deformity

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

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

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

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

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

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 ...

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

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

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

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

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

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

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

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

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 ..."

“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

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.