Sunday, January 22, 2012

The End of Reconstruction

Today, I'm reminded of what "Goliath" means.   Though, I don't often recognize milestones along my breast cancer road, I think it's right to say, I've got one.

My reconstruction is officially complete.  Finished, done...That lofty, elusive goal, so unattainable for many breast cancer patients and more than two years in the making for me, has actually been achieved.

The notion of putting breast cancer behind us, or being finished with some aspect of it, is hard to grasp, despite what many well- meaning, non-cancer people like to say.

We can't be done.

Our reality is always another blood test, another scan, another appointment and good news that spins in an instant with a new pain, a rising tumor marker, an unidentified shadow.

To be finished with cancer when treatment ends sounds so good in theory, but it's really a carrot dangling in our faces, a gleaming, brass carousel ring taunting us to grab it and we never quite can.

I consider this as I drive to my tattoo follow up and realize there's no need to see my plastic surgeon after today. There's nothing left to reconstruct.  Perhaps, it is possible to finish something.

Memories of my initial consultation come back to me.  Maybe I shouldn't compare then to now, but I can't help it.  For a happy day, I'm not feeling particularly happy. Obviously, I want to be done with reconstruction, yet liking the finished work doesn't seem enough.  I need to measure how far I've come in some other way.  How else can I leave behind something that's literally taken so much blood, sweat and tears?

It has to matter.

These days I go to my appointments alone, but that first, scary day, I drove in a car I no longer have with my husband at my side.  I had chosen my breast surgeon, but my decision of lumpectomy or bilateral mastectomy was yet to be made.  Surgery still to be scheduled. Extent of my invasive ductal carcinoma, unknown.  I remember the moment my plastic surgeon opened the door, seeing him for the first time, thinking he didn't look anything like his website photo, (in a good way).

I couldn't articulate what I wanted from reconstruction.  I couldn't see past the cancer. Discussing what I liked or didn't like about my breasts was unfathomable.  I needed this man, this stranger, to provide all the answers without asking questions and maybe that was unfair of me, but at that moment, answers were hard to come by.

Somehow, I muddled through a bilateral mastectomy with tissue expanders, a summer of fills followed by implant surgery.  I had to learn revisions were part of the process. Though I was thrilled to have the shape of breasts again along with the softness of implants versus the rock hard feel of expanders, something never felt or looked quite right and my surgeon agreed.


It was frustrating feeling dissatisfied with the results.  Everyone else I knew with reconstruction were all smiles.  What was my problem?  I must be too picky, expect too much.  I should just deal with it.  I lived with an uncomfortable implant for nearly a year.  I just couldn't comprehend another surgery.

Who revises their implants?

Turns out, lots of women.  I realize now, there's nothing wrong, or selfish, in getting it right, which, is what my surgeon said, but accepting that was my issue to bear.

Afterward, nipples and tattoos were procedures keeping me up at night.  The idea of being awake for nipple reconstruction so terrified me, my knees shook as my surgeon measured and marked me with his Sharpie that day, but I endured and he told me everything was ok.

It's impossible to say how I'd react had I known my reconstruction (it's different for everyone) would take well over two years.  I don't know.  I may have opted out of the whole thing, so I'm glad I didn't know.  These days, I feel it was worth it.  It's nice being comfortable, believing it looks good and though none of it's real...It has become me.

As I sat waiting, I thought about not seeing my surgeon again.  Strange, thinking someone with whom I'd shared so much would disappear from my life.  His was the first face I saw after waking from the mastectomy.  His voice said my lymph nodes were clear.  I wasn't the best or most communicative patient at times.  Modesty is a hard trait for me to shed and that didn't help, but I think we reached an understanding and in the end, a great achievement.

Searching the faces sitting around me, I saw lots of people with cancer and many with a long road ahead.  Perhaps, longer than mine.  I knew then, I could say thank you and goodbye.  There were new patients to help, important work to be done and I was ready to give up my seat.

I finished something, a big accomplishment, but that hasn't stopped paranoia from coming around reminding me of my upcoming oncology visit and not to get too happy.  But, that's another post.


Reconstruction questions?  Feel free to ask away.

13 comments:

  1. Stacey,
    You captured what so many of us have, or will, go through. I had many of the same feelings, especially about saying goodbye to my plastic surgeon and his nurses. Since that goodbye, I've taken a girlfriend to her reconstruction surgery, with the same surgeon. Just as he did with me, he said a prayer that God would direct him and see her safely through surgery and recovery. Once again, he reminded me why it was so hard to say goodbye to him.

    XOXOXO,
    Brenda

    ReplyDelete
  2. I am about to have my exchange surgery on February 9th. Saline or silicone is what is keeping me awake and night! Thank you for articulating this. It made me think about the relationship we develop with our surgeons.

    ReplyDelete
  3. Stacey,
    I don't think ANYONE can possibly understand the concept of "reconstruction is a process" in and of itself. I, too hated hated hated my tissue expanders. When they were fully filled early December, they looked like eggplants. Horrendous. And those metal things were super-sensitive. I had to finish my chemo before I could do with swap. Had I known, I would have asked about not finishing up the expansion until necessary. Don't even know if that's possible but I would highly recommend asking that question if anyone finds themselves in a similar situation. Over five months with FULLY filled TE's, not fun.

    I will probably have new tattoo's done this spring when I have my annual check up with the plastic surgeon. They faded a bit over the past 3 1/2 yrs. I may opt for additional fat injections as I'm noticing hollow areas again. I already had them a couple of times.

    I'm very happy I chose to go for "make them look as real as possible" ..... Not for everyone... such a personal choice. Great observations!

    AnneMarie
    xoxoxox

    ReplyDelete
  4. Stacey, thanks for sharing your experience with reconstruction. I did not opt for it and now wonder whether that was the right decision. I'm separated from my husband and wonder who could take me to the hospital and help with my recovery at this point. I'm always curious how it turns out for each person, as the recovery is very individual. I appreciate your honesty on this sensitive topic.
    Jan

    ReplyDelete
  5. Stacey, I'm so glad you've reached this point. You are now ready and able to "give up your seat." That's quite a statement. I'm not quite there yet as I have some revisions in mind down the road, but I've been dragging my feet. I'm not quite ready to deal with that. Your statement in your post saying lots of women do revisions encourages me. Thanks for another great post!

    ReplyDelete
  6. Hi Brenda, it's a relationship I never thought about in the begining of the process, but it's inevitable. So much is shared, whether good or bad, then it's over. I think it's great you went with your friend. It must have been nice for her to have someone that could speak from experience. Thanks for writing.

    Hi Mrs. Sudz, thanks for reading! You reminded me I didn't mention it, but I have silcone implants. They feel fine, soft. Good luck with whatever you choose and with the surgery on the 9th. Feel free to ask if you have questions.

    AnneMarie, five months with full expanders? I feel for you. I understand the purpose, but expanders are the worst! Designed by a man, no doubt. Constant pain for the 4 months I had them, but like you, I can look back on it and feel good about the choice. Thanks for your comment!

    Hi Jan, I wish you were closer so I could help. It is different for everyone and my experience is far from the norm. Many people have all their work done in a shorter time period, but it is a process and making changes isn't easy, but can be done. I hope if you really want reconstruction, you try to find a way. You should have what you want. xoxo

    Hi Nancy, thanks for writing. Yes, I can give my seat to someone else that needs it. I don't see anything else that needs to be done, reconstruction wise anyway. I totally understand about dragging feet. Part of the reason my reconstruction took so long is I needed time after each procedure to process and get comfortable about moving forward. It takes time. Don't push, you'll know when you're ready.

    ReplyDelete
  7. Stacey,
    This was such a great post. I'm curious--did you find any feelings of letdown or the blues when you were done? I did and it totally blindsided me. I had scheduled my tattooing appointment over the lunch hour and was totally mystified to find myself in such a funk I was nearly in tears. I took the rest of the day off instead of going back to work so I could just be alone. I found out from a friend that she felt the same way--burst into tears at lunch after her last chemo--a happy day in anyone's book. Must be all that pent-up emotion.

    ReplyDelete
  8. Hi Jackie, first off, thanks for the persistence in leaving your comment! I'm glad it finally worked for you. I think you ask an interesting question. I had the blues before any of the procedures, surgeries certainly and then nipples and tattoos only because it was all so hard to comprehend. There was a lot of anxiety involved. Medical procedures are the great unknown for so many of us. On this last day? It wasn't a letdown, but I definitely didn't feel happy. It was weird, yeah, I was finished, but with what? Reconstructed breasts? Is there joy in that? More of an acceptance, I think. This is a good topic for #bcsm. I'd love to hear from others.

    ReplyDelete
  9. Stacey, I LOVE this post. You really capture the experience of reconstruction well. The day that my reconstruction was "complete" was the day I realized that I can't ever put cancer behind me, nor the paranoia you speak of. It's just never really over. I was hoping for closure once the process was finished, but I got no such thing....

    ReplyDelete
  10. Stacey, great post! Hugs to you for completing another leg on "the journey." While many women do go through recon with nary a blip, there are many, many, many more for whom the recon road is long and steep and ridiculously complicated. I had no idea going in just how arduous the process would be — and I asked a million questions up front. That's the thing about cancer: It has a mind of its own, and try as we might to outsmart it, it surprises us with its uncontrollable nature. And yup, that's an understatement! ;-)

    ReplyDelete
  11. Beth, I think we can't put it behind us, because recurrence is always lingering. There isn't any closure and that's the what's so difficult. Maybe that's why I can't be that psyched over the end of reconstruction...the cancer is still a fear. That never ends. Anyway, rambling here. Thanks for writing.

    Renn, you got that right. It certainly keeps surprising us, though when will it surprise us in a good way? That's the question. Thanks for your comment!

    ReplyDelete
  12. Stacey, So happy that you are content and are able to 'giving up your seat'. That has to be a really great feeling and good on you for reaching that point. You really give me hope that one day, I can be done with my own reconstruction-if I so choose. I can relate to the long process (had expanders for 17 months) and had I known all that was 'really' involved, would I have signed on the dotted line? I am still not sure. I am okay with my implants, I guess but I keep waiting for them to get more comfortable. Maybe that will never happen and I will have to go back. big sigh...Thanks for sharing your hope. Rebecca

    ReplyDelete
  13. Usually I do not post on blogs, but I wish to say that this post really forced me to do so! Thanks, incredibly nice article.

    ReplyDelete