December 30, 2014 - The club you never wanted to be in

I opened the email to read that this very morning she had been tested for the BRCA (breast cancer) gene. Her mother had breast cancer in her 40’s and the daughter’s gynecologist recommended she get tested. Insert that dreaded feeling of having sent off for a test and now waiting the weeks for a determination. Not a fun few days, I imagine. I was surprised to find that the email was asking me for words of advice. My reply was a simple “no words until you have a definitive answer” and uttering on about panties in a wad for no reason, hoping for the best, may be a moot point. But the email had my mind pondering. What WOULD my words of opinion be?

A few summers ago I pondered this question for myself in a blog post titled “The Burning Question” (http://tradinginthetatas.blogspot.com/2013/05/may-5-burning-question.html). I recall asking Ron “did we make a mistake in doing this?” As we dissected that question and in turn wrote the words on the screen, I realized regret would not be in my vocabulary of this experience. I don’t want to answer that same question from someone else regarding what path they should choose. It is a personal decision that no one can really walk you through or to. We can share our experiences, but a choice to undergo prophylactic mastectomy is not a decision I want to help you make. Not because I don’t deeply care for you and want to support you, but because I don’t want anyone to ever look back with regret and think of my words of advice. Nor do I want you to find yourself grateful for your decision and think back to my words of advice. Instead I want the decision to be all yours but based on being informed either through the eyes of my experience or that of someone else you may know on this same path. You may fly through with flying colors, or you may find yourself status post multiple surgeries and complications. I simply want you to know that each surgical outcome is individual and not necessarily predictable. You may find yourself consumed with emotions or you go in the OR one day and leave that same day all the same. It’s not predictable. And experiences are certainly not transferrable.

In prophylactic mastectomy:

·        You may feel guilt. As one person put it “we just picked up our ball and went home before the game even started.” We chose to dodge the bullet instead of facing the beast. There’s guilt in choosing that path as so many women face breast cancer. You can at times feel lesser of a woman as a result. But as another friend put it “no one looks down on you for saving your life”. There is no shame in being proactive.

·        You may feel vain. You lop off both boobs in a life sparing measure and find yourself maybe not totally loving their reconstructed counterparts. It would be less vain to remain boob-less indeed, but as I learned in mastectomy, these things carry a powerful sense of self that you would never guess until they are no longer at home on your chest. Sure we banter and prod each other with jests of sag and droop and sizes of miniscule and boulder proportions, but the minute they are no more, you find that sag and droop was absolute perfection. These breasts that use to be a nuisance now carry with them a sense of womanhood and you find just how endearing they can be when you choose to make them no more. My one point of advice I will offer, if given the choice, do immediate reconstruction. If you don’t have that choice, just know you may feel some things you have never felt before during the waiting period. And it’s normal.

·        You may feel pride, and that emotion will surprise you! There is a sense of pride when you can bring yourself to choose removing your breasts. Kind of a feminine empowerment. Or maybe a sense of if I can do this, then I certainly can do (insert whatever you want)…. It’s subtle, but it may be there underneath the other emotions that take forefront on any given day.

·        You may feel financial burden. Even when covered by (and even encouraged to pursue) insurance companies still only pay the majority. The reminder is still rather pricey. So know this in advance. Ask questions up front and get price estimates and quotes from your hospital. Insurance companies are required by law to cover reconstruction if they cover mastectomy, but it still isn’t 100%.

·        You may feel frustration. You will have many restrictions immediately after surgery. You can lift this, you can’t life that. You can take a sponge bath, you can’t shower. You can’t change your own bandages, depending on where they are. You can’t change your clothes by yourself when you can’t lift your arms. And for risk of being too blunt, you may or may not need help in the bathroom. You will have to rely on someone to help you in many areas and for those of you that are super independent, this is incredibly frustrating.

·        You may feel a strong need for a female friend. There are going to be some female things your male counterparts just won’t understand. My husband recognized this early on and called in my mom for reinforcements. Find yourself a gal you want to do life with and put them in your mastectomy pocket. There will be plenty of moments for female laughing (and maybe crying).

·        You may feel indecision. No matter which option you choose, removal or not, you will wonder if you made the right decision. Particularly when things get tough. But as with any choice in life, you do the best you can with the information you have on hand at the time. Do your part to educate yourself, choose, then don’t look back.

·        You may feel nothing at all.

So instead of advice, I can only offer up this 130+ page blog of the triumphs and trials of boob 1 and 2.2. I don’t regret my choice, though it was plagued with 3 more surgeries than intended at the point of the decision, as I am wiser for it and now most certainly to be breast cancer free. After all of this uttered on the many preceding pages of screen, I still would lay down on that table as I did August 7^th. But I know many may not choose that same path given the same experience. In fact, I still haven’t found another woman who chose this fate in my same circumstance (though I am sure she is out there), but I have met many who have chosen his path in response to a BC diagnosis or a BRCA gene confirmation. If you choose to “go for it”, these are women who can share their perspective with you because though we all had very different and similar journeys into mastectomy, I know not one who won’t choose advocacy for you and yours. It’s a club you never want to be in, but once you find yourself inducted, you most certainly feel loved and supported as we all learn the boob is much more complex than we realized and an envelope of skin is never just that. 

December 15, 2014 - Drains, Buttons, and New Boobs. A trio of delight. (Warning: contains pictures)

A few of you were asking a while back for more details on the Breast Drains. Those awful little plastic pliable tubes that create nothing but misery for the beholder. There is no love. Nothing but a loathing that seems to be uniform for all those lucky enough to wake up from a surgical slumber to find them nesting in their breast. They serve a mighty purpose as they literally drain out accumulating fluid that would pool in the breast sack if the drains weren't present. They promote healing time and for some help reduce infection risk. So we have to argue that they are a tremendous addition to both the mastectomy and reconstruction surgical process, but despite their accolades from health care providers, we as retainers of such drains do hate them. Hate is not a word I utter very often, but I do not want you to miss my loathing. I hate drains.

My friend, Rachael, is undergoing reconstruction this month and she sent me some pictures of her drains and buttons (see below) for me to show you and was ok with me disclosing her name. I, in my journey, neglected to capture pictures for you of the drains. I think I must have subconsciously not wanted to give them celebrity status as done in a picture. I wanted them to feel neglected and inconsequential, but in that decision I wasn't able to visually prepare you if you find yourself at mastectomy’s door. She was so gracious to send me her pictures for educational reasons. You can see the drains below – long plastic tubes with bulky bulbs attached at the end. They start inside the breast, then at the exit site they are sutured into place to keep them from shifting around or completely falling out. The bulb has a “button” on the end, which is opened and closed a couple of times a day and emptied after recording the volume amount for the surgeon. Less drainage, better healing time, and the sooner you can pop those babies out! What you can’t see of the drain is inserted and coiled up inside the breast. At times you may have 2 drains (usually following mastectomy) and at times you may have 4 (usually following reconstruction).  If you hate drains like I do, your surgeon may refuse to tell you how many you will have when you wake up from reconstruction so you actually will show up for the procedure and you don’t dread it so much. Oh so kind. The cumbersome details of the drains is you have to “hook” them to your clothing. They are heavy and if they aren't hooked, you risk them dropping abruptly and yanking on the sutures where they are inserted into the breast. And that, folks, is a ton of fun. It’s like a day at the circus, but without all the cute performing animals, amazing acrobatic tricks, and fluffy pastel cotton candy. Ok, so it’s more like a dental procedure without anesthetic. Full disclosure, right? Just trust me, you want to do everything in your power to prevent that “yank” from occurring.

What you do and don’t want to do with drains, and I may or may not be speaking from personal experience (smile):

1. Do NOT clip them to your waist band. You risk heading to the bathroom, pulling your pants down, forgetting they were there and find that you have pulled on the suture stitch. You will know if you have done this because the scream can be heard all the way at the grocery store down the street.

2. Do NOT clip them to you shirt. You find you go to change shirts, forget they are clipped and find that you have pulled on the suture stitch. Again, You will know if you have done this because the scream can be heard all the way at the grocery store down the street. (However, the shirt is the better option than the pant if you have to choose.)

3. DO consider wearing a beautiful ribbon, tie it around your neck, and clip the drains to the ribbon. It’s fashionable and reduces the risk of tugging on the sutures. Also this ribbon can be hung in the shower, once your surgeon clears you of course, to hold your drains up out of the way. Obviously your pants and your shirt fail here.

4. Do NOT let your husband “milk” the drains trying to get every drop of fluid out of the drain line. He may want to do this is if he is a handy-man, or in some cases an engineer, as it is in his nature to have complete removal. This milking causes a suction pressure to develop within the breast and it will create another scream that can be heard around the world. Open the bulb head, empty drain into a measuring cup, record the volume, close the bulb, and then reattach the bulbs to ribbon. That’s all you need to do. No awards for the clean drain lines, my friend. Trust me, you can skip that and save you some not so pleasant experiences.

5. DO feel free to throw a basin at your husband should he accidentally forget to ever so gently lay the bulb on the table while he goes to empty the drainage in the sink. The first time is a freebie, the second you should at least yell “duck” before you hurl the basin in his direction.

6. DO consider cutting a “v” notch in the side of your sports bra.  This V allows the lines of the drain to slip out under your bra without having the tension of the sports bra’s bottom band pressing on the drain. Every bit of pressure on the drain pulls on the suture stitch more.

7. DO consider using some medical tape to “tape up” the drain so that you create some give around the insertion site and allows something between your insertion site and the accidental pull should it occur. The “pull” will be stopped by the tape instead of by the suture stitch.

8. Do NOT feel bad if you have a few tears because of the drains. They aren't comfortable. In fact they are downright uncomfortable. But you will get through it and they will be out in no time flat (you should expect several days up to a week or two depending on how soon your drainage lessens.)

9. And here is a freebie that I observed in Rachael’s pictures. DO wear a tube top! It’s brilliant in that it is so much easier not to have to navigate sleeves when you are restricted to not being able to raise your arms up above your head. Brilliant! And now I wish I had figured that one out for myself as I picture those nights Ron, my mom, and I were fighting the wardrobe issues at the end of an exhausting day.

On to the “buttons" seen in the picture below. I did not have this procedure done but wanted you to have this information should you need it. Buttons are used to hold grafted skin in place. Sometimes during mastectomy, so much (hopefully all) of the breast tissue is removed that you find the area under the skin becomes super thin. When that happens, the surgeon will take donor skin and attach it to your skin to provide extra thickness. The skin graft is held in place by buttons while the donor skin incorporates itself into your skin. Once that happens, the buttons can be removed.

Bruising. You can see her sides are significantly bruised. And you may recall seeing bruising in my pictures from last April following my lipografting surgery. This happens when fat is suctioned from one area on your body and then inserted into the breast as part of reconstruction. For those women who are candidates, this reconstruction of the entire new breast using your own fat results in a breast that feel and possibly looks more natural. It’s a bear of a procedure though with extensive recovery times from what I hear. For others, like myself, when an implant is used the relocated fat serves as a barrier between the implant itself and the breast skin when thinning and rippling of the implant occurs over time. My radiation exposure history prevented me from being a candidate for the more natural procedure and thus limited me to the use of implants. I don’t know which procedure is more preferable, but I know more and more women are choosing to avoid implants if possible.

Ok, so there you have completed your semester in Impostor Reconstruction 101. This information will be covered on your midterm exams. Study up! Extra points to Rachael for sharing her pictures with us so we could give you a mental picture if the process. Be praying for her as she is right in the middle of her journey as a breast cancer survivor and balancing life as a wife and mother of young kids. She's an advocate for women navigating breast cancer and is a champ in this process!

You can check back later in the week and we may have more pictures posted.

(Note: The thoughts expressed on this page are my own, so blame me alone if you take issue with anything above. I do know she shares our loathing of drains, but don’t want to misrepresent her.)


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