Saturday, October 18, 2008

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.

Wednesday, June 4, 2008

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.

Saturday, April 26, 2008

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.

Monday, April 21, 2008

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.

Saturday, April 19, 2008

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.

Tuesday, April 15, 2008

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?

Saturday, April 12, 2008

$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.

Thursday, April 10, 2008

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.

Saturday, April 5, 2008

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.

Tuesday, April 1, 2008

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.

Monday, March 31, 2008

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.

Monday, March 24, 2008

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?

Saturday, March 22, 2008

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 ...

Tuesday, March 18, 2008

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.

Saturday, March 15, 2008

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.

Friday, March 14, 2008

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.

Thursday, March 13, 2008

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.

Monday, March 10, 2008

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.

Tuesday, March 4, 2008

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.

Saturday, March 1, 2008

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?

Thursday, February 28, 2008

recurring cancer

I have been thinking about cancer lately.

Over Xmas, my sister’s brother in law was complaining of a cough, night sweats. They discovered cancer – in his lungs, his bones, his lymph nodes. They don’t know where the primary cancer began, just that over the last few years it had metastasized everywhere without his knowing. He’s undergoing chemotherapy now, but they don’t expect him to live more than 6 months. Verne has always been healthy, he ate right, his father is still alive and 95 years old.

When I was discovering my breast cancer, another friend of my sister was discovering hers. We were both on the same page – 2 cancers in one breast, so a mastectomy was required. She underwent reconstruction during her mastectomy a week before mine; they took tissue from her tummy to make a breast. Her surgery lasted 7 ½ hours. I had an expander put in. Though my initial mastectomy surgery and recovery was easier, I’m now facing another 3 ½ hour surgery next month (in less than 2 weeks, as a matter of fact).

Her cancer was HER2 positive but was not estrogen responsive. Mine was HER2 positive and estrogen responsive. She is undergoing chemotherapy now. I’m taking the estrogen blocker for 5 years.

The big fear is a recurrence of cancer. My cancer was small, only detectable by MRI – but it was invasive. The cancer cells could have gotten into my blood or lymphatic system and spread somewhere else in my body – my bones, my brain.

A recurrent cancer is much more problematic than another primary cancer. A primary cancer can be removed and then treated with chemotherapy. A recurrent cancer means that a cancer has ventured out of its site of origin, and there’s no telling where it will turn up next.

I guess I’ve sobered up some on this issue of cancer. I no longer feel so invincible. I take my Femara every day, even though I blame every ache and pain and sleepless night on it.

Sunday, February 17, 2008

Femara

I suppose because I squeaked my way out of chemotherapy, I didn’t put up much of a fuss when Dr. Bertrand prescribed the Femara.

Femara is an estrogen blocking drug. The invasive cancer that was removed from my breast was 10% estrogen-responsive, which means that in the presence of estrogen, it grew faster. The theory now is that if there are any more of those cancer cells in my body, if there is no estrogen around, they will not grow or spread.

Since I am post-menopausal, most of the estrogen in my body comes from adrenal androgens rather than my ovaries. These androgens are converted into estrogen by an enzyme – the aromatose enzyme – and Femara works by blocking this enzyme.

My problem with all of this is that there must be a reason that my body continues to produce and need estrogen after menopause. Long term effects of blocking estrogen are not known. Of course, the Femara website touts the wonder of the drug with happy-looking women graphics. Just like they did when they prescribed Hormone replacements en masse for women 10 years ago - before they admitted that women who took the drug had increased chance for breast cancer.

But the doctors seem to think that my chance for a recurring cancer outweighs the risks of taking the drug. And they want me to take it for 5 years!

I’m on my 5th day.

The list of side effects is daunting. Hot flashes, sleeplessness, muscle aches, fluid retention, weight gain, fatigue, headache, dizziness, bone fractures, nausea, etc.

I try not to focus on the list because I’m susceptible to psychological suggestion side effects – if you tell me I could get it, I will. But I do feel tired, ach-y, and bloated. My throat is dry and sore. I think that I have bad breath. This is after a few weeks of feeling really good after the mastectomy.

I guess I am feeling a bit depressed of late.

John and I are trying to get away some before my reconstruction surgery on March 12th. We visited Eric in Fort Myers, and are going to Kiawah Island the last week of February. I am hoping that things work out so that we can get to the Southwest in April.

But I’m learning not to make too many plans, rather to be attentive and follow the cues of life as they are given. Something is unfolding. Trying too hard to impose my own agenda screws up the unfolding.

Friday, February 8, 2008

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.

Wednesday, February 6, 2008

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.

Sunday, February 3, 2008

the health insurance dilemma and other worries

To add yet another wrinkle to this saga, last week my husband was laid off from his job. We got our health insurance through his company. Not only does this make me incredibly mad – John had worked for this company for 11 ½ years, was a dedicated and gifted engineer – it also makes me sad that the bottom line always takes precedence over lives in this country.

Anyway – I guess for the next 30 days we are covered, and after that we are assured by “cobra” that if we pay for it ourselves, we can continue the coverage for another 6 months. I am expecting that the cost will be more than $1000 per month. Gee. We’ve already lost John’s income, so I’m not sure exactly how we are going to manage. I don’t know what happens after 6 months.

Universal Healthcare sure would be nice.

On Thursday I should get the results of the Oncotype DX assay test and know whether or not I am high risk for cancer recurrence. Supposedly 50% of the women who are in my category - early stage cancer, estrogen responsive, and clean lymph nodes – are in the low risk range and do not need chemotherapy. Another 25% are in the high risk range, and the other 25 % are somewhere in the middle.

I guess this means that my odds are good. Last week Dr. Rimmer said that he "would be very surprised if I needed chemo." I keep remembering the day I saw the MRI of my cancer on a computer screen. It looked shiny and bright, like a small diamond.

Tuesday, January 29, 2008

the decor of a plastic surgeon's office

There were new silver chairs in the lobby of Dr. L’s office today. And new curtains.

There was some art on the walls: A black and white beach scene, with large rock-like things in the foreground of the picture that were like the green pod-like things on the table. It appeared to be a cross between a photograph and a painting. In the examining room there was a picture that reminded me of one of my weed photographs. The veins of the leaves were a beautiful blue.

I’m fascinated with the d├ęcor of this doctor’s office. It’s a nature theme, but also with subtle silvers and golds. The receptionist said that it was supposed to be “calming”, and it is.

The beauty of nature and that of the human body is clear and obvious, yet somewhat understated. I like that. There were a few black and white photographs of women in the hallway. I wish that there was at least one of a man’s body.

What I don’t like are the cosmetic advertisements that are in the shelving in the lobby. I would like to see abstract sculptures there. I’m annoyed by the cosmetic advertisements in all of the doctor’s offices these days anyway. Reminds me of snake oil.

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 …

re-thinking plastic surgery

There is a peculiar intimacy (or chemistry) between a surgeon and patient. Surgery opens up a whole new level of trust that you have to have with your doctor - your body is literally in their hands.

I always watch a surgeon’s hands. I know people who have “brains” in their hands. I do not, but I know people who do. My friend, Nancy, is always doing something with her hands. She will be talking to me and then all of a sudden hand me a wonderfully complex and beautiful paper sculpture that she had been making while we are talking. I am amazed.

So I look for this gift in a surgeon’s hands.

But I also look for “relatedness” and ability to “connect” with others as individuals. I like to think that my surgeon is aware that there is a real person (me!) that is way down under all that anesthesia.

Plastic surgery adds yet another dimension to this patient-surgeon chemistry. Until I ended up in a place where I needed cosmetic surgery, I always pooh-poohed it as a frivolous luxury for the rich. Why mess with what God made? Why want to look forever “young”?

Now, I’m having to re-think all of those attitudes.

Beauty and art enter the realm of science and medicine.

When Dr. Lickstein “reconstructs” me, I want beautiful breasts. Like God made. They don’t have to be perfect. I don’t want large breasts, I never had them before. But I want them to look “real”, whatever that means.

I guess I’m asking for a lot.

Friday, January 25, 2008

2nd thoughts on cancer

If indeed I do have this more serious form of cancer – this genetic predisposition toward producing a protein that feeds cancer cells – then I am not going to worry. I am not going to become mired in self-pity or even pious prayer.

Instead I am going to be me, to live, to rejoice in the gift that I bring to the world and life. I am going to receive and enjoy everything that is given to me.

And I’m not going to do things that I don’t want to do.

(It may be that I need to start planning that trip to the Clairvaux prison in France.)

Thursday, January 24, 2008

still in the woods

Just when I thought I was out of the woods, home free, exercising, getting my life back together …

The pathologies from my mastectomy looked pretty good to me. Small tumors, clean nodes, clear margins. Even Dr. Rimmer said that I had come out on the good side of the numbers, with a 9mm tumor which is 1 mm shy of the size at which they would recommend chemo.

It seems that there are other factors. Like HER2/neu.

HER2 is a protein that promotes the growth of cancer cells. One of every four breast cancers over-produce this protein, which means that the cancer is more aggressive. They think that breast cancers that test positive for HER2/neu are more likely to recur.

I had 2 primary cancers in the breast that was removed. Both were relatively small. The DCIS was more extensive (2.5 cm) but showed small places (1mm) where it was getting out of the duct and becoming invasive (micro-invasion). Both cancer sites tested positive for HER2. The invasive site was less positive (rated 2.something), the DCIS site was more positive (rated 9 something). I don’t have a copy of the report.

If it were not for the HER2 distinction of my cancers, I would definitely not benefit from chemotherapy. As it stands now, it’s unclear whether or not I should be given the drug, Herceptin, which, according to Dr. Bertand, my oncologist, is given with (or as) chemo-therapy. (I still don’t really understand cytotoxic therapy, I’ve been avoiding the topic).

But there is this test - the Oncotype DX assay. It can predict the likelihood of breast cancer recurrence in women with newly diagnosed, early stage invasive breast cancer. That’s me. Oncotype DX also assesses the benefit from chemotherapy.

The test is also very expensive. Like thousands of dollars. Evidently it analyzes the genetic makeup of the cells. Dr. Bertrand says that the results are a good guide to whether or not chemotherapy should be prescribed for people like me. She says that it will help us to decide.

I’m not sure if my insurance will cover it. I have told Dr. Bertrand that if my insurance does not cover it, I am not inclined to pay for it myself. I would rather take my chances and NOT have chemo.

Somehow, I still don’t feel like I have cancer! I feel more like a number on a chart. Maybe all of this radical treatment (mastectomy, chemotherapy) would be easier if I had BIG cancer tumors, or if my lymph nodes were infected with cancer cells and I knew I was in trouble.

Anyway, we’ll see. The test takes 10 days. Dr. Bertrand is going to order it. I have another appointment with her in 2 weeks.

Friday, January 18, 2008

ohmygosh (looking at myself)

Ohmygosh – look at me. That’s my reaction at looking at my chest and the site of my mastectomy surgery, and I don’t make the effort to look. On the one side is this beautiful, soft, natural breast. On the other … scars, bulges of skin, a hard round something (the expander). This is my body? This happened to me?

It’s been a good week, though. For the first time, I am beginning to not actively hurt – though there are still places of soreness. Dr. Lickstein gave me the first injection of “new breast” (saline into the expander) and it was no big deal. I had been expecting the worst. He told me not to worry about the seroma and to get on with exercising my arms. And the seroma does seem to be getting better.

It has been a month since my surgery. Tonight I asked John a lot of questions about what happened on that day of surgery. Funny how little I remember.

I went to an exercise class this morning and it was just wonderful. I was able to pretty much keep up with all the ladies and I left feeling flushed with endorphins. I’m going again Monday. I was able to do most of the arm exercises using low weights.

And I made an appointment with the oncologist for next Thursday. Finally I guess I’ll face the facts about my cancer and what I need to do now.

Sunday, January 13, 2008

hurting and healing

I still hurt. I wonder how long it takes to heal. I wonder when this seroma will go away. My mastectomy surgery was 4 weeks ago tomorrow, and it seems I should be further along the in healing than this.

I decided to keep this blog public, because when I search for answers to my questions, like “how long does it take for a mastectomy seroma to heal?” the most I get is research answers. Like: “the study shows that the length of time that drains were left in does not affect the incidence of seromas.”

oncology

I am dragging my feet on going to see the oncologist. My pathology report came back looking pretty good – clean nodes, clean margins, small tumor. According to Dr. Rimmer, the tumor was 1 mm shy of warranting chemo.

So, I’m assuming that I’m relatively safe, as far as cancer goes. And that I am very lucky. I even feel out of place at the breast cancer support group where most all of the women have had to go through chemo. My own cosmetic concerns seem trivial.

One of the reasons I’m dragging my feet is because I want to heal from the surgery. Everything happened so fast before the surgery, and now I like having the freedom to do things on my own time. The other is that I know that she will want to put me on an estrogen-blocking drug, and I don’t like that idea.

But I know that I need to at least argue my case with her.

seroma

The miracle breast is really a “seroma” – a not uncommon complication following mastectomy. During the surgery my skin was lifted from my chest wall to remove the breast and the lymph nodes. Then when the skin was laid back down, there was a “space” between the skin and the chest wall, and it filled with fluid. The drains removed this fluid and then the skin was supposed to re-attach to the chest wall. Except sometimes this doesn’t happen right away. I guess the skin is pretty inflamed and needs some time to heal.

I had my 2nd drain in for 2 weeks. Drains can’t stay in forever. There is risk of infection, and they are so damn gross and uncomfortable. So the doctor had to make a judgement call. When my 2nd drain was removed, the serum continued to fill the “space”, resulting in a blister-like swelling that goes from my back, around under my arm to under my non-breast. It tends to be sore and annoying. Last night I woke up with little shooting pains just under my non-breast.

I still cannot wear a bra of any kind. Thank God (or thank you, Sue) for the little mastectomy camisole that I have been wearing every day for 4 weeks now.

Last Friday (10 days ago), Dr. Rimmer said that my body would reabsorb the seroma in a couple of weeks. Hmmmm. I don’t see it getting any smaller.

On Tuesday I go to Dr. Lickstein for my first injection of “new breast”. I wonder what that will be like, and I wonder what he will say about the seroma.

Thursday, January 3, 2008

miracle breast

I am growing a new breast out of my right side. When I asked John to feel it yesterday, he said “oh my”. Who needs plastic surgery?! Perhaps this new miracle breast will give miracle milk!

Seriously, this is probably a build up of fluid that the drain was taking care of and now my body is supposed to somehow reabsorb. I will see what Dr. Rimmer says tomorrow. Dr. Lickstein seems to think that everything looks the way it is supposed to look.

I am still very sore, especially under my arm, and still taking the Tylenol 3 at night. I think it is the codeine that I like because it helps me to sleep better.

When I told Sebastian about my new miracle breast, he asked if I thought I might have a future in the circus. I am thinking more along the lines of the cinnamon bun that looked like Mother Theresa. Perhaps a shrine …

Tuesday, January 1, 2008

my body

Today I celebrate my body.

Though I am still sore and swollen, and my ears are screw-y (water on the cochlea), once I got the drain out and off the antibiotic, I could sense my own body’s innate integrity for healing kicking in. I find myself glorying in the wonder of this. I smell the air. My body feels like a very good friend, rising to the occasion, glad to be back!