June 19, 2017. One year ago today. I so vividly remember the moment that the phone call came from my genetic counselor. I remember how I sat at my desk feeling like the breath had been knocked out of me after I hung up the phone. I remember knowing instantly that everything would be different.
In the 365 days since I found out I was BRCA1+ life has been anything but normal. There were days upon days spent with doctors, inside machines, MRIs, mammograms, ultrasounds, biopsy, manual exams. There were weeks of anxiety waiting for results. Waiting to find out of I have cancer. There was the joy and hope of learning I was pregnant followed a few weeks later by the heartbreak of learning that it was ectopic and therefore not viable (and potentially dangerous). There was the agony of deciding we would not try again for another biological child, and the nervous excitement of beginning the adoption process. There were surgeries. Two of them. Ovary and tube removal in January and prophylactic mastectomy with DIEP reconstruction in April. There were the side effects of surgical menopause – hot flashes, weight gain, insomnia. And the long (and on-going) road of recovery from my mastectomy. There were weeks upon weeks where I couldn’t pick up my child, and there still are days when I can’t look at my naked body in the mirror. I am different, oh so different, both physically and emotionally, than I was 1 year ago before the phone rang.
In my first meeting with my plastic surgeon he asked me why I was leaning towards DIEP reconstruction versus implants. Among my many reasons (which I plan to write more about soon) was this: “I really only want one surgery”. He smiled and basically said (I’m paraphrasing here) “Yeah, that’s not gonna happen”.
Implants have a life span, they need to be swapped out after 10 or 15 years. And the expander to implant route, which is still the most common path, involves the initial mastectomy + expander surgery, months of doctors appointments to get fills, and then another surgery to exchange expanders for implants. That all seemed like way too much of a time commitment.
I had this fantasy of having it all done in one big surgery. I go into the operating room with boobs, I wake up with boobs, and they’re mine for ever and ever. The end.
Two months ago today I was sliced open on a table in Greenwich, CT. Five pounds of breast tissue was removed from my body and it was replaced with five pounds of flesh from my belly. Arteries were reconnected, blood began to flow to the new mounds on my chest, and I was stitched and glued and stapled back together. It still sounds like science fiction to me. But here I am. Sitting in my office at work, the scars (physical and emotional) largely invisible to everyone I come across.
Sometime in the past month the great relief I felt about getting through the surgery with a clean pathology report and surviving those first few weeks of recovery has morphed into sadness and frustration. I’ve gotten stuck at feeling about 85% back to normal for the past few weeks…which I know is not bad…but it’s also not great. What’s most frustrating is that after making leaps and bounds in my recovery early on, things really feel like they’ve stalled and stagnated. Actually I feel like I’m taking little baby steps in the wrong direction.
I’ve officially made it to two weeks post-op! Overall I’m feeling good. I still have quite a bit of swelling but it seems to be going down…albeit slowly. My pain is minimal, controlled with regular ol’ Advil a few times per day and I’ve been able to do normal human things like driving (short distances), dressing myself, taking walks around the neighborhood, and preparing some simple meals. And as of today I am cleared to go without my cumbersome abdominal binder! My doc’s office said it’s up to me if I wear anything on my midsection now…but I’m not feeling ready to go without any support so I’m wearing some classic high rise Spanx.
I still get tired out very easily and I’m moving slowly when I’m up and about. My range of motion is pretty good so I can reach overhead without help, but bending over to pick things up is uncomfortable (my toddler has been endlessly amused watching me pick up his toys with my feet). I can’t believe I still have a month before I go back to work! Resting and being sedentary is so far from my norm that I get antsy sometimes, but I try to remind myself that even though I’m feeling good I shouldn’t push it because there’s a lot of internal healing still going on.
Now that I’m (hopefully) through the worst part of recovery I’ve been reflecting on what things have been most essential for me in this healing journey. I know some people reading this blog are preparing for surgery of their own, so I figured I’d share my “Recovery Essentials”. Hopefully it’s helpful to someone out there!
I’m officially one week (well 1 week + 2 days) post prophylactic double mastectomy with DIEP flap reconstruction and I have 3 pieces of good news to share. First, the pathology report came back from my breast tissue and it’s all clear! Second, I had my post-op appointment with my plastic surgeon yesterday and he is very pleased with how everything is healing. Third, I GOT MY DRAINS REMOVED! Hallelujah!
As I’ve been reflecting on what my healing journey has been like so far I found that things are naturally falling into two categories: things that I expected, and things that have surprised me. So that is how I’ll structure this update.
So it happened. I did it. Prophylactic double mastectomy with DIEP flap reconstruction. I’m home from the hospital and by all measures recovering well…although I’m still terrified of something going wrong. But we’ll get to where I am now…let’s start with a recap.
Surgery day: Woke up at 5am in our Air BnB to drink 16 oz of gatorade and take my pre-op meds. Followed this up with a shower with special antibacterial soap. Then around 5:45am we headed out the door a drove the couple miles to the hospital. I was checked in and promptly whisked into my pre-op room. I first met with a nurse who set me up with an IV port, then checked in with my breast surgeon, met the anesthesiologist, and saw my plastic surgeon and his co-surgeon. After about an hour in the pre-op room it was time to kiss my spouse goodbye and get wheeled off to the operating room.
I saw my surgeons and nurses in the big bright room, and took a moment to access the visualization from the meditation I’d been doing for the last 2 weeks. The anesthesiologist came over, and as my breast surgeon told me a funny story about her daughter’s school picture day I slipped into unconsciousness.
We’re really here, aren’t we. My preventive double mastectomy is tomorrow. My bag is packed and in the car. My post-op prescriptions have been filled. My body is marked up with sharpie – a road map of where my surgeons will be making their cuts. I attempted a serious heart to heart talk with my 2 year old this morning about what’s going on to which he replied “Ok….Mommy, did you see that snow fall down?”. So much for that.
Other than tying up a few odds and ends at home — prepping food for my kiddo for the rest of the week, making my post-op clothes easily accessible, filling out the last form or two for my doctors — there’s nothing left to do but wait. Oh, and take my little guy out for a pizza date tonight as promised (if he still wants to after his nap, that is).