About sleeping.

Most days I’m so tired at the end of the day that I crash into my mattress at 10 pm and don’t wake up until 6 am or later.

Sometimes I wake up to use the bathroom at 4. Or 2. Sometimes I don’t get back to sleep.

Last night, this morning, I woke up at about 2 to use the bathroom. I also had a pretty strong headache, so I was up for a couple of hours.

Sometimes my brain spins with possibilities, both good and bad. Or regrets. It’s easy to start down the road of “I should have pushed back more at the first exam when I got brushed off.” Oh my goodness, the regret is so intense.

At some point over the past year, I got really hooked on the phrase “Don’t look back – you’re not going that way.” I was always someone who looked back. I used to wish I could go back to 7th grade, before I was obese, before I missed the boat in math class, and not get fat and ask for help in math. But that stuff is all gone and done, and all I have now is where I am.

That’s how it is with the cancer journey. It’s here. There is no going back now, so it’s time to look forward and try my best to leave any regrets along the side of the road. Those things get heavy after a while.

Also, I get to take lots of naps now. What if I had done things differently and I missed out on all these wonderful naps??

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I have a bad feeling.

I mean, I get that you’re supposed to stay positive. Overall, I really am. I think I’m doing a pretty good job of not dwelling on the unknown and all of the implied possibilities. I stopped googling radiation and chemo. I’m focusing on healing. I’m making future plans. I’m looking forward to being cancer-free.

But, from the very beginning, no matter how upbeat I have seemed, no matter what “good news” I have received, I just have a bad feeling that I can’t shake.

When my oncologist didn’t even open my folder or chart while we spoke and said I didn’t look like someone with Grade 2 endometrial cancer, even though that was what the pathology report found, I didn’t understand what he could possibly be basing that on. He said I was young and beautiful and that he hoped to downgrade me to a Grade 1 so that he could spare my ovaries and I could stay young and beautiful. Turns out, at the second pathology read? It was still Grade 2. My surgery was moved up a week. I still had to have my ovaries removed to be safe.

He read my CT scan and said it looked fine. He stopped himself from calling my tumor huge at my bedside the day of my release from the hospital. He told my mom that things looked promising.

I read the report. My CT scan showed mild emphysema, a borderline enlarged spleen, and some enlarged lymph nodes. I laughed for two days about the mild emphysema. No wonder it hurts me to run in the winter.

I just can’t shake the feeling that my oncologist is being all smiles until he has the facts to drop the hammer. He was so smooth, so upbeat about downgrading me and saving my ovaries. Like we were talking about the weather. We made the call about taking them when my surgeon was standing at the end of my bed while I was in the pre-op area and I had my IV in, minutes before I was wheeled to the OR, nurses buzzing around me.

I just keep remembering his words from my appointment on August 6th and hoping they’re true. He said that he saw a lot of people like me, five newly diagnosed patients every day. He said that, to me, it was a huge deal, but to him, I was not a bad case. That things were not urgent because this is a very slow-moving cancer. That in all likelihood we would take everything but the ovaries, and with it, all of the cancer, and I could move on with my life.

I’m keeping my fingers crossed, even though I have a bad feeling. I’m moving forward and looking up and taking each moment as it comes.

I especially look forward to writing the post that proves this post wrong.

The magic of walking.

Before my diagnosis, I was in a habit of taking a long walk every day on my lunch break. After my diagnosis, life became a slightly insane parade of lunch dates and rescheduled lunch dates, as well as vacation days to spend time with loved ones. The walks fell by the wayside, along with my daily yoga practice. My life was filled with people, always. I loved that part, but I missed my daily walks. I had come to view them as kind of a brainwash, a midday reset for whatever was getting me down that day.

When my surgeon released me from the hospital ten days ago, he said some words to me. I saw his mouth move, but pretty much the only thing I absorbed was “you’re cleared for long walks.” I started taking short, limping walks a few times a day. Wow, was I sore. Wow, did I tire quickly.

Yesterday, a friend drove me to the woods. Hiking had been another of my regular activities, before I got so exhausted from being sick. Getting into the woods yesterday was so special. Even though we walked on a plank pathway for most of our baby hike, it did me a lot of good to see leaves changing and hear birds singing.

Today, I took my first solo walk since surgery. It was ambitious – probably my longest walk yet. It’s good to get outside, to get walking.

You see things there like weeds growing through concrete, squirrels always with a nut, rabbits frozen, convinced you can’t see them. You see kitties skulking around the back, pugs that busted out of their backyard fence, the corner lots that are absolutely littered with flowers, cleared lots that have been reclaimed by grass.

You see backyard gardens with praying sunflowers as tall as trees and tomato plants groaning with their red and green burdens. You get to stick your face in flowering trees and inhale their sweet scent while bees buzz right nearby.

You might even talk to a guy who managed to grow two full-sized pumpkins, and when you ask him how on earth he did it, he will just shrug and say, “I just kept watering ’em.”

It’s that easy.

Just keep watering. Just keep going. Just keep walking.

Hurry up and wait.

I was warned that the cancer journey was one of hurry up and wait. It’s true, and I hate it. The surgery that hopefully removed all of the cancer was nine days ago, the pathology, I was told, will take ten days to come back… but my followup appointment with the oncologist isn’t until September 9th – another ten days.

Every day is an interesting mix of awesome and wretched thoughts. Anywhere from “I can’t wait to move on with my life and get back to normal” to “Maybe we should sell the house and use the proceeds to travel the world until I die.”

I’m trying to be a gracious wait-er. Trying to get into TV, but I’m just not. Trying to read, but I can’t focus and there are a lot of bad writers out there.

Trying not to lose my damn mind, basically.

What’s new with me.

I decided that I should probably dust off the old blog and write about what is happening over here.

Last month, I got an email that I had new results in my online medical record. I was almost a week out from outpatient surgery – a D&C to remove a polyp and see if I had fibroids. The procedure had gone well, polyp removed, nothing eventful except I had a hard time coming out of sedation. I completely forgot about the biopsy until I logged in to my medical record and saw “tissue sample” under test results. I remember thinking, “I forgot – the biopsy! Well I’ll see that this is normal and this whole thing will be behind me.”

Only, it didn’t quite go that way. Instead of something like “normal result,” I saw the words “endometrioid adenocarcinoma” and, sitting at my desk at work, I blurted out, “Oh, shit. That’s cancer!”

And I was off, on what my dear friend Cathy has accurately described as the roller coaster ride that is the cancer journey.

Right now, I’m home, recovering from a surgery that removed my entire reproductive system. I’m on another upward climb, every day part of a slow and jarring clack-clack-clack as I wait for the next event, the next crest and swoosh and rush: in this case, the pathology report that will come back 10 days after surgery.

I never knew that 10 days could be an eternity but here we are. I move from my bed to my recliner to my chair in the back yard to my bench on the front porch. I listlessly scroll Facebook for hours. I pull out the Fuck Cancer coloring book that my mother-in-law brought me and color for 10 minutes. I think about all of the stuff I could be doing with this time off, if my body was strong. I take short walks. I read support group posts, I research chemo and radiation side effects, and I freak myself the fuck out until I remember that I should live in today, just worry about the very next thing I have to do. For all I know, the surgery got all of the cancer and that’s that.

Mr. Thor said I need a distraction. I haven’t had much stomach for TV, but last night I started watching Queer Eye and that seems to be just about right for me. I figured writing might be a step in the right direction, even though I’ve left this blog to languish for so long I’m not sure if anyone is still reading. I’ll try to post more often.

Dear Anthony.

“Don’t let anyone tell you ever that you are supposed to stop mourning and missing people you’ve lost. What a crock. Our beloved people are forever…Leonard Cohen wrote that there are cracks in everything, and that’s how the light gets in. Stay cracked; don’t let people shame you into using caulking.”

-Anne Lamott, from a Facebook post

I wrote this post over 5 years ago, and I saved it in my drafts folder because I didn’t want to post anything too depressing, too down. I went through the effort of writing it… and frankly, Anthony deserves all of the writing I can give him.

It’s been just over three months since you died. I honestly thought I might get used to the fact that you were gone. Instead, you pop into my head almost every day. There is always something that makes me wish I could talk to you. Maybe it’s a crazy story I wish I could tell you, just to see that look on your face that says, “no way.” Or some personal victory that I know you would be proud of me for…like hitting my -100 pounds goal.

Some days when I just want to take a walk with you and laugh until I feel like I might fall over.

I feel like I am finally out of the rut I was in when we started walking back in June. What I can’t tell you now is that the sheer force of your friendship levered me up to a place where I could get out. The walks in the rain, the jumping back from dead snake skins, the time you told me to call you when I wanted to eat Zingers, the constant stream of text messages back and forth, the sitting on your enormous couch and hearing you tell a story about me for the first time that you remembered for 14 years.

What I thought when we reconnected and started our walks last year was that I was going to be a good friend to you. I was going to be there for you, no matter what you needed. But you didn’t need anything from me. Instead, you gave and gave, and sometimes I actually feel a little bit guilty because of all of the problems you listened to of mine, all of the advice you gave me, all of the support and encouragement you gave me.

I can’t remember giving you anything.

Actually. I gave you something that was hard for me to give. I tried to act like you weren’t dying. When you first told me that you were sick, you said, “don’t cry for me. I have had one hell of a good life.” When you called to tell me what they found in your brain, I held the phone upside down and sobbed, open-mouthed and silent, while you gave me the details. I talked about it cooly, in terms of facts. I joked that you just had to be an overachiever by filling yourself up with tumors, you couldn’t just settle for one.

The last time we talked on the phone, when I was supposed to come visit you in the hospital the next day, at the end of the call you just said, “Draker. Thank you.”

I knew then that we wouldn’t talk again.

I knew I wouldn’t see you the next day, or ever, after that.

I have a couple of pictures of you on my fridge, and sometimes when I walk by I feel weird for having them there. I printed them off your Facebook profile when we first started walking, and I actually used to have them hanging on my cubicle wall at work as reminders. Reminders to pray for you, reminders of what your smile looked like, reminders that there existed on earth a staggering depth of strength inside of one human, reminders that whatever I was facing, I could do it.

Sometimes, I feel weird for having them there. But most of the time, when I walk by, I just say, “Hey, buddy. Miss you.”

why

One of the main reasons that I stopped blogging for so long last time (almost two years) was because of an awkward conversation that I had with someone who didn’t know me very well. She asked me, not kindly, what the point was of writing about myself. Why would I feel the need to share all of this personal information with strangers.

At the time, I thought to myself, well. I have boundaries. I very rarely write about everything, especially not the Big Nasty Truths that lurk in the darker corners of my life. I don’t cut myself open and bleed all over the internet, although maybe to some it seems that way. I just tend to let myself think out loud.

And also, at that time, I was extremely careful about what I shared, who I mentioned, and I had a lot of rules for myself with blogging. I’m about 96% certain this person had never read my blog. I wondered why she was judging me, and judging me to my face at that. I just said, “well, I only write about specific things, and nothing too personal. I only share what I feel comfortable sharing.”

But that conversation kept haunting me, even as I tried half-heartedly to keep up my blog. Why DID I want to shave off pieces of my life and leave them on the internet? Because I’ve been doing it for well over a decade? Because I did it one day, and I realized that I actually loved it. I even made some friends I never would have known otherwise because of this sharing. I have always been compelled to write things down as a way of making sense of life, and I think harder about the words I use when I write for an audience, even if it’s an audience of one.

But this person’s question, and her snide tone when she asked the question, became a stone in my shoe. And the stone became a boulder.

Why, though?

Why did it matter to me that this person, who I don’t really even respect that much, didn’t understand or approve of my outlet?

Looking back at myself that day, I wish I had the guts to say, “I just do it. It’s what I do. I like it.”

Grin.

Restricted access.

My husband and I have been burning up our Empire Pass this summer at New York State Parks. We have been hiking 1-2 parks per weekend, with the goal of hiking the gorge trails we missed when they were closed over the winter.

I don’t think much of this now, beyond making sure I wear comfortable shoes and clothes, that I have enough water and a snack if we will be gone for a few hours.

But there was a time in my life when I weighed 335 pounds. Going up one flight of stairs was a true challenge. Hiking an uphill trail, or a trail with hundreds of stairs, for any distance, would have been impossible. I tried. I have distinct memories of my more in shape friends dragging me along to hike with them. I’m sure they meant well, but I have a handful of memories that are some of the most humiliating experiences of my life.

Of course, I hated being obese. Every time I saw the condition listed on my medical chart, I died a little bit inside. I was ashamed of my size, of my inability to lose weight, my inability to blend into a crowd, and my inability to keep up with “normal” people.

What I didn’t know until I started hiking last year was how much I have been missing. I have literally stood on mountain tops and looked across valleys after challenging hikes that would have been impossible for me when I was carrying the weight of an adult male on my back with me. I have seen views that took my breath away after climbing over 200 stairs. I have literally walked circles up and down ravines on mountain tops. I have clambered up hillsides and stone stairs and steep, packed down trails.

And every time, I try to take a moment to remember: I never could have done this before. I almost always say it out loud. I never could have seen this before.

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Buttermilk Falls State Park, Ithaca, NY

 

My lucky day.

Today is Friday the 13th. Perhaps it’s my stubborn nature, but I have always refused to believe a date on the calendar can be unlucky – so I declared it lucky instead.

Tonight, I went to an opening reception of a gallery show called “The Rising” featuring my favorite artist, GC Myers. The first time I ever saw one of his paintings, I literally stopped dead in my tracks in the middle of a sidewalk because I saw myself. Suddenly, I wasn’t alone anymore. I was right there, behind glass, on a canvas, looking back at myself from a frame.

Tonight, I saw it again. I saw light that got caught in my throat, black teals that swept my breath out of my body, purple twisting trees that anchored me, and always, always, always, the sky that opened my eyes and made them swim in tears. And the red trees. I can’t describe what they mean to me, because they’re so vast. The trees tell me more about myself every time I see them. They’re solitary, but are they alone? They’re what I focus on first, but are they really the most important thing?

I love going to these shows because it’s like seeing an old friend and wondering if you remember them wrong, or if they’ve changed a bit since you last saw them. The work is familiar, but I have to look twice to be totally sure.

It seems that, in every show, I find one or two pieces that cut straight through to my soul – when I see them, I gasp, I feel exposed and found out, I see myself in a frame on a wall on Market Street in Corning, NY and wonder how I can be standing there in the art gallery having a conversation or holding my husband’s hand when I am stretched across canvas and bound in a frame.

This show, those pieces were “Idyllia” and “An Orderly Life.”

The last show, the pieces were “Revealed in Light” and “Empowered.”

Check out the show, either in person at West End Gallery or online here.  And definitely check out the site Redtree Times for more information about the work, straight from the artist.

I love this work, and I love this show, and I deeply appreciate this artist for his willingness to put it out there and do the work. All of the work. It reminds me how much more work I have to do.

Workflow.

I woke up today feeling mentally ragged. I was feeling confused and fuzzy. I couldn’t identify my mood, if there was anything wrong, I just felt off. Unable. My brain seemed to be shouting at me in static. I have come to recognize this static as the herald of a bad ADHD day. I was an hour late to my routine – I didn’t even get out of bed with intent until nearly 9 am, when I prefer to be seated and ready to roll, writing, by 8 am. Today, I knew it would be a battle to get to the keyboard.

So how did I get started today, when the static was deafening? I stuck to my routine, even though it was an hour late. I picked up The Right to Write by Julia Cameron. I opened it while sitting at my desk. Immediately, my computer seemed to be mocking me. It was just there outside of my left side field of vision, and I felt threatened by it and all of the unstarted and unfinished work I would find when I woke it up.

I moved my home base for reading. I took the book out to the love seat. I read 4 or 5 chapters today, just powering through until I could feel the static begin to clear and my thoughts begin to untangle from a knotted jumble to a gentle serpentine. I let the pressure to perform melt away. I let the idea of writing a book or finishing anything at all just float away. I decided to redefine my idea of successfully writing to just that – successfully writing. Sitting here, as I am doing now, dumping my brain out onto a page. That’s all I need to do. I say “I need to” but not in that harsh way that I used to say it. I used to try to flog myself to the page with “needs and shoulds” instead of just writing for the joy and clarity that it brings.

Today while I was reading, I read about creative monsters. These are people who have stifled or even mocked or insulted my creativity. I started remembering the wounds to my creativity, wounds from the past. But at the same time I had those thoughts, I was so SO sick of thinking them. I am so tired of replaying my past hurts and I feel a ferocious desire to MOVE THE “F” ON. MTFO. There is no legitimate reason for me to let the misery of a person in the past define my future. To let some words that some careless person let fly 20 or more years ago continue to make me bleed. It’s craziness. And I just thought, I release that. I am finally sick of my own bullshit. I am so sick of all of my “reasons.”

Because the kicker is that they aren’t reasons at all. They are excuses. I really believe that reasons are few but excuses are plentiful. And in light of that, I’m just going to get to work.