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.”

I should have known better

I should have known better. I saw “Breast Cancer” on the caller I.D. when I picked up my landline—the line only my parents and telemarketers use. I pushed talk. I should have known better. We beat ourselves up for should have known better.

A pause before the caller picked up—a surefire sign of a telemarketer—“You are a tough lady to reach!” My eyebrows knit together, do I know her? She is perky.

“I’m calling for the Breast Cancer something something.”  I think of Debby. “We provide services for women who are dealing with breast cancer.”  I think of Cheri. “Can I put a postcard in the mail and see if you can donate a little something to help us out?” She sounds too damn perky to be calling me about cancer.

“You can put it in the mail and I’ll look at it and see what extra I have after my other donations.” I answer, terse. I’m suspect that she’s some random charity. I’m not sure if I have donated to them before. I think of Meagan. I think of Hannah and how my latest cancer donation body part is pancreatic.

“Aren’t you an angel!” She cheers, sweetness dripping from her lips, through the landline and all over my sudden and involuntary mourning. I can’t even stop to tell her to take me off her list. I can’t stop to tell her just send the damn thing. I can’t stop to tell her to tone done the syrup. I pull the phone away from my ear and click END.

I’m swamped with guilt. She was just doing her job. I have tears in my eyes.   I want to apologize without having to talk to her. I want to say, “It’s not that I don’t want to give you money. My friends just keep dying.”

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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.

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Does This Oxygen Tank Make Me Look Badass?

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Heaving the heavy pack onto my shoulders after so many years was both familiar and forgotten.

The closest thing I’d felt to its bulky weight was the solid smack of my oxygen tank hanging loosely on the same shoulder for 2 ½ years.  “Tank’s” nasal cannula tube draped down my back, the prongs pulling in protest against my nostrils as the regulator pulsed puffs of oxygen.

The pack—which I affectionately referred to as the BMW of backpacks—had a sleek, silver design and was everything my silver oxygen tank was not.  Adventure. Activity.  Independence.  Healthy. 

But that was Hiking Me

Current Me is short of breath, fatigued by even the gentlest of hikes and aware of the way the hip belt digs into my stomach from the extra 35 pounds of prednisone weight.  Current Me hikes alone so that I can get back to Hiking Me without being embarrassed at my pace and how a relatively flat hike can kick my ass from here to there. 

Surprisingly, now that Tank is no longer my companion, Current Me savors the ability to hike at all.   My pride is on my sweaty back, my new fleece pullover and my muddy boots.

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.

 

The Ten Essentials…a survival guide

The Essentials

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As a former backpack trip leader, I’d go over the packing list with my teen participants before we headed out into the Olympic National Park.  One of the things we would go over was The Ten Essentials.  These are things that are generally recognized as the must haves of the camping/hiking world such as a knife, compass, first aid kit and extra food.

It is how you survive if the going gets rough.

When I think about The Ten Essentials of my regular life—my life that has integrated with my healthcare—I can think of a different list of must haves. 

1. Warm Blanket– These are available in the hospital during treatments.  The warm blanket wraps up anything that is freaking you out, stressing you out, pissing you off in a comforting sheet of warmth.  It is without a doubt the most nurturing object in a hospital.

2.  Nurses- Whether it is their attentive care or the smart ass remark they make, nurses are the human version of the warm blanket.

3.  A sense of humor-some of the things that will happen with your doctors will be hilarious.  Don’t miss that because you are so busy “being sick” that you can’t laugh at the insanity that you life has become.

4.  Friends who remember– These are the little things.  My best friend tries very hard to remember when my doctor appointments or infusions are.  She doesn’t come to these with me, but she tries to text and check-in.  Friends who remember are essential while you are trying to act like visiting the hospital this often is “normal.”  Which it is not.

5.  Perspective– Remember that other people often have it worse than you do.

6.  Permission-Remember that even though #5 is true, that doesn’t make your suffering less valid.  Pain is pain.  Struggle is struggle.  You are allowed to have a crappy day, even if someone else had a crappier one.

7.  Music-Have something to listen to that makes you want to a) sing along and/or b)dance.  I like musicals, but whatever revs your engine.

8.  “I’d still like you” people–  You should have people who like you even if you are venting, ranting, swearing and storming.  These are the people who will not judge you when you pitch a fit.  They will be glad you called them.  They will not make you feel like you need to say, “Sorry I went off about that.”

9.  Something good to drink-Coke Slurpee, coffee, tea, wine, whatever.  Have something you enjoy.  This drink should be the warm blanket of the beverage world.

10. A flashlight-cause that’s always a good idea.

I’m Right Where I Left Me

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Coming Back

Being back on the rugged Washington Coast at the ocean after 6 years, disease, an oxygen tank and a life overhaul was like wrapping up in a comfortable warm blanket.  Walking the beach, a grin glued to my face, I looked up at the trees on the ocean. These trees are badass.  They lean recklessly into the wind.  Their branches sparse and thick.  Not a place for spindly branches with the protection of the forest. Trees on the ocean need to be able to stomach the wind and the salt water and be the first line of whatever came off the Pacific.  These were Don’t screw with me trees.  These trees were tested.  They weren’t as full or even as the ones further back in the rainforest.  But they had seen worse.

Me and those trees.  Worn and beaten. A little worse for wear.  Still standing.