Monday, December 31, 2007

the drain is out!

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


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!

Sunday, December 30, 2007

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

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.

Saturday, December 29, 2007


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

Friday, December 28, 2007

dreams of loss

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.


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.

Thursday, December 27, 2007

broad daylight love

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.

Wednesday, December 26, 2007

wild boars, pain, wierdness and prayer

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.

Tuesday, December 25, 2007

3 days after surgery?

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

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.

Monday, December 24, 2007

Dr. L's new office

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

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.

Saturday, December 15, 2007


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.

Friday, December 14, 2007

before a turning point

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.

Thursday, December 13, 2007


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.

Wednesday, December 12, 2007

the hands of others

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.

Tuesday, December 11, 2007

know this place

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)”.

Monday, December 10, 2007

3rd wave of sadness

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.

Sunday, December 9, 2007

vegans to be?

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

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.

Saturday, December 8, 2007

mastectomies, not a thing of the past ...

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.

Friday, December 7, 2007

mountains, molehills, and shots in the arm

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.

Thursday, December 6, 2007

family and prayer

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

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.

Wednesday, December 5, 2007

friends who show the way

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.

Tuesday, December 4, 2007

morning meditation (counting down)

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.

Monday, December 3, 2007

an edible bouquet

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


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.

Sunday, December 2, 2007

making love

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

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.

Saturday, December 1, 2007

Dr. Rimmer

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.