The Draugelis Blog

So.  We did this thing.

Mom flew out, the sitter arrived, and then Mike, Mom and I went to Penn.

Mike and I posed awkwardly for pics.

I’m smiling, but not sure why.  The whole thing was so bizarre, I guess, that laughing is my defense mechanism.   “OMG CHEMO!  So funny, right?”  Yeah.  Breast cancer is a real hoot.  HA HA…ha.

Actually, what I do find hilarious is that before checking in for chemo, we snapped pics for an ANMJ article next week.  Not there’s dedication to a cause, LOL!  (Or just a crazy lady.  You pick.)

And then, once we got in there, met with the oncology nurse and were escorted into our private chemo room….things got a bit worse.

The day before chemo, I have to start taking steroids called Decadron.  These little pills taste awful, have a terrible after-taste and make me feel revved up.   During the day I can keep myself busy (or walk like an Olympian or clean my house like crazy-Nicole when pregnant), but during the night they make for fairly terrible sleep.  The morning of chemo, in addition to my Decadron, I also have to take a pretty powerful anti-nausea medication called Emend.  (Yay for this, BTW.)

Once you sit down for chemo, they first fill you up with a ton of drugs to help ease the chemo side effects.  These drugs are all given by IV:

1. Benadryl

2.  Pepcid A/C

3. A long-lasting anti-nausea medication Alexi? (similar to Zofran).  This bad boy is supposed to last three days.

At some point, they also want you to swallow two more Decadron steroids.  Apparently, allergic reaction to Taxotere (one of the chemo drugs) is pretty common, and the steroids are supposed to help (along with the Benadryl).

Well.  Oddly enough, in this entire cocktail mix…it was the Benadryl, the damn Benadryl, that was – by far!! – the worst.  (And they only gave me a half-dose.)  After the Benadryl hit, there was no more smiling or joking or laughing and I sure as hell wasn’t going to be “popping the Decadron when you can!”  Uh…NO.  Luckily, Decadron can also come by IV.

The Benadryl left me feeling a tiny bit tired, a tiny bit loopy, and a whole lot nauseated and shaky and weird.  I was in total misery.  Not knowing what else to do, I took an Ativan (anti-anxiety, anti-nausea, makes me sleepy).  Twenty minutes later, I was…better?  Not great, but I could get through the rest of the treatment.

At this point, I only had two more drugs to go:  The chemo. (Oh, that’s all.  Snort.)

First up was Taxotere.  This chemo drug is a derivative of Taxol.  Ironically, my mom was part of the original Taxol study back in 1996.  That study is a big part of the reason I’m being saved from having to take the chemo drug Adriamycin (aka the “red devil” and super harsh and scary on so many levels.)  So thank you for that, Mom.

But getting Taxotere for the first time is a strange thing.  Because of the possibility of allergic reaction, the nurse sits – and stares – at you for the first 15 min or so.  Apparently, if you are going to have an allergic reaction, it’ll start when the first few drops hit your system.

Here’s why an allergic reaction REALLY sucks:  They don’t necessarily pull you off Taxotere.  They slow it down,  try adding more steroids and more Benadryl.  GOOD LORD.  If ever I could make myself NOT allergic to something, I sure was trying now.  “C’mon body“, I thought.  Pleasepleaseplease.

After about 15 min a bell rang.  “You did great!”  said the nurse.  “No problems!”

I sat there for another 45 minutes, while the Taxotere IV completed.  Whew!

Lastly?  Cytoxan.  Now, if I’m going to get nausea, it’ll be from the Cytoxan.  However, the process of getting Cytoxan is a no big deal, other than the weird, slightly metallic taste in my mouth.

And that was it.  We waved goodbye, smiled at everyone and walked out.  I felt weird and tired and weird and forgetful and weird and wired.  Did I mention weird?  And so many people I’ve met who have gone through my exact same chemo treatment (4 cycles of TC, three weeks apart) have ALL warned me that I should expect NOT to sleep the first night post-chemo.  There’s just too many steroids in your system for sleeping.

Mike was ready to pull an all-nighter with me.  That man is my rock.  However, right after we got home (around 4:30) I crashed.  See?  Too much Benadryl for this sensitive baby.  I woke up around 7ish, only to find that mom was alone with the kids (having a ball) and Mike had actually gone to the school for Parent’s Back to School Night.  Wow.  Talk about feeling completely taken care of.

But now I was restless.  So I headed over to the school, hoping to catch the end of it.  I was actually feeling…fine.  Really!  A little tired, a lot jazzed from the ROIDS…but….fine.  I walked into the classroom to a lot of dropped jaws, which was fun.  “Didn’t you just have…chemo??  Like…today?”  Mike hurries over, “Babe?  Are you sure???”

I was.  So we hung out, had a great conversation with the teacher and a few of the other parents, then Mike and I went for a long walk.  And I’m fine.  It was shocking, really.

By the time we got back to the house, I was starting to feel hungry, and I’m enough of  a “delicate flower” (the nurses’ words, not mine) to realize that hungry = nausea sometimes.  So I had a bowl of my self-invented “cancer cereal”  (cinnamon puffins with rice milk and a boat load of ground ginger sprinkled on top)…and was…fine.  Then we went to sleep.  Sleep!!  I didn’t even need an all-nighter!  (Actually, I’m pretty sure I took an Ativan with my “cancer cereal” so there you go.)  I did wake up at 5AM, but I’ll take that as a win.

This morning, I’m still doing surprisingly well.  I just took my Decadron (steroid) and my Emend (anti-nausea) and will go for a walk, and at some point, head back into the hospital for my Nuelasta shot.  This shot will help boost my white blood cell count back up to normal before my next treatment in three weeks.

So.  I’m feeling pretty tired, but generally OK.  And if I’m going to have nausea, it’ll be today and/or tomorrow.  But so far, so good.  Day 1?  Not as bad as I thought.  And if they let me drop the Benadryl….it’ll be even better? I can only hope.

xoxo

S

Two months ago, my breasts were removed.  Last month I got new ones.  Last week Raines started school.  Tomorrow, I get my first chemo treatment.  And by October I will be bald.

But for the most part, life goes on as normal.  Except when it doesn’t (and I’m guessing tomorrow will fall into the “DOESN’T” category).  It’s like one day I blinked and found myself in someone else’s life.  It’s bewildering and disorienting.  How, exactly, did we get here?  Mike keeps joking that we randomly woke up in a Kafka novel.  I’m guessing that makes me the bug. (Ha!)

But I’m trying to come to terms with being a Cancer Patient (caps intended).  Right now it feels like an identity.  It’s like when you first become a mom and it messes with your head and maybe your sex life goes to shit for a bit or you struggle to define your new relationship roles and make peace with your new body and just REMEMBER WHO YOU ARE DAMMIT through the sleep deprivation and the incessant needs of a new baby?  Yeah.  It’s kinda like that all over again…but without the delicious new baby.  

And frankly, I’m having trouble identifying with most of the breast cancer culture.  The whole warrior woman, I will fight!! rhetoric I find…tiring.  I don’t get it.  I don’t feel like a warrior, I don’t want to race for a cure, I don’t want to wear a pink ribbon (or anything pink for that matter), I just want it all to GO. AWAY.   Warrior?  Snort.  Hardly.  I’m a ballerina, for crying-out-loud!  It’s blush, not pink.  I wear t-shirts that say “Army of Lovers” and if I’m going to kill anything, it will be with kindness.   Like my Mama taught me.

At my last oncology appointment – the one where they help prepare you for your upcoming chemo – I was a flight risk.  I was sitting there in the waiting room, looking at all of the women in their head scarves and earrings and could feel myself start to sweat.  I’m not one of them!!  They are warrior women!  And this is all bullshit!  BULLSHIT!  I looked at Mike.  “Take me away from here” I whispered.  And then they called my name.

I think nurse Robin (who will administer the chemo) could tell I was ready to bolt, because she immediately starting talking about my chance of cure.  Cure, as in no more cancer.  And the thing is…this is it.  My one shot at a cure.  Because if the cancer ever comes back, the discussion won’t be about a cure, it’ll be about maintenance. So warrior woman or no…this has to be my path.

When we got home from that appointment, there was a package waiting for me, sent by a friend.  It contained a card that read, “Cancer Is An Asshole” and a bracelet.  The bracelet was engraved with these words:

Fight Like a Girl

Now this?  This I can do.  Come tomorrow, I’ll be wearing my bracelet and reminding myself to fight like a girl.  (Which, as far as I can tell, will consist mostly of taking my meds on time and keeping myself from BEING CRAZY IN GENERAL.)

We will see.

Mike came bustling into the room, all sweaty, just back from his morning run.  I’m propped up on the bed, grumpy.  Mike starts fiddling with my pill bottles.

“Morning, Babe!” he says, handing me a pill.  I glare back at him.  “Water” I remind him, ungraciously.

“You OK?” he asks, pausing to give me a look.

I sigh.  “Last night I had a dream that you cheated on me.”  Mike rolls his eyes.  This annoys me further.  “AFTER I went through chemo AND tamoxifan.”  I stare at him.  The cheating bastard.

“That dream sucks” he says, handing me another pill.  I’m getting pissier by the second.  He is not nearly remorseful enough for his fake-cheating.  I start again:  “I can’t believe you wou–”

Mike cuts me off, briskly:  “Babe, LOOK.  You own my heart and my dick.  The. End.  Now take your stool softener.”

And that’s where we are.  It’s almost 14 years later, and I still crazy-love this man.

My surgery is over, my drains are out.  The surgery itself wasn’t a big deal, the recovery has been…awful.  Soul-sucking, actually.  In the last week or so since the surgery, I’ve routinely cried from pain. It’s the kind of pain that is always present…and isn’t localized to where I thought it should be.  I’m just in almost constant pain.  That fact kinda blows me away.  Drugs help, obviously, but unlike my c-sections, I don’t see myself weaning off the drugs anytime soon.  Trust me, I’ve tried.  I’ve had to lower my own expectations to literally rock-bottom levels.

Getting the drains out really helped.  I had one in each side, and they were collecting the fluid that was accumulating in the pocket the tissue expander is trying to create.  The tissue expander is the first part of reconstruction, and is stuck behind the muscles in my chest.

You know those really awesome block sets that preschools have?  Unit blocks?  The blocks that are made of really heavy wood and come in various sizes?  We have one of these block sets and the boys were playing with it and I picked up one of the flat square ones and thought, “I’ll bet this is what the tissue expander looks like.”  Boob blocks.  Blocks for boobs.  The first step in total reconstruction.

My surgery team, by all accounts (including major nationwide publications), are top-notch.  And they did a great job.  Mike said they came out of the OR literally beaming with joy.  “You are going to be really happy” they told him.   At my post-op checkup a week later my breast surgeon took one look at my hacked-up block boobs and clasped her hands in delight:  “This!” she cried.  “Gorgeous!  Yes….” she came closer, prodded the stitches a little, “…this is looking really quite nice. You will have a beautiful result.”

Even the home nurses – who come periodically to check on me – have gushed over the gorgeousness of my block boobs.  They are all very genuine in their praise.   One even took down the names of my surgeons (the others already had heard of them).

What I find so hysterically funny about this whole thing is this:

I look like freaking Frankenstein.

On nights when the drugs have kicked in, I find myself staring topless into the mirror – often crying, but sometimes giggling.  “GORGEOUS!”  Mike will cry.  “SO supple!”  I strike a pose.  “Congratulations are definitely in order.”  I tell him. “Not everyone gets to walk around with these.”

It’s a whole other world, this breast cancer world.  I barely speak the language and I certainly don’t know how to dress.

My diagnosis, as far as breast cancer goes, isn’t all that serious.  Stage 0.  Seriously, zero.  That’s about as early as it gets.  According to the doctors, I am “lucky”.  Unless, I imagine, they find something worse in the tissue biopsy after the mastectomy.  Then perhaps they’ll stop using that stupid word.  Lucky.  “It could be worse!!!” they say.

Which…OK.  It really could be worse.  I don’t know why I’m doctor-bashing.  Actually, I do:  they’re an easy target.  And frankly, I’m just pissed.  I’m pissed that I’m facing a life-changing surgery in a week, followed by months of reconstruction, and surgeries every 10 years or so FOR LIFE.  And hopefully no chemo, but we’ll see.  Bastards.

Yesterday I read that doctors are now prescribing tamoxifen to prevent breast cancer from starting.  I felt like punching someone.

In truth, none of this matters.  My cancer was found so quickly after I stopped nursing that there was no time for prevention.  And I was still thinking about maybe another baby, so I probably would’ve refused medication anyway.  I mean…37.  Thirty-freaking seven!  I simply had no idea.  I had been nursing – almost without a break – for the last five years.

Breast Cancer.  Still so weird.

I was hoping, though, that if I ever faced cancer, I would do it with more grace.  I find myself surprised by my totally misplaced anger.  In the first few weeks after the diagnosis, a friend called to say she was “so sorry” about my cancer.  I almost told her to SHUT UP.  Instead I took a few deep cleansing breaths – the issue, obviously, was me, not my amazing and loving friend.

This anger pisses me off.  It’s terrible, really.  I find myself snapping at my boys, being unreasonable.  Such a terrible way to deal with life.  Which, at the end of the day, is really what this is:  life.

It’s just life.

Part of the issue, I think, is the waiting.  We’re waiting for surgery,  then waiting to hear if I need chemo.  At some point, the reconstruction process will start, and another (smaller) surgery for the implants.   If I’m lucky, I’ll be done in 3-4 months.  If not, this shit could stretch out into next year.  The waiting is the worst.    The unknown feels terrible.

Perhaps I would feel differently if my diagnosis was truly terrible.  Perhaps then the unknown would be more comforting than reality.  I don’t know.  But I do know this:  even a “lucky” diagnosis is making me crazy.

The biggest challenge has been controlling my own thoughts.  It’s hard not to see everything as a sign.  (And I don’t believe in signs.)  I see a bird flying and think that must be what death is like.  Pax blows kisses and shrieks ‘BYE MOMMY’ and my stomach drops.  I read to Raines and think, “will I ever see him read?”

My doctors say YES, ABSOLUTELY.  And I know they are right.  But still…if I’m not careful, I end up living in a world of my own making.  But it’s a terrible world where the breast cancer kills me.  A terrible world where I can’t stop thinking Terrible Things.

Mike wants no part of this discussion, and I don’t blame him. He is not nearly as crazy as I am, and is much better at living in the, uh, actual world.  Not the terrible one of my own making.  These things in my head, all these terrible things are crazy, they are self-defeating…yet they feel, at times, so very real.  So real sometimes I can’t take a proper breath.

So I call my Mom.  My crazy comes from somewhere, right?  And besides…Mom gets it.  She gets it.  In fact, she’s lived through All The Terrible Things.  She’s lived through a diagnosis of Stage 3 breast cancer, and a prognosis of only 5 years to live.  She’s lived through a mastectomy, chemotherapy, and an ovarian cancer scare a few years later….she didn’t need me to say what All Terrible Things were, she already knew.

“Mom?”  I whispered when I got her on the phone.  “It feels like….it feels like…..I’m having a premonition.”  I told her about the birds.  About reading to the boys.  She interrupted me:  “Have you calculated how old the boys will be when you die?  Still in elementary school, right?”

I was quiet.  But in truth, I had.

“At some point” she continued, “you came to a moment of acceptance, right?  A moment where you go ‘I’ve had a good life.  It’ll be OK.’  Right?”  she asks.

And there it is.  The most terrible thing of all.  The one where you are sure, so sure that you are about to die that you start to try and accept it.  Accept that your children will be OK.  That your husband will go on.  And they will, but this is truly a Terrible Thing.  It’s a terrible, shameful thing and how did she know?  How did she know the most Terrible Thing of All?

“I remember, honey” she says.  “It means nothing.”

And then I sob in relief.

At some point I ask incredulously, “you calculated how old we’d be when you died???”  “Yup” says Mom.  “You’d be out of college, and Scotti would be out of high school so I thought, OK.  That’s pretty good.”

And then we both crack up.  It’s not funny, not really, but so crazy that it is.

My sense of humor is becoming a Terrible Thing as well.

Later Mom shared a quote from one of her best friends.  To date, it’s the most helpful thing I’ve heard:

“Teene” said Mary.  “Please tell Shana that she can’t believe everything she thinks.”

And just like that, the weight lifts.