Category: chemo

Hi, can you tell me where the emergency exit is?

Before all these cancer shenanigans started, I would sometimes wonder how I would do in “the fire.”  You know, like, what kind of stuff am I really made of?  Could I give an ass kicking to whatever it was that threatened me and mine?  Or would I just crumble at the weight of it?  (Am I the only one who has thought about what it would be like to have cancer?  Or to be paralyzed?  To lose a child?)

An unrelated but super cute old pic of Penny "fighting fire."
An unrelated but super cute old pic of Penny “fighting fire.”

To be honest, I’ve lived a pretty cushy life.  I’m not saying that I haven’t had my fair share of adversity and heartbreak, but it’s pretty first world problem kind of stuff.  Middle class white girl stuff.  I’ve never broken a bone, have always had a roof over my head, and if I was ever in any real trouble, which — besides the cancer — I really haven’t been, there’s an army of friends and family who I could rely on for help.

Like these guys.
Like these guys.

I have to say that being in the fire was nothing like I imagined.  I now almost flinch at the constant comparisons of cancer patients to “fighters” or “warriors” or “survivors.”  To me, it implies that we have some sort of control over the outcome if we can just rise up enough, and it implies that those who ultimately die of the cancer somehow “lost” or weren’t good enough.

The way I see it is that the only “battle” that I really fought was with myself…and I’m still fighting that battle, fyi.  Because cancer is the biggest mind eff there ever was.  (Well, I’m sure that’s an exaggeration, and I can absolutely think of worse things, but for me, right now, yes, the biggest mind eff.)  There was nothing I could do about the cancer except to go along with my doctors’ treatment plans.  No amount of positivity would will the cancer away, and for that matter, no amount of kale juice or turmeric or cannabis oil would either.  It was, in fact, my doctors who were fighting that “battle.”  I was merely the battleground.

I heard a lot of “Heather, you are so brave!  I don’t know if I could do it…”

What?  Arrive at your doctor’s appointments on time?  Because if I had ANY choice in the matter, I’d run the other way screaming.  If it was the same either way, I’d choose to never have a day of chemo in my life.  And surgery?  Wouldn’t. Have. Happened.

I actually really appreciated those kinds of kindhearted words.  Don’t mind my internal quips because I really do know people were just trying to build me up…and maybe doing that whole “How would I handle this situation?” thing with themselves.  It actually did give me strength (Thank you!), but I was never really sure how to respond because I didn’t feel particularly brave.  I felt trapped.  I felt forced to do awful, awful things that I didn’t want to do.

Looking back (because five months out from chemo is such a long time), I think I was missing the point.  I think I was being a little hard on myself and possibly you guys.  Just like the cancer “fight” is largely a mental battle, I think being brave is also a mind game.

Sure, I absolutely, unequivocally did not want to have a double mastectomy, but I did it.  And that morning, my only goal of not freaking out was accomplished.  Instead of focusing on what I was losing, I managed to keep my mind on what that surgery was giving me — my life.  I convinced myself that this surgery was pretty much the best thing to ever happen to me (besides my husband, my children, Mmmbop, the Frito Burrito, jeggings, this blog, and my eyelashes growing back).

Thinking back on that, I realize that I am super brave, so take that, fire!  Not only did I send my beautiful breasts to the bad boobie graveyard (RIP, righty.  Screw you, left boob.), but I did it with a smile on my face and a gratefulness in my heart.  I may or may not have — but, for sure, definitely did have — some pretty rough chemo days that I wouldn’t call “brave.”  In fact, I did crumble.

But now I know what that feels like, you know?  The gifts cancer gives are pretty few and far between — it’s categorically an asshole — but if cancer ever did give me a gift, it was the gift  of knowing who I am.  I learned more about myself in this last year than I have in a lifetime.  It was like I woke up and saw myself.  I learned who I love (There are exactly six friends who really, REALLY matter to me.), what I believe in, and even what I like to do.  I learned that I am not so patient, Josh and I really do make a good team, and bald is not my look.  I learned what the fire felt like.  I learned that, even if I crumble sometimes, I am brave.

Still, I don’t want anymore fire in my life for a while or for, like, ever.  So friends, good gifts ideas for my birthday or Easter or next Tuesday are smoke alarms, fire extinguishers, emergency exit signs, etc.  Just kidding.  I’ll take shoes.  (Size 6.)  Besides, you’re probably still trying to figure out if you made the cut anyway.

How to talk to someone with cancer.

One of my best friend‘s dad died just before Christmas.  She called, and I met her at the hospital almost instantly.  It was the same emergency room that I went to to say goodbye to my mom.  Not only had I been in her shoes, but I grew up with this family.  They ARE family.  The thing is — I still didn’t know what to say.  I know, from experience, that they will likely not remember what I did or didn’t say, but that night, in raw shock and grief, my friend looked to me for some guidance.  “What do I do now?” she asked.

At their house, at the funeral, over the phone, and even now, I struggled to find the words.  I settled with a hug and different variations of “I’m so sorry” and “I love you” knowing that there are no right words.

When I was diagnosed with cancer in April, I saw this same struggle come over people.  They didn’t know what to say to me.  And every hurdle I faced, there was a new crop of solemnity in the eyes of those surrounding me.  People just didn’t know what to say.

Truthfully, there is almost nothing worse than silence, but in the case that someone said “the wrong thing,” it never really bothered me.  I’m not easily offended, and I realize the difficulty of the situation.  I understand that saying anything at all is akin to saying, “Hey, I care,” so I honestly appreciated everything anyone said to me.  You guys really pulled me through with love and grace.

With a few exceptions.

There are really some things you just SHOULDN’T say to someone with cancer, and I’m here to help.  (If you said any of these things to me, don’t worry, we’re cool.  Just, you know, maybe hold it back next time you’re trying to think of something to say in the face of something as awful as cancer.)  It’s a short list (only two things), but here we go.

“But you could get hit by a car tomorrow.”

No.  Just no.  My husband actually said this to me the other day when I was talking about my fear of dying from this horrible, awful disease (which spawned this whole post!), but he’s not the only person that has used this line.

The problem.  It dismisses the fear.  The valid, legitimate fear that cancer does and can kill.

Also, do you see a car trailing behind me?  Because I ACTUALLY have mutinous, killer cancer cells IN MY BODY trying to take me down.  Until there is a car gunning for me full speed, just no.  It is not the same thing.

“My aunt/sister/boss/mom died of breast cancer.”

Oh, how nice.  Let’s talk about how slow and painful it was too.

The only time you should say this to someone is if they are your mortal enemy.  Like, if you hate someone, really hate someone, and they are diagnosed with cancer, then you could probably give them a whole list of people you knew who died of that type of cancer and consider yourself one up.  In that case, however, you are a ginormous asshole.

Honestly, when anyone said this to me, I knew that they were just trying to relate with me.  I knew they were *trying* to say, “Hey, I’ve seen breast cancer, and I understand.  I know it’s tough, I know it’s scary, and I know what you are facing in the days ahead.”

But you really should just hold that little nugget inside unless you want to make my day worse.  Because it always did.  Hearing of someone who died of breast cancer, ESPECIALLY in the early days of diagnosis, was panic inducing.  I can handle it much better now, but let’s be honest, I am now also taking an anti-depressant and anti-anxiety meds at bedtime.  So bring it on; I’m covered!  Just kidding.  I still don’t like to hear about it.

On the flip side, if you know of someone who was diagnosed with breast cancer and is, like, twenty plus years out, feel free to mention that.  Those stories I welcomed with warm hugs.  But don’t expect me to go too crazy.  In twenty years, I’ll only be 53.

There are also things that people wouldn’t say that I wished someone would have.  Like, “Wow, Heather, you look like shit.  Chemo must be a real bitch.”

Everyone was so quick to say how good I looked, considering, and they usually left off the “considering” part.  Now, I know darn well that I didn’t look good — bags under my eyelash free eyes, a bald head, and a partial grimace on my face — and I didn’t feel good.  I also know that people were just trying to throw me a bone, but if someone would have just conceded that I looked pretty awful, I would have been all like, “I know, right?  Thank you!  I feel pretty awful, and this cancer is really taking me down a notch.”  Validation.

Be careful with this one though.  First, I’m not sure that every cancer patient feels the same way, and second, not just anyone can get away with it.  There are definite rules.

If it looks like I tried at all to throw myself together, wait until next time.  Signs that I tried to put myself together whilst in chemo: a wig, anything other than pajama pants, chapstick.

Also, you must be in the inner circle to say it.  I figure there are about twenty five people in my life that I would have welcomed such a comment from.  Brothers, cousins, best friends.  You should know if you’re in someone’s inner circle.  If you’re not sure, just don’t.  Remember when I went back to work, and someone commented on my weight?  Not cool.  If you aren’t in the inner circle, keep the compliments flowing.  My self esteem has just taken a huge hit.

If my brother/cousin/best friend had walked through the door, dinner in hand and said, “Damn, Heather, you look like hell.  How you feeling?” I would have laughed and loved it because someone has to keep it real.  It gets pretty old hearing how “great” you look bald and how lucky you are not to have a misshapen head when all you want is your long, lovely, feminine hair back.

Keeping it real is what I craved a lot of the time.  Which is why I often enjoyed the company of children.  They don’t always know not to keep it real.  Penny was great at it.  My friend’s son showed no signs of hesitation at commenting on my bald head with a “Why aren’t you wearing your wig?”  My niece, Abbi, is one of the only people who talked with me about the possibility of my death, and she’s seven.

She spent the night at our house mid-chemo, and upon seeing my bald head for the first time, I saw her thoughtful face, and said, “The medicine I take made it fall out, but it will grow back.”

“I know.  My dad told me,” she said and sat for a moment, never looking away from me.  “I know that you could die from cancer.”

“Yes, I could.  I really could… but I don’t think I will.”

“Me neither.”

I can’t tell you how good that exchange was for my soul.  Someone said it.  Someone finally said it.  My doctor never even said it.  She gave me odds, numbers, but NO ONE says things like, “You could die,” but it’s true.  And it’s so good to hear someone else say what you know and everyone else wants to gloss over.

Just don’t say nothing.  Don’t drop out of someone’s life because you don’t know what to say or how to approach them.  Because that is the very worst.  Truly, with the exception of the aforementioned phrases, there are no wrong words.  As long as you approach someone with love, they feel it.  And if you really are at a loss for what to say, just remember not to be afraid of whatever it is that is going on.  No one once reminded me that I had cancer; it never left my mind.  No one made my day worse simply by bringing it up; I always appreciated the support.  If words still fail you, go in for the hug and mean business.

The Chemo 15.

I had a sudden realization whilst at the Halloween parade with Penny.  What happens if I go to New Orleans?  Mardis Gras?  How am I supposed to get beads, you guys?

My girlfriend pointed out that I would never have employed such tactics anyhow, but that’s besides the point.  What if I needed some beads to save my life?  Like, a murderer said he would only let me live if I could get some beads RIGHT NOW, and I can no longer do the international signal for “give me a cheap plastic necklace?”  It’s a problem I’m going to have to add to the list.

Sometimes I hope my daughters will never find this blog.  (Just kidding about almost everything I ever say.  Mommy loves you.  Please don’t flash your boobies.  Use your brains to get what you want.)

Anyway, I went back to work last night.  Kind of.  I only worked a four hour shift, and they let me work with another nurse just to get used to being there again and to learn some of the computery things that have updated since I last worked.  I was really nervous that I had forgotten everything ever and that chemo brain would render me useless, but it’s funny how things just come back to you.  Like, I even remembered the IT help desk number, which I called maybe three times in five years.

I was nervous, too, because there was a massive turnover in the months of my absence and a lot of my friends left.  I didn’t want to show up in my beanie, not knowing anyone, and be only known as “the cancer girl.”  I don’t know if that happened, as there were so many new faces, but I guess I don’t care.  It was just so nice to see and catch up with the people that I do know and love.  Plus, I’ve learned a thing or two about holding my head up and/or mentally blocking stares, head tilts, pity glances, and that look people give you when they’re trying to figure out if your eyebrows are real.  (Since I learned how to fill in my eyebrows a few weeks ago, people keep telling me how much healthier I look.  Smoke and mirrors, my friends.)

Overall, it was a good night at work and with friends, but I do have to mention this.  Because this did happen.

After all the pleasantries of being back:

“Heather, have you gained some weight?”

::Mental pause to see if my coworker really just said this to me::

“Why, yes, I have.  About fifteen pounds.  Thanks!”

“I can see it.  Especially in your face.”

To which, I think I launched into a mini diatribe about how breast cancer specific chemo (and the steroids) actually make you gain weight.  Even though my family was worried I would lose weight in the beginning, my doctor assured them that I would, in fact, probably gain 10 pounds.  And I’m an overachiever.  Don’t people know about the chemo fifteen?  Duh.

And don’t people know not to look you straight in the eye and ask if you’ve gained weight?  Aaaaand then proceed to tell you that your face is fat.

What do you want from me?  When I gain weight, it goes straight to the cheeks.  The ass and the face.

Oh, well.  Although I was initially appalled, twelve hours later, I kind of think it’s hilarious.  I also kind of think it’s time to get to the gym.  Remember when I said I got a gym membership and was working out?  You see, about that…  That stopped after about the second chemo.  With my blood counts so low, I got winded going up one flight of stairs or trying to vacuum or walking into the library from my car.  And then there was the inexplicable soreness.   And just all the other things that chemo does.  I am starting to feel better these days, and being called out like that only reminds me that it is time.  Time to bring it back.

I’m just not sure how to fit everything in.  Even working minimally, my life sometimes feels like a circus of laundry, bill paying, grocery shopping, and itsy bitsy spidering.  Some days I feel like the only thing I accomplished was thrice making a mess of the kitchen and thrice cleaning it back up.  I know that I am not unique in this way so how do you guys do it?  Does anyone have a magic system that suddenly makes it super easy to balance all the adulty responsibilities?  (I’m much more of an adult now, you know.)  And please don’t tell me to wake up at 5 AM while my children are still asleep because that’s not happening.

And please don’t tell me my face is fat.  I just don’t like it.

For Whom the Bell Tolls.

Just before my first chemo treatment, I spotted “the bell” on a wall in the waiting area.  No one rang it that day, but it gave me hope.  That stupid little bell gave me a goal.  It gave me focus.  It even gave me an outlet.

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After that first meeting and making it through my first chemo, I started to form a strange relationship with the bell.  I would sometimes stare at it across the crowded waiting room like we were in the school cafeteria and I had been practicing writing “Mrs. Heather Bell” in my Lisa Frank notepad.  I would picture myself ringing it.  (How many times would I ring it?  How hard?  Would I cry?  Who would be there?  Should I look directly at it?  Away?  Should I buy it dinner first?)  I would watch other people ring it and, almost every time, be moved to tears.  Eventually, I started to trash talk the bell.  And, like, straight up threaten it.  I’m pretty sure I told it that I was responsible for cracking the Liberty Bell and it better watch out.  I told it that I was lifting weights (pshh, yeah right).  I may have even thrown a few yo mama jokes its way.  I definitely did that “intimidating” move where you jerk your head forward with crazy eyes.  IDK.  I’m not very good at intimidation…or trash talk.

Well, last Monday, I FINALLY got to ring that damn bell after my sixth and final chemo!  I have to say that I started the day pretty down.  Josh and I made our way to the hospital, and I knew that I should be excited…but I was in a funk.  I mean, part of it could be that, whether it was my first or last, I was still on my way to chemo and a couple more weeks of feeling not so hot, but I also think it’s pretty scary to come to the end of this.  I couldn’t put my finger on it, but I just wasn’t in a good mood.  And I *almost* made it through the day without crying.

I actually felt a little sorry for the resident.  We had been discussing things just fine, and he mentioned that my daughters would need to start “vigilant screenings at 25, including breast MRIs,” and I just started crying without warning.  He immediately looked like a confused fifteen year old boy, handed me an empty box of tissues, and did a lot of stammering.  He obviously doesn’t have children, and I obviously overreacted.  I apologized profusely, and he did not mention my daughters again.

But, 25?  At 25, I was standing in the same church that both of our parents had been married in and saying “I do” to my husband.  At 25, I was figuring out that I wanted to go to nursing school.  I was living off of diet coke, cereal, and love.  I was poor and so very carefree.  At 25, Josh and I read books to each other every night and went on walks whenever the mood struck.  We drove around, endlessly, looking at houses for fun and listening to music with the windows down.  At 25, I was not worrying about breast cancer.  (Should I have been??)  At 25, I was not facing my mortality, and I was not inside of an MRI machine fretting.  I’m not saying that maybe I shouldn’t have been.  I’m just saying that it’s not the 25 I wanted for my daughters, and it just makes me sad.

Afterwards, chemo went as well as chemo goes.  I watched some HGTV, sent random texts, wondered why everyone at chemo had hair, and did not inform my nurse that she was supposed to ice my nails when she forgot.

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My brother, Paul, and his wife showed up at around 8 o’clock to watch me finish and ring the bell.   By that time, I was in a better mood and wondering why there were no late night chemo party rooms.  I am always there late, and overall, I am very disappointed at the chemo round table.  The movies taught me that I would make my new best friend at chemo.  We would laugh and cry with each other when our hair fell out.  We would trade foobs (fake boobs) and fingernail polish.  We would go to puke into the same trash can, bump heads, look up, and laugh while finger pointing instead.  Obviously, one of us would die, and it wouldn’t be me.  But that’s just how it goes.  jk. jk.  For real.  And also, does it make you uncomfortable when I say “die?”  I’ve noticed that.  I can’t just say, “These shoes are KILLING me!” or “I’m DYING to go to the pumpkin patch next week” anymore.  But I still do.  Because you guys get a little uncomfortable.  And it makes me laugh a little on the inside.

Seriously, though, there are six to a chemo room, and they should group them by some demographic.  Like the old guys who just want to sleep but bring along their super talkative old lady wives.  Group ’em up.  Single and ready to mingle.  Put ’em together.  A knitting club, movie buffs, people who are always coId, retired truck drivers, cat people, people who love Hanson, Harry Potter, cheese, and laughing at cancer.  Oh, or BINGO room!  I would totally hang out in the bingo chemo room and set out my troll dolls and pictures of my kids and cats.  I really think these are solid ideas, you guys.

But anyway, I did manage to make it out to the bell and finally get a piece of that action.  I’m not sure what I expected, but more than anything, I was just excited.  Since it was so late, there wasn’t a crowd in the waiting room to clap for me.  It was just Josh, Paul, Rachael, and me, but I think it was better that way.  I got to ring it as much as I wanted.  There may have even been some attempts to judo kick it.

PicMonkey Collage

A week later, I have to say, there should be another bell for when you’re REALLY done with chemo.  Cuz it sho don’t feel like I’m done yet.  Soon enough, I know.

I’ve also got some other things on my mind that I need to fill you guys in on, and I’m sorting through a lot of emotions and, really, this whole year.  I will update very soon, but for now, I’ll just leave you with this video.  It dually represents how awkward I feel while being filmed and how happy I was to ring that thing.

Road trips and chemo mouth.

In my early college days, a couple of my best friends and I spent most of our money driving all over the midwest and the south to see different bands that we loved.  We drove for hours, stayed in cheap motels, and lived off of Taco Bell, vending machine food, and that weird peanut butter and jelly mix that comes in the same jar.  It was amazing.

But the thing is, as twenty year olds will do, we also played lots of tricks on each other.  You know, like making your friend think you left her at the restaurant while she was in the bathroom.  Or filling her water bottle with vodka from the mini bar and dying of laughter the moment she takes a huge pull.  Or passing off dog treats as cookies.  Basically, we messed with each other’s food.  A lot.  Like, you better not leave your drink unattended or it will likely be salted.  Or worse yet, thrown out the window of the moving car.

You guys, chemo is trying to be that same kind of friend to me but doesn’t know how to play it.  It’s kind of an asshole.

For example, the other day after feeding the girls lunch, I baked some lasagna roll ups that I made and froze before chemo for myself, and my thoughts went something like this:

I’m so hungry!  And these smell so good!

Nom nom nom.

Wait, this tastes funny.  Is this bad?  I can’t tell. I never can tell anymore.  It’s probably okay.

Nom nom nom.

It does taste funny.  It’s probably just my mouth.  But they have been in the freezer for over three months.  And they are made of cheese.  How long can you freeze cheese anyway?

Nom nom nom.

I wish Josh was here to taste this and tell me if it was safe.  Oh man, I remember that time he tasted my breast milk, and it WAS bad.  Twice.  He puked that second time!  He would definitely tell me if this was bad.  

Nom nom nom.

I should invent the seeing eye dog equivalent of dog food testers for chemo patients.  It could, like, smell a food and let me know if I’m about to poison myself since my own taste buds are so unreliable.  Someone could totally poison me right now, and I wouldn’t even suspect it! 

Nom nom nom.

Oh, here comes Penny.  She wants a bite.  I’m not sure if I should give her any.  What if it really is bad?  But how can I tell her she can’t have a bite as I sit here and eat it?  Okay, I guess I’ll just see if she says anything.  Am I being an awful mom?  What if I’m food poisoning her right now with rotten lasagna?…  Oh, she wants another bite.  I guess it’s okay.  Here comes Alice.  She wants some too.  Geez, I JUST fed you guys.  Why can’t I ever just have something that’s mine?  Or eat in peace?  Or poop in peace?

All the Lagemann girls: Nom nom nom.

Oh, they lost interest.  Yeah, this tastes funny.  I’m done too.

Seriously, a lot of food just tastes weird right now.  My mouth itself, like just sitting here, tastes like poison — bitter and muddy.  Some things tastes worse than others, and drinks are definitely worse than food.  At a time when I’m supposed to stay suuuper hydrated, water is the devil.  It tastes like dirty, well water and pennies.  Josh is ever so nurturing and gets very frustrated and worried when I’m not drinking enough water.  But I kind of feel like we’re on Fear Factor and Josh is Joe Rogan asking me to drink the urine of a dying warthog or a pitcher of sharts or something.  I did once eat a bug for a dollar, but water is almost out of the question for about two weeks after a treatment.

For the ultimate eff you, first chemo makes me more tired than I’ve ever been in my life (and yeah, I’m laughing at you first and third trimester Heather, and you nursing-a-newborn Heather), and then it takes away coffee.  Chemo and coffee must be sworn enemies.   But sometimes, I choke it down anyway because I don’t know if it’s humanly possible to take care of a one year old and a four year old without coffee.  And you don’t get between a white girl and her pumpkin creamer.

Oh well, there are worse things, for sure.  And maybe, in this case, chemo mouth will make the palate grow fonder.  Or something.  I’m hoping I’ll be all like, “Oh hey, kale and beets!  I never properly appreciated you guys!  Now that I know how truly disgusting things can taste, you guys are just delicious.  From here on out, you and your vegetable friends are all I ever need!”  At least, a girl can hope.

Just don’t unpack and live there.

You guys, the other day I was taking care of business (business = my kids) with daytime tv on in the background, and a commercial came on that caught my ear.  You know the kind.  If you’re currently experiencing restless legs, blurred vision, the appetite of a high school football player, vampire fangs, and an uncontrollable urge to twerk — IDK — ask your doctor for THIS medicine so we can make a buttload of money.  Except I was like YESSS!  to all symptoms.  I looked up to see who was reading my mind, and it was a very nice looking grey haired woman speaking.  For a menopause medication.  Yeah, so that’s where my life is right now.

I must also note, the idea of a hot flash is kind of hilarious, but hot flashes are NO joke.  I have always been the cold type, but I am freezing my family out right now.  I should probably put hats and mittens on Alice while I lounge around bald and in my underwear.  Summertime is not the ideal time to go through this.  Wigs, sharing a bed with anyone, and babies with fevers who want to lay on me all Labor Day long are not my favorite things right now.

In keeping it real news, after I told you guys about needing radiation a couple of weeks ago, I let myself go to a bad place.  I stayed there for about a week, and I couldn’t stop thinking about the word “aggressive.”  It was a terrible place to be, and I couldn’t stop my mind from going down a lot of roads that left me partially paralyzed and on the brink of depression.  I felt really guilty and knew that I needed to pull myself out of it.  Then I talked to my dad who put some things into perspective for me.  He simply said, “Heather, it’s okay to feel that way, even healthy.  You can visit.  Just don’t unpack and live there.”  As much as I don’t like that place, I can visit; It’s probably necessary.  I just won’t unpack and live there.  Thanks, dad.

I figured a week is as long a vacation as anyone takes, and this was one of the worst places I had ever visited so I got back to my life.  It has been refreshing and fun.  So that’s what I’m going to focus on this time.  My life.

Like, I have had dinner with friends twice and Josh once (ALONE!  Holla! <— Wait, people don’t say that anymore, do they?  My cool speak has a different definition now and includes phrases like “You get what you get and you don’t throw a fit.”  Maybe someone can debrief me on some hip phrases.  You know, like Darryl did for Michael on The Office??)

Penny started preschool, but is definitely too cool for me.

PreschoolPenny

The girls and I have been able to make it the last two story times at the library, and Uncle Paul even accompanied us to one.  I’m pretty sure he was traumatized.  Kids were everywhere — throwing fits, refusing to sit on “the rug,” crying, trying to escape, hitting each other.  Per ushe.  And there were two types of moms.  The dejected mom and the mom who is so excited to see other adults that she talks the whole time.  I am definitely among them. I get it.  (Upon relaying my brother’s surprise that we talked during story time to another mom, she was all, “We’ll talk through a eulogy.  And a presidential address.”  We get hard up for adult convo, yo.)

After the library, Uncle Paul did help plan and photograph an important moment in Penny’s life.  Her wedding to “Old Teddy.”  This day has been a long time coming.

TeddyWeddingCollageWe also celebrated Alice’s 1st and Penny’s 4th birthdays last weekend with a princess party!  Sidebar: If you have styrofoam swords and wands as party favors, maybe give them out at the end of the party if you don’t want an absolute brawl to break out.  The kids LOVED them (I’m pretty sure it made the party.), but I was sure that my mother-in-law was going to kill me since the party was at her house.  She did not.  Nary a word.  Sometimes this cancer thing works to my advantage.

Also, I almost had a pinterest fail to show you guys.  Midway through this castle cake, it looked like a lost cause.  For serious.  I literally said, “Well, we can serve this alongside a picture of what it was supposed to look like so people can get a good laugh.”  But Josh took over and saved. the. day.  It’s not perfect, but we all loved it.  I did not think the end result was possible.  Josh has mad piping skills.  I have mad put some princesses on the cake to hide some stuff skills.

PicMonkey Collage

After the party, I went to a benefit for an old friend of mine’s son, Sam.  A few weeks before me, he was diagnosed with cancer AT FIVE YEARS OLD.  I just don’t even know how that happens, and it seems so unfair.  But this little dude is now done with his treatment, and I had the sweetest little conversation with him that, really, I can’t stop thinking about.

His mom brought him over because he noticed my pink hair.  She said they had a conversation about it, and he wanted to ask me a question.

In the sweetest little voice that melted my mom heart, “Do you have cancer too?”

“I do.  Yes.”

“Do you have a port too?”

“Yeah.  Like you.”  And I pulled my shirt back to show him.

He smiled and showed me his port too.  All the cool kids have ports, you know.  (What’s up, Garrett!)

That was it.  But, man.

This world is wonderful and scary and sad and confusing and full of joy.  And what I’ve learned the most from this experience is that life is meant for connecting with other people.  So that’s what I’m working on right now.  Not unpacking my bags in some weird, worried place in my mind and just getting out there and living and connecting with people.  Also, keeping cool.  And babying my eyelashes.

Permasmiles and crowd surfing.

I sipped on that sweet chemotherapy cocktail all afternoon yesterday, and now I’m just waiting for that weekend hangover.  Last cycle was my worst, possibly because I fasted as some preliminary research shows it to be helpful in reducing side effects and identifying cancer cells.  Whether it was a result of fasting or not, I felt sick sooner and for longer.  Honestly, I don’t think I came out of the fast properly, but this time I ate my little heart out, as I’m accustomed to doing.  Fasting and I are just not friends.  I’m definitely a Ron Weasley when I don’t eat.  And this cancer is pretty much a horcrux.  Does anyone have a basilisk’s fang hanging around?  Or, like, a super fancy sword made by goblins?

Chemo days are actually some of my favorites.  I kick my feet up, watch this tv, and flirt with the old men while someone else takes care of my kids.
Chemo days are actually some of my favorites. I kick my feet up, watch this tv, and flirt with the old men while someone else takes care of my kids.

So anyway, I kind of got the wind taken out of my sails yesterday as my doctor gave me some unexpected news.  First, let me just say that my oncologist is a very smart, accomplished, and sweet woman.  She just smiles so dang much!  The first time I met with her, it was rather offensive to me.  She rocked her permasmile as she talked me through my treatment plan and odds.  My odds.  Yeah, she smiled through that scary little nugget.  She even gave pointed little giggles before responding to my questions.  I left her office after that first meeting not really sure if my doctor understood the severity of my situation.  I am ALL for a laugh, but this stuff: not funny…unless I make it funny.  Then, it’s funny.

For my third treatment three weeks ago, one of my bffs, Christen, accompanied me.  I warned her of this smiling phenomenon, stripped down to put on a gown, and waited for the doc.  As we waited, we did what all best friends do.  She felt me up, of course. You know, then we had a pillow fight in our jammies.  jk. jk.  Kind of.  I don’t think it counts if the boob isn’t attached to me, right?  See, what had happened was…I took my boobs off and handed her one.  We’re pretty much like sisters, and I showed her my scars too.  She’s the first person besides Josh and my daughters (oh, and a million medical professionals) that I have shown so it felt kind of like another step toward acceptance.

Christen, preparing to be my maid of honor, even in kindergarten.  She never could handle her "juicebox."
Christen, preparing to be my maid of honor, even in kindergarten. She never could handle her “juicebox.”

Aaaaand I’m off track.  The point is that today, when Dr. M walked into the exam room, she wasn’t smiling quite as brightly.  Instead, she informed me that she took my case to the tumor board for the third time at my insistence (I just know that doctors love nurses as patients!), and they decided that I did, indeed, need radiation.  I was not expecting that.  She explained that they reviewed the original biopsy results and basically concluded that, although my two tumors were small, I had an aggressive form of cancer.  My odds of recurrence are higher, and I’m young.  Youth is not an advantage in the case of breast cancer.  Hormones and such.  Dr. M literally told me that they were just going to throw everything they had at me.  Fun.

Except, not really.  Not even remotely what I wanted to hear.  I guess that, now, I am not halfway there.  I don’t know.  We don’t have a radiation plan yet.

I realize that this really doesn’t change anything…just what I know.  I realize that getting radiation is a good thing.  I realize that my God is a big God, and I realize that fear will only stop me in my tracks and rob me of the now.  But that doesn’t mean I didn’t head straight to the bathroom and break down.  That doesn’t mean I didn’t walk into the chemo waiting area looking a hot mess.  Think Britney Spears, circa 2007.  Then, the kindness of the other cancer patients was more than I could take.

I sat down next to Josh and tried to hold myself together, but hot tears escaped one by one of their own volition.  People looked over sympathetically.  People gave me my space.

Then the middle aged woman sitting across from me wheeled away.  No big deal.  I was trying haaard to shut myself down, stuff it back inside, so her movements barely registered with me.  Until she came back bearing tissues for me.

She looked me in the eye, “Here.”

That was too much for me.

I started sobbing into the tissues she just handed me.  More people looked.  I buried my head into Josh’s arm.

“Everyone’s looking at me.”

“That’s okay.”

One final sob.  Then, lock down.

When I was called back into the infusion center a couple of minutes later, all I could do was look at the woman in the pink hat and mutter, “Thanks.”

I know she knew what it meant.

Thanks for acknowledging me.  Thanks for supporting me.  Thanks for knowing that sometimes we just can’t hold it in.  Thanks for understanding this pain.  This fear.  This loss of control.  Thanks for seeing me.  Thanks for being my friend.  And I will call that woman, who I will probably never see again and who I only exchanged two words with, a friend always.

This whole thing is bananas, really.

I mean, in other news, my eyes have become the place where eyelashes go to die.  I can’t yet tell that any are missing, but I can sure feel them practicing their cannon balls one by annoying little one into the pool of my eye.  On the bright side, my brother-in-law pointed out that I have a lot of wishes coming my way.  Score.

Also, I had to have a conversation with Penny last week about why my hair will grow back but not my breasts.  The answer is easy enough if you have a brief moment to prepare, but my initial response to her question contained a lot of “uhs” and “umms.”  I found my way through though.  And I will find my way through this too.  With the help of friends and family.  You guys are rocking it.  And I just can’t keep up with all of the thank yous right now.  I feel like, one by one, you are all carrying me.  Sort of like crowd surfing.  Each meal, each letter, each dollar donated, each ridiculous beard shaved in the name of more donations or promises to run the marathon portion of a legit Ironman race in a prom dress.  A mowed lawn.  Childcare.  A care package in the mail.  A shoulder for me to cry on.  A tissue passed my way.  They are all hands, and you just keep holding me up…until I make it to my brother, Paul.  Then I fall.  True story.

I was once crowd surfing and was dropped hard.  I look up from the floor, and it was my very own brother that dropped the ball…err, me.  Maybe he was tired of seeing so many dudes trying to cop a feel.  Or maybe he’s just short.  But then he hoisted me back up because, you know, I had already lost a shoe.

Yeah, this is totally like crowd surfing.  My loved ones are holding me up, that shoe probably represents my mind, and I’ve been groped more times than I count.

Livin’ on a Prayer.

Real talk: I am a mess.  I  am overwhelmed.  I am drained.  I am struggling.

BUT I am also halfway done.  If I count surgery, and you bet your ass I do, I am MORE than halfway done.  While I am definitely happy to be here, chemo is getting harder so I have my reservations about throwing a halfway done party (mostly because I don’t want to get off the couch).

A few weeks ago, I went to my first young women’s breast cancer group meeting for women in their 20’s and 30’s.  I threw on my pink wig, some cute shoes and hoped that I wouldn’t cry on this first date of sorts.  (I didn’t.)  I went looking for someone who understands, a friend in cancer, if you will.  I have certainly met other women who have been through what I am going through (1 in 8 women will be diagnosed in their lifetime), but each time, I feel like they don’t really understand because they are older.  I’m only 32.  I have two very young children.  Wah, wah, wah.

What I found at the meeting humbled me.  The women there certainly did understand.  It was funny how, at first and for most of the time, even we spoke of hair loss (instead of what’s REALLY bothering us).  We also talked about chemo, surgery, our boobs.  Then the talk switched to children.  There were only six of us, and four of the women hadn’t had children prior to diagnosis.  When those women discussed embryo freezer fees, the risks of pregnancy, the uncertainty, and life plans altered, my heart broke for them, and I felt grateful.  So very grateful for my little girls.

Sometimes I feel sorry for myself because having cancer AND being a mommy is hard, but those women really reminded me of how much I have.  It sucked to have to stop breastfeeding (which was one of the most amazing experiences of my life, truly) on cancer’s terms, but at least, I had that experience.  For three weeks after surgery, I couldn’t hold my baby, but at least, I have my babies.  And on and on and on.

Let me be clear — I’m not saying that I’m rocking motherhood right now.  Quite the opposite, my friends.  Also real talk: this household is out of control.  Seriously, you guys.  I try to remind myself to cut me a little slack, but when I am laying on the couch (again) and my kids are swarming around me and Netflix is churning out one show after another, I feel guilty.  Our old routines are out the window, for sure.  They are being fed, yes.  They are being stimulated, eh?

Poor Alice doesn’t seem to know any different.  At her age, Penny was being read ten books every two hours, took two walks a day, was practicing her colors, numbers, animal noises, penmanship, multiplication tables, and going to day camp for cello lessons.  Or it felt like it.  I was definitely in her face.  The point is that I was mad trying with that kid.  At this point, I wouldn’t hire me to be their babysitter.  If I saw me on the nanny cam cleverly hidden in the belly of a stuffed giraffe, I would fire me.

“You rarely got up from the couch.  You let the baby play with a roll of toilet paper rather than read to her or sing ‘The Itsy Bitsy Spider’ for the 26th time.  You let my three year old watch two and a half hours of tv, gave in to all of her fits just to quiet her, and when she begged you to play dolls with her, you told her that her daddy would when he got home.”

A roll of toilet paper is a good babysitter, yo.

We may have been a little too lax with teeth brushing lately.
We may have been a little too lax with teeth brushing lately.

But really, I am having all sorts of anxiety and mommy guilt.  I am also having all sorts of stomach pain and exhaustion.  It’s a losing battle.  Except the one against cancer.  That one I plan on winning.

I guess what I’m saying with is threefold.

1.  If you are stumbling around this blog because you are going through something similar, I feel you.  This is not all pink ribbons and sisterhood.

2.  If you see me out with my kids and my almost four year old is acting a fool and not listening one bit (as is the norm lately), cut us some slack.  I am too tired to be doing this the right way, and Penny’s world has also been turned upside down.

3.  I couldn’t be more aware of how lucky I am to have this little family.

One of the girls from the group meeting recently finished her chemo and messaged me some encouraging words about reaching the halfway point.  She said that she adopted this as her halfway there anthem.  I love it.  I am totally livin’ on a prayer (but it does make a difference if we make it or not).  Plus, Bon Jovi’s hair makes me feel okay about being bald right now.

My Great Escape.

Okay, you guys, chemo #3 was last Monday and its nasties are well underway.  Plus, I fasted for three days.  You did not want to be my husband for any of those days.  I may or may not have tried to get everyone around me to describe every meal they were eating.  But I will get to all of that super fun stuff next time.

Right now, I am on a mission. I’ve been going back and forth about this, but I really only plan on having cancer this once.  (Let’s just pretend it was in the plans.  In which case, do not come to me for any life coaching.  Uh, duh.)  You see, I try to keep positive, but truthfully, I could really use something to look forward to.  So I’m MAKING A WISH!  For real, you guys.  And I need your help.  First, I’ll lay it on you.

Hansonbanner

Boom!  Many of you are not surprised, I know.  Those of you near and dear to me know of my undying love for Hanson and the immeasurable joy they have brought to my life over the last 17! years.  (Wow, our relationship can almost vote, or get a tattoo, or, like, pawn stuff at a pawn shop while buying a lottery ticket and opening a call for jury duty.)  For you others, I will try to explain – something I’m not actually sure that I can do.

When it comes right down to it, Hanson is home to me.  I know you may only know of “Mmmbop,” but they didn’t stop there and neither did I.  I feel like we have grown up together.  There have been the highest of highs — like the time I saw them play in the middle of the Atlantic ocean under the moon and stars until 3 AM — and some pretty funny lows — like the time I left in the middle of a show because the set list was making me mad and I was so hungry I was “seeing” cheeseburgers.

Also, I'm not a creepy fan at all.  It's totally normal to take your picture with someone who doesn't know it's happening, right?
Also, I’m not a creepy fan at all. It’s totally normal to take your picture with someone who doesn’t know it’s happening, right?

There are songs that immediately make me feel 16 and just so happy (Hello, “Minute Without You!”), and there are those that have helped me through some pretty tough stuff.  Like when I didn’t know how to deal in high school, or when my mom died.  There is a song that my daughter is named after (along with “Penny Lane”), and there are even songs that I don’t like.  There are songs that I’ll never forget hearing for the first time and some that I will always jumble their lyrics.

And the shows.  Around 40 shows in the last seventeen years.  With my mom, with my best friend, friends I don’t see anymore, my husband, my brother…  It’s like stepping into an old friend’s home and picking up where you left off.  And you just know it’s going to give you what you need.  And make you smile (and dance).  And reconnect you to a part of yourself that is only for you.   Maybe it’s the Cardinals for you.  Or hunting.  Or crafting.  Or a certain movie or video game.  Or maybe you understand because you feel the same way about The Cure.  I don’t know.

Hanson Collage

What I do know is that these guys make me straight up happy, and on this journey, having something to look forward to after each chemo session has made such a difference.  Whether it has been a family birthday party, dinner with friends, fireworks at my in-laws’, or a trivia night with my best friends, it’s what I look forward to when I’m not feeling so hot and, honestly, feeling a little left out of the world.  And let’s face it, in the last year, my husband and I have brought another new life into this house (cue the Lion King music) AND are fighting this crazy cancer battle together.  We could use a little refresh (with Taylor Hanson on my other arm, of course).

So here’s what I have been dreaming about.  It’s five days and four nights worth of sun and ocean and Hanson performing at night.  I want it bad, you guys.  Picture me smiling through the rest of my chemo.  Picture me throwing wigs in the air and flashing prosthetic boobs and chest bumping my husband.  I need this.

So I’m not really sure how to make this thing happen so let’s just try to get this thing into the hands of my boys.  Or any of your ideas are welcome!

https://twitter.com/hansonmusic

www.facebook.com/hansonmusic  <—I can’t figure out how to post something to their page though.

Share the crap out of it.  On your page.  On their page.  Everywhere!  It would seriously make my day.  Get your dogsitter’s aunt’s best friend’s mailman to share it.  Get your first grade teacher and your favorite barista to share it.  I think I’ll going to go ask my grandpa to open a twitter account so he can share it.  Let’s just somehow make this happen because, in my book, cancer sucks and Hanson is awesome.

The Bald and the Beautiful.

Ladies, you know what’s better than taking your bra off at the end of a long day?  Taking your wig off the moment you walk through the door.

I’m just going to let that be a paragraph all on its own.  I’m not sure what else to say about it because I know you’re feeling me, right?  Instead, I’ll tell you a little story of hair loss.  (Oh yes, get excited!)  Actually, it’s a pretty short story.  It goes like this.  Chemo started making me lose my hair.  It happened gradually but steadily until, one day, I decided to take a shower.  I knew that I was losing a lot of my, at that point, very short hair when I had to clean the drain four times just to get water through.  It wasn’t until I stepped out of the shower and saw my poor (loving, ridiculous, empathetic, mouth agaping, maybe should be working on his poker face–I’m not really sure what you want here) husband that I realized it was time.  I foolishly looked into the mirror.  Uhh yeah, it’s time.

“No big deal,” I said to myself.  “I’ve known this day was coming for almost three months.”

So I casually texted my hairstylist aka Aunt Toni and set a time to shave it the next morning at her shop.  “I got this.”

Except I didn’t got this.

I put on a hat, and I’m going to say that I was “pretty cranky” for a few hours until I called my aunt at 8 o’clock in tears asking her to come over asap, stat, right now! to shave it.  Of course, she did.  We even let Penny in on the action.  I wish I could say it was to make it less traumatic for her, but the truth is that it was because she was awake, there, and thought it would be fun. (Please excuse the mess that is my house.  Ain’t nobody got time to clean right now.)

20140709_204525

There you have it.  Until the next night, when my other cousin, Michelle (we have a talented hair family), came over and razored it because my head looked a little more like a globe with continents of hair, and I didn’t want Christopher Columbus discovering anything on my head.  IDK, just go with it.

2014-07-10 19.47.32

Things I’ve learned thus far about being bald:

It is a cold world out there, and I have to wear a hat at night.

Showers only really take three minutes.

It’s super fun to sneak up on your husband and pretend to be Gollum, precious!

People really do want to touch a bald head, but it feels just as awkward as it did when they rubbed my pregnant belly a year ago.

People really do look at you like you have cancer now.  (<—which is blowing my mind because, theoretically, the cancer was removed with surgery.  When I really did have cancer, I didn’t know it and looked just as healthy as the next guy.)

My husband reported that everything I say sounds/looks just a little meaner.

My kids don’t care one bit.

2014-07-15 20.32.56

As hard as this is to go through with two very little girls, my daughters continually put things into perspective for me.  They really, really didn’t and don’t care.  I thought it would take some adjusting to, especially for Alice, but it just didn’t.  She looked at my bald head for two seconds, and then locked into my eyes like she could see into my soul.  That sounds super dramatic, I know, and my brother, Paul, is probably shaking his head at the screen right about now and my other brother, Josh, is totally feeling me.  Still, I felt like no matter what, no matter where, no matter how, she and I were meant to be together.  And she knew it.  Penny too.  She just doesn’t care.

On a lighter note, here are some things that I am playing around with.  I’m not so sure about the scarves.  They kind of scream “sick” to me (and apparently, I can’t even look at the camera in one).  I think my favorite look is the pink wig, and I’m thinking about getting a blue or teal one.  And I’m definitely on the hunt for some cute beanie caps.  Also, so sorry for the awkwardness on display.  I think I am just over the age limit for feeling comfortable taking a bajillion (or even four) selfies on the daily.

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