Month: April 2015

The Power of Me Too.

A year ago, I could not have imagined the good that breast cancer would bring into my life.  At that time, it ALL felt bad.  I didn’t know how I would get through the coming months, and I couldn’t imagine the big things God had in store for me — the doors He was opening.

Almost exactly a year later, I found myself here…

20150417_200240…five minutes from NYC.  At a blog conference.  On someone else’s dime.  Whaaaaaat?

When I got the official invite from Janssen a couple of months ago, I thought that it might be some sort of scam.  What could they want from me?  But as it turns out, it wasn’t a joke.  This conference was the brainchild of some very passionate people.

HealtheVoicesLogo

I have to say that I was pretty nervous that first night as I walked into a cocktail reception overlooking Manhattan by myself.  Afterall, I’ve spent the better part of the last five years wiping butts and trying to get people to go to sleep — both at home and at work as a night nurse — and my blog is not professional.  But as it turns out, one coffee + three cocktails is the recipe to loosen me up.  It’s also the recipe to make me pee.

The welcome dinner setup kind of felt like the high school cafeteria all over again — but in a much more chronically ill, hilariously somber sort of way.  See, once I sat down in my assigned seat, I noticed that everyone at my table was a breast cancer blogger.  I looked around, and it was clear.  There was the diabetes table, the rheumatoid arthritis table, the HIV table, the Crohn’s/colitis table and so on.  People were swapping surgical stories, comparing psoriasis patches, and talking common medications.  As if on cue, my table compared ports.

We were grouped by disease, and I don’t know why but I LOVED IT.  It was the funniest possible way to start this conference.  And I’m assuming my table was part of the cooler crowd, though, because BOOBS, you know?

"On Wednesdays, we wear pink!"  Except we're really effing OVER pink...
“On Wednesdays, we wear pink!” Except we’re really effing OVER pink…

I mean, it was also really nice.  My breast cancer girls are where it’s at, and it’s easier to get comfortable with people you don’t know if you have something in common like, uhh, cancer.  But I also felt the weight of being grouped together like this.

In an introduction speech, Ann Silberman’s blog Breast Cancer? But Doctor….I hate pink! was mentioned for its wit.  The speaker read aloud Ann’s tagline, “Terminal cancer can be funny. Just not for very long,” and it was met with an immediate laugh that swiftly turned into a collective “awwww.”  You know the sound.

And when I first spoke with Jen from Booby and the Beast, she asked if I had been stage four from the beginning.

“Oh, no!” I refuted.  “Me?  No.  No, I was only a stage one,” I said a little too firmly and with one too many “no’s.”

A few minutes later, I learned that she was stage four from the beginning.  (She looked so healthy!  Looks can be deceiving — which I learned again and again that weekend — and also, I can be an idiot.)  And her beginning looked a lot like my beginning.  Diagnosed at 32 while nursing a baby with no family history to speak of.  Except I was diagnosed at stage one and she at a stage four.

I laid in bed that night and couldn’t stop thinking about her, about Ann and Vickie and Kathy — who are also “terminal” (Read this to see why that might not be the best terminology.)  I was the only non-metser there.  I couldn’t reconcile my own story against Jen’s especially.  I felt guilty.  I felt lucky.  I felt confused.

img_gs113719861_04182015_113719861From left to right: Kathy-Ellen Kups, RN, Life with Breast Cancer; Jen Campisano, Booby and the Beast; Vickie Young Wen, I Want More Than a Pink Ribbon; Ann Silberman, Breast Cancer? But Doctor…I Hate Pink; and me.

I saw her the next day.

“Hey, I was thinking about you a lot last night.”  <—because I’m a weirdo.

“Yeah, me too.  I read some of your blog.  Your last one was really good.”

“Thanks!  I read some of yours too.  It just seems so… I can’t understand…  I feel bad,” I trail off.

“Me too,” she said softly.  “I know that I’m basically your worst nightmare.”

I don’t remember what I said after that, but it wasn’t much because we had places to go.

My worst nightmare though?  No.  But YES!  But nooooooooooo.  Well, yesssss, kind of.  But not you personally, no.  Gah.

The event made me confront some things that I didn’t really want to confront, and to be honest — and to my surprise — it was good for me (after a little processing of my feelings because I definitely did think, at one point, that I had found a new cancerous lump in my armpit that weekend).

The point of this conference, though, was not just to let us hob knob and such.  It was to empower online health advocates.  (Did you know that I was a health advocate?  I did not.)  They wanted to give us some tools to help us make a bigger difference with our crafts.  We listened to brilliant speeches by inspiring people, like Dr. Zubin Damania “ZDoggMD” (who is also hilarious).  We attended sessions on bloggy stuff and had discussions about the legal side of things and social media analytics and measurement.  We got to talk shop with other bloggers.

While I learned a lot of really cool things, the biggest takeaway for me was something we talked about in terms of the power of “me too.”  It was something that was almost palpable at the conference.  It’s something we all long for, and it’s what a lot of really great friendships are built on.  It’s a sense of validation.

Just yesterday at the park, I saw a plaque on a picnic table that I read as ‘John Stamos’ at first glance.  It made me laugh and start talking to my friend about my excitement over ‘Fuller House’ (YOU GUYS!).  Then our other friend showed up and said the exact. same. things. based on the same misreading of the plaque.

“ME TOO!”  Hahaha.  “I’m pretty sure that’s why we’re friends!”

Just think about how excited you get when you find out someone loves Harry Potter as much as you do.  Or had the same pink and purple popple in 1989.  Or, like, has a scar in the same place on their knee as you.  We love even the smallest of commonalities.  Instant bonds are formed among parents of small children, Hanson fans (ahem), runners, motorcycle riders, vegans.

You see someone on the road in the same car as you.  Instant connection.

Someone else has their quilts on a rotation schedule so each blanket has its time to shine and none of them gets their feelings hurt?  YES!  It feels so good to your soul!

When I was in a room with dozens of other people who UNDERSTOOD the weight and effects of illness (cancer or not), it felt great, and more importantly, I realized why my blog is important.

Up until that point, I didn’t quite understand why I was there.  Some of these people were doing really great things with their websites, and here I am over here just trying to make myself laugh.  To be honest, I do do (doo doo!) this mostly for selfish reasons.

I started this blog because I couldn’t find one that didn’t scare me in the beginning.  I started it because I was tired of repeating myself.  I couldn’t keep up with the constant flood of texts and calls from my friends and family.  So damnit, here it is.  Here’s how I’m doing!  (And also, you know, thanks for caring.)  I started it to stop my head from spinning — to nail some of my thoughts down.  It became part of my therapy.

What I realized at the conference is that storytelling is important too.  People (who are not my dad and my best friend) are now coming here to find something — the me too.

Just the other day, I got this comment:

“Thank you for your blog and honesty. I am 6 out of 16 treatments through this mess (surgery and radiation to follow) and really needed to find a blog written by somebody not stage IV and a mother in her 30s. I read all of your posts either laughing, crying, nodding along or all three combined. I’m glad to read you’re doing well.”

That’s a “me too” that goes a little deeper than a shared love of Scattergories.  And not just on her part.  Every time I get a similar comment or email, I feel connected.  I feel stronger.  I feel less alone.  It makes me realize that what I’m doing by telling my story is important.  It’s important for her and for me.  So I guess that’s what I’m doing here — calling out into the internet for my people (re: cancer allies, people who like to laugh, and anyone who just knows that I’m generally awesome) to join me at this lunch table…err, blog.

 

Disclosure: Janssen paid for my travel expenses for the summit. All thoughts and opinions expressed here are, as always, my own.

Dear newly diagnosed breast cancer patient:

I know you can hardly believe that I’m talking to you — that YOU are a cancer patient.  Unbelievable, I know.  It took me a long time, too, to truly identify myself as a cancer patient (because these things happen to someone else, right?), but as it turns out, in the future when someone asks you if you have cancer anymore, you will be reluctant to say no.  Go figure.

One year ago today, I, too, was diagnosed with breast cancer, and on this first anniversary of my diagnosis — or on my first cancerversary as they ridiculously say in the cancer world — I wanted to welcome you to the club.  It’s a club that no one wants to join, and I have to be honest.  Initiation sucks.  But membership lasts a lifetime.  (I didn’t make that up.  It’s like a motto or something.  This club is legit and stuff.)

Since you are now a part of my posse (I’ll teach you the secret handshake and give you your code name later, but you should know now that chest bumps are strictly prohibited.), I will impart some of my infinite breast cancer wisdom to you.

…uh, just kidding.  I don’t have this thing figured out either, but I do want to pass on a few things I learned along the way to maybe make this easier for you.

First, though, I want to say that I am sorry this is happening to you.  When I think back exactly one year, what I remember is fear.  Unadulterated panic.  A total loss of control.  I know it feels like someone is holding a gun to your head.  For days, weeks, months on end.  You are an endless supply of adrenaline and grief.  If you could somehow separate yourself from this body that so betrayed you, you would, but instead, you feel trapped inside of it.

It’s painful for me to remember how that felt, and I want you to know that you won’t feel like this forever.  The emotions dull with time and, for me, with medicine.  I’m not going to push drugs on you (because you are probably already sick of having to say no to drugs.  I’ve never had more marijuana offers in all my life because people either think it’s hilarious or that cannabis will truly cure your cancer.  Ugh, neither.)  What I will say is that there is no shame in anti-anxiety medication or antidepressants.  This shit is scary.  Uncertainty is daunting.  And meds don’t have to be forever.

I also want to save you some trouble and tell you that this isn’t your fault.  Intellectually, you know this, but you can’t figure out why this is happening.  In my search for THE WHY, my favorite doctor said, “I’ve asked myself that question about a lot of my patients, especially younger ones like you, and what I’ve come to is that shit happens.”

Shit happens.  It sucks to be on the shit end of this stick, but sometimes, shit happens.  This is one steaming hot, high pile of shit, but it’s definitely not your fault.

Okay, as my first real piece of advice, I want to urge you to stay offline for a while (except for my blog, duh) because I’ve often found it to induce more fear than give reassurance.  Bad outcomes are highlighted, and in much greater detail, online because who continues to blog or visit breast cancer message boards with great outcomes?  The people with the stories we long to hear are busy living their lives.  Women who have gone on to live normal, healthy, long lives aren’t often visiting or running breast cancer sites because breast cancer is not controlling their lives anymore.

But women do go on to live wonderful, long, full lives.

And because we’ve all seen how chemo goes down in the movies, I also know that you’re worried about the treatments ahead.  To be honest, they weren’t as bad as I had imagined.  Not a walk in the park but totally doable.  And just so you know, I didn’t puke once and my eyelashes have already regained their former glory.  Hallelujah and amen.

I have to warn you, though,that people will start talking to you about your attitude a lot, which is weird because when they had the flu last month, never once did you tell them to “keep a positive attitude” or to “look on the bright side” or to “stay strong.”  Instead you let them be sick, called to check on them, and brought soup, 7 Up, and a magazine.

The flu and cancer are definitely not the same — duh —  but my point is that it’s okay to wallow sometimes.  It’s okay to be scared, sad, angry, confused, and generally not so sunny.  You need to feel these things in order to move through this.  Besides, it’s humanly impossible to feel 100% positive while going through an early, chemotherapy induced menopause in a month flat.  (Those not in the club don’t know nothin’ about that.)

As easy as it would make things, attitude does not cure cancer.  Otherwise, we’d all be the happiest damn cancer patients you’ve ever seen.  We would rival Walmart greeters and kindergarten teachers.  People would want to get cancer to see what all the happiness was about and because a good joke is as easy a cure as any.  In my dreams, my friends, and probably yours too.

In real life, don’t let the pressure of being a “good” cancer patient drown you.

What I did learn about attitude is that while it didn’t change the cancer inside of me, it changed my cancer experience.  So my most important piece of advice for you is to BE OPEN.  Be open to making this experience as good as you can.  It’s happening anyway so why not?

Be open to finding the humor. (ALWAYS look for the humor in the cancer world.  You need a laugh, girl, and maybe, like, a margarita and a massage from Ryan Gosling.)  Be open to laughing when your baby tugs at your hair while you feed her a bottle and repeatedly ends up with tiny, adorable fistfuls of it.  (Oh, just me?)  Find the humor in that, lint roll your head again…and then cry in your pillow later that night because, like I said, that’s okay too.

Choose to change the script from “Why me?” to “Could this be any more ridiculous?”  So yes, you might be flashing your ninth stranger of the day, but in that case, doesn’t it kind of feel like Mardi Gras?  Instead of collecting beads, you’re collecting hospital bracelets.

Okay, that’s a stretch, but trust me, make that stretch.  You will end up laughing at things you would have otherwise cried through, and when you look back, you will remember these good times too.  You will remember laughing when the plastic surgeon insinuates that your best girlfriend is your lesbian lover.  You will remember laughing with your husband on the first day of chemo while taking bets on what mutant powers you’re about to get.  You will remember laughing when the hospital sends you a friendly reminder to schedule a mammogram (It’s been a year, afterall.) and you seriously consider making an appointment just so you can open your gown, hand them your prosthetics, and watch their faces.

There’s plenty to cry about too — you already know this — and you will remember the tears too.  In those broken moments, you will come to know yourself though.  Just don’t get stuck there.  Be open to what’s around you.  The hilarity as well as the tragedy.  The blessings on top of your bad luck.

Be open to your friends and family.  Letting people help me was one of the harder things about cancer, and I wish I would have done a better job at it.  You need the help, and your friends and family really want to help.  It gives them power in an otherwise helpless situation, and it gives them a way to show you they love you without really having to say it .  If they are there to help, let them. (But go ahead and buy new underwear now because there will be lots of hands in your laundry and you are more fabulous than your current underwear suggests. I know it.)

I don’t know what the future holds — for me or for you — and that’s the hardest part.  I do know that I can’t believe it has already been a year for me.  I can honestly say that, although that was one mother effer of a year, it flew by.  When I think about you, the newly diagnosed, what I really want to do is give you a hug and tell you that you can do this.  It’s not bigger than you.  No matter what happens.

A six month post-chemo checkup.

The other night, I got babysitters so I could go to bingo with my bffs.  (Obviously, we are suuuuper cool and also probably mentally approaching elderly.)  My babysitters are also our friends so they spent the night.  As we drug a mattress upstairs for the girls to sleep on in the living room, all of  sudden, I felt like Superwoman.  I mean, this thing used to be HEAVY.  Really heavy.  Now, I was practically throwing javelin with it.

“This is a lot easier going upstairs than it was taking it downstairs last time, isn’t it Brooke?”

::Blank stare from 13 year old babysitter::

“I mean, it feels a lot lighter, doesn’t it?”

“Oh, uh yeah, I guess so.”

And we plopped the thing in front of the TV.  Me, LIKE A BOSS.

“Unless,” I say contemplating how a mattress could lose weight (and if it could teach me its ways because Tamoxifen is not having the slimming Giuliana Rancic effect on me, bless her), “it really wasn’t lighter to you.  Was it just me?  It felt a lot heavier last time, but I was also pretty chemo’d last time we carried this thing.”

“Yeah,” she concedes, “you were.”

So I’m not Superwoman afterall.  I’m just, like, not half dead from chemo anymore.

Six months ago, moving that mattress took everything I had in me.  Thursday night, I pretty much dougied up the stairs with it.

My babysitter and me (and the rest of our posse) carrying the mattress upstairs.
My babysitter and me (and the rest of our posse) carrying the mattress upstairs.

I have not had a dose of chemo (save Herceptin which isn’t technically chemotherapy anyway) for just over six months and laying in bed that night, I started taking inventory.

My eyelashes and eyebrows have been back for quite some time, but my hair is taking waaaaay longer than I realized it would.  And I’m getting more impatient by the day.  Hair envy is real.  I spent a solid half of Easter Sunday admiring my teenage nieces’ golden hair.

This is what my stupid hair (and beautiful daughters) looked like on Easter.
This is what my stupid hair (and beautiful daughters) looked like on Easter.

While my nails never fell off, they did go to crap.  And by crap, I mean that they were slightly discolored, got super brittle, and were constantly peeling.  They, too, are getting stronger, and I only have slight peeling issues.  My skin is still dry but not chemo dry.  I’m no longer short of breath, but my blood counts aren’t quite back to my normal yet.  Hot flashes still happen but not with the same frequency and, more importantly, not with the same intensity.  My taste buds have long been back to normal, and while some of the “fog” has lifted, chemobrain persists.

What I am really left with and what I notice the most is the tiredness.  It’s not the same crippling exhaustion that I once felt, but I am not back to my former regular sleep-deprived glory.  It’s a tiredness that sometimes makes me wonder if it’s a lingering effect of the chemo or if it’s because I have two small children (and I think it’s a child’s greatest joy to rob their parents of sleep and sanity), but I know it’s from the chemo.  It feels chemo-y, you know?

I used to be a morning person.  Now my children practically have to drag me out of bed.  (“Mommy, can we have breakfast?”  “Mommy, Alice is playing in the toilet!”  Blah, blah, blah.)  Eight hours just doesn’t cut it.  For a while after treatment, I took naps.  Lots of naps.  Almost everyday, I would take a nap with the girls.  The need for naps lessened as the need to vacuum rose so I’ve almost all but given them up.  Hopefully, in time, I won’t feel like I need so much sleep.

I’ve also been able to get off of my anti-anxiety medication.  I was mainly using it to help me sleep as that’s often when panic sets in, and while I still have some, I have much less anxiety at the moment.  To keep it real, though, I am still on an anti-depressant, and I think I will be for a while.  I can still feel the depression trying to creep in, and while the anxiety is less of a problem these days, straight-up depression is probably more of a problem now than it was six months ago.

In the thick of cancer and its treatment, I had this really beautiful sense of clarity.  I knew exactly what did and didn’t matter.  I knew how I was going to live my life after cancer.  I knew where my time and my heart were going to go.  The problem is that the clarity fades.  It has to.  You just cannot live life in such a heightened, raw state.

And truthfully, it’s really hard to reconcile flawless living with real life.

This has been hard for me.  There are so many things that I want to do, but there are also so many things that I HAVE to do — like the laundry and the dishes and paying the bills.  You know.  But I am trying to find that balance, and I am trying to remind myself that I have time (fingers crossed).

So that’s what six months out from chemo looks like.  A little bit of a mess still, but hey, I can carry a mattress, my nails look better, and I can taste stuff again!

Also, if you were wondering, this is probably a more accurate rendering of my dance moves.  Josh’s too.

Dance