breastdeconstruction.wordpress.com

This saga has turned a corner, picked up on another blog:

http://breastdeconstruction.wordpress.com/

deconstruction

I am ready to be deconstructed.

Four and a half years ago, after a mastectomy that removed my right breast, 2 silicon implants were placed in my chest.  The one on the right replaced the breast that was removed.  The smaller one on the left was supposedly put it to make it more "match" the fake right breast.  The left breast needed a lift.

It didn't work out so well, cosmetically.  Actually, the lifted left breast "looks" pretty good, but it doesn't even come close to matching the silicon blob that protrudes from my right chest.  The right implant never "settled", so it sits high on my chest, almost to my collarbone.  I've heard the doctor say that it is "too large".  I think he means large, width-wise, because every time I extend my right arm I feel a pinch in my underarm area.  This is especially annoying when I swim.  

For the last year or more my breasts have become more and more painful.  There is a constant ache around the right implant.  I recently had an MRI to check and see if anything was wrong, but that came back with a diagnosis of "everything looks fine" in there, meaning that the implant was not leaking.  I suspect that it is muscle pain, because the implant is actually under the pectoral muscle, and the muscle feels stretched and strained.  It is especially painful when it is cold outside.

Anyway, I've had enough.  I want the implant(s) out and am ok with being flat chested on one side.  I'm not sure how the left breast will look with the implant out.  Like a deflated balloon?  But a plastic surgeon should be able to do something about that, shouldn't he?

Much as I don't like the idea of someone cutting on me, I want this done.  I can't wait to be free of my silicon chest.  For more than 4 years I've felt like I had a plate of armor weighing down on me.  I don't hug people closely - I always hold them just a little bit a part from me.  I'm protecting myself and I'm embarrassed by this barrier that is in me.  I'm afraid to be touched on or around my chest.  This all makes me sad.  

I'm ready to let it all go.  The silicon, the fear.  I want my body back, even if it is wounded and flawed.

I want to touch and be touched.

My appointment is on Tuesday, and that is when I will schedule the surgery.

[My gosh, I notice in the post below, written more than 3 years ago, I am saying much of what I say today.  Funny that it has taken me 3 years to get to the place where I am ready to go through another surgery.]

rethinking reconstruction (a year too late)

Well, it seems as I’m not yet finished, as I pronounced the end of this blog in the previous post.

It seems that I still have a lot of things related to breast cancer to find my way through. Maybe there is no end? Maybe I have only just begun?

Today, I wish that I had never had breast reconstruction surgery. I wish that at the time of my breast diagnosis, I had been given more choices as to how to treat the cancer. In particular, I wish that there had been some support for having the breast removed without having to have a fake breast to replace it. I wish that there were more women walking around with one breast, and that they supported other women who did not opt for reconstruction.

How did we all get sucked into the reconstruction business, anyway?

Before my mastectomy, I asked again and again why 2 lumpectomies couldn’t be done on my one breast. Because you wouldn’t have much breast left, I was told. It would be better to take the whole breast off and reconstruct.

Now, one year later, I don’t think so. I would rather have a small, radiated 2-lumpectomied breast than what I have now.

Both of my breasts still hurt. I have fluid behind the nipple on my left breast that was “lifted” to match the strange round silicon thing that replaced my right breast. It hurts. I still have fluid around my right silicon breast. Some days it all just hurts. I find myself wishing I didn’t have any silicon in me. I would rather just be half flat chested.

I’m not sure what I’m going to do about any of this. Removing everything, at this point, may make it worse. It means one more surgery.

I’m also a bit chagrined that I got suckered into the whole breast implant phenomena. That I would look “great” – as in sexier, younger, whatever.

I'm thinking more and more about DECONSTRUCTION.

a place to put my hurt

First, a confession: I can be quite neurotic – hypersensitive, over-dramatic, lacking in objective perspective, even downright loony.

Perhaps I am still “processing” the whole ordeal of losing my right breast. Or maybe I'm this way all the time, but won't admit to it without an excuse.

I do not want any of the feelings that I write here to reflect on the professionalism and skill of the doctors who have treated me. Even though I have not quite come to terms with my reconstruction surgery – things are, in fact, still changing – I consider my plastic surgeon to be extremely competent, responsive, and perhaps a genius.

I am getting used to my new breasts – even starting to feel that they look good, despite not being perfect matches. The right breast is falling more and I don’t feel so strange looking.

And because I’m more healed, I’m not afraid to expose my breasts anymore. (Yes, I make love with nothing covering them now – yeah!) What is it about the way I do not want others to see my wounds - to see where I hurt? I bet a shrink could make something of that.

Maybe part of my reason for writing here is to have a place to put my hurt.

$39,070.61 for a boob job, and this isn't over yet!

The hospital bill came last week for the Breast Reconstruction Surgery that was done last month. $39,070.61. And this was an outpatient surgery. My gosh. How do women who are not breast cancer patients afford these boob jobs?! Or do they charge more when it is covered by insurance?

My insurance (for which I pay $1200 per month) is covering all but $1405.23. But I’m not sure if this is the end of it. It seems that these bills keep creeping in for months after the affair.

And it seems clear that I will need another surgery. Will my insurance cover that? We can barely even afford the insurance. (Actually, we can’t afford it.)

Yesterday I was visiting with girlfriends and I showed them my breasts. This is the first time that I have uncovered myself to people other than John or doctors. Both Lynda and Deb think that the way I am now is unacceptable. The left (native) breast is fine, lifted and slightly augmented with silicon at the top. The right breast, the silicon implant, is very high and round and much larger than the left side, at least on the top. So that I’m both lopsided and imbalanced. More and more, I’m beginning to think that taking out all implants, and learning to be as I am – a unibreast – is the best solution. But I’m not sure if I’m brave enough. I’m self-conscious enough of my strange looking chest without clothes on, how would it be to look so “different” with clothes on?

Before the surgery, Dr. Lickstein told me that 25% of Breast Reconstructions require further “procedures” to make things right. I guess I’m in that 25%. At the time I thought that meant a little tuck or something in the office. Now I realize that it means another surgery.

no end in sight

My visits with the oncologist are always somewhat depressing for me. Like, is there ever going to be an end to this?

Every time I go in I have to have my blood checked to see if my liver is holding up under the onslaught of the Femara (the estrogen blocking drug). And she always wants more tests – a bone scan, a lung x-ray, a colonoscopy. Will I ever be considered “cured” of cancer? All this looking is nerve-wracking. One of my computer clients says that they will look until they find something.

When my oncologist saw my reconstructed breast, she said “oh no, no, who did this to you? Why do they always insist on cleavage rather than softness? You must get this fixed!”

So … just when I think I’m getting to the end of this saga, it seems I’m still somewhere deep within it.

I still haven't started the antidepressant that she says will make me "feel better". I have yet to determine just what it is that I'm trying to make my way through here.

another surgery??

I woke up this morning, climbing out of my depression, knowing in my bones and soul a spirit that can face breast cancer and everything that goes with it – including a lopsided chest.

I met with my plastic surgeon, Dr. Lickstein. He seems to think that I am healing well, and I can get back to exercising in a week (yeah!). He also thinks that we should watch the fake boob for a couple of months to see if it will fall some. If not, he suggests another surgery to exchange the implant with another smaller one. This would be a simpler surgery – 45 minutes he says – with little pain. But I would need to go under anesthesia again.

I’m open to the idea.

just down ...

I am down now. Just down.

I had a major meltdown in the Gander Mountain Sports store

I went with John to the store and was looking at some of the exercise tops. Trying them on, I realized that, even with reconstruction surgery, I will never look normal, or be able to wear such things. The fake breast is higher, and with so much “cleavage” everything looks lopsided.

And I still hurt.

When I was diagnosed with 2 cancers in one breast, I wanted to have 2 lumpectomies with radiation, rather than a mastectomy. I got Dr. Rimmer to admit that my chances for recurring cancer would be the same with the lumpectomies (with radiation) as with the mastectomy, and that the ONLY reason for going with the mastectomy was cosmetic. He insisted that with 2 lumpectomies, I would end up with a deformed breast that I would never be happy with.

When I spoke with my cousin’s husband, who is an expert on breast disease, he said that 2 lumpectomies on one breast would be “out of protocol” and that I would have a hard time finding a surgeon who would do it.

Well, I have a deformed breast now. And 2 breasts that are very scarred.

I try to look at the bright side (I don’t have cancer), and I feel childish whining about the cosmetics, wishing I had my old breasts back. I will adapt, I guess.

But that’s the way I feel today. Disappointed.

as soon as I can swim ...

As I heal - and the tightness, pain and swelling go down, and even though it all still feels and looks rather wierd to me - I have to admit that I am somewhat astonished (and pleased) with the reconstruction surgery.

My native breast is beautiful, the perfect shape. Like when I was 25 years old. The other breast (I still haven't decided what to call it - the "silicon" breast?, the "new" breast?, the "alien" breast) is trying hard to fall into place and be a companion.

I still worry, though, that the space between the 2 breasts is wide enough and stable, and not going to pop out. I guess that in time I will trust this new arrangement of things.

I developed a bladder infection last week and had to take another round of different antibiotics. Tonight is my last one, and I am almost feeling back to normal. As soon as I can swim ...

healing ... again

It is good for me to be told: no you cannot exercise, no you cannot swim, no you cannot work.

I am free to do nothing. To sit outside with Jubilee and watch the wind in the trees. To be empty, and quiet.

I am healing … again … I think both emotionally and physically … from the trauma of being diagnosed with breast cancer, having my breast removed, and then “reconstructed”. In time, I want to write a little more clearly and decisively about this experience, and in a way that will directly address the way the medical system and the culture responds to breast cancer, and the way that the patient gets sucked into that mindset.

Reconstructive surgery is touted as either “no big deal” or the greatest thing since sliced bread. It is neither. It is both painful and disfiguring, even if you have the best plastic surgeon (and I do).

I know that I will adapt to my new breast, but I also know that I will never be “normal-looking” again. I wonder if I could have had the guts to be a uni-breast, if it had been more encouraged, more accepted.

My cancers were very small (the invasive cancer was detectable only by MRI) and early stage. There must be a way to stop cancers at this stage without resorting to removing the entire breast. I have read somewhere about an infrared (I think) beam that could be directed at the tumor, and kill it from within. However, it needs further testing and research. I would have gladly volunteered to be part of that study.

And I will get photos up here of my new breasts – I’m just still feeling a bit too swollen, wounded and vulnerable. So I return to the backyard – to heal.

body reverence

I have renewed reverence for my body now.

I can’t eat things that are not real. Like 7-11 food. I barely can eat meat, unless I am fairly sure it is “clean” (organic, no hormones, no pesticides). I look for the best vegetables and fruits. I can't even drink cheap wine.

I look at myself more gently, no longer criticizing, or trying to “correct” the flaws.

For the rest of my life I will have this “altered” chest. It is not beautiful like the perfect breasts of a young woman. But, for some reason, I feel a profound tenderness for it.

my new breasts

My, my. I had my first look at my new breasts this morning.

Hmmm.

I had to carefully remove all the gauze and stuff, and I was expecting everything to be bruised and stitched and swollen.

Instead I have these lovely 2 small breasts. Maybe a little battle scarred - but mine.

They are not quite balanced or even, but Dr. L says that it will be a few weeks until everything settles out.

I am impressed with my native breast. It looks like it did when I was 25 years old. Perfect. The other one is not as large as my native breast, and not exactly natural looking. The silicon is definitely much softer and more comfortable than the saline expander.

Even though I would never elect to have this surgery, I can see why people who have the money would do it. I think that Dr. David Lickstein must have some kind of special gift for creating beauty.

I'm still a little tired and I run a fever every afternooon and kind of ache. But I've taken a shower and am dressed. It does feel good to have this over with.

breast reconstruction surgery

The morning before my surgery I weighed myself. 147 pounds. I figured I might lose a few pounds during this venture and I wanted to see how much. This morning I weighed 154 pounds. I only ate a half a cracker yesterday and gained 7 pounds. Go figure. It must be all those bags of water that they kept dripping into my veins.

Other than the nausea and headache that goes with anesthesia, things went well. Incision pain was bad yesterday, but that means that I still have nerves in my nipple (yeah!). And I only took 2 pain pills, then decided that the headache pain was worse than incision pain, and switched to just Tylenol. Now, less than 24 hours after surgery, I’m on nothing.

I’m still wrapped in a surgical bra, but they look about the right size. Actually the left breast (my native breast) looks a little larger, but Dr. L says that could be due to swelling. And they look even. I’ll get a better look tomorrow when I take this gauze bra off and take a shower. The right breast feels a lot better than when the expander was in – softer and somewhat lower.

Thank god this is over with. I don’t want to ever go to surgery again in my lifetime.

surgery jitters and more drugs

The woman before me in exercise class this morning was tall and thin. She used the high step and kept up well with the instructor, so she was easy for me to follow as well. When I looked at her in the mirror, though, I noticed that she had very high (and large and round) breasts. She wore a low top, and at times her breasts looked like they were going to jump out!

My gosh. Why do women do this? And yet here I am, 2 days away from “doing it”! I called my plastic surgeon’s office this afternoon and spoke to Leah again. I won’t end up like this, will I? I mean, I’m almost 60 years old, and breasts like that would make me look like a freak. Leah assured me that Dr. L knew what I was expecting from the reconstruction surgery, and that I would not end up with such exaggerated breasts.

Last minute jitters, I guess. I am nervous about the surgery – more about the anesthesia than everything else, though.

I saw my oncologist today and complained to her about the femara. The hot flashes are so pronounced through the night that I don’t get a lot of sleep, and end up very tired most of the time. Along with my bones and joints aching more, I’m pretty cranky. She suggested an antidepressant – Effixor – says that it will relieve much of the night sweating and help me to sleep better.

I’ve never taken an anti-depressant before. Even though I have my moments of feeling “down”, I’ve never considered myself to be clinically depressed. And I’m hesitant to take yet another drug to cover the side effects of a drug.

Anyway, we’ll see. I’m going to get through this next surgery, with all the pain pills and antibiotics that go with it, before I consider taking another drug.

nothing left to do but trust the doctor

I had the pre-op appointment with my plastic surgeon today. Signed a mountain of papers and asked every question I could think of about what would be done during the reconstruction surgery and what to expect afterwards.

Basically, the expander that was put where my right breast was will be replaced with a silicon implant. The implant looks rather large to me, but Leah, the physician’s assistant, says that they just look large outside of my body.

Then, on the left size an incision will be made around the nipple and then down the lower center of the breast. (Ouch!) A small implant will be placed under the muscle and then the skin will be pulled together at the bottom to “lift” the breast to match the other one.

And the table will be rotated up and down several times so that Dr. Lickstein can balance and even them up. I'll be just like a corpse.

The surgery will take 3 ½ hours – but Dr. L says it won’t seem that long to me. Ha ha.

Anyway, I guess I’m ready. I know that it has to be done, and putting it off and worrying about it isn’t going to help. And I trust my doctor – he is careful, and pays attention to detail. He understands the way the body works and heals, and he takes pride in his work. Most of all, there is something "real" about him. I sense that he cares.

There’s nothing left to do but trust him.

I dreamed that I had 2 breasts (reconstruction)

I dreamed that I had 2 breasts, nipples and all.

I don’t know what to expect from my reconstruction surgery. I have now an expander in the place where my right breast used to be - a round area of stretched skin that is higher than where a natural breast would be (and rounder). It still feels a bit tight, but mostly the tissue feels like it has adapted to this foreign “thing”. Sometimes it feels like I (my chest wall) am behind it, pressing against it. When I take off my bra, I feel like I still have something on.

The only time I notice it hurting now is when I swim. The water is still fairly cold, and I can swim for a half and hour or more. Later, for a day or so, there is a deep ache in the non-breast area and under my arm.

Below the expander is the mastectomy scar and a strange accumulation of skin. Just after the mastectomy this was the area that was filled with fluid (the seroma). Now it feels mostly numb and hard, like perhaps it has become some kind of scar tissue.

Most of the time I feel ok with the expander – it doesn’t feel natural, but I can live with it. I know that I don’t like the way that it looks though, and something has to be done.

I have no idea how Dr. Lickstein will shape this into a cavity into which he will place a silicon implant.

Then he will have to “lift” and augment the other breast to match the implant.

I don’t like the idea of messing with my good, natural (and healthy) breast. But I know that there is no other way that I could look balanced, or halfway normal.

The surgery will take 3 ½ hours. I don’t even want to think about what will be done to me – my breasts – during that time. Like, how will he know if they are even? Will he sit me up, like a corpse?

oncotype dx assay results

I passed the test! Or, at least I scored low enough that I was able to convince my oncologist that I could take my chances and forego chemotherapy.

Dr. Bertrand is a tough doctor who aggressively fights cancers. She tends to want to err on the side of “over-treatment”. I am more inclined to trust the integrity of my body with as little drug interference as possible. Without a low score on this test, I would have had a difficult time arguing my case with Dr. B. I think that she must see a lot of people die from cancer.

The test basically says that my chance for a recurrence of the cancer within 10 years is 9%. Chemotherapy would lower that risk to 7%. 2% is not worth it, in my opinion.

She did prescribe an estrogen blocker, Femara. There are some side effects – hot flashes, muscle aches, fatigue, fluid retention … and the long-term safety has not been established. Gee. We’ll see how this goes.

I have tentatively scheduled my breast reconstruction surgery for March 12th, Dr. L’s first available surgical time.

And the good news is that after my appointment with Dr. Rimmer today, I will have no more medical appointments for at least 3 weeks! This is the first time since last October that I have not had 2 or 3 or more doctor things to do in a week.

the "test"

Tomorrow I should get the results of the "test” (oncotype DX assay).

It’s funny not having a clue as to how it will come out. The way I see it, I have a 50/50 chance of being in the low risk group and will not need chemotherapy. I read over and over my pathology reports. There are favorable signs – the cancers are estrogen and progesterone responsive, the Ki-67 marker is less than 10%, the S-phase is low. Actually, the only unfavorable sign is the HER2 positive result. And the fact that there were 2 separate cancers in my breast worries me.

But the result of this test will determine the next year of my life, at least. And how I know and trust my body.

I feel like I did before I knew the results of the MRI-guided biopsy that determined whether the “something” that they saw was cancer or not. I was so hoping for it to be nothing because I did not want to lose my breast.

For now, I am thinking positive. Yesterday I had my last injection of “new breast”, and Dr. Lickstein says that I can plan on implant surgery in 3-4 weeks. I’m actually looking forward to surgery! My expander now is every bit as big as my native breast, and I am confident that Dr. L will put me back together well.

And, since John has been laid off, we have decided to make lemonade and go on a 1 month road trip to the Southwest. Just forget everything and go away for awhile. There’s something healing about that for us.

the basketball on my chest (the "expander")

I just had the 3rd injection of saline into my “expander”. I call it the basketball on my chest. According to Dr. L, there is now 380 cc’s of saline in there. He wants over 400, so that means another injection next week.

It’s not that it “hurts”, but it is quite weird, especially for a couple of days after the injection. I always feel a little shaky after I leave the office. Like my body is just a bit shocked. This week I came home and just laid down. It definitely feels “full” and tight (and big!).

I am starting to get anxious to just get this done, even though it means another surgery. Dr. L says that after the last injection, I will need to wait at least 3-4 weeks so that the stretched tissue can settle down before he can put in the implant. And he says that lifting and matching my native breast will be the challenge for him. I told him that he needed to be like God, and make them beautiful.

And then there is the complication that chemotherapy would bring to this whole schedule. But I’m not thinking about that now …

the drain is out!

The drain is out and I have my life back and I have my body back.

Amazing!

I went for a walk this morning with Jubilee and I smelled so much of sulfur that the bugs would not stop swarming me. And then I went to Dr. Lickstein’s office, not knowing if he would take it out or not, since I still have a fair amount of drainage, and he just took it out. Yeah!

Even though I still have some pain and swelling, it seems that my body now is back to its own integrity and has moved into the driver’s seat. I’m now in active HEALING! I no longer have to take the antibiotics, and I’m beginning to think that I have a life again.

Happy New Year!