like a diamond ...

rethinking reconstruction (a year too late)

2009-03-10T06:32:00.000-07:00

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

2009-02-28T07:20:00.000-08:00

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

2008-10-18T15:17:00.000-07:00

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

2008-06-04T16:15:00.001-07:00

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

2008-04-26T11:38:00.000-07:00

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

2008-04-21T12:22:00.000-07:00

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

2008-04-19T07:52:00.000-07:00

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

2008-04-15T17:00:00.000-07:00

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!

2008-04-12T09:00:00.000-07:00

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

2008-04-10T16:27:00.000-07:00

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!

2008-04-05T08:25:00.000-07:00

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??

2008-04-01T13:42:00.000-07:00

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 ...

2008-03-31T11:38:00.000-07:00

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

2008-03-24T00:29:00.001-07:00

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 ...

2008-03-22T10:55:00.000-07:00

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

2008-03-18T08:48:00.000-07:00

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

2008-03-15T10:32:00.000-07:00

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

2008-03-14T06:30:00.000-07:00

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

2008-03-13T07:27:00.000-07:00

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

2008-03-10T15:00:00.000-07:00

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

2008-03-04T10:05:00.000-08:00

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)

2008-03-01T10:42:00.000-08:00

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?

recurring cancer

2008-02-28T07:51:00.000-08:00

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.

Femara

2008-02-17T07:32:00.000-08:00

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.

oncotype dx assay results

2008-02-08T01:07:00.000-08:00

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"

2008-02-06T06:38:00.000-08:00

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 health insurance dilemma and other worries

2008-02-03T15:58:00.001-08:00

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.

the decor of a plastic surgeon's office

2008-01-29T20:33:00.000-08:00

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 décor 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")

2008-01-29T11:21:00.000-08:00

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

2008-01-29T05:40:00.000-08:00

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.

2nd thoughts on cancer

2008-01-25T00:36:00.000-08:00

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.)

still in the woods

2008-01-24T11:45:00.001-08:00

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.

ohmygosh (looking at myself)

2008-01-18T16:29:00.000-08:00

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.

hurting and healing

2008-01-13T14:15:00.000-08:00

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

2008-01-13T07:22:00.001-08:00

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

2008-01-13T07:05:00.000-08:00

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.

miracle breast

2008-01-03T11:47:00.000-08:00

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 …

my body

2008-01-01T10:47:00.000-08:00

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!

the drain is out!

2007-12-31T15:52:00.001-08:00

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!

2 weeks post surgery and still in a funk (and a drain!)

2007-12-30T10:11:00.000-08:00

In about 2 months time, I went from getting a suspect mammogram to a mastectomy and the beginnings of reconstruction. A part of my body was cut off. One of the drains is still in, 2 weeks after the surgery. I have taken so much antibiotic that I smell like sulfur.

I have worn the same clothes for 2 weeks. A woman from the breast cancer support group thought to give me a “mastectomy camisole”. This is the only piece of clothing that I feel secure in. There is a pocket for the drain. It is soft and gently hugs my skin. I wash it about every other day, and then put it right back on. It is like a comfort blanket.

I take a shower every day, but I don’t enjoy it. My drain hangs, precipitously, at my side. If it dangles, the irritation and soreness gets worse. Once the tubing got hung on the doorknob – real pain. And I have to sort of look at the still mangled looking area where my right breast used to be.

I hope the drain will be removed tomorrow. They tell me I have to have 2 days of under 30 cc’s of drainage. Yesterday there was 28 cc’s. But it looks like I’m draining more today – this morning there was 18 already. I’m trying to stay still, do nothing, anything to stop the drainage and get the damn thing out.

I am uncomfortable with the “aggressiveness” with which my cancer has been treated. My cancer sites were small and early stage. But because there were 2 separate sites, mastectomy seemed to be the only option they would give me. My pathology report, as far as I understand now, looks good. The margins were clean. The invasive cancer was only 9 mm at its widest – 1 mm short of warranting the chemotherapy where you lose your hair. I have yet to meet with the oncologist. I’m in no hurry. I expect that she will want to put me on the estrogen-blocking drug, and I’m not keen on the idea. My cancer cells were only 10% responsive to estrogen, which they say is low. I've heard that the estrogen-blocking drug causes weight gain, sleeplessness, and aching bones. Just what I need.

Basically, I want my life back, and I want to have more say in what happens to me. I want the drain out!

At this point, I’m not even sure I want reconstruction – a silicon breast and more surgery. Yet the expander was put in. I didn’t have enough time to consider all of this.

I wish that more women defiantly wore their breast cancer instead of opting for fake “boobs”. I wish that I felt more comfortable walking around with just 1 breast, and not feeling like I have to “cover it up”. I actually like the feel of the no-breast side of me now. There is no need for a bra, it feels a little free-ing.

healing

2007-12-29T07:56:00.001-08:00

healing means being still
having nowhere to go
nothing to do.

dreams of loss

2007-12-28T22:34:00.001-08:00

My dreams are of having lost something.

Someone has taken my baby – Eric – away. I know that I adopted him, but we had bonded and I was his mother. He would feel abandoned and I wanted him back. I was angry with the women who took him away. But I also knew that I was up against a wall, and that my ranting would get me nowhere. I was not going to get him back, and I had to find a way to live with this pain and loss.

patience

2007-12-28T22:26:00.001-08:00

I am learning to be patient – to be a patient.

It means, first of all, being quiet and waiting. Finding a new way to experience time: not as an empty transport from what-was-before to what-I-want-to-be, but as a resting place for where I am now. A here place.

Things are not perfect (or what I call hassle-free) here. My drain is still in, and still draining and still hurting. The water balance of my body is “off”, and my ears are quite screw-y.

Despite the discomfort, I have a feeling that this is an important place to be now.

It was Debbie (Taylor’s Mom) who mentioned to me that “patience” was a good thing to know when you are sick. I have learned so much from her. Especially about life not always being what you want or expect it to be.

broad daylight love

2007-12-27T07:03:00.000-08:00

It is becoming clearer to me how central personal relationships are to everything. The little kindnesses. The compassion – not just for the starving in Darfur, but for the stooped woman at the shopping center.

The other day Debbie (Taylor’s mother) took my face in her hands, looked at me straight on, and kissed me on the lips. I was a bit embarrassed by such frankness, and looked away. But I appreciated her eye-to-eye and flesh-to-flesh boldness. This is a broad daylight kind of love. Unabashed and unembarrassed intimacy and caring.

wild boars, pain, wierdness and prayer

2007-12-26T11:26:00.000-08:00

It has been 9 or 10 days since my surgery and I feel lost. There is still pain from the damn drain, that just keeps draining. They tell me that I have to have drain less than 30 cc’s a day to get it out, and mine is like an open faucet. I was given another round of antibiotics today, and those seem to make me tired. My ears are screw-y too.

And, like a toothache, I focus on the pain and discomfort, and can’t seem to get very far beyond it. I feel like I can’t get anywhere else until the drain comes out. I’m hoping by Friday, but I bet it’s going to be Monday.

My dreams last night were permeated by running away from wild boars with these two hooked horns coming up from their noses. They were ravaging my right side. (I was laying on the drain side, but it hurts even when I’m not laying on it.)

The one thing that seems to help some is my simple yoga stretches. Moving through and with the pain.

My life is on hold. I don’t accomplish much. Even though I’m out of sorts, I have a feeling something is changing in me. I want to write more, focus, get organized but I am really out of control and just hanging on. I am not serene or calm.

Some fundamental perceptions seem to be changing. Like about prayer. Like about helplessness. Maybe only in helplessness does prayer make any sense. Some women in NY State sent me a prayer shawl that they had knitted. I don’t know these women and they don’t know me, but they heard about my breast cancer and they “prayed” for me as they knitted the shawl. My gosh. I can’t explain how much this touches me, and I am embarrassed at how arrogantly I’ve pooh-poohed prayer in the past.

My body looks weird, very weird. I think it looks like those wild boars have had their way with me. There is the mastectomy scar, and then there is the swelling under and around it, puffs of ballooning skin, like my body is trying to fill up what was taken away. It all red and black. I want to get on with the healing, but I feel like I can’t get anywhere as long as the drains are in, continually irritating everything.

I don’t mind looking weird anymore, I just don’t want to hurt.

3 days after surgery?

2007-12-25T17:19:00.001-08:00

This photo was taken 3 days after surgery (Thursday night) at a Japanese restaurant. I don't think I knew how good I felt! Left to right: Ooma, Frank, Eric, FA, me, John.

Xmas morning

2007-12-25T08:38:00.000-08:00

If I can get my desk cleared, I think I will be sort of back to normal.

Last week was a blur. I was too overwhelmed with just coping to try to write. But it seems clear now that writing is a way that I use to navigate my way through the phenomena of life. Perhaps like art, it is a way that I take what is happening and attempt to form something that I can hold in my hands, or look at, or listen to.

Eric and Jubilee and I took a walk in the rain this morning. As the sky cleared and the sun came out, a clear and complete rainbow appeared. Something magical about that, even on Christmas morning.

Dr. L's new office

2007-12-24T12:54:00.000-08:00

Dr. Lickstein is my plastic surgeon. He is the doctor with whom I will be dealing the most from here on out. I will see Dr. Rimmer one more time, and I need to make an appointment with the oncologist, Dr. Bertrand. But I will be seeing Dr. Lickstein every week or so for the next few months as he “reconstructs” me.

“David” is his first name. He looks like a David. At first glance, he seems a bit “nerd-y” to me – scholarly. He looks to be about 45 years old. He also seems dependable, up early taking care of details. He does not seem like the kind of doctor who caters to the rich. But I bet that's what the rich people like about him, his scholarly and medical grounding and his apparent disregard for trendiness. He came to me by way of recommendations from women who had used him.

They have a new office, and boy is it swanky. Actually, I love the décor. Modern, with a lot of glass, but like a forest. The flooring is a mix of pebbles and carpet patterned with a hint of fern. There is a water wall in the lobby, and a large arrangement of green pod-like things. It doesn’t look like a doctor’s office, but more like a high end architect or legal office.

I think it is appropriate that a plastic surgeon’s office be somewhat artsy. When I mentioned to Dr. Lickstein this morning that the office was “swanky”, he seemed a bit embarrassed, saying that he was still finding his way around. This office, though, is more in my neighborhood – I can walk to it if I cut across a construction site. And it is Lickstein’s neighborhood too. In our casual conversation this morning, as he was pulling out a drain, I learned what temple he attends and where he lives – both nearby.

It’s interesting to be going to a “high-end” cosmetic surgeon. It’s obvious that this office is made to appeal to rich women who pay upfront for their services. It doesn’t look so much like a “medical” place. This morning (Christmas Eve) he was only seeing a few patients like me who had a medical urgency (like getting the damn drains out). Still there were a couple of glamour girls in the lobby (how can you call such a sophisticated place a “waiting room”? There is a climate controlled refrigerator with water, china, tea, etc.)

Dr. L’s old office had some modern art on the walls of the waiting room, and when I commented on them to Dr. L he said that they belonged to his partner, Dr. Pinsky. I wonder if Dr. P is the inspiration behind this new décor?

surgery - a week later

2007-12-24T12:19:00.000-08:00

It has been a week since my surgery. I did not write.

There were too many things going on. My sister was here. There was the hospital, and all the medicine, and the nausea. Seeing the wierd thing that happened to my body – I thought I looked like an alien. The god-awful drains. And the pain, like a toothache, that just stays in my right non-breast. Everyone says that it will go away with time. I hope so. What if it doesn’t?

At first it seemed like I was doing well – walking, healing. Now it seems that I should be feeling better than I do. I am still tired. I still hurt. I still have a drain.

I think I need to start writing again, this time without an audience.

hoopla

2007-12-15T11:11:00.000-08:00

It seems like there is a lot of hoopla going on around me now and I feel somewhat like when I was 5 years old and I was having a birthday party. When everyone began singing to me I crawled under the picnic table. I don’t even answer the phone anymore.

My sister, FA, is flying in from Buffalo tonight. She was originally scheduled to come in tomorrow, but with the snowstorm expected up there tonight, was afraid that she wouldn’t be able to get out. Boy will she be surprised with the 80-degree weather here. We still have the AC on. She likes to talk and can answer the phone when she gets here.

John and I are going to his company Xmas party tonight. That’s always somewhat of a bore. But I am distracted, and I am ok. I don't feel sad or scared anymore.

before a turning point

2007-12-14T16:42:00.001-08:00

I am rather quiet. More quiet than sad. I don't have much of an appetite. When people call, I find that I don’t really want to talk about my health or surgery.

I didn’t sleep well last night. I was worrying about the “sentinel node biopsy” part of the surgery, and realized that I didn’t understand too much about that. So I got up and started researching it, only to find out that it involved injecting a radioactive substance into my breast prior to the surgery. Just the idea of a needle going into my breast now makes me a bit nuts. I called Mary Jean Houlihan this morning and she clarified for me that Dr. Rimmer does not use that technique, and that the radioactive dye would not be injected until after I was under anesthesia. Whew! I also called the Dr’s office to reassure myself that I would be able to speak to the Dr before the surgery on Monday morning. I want to remind him to be frugal and not take any more skin than he needs to.

Zangmo sent a Xmas cactus today, and Don & Ann (computer clients) just sent over a rather fancy robe and nightgown. Sometimes I feel like I am witnessing my own funeral! I get cards and phone calls from people I haven’t heard from in years. I am touched by how caring and thoughtful my friends are – and I still feel somewhat unworthy.

The night before we picked up Eric as a baby I remember writing and remarking how I was able to watch my life just before a turning point. I wonder if this writing is like that.

hospitals

2007-12-13T08:55:00.001-08:00

I don’t especially like hospitals.

I don’t like all the papers that have to be signed. I don't like having to read about everything that can go wrong. I don’t like the way I feel reduced to a set of medical numbers.

And I didn’t like the anesthesiologist that I met with. Hopefully he will not be “assigned” to me.

I feel very vulnerable today. On the way back from this pre-op visit I looked at the darkening sky and just started crying.

the hands of others

2007-12-12T03:26:00.000-08:00

I feel like I am at the end of a “process”. There is nothing left for me to “do”. Not that there was ever anything, really, for me to “do”, but now I know that I only have to be, in the moment, as I am. I don’t need to control things in my mind, make them the way I think that they need to be.

Things can just be as they are.

My sister is coming in from upstate New York on Sunday. This is interesting. Though we are close in age – she is 20 months older than me – we have very different personalities and have never been particularly “close” as sisters. But we were the only surviving children, and there is a strong unspoken bond between us.

She really wanted to come to be with me during the surgery, and I knew I needed to honor that. On the surface, I think I agreed because I wanted John to have someone with him while I was actually in surgery. But there are many layers of complex relatedness going on here and I know that I need to just surrender to it and let myself be amongst family and friends, and let them care for me. I do not need to, and cannot, hyper-manage it.

It’s a little scary to completely put myself into the hands of others. The hands of my surgeons, as well as the hands of my family and my friends. But I do.

know this place

2007-12-11T05:30:00.000-08:00

I love the darkness of these days.

Early this morning I sat outside in the darkness, watching the stars and the wind blowing in the trees. It occurred to me that all of this is mine/me, that my boundaries are not limited to my particular body.

The message: “know this place(as yours and you)”.

3rd wave of sadness

2007-12-10T16:23:00.000-08:00

Today was kind of an off day. If I had not committed to writing everyday, I probably would not write today.

I am feeling a little depressed, a little frazzled and a little sad. Two women from the breast cancer support group called me, and I am grateful for these new friendships. I saw my primary physician’s assistant and waited an hour and a half to get a blood test. They did an EKG and the waves look good though I have an irregular heart beat. I knew I danced to a different drummer. I hassled with trying to get my printer to work. I talked to my sister, who is calling almost every day now (We usually only talk once or twice a month).

I didn’t get to my yoga/sitting until late in the day.

I think I feel the 3rd wave of sadness coming on. It is a more subtle, accepting kind of sadness. A quiet sadness, but sadness nonetheless. My surgery is now less than a week away.

vegans to be?

2007-12-09T15:32:00.000-08:00

Today John and I took the bike (motorcycle) out the back roads to a U-Pick organic farm. The idea is to eat vegan every other night until we get the hang of it, and then maybe go all the way. Tonight we had navy beans with carrots, swiss chard, spaghetti, and butternut squash. Yum! I'm convinced that the problem is with the hormones that the cows and pigs are fed, and the pesticides that are put on the produce. One in every 8 women are turning up with breast cancer. What else could it be? (something seems to be off on the color cast of my camera ...)

staying busy ... or not

2007-12-09T07:43:00.000-08:00

Some of my friends are advising me to stay “busy” this next week. Except that busy – as in having lots of things to do – usually stresses me out.

I am the kind of person who can sit for hours with a cup of tea and watch the sunlight as it plays and makes shadows. Doing nothing relaxes me.

I understand that “worry” can easily creep in if I get too focused on myself. But I do like being quiet and alone.

And I have enough Dr.’s appointments next week to keep me busy. I have to see my primary physician, get blood tests, see the plastic surgeon one more time, have a pre-op consultation at the hospital and meet with the anesthesiologists, meet with an underwear woman for clothing that I can wear immediately after surgery. Each of those appointments will focus on my breast cancer and upcoming surgery, and that’s stressful enough without trying to solve other peoples’ computer problems as well.

I miss not having the extra cash that we have when I work, especially now, but sometimes extra cash is just not worth it.

mastectomies, not a thing of the past ...

2007-12-08T15:02:00.000-08:00

The thing that bothers and surprises me is how quickly and definitively my own breast cancer was deemed a case that warranted mastectomy. I mean, this is 2007. I thought that advances had been made so that options were available for women with breast cancer that would preserve the breast, and that mastectomies were becoming a thing of the past.

I was talking today with my cousin’s husband, who is a doctor in Arizona and an expert on breast disease. It seems that with MRIs, more and more small, previously undetected, breast cancers are discovered. Twenty years ago, the site of my 2nd site of cancer cells would never have been found. I would have had a lumpectomy and then radiation. Would the radiation have killed the 2nd small site? Who knows? Maybe.

So it seems that now with the super-sensitive diagnostic testing, more 2nd cancer sites are discovered. And the protocol, at this point, is that if 2 primary cancers are detected in the same breast, mastectomy is the answer – no matter how small the cancers are.

Because more 2nd cancers are detected, more mastectomies are being done than before. Is this "progress" saving lives, or just generating more surgical business?

It seems like overkill to me. There must be a way to remove small cancers on the same breast without having to remove the whole breast. If we are going to detect earlier and smaller stage cancers, there must be a way to treat them without surgery. However my cousin's husband said that, in this day, I would have a hard time finding a doctor who would risk it.

And then there are the women in my breast cancer support group who elected to remove their healthy breast, and who had mastectomies when only a lumpectomy was required. Perhaps I don't know enough about cancer.

mountains, molehills, and shots in the arm

2007-12-07T01:57:00.001-08:00

Boy, what a great shot in the arm my breast cancer support group was for me last night. They were able to put to rest many of my fears and apprehensions. One woman showed me her "expander" phase breast and I was surprised at how good it looked, scar and all. They all told me that the "drains" (which the whole idea of keeps me awake at night) were not going to be a big deal at all.

I feel like I may be making a mountain out of a molehill here. My sense now is that breast cancer/mastectomy is a lot more frightening for those who haven’t faced it, than for those who have.

I may even learn from these women how to be more gracious with praying.

family and prayer

2007-12-06T11:09:00.000-08:00

The good thing about family is the safe cocoon that it offers a child in this strange phenomenon, “life”. Even with disease and death, the family forms a net of safety so that the child lives confidently and fearlessly, knowing an inherent “goodness” in that which is.

I think that perhaps this safety and reassurance of goodness is what we mean to give each other when we say that we will “pray for” them. As well as the acknowledgement that we are all mysteriously here and in this together.

I would like to run away

2007-12-06T04:52:00.000-08:00

I am confused and not sleeping well. “Worry” seems to be always with me, and I can’t seem to find my way to the more elusive “quiet”.

Yesterday I lost it at the vet’s office. Jubilee had an infection in her paw that needed to be treated. The vet was young and new, and distracted because of an emergency surgery that needed to be done on a dog that had been bitten by a larger dog. She asked me to leave Jubilee for a few hours. When I picked Jubilee up later, a series of blood tests had been done on her (all were normal) and the bill came to $340. In front of everyone in the waiting room, I ranted that I would never bring Jubilee back and that I should have been consulted about the expensive testing before it was done. John told me on the phone that I sounded frazzled and “like my sister”. Jubilee is still limping.

On top of that, people that I barely know are repeatedly sending me “prayer” cards and putting me on their “prayer lists”. This makes me very uncomfortable. For one thing, I have no idea what it means to “pray for” someone. The only thing that I can relate to in my own experience is holding someone in a place of love and concern within myself. The “pray for” wording feels somehow contorted to me, and I do not understand what it means. But I’m trying to let go of that as just a wording peculiarity. What really bothers me is having my name and predicament broadcast on “prayer” billboards and the like. I do not like the attention on me, I feel a need for more privacy, and I don't know how to be gracious about all of this.

I would like to run away somewhere, to another universe, where there is no breast cancer. I would like to disappear.

friends who show the way

2007-12-05T09:34:00.001-08:00

I have been thinking today, about friends who have gone through difficulties, sickness and death, and who have shared and shown me the way.

The above is a photo of Darrell Grayson, taken the day before he was executed last July. His grace and his hope – the very call to be – is gift and given to me.

I think of my breast cancer support group (which meets tomorrow night), and how important those women are to me.

morning meditation (counting down)

2007-12-04T05:00:00.000-08:00

Sometimes I wish that rather than having this extra time before surgery to “process”, I could go ahead and just get it over with.

There is something hanging over these days – an anticipation, a dread, a fear – that is always with me.

I know that it is way out of proportion, but I compare it with how a condemned man must feel when he knows his execution date and time. I watch the calendar, and know that the time is counting down.

I think of the soldiers and civilians who are wounded in war, and then carry and live with their wounds all of their lives.

I wonder about physical woundedness. And yet here I am whole, seemingly healthy, with a body that I mostly love and cherish.

an edible bouquet

2007-12-03T09:36:00.001-08:00

This came today from Susan, my sister-in-law.

choosing

2007-12-03T05:35:00.000-08:00

It’s like I have a choice.

I can acknowledge the worry and fear – and sometimes I have to put all of my fear to word - but I can also choose to let my mind go down another path: a path of quietness. But I have to do certain things to better establish this path. Like little times of yoga. Like reading small parts of my “Book of Hours” through the day. Like taking Jubilee for walk or sweeping the back porch. Like writing to one of my prisoner friends. Like just sitting.

making love

2007-12-02T12:21:00.000-08:00

John and I have been making love more than usual - and this is probably more my idea. I watch our bodies in the early morning light. I watch my body. I wonder how it will be "after". How will I see myself?

the 2nd wave of sadness

2007-12-02T02:17:00.000-08:00

One of the nurses told me that the sadness would come in waves.

This must be my 2nd wave of sadness. It is bigger and deeper than the first, welling up inside me and sometimes spilling over in tears. It is about my particular misfortune – my breast cancer – but it is also about all the misfortunes of life, mine as well as others. It is about natural disasters like tsunamis as well as imperfections and break down of body. Things that happen that are out what seems to be ordinary and that bring suffering.

This is my world and this is my life.

It’s nobody’s fault, but the way things are. I suppose I could get mad at God.

Dr. Rimmer

2007-12-01T05:10:00.000-08:00

I met with Dr. Rimmer yesterday. It was the last time I will meet with him before the surgery. In fact, it was only the 3rd time I have met with him, ever. The first time being when I was just coming in for the first time with a suspect mammogram; the 2nd time after the first biopsy came back positive. I have spoken with him a few times on the phone, though, and he told me that I could come back anytime before the surgery if I felt I needed to, without an appointment.

The office was a bit crowded and harried on a Friday afternoon, but Dr. Rimmer was patient and answered all of my questions. Even though I knew the answers, I needed to hear the answers from him. Again I wanted to know why he couldn’t do the 2 lumpectomies with radiation and again he told me that I would end up with a deformed breast that I would never be happy with. He all but implied that he simply would not do it. I wanted to know if he could preserve the nipple area, and yes, he could, but I would have no feeling there and it is possible that the ductal in situ carcinoma could have spread to that area.

He showed me where and how he would cut across my breast and lymph nodes, and told me that he would use the “skin preserving” technique so that when Dr. Lickstein puts in the “expander”, I will start out with a little mound of a breast, rather than being totally flat chested.

He has a nice style for a man who cuts off women’s breasts.

His hands are warm and he unabashedly touches – touches your breasts, your hands, puts his arm around you. Ordinarily I would find this a bit off-putting, but in this situation I find it somewhat reassuring.

I had been a bit confused about the type of reconstruction I would be having – silicon implants rather than the more complicated “trans-flap” surgery where skin and tissue is moved from the abdomen to the breast. They make an effort to not influence your decision and just give you the facts, but I saw Dr. Rimmer wince when I mentioned the abdominal surgery, and the nurse later told me that she felt the expander/implant technique was a good choice.

Dr. Rimmer says that I am going into the surgery with good prospects – the DISC (ductal in situ carcinoma) is a larger area, but has supposedly not reached the invasive stage; the invasive stage cancer is small. It is possible that the lymph nodes will not have been affected.

Finally, the nurse made the final arrangements with the hospital. The mastectomy will be done at 9:30AM with the plastic surgery phase following at 11AM. Hearing these times made it all a bit more real, like this is really going to happen. I’m still scared but am getting better I think.

Next week I go to get the blood tests, chest x-rays etc. that they need before surgery.

deformity

2007-11-29T12:41:00.000-08:00

When I was first grappling with the idea of having breast cancer and losing a breast, I said to John, “I just don’t like the idea of somebody cutting on me, or of becoming deformed …”

I have been wondering lately about that whole concept of deformity, and why I find it so frightening. I think about carnival freak shows, babies born with extra limbs – and about how these people with abnormalities are ostracized. It is that sense of “not being like everyone else” that is scary – and especially the fear of being shunned.

I think of the lepers of the world, the prisoners, and those who truly have physical deformities.

Here I am, surrounded by supportive and reassuring family and friends as I lose a part of my body that has become diseased, and I talk of deformity. Talk about blowing something way out of proportion.

And yet, that fear of deformity, even having a fake breast, was and is a real and honest part of my feelings surrounding mastectomy.

surgery date and 2nd thoughts

2007-11-28T15:14:00.000-08:00

Today felt very confusing to me. I began to have 2nd thoughts about the type of reconstruction I had chosen. So I began to read some of the literature I have, and I talked to people. In the end, I’m back to where I think I’m ok with the decision to have the mastectomy and go more slowly with the reconstruction decisions.

I’ll wake up without a breast though :-( - but I’m ok with that, I think.

The surgery is scheduled for Monday, December 17th.

Dr. Rimmer is the surgeon,

...and Dr. Lickstein is the plastic surgeon.

I feel that they are both very competent and compassionate doctors.

the plastic surgeon

2007-11-27T12:32:00.000-08:00

Despite the fact that I still can’t read the mounds of literature that I’ve been given about breast cancer and reconstruction, I think that I’m getting a little more courageous about this whole ordeal :-).

Today I saw the plastic surgeon, Dr. Lichstein. He’s a sort of nerdy kind of guy, but very likable. He comes with very good recommendations from my breast cancer support group.

There are lots of options for reconstruction - silicon implant, saline implant, taking fat from the belly (and getting a simultaneous tummy tuck, which I could use) – each with its own advantages and disadvantages.

For now, Dr. L says, the most important thing that I do is treat the cancer, that I can gradually make my reconstruction choices.

Since the idea of a 7-hour surgery (and 4-5 days in the hospital) doesn’t appeal to me, I decided to just go with the mastectomy for now. After Dr. Rimmer removes the breast, Dr. L will put in an “expander” – which will gradually be filled with saline to stretch my skin for an implant (saline or silicon or fat from my tummy). After 3-6 months Dr. L will do the implant surgery, lifting the other breast to match the fake one.

They showed me photos. The final products all looked great. The expander stage looks very weird.

They said that I would have to deal with “drains” for 7-10 days after the surgery because the body tries to fill in empty cavities with fluid. But that it wasn’t going to be as bad as it sounds.

The cancer treatment (chemo, radiation, etc.) will not be determined until after a pathologist examines the removed breast and lymph nodes.

God, I can’t believe I wrote all that. It does sound gruesome. Dr. L's office is now coordinating with Dr. Rimmer’s office for a surgery date, which he says could be next week, but will be no later than 3 weeks from now.

the gift of others

2007-11-27T00:53:00.001-08:00

Sometimes it is only in the person of another that I can see my path – a way for me. It's not really in what the person says or does, but rather something in how they are. I need to see this up-close and first hand. It's almost like a spark of something (hope?) that can travel from one person to another.

In the women I met at the breast cancer support group I can see, at a certain level, how I will be able to get through the surgery and treatment of breast cancer. They share with me their courage.

These last couple of days I have been watching the Carthusian monks filmed in “Into Great Silence”. They show me the way to quietness. I will never be a Carthusian monk – at least in this lifetime – but there is something in their calling that I also know in myself. I needed to see this calling enacted in their persons in order to know how to tap into it in my own life..

It is in quietness that the fear is abated, and I am sleeping much better. I am learning how to hold the quietness.

And then I realize how much John has taken care of me, all my life, in so many ways. For a while I liked to think that I was an “independent” woman, and could manage myself, by myself. Now I can see how silly that all is, and am beginning to see just how dependant I am, and how much we all need and depend on each other.

into great silence

2007-11-25T08:26:00.001-08:00

One of Nancy’s gifts was not a book, but the DVD, “Into Great Silence”.

I have wanted to see the film for a while and, in fact, it was next up on my Netflix cue. But now that I have started watching it, I know that it is a film than I need to own, and watch repeatedly – like prayer.

It is a contemplative film that draws me deep into the mystery of life itself, and leaves me resting in the same Silence as that of the monks.

Especially now, I need to keep my focus on this silence.

The experience of breast cancer is breaking down my old walls of control and visions of “how things are”. When I awaken in the night, I immediately know that things are different now. Life itself is different. I am in a strange (and frightening) land. The old rules no longer apply. And it seems as if I need to discover/uncover a whole new way to be and see. But none of this new way of seeing and being is in my hands.

Silence is the only thing that I have to hold on to.

love

2007-11-24T15:19:00.000-08:00

I’m always a little surprised and overwhelmed with the love that others show me.

Today Nancy brought these gifts by. I know that they are books – but the way that she wraps them is so special as well.

I have this sense that I am not worthy of such love as I am shown by others, that I am not nearly so attentive. What did I ever do to deserve this attention and care?

a funny thing happened at the gym today ...

2007-11-24T15:06:00.000-08:00

A funny thing happened at the gym today.

I am not a serious gym-person. I go every now and then and do some of the machines and some of the weights. Sometimes I do an exercise or yoga/pilates class. If I’m not doing a class, I usually am in and out of there in less than an hour, usually around 45 minutes.

Today, while on the elliptical machine, I kind of lost it. As in, I knew that my head was not working right. I was breathing ok, but my thoughts were jumping around. I felt like I was losing it. My short-term memory was gone, and I couldn’t remember any of my doctors’ names. When I came home John took my blood pressure and it was fine. I wasn’t really panicked, but I couldn’t concentrate, and it was a little scary. I had to just keep busy “doing the next thing”.

Actually, I felt like I was having really profound, insightful and imaginative thoughts, but I couldn’t hold on to them, or reflect on them. And they were jumping around a lot. Like I was tripping or something.

Something similar happened the last time I went to the gym, about 10 days ago, only this time the disorientation lasted longer.

I’m a little more focused now, but I think I’ll stick to just riding my bike and doing yoga at home for awhile.

sadness

2007-11-23T12:05:00.000-08:00

There is an aura of sadness around me now. It is a gentle sadness, that seems to be like a blanket, protecting me.

I know that I will lose my breast in a few days, and I have accepted that. I am sad because I am losing something familiar, something that has been with me for a long time, something that I had assumed would be with me forever.

It is like an early good-bye.

I said to Sebastian that I was beginning to understand that this loss/mourning seems to be at the heart of what we call “living”.

Sometimes I cry a little bit, tears that seem to spill over from this place of sadness.

hope

2007-11-22T00:56:00.000-08:00

What seemed like a good idea yesterday seems like a not so good idea today. Writing the thoughts and feelings surrounding my breast cancer in a public place seems narcissistic, like it is giving to much importance to my dilemma, drawing attention to it. I mean, everybody is going through crises – some a lot more serious and difficult than my own. This is beginning to seem weird.

But the thoughts and feelings continue to emerge in me in the form of a blogpost (of all things), so, for now, I am putting them here.

My friend, Donna, has been in prison for 27 years. She is one of the wisest women that I know. Yesterday I got a letter from her in which she writes:

“… As depressing as this whole ordeal is for you, I hope you realize your situation is not hopeless. And believe it or not, that one small concession can make all the difference in the world. There is a vast sea of possibilities that separates helplessness from hopelessness. Helplessness means, there’s a problem and I cannot fix it. Plus, I realize no one else can fix it either. Hopelessness leads people to suicide and other tragic, irrational actions. Hopelessness causes unbearable grief, and if an individual does not understand the grieving process – and that it is a process – then it is often more than one can deal with. The grieving process, however, ends with acceptance. With acceptance come peace, strength, and courage. People grieve many losses aside from the physical and emotional losses evolving from the death of someone dear. We grieve the loss of a job, a lifestyle, a dream, a belief, ability, and endless other matters that impact our lives through uncontrollable change. There are five stages/steps in the grieving process: denial, anger, bargaining, depression and acceptance.

Beth, I am sorry you must contend with the necessity of losing a breast. I am a lot more optimistic than you are, because I have seen the remarkable difference in the procedure and results, first hands. I also know how fortunate you are to have first-class medical attention and care. Women in here have to wait a year or more, on average, to ever make it to surgery. By then, their chances of survival are greatly reduced to the extent that surgery sometimes becomes impractical. Their situation goes from helpless to hopeless while the powers-that-be haggle over dollars and cents. Ultimately, their health and lives are deemed worthless. I could argue the injustice of this until the cows come home, but it will not improve their outlook, or yours. Life is unfair, and contrary to popular belief, life is not full of promise. There is only one promise life guarantees – and that is hope! Where there is life there is hope! I arrived at that conclusion during my own struggle with hopelessness (after I received my 2033 parole date). That one final conclusion helped me abandon my suicidal quest and risk living again. I now realize there are many things I’d like to do before I die and even if I never get out of prison – there are still many things I can contribute in an effort to better mankind and/or the generations to come …”

I feel sad and scared, but there is something in me that is rising from this bed of sadness and fear. Maybe, like Donna says, this is my struggle for hope, something at the very core of life.

I am almost finished reading William Johnston’s autobiography, “The Mystical Journey”. Besides giving me lots of perspective on Zen and Christian meditation, Fr. Johnston also talks of his lifelong struggle with celibate sexuality – how he repressed his sexuality during the early years of his life, and then how he came to learn to love others within it.

This ability to not repress, not run away, and the ability to hold seemingly opposite and conflicting energies is also part of what I am reaching for.

morning ramblings

2007-11-21T05:12:00.000-08:00

It is important that I be as honest as I can when I write about how things are. And though I am not writing these things for anyone – I am writing for myself – it is somehow important that I put these thought out here, if only for an imaginary you. I have a tendency to present to the world an image of who and how I am that may not exactly jive with what is really going on with me. I can hide behind a mask. I can overly judge how you will react to what I say before I determine what it is that I will say, and I end up fudging the real truth of what’s going on with me to the point where I don’t even know anymore what's going on with me. I think this is called co-dependency in some circles.

It’s not that I want to boldly assert my feelings and my thoughts – but sometimes it is only in writing that I can even figure out what I am thinking or feeling. And it seems important for me to, in some way, integrate this with how I am with others. My outer face.

So – that’s the long story of why I need to write here (and already I’m imagining the reactions of “what an over-analyst!” – jeez – maybe it’s just an inner-critic that needs to be met and dealt with!)

I had too much wine last night.

For awhile now I’ve been telling myself that if I can’t have just one glass of wine, I should just forego the whole thing.

And then I read in this morning’s paper that there is a study indicating that even small amounts of alcohol have been shown to increase incidents of breast cancer in women.

So maybe that is another reason.

I don’t want to evade the reality of what is going on. Sometimes it seems that a little wine helps me to get more in touch with what I am feeling – loosen up, relax, slow down. But there comes a point where the wine becomes a drug, and I know that I am using it to run away.

And I think that I can find my way through breast cancer without having to drink my way through.

The other night my vegan friend, Sharon, was telling me that if I went on a vegan diet, I could reverse the cancer. I’m not sure that, at this point, I would want to count on it, but it does sound like an interesting change in lifestyle that might prevent new cancers from forming. But I need for Sharon to move in for a week to teach me how to cook and eat vegan!

prayer

2007-11-20T05:19:00.001-08:00

I am hesitant to write about prayer because I have such a strong aversion to religiosity. The truth is that, since I was very young, I have been strongly attracted to silent, solitary prayer. As a child, I loved the silent and dark, empty Churches. When the nuns would talk about “vocations”, it was the cloistered Carmelites that attracted me.

Even though my life has not been outwardly “religious” – I am a rebellious “Catholic” – my inner life has always been preoccupied with prayer. My reading has centered around contemplative writers – Merton, Hammarskjöld, the Cloud of Unknowing, Chuang Tzu …

And now. These days when everything seems a bit dazed, different, distracted – I hear/feel clearly the call the prayer. In some ways, it seems as if this “illness” (can I even call it that? I’m not really sick, it’s more like an alarm or something) is a door leading and helping me toward a more simple and easy and nothing-but-prayer way of living.

I have pretty much let go of all of my computer clients until the end of the year, when I am through the surgery and hopefully recovered. Without the stress of “having to work”, my days open up to me to basically do whatever I want. And what I want to do is what I’ve always wanted to do – pray. So I begin to structure my day more like a monk, with prayer the first thing in the morning, and at least once sometime during the day, and then at bedtime. I use 2 books to help – Merton’s “Book of Hours” and a Benedictine Book of Hours – and I only read one short reading from each book per sitting. More than that and I seem to turn the time into “reading” rather than “praying”.

Then I sit. I am just quiet. I let myself go to the deep place in myself where I know God’s presence. I don’t know how long I do this – sometimes for longer times, sometimes for shorter times. I alternate these times of sitting with some simple yoga stretches.

And then I’m ok. And I know that everything will be ok. All I have to do is be quiet, and remember to pray.

beginning thoughts on cancer

2007-11-19T07:16:00.000-08:00

It is not easy for me to grasp “cancer” – the concept or the disease. I don’t feel sick, and yet I have cancer. It is only when I read the pathology reports that I begin to get some sense that there is something going on in my body that is alarming.

The cells don’t look right, with nuclei that are high grade, and micropapillary architecture showing frequent central necrosis. At the building block level, something is out of whack. Cancer is like an invader, and yet these are my cells that have begun acting differently and turned into something else.

When I first heard that cancer cells had been detected in my body, I thought that I was sort of like a tree with something else growing up the side of it, and eventually it would kill the tree if it were not cut off. Now I feel a little differently. The cancer feels more like it came from within me. Not that my environment – and all the hormone and pesticide laced food – does not play a part. It’s just that I don’t feel myself separate from my environment.

My environment and I are both the same life (if that makes any sense). I cannot hold myself apart from the world I live in, or protect myself from it. We are one.

photographing my breasts

2007-11-18T14:25:00.001-08:00

I had John take a photo of my breasts today. Outside by the pool. I don’t know why I’m so attached to them. I’m 57 years old, and my breasts do look like old lady breasts. They have fallen. The one on the right is bruised all over and distorted from the biopsies that they have done.

And yet I still find something beautiful in the roundedness, and the balance.

fear

2007-11-18T00:34:00.000-08:00

I am trying to be strong and positive and brave. But I am also afraid - terrified - like the breastless girl running from napalm.

I am afraid of the surgery and I am afraid of the cancer.

The dark unknown. Which is behind me, right on my heels.

tiredness and love

2007-11-17T16:57:00.000-08:00

I feel especially tired today, and a little sad. I’m not sleeping well, and the tiredness seems to carry over from day to day.

I visited Donna, my prisoner friend, today in Fort Lauderdale. The prison ambience – mothers with children, fences, guards – though somewhat less harsh than at a men’s prison, is still heavy to hold. Then I missed my turn to the turnpike on the way home and had to weave my way thru Fort Lauderdale until I found I95.

I am somewhat overwhelmed at the love that my friends show me in response to my breast cancer. They call me, offer to accompany me to appointments, send me cards and expressions of love. John is especially attentive to me. I wonder at this – I don’t think that I am as attentive to others as they are to me - and I wonder about the people who have no one to care for them.

"I didn't think I looked strange ..."

2007-11-16T17:30:00.000-08:00

“I didn’t think that I looked strange after my mastectomy, I thought I looked like the photo of the Vietnamese girl who was running from the napalm.”

This is what one woman said at the Breast Cancer Support group I went to last night.

The women all were at some stage of Breast Cancer. Some had lost their hair from the chemotherapy. Some were undergoing reconstruction surgery.

I was the only new person. Pre-surgery. I just realized 3 days ago that mastectomy is in my cards. I never in my whole life imagined that I would have breast cancer, or be faced with losing a breast. No one in my family had breast cancer, and it just never occurred to me. It’s like I was unexpectedly dealt the Old Maid from a deck of cards that I didn't know had one.

The women were supportive. They seemed very much like women to me – relational, feeling, nurturing. Like sisters. Like mothers.

Some talked a lot. Some said nothing at all. It was mostly the silent ones that I felt drawn to.

The woman next to me kept leaning toward me with encouraging remarks. Sue, with almost no hair, offered to show me her “Barbie breasts” (no nipples.) I declined. I was too afraid. But they looked good under her clothes. Her plastic surgeon is the same one I will be using.

I feel very grateful to these women, these sisters. I never really knew how to do this “sister-stuff”. Maybe now I will learn.

my breast cancer

2007-11-16T16:34:00.000-08:00

My Breast Cancer.

OK, I’ve said it. I’ve owned it.

It has not even been a month (Oct. 23) since Dr. Mondro (the radiologist) came into the room and said, rather off-handedly, “unfortunately the biopsy came back positive, but the good news is that the cells are still in situ.”

I was a little dazed, but that didn’t seem so bad. This was 2007, and this could probably be taken care of with a simple out-patient surgery. I had had skin cancers like this.

What threw me a little was when she handed me a big Breast Cancer book – somehow it didn’t seem to apply to me.

Then there were the MRIs, and the consultation with the oncologist (Dr. Bertrand) and the surgeon (Dr. Rimmer), and the talk about radiation therapy and hormone therapy. It all seemed so “aggressive”. Wasn’t this supposed to be “beginning stage” breast cancer?

I like my breasts. When I look at them, they look perfect to me. Balanced. And though they are a bit droopy now, they are not too big and not too small. They feel soft to me, comforting. And they are sensitive and like little antennae for me. Sexually, just knowing that they are there makes me feel just a bit turned on. All of this seems connected together to who I am, how I feel, my very passions for life.

I certainly was not ready to give one up, and didn’t even want to go there. I skipped all the chapters of The Breast Book about mastectomy. Just the mention of “drains” and the like scared me.

And then the results of the MRI came back with some “questionable” area in the same breast as the original cancer cells, but in an “opposite quadrant”. Damn MRIs are too sensitive. They pick up anything.

The surgeon, Dr. Rimmer, recommended a sonogram to detect and biopsy this “questionable” area. I wasn’t thrilled with the idea of another needle in my breast, especially when I was still black and blue from the first biopsy. When Dr. Mondro (the radiologist) was not able to see the area with ultrasound, I was relieved. Not only was the needle not going in, but I presumed that this meant nothing was there.

Wrong.

It only meant that now I had to have an MRI- guided biopsy. The day before the MRI-guided biopsy, the MRI doctor - Dr. Mullins - showed me the "questionable" area on a computer screen. It looked like a little silver diamond on the screen, shiny. It certainly didn’t look vague.

I asked what this could be besides cancer. Oh, maybe a fibroid cyst, Dr. Mullins said, a little node of denseness. That felt right. I had little bumps of things all over my body that were not cancer. Maybe this was just one of those.

The day that Dr. Mullins called with the results of the MRI-guided biopsy I was nervous. It seemed like every test I had had lately had come back with something “positive”. I paced the floor, put away the clothes.

I liked Dr. Mullins. I had made sure he knew that I didn’t like the idea of needles going into my breast and wanted to make sure he gave me enough sedative that I wouldn’t feel it. On the morning of the biopsy he came in and said “Oh yes, you’re the woman who doesn’t want any drugs, so I’ve brought a bullet for you to bite “, and we had laughed. He’d done a good job with the biopsy. Clean, he said. We just went in, got the cells, and got out.

Dr. Mullins was sweet the way he told me that the cells were cancerous. Invasive. But the area was small.

Maybe you got it all with the biopsy, I said. Maybe, he said.

I already knew that Dr. Rimmer was going to recommend a mastectomy when he called the next day. Still, I tried to talk him out of it. Why not 2 lumpectomies? I asked. I mean, they are really small.

Dr. Rimmer says that 2 lumpectomies will leave me with a very deformed breast, that I would never be happy with it. He says that they can reconstruct the breast during the same surgery that they remove it.

So this past week I’ve been trying to get my mind around losing my right breast – and having a fake breast. I haven’t even gotten to the part of having cancer cells yet.

Last night I went to a Breast Cancer Support group. One woman suggested keeping a journal, writing about it all. So that is what this blog is all about. Writing down my feelings. Every day as I make my way through breast cancer.

So far it seems like every day has been different. Sometimes I seem ok; sometimes I seem totally whacked out.

Some tips on lifestyle to prevent cancer

2007-10-03T09:38:00.000-07:00

Some tips on lifestyle to prevent cancer.

Copied and pasted from a forwarded mail.

Cancer News from John Hopkins.

AFTER YEARS OF TELLING PEOPLE CHEMOTHERAPY IS THE ONLY WAY TO TRY (TRY THE KEY WORD) AND ELIMINATE CANCER, JOHN HOPKINS IS FINALLY STARTING TO TELL YOU THERE IS AN ALTERNATIVE WAY .

Cancer Update from John Hopkins:

1. Every person has cancer cells in the body. These cancer cells do not show up in the standard tests until they have multiplied to a few billion. When doctors tell cancer patients that there are no more cancer cells in their bodies after treatment, it just means the tests are unable to detect the cancer cells because they have not reached the detectable size.

2. Cancer cells occur between 6 to more than 10 times in a person's lifetime.

3. When the person's immune system is strong the cancer cells will be destroyed and prevented from multiplying and forming tumours.

4. When a person has cancer it indicates the person has multiple nutritional deficiencies. These could be due to genetic, environmental, food and lifestyle factors.

5. To overcome the multiple nutritional deficiencies, changing diet and including supplements will strengthen the immune system.

6. Chemotherapy involves poisoning the rapidly-growing cancer cells and also destroys rapidly-growing healthy cells in the bone marrow, gastro-intestinal tract etc, and can cause organ damage, like liver, kidneys, heart, lungs etc.

7. Radiation while destroying cancer cells also burns, scars and damages healthy cells, tissues and organs.

8. Initial treatment with chemotherapy and radiation will often reduce tumor size. However prolonged use of chemotherapy and radiation do not result in more tumor destruction.

9. When the body has too much toxic burden from chemotherapy and radiation the immune system is either compromised or destroyed, hence the person can succumb to various kinds of infections and complications.

10. Chemotherapy and radiation can cause cancer cells to mutate and become resistant and difficult to destroy. Surgery can also cause cancer cells to spread to other sites.

11. An effective way to battle cancer is to starve the cancer cells by not feeding it with the foods it needs to multiply.

CANCER CELLS FEED ON:

a. Sugar is a cancer-feeder. By cutting off sugar it cuts off one important food supply to the cancer cells. Sugar substitutes like NutraSweet, Equal, Spoonful, etc are made with Aspartame and it is harmful. A better natural substitute would be Manuka honey or molasses but only in very small amounts. Table salt has a chemical added to make it white in colour. Better alternative is Bragg's aminos or sea salt.

b. Milk causes the body to produce mucus, especially in the gastro-intestinal tract. Cancer feeds on mucus. By cutting off milk and substituting with unsweetened soya milk cancer cells are being starved.

c. Cancer cells thrive in an acid environment. A meat-based diet is acidic and it is best to eat fish, and a little chicken rather than beef or pork. Meat also contains livestock antibiotics, growth hormones and parasites, which are all harmful, especially to people with cancer.

d. A diet made of 80% fresh vegetables and juice, whole grains, seeds, nuts and a little fruits help put the body into an alkaline environment. About 20% can be from cooked food including beans. Fresh vegetable juices provide live enzymes that are easily absorbed and reach down to cellular levels within 15 minutes to nourish and enhance growth of healthy cells. To obtain live enzymes for building healthy cells try and drink fresh vegetable juice (most vegetables including bean sprouts) and eat some raw vegetables 2 or 3 times a day. Enzymes are destroyed at temperatures of 104 degrees F (40 degrees C).

e. Avoid coffee, tea, and chocolate, which have high caffeine. Green tea is a better alternative and has cancer-fighting properties. Water- best to drink purified water, or filtered, to avoid known toxins and heavy metals in tap water. Distilled water is acidic, avoid it.

12. Meat protein is difficult to digest and requires a lot of digestive enzymes. Undigested meat remaining in the intestines becomes putrified and leads to more toxic buildup.

13. Cancer cell walls have a tough protein covering. By refraining from or eating less meat it frees more enzymes to attack the protein walls of cancer cells and allows the body's killer cells to destroy the cancer cells.

14. Some supplements build up the immune system (IP6, Florssence, Essiac, anti-oxidants, vitamins, minerals, EFAs etc.) to enable the body's own killer cells to destroy cancer cells. Other supplements like vitamin E are known to cause apoptosis, or programmed cell death, the body's normal method of disposing of damaged, unwanted, or unneeded cells.

15. Cancer is a disease of the mind, body, and spirit. A proactive and positive spirit will help the cancer warrior be a survivor. Anger, un forgiveness and bitterness put the body into a stressful and acidic environment. Learn to have a loving and forgiving spirit. Learn to relax and enjoy life.

16. Cancer cells cannot thrive in an oxygenated environment. Exercising daily, and deep breathing help to get more oxygen down to the cellular level. Oxygen therapy is another means employed to destroy cancer cells.

CANCER UPDATE FROM JOHN HOPKINS HOSPITAL , U. S.

1. No plastic containers in micro.

2. No water bottles in freezer.

3. No plastic wrap in microwave.Johns Hopkins has recently sent this out in its newsletters. This information is being circulated at Walter Reed Army Medical Center as well. Dioxin chemicals causes cancer, especially breast cancer. Dioxins are highly poisonous to the cells of our bodies.

Don't freeze your plastic bottles with water in them as this releases dioxins from the plastic. Recently, Dr. Edward Fujimoto, Wellness Program Manager at Castle Hospital was on a TV program to explain this health hazard. He talked about dioxins and how bad they are for us. He said that we should not be heating our food in the microwave using plastic containers. This especially applies to foods that contain fat. He said that the combination of fat, high heat, and plastics releases dioxin into the food and ultimately into the cells of the body. Instead, he recommends using glass, such as CorningWare, Pyrex or ceramic containers for heating food. You get the same results, only without the dioxin. So such things as TV dinners, instant ramen and soups, etc., should be removed from the container and heated in something else. Paper isn't bad but you don't know what is in the paper.It's just safer to use tempered glass, Corning Ware, etc. He reminded us that a while ago some of the fast food restaurants moved away from the foam containers to paper. The dioxin problem is one of the reasons. Also, he pointed out that plastic wrap, such as Saran, is just as dangerous when placed over foods to be cooked in the microwave. As the food is nuked, the high heat causes poisonous toxins to actually melt out of the plastic wrap and drip into the food. Cover food with a paper towel instead.