Tag Archives: cancer

Empathy Cards by Emily McDowell

11 May

Hi.

I’m still really jetlagged and exhausted and processing what the last two weeks away were like – post on that to come – but in the meantime I needed to share this:

Lemons

After my diagnosis, as I slowly told the people around me what was happening, I got quite a few comments that I can only describe as ranging from off-putting to down right fucked up. Now, I’m not blaming anyone. I get that people don’t know what to say. It’s hard. Hell, there were times my husband and I didn’t know what to say to EACH OTHER. Searching for something to say, people google things. They offer suggestions to dietary changes or exercise or some random clinical trial that saved their cousin Sal. They tell me that whatever doesn’t kill me would make me stronger. They tell me that now I have to live my life to the fullest, appreciate everything – as if I were taking it all for granted beforehand. I know they’re trying. But often these sorts of suggestions just increased the overwhelming feeling of isolation that I already have. And the feeling of isolation is one of the hardest aspects of having cancer.

Enter Empathy Cards.

Emily McDowell, a cancer survivor, designed these cards to try to fill the huge hole where the sentiment implied by “Get Well Soon” just doesn’t.

“The most difficult thing about my illness was the fact that it was so lonely,” she says. One of the reasons was “friends and family either disappearing because they didn’t know what to say or well-intentioned people saying the wrong thing. So one of the most difficult things about being sick was feeling really alienated from everyone that I knew.”

I think these cards are amazing. More information about her work is here.

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I think they sort of give a voice when there’s so little to say. Also the lemon one, up top, what is that about?? I’ve lost count of the number of people who, upon learning that I had cancer, told me about someone they know who died. What is my response supposed to be to that?

“Um, thanks I guess?”

Anyway, good on Emily for making these.

I’ll probably have another post later today about THE TRIP.

Peace, love and starbursts,

Ally

“Do you know what the problem with living in a fishbowl is? Everyone can see you.”

10 Mar
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“Nothing in life will call upon us to be more courageous than facing the fact that it ends. But on the other side of heartbreak is wisdom.”

I watched Wish I Was Here this weekend, the movie that Zach Braff kickstarted (to much kerfuffle). Much like Garden State it’s overly sentimental with far too many slow-mo montages and a very precious indie rock soundtrack. It’s also funny, charming, unbelievable well cast and heartbreakingly sad.

And it’s very much about cancer.

I can already hear the “Ally, so are lots of things.” Yes, this is true. Cancer is pretty damn pervasive. Since I was diagnosed I’ve read about 4 different novels all of which at some point deal with cancer. And this was certainly not something I was seeking out. It just happened. It’s just there. I get that. Basically if you live long enough, you’re either going to be directly affected or someone you love will.

So this makes cancer a bit different from most other disease. Because if it’s something we can easily connect to on a personal experience level then we are bound to have strong feelings about it.

Let me back up a bit – so I was watching Wish I Was Here this weekend and I had a small panic attack. There was the proverbial death scene and while I wasn’t completely emotional saturated, I felt the walls unhinge and sort of creep up on me. I felt my chest get tight. I felt the panic setting in.

My husband noticed and offered to shut it off, but that felt silly. I can’t censor myself from every cancer/death scene in the world. I’ll never read or watch anything again, right?

This isn’t the first time this happened. The first time was during an episode of Orphan Black. My favorite character Cosima got sick. (No spoilers!)

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I was watching this during a time that my parents were staying with me for my mother’s chemotherapy. The big issue was that they didn’t know about my cancer. I kept it a secret for six months because my mother was scheduled to have a stem cell procedure and I was afraid if she knew about me, she wouldn’t go through with it. (I was right.) So aside from dealing with my own diagnosis and my mother’s illness I was also carrying around this boulder-sized secret. Needless to say when the character Cosima was sick, it was bad for me.

I’ve made an effort to figure out how to keep these things at a distance. How not to feel immediately dismantled by a character’s death in a book or a movie or a television show.

But it’s hard.

And part of why it’s hard is because people have a really significant connection to cancer. Significant connections lead to strong feelings.

Strong feelings, unfortunately can lead to judgement.

This article was published by the New York Times yesterday. It’s about a treatment called cold capping. Cold capping is essentially an option for chemotherapy patients that prevents hair loss by slowing down the metabolic rate in hair follicles reducing the effects of chemotherapy on the scalp. Basically, chemo kills quickly dividing cells, like cancer cells, (good) but also hair follicles and nails (bad).

This treatment is expensive, not covered by insurance, and completely optional. What it does is provide some people with a degree of privacy should they want it. And also a degree of normalcy. You would think that something like this would only be met with appreciation. It’s there for people who want to use it.

That is not the case.

I’m going to post here some of the facebook comments that accompanied the article. To preserve people’s privacy I removed everything but the text which is unchanged.

“My hair was the last thing I was concerned about.”

“Main concern was saving my life!! I’ve met other patients whose value system was as superficial. Could not relate at all.”

“This is like us soldiers liberating internment camps and giving the women in rags makeup.”

Honestly, saving hair should be the last things on your mind. So what if your bald for a little while? You’re beautiful no matter what!”

“I passed on this. My health was more important than my hair.”

“It’s just hair, and thankfully should you become a survivor, it will grow back.”

“It’s just HAIR already! I survived and now have tons of hair, more importantly – lots more LIFE ahead of me!”

“Be a free spirit and don’t give a f#%k”

“Vanity in the face of death. Only in America.”

“I was more concerned with living.”

“Having cancer doesn’t excuse vanity.”

“Vanity knows no bounds”

If you’re surprised by the judgement then you haven’t spent much time in Cancerland.

Angelina Jolie had a preventative mastectomy when she was diagnosed with the BRAC gene. Those who have it (approximately 10% of the population) have an 80% chance of getting breast cancer. Preemptively removing healthy breasts is a terrifying and difficult decision.

These people are collectively referred to as previvors because they are survivors of predispositional cancer.

This too, even in the cancer community, was met with a snort of disgust. On a forum I came across the following quote: “having a predisposition and getting the disease should not be compared.”

Really? Because they both sound pretty damn scary to me. Cancer sucks. Mastectomy sucks. Fearing cancer sucks. Family history sucks. Let ’em in the pink tent. Unfortunately, there’s plenty of room.

Which brings me back to Wish I Was Here. There’s a great line in that movie about being brave. Zach Braff’s character is admonishing his brother for being cowardly in the face of his father’s impending death and he says:

“Do you know what the problem with living in a fishbowl is? Everyone can see you.”

The internet is a fishbowl. Cancer is a fishbowl. Privacy, control, and vanity are not the same thing. You don’t get a special reward for being “only” Stage 1. Trust me. And on the flip-side invasive cancer is not a platform from which you can stand on high and look down on people who don’t want to become a statistic.

Be nice to each other. Life is short. For some, it’s even shorter.

Peace, Love and Starbursts,

Ally

Greetings from Niflheim!*

25 Feb

That about sums up my opinion on winter these days. We used to be buddies. Not so much anymore.

I can’t remember the last time I looked forward to a spring as much as I am looking forward to this one.

So in other news, I’m still alive and well and managing and all that fun stuff post-everything. And I’m still hearing from people who have either read the cancer blog or something stupid I said on twitter and who contacted me about it. I think that’s really great because the whole point of writing what I did, and you know, LIFE is to make connections with other people. To say: this looks like that. I feel like you. You’re like me.

Connections.

I’ve been writing a lot lately. Still working on Palimpsest, the scifi novel that might kill me first, and that’s going well. I almost want to say really well but I don’t want to jinx it so mums the word on P——–t.

Mums, I tell you.

I have also been working on poems which has been good cause the part of my brain that writes fiction and the part of my brain that writes poetry are not the same part. My poetry part has been snoring like a log for the last few months. It’s good to see it still works (after large quantities of tea, begging and bribery, that is).

Some people go to support groups or talk to psychologists. I write poems and share them with strangers on the internet. Po-tae-to, Po-tah-to. Connection is a powerful coping tool.

Here’s a few that were lucky enough to find a home in this world. I am eternally grateful to all the editors who took these poems and helped share them. (See above about that whole connections thing.)

After Diagnosis, Chemo and Dog-Eared are all here at The Blue Hour.

Exam Table Paper is here at The Commonline Journal

Ten Years Later, Allyson Stop It and And Yet are here at Dead Snakes.

It feels good to get these guys out there. Like I’m folding up the fear and anxiety into little origami sailboats and setting them adrift into the world. I feel better without them. Lighter. I was writing in my journal the other day about February feeling like the first “normal-ish” month I’ve had since diagnosis. Not like normal-normal, because I still don’t get through a day without thinking about it but normal enough, I guess. Cancer isn’t my first though out of bed and it isn’t my last at the end of the day. It usually shows up somewhere in the middle. And I’ve had more good days than bad (by a lot). More good days than sad days. More good days then I Hate The Universe Why Is This My Life What Did I Ever Do To You days. And I’m working hard on not kicking myself when I do throw little tiny pity parties. It happens. *Toots Party Horn*

And finally, I have a trip coming up.

It will involve lots of these:

germanbeer-banner2

That’s all I’m saying.**

But before I go I just wanted to mention Zoe Keating. I’ve mentioned Zoe on here before telling you how you should really go buy her album for six little dollars on her website. It’s worth about ten times that in my opinion. Last May, Zoe’s husband was diagnosed with cancer. Pretty much everywhere – brain, lungs, bones, liver. After a brave fight, he passed away at home on February 19th.

Zoe is a working artist that I have the utmost respect for. I’ve never met her. I just think she puts something beautiful into the world. And right now, she’s lost the most beautiful thing she had. As a stranger on the internet I can’t really do much except for share her music and encourage you, my friends, to listen.

This is Escape Artist. I would consider it a feat of incredible emotional strength if you could listen all the way through and not be moved. Also, that means you’re probably a robot. Good luck with that.

You can download her album here. $6.00 for beautiful art.

In the meantime, make something beautiful for yourself. And be nice to each other

Peace, Love and Starbursts,

Ally

*For those of you curious, Niflheim is a cold mythological place in Nordic stories. It’s also called New York City.

**No lectures allowed on alcohol and recurrence rates. Trust me I read all the literature. Life requires a little risk. It’s called LIVING.

I run, therefore I am

2 Feb

I started running.

Three times a week. Three miles. Thirty minutes.

It’s been about a month and while I’ve definitely hit a wall (figuratively though literally wouldn’t be a shock either) I’m still out there for a half hour in the freezing cold for three (long sometimes very long) miles.

I’ve managed to slip on the ice at least 4 times, possibly causing this nagging shoulder pain I’ve had. I’m tripped on the sidewalk at least twice. I’ve been sprayed with salt from a street salting truck and I’ve been honked at by at least one bus for taking too long to get up the hill by the bus stop.

But I’m still running.

Regular exercise and a healthy body weight will reduce my chance of a cancer recurrence. So yes, this is doctor ordered but behind that it’s something that I used to do that I miss doing.

I used to run with my dad when I was a kid and into my teenage years. He taught me to push harder going uphill, to relax and lengthen your stride going down. He taught me how to pay attention to my breathing so I don’t get a stitch. We would go after I was done with school and he was home from work. We’d go on weekends. We didn’t talk much. We just ran together. Even when we got to the driveway, breathless, we would just exchange a look and he’d say “You okay?” and I would nod, leaning over to stretch and catch my breath. That was the bulk of the talking.

You okay?

Yes.

And it was more than enough. In fact, whether it was around the neighborhood or a 5K, running with my dad is one of my favorite memories of growing up.

That was when exercising was fun. It was something we did together.

Now? Well, it’s a lot harder as an adult. But I still follow his rules. Long strides down the hill. Watch your breath. No quitting going uphill.

But I never joined a gym because I was self-conscious. Even at my thinnest I never felt thin enough. Ever.

I think that sucks. And I know I’m not the only one.

So imagine my delight when I saw this video, made by SportEngland a UK government agency as part of its This Girl Can campaign. I think it hits the spot.

Now they just need to make one for all the guys out there that need a little boost, too.

And Yet….

21 Jan

Over the last seven months I’ve written a lot of poems about cancer and all that sad sack stuff. I’m not going to post them all here. I plan on sending them out and/or hopefully putting together a new poetry book.

But this one is for Jay. Because everyone should be as lucky to have a love like this.

And Yet

there are still moments like this
where I am utterly still
and I can feel my hands moving in sync
with my mind
the way they were supposed to move.
Together.
Not like lighting followed by thunder.
Not separate.
Not like double vision,
a drunk missing the keyhole
the way I feel like my body
is no longer mine
but instead
the enemy
but not today
as I lift
the ice cream cone
you bought me
to my lips
and all of Manhattan
raises in one voice to
sing your praise, my love.

Welcome to Cancerland

20 Jan

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Love takes care of Love. Hate just burns you.

-Ryan Adams.

Hi kids

It’s been awhile since I’ve posted anything here and it’s with good reason. I’m not going to apologize because I hate when people do that on blogs. As if everyone was just sitting around wondering where the next post was. What happened? Where did she go?

Please. You all have lives, thank god.

Anyway…..now that I’m out of the proverbial closet I can share with you what’s been happening. I won’t go into detail about why I was in the closet because that is the nature of the closet, n’cest pas?

There’s pretty much no easy way to break this so I’m just going to say it.

On June 10th 2014, two days before my 10th wedding anniversary I was diagnosed with invasive lobular carcinoma or what the rest of us call breast cancer.

Without getting into too much detail, it was caught early and I’m gonna live. Between then and now I had three surgeries and 7 weeks of radiation. Going forward, I’m on hormone medication and injections.

I didn’t have chemo. For awhile it looked like I would and that sucked.

I know that millions of people go through chemo every year and they’re all really brave and amazing – hell both my parents have done it – but I still was dreading it. And I was dreading it because I knew deep down inside that it wasn’t going to help me because of the type of breast cancer. I’m a librarian. If you think I didn’t read everything I could on lobular carncinoma on all the medical databases we have you’re insane. Did I understand it all? No.

But I understood enough to learn that for me chemotherapy wouldn’t really make much of a difference. I went to a few doctors, managed to get my pathology in front of a tumor board (I know, FANCY!) and majority ruled for no chemo. So all that time I spent trying to practice my Amanda Palmer eyebrows for when chemo made them fall out was wasted.

This was the eyebrow plan

which is probably good cause mine looked more like this:

This was the eyebrow reality

The no chemo thing in itself was sort of weird and a little scary. I have cancer and I’m not getting chemo. Inside there is this little knee jerk reaction that says only a crazy person gets cancer and doesn’t get chemo. But when I pushed aside the fear, which I had to do, I found the answer: Chemo will do more harm for me than good. So I skipped right to radiation and hormone therapy.

Radiation went from October 1st to November 19th.

For those of you who were curious, especially you Jennifer Carlini who asked, radiation was what i was talking about on facebook with the “Week 1/2/3/4/5/6/ of 7 done #SuperheroTraining” comments.

I got zapped five days a week for seven weeks. I figure I’m officially She-Hulk. (ALLY SMASH!!!) And since it’s been an absolute crap time I am proud to say that during that I still got up and wrote every morning at 5 am and I still walked 5 miles to the hospital for treatment. Ain’t nothing gonna break my stride.

After that I started hormone therapy. Those are drugs and injections that I’ll be taking, oh….. for like 10 years. Bring on the menopause at 37. I have basically no estrogen in my body. I didn’t think I would notice it being gone.

I was wrong.

Hot flashes, thy name is Ally. (Sexy, I know.)

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So that’s where we’re at.

Which begs the next question why am I putting this on a blog, on the internet for the world to see?

Easy. I’m doing this for a few people.

The first person if for Me. I’m doing this because I have to. Because as a writer, I have to. Because I can’t shut this part of my life off. Because I also can’t let this part of my life become everything. And if I write about it, I win. I tame the beast.

And because writing is the lens through which I understand my existence. Without it it’s all just dark and scary and opaque. This allows for focus. Even if I’m talking about something that scares the shit out of me.

And the second person I’m writing to are My Friends.

All of you. And to you, I say this:

To all my girlfriends out there – get your mammos.

To all my guy-friends – make sure your ladies get their mammos.

Okay?

Are we clear?

I know this whole early detection thing is a hot button issue. There are people how go on television and tell you that as long as you catch it early you’re guaranteed to be fine. Let me tell you, that ain’t true. 40,000 people will die of breast cancer this year. I know there is no guarantee. Early detection doesn’t ALWAYS save lives. But sometimes it does. Lobular cancer doesn’t form lumps. It spreads out all spiderweb-y. I didn’t feel anything. Neither did my surgeon by the time I got to her. The only reason I found anything was because my really really great gynecologist told me that due to all the cancer in my family that I should start getting mammos early. So I did. And it came back unclear. Too dense, they said. So they did a ultrasound.

And there it was. That little spot. Swirling inside me like the hurricane on Jupiter.

That mammo made all the difference. Most lobular isn’t caught at stage 1. Mine was. So while early detection might not be a cure-all, it is what we have and we have to take advantage of that. So we get screened.

And if we find something our treatment options are Cut, Burn and Poison. Not the best sounding options but it’s what we’ve got. And until we stop letting politicians and money and religious institutions dictate if it’s okay to try to save lives with new methods, cut burn and poison is what we do.

But what we don’t do is lose our sense of humor.

Or our hope.

And that brings us to the third person – YOU

I’m writing this for YOU.

Yes, YOU. You, that person reading this who doesn’t know me (or maybe does) and was just diagnosed. I’m talking to you, now. No one else. Just you.

Listen up.

One of the first things I did when my doctor called and said, it’s cancer, was go searching for other people in their 30’s who were standing where I was. That might sound messed up but I mean it. It’s different to be young and diagnosed. It just is. Anyway I found them, over and over again. They made me feel less alone and scared. I’m paying it back to the next person who joins the club no one ever wanted to be a part of.

And to, YOU,  person who was just diagnosed and reading this, I say this:

You’re going to be okay. You’re going to get used to this. You will develop a new normal and once you get your bearings, it will be okay. I’m six months in. That’s not very long in normal people time. But in cancer time (yes that’s a real thing) I feel like it was ages ago that I was diagnosed. Or maybe minutes. It’s very shifty. Six months in, I’m still not always sure where my new normal is. Sometimes I see it, like a light you have to look away from to actually view. Something peripheral. Cancer is a thing I carry. And with anything you carry you need to shift it around until you find a place where you don’t notice it as much. A place where the load isn’t burdensome. That’s the new normal that you’ll read about. It takes time.

Some days I have it. Some days I don’t. I try not to be too hard on myself on the days that I don’t and on the days that I do, I’m proud. Here I am, living my life just like everyone else! Go me!

You’ll do it too.

Also, you have to work to not lose perspective. I’m going to share with you the words of my friend Don, who is far wiser than I could ever hope to be. They gave me a lot of comfort. Maybe they’ll do the same for you:

“Funny thing, one thing nobody ever said to me – in this time when you will be so inward looking, so concerned with self, make sure you look about you as you go for regular treatments.

The staff, the fellow patients – there is so much there to take in, so much about who we are as humans, how we handle things. How we share, especially casually, in greeting, even silently, in the nod of a head or a smile. 

Fuck the world, fuck opinions, fuck all the bullshit – we’re simply people and we do what we
do, each and every day, world or no, opinions or no, despite the bullshit.
People are capable of a bigger, different kind of sharing, a different kind of love. I’ve believed
something like that, in a number of different ways, throughout my life. But this experience
brought it all home for me again in unexpected ways. Yeah, with lots of sadness, but something
like joy, too…..the only way is day-to-day, trying within that frame to keep your head from going too far up your ass and, when it does, shake it all off and get back up the next day and get right back in there.”

He’s very bright, isn’t he? And he’s right. This experience happens to millions of people. You are not alone even when you feel that way. Try not to get too lost inside your own shit that you can’t see how NOT alone you are. And it’s not easy. It’s easy to feel isolated. But isolation is a cage. You HAVE to bend the bars.

This world is beautiful as fuck all. I will always believe that. Even when I’m scared. I still know that the chance that I exist AT ALL is so incredible slim. How goddamn lucky we all are. I mean, my god, look around. It’s just so beautiful. You can’t get mired down in fear. Especially now.

And finally, YOU who just got diagnosed,  I want you to know that I love you. I truly do. And I’m here if you need me. My email is in the About page. Don’t hesitate to reach out.

Prior to this, I quasi-confessed on rock star’s blog about having cancer and then I panicked and took it back. But before I took it back, someone on the other side of the world heard me.

Her name was Karan. And this is what she said:

I hear you. I am on the other side of the globe, and I hear you.

I have recently read a book about near death experiences, and one of the most important things those who were resuscitated had to say, is:
We are not alone. Never.

We may not feel it always while being embodied on this material plane. Maybe it is our task here to learn it. To learn to believe it. To learn to trust each other.

And you have just taken a big leap of faith, a leap of trust. Courage is not the absence of fear, but acting in spite of it.
You have every reason to be proud of your courage, your strength, and also of finally being willing to share your weakness, too. We all have both weaknesses and strength. And we are not forced to carry our burdens all alone.

You are the one to bear the physical aspects of your cancer, but the mental and emotional burdens can be shared. You have just taken the first steps towards this, and I applaud you for it!

May you find healing, for body and soul, and people who are at your side, both online and offline (over a cup of tea or so). Wish I could make you one! But what I can do is to send you my heartfelt best wishes and thoughts of encouragement!

I read that and put my head down on my desk and had myself a nice hearty cry. I have never loved a stranger as much as I did at this moment. She heard me. All the way on the other side of the globe, she heard me.

That is power and love and compassion and empathy all tied into one big human knot.

I was so thankful to Karan for being there in my terrified little moment. So I’m paying it forward.

To YOU, know that I hear you. Okay? I hear you.

Again, email’s in the About page.

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A lot of people consider cancer, especially breast cancer, to be a journey. This is a really popular notion. I don’t know if it applies to all cancers or not but breast cancer especially is often thought of as a Journey. (I’ve got LOADS more to say about this but this post is too long as it is so that’s for another time.)

I don’t feel this way. This is not a Journey. This is not a rite of passage.

This is a disease. A disease that I will work to obliterate and destroy but a disease none the less.

A journey will be the backpacking trip I’ll take through Peru when this is all said and done. That is a journey.

Very different things. But there is so much for me to learn now. About myself. About my marriage. About my family. My friends. This world. The universe.

Speaking of the universe – The morning after the doctor called I woke up that morning and had a full-fledged panic attack. My husband held me while I cried in bed, asking the universe “Why me?”

Turns out the universe had and answer to that question.

The universe said, “Why not?”

In the beginning I was angry.

Anger can be good. Anger can sharpen your focus to a needle-point. Anger gives you energy – gets you to pay attention and take notes, gets you to fight with insurance companies when they refuse approvals. That is the benefit of anger.

Anger = Action

But anger has to be temporary. Otherwise it becomes a poison. It becomes fear.

Cancer is me. It’s my body attacking itself which is a horrible notion. That first morning, all I wanted was to claw my way out of this body – out of his sick shell that I felt trapped in, like I was drowning in myself.

That was fear overtaking me. Fear is anger’s kissing cousin.

And if anger doesn’t become fear – it becomes rage. And rage is dangerous.

Rage will eat you up.

Hope, on the other hand, does the opposite. Hope can feed you. Hope can save you.

Hope has a kissing cousin too.

It’s called laughter.

italy

This guy makes me laugh.

So this is where I am. This is what’s happening.  And as time goes on, and I learn how to carry this so I don’t even feel it (and I WILL learn to do that), I’m going to be a different person. I’m looking forward to meeting that Ally. I wish I could now. I wish she could come here right now, from five years in the future, and tell me it’s going to be okay. That it’s all going to work out in the end. I want very badly for that to happen but it won’t.

In the mean time, life goes on. We all go on.

It is a brand new year. And in this new year I have a wish for all of us: May we all learn to carry our things a little more comfortably.

I love you all. Take care of each other.

Hugs and Kisses and Love and Laughter and a million starbursts,

Ally

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