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.

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.

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.

My breast surgeon on GMA

Check this out – my breast surgeon, Dr. Christine Teal, was on GMA this morning talking to Robin Roberts about her prophylactic double mastectomy.

http://abcnews.go.com/assets/player/walt2.6/flash/SFP_Walt_2_65.swf

It was pretty cool to see the woman who operated on me go on TV and advocate for this procedure, as controversial as it is. Dr. Teal has a family history but no BRCA gene and no cancer herself, so some might find this a bit extreme. Still, it made me feel wonderful to know my surgeon was as adamant about eradicating her own chances of breast cancer as she was about mine, and seeing what she said about the strength of us breast cancer survivors made me tear up a little.

Go Dr. Teal!

Creating new cleavage

Today was my first tissue expansion! It was actually kind of a “yay” moment amidst all my anxiety about starting chemo (Thursday… eek). For those of you who don’t know, during my mastectomy, the plastic surgeon implanted expanders under my chest muscles. Throughout the next couple of months, these will be gradually expanded so that my skin and muscle stretch enough to make room for the real silicone implant, which I’ll have inserted after all my chemo is finished. That’s called the exchange operation – when the temporary tissue expanders are swapped for the real implants.

Because of the revision I had to have a couple weeks ago, my surgeon had to take down the left expander to almost nothing, and I was quite lopsided. But today, she filled the left side with 120 ccs, almost 2/3 of the way to matching the right side!

Yay for being a little less lopsided and a little more womanly. Yay for being so healed from surgery that my surgeon is okay with expanding me. Yay for not even feeling the small pinprick of the saline tube needle, which was inserted into a port on the expander so the saline could be injected in. Yay for not feeling much tightness or soreness at all, at least not yet. Yay for preemptive Tylenol.

And yay for this article, which totally excites the singer in me: Cancer charity gets funding for choirs after proving the pyschosocial benefits

The Art of Healing

Almost two weeks post-mastectomy! Still feeling wonderful; honestly, I think one of the hardest aspects of this whole experience has been finding a comfortable way to sleep. If that’s my biggest annoyance, I’ll take it. I’m also becoming a bit of a hypochondriac, freaking out with every small pain or stretch or movement I feel, thinking my sutures have torn or my expander has burst. Luckily, my stepmom is a nurse and my dad is a doctor, and at every step they reassure me that I am fine.

What I really want to talk about today is my job. I work as an office manager for the Society for the Arts in Healthcare, a wonderful organization that promotes the arts as integral to healthcare by providing resources, professional development and educational opportunities, and a forum for networking, learning, and furthering the field with colleagues. This past week, we held our annual international conference in San Francisco. Unfortunately, I was not able to go due to the timing of my surgery, but I was so proud to hear a feature about our conference and our organization’s work on San Fran’s local NPR affiliate, which featured our board president, some past board members, and callers who shared stories of how the arts have positively impacted their healthcare experiences. It was a wonderful broadcast and I encourage you all to listen: KQED feature “Healing with Art”.

One of the things I have been down about lately has also been the skin on my left breast, which is not looking so great and taking longer to heal than I expected. I so much want to heal perfectly, without any necrosis (dead skin) or need for further surgeries to correct things, which would give me a less natural cosmetic result. Today, after stepping out of the shower and still feeling disappointed in the state of my skin, I thought about the broadcast and my organization and decided to write a poem to improve my feelings about my skin.

While I don’t usually like to share my creative writing, I like this poem and think sharing it will enhance my positive feelings because I know all of my readers are behind me every step of the way, and I want to add my testimony to that of others who find the arts a powerful healer. Here goes:

“Healthy Skin”

The color of healthy
skin is pink. Peach if
you’re a Caucasian coloring
with crayons.
In shadows black skin
emerges, but the best
we can hope for is pink
underneath. Blood,
oozing, is a good sign,
scary as it is.

Cream is slathered
on the skin, like icing
on a cake, the surgeon said.
Covering up the black
and ushering in the pink,
the blood, the blisters
that pop and reveal soft
pink, underneath.

I hope for pink, because
it is the color of healthy
skin.

Back at home and it…

feels so good. By home, I mean I am at my parents’ house in Philadelphia for two weeks to recover in comfort before I have to return to DC for some follow ups. Thank goodness for teaching hospitals that have spring break – because my doctors will be off, it means I get some much needed time away from the hospital and I get to be in a big, light-filled house with my parents, who are wonderful cooks, instead of in my teeny little apartment in DC with an endless supply of frozen pizza. It’s the small things in life, I tell ya.

Today I am one week post mastectomy and I feel great. As I posted yesterday, the doctor relayed the verbal path report she got from the pathologist, which showed all negative sentinel nodes. They are still waiting for something called an IHC report, which, in rare cases, shows some cancerous cells and can cause them to go back over the other tests they’ve done more carefully, but the surgeon assured me this was only in rare cases. So, as I said, I feel great with all the news we’ve been receiving and with my recovery.

In case you want to see what hot post-mastectomy wear looks like, here’s a pic of me (no face included) wearing my compression bra with the post-mastectomy drains pinned to it. Don’t look if you’re squeamish – the drains are filled with red fluid and I’ve got bruises on my lower belly from the heparin (blood thinner) injections they did at the hospital.

Surgery Update

My bilateral mastectomy was on Tuesday afternoon – but before I say anything about that, I just want to thank all of the wonderful people who reached out to me and expressed support on my blog. Though I don’t know you personally, it is amazing to know so many people care about me, understand my situation and my decisions, and are sending thoughts, prayers, and positivity my way.

And now – I am recovering from surgery. One reason I ultimately chose to have my surgery in DC with the surgeons Dr. Teal and Dr. Lenert from GWU is because they could fit me in so quickly. I was diagnosed on March 21st, and today, on April 8th, I am already three days out from surgery. Wow.

I am feeling good, too, and so so happy with my surgeons and team and all of the nurses and techs who took such wonderful care of me at the hospital. I was definitely anxious leading up to the surgery, but things were happening so fast and I decided to continue to work, so my mind was distracted. On Tuesday morning, I was definitely filled with trepidation. In the morning I had an injection of radioactive material into my right breast to locate my lymph nodes, and it hurt pretty bad. There were three very small needles that the doctor inserted under my skin around my nipple, and what stung was the actual stuff that they injected. Not pleasant, but it was pretty cool when the tech showed me the picture of how my lymph nodes lit up.

From there I was taken up to the pre-op ward, where I had to undress, answer a lot of questions, and meet with my surgeons and the anesthesiologist. The anesthesiologist asked if I wanted some “happy meds” to take my anxiety away, and boy did I! Once that started in my IV, I felt a bit lightheaded and then… blackout. I remember nothing until I woke up on my back and a guy next to me (a nurse? Surgeon? Who knows!) said, “You’re done!”

I hung out in post-op for a while with a wonderful nurse named Amelia, and my family came to visit. My brother, stepmom, dad, and boyfriend were there and it was great to be with all of them – and be on pain meds which allowed me to be happy about the whole situation.

The first thing I wanted to know out of surgery was the diagnosis on my lymph nodes. Luckily, the breast surgeon said the preliminary reports indicated they were clear of cancer. I was THRILLED to hear that, though we’re still waiting on a final pathology report. Also, I though “sentinel lymph node” meant only one, but apparently I had 8 sentinel lymph nodes and they took out all of them. Interesting.

I spent two nights in the hospital with very little sleep – a) I cannot sleep on my back and b) people are constantly coming in and out to check on me, administer antibiotics and anti-clotting medication, and give me pain meds.

And now I am in a hotel room with my parents continuing my recovery. I do feel a lot of tightness and soreness in my chest and I’m a little afraid to look at my boobs because they are so different and bruised, but other than that I feel very positive and good.

I hope that I will be able to blog throughout this situation, not just because it’s therapeutic for me, but because I want women to be able to hear what this is like.

Crazy Expensive Drugs, and Thoughts for a fellow BRCA-er

Several news sites were abuzz yesterday with the prospect of the FDA revoking its approval of Avastin, a drug used to prevent tumors from growing in people with very late-stage breast cancer.

Here’s an article from the Washington Post: FDA considers revoking approval of Avastin for advanced breat cancer

While it’s not immediately relevant to my situation or that of many previvors, it was shocking for me to see how expensive these cancer-treatment drugs are. The article says that the producing drug company has a program that caps yearly payments at $57,000 for women with income less than $100,000 – that’s more than HALF the woman’s income spent on one drug! Crazy.

I also want to send thoughts toward another woman who blogs about BRCA and is a great supporter of our mutated little community. Teri Smieja, whose blog is here, has been struggling with some post-surgery complications. You can read about them in her August 14th post.

While I have not yet decided to have surgery and I don’t see myself having surgery for a while, reading about this does make me scared for the day it eventually happens. Please support Teri in her journey and let her story be a warning and a learning experience in your own BRCA journey.