Posted by: Kate | April 25, 2010

To Hide or Not to Hide?

My abdomen is really pretty gruesome, at this point. I will not post, or even take, photos.

I have about a nine-inch scar running down my sternum, a thick, dark pink line edged with similarly-colored dots. The surgery I had in that spot was officially a Total Abdominal Hysterectomy, but it was much more invasive, with a considerably larger area, than a typical TAH because of the need to seek out and remove any necrotic tissue, before the necrotizing fasciitis could spread. The first VAC sponge was the size of a football, perhaps a bit larger, and it allowed for quick healing so that I still have a jalapeño-sized sponge below my navel, but the upper area was closed and held in place by a long row of staples, now removed and leaving behind its dots-and-line signature.

I’m uneven, too, mostly because of the VAC. It stands for “Vacuum Assisted Closure,” so it makes sense: the wound is off-center, lying more to the right of my belly button, so when the VAC is in place and turned on, it is literally vacuuming itself into place, sucking down into my body. When it’s not there, I still have a depression on the right side, but nowhere near as pronounced. They tell me I won’t have much scar tissue there once all is said and done; I have my doubts, considering the size of the wound. Sure, a jalapeño is smaller than a football, but that’s still a hell of a lot bigger than any other wound I’ve ever had in that area.

Then, over above my right hip, I have another nasty-looking wound, once a cantaloupe-sized entrance site to my inner bits and now apparently (I can’t bend properly to see it, and frankly don’t want to), as of the past week, closed to the public and just bearing the same unpleasant-but-comprehensible surface – though a centimeter or more down into the surface, so that you can see my body in layers, like looking at the different-colored rock layers in the walls of a canyon. Perhaps less geologically significant, and certainly more bizarre to me, but still, similar. Much, much more painful.

The VAC sponges are black, and covered with roughly six-inch-square areas of clear tape. Centered over each sponge is a circular plastic vacuum… thing (where the sucking happens, I don’t know the right word), with a long, clear plastic tube extending from it to a smallish (think small purse) plastic box, which I either wear like a handbag or set down near me, depending on how long I’ll be stationary.

My stomach is still quite distended, much less than it was a month ago and continually shrinking, and I have various other bruises and scars and old tape residue which I haven’t entirely removed because it hurts to scrub at it too long or it’s covered with new tape, etc.

So, you get the picture… and it’s not a pretty one. But at the same time, it’s all explainable, and it’s not terrifying. It’s a series of marks that proves I had skilled doctors and good medical care, and that I continue to be watched and cared for.

My question for you is: would you let your family, your husband and mother and children, see this overly-landmarked bit of personal geography? Or would you keep it covered as much as humanly possible? (I could cover it, except for the tubes and the purselike bit, and do so most of the time.)

I gave this a lot of thought when I was still in the hospital. Just how much did I want my children to see and understand? How much was I willing to risk showing my husband, knowing I had already had multiple procedures which would do nothing but threaten our sex life? Where was that line between trust/openness and concealment/protection?

And I decided, as I typically do in these sort of parental conundra, to err on the side of the straightforward, to share rather than to hide. Now, I didn’t walk in the door and flash my bits the moment I got home; first I explained the machine they could see, then I showed just one part of one of the sponges, and so on, and now they’re quite blasé about it all. Likewise Willem; even beyond, he tries hard to convince me that he remains attracted to me and will be no matter what… bless his heart, I want badly to believe him but I’m grossed out by my appearance, so at this point it’s very hard for me to imagine anyone else feeling otherwise. (As a side note, several people have asked: yes, I’m very much considering, even planning, on attending therapy, just as soon as the logistics of it become reasonable. Soon, I think, once the VAC is removed and I’ve been granted restored driving privileges and a handicapped parking permit. Because I know quite well that there are things I need help working through; I might be able to do so on my own but it will be quicker and healthier to reach for help from the start.)

So, really, because I’m curious: what would you have done? God forbid you experience a similar situation, but if you were to come home with an unarguably shocking and potentially scary set of wounds and scars on a part of your body that could be hidden but could also be displayed without breaking laws, how would you handle it?

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Responses

  1. Well, you know I’ve been through several traumatizing medical scenarios since you and I “met”, so I’m pretty sure we also agree on this one. My kids have seen my scars, have asked questions (well, Katy anyway…Jamie just pokes at them), and have helped with recovery. Katy is very knowledgeable about my TAH, both laporoscapies, and my gallbladder surgery.

    I always err on the side of grossed out — I’d rather have them know than be surprised.

  2. BTW, please do not let doctors try to convince you to go on estrogen. Your body will continue to make estrogen, and it’s in so much of the food we eat, that going on a supplement will increase your risk of breast cancer and not prevent the hot flashes. Your best bet is a bio-identical progesterone — the same type I took while pg with both kids and take now (Prometrium).

    Lemme know when you’re ready to talk about it, and we can chat.

  3. never been in those exact shoes, but I have always let my daughter from about the age of 8 or so be exposed to life’s grit. We talk about it a lot, and I try to prepare her for “grit” before she sees, and ask if she feels she’s “up to it”. I find that it’s not life’s “grit” that is shocking and painful, but the vacuum that kids (and adults!) fill with their own thoughts around that “grit”. I think my daughter is stronger for having been allowed to build her strength by being in life as it comes.

    As to the husband, and the attraction…my dh has always been my ‘nurse’ in my medical situations. And he’s just as attracted to me as he was when we were in our 20’s. If your W. is anything like my R., it’s the stuff inside the “package” they love and care about. I trust my dh enough to believe that he’ll always see beyond my flaws on the outside (and inside!)

    You’re so smart to be thinking and asking and planning about these things…instead of what so many people would do, which would be to stuff them down in some dark place and not let them fade away in the bright light of the people who love you.

  4. I think the way our loved ones view us has nothing to do with stereotypical measures of beauty or attraction. Changes to our appearance as we age don’t seem to change the image we have of one another, formed in those heady days of falling in love. Old people attest to that all the time.

    So how about a few ugly scars? How about other disfiguring changes we hear about in the news – burns victims, people in car accidents?

    I think it’s the same. We have a love and an attraction to the person, and mostly we only look into each others eyes. Sex with wrinkles and extra weight doesn’t look much different when you’re in the middle of it, so I would suspect other things can change physically without much notice their either.

    And our kids? Does it matter one iota what we look like to them so long as we can hug them, or kiss them, or listen to their dreams?

    I would have been open with the scars and the changes. But then, I also know that my kids are too curious not to want to see, and know what it was all about. As for my husband, he’s the kind of man I would share anything with.

  5. At our house, they are all Wiz’s scars. He knows he has them and we talk about them (he has scars on his skull, bone marrow biopsies, and hernia surgery). They are just part of him. He knows he’s had surgeries, but he talks about them and it seems to help him deal with all the trauma he’s had.

    How this will affect him later I have no idea. But hopefully anyone who loves him will just deal with it. I would think it would be the same for you and those who love you.

  6. I know all about the would vacs(which the names I learned for that contraption). I know you dislike them because it’s painful but they are a wonder of science when it comes to healing and minimizing scar size. We practiced on grapefruit and I thought it was a totally cool invention considering advances in wound healing.

    Sweetpea, those scars are badges of survival. They represent your will to live, your desire to stay here with your family and friends. So while I wouldn’t be parading naked or whipping off clothes to show folks I would also be honest with my children and let them see if they wanted to. My mom…hmmmmm, don’t know as she’s gone. My mom did not deal well when Brennan got ill etc so maybe not her.

    Attraction is in the mind. I completely believe what Willem says and things will continue to get better physically, aka scars etc. My spouse called my weight gain and my body disgusting. I know that if he feels that way there is nothing I can do to change his mind. He’s also gained weight as he’s aged and to be blunt he’s a real ass sometimes. I had thought he loved me for me but that was my mistake. Your spouse is supportive, loving, flexible, and just plain awesome. Believe what he tells you. I would.

    Love you Kate and I am so happy you survived the physical mismanagement and trauma. You are so very strong. People tell me I am strong as well. Let’s just say like recognizes like.

  7. Kate,

    Of course Willem is still attracted to you. You are probably not physically attractive now, but you are still so many other things. You are still intelligent, caring and witty, not to mention the mother of his 3 children. Also, you will heal and become physically attractive once again. Until then, be glad that you have so much to fall back on. A lot of people don’t…

    Love you, Kate. You rock!

    Molly

  8. Show them! Wear those scars like a badge of honor. They are nothing to be ashamed of!!! Dammit you’re alive! Willem doesn’t give a crap what your scars look like……….he’s just happy you’re here!!! Your kids will be proud of you, realize how strong you are. They’ll probably even be bragging to their friends it……..”dude, my Mom has a scar THIS big”!!

    Being a child of an unhealthy parent for 20 + years, I’ve seen the scars. I’ve seen the staples, the stitches, the bruises, the pain. It’ll just make everyone appreciate the big picture even more. You’re here and on the road to recovery. The scars will heal, and fade but the love will only grow.

  9. “Scars are proof of character building experiences.” I’m sure W is, (like most real men are to their wives), attracted to you, the person, not your body.

  10. In our house we share and show them. Derek, being a kidney transplant recipient at 3 years old has a r”road map” very similar to your tummy I am sure (especially if you think back to the botched G-tube & colon repair and bowel blockage surgeries flanking the transplant)
    With my surgeries we shared them and with Derek we totally shared them with his sister. Steve recently had the pins put into his finger and we let the kids watching the cleaning and bandaging of them as well (granted Steve’s stuff is nowhere near the degree of what you have now.) I think hiding it signifies shame and there is nothing shameful about what has happened.
    You are a beautiful person Kate. With all that is going on you may not feel it right now but as the VAC disappears and the sticky bits rinse away you will see the beautiful woman you once knew in the mirror-she will be different but just as gorgeous as ever. {{{HUGS}}}

  11. Hey Hon,
    I tend to be along the same lines as you.. I would rather tell the truth in a non-scary way, then leave it floating around and at risk of them getting misinformation. On the Husband front, I have had this worry a lot, and while love making after a hysterectomy requires a little bit of patience and and usually a couple of tmi aids 🙂 but it is really amazing they way that men can compartmentalize, that Wes could watch all the treatments I’ve endured and be interested in me like that surprises me too sometime, but most of the time I am just grateful. ❤ fwiw, if he tells you he loves you and is attracted to you, try to believe him, you've got a good one there, and I think he truly means it every time he says it.

  12. When I had my VAC, Jerry was there for the first sponge placement, and held my hand through 2 of them that happened at home. We let the girls know what was happening and they saw the whole sponge tape tubes thing, but never off of my body. DJ was still too little to understand any of it, so he didn’t get to see any of it.

  13. I wouldn’t keep the scars a secret. The scars aren’t bad or shameful, they are remenents of what was done to save your life. Kids have an amazing capacity to understand and accept truth. xox

  14. This one I can answer. I kept them covered unless someone expressed an interest in seeing, in which case I told them exactly what to expect and then let them see. I didn’t show my kids, because the oldest was just barely five and it didn’t seem appropriate. My then-husband had no problem with the wounds, but after our divorce I was pretty self-conscious the first time my second husband actually saw my scars. He just laughed at me because he’s had two organ transplants and his scars are much more impressive, but I think it’s different for women. With men, scars are like a badge of honor, gross stuff is cool, and it’s okay for them to be all rugged-like. With women we feel like our bodies should be pretty, smooth, texturally and visually pleasing. When I had my hysterectomy (after the great MRSA debacles, for unrelated reasons) and subsequently developed peritonitis (because yeah, apparently I am cursed and should avoid surgery at all costs) I ended up with a lot of scars (they originally attempted a DaVinci-assisted hysterectomy, then had to convert to a more open procedure, than went BACK in to clean out the infection from the peritonitis and place JP drains, etc.) and my oldest son took it very, very hard that I had scars all over my belly. He asks me a lot about whether they’re gone yet (no, although it’s been almost a year and they look a lot better) and when I asked him why it bothered him he said he didn’t like to think of me hurting like that. I assured him that I was “asleep” from medicine when I got the scars, and reminded him that when he had a minor procedure he didn’t feel any of the cutting for that same reason and it seemed to help him feel a little better about the whole thing.
    Just keep reminding yourself that what you see now is NOT what you’ll ultimately end up with. With my biggest, scariest wound, that nurses came daily for several months to pack, unpack, clean and otherwise poke at, a six-inch open cavern ultimately (after healing from the bottom up) ended up a one-inch scar that lost its dented appearance and is now a white line. There’s a very slight dent in the flesh, but you have to know it’s there to really see it. My major medical scenario that caused the horrible wounds was also the result of doctors ignoring me when I asked for help, dismissing me because I was a chronic pain patient and accusing me of being unduly concerned about something that I knew wasn’t right. It adds a layer to the feelings of having a disfiguring scar, knowing that it’s there as a result of someone else’s negligence and/or biases, and all I can say is that four years later I hardly think about it. I still have some lasting affects from the horrible sepsis and the drugs to rid me of it, but I don’t dwell on them and sometimes forget why I have them “in the moment.” The anger does fade. It’s not easy, you’ll probably want to examine it in therapy when you feel strong enough, and it takes a long time, but someday this WILL be “history,” I promise. Hang in there; you’re doing great and no one can question your fortitude or mental stability (EVEN YOU!) given what you’ve overcome so far. Bad days will come and you’re absolutely entitled to be overwhelmed by this tremendous situational assault to your wellbeing. But this too shall pass (slow and painful, like a kidney stone).

  15. Take pictures, lots of them. If you don’t feel comfortable having onlookers just yet, then capture it on the camera. You can all look back later on.

  16. Hmmm…That’s an interesting question.

    I would consider myself a private person, though age has worn away some of that as far as the personal-bodily types of privacy. I’m pretty squeemish, so I don’t know how much I would be able to look at. I have to turn away when I get a blood draw; not because of the blood aspect, but it icks me out to see a needle poking inside my body. I would most likely keep things covered, just because I wouldn’t want to see them. Not because of embarrassment, but that ick factor. I would imagine that my husband would see things, and my daughter could if she wanted to. As far as the scars, I think I would treat them as any other part of my body that I’m not thrilled about. As I’ve gotten older, I’ve become more accepting of those parts and I won’t go as far to hide them as I might have when I was young.

    I love, Kate, that you continue to challenge me to think about life and myself. Thank you.

  17. I believe that the truth, whether you see it or hear it, is always the best policy. Chances are sometime in the future they will catch a glimpse anyway, so it will be better that you were up front with them from the start. My kids have seen my reduction scars which, while not really comparable to yours, are somewhat jarring at first glance. They talk about them in a very matter of fact way, they ask if they hurt, they wonder if I will always have them, but they’re not scared. Showing Brendan for the first time, a day or two post surgery, was terrifying. But as someone above me said, men love/adore their wives for much more than their bodies. Two years later I don”t think he even notices them.

    I firmly believe that you did the right thing…kids (and husbands) are able to handle so much more than we give them credit for. And just think, they will always know just how strong their mother is, and how hard she fought to stay in this life to be with them. That’s no small thing.

  18. I wish that I had taken pictures of my stomach after I had my gallbladder removed. It looked like some one sucker punched me a thousand times. My scars are small but I showed them to my son and told him that mommy has an owie that is getting better. I showed him the tape that held the wound together and said that it was helping my owie. Something along that line would be appropriate. My son was three at the time. I am not a show off person (too much cellulite and flab on my tummy but after surgery I showed off my badge of courage. Not to strangers but to family and it helped them grasp what I had been through and how because of how my stomach looked that I should be taking it slow and they needed to take up some of the slack.

  19. I don’t know you, but came upon your blog months ago from another link and have enjoyed it. I wish you well in your recovery.

    A few years back I had a grapefruit size tumor (turned out to be benign) removed, and I have a scar that runs completely across my abdomen following the bottom edge of my rib cage. I was gutted like a fish! I have to say, I was so proud to have survived the surgery and my little scare, that I had no hesitation to show anyone my scar. People were impressed!

    Now it just feels like a part of me. It would be weird not to have it. And as someone who is not married, but who has had relationships since, it hasn’t made one iota of difference.

    I work in the medical social work, and I could never figure out why so many older women who have had mastectomies want to show their scar off. Now I understand. I have survived a gritty part of life! Hear me roar! It feels like a sign of strength.

    The hardest part after surgery was having the patience to get my energy back. I was dragging for months. The littlest thing would wear me out, and my memory felt like swiss cheese. Be patient with yourself. You are a survivor, and you have made it through MAJOR medical issues. Take the time you need to heal. I’m sure you family and friends who love you are just so grateful to have you still here with them! Take care.

    Oh, and one thing that helped me, since my guts were basically taken out and put back in, was to wear a girdle for awhile. I found myself always holding on to my abdomen to feel better, and found that a girdle did the same thing and made me feel more secure.

  20. I didn’t let Max see my scar. The problem was that it needed air time when it was infected, so I had to clean it out and lie on my back with the ceiling fan on, and that was when I read to Max at night. I still don’t let him see it, but it’s because of his individual nature…I know it would terrify him to think of a knife cutting into my stomach, and I know he would have nightmares about it. He’s that kind of kid.

    Hubby saw my scar when the hole had opened up because I made him look (I couldn’t bed over that far either). In my mind, we started it together when I conceived, so why shouldn’t he see and understand that he was 50% responsible for what happened to me? And if it turned him off, then that’s HIS problem, not mine…it would mean he wasn’t accepting of the fact that we all change as life moves through us, and some of us have a rougher ride. Truth to tell, I’m more ashamed of my podgy belly right now than that incision…

    Personally, I think scars are beautiful and I find them fascinating to study. I wouldn’t be squicked out by yours! And actually, there will come a time where you will shake off your wrappings, step into the sun, and feel damn hell ass proud of that battle scar. You might even carry round little pamphlets saying, “On this site (X) number of years ago, my body waged a mighty battle against infection and won…for more information, please stop at the kiosk for an audio guide available in many languages…” 😉


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