Archives for posts with tag: coping with breast cancer

It is National Siblings Day so I am reposting this one from November 2012 about my younger brother and me.

I have mentioned perhaps one or six hundred times that I have five brothers. One of my older brothers’ favorite “games” was pig pile. This involved announcing a victim and then having five siblings tackle and pile atop this person. For example the exclamation, “Pig pile on Liz!” was followed by my being tackled and piled on by five brothers, the oldest of whom was nearly 10 years my senior.

Pig piles seemed to be exclaimed on a very frequent basis and as the only girl of six children and the second to youngest it seemed that I was more often than not, the vortex to which the pile was attracted. A Bermuda Triangle of porcine piling, if you will. As the “baby” of the family, my brother James also spent a fair amount of time face planted on the living room floor beneath four sets of sprawling limbs shod in Converse low tops of various sizes.

Although our older brothers would admit to the pig piling, they would disagree with the metaphorical implications. They believed James and me to be spoiled. We avoided the horrors of ruler wielding nuns, whereas they all attended St. Anthony’s School, for example. Our family also had a little more money when I was growing up, not a lot more but just enough to fuel the “you’re spoiled” flames. I maintain that whatever advantages we may have had were more than offset by their mean older brother shenanigans.

James and I are only 18 months apart in age. Our next oldest sibling, John is 3 ½ years older than me and 3 ½ years younger than our next oldest brother, Mike. John was kind of caught between the “big boys” and the “little kids” of the family.

James and I spent a lot of time together. We played together a lot. We mostly got along very well though we could sometimes fight verbally and physically at which time my mom would yell, “I don’t care who started it. I’m finishing it. Go to your respective rooms!”

We played a combination of traditional boy and girl activities. We played with cars, trucks, and climbed trees. We designed obstacle courses in the yard and spent hours upon hours in the woods surrounding our house and neighborhood. We did not, however, play with Barbies or baby dolls. Remember, this was the late 60’s and early 70’s. My mom made us each two sets of Raggedy Ann and Andy dolls as well as a bunch of stuffed elephants. Due to her combination of genius and industry, we were able to play dramatic reenactments of family life with more socially acceptable dolls.

James was not really interested in formal music training, but he has an incredible ear and natural musical ability. He is also extremely funny. By the time I got to high school, I was pretty serious in my classical flute playing. He had a plastic slide whistle and would frequently copy whatever piece I was practicing in my room, complete with vibrato and when era appropriate, Baroque runs. When it wasn’t infuriating, it was hilarious.

These days my brother plays more music than me; he taught himself drums and plays with his 17 year-old son’s band. The only music we make together is the occasional game of Rock Band. The thread that carries over the years is that fact that my brother can always, I mean always, make me laugh.

He reminded me of this last Friday. James attended the requiem mass at St. James. I was kind of surprised to see him there since it was a pretty long drive for him and I think he hates to drive even more than I do. We got there an hour early to get a seat. During the time before the mass started, he was cracking me up and my laugh was echoing throughout the cathedral. When we were kids, due to different church rules, we were not allowed to talk before or obviously during mass. So with this as a back drop, his jokes have always been extra hilarious. I’d laugh, he’d say, “Now if any other family is coming tonight, they will be able to find us.” Then I laughed harder than before. Then he started singing family gossip in his version of Gregorian chant. I lost it again. Now here’s the thing about my brother. His antics are not particularly loud. He is actually a fairly introverted person whereas I am loud and gregarious. I believe he very much likes to set me up and watch the loud fireworks of my laughter, knowing that he is the one who lit the fuse.

James and I were successful for decades after our childhood in avoiding the bottom of the pig pile. Then I found out I had breast cancer and it wasn’t my older brothers that piled on top of me, it was the world in which I thought I had lived, that dissolved and crashed down on me. During the acute stage of my breast cancer treatment, there were many ongoing assessments and constant revisions of my treatment plan. When I was recuperating from surgery and bored, meaning prime time for worries to creep in, I called him, “James, I am bored. Tell me something funny.” And he did. And when I was anxious about waiting for the results of oncotype testing, which would determine whether my oncologist would recommend chemotherapy or not, I called my brother, “James, I have 20 minutes until I need to leave for my appointment. Can you tell me funny things and distract me?” And he did.

James does not show affection in traditional ways. I remember once, about ten years ago, his closing a telephone conversation by saying, “It was nice talking to you, Liz.” That was a major outpouring of verbal affection. But I know my brother loves me, thinks about me, and keeps the warmest wishes for my health. And he shows his love to me most consistently by making me laugh about today, laugh about cancer, and laugh about the things we did and experienced as kids.

For these things I will be ever grateful. James, you joined me at the bottom of the cancer pig pile.  I can’t thank you enough for doing that. If you didn’t realize it before, please realize it now that you have helped me tremendously. Thank you for making me laugh at some of my lowest and scariest times. I love you a lot and I know you return that even when it may come in the guise of slide whistled Mozart.

James must have been about 1 1/2 years old to my three years. It looks like we were having much fun in a rare Seattle-area snow.

James must have been about 1 1/2 years old to my three years. It looks like we were having much fun in a rare Seattle-area snow.

“Mom, do want to see the present I got Dad for Fathers’ Day?”

Seeing that she is headed to the front door of the house, I reply, “Yes, but where is it?”

“I hid it behind the blackberry bush. I want it to be a surprise!”

“You mean the blackberry bushes a couple of blocks from here?”

“No, the blackberry bushes right over here!”

We walked a couple of blocks (I was right about the location) and there it was, a blackberry bush along a neighbor’s retaining wall that spills over onto the side walk. My daughter reached behind it and pulled out my husband’s gift, wrapped in a beach towel. I convinced her to take it home in case it rains in the next few days.

The gift was also not very well hidden. My daughter is not good at hiding, whether it be things, her emotions, or her thoughts. She is not good at being sneaky even when she tries, her emotions are easy to read, and her thoughts if perhaps not shared immediately, come out eventually.

In some ways, this is incredibly refreshing and endearing. For her life to be out in the open to others and to herself. In this way, I think she takes after me. However, I learned the hard way in life that it is important to be able to trust someone before sharing private information. I made a lot of mistakes.

I grew up thinking that not sharing was hiding. Over time, I learned to respect my own need for privacy. I learned to set better limits with people and to better determine who is trustworthy and who has not yet earned my trust. Sometimes setting a limit means something as simple as not answering a question and changing the subject. People I don’t trust with my most vulnerable thoughts and feelings are also ones who are very likely to be offended if I say, “That’s private. I don’t want to talk about it.”

People used to ask, “Why do you have just one child?” Now these folks were close friends or family. They were people I’d JUST MET. As I’ve written in the past, I made evasive jokes or changed the subject. If someone says something rude to me, I don’t respond, “You hurt my feelings” unless I want to maintain or develop a close relationship with that person.

So with all I’ve learned about privacy and trust, how did I end up writing a very self-disclosing blog? One of the main reasons I started this blog was to process a very stressful and traumatic experience in a healthy way. As a psychologist I know that we can get stuck if we don’t integrate painful experiences into the rest of our lives. This is a balancing act. It means that I can neither hide from my cancer nor hide from the rest of my life.

At this present moment, I can’t think of another way I’d rather live. And if I do, you know I’ll probably end up writing about it here.

I remember the thrill of discovery when I was in high school German class. There was a second person plural tense, “You all”.

I was raised in the northwest of the U.S. We are considered to have “no accent”, if that is such a thing. In any event, the closest we have to a plural second person is, “You guys.” As a feminist and inclusive person, that convention leaves much to be desired. But when I was learning tenses from Frau Johnson, my high school German teacher, I learned of the miracle of a second person plural tense. How cool was that?

When I moved to the South, I was inundated with this tense, “Y’all.” Again, how cool was that?. But as a person from Seattle, I really couldn’t pull off, “Y’all.” I just didn’t have the cred for that. Although I did acquire a Southern accent while I lived in North Carolina for six years and northern Florida for one year, I thought saying, “Y’all” was not genuine for me. I did not acquire my accent purposefully and it was not a full Southern accent. Throwing out the term, “Y’all” would classify as being a poser. (Yes, I could write “poseur” but since I do not know French, doing so would make me a “poser” twice over.) It was too different from my native dialect.

But I liked the tense. It appealed to my logic as well as my inclusive sensibilities. Consequently, I settled on, “You all.”

Yes, it is pretty nerdy but so am I. And I am not a real Southerner. But I can say, “you all.”

Time and time again I put my feelings and thoughts out on this blog. Sometimes, and rather recently, I have the fear that I am a big whiner. But I also know that many of us do not disclose our complaints, our fears, our anger, or our sadness because we fear that we are to “get over it” by now.

Yesterday, I posted about my anger and my anxiety. It is not overwhelming but it is unpredictable, bothersome, and sometimes scary. A number of you out there, people whom I’ve never met, responded with a great deal of emotional support.

My first response was regret that I had caused you worry. And then I remembered the many times during which I have been happy to offer another support when he/she was having hard times. I remembered that seeking support in each other is not just a part of life but it is also a beautiful part of life.

I have a lot of gratitude and I would like to say to you all. You all are sweet. Thank you. Thank you very much.

APA-BlogDayBadge-2014

Today is the American Psychological Association’s Mental Health Blog Day. Since I am a clinical psychologist, not to mention a member of APA, I am republishing a post I wrote last fall, “I can deal. As I’ve disclosed in the past, I have a history of major depression. I have not had a depressive episode in over ten years. I attribute my years of good health even with enormous life stress to a combination of treatment (ongoing medication and psychotherapy, as needed), exercise, mindfulness meditation, good coping skills, and wonderful friends and family. One of the reasons I write about my own history of mental illness is that so many people fear it so much that they avoid getting support or even admitting that they have challenges. As a mental healthcare provider, I also know that people in my own field tend to either embrace the support that our field offers or to avoid using services or even the support of friends. If you are suffering from mental illness or even just unhappiness, what’s the worst thing that could happen if you sought out support? And what’s the best thing that could happen? You could get a lot better or at the very least, you would no longer have to suffer alone.

 

Today, my brain feels pretty functional and I feel calm despite the fact that I still have a number of unknowns in my life including the results of my MRI from last Friday. I spent a good 2-3 weeks up until last Friday on a roller coaster of anxiety. I can’t remember if it was Wednesday or Thursday of last week but on one of those days I was a mess for a few hours. I was so worried about my MRI and the prospect of going through cancer treatment all over again. I have had plenty of sadness and fear. This was different than in times past. As I have written, I have felt storms of emotion at different times during the past 1 1/2 years. But at my core there was a sense of peace and calm.

How was my core different this time? In addition to the stress around the MRI being scheduled, then cancelled, then rescheduled (I hate that kind of stuff), about a week or two into that whole mess, my energy dipped precipitously. I was really really fatigued. Like everyone else, I have a low energy day every once in awhile. But I had several in a row. And the fatigue felt different to me, it was the kind that can pull me down into very sad places. This scared me. Anxiety followed by prolonged fatigue is how my depression has started in the past. And I have had periods of time, especially in the winter when I experience this fatigue and although I can never be certain, it feels like the start of a depressive episode that never happens because I am able to fight it off with my medication and cognitive therapy techniques.

I have not had clinical depression in over 10 years but it has been a strong concern of mine that I would have a recurrence due to the stress of being a cancer patient. So I was really scared last week and although I talked to a few people about the fears I had about cancer recurrence, I told no one, not even my husband, about my fear of being depressed again. I felt isolated, lonely and guilty about being a very needy person. I was still able to work and behave with a semblance of normalcy when it was very important that I did so.

By Thursday night, I started feeling significantly less stressed. I had gotten the core of peace and serenity back even though I was still distressed. But I wasn’t entirely back to whatever “normal” is these days. My emotional states change so much more frequently and intensely than they used to and I understand why they do. I can live with the “normal crazy” of cancer treatment. I am still myself but in technicolor. When I am depressed I am not myself. There are some people who have persistent depression, which tends to be a steady, low level misery.

In contrast, when I’ve gotten depressed, it has been acute and more severe. I fell into a very scary, powerless, and hopeless chasm, into a world where I could act like myself for some periods of time but it was acting. And I didn’t feel like myself at all. The first time it happened, I kept thinking that if I just kept problem solving, it would go away. So I let my untreated depression go on for some time. The second time it happened, I recognized it within a week or two and thought, “Oh no, we’re not doing this again” and got myself back to see a psychologist and my internist within a week and my symptoms started subsiding very quickly, within a couple of weeks.

Now that I’m writing this, I am realizing that I handled that last episode pretty well. And I am also still seeing a psychologist every month, not to mention all of the healthy things I do that are good for both physical and mental health. Depression, you are not welcome, but if you come anyway, I can deal with you, too.

(Update: The results of the MRI showed “no evidence of disease” and that is my current breast cancer health status.)

Tomorrow I am having my last planned surgery. It’s what I hope is the last step in my breast reconstruction. In my mind, and I’m not trying to be funny, I think of it as getting “realigned”.

This type of physical realignment seems pretty straight forward really, compare to mental and emotional realignments that I’ve done throughout my experience with breast cancer. I’ve made adjustments to my expectations, my hopes, and my view of life in general. I have made adjustments in my relationships as well as the places and people to which I look for support. I have adjusted my tolerance for unnecessary drama in my life. My world has gotten both larger and smaller.

I’m hoping that this set of procedures to be no big whoop compared to what has transpired in the past. And I certainly hope it is my last surgery for a good long while.

I’ll let you know how it goes.

Love,

Elizabeth

 

I had a weird dream last night. I went to a photography studio to get my picture taken. It was kind of a combination of high school senior photos and my wedding. Tom Colicchio a famous U.S. chef who can be seen on the show Top Chef was there. My former boss from the University of Washington was there. Once I got to the studio, I realized that I had left my shoes at home. I asked how much time there was left until it was my turn for Senior/wedding photos. I was told 30 minutes. I decided to go back home for the shoes. In an Elizabeth dream first, someone loaned me some sort of jet pack like device and I was able to fly all of the way home and most of the way back to the studio. (My daughter has lots of flying dreams. This was my first. I am growing as a person in my dreams.) Unfortunately, I ran out of fuel and had to run most of the way back. By the time I got to the studio, I realized that I’d again forgotten my shoes. I was also rather disheveled from running and had no make-up to freshen up. And for whatever reason, I was wearing a men’s sport coat over a white wedding dress. (Now that sounds more like a typical dream for me.) My old boss would be thrilled to hear that in my dream he helped me out by fixing my hair. The photographer was a sweet woman who let me borrow some shoes in my size as well as a tube of lipstick that she said was, “just my color.” Friends and strangers helped me out and put me back together again.

I think I am an imaginative person but I don’t fantasize a great deal. Well actually, I fantasize but my fantasies are usually pretty realistic. They are things that could really happen. I think this is one of the reasons I enjoy documentaries so much, especially those about every day people having meaningful experiences that are in the range of possibility for many. Last night, I saw the documentary, Walking the Camino: Six Ways to Santiago with my former Internet-only friend, Meredyth and her friend, Liz. We belong to a photography group on Facebook. The group includes a couple hundred people from all over the world. Meredyth and Liz live in nearby Vancouver, BC. They came down for the weekend and Meredyth invited me to the movie. We had the best time. There are a lot of lovely and interesting people in the world. Meredyth and Liz are both teachers and I can tell that they are very excellent teachers. It was nice to share our mutual love and commitment to children and their development. Liz, as it turns out, also belongs to the photo group but I have not seen her photos or interacted with her previously. Meredyth posted a photo to the group last night and awoke to a number of charming comments from group members about how happy they were that the three of us had met in “real” life. Most of the people in the group have never met one another in person. Meredyth and Liz were the first group members that I have encountered in the tangible world. I hope to meet more of my cyber friends in the future. It was a very special experience.

The documentary followed a group of people from all over the world, most of whom had never met previously. They were people who traveled to Spain to complete the Camino de Santiago, a long distance spiritual walk from one end of Spain to the other. Pilgrims have been making this walk for over 1000 years. The walk meant different things to each person followed for this documentary. Most of the pilgrims came alone. One set of pilgrims was a young mother, her brother, and her young son. They walked the entire trail, though the mountains, the plains, and the forests, pushing a stroller!

The pilgrims made new friends and were met with great kindness along the trail. People who fed them, housed them, and washed their feet. At one point, one of the pilgrims was so moved by the generosity of at stranger that she cried tears of joy and self-reflection. She was sure that she had never treated another person with the kindness that she had received. It was a beautiful moment because instead of beating herself up for not measuring up, she looked moved and inspired. The pilgrims also experienced ecstasy, times of great mindfulness of their surroundings, love, and lots and lots of struggle with their minds and the rest of their bodies.

A beauty of the film was that not only does the walk serve as a metaphor for life but the film also shows individuals having the day to day experience of transformation over the course of a month or so. I found myself thinking about how different pilgrims might integrate their transformation into the rest of their lives and for how long would they feel transformed and connected to something much larger than themselves or the small worries that consume us on a daily basis. I know that the answer to that question is different for every pilgrim and the answer changes over time.

I am still fighting the treadmill right now. I’m not going to lie to you. I am still feeling the sting of disappointment that my dream of taking my own pilgrimage to see all of my dear friends back East is just not going to happen any time soon due to responsibilities and financial realities. I also told my husband last night that it is unlikely that I will be able to contribute enough to our family income for us to save up for a big trip for our 25th wedding anniversary, which is in 13 months. I know this is a trip on which his heart was set. It was actually supposed to happen last summer so it’s already been postponed once.

Life is like walking the Camino, so is breast cancer. I have experienced both struggle and transformation. I have been the recipient of great kindness and generosity from both old and new loved ones in my life. These are the realities than inspire actual dreams of being unprepared for life and receiving help! (Although I believe I will be able to do my own hair and not need help from my former boss at U.W.)  I have learned the powerful and gentle gifts that come from walking outside. As one of the pilgrims in the film commented after having walked for hours through heavy rain (paraphrasing), “I saw the raindrops hanging from blades of grass. Painters paint this and I get to see it.”

I know why I like documentaries. I know why I steep myself in reality. I love life. Life is transformative, powerful, spiritual, inspiring, energizing, exhausting, loud, quiet, painful, scary, and at times very very boring. But life has everything.

Meredyth and me at the movies transforming cyber friendship to something more.

Meredyth and me at the movies transforming cyber friendship to something more.

John Gottmann, a psychologist at the University of Washington wrote a book called, “The Relationship Cure.” In it are strategies for strengthening marriages and other relationships. But Dr. Gottmann is a well known expert on marriage so that emphasis of the book is there. I have read a number of his books and know that one of the things he talks about quite frequently are perpetual problems. 69% of marital arguments are never resolved. And it’s not so much that happy couples need to resolve them as they need to cope with them together.

My maternal grandparents had a long marriage of 60 years. I wish I could say that it was a happy one but it was not. They had a number of perpetual conflicts but one I distinctly remember is the fight they had about a photo that my grandmother had taken with the Hawaiian entertainer, Don Ho. They took separate vacations by the time they were in their 60’s. My grandmother would frequently visit Hawaii to see their daughter, Judy and her family. My grandmother loved Don Ho’s shows. Apparently, he used to invite the grandmothers in the audience to take a photo with him. My grandmother, who was one of the most star struck people I’ve known, of course got the photo op. But she wouldn’t show the photo to my grandfather. I don’t know how many times I heard them yell at each other over some stupid photo. Like my grandmother would have an affair with Don Ho! But the argument was not about the photo. It was about some deeper issue that they were not able to manage. But because they were of a generation, a social class, and a religion that didn’t divorce, they stayed together for many unhappy years.

John and I have been together for nearly 27 years and we have our share of perpetual arguments. And conflict is part of any close relationship. It is to be expected and to be dealt with. But never in a million years would I expect to have a perpetual argument about a plant part, more specifically soursop leaves. Soursop is a fruting tree indigenous to Mexico, Central America, and the Caribbean. I first became aware of the soursop when I was visiting one of my best friends, Cheryl, for her mother’s funeral. Cheryl’s parents were both immigrants from Trinidad. Cheryl’s Uncle Norbert, a retired ichthyologist with more than a passing visual and vocal resemblance to Harry Belafonte, first told me about soursop ice cream. It is as I understand, an acquired taste.

Many years passed and I didn’t think again about soursop. Then I was diagnosed with cancer in late May of 2012. I had my first surgery scheduled for June 27th of the same year. One day, shortly after my diagnosis, John came home with a plastic bag of leaves. One of his co-workers had learned of my breast cancer and told John that tea made from soursop leaves would shrink my tumor. In fact, he thought it would help shrink my tumor even prior to surgery, which was scheduled for a couple of weeks later.

My husband is a software engineer for Disney Internet. The co-worker who gave him the leaves also had a high tech background. He was also rather eccentric, priding himself on storing his container of almond butter upside down so that the oil was easier to stir into it and it would remain creamier. I know this sounds snarky, because it is, but my mother taught me the same practical tip about peanut butter when I was a girl, with about 1/100th of the fanfare.

John brought home the leaves with instructions to make tea. I told him, “I’m not drinking that. Your co-worker is not a physician. He’s an engineer. And he’s weird.”

Okay, so that was not the best way to handle the situation but I was overwhelmed with information, trying to be the best patient that I could be, and the soursop leaf suggestion just seemed surreal to me. Go away, surreality. I need less of you. I am swimming in this cancer Hell hole as fast as I can. I don’t need any Salvador Dali in my life right now. My reality is spinning and melting enough as it is. Now, since it was so important to John I did a literature search on the use of soursop in cancer treatment. There was no evidence to support its use that I could find and some suggestion that it could be harmful. I considered his request considered, albeit in my own feisty way and ruled out for reasonable reasons.

As you might imagine, John was none too pleased with my response. He told me, “You only trust people with credentials.” Seriously? He said this as if it were a bad thing. Months later, he changed his criticism to, “You are so Western in your thinking.” I replied, “I believe that natural substances can be potentially very powerful for good or ill. I want to see an expert not just take advice from anyone. And by the way, you know I see a naturopathic oncologist and a practitioner of oriental medicine IN ADDITION to conventional oncologists, right?”

The argument comes back from time to time without resolution. I invited John to my last two psychologist visits as we work to transition from a crisis managing couple to a different sort of life together. The kind of  life that includes the possibility of cancer and has already included past cancer. We are still dealing with the aftermath.

The soursop leaf debacle was discussed during the last session we had together. John explained why it was so important to him. He said, “I wanted to cure Elizabeth’s cancer.” John clarified that he did not think that he was a physician or that he had more expertise than my physicians. But he, as my husband, wanted to “help” in a way that was “curing” my cancer. It was important that I understand this. I had no idea. It makes no logical sense to me. Why would John be expected to “cure” my cancer. There is no cure for breast cancer. And if there were, it would not only be known by John and another software engineer. In fact, it probably WOULDN’T be known by a couple of high tech guys.

But John is my husband who loves me dearly. I know that when he is scared, he is not always “reasonable”, in fact he can be downright romantic and sometimes nearly magical in his thinking when things gets really emotionally tough. And guess what? I am not the paragon of reason at all times. I get scared, feel out of control, and have my own little irrational dance that I do.

I don’t know what it is like to be a spouse of someone with cancer. I hope never to have this experience. But I know that it is important for me to try to understand my husband’s experience. This way we can cope with the conflict of the soursop leaves, which is really conflict about neither of us having control over the disease of cancer.

But we in it shall be remembered-
We few, we happy few, we band of brothers;
For he to-day that sheds his blood with me
Shall be my brother; be he ne’er so vile,
This day shall gentle his condition;
And gentlemen in England now-a-bed
Shall think themselves accurs’d they were not here,
And hold their manhoods cheap whiles any speaks
That fought with us upon Saint Crispin’s day.

-William Shakespeare, Henry V, St. Crispin’s Day speech

Soldiers prepare for battle is different ways. Some get drunk. Some revel, party, and have sex with prostitutes. Some pray. Some cry and despair. Some are calmly resigned to whatever fate may befall them. Some do all of these things. “War is Hell” as William Tecumseh Sherman said in 1879 and most of us give soldiers at least a little latitude in the way they deal with this reality.

Preparing for a mastectomy is one kind of battle plan. Some of us cope by crying, by grieving for the loss of a culturally and personally significant body part. Grieving for the loss of being able to depend on good health. Others cope by getting angry, by cursing the barbarous  and coarse way in which breast cancer is treated, by amputating breasts, chemical warfare, and irradiating the Hell out of potentially tumorous sites.

There are many more ways to cope. I coped by writing silly posts about accidentally turning my hair orange, because I had an irrational need to be a little bit cute, to not have gray hair after my mastectomy. I wrote another post saying goodbye to my breast using all kinds of melon-related imagery. I also spent time learning about cancer and its history. Being silly actually made me feel a lot better. It took my mind off my worries and reminded me that I had the power to do something good, to make other people and myself laugh. But I never thought for a second that my mastectomy was going to be a positive experience. And I would have never predicted that I would be reading “The Emperor of All Maladies” in the pre-op area of the hospital just prior to my mastectomy. And coincidentally, I was reading the chapters on mastectomy. In a weird way it was comforting to know that the current surgeries were far less extensive than in the past. It was reassuring to see that there had been progress in breast cancer surgery. But honestly, I look back and think, “Why was I reading about cancer?” But at the time, it was the right thing to do.

I did not feel bereft, angry, or super sad in the weeks, days, or moments leading up to my mastectomy. I had anxiety, but it was relatively manageable. When it came time for surgery, I asked the anesthesiologist to knock me out as fast as possible, which she did. I did not want to belabor things. The operating room is surreal to me and I wanted to to experience the least amount of it as possible. More importantly, I knew that the faster I was knocked out the less time it would seem that I would have to wait until the surgery was done. I knew that there would be no perceived lapse of time between losing consciousness in the operating room and waking up in the recovery room.

But that was my way of coping, which worked for me. Not everyone wants to do what I did, scheduling surgeries as fast as possible, writing silly humorous posts, reading about cancer in the pre-op area, or getting knocked out as fast as possible. Moving ahead quickly, laughing when I could and reading history that put my disease in a larger context, made sense to me.

Some women prepare for a mastectomy by dancing. One woman, an OB/Gyn, prepared for her bilateral mastectomy by dancing to Beyonce with her surgical team. When I looked at the video, I thought of how dancing in the O.R. might be empowering for a surgeon. She may have never had surgery before and would have been used to being on the other side of the operating table. By dancing in the O.R. with her colleagues, she may have felt a sense of mastery that helped her prepare for her surgery.

I thought the video was cool but I understand why others thought it trivialized breast cancer or prescribed a model by which we are all compared. We should all be happy to have breast cancer. Yay, deforming surgeries! Yay, lymphedema! Yay, lack of sensation in the removed breasts! Yay, scars!

I am sad and angry that the popular media has taken this stance when it comes to breast cancer. But I do think, apart from that, each breast cancer patient needs to cope in his or her own way. Sometimes that way is dancing. And sometimes the dancing, just like mastectomy photos, are shared on the Internet.

We all prepare for battle in a different way but we are all fighting the same battle. Let’s do it together.

I have mentioned perhaps one or six hundred times that I have five brothers. One of my older brothers’ favorite “games” was pig pile. This involved announcing a victim and then having five siblings tackle and pile atop this person. For example the exclamation, “Pig pile on Liz!” was followed by my being tackled and piled on by five brothers, the oldest of whom was nearly 10 years my senior.

Pig piles seemed to be exclaimed on a very frequent basis and as the only girl of six children and the second to youngest it seemed that I was more often than not, the vortex to which the pile was attracted. A Bermuda Triangle of porcine piling, if you will. As the “baby” of the family, my brother James also spent a fair amount of time face planted on the living room floor beneath four sets of sprawling limbs shod in Converse low tops of various sizes.

Although our older brothers would admit to the pig piling, they would disagree with the metaphorical implications. They believed James and me to be spoiled. We avoided the horrors of ruler wielding nuns, whereas they all attended St. Anthony’s School, for example. Our family also had a little more money when I was growing up, not a lot more but just enough to fuel the “you’re spoiled” flames. I maintain that whatever advantages we may have had were more than offset by their mean older brother shenanigans.

James and I are only 18 months apart in age. Our next oldest sibling, John is 3 ½ years older than me and 3 ½ years younger than our next oldest brother, Mike. John was kind of caught between the “big boys” and the “little kids” of the family.

James and I spent a lot of time together. We played together a lot. We mostly got along very well though we could sometimes fight verbally and physically at which time my mom would yell, “I don’t care who started it. I’m finishing it. Go to your respective rooms!”

We played a combination of traditional boy and girl activities. We played with cars, trucks, and climbed trees. We designed obstacle courses in the yard and spent hours upon hours in the woods surrounding our house and neighborhood. We did not, however, play with Barbies or baby dolls. Remember, this was the late 60’s and early 70’s. My mom made us each two sets of Raggedy Ann and Andy dolls as well as a bunch of stuffed elephants. Due to her combination of genius and industry, we were able to play dramatic reenactments of family life with more socially acceptable dolls.

James was not really interested in formal music training, but he has an incredible ear and natural musical ability. He is also extremely funny. By the time I got to high school, I was pretty serious in my classical flute playing. He had a plastic slide whistle and would frequently copy whatever piece I was practicing in my room, complete with vibrato and when era appropriate, Baroque runs. When it wasn’t infuriating, it was hilarious.

These days my brother plays more music than me; he taught himself drums and plays with his 17 year-old son’s band. The only music we make together is the occasional game of Rock Band. The thread that carries over the years is that fact that my brother can always, I mean always, make me laugh.

He reminded me of this last Friday. James attended the requiem mass at St. James. I was kind of surprised to see him there since it was a pretty long drive for him and I think he hates to drive even more than I do. We got there an hour early to get a seat. During the time before the mass started, he was cracking me up and my laugh was echoing throughout the cathedral. When we were kids, due to different church rules, we were not allowed to talk before or obviously during mass. So with this as a back drop, his jokes have always been extra hilarious. I’d laugh, he’d say, “Now if any other family is coming tonight, they will be able to find us.” Then I laughed harder than before. Then he started singing family gossip in his version of Gregorian chant. I lost it again. Now here’s the thing about my brother. His antics are not particularly loud. He is actually a fairly introverted person whereas I am loud and gregarious. I believe he very much likes to set me up and watch the loud fireworks of my laughter, knowing that he is the one who lit the fuse.

James and I were successful for decades after our childhood in avoiding the bottom of the pig pile. Then I found out I had breast cancer and it wasn’t my older brothers that piled on top of me, it was the world in which I thought I had lived, that dissolved and crashed down on me. During the acute stage of my breast cancer treatment, there were many ongoing assessments and constant revisions of my treatment plan. When I was recuperating from surgery and bored, meaning prime time for worries to creep in, I called him, “James, I am bored. Tell me something funny.” And he did. And when I was anxious about waiting for the results of oncotype testing, which would determine whether my oncologist would recommend chemotherapy or not, I called my brother, “James, I have 20 minutes until I need to leave for my appointment. Can you tell me funny things and distract me?” And he did.

James does not show affection in traditional ways. I remember once, about ten years ago, his closing a telephone conversation by saying, “It was nice talking to you, Liz.” That was a major outpouring of verbal affection. But I know my brother loves me, thinks about me, and keeps the warmest wishes for my health. And he shows his love to me most consistently by making me laugh about today, laugh about cancer, and laugh about the things we did and experienced as kids.

For these things I will be ever grateful. James, you joined me at the bottom of the cancer pig pile.  I can’t thank you enough for doing that. If you didn’t realize it before, please realize it now that you have helped me tremendously. Thank you for making me laugh at some of my lowest and scariest times. I love you a lot and I know you return that even when it may come in the guise of slide whistled Mozart.

James must have been about 1 1/2 years old to my three years. It looks like we were having much fun in a rare Seattle-area snow.

James must have been about 1 1/2 years old to my three years. It looks like we were having much fun in a rare Seattle-area snow.

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Heart Sisters

For women living with heart disease

George Lakoff

George Lakoff has retired as Distinguished Professor of Cognitive Science and Linguistics at the University of California at Berkeley. He is now Director of the Center for the Neural Mind & Society (cnms.berkeley.edu).

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