The Emperor

I’ll admit I don’t understand this article. Also, I didn’t read all of it. Coincidentally, I also stopped in the middle of reading the author’s (Siddhartha Mukherjee) book, The Emperor of all Maladies. 

I stopped for two reasons: 1) I was bored and 2) it scared the crap out of me, because most of the examples in his story were people who were treated and then had recurrences that killed them. Originally, I thought it would be interesting to read a history of cancer. The first couple chapters were really interesting (did you know that one of the first recorded cases of breast cancer came from an ancient Egyptian papyrus, or that mustard gas played a large role in the development of chemotherapy as we know it?), but then it got really scientific and I was less able to follow. It also really brought me down to read story after story of failed courses of treatment. Not what I needed after finishing my own, seemingly “successful” treatment.

Needless to say, I am now reading mindless fiction (Neil Gaiman’s American Gods). I just thought it was important to mention Mukherjee’s article and book, because for doctors, scientists, or others who really want to read about why cancer treatment is where it is today, it’s probably a worthwhile read.

Basser Research Center will focus on BRCA

This is fantastic news. Dr. Domchek was my oncologist in Philadelphia, and she is a wonderful and renowned researcher in the BRCA field. I couldn’t be happier that my hometown is getting this research center. I hope to be able to participate in whatever research they have going on in the future (as a survivor, of course – I’m kind of done with the cancer patient thing and don’t plan to do it again).

Survey says…

You should eat right and exercise.

While I’m not sure I really needed a guideline to tell me this, it’s great to know that the American Cancer Society has officially issued the recommendation that doctors talk to cancer survivors about maintaining a good diet and exercise because there is sufficient research to show that these actions help prevent recurrence.

You can read about it here (before you hop on that treadmill).

February Drama

We’re coming up on the one-year anniversary of my breast cancer diagnosis. I’m not exactly celebrating for a couple of reasons… the biggest being the nerve-wracking week that I’ve had.

Last Wednesday, I came home from work early because I was too dizzy to function. Best way I can explain it is vertigo – and it all started when I woke up. It was extremely troubling and my oncologist set me up with a general practitioner to see the next week, but by dinnertime I felt much better so I didn’t make the appointment.

The next day I felt fine and the next. But over the weekend I discovered a hard ridge-like area on my right breast and started freaking out all over again that the cancer had returned.

On Monday I was able to see my oncologist and she was not at all concerned, but she let me get an ultrasound for peace of mind. It all looked normal. Phew – one disaster averted.

Then Wednesday night again I had dizzy feelings – not as much vertigo as slight nausea, lightheadedness, coldness, and not feeling “normal”. This morning I woke up still feeling nauseous, which went away quickly, but I felt a lot of pressure in and around my head – migrating from behind my eyes to the back of my neck and, currently above my right ear.

I am totally confused about what is going on in my body, but I know I don’t feel right and I am worried and scared. My immediate thought, thank you breast cancer, is that I have a brain tumor. Such a drastic conclusion for what are probably benign and uncomplicated symptoms, but that’s what having cancer will do to you.

To relieve my fears (best case scenario), I am having an MRI tomorrow.

I should be happy – I’m going to get this checked out, find out it’s nothing to be worried about, and move on with my life. But I’m scared %&*@less and it’s making me feel like a crazy person. I had surgery to remove the cancer, which was stage 1. No lymph node involvement, no signs of spread anywhere. I had aggressive chemo. There is really no reason to believe that I have a tumor in my brain, other than these weird dizzy spells, which could be caused by a myriad of other minor disorders.

My doctor again says she isn’t terribly concerned – my symptoms aren’t consistent with what she’s seen in brain cancer patients. More like a low-grade viral infection. My dad agrees.

But I’m having the MRI anyway, despite the professional advice and my own fears. I keep having these visions (not literally, or I’d be even more concerned about a brain tumor) of sitting at my parent’s house tomorrow as I receive the news that I my MRI showed a brain tumor. It feels like last March all over again, just thinking about how drastically my life is going to change (AGAIN) if that happens. The weather woman on my TV drones on and on about cold fronts and all I can think is, “The whole world will melt away tomorrow if I find out that I have metastatic cancer.”

What is one supposed to do with that news? And how is one supposed to live a life where every “off” feeling leads to the unshakeable dread that cancer has returned or spread?

I guess we take it one day… one test… at a time. My ultrasound was fine. My MRI will most likely be fine. And once those are out of the way, maybe I can stop worrying, at least for the next three months.

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.

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.

Moving on to Ovaries

Today I had my first appointment with a gynecologic oncologist. I liked her a lot – she went through my history and explained the standard procedures for ovarian cancer screening – yearly CA125 blood tests and vaginal ultrasounds every 6 months. Easy enough, though I can’t help but worry about this first CA125 test because… well… you all know what happened with my first MRI.

I’m hanging my hat on the fact that ovarian cancer generally strikes later in life

I'm coming for you next.

than breast cancer, but you can never be too sure so I’m not going to say anything until I get my results.

It was kind of surreal sitting in an office talking to a doctor about having my ovaries and fallopian tubes removed. That measure was so far from my mind 4 years ago when I found out my BRCA status. Because my mom had breast cancer and I never knew her mother, who passed away from ovarian cancer, I was much more cognizant and scared about my breast cancer risk than my ovarian cancer risk. But now that I’ve been there and done that with breast cancer, the reality is I have to think about ovarian cancer, and getting those parts removed is my next step. Ideally, I won’t develop ovarian cancer and I’ll have the surgeries when I’m 32 or 33, after having kids naturally.

Reconstruction

I guess I should mention I had surgery on Tuesday. Nothing huge, but my port was removed and I had some work done to my left breast, that pesk that didn’t heal properly after my double mastectomy so it’s taking a couple extra steps to get it looking normal before I can get my implants. With all that happened this summer, a small surgery didn’t strike me as big news. In fact, it felt pretty routine – being in the hospital, putting on the gown, getting my blood pressure checked, answering all the “Are you pregnant, how much do you weigh, when’s the last time you had anything to eat or drink, etc.” It was all very nonchalant, which in some ways scares me, because surgery should always be taken very seriously (especially by the surgeons who are coming at me with sharp objects).

I kept telling people that, after chemo, surgery is almost welcome in my life. Not so much for the act of surgery itself, but for what these surgeries represent: reconstruction. Getting put back together. Getting a beautiful, new chest that I can flaunt on our Hawaiian vacation in January, along with a short hair-do and the anticipation of a year that won’t revolve around cancer.

As I said, the surgery consisted of a port removal, which I am thrilled about. I own a lot of scoop-neck and v-neck shirts, and it was so hard to hide the darn thing. Plus it made me feel like there was an alien poking out of my skin, and the scar was wide and ugly (though they tell you that it’ll be “no more than a couple centimeters”, right on your chest where everyone can see those couple centimeters make a big difference). On the sound advice of my parents, I asked my surgeon to take out the port instead of the interventional radiologists who put it in, and I am hoping that means a much cleaner and less noticeable scar. I still can’t say yet as it’s covered over with a bandage.

On my breast, the plastic surgeon cut out my nipple, which was right above the fold,  much lower than it should be, and grafted it into place to match my right side. It’s all still under bandages, but I’ll see things on Monday when I have a follow-up with the surgeon.

Luckily, I’ve had no significant pain – took a couple Percocets Tuesday after the surgery because the port removal incision hurt, but haven’t taken anything since. And I’m glad to have this time off work, too, because work has been crazy and will be crazy for a couple more weeks. I just have to make it through this year to January!

A note about my last entry: I hope I didn’t sound full of myself. I’ll admit, I felt pretty badass when they approached me to make the video. Yes, I thought, my story will make great fodder for a documentary: young girl, dead mother, unfortunate genetic predisposition, bald, etc. And a small part of me wanted to do the documentary for myself – to talk about my experience and have things on tape so that I never forget. But even more so I wanted to show that young girls do get breast cancer, and they can get through it. For all the doctors who said to other women, “You’re too young, come back in 6 months.” For all the young women who felt alone and that all the others in the support group didn’t understand the unique issues that young people deal with. For anyone who didn’t want to hear, “But you’re so young” and “How unfortunate” and “You’re going to get through it and live a long, happy life”. That’s who the video (and this blog) is really for.

Me in the New York Times!

Now that I’m done chemo, I don’t feel as inclined to blog. Maybe it’s because I have less to complain about. It could also be that I’m getting back to life and I’m busy with friends and work (which is REALLY busy right now). Either way, I am happy to report that I feel fantastic and am looking forward to my upcoming surgeries in October and December, which will hopefully result in my having a beautiful rack.

Today I have two things to share. One, I’m in the New York Times feature “Picture Your Life After Cancer“! Sure… I submitted myself… but it’s still exciting. Second, the article Breast cancer: patients with mutation diagnosed earlier than previous generation. When I first saw the title of the article, I thought it would be about women getting diagnosed earlier because they start screening earlier in mutation carriers. But the article comes to a different conclusion: that women with the mutation get cancer earlier than the older generations in their family. I think my explanation is better (though who would take my word over the people at MD Anderson). It just makes sense that if women start screening earlier, they’re going to find breast cancer earlier. My mom could have been screened at my age, and perhaps they would have caught her cancer before it was so far gone that there was nothing they could do about it.

New-ropathy

I guess I thought I’d be the woman who doesn’t get all the common chemo side effects. Everyone told me I would “do so well” with chemo – I’m young, in good shape, have a positive attitude, and so on and so forth. Well I’ve learned that being young, in good shape, and so on and so forth does not preclude you from feeling common chemo side effects, no matter what anybody tells you.

My current battle is with peripheral neuropathy, which has manifested in me as a strange, pins-and-needles-like sensation in my fingertips and, less prominently, the soles of my feet. It’s not painful, just annoying because I feel it everytime I type, hold a pen, or do anything else that normal people do several times a day with their fingers. Everything I read says it’s reversible, but I also worry sometimes that it won’t ever go away. It’s been pretty constant since my second Taxol.

And while we’re counting treatments, I want to proclaim that I have JUST ONE LEFT! September 1st marks my last infusion and I am so, so, so ready to be there. I’ve heard from a lot of women that reaching the end of treatment is sometimes hard, and I can understand why that would be – you’ve spent several months being monitored closely by a medical team, you’ve endured countless side effects and emotions, you’ve received well-wishes and extra love and care from family and friends and then… bam! You’re not really a cancer patient anymore. You’re a survivor… supposedly… until you get a recurrence… but that’s a whole other story.

While I see the sadness that can come along with ending treatment, I also think I’ll be ecstatic. First and foremost, my hair will start growing back! I’ll have normal work hours, be around most weekends to hang out with friends, avoid being pricked and prodded every week, and I’ll be able to schedule my final reconstruction surgeries and emerge in 2012 with new boobies and a new outlook on life. So close…