It's Surgery Week. Let's Talk About Nerves.

4 days until surgery. The madness Richter scale is rising. I'd say we're at a 5. No, 6. 

6 and mounting steadily.

I recall informing people during the early stages of my treatment that I was "quite zen" about things. I wasn't being flip here. Or arrogant. I wasn't trying to downplay the gravity of our family being handed a second cancer diagnosis. I was just telling the truth. I felt peaceful. I don't know why. I'm a freak. I'm a weirdo. I don't belong here.

If you approached me anytime from late February until maybe a few weeks ago and asked me how I was doing that's probably the answer you got: I feel fine. I'm at peace. Life, I love you; all is groovy.

Of course, timing is everything.

My sometimes fragile mental state has been subject to a rather extreme yo-yo effect since diagnosis. The first two weeks? Zen is not the word I'd use to describe...anything. Things were more like... a rabid runaway train heading full-speed towards a collapsed bridge. With the exciting movie score replaced by panicked primal screams.

Those first two weeks I was light years away from anything remotely resembling "zen." I was scared. Angry. Anxious, mostly. I didn't know how in the heck we were going to get through the next year.

Some of my fears were sensible. How were we going to take care of Ingrid when we were both too tired to move from the couch? How were we going to make mortgage payments? How would we keep our refrigerator stocked? How were we going to coordinate puking time slots with ONE bathroom???

For two weeks, I was in full-on freak-out mode. Probably only Paul noticed. Because I am an expert at hiding my crazy.

Then during Sunday mass we heard this fortuitous Gospel: Matthew 6:25-34. It's an exceptionally beautiful passage about NOT WORRYING. It's the one with the "birds of the air" and the "lilies of the field." Here:

"So do not worry and say, 'What are we to eat?' or 'What are we to drink?' or 'What are we to wear?' Your Heavenly Father knows that you need them all. But seek first the Kingdom and his righteousness, and all these things will be given you besides. Do not worry about tomorrow; tomorrow will take care of itself."

Those words were the balm that my jittery mind needed. I went home and printed them out and stuck them on my fridge. And then scribbled them in my journal. Because I'm slow at these things, and I need constant visual reminders.

"DO NOT BE ANXIOUS." Easier said than done, yes. But absolutely necessary if I ever planned to make it through the next several months.

I did make it through. Hi. I'm Liz. Still here, still (almost) sane, still making mortgage payments and feeding my family.

I'm slated for surgery in 4 days. My surgeon will remove both of my breasts (one for prophylactic measures) and all of the lymph nodes in my right underarm. He'll also remove my mediport (sayonara sucker). My plastic surgeon will insert expanders, which will slowly stretch the skin. (I know. It freaks me out, too.) It will be several months before they can put in implants because I need to get blasted with radiation first.

sidenote: Please, don't hassle me about my decision to go down this surgical route (reconstruction, removing a healthy breast, etc). People have opinions on everything under the sun, and for whatever reason, breast reconstruction strikes a nerve with certain pontifical persons. I've put a lot of thought into my choices, and I am not making these decisions lightly. Keep in mind, reconstruction after breast cancer is NOTHING like getting implants. OK?? Different procedure, different outcomes, different emotional things going on. I am not getting a "boob job." I am getting CANCER out of my body. 

Anyway --

My anxiety through all of this has been like bookends, sandwiching a few months of calm. I've come full circle now, back to the nail-biting stomachaches of my initial diagnosis. Three cheers for Lorazepam! 

And, truth be told, even my transitional period of "zen vibes" was peppered with worry. Perusing my journals, I found an entry in May where I confessed to crying for a full week. Basically over nothing. But then my smart husband reminded me:

"Uh, Liz. This isn't 'nothing.' It's not just some minor bump in the road that every couple encounters. This is big. And it's hard. And you just got your body pumped with drugs. So go REST because this is big, hard, shitty stuff, and your brain can only take so much before it cracks."

It was such a gift, then, when my Godparents offered their beautiful home on Lake Canadaigua for a brief respite before surgery. They are the loveliest people, and being on the water with my favorites was exactly what I (we) needed.

Our fearless passenger: Ingrid was born to be on the water.

 

I believe those 3 days made up the longest stretch of time I've gone without dwelling on my upcoming procedure or  Paul's cancer. That's something. We drank beers on the pontoon boat, we laughed hysterically on the jetskis, and we reminisced about Breaking Bad  in the hot tub under the stars. We collected seashells and memories. It was marvelous. It gave us the distance we needed from our worries to just be with each other and enjoy life. 

I lied, though. I did think about my surgery. But only once or twice, when it was brought up in conversation. At one point, my sister's boyfriend asked a rather oddly phrased question: "Liz, are you excited about your surgery?"

I laughed and replied with a quick sarcastic response. Um, yes, I am sooo excited to have my body disfigured and go through several weeks of feeling like I have cannonballs strapped to my chest. I am the luckiest!

But he was serious. (?!) Once I worked through his question, which was probably garbled by a couple of IPA's, I understood what he meant. He was asking me (rather astutely, actually) if I was excited to GET THIS CANCER OUT OF MY BODY ONCE AND FOR ALL. Was I excited to be CANCER-FREE? 

I can get so caught up in the awful things that surgery means to me. (disfigurement, pain, helplessness during recovery, lack of control, etc.) But, really, I should be looking at surgery differently: it's going to fix me. It's going to take my breasts, yeah, and I'm angry about that. But it's also going to give my cancer the boot.

So ok: I guess I am excited about surgery. Or I should be. If I think hard enough about what it really means, I can be happy about it. If it can save my life and keep me around for my gorgeous daughter, then I say: take whatever body part you must.

So. Precisely three years after I was admitted to Millard Fillmore Suburban Hospital as a rotund and blissful mom-to-be, I will be admitted there once more. Less rotund, less blissful. But still hopeful. And, dare we say, excited??

Pillow Talk: Not for the Faint of Heart

Paul and I have been having a series "pillow talks" where we chitchat about all sorts of things before we tumble into sleep. This is something couples do, I hear. It has never been a thing for us. We have never been "pillow chatters." We've always been of the persuasion that holds bedtime as a sacred time for REST, not for discussing one's fondness for retro ice cream parlors. But people bend. Now, we are what I'd call casual pillow talkers. It's adorable.

Anyway, the other night as we were precariously leaning over the fuzzy brink of dreamland, I pressed Paul for info on his "Ingrid Journal." Paul's "Ingrid Journal" is something he came up with several months ago. The idea is that he writes letter to our daughter in a notebook so that she can read them when she's older, after he dies (dark, sorry).

So I asked Paul: what sorts of things do you write about in that journal? I expected something along the lines of how much he loves Ingrid's sweet gap-tooth or entries filled with sage fatherly advice. Like detailed instructions on how to change a tire...with complementary sketches for a visual aid. She would be so grateful for that. What a thoughtful dad!

But this is what he told me: "I just write about the things we've done that day. So that she can have memories of me."

And that, my friends, is the sound of a heart breaking into a trillion tiny pieces.

It's too much. It's too much for me to consider my dear husband contemplating a near future where his 3 or 4 year-old daughter will not remember him. It's too much to think about death being that close to us. It's too much to know that Paul plans for that version of our future.

I suppose we both do. It may not happen, we pray it won't. But I'd by lying if I said we never think about his death or talk about it. We do. We have to. It's very much a possibility, and it will very much change our lives. My head isn't clear enough to elaborate on the subject. It's too big right now. It's too much. As Ingrid says when I ask a favor of her: "Probably later, OK?"

OK.

The Problem with the Cancer Warrior Metaphor. Or, more aptly: my crusade for sweatpants appreciation

Some days, I'm a bad cancer patient.

Some days I can't stomach the thought of doing, erm, anything. Unless it involves eating ice cream in bed. With someone else bringing it to me.

Some days I can't be bothered to put the laundry away. Or to force my strong-willed toddler to eat spaghetti with a fork instead of her hands. Or to read a book, even. I just want to lay on the couch and let myself feel tired and cranky because, um, hello? I have cancer.

So let me.

I'm not supposed to say these things. What I'm supposed to do is throw back some organic plant-based fuel, strap on my running shoes, and parrot a litany of positive platitudes. With cancer patients, it's always: fight, fight, fight! Stay positive! Get dressed every morning, even when you don't feel like it! Go for a walk! Get pumped, eat leafy greens, be a survivor dammit!

There is all this, let's face it, useless rhetoric swirling around cancer patients, pressuring them to beat their disease. To "rise above it," to "kick its arse!" to "believe/will/push themselves back into a proper state of health."

The problem with this mentality is that it assumes the people who've "succumbed" to cancer were just lazy twits who didn't care enough to fight. Which is so beyond bogus. 

There's a very weird and very shitty pressure to always "be the best cancer patient you can be!" Tied to this is the ever-present implication that, in order to be cured, cancer patients must actively remain in combat mode. A fighter's stance and a positive attitude are all you need to make the magic happen. 

Right, so I guess what we need to do is become fearless fighting machine ninjas. Who smile all the time.

I also  think that, to some degree, people can delude themselves into thinking that they've earned some sort of gold medal of health by NOT getting cancer. There's a touch of arrogance tied up in it. They think: of course, I'd never get cancer. I use coconut oil. I run marathons. Nitrates? GOOD GOD, NEVER! 

They think: those poor people who got cancer. It's not their fault...not really. BUUUUT, MAAAAYBE if they just drank less beer or ate less sugar. Who knows. They might change things around and actually CURE themselves.

Bravo, dude. I did all those healthy things, too. Well, not running marathons. Only crazy people do that. But I ate veggies and shopped at farmers' markets and exercised and never touched white bread.

I don't think it's intentional at all, and it's actually quite subtle, but I've noticed (not often, thankfully) this condescending air towards patients who are clearly "failing" at having cancer. There's this grossly oversimplified approach to health floating around that can unfairly place the blame of a cancer diagnosis in the hands of the patient.

I see it in unwitting Facebook posts about how 15 minutes of daily meditation are all you need to reduce your cancer risk. I hear it in conversations about how so-and-so had stage 1 melanoma and she ran everyday and look at her now: in full remission! That one just makes me laugh. Because I will NEVER UNDER ANY CIRCUMSTANCES BECOME A RUNNER.

If you have cancer (or a physical ailment of any kind) I'm giving you full permission to tell those people to go to Hades. 

Be a grouch for a day. Sleep in, watch garbage on TV for 9 hours straight. Skip yoga! Go nuts, open that sugar bowl, and suck it through a straw (side note: I kid you not, I have memories of my sister and me doing this...sitting covertly on the kitchen counter with the glass sugar bowl between us and sucking it up THROUGH STRAWS. Maybe that explains the cancer. It's not an altogether off-base theory.)

Look - I'm not writing off people who live healthy lifestyles. Hooray for them. And mostly, sure, they're not all in your face about it. There's nothing wrong, per se, with having a good attitude. With being positive. Obviously, I think it's important to be active, to eat healthy, to exercise. Go ahead and throw in some essential oils and meditation while you're at it. I'm all for those, too.

But I'm also for staying in my pajamas until 5 pm if that's what I flipping want to do. Because - and I hope I'm not bursting anyone's bubble here - putting on trousers and lipstick every morning is most definitely NOT going to cure me of stage 3 breast cancer. Even if it's the most terrific shade of berry pink that actually matches my chalky chemo-skin.

Cancer Didn't Make Me a Hero: It Made Me Tired

I am done with chemo. That's right, I finished my 16th and final infusion yesterday.

On hearing about my completion, I was given major props by everyone. As if I had just graduated with honors from Princeton. There was a lot of congratulating going on and thumbs up and even a pair of fresh-cut roses gifted to commemorate such a victorious feat. 

It felt good. People are so kind.

But it also felt strange because, c'mon, it's not like I contributed anything worthwhile to the human race by surviving weekly doses of poison being pumped through my veins. Mostly, I sat in a Lazy Boy for 2-3 hours every Wednesday trying my darndest to complete just one Sodoku puzzle. These were one-star level puzzles, and they were IMPOSSIBLE.


Some people spend their Wednesdays discovering new gene-altering drugs to eradicate disease. Others devote their mornings to composing euphoric sing-along musicals with transformative dance numbers. And I can't even complete a level one-star Soduko. I do not deserve so much as a high five, let alone two white roses.

I just get though things, really. I'm no pioneer here.

People, though, are so kind that they bestow, with alarming regularity, magnanimous epithets on me and Paul that I'm not certain we've quite earned.

They say things like "you're the strongest person I know" or  "you're such a fighter" or "damn girl, you are such a ninja warrior princess!" No one has ever said that last one, but I would be so beyond flattered that my head would probably burst into into a thousand pink butterflies and I would legally change my name to: "Liz Warrior Princess". (Hey - morning after chemo here. Anything goes.)

The truth, if you care to know, is that I don't feel particularly brave or strong or brilliant (again, level 1-star puzzle people). I am just doing what I have to do to survive and carry on. Sometimes, I'm good at it (i.e. I don't cry in the shower, and I go for a walk after treatment). Sometimes I'm appalling at it (I'm driven home in self-imposed silence and then devour potato chips while binge-watching Sherlock. Later, I may or may not launch into an irrational fit of rage over a bowl of cereal milk left out in the TV room.)

I understand why people say such undeserving things on my behalf. I really do. Some of them may even genuinely believe chemotherapy has morphed my husband and me into a pair of benevolent crime-fighting superheros.

Or, more likely, they are just being nice. One thing they do have right, to an extent, is that having cancer has changed both of us. In some ways, yes, for the better. We're more empathetic, we've been forced to practice selflessness with each other, we've had to learn to surrender to God's will (always an on-going lesson).

On the other hand, having cancer has also brought out some ugly parts of ourselves, mostly when we are at home together. The gracious people calling us Warrior Ninjas do not see that, of course. The truth is there are looming moments (days, weeks, months) of despair and hopelessness. Times of doubt, lack of Faith, crankiness over blanket-hogging.

We fight. We grumble. We worry. We are just humans being humans. Weak. Tired. But doing our best. Usually.

Thank you for choosing to see our better side, though. Or for pretending to, if that's what you're doing. Just thank you for the kind words. They are good to hear. And it is good to have chemo behind me.

I'm allowed to post this because I'm a mom. And I have cancer. And it's a riot.

Caillou is off-limits in our household. My sanity cannot allow it. If you've seen the show, you will appreciate this:

Also, HAPPY FOURTH OF JULY FOLKS!!!

Nesting: No I'm not pregnant. I'm starting chemo.

I feel like I need to put this out there because it's making me squirm: I am not a tech-nerd (though, let's be real, I wish I was). So if you are viewing this blog on a mobile device the header image likely looks like rubbish, but I just don't have it in me to attempt making things look pretty right now. Not when there are more pressing matters at hand. Like talking about my escalating lunacy as surgery creeps closer.

Actually, the lunacy has been there from the start. When I first learned that I would have to go through chemotherapy, I launched into this frenzied nesting craze. After wasting a good 3-4 days weepily watching Downton Abbey, obvs. It was like being pregnant all over again. In my mixed-up head, it was like I had to prepare for a total domestic collapse. For a future where I wouldn't be able to lift a finger so I'd better scrub the hell outta these pergo floors while I still have a spring in my step! 

A week or so prior to chemo, I went mildly beserk in Target loading my cart up with "essentials" -  all-purpose cleaner, laundry soap, a 10-pack of tissues, toothbrushes, handsoap, febreeze, swiffer refills...and an eyebrow makeup kit so I could look less freaky scrubbing my toilet. Priorities.

Maybe, in part, my nesting craze was in response to the complete lack of preparation I had when Paul first went through chemo. I mean, I had literally just given birth when his cancer came back. I had nothing sorted out. Things were nutty. I thought (or didn't think at all) that I'd push out this kid, and we'd go home to start our happily ever after. Not the romantic movie version of "happily ever after," of course. I'm not that delusional. But nothing involving an entire kitchen cabinet relegated to anti-nausea pills. That, I did not prepare for. 

I didn't have our kitchen stocked with white rice, saltines, and applesauce. I didn't have that special mouthwash for receding gum lines. If I'm being honest, I was not prepared to go back to work full-time while Ingrid was still so little. I wasn't prepared for the post-partum depression, the exhaustion, the chemo farts (those are real!)

Hence, the nesting. I didn't want to feel that unsettled mayhem ever again. With my diagnosis, things were different because I could arm myself before battle (gotta quit with the "battle" analogy). So I went into hyper-preparation mode. I organized sock drawers and stocked my pantry with broth and oatmeal. This time around, I'm familiar with the cancer process (scans, infusions, blood counts, etc.) By now, I know a thing or two about nutrition during chemo, and I've had time to watch YouTube tutorials on how to tie a head scarf.  I went to Amvets to pick up comfy sweats (much more essential than cleaning products, in the end).

I was ready for chemo. My uncluttered closets were ready for chemo. 

Thankfully, for Paul's sake, the more weeks of treatment I put behind me, the weaker my nesting impulse has become. You can find proof of this in this photo I snapped today:

If you look closely, you may be able to spot a reading toddler among the rubble

I'm almost on the other side now. One more Taxol infusion to go. I'm finding that as I switch gears from getting through chemo to preparing for surgery, I'm entering a whole new phase of mania. Pray for Paul.

My surgery date is now officially less than one month away. I don't like that. The idea of a modified radical double mastectomy makes me woozy. Just the word: radical. It's fine when we're talking about political stances or 90's pop bands (New Radicals, anyone?) Not so much when we're talking about slicing into my body. 

So, I've been a bit prickly lately. I feel unsettled. Like there's nothing I can do to stop this terrible something from happening. It's unpleasant. 

And what do we do when things feel like they're spinning out of control? Based on my feverish patterns, we can:

A. Head to Target

B. Bleach our shower curtains 

C. Break out the Gin & Tonics OR

D. Put our Rosaries to good use

(psst. You're supposed to pick choice D)

It's hard. VERY. But I try to live by this:

It's a toss-up, given my touch-and-go mental state these days. Pray, hope, and don't worry. It doesn't hurt to follow that mantra with a good stiff drink, too. It is Gin & Tonic season, after all.