Friday, December 23, 2011

A Christmas Gift

I had my last round of chemo this month. It hit me like a steamroller. As a friend of my best friend recently described her own experience, it's like I woke up in a gutter in New Orleans after jazz fest, but somebody forgot to tell me how much fun I had and who I kissed. That was a week ago. And then, on Tuesday, I had a follow-up PET/CT scan to see whether all this poison had done its job. We wouldn't get the results for at least two days, probably three.

I wrapped my mind around the fact that, worst-case scenario, the news couldn't be as bad as it was in August. I felt like I was around the corner from the end of a marathon, and I really didn't want to be told I'd have to run another few miles. I was exhausted.

My best friend, Alana, flew in for the week to keep my mind off cancer, and for the most part, it worked. She finished baking my Christmas cookies, helped me plan Christmas dinner and shop for ingredients, wrapped gifts to go under our tree, and went with me to the dingy part of the hospital where they conduct the PET scans.

But I still had my moments. One night, Quinn pulled himself up on Chris' pant leg. Alana told him, "You'll be as big as daddy one day!" I lost it, just started crying right there in front of the Christmas tree while watching my boy stand next to his dad. Alana squeezed my hand tight and asked me if it was going by too quickly. "No," I said, "I just want to be here when he grows up."

And after six rounds of chemo over eighteen grueling weeks, I got a call from the oncology center on Thursday. I assumed they were confirming my appointment with my doctor this morning. "Jennifer, it's Leti," the head nurse said. "I'm calling with an early Christmas gift. Your scan looks good. The doctor will go over everything with you tomorrow." I was elated, but I didn't ask any questions. Alana and I had been baking cookies in our pajamas while Q napped. We started jumping up and down in the kitchen, tears streaming down her face, a giant shit-eating grin on mine. When I called Chris - always the more level-headed one - to tell him the news, I was squealing. He pointed out that a "good" scan could have a pretty wide range. We'd wait until we met with my doctor before we shouted the news from our rooftop.

Our meeting with my oncologist this morning confirmed the happy news: my scan was squeaky clean. All of the "hotspots" that had previously lit up - in my chest wall, my spleen, my lung - were totally gone, along with all signs of cancer in my breast. I'm cancer-free, and it feels incredible.

We still have my surgery on January 20th and six weeks of radiation, plus the Herceptin every three weeks for the rest of my life. For the foreseeable future, I'll also have follow-up PET scans every three months. Our fight isn't over, but our enemy is MUCH less intimidating now. As my husband so eloquently put it, "Our Christmas came early, with a gift that wasn't wrapped in paper or with a pretty bow, just a page-and-a-half pathology report, but what a gift it was."

Sunday, December 11, 2011

Bad News, Good News

This has been a strange week for me. My company's annual holiday bowling party was Wednesday night. We have a white elephant gift exchange, a raffle you win tickets for by bowling strikes (which is why I don't ever win the raffle), gifts from our company and general competitve camaraderie. Chris and I hired a babysitter, and I even had a beer. Other than the near-constant application of hand sanitizer (hey, we were at a bowling alley), I almost forgot about the cancer for a bit.

And then I heard the story of another woman who had been through breast cancer three years ago. When I asked how she was doing these days (expecting "great! totally cancer-free! doesn't even think of it anymore!"), I was told the cancer had recently come back, in her bones. Moreover, that there wasn't anything her doctors could do now except manage the pain. What do you say to that? Did I mention she has several young children?

I spent an inordinate amount of time crying at the office on Thursday. I went to a lunchtime yoga class to try to clear my head, and wept in savasana (corpse pose). I left the office early and had to pull over on my way home to compose myself before I pulled into my driveway. Neither Bug nor the nanny needed to see me like that. I repeated the word "fuck" over and over, just in case someone was listening and as if that word would explain everything I was feeling. It might have.

That night, I got a call from one of my best friends. She's a researcher at Genentech, the company that makes Herceptin, which very well may be the drug that saves my life. I had asked her some questions about long-term use of Herceptin, since my oncologist is recommending that I continue to receive it every three weeks for the rest of my life. My friend had incredibly reassuring things to say, but the sentence that continues to resonate in my head is: "Jen, this is the closest thing we've got to a cure." One sentence turned my whole day around.

A thousand miles away, San Antonio hosted a Breast Cancer Symposium this week, which released at least two positive news items for women with disease progression like mine. The first is about a drug, pertuzumab, that (when used in combination with Herceptin) shows even more promise than Herceptin alone for keeping tumors from recurring. Although the new drug is not yet available for purchase in the U.S., an application is pending. The second story had to do with a bone drug that is boosting survival rates in younger breast cancer patients. Scientists think because the drug strengthens bones, it makes it tougher for cancer to spread to them. Bones are one of the more common sites for breast cancer metastases. Halt the disease, increase survival.

Speaking of halting the disease, I have my LAST round of chemo next Friday, December 16th. The following week, I'll have a PET/CT scan to survey my body and see how well this poison did its job. Results on the 23rd will either say there's no evidence of disease left or that I've got to start some other course of chemo in the new year. My gut tells me to expect good news just in time for Christmas. I really hope my gut knows what it's talking about.

Monday, December 5, 2011

Grateful

I've had a half-written post about Thanksgiving for a hundred years now. In that time? My dad came to visit from Texas, my brother was here from Alabama, my mother-in-law stopped over for a few days during her Thanksgiving visit, I had round five of chemo followed by a pre-mastectomy planning meeting with my surgeon, and then a good friend left her family in San Diego for a few days to help our family make it through my post-chemo week intact, which brings me squarely to the whole point of my Thanksgiving post: gratitude. Immense gratitude.

One of my favorite t-shirts is black with the word "Grateful" written across the chest. Is it a little ironic that the word is emblazoned in pink across my breasts? Probably. I bought the shirt a few years ago at a yoga studio, a sartorial reminder of what I was there to practice. These days, I try to wear it with purpose, to let it serve as a reminder that despite cancer, I have so much for which to be grateful.

And then last week a hundred years ago, just before Thanksgiving, I read this article about how Thanksgiving is the healthiest holiday for us, psychologically speaking. And it has nothing to do with the second serving of mashed potatoes. Turns out, feelings of gratitude can lead to "better health, sounder sleep, less anxiety and depression, higher long-term satisfaction with life and kinder behavior toward others, including romantic partners." That's a heap of expectation you've set for yourself, there, gratitude.

If I'm being honest, I had a tough time plating up my serving of gratitude this year. Sure, I'm infinitely thankful for my son (I mean, check out this sweet boy),
my husband, my extended family and friends, my health insurance...the usual stuff. Yet I still felt more disengaged than I'd like on Thanksgiving - which probably had something to do with trying to keep Quinn to a semi-normal eating and sleeping schedule while feasting at another person's house with 35 other people. Our boy does not like to miss a party.

And it's tough to fully engage in conversation while an 8-month-old wriggles on your lap. He practiced making raspberries with his lips while I tried to feed him sweet potatoes and catch up with my husband's aunt who's only in town a couple times a year. We made a mess. I felt anxious because the day was moving past me too quickly. I hadn't spent enough quality time with anyone, and before I knew it they were on to after-dinner drinks and engaged in soft conversations of their own. Plus, by then it was getting to be past Bug's bedtime and we needed to get home.

As I settled into the driver's seat for the ride home, I realized that - harried and disjointed as it may sometimes be, this is life. I wish I didn't need the occasional reminder to be grateful for it, even in its imperfection, even when it seems to move by too quickly or get cut off mid-sentence by a zerbert-making eight nine-month-old. Even when it hits you with cancer. If nothing else, the New York Times says that thoughts of gratitude can lead to better health, which is reason enough for me to give thanks. Better health, here I come.

Thursday, November 24, 2011

New York, New York

I spent a whirlwind 48 hours in NYC this past weekend, surrounded and spoiled rotten by wonderful people. We ate genuine, card-carrying New York pizza at a friend's house in Brooklyn on Friday, which almost made the trip worth it by itself, that's how good this pizza was. Another friend treated me to a cozy place to stay and a yoga class on Saturday morning. And fall in New York? Heavenly, obviously. Cool, crisp air, changing leaves, boots and scarves and holiday window displays. I love it all and wish I'd had more than two days to relish the season with my amazing friends.

A couple of these friends organize a pub crawl every year to raise money for charity. This year, they directed their efforts toward the Susan G. Komen Foundation with an aptly titled "Crawl for the Cure - Hooray for Boobies Edition." I flew out to New York as the unofficial mascot. Thirty or forty of us spent Saturday afternoon pub crawling around the East Village wearing ridiculously perfect hot pink t-shirts designed for the event by another couple of friends.
Waitresses and even a bar owner on our crawl were eager to share their own friends' stories of triumph over cancer. I only cried a couple of times. All told, the pub crawl raised nearly $2,500 for breast cancer research. But even more dear to my heart than the money raised was the love I felt from everyone who participated on Saturday, and even those who didn't raise a pint glass (or three) with us but who donated their money, time and energy to the effort.

Have I mentioned lately how incredible my friends are?

Tuesday, November 15, 2011

Have you met my crazy?

You wouldn't know it by looking at my car (I don't remember the last time it was clean, and then it was probably Chris who took it through the car wash) or the state of my personal files, but I may have a touch of obsessive compulsive disorder. By the way, I'm self-diagnosing here, so if it's actually some other disorder I've got, no need to point it out.

In middle school, I went through a period where I ate baked potatoes almost exclusively and drank lemonade by the gallon. Around the same time, I went through my mom's cookbooks and calculated the calorie counts on almost every recipe, whether or not we were ever going to try the dish. I think the normal kids were at the playground. And I don't think I had an eating disorder, but I did pay very close attention to what I ate. This is ironic, considering most of my clothes in the early 90s were so baggy that it wouldn't have mattered what my body looked like underneath. I finally let go of this behavior around my junior year of high school, when we moved to Seattle and I had more important things to occupy my attention, like how to properly order a double tall nonfat latte.

That wackadoodle part of my brain is probably also to blame for my running. I've always been active, but I was never coordinated enough to be what you'd call an athlete. This is why I ran; I could usually put one foot in front of the other without falling on my face. In college, I ran obsessively. I ran whether there was snow on the ground or I was hungover or I had an organic chemistry test to study for. When my parents separated my junior year, I ran three miles to a cathedral, kneeled in the back row of pews, and cried. This was the same year I was on the cross-country team - which meant daily team practices and racing a 5K every weekend. It is a blessing that I worked at a bagel shop and had free and unlimited access to carbs during that period.

These days, limited free time only means that my looniness rears its head in other ways, and it usually strikes as soon as my head hits the pillow at night. I wish I had time to run 18 miles a week. I'd use the time to do something else now, like SLEEP IN ON WEEKENDS or organize those files of mine or catch up on laundry. When the house is quiet at the end of the day, my mind buzzes - roars, really - with anxiety about the fact that I have cancer. My panicked internal dialogue sounds something like this:

What is that pain in my rib? Why is my hair growing in? How do I have stage FOUR cancer? Why didn't I catch it sooner? I don't want to die.

Chris has perfected the art of calming me down, but I broke down this week and asked my doctor for a crutch in pill form. The moments of panic were happening more often than I was comfortable with, not to mention they were interfering with my sleep. And panic is not nearly as cute as our Bug, so my patience for sleep-deprivation because of it had run thin. Xanax won't make the cancer go away; I know that. But if it means I can cope with it a little better (and sleep a little more), I just might make it through this without ending up in the loony bin.

Thursday, November 10, 2011

Comments

I have a confession to make that should surprise exactly nobody who reads this and knows me at all: I am not the most technologically adept person out there. I had to ask Chris to help me set up this blog, and it basically requires a password and an ability to type. I was proud of myself when I figured out how to imbed photos...by clicking on the icon of a photo.

Which brings me back to my ineptitude. I read and appreciate every single comment you guys make, but I haven't yet figured out how to post replies to them so that you know I'm in a conversation with you. It's my goal for this week's treatment session: figure out how to comment on my own blog (well, that and kill cancer). In theory, it should be simple, and I welcome any tips from out there in the Internets.

To address a few outstanding questions in the meantime: Chris was a nutty professor for Halloween (oh, wait). We never did have to resort to the Irish teething cure, and are thisclose to Bug sleeping through the night uninterrupted. Hallelujah. Also, I've decided on a double mastectomy; as I get closer to the end of chemo, I just want this disease never to be a part of my life again. They can take my spleen, appendix, gall bladder and ovaries, too, if it means I get to be done with the Big C. And, yes, yoga is a godsend.

Thank you all for following along this crazy journey of ours - for the virtual hugs, high-fives, fist-bumps and cheers from the sidelines. I am running the ultimate marathon, and you are my pace car, water station and cheering section all in one. Down the road, if anyone ever wonders how we got through this period (because we will get through it, will finish this race), I know it'll be because we had this incredible network of support. You guys - and some phenomenal doctors - will have saved my life, and I can't thank you enough.

Tuesday, November 8, 2011

The Opposite of Doubt

In class last week, my yoga instructor said to set an intention for ourselves.

"Breathe in your intention. Hold on to it and make it your focus throughout this class. As you exhale, let go of something that's no longer serving you."

I inhale deeply: healing, lightness, faith.

I exhale slowly: doubt, darkness, disease.

I move through the familiar postures, try to ignore the tightness in my hips (where I'm told we hold emotional stress). Releasing into seated forward fold near the end of the hour, my nose rests on my shins. As I grab my feet, I notice how much my soles are peeling -- a consequence of the chemo. I am relaxed here, folded into myself, breathing deeply and repeating my mantra over and over in my head: Get out, get out, getoutgetoutgetout.

This cancer is not me, not welcome here. It is an anomaly: I'm not obese, not a smoker, and cancer does not run in my family. I'm not obsessive about it but I try to eat healthily. I don't have much of a sweet tooth (save for dark chocolate), and I rarely eat red meat. I practiced yoga until I was 7.5 months pregnant and the poses became too awkward to be useful. I've run two marathons and raced on the cross-country team in college. I gave birth to a healthy baby boy just 8 months ago. My body is strong.

Of the major risk factors for developing breast cancer listed on The American Cancer Society's website, I meet the criteria for three: I am a woman, I started menstruation before age 12, and my first pregnancy was after the age of 30. I look for answers as to how else this could have happened. I definitely drank more than three drinks a week in my twenties. But so did everyone else I knew. I wonder if my makeup or deodorant contains parabens, which have been linked to cancer. I should be checking labels more closely. How much plastic have I been exposed to in my life, before everything was BPA-free? My head spins with the possible ways I could have made myself sick. Chris reminds me that if they knew what caused cancer they'd have a cure. He tells me this is a random mutation. I'm not sure if that makes me feel better or worse.

I have never doubted that I will beat this, but I still have moments when I'm scared out of my mind. I don't know how the two emotions coexist, but some days the fear is palpable -- fear about having to be vigilant in monitoring for recurrence for the rest of my life, fear about the statistics for advanced cancer, confident that I will watch my boy grow up. I feel that fiercely, almost violently. I am not leaving him.

The other night, I read a story about a woman who didn't beat breast cancer. She had two young children. I am sure she wanted to live; any mother would. I don't know what makes me certain my story is different than hers, but I'm holding onto it and making it my intention.

Monday, October 31, 2011

Incognito

Just in time for Halloween, I purchased a disguise of my own. There's a wig shop next to our new favorite brunch spot and we stopped in while we waited for a table Saturday morning. A group was eating outside, all wearing pink t-shirts announcing they'd just made strides for the cure. One of them had a hot pink mohawk. I tried not to stare.

Next door, I took off my scarf and felt my eyes swell with tears. I tried not to cry. I don't mean to be this emotional, and I am tempted to blame medical menopause except I've always been this way.

The saleslady helped me try several wigs on - brunette, strawberry blonde, one with bangs. I decided on a dark brown bob, close to my natural hair color. She warned me not to style it with heat or take any cookies out of the oven with it on. Right, because baking is how I'm spending my free time lately, I think.

After brunch, I carried my purchase home in a brown paper bag.

"It's creepy," was what Chris had to say about my wig-wearing styrofoam head-in-a-bag.

Sunday, I wore my new hair to a Halloween-themed brunch at Chris' aunt's house. Fitting, no? I vacillated between feeling self-conscious in it -- is it on straight? can everyone tell? (which was a silly feeling to have, considering everyone at the brunch knows my situation, and knows that's not my real hair) -- and feeling so much more normal than I do in my scarves.

Bug and I were both incognito that day:

Thursday, October 27, 2011

Excerpts

When I was newly diagnosed, a friend from high school reached out to me to tell me about her friend Katherine, who had been diagnosed with inflammatory breast cancer in 2005 at the age of 31, and had been given a 10% chance of living five years. Six cancer-free years later, she has released a book detailing her experience. I've only made it halfway through, but the prose is so beautifully written, so vividly honest, that I couldn't help but share some excerpts that hit especially close to home:

You will go online to find survival statistics for women with your type of cancer. Really, you will be looking for someone to tell you that you are going to be okay. When you discover your chance of surviving five years is less than ten percent, you will stop searching. You will stop reading. Your left eyelid will twitch for three days.

You will become constipated and bleed into the toilet.

You will have diarrhea and won't make it to the bathroom in time.

You will begin to look forward to your surgery. Remind yourself that breasts are not a vital organ, not crucial to your survival. Try to convince yourself you never really liked that breast anyway.

Go ahead and make "hotflash" a verb and use it as a landmark for activities in your day. For example, "I was hotflashing in my therapist's office when..."

Your nose will drip unexpectedly when you're talking to a friend. It will run all over the front of your shirt before you can catch it.

Your yoga instructor will tell you to tell your body it is healing. Your body will call her a liar. Your body will be right.

I could add: Your hair will stop falling out. You will be convinced the chemo has stopped working.

You hear news about brutality against Syrian protestors and think your problems are "rich people" problems. You feel guilty. You remember there is no cure for cancer. You're not sure how to feel.

You will decide it's not worth the risk to get pregnant again, because the pregnancy hormones might feed any cancer left in your body. This is assuming your ovaries still work after four months of chemo. You wonder how much a surrogate costs. You are so grateful for your son.

Last week, I emailed Katherine to thank her for being an inspiration, for showing me that you can get through this rotten disease (with humor, to boot). I figure if she can beat the odds she was facing, I can certainly beat whatever statistics are out there for Stage IV patients, as if this is just a matter of will, like going to law school or finishing a marathon. She warned me that parts of her book might be tough to read while I'm still in treatment, but told me to skip ahead, that it has a happy ending.

*All excerpts courtesy of Who in This Room by Katherine Malmo.

Friday, October 21, 2011

The Cancer Card

On my way to pick Bug up from daycare today, I stopped at Safeway to buy an anniversary card for Chris. There's no escaping Breast Cancer Awareness at Safeway, with their pink streamers and balloons and t-shirts everywhere. But today I didn't mind so much. I was in a pretty good mood. I'd had a meeting with my oncologist this morning, and he did a breast exam. "I don't feel anything," he said with a huge smile as he felt for my tumor.

But on my way out of the parking lot, I must have cut a woman off. She blared her horn at me, gesticulating madly. When she revved her engine to catch up to me, and then pulled up next to my car at a stoplight, I rolled down my window. Maybe she'd see my headscarf and let it go, I thought. But she rolled her window down and yelled, "You didn't have the right of way! You didn't even look!" I told her she must've been driving too fast, that I hadn't even seen her. And then she flipped me off and sped away.

So much for letting it go.

My eyes burned as tears welled up, ashamed at how defensive I'd gotten, how angry a fleeting encounter with a stranger could make me. I wish I hadn't turned the blame on her. I wish I'd apologized instead, made chemo brain the scapegoat for my blind spot. I wish I'd pulled the cancer card, told her that I'm a little preoccupied these days. Maybe she would have smiled instead of giving me the bird.

Maybe all this breast cancer awareness is affecting my mood more than I think. Can we just find a cure already?

Tuesday, October 18, 2011

Pinktober

On October 9th, two years to the day after my father-in-law lost his life to pancreatic cancer, my husband and I joined 40,000 others in downtown Phoenix for the Susan G. Komen Race for the Cure. We walked the 5K race, pushing our Bug in his stroller as he napped. He wore this onesie, a gift from my college girlfriends. My husband's colleagues had formed a team - Team Booby and the Beast - in my honor, and had hats made, pink baseball caps that said "We Love Jen!" (Mine said, "I'm Jen!") There is something powerful in solidarity. And these are many of the same colleagues who purchased a personal chef delivery service for us so that I don't have to think about cooking most nights. For me, knowing our family is not alone in this fight makes me sure I can do this.

And yet, I walked the race with mixed emotions. The first half of October was rough for me, emotionally, and I couldn't quite put my finger on why. I'm still not sure I've nailed the reason, but I think I'm getting closer: breast cancer awareness is everywhere. At a time when I am all too aware of this disease and can't escape it (although I'm trying!) pink is literally permeating every storefront, sports event and public service announcement out there. At the race, an announcer cheered loudly for every sign as the people holding them crossed the finish line. I remarked to Chris that he had just a little too much enthusiasm for cancer. Chris pointed out that we were also raising a lot of money for cancer prevention, awareness and research, and maybe that's why the guy was enthusiastic. Sometimes my husband knows what he's talking about.

One particularly rough day for me was National Metastatic Cancer Awareness Day. I could go look it up, but I honestly don't remember what the date was. I do remember a friend posted about it on Facebook, with a link to an organization that funds research for Stage IV breast cancer. I clicked on the link, and was bombarded with scores of frightening statistics. I immediately felt sick to my stomach, and worried that I've been taking this all too lightly, that my confidence is misplaced. Turns out, ignorance is bliss. Again, Chris talked me back from the ledge, and reminded me that these organizations often use harsh statistics to tug at people's emotions and therefore encourage donations. Not every statistic is going to apply to me.

Earlier this week, I read a NY Times article on the "Pinking of America," focused mainly on the efforts of the Susan G. Komen Foundation. There is a significant camp who think that Komen does more harm than good by placing its emphasis on awareness rather than research. I do not subscribe to that position; both are important and Komen is excellent at what it does. Nancy Brinker, who heads the organization and lost her sister to breast cancer, admits that America runs on consumerism, and that we had to find an approach that didn't scare people away from the disease. Is it terrible if I prefer that less scary approach? Even if it means pink everywhere?

Friday, October 14, 2011

Halfway!

I finished round 3 of chemo today, which means - barring any surprises - I'm halfway done. This is both exciting and yet, the prospect of not receiving chemo every three weeks freaks me out just a bit. What's going to kill any speck of cancer that might still be floating around, then? Oh, right - the Herceptin I'll still be on for another year or two, plus the hormone-supressing drugs that will make it impossible for me to ever blame a mood swing on hormones again.

Herceptin is a wonder drug, in case I haven't mentioned it before. I receive it every week until chemo is done, and then every three weeks from then on out. It's technically not chemo, but rather an antibody. From what I understand (scientists, help me out here), it specifically targets those HER-2 receptors on my tumor that act like an "on" switch and signal cancer cells to proliferate. Herceptin turns that switch off.

But hold on to your hats, folks, there's more. I'm told Herceptin then sends a message telling my white blood cells that the cancer cells are ready to be killed. How cool is that?!? I imagine little army dudes waving white flags to signal the assassin white blood cells as they float by. "This cell has surrendered, so you can just do your thing and eliminate it. Yes, sir, whenever you're ready." Yes, I did grow up an army brat - why do you ask?

In addition to Herceptin, I'll also take hormone blocking drugs for the foreseeable future. Since my tumor is slightly hormone-receptor positiive, to some extent it relies on estrogen and progesterone for fuel. One way to ensure a tumor-free future is to cut off that fuel supply, just in case there are any rogue cancer cells hanging around at the end of this.

Recently, I've gotten a lot of questions about the hormone suppressors and how they relate to menopause. Again, I'm no doctor, but my general understanding is that they don't technically cause menopause. Rather, they'll send my body into a chemically-induced menopause that may or may not be permanent. Unfortunately, chemically-induced doesn't mean side effect-free, and I'll still have the hot flashes and mood swings as I adjust to the drugs. (But I would like to bypass the weight gain and loss of bladder control, or whatever other symptoms are associated with menopause, if I can make that request to whoever's listening.)

Assuming that someday in the next 3-5 years I'll get clearance from my doctor to take a break from the hormone suppressors for a bit, my body might revert back to its pre-chemically-induced menopause, pre-chemo abilities and give us a shot at another child. I figure we'll cross that bridge when we get to it. If the worst that comes of this whole experience is that it's just the three of us forever, that is more than okay with me.

Speaking of my body's abilities and these wonder drugs, though, my tumor is shrinking so much you guys. And I've still got three rounds to go in this fight.

Saturday, October 8, 2011

The Cost of Cancer

Generally speaking, I have no idea how much my cancer treatments are costing; I am tremendously grateful for decent health insurance so that I don't have to think about much more than my $30 co-pay at each visit. Chris and I did some quick calculations, and we figure we're going to be out-of-pocket about $1,000 when all of this is said and done. $1,375 if you count the naturopath I saw who was not covered by insurance. This sum includes my doctors visits; my surgical biopsies; my MRI, CT, PET and PEM scans; my ultrasounds and mammograms; the surgery to place my port through which I receive all of my medicine; my weekly Herceptin treatments; and my triple-cocktail chemo every third week.

It also includes a follow-up drug called Neulasta to boost my white blood cell counts that I receive after every round of chemo. Prior to my first dose of Neulasta, the nurse called my insurance company to make sure it would be covered because it is a six-thousand dollar shot. Since I'll get six of these injections over the course of the next three months, I am happy to say insurance pays for them.

But all of this has me thinking: what if I didn't have insurance? You can bet your ass Chris and I would do all we could to borrow and beg for enough money to pay for top-notch medical care, but I know that it would very quickly become a heavy burden to bear. I cannot imagine going through this while worrying about how to pay for it. Cancer gives you plenty to worry about as it is.

For about a year before I found the job I have now, I practiced bankruptcy law. It was a rough year. I came home crying several nights a week because of the sad, sad stories people were sharing with me day-in and day-out. Sure, many of them had simply overextended themselves in boom times, but a good number of my clients were in dire straits through no fault of their own - just unlucky circumstances beyond their control.

One of the most common reasons people turned to our firm for help was that they couldn't afford their medical costs. Bankruptcy provided a way out from under their bills and some breathing room. The ugly truth, though, is that clearing your record of money owed to a physician makes it highly unlikely that that doctor will treat you again anytime soon. Doctors need to make a living, too.

Recently, I read another breast cancer survivor's story. She is self-employed and had high premiums to pay throughout her treatment. Now, eleven cancer-free years later, she is still not eligible for better insurance because of her pre-existing condition. With cancer, apparently, insurance companies insist on fifteen cancer-free years before they'll consider whether you're healthy enough to qualify for a new plan.

I don't begin to believe that I know what the solution to our country's healthcare system is, but this diagnosis has certainly made me think things need to change. Not to get too political, but it doesn't seem right that if you're unemployed, you don't get health insurance. I'm pretty sure cancer doesn't discriminate.

Saturday, October 1, 2011

Bring it On

I can't sleep, and it's pissing me off. I've had a cold for ten days now, and I've resorted to "sleeping" on the couch because of my incessant hacking.

For the most part, I'm a pretty optimisitc person. An old friend who I hadn't talked to in awhile sent me a message this week on Facebook asking me about my diagnosis. I told him that I'd been diagnosed with breast cancer but expected to be cancer-free by early next year. He wrote back saying he was so glad they'd caught it early and happy to hear the prognosis, which left me wondering if I'm being too positive or not taking this disease seriously enough. Chris pointed out he wouldn't want me to approach it any other way.

So it wasn't my proudest moment when I started crying the other morning, complaining through snot-filled sobs that I didn't want to be sick anymore. Ironically, I meant this darn cold, not the cancer. (Although I'd be happy if both were gone!) Chemo got you down? Nope, but I'll be damned if I can't deal with a common COLD.

To be fair, my cold has turned into laryngitis, so it's a special kind of nasty bug. In addition to not being able to sleep, now I can't speak either. And watch out when a Campisano loses the ability to converse.

Maybe this cold is the universe's way of telling me that I need to bring a little piss and vinegar to this fight right now. Well guess what? It's already been broughten.

Wednesday, September 28, 2011

Buzzed

I made the progression to full buzz cut yesterday. It was time. I had washed my hair and couldn't get a comb through it without clumps coming out, so I wrapped a handkerchief around my head and called the salon for their first opening. It was time, but I still can't get used to my reflection in the mirror. Observation number one: my head is much smaller than I expected it to be.
It's still 105 degrees in Phoenix, so no need to worry about covering up for warmth's sake anytime soon. If anything, I should be nervous about getting a sunburn. I literally don't think this skin has ever seen the light of day.

Observation number two: there are some really pretty scarves out there. UVA/UVB protection and fashion accessory all in one. This means that getting ready for the day just got about thirty minutes faster - always a plus for a working mom!

And speaking of moms, my mom suggested I add antennae and go as a bug for Halloween. I just might. Buzzzzz, indeed.

Friday, September 23, 2011

Grace

My goddaughter Grace turned seven this week. Her mom, Alana, has been one of my closest and dearest friends since we were camp counselors together when we were sixteen. When I called to wish Grace a happy birthday, Alana and I got to chatting.

"I have to tell you what I overheard in the car the other day," she said. She had been driving Grace and four of her girlfriends home for a slumber party that night for Grace's birthday. Grace and her friends attend Catholic school, and they were discussing their prayers in the backseat.

"Girls," said Grace. "Listen. My Aunt Jen has breast cancer, in her boobies, and I pray for her every day."

"My grandpa died of cancer," said another girl.

"No. This is different. My Aunt Jen is strong, and she is brave, and she is going to beat this."

"What's cancer?" asked another girl.

Alana said her ears perked up then. How would Grace explain this one?

"Cancer is this awful, devilish MOLD that grows inside your body and eats the good parts." Pretty decent explanation for a seven year old. She gets it.

"Ewwwww!" the other girls squealed. "She has moldy boobies?!"

Well, yes, but technically only the right one, and chemo is working on eradicating that mold problem.

Monday, September 19, 2011

Monday

This was my husband's status update on Facebook today: ‎5am wake-up call by a 6 month old with a serious case of the Mondays, a championship caliber blow-out on the way to daycare, and the wifey at the doctors testing for a leaky chemo port - all by 8:30am. This is not what I call a good start to the week.

Luckily, my chemo port is working just fine. My oncologist sent me to have it tested because I felt some burning around the site as the nurses were flushing it with saline after my Herceptin treatment last Friday - like you would expect if you poured salt in a wound. Problem is, I'm not supposed to feel anything. To test the port, they inject a dye agent into it, then take x-rays to see where the dye goes. On mine, the fluid went straight into my heart, just like it's supposed to; there were no leaks. The doctors blamed the pain I felt on residual tenderness from when the port was placed 2.5 weeks ago.

And our little guy went to bed at 5 this evening. He fell asleep in my arms in our rocking chair, and I snoozed for a little bit with him softly snoring on my chest. This came after he had another, more minor-caliber, blow-out at daycare (he's working on setting the record for number of outfit changes in a day). And he still hasn't kicked the sniffles that hit him two weeks ago. I blame teething.

To top our Monday off, I spiked a low-grade fever around 6 o'clock, but two Tylenol and two liters of water later, and it appears to have subsided. Just in case, Chris has me checking my temp every hour (which is about how often I have to pee now, anyway).

Good news is, it's almost Tuesday.

Saturday, September 17, 2011

Hair

My hair started falling out in earnest yesterday. Quinn and I were playing on the floor after daycare, when I picked him up for a hug. He leaned in - mouth wide open, drool spilling out - and grabbed on tightly to my hair to pull my face in for a kiss. I love his snuggles. And I knew as it was happening what I would find in his little fist.

Earlier in the day, my scalp had started hurting, like I wore it too tightly in a ponytail and the hair was having trouble lying flat again. A nurse at the infusion center explained that it's the hair follicles dying. Fine, as long as the cancer is dying, too. I am fascinated by how easily my hair comes out when I pull at it now, but I'm trying to be gentle and not tug on it too much, so I can keep what I have just a little bit longer. And my legs? They are almost as smooth as a baby's butt (almost). Bonus: no need to shave anytime soon.

On a side note, my 33rd birthday was this week. On Tuesday morning, I awoke to forty-six new Facebook messages, and the posts continued pouring in throughout the day. My best friends all posted photos of themselves (and their kids) wearing pink bracelets in support of my fight. My dad flew into town from Texas for the occasion. I got flowers delivered and cards in the mail. I am so far behind on emails because my inbox was flooded with notes from well-wishers and happy birthday-ers. My brother, sister-in-law and mom gave me a collection of hats and scarves for me to wear once my hair is gone. And Chris and I went to bed at about 9:15 that night, laughing at ourselves because there were so many birthdays past when we didn't even start getting ready to go out until 9 o'clock. But you know what? We got a full 8.5 hours of sleep that night, with only a quick middle-of-the-night feeding of our drool-Bug. It was a really good birthday, as far as birthdays go.

And then yesterday, Chris told me, "Oh, we have something at the house tonight at 6, for your birthday."

"Do I have to clean up? Are people coming over?"

"Not physically," he said.

"Are you having a seance?" my dad joked when I told him Chris had something up his sleeve.

I was curious, but I had no idea how blown away I was about to be.

Just after 6, Chris sat me down in front of our computer, and then started a slideshow put together by my eight best girlfriends from college (yes, eight; we are a lucky and tight-knit group). The slideshow opened with a video of two of my friends in a beauty shop, telling me what they were about to do. And then it cut to the photos - from Amman, Jordan; Boston; NYC; San Francisco; Baltimore; and Washington, DC. These eight women collectively cut off what I'm guessing was about 75 inches of their hair to show their solidarity with me as I go through treatment. I was choked up and crying as I watched. When the slideshow was done, the screen faded to black, and then there they were, live and on-screen via Skype, showing off their new, short hair-dos and wishing me a happy birthday from around the country.

Have I mentioned how lucky I am? My friends are some incredible and beautiful women - with or without their hair.

Monday, September 12, 2011

Like the first trimester...

I have been asked a number of times over the last week what chemo feels like. Granted, I've only been through one round of this, so I'm no expert. I also know full well that my experience might change pretty drastically as the drugs accumulate in my system over the next few months. But I wanted to go ahead and address the question now to say this: it wasn't as bad as I expected.

My answer to other moms is that the chemo side effects felt like the first trimester of pregnancy. And I had a pretty easy pregnancy. For the rest of you, it's kind of like a low-grade hangover. Yes, I said it: being pregnant is like being hungover. (And you don't even get to drink!) Slight nausea? Check. Fatigue like you pulled an all-nighter (but you're not 22 anymore)? Check. Metallic taste in your mouth? Yup, that too. Then there's the forgetfulness, which I used to blame on "pregnancy brain" and then "mommy brain." Now it's "chemo brain." I'm starting to think maybe it's just me... Nah, couldn't be.

I have chemo on Fridays, once every three weeks. On the Saturdays following chemo, I go in for a shot of something called Neulasta that boosts my blood counts. It causes bone marrow to go into overdrive, and so spurs production of white blood cells so that my immune system isn't quite so pitiful. One of the side effects from that drug is bone pain. My worst day last week was Thursday, when the bone pain hit. It felt like labor, which I guess is fitting, considering I'd just been feeling like I was pregnant.

The nurses recommend a combination of antihistamines and Aleve to lessen the bone pain. I thought I was in the clear on that particular side effect since it didn't hit me until five days after the shot. And then it was radiating deep tooth-jarring pain in my pelvis and rib cage for a full day, despite the Claritin, despite the Aleve. Good news according to the chat rooms out there, though: apparently this pain tends not to recur with subsequent Neulasta shots. I really, really hope that is the case for me.

There were some stomach "issues" beyond the nausea, but nothing prescription-strength Imodium and Pepto couldn't alleviate, and my appeitite remains as strong as ever, which I'm taking as a good sign. I will say that the stress of the first couple of weeks post-diagnosis was enough to knock off the last several pounds, so I can fit in my pre-pregnancy jeans once again. It's about the last thing I care about, though, and not quite the way I envisioned losing the last bit of baby weight. But if all I have to endure five more times is a hangover that lasts a week (oh, and the hair falling out), I've totally got this chemo thing in the bag.

Friday, September 9, 2011

Chemo Cut

In anticipation of it all falling out, I took a preemptive strike and chopped my hair today. Cutting it somehow felt empowering, like I'm in control of how cancer makes me look. Selfishly, I didn't want to have to clean the shower drain of big clumps of really long strands of hair. It's enough as it is after a normal shampoo, let alone what chemo is about to do to my do. I joked with Chris, though, that I'll probably be the one chemo patient who doesn't lose her hair. How ironic would that be?

I'm going to donate the hair to a group called Wigs for Kids (www.wigsforkids.org). I hope they can put it to good use.

Tuesday, September 6, 2011

Walking Murphy's Law

I had a nickname in college, handed down lovingly despite its ominous undertones: Wimmel, or WML, short for Walking Murphy's Law. Make no mistake: I don't believe that I have a dark cloud following me, or even that if something bad is going to happen, it will necessarily happen to me. And I don't think my dear friend who coined this nickname believes that, either. It's just that, if there's a particularly challenging way for something to get done, that route tends to be the one I stumble across.

As an undergraduate, for example, I might have been the only History major also attempting (miserably) to be pre-med. There is a reason normal people don't try to do 6-hour organic chem labs and write 30-page papers in the same weekend. Since I'm a lawyer now, I'll let you conclude which one matched my skill-set better. Actually, let me illustrate a bit more: we were supposed to be distilling oil out of cloves (my T.A. might have been a bit of a hippy, and I can't for the life of me remember what chemical reaction I was supposed to be learning, let alone how it was going to make me a stellar pediatrician). I forgot one little alligator clamp, and my whole distillery came crashing down as soon as things started to boil. A few hundred dollars worth of lab equipment later, and my T.A. told me to just PLEASE go home and use someone else's results. Chemistry, you made me cry so often, yet I kept returning for your wily ways.

Glutton for punishment that I am, when I was in law school I decided to continue to work full-time and go to school at night, to "try to save money." I can hear Chris laughing now at how well that worked out, considering my loans are our second mortgage. After the first year of working 8-5, then hoofing it up to the law school for class from 6-10 four nights a week, spending all (well, most) of my time on the weekends studying, I decided I couldn't do that for four years. Instead, I decided I'd only work part-time, but I figured that would give me time to join law review. Have I mentioned I like a challenge?

The summer I graduated from law school was the same summer I moved across the country, studied for the bar exam, tried to find a job (in 2008, when the economy was tanking, and tanking especially hard in Arizona), and planned our wedding. And you know what? I passed the bar, got a job (although that one didn't last), and the wedding was exactly as I'd imagined, right down to those prickly pear margaritas. Despite my two left feet, we even executed our first dance pretty close to perfectly, thanks to my husband counting out the steps to me. Oh? You thought those were sweet nothings he was whispering? Have you met my husband?

All of this to say that it should come as no surprise to any of you that our little Bug came down with a bug of his own this weekend, my first weekend post-chemo, when my immune system is at its lowest and I'm supposed to avoid infection...well, like the plague. I'm doing what I can to help - making the middle-of-the-night bottles, staying awake while Chris feeds and rocks our crying babe back to sleep, but I feel useless.

The nurses at the infusion center have reassured me that, so long as he isn't running a fever and I continue to feel okay, I don't have anything to worry about. (Just in case, Chris bought me a couple of SARS masks to wear around the house. Bug thinks they're for playing peak-a-boo.)

I know we'll get through this - chemo, cancer AND Bug's cold, but then I might need a break from challenges for a minute. And I'm going to need some cuddles from a certain 6-month-old in the meantime.

Saturday, September 3, 2011

Humbled

I have cancer, but I might also be the most fortunate girl I know. (Hear me out.) I am floored and humbled by the amount of love that has come our way in the last week and a half. I already knew I had a pretty superb group of friends and family, but you guys have gone all out. Flowers and chocolates and visits planned and meals organized and babysitting offers abound. I am so grateful for each of you.

And I have been bowled over by the response from nearly complete strangers who have heard my story because of my resourceful and caring network of friends and family. A woman - a friend of my sister-in-law - whom we'd never met before brought us dinner just because she'd been through breast cancer herself, with kids, and understands that I clearly don't have time to brush my hair right now let alone plan meals. A friend of a friend of one of my best friends happens to be a former breast cancer researcher (and current mom of 3) and married to a radiologist in the area. They sent me an email offering resources and second opinions and shoulders to cry on if I need. And I have become email buddies with a college friend's cousin's wife, who was diagnosed with breast cancer when she was just 12 weeks pregnant, decided to keep the baby and receive chemo during pregnancy, and gave birth to a beautiful baby girl just one week after our Bug was born. She just finished radiation treatments and is celebrating in Paris. And she introduced me to a group called the Young Survivors Coalition, which has been a godsend when my mind is racing and I'm having a panic attack that I might not be able to do this. The women of YSC reassure me that I absolutely can; they have the practical tips and battle scars to prove it.

What astounds me the most is how MANY women have been through this terrible, terrifying disease. The official statistic is that 1 in 8 women will be diagnosed with breast cancer at some point in their lives, and it typically strikes around age 60. Of the dozen or so women who have shared their stories with me since I started this crazy journey, though, exactly 3 were over the age of 50 when they were diagnosed.

Breast cancer tends to be very aggressive in younger women, as is the case with mine. What was just an annoying bump I thought might be a blocked milk duct grew to be a 4.7 cm tumor and spread to at least a couple of lymph nodes in just a few short months. I had a little soreness in my breasts, but what nursing mother doesn't? It is sheer, forehead-smacking craziness to me that I can feel as WELL as I do and be diagnosed with Stage IV breast cancer. Another friend's cousin who was diagnosed in April said she felt the same shock at her doctor's office. "What do you mean, CANCER? I just ran 10 miles last weekend," she told me she said at the time.

This is not a club I would have ever chosen to join, if we had a choice about such things. I would much rather spend the next year keeping my breasts and my newly-highlighted hair and enjoying every minute of watching my little guy learn to crawl, walk, eat yogurt on his own. I would rather not have to skip the anniversary trip Chris and I had planned to Mexico in October, so that I can sit in a chair for 4 hours receiving chemo. I would rather be sure that we'll be able to have another child if we want down the road. But now that I've been reluctantly inducted into this group of women, I am so humbled by their strength, humor, vulnerability, courage and WARMTH that I can't imagine a better cancer to get, so to speak. To my friends and family who have encouraged me and introduced me to these incredibly strong survivors, THANK YOU. I hope sometime soon I can be that source of reassurance and strength for some other young woman going through this hell. And then I hope we find a cure so we can all stop going through it.

Friday, September 2, 2011

Two Weeks

Two weeks ago today I was preliminarily diagnosed with breast cancer. At an earlier consult with my OB/GYN about an annoying but only slightly painful lump in my breast that just wouldn't go away no matter how often I nursed, he reassured me it was probably nothing but asked if I wanted to see someone else about it. "Yeah, I think I do," were the smartest words I've ever spoken. Thinking it was just a cyst I could have removed after I'd finished breast-feeding, he sent me to "the best breast surgeon I know."

I sat in Dr. Liu's office on the afternoon of the 19th, avoiding all the information on the walls about breast cancer because that just didn't apply to me...and it was some scary stuff. I picked up a Redbook instead. After a quick exam, she asked if I had time to go straight over to an imaging lab for an ultrasound. I called Chris at home to make sure he had enough milk to keep Bug from reaching total meltdown status for another hour or so. Yep, he assured me. We didn't suspect a thing.

At the radiology center, they quickly took me in for a mammogram. I will spare you most of the details, but boobs are not meant to be pancakes. Nor should they ever place stickers on you to mark where they want to image. Those stickers have to be removed, and...OUCH!

Next they took me in for an ultrasound, and I kid you not: it wasn't until the radiologist came in and took over from the radiology tech that I could tell there was something wrong. She noted the "calcifications" and "silvery sheen" and told me she was "pretty concerned" by what she saw.

"How concerned?" I asked.

"I'm very concerned," she said. "This looks like cancer."

Heart racing, mouth dry, adrenaline COURSING through my veins, I somehow drove the 2 miles home. It was the longest drive of my life.

After watching Chris' dad - my father-in-law - suffer through and ultimately fall victim to pancreatic cancer less than two years ago, I was consumed with guilt about the news I had to share. "WHAT?!?" was Chris' reaction. "Tell me exactly what they said." We were both crying as I told him about my appointments. "I can't believe we're fucking having this conversation."

We slowly shared the news with immediate family over the weekend and waited anxiously for my biopsies on Monday. 48 hours never felt soooo d r a w n out. I couldn't sleep; I imagined the worst. I was pissed off and scared out of my mind. When my surgeon called to follow up and reassure me that she would get me through this, I told her there simply was no other option.

On Wednesday the 24th, I got word that the tumor was malignant, which really wasn't a surprise but still took my breath away. There was also evidence of some cancerous activity in my axillary lymph node. My doctor might as well have reached through the phone and punched me in the gut. I felt the strong urge to cut this MONSTER out of my body myself, but I am clearly not qualified for that (thank you, organic chemistry). And more diagnostic tests were necessary - an MRI, something called a MUGA scan to test my heart, a PET/CT scan and another that I (get this) volunteered for called a PEM scan, which is essentially a 45 minute mammogram. Fun times.

You guys know the rest - CT and PET scans show some small hotspots elsewhere, suggesting that things have gone outside of my breast, but that they are still very small. Clearly this is more serious than if the cancer was contained, but at present the plan of attack remains the same as, for the most part, if the main tumor responds to chemo, the little spots will too.

Chris' cousin posted about me on her Facebook page this week. She wrote, "Our wonderful cousin who is 32 with a 6 month old son has been diagnosed with breast cancer..prayers and thoughts are going out to them as they fight this." I can still hardly believe that refers to me.

Leakage

First round of chemotherapy today, and it lasted about 5 hours. Lying in bed this morning when the house was still quiet, in anticipation of our big day, Chris squeezed my hand and asked me how I felt.

"Strangely excited. Like the troops are about to land at Normandy," I said. We know how THAT turned out.

My buzz about the day lasted until the nurses administered benadryl (to prevent reactions to the chemo), and then I just felt loopy. Turns out "benadryl" is code for "night-night." Which maybe explains what happened with only about 20 minutes of treatment left.

Chris pointed at my shirt. "What's that?" I looked down; there was a big wet circle over my ta-ta. "Oh, my boob's just leaking." I'd still been nursing our son up until the diagnostic - and radioactive - tests this week, and my milk hasn't dried up yet. I've heard cabbage leaves help, but I'm not sure how I feel about walking around with a salad on my chest.

A few minutes later, my oncologist came over to ask how I was doing. "Fine, just leaking a bit," I said, not thinking that my PORT THAT ADMINISTERS MY CHEMO is embedded DIRECTLY above the culprit leaky boob. My doctor sprinted to get a nurse and nearly gave them both heart attacks as they returned to figure out how much chemo had been lost to the "leak." A light went off in my benadryl-fogged head and I realized they had misunderstood from whence the leak had sprung.

I really thought he'd run away because I'd embarrassed him by pointing out the silver-dollar sized wet spot on my shirt - because that makes total sense, that I'd made a breast cancer specialist blush by pointing at my breast. Benadryl, people, it's good stuff.

Thursday, September 1, 2011

Phone Call

My amazing surgeon called tonight - on my chemotherapy-eve - to see how I was holding up. "Let's kick cancer's ass!" she said. I love having her on my team.

Surgery will be about a month after chemo ends, so sometime in late January. The extent of it depends on whether I test positive for the BRCA gene. Positive means a double mastectomy plus eventual removal of my ovaries, since the mutation is linked to increased likelihood for ovarian cancer as well.

Either way, because my tumor is slightly hormone-sensitive, I'll have to be on estrogen-suppressing medication long-term to prevent any recurrence. Side effects include early onset menopause. So I'll be a bald, possibly infertile and boob-less, post-menopausal woman at the ripe old age of 33. But I will have kicked cancer's ass, which is totally worth the trade.