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.

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.