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.

 

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.

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.

Toilet

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?

Opportunity

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

My peaceful, easy feeling

Towards the end of March, I finally made the decision to quit the job that was holding me hostage in a small windowless room.  To celebrate, Reil and I started working on the back yard.  In one weekend day we were able to clear the ivy that had taken over the retaining wall, clean the beds for planting, prune the mandarin orange tree, and take down the ugly wire fencing.  We breathed a sigh of relief and began planning what to do with this clean slate.

The following Wednesday I went to the emergency room at Kaiser, where I’d soon find out I had cancer.  The planning of the garden was put on hold while we reverted to crisis mode and planned for the removal of my left kidney.

Coming home from the hospital after my surgery, I began to seek refuge in the yard.  The beds were almost bare, but the one plant we’d left was heavy with yellow flowers, and small blue forget-me-nots had burst onto the scene in another part of the yard.  The pruned orange tree was thanking us for the care we’d given it with a flurry of white buds all over its branches.  I’d hobble outside, wearing the luxurious robe my friend Elisabeth had sent me from Italy, and I’d soak up the sun for a few minutes or sit for hours in the shade of our tree.

photo 2(1)Because my body couldn’t handle yard work, my daughter’s 4-H gardening group came over and planted herbs, vegetable starts, and flower seeds, giving me small bits of green to enjoy.  A month later, the tomato and tomatillo plants are reaching for the sky; one plant even has fruit on it.  There is a jalapeno pepper plant near by and cilantro that looks like it might take over the whole bed; my salsa garden.  The marigolds and sweet peas are popping up from the ground, and cucumber plants are starting to spread out their vines and leaves.  Other plants are having more difficulties – the beans just don’t seem to be able to get a toe hold, the spinach is burnt, and some varieties of greens are completely gone.

I’m experiencing great joy watching the garden grow, weeding the beds, tending to the plants.  But I also find considerable comfort just being in my yard.  this outdoor “room” has become my favorite of the house.  I come here to write each day.  It is quiet enough to concentrate even when the kids are home.  I meditate here.  I practice guided imagery here, enjoying being at peace in my mind, while feeling the light light breeze tickle my face and the warm sun gently bake my body.

We eat most of our meals here between March and November, but today the table is covered with paints and canvasses from our art projects.  In the gazebo, the hammock and the swinging chair sway with the wind.  The rabbits are in their hutches, but will be let out for a run this afternoon. The cats flank me in the grass, waiting for me to rub their backs and bellies when I finish writing.

Scanxiety

My first post-surgery scan is this week, June 4.  I had thought I could be all sorts of blasé about it, but as we get closer to the date, I’m finding that I’m increasingly uptight and nervous about it.

This scan will give us the first indication of how things are progressing inside my body.  It won’t give a full idea of how the pazopanib is working, since I’ve had a few snafus with that – first the mistake of taking 1 pill instead of 4 each day, and then having to reduce the number I’m taking because it takes a week to get a prescription filled, not 3 days.  If there’s no growth or if there’s a reduction in size of the lesions in my lungs, that can count as a win.

medium_74267002

But I’m worried that the lesions will have grown in size or have multiplied.  Even that won’t mean that the pazopanib isn’t working (because of those snafus), and would still mean another 6 weeks of waiting.  6 more weeks that were expected.  They were always in the plan for evaluating this first drug.

Most of all, the looming scan makes me have to break my state of denial, ignore my feelings of good health, and acknowledge – once again – that I have cancer.  Frankly, the denial is comforting, and at this point it is easy to be there – reasonably good health, few side effects from the medications, an excellent quality of life.  I often ask myself, “Am I really sick?” because it just doesn’t seem possible from the outside.

And that brings us back to what is happening on the inside.  And the fear that the inside won’t match how I’m feeling on the outside.

 

photo credit: Rod Senna via photopin cc