I could feel the tears coming on. I tried to fight the urge to sob, because I was in the middle of the metro during rush hour. This is no place to have a water works show. But I was reading Why I Wore Lipstick to my Mastectomy, and it just hit me as hard and fast as the trains breezing past me on the platform. While doctors won’t be cutting off my boobs, they’re cutting them out. I’ll wake up from surgery with two large wounds where my rack used to be. What will it be like to wake up from surgery and look down to see them gone? Within weeks I’ll have them back. But they’ll never be quite the same. The thought of saying goodbye to my girls, especially in those last moments, is all too painful sometimes. The thought of all those scapels is even more painful.
When my cousin picked me up at the metro, the floodgate broke loose. Once in the car, I started sobbing so uncontrollably it was hard to catch my breath. “Maybe you need more time to think about all of this?” Mary finally asked me. I think that’s it though. I finally am thinking about it. The magnitude of my decision just caught me a little off-guard around page 52 of my book while riding the red line train to Shady Grove.
I mean, I’ve had one wisdom tooth removed, and that was the only time I’ve ever been under anesthesia. The first time I had my blood drawn was for the genetic test! In high school, I used to cry so hard after a flu shot that it made the nurses uncomfortable. “You’re my first patient to cry today,” said the pediatric nurse, who had just seen a whole slew of toddlers. Needles of any kind have never been my friend, let alone scapels. How can I be brave enough to have a total mastectomy?!
Then I kept thinking some more. I want the doctors to also remove my nipples because they carry a high risk of breast cancer just like my breast tissue. But what will be come of my nipples? Will the hospital just throw them away? I don’t want to keep them, because I can’t imagine anything more creepy, but I also can’t imagine them in the trash. Where will my old breasts go?
There will also be tubes stitched to my chest to collect fluid for a few days after my surgery. It’ll hurt to breathe. It’ll even hurt if someone sits on the bed. I’ll probably need a bed pan, because I can’t imagine scuffling anywhere, not even to a nearby restroom. While all of this amounts to nothing compared to battling breast cancer, it still scares me to think of the surgical details. Is there anyway I can teleport myself to the last reconstructive surgery when all of the pain, blood and “wound fluid” will be behind me?
Since my boobs are always on my mind, I’m noticing the little things that will change or won’t matter once I have the surgery. For one thing, I’ve always worn skin-tight sports bras when I run. In middle school, someone told me that if your boobs bounce around too much during exercise then they’ll sag like an old woman’s rack. I did not, by any means, want saggy boobs by the age of 30. So I thought I’d plan for the future and cut off a little circulation in order to keep my girls perky. I guess I can loosen up on that one now.
Ever night before bed, I religiously take three delicious gummy bear vitamins, a nasty-tasting iron supplement, and my vitamin D-3. I keep all three lined up in my medicine cabinet like artillery. After all, I’m fighting to keep my health. Vitamin D-3 is the one I never forget, because it’s known to promote breast health (among many, many other things). This is one of my new power tools. With each white supplement I take every night, I envision it arming my breast cells with the defense they needs to ward off the cancerous enemy. And my maximum strength vitamin D-3 is my body armor. But since I won’t have my old breasts for much longer, I guess I can chuck the armor out the window pretty soon.
I also find myself starring at women’s breasts a lot. Totally weird, I know! But I just can’t help it. My breasts won’t have quite the natural curve like other women’s breasts. AlloDerm will help a lot. But there will still be a difference, one that only I will probably notice. In the meantime, I’ve taken to studying the boobs I see on the bus, on the metro, in the bars, at the restaurants, and even in church. I look at small breasts, large breasts, medium-size breasts. Everywhere I notice what I will soon no longer have.
After my surgeries, my boobs will look better than they do now. But I also love my current breasts. I’m trying to pay them tribute the best I can until the scapel comes to take them away. I’ll still wear a bra to work, but I’ve decided to retire my bra to the dresser for most other occasions. I want to feel my breasts and my nipples against my shirt, I want to know that they’re there. After all, I won’t have sensation anymore after the surgery. Luckily, I’m only a C-cup, so they’re pretty manageable on their own. Although, my sincere apologies to my friends and family, you may see more than you want over the next few months. It’ll probably only get worse after my mastectomy. I plan on flashing all the women in my life, so they can see what a mastectomy looks like. You can’t say I didn’t warn you!
I also think it’s a sign that you’re talking too much about your mastectomy when your roommate dreams that she looses her nipples and has to get them reconstructed. Rachel said they looked great, but I think I need to ease up on the boob conversation at my house. I also need to spare every poor, unsuspecting stranger the news of my upcoming mastectomy. The man swipping my membership card at the gym looked a little shell-shocked. So did the cabbie. I need to practice better censuring, so I’ll try to limit most of my boob ramblings to this blog. Although, Rachel, I was relieved to hear that your new nipples in your dream looked great. But you have better things to dream about than breast reconstruction, my sincere apologies!
Teri Smieja
September 3, 2010 at 2:36 amHi there – I just wanted to try to alleviate some of your fears about your upcoming PBM – I’m about 9.5 weeks post op from mine, so can speak from experience.
First I’d like to say that it’s totally normal to feel the way you feel – many of us feel the same way prior to surgery. You are normal in that.
As far as what you said about your nipples, that’s not exactly true. I thought the same thing as you and was convinced that I wouldn’t keep my nipples. About 2 weeks prior to my surgery I changed my mind. As it turns out it’s actually pretty rare for breast cancer to form in the nipple, even among BRCA+ folks. My breast surgeon explained to me that unless you have Paget’s disease it’s not usually a concern. I went with the skin sparing, nipple sparing DIEP reconstruction. It’s been strange for me, because I never did have the experience of looking down to do nothing on my chest.. since I went with immediate reconstruction (even though it’s considered ‘immediate’ it’s still a process though, and typically at least 2 stages of surgery).
As for the bedpan – I’ve heard many other women with this same worry. I never used a bedpan. I had a catheter in the first day, then the next day I was up and moving around – slowly – but still – I was up and able to go to the restroom to do my business. You probably will be able to do that too.
Anyway, just wanted to share a lit bit with you to ease a few of your fears.
If you’re on facebook, maybe you can look up my group, the BRCA Sisterhood – there are a lot of women there that can really help to encourage you and help you with your fears.
Best of luck to you – plenty have traveled this path before you and come out the other end of it, and you can do it too. Hang tough!
Teri
Claudia Gilmore
September 3, 2010 at 2:37 amTeri – thank you so, so much for sharing this with me!! The more women I speak with, the more I realize how popular nipple-sparing reconstruction is these days – sounds like the risk of breast cancer when you keep your nipples is pretty slim. I’m definitely revisiting the thought of keeping my nipples now and weighing my options again. This is such a big decision to make – it’s good to know you can change your mind as soon as 2 weeks out from surgery!! I may end up going back and forth every week until then! Have you had your expanders removed yet? Thank you again for being so open – your experiences have alleviated many of my fears – and I’m anxious to hear how the rest of your reconstruction and recovery goes! Have a safe trip to NYC tomorrow and a GREAT time with your new BRCA friends 🙂 xoxo, Claudia
Teri Smieja
September 3, 2010 at 2:38 amHey you! Yeah, I was pretty much dead set against keeping them, thinking if I was going to do this, then I wanted it all out & off – but when I started to research it more and found out that breast cancer in the nipple is rare, and then speaking with my breast surgeon, I decided to keep them. They also told me I could keep them through the first phase, and if I changed my mind later, I could have them removed during Stage 2 – it was hard to pass up a trial run, ya know? So I didn’t go the expander/implant route. I had the DIEP which used my tummy fat to reconstruct my breasts – if you’d like to see pictures just email me and let me know (terisblip@verizon.net). I’m still ‘under construction’ and have some ‘issues’ right now with symmetry and aesthetics but that all gets fixed during Stage 2.
Also, I’m so glad you joined the BRCA Sisterhood! You’ll soon see how great these other ladies are. 🙂
Thank you so much, for the well wishes, I’m so excited to have a girls weekend, it’s been YEARS!! 🙂
Eli
September 3, 2010 at 8:39 amYour surgery will be nothing like that seen on TV – you’re young and 22 and will be up and moving in no time. Pain meds do wonders!!
Also, I know it’s kinda creepy or weird, but have you thought about having someone take photos of your “girls” or even doing a mold of them. There are those pregnancy molds that people do of their bellies, I’m sure you could use the same thing but just for your boobs. Just a thought. A way to keep them around forever, but not.
Claudia Gilmore
September 3, 2010 at 2:39 amHey, Eli! Thank you so much for your note 🙂 I’ve been speaking with more and more women who have had the surgery, and they’ve said the same thing as you! When you wake up, you’re so drugged that you don’t know which end is up – thank goodness!!! One lady told me last night that they want you to get up and walk around almost as soon as you can – which is a huge relief, because the thought of sitting around also prompts some anxiety – I’m always on the move! And over Labor Day weekend, I’m flying back to Los Angeles so my old photography teacher from high school can do a shoot of me topless with my natural breasts – it’ll be a special way, like you said, to remember my natural form forever 🙂 Thanks again so much for following my posts and leaving such thoughtful comments – you’re the best!!
Angie Blevins
October 25, 2010 at 6:46 amJust posting my name is a reality check.
Hello. I am 39 as of this past July and found out in march of this year 2010 that I have breast cancer. It was shocking to find out at 38 so I can only imagine how you feel being even younger. I had a lumpectomy in march and tested negative for BRCA 1-2. However, my news was that they did not get it all and they highly recommend with having such a high chance of the cancer returning later anyway, to have a double mastectomy. I was on Medicaid since being laid off during the hard times and they cancelled my coverage of Medicaid shortly after the lumpectomy. I have since not known what to do without insurance knowing I need the mecsectomy/reconstructive surgery still. Do you, anyone or anyone’s doctor know what I can do? It’s bad enough being horrified having to go through something like this to the point of little sleep and nightmares when I do, let alone now the non-stop worry of wonder if cancer will win my life over now due to no insurance. Email me or call me if anyone has any insight and I will be following your blog for I too hope to put this behind me some day soon. Thank you so much for being on here.
Angie Blevins
Majesticangeluv@yahoo.com
720-308-4486
Valerie
November 9, 2010 at 5:49 pmI think you are soooo BRAVE!! and so young to have to deal with all this.(I’m 49) But I think you will be pleased with your decision in the long run. I didn’t have cancer or test positive for the gene, but have been having numberous biopsies and a strong family history. When my last biopsy came back ALH (precancerous) I chose to have double masectomies. That was in May, and really the surgery wasn’t bad. I had tissue expanders put in for implants later on. Great drugs the first night, went home the next day with pain pills and took them for three days and then just tylenol. The drains don’t really hurt – I drove myself to the doctor after seven days to have them removed (didn’t hurt either). Then six months later I have had the exchange to silicone implants and am very pleased. Hang in there – and thanks for sharing this!!!!
Hugs, Valerie
Missy
November 23, 2010 at 9:45 pmHi – I wish you the best with your health and surgeries. I’ve read your story, and some of your friends’ – I’m suprised that I’ve never heard of young ladies getting preventative masectomies before. When you go in for your surgery, make sure that you have someone chatty and uplifting with you all the time – to distract you from becoming terrified. It’s too bad that you can’t nurse your babies, but you will be able to hold them (and cuddle your granchildren), and honestly, nursing your babies is great but has a downside too, and you’ll certainly have a nice set for the rest of your life. Hold a positive image in your mind – maybe even create a rhyme for it, so that you can chant it if you start to panic. (I did this when I learned to drive – it was “palm trees, curvy streets, and squirrels watching me” – to remind me of the peaceful place I first drove in.) I wonder why some of the ladies with BRCA don’t get cancer – do they have another gene that makes cancer less likely, did they nurse a lot of babies, or never take birth control pills, or did they just die of something else first. Hopefully research will advance so that your daughters don’t have to make these decisions.
Angela
December 7, 2010 at 3:37 amHi,
I saw your story on the news, which got me motivated to do some research of my own, I am 41 and at the young age of 20 I was diagnosed and treated for Hodgkins I had radiation to my chest area. I have always wondered about the effects the radiation had on my breast, Once I ask my doctor if I should have my breast removed and he laughed at me, I never mentioned it again, but after seeing your news story I made an appt with a breast surgeon, who listened to me and understood my concerns, after 2 weeks of research she called me and told me that my risk is slightly high and increases, having the surgery is an option, she admitted I am the first person with this history and concern see her, but after her research, she learned a lot and wants me to seek a surgeon in Chapel Hill, who may have more experience with cancer survivors treated with radiation. Just hearing her say, surgery is an option was kinda a relief, but scary at the same time. I have had cancer once and know the fear If I can reduce my risk of getting it again, I think it is worth it. I will defiantly be reading your blogs, I will need all the courage I can find to do this. I will be going to chapel Hill after the holidays. Although I am not a BRCA, I am at risk in a different way but still the same. Radiation saved my life 20 years ago, I dont want it to take my life now. I am thankful there is options!
Previve
December 22, 2010 at 2:04 pmWow, Angela, thank you so much for sharing!!! You have an incredible story and know that we’re here to support you in any way we can! As you can see under Previvor Stories (http://previve.com/?page_id=185) there are a lot of women who have paved the path for us – their stories are incredibly inspirational – I often look to their words when I’m feeling nervous about what lies ahead. But should you ever need to make this decision, know that you’re in good company! I’m also so relieved to hear that you’ve finally found a doctor who listens to your concerns and takes them very seriously – what a relief to know you’re finally in good hands! If you ever need additional information and/or support, you can reach out to FORCE (Facing Our Risk of Cancer Empowered) at http://www.facingourrisk.org. Sending you lots of love!! xoxox