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.

Results Not Typical

My head is still spinning from my meeting with my oncologist Friday morning. They always say to take a tape recorder to these appointments, and you know what? They're right. Because it's impossible to remember how everything is said, what specific words or tone of voice are used, which questions you asked versus which ones you just thought in your head but forgot to say out loud. Before you know it, you're being shuffled down the hall for blood work and told he wants to see you again in a month.

Here's what I do remember.

My heart was racing and I felt like I was going to vomit. I grabbed a few tissues out of the box so I wouldn't be caught off guard if he came in with bad news. When he walked in and announced, "No cancer!" I realized I'd been holding my breath.

It feels so good to breathe again.

My results are not typical. I am lucky beyond measure that I am responding this well to treatment. Aggressive breast cancer like mine was does not normally wax and wane the way mine has, even with the world-class drug options I've got. My oncologist told me he was perplexed by my case and up all night trying to figure out what we should do next -- meaning, should I continue to take chemo for a cancer that (for now, at least) appears to be gone?

I have been in this position before. After my first round of chemo, just two days before Christmas 2011, I got the news that my scan was clean. Seven months later, the cancer was back and I started my second round of chemotherapy. Two clean scans and six months of grueling treatment later, I got to take a break in January of this year. By May, the cancer had reappeared.

For now, I am winning this game of whac-a-mole.

So when my oncologist asked me whether I wanted to continue on my current drug or take a break and see what happens, I asked whether there were any long-term toxicity effects for TDM-1/Kadcyla. Being told that there are not, I opted to maintain my current treatment and continue getting infusions every three weeks. There are side effects, yes, but it's a trade off I'm willing to take to keep cancer at bay and my sanity within reach.

We'll reassess in another three months, with another scan and decisions to make based on what it shows (or doesn't). I have heard rumors of women being able to stay on this drug for years. These types of claims cause hope to take root. And sometimes you just need a little glimmer of hope to hang on to.

***

Last weekend, to try to take my mind off my upcoming scan and get out for an overdue date night, Chris and I went to see Gravity in 3D. Chris didn't love it, but I couldn't stop thinking about it for days afterward. I think the last paragraph of this review sums up why:

If anyone asks me what "Gravity" is about, I'll tell them it's a tense adventure about a space mission gone wrong, but once they've seen and absorbed the movie, they'll know the truth. The root word of "Gravity" is "grave." That's an adjective meaning weighty or glum or substantial, but it's also a noun: the location where we'll all end up in time. The film is about that moment when you suffered misfortune that seemed unendurable and believed all hope was lost and that you might as well curl up and die, and then you didn't. Why did you decide to keep going? It's is a mystery as great as any in physics or astronomy, and one we've all grappled with, and transcended.

3...2...1...Xanax

I had a PET scan this morning, my eighth one since I was diagnosed in August 2011. Somehow, it hasn't gotten any easier to handle the emotions leading up to these things. Predictably, a couple of weeks ago I started getting a little more irritable and a little more sappy than usual.

I start wondering if it's worth it to plant a garden or buy a new pair of jeans because you just never know. A bigger issue than my cancer, garden-wise, is that I am like hospice for plants, my thumb is that black. But still, I start getting anxious about all of the things in my life, not just cancer. Did I remember to shut off the oven? What is that bump on Quinn's neck? Please, God, don't let Chris get deep-vein thrombosis from all his traveling. These thoughts are not helpful and some even border on ridiculous, but that's anxiety.

So when the technician came over to let me out of the machine after my scan this morning, I said, "God, I hate these things," and she replied, "Really? You could have fooled me. You looked so calm in there." Clearly, I missed my calling as an actress.

To be clear, it's not the scan that induces my anxiety, but the results, which I will find out tomorrow.

Worst case scenario: the scan shows progression, meaning the drug I'm on has stopped working. I would have to switch drugs, which would mean a return to something more toxic and all it entails: hair loss, nausea, destroyed immune system, lots of crying.

Also, the longer you're responsive to a particular drug, the better, because -- well, time. Time that researchers can come up with other treatments, time you get to spend with your family, time the cancer -- as one friend described it recently -- spends in a box, doing no damage.

Best case scenario: no evidence of disease (NED), which I last experienced ten months ago. This would mean that the drug I'm on is continuing to work, and work remarkably well. This is the holy grail of cancer statuses. Some women -- I've heard -- have been NED for years on the drug I'm on.

Second-best case scenario: stable/no progression/slight decrease in cancerous activity and/or size of tumors. This would also be acceptable.

If it's either of the two latter cases, I will stay on my current medication, which isn't side-effect free, but it's tolerable. Tolerable is so so SO nice, and it would also mean I'd get to have hair for my first holiday season since 2010.

***

I arrived at the hospital at 7:30 this morning. I have to walk across this bridge from the parking lot to the PET/CT center, which was deceptively peaceful at such an early hour.

I had to sign several forms assuring them I'm not pregnant, they tested my blood sugar, and then they injected me with radioactive glucose. Nothing felt different. I didn't ask any questions; I know the routine. I am becoming old hat at this.

As she shuffled me out the door almost two hours later, the technician told me to have a great weekend. I thought, Well, that depends, but I simply told her, "You, too." I was a little worried I'd start crying or read something newsworthy on her face if I got snarky with her.

Tomorrow I get my results, and then I can lay off the Xanax for a few more months until it's time for the next one of these things.

I'll let you guys know how it goes. Here's hoping for a great weekend.

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. 

A Selfie

I have about a half-dozen half-written posts about a number of things: the invisible scars of breast cancer, trying not to blame myself for Stage 4 cancer, having the hard conversation with my mom about my fears, my scan next week, and managing being a parent while in the throes of treatment. But while my scatterbrain works out the details of how best to finish those and share my thoughts with you all, I thought I'd update you on my hair. 

It has been awhile, after all.

I got it cut this week, while I try to let the sides and top catch up to the party in the back. And I'll probably keep it short, but I want any pixie cut to be my decision, not just the only option because that's how chemo left things. Who knew I was such a control freak? 

Also, for those of you keeping track, my hair's texture is changing, and I don't know if that's the length (relatively speaking) or being nine months post-chemo-chemo. It's still got wave and body, but less actual curl now. One of these days, maybe my bedhead will even calm down.

In the meantime, I'm hoping I get to keep playing with it just a little while longer. My scan next week will determine whether I get to continue on my current chemo or have to switch things up, which would probably mean putting my wigs back in rotation. For the record, I much prefer my own hair, crazy bedhead and all.