Welcome to Cancerland

20 Jan

388427_2585773925859_2004766261_n

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.)

*************************************************************************************************************

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.

***************************************************************************************************************************

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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29 Responses to “Welcome to Cancerland”

  1. Mary Waibel January 20, 2015 at 6:33 pm #

    Thank you for sharing this with us, Ally. I’m so glad to hear that things are going well for you, and think it’s wonderful that you are working to help others facing the same fears as you did/do.

    Sending you lots of love and continued healing thoughts!!

    • ally malinenko January 20, 2015 at 6:36 pm #

      Thanks Mary. Working with Bookfish to get This Is Sarah published was one of the things I clung to in last year’s storm. The only thing about 2014 that I liked!

  2. patriciaann47 January 20, 2015 at 6:35 pm #

    Wonderful,truthful,scary,honest and loving.

    • ally malinenko January 20, 2015 at 6:40 pm #

      I have really great parents that taught me all about being truthful, honest and loving.

  3. Anita January 20, 2015 at 6:54 pm #

    Wow. Ally, as I’m sitting here weeping after reading your note. I am truly amazed by your strength and courage. Thank you for your candidness. You are amazing.

    • ally malinenko January 21, 2015 at 4:59 pm #

      Thanks for reading Anita. There is no sharing without people willing to listen.

  4. Erin Rhew Books January 20, 2015 at 6:54 pm #

    Thank you for your honesty, Ally! We are all rooting for you! Can’t wait to meet future Ally as well! Big hugs!

    • ally malinenko January 20, 2015 at 9:25 pm #

      Thanks Erin! You guys at Bookfish were such a rock when I was going through all of this. I love you all!

  5. J.J. Campbell January 20, 2015 at 9:17 pm #

    thanks for posting this Ally. and thanks for the honesty. here’s hoping hope brings you want you need. be well. and keep writing.

  6. Melinda Hartman January 21, 2015 at 3:22 pm #

    Great post! I am closer to the other side of it than I am to the beginning, but I don’t think that I’ll ever actually be past having breast cancer. I can see it every time I dare to look in the mirror without a shirt on (which isn’t very often). I think about it every time I see the quilt made for me while I was going through treatment. I think about it when I go to sleep. I think about it when I wake up. Every single thing that happens to me, every single thing that I feel, I wonder if it’s an after effect of the chemo, or the radiation, or the surgeries.

    But I’m glad to be where I am. I’m not glad for what I went through. I don’t know if I would choose to go through it again, should the cancer come back. But here I am. In all my glory. Figuratively holding your hand, and raising it up high, and yelling “Yay us!”

    • ally malinenko January 21, 2015 at 3:47 pm #

      Thanks for reading and sharing Melinda. Sometimes it seems like there is so much advocacy out there and so much “warrior” status that people forget how painful the whole thing is. Like you said, you’ll never get past it. I”m so glad to hear you’re doing well and “YAY US!”

  7. Tammy Mckee January 21, 2015 at 4:49 pm #

    Ally, I am so glad that you’re going to be okay, and I know you will be. I have faith. I also have to say that if cancer or any awful disease ever shows its face in my life, I hope I have just an ounce of your courage. I’ll need to email you just so you can tell me how much you hate my whatever’s guts. You always had your sense of humor and I just love that about you.

    • ally malinenko January 21, 2015 at 4:55 pm #

      Thanks Tammy! And i hope to god I never have to but if you ever need the roles to be reversed I will hate all over your badness. And thank you for giving me This Is Sarah – the only bright spot in a hard hard year.

  8. Amanda Dick January 21, 2015 at 11:50 pm #

    Thanks so much for sharing this, Ally. My mother and grandmother fought (and won against) breast cancer, so it’s a very real part of our lives. I’m 43. I need to get a mammo – something I’ve been putting of due to the cost here (I’m in New Zealand). You’ve just given me the kick in the ass I needed – so thank you.

    On another note: you are incredible, and I say that honestly and openly. Thank you for sharing. Stay strong!

    • ally malinenko January 22, 2015 at 10:07 am #

      Amanda – thanks so much for reading. It means so much that people are out there listening. Congrats to both your mother and grandmother. That is wonderful news. As for you, yes, please go get your mammo. I found this: http://nzbcf.org.nz/BREASTCANCER/Mammograms.aspx

      It says that they are free every two years. And again, early detection doesn’t always save lives – except for when it does.
      Much love to you!

  9. RedSunshine January 23, 2015 at 5:09 pm #

    Ally – you’re a great writer, keep it at, it’ll be your sanity for sure. You’re doing great with it all, sister. Hang in there, keep the faith. Big fan!! xoxo _RedSunshine

    • ally malinenko January 23, 2015 at 5:20 pm #

      Hey RS! Thanks for taking the journey from YSC over here. I appreciate it. Writing has been (and always will be) my go to. You’re doing great too. Thanks for all the support.

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