The Upside of Down

Sometimes the world feels upside down. It can be scary, but a friend once told me scary isn't always bad. There is fear in letting go, in going beyond the edge of what our minds tell us is safe, in exposing our deepest vulnerabilities, our soft bellies.

Photo by Quinn. My holding a handstand, like me, is a work in progress.

My world has certainly felt upended -- over the last few years since my diagnosis changed, yes, but also very acutely over the past few months. Is it the alignment of the planets? A midlife unraveling a la Brené Brown?

'Many scholars have proposed that the struggle at midlife is about the fear that comes with our first true glimpse of mortality. Again, wishful thinking. Midlife is not about the fear of death. Midlife is death. Tearing down the walls that we spent our entire life building is death. Like it or not, at some point during midlife, you’re going down, and after that there are only two choices: staying down or enduring rebirth.' -- Brené Brown

I suspect the latter is closer to the truth. Having already faced my mortality head-on, the remains of my walls feel as if they're crumbling, and the question staring me in the face is what is it that you're going to DO with your second chance? How are you going to SERVE? As I begin to re-engage with the advocacy community, I have felt a yearning for something...more. A greater impact and deeper meaning to the work I do, which, let's face it, most days just involves laundry, meal-planning, and entertaining a nap-resistant toddler. There is purpose in that, don't get me wrong. But I am exploring options for shifting the balance outward a smidge.

Balance doesn't always come easily. Case in point -->

I can dissect all I'm doing wrong here as far as form goes, but at least I'm laughing.

I have also been intensely focused on the mental health side of my cancer recovery these past few months. And HOLY SMOKES, you guys. I mentioned that I was exploring EMDR, a type of trauma therapy, and I promised to write about it...four months ago.

The sessions have been nothing short of intense. This work is not for sissies. Each hourlong appointment passes in what feels like just a few minutes. Every single time I am jolted back down to earth when my therapist tells me it's time to wrap up. I keep feeling like we're just getting started. Then I have weird dreams and cry at random for a few days, and I call my closest friends and ask why adulting is so damn hard sometimes. DM me if you know the answer to that.

In our first session, she asked me about my trauma, and I talked about cancer. I mentioned in passing how the sound of our bathroom exhaust fan makes my chest feel constricted and my heart race, and THAT is the snippet she wanted to focus on. I still don't know where that angst comes from, but my therapist asked me when else in my life I have felt that way. And some things came up. BOY, DID THEY COME UP. We are working through anxieties that have nothing to do with cancer yet. The unraveling is happening.

In an effort to augment my therapy appointments, and in light of Quinn's existential concerns of late, I've been meditating regularly, hiking a couple of times a week, and trying to make it to yoga on Sundays. My kids have started their own at-home practice.

This weekend, the yoga instructor, Beau, started off the class as he usually does, by imparting some wisdom, some food for thought. He said he wanted to talk to us about sharing. How he gets to know his students pretty well, that we share things with him. He said he had been teaching a class earlier in the week and two of his students were in the front row, next to each other. And he knew they were both facing some pretty tough things in their lives, and the kicker is they were both going through the same hardship but neither one knew it because we don't always open up to the people around us. Then Beau talked about a video circulating in the CrossFit community about one of their own coming out as gay, how the response to the video shows humanity and love at its greatest and most accepting, and how sharing can lead to that. I've seen that here, in this space, how a community can lift a person up when they feel at their most terrified and exposed.

Beau ended his little talk by asking us to share, if not our fears and vulnerabilities, to at least share our gratitude.  I haven't talked about my mental health much here because so much of my recovery is still in process -- but then I'm realizing it may always be, so I should get to discussing it sooner rather than later. I should share, trusting in this community, and that the ground won't be as far away as I think. If I fall, I will stand up again. You guys will help me.

Rules for Talking to Kids about Cancer, Even When the Word ‘Breast’ is Involved

This post is sponsored by Celgene Corporation to review and share information about a new app to help children understand their mother’s breast cancer diagnosis called The Magic Tree. All opinions and thoughts are my own.

How many times have I written in this space about my struggles to come up with the right words to talk to Quinn about cancer? A dozen? Fifty? Do those words even exist? Someday, I will open up to him about the extent of what we thought we were going through and about the trauma we did actually endure. He knows bits and pieces. Someday, I will tell him everything.

He is old enough now to be embarrassed when I talk about breast cancer with others around him. He whispered, “Mom, can you please stop?” when I was talking about the last few years with a new friend – the mom of one of his friends – recently. “Is it because of the word breast?” I asked him. “No, it’s just embarrassing,” he said in the way that kids eventually do about their parents’ actions and stories, and I wonder if he knows what embarrassing really means. But, he is already rolling his eyes at me here and there, so I think that he does. In any case, it makes him uncomfortable to hear me retell my cancer story, at least where someone else, like his friends, might overhear.

Wait until he finds out about this blog.

Navigating cancer treatments with kids at home, and more importantly, figuring out how to keep discussions with them (or conversations when they’re in earshot) age-appropriate is a tricky business. Is a precocious 3-year-old ready for the same information as a more mature and worldly 7-year-old? And, what I always struggled with when I was in treatment and thought my disease was terminal, how do you maintain your child’s innocence and tell him or her you might be dying?

I still don’t know all of the answers about talking to kids about cancer or death, but I have a few.

1. What rang true again and again in our family was share age appropriate truth, but don’t overshare. 
• a.  For example, when I was in treatment, Quinn was very young. When he was a toddler, I told him mommy was sick and needed medicine to make her better. But I did not tell him I might die of my sickness. It wasn’t imminent, and I didn’t feel the need to scare him more than necessary. 
2. Only answer their specific questions. 
• a.  When Quinn wanted to know why I was losing my hair, I told him the medicine was hurting the cancer inside me, but also sometimes hurt my regular cells, including my hair.
3. Related: be careful with your language. I didn’t expand to say how terrible I felt or use the word “killing” to explain how chemo was working.

I read to him from pamphlets I picked up at the hospital or books about his love being my best medicine. What all of these lacked, though, was what happened if mommy didn’t get better. I kept that dark knowledge to myself, and – as I’ve documented again and again – cried next to him after the lights went out.

What I wish I’d had in my toolbox is a more interactive and educational way to discuss cancer with Quinn. And now that he doesn’t want to hear about it, I do. Celgene has developed a new app, The Magic Tree, with short videos, a resource library for parents and cooperative games that earn decorations for the in-app tree. You can find links to download it on their web site http://magictreebreastcancer.com.

Quinn is a big fan of the games. One seems rooted in curling, the winter sport that – in our household – was a highlight of the recent Olympics. We played this game on a recent car trip giggling as we tried to push each other’s coins off a floating, spinning slice of tree trunk that sometimes has frogs on it who get in the way. “Silly frogs!” we joked. This cooperative game comes under the “Is It My Fault?” section, and I thought it was a brilliant idea to have something where parent and child can play together just after a video explaining it is absolutely not the child’s fault his mom got cancer.

There is a lot of wonderful animation that will appeal to kids as they learn about chemotherapy, biopsies, baldness, radiation and side effects in a non-scary way. It offers prompts for kids to talk about their feelings or any questions they might have with their parents or other family members. It does not leave out metastases, but keeps the discussion of it short and matter-of-fact. Videos are all around two minutes long, so will hold this age group’s attention span.



The app is aimed at children aged 5-8, so it would have probably missed the mark when Quinn was a toddler and could have benefited from a tool like this. I also noticed only traditional nuclear families are pictured, and it is only aimed at moms who get breast cancer (despite the fact that, while rare, men get breast cancer, too).

Even though I’m not in treatment for cancer anymore, I’m going to keep using The Magic Tree with Quinn to prompt our discussions of cancer, to help us both process what our family went through.

The End of the World As We Know It

I have quite clearly been at a loss for words these past few weeks. Well, I've had words, but most of them aren't fit to print. "WTF?!" doesn't exactly make for constructive dialogue.

As I transition out of my role of full-time cancer patient and into whatever comes next: survivor, I suppose, though that is still such a strange word for me; advocate, about which I hope to write more soon; and adjunct law professor teaching international law twice a week (yes, really), I'm still trying to find my footing in a post-MBC world, and now, also, in a post-factual one, too.

And while this is a breast cancer blog that's sometimes about parenting or research or even finances or sexuality or grief, I cannot ignore my past as a lawyer/lobbyist and the dire threat to healthcare -- and our constitution itself -- that now exists. So this may also become a blog about policy and politics, too, to some extent. Just a fair warning for my readers because I'm sure that not all of you share my voting record or worldview. I hope you'll stick around regardless. At the end of the day, we're all in this together. I welcome debate here (or in person!); just please keep it civil.

For those of us who are friends on Facebook or other social media, you might have seen my statement shortly after the election that Trump's win felt oddly similar to being diagnosed with cancer. The cold fear was familiar to me, as was the sense that I had just lost control and my innocence in one fell swoop.


Here's the deal: I am not a "snowflake," as some people are characterizing those of us expressing our sadness at what our country is facing: the potential loss of the rule of law and human rights, or respect for free speech and science. Our grief is warranted. I am no withering petal.

No one gets through nearly 5 years of cancer treatment without some deep resolve and fortitude.

My opposition to the new administration is not a partisan matter. I am a patriot. I studied history and the law, marveling at our founding fathers and the lasting power of our Constitution. I grew up in a military household where the Fourth of July was almost as important as Christmas. I can't really carry a tune (ask Chris), but I hummed along to Lee Greenwood's anthem with tears of pride in my eyes every summer.

This American "experiment" we've been involved in for the past 240 years? I want to see it endure. I believe in it, flaws and all.

One of my students asked me the other day whether I thought the new administration's actions were hurting our standing in the world, and if so, what we could do to correct this course. My answer was strangely similar to what I'd tell a newly diagnosed cancer patient, and at least one (conservative) author seems to agree with me.

I told her we need to continue to speak up for our beliefs and interests. I would tell a cancer patient she has to be her own best advocate. The protests and boycotts and what one friend tells me are hundreds of thousands of calls per hour to congressional phone lines are making a difference. We are being heard. It is an uphill climb, but I'd argue our lives and liberty are worth it.

Elliot Cohen writes:

[A]ll can dedicate themselves to restoring the qualities upon which this republic, like all republics depends: on reverence for the truth; on a sober patriotism grounded in duty, moderation, respect for law, commitment to tradition, knowledge of our history, and open-mindedness.

On the other end of the spectrum, all of this advocacy, just like being a patient, can be exhausting. It is SO important to engage in self-care. Get enough sleep, even if it means resorting to a tablet of Benadryl (note, I am NOT a doctor, and this is not meant to be medical advice). Exercise regularly. My guess is boxing classes will be filling up quickly as more and more of us feel the need to punch something. Eat plenty of vegetables, even when you feel nauseated. It is important to refuel yourself to get back into the arena, for this will be a long, drawn-out match.

We don't want to burn ourselves out. We have so much work to do. We have been knocked down (and I don't mean liberals, I mean our very democracy). We must stand up again and again and again, like the old Japanese proverb says. Ask any cancer patient.

What to Eat During Chemotherapy

I kind of can't believe I've had a blog about living with breast cancer for more than FOUR YEARS now, and I haven't done a post about what to eat when you're going through chemo. I don't think. If I already have, go ahead and chalk it up to chemobrain. I've done posts about that, right?

Hint about what to eat: it's whatever you can stomach. 

Right now, even the word stomach sort of makes me want to vomit. I had treatment yesterday, and even though I'm on antibody-drug conjugate -- a targeted chemotherapy delivery method that isn't nearly as bad as the broad spectrum drugs I used to receive (I'm talking to you, carboplatin and taxotere) -- there are still some side effects. I've talked about the fatigue. I've probably talked about the nausea in passing.

But I don't know if I've talked about any solutions.

Here's what works for me (sometimes).

Zofran and/or Compazine: This is not the time to avoid medicines that can offer serious relief, with the important caveat (and possibly too much information) that anti-nausea meds can cause headaches and constipation, so you may want to do some cost-benefit analyses.

Ginger: Trader Joe's carries a great Ginger Beer (non-alcoholic, don't worry) that works wonders for staving off the waves of nausea. They also have some ginger chews that help when nothing else seems to.

Water: It's about the last thing I want in the days after my treatment (think how terrible a tall glass of water sounds when you're hungover), but water, especially with electrolytes, helps flush your system and is one of the truest ways I've found to feel better faster. When I was on broad-spectrum chemotherapy, I resorted to -- gasp! -- Gatorade or popsicles when my mouth sores were out of control. I know, sugar is evil, but sometimes it's a necessary evil. Kind of like chemo.

Smoothies: Fresh vegetables sound downright repulsive in the days after treatment, as good as I know they are for me and as much as I know my body needs the vitamins and nutrients to heal. So I've jumped on the smoothie bandwagon and make a version many mornings of the week. Bonus: it's one of the only ways I've found to get Quinn to "eat" his greens. Win/win.

Green Smoothie
Serves 1-2

1-2 ripe bananas
large handful of spinach and/or kale leaves
generous splash of orange juice or almond milk
1/2-1 cup other fruit of choice -- pineapple, mango, apple, or a combination
ice cubes

Throw everything in a blender and blend until smooth, then adjust taste to your liking. Sometimes I add a scoop of vanilla protein powder or a handful of raw almonds.

Banana Bread Smoothie
Serves 1-2

1 c. almond milk (I like unsweetened vanilla)
1-2 bananas
1-2 Tbsp. almond butter
ice cubes

Blend until smooth. Top with grated nutmeg, if you like. I serve mine with a colorful straw because it makes me smile.

Comfort Foods: This isn't the time to be concerned about your diet. Of course you want to be as healthy as possible, but sometimes homemade mac-and-cheese or stuffed shells are the only things that sound appetizing. I will say beware of tomatoes and tomato sauces, especially on broad-spectrum chemotherapies that can alter your taste buds and leave you with mouth sores. Acidity is not your friend on those drugs. But some soft pasta in a homemade salty chicken broth with sweet bites of chopped carrots? That could get me through some terrible queasiness.

Medical Marijuana: (NB: I have not tried this because I am prone to anxiety, in the past marijuana has tended to bring out the paranoid in me, and I do not need more of that in my life.) I have heard though that medical marijuana can work wonders for spurring a person's appetite. I am in favor of whatever works so you can keep your strength through treatment.

***

If all else fails, remember this:

Cancer isn't everything. Even on post-treatment days when the nausea feels overwhelming, tomorrow will be better. #truth #optimism

A photo posted by Jen Campisano (@jencampisano) on Sep 9, 2015 at 12:01pm PDT

What are your go-to recipes when you're feeling hungover from treatment? Do you have any favorite cookbooks? What alternative solutions have you tried to ease your nausea (or other treatment-related side-effects)?

What I Wish I'd Known When I Was First Diagnosed

A few months ago, after being asked for the umpteenth time what advice I'd give to someone newly diagnosed with advanced breast cancer, I reached out to pose the question to the women in my online support groups.

I can never think of just one answer to this question. I say things like:

• Be your own advocate.
• Ask for help from those who love you. 
• Try to make the most of each day, even when you feel terrible. 

But it never feels like quite enough. So here's what other women who've been down this rough road have to say on the matter.

{photo credit}

Find support! Cancer is hard and stage 4 is even harder. I always suggest breastcancer.org. -- Jenny

Prioritize carefully. -- Jimmie 

I've been sitting here for 15 minutes, trying think of some all-encompassing wise thing to say, and I've got nothing. But I fully agree with "find support". I was completely unaware that groups like this existed for the first 8 months of my diagnosis. I wish I'd been able to connect with other stage IV women sooner! -- Marisa

I have nothing profound. I tell them: 1. Breathe 2. Worry when you have to 3. One day, one step at a time. -- Leslie

The only thing that I can think of is Do Not Stop living your life. What you loved doing before do it after the diagnosis. -- Chantal

get rid of drama (including people)....simplify.....and live your own truth, your way, in your time. This is no one else's life but yours. -- Lesley

Don't look at statistics, don't read negative stories. Everybody has their own race to run, and many of us live a long time with mets. Mine is liver and I'm 6 years and going strong. Not without some seriously rough patches - but you never know if you'll be in that category. Live your life, enjoy your days and try not to live in the future. -- Ann

Learn to advocate for yourself. -- Karen

Don't be afraid to ask your doctor to prescribe something for anxiety. The first few months are really hard. Allow yourself to grieve, but not forever. Surround yourself with people who lift you up and find things that make you happy. -- Donda

Something for anxiety AND a sleep aid. -- Susan

Each day is a gift no matter your circumstances. And really thinking that everyone is terminal in a sense helped me as well. No one really knows how long they have, no one! -- Emily

I always stress the second opinion and finding Doctors you have full confidence in. -- Colleen

Don't just try traditional medication. Go Asian, drink juice, exercise, and pray...pray like never before! -- Melanie

LIVE, LAUGH, LOVE, each and every day, I am. -- Theresa

Get copies of the pathology reports, join an online group such as this one, and ask how long people are surviving with this disease, particularly those with similar dx. You may be looking at several years rather than months. It took a long time to understand that at first. -- Theresa

Keep meticulous records of drugs & reactions. You may end up on the same drug again in the future. Always get a copy of your scans on a disk. Keep all reports, especially pathology! -- Lynn


The first year will most likely be the most difficult for acceptance/denial. Look into disability benefits early and start making fun plans! -- Bethany

There is life after the diagnosis, and it's possible to live a good life despite the prognosis. We are not a statistic, and don't ever think that you will fall into the stats. Day by day, moment by moment, relish it and enjoy the little things...always find a snippet to your day that brings a smile to your face. Cancer will not define me as a person, but it will enhance the way in which I choose to live. -- Judit

Ignore all statistics. I have been enjoying a good quality of life for 4 yrs, still working, traveling, having fun. Everyone has a different cancer journey. But, the first year is definitely the hardest! -- Donna

Mine to share would be to "Expectations breed limitations...be present!" Finding yourself and trusting yourself is very liberating. -- Wendy

You MUST be your own advocate. -- Jody

Be your own best advocate. Research, read and ASK QUESTIONS!! -- Tricia

I'd tell them it is not over. Keep going, keep getting out of bed everyday and trying. It is possible for women to live several years with Stage IV cancer. -- Jaymi

Absolutely be your own advocate AND remove all negative people from your life. -- MaryAnne

We never have another chance at today, so make the best of it! -- Catherine

I would recommend getting multiple opinions on route of treatment. It is hard to not want to rush into something, but a second opinion on how to get started can help set your mind at ease (I ended up waiting 4 months for a second opinion and wish I had done it at first). -- Mandi

LIVE every day! -- Kelly

Find a doctor you love and trust. It makes the ride less horrible. -- Beth

Get a therapist if you don't have one already. Metastatic disease takes you to dark places; you need someone who will not only go there with you, but who will remember to bring the flashlight so you can both come back again. -- Kathleen

Take a deep breath and a step back. Your life isn't over yet. Live each day to the fullest. If you can do a happy dance then DO IT WELL and if all you can do is lie and feel weak then it's time to read that book you've been meaning to or watching a good comedy. Get your paperwork in order but don't pay the undertaker just yet....you're probably going to be around much longer than what you think. -- Annelie

I would add to make sure you have a great support system around you. From family to friends to medical to other supports. -- Laura

Don't panic. -- Anne

BREATHE! -- Jessica

Another Doctor's Visit and a PSA

Sadly, being diagnosed with one type of cancer does not make you immune to other cancers. Radiation treatment can lead to an increased chance of thyroid and skin cancers. Certain genetic mutations mean that some women are prone to getting both breast and ovarian cancers (see: Angelina Jolie). Because my dad was diagnosed with melanoma in 2012, I am at an increased risk of skin cancer, too.

It didn't help that I lived in Hawaii from 1982-85 (although it is still my happy place, sunshine be damned), sandwiched by stints in southeastern Alabama (more sunshine). Later, in high school, I lived in Florida and spent almost every weekend at the beach or the pool. And then a bunch of us in college used to get set for spring break with weekly visits to a cheap tanning bed up the street from our university. For a base tan, we told ourselves.

Then we sat on a catamaran in Jamaica and got fried anyway because base tans don't protect against burns, it turns out. I mean, look at this godawful "tan" line of mine, circa 1998 in Jamaica. (I should have at least kept wearing the same swimsuit every day. Oh, the advice I would like to share with my younger self...)

Here's the thing: I don't remember ever wearing sunscreen until my twenties, although I must have. Right...? Mom?

These days, I'm religious about it, especially living in Arizona. And I am always hopeful that the damage hasn't already been done. Because wouldn't that be the pits? To survive stage four breast cancer only to be taken down by a wayward mole?

So when a spot on my nose started looking weird a couple of weeks ago, I made an appointment with a dermatologist. This spot was pink and looking pinker, and I strongly suspected basal cell carcinoma. Because that's where my mind goes after what I've been through. And even though basal cell carcinoma is a highly treatable form of skin cancer, it's still cancer. On my face.

Except it wasn't. It isn't. The spot on my nose is a sun spot (so damage, yes) combined with a broken capillary underneath that is making it appear pink. Nothing a little concealer can't hide, or -- if I'm feeling really vain -- have fixed by laser treatment down the road. I had a full body scan, too, and everything looks okay.

I was a nervous wreck undressing for that doctor, though. Because I couldn't help thinking about how horrible it was to hear, "You've got cancer," the first time. I was scared out of my wits about living through those three words again.

So here's my little public service announcement: wear sunscreen. Every day. Put it on your kids, too. Don't go to tanning beds, ever. Maybe cover up a bit if you're going to be on a catamaran in Jamaica and drinking too much rum punch. And -- as always -- even if you seem crazy to everyone around you, if something seems weird on your body, please please please get it checked out. Please.

You can now go back to your regularly-scheduled programming.

"Mommy, Are You Dying?"

I had chemo this week, on Monday. As usual, I've been in a type of fog all week. My mother-in-law is here visiting, and asked me to describe it. She wanted to understand what I was experiencing, and, by extension, what my father-in-law might have experienced when he was being treated for pancreatic cancer.

I struggled for the right words, but came up with this: "I just feel like my head is in the clouds."

It's like my thoughts are fluttering types of insects now, buzzing all over the place without ever standing still long enough for me to grab hold of one. As chemo week ends, it gets slightly better, but I'm not sure I fully recover between infusions.

And I struggle with how to manage my emotions, how to answer difficult questions, how to be a more present parent.

***

After chemo on Monday, I thought I could take Quinn and my mother-in-law grocery shopping with me, so that Chris could get some work done. And I don't know if Quinn is going through a growth spurt or this is just him being three or me getting chemo, but mid-afternoons have been rough for us lately. Like he needs a nap but the best I can hope for is some downtime in front of the t.v. for an hour. 

So pumped up on steroids and not yet starting to feel any side effects (I didn't think), I attempted to take my 3-year-old to the grocery store. It was exceptionally crowded at Trader Joe's, and I tried to convince Q to sit in the seat of my cart rather than get his own cart -- those miniature ones that TJ's offers for kids, which are such an adorable idea in theory. But Quinn would not be deterred, and I didn't think I was up for the fight. I told him he could have his own but he had to stay right next to me. He said he would.

I can see so many of you with kids already know where this is going.

First thing inside, right next to the salads, as I was trying to navigate the limited space between the employee restocking shelves and the elderly couple in front of me, Quinn started ramming his little mini-cart into my ankles. To his credit, he was staying right next to me. "Please stop, buddy," I asked him gently a couple of times. He didn't. My ankles were taking a beating. "Quinn, if you don't stop, you're going to have to sit in my cart," I reminded him, my voice getting more stern as I got more annoyed.

People were starting to stare at us. My son had already turned this into a game in his head. (He told me later he was just trying to be silly.)

I couldn't do it. Not on steroids, not after chemo, not in a crowded store. So I picked him up -- at which point he started screaming and kicking -- and said nevermind, we were going to skip grocery shopping that day. He kicked a shoe off in the parking lot on our way back to the car. A stranger kindly picked it up for us. He refused to sit in his carseat. It was close to 100-degrees outside, and I was out of breath from the walk to the car with a flailing child in my hands. I was also out of patience. He kicked me in the ribs as I tried to wrestle him into his carseat.

Nearly HALF AN HOUR went by. He was screaming, I was crying, cars were lining up waiting to pull into my spot as I tried to wave them along. I called Chris, who says I was so hysterical he thought I'd gotten into an accident. And then I growled at Quinn in a voice that sounded (even to my own ears) like I was possessed to GET IN YOUR DAMN CARSEAT. He finally relented. 

Thank you, chemo and steroids, for making me realize that I can, in fact, growl at this three-year-old (in front of my mother-in-law, no less). This is not the parent I want to be.

We both calmed down on the ride home, and we talked about what went wrong. Quinn and I promised each other we'd make the next day better (and we did). 

This, after my nurses cut my steroid dose in half a couple of sessions ago so that I would have less emotional reactions on my chemo weeks. The flip-side is my chemo side effects are bigger and badder, and I'm pretty certain I still have 'roid rage. 

I have felt terrible most of this week, because that's what chemo does with less medication to offset it. A doctor I follow on Twitter suggested asking my oncologist about not taking steroids at all, to take the emotional effects out of the equation. Or it could also be that, after seventeen months on this drug, its effects are building up in my system and this is just the way it is.

***

Fast-forward to this morning. Quinn woke up next to me (as he is wont to do; he inevitably sneaks in at some point in the middle of the night), and sweetly asked for a hug. Then we had this conversation: 

"Mommy, why are you a little bit sad?" I hadn't been feeling a little bit sad, I didn't think. Nostalgic, if anything.

"Because you're growing up so fast, and I want to remember all of it," I said and smiled at him. 

"Well, I'll remember it!" he promised. Then, this zinger: "Mommy, are you dying?"

I hugged him tighter so he wouldn't see the tears that immediately came to my eyes, the emotion that made me feel like my chest might crack in two. "Not anytime soon, honey," I told him.

"I want to remember when you die," he said. Then, "What does 'dying' mean?" Why did we have to have this conversation at 7:15 on a Friday? 

"It means when someone's not here with us anymore," I tried.

"Oh." He thought for a minute. "But I want you to stay here with me in this house forever!" 

"I want to, too, buddy. I'll stay as long as I can, okay?"

***

Man, it's been a long week. Here's to easier conversations and fewer side effects and being a more mindful parent in the weeks ahead. Other parents, how do you talk to your toddlers about cancer? How do you manage your side effects with children around? And, finally -- more steroids or less?

Swimsuit Season

I know, I know--some of you are still wondering whether it's finally, really okay to put the snow shovels away for the season, and here I am about to talk about swimsuits. What am I? Heartless? I can't help it, you guys. It is NINETY-SEVEN DEGREES here today, and that is not a fluke, not a one-day oopsie-daisy. We are this close to triple digits, which means we are also this close to swimming pool weather. Right now, the water is still just a tad too cold because the air still cools down into the 50s/60s at night here. Come August, the pool will feel like a hot tub and I'll be begging Chris for a plane ticket to Seattle.

A couple of years ago, I bought a few bikinis at Target. I didn't give much thought to them because I was just happy to be healthy enough to enjoy the water with Quinn, to vacation in Mexico with him and Chris. I had my expanders in then, and despite their coconuts-on-a-board appearance, I was hardly self-conscious because I was alive. People could think I got a terrible boob job--let them! I thought.

After a couple of years of sun and chlorine and toddler tugging, my Target swimsuits need replacing, and suddenly I am feeling very stuck. I'm self-conscious about the port in my chest (whereas it didn't even cross my mind a couple years ago), so I'm looking at halter styles or a one-shouldered suit that might strategically hide the darn thing. I'm anxious about sun exposure post-radiation, so luckily rash guards are everywhere. I used to gravitate toward string bikinis because you can adjust them so there are no unnecessary lumpy parts, but I'm second-guessing myself with Quinn, who is at perfect string-pulling height.

And then I think: I'm being ridiculous and should just wear whatever stays put best with a toddler climbing on me in the water. Your kids do that too, right? Use your bikini bottoms as a step-stool? 

I picked out a couple of suits at Target last weekend to get me through the first few pool days, but the only one that fit is a total mom suit. "I'm sure you can do better than that," Chris told me. A mom at Quinn's swimming lessons recommended Victoria's Secret, but that seems too...spring-breaky, too young, too sexy for what I've got in mind. I've browsed online at J. Crew, Athleta, and Canvas by Land's End, but nothing is grabbing me, although I've gone back to these ones for a second glance. 

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And it is wonderful to occupy my brain with something so trivial as a new swimsuit. I do realize this. Don't fret: I have scans coming up in a couple of weeks, so I'll get back to discussing my anxiety and mortality soon enough. 

But seriously, I'd love your thoughts. Where else do you shop for suits that are reasonably-priced? Do more expensive suits hold up longer? If you've had a mastectomy/reconstruction or a port, does that affect your swimsuit style? Does having kids influence your choice of swimwear? Because I'm thinking I won't be such a jungle gym in a one-piece. And do you hate me for mentioning pool weather this early in the year, after the winter most of you have had? 

Cancer Has Made Me Socially Awkward

It has been six years since I moved to Arizona, after spending most of my twenties in Washington, DC. DC is a vibrant, transient city, full of young people eager to make a difference, people who care about current events and issues affecting our country; it's a city full of history, culture, and possibilities. (So...the opposite of Phoenix--I joke! Sort of!) I met my husband in DC, so I'm a little partial to that city.

And the thing about a city so densely populated, so full of youth and energy and drive, is that it was easy to meet people. Chris jokes that my job as a lobbyist was primarily about happy hours, and he's not totally wrong. Everyone wanted to network, so one new acquaintance led to ten others. And then some of those acquaintances became some of my best friends. Or maybe it was just about being in my twenties? 

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Our life is decidedly different now, and it would be easy to blame our relative lack of social interactions on becoming parents or getting diagnosed with breast cancer. In fact, having Quinn has probably improved our social life, as we meet parents from Quinn's preschool and get invited to toddler birthday parties (hey, it's an invitation and it usually involves cake). 

I am not the first person to lament the culture shock that comes with a move to Arizona from just about anywhere else. It quickly becomes a topic of conversation at most events we do attend. The question boils down to: why is it so hard to make connections here? 

Part of it is the sprawl, as Phoenix stretches for seemingly hundreds of miles in every direction. I met a couple of women at Quinn's swim school who seemed really cool, then found out they lived in "the Avenues," meaning west Phoenix, meaning a good forty-five minutes from our house just east of central Phoenix, so we didn't even bother to exchange numbers. Friendships here are often geographically unrealistic, and so they don't get off the ground. 

Part of it is the heat, as everyone goes into hibernation (or leaves town) during the unbearable summers here. We hardly even saw our next-door neighbors last summer because we all move from air-conditioned house to air-conditioned car (parked in a garage, if you're lucky) to air-conditioned store/movie theater/office. 115 degrees is too hot for small talk. 

Part of it is the culture (or lack thereof). It exists here, but you have to seek it out and even then the results can be disappointing (see: food and wine festival we went to a few years ago that was essentially an excuse to wear minimal clothing (or show off surgically-enhanced assets) and drink at a park during the day. Five weeks post-partum, this was not the culture I'd been looking for). 

But mostly--I think--it's the sprawl and the heat. Friendships here take an amount of effort and planning that ones in DC never required. 

DC is full of politicians and has terrible parking, though, so it's not perfect.

And I didn't mean to turn this into a post about how hard it is to connect with people in Phoenix. After six years, I have formed some really outstanding friendships with people I've met through Chris's job at ASU and my yoga community and Quinn's school. I have other moms I can call on for help when I'm feeling overwhelmed or friends I can invite over for a (relatively) impromptu dinner. Our social life is quite different than it was ten years ago, but I'm okay with that. 

What I want to talk about is what happens when I do meet new people here, and this is a direct consequence of cancer: I never know when or how it's appropriate to share my health history with others. I feel awkward and insecure, which is not typical for me. I went to three different high schools. I know what it's like to be the new girl, know how to make small talk with strangers. Or at least I did. Now I can be found milling awkwardly over the guacamole and chips while others mingle. I can't be the only woman living with Stage 4 cancer who has this problem, right?

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A family in our neighborhood hosted a block party over the weekend and I met a couple of new faces. One woman complimented me on my haircut. Do I mention cancer? I wondered. Ultimately, I did, saying this was grow-out from chemo and I'm not quite sure what to do with it in this in-between phase. "Oh, I'm so glad you're a survivor!" she responded. And then I wondered whether I should explain further--that, actually, I'm still in treatment, and I'm not completely comfortable with that word. But I didn't. I just smiled and said, "Yeah, me too." A version of this exchange happens pretty frequently. More and more, as my hair gets longer, I'm less inclined to mention cancer, but should I? Do I then become that weird cancer woman who doesn't talk about anything else? Am I already her?

Another neighbor standing nearby chimed in: "Oh, I just did the 3-day walk! It was so inspiring!" See? Cancer makes everyone awkward. I did resist the urge to get on my soap box about the evil empire Komen. 

Another couple of women at the potluck had seven children under the age of seven between them, and asked the inevitable question of whether we were going to have more. What should I say? I debated saying I couldn't get pregnant because of health issues, but I didn't. I just said we had our hands full with one for now. I felt like I was admitting defeat to these super producers of little humans, like I am a lesser being because I don't know if I could handle more kids and here they were with three or four each. But I don't want every conversation to be about cancer.

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Yet another woman asked whether I worked and whether Quinn was in preschool. No and yes were my answers. "He's in school a couple days a week because I have some health issues and need the extra help so I can make it to all my doctors appointments," I said. Or something like that. I skirted the issue, which felt disingenuous. Should I have just talked about how good I think it is for his social development? Probably.

I'd love to hear your thoughts on this. Because lately, cancer has been making me feel awkward, insecure, and insincere. All good qualities for sparking friendships, right? So. . . short of becoming more of a recluse, how do I navigate this weird space I'm in where I look mostly healthy but have treatments and am on disability and still live with this disease all the damn time? 

Hey, at least I don't have to worry about dating.

Throwing Spaghetti at the Wall

For our fifth wedding anniversary last month, I had my makeup done professionally. Chris and I were going out to dinner, and I wanted my eyebrows to look better than when I do them myself. Nearly a year post-chemo-chemo (which is how I might have to refer to it from here on out), I have to shave my legs twice a week but my eyebrows and eyelashes remain scarce.

Cancer, you're an unfair bitch, you know that?

Here's the best photo we took that night, which isn't all that great (poor lighting, taken by the babysitter using my phone after Chris and I split a bottle of wine at dinner), but I am happy with my eye makeup. And my handsome husband.

As I was being beautified for my date, I got to talking with the makeup artist about cancer. His brother is a colon cancer survivor, and he was curious about what I was going through. I explained that mine was Stage 4 from the beginning, so I'm still in treatment. 

And as he was applying my blush, he followed up with this zinger: "Didn't you feel a lump or anything?" which is kind of like asking a lung cancer patient whether they'd been a smoker. 

This question, these types of questions get to the heart of so many excruciating feelings I carry with me (but am trying to shed). Why didn't I catch it sooner? What did I do wrong? Why me?

This question, these types of questions are looking for a smoking gun. I get it. We want to be able to explain cancer, to find the thing that makes us different so we can assure ourselves cancer won't happen to us. We want to have control. 

It isn't easy to accept such a monumental lack of control. That is part of what makes cancer -- and life, if you want to extrapolate -- so frightening. So I control the things I have any say over: my attitude (sometimes), how I spend my time, who I surround myself with, what treatments I undergo, how much wine and chocolate I consume. What I cannot control is how any of those things will affect my outcome. Simply, I cannot control how long I'll live. I'm not that much of a superwoman. Yet.

When you're given a cancer diagnosis, though, you get bombarded with a million suggestions about what to eat (or not), what type of medicine to take, who to pray to, which surgeries to endure -- in order to (presumably) live a longer life. In order to pretend you've got some control. 

Maybe I wouldn't have gotten cancer if I'd eaten less pasta, but I like pasta. And I know plenty of people who eat more carbs than I do and never develop cancer. Maybe I could get rid of my cancer if I had more Vitamin C (or D, I forget) in my diet, but so far as I can tell, the science isn't there. In fact, my oncologist and my naturopath have given me the absolute opposite advice about my Vitamin C intake, so I take a multivitamin and drink the occasional glass of orange juice, but I haven't opted for intravenous infusions of it. And maybe my double mastectomy was superfluous, as one oncologist suggested months after I'd had both my breasts amputated, but you know what? The surgery made me feel safer. 

I go through periods of extreme second-guessing about what I could have done to bring this on. Then I stop beating myself up and remember the numbers. Also: why anyone? Here's the hard truth: one in eight women will get breast cancer. One in thirty-six will die from it. A harder truth? Half of all men and one in three women will get some form of cancer in their lifetime. Cells mutate for inexplicable reasons -- whether we practice yoga or never eat fast food or take our makeup off every night before bed. We can follow all the rules and still get cancer. It is that random.

We can pay attention to our bodies, we can catch cancer earlier if we're lucky, we can even prevent some types of cancer, and we can take care of ourselves so that our bodies are equipped as best as they can be to fight off disease. And then cancer may still show up unannounced, may still metastasize, may still take us from the people we love much earlier than we'd like. We simply do not know how to stop that from happening. Yet.

When you're given a cancer diagnosis, you do what you can to get through, even if you're just throwing a whole bunch of spaghetti at the wall and hoping some of it sticks. Plus, sometimes throwing things at walls is exactly what you need after a cancer diagnosis.