Thursday, April 24, 2014

Part 2 of Turning this into a Shopping Blog

Earlier this week, I wrote about the challenges I face when choosing a swimsuit, and you all responded with so many wonderful suggestions (and compliments, let's not forget the compliments). Thank you! My summer attire is looking less bleak already.

I joked that that post was my first step in turning this into a shopping blog. Turns out, I was only partially kidding.

Last night, a friend of a friend hosted an online fundraiser for the Avon Walk that I'm doing again this summer, and--apparently, this is Part 2 of turning this into a shopping blog. I mean, I can't help it. Just look at these pieces. (Seriously, Chris, take a look at all THREE of these awesome necklaces).
But if you missed the event last night, please don't fret. You can still support our team (and fetch some great jewelry in time for Mother's Day) by shopping at the link below through Sunday, April 27th.
But first, check out these beauties. I feel like they would automatically make me a better, more grounded person. Jewelry can do that, right?
So here's the link to shop and all proceeds go to the AVON WALK!!! Make sure you see Booby and the Beast in the top of the screen when you click the link. As always, thank you for your support.

(And if shopping isn't your thing and you'd rather support us directly, that's fine, too. You can click on our team page here or my personal page here to donate). We appreciate it in any form.

Tuesday, April 22, 2014

Swimsuit Season

I know, I know--some of you are still wondering whether it's finally, really okay to put the snow shovels away for the season, and here I am about to talk about swimsuits. What am I? Heartless? I can't help it, you guys. It is NINETY-SEVEN DEGREES here today, and that is not a fluke, not a one-day oopsie-daisy. We are this close to triple digits, which means we are also this close to swimming pool weather. Right now, the water is still just a tad too cold because the air still cools down into the 50s/60s at night here. Come August, the pool will feel like a hot tub and I'll be begging Chris for a plane ticket to Seattle.


A couple of years ago, I bought a few bikinis at Target. I didn't give much thought to them because I was just happy to be healthy enough to enjoy the water with Quinn, to vacation in Mexico with him and Chris. I had my expanders in then, and despite their coconuts-on-a-board appearance, I was hardly self-conscious because I was alive. People could think I got a terrible boob job--let them! I thought. 

After a couple of years of sun and chlorine and toddler tugging, my Target swimsuits need replacing, and suddenly I am feeling very stuck. I'm self-conscious about the port in my chest (whereas it didn't even cross my mind a couple years ago), so I'm looking at halter styles or a one-shouldered suit that might strategically hide the darn thing. I'm anxious about sun exposure post-radiation, so luckily rash guards are everywhere. I used to gravitate toward string bikinis because you can adjust them so there are no unnecessary lumpy parts, but I'm second-guessing myself with Quinn, who is at perfect string-pulling height.

And then I think: I'm being ridiculous and should just wear whatever stays put best with a toddler climbing on me in the water. Your kids do that too, right? Use your bikini bottoms as a step-stool? 

I picked out a couple of suits at Target last weekend to get me through the first few pool days, but the only one that fit is a total mom suit. "I'm sure you can do better than that," Chris told me. A mom at Quinn's swimming lessons recommended Victoria's Secret, but that seems too...spring-breaky, too young, too sexy for what I've got in mind. I've browsed online at J. Crew, Athleta, and Canvas by Land's End, but nothing is grabbing me, although I've gone back to these ones for a second glance. 
Clockwise from top: 1 2 3 4 5 6
And it is wonderful to occupy my brain with something so trivial as a new swimsuit. I do realize this. Don't fret: I have scans coming up in a couple of weeks, so I'll get back to discussing my anxiety and mortality soon enough. 

But seriously, I'd love your thoughts. Where else do you shop for suits that are reasonably-priced? Do more expensive suits hold up longer? If you've had a mastectomy/reconstruction or a port, does that affect your swimsuit style? Does having kids influence your choice of swimwear? Because I'm thinking I won't be such a jungle gym in a one-piece. And do you hate me for mentioning pool weather this early in the year, after the winter most of you have had? 

Tuesday, April 15, 2014

Nipples (or, How Many Page Views Can I Get Based on a Title Alone?)

Quinn and I flew out to Baltimore a couple of weeks ago; a dear friend was getting married in DC, so I thought I'd turn it into a little longer vacation. Chris was partway through a three-week trip to Ethiopia for work, and I figured a change of scenery would be good for Quinn and me. I didn't realize we'd get snow this late in the spring, or that by "65 and cloudy" the weather channel would really mean "38 and sleety." But I digress. It was still a great trip.

On a whim a few weeks before we left, I called a tattoo shop I'd heard rave reviews about to see if they had any openings while I'd be in the area. It was unlikely, as this place books out months in advance. I'd called last fall to see if something in their New Orleans shop would be available over Thanksgiving, and had been told the earliest they could do was February. So I didn't have high hopes.

These weren't just any tattoos I wanted. They would be my first "real" tattoos. My only others are the four pin dots around my torso that I got for radiation. (The technicians use the dots to ensure you're lined up on the machine exactly the same for each session.) I'd considered tattooing my bald head before my hair grew back, but I couldn't think of what to put there. (A giant middle finger? Pink ribbons aren't really my thing.)

These tattoos would be the last step in my reconstruction process, taking my boobs from something like nipple-less Barbie boobs to ones that might resemble real breasts again. The new tattoos might hide my scars a bit, I thought, might make me less self-conscious around my husband, which is a weird thing to be after nearly a decade together.

I debated whether to move forward on this process for awhile, given that I'm Stage 4. Is it worth spending the money? I wondered. What if I'm not around very long to enjoy them? It's a morbid thought process, I know, but these are the hoops my brain jumps through now whenever I think about planning more than a year in the future. The permanency, the foreverness, of tattoos kind of had me rattled. But then I thought, Why the hell not?

And if there is such a thing, the nipple gods must have been smiling down on me the day I called Little Vinnie's Tattoos (yes, really), because Vinnie said he'd be able to fit me in the afternoon of March 26th, a day after I'd be arriving in Baltimore. I booked it.

I made arrangements to borrow my friend's car and drove the thirty minutes to a strip mall in rural northwestern Maryland. I didn't know what to think as I stepped inside the tattoo parlor. Heavy metal music was playing on the speakers. A couple of guys in black leather motorcycle jackets sat waiting on a bench. There were pictures of skull tattoos covering the walls. This was unfamiliar territory for me.

Vinnie, when he emerged from the appointment before mine, introduced himself while his daughter-slash-assistant prepped the room for me. My heart was racing. I considered taking a Xanax. Vinnie was dressed in a tweed vest and wearing a fedora with a feather in it. Also, wing-tip shoes. He had kind eyes. I smiled and began to relax despite myself.

I sat in a leather recliner in his office (I guess that's what you'd call it?) while he mixed ink colors--a little drop of blue here, a fleshy-beige there--until he seemed satisfied he'd gotten it right. With a marker, he drew circles on my skin to make sure I was okay with the placement, then wiped them off with an alcohol swab and began to free-form my new areolas.

My appointment ran late, but the actual tattooing only took about an hour. Vinnie was--as promised--an artist. He talked to me about his sister's diagnosis, how angry he gets about the business of breast cancer (even though he was charging me $800 for two quarter-sized tattoos, which my husband Chris thinks is ridiculous, but you can't put a price on art, I tell him), about the non-profit he's forming in order to take his artistry to women in Mexico who cannot afford reconstruction at all.

I'm not going to post photos of my new nipples online, even though I felt like I should show the world after spending that kind of money on them (worth every penny). Part of me wants to flash them on Bourbon Street in exchange for beads, but I don't really need that kind of validation (or, God forbid, rejection--wouldn't that be embarrassing!)

Mostly, I feel a little more like myself again. Step by little step.

Saturday, April 5, 2014

Traveling

For the past week and a half, I've been traveling on the east coast (and by traveling, I mean hanging out at my friends' house northwest of Baltimore, watching "Monsters, Inc." over and over again with Quinn and their two-year-old). It has been incredibly relaxing to step back from doctor's visits and the construction project going on at our house for a few days--to sleep in, listen to the frogs outside at night, and catch up with dear friends.
{my little traveler}
And then Chris got back from Africa and joined us here, which made Quinn a little giddier and me a lot more relaxed. We hadn't seen him in twenty-five days, and it's so nice to be a family unit again. I say this as my brother is in the midst of a much-longer-than-25-day deployment, leaving behind his own family, and all I can say is: I have no idea how military wives do it.

The three of us will be back in Phoenix soon, and I'll pick up the pace here again. I have so. much. more. about this trip to tell you. Because it hasn't all been movies on the couch with toddlers (although that part's been wonderful, too). In the meantime, here's a guest post I wrote for my friend Marie, who runs a beautiful blog "Journeying Beyond Breast Cancer." Please take a look, and stay tuned...

Thursday, March 27, 2014

Guest Post


I have never done this -- posted someone else's work on my blog. But there was so much good information in Katherine's post (you can visit her blog at http://www.ihatebreastcancer.wordpress.com) that I asked her if I could share it here. (She agreed.) I saw it on a day when I'd been thinking about all I've learned since my own diagnosis, thinking how naive I was when I first heard I had breast cancer (which is perhaps a good thing, since I didn't know exactly what I was up against). Katherine's story is not the same as my story, and that's part of what I've learned. Breast cancer is not one diagnosis, not one story, not at all what I expected more than two-and-a-half years ago.

*****

WHAT HAVE WE LEARNED ABOUT METASTATIC BREAST CANCER, CHARLIE BROWN?

Did-You-Know-Logo-SmallI am coming up on my fifth year of living with metastatic breast cancer. I am fortunate–I started with a low volume of bone mets and five years later my disease has remained fairly indolent. Not everyone is so lucky–and believe me, it is only luck. It isn’t like I tried harder or did anything special–I was just “lucky” enough to have a “kind” of breast cancer (ER/PR+; HER2-) and bone-only disease that has been fairly low key. I try not to take this for granted.

As I think back to what I knew about breast cancer in 2009, I am embarrassed. I really didn’t know anything. I remember puzzling out the facts of my case–as though I was in high school muddling through my Spanish homework–constantly stopping to look up words  and rereading everything. Now I like to think I have a basic fluency in breast cancer, but I also realize there is so much I don’t know.

When I was first diagnosed with metastatic breast cancer, I wanted to set the world on fire. I think I have calmed down a little bit. I hope I have become more focused.

Prior to my own diagnosis, I thought of breast cancer as one disease. I didn’t realize that the absence or presence of cell receptors--as determined by one’s pathology report–guide treatment as does HER2 status. (“The  tissue is the issue,” as my friend Marnie says.) Tumor characteristics ultimately determine what “kind” of breast cancer one has.

  • ER/PR+; HER2- (accounts for 65% of breast cancer cases)
  • ER/PR+; HER2+ (accounts for 20%  of breast cancer cases)
  • ER/PR-; HER2-. (accounts for 15%  of breast cancer cases)
Update: A couple of readers with ER-/PR+ breast cancer noted that the above is a bit of an oversimplification.  Here is a further breakdown courtesy of BreastCancer.org :
  • ER+: About 80% of breast cancers are estrogen-receptor positive.
  • ER+/PR+: About 65% of estrogen-receptor-positive breast cancers are also progesterone-receptor-positive. This means that the cells have receptors for both hormones, which could be supporting the growth of the breast cancer.
  • ER+/PR-: About 13% of breast cancers are estrogen-receptor-positive and progesterone-receptor-negative. This means that estrogen, but not progesterone, may be supporting the growth and spread of the cancer cells.
  • ER-/PR+: About 2% of breast cancers are estrogen-receptor-negative and progesterone-receptor-positive. This means that the hormone progesterone is likely to support the growth of this cancer. Only a small number of breast cancers test negative for estrogen receptors but positive for progesterone receptors.
  • ER-/PR-: If the breast cancer cells do not have receptors for either hormone, the cancer is considered estrogen-receptor-negative and progesterone-receptor-negative (or “hormone-receptor-negative”). About 25% of breast cancers fit into this category.
  • HER2+: In about 25% of breast cancers,the HER2 gene doesn’t work correctly and makes too many copies of itself ( HER2 gene amplification). All these extra HER2 genes tell breast cells to make too many HER2 receptors (HER2 protein overexpression).
Also: If you are reading scientific papers, it’s helpful to know that researchers typically  divide breast cancer into four major molecular subtypes: Luminal A, Luminal B,  Triple negative/basal-like and HER2 type. Read a detailed explanation here.

Inflammatory breast cancer (IBC), the kind my mom had, refers to an unusual presentation–there’s no lump, the disease is generally found at Stage 3 or Stage 4. In general, IBC is first treated with chemo, followed by surgery and then radiation. Hormone receptor and HER2 status guides treatment–someone with IBC could have ER/PR+ HER2- breast cancer, for example.

I knew invasive ductal carcinoma (IDC)  (starts in ducts)  and is the most prevalent kind–it accounts for 50 to 75% of all invasive breast cancers. Invasive lobular carcinoma (ILC) (starts in milk glands, aka lobules)  is the next most common type, making up about 10 to 15% of all invasive breast cancers.  ILC generally does not have “lumps” like you’d find with IDC. Instead, ILC grows as sheets of cancerous cells–therefore it is harder to find via mammograms or self exam. With ILC, for any given stage or grade, the prognosis is similar to that of IDC. The pattern of metastases is slightly different vs. IDC–lobular carcinoma can metastasize to unusual sites, including the gastrointestinal tract, peritoneum, and adnexa (refers to uterus/ovary).  Invasive lobular carcinoma is more likely to occur in both breasts compared with other types of breast cancer. ILC tends to occur later in life than IDC — the early 60s as opposed to the mid- to late 50s.

I knew that breast cancer had stages and that Stage 4 wasn’t good. I didn’t realize that no one dies from early stage breast cancer–but that 20 to 30 percent of those with early stage breast cancer will go on to have a metastatic recurrence.

I did not know that a de novo presentation–someone who is metastatic from first diagnosis, is the exception rather than the rule. About 90% of those with metastatic breast cancer were previously treated for breast cancer; only 10% of us are metastatic from the start.

I did not realize that our US cancer registry does NOT track breast cancer recurrence–even though that is how most people join the metastatic breast cancer ranks. The NCI and SEER databases record only incidence, initial treatment and mortality data.  What happens in between — in terms of recurrence and the exact number of people living with metastatic breast cancer — is undocumented. As Musa Mayer says, ““It is as if these metastatic [people]  are invisible, that they literally don’t count. And when we don’t count people’s needs, we can’t provide or plan for them.”

I did not know breast cancer could spread to your bones, liver, lungs or brain. I knew it was bad if it spread beyond your lymph nodes.

I did not know that having the “worst” kind of breast cancer doesn’t necessarily mean you will have chemo right away. I assumed ALL cancer patients had chemo.  In my case, I will not have chemo until all of  the less toxic options have been tried first. This is both because of my cancer’s characteristics ( ER/PR+; HER2-);  and because my cancer remains under good control. Someone with triple-negative breast cancer can’t use  the anti-hormonal drugs (Tamoxfin; Femara, etc) that I do–their cancer would not respond (because it lack the necessary cell recpeptors).

I did not know having metastatic breast cancer means you are a patient for life. Or that the average patient may receive eight or 10 different treatment regimens in sequence. When one drug fails, you move on to the next one. 

Most people with MBC see their oncologist every month. If  the cancer is under good control, these appointments might be less frequent. But for most it is at least a monthly visit.

I did not know every three or four months I would have scans to see how well or  if my treatment was working. This is anxiety provoking and hard to understand if you have never experienced it.

I didn’t know my scan results could be categorized as No Evidence of Disease (NED), Stable (nothing got bigger or smaller, everything stayed the same); or Progression. I have never been NED but I have been stable, which is good, too.

I did not know that in some cases, people can live with metastatic breast cancer for a long time. I assumed everyone with metastatic breast cancer immediately got really sick and soon succumbed to the disease. While that does happen to some people, it is not universally true. Prognosis depends on many factors, including disease subtype and tempo.

I knew that not having children increases one’s risk for breast cancer, probably because of the unopposed flow of estrogen. I didn’t realize HAVING children increases a woman’s risk for breast cancer for about 10 years after giving birth. I would be willing to bet many women’s doctors either don’t know this or assume that this is a rare occurrence.

I assumed that being diagnosed with metastatic breast cancer at age 43 put me on the younger end of the MBC spectrum. I have sadly discovered this is not the case. I have met women in their 20s with metastatic breast cancer. While it is true that breast cancer is a disease of aging, I think members of the general public would be shocked to hear from some of these young people. Anecdotally, my experience is that there quite a few young women with MBC–too many, in any case.

I did not know that although breast cancer is diagnosed in far more white women, black women are far more likely to die of the disease.

I knew that men could get breast cancer but I  assumed this hardly ever happened. I have met (in person and online) at least five men with metastatic breast cancer. I am pretty sure these men and their families take scant comfort in the “rare” categorization.

I assumed that if one needed financial aid, one could merely call upon one of  the well-known cancer associations or national breast cancer groups. (Let me stress I am fortunate that I have not had to seek financial aid, but I know many who have.) I have learned that few national groups disburse funds. Typically one has to get help  from a local chapter or affiliate or community group and once those funds are gone for the year that’s it. I have learned most aid is fairly modest–getting help will require applying to many different sources.

I did not know that a  drug that PREVENTS metastasis may not SHRINK a large, refractory tumor. It has a different mechanism of action that is NOT picked up by the clinical trial system. I did not realize some of our best metastatic researchers are advocating for a new approach to clinical trials.

I did not realize that most Breast Cancer Awareness Month coverage focuses almost exclusively on those with early stage disease. People are either afraid of our reality or prefer to ignore it in favor of  “feel-good” stories. Of course, we’ve also seen the other extreme–someone assuming ALL people living with MBC are on their deathbeds, which isn’t necessarily true either.

I did not know the  incidence of stage IV breast cancer—the cancer that is lethal—has stayed about the same; screening and improved treatment has not changed this.

I did not know breast cancer kills 40,000 annually in the US and half a million worldwide. Breast cancer remains the second leading cause of cancer death for women in the US, and it is the leading cause of cancer death for women globally.

Most of all, I did not know that there was so much that I did not know!