Huh?

whyeyeouddaSitting in the odd chair that has a midcentury feel, flat black leather, chrome legs and sleek lines. Nearly fit for my living room but it definitely screamed clinical. Does the Herman Miller medical line have chairs? Am I parked in one? My first hospital room had a few Herman Miller products. Not the products you want, like elegant swanky chairs, but heavy plastic antibacterial cabinetry on wheels. I wonder if I’d be paying attention to the bad news any better, or at all,  if the setting was like a Herman Miller living room display, sexy furniture from Design Outside of My Within Reach.

I have some strange hemorrhaging and swelling in my eyes. Plural, now both of them. I should have paid more attention at the eye-guys description of the issue at hand.  I know I’m going to be asked by others What’s going on with your eyes? Truth is, right now, I could care less of what is going on with them. I am singularly focused on how this impacts Alectinib, my anti-cancer treatment.

I’ll find out next week, if not before.  For now I wait.  Pretend that I’m not worried. Play 100-questions in my head.

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Sad, sad and more sad

A good friend of mine died.  She died of Ovarian Cancer.  I’ve added Ovarian Cancer to my “I hope you get cancer and die” list.

She was the first woman I really clicked with in cancer land.  Funny how we met.  We were both clients at Portland’s Immune Enhancement Project. She was tracking me.  She would schedule her appointments around mine for the chance that we would connect in the waiting room.  Apparently she was excited to see another “young one”.  She was talking to SW when I finished up with acupuncture.  While trying to drink the cold water in the miniature dixie cup she asked me what stage my lung cancer was.  I barely eked out, “it’s stage 4″.  Tears streaming down my cheeks; this was the first time I spoke it to someone.

The three of us left the small waiting room after being shushed several times by the practitioners. We grabbed a table and some beverages outside at a nearby pizza shop.  Marcy talked and I listened in awe.  Forget putting her on a pedestal, I placed her on top of Mt. Everest.  She was the complete opposite of the doom and gloom depression rift I was in.   She was determined to live.  Thankfully her determination was contagious.  She played a major part in helping me learn how to navigate cancer land.

For over 3-years, not many days went by without the two of us communicating.  In her final weeks that communication became nonexistent.  It was sad but I accepted it.  In my head I knew that it would be fine if we did not speak or hold hands one last time.  To my surprise, and nearly her entire home care team, she phoned me hours before her life ended.  As directed by her, I showed up at her bedside to hold her hand.  A 30-minute visit to say I love you and goodbye to her body was satisfying.  An email stating that she died later that night did not surprise me.

I miss my friend.

Read more about Marcy here.

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Work. Lots and lots of work.

Voila! Like magic the front yard was transformed into a thing of beauty! That is if you define magic by a handful of friends each swinging by at different points in a day to help you move dirt, plant greenery, and move more dirt.

Pots

How I managed to pull off 8-hours of working in the sun is a mystery. How I managed to get my body out of bed today, the day after, even a greater mystery. Heck, I’ll take what ever good comes my way!

A burst of energy is a treat. Using it to do some manual labor felt good. Working hard with a group. Being an active participant in a work party. Taking the same number of breaks as everyone else. Feeling and acting like the person I want to be. Satisfied with my ability to output.

Yes.  Satisfied with myself. Now that is magical.

B I G  thank you to Avery, Daryl, Stacy, SW and Geiger clan.

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It’s a…. BABY!

babycraftsRecently my husband and I co-hosted a baby shower. Friends who live a few houses down are the expecting couple. For them I’m sure this is a very scary/exciting/happy/terrifying time but for me it is happy; nothing but happy!

The gathering was filled with entertaining games, delicious food, and high quality friends and family. The perfect recipe for a fantastic time. The parents-to-be were happy and that should be all that matters.

Partnering with my husband, it was important that we both have a good time. We did. I’m fairly certain SW’s good time was based on mine and I’m okay with that. My good time was much deeper than the 3-hours of laughing and joking at the party. I enjoyed the change of focus for a few weeks. A welcomed perspective change. I did not think of aging, er not-aging. Thoughts of cancer and it’s side effects were pushed aside. My focus was on life. A new life. A new beginning. A clean slate. A precious pure start.

I understand why some believe that this cycle starts again after death. I am filled with a sense of calm, peace, and even joy thinking that could happen to me.

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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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