Who wears a wig to Pilates anyway?

Wasn't it just Christmas? Where did January go? How are the Seahawks not in the Super Bowl?

I've spent January mourning the losses in our metastatic community, trying to enjoy sleep-deprived new-puppy-parenthood, briefly visiting my brother and his family in Spokane, and making room for a few other advocacy endeavors I've got going (stay tuned!) Not to mention start-of-the-year doctors' visits, dental check-ups, and a biopsy of a weird spot on my elbow thanks to an overly-cautious dermatologist.

I haven't found much time to collect my thoughts these past few weeks. I've been waiting for my words to come back. Waiting for my anger to subside.

Related, I find, to letting go of some anger is me trying to work on my patience. It was my one resolution for 2016. As one mama put it on theglow.com:

"I wish I was better at patience. I had a lot of it when it was just River, but I physically feel my patience going throughout the day, in a way it used to not go. Sometimes I have to lock myself in a bathroom to gather it up again. And it isn't just the kids, it's life. Kids with life, it's a lot, and takes a toll on your patience. I try to think in my head a lot when I feel myself getting frazzled. It's good to just check in with my inner self and remind it that nothing is more important than the right now, so focus on right now." - honest and beautiful words from @latonyayvette which resonate deeply with all mamas as we try to be in the moment with our kids #theglow #motherhood #honesty #patience #inthemoment

A photo posted by The Glow (@theglowdotcom) on Jan 25, 2016 at 6:49pm PST

"Nothing is more important than the right now, so focus on right now." Yes, a million times this.

Last night I dreamt that I had a bad PET scan, even though I'm not due to cross that bridge for another couple of months. I dreamt that I had to start broad-spectrum chemo again, that I was losing my hair but didn't tell anyone until my friend noticed I was wearing a wig at Pilates. I woke myself up crying. Scared. Angry. Quinn was in our bed, between Chris and me, and I snuggled up against him, inhaling his little boy scent, feeling the reality of his warmth and the steadiness of his breath until I was able to steady my own. It was -- for now -- just a bad dream.

Nothing is more important than the right now, even at 3:30 in the morning. But, man, do cancer and mortality and friends dying know how to mess with a girl's subconscious. My nurse (and friend) at my infusion center tells me there's a pattern to these deaths, that she's been doing this long enough to know January is the worst. People set goals for the holidays.

In that case, I'm setting a goal for Christmas of 2074.

I hope to get back to some sort of regularity here sometime soon, but in the meantime I've been busy focusing on the right now -- busy with soccer practices and birthday parties and puppy hikes (much shorter than regular hikes) and trying to think of ways to better serve this metastatic community to which I belong. As I said, I have some things brewing. I hope they'll pan out. I hope they'll make you guys proud. Please bear with me.

A Million Thousand Hundred Times

The other night, as I was tucking Quinn into bed, I overheard him whispering to his favorite stuffed animal, Bunny.

"Mom, I was telling Bunny how much I love you."

"I heard..."

"I love you a million thousand hundred times," he said. Sometimes it's "to Pluto and back" or "to the Milky Way and back" or "to all of the planets in all of the galaxies." We have a theme.

"I love you that much, too," I replied, my throat catching. Some nights, his sweetness just floors me. Especially when I've got another scan around the corner and he is seeming to grow up more with each passing day. Can I freeze time? Keep that one tender moment locked in the safe space of my heart forever? Keep all of them there?


Quinn Tornado from Jennifer Campisano on Vimeo.

When I was diagnosed, I wasn't entirely sure I'd get to be here right now. In fact, I had a dream shortly after -- sometime in the fall of 2011 -- of  a toddler Quinn holding someone's hand at a funeral I was pretty sure was my own. The statistics said I had a one in five chance of living to see Quinn turn five, let alone see him start kindergarten. Only twenty percent of women in my situation would make it to the five year mark.

This week, Chris and I have toured three different elementary schools trying to decide where to send Quinn for kindergarten next year. For another time: when did choosing a kindergarten get so complicated?

But kindergarten. My boy.

And me. Maybe just maybe going to get the chance to buy him a new backpack next summer, go school supply shopping with him, see all that he has to show us as he learns even more clearly how to express himself.

It could happen.

Getting Our Affairs in Order

Shame on us, really, because we should have done this years ago. Along with finishing Quinn's baby book and organizing our family photos. See, also: throwing away leftover Halloween candy, drinking more water, and stepping up my cardio game.

But with the death of both of Chris's parents in the last few years (his mom just this summer), not to mention my string of luck health-wise in 2011, 2012, and 2013, it became more and more clear we needed to have our affairs in order. It sounds so final, to "get your affairs in order," but really, it's just the smart thing to do. I'm not planning on dying anytime soon, but you never know. That proverbial bus seems to be all over the place these days.

Also, I'm a lawyer. I know it's important to have an estate plan, if only to keep the courts out of things at the end of your life. Lord knows I don't want some Arizona probate court deciding what becomes of this guy, god forbid and fingers crossed and knock on wood. 

So we met with an attorney, who will draft a plan for us and set things up so that Quinn will be okay even if Chris and I both get hit by a bus. 

I held myself together through the meeting, despite having to talk about what happens if Chris (or I) remarries, who makes decisions if one of us is on life-support, who would get custody of Quinn, and whether you can legally enforce requests for certain included elements at a memorial service, such as the singing of "Ave Maria." (I think this last one was Chris's attempt to lighten the mood. I was trying not to choke on the knot growing at the back of my throat.) 

I know in lots of ways these are first-world problems. We have a house, we are educated and have a college fund for our son, and we have family to care for him should something happen to both of us, which is admittedly unlikely. But something about incurable cancer and making very concrete plans for the end of your life and having scans in two weeks came together to have me ugly crying in my husband's arms this weekend, asking him who would remember snack days at school for Quinn, or register him for soccer and swimming (and make sure he gets to both), or put notes in his lunch telling him how much he is loved? And would he remember that I'd done any of these things for him? Would he remember me? 

Oh, yes, I went there. 

My death is not imminent, I don't think. I am getting to be Quinn's mom, which has made me the luckiest person on the planet these last four-and-a-half years. Mostly, things are pretty good here. Other than cancer, I can't complain! Which is along the lines of the question, "Otherwise, Mrs. Lincoln, how was the play?"

But, oh, can mortality be a terrifying thing. 

I'm sure I'll be a better mom in November

WE'VE ALMOST DONE IT!!! October is just about done. And thank god, except it means my November scans are right around the corner.

Since my diagnosis, not a day has gone by that I haven't thought of breast cancer, at least a little bit, but that is amplified SO LOUD in October, and not always in ways that help. Then scanxiety sets in (albeit on the early side AGAIN this time around) and I start popping Xanax every night like it's a vitamin. I am so lucky in so many ways, but also so tired sometimes. This disease can wear you out.

In my frustration with things like the NFL fining one of its players for trying to honor his dead mother and my general October-and-scan-induced edginess, I've found myself having to explain to Quinn what it means to have a short fuse because mine has been downright itsy-bitsy. 

I haven't felt like the best mom, and this blog post about swearing in front of your children hit very, very, very close to home.

In front of Quinn, I try to say "sugarfoot" or "son of a gun" or "fudge knuckle" or some other hokey variation on actual swear words but I don't always get it right because that is not always what I actually deep-down WANT to say. And I don't ever swear at Quinn, so much as say things like, "You're smart. USE YOUR BRAIN," when he's asked me why he has to use his napkin instead of his shirt for the twelve-thousandth time. So that's not exactly nice parenting. And then I might swear AT traffic when Quinn is in the car with me, and I don't know if that's any better. 

I've also found myself crying real, actual tears when Quinn told me a couple of weeks ago that Loki (our cat who frequently scratches at our dining room chairs and occasionally throws up all over our fabric couch but never on the hardwood floors) is his favorite "person" in our family. Oh, how that boy loves that cat. I might have been a little offended, which is of course a little ridiculous.

Sometimes I think I need my therapist on speed-dial. (Is there even such a thing as speed-dial anymore?)

***

I had a dream the other night that Quinn was as tall as me, and I got to see him -- even in the haziness of my dreams, as a 65-inch-tall boy who was almost a young man. He was perfect and handsome and pure goodness. 

I woke up with a tightening in my chest that hasn't quite gone away the last few days. Am I over-doing it at Pilates? Is my anxiety giving me near-constant panic attacks? Are there tumors growing in my chest wall again? 

Will I get to see my boy be as tall as me in real life?

photo by the uber-talented Jodi Lynn

***

I have had so many friends find out they have progression this month -- in their brains, lungs, stomach, spine, skin, the list goes on and on -- and the truth is, I am scared shitless that the boogeyman who is cancer could show back up in my life again at any moment. Metastatic breast cancer is THAT unpredictable, and as amazing as some treatments are, there is still no cure. My fear has been acting out this month, and maybe it does every October. It's a spooky fucking month.

(Sometimes substitute words are just not at all adequate.)

***

I wrote all this, and then I went to a yoga benefit class tonight for City of Hope, a cancer treatment center and research facility. I dragged myself there, is more like it. I didn't want to go, didn't want to navigate my way downtown and to the venue and deal with traffic and find parking and all of the STUFF that goes with getting somewhere on a Friday night. (Hello, middle-age, nice to meet you!)

My worlds collided tonight and it was pretty awesome. Yoga in the outfield at Chase Field for @cityofhope with @spiritualgangster and a beautiful community of yogis. @nikmeier #YogaforHope #spiritualgangster #namaste #phoenix

A photo posted by Nicki Adair (@nickiadair) on Oct 30, 2015 at 9:45pm PDT

I practiced yoga with a bunch of other people on the field where the Diamondbacks play, did my forward folds and crow poses and shoulder stands under the stadium lights, which was totally surreal. I slowed down a bit. I was reminded to breathe. And you know what? It helped. I might not need a Xanax tonight.

This is How We Cope

A friend of mine posted something the other day, along the lines of: "Brain MRI day. There better be brains still in there."

It got me thinking about how we -- those of us who've been diagnosed with metastatic breast cancer -- deal with the barrage of treatments, scans, and uncertainty that make up our day-to-day lives. A lot of us resort to humor.

Another friend posted a photo of her SKULL CAP, which had been removed from her head as part of her treatment for metastatic breast cancer that had spread to her brain. In the photo, screws were still attached to the flesh. My friend joked (of course) about having a screw loose.

I thought her post was hilarious, but I also wanted to cry at the absurdity and unfairness of it. In what other world or scenario would I find a photo of a friend's surgically-removed scalp remotely funny? None that I can think of.

My friends and I make jokes about whether we still have brains because we are in fact SCARED OUT OF OUR MINDS.

Metastatic breast cancer is terrifying. 

So we try to find the humor -- or find other ways to cope.

Sometimes, I feel embarrassed about how emotional I get, so I try to pass it off as being the fault of astrological phenomena. My scientist husband loves when I do this. (Note the heavy sarcasm.) A few weeks ago, for example, I tweeted that I was feeling extra emotional about cancer, and suggested that maybe I could blame the full moon. 

Feeling extra emotional about/scared of #MBC reality when I hug my 4yo lately. Can I blame the full moon? #lifer #bcsm

— Jennifer Campisano (@JCampisano) September 27, 2015

A friend who also has a 4yo son responded that she blames her brain mets. She was like: I see your bullshit, and I'mma cut right through it. As far as I know, I don't have brain mets, but I still reeled at the truth of her statement. Some days, there is no way around it. This shit is real.

Because as much as we might try to make light of our various situations, metastatic cancer is actually a heavy load. It is a LOT to process. As I said to another friend I was emailing with this week: you can't expect to remain sane all of the time. 

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.

Around the Web: Like Clockwork

I've been chewing my nails something fierce lately, and I haven't been able to put my finger on why (no pun intended). Then it hit me when the scheduler from my oncologist's office called this morning: I am due for my three-month scans.

Except this time I'm not having three-month scans. I got bumped to every four months, which apparently in my world is just going to mean an extra month of anxiety. My body is that well-adapted to this cycle. My brain knows just when to start acting on-edge, when nightly Xanax pills might be in order once again. After all, I've been doing this for almost four years now.

{photo credit}

It's like clockwork over here.

Except it isn't.

So now I'm all thrown off schedule, my right thumbnail is bitten to the quick, and I do have scans on the books five weeks from now. So I better figure out how to get this anxiety under control because I can't take five weeks on high alert. I will literally run out of nails.

I also made the mistake of mentioning this article from last week's round-up to my doctor by way of his assistant, and so my doctor promptly ordered a bone density scan for me. I've never had one, so this will provide a baseline. It is also, predictably, adding to my anxiety. I don't know if it's cancer, or parenthood, or just being in my mid-thirties, but my mind worries about every possible thing that could go wrong, and not just when it comes to scans (from our toaster catching fire, to getting car-jacked at a stoplight because of course, to sinkholes even though we live in Arizona not Florida. The list goes on.)

Anyhow, here's what I saw around the web this week (but I'm not asking my doctor about any of them, lest he order any more tests for me).

At Long Last, Answering Some Questions about 'Exceptional Responders'

"Silva is what researchers call an “exceptional responder,” the rare patient who has a surprising, dramatic response to a drug. . .

Silva’s story, and those of other exceptional responders, have led to an intriguing set of questions: Could researchers use technologies such as genetic sequencing to figure out what made Silva’s tumor respond to treatment? Could they mine that data for clues that might help other patients? Could they ultimately find a way to make the exceptional more routine?"

Actually, I'd happily submit to more tests if it was to figure out why I've been so lucky, why I've responded to drugs the way I have, and maybe lead to answers that could pass some of that luck on to someone else. 

Last Week it Was the Bones, This Week the Lungs?

"Scientists at the University of Edinburgh said they have discovered a “trigger” that allows breast cancer cells to spread to the lungs. . .

Prof Jeffrey Pollard, the centre’s director, said: “Our findings open the door to the development of treatments that target the tumour microenvironment, which may stop the deadly progression of breast cancer in its tracks.”"

Will the Breast Cancer Test Kit be Next to the Pregnancy Tests at the Drugstore?

"Researchers at the Department of Obstetrics and Gynecology of the Medical Center -- University of Freiburg have developed an approach for detecting breast cancer by means of urine samples. The method involves determining the concentration of molecules that regulate cell metabolism and that are often dysregulated in cancer cells. These molecules, referred to as microRNAs, enter into the urine over the blood. By determining the composition of microRNAs in the urine, the scientists succeeded in establishing with 91 percent accuracy whether a test subject was healthy or diseased."

A Case of Two Steps Forward, One Step Back (Or Sideways...)

"Countering previously held beliefs, researchers at The University of Texas MD Anderson Cancer Center have discovered that inhibiting the immune receptor protein TLR4 may not be a wise treatment strategy in all cancers. This is because TLR4 can either promote or inhibit breast cancer cell growth depending on mutations in a gene called TP53. . .

"This looks like a promising avenue to develop drugs for the worst kinds of cancers," says Brown. "However, if we wish to target this immune pathway, we better pay attention to the TP53 status of the tumor.""

Finding Relief from Post-Mastectomy Pain

Mine is not so much pain as it is a significant tightness throughout my right pectoral muscle and armpit region (to use the anatomically correct term, I'm sure) that no amount of stretching seems to alleviate (although yoga helps tremendously). Chris, if you're reading, I think monthly spa massages would help, too.

My goal {photo credit}

"“Pain is a psychological trigger for worry about cancer recurrence,” said Julie Silver, an associate professor at Harvard Medical School who specializes in cancer rehabilitation. “Treating PMPS really helps to relieve that anxiety.”

PMPS is generally defined as nerve-related pain that persists for at least three months after breast cancer surgery, though it can take up to six months to develop. It tends to occur in the upper chest or the underside of the arm, causing pain that women often describe as burning or shooting, and it sometimes presents, as it did in my sister, as an unbearable itch."

I Might Have to Ask My Doctor About A Daily Aspirin Regimen

He can't order any tests based on a question about aspirin, can he? 

"A daily dose of aspirin may be effective at blocking breast tumour growth, Indian-origin researchers have claimed.

Dr Sushanta Banerjee, research director of the Cancer Research Unit at the Kansas City Veterans Affairs Medical Center, and his team found that aspirin may be able to ensure that conditions around cancer stem cells are not conducive for reproduction."

And How Law School May Have Led to My Cancer Diagnosis*

"“People really should elevate the importance of sleep to the same level they do diet and exercise to improve their overall health and well-being,” he said."

On that note, I'm going to bed. 

* Allegedly.

Around the Web: In Memoriam

The cancer community (and at least a few others) reverberated with the death of blogger and frequent tweeter Lisa Adams last week.

{photo source}

One woman posted on Facebook, “It is hard to explain to your family why you’re crying over the loss of someone you’ve never even had a cup of coffee with.” Another explained our collective crying, in part:

#bcsm When a cancer sister dies, it is unavoidable: terror of our own death coming by the same means arises, unexpected and strong.
— Xeni (@xeni) March 9, 2015

It's not just fear of our own mortality, of course. We also miss our friends.

I am not alone in missing Lisa's wit and quick comfort. Even in 140 characters or less, she knew how to get straight to the heart of a matter, what to say, how to be a friend, the right words to use to educate the rest of us about clinical trials, palliative care, end-of-life decisions, and how to stay positive through it all (to paraphrase: find or create a bit of beauty).

My friend Renee's birthday was this week. I miss her, too. And Brigid, and Jen, and far too many others to list here.

So, yes, we grieve for our friends. But there is a large dose of fear. We who are living with metastatic breast cancer can't help it. We wonder: when will our luck run out? How will our families cope? Will our children remember us? Have we done enough to leave our marks, given our limited time (and energy)? Will there ever be an end to this disease? Will it (could we dare to hope) be in our lifetime?

Here is a round-up of the news and research that I hope is moving us in the right direction. My hope sustains me. It brings me out of my fear. Here's to hope. And research.

A New App that May Help Advance Research

"Apple could have slapped a pink ribbon on their iPhone cases during October, or donated a percentage of their October pink iPhone sales to one of the breast cancer organizations, and called it a day. Instead, they chose to put skin in the game, working with Sage Bionetworks to develop ResearchKit -- a completely Open Source (read: FREE) platform for the medical research community to help collect patient-reported data efficiently, effectively, and inexpensively."

You can learn more or download Share the Journey here.

Manipulating Cells' Shapes to Treat Breast Cancer?

"Changing cell shape – through mechanical, chemical or genetic means – could be a new way of assisting the body’s own inflammatory response to fight cancer.

“Interest in using the body’s own inflammatory response to fight cancer has been reinvigorated recently because of the promising results of immunotherapy. Our study further supports the need to explore the role of inflammation and cancer, in order to enhance treatments and the body’s own ability to eliminate cancer cells.”

Professor Paul Workman, Chief Executive of The Institute of Cancer Research, London, said:

'Cancer cells are in a battle against the body’s natural failsafe mechanisms that seek out and destroy them. This study underlines the importance of a cancer cell’s shape in helping to tip the balance in its favour, not only dodging an immune reaction but actually thriving in response to it. It also shows that manipulating cell shape could help tip the balance back against a tumour.'”

Another Treatment Option in the Pipeline for Her-2+ Cancers

"Poziotinib is a novel oral, pan-HER inhibitor that has shown single agent clinical activity in breast cancer, gastric cancer, lung cancer, and colorectal cancer, and is currently being studied in several Phase 2 clinical trials.

Poziotinib has shown a remarkable 60% response rate in early clinical trials in patients with breast cancer who had previously failed multiple lines of treatment, including HER2-directed therapies trastuzumab and lapatinib."

Hope for Fertility Preservation in Certain Early-Stage Breast Cancers

"A major international clinical trial has found that the risk of sudden onset of menopause can be significantly reduced by adding a drug called goserelin to the chemotherapy regimen. Women who took goserelin and wanted to have children also were more likely to get pregnant and deliver a healthy baby.

'Some of the most distressing side effects of chemotherapy in young women with breast cancer are early and sudden onset of menopause and infertility,' said Kathy Albain, MD, senior author, medical oncologist and Director of Loyola University Chicago Cardinal Bernardin Cancer Center's Breast Cancer Clinical Research Program. 'These findings provide hope for young women with breast cancer who would like to prevent early menopause or still have children.'"

Lowering the Cost of Cancer Medicines

"The Food and Drug Administration approved the first copy of a biotechnology drug for the U.S. market, firing the starting gun on a new industry that could help the U.S. curb its $376 billion in yearly drug spending.

The drug is a rival version of Neupogen, an Amgen Inc. treatment prescribed to chemotherapy patients."

I never needed Neupogen. Instead, I was given Neulasta, a similar drug that is long-lasting rather than fast-acting. Both work to stimulate white blood cell production. My Neulasta shots cost something on the order of $6,000 per infusion, and I got one after every treatment on my old chemo. 

This news could save a lot of people a lot of money. 

Speaking of Money, A Little Grant to Fund Metastatic Breast Cancer

Care to match this, Congress?

The Promise of PARP Inhibitors for BRCA-Mutated Breast Cancer

"The FDA’s recent approval of the first PARP inhibitor, coupled with current research, suggests that this new class of targeted therapy has great potential to help not only patients with ovarian cancer for whom the agent is indicated but also individuals with breast cancer. Mark E. Robson, MD, clinic director of the Clinical Genetics Service at Memorial Sloan Kettering Cancer Center, presented on this topic at the Miami Breast Cancer Conference.

“It is an exciting time. We have an approval for olaparib (Lynparza) in ovarian cancer and there are active phase III studies for olaparib and other PARP inhibitors in metastatic breast cancer for patients with BRCA1/2 mutations,” said Robson."

This One's for My Husband: Chemo Brain Might be Treatable!

Hallelujah. Right, Chris?

A Reminder that I'm a Quail (But Not Today)

In the middle of a painting session with Quinn yesterday afternoon (in which we painted heart-shaped pumpkins and talked about how to mix red and yellow to make orange), my oncologist's office called. As it happens every time I see their office name on my phone's screen, my heart leapt into my throat. Was something wrong with my blood work? I couldn't help wondering.

It was something much more benign than that (pun intended). They've scheduled my next CT scan -- how can it possibly be that time again already? -- and wanted to pass along the details, to remind me of the rules even though the routine is painstakingly familiar at this point. I know I can't eat or drink for hours beforehand. I know not to wear any jewelry to the appointment. I know where to check-in and exactly which months-old magazines will be available for me to browse while I wait. I remember.

I swirled my paintbrush in a cup of water and watched it turn a murky shade of orange. The phone call took just a few minutes, and I've learned how to bounce right back into mommy mode, how to not skip a beat in my activities with Quinn, how to put on a brave face, even when my head is already starting to swirl with what-ifs.

***

Quinn made a comment the other day about what it is each of us does: "Daddy goes to work, I go to school, and mommy goes to doctor's appointments! Right, mom?" Oh, buddy. I am so, so sorry.

***

I've had a headache for nearly a week. It's probably hormonal, or it could be that one week into October and I'm already exhausted by the onslaught of awareness (although the conversation is starting to change!) It could also easily be because I have a terrible habit of grinding my teeth while I sleep. I wake up and my jaw muscles are sore from the tension I can't escape in the middle of the night.

But I also know that somewhere around 50% of metastatic patients with Her-2+ breast cancer end up with brain metastases because chemo doesn't cross the blood-brain barrier and cancer cells do.

I read this blog post by an oncologist the other day. He talked about an evening when he was sitting out with friends and watched a falcon descend upon a covey of quail, which he turns in to a metaphor for living with advanced cancer. He also writes about how "chronic" is not really an accurate descriptor, although it has been the one my doctors have used most with me.

This line in the blog post hit home: "If you have metastatic breast cancer you are walking around under the cloud of a death sentence, any temporary stay of execution provided by fulvestrant or T-DM1 notwithstanding." T-DM1 is the drug I'm on.

And so already, my scan a month away, my head swirls with the what-ifs -- how long will this temporary stay be? When will the next big scientific breakthrough happen, and will it be soon enough? Am I strong enough to face chemo-chemo again, if this drug stops working? Why does my head hurt so much? But I have learned to reel myself in, to go back to the moment, to keep painting.

This last line from the oncologist's post also stuck with me: "And then, much more quietly than the quail and more slowly than he had arrived, the falcon took off, talons empty: not today. Not today. Not today!"

An Update

After chemo yesterday, I'm feeling pretty queasy today. I don't usually take Quinn to daycare on Tuesdays, but the option was available today so I took advantage of it. And even though our trip to Portland alleviated much of my anxiety going into this week, I still cried into Quinn's pillow in the dark as I laid down to tuck him in last night. Some of it was the slight stress I was feeling over my scan results -- UPDATE: as I was writing this, my doctor called to tell me MY SCANS WERE CLEAN!

There's no easy transition here, and mostly, my tears last night had to do with a friend, Brigid, who was admitted to the hospital yesterday for the third time in the last couple of weeks. It is really tough to celebrate my good news at the same time that my friend suffers. The tumors that have been plaguing her lungs for nearly eight years with nary a symptom are now growing so fast they are causing her lungs to repeatedly fill with fluid despite procedures to drain them; Brigid can no longer breathe very well unassisted. 

{Brigid and me, December 2013}

On paper, Brigid's cancer is very similar to my own: Stage 4, Her-2 and ER/PR+. But the drug that has held me in remission for nine months now had almost no effect on Brigid's cancer. Killing cancer is not yet a perfect science. 

When I first met her, I was in awe of how long Brigid had lived with this disease -- about five years at the time. As I approach the three-year anniversary of my diagnosis, though, I realize five years isn't close to enough time; neither is eight years. Is there ever enough? Are we ever ready to throw in the towel? Does it matter what we want?

Who knows why I respond to drugs that haven't stopped Brigid's disease from progressing? Who knows how long my luck will hold? For now, I am feeling an odd mix of relief and fear for my friend. My stomach is doing flip-flops, and this time I can't entirely blame chemo.

Thirty-Nine Point Three

As you may or may not know, I'm walking in my third Avon Walk for Breast Cancer in San Francisco this July. It is a grueling and exhilarating two-day, thirty-nine-point-three-mile walk through the city, across the Golden Gate Bridge, and up the hills of Marin County (seriously, they never seem to go down).

{photo credit}

When I did my first Avon walk in Santa Barbara in 2012, I was about halfway through six months of high-dose, intense, ugly ugly ugly chemo. I signed up for that walk at the last minute, giving myself just over five weeks to train and raise the $1,800 minimum. I was shocked as the donations poured in and topped out at more than $12,000. Avon took notice and asked me to be the survivor speaker at the closing ceremony that year. I even got to meet Fergie (that's me in the stranglehold in the lower left photo).

I signed up for walk number two almost as soon as I limped across the finish line that year. Last September, I walked San Francisco with eight friends and family. I'd been on my current drug Kadcyla for four months then; I'd just received news it was working, but there were still signs of cancer. I was once again a top ten individual fundraiser, and I vowed I'd keep walking and raising money and awareness for as long as I'm able. I am so lucky I'm still able.

Every year, I have this little seed of hesitation at the back of my mind, wondering whether I should sign up again, whether I'll be around in twelve months or healthy enough to walk. And then I say, "Fuck it," and sign up again, optimistic and hopeful and willing myself to keep doing this year after year, mile after mile, lost toenail after lost toenail.

I walk because I can. Because I believe we are on the precipice of monumental medical innovations and breakthroughs, and I want to do every little thing in my power to help drive that forward. Because Avon gives back to local communities to help under-served women get access to healthcare, gives to charities that support people as they're going through chemo (and I know firsthand how life-changing that is, to have someone else bring your family a meal when you're too sick to manage it), and funds cutting edge research -- the type that is bringing me smart-bomb medicine and ever-so-slowly shifting the tide in our collective fight against cancer.

If you'd like to contribute, you can visit our team page here: Team Booby and the Beast. Every dollar helps. Thank you for your kindness, your unwavering support of me and my family over the years (years!), and for walking with me -- in person and in spirit.

Next year, I'm setting my sights on Washington, DC. Who's with me?

What These Boys Know

When Quinn was born, more than one of the labor and delivery nurses declared that he was an "old soul." You could see it in his eyes, they said. There was wisdom there. Look for yourself:

I remember so vividly the feel of his velvety baby skin, covered in soft downy fuzz that I swore was in the shape of angel wings across his back. (When your eyes return from rolling to the back of your head, I'm still here...with even more eye-roll inducing stuff.) As corny as it sounds, I believed he'd come to guide me, teach me, deliver me. Babies are capable of that, you know.

***

I have a scan again next week, although I've graduated from a PET scan to a CT scan. (It causes too much radiation exposure to continue doing PETs every 3 months). Still, a scan is a scan when it comes to anxiety about what they could show, how life could screech to a halt again, how I could come fully unzipped.

I try to keep my panic attacks to a minimum during the day, try not to snap too often about things like bath-time delays and mud on the floor. I try to maintain some semblance of normalcy, even in the week before my scan. But it's been difficult this week, and I'm pretty sure I won't be nominated for an Oscar for my abilities (or lack thereof) to mask my angst anytime soon. I wish I could hide all of this from Quinn, spare him this stress. He chewed his fingernails down to the bloody quick over the weekend, so I fear I'm not doing enough.

Another family member was diagnosed with pancreatic cancer last week. We are still waiting on results of his PET scan, which will determine next steps--most likely intense, high-dose chemo. Maybe surgery. Certainly a horrible next couple of months, especially for those closest to him. Cancer is a fucker.

Last week was also a rough week in the breast cancer community. One woman in my circle died at the age of 30--thirty!--from this godforsaken disease. Another, a friend of mine, died the next day. Her teenage son posted a selfie in which he was wearing a pink shirt and a smile on his face. He said: Got my pink on for you mom. I love you and miss you already. I'm smiling cause no matter what you were going through you always smiled. That's one thing I'll never forget, and that's one hell of an example of strength, what you always had. And shared with many others. You'll always be a fighter! So of course I bawled my eyes out, more than once. 

I'm scared about next week. I always am, and I don't know if there's any way around it. No matter that my last two scans have been clean and nothing in my treatment regimen has changed. No matter that my weight is up, that I feel strong, that I believe I'm healthy. Cancer is wily and unpredictable, and I'll never be able to let my guard completely down. I miss that, but that's for another post.

***

Last night, as I was putting Quinn to bed, lying in the dark with him just after books, he said, "I'm scared, Mom." "Scared of what?" I asked. I was expecting him to say the dark, or the shadows on the walls (which he calls ghosts). He thought a minute, then said, "Um, nevermind. I'm not scared anymore." He paused. "I don't want you to be scared, either, Mom." And then I did my best to muffle my sobs in the pillow, gritting my teeth together because that's what steroids and scans and cancer make you do--lose your shit when you realize your little boy probably knows more than he should. 

Then I rubbed Quinn's back--my little angel--until he fell asleep. 

Heavy Stretching

I knew I was supposed to have chemo this week, but I couldn't for the life of me remember what time it was scheduled for. So just after 8 a.m. on Monday I called my oncologist's office to find out, and it turns out I'd forgotten to make the appointment at all. Chemo brain strikes again.

Luckily, they were able to squeeze me in on the infusion schedule in the early afternoon, which also gave me time I wouldn't normally have in the morning to make it to a yoga class. Nothing like a little getting centered (or heavy stretching, as Chris calls it) before poison--ahem, chemo. THIS is what I do with my days, you guys.

And side note, I have a scan next Monday. As much as I'm trying not to be anxious, I'm still a little on edge this week. Pre-chemo steroids don't help. (They don't call it 'roid rage for nothin'.) But I didn't realize how on edge I was until yoga on Monday.

At the beginning of class, my teacher started talking about how yoga is a spiritual practice as much as a physical one, how we come to our mats to create space for good as we release what's no longer serving us--physically, emotionally, or spiritually. None of this is particularly new or earth-shattering, but then he began talking specifics. How feelings of fear or guilt or anger or jealousy can take root wherever there is an absence of love. "So," he said, "the way to drive those emotions out is to breathe in love." Easy for you to say, I thought. You don't have a PET scan next week.

I was irritated with the idea and found myself actually getting angry. What was I supposed to do? I thought. Send some love to my scarred, radiated chest that won't move the way I want it to? Feel love toward my never-ending appointments, scans, and follow-up visits? Love cancer? As I began to move through the postures, though, to stretch and strengthen my body, to marvel in what it could do, I realized my instructor was on to something. As I began to sweat, as my muscles burned in warrior pose, as the familiar calm began to seep in, I realized how frayed my nerves were and how much these scans still hijack me--yes, physically, emotionally, and spiritually--in the days leading up to them.

As much as the stubborn side of me didn't want to admit it, it does help to be more loving with myself. And wasn't that what I'd resolved to do this year, anyway?

I don't have quite as much flexibility in my right pectoral muscles as I do on my left side since I had four lymph nodes removed and five weeks of radiation. But slowly, muscle fiber by muscle fiber, the scar tissue is breaking up and poses I'd figured were out of reach for me are becoming available again. The pain is lessening (although there is still significant discomfort, but I have learned to tell the difference between the two) and my range of motion is improving.

It doesn't take away the fear or anxiety completely, but coming to terms with my body, appreciating it for its strength and--yes, sometimes even grace--helps me accept the scan next week, helps me find peace with where I am today, helps me forgive all that my body and I have been through the last two and a half years.

As we relaxed in shavasana at the end of class, my teacher reminded us to let go of fear, and I realized maybe it's not so easy for him, either. I don't know what struggles he's up against. We all have our burdens to bear. I don't know what anyone else is bringing to their mat. I only know that every time I come to mine I let go of a little more of what holds me back.

Yoga can't help me control what my scan will say next week. And I don't know if my chest muscles will ever open up enough for me to get into king pigeon pose.

[photo credit]

But yoga does remind me to find peace with my body--myself--either way.

Love/Hate

I never meant to take a month-long break from this space. Life--and the holidays--just sort of took over. I've been busy baking and decorating sugar cookies with Quinn, making waffles at his preschool's breakfast-with-Santa event (where the waffle makers kept shorting the fuses in the fellowship hall and the line for waffles kept getting longer and some of the waffles we sent out may have been undercooked), and I don't even know what else. Last-minute shopping? Getting our Christmas cards out the door? Complaining about how cold my feet are whenever it drops below 65 here? Hiking Camelback with Chris?

It's a good kind of busy, and it has been nice not to give as much attention to cancer over the past few weeks. Well, my own cancer anyway. Which brings me to something I've been thinking about quite a bit lately.

I have a love/hate relationship with social media.

On the one hand, it brings my attention to stories like this, which renew my faith that I will be okay. I will live to see Quinn graduate from high school. Because even when you think there are no options left, there are mad (aka brilliant) scientists and billionaires working on flies to come up with tailored options for treating cancer. This is one of the coolest things I've read this year. I don't usually read Esquire. I probably wouldn't have seen this story but for social media.

I also love the community of it, because sometimes you need to have a 2 a.m. conversation with other people who are also suffering from steroid-induced insomnia and hot flashes, even if you've never met each other in person. On Monday nights, I try to participate in a chat on Twitter that uses the hashtag #bcsm, for "breast cancer social media." It's typically around the same time I'm trying to get dinner on the table and Quinn cleaned up and ready for bed, so I don't always participate so much as hang out on the sidelines or read the transcripts after the fact. I don't know the numbers, but a lot of people--from survivors to caregivers to practitioners--join these chats, which are moderated by a couple of survivors and a breast surgeon. It is a way to connect with others who know exactly what you're going through. One week, I commented that it was like showing up at the bar in Cheers, where everyone knows your name (or at least your side effects).

The topics of these Tweetchats change weekly. In November (and of course I'm late to the game on this--typical), the focus one week was "the invisible scars" of breast cancer. Women mentioned all kinds of things, from infertility to poor body image to trouble with intimacy to the lasting effects of chemobrain. For me, the answer was all of these things, yes, but far and away fear has always been the most obvious and lasting of my scars from this disease. Fear of more mets, fear of progression, fear of leaving my family too soon. Talking about these fears helps release their grip. Talking about them with people who are also experiencing them as intensely as I am reminds me that maybe I'm not completely crazy.

On the other hand, social media can be a scary place for me. Scrolling through my Facebook feed as we boarded our flight home from visiting my dad over Thanksgiving, I learned that a friend had died right after the holiday. Breast cancer took her from her two daughters, ages 8 and 11, who will now not have their mom around for Christmas or for when they start middle school or learn to drive or any of those other wonderfully ordinary events every parent and child should get to share. I saw the news just after I had buckled Quinn in to his seat next to mine, and I didn't even try to stop my tears.

Between sobs, I told Chris I was done with Facebook, that I couldn't take it anymore.

A couple of weeks earlier, I'd learned (via Facebook messaging) that another friend's cancer had spread to her brain, where most chemo can't travel because of the blood/brain barrier. She would need what's called whole brain radiation, which is probably about as fun as it sounds. And last week, another friend got the same news, just weeks after absorbing the shock that cancer was in her liver. As the rest of us race around marking items off our Christmas lists and hurrying to get cards out on time, these women are rushing to meet with specialists to come up with new treatment plans, in order to stop breast cancer in its tracks, in order to--we hope--spend more Christmases with their loved ones.

Facebook and Twitter aren't always the most personal communication tools, but they're how many of us with cancer share our news to friends far and wide. They provide an easy delivery system, and can bring forth huge bastions of support. Most people who read this blog link to it from Facebook.

With every loss, though, every piece of shitty news, I swear off social media for awhile. Bad news stirs up so many fears for me that it can be immobilizing. Coming across an errant status update before bed can leave me up worrying half the night. I haven't mastered the art of shutting off my emotions, of removing myself from the disease enough to just listen and advocate. Not yet.

I have also struggled over the past few weeks with how to enjoy the relief I feel over my clean scan at the same time as the grief I feel about my friends who aren't doing as well. I've been so lucky. I have consistently responded to treatment. I thank my lucky stars every day for that. For now, at least, I am not leaving this family.

Like it or not, I am part of this online community, this cancer community that brings bad (and good) news, often in quick succession. Another friend recently posted that a spot on her liver is benign. Someone else that the tumors in her brain are dying; treatment is working. For stories like these (and the cute kids on Santa Claus' lap you guys keep posting), I am usually back to my social media feeds within 24 hours. Because don't shoot the messenger, right? Facebook isn't the problem. Cancer is.

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. 

Stable

I've been a little off lately, I know. I've had this anniversary and yesterday's scans on my mind, not to mention a possible new preschool for Quinn and managing disability insurance and student loans and the fact that my brother who we just visited in Alaska is leaving for Afghanistan in the spring, so it'll be awhile before I see him again.

And then Tuesday, as I was waiting in the dark, curtained-off alcove for my PET scan... Side note: have I explained how these things work? First, you have to fast for four hours, and my blood sugar always dips into the "Are you sure you're feeling okay, honey?" territory. Last time, the tech asked me if I was diabetic. I'm not. I had chemo on Monday, so I'm already prone to headaches and nausea. Not eating doesn't help. Ask any pregnant lady.

After I check in, the nurses show me to a recliner set into an alcove in the hallway. Once I'm comfortable, they access my port, the large, wart-looking thing right above my left boob. By "access," I mean they stick a needle into it to draw blood and inject me with a radioactive glucose. My fasting-starved cells eat the sugar up, and any cancer cells will eat it up faster than normal cells, thereby giving the radiologists a picture of what's going on inside me, cancer-wise.

It takes about forty-five minutes for the isotope to travel through my bloodstream, which is time I spend reclining in the dark alcove. Theoretically, it could be naptime, but I'm too anxious to nap. Every twenty minutes or so I can hear them opening the curtain for another nearby patient signaling it's time for him or her to get scanned. I want to vomit, but there's nothing in my stomach.

It seemed to be taking an especially long time for the technician to come get me. I was getting anxious. Even more anxious than usual. Finally, she came over. "Down the hall. Go ahead and empty your bladder," she told me.

I went to the bathroom, and then came back to my empty seat and waited. And waited. An electrician carted his cart by. The receptionist shuffled past to go back to her station. Machines whirled behind closed doors. I waited some more.

After what seemed like an eternity, the technician came back to me and explained, "I'm sorry, it's going to be another six minutes or so. I saw something on this woman's scan, and I need to make sure I rescan it to get good images." I felt bile rising in the back of my throat. I was next, and here the technician was telling me there was a tumor in the woman right before me. I'm pretty sure that violated all kinds of HIPAA regulations, but it also broke my heart for her and scared the hell out of me at the same time.

Six minutes must have passed. An aide wheeled the woman with the tumor past me, down the hallway. She had oxygen tubes coming out of her nostrils, helping her breathe. She was completely bald. I started crying.

During my scan, I tried to imagine clean cells. I told myself I'm healthy. I thought of my childhood, of lying on the beach in Hawaii when I was five and loving the feeling of the warmth of the sun. I thought of Quinn.

Toward the end of my twenty minutes on the machine, I could see the technician leave the room out of the corner of my eye. Immediately I started panicking. Was she was off to tell the next person in line that she'd seen something on my scan and would be a few more minutes? Tears were streaming into my ears.

And then, before I knew it, she was back, lowering the table, telling me my scan was over, sending me on my way.

I met with my oncologist yesterday to get my results, and--although my scan wasn't squeaky clean--he was pleased. The drugs are working. And for another couple of months, I no longer feel like I'm going to throw up.

Making Our Bed

Call me crazy, but every time I wash the duvet cover for our bed, I end up crying as I'm putting it back on our comforter. As I turn the cover inside-out and lay it across our bed, then tie the four corners to the corners of our comforter, I wonder who will make sure Quinn knows how to do this if something happens to me.

Finally, last week, I called Chris into our room while I was in the middle of the bed-making process. "Like this," I said, and I showed him how you turn the whole thing right-side-out once the corners are tied so that the comforter is evenly inside the duvet. "Oh, that makes sense," he said.

And as my mother-in-law was helping me put new sheets on the bed, I asked her--through my tears--if she would show Quinn how to do her perfect hospital corners someday. "Of course I'll show him," she said, "but nothing's going to happen to you."

I'm not really sure Chris cares what our bed linens look like, but it was important for me that I passed along this knowledge. It's important for me to know that Quinn will learn certain things if I'm not around to teach him, even though I plan on being around to teach him. I mean, it's certainly not the end of the world if he doesn't know how to put a down comforter inside a duvet, and what kid really makes their bed anyway?

I asked my therapist about this.

"To you, making the bed represents normalcy," she explained. "And you want normalcy for your son."

Well, of course I do. Every good parent wants that for their children. I want Quinn to hold on to his innocence, his exuberance, his childhood for as long as possible. I want him to feel safe. I want him to know--as all kids should--that I love him unconditionally and immensely, that I will always be here for him.

As a wonderful friend and fellow cancer survivor (and mom) said to me awhile ago, "I've tried really hard to find a balance of believing, with everything in my being, that I will live to see [my daughter] grow into a woman. And at the same time, find total peace with the idea that I might not be here, and that she is going to be okay. She is surrounded by love, my love, and mountains of love from the other people around her. It's so hard."

She sent me the link to this children's book that I couldn't even get through the first time I tried reading it. I was sobbing on the couch next to Chris, who assumed I was reading something cancer-related and told me, "Enough with that crap." I showed him it wasn't crap, so then he just went back to believing I'm a big cry-baby. (All of us Akre's are; it's hereditary.)

Now, we're in the process of picking out hardware for Quinn's bathroom in the new house, finalizing paint colors, and packing up our belongings to move. We are lucky to have family who will spend all day with us sorting through carpet options and ceiling fan choices, who will coordinate with our contractor and help us pack, who will make sure my son gets swimming lessons and money for college and--eventually--a lesson on how to neatly make his bed.

With all of this going on, I'm finding that balance my friend spoke of--that belief that I will be here to watch Quinn learn to swim in our new pool and ride his bike in the neighborhood cul-de-sac, that Chris and I will reconnect in front of our new fireplace, and the peace of knowing that both of my boys will be okay no matter what.

Shaken

Sorry for the radio silence, guys. Just as I was hitting a happy plateau of life with a chronic illness, I got hit with a double whammy of news that shook me pretty hard. First, a member of my extended family was told she had ovarian cancer and a tumor that looked to be the size of a grapefruit. She had surgery and expected to undergo intense chemo, but got news this week that they were able to remove all of the cancer and she will just need to have her blood monitored for the indefinite future. All of us who know and love her are breathing huge sighs of relief tonight.

Then, last week, I got a phone call that felt nearly equivalent to the one I got last August telling me my cancer had spread - like I had been punched in the gut. My dad called to tell me that a mole he'd had removed from his chest was malignant, even though he'd been told repeatedly it was "probably nothing" - seriously, that phrase should be banned from doctors' offices. It turns out that the spot was melanoma, the most deadly form of skin cancer. 

Cancer couldn't just affect me - it had to come after my dad, too? 

Yesterday, my dad went in for surgery to have a wider swath of skin around the area removed; his doctors are confident it had not spread and the surgery was sufficient to call him cancer-free. The surgical pathology report in a week and a half will confirm this; I'm trying not to spend all of that time biting my nails.

In all honesty, my dad has probably taken this news better than I have, and I've spent the better part of this week trying to figure out exactly why it hit me so hard, when he has reassured me over and over that his doctors are confident. It isn't just the fear of losing him, but the news also shook up a hornet's nest of emotions I thought I'd laid to rest about my own mortality. I looked at Chris one night last weekend, tears streaming down my cheeks, and said, "I don't want to die of cancer." 

"I don't know why you'd think that," he said. "You've beaten this twice."

But my dad's news reminded me that we don't have much control over how or why or who this disease hits, or who will beat it. Now I just have to recalibrate how to be okay with that, but it might take some time for my dust to settle. Please bear with me in the meantime.