Why I Won't Be Toasting My Clean Scan This Time Around

I don't even know where to begin, except we have received exceptionally great news this month (my scan was clean, marking twenty months of no evidence of disease), but the occasion was bittersweet, because on July 10th Chris's mom passed away due to complications from advanced Parkinson's Disease. Damn that disease. And this one, too (cancer is not off the hook, no), but mostly that one right now.

Maryann was a beautiful woman, and bitingly funny even toward the end.

The last time I saw her, just before Father's Day, I asked her how she was feeling. She said, "You want the vacation answer or the real one?"

"The real one," I said.

"Like shit," she responded. Those of you who knew her will chuckle a bit at this. She still had so much fight and spunk and spirit, even as her body was failing her. I won't go into details, but the enormity of her spirit was evident in her last few weeks, as she held on for longer than hospice said was possible. In the end, she passed away at home with both her boys and her two favorite nurses there with her.

I loved her deeply, and worried so much about her these last couple of years as her symptoms progressed and her condition seemed to worsen. I tried to cajole her into eating green muffins (made with spinach) along with Quinn, but she couldn't get past the color. Nutrition was easily her least favorite topic as her appetite declined. But she'd smile widely when I would give in and take her to the Dairy Queen drive-thru for "lunch": always a peanut buster parfait. At least there were calories, I reasoned.

I always tried to reassure Maryann (and myself) that the two of us would get through our illnesses together to watch Quinn grow up. "You and me, lady," I used to tell her.

God, how I want to watch Quinn grow up.

***

Quinn told me earlier this week he's going to be an astronaut and fly to the moon, then asked me what I'm going to be when I grow up, when I'm a grandma.

"I don't know. What do you think I should be?" I asked.

"A nurse!" he proclaimed. "To help people."

I just want to be a grandma, but I don't tell him that.

***

Last year, we turned our one-car garage into a mother-in-law suite in the hopes that Maryann would start spending the cooler months here with us (where it is decidedly not cool.) Together with Chris's Aunt Kathie, Maryann and I picked out furniture, decided on bathroom tiles, and went rug shopping together. We bought a painting of a pig to decorate the sitting area.

This week Quinn announced matter-of-factly that Grandma's room is now the "overnight room for when we have other guests."

"I guess you're right, buddy." I tried not to let my voice crack.

It will be awhile before I get around to clearing her toiletries out of the medicine cabinet or taking her robe down from the hook behind the bathroom door.

***

As a family, we are navigating the end-of-life closure, eventually the going-through-and-then-selling the house she'd lived in for 35 years, a memorial service, and down the road, the spreading of her ashes with Chris's dad's (who died of pancreatic cancer six years ago) over the Pacific ocean.

I am trying again to be there for my husband through unthinkable grief. I feel like I have no idea what I'm doing.

***

I am trying to not worry too much when my oncologist tells me: "Your scan was clean, so no cancer, which is great, but..."

... But what?

"Your liver enzymes are a little elevated. We need to take some more blood. Are you on any new medications? Antibiotics?"

No and no.

WTF.

"We had more wine than usual over the weekend?" Chris offers.

"That could be it," my doctor says.

So this happened (extra blood work) because even though my CT was clear, my liver enzymes are mysteriously elevated. Dammit. #scantreatrepeat #stage4needsmore

A photo posted by Jen Campisano (@jencampisano) on Jul 22, 2015 at 4:33pm PDT

I blush and feel like a kid caught sneaking cookies from the cookie jar because in the last four years, I hardly ever drink more than a glass or two of wine, but last week I drank more than I should have while visiting my brother because I wanted to be normal again. I wanted to forget everything we have going on for a minute. I wanted to enjoy a glorious summer night in the northwest, breathing mountain air and curled up under a blanket while visiting with some of my favorite people and not worry about saying no when my glass got refilled more than once.

My older brother and I celebrating another clean scan in January 2013.

I'm trying not to worry too much. My oncologist doesn't seem concerned and he is one of the most cautious physicians I've ever known.

But when you google "elevated liver enzymes" and one of the first results is "metastatic cancer," it's hard not to freak out. Especially given my history. So now I wait, and will try to quell my nerves with yoga and deep breaths and probably a Xanax at night. The plan is to retest next week and see where things stand.

***

I also have, I think, a tendency to panic when I should be grieving. My brain gets emotionally confused -- or something -- and with Maryann's passing I can't help but feel vulnerable myself. I feel it every time a friend goes into hospice. As another blogger and friend put it, "Every time one of my online friends dies and I'm still here, I go through this combination of guilt that I'm here and fear that I'm next."

Is this an actual documented phenomenon? If anyone with a psych degree can explain my extra worries to me, I will pay you (in wine if you want. It looks like we won't be needing so much of ours).

***

I'll keep you guys posted on my liver enzymes. And if I'm posting a little less here lately, this is why, in a nutshell: we have entirely too much shit going on. Please bear with me for a little bit.

In the meantime, there will definitely not be any champagne toasts to celebrate my clean scan this time around. It looks like a peanut buster parfait is in order instead.

How Could You Forgive Your Body for That?

I'm not always the nicest person. Ask Chris. Ask my mom. Isn't that always the case with the ones who know us best? They see the worst of us, and -- how lucky are we -- they love us anyway.

When Quinn and my mom, who's living with us while she gets her things unpacked and gets settled in her new apartment, are both talking to me at the same time, for example, as if the other isn't in the room, instead of handling it the way my more mellow-mannered younger brother probably would with a, "Hey, hey, one at a time guys!" and a smile, I'm quick to snap: "WHAT! What do you even want!" at whichever one of them is closer, usually my mom.

Mother's Day 2012 - with my mom & an unhappy Quinn (sadly, the only photo I could find of all 3 of us together)

With Quinn, I retract a bit, explain how we use our polite words when we want to interrupt when another person is talking. (Luckily, he's not old enough to throw it back at me that maybe I should try my polite words, too?) With my mom, I ask if I can please have some of the wine she's pouring. Maybe it'll help?

To be fair to myself, Chris also left town for a month last week, so I've been a little on edge while I shift the burden and get used to running the household on my own instead of sharing the duties like we usually do. Remembering trash night, cooking dinner and doing the dishes, doing a dry run of our taxes so we have an idea of what's left to spend on landscaping this year, and planning Quinn's birthday party is taking its toll, people.

***

I had a call last week with a woman who's writing a piece on me, who -- bless her -- sat down and read through my entire blog, all three-and-a-half years of it, over the previous week. She asked me a couple of straight-shooting, hard-hitting questions, including how I managed to love myself through cancer, which is, after all, a disease of one's own mutated cells. How did you forgive your body for that? she wanted to know.

I'd never even thought of it like that, I don't think. My body might have made a mistake, but I always blamed cancer, as if it were an entirely separate entity. As if it were not me. I knew I needed to be kind to myself to start healing, but I never thought of it as forgiveness. What was there to forgive? I've always been strong, capable, resilient. Even when I had moments of self-pity, even when I asked my therapist why me? I still knew cancer was not my fault. After all, why anyone?

What I have a harder time with is being gentle with myself (and clearly those around me) when I'm feeling pulled in too many directions.

I have a hard time finding patience. I am irritable because my routine has been knocked askew. Because I still have chemo next week and a scan on Quinn's birthday -- on his birthday, for chrissakes! -- next month. I'm angry because a friend was told she had no evidence of disease and two weeks later they found metastases in her brain. I take it out on my poor mom, who's just moved back to town because of a break-up.

And then sometimes I see her in all her fragility, starting over again in her mid-sixties, transferring jobs and setting up another new apartment after a lifetime of being a military wife and starting over every two to three years, trying to stick to a strict budget but still wanting to treat me to breakfast because that's what moms do, and saying things like, "I can't imagine not working. What would I do with my time?" I wonder if she means these statements as a premeditated response to anyone who might judge her (although I don't think anyone is) since she probably needs to work. I'm sure she doesn't intend to criticize me not working, but I still question whether it's a jab at my decision to stay home.

There's another of my faults, if you're counting: I analyze things to shreds.

So this is how it goes with my mom and I until we find our groove around each other again. There is some friction, so we have more wine than either of us is used to, we let Quinn be a buffer between us because it's hard to be tense when you're racing monster trucks, and I make a joke about my younger brother being our mom's favorite to diffuse any tension and also because he might be. He's all of our favorite.

These are the things I need to forgive myself for, the things I need to work on, the things I have any control over, even when it feels like I don't. How I act, how I react, how I interact with the ones I love the most. I could do better, and I'm always striving for that. In the interim, I love myself anyway. Because we should, and because -- if we're lucky -- our parents do.

But cancer? That wasn't me, wasn't my choice, wasn't my fault. What about you? Did you blame yourself for your cancer? How have you employed forgiveness in your own life? Has it helped you heal?

Better than Xanax

Somehow, three months have passed and it is time for another scan. And, miraculously, I have not been completely hijacked by anxiety this time around (only occasionally held in its grips over the past couple of weeks). I'm not saying I've been a free-spirited, deep-breathing, always-patient monk about it, but remember: this is me we're talking about. Was I ever going to be that person?

My secret to staying sane? Lots of wine.

I'm only slightly joking.

We spent the last week in Portland, Oregon -- Chris at a workshop on volcanic ash, Quinn and I exploring summer in the Pacific Northwest with one of my best friends from college, J.T., and her two girls. We took our three preschoolers to the zoo, the park, a fountain they could splash around in for hours, a farm to pick berries, another park, out for ice cream a couple of times, and to the Oregon coast to explore the beach. We stayed busy.

My friend took me to her -- how do I say it? intense? sweaty? insane? -- spin/dance class where I almost fell off the bike. Her husband had asked me the night before if I had much rhythm even though he's known me since we were 21 and has probably seen me on the dance floor. When I said, "Not really," he replied, "You're going to hate it." Hate is a strong word, but I probably bore a strong resemblance to Elaine in her infamous "Seinfeld" dance. Since I didn't pass out, though, I figured it was a good indication I'd do okay on the echocardiogram of my heart this week. I hope.

Between the blackberries and the misty coastline, I was homesick for that corner of the country where I spent a good part of my childhood. I was ready to find Chris a job studying the soil of the region's winemakers. That's a good job for a geologist, right?

It's not like Chris didn't love the inexpensive microbrews or the lack of pretension or the fact that the only things that will get you judged are putting your recycling in the wrong container or driving too aggressively.

***

This morning I woke up before Chris and Quinn to drive across town for my CT scan, then across the street to the hospital for the ultrasound of my heart. I grabbed coffee between my tests, and a sandwich afterward, before heading a couple of miles south to my infusion center for chemo.

My nurses all asked if I'd had a rough weekend thinking about my scan (results of which I'll get Wednesday afternoon). The truthful answer is no, because it's hard to think about an upcoming scan when you're chasing toddlers and marveling at perfect summer weather and attempting to stay upright while dancing on a spin bike.

I wonder if I can get a prescription for a trip to Portland every three months?

A Chemo-Week Godsend

Yesterday was one of those days -- this week has been one of those weeks -- when the post-chemo exhaustion catches up with me and knocks me square on my ass, when the steroids (or my hormones) make me weepy (highlight: my yoga instructor played "Stand by Me", my and Chris' wedding song, in class the other day, and I was sobbing in down dog), when it feels like a struggle to get out of bed, let alone play with Quinn or do laundry or pour myself a bowl of cereal. I must have an amazing ability to forget how wiped out each treatment makes me, because all of this never fails to surprise me. Chemo-nesia? Something like that.

Part of it -- a large part of it, actually, I think -- is that the steroids I'm given with my infusion keep me up well well well past my bedtime, my mind and body buzzing like I drank a quadruple venti mocha with dinner (the only time of the week I have any energy). I got four hours of sleep Monday night, which is not nearly enough. Then I spend the rest of the week trying to play catch up, and I am too old for this shit.

***

Did I mention our house is under construction? We're turning our one-car garage into a mother-in-law suite and building ourselves a two-car garage. Well, the construction guys are building it, and it's coming along at a pretty decent pace, from what I can tell. This week they're working on framing the roof.

Quinn loves it when the cement mixer or diggers show up on our front lawn, but after four weeks of activity the novelty of the construction itself has worn off. 

He'd rather watch Rescue Bots (which he calls "Rethcue Botsth to the Rethcue") on his iPad. Because I'm gunning for parent-of-the-year-award (they still give those out, right?) we spent all day Tuesday on the couch watching tv. I couldn't do it again yesterday, not with the incessant ham-ham-hammering going on above our heads, in my head.

***

A friend swooped in and saved my tired butt offered a play date at her house, and it was exactly what Quinn and I both needed. We may have overstayed our welcome (although I hope not). Quinn spent five hours running around their football-field-sized backyard, jumping with his friend on their trampoline, driving a "monster truck" until it ran out of batteries, until he ran out of batteries, too. Also? We've potty trained, so who needs pants when it's 75-degrees outside?

Somehow, parenting is a million times easier with two moms around. Math would insist it should be twice as easy, but no. A million. We visited lazily, the boys were happy, and Quinn came home as pooped as I was last night. It was glorious. And, finally, this week is coming to an end.

Thank you, Shannon. Next time I won't forget the wine.

My Anti-Resolution

2014 is well underway, and I feel like I'm lacking in resolutions. How about you? I think January naturally lends itself to moderation after the excesses of the holidays, but I don't know that the month needs to turn into a let's-all-feel-guilty-about-gluten, -dairy, and -alcohol party. Because a) that doesn't sound like a very fun party, and b) we carry enough guilt around with us without setting ourselves up for failure at the start of the year, right? Or maybe that's just me?

Yes, there is something incredibly rewarding about the post-holiday fridge clean-out, but that has less to do with giving-up-the-pie-for-breakfast habit and more to do with being able to find the milk on the shelf again. What does any of this have to do with cancer? Not much, unless you believe pumpkin pie gives you cancer.

{Photo credit}

On that note...

Since my diagnosis, I have gotten scores of advice regarding what to eat (or not), supplements to take, whether it's okay to have dessert or a glass of wine, all in the name of curing my cancer. There have been studies saying drinking more than three glasses of wine per week increases one's risk for breast cancer, and then studies saying survivors who drink slightly more are at a reduced risk for death from cardiovascular disease. No one tells you how any of these applies to Stage 4 patients. There are also studies suggesting higher starch intake is associated with increased breast cancer recurrence rates, so maybe I should resolve to avoid potatoes?

I used to get in a panic about it, because what if I did this to myself? What if I could make this go away based on what I ate? And maybe that is a possibility, but as a cancer patient, I've also had to balance my diet choices with what is actually palatable and with maintaining my weight, which I'm afraid would drop dangerously low if I cut out all carbs. For those of you keeping track, I'm proud to say I'm up 13 pounds from my lowest point last year. The holidays had their work cut out for them and they didn't disappoint.

I also struggle with the idea of how moderation fits into any diet that omits any food group in its entirety. Then again, if I knew going dairy-free or gluten-free or potato-free would cure cancer, I’d sign on in a heartbeat. For now, I just try to limit my intake of processed foods, drink 3 glasses or less wine a week (most weeks), and eat lots of organic veggies. For now, it seems to be working. For now, my blood work and weight and energy levels are pretty good.

After hearing it enough from various sources, though, I brought up the question of whether I should avoid all sugar to my oncologist. He told me, "All things in moderation." He explained he'd be more concerned about my sugar intake if I was obese, since fat cells produce estrogen. Because estrogen can fuel some breast cancer, including my own, excess weight can be dangerous. Otherwise, nothing wrong with a little pumpkin pie now and then.

So I haven't come up with much in the way of resolutions, but I am a sucker for a clean slate (or fridge, as the case may be), which for me is the beauty of a new year. That we get to let go--of excess, of guilt, of whatever isn't serving us or helping us be our best selves. To a small degree, we give ourselves the freedom to start over.

For me, this year anyway, my goal is to be gentler with myself. Think of it as an anti-resolution. (I'm starting a trend here, I can feel it.) My goal is to not feel guilty about having a scone for breakfast or sharing a quesadilla with Quinn for dinner--in fact, to enjoy it for who I get to share the meal with. To not beat myself up for not writing as much as I'd like, since it would often come at the expense of putting Quinn to bed and I don't want to miss that time, although I am trying to finish my book this year. To not feel so abnormal when I get fed up with my two-year-old's defiance or lose my cool and yell. Turns out, other moms feel this way (and yell at their kids sometimes), too.

I've only been at it a week, but somehow, by being gentler on myself, I've found more space to breathe, which in turn (I think) is helping me be a kinder, gentler parent and maybe even spouse. After years of practice, I'm finally, finally able to carry a little more of my yoga off the mat and into my everyday life (the trick is in the breathing, really). I have a feeling 2014 is going to be a good year.

Tell me, what are your resolutions (or anti-resolutions) for the year?