Category: Uncategorized

34.

My birthday was two days ago, and I told my husband that all I wanted this year was to disappear.  Like, I really just wanted to go off the grid for a bit.  So he took the kids and gave me the afternoon (and the shirt I kept pointing out because he’s not an IDIOT.), and I found myself here, trying to reconnect with myself.

20151110_143027

20151110_144437

Life after cancer seems so loud.  So busy.  And very confusing.

And I feel like people think I should have my shit back together by now.

I don’t.

A few months ago, I was connected with someone that I went to high school with who was just diagnosed.  I reached out, letting her know that I’m here for her.  That I know.  Through her emails, I’ve had to relive those early days — the bewildering, all-encompassing fear and confusion.  Her panic, her despair are palpable through the screen (but maaaaaaybe I am also projecting a tad?), and I am often reduced to tears for her (for myself?), and to be honest, I haven’t been a very good friend / support to her.

But I find myself in this weird space where I have one foot out of the breast cancer world and one foot still in.  And I lose my balance easily.

Like with the entire last month.  Oh, October.  Pinktober wasn’t good for my heart (re: anxiety level), the big pink party that it was.  October also wasn’t a great month for some of my online friends / fellow bloggers healthwise.  Their breast cancers didn’t care that they were supposed to be PRETTY and CURABLE in October.  They just did their thing.  Which is continue to ruin and take lives.

It’s not good for me.  It’s not good for me to be constantly looking breast cancer and the damage it does right in the face.  I’m still too off-balance.  I fall too easily.

But someday — and I feel guilty that it’s not TODAY — I would love to advocate for metastatic breast cancer.  Because their voices die out.  And it could be me…or my daughter…someday.

On a lighter note, I was also thinking about how tired I am of seeing my pink wig hang in the back of my closet.  I pretty much never want to see it again.  You understand.  But it’s a perfectly fine pink wig, and it got my bald head through some tough (and cold) times…so for my birthday, I want to give it away to someone who needs it right now!  Soooo who wants it?  Anyone?

PinkWigCollage

In other hair news, I think I outgrew my grandpa in the last year.

October 2014 & October 2015
October 2014 & October 2015

Anyway, I got off track.  I’m not sure this post has a track though.

When I got home from my three hour long respite, a “cake party” and homemade cards awaited me.  So even in all my cancer-induced, teenage-like angst life IS pretty perfect.  And the universe or God or whatever made sure to drive that point home because that evening, Josh and I attended the wake of a 36 year-old coworker of his.  On my birthday.  Yeah, LIFE is good, and I couldn’t be more thankful for 34.

Dear Hanson, it’s me again.

**I’m taking a break from breast cancer today because it’s Pinktober…and I kind of want to hide in a cave until it’s over.**

You guys, if my relationship with Hanson was playing out on Tinder, I’m pretty sure they left-swiped me a while ago (probably based on a bald, boobless profile pic and this post or possibly this post).  I know this based on three facts.

1.  Taylor Hanson read my blog and didn’t feel the immediate need to tell me how hilarious / smart / bald / wonderful I am and then propose for me to bear his sixth child — to which, I would have had to politely decline based on my current (lack of a) hormonal situation.

2.  The last time I saw them — the last time they came to St. Louis — in May, they only announced the show hours before, barely giving me time to make it.  In fact, I missed the first song, sneaky brothers.  It went something like this.

Bff texts me: “Dude, Hanson is here tonight?!? wtf?”

Me: “Whaaaaaaaaaaaaat?  WHAT ARE YOU TALKING ABOUT RIGHT NOW?”

A quick check of Hanson’s twitter revealed that they were, indeed, opening for Ed Sheeran in AN HOUR AND A HALF.  Seven minutes and $193 later, I had sent my children off to Nana’s for the night with no pants on.  There was no time for pants.  As my husband did the drop-off, I tried to ready myself for the evening, but usually I have advance notice.  Usually I shave my legs and stuff.  You know, just in case.  No time for that either.

Anyway, we hustled to the venue (and by “hustle,” I mean I yelled at my husband to drive faster and to blow stop lights), parked illegally, and ran inside — where there was a problem with our tickets.  While waiting in the ticket-fixing line, I heard Hanson start playing so as politely as I could, I tapped on the lady’s shoulder in front of me.

“Hi, I was wondering if there is any way you’d let me go in front of you?  I’m only here to see the band that is playing right now…”

“Yeah, I’m just in this line to get my ticket fixed,” she inexplicably replied and turned back around.

Mmmkay.  Right.

So I missed the first song.  And I was pretty sure that Hanson was either testing my loyalty as a fan or trying to get through my hometown without me knowing.

PART_1431313054232_IMG_20150510_195329210

PART95143131340884195IMG952015051095194406283

PART_1431313368702_IMG_20150510_195402295

But now I know that they must have seen the crazy in my eyes because they announced tour dates for this fall.  And #3: No St. Louis show.

That is why, on Wednesday, I am going to Chicago.  They’re going to have to do better than avoidance to get rid of me.  An order of protection would probably do it.  Which will probably happen the minute they realize that it was me who threw her bra — boobs and all — onstage.

The time I cried over a stripper’s boobs.

Last night, Josh was invited to a bachelor party.  NBD.  Josh and I have been together for twelve years; I’ve happily kissed him goodbye to his fair share of bachelor parties.  But as I lay in bed last night in silence and darkness, trying to go to sleep, I turned into a person I never foresaw for myself.

“Josh, I know this isn’t fair,” I started.  “I know that I shouldn’t even say this, but I’m worried about you going to this bachelor party.”

He propped up on an elbow, and I could see his open eyes through the darkness.  “What do you mean?”

“Well, I’m afraid it’s going to end up at a…”  My voice broke.  “…at a strip club,” I cried.

Josh knew exactly what I meant.

Boobs.

“I just don’t know if I can handle it,” I confessed.

Actually, I know for sure that I couldn’t it.  Just after surgery, I was having a talk with one of my best girlfriends (whom I love so, so much and appreciate!) about my concerns regarding Josh and my newly mangled and debreasted body.  I’ve never doubted for a second that Josh would stand by me and love me all the same (even more really) and keep accepting me for who I am, but I felt sorry for him.

Let’s be honest — We’re all adults here.  At least, I hope so! — it wasn’t just me who lost a pair of boobs, it was my husband too.  I worried about how a man would feel going through the rest of his life without ever getting to touch another breast again.  Also, men are much more visual when it comes to sexytimes and stuff.  Plus, boobs are awesome.  We all know this.

When my 93 year-old patient found out this weekend that I was, indeed, breastless (It was a long, windy, dementia-filled road for that to come up in conversation.), he immediately voiced his concern for my husband.

“Nothing for him to touch?”

“Nope, I guess not,” I answered.

“How has he been with that?” he asked with genuine worry.

“He’s fine.  And besides, I’m alive,” I answered as gently as I could.

“But I mean….poor guy!”

“Yeah, well, I’m alive.”

So it’s fair to say that I’ve spend some time feeling a little sorry for Josh (but not too much time because there have been a lot of other worries on my plate over the last year and a half and, besides, what really is most important is that I’M ALIVE, dude!)

Anyway, I spilled all these fears to my friend just after surgery, and she was, naturally, concerned right along with me.  Then, she came up with a plan.

“Maybe, when you feel like Josh needs to, you guys could go to a strip club together, and Josh could get a hands-on lap dance…and he can get it out of his system that way,” she suggested.

Not even for a second did I entertain this idea.  It was the most horrifying thing I had ever heard actually.  The last thing I want to do in life is watch my husband get his jollies from another woman.  Especially if those jollies are something(s) I can’t give him anymore.  To watch him put his hands on another woman.  Umm, no thanks!  That was not the answer.  (And to be fair to Josh, he was equally as horrified.)

I’ve never been a jealous girl, and I haven’t been particularly insecure.  As a matter of fact, before we had kids, Josh was the singer of a band, and women (girls?) would ogle him and flirt with him and throw their underwear at him (Just kidding. I don’t think there was ever any underwear involved.) right in front of me.  I didn’t care.  I really didn’t.

Well, once, I did.  It was when a girl was trying to talk Josh into her over me as I sat right next to him and after I had already MARRIED him.  “Her?” she said looking my way in disgust. “She looks like a librarian.”

It took all I had not to scream, “At least, I don’t look like a whore!”  I’m a lady, and I don’t say such things.  Also, librarians have to use inside voices.  I didn’t have to though because Josh very nicely PUT HER IN HER PLACE.

When Josh went to bachelor parties before, I didn’t really care if they ended at the strip club.  Although, more often than not, they didn’t.  I knew that they weren’t really his thing.  I was his thing.

And I still know that I am his thing.  I just can’t handle the thought of him in a strip club.  Be it good or bad or fair or not, I just can’t, and it really has nothing to do with him.

So when I told him last night that I was worried/panicking a little, he again proved to me why I chose him.

“Oh yeah, you don’t have to worry.  I already talked to [the groom] about it, and it’s not going to be that kind of party.  And if it goes there, I won’t.  I understand why you feel that way.  You don’t have to worry, Heather.”

Again, I get myself worked up over things that I need not get worked up about.

Also, so what if I look like a librarian?  Librarians are hot.  And at least, I CAN READ.

Scanxiety.

Two days ago, I found myself in a waiting room with my husband vacillating between irritation (at best) and playfulness, feeling shaky, slightly breathy, and with blurred vision and a lump in my throat.  I was disproportionately aggravated by the man, a row of seats over, who was “blaring” youtube clips or somesuch from his phone.

“That’s so rude!”  I quipped, and Josh nodded at me tentatively, having already realized that the world — and he — was my punching bag this morning.

“I mean, we’re in an oncology waiting room not…” and I trailed off because I couldn’t think of when it’s not rude to blare video clips from your phone.  “There are TVs here,” which were also kind of getting on my nerves, the way they were all tuned into different channels.  “Or he could at least wear some earbuds.  It’s just so rude!”

And then I looked up at Josh and razzed him about much faster I had done my sudoku, grabbed two word searches from the shelf on the wall, and challenged him to a word-searching duel.

The last word that I couldn’t find was “expect,” and I was frantic to find it before they called me into the exam room.  I didn’t know what to “expect.”  I have come to realize that we shouldn’t “expect” anything, but I somehow felt like if I could just circle this last word in the search, I could regain some kind of control.  Like I might be safer.

Three months prior, inside the exam room, my smiley oncologist looked up at me and said all was well.  I had “nothing to worry about.”  Then I asked about scanning my left armpit to make sure all really was well.

Upon diagnosis, they were almost sure the cancer had spread to my lymph nodes based on a CT and an MRI, which was very “worrisome,” but lo and behold, when the surgeon got in there, he saw nothing, and the node biopsies were clear.  They had no explanation and all but gave me a flick of the wrist as explanation.  My oncologist’s fellow once mentioned following-up on this with future scans.

“So the other doctor mentioned doing a scan or ultrasound or something to follow my left armpit,” I mentioned three months ago.

And as if I had been harassing her for scans, Dr. Permasmile said that I “could have this one, but it’ll be the last scan.”  Umm, I haven’t had or mentioned one since the week of diagnosis but mmmkay.

So I waited and, really, mostly forgot about it until a few days before the appointment when I started picking stupid fights with Josh.

“Why did you just turn?  Grrr.  If you would have gone the other way, we could have saved, like, 4.7 seconds!!” or “Why did you bring me these pancakes and coffee in bed?  You know I’m trying to eat better, and this is just rude.”  So yeah, maybe not my finest few days.

But Josh is cool and grown-up and has better control of himself and stuff.  He says things like, “You’ve been so short with me today.  I don’t understand why you’re so upset…  Oh.  Your scan is on Monday.”  And he takes the day off when he thinks I’ll need him, even when I tell him I won’t.

I always do.

That's me pretending to be scared -- but really actually being scared -- to hear my scan results in two minutes.
That’s me pretending to be scared — but really actually being scared — to hear my scan results in two minutes.

On Monday morning, I went in for the CT scan, which literally takes, like, five minutes.  But those five minutes — going in and out of the familiar tube and hearing the man’s voice ring, “Take a breath.  Hold it.  And now you can breathe again.” — brought me back to darker times.  It reminded me of how vulnerable I am, of how much control I don’t have, of how lonely illness is, of how scared I was last year.

In there alone, it was me versus my body again, and I was terrified.  I had no reason to believe there were metastases — I have been feeling better everyday — but I also had no reason to believe I had cancer in the first place.  Had I not accidentally felt that tiny, little lump, I could have gone on for a while feeling just fine, I suppose.  It was like someone telling me, “Your shoe’s untied.  If you don’t fix that, you’re going to die.”  Huh?  What are you talking about?  I feel just fine…great even!

So I prayed and thought of my daughters as the machine did its job, all the while feeling like it was peering into my soul and was about to spill my deepest, darkest thoughts.  It had the power to make or break me.

When the technician came in the room to tell me it was over, she looked down at my tear-soaked face and asked, “Are you okay?”

“Yeah, I’m fine.  I’m just nervous,” I answered as I stood up, pulling my shirt back over my head.

“Did they tell you if a doctor was going to come in here before you leave and discuss your results?”

“What?” I replied, reeling. “Why?  No.  Nobody said anything.  Why?”

“Oh, I was just wondering.”

She’s not looking at me.  She’s not making eye contact!  Why won’t she look at me?  OH SHIT!  What did she see?

“Do they do that?  I have a doctor’s appointment in two hours.  I thought she was going to go over the results with me.”

“Oh yeah, that’s fine.  Sometimes people want to see someone before they leave.  You can go,” she said smiling but not looking in my eyes, according to me.

SHIT.  Shit, shit, shit.

Josh and I had almost two hours to kill before my appointment with Dr. Permasmile, so we went to a bookstore where it’s strictly forbidden to scream or shout.  (Good thinking, Josh!  😉 ), where I nervously flipped through a People magazine, sent out an SOS on facebook, and unsuccessfully tried not to think of what it would be like if I was rediagnosed at stage 4 that day.  What about my daughters?

Basically, I got myself REAL worked up.

I barely think it’s avoidable though.  I think it’s a universal cancer experience.  Scanxiety is real.  Oh, how quickly things can change.  One minute you don’t have cancer.  The next, you do.  It’s just that easy.  It’s not within your control.

“Heather?  Heather Lagemann?”

My heart raced and I struggled to swallow as my husband and I stood up to see the doctor and hear the results of a scan that had felt like cut me wide open.
20150902_122919NO FINDINGS TO SUGGEST METASTATIC DISEASE!!  ::Like, seven judo kicks and a little air guitar::  I mean, PHEW!  It was literally like a load off.  Walking out of there, I stood up straighter, I felt lighter, and hey look, I’m smiling again.  But why wasn’t that girl looking at me?  Healthcare workers, eye contact is important.  Like, SUPER important, you guys.

Cancer feeeelings, animated.

In a (successful) attempt to make myself laugh, I trolled the internet for gifs and captioned them.  I have to say, though, that it wasn’t entirely my original idea.  A favorite blog of mine, Semiproper, has a series called This is How I Feel.

So basically, this is how cancer makes me feel.

——————————————————————————————————————————

To my left boob, just before surgery.

gif-kwwillferrellspeech

——————————————————————————————————————————-

When I had to say goodbye to my right boob.

gif

 

——————————————————————————————————————————

When someone tries talking to me about how tumeric / cannabis / kale / positive thinking could cure my cancer.

gif1

——————————————————————————————————————————

The first time I went out in public without a wig or hat.

gif-voldemort

——————————————————————————————————————————

When my husband got home from work, mid-chemo.

gif-melissamcartney

——————————————————————————————————————————

When I wore a wig.

gif-seinfeld

 

——————————————————————————————————————————

When people try to talk to me about their loved ones who died of breast cancer.

gif2

——————————————————————————————————————————

Chemo: day seven.

gif-paulrudd

 

XOXO, Heather

Giving anger its day in the sun. Grrr.

Last week, I had a phone interview with a writer who annually produces a special newspaper insert, distributed nationwide, on cancer awareness and treatment.  She liked my blog so much that she wanted to feature me, but when we got on the phone, I was full of angst and cynicism and other glass-half-empty sort of stuff.  But mostly, I was full of anger.  I met her questions with biting answers.

When she asked, “Do you ever see a time when your blog stops serving a purpose for you and you leave it behind?” I answered with, “Yeah, I do, and really, I think it might be now.”

What a jerkface.

I was such a jerkface that she eventually said something like, “I’ve read a lot of your blog, and you seemed to move through cancer with positivity and humor.  Talking to you now, I’m wondering if you feel like who you are on the blog is a persona you created for your writing.”

Now, I’m sure those weren’t her exact words, and she was very, very nice in asking this — like she was really just genuinely curious about my “process” — but OUCH, dude.

But yeah, I deserved that.

You see, lately I’ve been ANGRY.  Straight-up mad.  I had *moments* of anger throughout treatment (like when I dramatically threw my $300 breast pump away or when I received my first big hospital bill and realized I was actually going to have to PAY FOR THIS with my money too)  but in the grand scheme of things, I think I skipped that stage.

I’m generally not an angry person so this is new territory for me.  I have to say I don’t like it.  As necessary a step as this might be, it’s not very becoming of me.  Last weekend, one of my best friends was home from Boston, and in trying to joke with him, I think I was just rude.  Anger is seeping right out of me and into my countenance.

My mother-in-law kept our girls overnight recently so my husband and I could have a date night.  Mid date, my husband looked at me and said, “I feel like you don’t like me very much right now.”  It was true.  I didn’t.  But that’s also because the very next day, I became a woman.  Again.  I literally felt like I was 13 all over again — I only wished my mom was around so she could call her friends and alert them of the news — I had nothing in the house to “deal with it,”  and I wasn’t sure if I needed to call off work for such an occasion or not.

Then, when I went to work, I complained that all the extra money I was making “at this hospital” was “going to another hospital” (to pay off my medical bills).

You guys, something has to be done.  I don’t like me right now.  It’s actually not me right now.

Last week, I told Josh that I was going to write a blog post about every little thing I was angry about as a way to purge it.  An exorcism, you know.  So I began keeping a mental tally, and I have to say, I started to feel better immediately.  I don’t think I need to share that post because it’s not my jam to spread negativity (The list ranges from being angry that I lost a big portion of Alice’s babyhood to cancer treatments to being angry that my nails are still peeling.  I mean, I’m angry that my finances are a mess and that my body will never be the same, but I’m also angry that Hanson never acknowledged me and that I have to deal with my bikini line again.), but I am glad that I gave it some thought.

My anger is valid right now, and I kept trying to push it away.  I kept trying to remind myself of all the things I have to be thankful for (pretty much alllllllllll the things!  I am truly one lucky lady.), but it only masks the problem and you end up being a jerk to those around you anyway.  So I gave my anger its day in the sun this week by consciously acknowledging each thing — big and small and seemingly insignificant — that I have lost or that I am just straight up mad about, and you guys, it has helped.

My friend has to turn around and come back to town this week so hopefully, I’ll get a second chance to tease him without being a jerk.  I know he would forgive me anyway.  I’m a little more nervous about this newspaper insert though.  : /

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.

Cancer really sucks. Especially today.

When I was first diagnosed, I got angry.  I would go to Target or somesuch, look around at other people, and get angry.  It wasn’t very nice, but it’s the truth.

“Look at her,”  I would think. “Why doesn’t she have breast cancer?  She’s huge.”

“And her!” I would think in the parking lot upon seeing a middle-aged woman putting out a cigarette on her way in. “I don’t understand why it’s not HER.  I’ve never smoked a cigarette in my life!”

I would look at children and wonder why MY children were so unlucky.  Why my children may have to lose their mother.

I would get mad at myself for having such thoughts.  I didn’t want anyone else to have breast cancer, but I couldn’t reason it for myself.  I am not the portrait of health, but I am not the portrait of unhealth either.

After one such trip where I deemed approximately ten other women more worthy of this diagnosis for various reasons, I laid in bed with Josh and cried.

WHY ME?

IT’S JUST NOT FAIR.

Then something happened to me that has never happened before.  Something that I wasn’t sure actually happened to people.

God spoke to me.  He whispered, “I chose you.”

I know many of you don’t like to discuss such things or just don’t believe.  But believe me.  God chose me.

He didn’t tell me why.  He never repeated Himself.  But I know, without a doubt, that this was supposed to happen.

Knowing this didn’t make the “journey” (what a dumb word for what I’ve been through) easier.  It didn’t make chemo hurt less or keep my hair from falling out.  It didn’t erase my fears or eradicate my tears.  It didn’t feed my kids when I could barely get out of bed.  It didn’t give my husband the sleep he was so short on.  But I did stop comparing myself to others, and I stopped asking, “Why me?”

Because God chose me.  God has plans for me that I may never understand.  Or never see the full effects of.

And I have to believe the same of Sam Biggs.

Sam was diagnosed with liver cancer, at five-years-old, just weeks before me, and although I only really know his parents and only met him twice, I kind of felt like we were in this together.

Sam died today.

It’s hard for me to understand why this would ever happen to a child, but I think, in God telling me that He chose me, he also let me know that He chose Sam.

I can’t speak for the heartbreak that his family is now experiencing.  And I don’t want to pretend to know anything about it because I don’t.  I can only imagine, and I don’t even like to do that.

I can speak for our community and say that we care.  I can say that, although Sam was only six-years-old, he moved us.  He changed us.  He made us better.

His parents may never understand why (or maybe they’ve had conversations of their own?), but we can help them understand how their family has changed us.  What Sam’s life meant TO US.  And we can make sure to be there for them when they need it.  Through prayer.  In hugs and meals and friendship.  By not forgetting Sam, whom God chose.

Biggs

**If you want to help but don’t know the Biggs family personally or don’t know how, you can always donate directly to the family here.  Even when cancer is destroying your life, you still have to pay for it…

My Glass Case of Emotion.

I feel like people are getting tired of me having cancer.  Like as tired as every little girl’s mom is of the Frozen soundtrack.  But, you know, it’s on non-stop repeat around here, and that may be too much for people to handle.  It’s too much for me to handle, really.  I wish I could mute it, but I can’t.  So instead, I’m trying to learn how to truly Let It Go without going cah-razy.

I mean, I get it.  I really do.  This stuff is heavy.  Five months and going is a long time to be so emotionally invested.  Heavy burdens and stuff.  Buuuut, I only have one more chemo left  (after I make it through this next week or so of yucks)!  And this bad boy below and those sweet smiles are keeping me going.

CountdownCollage

Josh and I NEEDED a visual representation that this would end.  I also NEEDED something to keep the kids busy on an afternoon when I wasn’t feeling so great.  Double score.  Seriously, you guys, this pink posterboard countdown is doing its part in keeping me sane.  With such irrational JOY, I cross off another day.  And although Penny really wants to draw the “X” at bedtime, I’m a mean mommy.  This fight is definitely all for the family, but those little pink boxes are mine.

Anyway, Monday was chemo 5 of 6, and I always think it will be just fine if I go it alone.  I mean, it’s just a little blood work, doctor’s appointment, and infusion.  However, my standard answer to, “How are you feeling?” right now is “Physically, I feel like an 82 year old, and emotionally, I’m 14,” so I should always know that Josh needs to be there.  I tell him not to miss work, but he knows better.  I mean, you don’t let a 14 year old go to the doctor alone, right?

Usually, before I see my oncologist, a resident or an NP assesses me, and last time, I saw the resident.  Upon seeing some fresh bruises, he told me that my blood counts are low (duh!) and to try not to hit my head on anything (mmmkthanks,duh!).

I smirk.  “That’s kind of how I live my life anyway.  You know, not hitting my head.”

He half smiled, half looked at me like I was an idiot.

For real though.  Do I really need instructions not to hit my head?  I’m pretty sure I’ve always tried to avoid concussions, subdural hematomas, and brain bleeds in general.  I’m a nurse, you know.  And my GPA has always been higher than most.  I’m not an idiot.

Except, after three weeks, I HAVE taken greater care not to hit my head.  Who am I?  And why was there room to improve my head protection abilities?  I am now questioning my whole life (because the cancer wasn’t enough to spur this new train of though.  jk. jk.)  Just, wow, is all.

Anway, THIS time going into my appointment, I silently prayed that I would see the nurse practitioner.  You see, I’ve been, uhh, emotional lately, and I knew that Mary was the only one I would actually discuss this with.  I’d guess she’s about the same age as me.  She has two daughters the same age as mine.  She feels a little like a girlfriend at the doctor’s office.  Her background is nursing, and I can feel it.  She’s much more organized and listens to my concerns.  At the risk of sounding dramatic, she sees me.

When Mary walked in, I immediately felt more cared for.  For the first five minutes, we didn’t even discuss my health or the cancer.  We talked about our kids and caught up.  That’s as long as my oncologist is usually in the room.  When she finally asked, “Well, how are you doing?” I looked her straight in the eye and said, “I’m crazy.”

“I’m crazy.  Or I feel like I’m going crazy, you know?  I’m not usually like this.  I’m emotional,” and tears form as if on cue, “irritable, moody.  Sometimes, I get a lot of anxiety about the future.  Fear.  I just feel so emotional and crazy right now.”

She tilts her head.  “I don’t know if this will make you feel any better or not, but I have had this same conversation probably ten times today.  This really is normal.  It’s not only your hormones but also chemo does a lot to your body.”

This conversation came an hour after an echocardiogram (ultrasound of my heart) that I cried through because the lady had to use contrast dye.  In all fairness, at the beginning she noted that she was happy that my port was accessed in case she did, in fact, need to use contrast dye.  When I said, “Well, that wouldn’t be good.  Let’s hope not,” she agreed.  Thirty minutes later, she looked at me shirtless and in the dark and said, “It looks like we do need a little contrast, honey.”

Glass-Case-of-Emotion

It turned out fine, but geez, I don’t like being this girl.  And I’m pretty sure I know how Josh feels about my “mood swings.”  It’s not all day every day, but it’s enough to drive me crazy.

Mary and I talked all about it, and she ultimately suggested an anti-depressant, which makes me feel weird.  My doctor then came in and pretty much threw a script at me, no questions asked.

I haven’t started it yet.  I just never saw myself headed here.  I probably will, but I’m just not sure.  I don’t feel depressed.  Just unstable.  lololololol.  For the most part, I am happy.  Punctuated with moments of extreme sorrow, anxiety, fear, annoyance.  And those hot flashes.

That’s probably pretty much an ad for an anti-depressant, right?  Well, I am all for sharing with you guys, and I don’t want to sugarcoat this journey too much.  So this is probably happening.

On another note, I bet you didn’t know this happens at chemo.

20140908_193405

Yeah, those jerks (just kidding, lovely nurses!) ice my fingers and toes during one of the hour long meds so my nails don’t turn black and fall off and stuff.  Blah, blah, blah.  In turn, I get to feel like Olaf while trying out my Elsa powers.  Tooooo muuuuch Diiiiiisney.

Also of note, I am trying to figure out what to be for Halloween.  I think it would be fun to incorporate my bald head.  Like, I could be Britney Spears, circa 2007, which would also accurately represent my mental state AND make me laugh a lot.  Or Dr. Evil.  I’ve had suggestions of Charlie Brown, Daddy Warbucks, Mr. Clean, GI Jane.  What do you guys think?

So that’s about it.  Chemo countdown.  My craziness.  Heather Ice Hands.  Frighteningly similar to Brit Brit.  Yeah.

“Hi, I’m Josh. And that’s my girlfriend.”

When Penny was born at 3 lbs 3 ounces, she was swept away to the NICU, and I was drugged and confused.  To be honest, it wasn’t a great day.  Alice’s birthday, on the other hand, is one of my all-time favorite days, but Penny’s birth was scary and full of unknowns.  After the surgery itself, the first thing I really remember is being in a hospital room full of my family, who told me that my blood pressure was too high, and I broke down.

“Heather, why are you crying?” someone asked.

“They didn’t even let me hold my baby.  I haven’t even seen her or gotten to hold her yet.  They just took her away.”

My brother or cousin, I’m not sure who, then brought over a camera and showed me a picture of me holding Penny.

When I think about it now — now that my beautiful baby girl is almost four and healthy — it’s funny.  Sometimes, I even tell that story and laugh.  But at the time, doctors were warning Josh and me of a possible guarded future for our newborn.  They told us they didn’t know how she would function neurologically.  They said she might be a little “slow.”  It was a wait and see.

NICEPenny

In all honesty, it took me a couple of weeks to really bond with her.  I was hurting physically, scared for this little girl, and unsure of our future.  But not Josh.  Josh fell in love with her that very first night.  He couldn’t stand her being out of our sight.  I could barely move, but he constantly left to check on her.  The first time he didn’t come back (for an hour and a half!), I thought something was seriously wrong and he’d come back bearing bad news.  I braced myself.  Instead, he came back with a smile on his face and a pep in his step.

“What’s wrong?  Why were you gone so long?”

“I just couldn’t leave her there.  I’m sorry.  Were you worried?”

Uhh, yeah.

“They said I could hold her!  So I took my shirt off and held her skin to skin.”

He beamed as he told me all about how she felt against his chest and the little songs he sang to her, and I knew he was hooked.  I knew that he would take care of this little girl better than anyone in the world.  I knew that she would always be safe in his arms.  I knew that no matter what happened, he was the perfect dad for her.  Because that’s who Josh is.  He is full of love.

I tell you this because, as we go through this hard time, I find myself feeling so sorry for Josh.  I find myself thinking that he just can’t take all of this.  Or shouldn’t have to.  There’s so much pressure on him right now.  It feels like I am falling apart, and he’s not allowed to.  His workload is incredible and time for himself is non-existent.  He is so tired.  I can see it in his face.  I can hear it in his voice.  But he tells me it’s okay.  He tells me that we will get through this and move on.

I guess I just wanted you guys to know that he, too, is struggling.  And that he is pretty amazing.  The way he loves Penny is the way he loves Alice is the way he loves me is the way he loves his twin brother is the way he loves his mom.  He’s the guy that wouldn’t take no for an answer.  (I canceled, like, three dates before going out with him.)  He’s the guy who, after only a date or two, showed up at my work with a winter coat because he didn’t think mine was heavy enough.  My girlfriends and I weren’t sure whether he was suuuper creepy or just that nice.  He’s just that nice.

Unless you hit on me right in front of him.  One of the funniest things I’ve ever seen was Josh putting one of my older brother’s friends right in his place with absolutely no qualms.

After a few catcalls and in jest, but lewd comments, Josh walked right up to the guy, looked him straight in the eye, and extended his hand for a shake,

“Hi.  I’m Josh.”  He points to me.  “And that’s my girlfriend.”

He turned around and walked back over to me without even waiting for a response, and the poker table they were all seated at erupted in laughter, along with my girlfriend and me.

Early on, though, I didn’t think he was the “right” guy for me so I tried breaking up with him once or twice.  He talked me out of it.  He had so much faith in us that, after only a few weeks of dating, he bought us concert tickets for EIGHT MONTHS LATER.

Whoa there, dude.  Calm down.  You’re freaking me out, and is it hot in here?  I can’t even commit to these shoes for the next eight months.  Let’s just slow this train down.

But yeah, we went to that concert.  And during a time when I don’t know what’s up or down and I can barely hold myself together, I’m glad that Josh is always so sure.

Wedding