CT Scans and Potty Training. Gonna Be A Good Week!

A cancer diagnosis will introduce you to a lot of weird things. A new language, being one of them. Cancer involves a lot of strange vocabulary and phrases and confusing acronyms and abbreviations. 

When I first started poking my newly diagnosed head around online cancer forums, I found this somewhat bewildering. I would literally have to check Google 16 times just to get through a brief feed on breast prosthesis options. (�what does MBC mean?� �what does IBC mean?� �what does RADS mean?� Oh I give up.)

It was like installing Instagram on my phone ages after everyone else already had. Everything was so uncomfortably foreign. You become the geeky newbie in a classroom where everyone else is effortlessly hashtagging and making those weird boomerang clips. It takes a while to become fluent. But, eventually, you get the hang of it. ( I still don�t really get twitter, so if anyone�s willing to lend me some tips I�d be much obliged.)

#Ohmygoodness #WhereIsSheGoingWithThis? #WhyGodWhy #IsThatAllThereIs #PeggyLeeForeva

Ahem. I don�t know quite where I was going with that. At any rate, there�s a phrase that�s tossed around in cancerland called �scanxiety.� It�s exactly what it sounds like. Anxiety about scan results. In case you needed it spelled out. Paul is getting a CT scan in two days to check on how his tumors are behaving, and we�re slightly anxious. Just a tad jumpy, I�d say. On the nervous side.

It�s been like this ever since the day the shit hit the fan (for the second time.) So much is hinged on Paul�s scan results. They determine our next steps. They determine if our life is going to continue as is for a little while longer, or if it�s about to get a whole lot harder. 

We always want good news, duh. But we especially want good news this week. I don�t know if we can take more bad news. It would be pretty crummy of his tumors to be like �we see that your wife is having surgery in 2 weeks. Thing is, we�ve felt rather neglected lately, so we�re going to freak the hell out for a while. No hard feelings.�

Um, yes hard feelings! (>_<) Those dirty weasels.

So prayers, please. If you're the praying type.

You know, cancer has made doing a lot of things harder. Like being the mom I always thought I would be. Nothing like a visit to the pediatrician to make utterly clear how much I am slipping in that department. When the nurse asked how potty training was going, I sort of stammered/lied: �she um, sits on the potty sometimes?�

�OK. We�ll just put down that potty training has started.� One bold-faced lie typed into Ingrid�s chart, but:

And so we�ve finally resolved to go for it. My hope is that Ingrid is a fast learner and she can master the potty in this 2 week interval before surgery. Is that a pipedream, moms? I�m used to disappointments, so the pressure is minimal.

Tomorrow I start physical therapy. In actual reality though, I should be starting therapy therapy. Like with a shrink. But a blog is pretty much exactly the same thing, right? RIGHT??

Here's to another happy week of appointments! #cancerlife #cancerwife

hahahhahahaaaaaha ha ah ha.

Yes, Hi. I'll Take Another Mastectomy and a Blood Transfusion, Thanks!

I was not in a good way last week. This Monday didn't help (does it ever? What a jerk.)

We kicked things off with my (super genius) plastic surgeon. He filled us in on some things. Like the terrible (but super genius) stuff he is going to do to my body.

Paul: "I don't know if it's my super low hemoglobin or the description of your surgery, but I felt really lightheaded in that appointment."

You and me both, dude.

I don't do gore. Put on an episode of Game of Thrones and I see maybe 20%. The rest I mostly spend with my face covered, shrieking, "no no no no no no no no no stop stop stop stop stop stop." But surgeons don't mind talking about blood and muscle and great green globs of greasy grimy gopher guts. It's their thing. They like  it. And thank God they do.

I'll spare you the parts that had my head spinning. Basically, this is what's going down on Monday September 11th:

• My surgical oncologist will remove the implant in my right breast.

• He will cut away loads of tissue and chest muscle. How much exactly will depend on what the pathology tells him. Either way, when he's finished there is going to be a massive "hole" where my breast once was. This hole goes beyond where my breast once was, in fact. He drew on me with purple pen to mark just how massive this hole is going to be. It made me weepy the next morning while I was getting dressed. 

                                      

• Here's where things get interesting: my plastic surgeon will have this massive hole to contend with, right. He can't leave me like that, right. He has to find a way to close me up. There are a few ways this could go:
  
  PLAN A. Best case scenario: he's able to stretch the skin over my chest and stomach to meet and close the hole. This would make everyone very happy. It will look ugly, but hey, no option at this point is going to be pretty. There is one tiny little hiccup with this approach, though -
  
  Dr. S.: "I don't know if you're aware of this about yourself...but you are really thin."
  
  One instance in life where this does NOT benefit my health! I don't have a lot of extra skin to work with, which complicates the closure. Thanks to Ingrid, the skin over my tummy is a little more pliable, but you can only stretch skin so far. Which is why we have...
  
  PLAN B. If he's unable to seal me up with what skin is left on my torso, he'll turn to my thigh for a skin graft. For whatever reason, this is the part that made me feel like passing out. The problem with this plan is that the graft may be too thin to withstand radiation (which I will need.) It could end up as a singed & blistered mess, prone to infection. And so we turn to...
  
  PLAN C. If that doesn't pan out, he will take a chunk of my latissimus dorsi (lowerback-to-armpit muscle) to patch up my front. OR he might combine PLAN B with PLAN C to ensure a thicker graft that will be protected from radiation.

So you see, there are options. We like options, normally. And yet. It's the uncertainty of the final outcome here that sets my teeth on edge.

When I woke up from my first mastectomy, I was met with good results and a happy surprise: implants are already in place! No need for expanders! Will it be champagne or pink wine, m'lady? 

When I wake up from this 2nd surgery, well. It's anyone's guess. 

Plus. That thigh slicing bit. *shudder*

Paul: "The part about slicing your thigh made you sick?! That's the least of it. What about all that other rearranging he might have to do?? He was like 'I'll just flip this muscle sideways, then stretch this one over, then turn this part upside down, pull it to the right, to the left, up, down, left, right, take it out, put it in, flip-flop, flip-flop, flip!!!"

Aaaaaand this whole cancer still being in my body thing - Uncool. I try with all my heart not to think about it spreading. But I'm no magician. My brain goes where it wants to go. Sometimes where it wants to go is a dark and scary torture cell. It's not the brightest.

In the meantime, I've started taking Tamoxifen, an "anti-estrogen" pill that will help slow the growth of breast cancer cells. (My particular cancer feeds on estrogen.) The side effects are fun! It's like going through menopause! (hot flashes, mood swings, nausea, low libido...) Fun!

And Paul's wooziness? NOT just a reaction to all this talk of slicing and dicing. It turns out (surprise, surprise) his hemoglobin had dropped to 7.1. (the normal range for men is 13.5-17.5) Low hemoglobin is sort of his thing. That and making a killer White Chicken Chili. But White Chicken Chili doesn't make you short of breath. It doesn't make you so fatigued you can hardly move. We love White Chicken Chili. We don't love low hemoglobin. Quite frankly, it sucks.

Because of his low counts, Paul spent upwards of 7-8 hours getting a blood transfusion two days ago at Roswell. Usually, these are accomplished with zero complications. He had complications. It's not been our week (year?)

First, his mediport has been a finicky pain in the arse lately. It refused to cooperate again, so the nurses had to give up and go with a vein. Way to be a team player, mediport.

Second, his temperature spiked during the transfusion, so Paul had to sweet talk himself out of a hospital stay. (It went back down by the time he came home, phew.)

Third, his intestines were feeling the pain yesterday. I don't think I need to elaborate on this point.

No more bad news. You get enough of that on TV.

After convalescing at the "Hall Bed & Breakfast" (AKA my dad & stepmom's digs) for almost a month, I am finally well enough to watch Ingrid solo and carry laundry upstairs. So we've moved back into our house in Buffalo, a step in the right direction. I wish I was able to express how thankful I am for their care and hospitality. (I mean, guys, we're talking Tim Horton's. Every morning.)

"A nap? Seriously, dad? Don't make me laugh."

This was the SECOND time we've recovered at their place (Paul's last surgery in 2014) and I can say without reservation if you need somewhere to recuperate, this is where you want to be doing it. To my dad and Linda Mary: thank you for housing us, feeding us, and enduring Trolls on repeat.

Got that sunshine in my pocket...

Not to Bum You Out on a Friday, But...

It's been a not good week.

I've stalled on this post for a couple of days now. I didn't want to write it. I had to let the thoughts swirl around my head for a bit like glitter suspended in a snow globe before they settled into a more decipherable pattern. Also, I needed to be able to type without tears blurring my vision (oy vey). I can do that now, so no more dodging the subject.

I got some bad news from my surgical oncologist on Tuesday.

After quickly checking on my incision sites he sat with his head down and said, "We need to talk." (up there with "I want a divorce" and "we're out of cheese" as one of the most stressful 4-word sentences in the English language.)

WHAT DO YOU MEAN WE NEED TO TALK?! What is there to talk about aside from how I'm winning at this whole mastectomy business and look I can almost raise my arms above my head and could you excuse me for a minute because I'm going to go throw up now, thanks.

"I've been dreading this conversation. It's not something I could tell you on the phone."

"OK."

"We got the pathology back and I'm afraid the edges tested positive for cancer."

"OK."

"I'm going to have to reoperate."

"Oh Kaaaaaay.... Oh. What?"

To put things plainly: the pathology indicates there is STILL cancer in my body. It's microscopic, lurking in my chest muscle, beyond the mastectomy lines. My surgeon needs to perform another  full mastectomy on my right side, removing even more tissue this time around. Reconstruction, at this point, will most likely not be an option.

At some point in the discussion (the bulk of which I spent stupefied, stuttering "ok, ok, ok...") I chanced a tearful look at Paul. Can we all just agree that seeing your husband with his head in his hands, racked with sobs, is just the worst? Yes Liz, they all said in unison. It's the absolute worst.

It's a wonder I retained as much of that conversation as I did.

And I was doing so well! I was healing beautifully. I was pleased with my reconstruction, and I was finally feeling like a whole person again. I was arriving at confidence and comfort in my new skin.

Now I feel rather like I've been handed the lottery only to have it retracted a few weeks later.

Or I'm the mistakenly crowned Miss Universe in that whole mixed up debacle. So sorry, but we'll be taking that tiara back, sweetheart. Psych! 

On top of the world one minute. Fist to the gut the next.

Before this bloody appointment, I was beginning to feel well enough to resume my primary role as caregiver. An important goal because my family needs me to not be sick. My family needs me to get a job and potty-train Ingrid. I have no room in my life for cancer anymore. It needs to go away.

I won't lie. I sulked for a full 48 hours about things. Still a bit sulky, really. It's just the working stuff out in my brain that takes time. It's no easy task, assigning meaning and clarity to all of these ugly feelings. My brain will get there, eventually, churning them out piece by piece.

Just not today.

That appointment was only one of four this week (not to mention an hour-long visiting nurse session yesterday). I am spent.

For the record, I did have an entirely different post lined up for today. One that didn't revolve around me, me, me. I'm not the only one with cancer in this family, after all. An update on Paul should be forthcoming, I promise.

I Challenge You...to a Staring Contest!

Remember when you were six, hanging off of the front of the grocery cart and your mom would hiss at you to "STOP STARING at that poor old man! It's rude! That'll happen to your teeth too, buster, if you can't learn to be polite so STOP. IT. NOW."

I have become the old man in this scenario.

What? Oh. Yes! I still have my teeth! Good heavens.

What I mean is that, over the last several months, I've become the spectacle that draws kids' eyes in the grocery store. I am the oddity you tell your kids not to gawk at.

Believe it or not, this was a hilarious revelation to me. Paul and I laugh about it all the time. Since I'm not super sensitive about being hairless, I find this harmless interaction almost flattering. I am bizarre enough that small children feel compelled to study me further! I have become interesting to kids!

It's great because we've all been there - usually as either the flustered mum or the transfixed toddler, of course. But then, I'll bet you can name at least one time you've been stared down by some mangy pipsqueak. Kids can't help themselves. They shouldn't, even. I look hilarious without hair.

So, stare your hearts out kiddos! I'm probably just going to ignore you. And maybe smile.

Shyly. At my feet.

My New Cancer Chic: Adjusting to the "Sick" Look

First, I'd like to thank all of the new visitors who've popped by this blog recently. Thank you for your kind words and your encouragement! While my introverted self is ordinarily averse to unexpected house guests ("Behind the sofa. Quick!"), this blog is an exception.

"Introverts Unite!" (CC BY-ND 2.0) by JoeInSouthernCA

As Susan Cain (author of Quiet and co-founder of the Quiet Revolution) points out: introverts love to communicate via social media. And as my husband points out: my fanaticism for Cain borders on kooky-dooks. I have no defense. She speaks to my soul. Any fellow introverts in the house? Get yourself a copy of Quiet, please do. Every page will have you fist-pumping in elated self-validation.

Since I grumbled about them ad nauseum in my last post, it gives me great pleasure to announce: I am now footloose and drain-free! I've also given the heave-ho to my restrictive, dowdy surgical bra so I can finally resume wearing normal-people clothes. Big strides, folks. Aside from the sliver of gauze peeping out of my tank top straps, the average Joe could never detect I'd just had a mastectomy. 

It's possible I'm making too much of something that's based solely on comfort and vanity. We are, after all, talking about a disease that claims more than 40,000 lives in the U.S. each year. That is a staggering figure. And yet, the topic of physical appearance occupies a significant chunk of real estate in the breast cancer blogosphere. (Is that an actual term people use? It sounds smart-ish.)

In the spirit of full disclosure, I feel like a total hack for making my looks the star of this post. I understand that maintaining a positive self-image is a real and serious issue for cancer patients, but it's a conversation that's been had to death elsewhere on the internet. Nevertheless, here I am. 

I am not exaggerating when I say that most of the breast cancer literature I received throughout this whole ordeal featured some version of a "Top 10 Ways to Look your Best During Chemo." Everywhere I turned there were makeup tutorials, skincare regimens, hair-loss grief groups (well, I'm sure they exist somewhere.)

"This headband makes me look less bald, right?"

When I found out that chemo was on the horizon, hair loss was always the first side effect brought up by my doctors. Oh sure, they told me about the crushing fatigue that was coming and the fact that my ovaries would most likely go on permanent strike. But first, it was always: "You WILL lose your hair." I got the vibe that I was expected to tearfully grieve my doomed noggin while browsing the wig and hat pamphlets they had so helpfully placed in my care-plan folder.

Let me be clear: I am NOT above caring about my appearance. I care. I care a lot, in fact. I am only observing how inflated the subject seems to be within the breast cancer community. There was no wig and hat pamphlet in Paul's care-plan folder. And, truly, Paul's potential baldness would have been a far greater loss to the world than my own. I mean, have you seen my husband's pre-cancer curls?! Let's just say Ingrid has her father to thank for her voluminous corkscrews.

Come to think of it, I'm almost positive Paul's doctors never even mentioned hair loss when discussing chemotherapy. They were concerned with other things. Like shrinking tumors.

Matching His-and-Her Hairstyles

Of course, I am mostly just kidding around here. It's only natural that a predominantly (but NOT completely) female disease would be handled this way. Generally speaking, more women than men are going to be distressed by hair loss, scaly skin, and yellowed fingernails. I don't think that a patient's body image during cancer treatment is something to dismiss as irrelevant or unimportant. Even so, focusing on the exterior only further trivializes a disease that is already regarded by way too many people as "the easy type of cancer."

As for myself, I can tell you: there were tears shed when Paul shaved my thinning hair several months ago. I didn't hate the way I looked without hair. What I hated was LOOKING LIKE I HAD CANCER. 

For the first few rounds of chemo, I managed to still look like me. More importantly, I still felt like me. But as the drugs started to take their toll, things changed. It's weird, but I distinctly remember the first time I looked in the mirror and saw someone I did not recognize. Call me dramatic, vain, whatever. I could not stop staring at my reflection. I was spooked. When did this happen?! Physically, I didn't feel like a cancer patient. I felt like Liz Coleman, living my Liz Coleman life.

But my face betrayed me. Regardless of how I felt, there was no mistaking - I looked like a cancer patient. Makeup-free, with a few stray strands of hair shooting out of my scalp, I looked sick. Exhausted. Not normal, everyday mom-exhausted. Cancer-exhausted. It took some getting used to. 

What also took getting used to was looking like a cancer patient in public. As I've already made known, I am as introverted as they come. I do NOT enjoy drawing attention to myself. I go to great lengths to remain invisible when we go out, a virtually impossible task with a rambunctious toddler in tow whose top priority is to be seen (and heard) by everyone. Braving Wegmans for the first time sans-eyebrows was stupidly unnerving. I've also learned the hard way that wearing a headscarf in public is tantamount to wearing a sign around your neck that reads in bold letters: YES I AM SICK. PLEASE COME TALK TO ME. My own personal version of hell.

Poor Shark Girl's perplexing look resonates with me and my goofy bunch

Though it hardly phases me anymore, I used to be cringingly aware of how much we stuck out. A loud toddler, a bald chick, and a young guy wearing thigh-high support stockings with sandals are bound to turn some heads. Though, really, I should be used to this since Paul's signature look pairs tie-dye tees with vibrant plaid shorts. When first dating, one of his sisters asked point-blank: "Aren't you embarrassed to be seen in public with him??" Embarrassed I was not. Inexplicably proud was more like it. Young love. 

10 years, a baby, 16 rounds of chemo, and one bi-lateral mastectomy later, I stand in front of the full-length mirror in my bra and underpants, looking not unlike a cast member of The Walking Dead - skinny, buzz cut, zero makeup, deep undereye circles, the pink scar from my mediport hinting at where I've been. I am positively gritty. 

But I feel like me. And It didn't take some glossy leaflet on self-care to get me here.

Just my equally oddball spouse. That and the natural passage of time.

Post-Mastectomy: The Good, The Bad, And The Lumpy

Surgery was a smashing success, then.

If I were more mobile, I'd be celebrating with some version of a happy dance like these hooligans:

To sum things up:

• They removed ALL traces of cancer (are you happy dancing, at least?)

• Mediport was removed through the incision in my left breast. Meaning: one less cut on my already battered torso (woot!)

• Plastic surgeon was able to go straight to implants, bypassing the expander stage. Meaning: one less surgery down the road (double woot!)

• According to my surgeons, things look beautiful. According to me, things look...a touch macabre? It is funny (and maybe awkward) how they admire their handiwork. "I have to say, I mean wow. It looks beautiful." Um, thank you? I never know how I'm supposed to respond to this. "Thank you" sounds like I'm taking credit for something that's not intrinsically my own. Plus, it makes things rapey as heck. So I just nod and smile in agreement and say, "I'm happy with them." (I am.)

• Today marks nine days post-mastectomy. Oxycodones ingested today: 0. I'd like to credit this to my superwoman level of pain tolerance. But truly, I just want to poop. ??

Circling back to the pain thing. I don't have much to go on here by way of comparison. The only other surgery I've had was my wisdom teeth extraction 13 years ago. I've given birth, but I was team epidural all the way. Other than a few broken fingers and a few stitches on my pinky, I've managed to glide through life unscathed and relatively pain-free. So, at the risk of sounding like a complete baby I gotta say: Sweet sassy molassy, that stuff hurt!!

"Pain!" (CC BY-SA 2.0) by Hobbes vs Boyle

I'd be doing breast cancer patients the world over a disservice by sugarcoating things. My mastectomy was excruciating. Level 10. This is due, in part, to the fact that my implants had to go behind my chest muscles (to minimize damage from radiation), and my surgery included axillary dissection (armpit lymph node removal). My surgeon wasn't kidding when he said I'd be "uncomfortable" in that area. More like searing, stabbing, stop-you-in-your-tracks kind of pain.

Even so, I only spent one night in the hospital. I probably could've used another day of intravenous Dilaudid, but I've got that thick Eastern European blood coursing through my veins. A fact of which I am neither proud nor ashamed. It's just how it is.

For generations, my mother's side of the family has displayed an outright bizarre affinity for legendary Serbian strongman Peter Zebich, reluctant to so much as flinch in the face of serious pain. Were my grandfather, for instance, in a peculiar chain of hypothetical events, to be shot in the side by a stray bullet, he'd likely shrug halfheartedly and drive himself to work.

"Strong Man is Strong" (CC BY 2.0) by LOLren

So whenever the hospital staff asked for my pain level I never ventured beyond 6 or 7. Which: WHAT?! Because I was in actual real agony. But that blasted Peter Zebich weirdo. I can't shake him. Who am I in the face of decades of stubborn, kooky, pain-immune immigrants??? Mainly, though, I just wanted to go home. Pain level was irrelevant when it came to that goal. So I stuck with safe number six.

By now, my pain is completely under control. It's more like a post-workout muscle ache. I can certainly jive with that.

The drains though. I know I sound like every basic breast cancer patient who ever lived when I say this, but: They. Are. The. Pits.

For those of you unfamiliar with the mastectomy process, when you come to after surgery there are a few new developments you're bound to notice:

 1. Pain
 2. Pain
 3. Drains - a duo (or, in my case, a trio) of thin tubes hanging about your body like red tentacles, each emptying a bloody mixture into a plastic grenade that is safety-pinned to your new, fashion-forward surgical bra. But who cares. No big deal. You just had cancer removed, kid!

I know, I know. The miracle of modern medicine and all that - how can I possibly complain about something that is ultimately assisting my body in its arduous job of healing itself?!? It's just - I look like a lumpy bag lady. Also, I haven't showered in 9+ days, so I'm smelling something like a lumpy bag lady too.

There are loads of breast cancer blogs out there. With loads of post-mastectomy fashion advice. Women are smart. They think of these things. Things like what should I wear to the hospital when I go into labor? What kinds of outfits can I wear with slip-on sneakers? These are the pressing issues I bug my friend Google with late at night with a glass of wine. Thankfully, there are enough honest lady bloggers (or manly men bloggers - I don't discriminate) who can tell me no, I'm sorry, but no. A pear figure just cannot pull off that pencil skirt you've been eyeing, so stop it.

via GIPHY

From my research, I managed to retain the advice that warned about how limited my arm movement would be. Hence, the button-down tops that went into my hospital bag. But my brain either failed to register or chose to ignore the bits about drain-fashion. Honestly, I am flabbergasted by these plastic bulbs hanging about my mid-section. I cannot for the life of me imagine any outfit configuration that could satisfactorily camouflage them. I'm quite resigned to the lumpy bag lady look. But I am not happy about it.

Besides, who are these magical mastectomy-fashion bloggers who are attending social functions right after surgery??? Don't they know how bad they're making the rest of us look? I consider myself to be doing remarkably well in terms of recovery. But I can't very well see myself in anything other than sweatpants, doing an activity any more taxing than lounging poolside with an iced tea and at least 600 pillows. I mean, I guess if you had to go back to work? But anything else seems impossible. Impossible and dumb. There are times in life that call for a good break from all the DOING. This is one of them. It is good to just be.

My writing seems to have gone lopsided. Enough about me. I'm boring. How is my heroic counterpart coping with it all? He might tell things differently, so I'll give you the truth: he is as wonderful a caregiver as he is a patient. When I was too weak to open my pill bottles, he was right there to make sure I had all the muscle relaxers I needed. When I struggled to hoist myself into bed, he was there to boost me up, rearranging pillows until I was comfortable.

Now that we've both been on each side of the patient/caregiver equation, I can say without reservation that we make a pretty neat team. There may be zero symmetry to life. It's sloppy. It's uneven. It's unfair. But there are those odd few moments of total cohesion where things just fit. And when they do, you are unspeakably grateful for your other half. Because where would we be without the one person who's willing to help empty our bloody surgical drains? (It was my sister, actually. But you get the idea.)