Some days I’m just not as cool as I would like to be…a patient’s guide.

I’ve been poked, prodded, xrayed, cat scanned, operated on, radiated, examined and infused. I am guinea pig. I am a patient.

Once a month I spend a couple hours sitting in a foam green reclining chair having an immunosuppressant shot through my veins. The nurses find a vein, we both hope for a one-poke success rate and we get to the business of giving me a—wait for it—$14,000 medication in a small baggy the size of a sandwich Ziploc.   Like having a Hyundai for your veins. It chills me a little so I take advantage of the warm blankets they have, open some carefully chosen snacks and entertain myself for the next 2 hours.

Sometime a close friend comes. A small, selective group of individuals have been allowed to observe this, to be welcomed into that part of my life. I like it when they come.   I like pulling back the curtain on that part of my life. It is the part they have only heard me reference in conversation. I like when they hear one of the nurses walk by and yell, “Hey Hot Pants!” to me.

Today I was solo. Solitude in the hospital is often interrupted by bells in the hallways, nurses conversations at the stations outside my room door and the alarm bells that go off on the IV machine’s mechanics. That’ll give you a jolt. When people say, “I’m so sorry you have to do that.” I point out that I get to sit quietly in a chair for 2 hours and pretty much not move.

Forced Be Still time.

And then there are days like today.

Have you ever wondered what it would be like to have someone ram a bar of soap under the surface of your forearm? Ever wondered what it would feel like to notice that your wrist was suddenly aching more than the typical irritation of where the IV goes in? I know.

I pulled the gauze and tape back, trying to get the tug and pull on my skin to ease, hoping that would help the ache. When I pulled it back, there sat a lump on my forearm, right near my wrist. It was the size of a bar of soap. My eyes bugged and seen it been there me quickly turned to freaked out me.

I grabbed the button to call the nurses and pressed, hearing the beep start outside my door. 2 nurses came in and saw the enormous lump on my arm. They seemed unfazed by it, calling it an infiltration and explaining that the medication apparently had escaped my veins and was now making the lump in my arm. Did they not see the grotesque bulge? Would it have killed them to summon some horror or gasp at the weirdness? Something? Something to act like it was a little bit worthy of a small freak out?

Next time I’m going to heed the self-help books and ask for what I need. It will sound something like this, “Nurse…I need you to say, ‘Holy crap, that’s a biggie. No wonder you panicked and knocked the empty Coke can off the chair’s tray. Let’s just put some heat on that and give it some time to go down.’”

Either that or they could have opened with, “That is an alien baby inside there so we’re going to need you to put this heat on it to make the birth easier.”

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Yes, I quoted Oprah. So sue me. A tree lover’s guide to cancer and the woods.

What I know for sure regarding grief and nature.

Yes, I did it. I quoted Oprah. I’m not proud of it but the line came to me and I’m going to own it.

This weekend I was reminded of a few things I know for sure.   I escaped this weekend. Broke the chains of laundry. Tore off the shackles of dishes and vacuuming. Late on Friday night—in a moment of spontaneous decision-making—I hopped online, booked a hotel room and packed a bag. Then, like a kid who’s just gotten away with something, I smiled, crawled into bed and set my alarm to make an early ferry.

I had to.

Maybe it was the residue of the previous weekend.   I’d spent the evening with a 25-year old friend who is knee-deep in the trenches of pancreatic cancer. Not good.

Not just not good. Bad.

I am so tired of cancer. I am tired of its systematic and relentless pursuit of people I love. I resent the way it takes who it wants regardless of circumstance, character or age. So you can appreciate why I didn’t give a damn about my dishes or the fact that there are three Amazon Prime boxes sitting in my living room with their contents strewn about. All of this warranted ACTION on my part.

Get the hell out of town. Run for the woods. Head to the Hoh Rain Forest.

It needed to be a little inconvenient. The ferry ride, the 3+ hour drive. You see, the inconvenience underlined the significance of leaving. I needed to be away, tucked beneath Sitka Spruce and Douglas Firs well over 200 feet. Moss blankets everything from boulders to every inch of branches that reach out like fuzzy fingers. I needed the serenade of the Hoh River, its conversation, a loud party full of light chitchat. I longed for the solitude of a trail where I go at my pace and stop when I want to take pictures (even if I already stopped a minute ago.) I want the freedom to jump when thunder booms above me and to leave my hood down when the downpour comes. I want to take the untouched side trail—the soggy ferns soaking my shorts as my thighs pushed them back with each step—up to the waterfall to get a better photo and to stand there and close my eyes.

Normally, whenever I return to the trailhead, to the comfort of my car and whatever snacks I’ve left behind, there is a sense of pride. An I did it. This time I felt that, but it was different. Something about the forest opens me.

I text a video of the waterfall to my 25 year old friend.

Me: I sent you a waterfall. Early birthday present.

My friend: Thank you!!!!!!!

Me: I mentally took you on the hike. I hope you aren’t sore.

My friend: It was like I was physically there!! My legs are killing me! How many miles was that again?

Me: Just shy of 6. I have to tell you, you weren’t very helpful when we found ourselves on the trail with a big elk about 30 ft. ahead and another one about 30 ft. behind (with their family peering in from the bushes.) Otherwise, you were a trooper.

My friend: Oh my gosh!!! I bet I was useless. “Oh look, large and dangerous mammals. LET’S PLAY WITH THEM!!!”

Me: I thought when I had to tell you to stop trying to pet them was the real low point.

My friend: That was the low point. Even their antlers are furry!

Somewhere during the texting conversation the tears started. Tears of loss, of pent up energy, of fatigue. These were tears of relief. Relief that we could still play. Relief that we could pretend we had hiked and faced down some elk together. Tears that sometimes the best way to connect is to talk about what you wish you did rather than what you have to do.

Hoh waterfall Hoh River

Hiking in the Rain: A Love Story.

 

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Northwest Drizzle is the weather of solitude.

On a hike I pulled my red baseball hat down further to shield me from the rain and pulled my black Gore-Tex hood over my head. By the time I left, my jeans would be heavier than when I arrived from the continual drops that soaked into the cotton.  Each step, a splotch and squish of the trail, was littered with puddles that squirted their muddy contents on the calves of my cheap and well-worn Old Navy jeans.  As the trail dipped down, dodging the trees to sneak between them, the familiar heft of my hiking pack skidded slightly against my back.  It held in place by somewhat tight shoulder straps and a snug sternum strap across my chest.  In the Northwest, the earth smelled warm and damp after a rain, a natural baptism.

I never minded the rain.

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Mother’s Day Casualties

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My hands have been typing for 5 hours today.   Solid.  When I was done, I’d written 9380 words for a grand total of 22 glorious pages.  To be totally honest, I didn’t have to think up most of the words, they were already in pen in my notebook. 

But it is Mother’s Day.  And, as much as my own mother gets her day and her shout out, I’ve been thinking a lot more today about all the folks for whom Mother’s Day is a minefield. 

1)   A dear friend who only days ago had her mom’s funeral.   

2)   A mother whose college-age daughter passed less than 2 months ago. 

3)   A new mom who is celebrating her first Mother’s Day without her mom who passed when she was 17. 

4)   All the women who want to be moms but are pounding their fists against the wall of infertility.

So why the words you ask?  Why the explosion of typing bonanza?  Why risk my fingers falling off?  What do these words have to do with the above people?

Simple.  I’d been holding onto the words of #2’s daughter (my friend.)  Hours of conversation, sharing and openness have been tucked away in my writing notebook.    For weeks they have been talking to me (nagging me really, but I’m trying to be nice.) 

“Hey, you need to share us with her mom…this will mean a lot to her.”

And there is nothing like the dead to prompt me into action. 

So I text her mom…

Me:  Would you like to have our early conversations?  See the things she shared?  Her answers to questions?

Her mom:  Oh [insert my name] that would be wonderful!

And when I am tempted to apologize to her for how ridiculously long it is—22 pages? I mean  really would it kill me to revise??  I warn her to get comfy before she sits down to read.  I am tempted to warn her that—even though it is over text—that it is heavy.  That her daughter says things like “I’m not dead yet.”  But I don’t warn her.  There’s nothing I could say that she hasn’t thought, heard or experienced in the last few years of this.   Instead, I give her her daughter’s words—and with it, many of mine, many of my sharings—and hope that she finds it helpful and warming to the soul.  

Me and My Sudden Yoga Nature

Recently–in a moment of Who the hell knows what’s happening!–I became a practitioner of Spontaneous Yoga.  Yoga that required no training, no class, no online video, just walked inside and within 2 feet of the door dropped to my knees in a pose that looked something like this.

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It is a called balasana pose—according to the always accurate internet—but I won’t insult yoga aficionados by presuming to understand what or how to do it correctly.

Here was my method:

1)   drop my bags

2)   plunge to my knees

3)   smush my face on the carpet

4)   fling my hands in front of me

I am fairly certain I didn’t look like the picture.  Put her in jeans, chop the hair and throw a sweatshirt on her and tennis shoes and the picture is clearer.  She—on the other hand—looks like she meant to do that.   My sudden yoga nature appeared unexpectedly and without permission.

It looked a lot like prayer, but a less romantic vision.  Had someone been in the room, their comment wouldn’t have been, “Look at that quiet moment with God,” but more likely, “Did she just slip on something?   Should we call a doctor?”

Mostly I was impressed with the ability of my life to drop me to my knees.   I had forgotten the way an experience, a conversation, a moment, could liquefy the bones in your legs and—like a bag of potatoes—drop you, rendering you helpless on the floor.

Suddenly the floor felt welcoming, like an old friend who says “Where ya been?”  The kind of friend you don’t see very often, but when you do, one of you inevitably says, “Why don’t we do this more often?!”

When I fell to the floor—the carpet brushing my cheeks with threads of comfort—I heard it say, “It’s safer down here anyway.  Stay as long as you like.”

The truth was—in that moment—life had floored me, just like my legs had.  Falling to the floor was a physical manifestation of having the energy sucked out of me.  It caught me off guard.   But walking in the door, away from the car, from all the noise outside, from all the everything, well, I was no match.

Standing is overrated anyway.

When I’m ready, I’ll say a prayer….then look for lint.

Boils, Blood and Baffled…and we’re just getting started.

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“Well let’s see what’s going on” the doctor says.  She is older than I am, likely in her 50’s and warm.  The fluorescent lights brighten the windowless room.

My dad is quiet in the chair to the side while I sit on the exam table, my legs dangling beneath me like a kid on the bars at school.  In a t-shirt and sweats, I look like I’m hanging out.  I look like I’m fine.  I wonder if the doctor thinks, “She’s 36, why is her dad here?”

“Well…” I hesitate.  Then I scoot back so my legs are straight in front of me and I carefully pull both of the pant legs of my thick cotton sweats up to my knees.

“Oh my.”  She says. I’m not sure if this is what doctors are supposed to say, but I appreciate her honesty.  I am glad she doesn’t hide her shock like other doctors might.  Her oh my validates what’s happening.  It gives me a little doctor street cred.

It acknowledges I am not imagining how hideous this is.

From the knees down, my legs have 20 boils all over them.  Each one to two inches in diameter and easily ½ an inch off of the skin.  They are full, deep red and raw from the blood beneath the surface and they hurt like hell.

When I start to cry around her later from the cumulative stress of the past 7 days of this, she comes over to my side and hugs me.

 

Best Communication Tool Ever

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If you want to know one of the gold standard phrases for effective communication with another human being, say this outloud.   NOW.

“Do you want me to listen, or do you want me to comment?”

Did you exhale right then as you heard it in your own mind?  Were you hit with a wave of peace at the thought?  Did you think of a list of people you would like to hear this from in your real world?  Family members?  Friends? Spouses?  Co-workers? Parents?  Keep going, the list is long.  The idea that we could decide how people respond to our sharings is powerful.  The idea that we can request listening only as an option is unheard of.   Too often someone gives their own commentary on our sharings when we aren’t looking for that.

Denny McLoughlin coined the phrase “Do you want me to listen or do you want me to comment?” and I’ve eaten it whole.  It also works great with teenagers if you curious.  Teenagers love it.   The teens I’ve taught this to plead with me, “Will you teach that to my parents?”

There have been a number of times, at the camp I worked at, when a teen shared something personal and heartfelt with me.  I responded with “Do you want me to listen or comment?”

The teen would say, “Listen.”

And I would listen. I would usually have things to say, but I would bite my tongue and try to enjoy the fact that the only thing I had to do right then was Listen.  Not come up with something brilliant, I only had to hear them.

Then, after listening, nodding and soaking up what they said, they almost always said, “Ok, you can comment now.”

It is empowering to control who gets to comment on your life.  And when they do comment, it is because we invited them in, rather than finding out they had broken down the door.

This line tends to go hand in hand with another one of Denny’s teachings.

“Any unasked for advice is criticism.”

Sit with that for a second—Any unasked for advice is criticism—and think of the number of times someone has suggested what you should do, or how you should feel, or how you need to  react to some situation.  Did you want to punch them?  Did you find yourself suddenly annoyed?  Was it maybe because their comments felt like they were saying, “You aren’t doing this right.”?

This happens a lot in the health world.  If you have a disease, people have opinions.

And suggestions.

And comments.

And tips.

Some of my personal favorites are “Have you ever thought of seeing a specialist about this?” 

I also remember repeatedly being told, “Have you talked to a naturopath?”

Other times their opinions came in the form of how to handle what was happening, “You know you just need to stay positive.” 

All of these types of comments, these comments that were not requested, are intended to help.  They are intended to show me how much they care and want to be supportive.  But the reality is they often have the opposite effect.

Of course I have thought of seeing a specialist.  I AM seeing a specialist.  I am seeing multiple specialists.  I’ve got a whole team of special people. I’m up to my neck in specialists.  (If you worry a disease will affect your ability to be sarcastic, I am here to reassure you, it will not.)

No, I have not seen a naturopath.  I have nothing against them, but I’m already pretty overwhelmed by all the other stuff this disease entails. 

And lastly,  I’m don’t always feel positive.  Maybe I’m not supposed to always feel positive.  When you suggest that I should be positive, and I don’t feel like it—when I am sick and tired of being sick and tired—you indirectly suggest that I am not handling this the “right” way. 

Unasked for advice is criticism.  Even unintended.  It is why we bristle when we hear it.  It is why our eyebrows knit together, why we take a deep breath, why we bite our tongue.

Instead, here are some comments I find immensely more helpful.  Feel free to steal them.

“Sounds like a lot to manage.  Can I bring you chocolate?”

“Any awesomely weird side-effects from the drugs you want to talk about?” 

“If you ever want to bitch about this, feel free to call.  I’m all ears.” 

 

Now that’s the kind of comment I want to hear.