Another Good Day

I have a tendency to overcommit myself.  I do best when I have three things or less to do a day.  I know, sounds very under-commiting, but it is perfect for me, right now.

yammersI no longer do well with a long list of things to accomplish. I get stressed out. I start forgetting things.  I over caffeinate. I get hungry and spacey. I can’t relax enough to nap.  I binge watch Netflix. I criticize myself for not exercising. It makes for a pretty sad day.

I prefer days like yesterday. Lounge around drinking coffee and reading until my lunch date. Lunch out on a warm covered patio. Swing by the market for groceries. An afternoon bike ride.  Pet Yam (meow).  Some gardening in the shade before dinner. An after dinner stroll with my husband. I’ll take this any day of the week. I need things simple and I like them simple.

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Loose the Stigma, Man…

Back from vacation and catching up on some great lung cancer related articles

Journalist and cancer survivor Diane Mapes writes for Fred Hutchinson on the lung cancer stigma here… Lung Cancer Blame Game

Be sure to click on the image of the girl with her arms spread wide – you’ll see some familure faces in the slideshow.

Another great read is an article by Cheryl Strayed (author of Wild)…  The Painful Personal Toll Lung Cancer has Taken on My Life

Enjoy!

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Holy schamoly!

hope'n it upThe number of survivors at LUNGevity Hope Summit 2015 was 150. How about that?! How did it happen? Are more patients feeling better due to recent rapid advances in treatment options for lung cancer? Could they be feeling less scared to identify themselves as having lung cancer?Or is the lung cancer population finally forming a large uniformed force like the ladies in pink? Regardless, it was pretty awesome to see and be apart of.

My special moments:

1.Hearing Nancy Brinker state that sometimes you need to be a little irritating to get people to listen.

2. Closing down the hotel bar with Kim, Davin, Kimberly, Jessica, Anne and Dusty. Life is so much better with friends you can share the good, bad and ugly with.

3. Having to convince Dr Raja Flores that I did not have my early stage lung cancer surgically removed. …blush…giggle, giggle… I’m advanced, I’ve had it all but surgery…

4. Watching Chris Draft perform – I mean speak – on the topic of awareness and advocacy. I’m pretty certain that man could sell a fireplace to the devil. Best in Show goes to Chris.

5. Alaska Airlines’ lost and found system. I left my prescription eye glasses on the PDX-DCA flight. Two days later, they were retrieved and delivered to me at the gate of my DCA-PDX flight. Impressive!

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Packing For….What feels like Mars

Solid 4.  That is how I rate the last few weeks.  Slightly less than a solid okay.  It felt like each time I took a turn, my road was blocked by some kind of barrier.  After the 6th or 7th consecutive time I lost it.  Tears…inability to make decisions…chills…  Plainly put – I was done.

I’m still teetering the line between breakdown and breakthrough.

I want to scream, “Don’t you know I’m done?! I’m full. I’ve learned enough for now. Leave me alone!” From past experience, I know it would do no good.

The next best thing is a vacation.  Thankfully I had one booked.  Soon I’ll be surrounded by 100+ lung cancer survivors at LUNGevity’s HOPE Summit.  Wow.  The timing could not be better.  From there, I’m off to Palm Springs after a quick 48-hour stop at home for scans and an oncologist appointment.

FullSizeRender-10I’m looking forward to the travels and the new perspective that comes with it.

I dug my climbing shoes out of the closet…it might be time for them to see some action at Joshua Tree National Park.  It has been years, do you think they can remember what to do?

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National Poetry Month

Ready for intense?  This poem was brought to my attention by the facilitator of my writing circle.  Thank you Dawn for sharing with the group.  Please be warned that this poem has some swearing.  Did I mention it is also intense?

Press play to hear cancer survivor Tara Hardy share her poem Bone Marrow.

After viewing you may want to read the text.

Bone Marrow – Tara Hardy

You will be standing in the market, sorting through avocados when the band Kansas “Dust in the Wind” will come pumping through the ceiling, and you’ll think “Jesus…this song is gonna out live me”.

There are few things that getting really sick illuminates:

One. Dieting? Is ridiculous. The way you look is beside the point, the biggest you bring to any room is your heart. 

Two. You will ask anyone for money. Will get on your knees to beg your enemy for help and because you know that, way down under all that animosity, is a deep and abiding love, for why else would she hate you with such loyalty

Three. Things that used to taste bitter suddenly turn to maple sugar in your mouth; what you wouldn’t give for another year to grieve that man you thought you loved more than your own bone marrow.

Four. Suddenly, everything will be so beautiful. The halfhearted sunset, the rotting leaves, the way a rind hugs a lime, your own age spots—what you wouldn’t do to earn more of them. 

Five. Yes, you will drink liquid seaweed. You’d stand on your head in a mini-skirt wearing no underpants in front of your ex’s new girlfriend if you thought it would make a difference but you won’t—not ever—be the same again. This is neither good nor bad, it just is, and, anyway, too much suffering is caused by trying to hold onto things. There goes your youth, there goes your lover, there goes your health, your wealth, your beauty, all of them useful when they were around but there are other tools with which to cherish yourself now

Six. The first thing you give up is the means of comforting yourself with thoughts of suicide.

Seven. The second thing you give up is pride. And as you do, the world will come rushing forward. It is fucking hard to ask for help, but if you don’t, you will never know how much you matter, or the fact that the only person who didn’t love you enough is huddled inside your skin.

Eight. Your skin – Your skin is the biggest gift you were ever given. When the doctors first said I might die—soon—what surprised me is that I didn’t wish I had written more poems, or even told people I loved them, because if I love you, you know! What I wished is that I’d seen more of the world. Let it’s salt stick to me. I’ve spent so much time in my head and  in my heart that I forgot to live in my body! Maybe that’s why she’s in trouble now. I have been obsessed with achieving immortality through poetry. But when I was told in no uncertain terms that this rickety container has an actual expiration date, I knew that immortality is bullshit! So I left that hospital with a horse’s dose of right fucking now. We don’t get to take anything with us! And anything we leave behind is not one foot still in life because once we are dust we are literally for the wind. So on my agenda, for whatever time I have left, is joy.

Because number nine. Anticipatory grief is absurd. When I’m dead, I won’t be here to miss anything, and engaging in pre-missing seems like an indulgence. It’s not that there isn’t pleasure in weeping—why else would we do it so much?!—but I’ve got oceans to float, I’ve got lava to peep, I’ve got a balcony in the south of France upon which to slow dance with a lover who I love down to the spaces between their eye-lashes! Poems will happen because that is how I process life, but I will no longer mistake them for living! If there is any advice I would have to give to my formerly non-sick self, or maybe you, would be this:

Eat the avocados. Love yourself down to the marrow and out past the rind. Make stalwart enemies out of good people who will hate you with their whole hearts, make it mutual and unconditional and this way you will never be alone with love. I don’t want to finite, but the fact that we are is what makes even the terror exquisite! So step out from behind your walls, let the world rush forward—rise to meet it! Turn your precious attention towards God’s most tangible gift, this physical world and while you’ve still got the chance let your beloved skin salt in the wind.

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Hair, or Lack Thereof

For a good portion of my life my hair spent it’s time pulled back into a ponytail.  Every now-and-then I’d get a great cute shortish cut. Eventually due to lack of caring it would grow long enough to be pulled back into an up-do.

As a young girl the color was blond. By middle school the color had darkened slightly, which could have been the oil caused by puberty. In high school and early college years I fell victim to the home hair coloring products. Upon college graduation my hair was universally a nice fine straight light brown. It stayed that way until mid-way through my first line of cancer treatment.

Cisplatin robbed me of my hair, among other things. Whole brain radiation caused all sorts of havoc on/in my head. From this point on what grows out of my scalp is a crapshoot.  Fine to course; white to dark brown; straight to curls – you name it, I’ve likely had it with the exception of long hair.

It’s about time that I get my hair cut again. The poof has gotten pooffier. I’m considering to let it grow out a little.  What will it look like? Will it be easier to cover the thinning patches if it grows longer? Will I ever sport the pulled back pony again?

I feel like a walking, talking, mostly hair growing science experiment.

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Disappointment was no Disappointment

A few days away was exactly what I wanted. The where was not so important. It had to be cheap, approximately 3-hours or less from home, and have a mostly dry 7-day forecast.

The day after my regular oncologist appointment I loaded up the truck with all my camping necessities. Backing the truck out of the driveway, feeling slightly terrified, I set a course for Cape Disappointment. This Washington State campground is settled at the far SW part of the state, where the Columbia River meets the Pacific Ocean.

Cape Disappointment was no letdown. I lucked into a handful of days with great weather. Steps from my campsite I could watch the fierce waves roll in. I felt tough being here on my first solo camping adventure. I did take SW up on the offer to use his truck so I could sleep in the covered bed instead of a tent on the ground. I guess you could say I felt mostly tough.

I did all the hikes the campground had to offer. I now know who they rate “hiking difficulty” for – it’s for me and people like me.  I used to waltz up difficult trails in my flip-flops , gabbing the entire time. Not now. I struggle. I creep along. I get passed by most everyone. Stubbornness and determination keeps my motor running.

When the weather turned to wet and grey I decided to come home. My mission was accomplished. I proved to myself that I can take care of me. Unexpectedly, I also learned that I am a social being. I can be on my own but I really prefer to share my experiences.

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Splish Splash

nightstandFor what feels like an excessive amount of time I’ve been feeling under-the-weather.

Rather than hitting the gym for treadmill walking, I took a friends suggestion to take a bath.  A hot water soak….precisely what I need.  I am a big, perhaps huge fan of most things LUSH.  Especially fond of bath bombs and bubble bars.  I can say with much certainty after today that buying products that turn your bath water yellow are a bad idea.

Looking at nearly everything in my bathroom, to avoid the yellow water, I noticed the walls.  I examined them. They were flat. Very flat, no texture what-so-ever.  The ceiling too.  In an instant I was transported to my childhood bed staring up at the ceiling.  Heavy texture made it easy to imagine exotic creatures and unique beings.  If I were to go back in that room what would I see?

I fear that I would not see much.  I am drained.

Knowing when we need to hit the reset button is important.  The bummer is we usually notice when it is a few weeks overdue – once the reserves are tapped.  Over the next few weeks I am determined to restore and rebuild.  I can hardly wait to see what appears out of nothing.

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Happy Birthday Hijack!

Howdy folks. Spencer here (usually referred to as SW). I’ve taken over Kim’s blog without her consent for an important announcement … today is her BIRTHDAY!!

2011_kw_cc

This is from 2011 since it is also #throwbackthursday today

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Hell Yes, I’m a Movie Star!

IMG_0993I am amazing, damn amazing! I had faith that eventually someone would recognize my greatness!  (giggle, giggle)  Who-da-thunk it would be Genentech’s lung cancer group?  They were the reason SW and I were off to Las Vegas.  I would participate in a brief question and answer on the topic of Alectinib at Genetech’s National Sales Meeting.

In all honesty I get a chuckle at the way I was treated in Las Vegas. The plane landed in the neon desert and I powered up my phone.  Unexpectedly it began buzzing. A hesitant hello came out. “Hello Kim, This is Craig. It looks like you have just landed. A driver is waiting for you near carousel 20. See you soon.” I managed to squeak out an OK while wearing one of the world’s largest smiles. I turn towards SW, the smirk on his face confirms he too thinks I’m getting spoiled.

IMG_0872Before long we pull up to the extravagant Venetian, our residence for 4 days. With much effort, we found the elevator that delivered us to our roomy suite. We filled the next 60 or so hours with eating, drinking, mega loads of walking, some sleeping, and a tiny bit of gambling.

Our casual vacation turned to advocacy work at the tail end. We had dinner with a small group of delightful Genentech employees. The company was as top notch as the restaurant, Bouchon.

 

IMG_0911I observed caring, passionate, polite, and proud pharmaceutical employees. I felt honored that SW and I were sharing a meal with this group. Here I was, along with my primary caretaker/husband, changing the image of lung cancer. Here they were, changing the image of big pharma. Simply lovely.

IMG_0981The next day was Showtime! Waiting for The Admirable Jill to wave me on, I waited in an over-sized foyer. A little nervous. A lot excited. Not only would this be the largest audience, it was the first time SW would hear me mic’d up. My short question and answer session to around 350 Genentech sales reps was executed in typical Kim-Style. Completely honest. Enthusiastic. Mildly rambly. A few 4-letter words. And naturally sad.

Make them laugh. Make them cry. Mission Accomplished!

Arriving in Portland, I got no phone call upon landing. The beautiful bouquet I carried was a reminder of my stardom. I am home. Here I am no movie star. I am a princess.

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