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.

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.