I (obviously) failed at my attempt to be clever for this blog title, but it does a good job about conveying the subject matter of this post.
Since joining the DIEP support group on Facebook, I have received a few personal messages asking about things I kind of covered here previously that deserve a little more discussion. I received a couple of direct messages inquiring what my husband thought about my process and, more specifically, my Noobs. I’ve been asked this a couple of times and have, somewhat ignorantly, answered for Mike (my husband, who also has a blog). I’ve said, “He was great about the whole thing. He was supportive of my decision to do the BPM and go forward with the DIEP reconstruction. He helped care for me during my recovery and was terrific the whole way through.”
But, after receiving another message asking the same last night and responding the same, I received this question in reply:
“But how does he think you look?”
In all honesty, my husband (fortunately) tells me very frequently that he thinks I look great. And, to continue on the path of honesty, I sometimes feel like he says it to help buoy my spirits and keep my confidence up. And not have me scratch his eyes out. But I think the criticisms Mike might have about my body have nothing to do with my surgeries. I think the real adjustment came when we had twins and the aftermath of me gaining (and then losing) 70 lbs. I have assumed, over these past 18 months, that he sees my post-op, nude body the same way that I see it; in the dark and somewhat intoxicated. JUST KIDDING. I asked Mike to contribute a post to my little blog and give some spousal, but also community, perspective for those wondering the same. Without any further adieu, I give you my husband…but only for the period of time it takes you to read his post:
My wife Shera asked me to explain how I see/view her body/breasts/scars after surgery. Here are my unfiltered/unedited thoughts:
Addressing the BRCA issue by removing breast tissue was courageous and smart.
Shera spent an enormous amount of time researching her reconstruction options. She formulate a game plan that she was comfortable with and worked well for her. She was fortunate to have supportive and very skilled doctors.
Having the potentially dangerous breast tissue removed was the first leg of the trip. Reconstruction completed the journey.
Shera looks great. Probably better than she did before the surgery. On some levels it seems like that’s all there is to say. But that’s only about 10% of the story.
The scar on Shera’s stomach is massive. It must be a foot-long. But that’s not a good measure of its significance. What defines its significance–and what has helped me assess/understand my relationship with Shera–is that I don’t notice it.
When I see her with her stomach exposed, I see a person. I don’t see the scar. That’s not a figure of speech. I literally don’t see it.
It’s like I don’t have the visual vocabulary for it. Without a word in that visual vocabulary there’s no place to store the image. (Interestingly, I just saw a story about a variant of this concept in the NYT. “There is no word for cancer in most Ugandan languages. A woman finds a lump in her breast, and cancer doesn’t cross her mind. It’s not in her vocabulary.”)
The takeaway for me from the whole reconstruction process and result is a better understanding about what my wife means to me and how I “see” her.
Her breasts are full. Her stomach is flat. That may have been the goal. But I think the best part–at least from my perspective–is the wonderful realization that our relationship has evolved significantly beyond cosmetics.
At this point I’m confident that she’ll look as beautiful to me at 76 as she did at 26. Maybe more so.
“Happy wife, happy life.” Shera is very involved in BRCA and breast reconstruction issues. The experience has been a springboard to the future rather than an anchor to the past. Based on my experience it’s important for husbands that their wives “complete the journey” so that they can look forward rather than back and live rich, full lives.
Mike and me in 2007 (when our only babies were felines).
Dreamy, right?
*Also, since October is Breast Cancer Awareness month, I wanted to have a post from a survivor with a different perspective on reconstruction. My sister, Alyssa, is going to put together a small (but fantastic, I’m sure!) post about her process and why she chose not to have reconstruction. Stay tuned for that, hopefully later this week.
And now, the song that I chose for mine and Mike’s walk down the aisle…
A few days ago I received a comment from Gina on one of my posts saying that she read about my blog on a Facebook group dedicated to the DIEP flap reconstruction process. Upon reading this, I IMMEDIATELY looked for the page on Facebook and found it. And WHAT A GREAT RESOURCE! There are women in so many stages, some still doing research and others (like me) at the end of the journey. If you are looking for additional resources, support, a sisterhood of reconstructed boobs – join us!
You have to request to join the group and then be given permissions by an administrator, but I was in and scouring posts within an hour. This group is amazing and I’m so proud of us all taking care of and looking out for each other.
I’ve inserted a slideshow with all of my progress photos from pre-op through the present. I thought this would be a quick, helpful visual tool for everyone to see what’s in store, without having to read through everything I’ve written here (because it’s tedious to read an entire blog just for a peek).
So, if you’ve been following along, there’s nothing new in this slideshow. And if you’re squeamish (but reading this blog for some strange reason), don’t open the slideshow!
I am totally guilty of being a prime example of our generation of immediate satisfaction. We are all (mostly) spoiled rotten with access to (just about) a litany of information and an entire world (“www”) of potential connections. So it may seem odd that I was totally floored today when one of my surgeons (Dr. Liu) sent me a message in regard to my concerns about my swelling. Sweet, right?! AMAZING! I exchanged messages with Dr. Liu and have some clarity about my swelling.
I know now that my swelling probably isn’t due to fluid on my left side, which was what I was thinking. Since Dr. Liu drained some fluid from my left side not long after I was discharged from the hospital, I thought that my left side might have more fluid hanging around there. But it sounds like my swelling is tissue related and not due to fluid. Dr. Liu let me know that the swelling will improve when new veins grow into my flap, and that process takes several weeks. So, game on! Not that I was giving up on or anything, but feedback and information is so helpful, comforting, and solid. Nice guy, right? Again, AMAZING! And you thought doctors didn’t listen. Pfffffffft.
Speaking of amazing, today was it for Seattle; such a sunny, gorgeous, fun day today. We started our morning off with family breakfast at home (just like everyday), and then we headed over to our friends’ house for a play date and brunch. Our friends, Heather and Jonathan, have an amazing house in Magnolia with an unbeatable view of Puget Sound. They also have a specimen of a cutie pie son whom our girls had a good time playing with. These are newer friends to us but we really, genuinely enjoy their company.
We coordinated this play date before I had my surgery. We put it tentatively on the books because 1) we wanted to get together again and needed it scheduled, and 2) I had no idea what I would feel like at this point when we set the date. I told our friends that I was having surgery, but I didn’t tell them what kind of surgery. I am a fairly extroverted and open person, but I feel like discussing and taking people with me through this process isn’t for everyone. It is very personal and some people are put off by the gory details of surgery and recovery. Being that we’re all just getting to know each other, I didn’t want to unload this on them. So when we were getting ready for our play date today, I found myself slightly anxious. I tried on a couple of things and was thinking, “Does this outfit say post-op, nipple-less, reconstructed noobs? Do I look like myself when I’m wearing this? Do I look like I feel well and frisky and not patched together in this?” I ended up wearing a jumper that kind of matched the girls’ outfits, which wasn’t at all embarrassing until I typed that just now. In short, we had a great time together. We didn’t talk about my surgery, because we (Mike and I) are helicopter-ish parents and our kids were being normal kids and we were trying hard not to freak out. (This all has a point that I will get to when I’m done blabbering.)
When the girls awoke from their afternoon nap at home, we went back outside and took them to play with our neighbors’ two sons. The husband, Allen, was in a skiing accident about a month before my surgery and his Achilles was ruptured. So we’ve both been in some stage of recovery for at least 5 weeks, but him much longer than me. Betsy (the wife) and I got a chance to briefly talk about my surgery and recovery. She didn’t know which type of reconstruction I decided to do, and I told her about the DIEP flap and showed her my abdominal scar. We discussed the sweet, sweet benefit of having my “marsupial pouch” surgically removed and turned into noobs. She was also kind enough to tell me that my noobs looked “fantastic”. Being that I was wearing a probably-too-tight-for-31-tshirt without a bra, I took this as the highest of compliments. The conversation went on for a bit about the steps I have left to complete and the decisions to be made, but it was a nice chat between women.
When we came home, I knew that I wanted to really emphasize something in my post tonight. Pre-surgery, I was so sad and anxious about what my reconstructed breasts were going to be like. I went through a period of mourning for my natural breasts (and nipples) and was terrified that no one would ever say a nice thing about my boobs. Actually, I was more worried that they would notice that these are not my natural breasts. Not like I planned on walking around topless or anything, but I was seriously worried that everyday, in my clothes, people would be able to see and tell that I have reconstructed breasts.
And now that I am on the other side of it, I feel so excited about not having to worry about WHEN I will have breast cancer and the fact that my surgeons did such an amazing job with my mastectomy and reconstruction. Other than a few extra pounds, some nipples and sensation, and an elevated risk for breast cancer – I don’t feel like I’ve lost much. I certainly don’t feel any less feminine or sexy, which were big concerns of mine pre-surgery. I feel I’ve gotten a lot of benefits out of this process. Again, I no longer have a frighteningly high lifetime risk for breast cancer. I no longer have the pocket of twin skin on my abdomen, and my previously full – then flat – and now full again – boobs look good. Or, as Betsy said, “fantastic”. Or, as I like to point out, smaller; firmer. While I do have a large scar on my abdomen, I don’t mind it. I have a sufficient amount of stretch marks to keep me in a one piece. So, in closing tonight’s post, I just wanted to follow up on my first few, fear riddled posts and let women know that this is not as scary, freaky, alienating, un-sexy, or ugly as I thought it was going to be. Day 3 in the hospital was a little bit of all of those things; but Day 39 is pretty damn good.
P.S. I am still undecided about my nipple reconstruction. I will touch on that tomorrow.
It’s been about a week since I’ve been able to gather my thoughts enough to compose a blog post. Basically, my “free time” during the past seven-ish days have been this frothy mixture of crazy and pure lunacy:
Read pre-surgery paperwork for the one-millionth + x time.
Freak out about the lack of useful information on these worksheets.
Continue freaking out, but switch subject matter to the closeness of my meetings with the surgical team to my actual surgery date (2 weeks’ time).
Conclude paperwork related freak out by repeating, several times, “I can’t have coffee or chocolate for two weeks before or SIX WEEKS AFTER surgery!”
Have minor aneurism; take 20 – 45 minute panic induced nap.
Bore my husband talking about all of the universities that have videos of the surgery.
Walk into the bathroom, take off my shirt, and look at my boobs for 5 to 30 minutes in various poses and postures. Realize that I appreciated them more in our “heyday”.
Return to bedroom and lay on the complete opposite side of the bed from my husband lest he get any ideas about touching these precious little time bombs.
Roll around in bed for what feels like an eternity trying to decide if choosing to have reconstruction with implants will make me feel any less like Frankenstein’s Monster than having the DIEP reconstruction.
Fall asleep and dream about all of these things in some foggy, subconscious context.
Despite this insane ritual I’ve developed as of late, every morning I wake up and know that DIEP reconstruction is the one for me. It was an adventure in researching reconstruction photos, videos, and recovery timelines online. I got more than an eyeful and I, somewhat, sanely reached this decision on my own.
Truth be told, I like the aesthetic of the reconstructed breast with an implant better than the DIEP reconstruction. I like the aesthetic of the nipple-sparing mastectomy than the DIEP. I also like the look of my natural breasts better than the DIEP. But with each of these alternatives, there is increased risk.
With the implant reconstruction, there is increased risk because it is referred to as a “life long” surgery. As anyone with implants will tell you, the implants can fail and have to be checked and/or replaced every 10 years (some with more or less frequency). And still, even in this day of advancing technology and medicine, every time you replace an implant you are running the same risks of when you first receive the implants. Being that I’m 31 now, that leaves a lot of potential replacement surgeries, risks, and the recovery times. I am not interested in repeating that cycle of hardships several times over my lifetime.
I also have a very scary, not-so-little secret that I’m looking forward to being rid of, courtesy of this unfortunate situation. Not just my risk for breast cancer, but what is commonly known on T H E G O O G L E as “twin skin” (Note, that is not my belly; if only!). This may come as new to you, (because I’m sure I never mentioned it one or a billion times already) but I have the world’s most wonderfully amazing twin daughters. They are the highlights of my life. They are also the reason I have so much skin to spare for this surgery.
When I was trying to get pregnant, I looked like this.
On our way to the opera.
When I got pregnant, I looked like this.
Starting to show
When I was REALLY pregnant, I looked like this and everyone that saw me in public openly wept and pitied me.
While my pregnancy weight gain was not at all the norm (I gained just under 70 lbs during my pregnancy), I certainly didn’t just let everything go to hell and eat any and everything. I couldn’t because my pregnancy was high risk, or else I would’ve probably tried. I worked out three times a week with a trainer, and then when I couldn’t anymore I still swam. But, alas, here I am now in the not so glorious “twin skin.” But, I digress.
Out of all of this, I am glad to be a) reducing my risk of breast cancer, and b) ditching this scary ass “twin skin” belly of mine. See. There’s some light at the end of this bat shit crazy tunnel of mine. Now, if you’ll please excuse me, I have to go put some lotion in a basket for a special house guest of mine.
shutupaboutit 