You are entering a reconstruction zone

6 Jun
Photo by Erin Lodi, Columns Magazine

Photo by Erin Lodi, Columns Magazine

It’s been a tough couple of weeks here at Recon Central. As I mentioned in my last post, I’m currently going through breast reconstruction, and contrary to the Hollywood version (i.e., a woman decides to get new breasts following her mastectomy and a half hour later is sporting a pair of perfect, perky boobs), my experience has been less than immediate. Or ideal.

Without getting too technical — or too graphic — let’s just say the body’s healing process can be excruciatingly slow, scary and gross. Especially when you’re dealing with radiated skin which is touchier than a hornet on steroids. I’m currently a month out from surgery and Lefty (my radiated breast) still looks like something you might see on The Walking Dead. But while it’s not pretty (or healthy — yet), the takeaway is that I actually have two small breasts where I only had well-developed pecs before. 

And that’s huge (the news, not the boobs).

For those who may not know, I’m doing a different kind of reon than most women (Angelina included). Instead of doing a flap procedure (i.e., where a plastic surgeon cuts a slab of tissue, muscle and blood vessels from one part of my body and sews it to my chest to make a boob) or going the tissue expander/implant route (radiation put me out of the running for that), I decided to use an external tissue expander known as the Brava coupled with fat transfer surgery.

Basically, the plastic surgeon “liposucks” fat from where you have it (goodbye saddlebags!) and injects it where you don’t (hello boobs!).

But before any of that happens, you have to prep the area with this crazy suction cup device known as the Brava. I started using the Brava – or the Barbarella, if you prefer – in early April and wore it for 10-12 hours a day for a month before going in for my first fat transfer procedure.  Wearing the Brava – or as I put it, serving time in “boob jail” — is a trip. The domes are huge and unwieldy and are about as subtle as having two roasting pans attached to your chest.

By wearing them, though, I was able to stretch the skin and promote the growth of blood vessels, both of which helped create a welcoming environment for the tiny droplets of fat my plastic surgeon injected during that first fat transfer procedure (I’ll need at least one more to get my “B-girls” back, by the way).

Not surprisingly, this cutting edge procedure piqued the interest of my editor at the University of Washington alumni magazine, Columns, who asked me to write a personal essay about my recon experience. As usual, I decided that sharing is caring (seriously, I hope this will help people understand what breast cancer and reconstruction can be like for women) and took him up on his kind offer. Here’s the top to the essay and a link to the whole piece.

As always, thanks for the read.  Also, BC buddies, if you’re willing to share your reconstruction stories, I’d love to hear them.

Reconstructing hope

It’s 10 o’clock on a Sunday night and I’m sitting on my couch watching Mad Men, a glass of red wine at my elbow. In many ways, it’s a typically tranquil spring evening — a cat on my lap, the lull of the television in the background — except for one small detail.

I’m in boob jail.

That’s the term I use to describe the two gigantic domes I’ve got strapped onto my unnaturally flat chest. Prescribed to me by my physicians at the UW Medicine Plastic and Reconstructive Surgery Clinic, where I am a patient, the Brava device, as it is officially called, involves two domes made of hard plastic with a thick gelatinous rim that sticks to your skin like bare thighs on a hot vinyl car seat.

There’s also tubing and a little motor and a blood pressure-type hand pump — all of which help you achieve the proper amount of suction. For the past three and a half weeks, I’ve spent 10-12 hours a day with this bizarre contraption suctioned onto my chest. And I have many more hours and days and weeks of boob jail ahead. Why? Because as annoying and cumbersome and claustrophobic as the device is, it — and my UW Medicine health-care team—are helping me do something rather spectacular.

They’re helping me grow new girls.

To read the full essay, click here.

45 Responses to “You are entering a reconstruction zone”

  1. Shari June 6, 2013 at 3:01 pm #

    Hi!

    You are so smart to have taken your time with your reconstruction. I’ve been following your story a little via Twitter and I may be asking questions soon.

    I’m in the middle of a failed reconstruction. I thought I was taking the easy way out and going with expanders/implants starting from the day of the mastectomy in March 2012. Following radiation, my right breast has rejected the silicon implant twice (the most recent time being last Wednesday), so I have to find a different route and start making decisions again. I’ve been blogging through the whole thing, and if you’re interested in seeing what I’ve been going through, feel free to read more at sharisboobs.blogspot.com. (I include pictures of my radiated and scarred boobs so that friends can be informed about what I’m going through.) Best of luck with your continued healing.

    -Shari

    • singleshot1 June 10, 2013 at 2:27 pm #

      Hey Shari:

      Just went to your blog and read a bit about your reconstruction struggles. So sorry for what you’re been through. Sounds scary and intense and frustrating as hell. All of which sum up my surgery recovery so far. I’ve had some complications, mainly from Lefty who had rads. (As you know, radiation screws you but good — all the way down to a cellular level.) I’m seeing my plastic surgeon every week (going again tomorrow). He says I’m making progress even though it’s hard for me to see.

      Take care, thanks so much for writing (and sharing) and yes, feel free to get in touch any time, if you have questions about Brava/fat transfer.

      -Diane “doublewhammied” Mapes

    • Grace Bender June 14, 2013 at 8:13 pm #

      Diane, hope you have good luck with your reconstruction surgery. I had a double mastectomy with nipple and skin sparing in 2008. However, because I had extra skin due to my implants being too small for the breast pockets (I did not have expanders after my first surgery), I too used the Brava system and had lipo/fat transfers in both breasts. While I knew some of the fat would be absorb back into my body, I am sad to report that most of it has been absorbed back and I have several painful fat narcoses.

      Next Tuesday I will start from scratch and have my current implants removed as well as the fat narcoses. This time I will have expanders.

      • singleshot1 June 17, 2013 at 4:14 pm #

        So sorry to hear about your reconstruction issues, Grace. How frustrating to have to go through all of the Brava/fat transfer (months long, as is) and then not have the fat stick around. Did your plastic surgeon have any theories as to why it didn’t work for you? You’re the first person I’ve heard of who has lost all of their transferred fat (I’ve lost about half of mine so far, which is normal at this phase). If you’d like to share more of your experience with me, I’d love to hear your story. Feel free to email me directly at dianemapes@gmail.com. Thanks and all the best to you as you go forward with another round of recon.

  2. Nancy June 6, 2013 at 3:55 pm #

    Excellent Diane, just excellent!

    • singleshot1 June 10, 2013 at 2:27 pm #

      Thanks for the read and your kind words, darling.

  3. Vonnie June 6, 2013 at 5:51 pm #

    Diane – I’ve tried to keep up with your blog since the beginning of your ordeal, but I had an ordeal of my own. Luckily, not breast cancer, but a very scary condition called Fuchs’ Corneal Dystrophy. Very long story short, I lost vision in my right eye and went through 2 transplants and 2 graft failures. But after a year and a half of scariness, I’m getting there.

    This comment isn’t about me tho. Just wanted to say, I’m so glad, first of all, that you see to be doing okay cancer-wise, unless I’ve missed something. Second, that you’re giving us all the gorey details. All women need to hear it and realize that shit happens and it’s not always pretty, but we can get there if we persevere.

    Keep em coming, girl, and stay positive.

    • singleshot1 June 10, 2013 at 2:33 pm #

      Thanks so much for the note, Vonnie, and I’m so sorry to hear about your corneal condition. Sounds like you’ve been through the mill. I truly hope things are better now and that your vision has returned. The healing process can be horribly slow (as I’m learning) but if we’re patient, as you say, we can persevere.

      As for my cancer, it’s still out of the picture, as far as I know. I’m about a month late for my latest quarterly checkup but there’s no point in going in now since surgery (and the healing process) will mess up my white cell count, etc.

      Again, thanks so much for reading my work and taking the time to write. I’m hoping people get something out of my crazy recon adventure. If nothing else, they’ll know what to expect.

  4. steve June 6, 2013 at 8:38 pm #

    Thanks for writing this, Diane. You have more guts than anyone I know.

    • singleshot1 June 10, 2013 at 2:34 pm #

      Thanks for the nice note, Valandra. I don’t know if I have guts. Just doing what a girl has to do to get her own back.

  5. pinkunderbelly June 7, 2013 at 6:13 am #

    I love, love, love the article you wrote! Wow! Many lines from it have stuck in my brain since I read it. I’m so glad to see a real account of the Brava system. My plastic surgeon met with Dr K when Brava was in its infancy. He recommended it for me but I was leery of the newness. I am so impressed that you can manage “boob jail” for 12 hours a day! Seriously in awe. Fingers crossed for nothing but good things from here on out.

    • singleshot1 June 10, 2013 at 2:38 pm #

      Thanks so much for the note, Pink. It’s amazing what we can become accustomed to. Drains, missing body parts, huge doses of poison, baldness, daily blasts of radiation. Why not boob jail? ; ) I’m hoping to write about the rest of the process, which I have to say has made boob jail look like the easy part. Take care and thanks again for stopping by.

  6. @chemobrainfog June 7, 2013 at 10:25 am #

    As usual…. your ability to share your “torture” with wit and wisdom is unmatched! I had not seen this technique (this from the I like to know everything that’s happening in medical world) until YOU began sharing on twitter….

    Hugs and love….
    AnneMarie

    • singleshot1 June 10, 2013 at 2:40 pm #

      Great to hear from you. AnneMarie. You know me and my big mouth. ; ) I’m not one to suffer through ANY aspect of breast cancer quietly. Already thinking about the next installment.

  7. Sherry June 8, 2013 at 10:54 am #

    I just read your outstanding article in the U of W Columns magazine. Thanks for sharing and being so transparent. I have a girlfriend who underwent the same surgical procedure and has had reconstruction but as you say at a very high cost. I will be sharing your article with her as she may encounter others who may benefit from this option. I was impressed that through it all you managed to persevere with your exercising. Way to go!!! Keep up the amazing work.

    • singleshot1 June 17, 2013 at 3:50 pm #

      Thanks so much for the note, Sherry, and my best to your girlfriend. Hope she’s doing well these days. I’m starting to learn there are NO easy options when it comes to breast reconstruction, but I’m definitely glad to see new procedures being studied and offered to those of us who need them.

  8. nancyspoint June 8, 2013 at 1:16 pm #

    Hi Diane, I am not familiar with this technique either. I went the implant route, not entirely happy with them for so many reasons. Let’s just say I miss my originals. Thanks so much for the great article too. You’re informing a lot of women about another option. Keep healing. Keep writing. My best to you.

    Since you asked us to share, here’s one of my reconstruction posts.

    http://nancyspoint.com/breast-reconstruction-another-kind-of-long-and-winding-road/

    And just in case you’re interested in a very interesting convo about “missing them,” here’s a link on that topic as well. Feel free to stop by and share your links since we’re all in this together.

    http://nancyspoint.com/things-we-arent-supposed-to-say-about-mastectomies-reconstruction-breasts/

    • singleshot1 June 17, 2013 at 4:02 pm #

      Thanks so much for the note, Nancy. I’ve already read your “missing them” post (that’s definitely one that speaks to many of us). Will check out your reconstruction post now. So sorry to hear you’re not entirely happy with your implants, although quite frankly, I have YET to meet a BC survivor who has not experienced some kind of reconstruction issue. As they say, cancer ain’t for sissies. ; |

  9. myeyesareuphere June 8, 2013 at 2:48 pm #

    Great essay! Thank you for sharing your experience. I had no idea that this technology was being developed in my own city. The technique sounds incredible and I hope your efforts as a pioneer will reap benefits for you as well as for future women.

    • singleshot1 June 17, 2013 at 4:05 pm #

      Thanks “Eyes”. It’s a little disconcerting being a “pioneer” — lots of unknowns — but I’m hoping everything works out okay in the end. Would love to help other women find another recon option. Our choices are pretty limited right now.

      • myeyesareuphere June 17, 2013 at 4:48 pm #

        Yes, our choices have been the same choices for many years. Thanks again. -Elizabeth

  10. myeyesareuphere June 8, 2013 at 2:49 pm #

    Reblogged this on My Eyes Are Up Here and commented:
    Here’s a description about a new reconstruction technique. It sounds amazing!

  11. Peggy Brooks June 8, 2013 at 3:29 pm #

    I started reconstruction back in 2008 and didn’t know about this option then. I went DIEP, also to radiated lefty. I developed a lot of fat necrosis in the exact same places after reconstruction rounds one and two. I still need to address nipple and would love to replace fat necrosis with something better–both because it would look/feel better and because all the hardness and lumps and bumps are exactly where my two original tumors were, which freaks me out regularly. A couple years ago, I actually contacted one of these Brava doctors to see if their device/approach could help me with my fat necrosis issue. Could it deliver a successful third stage for me? My impression at the time was they aren’t using it for this widely (though someone should be looking into it, imho). Also they were too far from my locale, I doubt I could get insurance coverage out of network exception for the work and I had to move on to other things demanding atteniton in my life. Maybe someday this type of approach or something like it will be widely used for women in my situation–I think there are a lot of us out there. Good luck to you!!!!!

  12. Cancer in My Thirties June 8, 2013 at 6:09 pm #

    Well written and informative. Wow, what a process! I’ve toyed with the idea of reconstruction now that my surgeons are giving me permission (Iong story! — I’m 3 years out from diagnosis), but I’ve never heard of this procedure before. Thanks for the education and for sharing your story! I’m looking forward to reading more.

    • singleshot1 June 10, 2013 at 5:43 pm #

      Thanks so much and best of luck with your reconstruction. I’m looking forward to writing more!

      • Cancer in My Thirties June 10, 2013 at 7:43 pm #

        Thank you — not sure if I’ll muster the courage to do it (especially with everyone in my life discouraging me! ;-) ).
        But I am glad to have found your blog and look forward to reading more about what you’ve been going through.

  13. The Accidental Amazon June 8, 2013 at 6:12 pm #

    I have wondered what BRAVA is really like. So glad you are writing about it. Your candor is invaluable.

    • singleshot1 June 10, 2013 at 5:42 pm #

      Thanks so much, Amazon. I loved the blog post you did about various recon methods. So glad there are new techniques coming down the pike. Brava/fat transfer is far from perfect but I’m thrilled at the prospect of growing new girls without sacrificing muscle or suffering additional incisions/scars. Of course, I’ve already learned no method of recon comes without a cost – especially when dealing with radiated tissue. {sigh}

  14. Linda Thompson June 9, 2013 at 1:46 pm #

    Diane, I read your story in Columns (I’m a UW grad., ’63). Next month is 30 years since my second set of implants (first set too big); replaced when ruptured 9 years later. Lots of immune system warnings (e.g., aching hands) until I had those removed in 1993, and along with the scar tissue protecting my body from silicone came most of my pectoral muscle. It’s amazing that the FDA approved silicone gel implants for everyone (not just breast cancer patients) in the early 2000’s because our implant-survivor groups testified before the FDA, NOW, etc. I put out a newsletter to hundreds of survivors across the country; I personally got MS Magazine to take a stand (versus freedom to choose for women who were dissatisfied with their breasts or had lost them). The Dow Corning bankruptcy and class action settlement came next. Now, it seems like none of that ever happened–our efforts are not even history. I sure hope that this procedure (fat transfer) is more successful. I also miss my lat. dorsi muscle (used to build the flap) and have pain and weakness in that area. Plastic surgeons are not the most responsible/morally upright doctors in the business! I regret ever having had reconstruction.

    • singleshot1 June 17, 2013 at 4:41 pm #

      I’m just starting to learn how difficult reconstruction is – and that’s using this new “less invasive” method. I can’t imagine what you’ve been through, Linda. I’m encouraged to see new recon methods (as well as safer implants – or so they say), but what I’d REALLY like to see is an end to mastectomies. Let’s hope research can turn the corner on prevention/eradication of breast cancer soon, sooner, soonest.

  15. Facing Cancer Together June 10, 2013 at 8:04 am #

    Fascinating – this is an option I’ve heard of before. Thanks for this article. It’s a must share with our online FCT community. ~Catherine

    • singleshot1 June 10, 2013 at 5:39 pm #

      Thanks Catherine, and yes, please feel free to share with any and all BC sisters.

  16. ozhiggins June 10, 2013 at 10:44 pm #

    Wow, I had never heard of this option either, thanks for sharing, I can now mention it to any clients who are thinking of reconstructing – great to have other options.

  17. Jane Holbrook June 11, 2013 at 12:11 pm #

    Thank you, Diane. I read your article in Columns, and appreciate your candor as well as your delightful way with words. What a brain you have! And what a heart! The hope that you give is awesome. Pioneering a new reconstruction technique is not for the faint of heart, but I see so much coming from this approach for many areas of healing.
    Since there is not the quick fix for cancer that we had hoped with the early advent of chemotherapy, we need lots of encouragement for patience and perserverence. Incorporating nutritional support and a holistic approach is vital. You tackle the whole shebang.
    I will share your blog with all of my friends. Our little community does it’s own version of the Komen fund raising race; “Hike for Healthy Hooters.”

    • singleshot1 June 17, 2013 at 4:33 pm #

      Thanks for the lovely note, Jane. Patience and perseverence are what it’s all about when it comes to cancer — and definitely when it comes to breast reconstruction. Some days I feel like I have very little of either but am just taking this one day at a time and keeping my eyes on the prize. Please feel free to share any of the info on my blog with your friends and BC buddies. Also feel free to pass on more info re your fundraising efforts!

  18. Yvonne V. Richardson June 13, 2013 at 9:24 pm #

    Diane –

    I am glad to hear that you are succeeding through a tremendous ordeal. You are uplifting to more people than you know. I admire your wit, your tact, and your strength.

    I appreciate your positive attitude, and your intelligent and insightful opinion.

    Hang in there, be patient, courage and a zillion other things. You go!

    • singleshot1 June 17, 2013 at 4:34 pm #

      Thanks so much for the kind, encouraging words, Yvonnne. So, so appreciated.

  19. Grace Bender June 14, 2013 at 8:20 pm #

    Unfortunately, the Brava system and lipo-fat transfer did not ultimately work for me. In the end most of the fat was reabsorbed back into my body. But, I will never give up. Starting over again on Tuesday from scratch with expanders which I did not use in 2008 with my first surgery. My doctors have all been wonderful and Brava did what is was suppose to do; but the fat didn’t last.

  20. Laurie Anderson June 21, 2013 at 7:48 pm #

    Oh, wow! Just read the article you wrote for U of W “Columns” and I am completely blown away by your openness, your humour, your compassion and on and on and on.
    My story started in December 1983, 3 weeks after my husband of 24 years died of a massive heart attack on the Big Island of Hawaii. I wanted to make sure I was well so scheduled a complete physical exam……..asked for a mammogram but was told “if you want that you have to pay for it yourself as you are under 50 years of age!’ What a bunch of BS!! But, I said okay………..and, what do you know………..I was a candidate for “boob jail”. But, just as I was to have my breast biopsy to “make sure”, my appendix ruptured so that delayed the “b” job. Finally, all alone as we had no children and my mom and dad had both passed (except for wonderful friends and neighbors) I had the surgery but absolutely put my foot down when it came to chemo or radiation. I had a great job and back then even big companies weren’t too sympathetic with extended sick leave…….. Ultimately breast reconstruction (remember it was 1984 and Happy and Betty had just “come out” with their “b” job stories)……..it wasn’t the same as today; not many options. But, I did it and I’m glad I did. I eventually met the love of my life, whom I married, but when, after 3 months of dating I told him about my “b” job, he laughed and said “good thing I’ve got small hands.” I knew he was a keeper! Sadly, no one told me then that silicone breast implants normally would only last about 20 years……..well, mine are nearly 30 years old……..but have ruptured to the point I wonder sometimes why I even wear a bra! Have been told that Medicare won’t pay for new ones….why not? they didn’t pay for the ones in 1984! Oh, well, my husband still has small hands and I’m still here! Laurie

  21. perk June 21, 2013 at 11:38 pm #

    Strength and courage to you. My own reconsruction surgery did not go as planned. I did not want anymore scarring so opted for an implant but alas my radiated skin did not cooperate. No prosthesis for me…lopsided is my fu to cancer. I enjoy reading ur blog and hope ur reconstucion is a beautiful success!

  22. Jeanne Crose June 23, 2013 at 3:28 pm #

    Read your essay in the June “Columns” issue, and say ‘Brava’ to you. Being a trailblazer in any medical procedure is a tough road, but you will benefit a lot of people, and in a sense you were not a volunteer. Best of luck as you proceed. I have had several friends in recent years have breast cancer surgery, and they haven’t volunteered whether they got implants or not. This sounds like a good alternative in several ways, but it is still a challenging course of treatment.

  23. karenjmom October 23, 2013 at 9:34 pm #

    Bravo for your openness! I overshare, too, and think it is healthy. I’m a 2 year survivor.

Trackbacks/Pingbacks

  1. You are entering a reconstruction zone | thebreastlife - June 6, 2013

    […] You are entering a reconstruction zone. […]

  2. [links] Link salad rises up into the air and explodes | jlake.com - July 4, 2013

    […] You are entering a reconstruction zone — Breast cancer survivor Diane Mapes on reconstruction. […]

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