The nights can be long when you’re being chased by busses

My friend is quite ill. Just this week she was going in for a consultation for brain radiation for her brain tumors, which once stable, have now rapidly begun to grow. She is my age, with two teenage children, fighting cancer for the second time. Fighting to live to see her children grow to adults. She is a beautiful delightful woman; one of those people who listens carefully. She is real and truly kind. She is smart and brave. She has her moments when she wants to give up but she is nearly always positive, and she seems to have this part of her that believes with everything that it is possible she will live; despite what the docs say. And I believe her, more than I believe the oncologists.

There are times she will message me late late at night, in a panic, looking for words of comfort. These are the moments it hits, the panic, the pain, the fear; when you are awake in the silent darkness of the night, and you feel the panic swelling in your chest and throat like a balloon. Those are the nights you know you won’t make it. And you long for comfort.

What to say…I’ve confronted the issue of what to say a millions times, as I’m sure people have when they speak to me. Of course there are millions if articles online that talk about what to say. “we’ll get you through this”. Is a good answer. And also what not to say, “my mom, best friend, dad’s ex wife died from that”. (Bad bad thing to say). I’ve confronted the problem of what to say more than ever before, simply because I now know so many people living with cancer. Having cancer myself has made it harder, not easier, to know what to say–because I’m acutely aware of both the importance of reaching out to folks and the impossibility of touching the lonely place where they find themselves.

My friend is living what I fear most. I identify with her, and yet I am gratefully aware that I am not in the same situation she is. I am angry that she is not in the situation I am. That there really are no more treatment options available or her at this time, and she is still willing to do anything to live. All I could do was acknowledge the ways in which we are on the same path and be honest about the ways in which we are not, at least not right now: her children watch her go through chemo again and again; she continues to suffer the side effects over and over again; she must radically and painfully recalibrate the terms of her hard-won hope.

When I was first diagnosed, several people offered comfort with variations of the phrase, “I could get hit by a bus tomorrow.” Kindness motivates these words. They are driven by the desire to tell the cancer patient that she is not alone, that her condition is a universally human one: we are all mortal. Yet, it is the very glibness of the cliche that underlines just how abstract mortality is to the speaker. He does not truly believe that it will happen, only that it could; otherwise, the phrase would be unbearable to utter.

There is a difference between knowing that you could get hit by a bus and waking up to the knowledge that you have already been hit by a bus, that you didn’t die right away, but that your injuries will most likely kill you soon. We all know that we will die, but those of us with life-threatening chronic conditions live that knowledge in a different way. When well-meaning friends deny that difference, it only heightens for the cancer patient how lonely it is to be sucking on the bus’s tailpipe rather than glancing idly at its distant headlights.

I do not forget, however, I try not to get stuck and live the unrelenting knowledge of my own creeping mortality. Some days I am successful, some days that is not so easy. But I know as the texts and emails from my friend grow shorter and shorter that she feels alone and distant, playing a game of frogger with cancer busses each day, terrified of being splattered, And so, all I can say to my friend (and all I would want you to say to me) is: wherever this new therapy takes you, I’ll follow as near as I can, and I’ll be waving into the abyss that divides us.

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Into the ocean

Sometimes I feel like I’m floating in the ocean a mile from the shore. I can see people on the beach and sometimes I can even hear them. They are laughing and playing and lounging without a care in the world. But I can never step foot on that beach again.

Sometimes, when I get good news, or feel well, the waves bring me closer to shore. It is during these times, my feet can touch the bottom of the ocean and I feel the warm sand.  I find it much easier to live when I’m closer to the shore.  I don’t feel alone. There are times when people venture out toward me. I can talk to them and even splash in the shallow water together. I convince myself that I am a part of their world. But suddenly, at a moment’s notice, the waves pull me back, deep into the cold dark ocean. It’s okay. I can swim. But there is loss. I miss the camaraderie. I’m outside, once again… looking in. Looking in at a world I can never be a part of again. I grieve as the world gets smaller and smaller right in front of me.  I can see them on the beach..playing, dancing…eating…laughing…without a care in the world.

This life is very much different than my former life, but it is very real. I am always wet. My muscles and limbs can never find rest.  And it seems like no one understands. I know that no one certainly wants to come out and join me. As the deafening sound of the ocean crashes upon my ears, drowning out life on that shore.

And I try to wait it out as I tread water out here in the vast ocean. Hold my head above the water.  Hoping for good news once again.

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She may be weary

I’ve slept about 8 hours cumulative this week. Since Monday. Not an exaggeration. It’s frustrating. Prior to last night I would just toss and turn each night, however, last night the bone pain in my hips and chest and back became so severe the pain really radiates just taking my breath away making sleep impossible. It was a very unpleasant experience even moving from any position in bed. I finally got up at 6am took a long hot bath hoping it would help. It did not…

I am pretty miserable and this will likely continue for a couple more days before it dissipates. Which, nothing really helps. Tomorrow my friends are all coming over for a ‘book club’ meeting. It sounded like an awesome fun time when I scheduled it. Now I’m wondering how I’m going to do it. The hus said I should reschedule, but um no! I’m so tired of this disease ruling my life and I wanna see my friends! And I totally read the book so…it’s on!

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*Sigh*

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This is such a tough road. I am getting so tired of being sick and the pain and it being hard to get out of the house, which I am not really doing at all. I am starting to feel really isolated and it frustrates me. I have always been someone who plans, surrounded by people and activities and it’s hard to be so *homebound*. I feel like I’m 100. I miss seeing people, and feel disconnected. I am supposed to go out with my friend Meg today for a movie (a cheesy scary movie we both love!). But honestly, I am still exhausted and have terrible bone pain so I don’t know if I’m up to going. Really G? To sit in a movie theater? I know…but yes.

This disease attacks the body, but it also attacks your mind and spirit. So I am having a tough time right now. And I find it so difficult to keep my spirits lifted. I’m also getting scared again. I try to just focus on getting through the day, or this round of treatment, but then I look ahead, and it’s a long road in front of me this year. I may get a little window of feeling better before the next round of treatment, but then I look down the road to sct (if it happens) and I think, “am I up for that?” I don’t know…

This already seems like the longest year ever. I know I need to figure out how to focus on this moment, that this is temporary. And at the end of this year, I will (I better!) be done with all of this. Cancer doesn’t get to take more from me. I am already scared how much it has already taken from me.

She said she was sorry…but still

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Cujo Maggie took a running jump over the white dog and ottoman – and straight onto my lap…completely unexpected, but still rude. And, I think she may have punctured my uterus with her giant paws- which I am finished using, but still!

Now, she’s all apologetic, but I’m pretty sure her eyes are all bloodshot because she’s been smoking pot. It is legal here, ya know.

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