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.

moving on

It has been 16 months since the first biopsy revealed cancer in my right breast. There were MRIs, ultrasounds, more biopsies that showed more cancer, a mastectomy, a reconstruction surgery. And lots of worry.

My mind slowly adapted to the idea of cancer in my body. My mother had died at the age of 59, and here I was 57, and then 58 years old. Would I die early as well?

Yesterday, February 27th, was the 36th anniversary of my mother’s death. It was a day of enlightenment, really – the day that I saw that it was time to move on.

My body is cancer free, and I am getting on with my life. My destiny is to live.

My preoccupation with my breast cancer is over.

And thus officially ends this blog.

Aromatase Inhibitors, Vaginal Atrophy and Sexuality

It is hard to put this to words – the way that I know my spirituality and sexuality to be intimately connected. There is an energy – an aliveness – that I am aware of when I am in touch with my sexuality. This does not necessarily mean that I am having great sex with my husband. It is something much broader that carries through my whole day, into every corner and cranny of my life. It’s how I know myself, a deep joy in my bodily existence that I can tap into at any time.

Aromatase Inihibitors – Femara for me – brought all of this to an abrupt stop. Extreme vaginal dryness not only has made sexual intercourse painful and something that I fear (what if my skin in there tears? what if I get another urinary infection?) but also has confused my sense of sexuality.

I have been taking Femara for 9 months. After using a myriad of over the counter creams and gels, 3 major urinary tract infections and repeated complaining about the discomforts of vaginal dryness, both my oncologist and my gynecologist have recommended that I use Vagifem. Vaginal atrophy is progressive, they tell me, and will not get better with time. It most likely will get worse.

This is confusing and scary to me.

The articles on the Internet say that Vagifem is not recommended to women taking AIs because it counters the effect of the AI – blocking all estrogen from the system. Estrogen levels are elevated in the blood of women using Vagifem with an AI.

So, I would be taking a drug ($30 a month) to block estrogen, and another one ($30 a month) to put estrogen back in.

Money matters aside, I wonder if I wouldn’t be better off stopping both drugs.

I’m annoyed about all those years that doctors were prescribing estrogen, en masse, to menopausal women. The drug companies made a bundle before they discovered that estrogen increased the incidence of breast cancer.

Now the drug companies are making a bundle on estrogen-blocking drugs taken by all those women who got breast cancer. Who is to say that in a few years we won’t find the down side of these drugs?

Doesn’t Nature know best how to manage the hormones in my body?

And then there is the cancer worry. What is it that caused my body to develop breast cancer? Something in the environment? Hormone pumped cows? The synthetic estrogen that I took 10 years ago?
Will an estrogen free body keep the breast cancer from returning, and should I diligently pursue this approach, even if it means no sex and urinary infections?

I have many questions.

the thing about the Femara

The thing about the Femara is that I never know if my feeling bad is due to the drug, or just the way I would be feeling anyway.

Well, almost. I do know that my bones and joints ache a lot more. And that the vaginal dryness is like nothing I have never before experienced.

But why do I feel so disconnected from my body? Like my body is no longer me, but somewhat distant. I think that sex has a lot to do with connecting myself with my body, and that has been less than satisfactory. But also I don’t seem to get a rush of endorphins when I exercise anymore. I always feel more or less, not well.

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.

sadness

when sadness comes to the surface
does that mean that it is about
to go away?

when all I can do is sit with it
does that mean that
I have made a home for it?

today Dr. Rimmer told me that
it was time for me to be
happy again.

but happiness comes through
(not after)
sadness for me.

things are getting better

Things are getting better.

For one thing, I think that some swelling is going down in my right (silicon) breast, so that I don't feel quite so freak-y looking. This all may work out without an additional surgery.

For another, I have an appointment with my primary surgeon on Monday. It's really just a final followup from the mastectomy surgery in Decemeber, but I also need some reassurance that everything, anatomically, is stable and ok - like, are you sure that that little strip of skin going down the center of my 2 breasts is not going to pop out??!

And ... I had lunch with 3 friends yesterday (2 women and 1 man) and they all told me that my breasts looked fine. Maybe a little lopsided, but nothing that was overly obvious.

I'm ready to let go of my hyper-sensitivity and move on.

I'm stuck

I am confused. I am a mess.

The only way I know to work my through stuff is to write. Or at least write first, so I can have some idea of what’s going on.

I need to get beyond all this breast stuff. I’m hung up on the cosmetics of it all. How I look. I’m embarrassed with this big round silicon boob that sits high on my right side. I make sure my clothes cover it up, which isn’t always easy in Florida. I have no idea what I will do about wearing a bathing suit in public. I will have to get something very high and loose – do they make bathing suits like that? I am not naked when I make love with John anymore; I always have something covering my chest.

And I'm embarrassed with being so obsessed with it all.

Some people tell me that I should go back to surgery and get it fixed right away. Others tell me to wait, see if gravity and time will help.

I don’t know what to do.

I feel silly being so hung up on how I look. One woman said to me, “I never knew this part of your anatomy was so important to you.”

I didn’t either.

Someone recently pointed out something I wrote in 2006 on another blog about silicon implants. Boy, have times changed.

Am I over-reacting? Do I need to just think about something else and move on? How do I do that?

$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.

sex help wanted!

For the first time in 35 years of marriage, John and I need “help” – as in a lubricant. I blame the damn Femara for this vaginal dryness. I don’t even know what to look for at the drug store. Maybe I should go to a sex store. And I still don’t feel comfortable making love while exposing my breasts.

Bummer.

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.

privilege

I am one of the world’s “privileged”.

Because I have health insurance, and because I live in a country where medical care is readily available, I discovered my cancers early. No expense was spared to properly diagnose and treat me. I have had the best doctors and care that could be given to me, anywhere in the world.

This is not the situation for most of the peoples of the world. I did nothing to “deserve” this privilege, it was merely an accident of my birth.

Had I not had this “privilege”, my cancers would have spread and I would not live to see my 60th birthday.

This thought humbles me. Healthcare should be available to everyone in the world, not just me. Why should I live, while others must die?

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.