The Tuesday Night Blues

Tonight is just one of those nights when I am frustrated by everything. Work has been stressful and and unfulfilling. There was a massive leak in our bedroom ceiling and they’ve cut a gaping hole in it and we’ve been sleeping on the mattress on the floor in the tiny second bedroom. Our apartment is messy. None of our pictures are hung up. I’ve been suffering from recurring and nasty UTI’s for the past month and a half and I don’t know why. My right breast, same area where the tumor was, has been aching on and off and it’s probably just my muscles getting used to the implants but it scares the s&%^ out of me. One of our male neighbors… can’t tell if it’s up or down… is singing Katy Perry at a volume and tone that’s inappropriate even for Katy Perry in the shower.

And then to top it all off I got a “FINAL NOTICE” bill from GWU for a charge that I don’t understand from my MRI back in FEBRUARY 2011 (which, mind you, my parents already dished out more than $1,000 for). Not only that, but I’m in the midst of writing an appeal to insurance for another $1,000 charge for the surgery I had at the end of April, which they won’t cover because, as the Explanation of Benefits explained, “a response to our request for information from the provider has not been received.” All fine and good – except why am I being penalized for the billing office’s incompetence?

I went to a “Living Well with Cancer” retreat this weekend at Smith Center here in DC and they were all about stress reduction because stress allegedly feeds cancer.

I think that’s a bit counter-intuitive because:

Cancer is stressful. Life after cancer is stressful. Dealing with insurance companies and medical billing departments is stressful. Heck, life even without cancer in the picture is stressful. 

I’m going to go attempt to do some yoga and breathe.

Breathe. And imagine you live in a serene bubble on Kapalua Bay Beach in Maui.

 

Breast Cancer Humor

Courtesy of webcomic XKDC.

Bald Barbie

Love this Facebook page advocating for a “Bald and Beautiful Barbie”. I was so bitter throughout my treatment of women with gorgeous, long hair – I can’t even imagine how young girls with disorders like alopecia must feel. The more difference can be celebrated, even in ways that seem small, the less people will feel like outsiders.

Growth

Finally got a cord to upload pictures from my camera (thanks, dad, and your freakishly large box of random wires) so here’s a little chart of my hair growth since ending chemotherapy. September 1, 2011 was my last infusion.

October 4, 2011

October 9, 2011

October 17, 2011

October 25, 2011

November 11, 2011

Novermber 19, 2011

December 9, 2011

January 5, 2012 (in Hawaii!)

January 11, 2012 (a couple days before this post)

Team Cara

Mush alert: This post is going to be about how awesome my boyfriend is. Not only has he stuck with me through this whole terrible year, offered his encouragement and support, let me cry on his shoulder, and never once complained or acted like it was all too much, he also organized his running friends from college to run the Philadelphia Marathon in my honor and raise money for Young Survival Coalition. If that doesn’t make him the best boyfriend in the world, I don’t know what does.

I’ve finally gotten around to downloading a couple pics from the race, so enjoy.

My amazing friend Liz (left), who ran the half marathon and has also been a great source of support throughout this year.

Will, my bf, rocking all the way to the finish line in his Team Cara shirt.

And finally, the back of the t-shirt, which says "Bisexual Turtles Against Breast Cancer."*

If you’ve never stood at the finish line of a marathon, I suggest you try it. Race finish lines have this awe-inspiring energy to them. There’s usually loud, inspirational music pumping, lots of people cheering for their loved ones and even runners they don’t know, and a sense in the air that something amazing is happening – people are accomplishing amazing feats of strength and endurance that most humans can’t even imagine. To everyone who ran that day, I am so proud and inspired by you! So much so that I may even run a race of my own… some day.

 

*I realize this warrants some explaining. When Will was in college, he and some running teammates found a stuffed, green-and-purple turtle in the trash. They adopted it and named it Change-up, the Bisexual Turtle. Change is the running team’s mascot, and of course he like to kick the crap out of breast cancer.

Cliches and The New Normal

In the past couple of weeks, there have been several times when I’ve paused and thought “What the hell am I doing with my life?” Mostly, these happen at work. It’s not that I don’t like my job, I do – it’s just that the the weight and profundity of what I experienced this year suddenly become so real to me that I wonder why, after it all, I am still sitting at the same desk I sat in last year, staring at the same computer, hacking away at the same 9 to 5. Hanging out with the same friends. Having the same “normal” banter with my boyfriend. Watching the same TV shows. Eating the same food.

Welcome to “survivorship”, I guess. What is it that makes people want to do something profound after experiencing something profound? To me, I just feel kind of lazy and disappointed in myself. I was confronted with what could have been (and still could be) a fatal disease, and yet, when treatment, major surgeries and major life decisions were over, I went back to the same crap I did before I was confronted with my own mortality. There is so much I would like to change about my life and so many adventures I would like to have before I die – why not start now? Because, of course, these things don’t happen in a day and there are realistic limits in life – money, jobs, family, social obligations.

What I really wanted to do was post this article about cancer “rehab”, because it made me think about all the above issues I’m dealing with. I’d love to hear from other cancer survivors who went through this.

New Boobs (Exclamation Point?)

My exchange surgery was a week ago – meaning I no longer have those hard expanders and instead I have squishy new silicone implants. I say this so nonchalantly, yet, 9 months ago it felt like I would never reach this point. The exchange marks the official “end” of the initial steps of my journey:

• Mastectomy – check.
• Embryo storing – check.
• Chemo – check.
• Reconstruction – check.

From here on out, anything that happens is either cosmetic or recurrence. Technically, I am completely finished with this cancer experience.

But am I jumping for joy? Not so much. For the first couple of days after my surgery, I felt like crying (and I did a few times). I was disappointed with the new boobs. Though I myself asked for them to be smaller than they were naturally, I felt (and still feel, to some degree) that they were too small. Where did my larger-than-expected chest go? Why do I no longer look like the girls in the Victoria’s Secret commercials? Dammit, why did I give that up for the “convenience” of having a smaller chest?

Everyone (including me) was so excited about my exchange. My friends want to throw me a boob party. “Can’t wait to see your new boobies!” It’s a lot of pressure to live up to, and I guess I thought I’d walk out of the recovery room already looking like a Playboy bunny. It’s just not so. These funbags need time to settle into place, and if, when they’re settled, I’m still disappointed, then I’ll think about next steps. Going bigger, perhaps, or fat grafting. Whatever happens, it’ll have to wait a couple of months because I’m eager to get my real life back and make 2012 a different year.

And, the larger issue here is probably that I’m finally mourning the loss of my boobs. I never got to do it back in April after my mastectomy, because I was still in survival mode, worrying about fertility and impending chemo. Now that all that’s over, I’m thinking, “Whoa… my boobs are gone?” My whole body has changed – as my whole life has changed. I’m coming to the realization that things will literally never be the same as they were before March of this year.

On two better notes, the silicone implants are dreamily soft, squishy, and natural feeling. And they are shaped great, despite the small (to me) size. Any Tom, Dick, or Harry looking at me on the street would have no idea these were implants. Save for my scars, they probably wouldn’t even be able to tell looking at my without a top on.

And I want to share a painting that I bought yesterday at a local DC art fair. It

Corks, Coasters, and Sugar Cubes, by Phyllis Dillinger (artcure1.com)

caught my eye at first because it was my favorite color, green, but I wasn’t totally sold. That was, until I spoke to the artist and learned that she began painting after her sister died of ovarian cancer and she donates 50% of proceeds from her art to ovarian cancer or breast cancer organizations, it seemed like destiny. And I am now the proud owner of this abstract beauty.

I’m Thankful For…

The boyfriend and I spent Thanksgiving in lovely New Hampshire this year. While we were at Panera grabbing coffee with one of my boyfriend’s friends, I noticed a woman ordering food with her family – a husband, a baby, and a toddler. The woman also happened to be completely bald (eyebrows and all) and she was wearing a head scarf.

Of course I assumed she had breast cancer. Regardless of whether that’s true (and I didn’t talk to her so I don’t know), the situation made me sad. On top of having cancer and going through chemotherapy and whatever other treatments this woman endured, she has to run around after and put on a happy face for her baby and toddler. She has to wonder if she’ll be alive to watch them grow up. She probably worries about the burden on her husband, who is also caring for the children and worrying for her well-being.

I thought I had it bad being just 25.

Reflecting on the event, I realize it was fitting that this happened over the Thanksgiving holiday weekend. Seeing that woman made me realize there are aspects of my situation to be thankful for, including:

• My cancer was caught early.
• My cancer (triple negative hereditary), though aggressive, has very clear treatment guidelines and there is a lot of research being conducted about it.
• My experience with chemotherapy was not terrible – it did not derail my life or leave me with any debilitating life-long side effects.
• I don’t need radiation.
• I am young, fit, and don’t have a mortgage or children to worry about.
• My parents were around to help me through things and ask good questions for me, including the question of fertility which led me to have eggs harvested.
• My doctors are all smart, caring people who respect my questions and decisions and have been extremely accommodating throughout my treatment.
• I have a vast support system, comprising family, friends, the best boyfriend in the whole world who loves me unconditionally, and people I don’t even know who offer words of support on this blog.

I guess the moral of the story is that no matter how bad things seem, there are always people out there who have it worse and it’s important to find the silver linings and positive takeaways from bad situations.

Hope everyone who celebrates Thanksgiving had a good holiday!

Publicity

Go to the New York Times online. Click on “Health”. Guess who that is on the right rocking the bald head? I totally stumbled on this by accident today at work, looking for some articles for my organization’s monthly news brief. What a shock to see a picture of my on the homepage of the NYTimes health section. I’ve always wanted to be in the Times, just didn’t think it would be because of having breast cancer. Still, I’m honored that they thought the photo worthy to represent the whole feature, which you should check out.

It must be said that the photo was taken by the wonderful Rina, another survivor who I met through George Washington University and a photographer.

And in case the page has changed since I wrote this post, here’s a screen shot:

I think maybe all of this publicity is getting to my head (so much so that it’s sprouting hair)!

Article: Triple-Negative Research

Reading: Groundbreaking Research on Triple-Negative Breast Cancer Gets Boost from Komen

While this article has a positive message (hooray, research specifically geared toward triple-negative breast cancer!), it always scares me when the media talks about this subset of breast cancers because of things like this: “Research suggests that triple-negative breast cancers have a higher proportion of cancer stem cells.” It’s so cold-sounding, matter-of-fact. Like if my doctor were to just come out and say, “Cara, you have triple-negative cancer, and that’s bad because those cancers carry a higher incidence of brain mets, grow more aggressively, and tend not to respond to anything other than chemotherapy. So if chemotherapy stops working, you’re SOL.”

Sigh. It angers me that, though I feel so great about everything right now, one silly article can knock me down a few pegs and again bring about these fears of recurrence and death.