What I’ve found

I really do like my life, even with this stupid cancer hanging over my head.  I am doing things I really enjoy – hiking, time with friends and family, art.  Even when I’m dealing with sadness, I am still very happy with life.

There is so much to be grateful for.  My health is good, all chronic conditions aside.  I can be active.  I feel good.  I look healthy.  I am pain free.

I have so much love in my life.  My husband, Reil, is supportive.  He is my rock, in a quiet, supportive way.  When the kids are in bed, we watch tv, and he holds my hand.  He gives me comfort and sends me strength.  And I don’t even know if he realizes it.

I have two wonderful kids who motivate me to keep healthy, even when, or perhaps particularly when, they fight or annoy one another.  I plan to be here when the eye-rolling and under the breath mumbling stops.  When they reach the age where they realize that moms really do know something after all.  (That day will come, won’t it?)

I have friends who make me laugh, give me support, challenge me, give me cocktails, give me hugs.  They’ll let me talk about life with cancer – the pain, the blessings, the annoyances – but won’t ever let me define myself by the cancer inside me.  They keep me involved and connected.

I have strong support systems, and am building more through different cancer groups in the area.  Whether it is the family group, where all four of us find support and camaraderie; cooking or art classes that allow me to meet and create with other women; my weekly cancer support group; or my blogging community (hello!), I am building relationships with others on this path.

I have outlets that can help me cope.  I hike and walk for the therapeutic benefits, both physical and emotional.  I make crafts and do art.  I play games.  I read, more slowly than I used to, but I read.  There are lots of things I want to do, to accomplish in whatever time I have left.  It’s just more concentrated than it used to be.

 

Quelling the maelstrom

My first counseling session.  I drove up to the Cancer Support Community with other plans on my mind.  Plans about what to do with the rest of my life.  Then, sitting in reception, waiting for my counselor, Liz, I wondered what I was going to talk about.  All of the other therapy I’ve done has focused around depression and how to cope and get better.  What I’m dealing with now isn’t depression, and the feelings I’m dealing with aren’t likely to go away with medication or even therapy. 

Liz made a ramp with her arm.  “In depression, you’re headed on a straight path toward a specific goal.” 

She spiraled her hand around.  “In grief, you’re going to be touching on certain aspects over and over at different times.”

Grief.  I knew this was grief, but it feels so weird to be grieving for myself, not someone else.  I still don’t know how to do it right.  Right?  Right for me, I suppose.  I don’t reckon there’s only one right way to grieve.  I think of my nana, who I’ve missed more acutely in recent months.  I think of Louis and Doug and Stefan, my contemporaries who were all taken away from me.  I think of my children and what I won’t be able to share with them.  And I grieve.  I grieve for the mom I won’t be, the wife, I won’t be, the personal connections I can’t complete as I once thought I would.

These are feelings I didn’t think I’d have to deal with for another few decades.  But here I am, looking at the rest of my life.  I might have less time than my mother.  I certainly have less time than I thought I’d have a few months ago.  Suddenly I’m like an old woman, looking at the last few years of my life, trying to get it right.

I write to help process everything that is going on.  There are so many thoughts and feelings whirling around in my head, and writing allows me to grab hold of one or two and tether them down, to slightly calm the maelstrom that is my mind.  Liz says that processing more of the grief, more of the thoughts and emotions, will eventually help me to have more room to deal with things that aren’t a crisis.  But for now I’m probably going to remain scatterbrained, disorganized, a little crazy (my words, not hers.)  I realize that I also write my blog as a way to share some of these feelings while not having to do it face to face with people.  How can I deal with other people’s grief when I can’t deal with my own?

For now, I am relieved to have a safe space to process all that’s going on within me.

A day on the Pacific Crest Trail

Over the weekend I was able to take a short hike on the Pacific Crest Trail.  The trail that I (and countless others) read about in Cheryl Strayed’s book, “Wild,” has spurred many to follow in her footsteps – though perhaps without the heroin use.  I’ve often thought that I would love to try to thru-hike the whole trail from Mexico to Canada, all 2600 miles of it.  And then I wake up and realize that though the will might be there, and the physical ability might be found or developed, I don’t know that I could swing the logistics of walking for many months, probably on my own.

But perhaps it would be possible to plan many shorter trips to see various parts of the trail, north and south.  As I told my brother-in-law this weekend, “Fuck it.  I have cancer.  I’m going to hike.”

Trail head marker

My sister, her husband, their son, and I got on the trail where it crosses Donner Pass Road, and headed north.  My brother-in-law went on ahead at a run, leaving the three of us to savor the surroundings as we walked at a more leisurely pace, one that was set by my three year old nephew.  “I want to lead,” he said.  And, since his legs are shorter than mine, and since I’m still working on getting back into shape after having my kidney removed, and since, really, I didn’t want to hurry up that hill, I let him lead on.

Following the leader

It was great to get in some practice hiking at elevation (around 7000-7200 feet).  My trip in Colorado will start off at 10000 feet, with an elevation gain of about 1300 feet over 4 miles.  The distance doesn’t phase me, but the elevation makes me nervous.  Showing myself that I can make it up a big, steep hill (which we encountered on the PCT) was enough to ease some of my fears about the September trip.  Even if I had to go slowly.  Even if I had to stop every three minutes, I still made it to the top.  Yay me!

A flat spot

The trail varied in quality.  At times we were scrambling over granite slabs, watching climbers above or below us.  Other times we walked through stands of pine trees, with ponds nearby or ferns at our feet.  And then there was the hill with shrubs along each side, guiding us up the switchbacks.  There were lots of rocks – many more than I tend to encounter hiking around the bay area, and that eased other fears.  My trail runners (Brooks Cascadia) held up just fine with the rocks, big and small.  I don’t think I’ll need to purchase “hiking” boots for my trip.

Wild Flowers

I was amazed by how many wildflowers there were on the trail – white, pink, purple, yellow, orange.  The variety astounded me, especially since I’m not used to seeing many around home after May.

We had to turn around entirely too soon; such is life with a toddler.  My sister and I have begun to discuss taking a short backpacking trip later this year, and I intend to drive back up to the Sierras while my kids are in one or another of their sleep away camps, just to get in some more high elevation hikes.  And to hopefully see more of the Pacific Crest Trail, which continues to tempt me with her siren song.

 

 

Donner Lake

I haven’t had enough sleep. I spent many hours battling traffic after leaving hours later than I wanted to leave. My family was grumpy for most of the drive.

But here we are. I’m sitting on the cabin porch, under pine trees, listening to the birds (jays? Not sure, I can’t see them) go wild.

It wasn’t a day of sadness, but maybe because I was too focused on driving and the slow cars in front of me to think about anything else. I’ve often been accused of living too much inside my head. That’s probably true, and probably not a trait that will help me much from here on out.

At least this long weekend won’t give me much of a chance for that. We’ve got a lake to play in, paddle boards to paddle, boats to rent. And dad, sisters, cousins to hang with. I think there might even be some trails to hike.

Scratch that. There are DEFINITELY trails to hike. I saw signs for a Pacific Crest Trailhead not far from here. I might have to get all Cheryl Strayed on my family, even if it’s just a quick half mile up and back. Good thing I brought my hiking shoes.

It’s also nice to go on vacation knowing I have a counseling session set up for when I get back. I have to give huge props to the Cancer Support Community and their quick turn around on my request. I hope that having a session all to myself will result in a little clarity and a few more tools for dealing with all that’s going through my head.

But first, some breathing. And then some dinner.

An overwhelming sense

When I was younger and dealing with depression, I would feel so overwhelmed that I wanted to drive off the side of the road.  Not to kill myself, but to make everything stop for a bit, to give myself a break to figure out how to deal with everything.

Now I feel overwhelmed again.  I’m overwhelmed by the rules of what I “need” to do – what to eat, what to think, what to do.  I’m overwhelmed by the need to eat healthy and well, when I cannot wrap my mind around putting together a menu, a shopping list, ingredients.  I’m overwhelmed by trying to stay positive and think happy thoughts, when the energy required to do either is more than I can muster up.

I’m overwhelmed by the solitude, even though there are loving people all around me.

I’m overwhelmed by the needs of my family.  How can I be there for them when I don’t have the capacity to take care of myself?

I’m overwhelmed by the realization that “Fuck, this is going to kill me.”  I’m overwhelmed by the sadness.  I don’t want this cancer.  I don’t want to be sick.  I don’t want to die.  I fucking want to LIVE.  I want my brain to function normally.  I want to be able to cope.  I want to live with a carefree spirit.

Somehow I have to figure out how to deal with this overwhelming sadness.  How to move through it and not be crippled by it.

I’m just not sure how.

A taste of home

I was raised among the redwoods in the far north of California.  We lived in a standard tract home from the 50s/60s, but looking out my bedroom window, my view was of the trunks and branches of redwood trees.  My sister and I created playhouses in the stumps below our home.  We grew up knowing the soft but rough bark of the trees, and the freedom of running through the forest.

And then we grew up and moved away.

Yesterday I was still far from home, but ensconced beneath another grove of redwoods on the San Mateo coast.  The breakfast fire burned down to embers; Reil did the dishes.  We took a walk down the road and up a trail to find a geocache – a wonderful, fun cache that was suspended from a tree.  Jill and I hiked up and around the hills, through redwood forest, noting the changes in the ecosystems as we passed through.

It was good to be on the trail.  I need the prep for going up hills – September’s climb into the Rockies will be here very soon.

And before dinner, I took a quick drive down to the ocean.  To watch and hear the waves crash on the rocks, feel the setting sun and the cool breeze on my face.  To marvel at the legion of wild flowers along the highway – all yellow and orange this week.  Lupine, poppies, other blooms whose names I’ve either forgotten or never knew.

This wasn’t quite home, but it felt like it.  And all of the stimuli for my senses – the shady groves, steep hills, pounding surf – served to drive away some of the melancholy I’ve been experiencing.  The sadness still remains, but for a short period it had to take a back seat to a little bit of joy.

Warning. There may be some whining.

It’s been a tough couple of weeks.  We’ve had celebrations – my terrific scan results, the end of the school year and Jacob’s 8th grade graduation. Along with that there was a flurry of activity.  It feels like I’ve been going non-stop since last Wednesday, when I had my scan.  Driving kids here and there, dropping stuff off at the fair, driving into the foothills to learn to shoot a gun (thanks, Matt!), appointments, birthday parties. But, UGH!  I’m exhausted.

I haven’t had time to take care of myself.  The best I’ve been able to do is to get to the gym for a little bit most days.  I haven’t had enough sleep.  I haven’t practiced meditation or listened to any of my guided imagery. I haven’t been eating my fruits and vegetables; the smoothies don’t taste right when I make them (even if I cut way back on the greens), and eating salads and raw vegetables hurts because I have sores in my mouth.  I’ve been eating a lot of cheese, because it is delicious and soft, with no pointy parts.

The result of this is that my level of cope is really, really low.  I’ve been wanting to cry most days this week.  And most of all I don’t want to have to hide it.  I don’t want to keep it all together for everyone.  I don’t want to “be strong.”  I don’t feel strong.

I want to wear baggy sweat pants and ice cream stained t-shirts.  I want to hole up in my room or in the zero gravity in the back yard.  I want to tell everyone to take a hike.  I don’t want to hike.  I want to curl up in a corner, whimpering, “But I have cancer.”

I know that there is absolutely no one in my life who expects me to remain strong all the time.  I know there are lots of people rooting for me and giving me support in so many different ways.  I know that the push to keep up a good front is coming only from me.  And yet I don’t know how to allow myself to let it go, how to just let it all out.

Maybe I need to go see “The Fault in Our Stars,” or some other weepy movie, so that I can let the emotions of the movie flood over me and clear out the sadness about my own life at the same time.

 

photo credit: Chiot’s Run via photopin cc

Why I shouldn’t make big decisions while on cancer

This could be one of those celebrity mug shots if a) I were a celebrity, b) this were shot in a police station instead of my bathroom, and c) someone had arrested me for something besides crimes against my hair color.

I really shouldn’t be allowed to make choices like this while I’m dealing with cancer.  Maybe there’s a blonde that would go well on me.  Maybe there’s a colorist who could do better highlights than these.  I don’t know.  (But the green is all on me – that was my post diagnosis celebration.)

All I can say is that my friend and ex-hairdresser, Andrea, talked me down from the edge and into a drug store for a quick fix with a semi permanent hair color.  I even got a few compliments today.

You can all stop laughing now.  REALLY!

 

What cancer took away

1.  My sense of taste.  Things that used to be sweet now often taste bitter or metallic or just plain gross.  Salty foods can taste bland.  I hope this side effect will go away in time.  My figure will attest to my love of food, and while I’d like to become more svelte, I’d rather not do so while hating the taste of everything I eat.

 

2.  The color of my hair.  Another side effect of pazopanib, I can probably live with this.  Who doesn’t want to be blonde?  I am hesitant to deal with the fading green dye job on my head because I want to see the blonde roots grow out.  Meanwhile, I can spend ages marveling at how hairless my legs, arms, and upper lips look, even when they are covered with hair.  I may never have to shave or wax again.

3.  My continence.  No!  Don’t fear!  It isn’t always that bad, but I can’t ever be certain whether my stomach and my bowels will be kind to me on any given day.  I tend to try to remain close to toilets when possible.  (Yes, that upcoming camping trip is making me nervous.)

 

4.  My inhibitions.  I’m so much more willing to let people in and to let them let me in.  I can take people as they are and value them as is.  And let them do the same for me.  What’s the worst that can happen?  I’m already dealing with that which will kill me, so the worst would be that I grow stronger.

 

5.  A reliable brain.  If it isn’t in front of me or if I don’t do it immediately when I think of it, it probably won’t get done.  Sometimes it won’t get done if it is right in front of me.  In my previous life, I’ve been a fairly organized person, even doing work as a professional organizer.  Now I can better understand the people I’ve worked with.  I look at the clutter on my dining table, and I just can’t make the decisions about how to deal with each piece.  Decisions that used to be easy are so difficult or energy draining now.

 

6.  My future.  What I thought my life would be has been taken away.  I always hoped to be a grandma; I looked forward to when my children would grow up, leave the house and become adults, giving me time alone with my husband;  I wanted to grow old with him.  Will I get any of these experiences?

I no longer have a prescribed path to follow.  My old future is gone, but a new future has opened up.  One that is different and unexpected, but also one where I feel I have more power to make the time I have be what I really want.  More chances and risks to take, more experiences to try, more ways to push myself, more ways to live while I can.

photo credit: arnoKath via photopin cc
photo credit: {Guerrilla Futures | Jason Tester} via photopin cc

Don’t give a …

I didn’t want to go, but Reil dragged me to the polling place on Tuesday and I dutifully filled in the arrows on my ballot, signed the provisional ballot form (since I didn’t know – or care – what happened to my original mail in ballot), and turned it all in to the workers.  Honestly, though, if Reil hadn’t been going and if going along didn’t seem like the path of least resistance, I wouldn’t have bothered.  But we vote.  That’s what our family does, and Reil would have given me a hard time if I didn’t.  So I voted.

I could not care less about the results.  I used to enjoy talking politics.  I loved watching shows like Real Time and the Daily Show, and reading political blogs or getting into discussions (arguments) about politics both online and off.  Now I just don’t care.  I might watch Jon Stewart or John Oliver, and feel somewhat amused by the jokes, but I don’t feel the passion or the rage I used to feel.

That same morning, I had breakfast with Jule.  We chatted about a lot of different things, including, of course, stupid cancer.  She complained about some aspects of her work, we made plans for the weekend, and later she asked me, “How do you do it?”

“Do what?” I asked

“Give a damn about any of my problems.  Don’t they just seem annoying to you?  You’ve got a bigger problem.”

I’m sure it doesn’t hurt that when I listen to my friends talk about their problems or hear their mundane tales of life, I am transported to a world where these are the big issues, the only issues, to a world I used to live in, but now can only glimpse from the outside.

But I do care about them, probably even more than before cancer found me.  I’ve gotten better at listening; though I’ll never be Barbara Walters, I’m better at asking questions of others and drawing out more information about them.  I feel more engaged with the people around me.  I crave the deeper connections that may have once left me feeling scared or on shaky ground, emotionally.

The world that I care about seems to have become a much smaller place, and yet it is also a much richer, deeper world.

photo credit: secretlondon123 via photopin   cc