I am grateful for my blessings, really, I am. And I have a multitude of blessings. I work hard to be a happy and balanced person. Most of the time my daily life makes sense to me. Most of the time my responsibilities feel bearable. Sometimes, like today, I feel worn out. I feel like I am living a life that requires 150% of me. People, each of us only has one whole self, which is 100%. 110% only exists on those stupid business motivational posters.
One of the things that I tried to change about my life after my cancer diagnosis is expecting myself to work near 100% capacity every day. I need to rest like every one else. I need balance and rejuvenating experiences.
I have been working myself hard since November. Really really hard. My family life has been hard and my work life has been hard. My health, thank goodness, has been good.
When I was younger, working more than is healthy, held certain seductive powers. I felt accomplished, strong, and self-sacrificing, the last of which giving a moral edge or some kind of “get out of jail free card”.
It’s so easy to work too hard. It’s hard to rest, to have ease. I hate that. I hate that having ease takes so much damn work. Easy shouldn’t be hard but it is.
Last year, I had two periods, each a few days long, when I felt transported into a fun, easy world outside of my work and family responsibilities. Both times, I spent time with friends and mostly without my family. It was fantastic. It was easy. Then I got back to my normal life, which although rich with blessings and meaning, landed on me like a ton of bricks.
The work on moving my psychology office occurred over two major holidays, some tough parenting issues, and financial stress. It took a lot of time and money in amounts far exceeding what I wanted. Although I am very happy with the outcome, I am worn out. I need a break. Yesterday, I was working on some summer plans. They became complicated quickly. At this time and place in my life, it hit me hard and I was sad. I was disappointed. I was sad and disappointed not with myself or anyone else, but with the lack of ease in my life. I was teary when my husband came home. I explained in a few sentences. He totally understood; after all, we share a life together.
It’s not easy to be easy. I guess I will keeping working hard on that.
As a person with “no evidence of disease”, I am grateful. I am also grateful that I continue to heal physically, emotionally, spiritually, and yes, cognitively. I have written of the attention, concentration, working memory, and organizational difficulties I’ve had since being diagnosed with cancer. (Some people call this “chemo brain” though I didn’t have I.V. chemo.) These difficulties have slowly but surely improved over time. A huge boost came after I completed a cognitive behavioral sleep program and then later, when I took gaba pentin for a few months to reduce my nighttime hot flashes. I have also had improvements through working to reduce my anxiety and grief through my mindfulness practice and personal psychotherapy. Last but not least, writing this blog is one of the most therapeutic endeavors I have ever undertaken. It, of course, has side effects like any therapy in that my posts sometimes worry my mother.
Although a good deal of my energy has returned, I still don’t work full time. I find that it is too hard to maintain my emotional and physical health when I do this so although I sometimes schedule a full time or slightly overtime week, my average is about 80%. Prior to my diagnosis and shortly afterwards (I had to cram my schedule in order to take off time for surgeries), my schedule varied from week to week but I worked up to 150% of what is considered full time.
Despite my reduced hours, I am quite busy. Although most of my day is meaningful and productive, a good portion of my day is being busy for the sake of being busy, doing trivial things that do not fill me up. And some of the trivial things would not be trivial if I stuck with them for more than a couple of minutes. But I spent some part of my day alighting from one activity to another in rapid succession.
I do this less than earlier in my cancer treatment. The main reason back then was fatigue, boredom, and the need for fun. Since I was having trouble with sustained attention, I flitted around lot. Although I have never written as much or as frequently in my life, I stopped reading books. There had been no time in my life since about age 10 or 11 when I was not reading on a daily basis, with some breaks for a few weeks during adulthood, when my stress was at its peak.
I’ve been doing a lot of thinking about accepting the things in my life about which I feel feel, grief, and anger. I know that a common fear for people impacted by cancer is fear of abandonment. My husband worries about losing me. My daughter, although she denies it, worries about it too, I think. She acts very much like other teen girls with whom I’ve worked, who have a mother with a serious disease. I worry about losing my family, through decreased participation in family life if I were to get ill again and through my own transition to death, which may not come any time soon, but will come some day.
I had a epiphany last week. Although I was aware of my own abandonment fears, I realized that I was continuing to give myself busy work to avoid feeling lonely. I have been filling up spaces in my heart and mind with filler. I have too often disengaged from my husband because I associate him with our fear of my cancer as well as the stress we have in parenting.
Since that epiphany, I have made some changes. Trivia is okay but not as a main course. And trivia is much better when enjoyed with a loved one. I also realized that a lot of my life is serious and difficult. I have a serious job as a child/adolescent psychologist. I have personal psychotherapy, our family class on mindfulness and emotion regulation, and couples therapy with my husband. Between my job and my appointments, I spend the majority of my waking hours in a mental health facility. Last Friday in couples therapy, which we have been attending weekly I said, “I want less therapy and more fun. John, I want to spend more time with you having fun.” Our psychologist thought this was a great idea. John agreed, reluctantly, because this scared him. But we’ve been spending more time together. Yesterday, I received a note from a childhood friend. Her husband “out of the blue” told her that he is divorcing her, on the day before their 27th wedding anniversary. This has also reinforced my resolve to continue to work on my relationship with my husband. Too often people live separate, lonely lives, full of activities, suffering in silence.
I am not by nature, a lonely person. Cancer has a way of whittling away at security, even for those of us with “no evidence of disease”. Breast cancer also has a way of striking women at the prime of life in terms of professional and family responsibility. Many of us have full careers, children who are not yet independent, and elderly parents who may need support. It is easy when juggling these balls, to feel fragmented and flittery, to feel engaged with everything but intimately connected with no one, not even with ourselves.
My Wednesday “learning to keep my shit together” class reconvened this week after a holiday break. The topic for the evening was acceptance, a mindfulness practice. The purpose of mindfulness is to reduce suffering. Acceptance is one process by which suffering is reduced.
I am working very hard to accept some hard truths about my life, some about my present and some potential truths in my future. These are truths about my life as an individual, as a wife, and as a parent. As I was thinking about this, one of the instructors wrote two equations on the white board:
Pain + acceptance = pain
Pain + non-acceptance = suffering
I think of pain and suffering as synonymous. But this is not a dictionary course or a vocabulary test. And I have to admit that “suffering” sounds worse than “pain”. Suffering sounds like pain with a large side dish of something nasty. Perhaps the space between pain and suffering, within this framework, is filled with a roil of self-inflicted things. Another way to say this is that suffering may result from coping with pain in a way that enhances it and perhaps makes it last for a longer time. Everyone does this from time to time.
There are “hot button” issues for me. There are experiences that I have for which I have an immediate, negative response. They push a fear button, an anger button, or a grief button. And as I am having the response, I often know that it is out of scale. I have gotten upset too quickly and too intensely. There are also times when I feel stress in the back of my mind and it wakes me at night or invades my dreams. I think these are examples of suffering.
Acceptance is a process, a continuum. I am trying to work my way. So far I am learning that there is a cognitive part. In order to accept something I need to acknowledge it. I need to name it. I need to reason with it. That is what I have mostly been working on for the past couple of years. The acceptance that takes place in my mind. On Wednesday, our homework was to think about what acceptance would look like for each of us as behaviors. If we accepted the aspect of life with which we were struggling and suffering, how would our behavior be different?
Changing my behavior, making it consistent with acceptance, is really hard. I have been making a concerted effort on this for the past month or so. I have seen changes. I have experienced shifts to a more positive place. My anger and fear are reduced. My pain and sadness are still there but the suffering is getting less.
You may have heard that it rains a lot in Seattle. It does rain more than average, there’s no getting around it. But there are a lot of much rainier cities. We don’t even make the top 10 rainiest U.S. cities, by a long shot. The entire eastern seaboard of the U.S. gets more annual rainfall than Seattle. Here’s the deal, though. We get primarily light rain. And it’s spread over many many days. While a significant portion of the nation has the rainiest time of the year in the summer, we have our rainiest time in the winter. Here, up north, it’s really dark, too. Seattle knows how to pile on the dreary during winter.
But even in winter, there are beautiful days. Yesterday, Christmas Day, was one of them. My husband and I walked down to the beach. The wind was gentle and the sky was blue. I spent a good bit of the walk stripped down to a short sleeved t-shirt. Granted, I had a Lupron shot last month and the furnace usually kicks in about this time but still, I was walking on a Seattle beach during winter in a t-shirt. What a glorious day.
I happen to think that the contrast between how our city looks on a sunny day versus a cloudy or rainy day is one of the reasons that we have a reputation for being a wetter city than we actually are. It’s disappointing to visit Seattle after seeing all of the glorious photos of the mountains and the sea only to be drizzled upon. But I don’t visit here. I live here. I know that the sun will come out again and that I will see it.
People in my city, especially natives, such as myself, often remark that our part of the world would not be so beautiful without the rain. This is true. We have some of the most beautiful summer weather I have ever experienced. And there is so much sunlight with very long days. Without the rainy, dreary days, though we would not have the abundant greens, the trees, bushes, mosses, and lichens. Winter is a time when plants focus their energy below the ground. The rain is essential for root growth, the foundation of plant life. Without precipitation, there is no snow on the mountains. We are so lucky to live in a city bound by two snow-capped mountain ranges. The winter snow on our mountains is also our water supply for the dry months of the year.
We need the wet and dreary days for life. It’s not just that the bad weather makes us appreciate the sunny days more because of the contrast. We actually require it. I’ve been thinking of this a lot in terms of how it relates to life, in general. Are sadness, disappointment, grief, and other painful emotions and experiences necessary for life? More so, do they enhance our lives?
I don’t know. I am pretty sure that seeking out suffering is a bad idea. Let’s not look for trouble. And denying suffering in oneself or others is invalidating. I am working a lot on acceptance of the things in my life that weigh on me heavily on a daily basis and are sometimes terrifying. Okay, it’s not “things”, it’s a thing. The thing is parenting my 16 year-old brilliant fireball. A few weeks ago, I had an epiphany followed by some meaningful adjustments in my behavior.
I realized on a deep and visceral level that I can’t protect her from the world or from the consequences of poor judgements that she makes. I didn’t abdicate responsibility but I relinquished the fantasy of control. I am still as busy parenting as I’ve ever been but my efforts are less frenzied and whirling. This acceptance was also accompanied by deep sadness. But the sadness was grounding instead of frenetic and anxious. I’m not going to kid myself and announce that acceptance is my new permanent state of being. My state of being, especially as a parent, will continue fluctuate. But this is an important shift.
I don’t know the future so I really don’t know how to end this post. What I do know is that every sunny time is to be celebrated and that the dreariest times cannot be wished away. I am learning more and more not to manufacture suffering; why would I want more of that? I am learning more and more to accept this as how life should be simply because that’s the way life is.
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.
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.
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.
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.
Several times a year, I observe one of my patients in the classroom as part of my assessment. This step is particularly helpful in assessing very young children. Once kids get older than 1st or 2nd grade, it’s hard to get a good observation in just an hour because the behaviors of interest just don’t occur as frequently by that time. So when I observe in a classroom, the kids are anywhere from 2 to 7 years old.
This morning, I observed a student in a classroom of 3-6 year old’s. I haven’t seen little kids like this in some time due to changes in my work I made in order to accommodate my cancer treatments as well as to reduce my treatment load (I used to see lots of little kids and their families) so I could get home earlier for family reasons. Honestly, I miss little kids.
What a sweet little classroom it was. I see a lot of wonderful teachers. The teacher in this classroom was excellent in a way I don’t see a lot. The quietly compelling teacher. The gentle but engaging teacher. The patient but direct teacher. She was just lovely to watch. I told her this as I left the classroom. She smiled, gently set her hand on my arm, and then put it over her heart. The students loved her. They trusted her. They followed her direction, which she did with encouragement and love. I try not to attract attention when I observe but even so, when children happened to pass where I was seated, they smiled at me and I smiled back.
Sometimes visiting a little community like this is a truly beautiful experience. This was one of those times and I found myself feeling very moved, my eyes nearly welling with tears. It is not that small children learning in a nurturing environment, where they receive and give love, is not worth tears of joy. But there was something else I was feeling, wistfulness, a longing sadness for things lost.
I have had this feeling every morning since Sunday. At first I thought it was just related to my having had a wonderful two day visit with a friend, come to an end, kind of like that let down on Christmas after all of the packages have been unwrapped, the guests have left, the floor is a mess, and the dishes need to be done. That was part of it but not all. A couple of days ago, I also realized that the two day visit had given me a very much needed break from the stress not only from my job but from my family life. For two days, I concentrated on fun and entertaining people. We are not supposed to admit this as parents, especially mothers, but I must say also that I experienced many hours of feeling almost childless and this was enormously lightening. It was almost like I imagine not thinking of having had breast cancer for an entire day.
This morning, I understood another layer. I miss having a small child. I love my daughter; she is a force of nature and a singular sensation. It is still normal for her to say something if not very sweet, at least positive about my husband or me, each day. But there are also the other times, the hard parenting times. These are times that stress out the family a great deal. When I was a researcher at the University of Washington, we followed a treatment model for parenting teens, which included a focus on guidelines, monitoring, and consequences (positive and negative). My husband and I are in the camp of parents who provide all three parts. Most parents provide guidelines to their teens, many provide consequences, effective, ineffective, fair, unfair, and/or harsh. A lot of parents, however, do not adequately monitor or supervise.
Consequently, our kid gets busted for stuff that other kids get away with because their parents aren’t paying good enough attention. And this makes here angry and insulted in only the way teen can get. Instead of “Oh no, you caught me doing x, y, and z” it’s “I can’t believe you violated my right to do x, y, and z, not that I am admitting to doing any of those things!”
Testing parental limits is a normal part of growing up for a teen. And she did it when she was little, too. And sometimes she even said really mean things to me, as mean as a four year old could be, “You’re not my friend!” “I’m going to punish you!” Or in the words of the young patient I used to have, “I’m going to put you in time out for a hundred fousand years!!”
When our kids are little, some of these statements can sound pretty funny, especially if your child still can’t pronounce /th/ in “thousand”. They are also, little. Little kids can make a powerful racket and they can express powerful feelings but in the end, they are small. They are not powerful. But teens have a lot more independence. They have a lot more power. And they often don’t want our help or limits even when they need them. When a little kid has a tantrum after testing limits, it’s typically over in a short amount of time. Even kids who have horrible and intense tantrums are usually done in an hour or two. Not to dismiss the stress of those kinds of tantrums because it is considerable, but an older child due to their increased cognitive development, can hold a grudge for a really long time. And they can test for a really long time. And because they are harder to supervise, there are tests you fail as a parent because you didn’t even know to show up for them.
We all want the best for our children, to be happy, to be responsible, to have healthy relationships, to be able to contribute positively to society, and to be able to care for themselves and others. Some days it is incredibly exhausting and I know that it is for her, as well. And then empathizing with her tumult, creates inner turmoil for me.
Little children are so much simpler. Their world is so much smaller and they are typically happy to have you be in it. When my daughter was in preschool, she used to tell me how much she loved me in delightful ways. One of them was, “I love you more than the world has changed. And the world has changed A LOT!”
I miss my little girl. I miss her as much as her world has changed. I love the young woman that she is even more. But most of all, I pray for her happiness and her health, that her unique gifts will be fully appreciated out there in the world without my husband and me.
I have an MRI next week. I have them once a year as a routine follow up. In six months, I’ll have my annual diagnostic mammogram. Welcome to Breast Cancer Land. When they aren’t loading you into a noisy, rattling tube, they are smashing your boobs while having you hold the rest of your body in positions reserved for the less commonly read sections of the Kama Sutra.
I actually don’t mind the actual procedures so much. It’s the worrying and waiting for results. I don’t want to do this! I have all kinds of fun things planned for October! So I find myself thinking, “Maybe I should just reschedule my MRI for AFTER I do my fun things. Then if I have a recurrence, it won’t spoil my fun.”
This is a ridiculous kind of thought. I mean I could reschedule for November but then it would be, “What if I have a recurrence? It will spoil Thanksgiving.” Then Christmas may be spoiled, etc.
The fact of the matter is that there is no good time to have cancer. Right before scans, I find myself scheduling patients with the thought, “Hmm, I wonder if I will be able to finish that report if I find out I have a recurrence?”
When I was diagnosed with cancer, I can’t say that my life came to a screeching halt, because it didn’t. But major changes and upheaval occurred in order for me to get the assessments and treatments I needed. On the day I was diagnosed, it was a work at home day and I ended up cancelling two phone consultations with other healthcare providers. I worked on my reports the next day. It was a three day weekend and we were expecting my father-in-law to come stay with us. It was actually nice to have him there. He gave us a lot of support.
My life will stop when I die. A cancer diagnosis didn’t make it stop. I can’t juggle my schedule around the possibility that I will be worried and stressed. I am a planner but this is not one of the things to plan for, at least in the short term. I mean, I do think about the long-term. That’s why I exercise regularly, try to eat well, meditate, and go to psychotherapy. I am taking care of myself for the long term. I am preparing for the possibility of a long life. And those things I do for the long term, make me feel better right now.
This is my gratitude week. I had an idea in mind when I planned this but I have not quite followed it. Instead, I have gone according to what I wanted or needed each day. Today, I feel like I want to do something different with my anxiety.
I trust myself to do what I need to do if my cancer has returned.
I appreciate and feel deep gratitude to my friends and family for holding my health in their warm wishes and prayers.
I appreciate my access to excellent cancer treatment.
I am grateful that although my breast cancer surgeon has retired, that there are a number of excellent remaining surgeons at my cancer center.
I appreciate my healthcare insurance.
I am grateful to my husband because I know he will drop everything and come to my MRI appointment next week if I ask him to do so.
I appreciate my daughter’s resilience in the face of my health problems and her tenacity in life.
I love living.
I am alive until I am not.
I will do my best to live accordingly.
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.
My Eyes Are Up Here 