Archives for category: Breast cancer

The last 30 minutes of crazy

November 28, 2014 //

One of my sister-in-law’s hosts Easter each year. She is a competent cook. She is also able to have people in her kitchen while she cooks. I could say that one reason for this is that she has a large kitchen with places for people to sit at a table, out of the way. I could also note that most of the things she makes are not hot and can be made ahead of time and taken out of the refrigerator. I could also point to the fact that she does not make something that requires the making of gravy. But the fact of the matter is that she is able to concentrate on entertaining people and making food all at the same time.

I am not like this. I can talk to people up until about the last 30 min before Thanksgiving dinner is done. Thanksgiving is the holiday that I host. I have done it for all years except one for the past 10 years. Before the last 30 minutes, I feel relaxed and confident. My apron is typically still clean. I am able to avoid burning myself on the oven’s heating element.

And then half of the food is ready and the other half of the food needs to be finished. The turkey is cooked and needs to be lifted out of the pan to rest on a carving plate. Meanwhile, I place the roasting pan on two burners, pour in alcohol to deglaze it, scraping the fond from the bottom of the pan. I add flour (now a gluten-free blend) and turkey fat and stir constantly. It always gums up immediately and the first worry is that the gravy will turn out clumpy. And it will if I don’t keep my head in the game. I add poultry stock, bit by bit, until I start to see a beautiful brown glistening sauce develop. Then I keep adding stock while I am plating vegetables, side dishes, and heating things up at the last minute. I have to work quickly so that the turkey does not rest too long and become cold. When the time comes, I call my husband to the kitchen to carve the turkey while I finish the last 500 details.

If you are a guest and you ask me what you can do to help, I will ask you to please sit down and enjoy yourself. If you ask me during the last 30 minutes, I insist that you sit down and enjoy yourself. My husband and my mom have both gotten into the habit of running interference for me and helping shoo people out of the kitchen. Even if I am not in the last push of frenzy, my kitchen is small and not a good place for people to hang out to visit with one another. My mother knows this because people congregate in her kitchen when she is cooking, standing in front of the stove or the sink, not realizing that they are setting off her rhythm. My husband shoos people out because he has empathy for me and knows how my brain works.

I love to cook but I am a person who cooks in deep thought. I have a hard time socializing and cooking at the same time. Both socializing and cooking are high interest for me and I have a hard time focusing on anything else when I am deeply engaged in one of these activities. So doing both of them is really really hard. As for those that want to come in to help, unless they know exactly what to do and how to do it, delegating is a chore for me. A chef is a boss of a kitchen and has training to do this. I don’t. I am a home cook with a small kitchen. I have a schedule and a list in my head. I am working at full capacity and the wheels are already in motion. This is also why, if you come to my house with a dish that needs tending to or oven space, I will use my powers of reasoning to tell myself that you have probably not considered that all of the burners and all of the oven space have already been accounted for. I will smile tightly and problem-solve. I may think of the time that friends had a potluck and a mutual friend showed up with a grocery bag full of unwashed vegetables and raw tofu and exclaimed, “Look, I brought stir fry!” That story always makes me smile.

I live my life at a certain pace. I try to live a lifestyle that is not only manageable, but healthy. Sometimes I even think I know what I am doing. I feel relaxed and can coordinate the different spheres of my life. And then there are the times when everything happens at once. I need to be in multiple places to do multiple things, all at once. And the consequences for failure are far worse than lumpy gravy.

I am working my best to be the kind of parent my child needs. So is my husband and so is my child. It seems that we get to the frenzy frequently and often without notice. This is the way our lives have been for the past 4 years. Cancer happened in those years, too. The normal real life bumps and reorganizations have occurred, as well. Last week, I learned that my colleagues and I need to find new professional office space. We’ve been in the same place for 10 years. I don’t like moving. It’s a lot of work. We are working to find the least disruptive and expensive solution to the problem.

During these times when I am racing in my life, I find it harder to talk about the details of my life. Not so much because it is emotionally hard but because my brain is working at capacity. I am finding myself in that mode lately. It is easier for me to organize my thoughts in writing than in conversation but even writing has been hard to organize in the past couple of weeks.

I recently wrote that I was looking forward to this week because I would be able to concentrate on cooking an spending time with my family. And I have done just that. Although I awoke this morning fairly pooped out from entertaining, I think it says something that I am finding writing to be easy again.

Simply live.

I am trying.

Tags Breast Cancer, family life, mindfulness, Parenting, stress, Thanksgiving

Categories Breast cancer, Family, Mindfulness, Parenting

I never sang for my mother: Repost

November 22, 2014 //

This is a re-post from 9/20/13, which I wrote (and sang) as a gift for my mom’s birthday. Mom has been fretting about me a bit because I’ve been writing about worry and stress. She is asking me what she can do to help. I am reposting this 1) to remind her that I know that I am resilient even if my life is complicated at this time and 2) to remind her that she has already and continues to do so much for me, just by being herself.

Martha MacKenzie is my wonderful mom. And today is her birthday. In addition to being a mother of six and a wife for nearly 59 years, my mom is a singer. She has a glorious voice. Mom has almost no formal vocal training but comes from a family of musicians, especially singers. Her singing style can best be described as sacred classical. In other words, she is a church singer. Mom has been singing in church choir since she was six years old. Her oldest sister, Gloria, sang for KIRO radio’s Uncle Frank’s Kiddie’s Hour for a number of years, until she was about 12. Mom and her middle sister auditioned for and were accepted into the children’s choir for an opera production in Seattle, starring Metropolitan Opera’s Rise Stevens. Mom still remembers what she was asked to sing for the audition.

Mom was SMART and graduated from high school at age 16, after which she took a music performance class, along with her older sister, Barbara at Seattle University. We have recordings from those times of my mom’s clear soprano and my aunt’s animated mezzo-soprano singing songs from 1950’s musicals. Shortly after, Barbara moved to New York City to try to make it on Broadway. She was an amazing performer but like many talented performers did not make it in the Big Apple. During the Koren war, Mom was in a singing trio with Barbara and their cousin, Betty. They wore glamorous dresses and pulled off those unbelievably dark lip stick shades that were popular in the early 50’s, while performing for the USO.

Mom continued to sing in church choirs all of this time through marriage, rearing six children, and throughout my father’s post-retirement years. She is a member of the St. James’ Cathedral Choir in Seattle. It is a wonderful choir, which has toured Europe singing at noted cathedrals such as Notre Dame in France. They also sang at the Vatican and had an audience with Pope Benedict. My mom likes to tell us how she was trying to hike up the waistband of her support hose just as Pope Benedict walked by.

Wow, Elizabeth your mom sounds great. And you’ve talked about being a musician in your youth. You must have sung. You must have sung for your mother.

Well, it’s complicated. I was in band but did belong to the choir during 7th grade. Our claim to fame was performing, “The Sound of Music” during a middle school JAZZ competition. And no, it wasn’t a jazzy rendition of the song. I don’t know what that teacher was thinking. Then I stopped singing except for a few months during college when my mom convinced me to come to St. James to rehearse for a special community choir mass. (Regular choir members must audition. Soloists are professional opera singers.) I remember singing “A Mighty Fortress” and learning a piece based on Psalm 84 (“Yeah the sparrow hath found a house…”). I learned how to articulate words differently for singing than for speaking. It was a lot of work but was really fun.

So I did a little singing in groups. But NEVER alone in front of people. (Okay, one time five years ago I sang “Goody Goody” for my neighbors Jim and Deana. I’m not sure why I did it.) Not even for my mom except for a few bars of something and even then that was when I was much older, like 35 years old. People, singing in front of people is even more mortifying to me than wearing a swim suit in public! Zoe is the only one I have ever sung to and I sang to her a lot when she was little. I would sing with her now except that she only likes to sing alone. (Annoying teen.)

My mom used to sneak next to the bathroom door to try to hear me sing in the shower. (Watch the comments section, she will deny it!) If we were in church together and standing next to each other, she would sing really quietly so that she could listen to ME. I knew that it was really important to my mom to hear me sing but it was so hard for me to do this and I’m not sure why. She wanted to know if I had “a voice”. I performed frequently as a flutist, despite my nerves, and even performed in two master classes. (A master class is when some well-known musician comes to town and students are selected to get a lesson by that person in front of an audience of a bunch of students and music teachers. I did it twice as a college student.)

My singing anxiety does not just apply to my mom. Objectively, I have a pleasant, untrained alto voice with limited range. I think I could have been an excellent singer if I had trained to do so as I had with the flute. Perhaps the difficulties started as a combination of my perfectionism and the fact that my mom’s eagerness stressed me out a bit. And then as irrational anxieties do, it gathered its own steam from my continued avoidance, and took on a life of its own.

Last July, I wrote about the co-existence of grief and joy as being part of resilience in the post, How Can I Keep from Singing? The post title is the name of one of my favorite Christian hymns. I included the lyrics in the post followed by a little message to my mom asking her to record the hymn so I could post it on this blog. She offered me the deal that she would record it if I sang WITH her. I replied to her comments with a “definite maybe” type reply. I don’t think she ever saw that reply because she hasn’t mentioned the topic even once in the last almost two months. Or perhaps she has been playing it REALLY COOL.

I subsequently decided that I wanted to record the song both for my mom and for myself, to face my fear of public singing. Unlike going on loop de loop roller coasters, I actually enjoy singing quite a bit. It’s the only kind of music I still make. My original vision was for my mom, Zoe, and I to sing one verse apiece and the last verse together. However, Zoe was not at all interested in participating at the time I asked. My mom kept going camping with my dad all summer. I ended up not talking to her about it.

I decided to go solo and a cappella. Actually, a cappella is my favorite for this hymn. Plus, I don’t play piano and ukulele accompaniment by Zoe would probably not sound right.To me, the hymn sounds a little Irish. However, it is American and although there is a somewhat complicated history behind it, the authorship for the music is attributed to a Baptist minister, Robert Wadsworth Lowry. There are a number of different versions of the lyrics. I chose the one that was closest to the one I’ve sung in church many times as a member of the congregation.

I started practicing the song on and off about three weeks ago. Then I had to figure out how to audio record myself. (No way would I have a videotape made. This audio recording is a big enough step as it is.) I finally decided, as time was passing quickly, that I just needed to get it done. So I downloaded a free recording app onto my smartphone and started recording myself. I spent enough time on it to give myself a few tries but not so many as to activate my perfectionism.

Happy Birthday, Mom! Here is a song for you. I am posting it on my blog as my kind of “performance” so you can have a cyber stage mother experience.

How Can I Keep from Singing?

My life goes on in endless song
above earth’s lamentations,
I hear the real, though far-off hymn
that hails a new creation.

Through all the tumult and the strife
I hear it’s music ringing,
It sounds an echo in my soul.
How can I keep from singing?

Oh though the tempest loudly roars,
I hear the truth, it liveth.
Oh though the darkness ’round me close,
songs in the night it giveth.

No storm can shake my inmost calm,
while to that rock I’m clinging.
Since love is lord of heaven and earth
how can I keep from singing?

When tyrants tremble sick with fear
and hear their death knell ringing,
when friends rejoice both far and near
how can I keep from singing?

No storm can shake my inmost calm,
while to that rock I’m clinging.
Since love is lord of heaven and earth
how can I keep from singing?

Tags anxiety, birthday, Family, mothers, music, Parenting, singing

Categories Best of Blog, Breast cancer, Family, Parenting

My birthday wish

November 18, 2014 //

Next Monday is my 49th birthday. My husband asked me what I wanted. I told him, “I don’t want anything. I just want to have dinner with you or something.”

I didn’t really have the emotional energy to think about what I wanted. It’s been a stressful few weeks with lots of worries on top of my normal worries. Sometimes, I worry that I think too much. I think about cancer every day. I think about my husband and daughter every day. I think about the obligations I have to my family, my friends, my job, and to myself. When I am really stressed, as I am at this moment, I worry that I am burdening my friends and family by asking for support, even the support of knowing what I am going through so I don’t have to do it by myself. I am worrying about this right now by sharing this with you. But I also know that when I feel most alone and burdened is the time I need to call on my resources and this means friends.

My friend, Nancy, sent me an email with a parenting resource. Actually, the email was to a bunch of people. Nancy is a dear and she always prefaces any email with, “I hope you are well.” I replied just to her. “I am hanging in there. Things are not going well but I hope you and your family are well.”

I’d never done that before. I got a phone call from her within the hour. I felt a great deal better after we talked. I am very lucky to have such wonderful support in my life.

I’ve been wishing very much to go on a vacation. Then I realize that I’ve just had two vacations, which were wonderful. What I really want is to be away from the stress of the current complications of my life.

Yesterday, I thought to myself, “For my birthday, I want a simple life.”

Immediately, I reflected that this was a fantasy. There are people who have simpler lives than mine, but their lives are complicated. More importantly, I can’t be anyone else, anyway. My life is complicated.

I also started thinking about the fact that I am ending another decade of my life, my forties. I thought, “Wow, a lot has gone on during my 40’s.” But then I started thinking about all of the other decades in my life. Just thinking about all of the changes that occurred for me just as a natural part of growing up during the first two decades made my head spin. A lot happens between the time we are born and the time we hit 20 years old. Holy Cow!

But I still want a vacation and I want a simple life.

And then it dawned on me. Although I am working on Monday, my birthday, I will not go into the office for the rest of the week. I host Thanksgiving every year and to do so, I need cooking time. So I’ve made a habit of only seeing patients on the Monday of Thanksgiving week.

My job after Monday will be to cook and spend time with my family. My husband is taking off the entire week.

I think I will get my birthday wish for a few days and this makes me very happy.

Tags anxiety, Breast Cancer, cooking, holidays, stress

Categories Breast cancer, Mindfulness

Like throwing a dart at a moving car

November 16, 2014 //

As I parked my car at my cancer center last Friday, I thought to myself, ‘This is my last “double-stick Friday”!’ Friday is not a day I see patients so it is the day I typically choose to be a patient. The first stick is a blood draw, which marks the beginning of every medical oncology appointment. Two vials of blood are drawn. Most of the phlebotomists are amazingly adept, which is very important when working with cancer patients, who have veins that are no stranger to the needle. My blood is always drawn on my left arm because I had lymph node removal on my right side. Prior to cancer, I’d had one I.V. placement when giving birth to my daughter 16 years ago and blood draws on a very infrequent basis for some of my annual physicals. Since cancer, my left arm and left hand have been poked and prodded many times a year for blood draws and surgeries. I didn’t even have I.V. chemo and I can tell the difference.

My name was called by an unfamiliar phlebotomist. But they have all been good so I didn’t worry. Then I noticed that it was taking her a very long time to find a vein. I have what they call “difficult” veins. This is why I often get the I.V. line placed in the back of my hand, which by the way, which is kind of ouchie. I could also tell that she was getting nervous. I close my eyes during blood draws because it helps me relax and also because I like to give people privacy to do their job without my staring at their work. I kept feeling the tap tap tapping of her index finger on the inside of my arm and some whispered nervousness. She stuck the needle and then the draw was taking a really long time. Usually, the phlebotomist lets me relax my fist once the needle has been placed. But she didn’t. She kept apologizing and then finally gave up. It wasn’t an adequate blood draw. Then she peered at my arm again, anxiously fretting as she did so. I kept saying, “Don’t worry about it. It’s okay.” She found a vein on the outside of my forearm. This was a new sticking spot.

Again, more time passed than usual. I didn’t mind the extra needle sticking as much as her distress and repeated apologies. Finally, the vials were filled. She fretted over the bruise she knew would be left and in attempt to prevent it, wrapped my arm tightly with medical tape.

I walked upstairs for my oncology appointment with two bandages on my left arm. It would be “triple-stick Friday”. The last stick would be a Lupron shot into my left hip. I have been getting Lupron shots every three months for over two years. Their function is to disrupt the signal from my pituitary gland to my ovaries, which respond by producing progesterone and estrogen. This is a non-surgical way of “shutting down the ovaries” and putting a woman into a near instant and possibly reversible menopause.

And yes, over two years ago, I entered menopause. At the time, Lupron was more commonly used to treat prostate cancer. There was a photo of a smiling middle aged man on the package that held the pre-filled syringe. This struck a few of us in the breast cancer community as funny. The man on the package looked far too happy with his cancer status and the fact that his testes were going to be “shut down” by Lupron.

In three months, the Lupron will wear off and I will wait and see what kind of change ensues. I asked my oncologist what I might expect to happen. It was quickly clear to me as she explained the possible factors (my natural menopause time and the fact that both Lupron and tamoxifen, which I am still taking can cause irreversible menopause) that this was a hard outcome to predict. I said, “Ah, there are many factors involved and they are all DYNAMIC.” Then I covered my eyes and pantomimed throwing a dart. Dr. Rinn replied, “You got it, it’s like throwing a dart at a moving car.”

Like throwing a dart at a moving car.

A great deal of life is like this. My health, parenting a teen.

Mindfulness is like throwing a dart at a moving car with my eyes open.

Wide open.

Tags Breast Cancer, Lupron, mindfulness, Parenting, survivorship

Categories Breast cancer, Mindfulness, Parenting

A dirty slate

November 2, 2014 //

I remember the beginning of my face to face relationship with my daughter. The nurse put her in my arms. “Welcome to the world,” I said as I placed a tender kiss on her forehead. She was an utterly perfect clean slate full of infinite possibility.

As she grew, she changed and so did our relationship. By the time she was a four year old, she was lively, happy, brilliant, confident, independent but connected, and as sweet as could be. “This little girl is going to change the world someday,” I found myself thinking. She was a slate full of infinite happy and healthy positives.

Many parents of challenging teens rhapsodize about their children when they were younger and perhaps even exaggerate. But I can tell you, I was not alone in being in awe of this child and no, I’m not just talking about her loving father, my husband, John.

A major parenting challenge is when the slate of possibilities changes, for some children earlier than others but for most it certainly changes in adolescence. Teens create consequences, short and long-term than they can’t really fully appreciate as they are putting actions in motion. In other words, a common part of growing up is making foolish decisions that could make adulthood much different.

The slate gets dirty. There are still good possibilities but some scary painful possibilities join them. When we love our children and hold their happiness and dreams in our hearts, it can be all too easy to focus on the dirty parts of the slate. Plus, since adolescence is even harder for the teen than the parent, we get the punched in the gut feeling as we watch them struggle through tumultuous times.

I love my girl. She is still brilliant and lively. She is not always happy. She has highs and lows of confidence. She is still super sweet deep down and it is not rare for it to bubble back up to the surface. But to be honest, it is sometimes anxiety-provoking to introduce her to my friends. There is that worry that she will be obnoxious, provocative, anxious, or lacking in manners. She doesn’t really adjust her behavior much based on whether she is with adults or peers. You could be the Queen of England and there would be a chance that she would greet you with a brain rattling belch.

But the truth is that as unpredictable as she can be, adults actually tend to like her. I know that part of the embarrassment on my part, is the common sense that one’s child is the product of parenting. But that’s not all of it. I think that another piece is that she is different than she used to be and as she moves forward, her fate is less and less subject to my influence and protection.

The slate I see when I view my daughter is no longer clean. It is full of known positives, known negatives, and much gray that has not yet been elucidated by time. I look at her and I just don’t know. She is not like the joyful curious 4 year-old for whom my husband and I were the center of the universe. Time can take her away from her wishes and dreams. It can take her away from her own compass of right and wrong. It can take her away from us. It is very scary.

As a breast cancer patient, I have often felt like an adolescent. I have oft written about how the integration of cancer into my identity calls back to the original phase of my identity development during adolescence and early adulthood.

I have been reflecting a lot about my long time relationships and how breast cancer, and how I have changed in response to it, has impacted them. I am not the same person as I was before. And the slate of possibilities for my life has been dirtied by breast cancer. I realize that some have responded to me like a changeable teen. It is not a constant, but there is strain on some of my relationships and it is palpable. With some people I can feel it in my gut, even over two years past diagnosis. I am engendering fear through my association with cancer.

I have made a number of new friends through my breast cancer blogging. Sometimes these friendships seem like a vacation away. There is ease to them at times that is rare in most of my close relationships. I have been very grateful for this but at the same time, it’s seemed a little odd. And I think given how much writing there is in the breast cancer community about the perceived realness of cyber friendships, I believe I am not alone.

One of the reasons that it feels odd is that I feel small but perceptible twinges of disloyalty to my long time friends. Whee! Cyber-friends all the way!! Mostly, I have tried to appreciate and nurture friendships regardless of their origin and focus my efforts on those that are mutually supportive.

It occurred to me today that one of the reasons that new friendships have been so important to me is that none of them knew me before cancer. None of them have had to incorporate this into a pre-existing concept of me. So even though cancer is on my slate, I started with a dirty slate.

During most of my adult life, I have introduced myself to others with a smile and a handshake. I may talk about the weather or about casual pleasantries. As a blogger, I introduce myself to others with my illness. “Hi, I am a cancer patient. I write about personal and painful things. To relieve my anxiety about this, I sometimes make boob jokes.” Despite the the fact that I lead with my disease in this way, I have become part of an amazing community of people, which has led to other connections outside of the community. What a wonderful gift indeed.

Tags adapting to change, adolescence, anxiety, Breast Cancer, breast cancer bloggers, cyberfriendships, Friendship, how cancer changes relationships, mindfulness, Parenting teens

Categories Breast cancer, Family, Mindfulness, Parenting

In my mind

October 27, 2014 //

As you know, I arrived in North Carolina last Wednesday for some much appreciated vacation as well as to attend the first ever reunion of all classes from my clinical psychology Ph.D. program at the University of North Carolina at Chapel Hill. This is the first time I’ve traveled to NC on my own since my dissertation defense in 1997, which was a very short trip since I was still a psychology intern and needed to get back to work.

A five night trip with near total freedom in deciding my itinerary. A trip to a place I love. You know how James Taylor sings, “In my mind I’m going to Carolina”? He’s singing about Chapel Hill. His father was on faculty with the medical school. Chapel Hill is beautiful and song worthy. It is a relatively small city, dominated by a university, which is the oldest public institution of higher learning in the United States.

The first thing I noticed as I was driving from the airport to my friends’ house in Raleigh, was the countryside. The beautiful trees along the highway in their early stages of autumn color change. I noticed a glorious blue sky.

And then I saw them, the telltale V shape birds that pitch and rock when they glide. The turkey vultures were flying over the tree canopy. They are really interesting birds. They don’t live an elegant life. They are not smooth fliers and they scavenge for food instead of heroically gliding and catching fish that glint silver in the sun over the water.. I am not an ecologist but my guess is that despite their bad reputation, they are good for the ecosystem. In any event, with the exception of that apple tree attack in the Wizard of Oz, we don’t fear trees because they grow on decaying matter, some of it from animals, do we?

So one of my goals for this trip was to be mindful of places, people, and experiences. When I do this, I can find myself driving on one of the countless highways in the Raleigh/Durham/Chapel Hill area and waxing romantically about an ugly bird that eats dead animals. This is the power of mindfulness. I say this half-jokingly but it is true. Mindfulness can transform something ugly into something else.

Throughout my mindful trip, I noticed that mindfulness is on the mind of a good number of my North Carolina friends. Doris Ann Price, a lively, artsy, bright and fun woman was the first person I met with on my first full day in NC. Doris Ann and I met in 3-D for the first time last Thursday. She was diagnosed with breast cancer some time ago and made the awful transition to metastatic cancer several years ago. Doris Ann is famous in social media for wearing a button that says, “Cancer Sucks”, a pair of artsy/intellectual glass, her smart black and red wardrobe, and her bright red “Lady Danger” lipstick. (I learned that this is her nickname, something that a friend told M.A.C. Cosmetics about, which resulted in Doris Ann receiving a lifetime supply of their “Lady Danger” lipstick.)

I enjoyed interacting with Doris Ann on Facebook but I didn’t really know her. Contrary to somewhat popular opinion, extroversion is not a super power (nor is introversion an illness, for that matter.). I typically feel at least slightly awkward when meeting new people even when I am very much looking forward to it. Doris Ann and I hit it off right away and had a lovely time together filled with fun and meaningful conversation.

Doris Ann’s cancer has spread to her brain. This is something I knew about her. What I didn’t know it that her voice right now, is a few notches above a whisper because a tumor is pressing against her vocal cords. Her throat is also narrowed, making eating a lot process with very small bites.

Doris Ann was very genuine with me about the challenges that cancer has brought to her life. Despite this, she is a very lively woman who has found a way to keep joy in her life. She told me that she “moves forward” in life until she sees a stop sign. And then at that point, she stops, reflects, problem solves, and regroups. Doris Ann’s health is monitored quite closely by her oncologists and other healthcare providers. She is an upbeat person but certainly not a Pollyanna. Doris Ann is mindful of the seriousness of her health as well as the positives in her life. I admire her emotional strength very much. Plus she was fun and brought me very delicious gluten-free pastries as a gift!

A couple of days later, I found myself at my reunion. I immediately saw someone I knew, Don Baucom, a faculty member who had been the director of clinical training when I was a student. He was greeting people as they arrived. Don is a gracious and kind man with keen intellect and a wonderful sense of humor. He greeted me with a big hug and I felt a little less awkward about going to a party with people I had not seen for a very long time.

I loved graduate school but there was part of it that was like the longest adolescence a person can have that is actually healthy and not just living in your parents’ basement playing videogames, until age 30. The program was supportive but very rigorous and difficult. These were very smart and successful students. We had never had to work so hard to do well in school. So there was insecurity and competition on top of the competition that is part of any academic environment at a major university.

There were only two other people at the reunion from my class and very few from other classes whom I knew all that well. And only two of my professors were there. At one point, I thought, “maybe I’ll leave early.” Then I got my mind out of the past and into the present and proceeded to have a very good time reconnecting with and meeting people.

A couple of particularly lovely things happened. I heard a voice behind me say excitedly, “Elizabeth!” It was April Harris-Britt, who had worked in my dissertation lab, while she was an undergraduate student (I did not work on a professor’s project. I did an independent project, developing and evaluating a parent education program.) April was a wonderful student and I encouraged her to continue in psychology at the graduate level. She did and she entered the Clinical Psychology Ph.D. program after I left. She now has a private practice in Durham, NC.

“I was so excited to see your name on the guest list,” she said as she held my hand. “When I think about why I became a psychologist, I always think of you.” I gave her a hug, a kiss on the cheek, got a little teary and told her how awesome she was and is. Then we caught up on our lives. I saw a photo of her beautiful 4 year old grand-daughter.

This was a very moving encounter. I have found that since I started practicing mindfulness, I don’t feel as awkward showing affection that I genuinely feel. Now, I’m not going around kissing everyone’s cheek. Another part of my mindfulness is trusting that my own guesses as to whether someone would be comfortable with this, are pretty good. After all, knowing people pretty well is part of my job.

There was live bluegrass music at the reunion. They were very good. There was space for dancing but no one was out there dancing. I was sitting next to Sandra Zinn, a lively, brilliant, free spirited woman who graduated a couple of years after me. She said, “No one is dancing!” You know that I love to dance and I’m learning to get past my fears of being bad at partner dancing and just not care that I am bad at it. So I put out my hand and said, “Let’s go!” As I anticipated, Sandra accepted. We made up for lack of skill with enthusiasm, smiles, and giggling. About two minutes into the song, I started feeling self-conscious and told her, “I’m running out of moves.” She said, “It doesn’t matter as long as you keep moving.”

I have done a lot of things this month that would have been hard for me to do in the past. I have had 3 D encounters with three friends whom I met on the internet, one of whom is one of my very closest friends. (The third is the lovely, talented, and interesting Frieda Rosenburg, a retired UNC librarian. We had a marvelous time at the NC Botanical Garden and shopping at A Southern Season.) I have partner danced with two different people on two different occasions.

I am still not good at partner dancing. But it’s much more important to know how to live well than how to dance well. I still get nervous meeting new people or feel awkward in a crowd. But I am learning the difference between real stop signs and fabricated ones like the ones caused by social anxiety, perfectionism, and borrowing trouble from a future I can’t know until it gets here.

The fabricated stop signs are exhausting and when I make them, I miss out on a lot in my life. I don’t know how long my life will be or how many stop signs are coming up. In the meantime, I will live a life as mindful, meaningful, and as genuine as I can.

Doris Ann at Weaver Street Market in Carrboro, NC.

With Frieda Rosenberg at the NC Botanical Garden. Photo by Frieda Rosenberg, 2014.

My dissertation adviser, Joe Lowman with alumna Sandra Zinn. This photo captures each of them perfectly! And do you blame me for asking Sandra to dance?

April and me. Did I mention that I am so very proud of April?

Tags clinical psychology, dancing, Friendship, mentorship, mindfulness, perfectionism, social anxiety, unrelenting standards

Categories Breast cancer, Mindfulness

Ta ta’s, my ass

October 17, 2014 //

As you know I am a child/adolescent psychologist with a private practice. A few years back, I got a voicemail from one of the local news stations asking me if I was interested in writing a parenting column for the health section of their website. I returned the call and listened to the description of the webpage. I also looked at it online while on the phone, at the man’s suggestion.

Then he said it. “So, we want to partner with you financially to set up your parenting column.”

I said, “Wait a minute. You’re selling advertising.”

After I confirmed this to be the case, I continued, “Look, I run a business. There was no reason for you to hide the fact that you are selling advertisements. Businesses advertise. But I need to tell you something. Psychologists are ethically bound to be honest in how we represent ourselves, our education, the methods we use, how much we charge, and what are intentions are. If you want to engage with us, you need to be honest.”

We ended the conversation awkwardly and I suspect he may have even thought of my emphatic assertiveness in an extreme unfavorable light, a response with which I have become accustomed over the years.

One of my friends is a professor back east. She is a cancer researcher and does basic work on the metastatic process. She says that the power and influence of breast cancer research advocates is discussed by her colleagues. It is reassuring to hear that we have a voice and influence.

But because of this, we are ripe for exploitation. I was contacted earlier in this week by someone who was representing an organization that purportedly raised breast cancer awareness and was raising money. They asked if I would be wiling to be featured on their website. I did a little quick Google search and discovered that there was a business behind the group. The purpose was to promote a particular panel of medical tests to guide breast cancer treatment decisions. Having benefited from the information provided by oncotype testing, I understand the benefit of such tests. But why not inform me of the real purpose of the group? Consequently, I declined and further noted that I was uncomfortable with the lack of up front disclosure.

It was a bit of a surprise to me that my modest blog might be seen as a resource for free advertising of a medical test. But it’s easy to find breast cancer blogs and easy to send each person a form letter email invitation. The breast cancer blogging community, as a whole, communicates information quickly and widely.

In both of these examples, I was offered something that I may have actually given serious consideration to if I had been told the truth up front. At the very least, I wouldn’t have felt like someone was trying to take advantage of me for their own profit.

The worst of this in breast cancer, as you will read time and time again, is the use of these horrible diseases and their high profile, to make profit. Companies use pink ribbons as an icon of respectability, honesty, and compassion, even if they do very little to help eradicate breast cancer. It has become such a powerful iconic communication that a lot of people don’t even notice anymore how incredibly tacky and tasteless a lot of this merchandising of our disease is. For example an enormous pink bra statue was installed in a busy pedestrian area of a city. It was inscribed with a healthcare company name and directions to advertise said company through texting so that a tiny bit of money, much less than was likely needed to build and install a 3/4 ton statue.

Then there are all of the sexualized images of women that are used to promote breast cancer awareness because sex sells. You know, if these companies really thought about what they were doing, I mean REALLY thought about it, do you think the marketing departments would say, “Hey, we can make money by leveraging the power associated with a physical disease by combining it with the influence of the cultural disease of sexism. The air of philanthropy legitimizes it and the misogyny will close the deal.”

The last bit, the last layer of this that bothers me so is that not only does all of the pinkwashing use the sexism that is already present in our society to propel itself but by legitimizing it by associating it with a charity, a way to supposedly help women, it makes sexism even more insidious. As a woman, I find this reprehensible. As a mother of a 16 year old girl, I am outraged. As a human being, I am livid.

I emphatically assert that we need more money for breast cancer research. To better understand it, to better treat it, to cure it, and to prevent it. One out of eight women and one out of eight hundred men in this country will develop breast cancer in their life time. These are awful diseases, just awful.

So much about my breast cancer and the commercialization of this disease has reminded me of my youth, when I would be groped and sexualized by boys and men. When I complained I was often told that I should be glad to be desirable enough to solicit attention.

I am very happy to be alive. But I will not be exploited and told that it is a small price to pay for “increased awareness”. I have a brain and I know how to use it.

Corporate America, you may be powerful, super powerful. But even in my few short years as a breast cancer patient, I see increased outrage about Pinktober and it’s exploitative underpinnings. Things are changing and if I’ve discovered one thing about the breast cancer community is that we organize, we write, we talk, we support each other, and we grieve for eachother. We wish these diseases on no one.

Ta ta’s, my ass.

Tags Pinktober, sexism, sexualization of breast cancer

Categories Breast cancer

The Numbness

October 6, 2014 //

As many of you know, breast surgery often results in a lost of sensation. I had a right side mastectomy. I would make sense that in removing all of that tissue that nerves would also be removed. Now my grasp of physiology is better than the average person, but by no means expert. What I can tell you, though is for nearly two years, I have had no sensation at all in the area where my right breast used to be.

This means feeling no pressure, no heat or cold, and although it is delicate to say, no sexual response. Actually, if I want to be really clear, there is no response at all. No affectionate response. No, ”ow, you just accidentally elbowed me in the boob” response. My husband could hold a hot coal to this breast and I would not feel it. No one warned me of this side effect but I had read about it myself. So prior to my second lumpectomy when my husband asked about whether a bilateral mastectomy was indicated, I responded by spelling out the implications for our love life. I had already completed a literature review on my risk of contra-lateral breast cancer, learned about the Gail Index and so forth. I knew that my estimated risk of cancer in my left breast was at a level low enough that I found personally acceptable.

In the last few months, I’ve noticed something. The numbness in my tissues has subsided to some point. I am starting to regain sensation, at least around the edges of my mastectomy site. But what I am feeling is the occasional itch. Sometimes it is deep down and unreachable. Most times it is on the surface of my skin. I am allergic to wheat and when I do eat it I get a flare of eczema within two days and it takes about two months to clear. If I cook all of my own food, this does not happen. But over vacation last August, I ate out, had a salad, and there must have been some wheat in the dressing because I am still waiting for my skin to clear. At one point, I could see that I had an eczema flare over my breasts. We also had family photos taken at the time. It looked like I had acne. Oh well. In any event, I could feel the itch of the eczema. However, when I scratched it, I felt no relief. As my internist told me when I described it to her, “That’s just not fair!” My rash, however, got worse.

In addition to itch, I have also had the return in a sensation that can only be called, “uncomfortable”. It is the mildest of pain, though still noticeable. And it is, again, felt around the edges of my mastectomy, which was performed in August of 2012. It would not be until March of 2013 that the major part of my breast reconstruction would be completed. I am no surgeon but in my own logic, it seems likely that more digging around and transplanting that occurs, the longer tissues take to heal or as my plastic surgeon describes it, “settle”.

I have numb parts. They are starting to awaken. To what extent they will awaken is unknown. But what I do know is that the awakening is uncomfortable and at times, a bit painful. This has called to mind the numbness that can happen to each of us emotionally and cognitively. I consider myself to be above average in self-awareness. However, I have neglected parts of myself, the parts that are numb. And numb parts get that way through damage, through loss of trust, emotional baggage, past trauma. Our mind protects us from many scary and lonely thoughts and feelings. The problem is, however, that it can do too good of a job.

Sometimes the parts of us that are most important, most in need of attention, are the parts that we just don’t think about or feel. The parts that are tired, afraid, and numb.

As you know, I have been digging deep and trying to feel what I need to feel and process it all through. It is a painful but productive process. In keeping with my mindfulness practices, I have tried to keep with my thoughts and feelings throughout. This has guided my decisions. At times, I move forward, full steam ahead. At other times, I take breaks. At these times, I catch my breath, assimilate new learning, and observe a new way of looking at my life.

There are parts of me that are coming alive. At this point, there is discomfort but I believe that in time there will be continued healing and awakening.

Tags Breast Cancer, healing, minfulness

Categories Breast cancer, Feelings, Marriage, Mindfulness

Why good news brings us to our knees

October 1, 2014 //

Many years ago, I was to meet my husband at his work and then his co-worker, Dwight would take us to the airport. I think this was actually the trip we took to the U.S. Virgin Islands. It was a big deal.

I left plenty of time to drive there and because it was before the era of electronic devices, I got detailed driving directions to John’s work. You see, I get lost really easily when I drive. GPS technology changed my life. But we didn’t have it back then. We also didn’t have cell phones.

So I drove from Chapel Hill to the Research Triangle Park in NC. I got utterly and hopelessly lost when I was very close to John’s workplace. By the time I got there, I was really late, and it was going to take a miracle for us to get to the airport on time. I hold my breath and tried my best to keep it together until Dwight got us to the airport. He drove us up to the passenger drop off site and we ran into the airport.

It was at this time that we discovered that we were not late at all. Our flight had been delayed.

You’d think I’d say, “hooray!” Instead, I folded myself into my husband’s arms and balled my eyes out. All of the responsibility and stress I’d felt about missing our flight, missing our chance to spend time in the tropics, flooded over me.

The memory of this event popped into my brain today. A friend from the breast cancer community was feeling incredibly anxious. She didn’t understand why. She had just gotten positive on her last MRI even though she’d expected the worst. I told her that this kind of falling apart happens. “Really?”, she asked. “Nobody talks about it.”

Hmm, she may have a point there. I actually MEANT to write about this myself. I don’t think I ever did.

I don’t think this process applies to everyone but it certainly does to me. I get most stressed in anticipation of stress, deal well with the stress itself, and then fall apart at least a little after I get to breathe again. Emergency mode doesn’t allow for reflection. It’s just decision, decision, decision, action, action, action. Then when the crisis has past, there is exhaustion and also reflection on what could have been.

I am feeling a bit of this today. I was triggered by my husband expressing a lack of happiness with my stress level. I didn’t do anything awful, I was just acting on edge along the lines of, “Are you sure you turned the stove off?” You know, the anxious questions. He told me that he didn’t like it. He wasn’t unreasonable about it except that I thought he could have given me a pass because of my anxiety about the scan. I told him this and then I also shared with him my distress that he tells people that I am “cured” and that I have “a clean bill of health”. I reminded him that the best I can be is “no evidence of disease.” This was not a conversation I have previously had with him though he reads this blog faithfully. I hadn’t talked to him about it because I thought he needed to think these things to function. But today, after being mildly rebuked and having had to remind him of the scans a couple of times, I felt the need to wake him up to my reality. Maybe it was a good idea. Maybe it was not. I don’t know.

What I do know is that cancer is damned stressful, having it, maybe having it, maybe getting it again, etc. I also know that it is stressful for my family.

As I write this, I realize that I don’t know how to end this post. But I guess that’s fitting. This process will be never ending.

If I’m lucky.

Categories Breast cancer, Marriage, Mindfulness

Awareness that Matters

October 1, 2014 //

Recently I met with some parents to obtain background information as part of my assessment of their son. They are highly educated people, both with advanced degrees. They have three young sons, all of whom they speak of lovingly. The father charmed me with the fact that he calls his sons, “honey”. There words were measured and they described their concerns about their oldest son, his tendency at time to not to own his own actions, his quickness to anger, and his frequent use of exemplary verbal ability to argue with adults.

Despite their calm and professional demeanor, I could see the mounting fear behind their words. Their fear for their son’s happiness and safety in the world. We had had a chance to establish some rapport and I decided to take a chance on expressing an awareness of an issue that had yet been unsaid. “I can only imagine the stress that you feel in raising a Black son who has these difficulties, in our country.”

Both parents nodded vigorously and the father said with palpable relief, “Finally, someone gets it.”

I am not African American. It was chancy for me as an outsider to make the comment that I did. It was also chancy for me to use the term “Black” instead of African American. The former is more likely to be acceptable when used by African Americans, not by an outsider and further a member of a privileged race, such as myself. But I thought “Black” was a better reflection of their own thoughts and feelings about their son. I also know that due to my personality, I tend to be able to say things like this and they are interpreted in the way I intended. But I am still very careful. I will never know what it is like to be African American.

But I can try to understand the best I can and to be aware of the common challenges that African American families face. And my awareness must be more than an internal event. It needs to be linked to effective action. In this example, my action was communicating my awareness of the rational sources of their fears. These parents have three boys. The number one cause of death for African American males between the ages of 15 and 34 is murder. And one might think that the risk does not apply to these boys because they live in an educated and relatively affluent family. I think realistically, it may buffer this risk to a certain extent. However, even looking at my own life, I know there is a particular danger that cannot be eliminated. I have a lot of friends. A great number of them have advanced degrees. Two of my friends, both Ph.D.’s, have had murder in their immediate families, one attempted and the second resulted in the death by shooting of a friend’s brother, who was waiting in line to get into a night club. Both of these friends are African American women from well educated families. One of them even had an uncle who ran for president of another country.

There are many people who live with the cloud of potential catastrophe. We are often unable to fully appreciate it but we can do our best to understand.

I am awaiting the results of the routine MRI I had yesterday. I am learning to deal with the anxiety of these scans but I am anxious. My husband forgot about the MRI even though I’d told him a couple of times as recently as the day prior and had asked him to accompany me. His alarm went off yesterday morning at 6:30, his normal time to get ready for work. However, he was planning to go to work after my scan and it was not until 9:45. He was getting up too early to have remembered the scan so I reminded him and he came back to bed. My husband is more forgetful than I would like. But I understand that he is not doing it on purpose and further, he would have seen the appointment on his calendar. Plus, he doesn’t live in the perpetual state of Potential Cancer so there are some things he doesn’t quite understand about my experience as a cancer patient. Similarly, a close friend apologized to me yesterday for checking in with me about my MRI. He’d had quite a stressful day of his own and again, he doesn’t live in the state of Potential Cancer. Before I lived there, I didn’t really worry so much about my friends’ scans once they’d had no evidence for disease for a couple of years. The panic subsides. I don’t want my husband or my friends to live in the Potential Cancer state with me. I don’t wish that on anyone just as my friends with metastatic disease wish it for others. But the actions that come from understanding our situation are important.

As a world, we need to find a cure for breast cancers. But as individuals, we also need people in our lives who have an awareness of the unique stresses of being a breast cancer patient who are also able to convert their awareness into emotional support. You, friends and family, may be helpless to prevent recurrence or to cure a loved one’s active disease, but you can provide emotional support. You can make living in the Potential Cancer state or the state of Perpetual Cancer more bearable and less lonely.

Perhaps it would be helpful to explain to you what scans mean to me. A clear scan means that I can live another six months with “no evidence of disease”. A clear scan to a person with metastatic cancer means that they can live with “no evidence of progression”. If my scan shows evidence of cancer, I will go into the fast paced chaos of not knowing and having many tests, the perpetual “hurry up and wait”. If it turns out that I’ve had a recurrence, I will likely undergo a more aggressive treatment protocol than I did in the past and to undergo previous treatments for which I now appreciate the full impact having gone through them before. By the way, a lot of cancer treatment sucked. My family will suffer. My patients will suffer. I could go on and on.

I keep telling myself that the results of a scan, assuming accuracy, don’t tell me anything about myself that wasn’t true yesterday. I often tell my patients this about the diagnoses I give them. “You are the same person you were yesterday.” On myself, this is a hard sell. I am a clinical psychologist. Nobody comes to me unless they already know something is wrong. Something is not going well. There is a problem. I didn’t know I had cancer. I felt fine. There was no lump. Right now, due to my mental and physical health practices, I feel healthier than I have in years. But cancer can hide for a long long time without someone even knowing something is wrong.

For me as a cancer survivor, it is surreal at times to realize that I can’t trust my own sense of my body. I can’t gauge my own health. My body can lie to me. I try to be a very truthful person with myself and with others. Honesty and clarity are extremely important to me. This is hard.

Offer your loved ones your understanding and support. You don’t need to live with us and we don’t even want you to, but do connect with us. And when the Pink wave tells you that awareness is action and pink is helpful, put your money and volunteer time somewhere else. Somewhere that helps.

Gray and black clouds
hide the sky.
The light shines through
There is clarity above.

The clouds will burn off
maybe today
maybe tomorrow
some day, certainly.

I will see the sky
I’ll know if I traveled
during the quiet space
between dreams
to the terrifying place
the familiar chaos,
the Cancer Place.