timeline has all moved forward. And I suddenly feel a sense of urgency to get done the oddball things I feel need to be done. All this on a day when the new medication has kicked my ass. Keeping busy is one of the best ways I know of staying in the present, and not dwelling on cancer. And I’m just too exhausted to do anything.

I want to work on my quilts. I want to clean out my closets. I want to frame and hang artwork that’s been sitting on shelves for years. I want to make sure I have a cozy nest of a room so that when days like this hit, I’ll be able to pamper myself a little. I want to plan a trip for the family, but don’t have the brain power to make the decisions necessary.

If you’re local and want to drop by at some point and help me do some of the things I want to get done, I’d love to see you.  I’ll even try to make sure I’ve showered.

 

Update: 2/5/15

I met with my oncologist today for the results of my scan. The news isn’t great – in most areas there was growth. In some cases, it was only a mm or so, but in a few it was upwards of 10mm (basically doubling in size).

So, as of today, I am off the pazopanib and starting a new drug, Inlyta (axitinib). Keep your fingers crossed.

I’m having a hard time processing this. My doctor comforted me with “There are lots of drugs to try.” But in my mind I’m just picturing a bleak and short future. And there’s the problem – I’m picturing the future and it messes with my cool.

So, please, keep me in your thoughts and send lots of get your groove back vibes. And if you can wish away cancer, too, that’d be excellent.

Not yet!

Last night Linda died. I met her in a support group that I attended last summer. Once school started back up, it was difficult to go, but I went when I could. I last saw her at a retreat in November, and was surprised to hear yesterday that she was on hospice.

On my walk today, I found myself crying for her (for me), and chided myself, because obviously there are people who know her better and loved her fully. But she touched my life, too, and helped me get situated on this stupid journey.

She was diagnosed in 2013, about 18 months ago. I keep thinking “Not yet! Not yet!” Am I thinking of her or me? Yes. I guess I am.

I notice that when I’m not posting about quilting, I seem to post about the things that break my cool. Being involved in support groups provides a lot of support, but also ample opportunities for me to lose my cool. On the whole though, I’m glad to not have to take this journey on my own.

Dancing with death

Last night I sat next to Molly, watching my aunt dance with her new husband.  My stepfather walked onto the dance floor and took his sister, the bride, in his arms for their dance.  And, of course, I sat there thinking of how much I’d love to see my son and daughter, currently mortal enemies, dance together at one of their weddings.

It had been a long day, starting with the kids circle support group.  We had a large group this time – about 12 families.  After the kids went their directions, the parents gathered to talk.  One parent noted that we had a high proportion of people with very advanced cancers – metastatic colon, lung, pancreatic, mesothelioma, and kidney (me), among others.  A few of the cancer parents had been given a timeline – a year, two years.  Others of us don’t have a timeline yet.  We aren’t blessed (or cursed) with that clock ticking quite so loudly.

But still, it’s there.  And even if our use-by-date is unsaid, we know that our time is limited.

I know that the likelihood of being able to watch either of my kids get married is slim.  I hope that I’ll be there, as well as for the births of their children and all the other highs and lows of their lives.  I hope to see my children become friends, or at least be able to be friendly with one another.

And that’s where I was, emotionally, as I sat, sobbing quietly, in a bathroom stall, where I’d run to hide my tears.  But spending my time mourning my (possible) losses isn’t living, at least not how I want to live.  I want, need, to be in the moment, enjoying my family, my friends, my life.  When I forget the present, I dive into the bleak possibilities of the future.

With that in mind, I wiped off the tears, splashed water on my face, and went back downstairs for a slice of wedding cake and to dance and laugh right then, in the present, with my family.

A sopping mess

Last week I went to my watercolor class, ready to jump back in after a missed week when the instructor was away.  Half an hour into class, I suddenly had to sit down to rest.  I felt weak and tired, and put my head on my arms on the table, almost like a rainy day “Heads up, Seven up” game from elementary school.  In no time, sweat was dripping down my scalp to my face, nose and onto the table.  My clothes were wet, the table soaked.  I couldn’t get up to clean things up.  People noticed.  Marcia, who is also in my cancer support group, came over to check on me.  Other students asked if I was alright.  I tried to play it off as no big deal because I was uncomfortable with the attention.  Ultimately, the fact that I didn’t know if I could stand on my own, let alone carry my supplies to the car and drive home, forced me to call my husband to pick me up.

I found the whole experience mortifying, scary, and humbling.

I hated being in a setting that is not cancer related, where I’m just Lisa – the fledgling painter, the prospective hiking patrol volunteer, another parent at the school – and suddenly having cancer thrown into the limelight.  It’s not that I want to hide the cancer, but that I don’t want to lead with cancer.  I don’t want it to define me, but in so many ways, it continues to do just that.

Going from feeling good and being excited about class, to a shivering, weak mess in a matter of minutes was frightening.  I was thankful to have Marcia, who knows some of my history, there to support me.  But what if this happened at the grocery store, driving my kids somewhere, on a solo hike?  It took me a few hours of sleep, followed by a good lunch to bring me back to a semi functional state.  I guess a nap in the forest wouldn’t be such a bad thing, but the helplessness would be scary.

The thought of having to adjust my life to fit these changes in ability is difficult to bear.  I love my independence.  I crave time to myself.  Not always, but regularly.  I’m not helpless; I can take care of myself – it’s always been a mantra of sorts.  But maybe not so much any more.  With this shift of mindset comes the multitude of other disappointments.  Ideas that hadn’t quite gelled into goals or plans must be discarded.  It seems quite clear that I won’t have the energy or ability to obtain the knowledge, achieve the fitness, or spend the time needed to reach these possible goals.  I recognize that these may have been pipe dreams in the first place, but I still feel the loss of the hope, the wish, the dream.

For now, I’m trying to make adjustments so that, as much as possible, I can live close to the level I’ve been living, and continue to do the things I’ve been doing.  That might mean more naps and saying no to even more “obligations,” and focusing on the things that I can still accomplish, even if that day the list is

1. Get out of bed
2. Spend time with my family
3. Go back to bed.

I pity the fool

We dropped the kids off at Camp Kesem this morning. Camp Kesem is a network of summer camps that are designed for children with parent(s) who have/had cancer. And it is free. Nice, huh?  At check in, they had a breakfast spread – muffins, bagels, etc., and while the counselors led the kids in songs and activities, the parents got to mill around talking to each other.

We saw a couple of families from our family support group, and started chatting.  At one point, another woman walked over, and our friends introduced her to us.  She asked about my diagnosis, and when I told her “Kidney cancer,” she got a look on her face that confused me at first.  And then I realized what it was – pity.

Why did this surprise me so much?  That she, too, was in the cancer community?  (And, from what it sounds like, lost her husband to cancer.)  It was obvious that she immediately understood exactly what my diagnosis means, which many people both in and out of the cancer community don’t.  So I appreciated not having to explain.  But, pity?

Although I know my lot is not something to be desired, I have a difficult time viewing myself as someone who needs or wants pity from others.  Love, support, back scratches, and hiking buddies?  Yes.  Pity?  No.

I think what I was hoping for, after seeing the initial spark of recognition, was something more like “Yeah, I understand.  I’ve got it.  And you’re going to do just fine, no matter what the outcome.”

Because I think that’s kind of where I am now.

But maybe I’m the fool?

 

Letter to a friend

There is some freedom for me in knowing there isn’t a cure for what ails me. I may not know the way my cancer path will meander. I may not know how long my path my stretch, though I do know it will be shorter than I’d like. I do know where it will end – not with a cure, but with death.

I know that, to some, this may sound fatalistic, or that I’ve given up. But I haven’t. (Though I think I deserve the right to be fatalistic now and then.) I simply want to focus on living and making it the best life I can.

I feel I have a bit of freedom in that I don’t have to waste my time and energy hoping for a cure, for my salvation, as it were. I don’t have to go to battle to try to save my life, trying desperately to change the path I’m on, guessing which treatment might keep me from dying.

Instead, I get to make choices about how to live my days. I get to think about the things that are truly important to me. I have the chance to examine my life. I have the chance to examine my death. I have the chance to come to terms with a shortened life span, with death that will be sooner, rather than later.

I want to share all of this with you. I want you to be with me on my journey through cancer, as you’ve been with me through other journeys – painful, happy, joyful, scary.  I want you to understand my journey, so listen.  I want to understand your journey, so don’t be afraid to talk.

Please don’t be upset if I choose to find ways to accept my path rather than fight against it.  I want it to be as joyful as possible, and that requires, at least for me, a certain sense of peace.  I haven’t attained that peace yet, but that is my goal.

That,  and sharing good times and laughter and tears with you.

But first we’ll live

Reil and I have been “binge” watching Game of Thrones, and we just finished season 3.  Though everyone talks about the Red Wedding, what struck me most about the season was a line in the episode “The Bear and the Maiden Fair.”

“If we die, we’ll die.  But first we’ll live.”

But first we’ll live.

Ygritte tells this to Jon Snow, as they’re trying to come to terms with being loyal to one another and to differing factions.  She recognizes that theirs is a life that might be short.  They’ll die sooner or later, but first, together, they’ll live.

Lately I haven’t been focusing so much on living.  I’ve been trying to work through my feelings on death, dying, loss. My life expectancy has been cut drastically, and processing that takes a great amount of energy.  The issues of grief and grieving keep coming up in relation to different parts of my life – my family, my marriage, my children, my career, my hobbies and interests.

How do I reconcile what I thought I’d have with what I’m going to have?  Where are my priorities now?  Those things, whether they be goals, expectations, etc., that I’ve pushed off for later have to be addressed.

But first we’ll live.

Although I want to start focusing on just living again, I know it might not be my primary focus for a while.  I have to honor the feelings I have now.  I have to work through them.  But I yearn for the time when I can just live again.  When I can have the emotional and mental energy to be participate in conversations that aren’t about cancer.  When I can plan things and follow through.  When I can look ahead to living, not dying (even though I know that’s in the forecast, too).  When I can just relax.  When I’m not focused on grief.

But first I’ll grieve.