Monday, October 28, 2013

An Advocacy Request

I'm just going to come right out and say it: I am beating the odds already. There are all kinds of statistics out there for the survival rates of patients with Stage 4 breast cancer. Most of them are pretty grim.

After all, there is no Stage 5.

And of course I can't remember where I saw it, but I've read a few times that the median survival time once metastases are detected is twenty-six months. That's not that many months. Ask any mother.

Only about one in five people with Stage 4 breast cancer live to see their five-year cancerversary. Go ahead and re-read that sentence. I'll wait for you.

Of course, there are a million factors that determine how any one person will fare -- extent of metastases, responsiveness to treatment, overall health other than cancer, sheer dumb luck, to name a few. So it's nearly impossible to predict accurately how long someone will live once diagnosed with cancer, and my doctors have never given me a timeframe, other to say they can treat this for years.

Then again, I've never had the heart to ask, "How many years?"

Deep breath. As of about a week ago, it has been twenty-six months since I was first diagnosed. Twenty-six months that I've been living with breast cancer. Twenty-six months since that August afternoon in Phoenix when my blood ran cold and my mouth went dry and I knew the lump was too large to be good news but I researched the statistics for survival anyway because that's what we are led to believe: everyone survives breast cancer. It's PINK, for God's sake. 

I plan to continue beating the odds, to the extent I have any control over it, which, quite honestly, I don't. I'm saving that rant for another post. Please come back in a few days.

This is when I have to remind myself of something my father-in-law often said after he was diagnosed with pancreatic cancer: Statistics don't mean anything to the individual patient. Every body is unique. Every story is different.

Still, it is hard not to take note when you pass certain milestones, especially after you've seen so many friends die. On the other hand, I've also seen many friends live. I know a number of women who are living full lives with Stage 4 cancer five or ten years out from their initial mets diagnosis. "What's your secret?" I want to ask each of them, as if there were a single right answer, as if I could take any one of the suggestions that has been proffered to me from people without cancer (avoid all sugar, don't use plastic, don't eat anything processed, clear your energy fields, tie up emotional loose ends, drink a juice from a guy I know in Mexico, visit this guy I've heard about in Brazil, drink more red wine, avoid all alcohol, and on and on) and -- poof! -- I'd get to live another dozen years, and then a dozen after that if I'm really lucky. It would be nice if it were that simple, wouldn't it?

During the Avon Walk I did last month, I met a woman who was diagnosed Stage 4 nearly eighteen years ago, and continues to stun her doctors with how well she's doing today. She's an outlier; these cases aren't typical. But I think every one of us facing this disease wants to be that outlier, the one who's walking 39.3 miles over a weekend twenty years removed from when the disease first struck.

After all, Stage 4 breast cancer wasn't supposed to happen to us, either. For those of us as young as I am, we are already statistical anomalies, so why not aim for winning the lottery, too? It could happen.

As Breast Cancer Awareness month comes to a close, please think about the fact that, currently, only about five percent of research dollars are spent studying metastases, even though mets are responsible for every death from breast cancer. Maybe if we focused our efforts a little more, more than one in five of us would make it past the five-year mark. Maybe more of us could start to live with this disease long-term. Maybe more of us could watch our children grow up.

As the month comes to a close, I urge all of you to write your Representatives and Senators (as incompetent as they may seem lately) to maintain science research funding levels, specifically the Department of Defense's Breast Cancer Research Program and the National Cancer Institute. If you've never written Congress before, here's what I wrote to my own Congresswoman (feel free to use the parts of it that make sense for your letter):

Dear Rep. Sinema,

I was just 32 years old when I was diagnosed with Stage 4 breast cancer. My son was an infant, and I was nursing when a pesky lump wouldn't go away. By the time my doctors took me seriously, it had spread to my lungs, spleen, and lymphatic system. 

Today, I still receive chemotherapy every three weeks, and the cancer is stable. I have been in treatment for more than two years now. I have lost my breasts, my fertility, my hair (twice), and a number of friends to this disease. 

I am one of the lucky ones because I am still here. 

As breast cancer awareness month comes to a close, I hope that we can begin to move beyond awareness toward better education about the realities of breast cancer and, one day, a cure. 

As Congress -- I hope -- moves toward a consensus on a budget and long-term funding for our government, I urge you to press for continued funding of what we really need in this breast cancer fight: more research. Please vote to maintain consistent funding levels for the Department of Defense's Breast Cancer Research Program as well as the National Cancer Institute. 

Forty thousand people lose their lives to breast cancer every year in this country. Those of us living with this disease live our lives in three-month increments as we wait for results from scans that tell us whether our current treatment is working or that we've run out of options. We need more options, and quickly. 

My little boy is depending on it.

Jennifer Campisano

In what seems like a previous lifetime, I was a congressional lobbyist in Washington. I might as well draw on that knowledge for something, right?

Friday, October 18, 2013

The Kissing Hand

Quinn's new school has fall break this week, but one of his teachers offers care in her home instead. She calls it "Fall Break Boot Camp," and they do arts and crafts, sing songs, and most importantly from my perspective, take afternoon naps. Many working parents can't afford to take the week off, so it's nice to have the option of consistent care, with a teacher we trust and the friends our kids are used to.

Since I'm not working, I debated keeping Q home with me all week. What excuse did I really have, other than I want to do some writing and make it to yoga a couple of times and maybe grocery shop without having to fight about the car seat at every stop? I mean, what excuse other than cancer?

I forget sometimes that it's there, that I'm supposed to be resting, that my body is doing a lot of work right now. A friend of mine said her oncologist told her to expect to have about half the energy a normal person has, which makes me feel better when I have trouble keeping up with Quinn and let him watch more "Bob the Builder" than I probably should.

In clothes, I look almost normal, other than the port in my chest (which I realize I have talked about a lot, but not sure I've ever shown you guys, so here it is in all its glory).
And my hair looks like Princess Diana circa 1992, but it's MY HAIR. (See below -- I'm not kidding about the hair, right? I've got an appointment to fix that in the next couple of weeks, in case you were worried.) My eyebrows still haven't quite grown back, either, but otherwise, I look mostly okay. More importantly, I feel mostly okay. I can still go hiking and make it to yoga and take Quinn to swimming lessons, and I am so lucky for that. My quality of life on this chemo is amazingly normal, relatively speaking.
But then I fell asleep with Quinn on his twin bed at 8 o'clock last night, and when I woke up confused and groggy just before midnight, it came pounding into my head like a hangover -- oh, yeah, cancer. And I've got chemo on Monday. And scans next month. And then I might have eased myself back to sleep with some Xanax.

So in the interest of continuity and my health, I took Q in to school Wednesday and today. Wednesday was fine, but drop-off this morning was rough. He didn't want to be there in the first place, and right in front of me another little boy bit Quinn's arm, which made him even more clingy. I stayed to console him for a good fifteen minutes, maybe longer, as he cried in my lap.

Then one of the teachers suggested a book, "The Kissing Hand," which is about a mom's love always being with her kiddos, and theirs with their moms, even when they're away from each other. The story is about a raccoon on his first day of school, but it struck me that it's relevant to any separation from a parent.

As I was reading this to Quinn in the middle of the playroom floor, I felt a hard knot tighten in my throat, and I tried to pass my sniffles off as allergies: "Chester felt his mother's kiss rush from his hand, up his arm, and into his heart." Whenever Chester feels lonely at school, all he has to do is press his hand to his cheek to feel the warmth of his mother's kiss. "Do you feel that, too?" I asked Quinn, with my hand over his heart. My little boy nodded, and I struggled to keep my composure.

I was choked up for the same reason I pause just a bit at the refrain the teachers tell the kids when one is having a rough day: "All mommies come back." How I wish. I hate knowing otherwise, and I try to keep that anxiety of mine from Quinn, although he's been biting his nails lately, so I'm not sure how successful I am.

Anyway, drop-off this morning was rough for me, too. I started sobbing before I even got back to my car. I know Quinn needs to learn he's okay without me at school, and he will be okay when I die someday--all of us eventually are, but--god, do I want more time with him, and to continue to feel well enough to enjoy it.

I'm continually trying to find that balance between spending enough time with him (as if there were such a thing--ha!) and not wearing myself out. Other moms (with cancer or not, working or not), I'd love to hear how you find that balance in your lives.

On that note, I'm off to pick up my monkey to spend the afternoon with him.

Sunday, October 13, 2013

October 13th

In case you missed it, October 13th (yesterday) was National Metastatic Breast Cancer Awareness Day. I thought about doing a post on the reasons this day is so important for women like me with metastatic disease, but instead I got bogged down in watching terrible local news coverage of the Komen Race for the Cure here in Phoenix, which focused so much on victory over cancer and the racers' fun costumes that I wanted to scream.

I'm becoming an old curmudgeon well before my time.

* Full disclosure, I've done the Komen race, and it makes me just as uncomfortable in person.

As far as I noticed, there wasn't a single mention of advanced disease--or even the possibility of it--in the Komen coverage. Yes, early detection increases the odds you'll beat breast cancer, but it's still no guarantee that mets won't show up later. In fact, 20-30% of everyone diagnosed with breast cancer will at some point down the road develop metastases. It may even be after the magical 5-year mark.

Sound too crazy to be true? Read more about the facts here.

At some point, we need to stop the madness of packaging this disease in pretty pink ribbons and talk about what's really happening: approximately every 15 minutes a woman dies in this country because of breast cancer. All of those deaths? From metastatic disease--like mine. And the numbers haven't changed much in the last 30 years, despite more hype, more awareness, more pink.

I guess I am writing a post about why Metastatic Breast Cancer Awareness Day is so important. But as my friend Nancy puts it--really, just one day?

And I've griped about the pinkification of October before, but in case you need more reasons to be grumpy on a Monday, here are some interesting articles I've come across recently.

- Why I almost can't turn on the t.v. on Sundays anymore.

- Apparently this also happened yesterday?
- This blogger's reaction pretty much sums it up perfectly.

- And if you think bras are uncomfortable, try blind consumerism.

- Finally, a controversial argument by one of breast cancer's most ardent researchers and fighters that all cancer is metastatic.

If I can please implore you, if you're going to give, please donate to breast cancer charities that fund research, not awareness. We are literally dying for it.

Want a few suggestions? My friend Carolyn put together a list, below, and of course I also support the efforts of the Avon Foundation because they put real dollars toward research and have never shied away from the realities of this disease.

Here are some organizations where you may consider donating a few dollars; all receive "A" ratings for using most of their profits towards funding research and support rather than fundraising.... Breast Cancer Research Foundation, National Breast Cancer Coalition Fund, Living Beyond Breast Cancer, Young Survival Coalition, or Breast

One final, less grouchy, note: if you're going to be aware, be aware of your own body. Any changes that don't seem right to you? Get them checked out, and press your doctors to take you seriously. Breast cancer in younger women tends to be far more aggressive than the disease that strikes women who are post-menopausal.

My primary tumor was literally the size of a walnut under my skin, and my doctors were still insisting it was mastitis. So I switched doctors. And then a week later, my new doctor was calling to tell me it had already spread to my lungs, my lymph nodes, and my spleen.

Thursday, October 10, 2013

My Defiant Monkey

Today was a day that included Quinn wiping his snot on the arm of our couch as if it were a Kleenex. That alone should sum up our day for you.

But Quinn also decided he was done with diapers around 12:30 this afternoon. I was cleaning up after lunch when I heard the toilet flush, and my first thought was Uh-oh. What just went down the toilet? I turned off the kitchen faucet and ran back to the bathroom to ask Quinn what he was doing. I found him naked in the hallway, where he said, "I go pee-pee on the toilet, Mommy."

And then, like the sucker that I am, I felt guilty for having expected the worst. So I gave him all sorts of praise, told him how proud I was of him, told him if he did it again he'd get some gummy bears, and asked him if he was done with diapers. "Yep, I am," he promised.

Let me just say two-year-olds are big fat fibbers. They can't help themselves. But I am eager for him to be potty-trained, so I fell for it hook, line, and sinker. I let him wear the big-boy underwear.

About half an hour later, we were playing with trains in his playroom when I smelled an awful stench and saw the poop through the gap between his underwear and his thigh. That right there could also sum up our day for you. When I told him not to sit in it, that we needed to go clean it up, he got into a squatting position and said (I kid you not), "That better?"

It was also a day in which I yelled at Quinn way more than I'd like--for purposefully splashing the cat's water all over the floor, for running out the front door when I'd asked him to wait one minute for me, for refusing to get in his carseat, and on and on. There were multiple time-outs for him yelling "No, Mama!", multiple times when I broke down crying from exhaustion and feeling guilty and terrible at this parenting thing, multiple made-up almost swear words. I might have said, "Get in the f----un car!" at one point. Fun car, indeed.

On a whim this afternoon, I reached out via Facebook, saying I was going to start a support group for moms with cancer. I was partly joking, partly desperately hoping someone would respond and say: Hey, you're not alone; this is hard; I'm exhausted over here, too. I didn't expect the overwhelming response I got, though--from the cancer community and beyond--receptive and supportive and offering advice on how to get something like this going.

So, I'm going to try just that, to get something like this going. This, from a girl who doesn't even much care for support groups. But I'm tired. For a long time, I've fallen back on the idea that all moms are tired, but chemo fatigue has got to be different or else I am just a complete wimp. And Quinn knows how to push my buttons--actively seeks them out, even. It hasn't been a good combination for us lately, my fatigue and his button-pushing defiance.

I'm hoping this little idea I posed today can turn into something that gives me a few useful tools for better, more creative parenting. Because I love this defiant little monkey so much and have no idea how long I'll be around to parent him. I want our days to be better than this, know they can be better than today was. Here's to tomorrow, right?

Monday, October 7, 2013

What Brings You Here

Every once in awhile, I look at the analytics on this blog to see what's bringing people here.

After my latest glance at the search terms, I just feel sorry for some of those people, who were innocently looking for a porn pick-me-up and stumbled across a blog about cancer instead. Oops.

Whoever was looking for "best boobies" and ended up on my site: I'm truly sorry to disappoint; we got rid of those around mid-January, 2012. The new ones are okay, but I wouldn't call them the best. For one, they don't have much feeling left after all the nerves were cut for my double mastectomy. For two, here's a weird fact about implants: they're cool to the touch. Always. You'll have to find your own to test that--these ones are taken and it would just be weird to invite a whole bunch of my readers to feel my boobies. Also? The nipples on mine are missing (although maybe that's somebody's fetish?)

On the other hand, these new ones hold their own without a bra and they don't have cancer, so that's a huge plus. On second thought, maybe boobs that aren't trying to kill me are the best. So maybe you ended up exactly where you wanted. In that case, you're welcome.

To the person looking for a "booby of the day," you, too, were probably in for a surprise. While I might someday, I haven't yet posted any photos of my boobs online--before or after my surgeries. Cancer plus having a baby has pretty much removed any hang-ups I ever had about disrobing in front of strangers, but I still have my boundaries. So far, the Internet is one. Anyway, if you're looking for those photos, you might want to try here.

Another great post for what cancer looks like? This one. Although cancer also looks like this, so you just never know.

Oh, and now that you're here, I hope you'll stick around awhile.

Sunday, October 6, 2013

A New Look

So, you may have noticed a few little changes around here the past few days. I hope you like the new look and find it easy to navigate. Those were my goals.

Also, to look a little more grown up around here. It was time. It appears they have not found a cure for cancer yet, so I'll be writing here for awhile.

I couldn't have done it without Stelina over at Lorelai's Things, who was lovely to work with and saved me from having to teach myself html and css.

I'd love to hear what you think!

Wednesday, October 2, 2013

Why We Walk

Over the weekend I flew to San Francisco to walk in my second annual Avon Walk for Breast Cancer. Nine of us met up in the pre-dawn chilliness two days in a row to complete 39.3 miles in order to raise money for research into this deadly disease. 

It was frigid at 6 a.m., but at least I wasn't bald this year. 
{early morning festivities}
During the opening ceremony, a kid who must've been about 12 spoke about losing his mom after her several-year battle with breast cancer, and I broke down sobbing. I turned to my friend Shelby for a hug and made a joke about the crying starting already. I couldn't help myself.

It was also an especially emotional walk for me because I learned at lunch on Saturday that my fellow fighter Jen passed away Friday night, leaving her six-year-old son behind. I thought of her (and him) so often as I walked. On the eve of "Pinktober," all I could think was: this disease needs to end.
My teammates and I walked up steep San Francisco hills, along the waterfront looking out toward Alcatraz, over the Golden Gate Bridge, through Marin County north of the city, and then we got up in the morning and did it all again. My friend from Seattle joked that if she'd known we were walking that far north, she would have just started walking down from Washington to meet us. 
{the Golden Gate Bridge on Saturday}
By the end of the first day, our feet hurt, our hips were cramping, and some of us were chafed in pretty unpleasant spots. So we soaked our feet in epsom salt baths, downed a couple of anti-inflammatories with our carb-filled dinner, and got up to do it all over again on Sunday. We walked because we could, and there are so many who no longer can.
AvonWalk SF2013-83
{some of my teammates + me after Day 1 of walking}
Many walkers wore "race" bibs that said: I'm in it to end it for... or I'm walking for... and they wrote whoever they were walking for in the blank. I'd written mine out on Friday night, before hearing of Jen's passing. Mine said, "Myself, and all my Stage 4 sisters," along with several women's names, including Jen's. 

Another woman wrote, simply, "Humanity." (And then I felt like a schmuck for saying I was walking for myself.) 

And one man's bib said, "I'm walking for time, valuable time," and I thought That's exactly why we're walking.

Join us again next year?