Monday, October 31, 2011


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


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


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


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.