Archives for posts with tag: coping with breast cancer

Last week I had one clinic day (Monday), followed by six days of painting and redecorating my private practice office. My daughter was also gone on a band trip during this time. So this week has been about transitioning back to my normal roles and routines. It was really hard, much harder than I expected. My brain was fragmented for several days.

Even more distressing was the fact that I felt really anxious and unsure of myself outside of work. This was particularly difficult socially, especially with my cyber friends. Cyber relationships do not have the same familiar codes and handshakes on which I gauge other social interactions. My cyber buddy, Greg Smith, wrote about the limitations that electronic communication put on his “Spidey Senses” in navigating his interactions with patients via Skype. He is an emergency department psychiatrist who practices telehealth in his job to provide consultation to patients who live far away from services. (As an aside, although my psychology practice is in Seattle, a “little big city”, the majority of my training was done in rural areas. Access to care is a major big deal.)

Earlier in the week, I found myself anxious that I’d written the wrong thing to one cyber friend or worrying that another cyber friend thought that I was a creepy stalker because a compliment I’d paid to her did not seem to go over in the way I had intended. I worried that I was being too flirtatious with cyber friends, male and female. I thought about what I might do to repair relationships that may have been damaged by my electronic awkwardness.

I have not felt that way for a VERY long time. What the heck is going on? I’ve had cyber buddies for awhile now and although I am sometimes frustrated by the limitations of this form of communication, there are benefits as well. When I write, I can communicate without interruption, for one. That is a major gift to me in this time of my life when some level of introspection is needed for health and healing. But I do miss the body language, tone of voice, or even hearing any of my cyber buddy voices. And I know in my own communications, the parts of me communicated beyond the words that I write or by my smile in the photos I post, are lost.

Last week, I dredged into some painful past experiences to write the post, Predator, about my own experiences with sexual harassment as a teen and how they relate to the sexualization of breast cancer.  If you’ve read the post, you know that the experiences I wrote about are very typical for women my age and most of the experiences still occur with girls and women today. The post resonated with a lot of women and I was very glad to have written it. I also suspected that it would help me integrate the vulnerability I have felt as a breast cancer patient to another time in my life when I felt scared and vulnerable.

I knew this would be a hard post to write and even waiting until my mother went on vacation to post it. I know that by the time she comes back home and reads it, I would have processed through the hard emotions and she would not have to worry about me so much. She had already suggested to me a couple of posts prior that I needed to take a break and write something light and/or funny. It’s hard to see one’s child in pain, even when she is 47 years-old.

Writing the post was harder than I expected and was like taking a time machine back to the worst parts of my adolescence with the extra layers of breast cancer and being a mother of a vulnerable teen girl.

Actually, let me put it this way. It was like being 16 again.

There are folks that rhapsodize about their youth and feel that they have lost something. Don’t get me wrong because I had a generally happy childhood and adolescence, but I am happy where I am. I have never had a stronger combination of individual, familial, and professional satisfaction than I have experienced in middle age. Emotionally, I feel so much more solid, as well. And this is not because my life has been easy in middle age. It is a benefit of maturity. My parents are very happy people who love their family, friends, and each other. They help me look forward to my future, should I be so lucky to live a long life.

Back to being 16 again. Do you all remember what your teens years were like with your peers? I don’t know about you, but although I had good friendships, they involved a frenzy of unnecessary activity. Worrying, “Did I say the right thing?” “Should I have said that?” (That was a popular one for me. I am loud and chatty.) “Should I have looked at him that way?” “Did I hurt her feelings?” Then I would go and try to repair things. Later in my life, a good friend would characterize my repair attempts as, “Elizabeth, you flail.” Now she has more of a passive, slug like coping style but in respect to the situation she was describing, I was totally and completely flailing when I should have been leaving things alone.

These days, I typically feel solid as a communicator. There are parts of me that can be perceived as being “too much” (see “loud and chatty”, above). This was particularly true in the past. I have learned to be myself with confidence and I think part of what bothered people about the big parts of my personality was the anxiety and lack of confidence that were sometimes underneath. Now I get a lot of compliments about my loud laugh and I can tell from patients and their parents that for the most part, they enjoy the fact that I am a happy person, eager to help, and a lover of my fellow human beings, especially the small ones. But I also know when I need to scale things back and tone them down. It’s a dance of a sort and in my profession, I am usually extremely good at it.

To be 16 again, was no fun. I saw Rebecca, my psychologist yesterday. The session may have only lasted an hour but by the time I left, I’d aged 31 years.

So cyber and face-to-face buddies, I am ready to play like a grown-up again.

Photo by Aaron Eidinger, 1983-ish. I am 17 or 18 in the photo.

Photo by Aaron Eidinger, 1983-ish. I am 17 or 18 in the photo.

 

 

I grew up in a loving household, in a good neighborhood, and went to good public schools. Despite this, as an adolescent girl, I became quickly and keenly aware that part of being female was being prey to boys and men.

I went to middle school in the late 70’s. Like many teens, I had an ugly duckling/swan transformation. As a 7th grader, I was considered to be rather homely. Boys fake-flirted with me to humiliate me. They treated me like I was stupid. By 8th grade, I had undergone a bunch of pubertal changes, lost weight, grew several inches, and got fashionable. But it didn’t matter whether I was pretty or not. That school was an incredibly humiliating place for a girl. Walking the hallways was like running a gauntlet because boys hands would be groping everywhere and I mean everywhere in what seemed to be full view of teachers. Not one of the adults did a damn thing about it.

The summer after 8th grade, we went to a Seafair (Seattle’s summer-long festival) parade. One of the Seafair clowns, a GROWN ASS MAN, picked me out of the crowd (did I mention I had just finished the 8th grade?) and gave me a sloppy kiss full on the lips. I tried to make a joke to regain my footing and recover from the confusion and humiliation. He made some mildly sexual comment. That was my first kiss, by the way.

When I was a high school freshman, I often walked the mile between my bus stop and home by myself. There were other kids in the neighborhood so I don’t know exactly why I walked alone so frequently, but I did. On more than one occasion, a car would pass, come to a halt in front of me, and open the door to the passenger side of the car. They were strange men waiting for me to get into their cars with them like this would be something I would want to do. I would freeze and I remember being afraid to walk past that open door. After a bit the door would close and the car would drive off.

When I was in the 10th grade my history teacher, who was at the time THE SAME AGE AS MY FATHER, engaged in some super creepy behavior with me. Whenever we had independent work time, he would sit on top of the desk in front of me and stare at me. Occasionally, he would try to start up a conversation. I hate to be crass but feel compelled to point out that when he was seated this way, his crotch was right at my eye level. I argued with him about one of my grades once and he looked a little desperate, as if he were somehow losing me. He put his hand on my shoulder and told me that he loved me. I told two teachers and a guidance counselor about this. I was told that I had misunderstood what was fatherly concern. My peers teased me and told me that I thought everyone was in love with me. I felt ashamed and didn’t tell my mother about this or any of the other middle school and high school incidents. I would learn later in my life that my mother would have likely kicked some ass and taken names on my behalf. That’s because my mom did kick ass and take names on my behalf but that’s an incident that I’d rather keep private at this time in my life.

These events were creepy and felt clearly wrong to me. But there were many other experiences with peers that were far more confusing. Some of my male peers could be disgusting one moment and sweet another moment. I dated very little in high school but I did have one little “fling” at music camp when I was 15 years old. The boy was smart, funny, and at times, sweet. At one point he characterized the appearance of my legs as “good for spreading.” I can’t remember the context of this comment except that there were other kids around when he said it. I made out with him anyway, in the kind of barely PG-rated way that a 15 year-old girl “good Catholic girl” would do.

This is the world of females, when being sexually desired is mixed with degradation. And I would clarify that it is the world of straight females but even non-heterosexual girls and women are subjected to expectation from many boys and men that they exist for male pleasure and domination. What a way to tarnish healthy sexual development. What a way to make it feel wrong and dirty.

Why do I tell you about my life experience? Is it because it is so unusual? No, I describe my experiences because I think they are close to the typical female experience. Actually, my experiences may arguably be better than the typical female experience. Tellingly, I took myself off of the dating market until college by having crushes on boys so shy they’d never ask me out or boys who I would later learn, were gay. And I went to a high school where being a smart, outspoken girl meant a death knell to dating. I kept my head in the books. I decided when I was 12 years old that I wanted to get a Ph.D. I was lucky enough to have academic skills and support that I could leverage, to build this future for myself.

Last week, I learned that Larry Flynt and his “gentleman’s club” put on an event called “Flight of the Ta-Tas”, a topless skydiving event to benefit Living Beyond Breast Cancer (LBBC), an organization devoted to women and men who have had breast cancer and later developed metastatic cancer. As it turns out, LBBC’s logo was used to promote the event without their permission. They did not sponsor the event. To read more about this, Knot Telling wrote an excellent series of posts about it as well as communicating directly with LBBC about it.

But let’s back up a second to Larry Flynt, the publisher of Hustler Magazine. The first time I learned about this magazine was when I saw this 1978 cover.

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But look at Larry Flynt’s quote on the side, “We will no longer hang women up like pieces of meat.”

Oh wow, Larry Flynt was speaking up for women. He was trying to help! You buying this because I’m sure not. When one looks at the context of this statement, the context of all of the degrading photos of women in Hustler not to mention the juxtaposition of this quote with an image of a woman in a meat grinder, the real message is as clear as day.

Sexism has long been protected by ignoring context. That is why I’ve told you about aspects of my life. And no, not all males are exploitative of women. And not all women allow themselves to be exploited. I am talking about culture, the group. And as a group, girls and women are subjected to sexism and it hurts.

Yes, I can see a specific instance where going topless skydiving might be a positive experience. But done within the context of the sexism that pervades our culture as well as the culture that trivializes and sexualizes breast cancer because it involves “boobs”, “The Flight of the Ta-Ta’s” does more harm to women and girls than it does to help by raising money for a worthwhile cause. A lot of people may think that I’m making too much out of this, wasting my time and energy. I mean LBBC would get a big check if they chose to accept it, right? Let me ask you this. Would the same rationale apply to a black face/minstrel show to raise money for the NAACP?

Larry Flynt, I’m not taking the candy you offer me to get into your car. Keep your money. We aren’t going to sell ourselves, other women, or our daughters.

I’ve written a couple of posts lately about how much things cost ranging from Botox to Lupron to high school year books. My last post was short, a bit flip, and on the humorous side. Shortly after I wrote it, I read this amazing post on Not Down or Out. I complimented Cheryl on her post and much to my surprise, she said it had been partially prompted by my “what things cost”-themed posts!

I’m not saying that I’m never deep because I know that’s not true. But I threw off those posts about costs and didn’t really think about them that deeply. So I started thinking about costs a bit more, relating them to my own cancer experience as well as of those about which I’ve read.

Breast cancer treatment costs a lot. We lose things we would have preferred to keep such as money, time, a sense of safety, taking our health for granted, relationships, a brain that works properly, and last but not least, body parts. We gain things we’d rather not have like nausea, fatigue, weight, neuropathy, hot flashes, aches and pains, and grief. Everybody’s experience is a bit different and for each individual, the experience can change over time.

Putting aside the fact in our lives as tainted test tubes, we don’t know for sure whether each ache or pain or other side effect is really due to cancer treatment. (Okay, I know some of them are pretty obvious, but generally speaking, we don’t always know.) But we do know our current day to day experience and what we like and don’t like about it. And a good number of things that we know about are costs of having cancer and having been treated for cancer.

What we don’t know are the costs of the roads we have not taken. Those of us who had surgery for DCIS will never know if left untreated, whether it would have become invasive or not. And those of use with early stage invasive cancer, don’t know what our outcomes would be if we’d foregone all or a portion of treatment. Finally, those of us with metastatic disease will never know if we chose the right balance between strategies to extend life verses those that preserve quality of life.

Instead, we must make decisions based on our understanding of research on assessment and treatment of our particular diseases, our other risk and protective factors, our personalities, what is important to each of us, and what is not important to each of us. And we must try to make well-reasoned decisions, accounting for all of these factors, while under incredible life stress. Not to mention the fact that we all have people who love us and depend on us. There are costs to family members and friends. As my friend Nancy says, “This disease has tentacles.”

And how many assessment and treatment decisions have each of us made in our experience with cancer? Tons, right? This means there are many paths not traveled. To really understand the costs of our decisions, we would need to be able to live many lives, each based on a different set of decisions.

We’ll never really know because each of us have just one life to live. I often write about my own decisions, “I made the best decisions I could based on the information I had at the time.” It may sound kind of nerdy but it frees me from a good deal of “what if” kind of thinking. I try not to dwell on the costs of the roads I didn’t take. I will never know what they are and to do so would have me walking in circles instead of pursuing the path I chose.

Before I go into today’s post, I have an announcement.

Elvis lives! My ‘Velvet Elvis’ water iris started blooming today.

20130526_100228

Isn’t he pretty?

Okay, back to the main topic. By “Dirty Harriet”, I refer to myself. I have become a vigilante in search of justice, justice against the weeds that encroached upon my garden during the surgery years.

What weed could be so bad that it would inspire an organic gardener and peace loving person like myself to seek vengeance?

It’s what my neighbor calls, “the worst weed of all.” It is lawn grass.

I would much rather have flowers than lawn so most of my front yard is garden rather than grass. But there is a strip of grass on the west side of the house that remained and vexed me all through last summer when I couldn’t weed, continued in the fall, when I still couldn’t weed, and just laughed at me during the early spring right after my TRAM surgery.

But, like Arnold, “I’m baaack.” (Oops, wrong movie reference.) I can lift, I can dig, and after endless furniture shopping for my new office, I had tons of cardboard boxes.

Behold my handiwork! I put down cardboard over all of the remaining grass and put down a cedar mulch path. Tomorrow, I will lay down compost and mulch to build a planting area for shrubs. I won’t plant anything back there until next year, to give the card board a chance to work on the grass underneath.

Planting bed in progress.

Planting bed in progress.

 

"Follow the Cedar Bark Road, follow the Cedar Bark Road."

“Follow the Cedar Bark Road, follow the Cedar Bark Road.”

Velvet Elvis approves of the changes and said, “Thank you verra much.”

 

 

 

 

 

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I have such wonderful friends and family, some of whom came to our house yesterday for a weeding party.

What is a weeding party, you ask? Basically, it was a way for me to ask for help with my yard. Repeated surgeries on my right side had resulted in a year’s worth of neglect of my yard by me. My dear neighbor, Deana has helped a lot, especially with deadheading. But there were two big projects in the front garden that were getting me down: (1) The encroachment of grass on the west side of the yard and (2) the overtaking of an entire section of garden by a very pesky and intrusive wire weed. It was so cute in it’s little pot when I bought it as a ground cover several years ago. Little did I know that it was like a mini form of kudzu, the vine that has been choking off entire trees (and a barn in this photo) in the southeastern U.S.

With our little work crew, we were able to get the job done in about 1 1/2 hours. Then we had food and hung out on the new deck, that John has nearly finished except for staining the wood. The lilacs are in bloom and the scent was wonderful. It was a glorious day.

I had a hard time asking people for this help. But I kept reminding myself that people have kept asking what they could do to help and how much less helpless I feel when there’s something concrete I can do for a loved one in a time of need. It was a beautiful day, a celebration of love and kindness. Plus, the apple pie I made turned out extra pretty. (I heard it tasted good, too but I am not eating wheat these days and didn’t want to do a test drive with a gluten-free crust recipe on company.)

First things first. Is this pie a beauty, or what? The lovely caramelized top was an accident. I had so many apples to use up that I cooked the filling on the stove top before I filled the pie so that it would reduce in volume a little. It's a good thing I did this as my pie dough was not well behaved enough to roll into a full top and bottom crust. The pre-cooking kept the apples from drying out in the oven. Okay, enough about pies; let's move onto the garden.

First things first. Is this pie a beauty, or what? The lovely caramelized top was an accident. I had so many apples to use up that I cooked the filling on the stove top before I filled the pie so that it would reduce in volume a little. It’s a good thing I did this as my pie dough was not well behaved enough to roll into a full top and bottom crust. The pre-cooking kept the apples from drying out in the oven. Okay, enough about pies; let’s move onto the garden.

This is just after I took the first chunk out of the wire weed invasion.

This is just after I took the first chunk out of the wire weed invasion.

1 1/2 hours later and the wire weed is gone! Yay! Most of this work was done by my cousin, Catherine and my husband, John.

1 1/2 hours later and the wire weed is gone! Yay! Most of this work was done by my cousin, Catherine and my husband, John.

We dug up a lot of compost in 1 1/2 hours! Tomorrow it will get picked up by waste management and become part of Seattle's awesome composting program!

We dug up a lot of compost in 1 1/2 hours! Tomorrow it will get picked up by waste management and become part of Seattle’s awesome composting program!

Thanks, Mom, Dad, John, Catherine, Deana, Jennie, and Preben for making my yard feel manageable again. I'm eager to go out again next weekend!

Thanks, Mom, Dad, John, Catherine, Deana, Jennie, and Preben for making my yard feel manageable again.

Okay, I exaggerate slightly. I am still having the occasional hot flash since starting acupuncture. However, I had a Lupron shot last week and usually the hot flashes get much worse right after the shot. This did not happen this time. Further, I am feeling cooler at other times of the day. Even before my breast cancer diagnosis, I was in peri-menopause. I often felt on the warm side. I feel a bit more like I used to before this hormone dropping part of my life.

I am cautiously optimistic. If the trend continues, I may never know for sure if it was a result of the acupuncture or some other reason/s. But that’s okay because a benefit of life as a tainted test tube is that I get to enjoy a positive outcome whether I understand the how’s or why’s behind it or not.

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I remember being in church as a teen listening to a homily by a visiting mission priest and an interesting man. One of the remarks he made in his sermon was some thing like, “The only one you convert when you are missionary is yourself.” It was a thought-provoking statement with I believe some truth in it.

In the spirit of his words, I have taken the Health Activists Writers’ Challenge today to help activate myself. I have been procrastinating about making an appointment for acupuncture. I left a phone message yesterday and today, I made an initial appointment. It is spring break for many schools so the doctor’s schedule is a bit lighter this week. So my initial appointment is tomorrow.

I will let you know how it goes.

Today, I am sitting in the waiting room at the surgical services for the Swedish Cancer Institute. I’ve been here many times before as a patient and I will be here again in the future, as a patient. But today, I am here as a support person. One of our family friends was recently diagnosed with breast cancer. I offered to come to the first surgery consultation with her and her husband.

One of the Health Activist Writer’s Challenge writing prompts is to provide tips to the newly diagnosed. I will use my experience this morning, as well as my recollection of my own thoughts and feelings from my own initial consult last May, to inform future post dedicated to this subject.

But first and foremost, I hope to be helpful in this meeting. This is a scary time in the process, where the “what if'” greatly outweighs the “what is”.

Stay tuned.

Lindbergh High School Reunion '82, '83, '84, '85

Join us this summer for our reunion in Renton, WA!

George Lakoff

George Lakoff has retired as Distinguished Professor of Cognitive Science and Linguistics at the University of California at Berkeley. His newest book "The Neural Mind" is now available.

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