The Peaks and Valleys of a Life with Cancer

This space could use a little jolt of happy, wouldn�t you agree?

I had my first post-op appointment with my surgical oncologist yesterday. Remind me to stop scheduling things in the afternoon. Waiting around all day turns me into a strung out lunatic. By the time we were ready to leave, my stress level had surpassed its breaking point. Paul drove. I cried.

Perched on the examining room chair, I fidget with the ties of my pink cover-up. My doctor pokes his head in the door, smiling. Smiling is a good sign. I like smiling.

We talk about how I�m feeling. He takes a look at my incision. He decides it�s time to remove the sutures.

�I�ll be right back. I�m just going to run and grab a suture removal kit, ok?�

Ok. But um, like -- do I still have cancer?

I love my doctor. He�s the best. He�s brilliant. And sometimes brilliant people are�slightly scatterbrained? Or eccentric. So I forgive him for not launching into my pathology results the moment he walked in the door. 

As he�s pulling out my stitches: �So the pathology, it all came back negative. The margins are clear.�

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

And you didn't open with that because...?!

But who cares! I am blissed out of my damn mind.

To clarify: when you have a mastectomy, a rim of normal tissue surrounding the tumor is also removed, which is called a "margin." My first mastectomy in July resulted in "dirty" or "positive" margins, which is why I required a second operation.

It turns out there is still one area where the margin is "close," meaning cancer cells were not far from the edge of the removed tissue. This isn't ideal, but my medical team is confident that adjuvant radiation therapy and 10 years of Tamoxifen will be more than enough to make sure this cancer knows it's not welcome and it needs to find another couch to crash on.

I practically skipped down the steps to the parking lot. I was giddy. Like a 50 pound weight had been lifted from my shoulders.

And then we got into the car and headed to our second appointment of the day: Roswell Park's Assessment and Treatment Center.

These are our days: ping-ponging from moments of dizzying rapture back to the unhappy reality of Paul�s worsening symptoms: feverish temps, stomach pain, vomiting.

Right before we had left for my appointment, Paul called his oncologist's office to fill them in on his condition. "Come in," they said. They needed to check him over. To rule out an infection or something worse.

It was the usual succession of tests -- bloodwork, urine sample, x-ray. Most of our time is spent waiting.

I crawled into the small space Paul had made for me in his hospital bed, avoiding the tubing that was pumping sodium chloride into his depleted body. We watched Chopped on the Food Network, and I pressed my face against his bony shoulder. Everything: the flit of nurses in-and-out, the boring cable TV, the rough hospital linens --it�s all so familiar. How many days have we spent in this exact position?

Nothing particularly stood out with any of Paul's test results, so they sent us home with a short-term antibiotic (just in case) and instructions to call in the morning to schedule another blood transfusion.

Which is how we will be spending our day tomorrow.

Highs and lows, man. Highs and lows.

We Need To Be OK with Not Being OK

In case you were wondering, here are ten ordinary tasks that are impossibly hard to do after a mastectomy:

1. getting out of bed 
2. getting into bed
3. getting comfortable enough to sleep in said bed 
4. opening the refrigerator 
5. opening pill bottles 
6. opening anything 
7. staying awake for more than a few hours at a time 
8. putting on t-shirts 
9. sitting on the same couch as a squirmy 3-year-old 
10. updating your blog, apparently

Things went fine on Monday. As fine as these things can go. No complications, unless you count a bout of nausea so severe it made me reach for the call light. I LOATHE using the call light, so yes, it was that bad. 

No skin grafts were necessary for the wound closure. Thrilling news! We are so, so pleased about that.

By Tuesday afternoon, I was home. I�ve been sleeping ever since. I wouldn�t be surprised if Ingrid equates adulthood with perpetual naps and constant doctors' appointments. Because that is what the adults in her life do: sleep and go to the doctor. She may never want to grow up.

How does this surgery compare to the one I had in July?

Pain level is about the same. Very controllable with meds. This time around, though, it�s like my body is confused about where exactly surgery took place. I have zero pain at my incision site. For the most part, the right half of my torso is entirely numb. Scar tissue and all that.

You know where I hurt? My bum. Swear to God. The pain starts at my lower back and radiates down to my derri�re and upper thighs. My surgeon anticipated lower back pain because of all the skin-stretching going on, so I�m not concerned. Just sore.

�I�m fine, I�m fine, I�m fine, I�m fine, I'm...What Were We Talking About?�

How am I doing emotionally? Eh. The first few days after surgery, your brain can only process things on the most basic survivalist level. You just want to rest, to stop hurting, to be able to stomach a bowl of oatmeal, to heal.

Days pass, and you start to feel better physically. Your brain has enough fuel to move beyond �let�s just stay alive today.� This is where the emotional distress creeps in, ever so stealthily. Or maybe it kicks in the door full-force, robbing you blind and leaving you for dead.

I�d say, on an emotional level, I am coping less than perfectly. I�m not locking myself in the bathroom to cry all day or anything. Most of the time, I�m somewhat getting through my day. When I wake up, I brush my teeth and give my kid cereal. But there�s a new heaviness with this second surgery. Partly because I�m anxious about the pathology results. Partly because I�m unhappy with the way I look. Partly because I feel guilty about being unhappy with the way I look. (Emotions are ALL over the map. Tamoxifen isn�t doing me any favors, either.)

In our house, there�s this chorus that echos repeatedly: �I�m fine, I�m fine, I�m fine, I�m fine.�

�I�m tired, but I�m fine.�
�It�s painful, but I�ll live.�
�I�m repulsed by my own skin, but haha, can�t complain!�

I will live. And there�s plenty more reason for me to be happy with my life than to complain. BUT...am I really fine? Is that seriously the best adjective I can come up with to describe my current emotional state? Am I really 100% OK with having my chest butchered like a slab of meat? No. I would say, um, not.

Yesterday was the first time I really looked at my body without clothing. Like really looked at it.

I grossed me out.

I have an 8-inch incision that runs diagonally from my right armpit to just past the middle of my chest. It meets with a curvy 5-inch vertical cut running down the right side of my torso.

The scars are unpretty, but I can live with them. What bothers me is my lopsidedness - there�s still an implant where my left breast used to be. I�m all for nixing both implants to achieve some balance. At this juncture, however, my doctor didn�t want to add more surgery to what was already a major operation. He preferred to minimize even the smallest risk of complication or infection, and rightly so.

I will be okay. When I am. Until that time, I�m going to be a little bit sad about my less-than-terrific uni-boob. I�m going to be mildly (and temporarily) unhinged while I�m waiting for test results.

You Don�t Need to Bury Your Ugly Feelings Beneath a Layer of Rainbow Sprinkles and Unicorns

Besides, I�m more than tired of these sparkly images of women jumping right back in the saddle after breast surgery. I�m tired of the trite Pinterest memes about �cancer-thriving� (yes, that is a commonly used term) and �feeling strong and beautiful in your skin� right after a mastectomy. It�s total hogwash. I feel the opposite of �strong and beautiful in my skin.� I�m self-conscious and uncomfortable with my asymmetry. 

It takes time (and counseling and drugs and prayer) to achieve that kind of peace. Let�s not kid ourselves.

Let�s also let ourselves be sad. And angry. And human. Why are we so quick to deny our suffering in front of people? In front of ourselves, even? Why are we obsessed with being okay with NOT okay things? Why do we strive to put a positive spin on every last thing that happens to us?

Because we want our sad stories to come with happy endings. We like our challenges in life to come paired with a cute corresponding morality nugget. Pain is more digestible when it's tastefully wrapped in hip kraft paper and sealed with a bow. We like it to be tidy and meaningful. 

Plain old suffering is not the stuff of inspirational Instagram posts. It�s icky, and it makes us uncomfortable, and we don�t like it!

Poking around an Internet cancer support forum, I found a thread where a woman was struggling with her husband�s recent setback in treatment. She was seeking advice on how to remain optimistic in the face of less than hopeful circumstances.

One response barbed me. It read something like, �you just push through it - that�s all there is to it. Never let your husband see your doubt. You must stay optimistic at all times in front of him.�

Nope. No and no! We all work through things differently, but this is just bad advice.

I�m not advocating indulgent sniveling marathons. I�m not suggesting this woman throw in the towel or that she view life through the murky lens of bitterness.

What I�m suggesting is that she ought to be HUMAN. She�s entitled to feel feelings. Even the ugly ones. Especially the ugly ones. It would likely do her husband good to witness the occasional cry, too. You can still be someone�s rock even if you�re sometimes sad about the hard things in your life.

It�s Okay to Not Be Okay

I�ve been both a caregiver to my husband and a cancer patient myself, so I feel like I have the authority to say: It was OKAY to see my husband struggle with my diagnosis. It was OKAY to see him cry on my behalf. It was OKAY for him to lose it for 10 seconds when I took my bandages off this week.

I mean, it sucked big time to see him so distraught. It wasn�t pleasant (remind me - what part of cancer is?) But it made me feel loved in a very raw and personal and honest way.

Truthfully, it would have irked the shit out of me if his only response to my distress during chemo was a plucky, �You�ll get through it, honey. I believe in you!� It would have been kind of uncool if he was smiling in fake optimism while my breast surgeon explained that my mastectomy had resulted in �dirty margins� and I would be needing another surgery.

It is perfectly reasonable and healthy to run the gamut of emotions here. Cancer will do that to you. Life will do that to you.

As the lovely writer Nora McInerny puts it:

�The cure for grief is not �be not sad� and the cure for anger isn�t �be unangry!� It�s feeling all of these things, even the uncomfortable ones, without judging yourself for them.�

Right on!

So feel your feelings. The gross, painful ones too. Stop apologizing for them. Work with them and through them.

That�s how we�ll arrive at being okay. Not by pretending things are brilliant when they aren't. That only leaves others confused and worse - ashamed about their own ugly feelings. 

Instead, let's be helpful by being honest. Let's give ourselves permission to be something other than "fine." Let's be okay when we're ready to be okay. 

Photo courtesy of  Amen Clinics"Paper Smile" (CC BY-SA 2.0) 

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.

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.)

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??

Post- HIPEC Treatment: 2012 - 2015

Life after Paul's HIPEC surgery was good. Real good. He was considered 'NED' (no evidence of disease) and required no further treatment beyond quarterly CT scans to make sure things stayed that way.
I'm likely romanticizing those first two years of marriage (there I go again), but most of my memories look like this:

Super Fantastic Explosion of FUN!!!

We camped and took roadtrips in my old Volvo wagon and met interesting hippie folks at festivals and visited vineyards and had lots of bar-b-ques and hiked and watched Dexter. We also made this exquisite creature:

Ingrid Philomena Coleman - born July 29, 2014

In August, with a proud, springy gait that is the hallmark of new fathers, Paul went in for his routine scan. That's what his CT scans had become to us: entirely ordinary, unremarkable check-ups. Just part of our routine. At that time I was, for some reason, extremely...I don't know. Naive? Yes. Silly and naive about what we were dealing with here.

Mesothelioma is a bear.

It's viciously aggressive and, in our case, brutally cruel with its timing.

"Liz. Something came up on the scan. They think it's back."

I was gutted. I hadn't even fully healed from the messy ordeal that is childbirth yet, and my husband was on the phone telling me he has cancer. Again.

A week or two later they did a biopsy, which confirmed their suspicions: it's the blasted Meso. Oh, Paul. Sweet, handsome, hilarious Paul. Just stop. Stop having this bloody cancer. Stop so we can be young and new and happy forever.

Sept-Nov 2014: Paul receives two (dreadful, awful, mean) chemotherapies - Alitma and Cisplatin. They don't work.

New Year's Eve, 2014: Dr. Kane attempts another debulking surgery. It doesn't work.

Ok, Meso. We get it: you're bigger than us and a bit of a bully. Can you just be cool for like one minute, dude, and give us a win? Just something small, to make us feel better about the world and stuff.

January 2015: Meso tells us to piss off, but our family and friends and total strangers won't take that for an answer. So they turn themselves into a massive safety net and make sure we are fed and loved and taken care of. They even throw us a huge benefit, raising funds to help us with the mounting debt that happens when you have stupid cancer. People are incredible. I can't even tell you.

February 2015: We look into clinical trials and start traveling to meet with Mesothelioma specialists. First stop: Chicago. Where we have deep dish pizza. And meet with Dr. Kindler. But pizza!

So: oversimplifying here, obviously. Even with our warm and fuzzy safety net and the life-altering experience of tasting Chicago deep dish for the first time, those were some rough months. Looking back, I can see very clearly that I had a severe case of post-partum depression that my stupidhead self ignored. Don't be like me. If you can't get through a day without ugly-crying 16 times, um, get help.

March 2015: We attend a Mesothelioma Symposium in Bethesda, Maryland. Major turning point. Major. We connect with Dr. Hassan's team at the National Institute of Heath. We meet, for the first time, other people fighting like Paul. Meso becomes less scary. Still a bully, yeah. But we discover this jerk does have weaknesses, and we are getting back in the ring. And this time, I am going to be the hot cheerleader wife my partner needs. Hey Meso! That's right, I'm talking to you! GO STICK IT.

April - May 2015: Paul enrolls in the SS1P clinical trial at the NIH. He makes it through two cycles, but is booted in June when his body develops an antibody to the drug. We're bummed, but just gotta keep on keepin' on.

September 2015: Paul receives the first bit of good news he's had in the last year: his tumors ARE SHRINKING!!!!! Wahoooo! Finally, his tumors had responded to something. We were overjoyed. 

Kayaking for Meso: 2015 - Raising funds for the Mesothelioma Foundation

The Beginning, Part 2: Two Surgeries and a Diagnosis

Honestly, I could kick myself for not having kept a better record of those first days. I mean, I write down everything. I have an obscenely heavy suitcase stashed in my bedroom closet that holds piles of old journals. Remember those plastic-bound diaries with the the mini locks on them that were just about the most glorious thing an 8-year-old could ever possess? No? Anyone? Anyone? Bueller?


I was a strange bird.

Diaries were my lifeblood. Still are. Though, I no longer refer to my rabid, sometimes drunken, usually useless scribblings as diaries anymore. I'm a grownup now. And not one who's half as amusing as Bridget Jones, so we just call them "journals" now. Or even more to the point: "notebooks."

So forgive me if I can't recall much of the details surrounding the days leading up to Paul's first surgery. This was, after all, over 5 years ago.

Surgery # 1: Tumor Removal

What I do remember is how weak he looked. I remember how I cried every time I entered his hospital room: here was my big, burly, bearded fiance with 10,000 tubes coming out of him and machines beeping and lights blinking and it was just awful.

I remember how his face relaxed for a second when I gave him a sip of 7Up. I remember how much I had to haggle his nurse to let me give him a sip of 7Up (all done at the behest of my hugely persuasive mother-in-law. When Sally Coleman asks you to do something, you do it!) 

I remember falling asleep with my head in his lap. We had been up all night. It was night again, 11 pm, but his nurses didn't seem bothered that I was still hanging around. "Go home and rest," Paul insisted. "I'll be OK." So I did. And he was.

It would be a week before they could perform surgery. That's one full week without food. One week with a tube through his nose. One week of speculative self-diagnosing. (no bueno!)

The day before Paul's surgery was Valentine's Day. Naturally, I brought him a basket of chocolates he couldn't eat and candles he couldn't light. (In my defense, I had to economize my time, and someone was selling them at work.)

The day after his surgery was my birthday. Naturally, Paul seized every opportunity of coherence amidst intervals of drugged-up grogginess to apologize for "ruining my birthday." He was a much better fiance than I ever was.

In fact, I'd venture to say this ordeal proved Paul was an all-around better human being than I ever was. He handled the pain, the tortuous waiting, the occasional odorous hospital roommate like such a champ. I was the one who was supposed to be strong, positive, keeping it together. All I did was cry. Here was Paul, making fart jokes, and all I could do was CRY. I was actually quite a sissy back then.



Paul's first surgery went off without a stitch. Well, lots of them, actually. (See. Jokes! No more tears!) It was performed by Dr. John Gibbs at Buffalo General. This gifted surgeon was able to remove Paul's tumor in its entirety. Praise!

But.

WHAT IN THE HECK WAS THIS GRAPEFRUIT-SIZED MASS AND WHAT WAS IT DOING IN PAUL'S BEAUTIFUL BODY?!?

They had some theories, all of them wrong. So they shipped the specimen off to Brigham and Women's Hospital in Boston to be identified. It took a month (A MONTH) to figure it out. When they had the answer, they called Paul in for a consultation.

"I'm sorry, but I'm afraid you have Peritoneal Mesothelioma."

I'm sorry, but what now?

So we did what everyone does when they receive a grim (and confusing) diagnosis: WEB MD, give us your wisdom!

We learned it's a rare (though the ubiquitous lawyer ads would have you believe otherwise) and particularly deadly form of cancer most commonly caused by asbestos exposure. Until recently, patients were given 1 year to live. New treatments are prolonging life expectancy, with about 50% of patients making it to 5 years.

I'm happy to report that Paul has joined the lucky 50% of survivors, having just made it to the 5-year mark in March!

So...what do we do next?

Surgery # 2: HIPEC Performed by Dr. John Kane at Roswell Park Cancer Institute

Paul was referred to an oncologist and surgeon at Roswell Park in Buffalo. They decided that Paul required a 2nd surgery called HIPEC. (hyperthermic intraperitoneal chemotherapy) To put it plainly, they were going to open him up again, remove any questionably cancerous lesions, and then deliver a concentrated, heated chemotherapy directly into his abdomen.

Fun times, wow!

The procedure took a whopping 9+ hours. Casualties included a large portion of intestine that had to be removed AND his belly button. (His surgeon apologized for the latter, hoping it wouldn't put a damper on our upcoming honeymoon.)

Paul spent at least a week in the hospital. (shorter than most HIPEC patients) After he was discharged, Paul recovered at a dear friend's home for the brief remainder of his bachelor days (8 weeks), and then we were married in June and lived happily. ever. after.

Not.

"Happily ever after" is for weenies. We DID, however, have the dopest wedding of all time. And we were happy. We moved into a tiny apartment in the country, got a kitten, traveled, and never passed on an opportunity to party like it was 1999.

But like seriously folks, what more can you ask for?

The Beginning, Part 1: ER Visit & The Heinous NG Tube

Let's do this properly and start from the beginning. Or the point in time that I'm now designating as the beginning:

Friday February 3, 2012 - 2 AM

My phone rings. "Liz I wouldn't ask, but the pain. It's not going away. Can you drive me to the hospital?"


I can't remember the last time I was in the ER. No, I can. My college roommate had gotten food poisoning from some bad meatballs. This will be like that. They'll hook Paul up with some fluids, prescribe him some meds, and send him on his merry way. 

But this is not like that, and he's not fine, and we won't be sent home anytime soon. And just like that he's draped in a too-small hospital gown, retching into an equally too-small receptacle.

When the puking stops we make ourselves comfortable and look forward to what has just become an extended weekend. Word! We laugh and take grainy photos with our flip phones. And then some doctor spoils our fun with the words "emergency surgery," and we both realize things are about to get real. 

He tells us there's a mass obstructing Paul's bowels. They need to remove it. Stat.

Luckily, they recognize that this type of procedure falls outside the realm of their expertise so they shuttle us off in an ambulance to Buffalo General. 

Unluckily, that hand-off will become just one stop along a lengthy string of experts, tests, and treatments. 

But in that moment, as we head downtown in what I remember to be chokingly awkward silence, we are still ignorant of how turbulent the ride is going to become. 

We, like most people in our age bracket, had never really considered the possibility that Paul's increasing abdominal discomfort could, in fact, be something life-threatening. That was unthinkable. No, like every previous sickness or broken bone we'd ever had, this was fixable. They'd look at Paul's scans and inform us with a knowing half-smile: "kids, go home. Pick up some Pepto. It's just gas." 

Look. Paul was 27. Aside from a few grays that were probably brought on by my cajoling him into DIY wedding favors ("It'll be fun!"), Paul was the picture of perfect health. He ate vegetables. He didn't smoke. He had nice biceps. 

So cancer? No way, son.

But still. Something was not....right. Weird symptoms started popping up in the fall of 2011. He had sporadic bouts of intense stomach pain. He lost weight. (which we originally attributed to our cutback on beer consumption. yeahhhh) He had sheet-drenching night sweats. It was gross. And, perhaps, worst of all: when he lied down you could actually feel a slight protrusion in his gut. Just a tiny, maybe-I-feel-something kind of lump. Maybe.

In January of 2012 Paul's health insurance finally kicked in, and he tried to get to the bottom of things. He scheduled a sonogram. He scheduled an MRI. Things were moving too slowly. The stomach pain got worse. It became unbearable. And that's when I got my 2 AM wake up call in early February. 

Since that night, since that bumpy ambulance ride into downtown Buffalo, Paul has been through some pretty ugly things. But this. Sweet Jesus have mercy. THIS. IS. HORRIFIC.

A young, anxious nurse brings a sizable tube close to Paul's face. "I need to get this into your stomach," she says. "THROUGH YOUR NOSE."

She tells Paul to relax, which is exactly like telling a toddler to sit silently though The Tree of Life. (Don't try convincing me it's poetry on film. I don't care.) Impossible. Paul is not a wuss when it comes to pain, but with her first attempt to jam that tube up his nostril he instinctively (and forcefully, I might add) pushes her away. She tries again, same thing. He tells her, "I'm sorry, but there's no way this thing is happening. I can't do it." And I believe him. I imagine it's how some mothers feel during labor: nope, this thing is NOT gonna happen. Sorry, you'll have to figure out another way.

Of course, she does eventually work the tube down Paul's throat. Cue Liz breaking down. I'm really very helpful that way. At this point, Paul becomes...less Paul? We certainly aren't laughing about his hospital gown anymore. He's can't talk, he can't eat or drink, and he's in pain. The nurse leads us to another room, and I follow behind her like a lost and frightened child. We wait for a doctor. We wait for an answer.