The circus may be gone, but the big top remainsPosted: May 11, 2012 Filed under: breast cancer, cancer fatigue, infection | Tags: DIEP breast reconstruction, life after breast reconstruction, mycobacterium fortuitum, nosocomial infection, post-mastectomy infection, psychological effects of breast cancer, the Big Dig 20 Comments
Saw Surgeon #2 last week about the next step in revising The Big Dig. Didn’t want to talk about it or blog about it at the time. I’m not sure why, but I suspect it has to do with Surgeon #2’s comment about me having “been to hell and back.”
Part of me thinks it should be very gratifying to hear Surgeon #2 say that. After all, I respect her immensely, and it’s quite validating to hear someone I think highly of say that I made it through a seriously trying time, and that I made it with flying colors. If there were a report card for cancer/infection/surgery progress, I think I’d have straight A’s.
No such report card exists, however, and a 4.0 in this particular course-load is meaningless. There is no honor roll in the ranks of survivors. Instead of a gold star, I have some big-time scars across my chest and belly. I’ve gained a few hard-won wrinkles etched in my furrowed brow, too, from the worry that accompanies a cancer diagnosis, a post-mastectomy infection, 267 days of oral antibiotics, and major surgery followed by not one, not two, but multiple revisions. There’s no end in sight to this circus. The fairgrounds are quiet, but the circus tent remains. The bearded lady has gone home, and the trapeze artists have ambled along, too. The wild animals are safely ensconced in their cages, and the carnival rides are dormant. The circus, however, lives on. It seems there is no end to the drama and three-ring craziness that is life after breast cancer. I hold out hope that at some point the circus will vanish in the night, and I will awake to find sawdust, peanut shells, and the faint smell of adrenaline and cotton candy. But alas, the big top remains.
I saw Surgeon #2 last week to get her opinion on the next step on this cancer “journey.” Like a traveling circus steaming toward the next town, the cancer “journey” chugs along. I sought Surgeon #2’s expert opinion on the next phase of this “journey.” After The Big Dig and subsequent revisions to perfect what is essentially an imperfect canvas, I needed to hear her say “do this” or “don’t do that.” I needed to know whether there’s any point to pursuing yet another tweak to my restored chest.
Surgeon #2 was her usual cheery, to-the-point self. She says I’m “almost there” in the relentless pursuit of normalcy — at least on the physical side — after breast cancer and reconstruction. That’s the tactful way of saying “We can do a little more, but it’s never going to be perfect so we’re getting close to the time in which you start to accept it.”
I don’t want to accept it.
I’m still hanging onto the myth — albeit cruel and deceptive — that one can have nice boobs again after cancer. Public Service Announcement #852 from this little blog: If you hear someone say, “Bummer about the breast cancer, but at least you get new boobs,” be aware: the new boobs may not be something you actually want.
I’m still not ready to accept that ugly truth.
Surgeon #2 concluded my consultation with a little look-see at an 8 1/2 x 11 inch photo of myself pre-reconstruction. I don’t remember posing for that picture, as there have been several photo shoots associated with this cancer “journey,” but there it was, on the inside cover of my file. Surgeon #2 flashed that full-sized photo of me, with one tidy mastectomy scar on the left and one not-so-tidy scar on the right. The right side, a mess of multiple scars and tissue excisions necessitated by the nosocomial infection. I hadn’t seen or thought about that scene in many moons. I recognized the train wreck on what was formerly known as my right breast. I recognized the God-awful blue paper panties required for plastic surgery photos. I recognized my former belly button, so normal and non-Frankenstein-looking. I recognized the flabby belly that I was required to acquire so that the DIEP surgery — my only reconstruction option — could occur. That belly was flabby, but it was unblemished and absent was the 17-inch incision from hip to hip that has mellowed but will forever be a stark reminder of what the king’s horses and the king’s men did in an effort to put Humpty Dumpty back together again.
While I hadn’t seen that photo in nearly two years, I recognized every aspect of it. However, when Surgeon #2 said, “You’ve been to hell and back,” I couldn’t conjure up the specifics I expected to feel about that dark period in my cancer history. In fact, hearing her say “You’ve been to hell and back” was startling. I didn’t expect it. I didn’t know how to react to it. And days later, I still don’t know how to react to it.
I suppose I should have felt some pride and/or satisfaction at having endured that trip down the “If anything can go wrong, it will” scenario. Perhaps I should have felt a sense of accomplishment at having survived that arduous trip down the rabbit hole. I guess I should have felt happiness at having come out on the other side of such a hellish situation. But I didn’t.
Instead, I felt as if I were watching myself in a movie. I remember being there, of course, and I remember that all that happened to me. But I can’t conjure up the specific feel of the experience. I can’t visualize the ins and outs of that particular “journey.” I see myself, my physical body, in that full-size, color photo (which is not at all flattering, by the way), but it doesn’t seem like me. I see that former body through a myopic lens. The rational side of my brain knows it did indeed happen to me, but the protective side of my brain has shielded me from calling it up, in all its ugliness. Like the flash of lightning in the night sky of a summer storm, or the sharp but fleeting heat of a jalapeno pepper on the tongue, I know it’s there but once it’s gone it’s gone. For that I should be grateful.
But I’m not grateful.
And really mad.
Maybe it’s too soon to feel triumph over the wily infection that wreaked untold havoc on my weary body. Perhaps the time is not right to celebrate how far I’ve come. Maybe I’m simply not one to say, “That was rough, but I got through it.” Apparently it’s a long way from beginning to end, if there ever is an end, and I’m not there yet. While it’s been almost exactly two years since I bid adieu to my cancer-riddled breasts, that’s not enough time to process the enormity of all that’s transpired over the last 728 days. If it were a linear path from diagnosis to mastectomy to psychological recovery, I might be in a position to expect some change, some healing, some progress to have occurred. But I was busy processing that nasty infection instead of dealing with the weight of cancer at age 40, so the change, the healing, the progress remains at a standstill.
The big top remains.
glad you made it back! May the evil shadow of that cursed disease fade away.
Doesn’t sound like a very fun circus to me. You remain in my thoughts! You are beautiful.
Thank you, thank you, thank you, my dear. I’m going in next week for yet another revision and you so eloquently said what I’m feeling. I am so grateful to have found your blog, and grateful to find one person who has walked a path so very similar to mine. Even though there are so many many women who have breast cancer, and EVERY case sucks, there are so many different paths of “the journey” (those two words sounds sort of b.s to me.– a pretty cover up of something crappy, like a tampon commercial). But your “journey” and mine are very close. I’m having a hard time this weekend, missing my friend who died of BC a few months before I was diagnosed. She died 2 years ago in May and left behind two daughters, the youngest one the same age as my son. I feel guilty that I’m still here and she’s not, and her daughters don’t have their mom while I’ve gotten to spend another year with my son. My friend made it 5 years past her initial diagnosis, and she didn’t have the mastectomy, but had chemo. Of course, you and I don’t know if we’ll be here in 5 years either. Hopefully we will, and we will get 5 or more years with our kids, which is why I fought, and probably why you did too. But I’m always torn– glad I have this Mother’s Day with my son, but sad and mad too about what I’ve been through, and lost. And scared that if I do live 5 years it will be full of more pain and ugliness and more surgery. Maybe scientists and doctors will come up with some alternative, something even better than DIEP flaps or implants, and an amazing laser that can erase all the scars on our bodies and maybe even the ones on our souls. I hope so.”There is one thing stronger than fear. Hope,” I just saw the Hunger Games movie with a bunch of girlfriends and we all loved that quote. I’ll be thinking of you on Mother’s Day too. With sadness, empathy…and hope.
You speak truth to power Pink. I cannot tell you how your spirit infuses me to keep with this. Your weiting says, “Please, can we stop acting like it is all hunky dory and recognize that this living through what used to be dying is no easy task.” Every time you wind up and toss one of these, it makes me feel empowered. Thank you.
Love what you wrote too, Bruce Kramer. Excellent phrasing of truth.
You and your blog are an inspiration to me and my own cancer journey. Sometimes you will have days of normalcy where you just forget it ever happened. I had four days of that last weekend in New York City. They were the best four days in the past two years. I’m wishing you get some too.
That’s you companion PTSD keeping you from feeling the experience. I hate to say it, but there’s no getting “back” to normal. Hopefully there will soon be a new normal, a life post-cancer that is not defined by cancer. Someday the circus will be gone, just a faded poster on a telephone pole to prove it was once in town. Oh, and we clowns will always be with you.
Powerful writing about living life on life’s terms. Thank you Nancy!
you are so damn good at this! All of this.
You can’t start the psychological journey when you are still in crisis, and every new dig is s crisis, it’s like you play the tape, and keep hitting rewind at various intervels…to the beginning. The elephant keeps running back in and circling inside the tent. It will come, some day, the calliope will be silent, and you can start to think.
I’m really proud of you for muscling your way through Hell and back with determination and wit, but not an ounce of self-pity. I’m really proud of you for continuing to inspire others with your words. I’m really proud of you for being a model of strength for your own children.
You’re a true hero.
Be sad! Be MAD! You have to go through this in order to get to the other side. Otherwise you’re just in denial and that’s like going backwards! I’m glad you put your finger on that part of it, especially when you were having trouble trying to figure out what it was you were feeling….. This is all part of the grieving process–and this process doesn’t always follow a particular order, which is even more maddening because these emotions come back just when you think you’ve gotten past them!!! And even when you’ve gotten to your “new normal” and the stage of “acceptance,” there will be times when sadness and anger “rear their ugly heads,” but it will be less and less of that and more and more of “normal.” And anger isn’t an emotion but a symptom–usually a symptom of loss of control and for someone who usually has stuff under control, this can be even more maddening!
And there’s those of us like me who have been observers of your “journey” that may be oblivious to some of these things that are going on inside of you. My understanding of your situation can only relate so much so please give me a big ol’ slap if you need to knock some sense into me! Or just put your finger to your lips and shush me or shout “hold on just ONE minute–you DON’T understand!!” And you would be correct. I don’t, I can’t. But I try. And, like Trevor, Ed and others who care so much about you, I will be there, painting on my clown face WITH you (or insecurely undressing in a huge tent with real models)! And it is my honor and privilege to be there WITH you even though I can’t go through this FOR you. I wish I could. You have taught me so much about perseverance, perspective, hope, honesty…..laughter, love, loyalty, humility, self control, anger, sadness and the sheer lack of good-fitting bras that are available to those who have had breast reconstruction. I sure hope they call you to consult on that!
On another note, how about we change our perspectives on our belly buttons? Wanna get tattoos around them? Wonder how certain surgeons would like that!!??? It’s perspective, right?? right…. sigh….
Well said Amy. With versus for captures the essence of the situation. I often feel that words come off as hollow in the face of pain or loss. Thanks for finding words that stand up to the weight of emotion and communicate what we as friends of nancy feel.
Keep writing, Nancy. You echo my thoughts in so many ways. While I never chose reconstruction (at least to date), I have thought about it and wondered what it would be like and if my body would be able to tolerate it. Vicariously I learn what it is like through posts by my blogging sisters. We do what our hearts tell us to do. Keep writing. xx
Nancy, you have every right to be angry,sad, Mad and to pour it all out. You can even dwell in the anger for awhile.Why not. You have been dealt a tough hand and you have been through hell and it sucks and it calls for anger and sadness as I said pour it out. You don’t live in the anger and sadness and that makes the difference . I’m am so glad I know you and you are such a great friend to my son even with all you’ve had to deal with. I thank you. Looking forward to you all being here at beach and don’t think you can’t be angry and sad if that’s how you feel. I can do that real well and then will drink the champagne on the shore and listen to the waves and it may be better for a brief moment. Love you
The 4.0 isn’t meaningless. It’s everything! You’re still here. You’ve survived this nightmare. While I haven’t had the terrible infections, etc you have, I have had 10 breast cancer surgeries and long ago I gave up the hope of having beautiful breasts again. Every time someone said to me, “At least you got a boob job,” I was tempted to rip open my shirt and say, “You mean like these road maps of scars and mismatched nipples?”
Now, I feel somewhat differently. I’ve come to the place of acceptance, but that doesn’t mean I still don’t want beautiful breasts. More than anything, I now want Dr. Susan Love and her researchers to discover the cause of breast cancer and find a way to prevent it. Yes, a cure would be miraculous, but that would mean women like us would still have to suffer through the devastation of being diagnosed. Like polio, like cervical cancer, I want a vaccine so no one else has to go to Hell and back.
Amen, Brenda! The cure will be too late for us, and especially too late for our sisters (and mothers, and friends) who’ve already died from the disease, but oh what a beautiful day if this disease is cured and doesn’t maim or kill anyone else and our daughters, nieces, etc. don’t have to face it.
Besides the “boob job” comment, there’s also the “You get a tummy tuck!” I got from some people, including my oncologist, regarding my failed DIEP. As Nancy mentioned, it leaves a huge scar hip to hip and a weird belly button. And I didn’t have that much fat to begin with, could have just done some excercising. And could have just had breast augmentation if I had wanted better boobs. I actually liked the ones I had, until they tried to kill me. You probably did too. 😉 Thanks for your honesty about “acceptance”; I’m not there yet, but haven’t had as many surgeries as you, and though I thank the doctors for what they’ve salvaged, I know in the back of my mind it won’t–can’t– be what I want. I want it never to have happened.
I’m wondering if there is a blog for mastectomy patients that helps women tell others what is coming down the road– like, could my implants fall down around my stomach? Sounds funny, but according to my PT specialist it has happened. Maybe Dr. Love has a Book II. Her first one was a lifesaver for me.
I have to say I’m glad I found your blog. I’m at the beginning of my “journey” and appreciate the comment about moving beyond fear and sadness to being mad. Mad is a good thing for me – it shows me that my “fight” is back and “flight” is receeding. My lumpectomies have been done and it’s a slow process, living on an island in the middle of the pacific, to move through the consultations with limited resources. There are complications with lumpectomies as well. Not to the degree that surgery and reconstruction have, I’m sure. The reality is, the time has been well spent in healing and adjusting to the next decisions I’ll have to make. I’ve watched some of my friends who have gone through this be herded into a set treatment system that was not always appropriate for their circumstances. Someone commented on the loss of control as one of the adjustments we all have had to make. Loss of control over having the disease of breast cancer – Yes; how we choose to treat it -No. I have to make the final decision on chemo, radiation, hormone therapy or combination. I am a kidney transplant recipient, 10 years ago, and have the usual meds that follow transplant surgery and they don’t play well with other meds. For me, at this moment, chemo is a shot gun approach that hits everything in sight. Radiation makes complete sense to me and hormone based therapy is a more focused approach to breast cancer cells. That seems to be more appropriate to my situation and I realize my decision may be wrong and we’ll go through this again in the future. As they say, “One day at a time”. Getting to vent somewhere is important, and your blog and the resulting comments promote that. Thank you for sharing your story.
Jan – cancer sucks. Cancer sucks ass. I’m so sorry that you have to endure this same BS that Nancy and so many others have been subjected to. But I hope your treatments work for you and I wish you good health. I wish I had better words of wisdom for you, but all I’ve got is that I’m rooting for you.
Blessings to you, Jan/Sister. And Trevor, what a hoot– I don’t know if you are Nancy’s husband. But my husband came up with what I think is the best “stock” answer during my cancer, and it sort of mimics yours– and I tell other people it’s the best thing to say when you haven’t traveled the same road because it’s simple but true: “I’m sorry, and this sucks”.
Nancy, I don’t even know how to begin to say anything here. A big yup of agreement with Eddie. And I’m glad you have friends like Amy.
Maybe because I’m a PT & have treated so many people after surgeries of all sorts — and seen every sort of post-op hell — my illusions were already pretty much destroyed on that score, so I did not choose to go down the recon road.The rest of the treatment road was debilitating enough. One of the surgeons I know always says, there is no such thing as ‘minor’ surgery, meaning that anytime a surgeon gets in there & mucks about, anything and sometimes everything can go wrong.
I would say that you have every right to feel traumatized. Because your recon experience has been a train wreck. No two ways about it. The only good thing to be said is that the train didn’t crash hard enough to kill you. So, you’re still here. Thank goodness for that. No thanks to the wonders of healthcare though, she said snarkily.
I do sometimes wonder what happened to that backbone of the Hippocratic Oath, ‘First, do no harm.’
I suppose it’s helped that I’ve always thought symmetry was overrated.