Happy Mastectoversary!

A year ago today…

I was in the hospital recovering from my double mastectomy, which was April 5, 2011. I almost would have let April 5, 2012 go by without a thought but my boyfriend reminded me it was a year since my surgery.

As I sit here now, typing this, I don’t have any sense that April 5th is a monumental day in my life. It probably was when it was happening, but not now. I read about all these young women who have prophylactic mastectomies and achieve peace of mind that they’ll “never” get breast cancer. I’m glad for them, but even after my double mastectomy, I still fear getting breast cancer. Again.

Is this normal? I tell myself it’s just being realistic. People get recurrences, even after major surgeries to remove breast tissue. I hear about it more than I’d like to. In the shower, I still run my fingers over my skin to make sure there are no lumps. Every time I feel a weird soreness or sharp pain or other strange sensation, I have a fleeting fear the cancer has returned.

Peace of mind would be great. But a year after my surgery I’m still not there.

And now this has turned into a really negative post that doesn’t accurately reflect my mood today (It’s Friday! I am going home for Passover! It’s spring! Team Peeta!) so I want to also say that this fear of cancer doesn’t consume my every day and paralyze me (except when I’m crazy like with the dizziness episode) – it just exists. I think it’s something I’ll live with the rest of my life. Maybe that’s just the difference between previvors who have mastectomies and survivors who have mastectomies.

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.

Survival of the Nipplest

I just got home from a follow-up appointment with my plastic surgeon. Last Tuesday, she grafted my left nipple into place and today, after dramatically removing the dressings that have been on the whole week, she said, “It’s pink!” and that she was optimistic that the graft would take, though she can’t say for certain just yet that it will. I am feeling good – after all the devastation after my mastectomy with my skin that wasn’t surviving, it’s nice to have some hope that my chest will have a beautiful future. Also, my port is OUT and the scar from its insertion has been cleaned up and looks fantastic. Low-cut shirts, here I come!

Coincidentally, I also received a note from my insurance company today that they will not cover the hyperbaric oxygen treatments I received back when we were trying to save that dying skin. I guess it’s true what they say, just in reverse: when one door opens, another door closes.

In other, extremely exciting news, MY HAIR IS GROWING BACK! You can see a bit of fuzz in this picture, but this was about two weeks ago and now there is quite a bit more hair on my head. I have a defined hairline, and it’s getting darker and longer almost daily (at least that’s what everyone tells me). Eyebrows are pretty much kaput, though, but I’ll take what I can get. More pictures will be forthcoming (as soon as I can locate the USB cord for my camera).

Finally, I wanted to share yet another article inspired by the movie 50/50 – have you seen it yet? It’s about comedy and cancer, and while it jumps around quite a bit (I had a hard time following it, but that might be because I had one of my fave TV shows Hoarders on in the background) it’s a worthwhile read.

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!

The Number of…

Days since my double mastectomy: 34 (passed the month mark!)

Days since my reconstruction surgery to remove a large area of dead skin on my left breast: 10

Days since my egg retrieval: 4

Embryos my boyfriend and I now have frozen: 4

I almost never thought this day would come. Two weeks ago, on the night before my revision surgery, I could hardly breathe and hardly sleep. Everything was overwhelming me and making me anxious. First off, I was injecting a lot of hormones into my system as part of the in vitro course to prepare for my egg retrieval. On top of that, I had been so happy with my reconstruction results but it was all going to hell in a handbasket because there was a large area of dead skin on my left breast right under my nipple. The area was so large that my plastic surgeon couldn’t even say with any certainty how she would sew me back up after removing it, or that she would even be able to at all – I could have new scars, a vacuum that would require several days in the hospital, or a flap – and I had no idea what I would come out of the surgery looking like.

Well, it wasn’t that terrible. She was able to remove the skin and sew me back up using the same incision made for my mastectomy. Sure, my left breast is now flat making me lopsided and my nipple is way down at the incision line, requiring a couple more revisions to put it in the right place, but I’m banking on the fact that she’s a good surgeon and I’ll have a good final outcome no matter what.

It still really sucks that I have to deal with this complication, though. So many bloggers post pictures of their beautiful new breasts and I guess I just thought, since I’m young and resilient, things would be easy-peasy. Now that the breast cancer is gone from my body, I have my whole life to look forward to and appearances count. I don’t want to live with a deformed chest – but I’m confident that I won’t have to – even if things don’t return to normal until a year from now.

The news that I was able to bank 4 embryos was extremely exciting. Before the retrieval, I felt very disappointed that my ultrasounds only showed 7 big follicles. A young woman like me should have 20+, so what the hell was my problem? My parents said it was stress, and my doctors also pointed to the fact that BRCA1 seems to be linked to early egg depletion. Great. Not only is my biology trying to kill me with breast and ovarian cancer, it’s also trying to prevent me from having my own children.

We hoped that all the follicles would yield eggs; no such luck. Only 4 eggs were retrieved. But the next day my doctor called and gave the good news: 100% fertilization success. Overcoming great odds, all 4 of my eggs had fertilized! That’s 4 chances at a pregnancy if chemo renders me infertile, which I’m hoping it won’t in the first place. Will and I refer to our embryos as our “frids” (frozen kids), and it’s a little strange to think our possible future offspring is waiting for us in some liquid nitrogen column in West Philadelphia.

Whew. Revision surgery is out of the way. Retrieval is out of the way. Healing is going really well (now). What’s next? Moving back to DC, getting back to work, and starting chemo. I wouldn’t say I’m looking forward to any of it – lazing around with my parents, who are excellent cooks, has been great and chemo will probably suck, but it’s the next step in the process and it means things are moving along as they finally should.

And it was great to come downstairs for breakfast and see this article about the Philadelphia Susan G. Komen Race for the Cure on the front page of the Inquirer.

I am Michael Jackson

So I spent the afternoon in a hyperbaric chamber at Capital Health System in NJ. If you had asked me two months ago, “Cara, do you think that, in two months, you’ll be diagnosed with breast cancer, have a double mastectomy, and spend two hours in a hyperbaric chamber breathing pure oxygen?” I’d have said, “Hell no.”

I guess stranger things have happened.

I took a "dive" in one of these hyperbaric chambers this afternoon.

Basically, my plastic surgeon is not happy with how the skin on my left breast is healing. I have a very large area under my nipple down to my incision (which is at the bottom fold of my breast) that has turned a waxy white, kind of like a third degree burn. She described it as full-thickness skin loss, and in layman’s terms I think that means that the surgeon just removed so much breast tissue that my remaining skin is too thin to reconnect to a blood supply, so it is dying off.

I saw the plastic surgeon on Monday and she said she was still not happy and would like to schedule a revision surgery. I cried like a baby. I just felt like things were coming crashing down around me again. My surgery went so well otherwise and I was so disappointed that my skin didn’t get the memo that I was supposed to heal with no complications! I was also terribly frustrated to have this setback when I had already moved on to my next step in this whole breast cancer journey,  embryo retrieval. Everyone says to take things one step at a time, and I thought the surgery step was over, so to have this setback made me really upset.

When I was done crying, though, I put things into perspective and realized it isn’t so terrible. I am cancer free. All negative nodes. My right breast looks great. I can handle some skin removal and perhaps having a lopsided chest for a while because my surgeon will have to take down my left side expander to let the skin heal. I can also probably do the retrieval at the same time. Deep breaths.

Back to the hyperbaric chamber – my wonderful father who will do absolutely anything for me suggested it and fast-tracked me to the wound care department at the hospital he works at so I could see the vascular surgeon about whether hyperbaric therapy would help my skin heal. The surgeon said he thought it would be beneficial, so now I’m making like Jacko and taking a daily ride on the hyperbaric highway.

Anyone else know people who have had this therapy after surgery? I read about it on one message board but I’d love to hear from others. Or just others who had to lose skin after mastectomy. It’s apparently pretty common and it is pretty traumatizing especially on top of everything else a breast cancer patient goes through.

Forever On Hold

Breast cancer is overwhelming. There are so many issues I’m thinking about right now:

• Insurance.Yesterday I spent an agonizing amount of time on the phone with GWU hospital, my insurance company, and my
  

  This isn't me, but I probably looked like this yesterday.

  oncologist’s office trying to get rid of a $1,000 bill for an MRI that should have been pre-certified. I realize this should be a minor worry in my life right now, especially because we got final path reports and I am THRILLED to have finally confirmed that my cancer was Stage I. But I can’t help feelings of anger that dealing with insurance companies is almost a full-time job and no one can give me straight answers to my questions.

• Fertility (and insurance). I have decided to go ahead with embryo freezing, along with my boyfriend who I lovingly referred to the other day as my “frozen-baby daddy”. The decision was tough – this is a complicated process that requires a lot of doctor visits, drugs, injections, a minor operation, etc, but the decision feels good because it gives me the best probability of having my own children in the future. I didn’t want to go through chemo, become infertile, look back and say “Why the hell didn’t I freeze my eggs?” Still, the process is already causing me stress and it hasn’t even started. I couldn’t get a straight answer from my insurance company as to whether they cover retrieval and IVF, so I’m applying for financial aid from Sharing Hope for Women program. I also just went off my birth control last month as advised by my radiologist, and I’ve been spotting for the past two days, but as it’s been a bajillion years since I’ve had a period while not on birth control, I have no idea if this is a period or not. Why is it important? Because if it is my period, I gotta get a jump on this egg retrieval process ASAP. TOO FAST, TOO FURIOUS.
• The skin on my breasts. There are spots on both my breasts that the plastic surgeon “doesn’t like”. I don’t like it either. One very large spot under my nipple on my left breast was turning black and is now a weird brown, and there was a big blister that popped to the right of it. My incision (which is along the bottom fold of my breast) is also iffy. I am terrified of getting necrosis and needing revision surgeries and, if worse comes to worst, losing my expander. On the right side, the problem isn’t as bad but there are some very small areas of imperfection. Come on, skin, pull through!

Does this swirling tornado of crap that comes along with a breast cancer
diagnosis ever die down? It doesn’t help that today is the first day in a long time that I’ve been alone. Both my parents, who have been amazing and taking care of me since my surgery, are working today. My boyfriend is back in DC, also working. And I am all by my lonesome, with my armageddon-worthy thoughts (well… and my JP drains, which feel like my new best buds). 

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.