Monday, July 16, 2012

GIVING UP THE GHOST

The last I wrote of my journey with reconstruction (see Delayed Healing), I was trying in vain to save my right tissue expander. Allow me to catch y'all up on my physical progress since then. I'm including photos to help anyone out there who may be struggling with delayed healing issues. First, let's backtrack to a year ago.


July 6, 2011
July 2011 My original right incision never healed closed after my mastectomy on February 3, 2011. After repeated surgical interventions to debride and re-suture and heal it, a pinhole developed through which fluid seeped at a consistent pace. The pinhole grew from a tiny dot to the size of a large pinhead (see photo). Because it is an actual hole and not just yellow/green tissue (see Delayed Healing for pictures of that), my plastic surgeon, Dr. C., and I decide it is time for the right tissue expander to finally come out. I make peace with this decision.


July 6, 2011 In the hospital under anesthesia, Dr. C. cuts into the healed portion of my old mastectomy scar, excises the expander and scrapes away the scar tissue that has built up over the past five months. This tissue will be sent to the lab to make sure I don't have an undetected infection as well as to check for cancer cells. 

This is my fourth surgery on this side (not counting in-office stitching). The fourth time I undergo general anesthesia in as many months. The fourth time I try in vain to heal this wound. (But who's counting. Oh right. Me.)

I wake up and don't feel nauseous (always a sign of operational success!) and am sent home a few hours later. With another damn drain in a different place (which means another awful scar). I'm wrapped tight as a mummy in an Ace bandage and not allowed to shower. Which is alright by me, because I'm dreading having to look at my mutilated self.


July 10, 2011
Despite the internal and external trauma of delayed healing and the subsequent removal of my tissue expander and scar tissue, the AlloDerm that Dr. C. placed in righty during my mastectomy is holding up just fine. That's the good news. But I'm now left with a crescent-shaped mound resting above my inframammary fold line, and a sagging, scarred pile of skin above it. Just call me Uneven Annie.

Time passes. My incision heals. For. The. First. Time. EVER. (I guess my body really didn't like that right expander.) My biggest challenge now? Disguising the fact that I'm now a one-boobed wonder when I leave the house.



The easiest way around this is to wear a structured bra that clasps in front. (This workout bra is by Danskin; I bought it at Walmart.) I don't fill out the cups, but that doesn't matter; when I wear this baby, I look "normal" in clothes. Only when hugging me would you notice a dent. (So I don't hug too many people.) The plunge design of this bra allows me to finally wear regular tops. (I've been living for months in surgical vests 24/7... they provide compression for the fluid build-up and a way for my bandages to stay put. I will not miss them.) What a relief to leave button-down shirts on the hanger.


November 30, 2011
I also begin physical therapy twice a week to regain the range of motion on my very weak right side. And I'm beyond relieved to hear neither infection nor cancer is found in my scar tissue.

December 1, 2011 One week before my one-year cancerversary (see that post here), I have my fifth surgery. Dr. C. inserts a new right tissue expander and fills it to 200 ccs (rather than the original 350 ccs like my other side). For the first 25 days, all goes swimmingly. My incision looks to be healing. I'm back in my surgical vest and recovering while also preparing for Christmas. But I overdo it, eagerly handing out gifts from beneath the tree I also helped decorate. What was I thinking? I notice a tiny spot of yellow on my bandage that night.


January 5, 2012
December 28, 2011 I notice a larger yellow spot on my gauze pad this morning. Here's the weird thing: The spot isn't on my fresh incision line. It's along my OLD incision line — an area that wasn't even cut during my last surgery! Truly, this is my Achilles heel. I feel like I just found out someone or something died: My hope.

Despite all this, and for reasons unknown, the tiny area does not develop into an actual hole like it has so many times in the past. It simply weeps. Kind of the way I do when I stop to think about how long I've been struggling. I use less antibiotic ointment this time around because I read somewhere that too much can inhibit healing. Dr. C. doesn't think this has anything to do with it, but I'm willing to try. Maybe this is why it's not getting bigger?


February 29, 2012
February 2012 Sometimes I have seepage after I shower, so I cover my incision with a big, waterproof bandage. Afterwards, I have to press down on the area above my expander to force out the accumulated serum that continues to build up inside and around my expander. Still, the area continues to improve. (Fat fingers crossed.) A yellow scab forms. I am cautiously optimistic. 

But the feeling is fleeting.


March 5, 2012
March 1, 2012 I shower with my waterproof bandage, and afterwards dab alcohol gingerly around the tiny scab. Lo and behold, the tiny scab comes off. Yippee! This means I'm healed! I quickly grab my magnifying mirror — and to my horror I see there is a tiny black hole instead of fresh tissue. Healed skin never resided behind that scab; it was all just an illusion. 

I almost drop the mirror. Instead, I start to cry. I can't take this anymore. I have been tolerant. I have been compliant. But it's been 13 bloody (in the British sense) months and I'm SO over this physical and metaphorical black hole. Part of me wants to keep denying that I've got a medical problem with no solution. Another part of me is pissed off and ready to take on someone, anyone, by the horns. The rest of me is just tired. Luckily I have an appointment in a few days with Dr. C. He will know what to do!

March 6, 2012 I'm feeling frustrated, confused, impatient — dare I say it: I'm in a mood. My pinhole continues to ooze. I explain the whole thing to Dr. C. He listens. He empathizes. He looks. He presses. He squeezes. Then he shakes his head. I have never seen him this perplexed or down. Then he drops the bombshell: He is not sure what to do with me.

What do you mean, you don't know what to do with me? You're a doctor! I'm doing everything right and this is all very wrong. I say nothing about getting a second opinion, but I'm absolutely thinking it — and he must be a mind-reader because he suggests I get one. (How many doctors do you know who are willing to tell you that? It takes a lot to admit defeat. Or at least profound frustration.) I'm also wondering why he hasn't shared my case with other surgeons and collectively figured this out. Again, he reads my mind: He tells me he has a colleague at UCLA that he wants to discuss my case with. 

I would like both of those things: A second opinion, and you discussing my case with your colleague. There. I said it. And man, it feels good.

Newly energized by anger, I go home and contact a friend who had reconstruction (see my Get This Party Started! post). She gives me the name of her doctor. As I'm about to dial his number, my gut interrupts: Don't call this guy. Why? Because I suspect he's the same surgeon that Dr. C. is going to confer with. I don't make the call. I listen to my gut.

I turn my attention to a woman I know online who is an expert on tissue expanders. In addition to her vast technical knowledge, she keeps a database on leading surgeons (as well as clunkers who should never work on a woman again) in dozens of cities across the U.S. She tirelessly volunteers her time helping breast cancer patients navigate the tricky, murky waters of TE Land. I lay out my tale of woe and ask for a referral or two in my area.

She emails back the same day, but I am unprepared for her reply: "I think you need to give up the ghost on implant-based reconstruction only. There is some reason your body is reacting in this manner and I do not think that current methods of trying to resolve the problem are working now or will work in the future."


   
March 13, 2012
And, just like that, my merry-go-round comes to a screeching halt.

I'm in a funk for three days. Pissed that someone could thwart my hopes to heal with one blunt email. The truth is, I'm unwilling to undergo more drastic surgical measures to "fix" my problem (i.e., a skin graft from my back, or taking fat from my belly to make a boob). I'm stubborn. I've been suffering through this for far too long to just "give up the ghost." But maybe that's exactly what I should do. Give up the ghost of what I want for what I can realistically have. (Like getting cancer wasn't enough of a kick in the mouth! This whole recon thing ain't for the faint of heart.)


March 14, 2012
March 14, 2012 Something amazing and unthinkable has happened overnight. My pinhole is no longer a pinhole. My incision is closed. CLOSED I tell you! I can't believe it. I was religious about taking photos of myself throughout this process; see it for yourself.


Miraculous, right? Guess I had to get good and mad in order for my body to release its need to seep. I was living in limbo land for so long that when I finally stopped crying and feeling sorry for myself, so did my body. And in that moment I took back my control. I was able to let go emotionally. And I began to heal.


March 27, 2012
March 27, 2012 I see Dr. C. again. He is visibly concerned about my plight. (He doesn't yet know that my pinhole has healed. I don't tell him; I want to hear what his colleague had to say first.) I'm sitting in my unopened, button-down shirt. Before he begins, I ask what the other surgeon's name is. (HA! I was right. It is the same surgeon who operated on my friend. The gut never lies!) Dr. C. says both he and the other Dr. C. think I need a Latissimus Dorsi Flap due to my compromised healing. And that's when I open my shirt. I flash him my healed incision and stop him cold in his tracks. (How often do you get to flash an unsuspecting man?) His mouth literally drops open. He is shocked speechless. He knocks on the wall for luck. "This is completely unexpected," are about all the words he can muster.

I no longer want a second opinion. (Kinda already got one.) The seeping and weeping has ended. I am healing. It will take a few more months. I can do this.


July 15, 2012
July 10, 2012 I see Dr. C and it's official: I am completely healed! Here the hitch: During normal reconstruction, saline is injected into tissue expanders over a period of time to stretch the skin and help prepare it for final implant surgery. I have 350 ccs on my left side from my first surgery, and 200 ccs on my right side from my TE reinsertion surgery. This is not ideal because A) they are not very big and B) they are uneven in size. I won't be as big as I was before, but Dr. C. is confident he can make me match (using implants only) on the surgery table, and with a good result. I do not need a skin graft. If I didn't trust this process completely before today, I do now.

Dr. C. does not want to compromise my skin integrity by stretching me further, so I will not be getting fills every couple of weeks like we originally planned. He has, however, decided I can have one fill (more for the experience, I think, than anything else.) Though he's never allowed a patient to do so before, he lets me push the saline through the syringe, giving myself the long-awaited 50 cc fill on each side. (It's only been 17 months. What's my hurry?)
(Illustration courtesy of Breastcancer.org; all reconstruction photos © 2012 The Big C and Me)
On that note, my friends, this blog is officially up-to-date with my real life. It is tracking true to life events. (That's something I've been trying to do since I started writing back in April of 2011.)

When I finally have my exchange-to-implant surgery (didnt I tell you? It's scheduled for September 5, 2012!), my posts will be in real time. 

Woot woot!

EDITED TO ADD: To read what happens after my exchange surgery, click here.








25 comments:

  1. Great post! Do you have contact info for the woman who's an expert on tissue expanders?

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  2. You are so brave to allow yourself to be photographed and what a huge help it will be to those going through the same thing!

    Just so women reading this know...there are other options for reconstruction and they all depend on your treatment plan.

    Can't wait to see the fully inflated you!

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  4. Wow What a bumpy ride!! I'm so glad that it finally healed over, how frustrating that must have been!

    I hope Septemeber comes and goes without any complications!!

    Can't wait for all your updated posts!!

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  5. Oh Renn, I've been MIA, but tears are slipping down reading your last post. We sure do chase that ghost through all of this. My chest is tight just taking in all of the time, hope, lack of hope, striving, letting go...you know the full catastrophe of life. I celebrate with you, will have candles blazing on 9/5, and look forward to a victory hike with you! My Best, Lindsey

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  6. Oh Renn - I am so sorry that you had to endure all this, and soooo glad that (AT LAST!) you have healed!!! I feel extremely lucky to have had a post-mastectomy implant process go smoothly (or at least, as smoothly as these things can go), and can't tell you how much I wish that had been your experience. I will be sending many good vibes and cyberhugs on 5 September, and hope that everything goes exactly as you would hope.

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  7. @Carrie, me too (a complication-free September)!

    @Lindsey: A victory hike is a fab idea. You got it, girlfriend!

    @Liz: Thanks for the well wishes Liz! Some parts of this whole process are easier than others, it is different for each of us. We all have a tale! ;-)

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  8. Wow, Renn. Will be thinking about you and hoping September comes and goes without any complications.
    xo
    yvonne

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  9. These photos bring back a lot of memories, girl. I too had a spot that would not heal, and it was a difficult process. One thing I know for sure: you're stronger than anything cancer can fling at you, and you'll come through every challenge with flying colors. xo

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  10. @Pink: I think these healing difficulties are more common than people think. We sure get a lot flung at us during the course of all of this. Glad you are healed and I look forward to saying the same after my next surgery! ;-)

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  11. When you are all "swapped out" we can do show and tell! I'm right there with you.... and I'm glad you'll be sharing in real time!! I'm ready for new tattoos (really a touch up).... If you go that route, maybe we can gather a posse and hit a tat parlor together. I hear there's a guy in DC doing great 3D looking art work!

    Jokes aside, I'm thrilled you are expanded and I can't believe you got to inject the last batch of saline....

    BIG GIANT HUGS
    AnneMarie
    xoxox

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  12. AnneMarie: Vinnie Meyers in Maryland is the man! Will let you know when I plan to go. (Not until next year.) And yeah I was psyched to do my own fill! (How many people can say that?! LOL!)
    Thanks for swinging by!

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  13. Wow. I am both shocked and impressed. I had my second and last implant operation on 27 March this year - a week after the first disaster. And I thought I was the one with so many complications and delays, but it was done within a year of my mastectomy. I was upset by the final result, but they are settling in and looking better every day and I am now at peace with them. After reading this, I realise I got off lightly with my reconstruction, even though I had many problems (no delayed healing though). In fact my skin was astonishingly resilient even after my 6 weeks of radiation although I had some capsular contracture. It must have been a terrible and very long time and worry for you. Although I had a rough time with chemo, I have to admit that after my mastectomy, I had more anxiety about the reconstruction and its issues than I did about my cancer diagnosis. It is an extremely important process for those who choose it. And it is not about vanity, as those unaffected might think. It becomes a symbol of wholeness, among other things. And the outside appearance of normality means that people never need to know about the cancer - one can begin to forget about it more often and move forward. My surgeon (not my plastic surgeon) was not very sympathetic to reconstruction problems or the importance of reconstruction for those who choose it. My last consultation with him in December last year was devastating in its callousness. That experience has left me with a bigger scar than the scars on my chest. I will be thinking of you on 5 September. You must be SO excited. x

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  14. Cait, thank you so much for taking the time to share your thoughts. You have been through so much! And you hit the nail on the head, especially with regard to reconstruction, when you said "It is an extremely important process for those who choose it. And it is not about vanity, as those unaffected might think. It becomes a symbol of wholeness, among other things. And the outside appearance of normality means that people never need to know about the cancer - one can begin to forget about it more often and move forward." Being stuck in the mire of my complications has stunted my moving on from all this BC crap in ways I'm sure I have yet to recognize.

    I'm sorry you had such a difficult time with your surgeon. I need to go back-read your blog now! Thank you again for your insightful comments. xoxo

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  15. I haven't been able to blog about that last consultation yet. I wanted some distance from it before I wrote it all down. But I will one day!

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  16. @Cait: Ah, that explains why I didn't see it. All in good time! I just love how you explained the emotional importance of recon. Have not read it expressed as succinctly as you did here. Thank you again for sharing!

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  17. WOW Renn, you have really been through a lot. I totally get where you are coming from, I may not have cancer but I was burned in a fire when I was 15 months old and I was not expected to live. My legs took the brunt of the scars. Sometime ago, I accidentally damaged the one leg which has very little skin, it has been 2 years, not healing... specialist after specialist... I am about to give up on it ever healing :(. I am so glad that yours finally healed;)

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  18. Renn, you're almost there....fan-freakin-tastic!!!

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  19. What a fabulous post about reconstruction! I never had it done, but I am fascinated by all the facets of this delicate area. Thanks for putting it all out there. It gives us the courage to do the same. xox

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  20. yes, yes, yes!!! the gut never lies!!!! so glad YOUR dr. C is a good guy. You healed yourself! YOU have tapped into the good stuff. So happy for you! xoxoMOnkeyMEI

    (damn, can't read it!!!)

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  21. @Launna: Sorry you have been dealing with so much for so long. I wish for you good healing. {{{hugs}}}

    @TinaT: Thanks my friend!

    @Jan: Putting it out there can be scary but it's also very freeing. (Who knew?)

    @GreenMonkey: You always make me smile! Thanks!

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  22. Good grief, Renn!! What an ordeal! I'm keeping my fingers, toes, arms, legs, eyes crossed for you that everything keeps going well & that your exchange surgery heals up nicely. Down the line, you know, you might be able to be evened up with lipotransfer. Which is just injections. Hopefully, Dr. C. will be able to even you up with implants, but if not, you are a candidate for that.

    Oh, I can't wait until you are all done!! I'm sure you can't either! We should have an online cyberparty, group conference call on Skype!!!

    xoxo
    Kathi

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  23. Renn,

    Oh my goodness, I had no idea you had been through THIS much. I'm sorry you had to deal with so much for so long. But, I'm glad to hear that September just might be your month. Good luck and thank you for sharing. Like you said, I'm sure these healing issues are not that uncommon. You're helping others by sharing your words and your photos. Hugs to you.

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  24. Renn,
    I just found your blogg and it has given me some hope!
    I have a gene called BRCA1 and decided to have a mastectomy with a reconstruction at the same time.
    I had my first surgery 8th of January and all went really well. But after 2 weeks and stitches got removed my scar started to open again... My doctor put some stitches on again in his office and I went through with hyper Baric oxygen treatment for 3 weeks but my scars completely opened and I had to have an emergency operation were my surgery removed my 430cc implants to replace them with 220cc implants and to re stitch me and we thought that everything was going swimmingly and scar healed quickly. But once the stitches were removed my scars started to open again and the internal desolvebal stitches started to come out! My doctor then realized that my body didn't desolve the stitches and instead pushed them out.. So yet again I needed more stitches put in in my doctors office.. But as one whole got bigger and the stitches ripped and couldn't holed it together I yet again had a large whole on my breast... So I yet again needed another operation on the 9th of April 2013.. And healed well for one week but last week it started to open again and as I'm writing this I yet again have a large whole on my left breast where you can see the implant.. I have an appointment with my doctor again tomorrow and I am not really sure what we can do now! My doctor says he has never had or seen a patient like me in his 37 year old long carrier! - which doesn't really gives me any confidens or help!! I have not through this whole process had any signs of infections and I feel healthy and strong but I am now starting to doubt healing and just want to go back to normal.. I should also add I have a 5 year old son aboys twin boy & girl that are 3 1/3 years old that need their 34 year old active mum back! I am feeling very lost and helpless right now and I hope I will heal soon! If anyone has any recomandations please write to me on my email, rollosara@gmail.com. I am sad to hear your problems to but glad your healing well now and it gives me hope to believe I might make this to! Sara

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