April 2nd, 2012 §
We gather friends like seashells throughout our lives, tucking the treasures away to take with us as we walk. At different times, we appreciate different qualities of those friends; characteristics that initially attract us to someone may later be a source of discomfort. Some friendships last entire lifetimes, others are brief but intense. Friendship is an art form, one we must learn and practice daily.
I recently read Lindsey Mead’s post about friendships made during life transitions. She writes, in part: “It strikes me that it is not an accident that our truest and most lasting friendships are forged during times of life transition; we are closest to those who have shared experiences that changed who we are. Whether it was childhood, college, or becoming mothers, this is true for me.”
I’ve thought about this for weeks because while I absolutely understand what she is talking about (and do have some friends like this), I’ve also seen many of those friendships fall by the wayside. I have written before about the ways cancer and friendship sometimes don’t mix. There are friends who just can’t deal with a friend’s illness and/or death of a family member and they just disappear. In contrast, there are friends who seem to thrive on helping when there is a crisis underway.
When I was diagnosed with breast cancer at 37 I did not have any friends who had already had the disease. One of my closest friends has a son who had experienced leukemia twice and received a bone marrow transplant from his sister that saved his life. I talked with her a lot, not only because she had some sense of the fears I had but also just because she is my friend and a great listener. While I treasured that connection, though, I didn’t know anyone who had recently had a double mastectomy, chemotherapy, or needed to figure out how to balance those treatments with caring for three young children. My diagnosis preceded my involvement with Facebook and Twitter; social media would have greatly changed my experience with cancer.
I didn’t like support groups; they just weren’t right for me. Instead, I found myself talking to and finding support from a few women who used some of the same surgeons I did. We’d see each other in the waiting room at the plastic surgeon’s office when we went for weekly “fills” to add saline to the tissue expanders in our chest that were stretching the skin and making space for the implants some of us chose to receive. During chemo, nurses would often try to put younger patients in the same semi-private chemo room so they could meet and pass along wisdom and support.
Not every interaction I had led me to a friendship, of course. Sometimes in stressful situations we just need someone to help get us through. Like the stranger in the seat next to you during a turbulent airplane ride who chats with you and passes the nervous minutes, we rely on strangers to steady us when we wobble. We look for cues that everything is okay, that our experience is in the range of what might be expected.
But as my chemo and surgeries and constant doctor appointments waned, there was more room for “the rest of our lives” in the conversations I was having. One woman and I became quite close; we’d meet for coffee and spend hours talking about cancer, its effect on us, our children, our spouses. We were different kinds of people, though, in dealing with our similar cancer diagnoses. As time went on, it became more and more apparent. For example, she didn’t want to share as much information with her children about her cancer as I did. She turned to controlling food as a way to deal with her fears of a recurrence; she felt she would be immune from a recurrence if only she only ate certain foods. She wanted to train to be a Rekei healer. Eventually, though, it was our disparate attitudes about cancer that drove a wedge between us. She felt it was important to always put a sunny face on cancer; she felt it was necessary to find the joy in it. She had a “head painting party” when she went bald from chemo. She had her daughters paint her head with designs and words. She collected positive sayings into a little book that extolled the virtues of positive thinking as a key to remission success.
I could be her friend and listen but I could not agree with what she believed. The thought of someone placing their hands over my skin but not touching it and transferring energy to me (Reiki) did not work for me. I didn’t believe that food was key to avoiding cancer (after all, I had friends who had been vegetarians before they got cancer; if food were the simple key to avoiding cancer we’d have figured that one out by now, I thought). I felt control of food was a grief reaction, a way to manage fear in an uncertain world. That difference alone would not have come between us, though. I think it was the “positive thinking is the key” that I think was the biggest stumbling block. We just fundamentally differed about how to approach this disease that dominated that period in our lives.
I was strong, determined, motivated. I researched the available options and discussed them with my medical team. I pushed back when they suggested certain treatment options. I was a participant in my treatment plan. But I also felt that this thing called cancer SUCKS. And it was okay to say that. It was okay to have a bad day, or hate shaving my head. I didn’t have to have a head painting party and rejoice in the experience of going bald from chemo. It was okay for me to get halfway through shaving my own head in my garage on the morning of my second chemo and tearfully ask my father to help me finish because I couldn’t get it all. It was okay to cry, to scream, to pout for a bit. Then I picked myself up and moved on. That’s what worked for me.
Every time I got a piece of bad news or felt overwhelmed after a doctor’s appointment I allowed myself 24 hours to recover. That day I could complain, feel the injustice of it all, just react. But the next morning: it was time to get on with it. Those negative feelings were important to me. They were real. They were how I felt. And having someone constantly saying that I should only think positive rubbed me the wrong way. It was, to me, “pinkwashing”: making breast cancer seem less awful than it often is. If the only things I expressed were how “cancer is a gift” and I “had to find the beauty in it” (as she did) that denied a very real truth to me: cancer had fundamentally changed my life and those around me, and those changes weren’t always positive.
It didn’t mean there weren’t experiences or people or lessons that I appreciated. It didn’t mean I didn’t want to emerge a wiser person for having gone through it. But “cancer is a gift”? No way. I saw blogs and books where survivors wrote, “Cancer is the best thing to happen to me.” I will never say those words. I think of all of the people in the world who live with cancer every day, whose lives will be cut short by it, who have lost people they love to the disease. In my mind it diminishes their deaths and diminished quality of life to say their disease is a gift. I will not say that cancer was the best thing to happen to me.
My friend and I just sort of fell out of touch, though we have talked a few times in the last few years. We have only warm feelings for each other and wish each other good health and happiness. But we aren’t close. And what that tells me is that cancer is a part of life. You can’t make a relationship work just because you have the same disease. We have different kinds of friends for different reasons. Some we love them because they are “just like us” and share common interests or senses of humor. Some we love them precisely because they are different– they push us in ways we are not accustomed to or expose us to interests or information we otherwise might miss. In this day and age we have Twitter friends, best friends, school friends, Facebook friends, etc. We interact with a variety of people in very different ways.
I also realize that we have different levels of patience for conflicts at different times in our lives. Maybe the differences I had with my friend about cancer wouldn’t bother me so much now. Maybe we were both raw and stressed about managing our illnesses and our families. We supported each other through the hardest times and once that period was over we just moved on in different ways. Maybe that wasn’t even what really caused our relationship to cool off in the first place; after all, we didn’t part ways on bad terms, the friendship just “fizzled.” It happens.
I realize I’m more likely to make friends in the daily grind of life, and my life is full of more people I consider friends than ever before. I have a rich network of people I like, trust, and enjoy spending time with. We are not always similar, and we don’t even have to share the same beliefs all of the time. Respect and kindness are hallmarks of friendship, and every relationship for that matter. I really enjoyed thinking about the friendships I’ve made, how I’ve made them, and which ones haven’t worked. The topic of cancer and friendship is one I will continue to write about. I treasure the friends I have. I am fortunate.
Thank you to Lindsey for planting the seed for me about this topic; she and her blog frequently push me to think, learn, and grow. I’m still ruminating on this subject… and I like that.
December 14th, 2011 §
My mother retired a few years ago. For much of her adult life she was a psychologist specializing in grief and loss, death and dying. She wrote her dissertation on the impact a child’s death has on family dynamics. She used a case study method, doing in-depth interviews with surviving family members of various tragic events that happened. In one case, a house fire killed a child; in another, a baby died of SIDS.
They were heart-wrenching stories, and even as a child I could tell this was “heavy stuff.” Of course I couldn’t comprehend the magnitude of a parent’s love for his/her child until I had my own; but, I realized in reading the transcripts that grief is a multi-faceted emotion. And that loss is a process.
Having my mother work in this somewhat unusual profession was excellent training. I learned at an early age so much about sympathy, empathy, guilt, regret, and the discomfort our society feels about the subject of death. Despite the fact that it is the one thing that unites us all, the one common thread in all our lives, most people just don’t want to explore the subject of death. It makes people uncomfortable, makes them squirm, and almost universally makes people change the subject.
When you have had a death in the family, people don’t know what to say. In fact, it is likely many people won’t bring it up. Often, they worry that they will be reminding you of the tragedy, as if you have forgotten it. Anyone who has experienced a death of a loved one knows this isn’t true. The deceased person is never far from your mind, from your heart. And more often than not, you want to talk about that person. My mother taught me this. She taught me that people will never be upset if you remember and talk about the person they loved; it means their legacy lives on. Everyone wants to be remembered. You honor this desire when you talk about a deceased person.
I have said many times that growing up with my two parents was the best training for my string of illnesses through the years. While cancer has been the most serious, it has by no means been the only medical challenge I’ve had. But having a surgeon for a father and a psychologist for a mother was perfect.
I was able to digest complex medical information. When surgeons told me what needed to be done I could weigh my options methodically. I could weigh options of treatment and ask good questions to determine the best course of action for me. I could read pathology reports with ease. And then I could be insightful into my emotional response, being introspective and analytic
And being insightful and analytic about a life-threatening disease means confronting mortality. Often I hear stories of people dying without a will. In fact, often it’s only once people have children that they feel sufficiently motivated to create a will, because their love for their child (and making plans for a guardian) is the only thing that can make them confront this fear.
Often when I was in the midst of chemotherapy I wanted to have conversations about the “what ifs.”
What if they didn’t get it all.
What if the chemo doesn’t work.
What if the cancer comes back.
What if I get another (worse) kind of cancer from the chemo.
What if I die.
No one really wanted to talk about the last possibility even though it wasn’t outlandish. (Interestingly, people are very intrigued with my recurrence likelihood and mortality statistics… they view the numbers as easier to talk about in the aggregate rather than just discussing my own death).
I viewed talking about my death as responsible. I wanted to make sure Clarke understood that if I died, I wanted him to find another wife. I wanted him to be happy and loved. I wanted our children to have a mother to love them. Unsurprisingly, my greatest worries centered on my children.
I sat with a friend at coffee one day and voiced some of these concerns. With 5 children of her own, my friend is an amazing wife and mother in all respects. At first she was resistant to talk about my death with me. She didn’t want to entertain that notion. But I pressed the issue. And finally she looked me in the eye and said, “If you die, I promise I will watch over your children. I promise I will make sure they have the right person love them and raise them. I promise you that I will make sure that happens.” I think she figured it was the fastest way to shut me up. I think she figured she would agree to anything I was asking just so we could get off the subject. But at some point I think she realized that it was really important to me. I wasn’t going to let it go. And I wasn’t going to be able to get past it until I felt they would be safe and watched over. So she told me what I needed to hear. And I know she meant what she said.
Like a balloon slowly deflating, I felt my body go lax. Finally, I could let it go. She had promised me she would do for me what I wanted. I could trust her, and I could move my worry to something else. She did more for me by making this promise than she will ever know.
Here is one of the things I’ve learned from my mother: When someone you love is talking about death, don’t change the subject. Don’t trivialize their worries. Don’t say, “Let’s not talk about that now.” If they want to talk about it, it means it’s important to them, it’s weighing on them.
Focus on the fact that while we don’t need to sit around thinking about death all the time, there unfortunately might be times in our lives when we might not be able to think of anything else. If you haven’t experienced that, I applaud you. But sooner or later, you or someone you love will.
November 20th, 2011 §
I am re-posting this piece now that Katie’s book is available in paperback. So many of these questions have been swirling around in my mind (Hmmm, I sound like Herman Cain?) while I try to decide whether to write a book. I think about why I write, what I can contribute, if there is an audience for the things I think about. I do write for you, my readers, and am so thankful you take the time to read what I say. But I also realize that I write for my children.
With the sudden death of my mother-in-law two years ago, I realize that “things left unsaid” are a heartbreaking prospect to me. When I was diagnosed with breast cancer nearly five years ago I made many decisions about treatment with the goal of living as many years as I could to parent my three young children. I chose more aggressive surgeries (including an oophorectomy) because I felt they would give me better odds at not only avoiding a recurrence, but surviving.
I realize as I age that my memory is fickle. I make endless lists of items I need to buy and things I need to do. Similarly, I find I rely on writing down my feelings so that I can look back and accurately remember the emotional experiences I’ve had. I worry that if I don’t, not only with those memories be lost to me, but also they will be lost for my children. In the crazy, hectic life of raising three children there is so much that goes unsaid, not only to the kids, but also to my husband. It’s not the actions of driving to football practice or tennis lessons that make me unique; anyone can do those tasks. It’s the thoughts in my head, the way I express them on the page, that are mine, and mine alone. If I don’t express my thoughts for someone else to read I cannot truly be known.
Most days I think my thoughts get lost. I have them here as an insurance policy of sorts. I write because it is my explanation of who I really am… to my children, to my family, and to my readers.
My discussion of Katie Rosman’s book, originally published June 24, 2010
There comes a point in your life when you realize that your parents are people too. Not just chaffeurs, laundresses, baseball-catchers, etc.– but people. And when that happens, it is a lightbulb moment, a moment in which a parent’s humanity, flaws, and individuality come into focus.
If you are lucky, like I am, you get a window into that world via an adult relationship with your parents. In this domain you start to learn more about them; you see them through the eyes of their friends, their employer, their spouse, and their other children.
Yesterday I sat transfixed reading Katherine Rosman’s book If You Knew Suzy: A Mother, A Daughter, A Reporter’s Notebook cover to cover. The book arrived at noon and at 11:00 last night I shut the back cover and went to sleep. But by the middle of the night I was up again, thinking about it.
I had read an excerpt of the book in a magazine and had already been following Katie on Twitter. I knew this was going to be a powerful book for me, and I was right. Katie is a columnist for The Wall Street Journal and went on a mission to learn about her mother after her mother died (on today’s date in 2005) from lung cancer. In an attempt to construct a completed puzzle of who her mother was, Katie travels around the country to talk with those who knew her mother: a golf caddy, some of her Pilates students, her doctors, and even people who interacted with Suzy via Ebay when she started buying up decorative glass after her diagnosis.
Katie learns a lot about her mother; she is able to round out the picture of who her mother was as a friend, an inspiration, a wife, a mother, a strong and humorous woman with an intense, fighting spirit. These revelations sit amidst the narrative of Katie’s experience watching her mother going through treatment in both Arizona and New York, ultimately dying at home one night while Katie and some family members are asleep in another room.
I teared up many times during my afternoon getting to know not only Suzy, but also Katie and her sister Lizzie. There were so many parts of the book that affected me. The main themes that really had the mental gears going were those of fear, regret, control, and wonder.
I fear that what happened to Suzy will happen to me:
My cancer will return.
I will have to leave the ones I love.
I will go “unknown.”
My children and my spouse will have to care for me.
My needs will impinge on their worlds.
The day-to-day caretaking will overshadow my life, and who I was.
I will die before I have done all that I want to do, see all that I want to see.
As I read the book I realized the tribute Katie has created to her mother. As a mother of three children myself, I am so sad that Suzy did not live to see this accomplishment (of course, it was Suzy’s death that spurred the project, so it is an inherent Catch-22). Suzy loved to brag about Katie’s accomplishments; I can only imagine if she could have walked around her daily life bragging that her daughter had written a book about her… and a loving one at that.
Rosman has not been without critics as she went on this fact-finding mission in true reporter-style. One dinner party guest she talked with said, ” … you really have no way of knowing what, if anything, any of your discoveries signify.” True: I wondered as others have, where Suzy’s dearest friends were… but where is the mystery in that? To me, Rosman’s book is “significant” (in the words of the guest) because it shows how it is often those with whom we are only tangentially connected, those with whom we may have a unidimensional relationship (a golf caddy, an Ebay seller, a Pilates student) may be the ones we confide in the most. For example, while Katie was researching, she found that her mother had talked with relative strangers about her fear of dying, but rarely (if ever) had extended conversations about the topic with her own children.
It’s precisely the fact that some people find it easier to tell the stranger next to them on the airplane things that they conceal from their own family that makes Katie’s story so accessible. What do her discoveries signify? For me it was less about the details Katie learned about her mother. For me, the story of her mother’s death, the process of dying, the resilient spirit that refuses to give in, the ways in which our health care system and doctors think about and react to patients’ physical and emotional needs– all of these are significant. The things left unsaid as a woman dies of cancer, the people she leaves behind who mourn her loss, the way one person can affect the lives of others in a unique way… these are things that are “significant.”
I woke up in the middle of the night thinking about the book. My head spun with all of the emotions it raised in me. I think that part of the reason writing has become so important to me is precisely because I do realize that we can die at any moment. And if you don’t have an author in the family who might undertake an enormous project as Katie did, where will that explanation of who you were — what you thought — come from?
Is my writing an extension of my desire to control things when cancer has taken away so much of this ability?
Is part of the reason I write an attempt to document my thoughts, my perspective for after I am gone… am I, in a smaller way, trying to do for myself what Katie did for her mother?
If I don’t do it, who will do it for me?
And in my odd way of thinking, am I trying to save anyone the considerable effort of having to work to figure out who I was– deep down?
My blog has the title “You’d Never Know”: I am telling you things about myself, my worldview, and my life, that you would otherwise have no knowledge of. One of the things people say to me all the time is, “You’d never know to look at you that you had cancer.” After hearing this comment repeatedly I realized that much of our lives are like that:
If we don’t tell someone — share our feelings and experiences — are our lives the proverbial trees falling (unheard) in the forest?
What if you die without being truly understood?
Would that be a life wasted?
If you don’t say things for yourself can you count on others to express them for you?
Further, can anyone really know anyone else in her entirety?
After a loved one dies, there always seems to be at least one mystery person: an individual contacts the family by email, phone, or in person to say, “I knew your loved one: this is how I knew her, this is what I remember about her, and this is what she meant to me.” I know that this happened when Barbara (my beloved mother-in-law) died suddenly last fall. There are stories to be told, memories to be shared. The living gain knowledge about their loved one. Most often, I think families find these insights comforting and informative.
Katie did the work: she’s made a tribute to her mother that will endure not only in its documentation of the person her mother was (and she was quite a character!) but also in sharing her with all of us. Even after her death, Suzy has the lovely ability to inspire, to entertain, to be present.
I could talk more about the book, Katie’s wonderful writing, and cancer, but I would rather you read it for yourself. I’m still processing it all, making sense of this disease and how it affects families, and being sad that Katie’s children didn’t get to know their grandmother. Katie did have the joy of telling her mother she was pregnant with her first child, but Suzy did not live long enough to see her grandson born. In a heartwarming gesture, Katie names her son Ariel, derived from Suzy’s Hebrew name Ariella Chaya.
I thank Katie for sharing her mother with me, with us. As a writer I learned a lot from reading this book. I’ve said many times recently that “we don’t need another memoir.” I was wrong. That’s like saying, “I don’t need to meet anyone new. I don’t need another friend.” Truth is, there are many special people. Katie and Suzy Rosman are two of them.
October 18th, 2011 §
For those of you who missed it yesterday, click here to the USA Today piece that Liz Szabo did about the decision for some women with breast cancer to have a mastectomy.
Everyone was so supportive in sharing publication day with me… thank you. The enthusiasm from Facebook and Twitter friends was truly touching.
The kids feel like celebrities! The photo on the cover page of the Life section was huge and the photographer captured a great laugh with the kids. The children were so patient during the 1.5 hour photo shoot.
I’m still working on a big post with more about the subject of mastectomies for breast cancer. I promise to have that up as soon as I can.
The response was overwhelmingly positive but there were a few criticisms of my decision. Here is what I reply:
I don’t believe that my decision to have a double mastectomy was a guarantee that my cancer won’t come back. There was much I could not control about cancer; some of that uncertainty still remains. However, how you treat your cancer, live with it, and monitor it are things you can control.
The shame is that when observers (many whom have no direct experience with cancer) decide to be critical of people with the disease, survivors may be afraid to tell their stories. Cancer awareness– true awareness– can only happen when men and women with breast cancer feel comfortable enough to talk about their experiences, their choices, and their disease without fear of being challenged.
I will continue to tell my story.
September 27th, 2011 §
A previous discussion about inspiration and setting an example provoked my friend Laura to write to me, “If something ever happens to me where I have to dig deep to find that strength that you have found (and shown), I will think of you. Often. And re-read your blog. Often.”
This was the highest compliment and I appreciated those words immensely. Her words got me thinking.
So many of my friends have mothers who’ve had cancer. In college, my two closest friends, Alex and Deb, both had mothers who had breast cancer. Somewhere in that experience was an expectation for them that someday, inevitably, they would have it too.
It was many years before my own mother did. And then right on her heels, so did I. Before Alex and Deb did. And so, like my mother was for me (see Everyone Needs a Trailbreaker), I suddenly became the trailbreaker for my best friends.
I’ve gone through some cancer scares with friends and acquaintances over the past three years. I’ve sat in waiting rooms, taken phone calls, written emails, met with women in person. I’ve helped friends, strangers, and friends of friends.
When I was young someone teasingly called me a walking encyclopedia. Somehow it still seems true. My husband only half-jokingly shakes his head when he hears some of the questions people ask me. He sometimes says, “They do know you’re not a doctor, right?”
I know that I’m the first of my friends to have breast cancer. And have it “bad.” The whole nine yards. That experience comes with responsibility. I know that having cancer at 37 means that I will be that resource, that friend, that support system.
In the future, others will need me. Friends will ask me how to help, what to do, what things mean.
There is a lot of pressure coming my way and I think about it already: what if I let them down?
That’s the kind of person I am.
I am already worried not only about getting through my own experience; I’m worried how I can help my friends if their time comes.
And statistically it will.
I’m worried who will be next.
I’m angry someone will be next.
I want to be the lightning rod.
I want to take in on for them.
I want to protect them.
Laura, I want to protect you:
I don’t want you to have to read my blog for strength.
I want you to read it because you want a window into a world you never have experienced. And never will.
That is my greatest hope, my greatest dream.
If I could sleep, that would be my dream:
To keep you all safe.
July 14th, 2011 §
Sunday will be the four year anniversary of the day I had breast recontruction surgery after cancer. My tissue expanders were removed once chemotherapy was over and my silicone implants were put in. Last week I had my annual visit to my plastic/reconstructive surgeon and received the all-clear to now have a visit every two years. It’s always gratifying when the time in between visits gets longer; I remember when I was there at least once a week during the reconstruction process.
“Did you know it’s been four years since your surgery?” my surgeon asked. Immediately he chuckled, “Of course you know that,” he said, realizing my mental calendar was certainly more precise than his– of course I marked the days off in my head.
Whenever I sit in a waiting room I am instantly transported to that place and time. I sit and watch patients walking in and walking out. I can tell by hearing what the time interval until their next appointment what stage of treatment they are in.
I sit in the chair, the same one I did four years ago.
It’s the same chair, but I am not the same person.
My body is not the same.
There is continuity in that chair.
There is a story it tells me.
I wrote this piece to the next person who sits in that chair.
………………………….
That chair you’re sitting in?
I’ve sat in it too.
In waiting rooms. Chemo rooms. Prep rooms. For tests. Surgeries. Procedures. Inpatient. Outpatient. Emergency visits. Routine visits. Urgent visits. To see generalists. Specialists. Surgeons. Alone. With friends. With family members. As a new patient. Established patient. Good news. Bad news. I’ve left with new scars. Prescriptions. Appointments. Words of wisdom. Theories. Guesses. Opinions. Statistics. Charts. Plans. Tests. Words of assurance. More bloodwork. Nothing new. Nothing gained. Nothing but a bill.
That feeling you’re having?
I’ve had it too.
Shock. Disbelief. Denial. Grief. Anger. Frustration. Numbness. Sadness. Resignation. Confusion. Consternation. Curiosity. Determination. Dread. Anxiety. Guilt. Regret. Loss. Pain. Emptiness. Embarrassment. Shame. Loneliness.
That day you’re dreading?
I’ve dreaded it too.
The first time you speak the words, “I have cancer.” The first time you hear “Mommy has cancer.” The day you wear a pink shirt instead of a white shirt. Anniversary day. Chemo day. Surgery day. Scan day. Decision day. Baldness day. The day the options run out.
Those reactions you’re getting?
I’ve had them too.
Stares. Questions. Pity. Blank looks. Insensitivity. Jaw-dropping comments.
Those side effects you dread?
I’ve dreaded them too.
Nausea. Vomiting. Pain. Broken bones. Weakened heart. Baldness. Hair loss. Everywhere. Unrelenting runny nose. Fatigue. Depression. Hot flashes. Insomnia. Night sweats. Migraines. Loss of appetite. Loss of libido. Loss of breasts. Phantom pain. Infection. Fluid accumulation. Bone pain. Neuropathy. Numbness. Joint pain. Taste changes. Weight gain. Weight loss. Some of them happen. Some don’t. Eventually, though? You name it. It changes. Temporarily anyway.
That embarrassment you’re feeling?
I’ve felt it too.
Buying a swimsuit. Getting a tight-fitting shirt stuck on my body in the dressing room. Having a child say “You don’t have any eyebrows, do you?” Wearing a scarf. Day after day. Wondering about wearing a wig because it’s windy outside and it might not stay on.
That fear you’re suppressing?
I’ve squelched it too.
Will this kill me? How bad is chemo going to be? How am I going to manage 3 kids and get through it? Will my cancer come back and take me away from my life? Will it make the quality of life I have left so bad I won’t want to be here anymore? Is this pain in my back a recurrence? Do I need to call a doctor? If it comes back would I do any more chemo or is this as much fight as I’ve got in me? What is worse: the disease or the treatment?
That day you’re yearning for?
I’ve celebrated it too.
“Your counts are good” day. “Your x-ray is clear” day. “Now you can go longer between appointments” day. “See you in a year”day. First-sign-of-hair day. First-day-without-covering-your-head day. First taste of food day. First Monday chemo-isn’t-in-the-calendar day. Expanders-out, implants-in day. First walk-without-being-tired day. First game-of-catch-with-the-kids day. First day out for lunch with friends day. First haircut day. “Hey, I went a whole day without thinking about cancer” day. “Someone asked me how I’m doing, I said ‘fine’ and I meant it” day.
That hope you have?
I have it too:
A cure.
Don’t you think that would be amazing?
I think so too.
July 5th, 2011 §
I met a woman who told me something shocking.
It wasn’t that she’d had breast cancer.
Or had a double mastectomy with the TRAM flap procedure for reconstruction.
Or that she’d had chemotherapy.
What made my jaw literally drop open was her statement that she has never told the younger two of her four children that she’s had cancer.
Ever.
Not when she was diagnosed.
Or recovering from any of her surgeries.
Or undergoing chemotherapy.
She never told them.
To this day– five years later– they do not know.
I like to think I’m pretty open-minded. But I confess, it took a lot of self-control not to blurt out, “I think that is a big mistake.”
I’m a big believer in being open and honest with your children about having cancer. My caveat, using common sense, is that you should only give them age-appropriate information.
When I was diagnosed with breast cancer Tristan was six months old. Of course he didn’t understand what cancer was. Colin, age 5 at the time, understood some of what was happening. I explained to him what cancer meant, that I was going to need surgery to take the cancer out, where the cancer was, what chemo was, what it would do to my appearance and energy level. Using words like “I will be more tired than I usually am. I might feel sick to my stomach and need to rest more” explained things in words he could understand.
Age 8 and the oldest at the time, Paige understood the most when I was diagnosed. She had bigger questions and well as concerns about me (“Will I get it too? Who is going to take care of us? Are you going to be okay?”).
It’s not that I think small children always understand everything. But they are certainly able to sense that things are not “normal.” They can tell when people are acting strange. I think it’s important that they know there is a reason for that change. Children have a tendency to be egocentric; they think that everything is their fault. They may think they have done something wrong if everything at home feels different.
The woman told me she didn’t want to worry her children. She thought it “unnecessary” to tell them. She said when they got older she would explain it. I argue that by keeping her cancer a secret, she runs the risk of doing the opposite: making cancer seem scarier and more worrisome.
If children hear words like “cancer” casually in conversation as they grow up they will be comfortable with them; in that way, they won’t be frightened of them. If they understand the truth of the diagnosis and treatment they are dealing with reality. By hiding the truth, the unintended consequence is to make it seem worse than it is. By not telling children, and waiting until they are older, it reinforces the idea that cancer IS something “big and scary.” After all, if it weren’t, you would have told them already.
I think being secretive is a step backward to the days when cancer was only talked about in hushed tones: the “C” word or “a long illness.” These concepts might seem primitive to us now, but it wasn’t long ago that these vague labels were the norm. By showing our children, our friends, our neighbors, that we can live with cancer, live after cancer, we put cancer in its rightful place.
To me, the deception that goes on to lie to children about where you are going, what you are doing is lying about a fundamental part of your life. Cancer isn’t all I am — but it is a part. And it’s an important part of my medical history. If for the past 3 years I’d covered up where I was going and what I was doing, the web of deceit would have been extensive. I can’t (and won’t) live a life like that.
Further, I think it’s a poor example to set for my children.
Lying,
covering up information,
and omitting important information are all wrong.
With rare exception, the truth is always best.
Presented in the proper way,
commensurate with a child’s age,
a difficult situation can be not only tolerable but surmountable.
It takes work. It takes parents who can manage not only their own emotions about having cancer but also be involved with helping their children cope with it. It’s more work, but it’s worth it.
I think that woman made a mistake. I think her decision was harmful. I am sure she thinks she was doing her children a favor. I totally disagree. I think keeping this type of information from children “in their own best interest” is rarely– if ever– the right thing to do.
April 9, 2010
June 30th, 2011 §
It’s not that I didn’t like my right breast.
It hadn’t really ever done anything “bad” to me, except for the few times when it wouldn’t keep up with the milk production of the left one during the months when I nursed my children.
I didn’t harbor any negative feelings for it. In fact, I didn’t think about my breasts much at all except to chuckle at the sagging that inevitably comes with middle age and three pregnancies.
But all of that changed with four words: You have breast cancer.
The cancer was in my left breast: I needed a mastectomy. But what about the “good” breast?
Note the popular lingo: the non-cancerous breast quickly becomes tagged as the good one– like a good child who behaves and does what it’s told, the non-cancerous breast has faithfully done its duty and stayed healthy.
The left breast?
Well, that’s the traitor.
I had a decision: what would I do with the right breast?
Keep it?
Toss it out in biohazard trash?
With four words, that part of my body became a liability. I didn’t want that breast anymore, thanks. I’d rather have no breasts than one. Mentally, it was much easier to me to part with both, not live the rest of my life in fear of what might be lurking in that tissue.
To be clear, surgeons and oncologists explained that in their opinion, my chance of getting cancer in the right breast was no higher than my chance of getting breast cancer in the first place; I wasn’t necessarily at increased risk of breast cancer on the other side.
But:
I had already been a statistical anomaly.
I had gotten cancer at 37.
I was BRCA-1 and 2 negative (but didn’t know it at the time).
In my mind I thought:
Go ahead and tell me that, but I don’t believe you.
And so I heard their words.
I understood their words.
But I didn’t believe them.
And time proved me right.
I opted for bilateral mastectomies. And when the pathology came back, there was abnormal tube proliferation and some cell dysplasia. Things were awry in my right breast even though nothing had shown up on the mammogram.
Now, yes, eventually I would have found the problems when the cell proliferation got large enough to be detected on a mammogram or MRI. And maybe my chemotherapy would have gotten these cells anyway.
But are you really going to take that chance?
I wasn’t.
Body parts become liabilities.
My perspective about my body has changed so much in the last four years. My body itself has changed so much too.
I’m not exaggerating when I say that, like aging itself, the side effects of removing my ovaries one year after my mastectomies has changed almost everything about my health as I know it.
I went to the kitchen just now and pulled out my binder of cancer records to double-check my pathology report to write this blogpost.
And there it says, quite plainly, that my cancer was 1 mm from the deep margin (chest wall).
One millimeter.
A hair’s diameter.
A grain of sugar.
It always takes my breath away.
A millimeter.
So many people link their happiness to pounds, or inches, or dollars.
Me?
I think part of my future might hinge on that millimeter.
I’m counting on it.
And moving forward.
June 12th, 2011 §
Cancer is not one disease and there is more than one way of coping with a diagnosis. While some patients research every aspect of their illness, treatment, and prognosis, others would rather have their physicians sift through information and chart a particular course of action for them.
While many people with cancer or other illnesses may agree on what they like to hear (or not hear) from friends, family, and acquaintances, Bruce Feiler’s New York Times piece “‘You Look Great’ and Other Lies” falls victim to assuming that just because it is true for Bruce means it’s true for all. While he does use “many” and “most” throughout the piece, his list is prefaced by “Six Things You Should Never Say to a Friend (or Relative or Colleague) Who’s Sick.” If Feiler’s piece were a blogpost I might not feel the need to react in such detail; however, as a highly visible piece, I suspect there are many readers saying to themselves, “I say a lot of those things… was I really that wrong?” All day yesterday my Twitter followers were asking my opinion about the piece; they wondered if he was right.
I recognize that there is a lot of good advice in his piece, and I want to acknowledge how hard it is to write a short article about such an important and personal topic. I think that opening up this subject to a larger discussion may allow readers to see the variation in reactions: remarks are interpreted in a variety of ways by different listeners. Even the same remark may be interpreted as harmless one day and loaded the next; hard and fast rules are unlikely to apply.
Thus far on my blog I have resisted writing rules about what people should and should not say. Readers have forwarded many such lists to me for my opinion. At the time I was diagnosed, I was the first of my friends to have cancer; I didn’t have anyone I could ask for advice.
I was often annoyed with the comments people made. I felt some were just silly (“It must be nice to be able to have time to rest in bed during chemo”) while other comments seemed hurtful or downright rude (“Is your cancer what is going kill you?”). While I was frequently upset or offended by statements people made, I didn’t articulate a list like Feiler’s. Why? While I reacted negatively to some things people said, I still felt that in most cases their intentions were good. That is, they might have made comments that were not helpful, but they weren’t making them to be hurtful. They might have been nervous, naïve, or clueless, but they weren’t trying to be cruel.
While the hope is that people will think before they speak, saying “these are the things you must not say” will make people even more self-conscious. The danger is that people will do something even worse than the things Feiler mentions: they may remain silent and not offer any help or express any affection at all for fear of saying the wrong thing.
Many people don’t know what to say. It’s wonderful to have some suggestions of what you should say as Feiler does (and I think he’s spot-on with every one of those). The danger of criticizing in harsh terms is that every person you’ve interacted with then feels the need to ask, “Are you talking about me?” At that point you are put in the position of consoling those who should be helping you. Frequently I found myself in the position of comforting others about my own diagnosis or that of one of their relatives. My recommendation is to avoid telling a person with cancer about your friend or relative who either had it and has lived 20 years (implies their fears are unwarranted) or that a person you know died a terrible death (discouraging).
One main criticism of Feiler’s piece is that it makes no distinction of or allowance for social proximity. That is, the expectations we have for what others should say to or do for us varies in relation to how close we are to them. It may be reasonable to expect a spouse or best friend to clean your refrigerator but not for your child’s teacher to do so.
Now, on to more actual details of the piece.
It’s interesting that Feiler assumes the offer of food is innocuous. He claims food was one of his great helps and implies that this is a safe way to offer help to those in need. I explicitly forbade food to be brought to my house. I didn’t want anyone spending time or money preparing or purchasing food that might not get eaten. One friend reported that while her son was being treated for leukemia, well-wishers sent so many lasagnas that her kids could no longer look at the dish after a few weeks of receiving them. Similarly, smells eminating from food can often be offensive during chemotherapy.
Feiler starts his list of helpful speech and behavior by outlawing the questions, “What can I do to help?” and “My thoughts and prayers are with you.” he tells readers, “Just do something for the patient… Want to be really helpful? Clean out my fridge, replace my light bulbs, unpot my dead plants, change my oil.” Gee, I’d like someone to do those things for me even when I am not sick!
These things are not only unrealistic in most cases (live far away, don’t have a spare key to the house) but also impractical. These sound like suggestions for close family and spouses/partners. Perhaps saying, “Where’s your to do list—I’ll pick something off of that” might be more reasonable. I don’t want anyone in my house, actually, and how can you know what to do unless you ask?
To me, asking “what can I do to help” is not the same to me as “Call if I can do anything.” His point is that it “puts the burden back” on the person who is sick to come up with a way to help. I predict most people have their mental “to do” list available and could reel off a few suggestions to those who would offer. Close friends can just “do” or insist in a way that others can’t. I do agree with him that being more forceful about helping is the right way to go, just not to the degree he does. Taking children for playdates (phrased as “We’d love to have your child over, please let us/we won’t take no for an answer”) is a lot more likely to receive approval than, “What can I do to help?”
Further, those who are ill may take pride in being able to accomplish a task themselves. I wanted to be able to do small tasts to contribute to taking care of the house. It’s not realistic to think an acquaintance is going to march into your home and scrub your toilet; after all, it’s hard enough to get those who actually make the mess and live there to do it. Arranging for a cleaning service to come might be more helpful. Often it’s easier to allow strangers into the home than friends; and it could be done while the person it at chemo treatment, for example. (with care taken about fumes and smells that might trigger nausea). Offering to do grocery shopping or be available to receive an online grocery delivery might be good, too. There is a whole post I could write about suggestions for how to help a friend.
Feiler also outlaws “My thoughts and prayers are with you.” He writes, “In my experience, some people think about you, which is nice. Others pray for you, which is equally comforting. But the majority of people who say they’re sending ‘thoughts and prayers’ are just falling back on a mindless cliché.”
First, I think this is an extrememly personal reaction. How a person deals with severe illness is highly charged. In my case, I don’t want your prayers under any circumstances. I don’t believe in God and I don’t want you to pray for me. I didn’t tell anyone not to do it; after all, it made them feel that they were doing something for me. However, it also smacked of illogicality; why pray now? The damage is done: I’ve got cancer. I don’t believe that your prayers will make the difference as to whether I live or die from it; after all, I am quite sure that the people who die from cancer every day have people praying for them, too. Feiler assumes again that what is good for him is good for all– not all people with cancer will find prayers comforting. It’s a bit confusing because he also says it’s something not to say; I’m not sure where he really falls on this matter.
Second, when someone says, “My thoughts are with you” (a phrase I use often and am not about to stop) I think it can be nice. When you live far away or don’t know someone well it can an expression said with genuine concern; when said to a close friend or family member it expresses affection while feeling powerless in such a terrible situation. I believe that to be true.
I counsel: empty phrases said without emotional authenticity are likely to fall flat with the recipient. But I think telling people not to say, “I’m thinking of you” is extreme.
I wholeheartedly agree with his #3 (“Did you try that mango colonic I recommended?”), #4 (“Everything will be o.k.”), and #5 (“How are we today?”): double emphasis on numbers 3 and 4.
Then we come to #6 (“You look great”). This is the one the title points to as “a lie.” One major criticism of the piece is that “You look great” is not necessarily a lie (and I believe the compliment most often is true). I think what Feiler is sensitive to is that we have no way of knowing if it is in our particular case that someone is lying or not. Even in the midst of terrible sickness it’s likely the speaker means “considering everything you’ve been through” which can still be an honest compliment. Also, many people appreciate being told they look great, even if the truth is questionable. Some days it doesn’t take much to lift your spirits. In the piece Jennifer Goodman Linn said, “When people comment on my appearance it reminds me that I don’t look good.” She is convinced she looks bad and doubts the honesty of the comment. Why can’t it be that she does look good? Why isn’t there room to compliment anyone on how they are dealing with things?
As I see it the real core of the problem is that “you look great” might imply that “you can’t be that sick.” Observers are trying to reconcile the disease inside with the appearance outside. When pictures of Gabby Giffords emerged yesterday, for example, everyone including newspapers commented “how great she looks.” I did not. While I thought it, and believe it (I guess Ms. Linn would find that impossible to believe), I didn’t say it because I was not trying to undermine the seriousness of her condition. Just because she looks good doesn’t mean she isn’t terribly affected cognitively and physically by the aftermath of being shot in the head. Just like when your hair grows back after chemo and everyone takes this to mean you are “all better,” serious medical situations can be present even when not visible to outsiders.
I loved when people told me I looked good. I looked sick, of course. But the effort I took to put makeup on or compliments to how I wore a scarf to coordinate with my outfit were nice. On a day I felt sad I always loved a compliment.
The irony is that illnesses that are invisible can be harder to live with. “I know you are sick but you look so healthy” is not helpful. It’s always disconcerting when someone who “looks healthy” is diagnosed with a serious disease or dies suddenly. These situations strike fear in all of us because being healthy makes us feel protected. When someone looks like us but is concealing serious sickness it can make us feel vulnerable– but that is not the patient’s problem. I again revert to the advice that you should say what you honestly believe. I don’t think it’s always a lie and I don’t think it should be on the list of outlawed expressions.
“People reminded me that I had a free ‘No’ clause whenever I needed it,” said one person in Feiler’s piece. My advice: let those who need to use it do so. When a friend got her own diagnosis of breast cancer, she assumed she would easily be able to opt out of being a Girl Scout troop leader during surgery and chemotherapy time. Instead, she was not given a gracious “pass” and no one offered to fill her spot (that would have been one way to really help). Instead, “But you’re still going to be able to be a leader, right?” was the reaction that met her.
I totally agree with the suggestions Feiler makes for things to say (Don’t write me back, I should be going now, Would you like some gossip, and I love you). I think there are more, but I think he’s got some perfect ones to start a list there.
Elsewhere I’ve asked readers to contribute the strangest/rudest things people said to them when they (or a loved one) had a serious illness. Some of the responses there are definitely statments I would caution people to think twice about saying. I also heard:
“Is it terminal?”
“What’s your prognosis?”
“It could be worse, you know.”
“Everything happens for a reason.”
“It’s all part of a larger plan.”
“Now that you’ve been through this you’re due for some good things to happen.”
“I’m sure it’s fine/I’m sure it’s nothing” (similar to Feiler’s “Everything will be okay”). And there are many more.
There is an anger that can divide friends and family once a person is diagnosed with an illness. “You just don’t get it” or “You wouldn’t understand” can be a common refrain whether silently or outwardly expressed. The same words spoken by a friend/acquaintance/colleague may be interpreted differently depending on the day or mood of the patient. I quickly learned that physical pain and emotional agony trumped all; I had little patience or care for others when I was hurting. I learned to withdraw during those times or only discuss it with those who did understand. My hypersensitivity was undestandable but not necessarily easy to be around. The desire to be understood is part of how the ill connect, attract, and cling to one another. The fact that most people with a serious illness can rattle off offensive or ineffectual questions or comments made to them means they are important.
Feiler’s piece struck me as one in which his feelings of “you just don’t get it” were overwhelming and raw. While much of the advice is good, in the end I am critical of him for the same reason I didn’t make such a list during treatment: if you go around telling people how what they did was so wrong all the time, and things they should never do, soon enough they won’t say anything for fear of disappointing or offending you. In those cases you may lose people who may have been well-intentioned. Sometimes forgiveness and compassion need to go out from the person who is sick and not just flow to them. I guess I shouldn’t say that will work for everyone, but that’s what works for me.
June 6th, 2011 §
The rest of my family is coming back today. After a week in Jackson Hole, Clarke and Paige and Colin will return tonight, just in time for Colin’s 7th birthday tomorrow.
The refrigerator has been really empty this week. With just a 2-year old and me, it doesn’t take much to keep us fed. So I took the opportunity this morning to clean out the refrigerator and freezer– really clean them. Take everything out, throw away all the junk, the ice cream that now is just ice crystals. I tossed all of those “placeholders” that you never eat, they just take up room.
As I sprayed a wonderful new lemon verbena spray on the glass shelves, I start contemplating this week. The last seven days were my week to recover from surgery (an oophorectomy), to get stronger, to close out my year. I know I made the right decision not to join my family in Wyoming this year. It’s been a reflective time, a time for my soul to be quiet and heal. I think it’s done that a little. I think another week might help. I’ve loved my one-on-one time with Tristan; we have a nice little routine going, and I feel like he’s grown up this week.
But as the new year starts, of course, we are pushed to reflect on ourselves, to make ourselves better in the next 365 days. We reflexively reflect on whether we’ve kept any of those elusive resolutions from the previous year. December 31st is supposed to bring “closure.” In the arbitrary distinction between one year and the next (after all, why is there really a difference between the last day of 2008 and the first of 2009 any more so than any other passage of midnight on any other day of the year), we are pushed to wipe the slate clean and start anew. As I cleaned the house this week, purging old canned goods, papers, clothing, and sprucing up the house I found I was instinctively doing this: “Out with the old, in with the new.”
This annual rehabilitation, then, is supposed to be psychological and physical.
Most of our resolutions are about ways we want to be better, inside and out: concentrating on the new and gaining closure on the past.
One of my dearest friends wrote to me in an email last week, “And yet, you can no more gain ‘closure’ on life-altering events than you can erase moments from your memory.” I read that sentence many times. It is beautiful, and true.
I remember well when my friend Alex’s father died of cancer almost 10 years ago. She was so busy with all of the things that needed to be done, the arrangements that needed to be made, and taking care of her mother who needed constant attention and support. I remember wondering when she was going to grieve. I worried that his death, and his absence from her life, would fester and haunt her.
As I scrubbed the refrigerator shelves this morning I realized that you never grieve the way you think you should.
No one really just sits alone and thinks about the tragedies that befall them.
It’s too painful, too powerful to take that in as one big gulp.
Instead, what we do is weave it into the tapestry of our consciousness.
We make it part of our daily life, quiet, but present.
Maybe at this time of year we reflect more than usual, and maybe that’s why the holidays are painful as we take stock of what we’ve lost during the year and what we’ve gained.
Where that balance lands says a lot.
A year ago I thought surely 2008 would be better than 2007. It really didn’t turn out that way. But I am doggedly optimistic even when I’ve been been proven wrong so many times. I do not believe that there is a “justice meter” in the universe that is going to now dump things on someone else and leave me alone for a year. But maybe as my own tapestry of consciousness keeps getting woven, it will be stronger and more resilient to keep me going this year.
At least I’m starting with a clean refrigerator.
originally written January 2, 2009. Modified June 6, 2011
June 3rd, 2011 §
More often than not, cancer creeps into conversations with friends. New friends, old friends.
I don’t think I’m obsessed with it. I don’t have to talk about it. Why does it come up?
Is there a cancer radar?
Is it just that when cancer folks are together we let our guard down to share?
Do we want to compare notes and try to get information from each other?
Probably all of the above.
Here’s also where I think it comes from: talking about illness is grounding. It puts the emphasis where it should be. I have many friends who have family members who either have had or currently have cancer. We’re a club. There is a support we can provide for each other, a language we can speak. Stages, grades, blood counts, oncologists, PET scans, MRIs, tumor markers… and on it goes. I really think I should get credit for CSL… cancer as a second language.
I like people who “get it”; I find more and more that I am naturally drawn to them. I’m rarely surprised to find that new friends of mine have had some type of hardship in their lives.
Maybe it’s just that more and more people have “something” in their life story.
Maybe those are the people I gravitate to.
Maybe they are drawn to me (or the “vacuous people need not talk to me” sign I have on my back scares others away).
It’s not that I don’t like talking about shoes or The Bachelorette or movies. I do– a lot. And I actually do think they matter. It’s important to have a break from the heavy, serious stuff. Some people think that the small stuff is all there is– that it matters. Those people are hard for me to take.
One day, shortly after I was diagnosed, I sat watching my son take a tennis lesson. I was still numb and reeling from the news that I had cancer. I hadn’t started chemo, and was still awaiting surgery. I knew what I was facing: double mastectomy and chemo. But to the outside world I looked totally normal; no one would know what news I had received.
There were two moms sitting near me chatting loudly while their kids had their lesson. These were the days before the recession, when women in my town were flush with cash, and living high on the hog. They were talking about vacations. “I just can’t decide where we should go for vacations this year,” one said, “John has so many vacation days it’s going to be hard to use them all. We could go to Switzerland again. But that’s kind of boring. And there’s the Caribbean. But I kind of want to do something different. What do you think?” she said to her friend.
I know what I thought. I thought someone needed to hogtie me to the chair before I punched her out. That was a problem? It was one of the few times I really wanted to say “Lady, let me tell you about a problem.” But I didn’t.
Why?
Because maybe her mammogram was the next day.
Maybe she was a day from being told there was something suspicious on it.
Maybe she was a week away from having a biopsy.
Maybe she was a month from having a double mastectomy.
Maybe she was six weeks from starting chemo.
Maybe she was just about to learn the lessons I was learning.
May 3rd, 2011 §
There isn’t one right way to react to loss. And the thing about grief? It’ll sneak up on you precisely when you’re not looking.
This morning I attended a memorial service for a 38 year-old mother of two. She died of complications from leukemia, leaving a loving husband and two children behind. We were connected by a shared friend and a diagnosis of cancer.
When Kellie was diagnosed fifteen months ago and learned she needed to have chemotherapy I offered her my scarves. I had an extensive collection from my months spent without hair and had been serially loaning them out to friends after my hair grew back. After they’d covered my head, they’d gone to a friend’s sister in Colorado who had breast cancer. Then they went to a friend down the street who also had breast cancer. The fourth head they touched was Kellie’s.
During that time I had to deny others the use of the collection. I know too many women who’ve had cancer, I thought. There isn’t a break in between their tours of duty. The scarves don’t rest, they just keep traveling.
Perhaps some might find it icky to wear a scarf of someone else’s. That never seemed an issue for my friends. In fact, their softness from being washed so often was a bonus; heads are sensitive when hair comes out and the softer the cotton is, the better.
Kellie had those scarves for a long time. Her own fiery red hair was long gone; my scarves were a poor substitute for that ginger hair of hers. I like the thought of her having something comforting and cheery to cover her head during some of those difficult days though.
After the service today the guests stood talking over coffee and tea and far too many sandwiches and baked goods. Unprompted, our mutual friend assured me the scarves were safe and would be returned soon. I know when the stack comes back I’ll touch the scarves longingly, wishing Kellie were delivering them herself.
I’m overwhelmed today with emotions… sadness at the second Mother’s Day without my beloved mother-in-law, anger at cancer for claiming another young mother, frustration that oncology is often an art more than a science, worry that it will happen to me.
I just need to think. I just need to cry. I just need to remember. I just need to live.
May 1st, 2011 §
In the weeks before my surgery, I looked at pictures of double mastectomy patients on the Internet. I Googled “bilateral mastectomy images before and after” thinking I was doing research. I thought I was preparing myself for what was coming.
In reality I was trying to scare myself. I wanted to see if I could handle the worst; if I could, I would be ready. My reaction to those images would be my litmus test.
Some of the pictures were horrific. I sat transfixed. I looked. I sobbed. I saw scarred, bizarre, transformed bodies and couldn’t believe that was going to be my body.
Days later, when I met my surgeon for my pre-op appointment he said, “From now on, don’t look at pictures on the Internet. If you want to see before and after pictures, ask me– look at ones in my office. You can’t look at random pictures and think that’s necessarily what you are going to look like.”
All I could do was duck my head in an admission of guilt. How did he know what I’d done? I realized how he knew: other women must do this. Other women must have made this mistake.
The aftermath is terrible to me though not in the ways I’d anticipated. I have no sensation in most of my chest. I never will.
A major erogenous zone has been completely taken away from me. Yes, I have new nipples constructed, but they have no feeling in them; they are completely cosmetic. The entire reconstruction looks great but I can’t feel any of it. It does help me psychologically beyond measure to have had these procedures though.
Here I sit, two gel-filled silicone shells inside my body simulating the biologically feminine body parts I should have. And sometimes that thought is disturbing.
To be clear: I don’t regret having them put in. I’ve never regretted that. It was a decision I made, and made deliberately. I knew that reconstructing my breasts was the right decision for me. I’m getting used to them– I’m almost there.
I definitely don’t remember what my breasts looked like before. I only remember these.
I once asked my plastic surgeon to see my “before” pictures a year or two after my reconstruction was over. You know what? My “before” breasts didn’t look so great. In my mind they did.
In my mind, everything about my life before cancer was better.
But that’s not the truth.
My mind distorts the memory of my body before cancer. Then forgets it.
My mind distorts the memory of my life before cancer. Then forgets it.
With time, I can get used to a new self.
It’s like catching my reflection in the mirror: only lately do I recognize the person staring back at me.
For over a year the new hair threw me. It’s darker than I remember it being before it fell out. It’s shorter than it was before, too.
And the look in my eyes? That’s different also.
I just don’t recognize myself some days.
Sounds like a cliché if you haven’t lived it.
But it’s true.
April 15, 2009
April 28th, 2011 §
I almost stole it: the tape measure with the purple finger prints.
After all, my surgeon had left it in my room by accident. After he had marked me with his purple pen and left my room on his way to get ready for my surgery, he left it sitting on the counter by the sink. In my nervousness and tranquilized haze I didn’t see it until after he’d left. I figured I shouldn’t hold onto it as I was wheeled in (“Who knows what germs lurk in tape measures!” I thought), and that if I gave it to a nurse it might get misplaced. So I shoved it in my bag of personal belongings knowing I’d be in for an office visit shortly after surgery.
I actually forgot about it during the days I was home after my two-day hospital stay. The drugs, the pain, the shock of my breasts gone and numb chest filled with temporary tissue expanders were all I could think about.
I forgot all about it as I was shuttled around for weeks unable to drive. I wasn’t living my normal life, my normal routine. I wasn’t carrying my purse and keys daily. I was living in pajamas and constantly trying to adjust to a new body once the drains were removed.
Then while I was looking for my keys a few weeks after my operation I saw it: the tape measure.
The yellow fabric one with the purple fingerprints up and down its sides.
The one.
The one that had measured and determined where my body was to be cut.
It was there in my bag.
There wasn’t anything particularly special about its practicality; it was just a tape measure.
Just like the ones I have sitting around with all of the odds and ends that inhabit kitchen drawers.
But that doesn’t capture the social meaning of it.
It wasn’t just any tape measure. It was mine.
But it wasn’t just mine, I argued with myself—it wasn’t a personal momento for me.
For a moment or two I wanted it.
I needed it,
as if to remind myself what had been,
of what I had been.
It wasn’t mine, I thought– it was his.
But more than that, it was theirs; it was ours… the other women who had needed it.
Now I was one of them. It was a shared history we had: strangers who had endured the same surgery, whose faces and names I would not know.
We were bound together by this object which had literally touched all of us.
And then I realized it was my responsibility to give it back.
Not for the obvious reason that it didn’t belong to me.
But as usual, I thought of the other women: the ones who didn’t even know they had cancer,
the ones who were going about their normal lives that day, and in the days ahead, only days or weeks or months from learning the life-altering news that would change their lives.
I felt giving back the tape measure would be my way of being bound to them, of saying “I know what you have ahead of you. I’ve come from there, and we are in it together.”
And so when I went to one of my office visits, I took it out of my bag and casually handed it to my surgeon. “You forgot this in my room when I had my surgery,” I said. He thanked me and said “I wondered where it had gone to.”
Little did he know the journey it had taken.
April 24th, 2011 §
I have a friend — a good friend. We’ve known each other for a long time. When I was going through chemotherapy for breast cancer, however, she wasn’t my most sympathetic friend. One of her typical reactions when I would talk about the bottomless fear of cancer recurrence that was swallowing me up was, “Well, I guess you’ll just have to get used to it.”
This was not really stellar support in my book; I think she could have done better. In my mind, because a close family member of hers had cancer in her past, she was not a stranger to its emotional component. Perhaps if no one in her life had ever had cancer I might have been more forgiving. Her relative was doing well, still in remission many years after her initial diagnosis. I mentally wrestled with myself: was I being too hard on a friend? After all, my emotions were on a rollercoaster. Things that didn’t bother me one day would infuriate me the next. Was I actually trying to let her off the hook for not emotionally supporting me? Was I excusing bad behavior? If those who have no experience with cancer shy away from those who are ill and those who have experience do so as well (if the memories are too painful to think about) then who is left to support you when needed? I couldn’t decide if I was expecting too much; maybe I was setting my friend up for failure.
Many times on the phone with her during my months on chemo as she proceeded to rant about the problems in her life and the ways in which things were not going her way, I wanted to point out to her how my life was “doing me wrong” in a bigger way.
Looking back, I wanted to trump her woe.
Lately, she has been having some medical issues of her own. Nothing permanent or relatively serious, but annoying and painful. For the last few weeks she has had some pain that is “excruciating.” She’s abroad this week, on vacation with her family. The pain, I guess, was not enough to keep her from that. While she has complained about her pain, her appointments, her problems for the last few weeks, I’ve really been holding back. I’ve really had to fight the part of me that wants to once again lash out.
“I guess you will just have to deal with it,” I want to say just like she did to me.
“I guess it’s not bad enough you can’t take your European vacation,” I want to say in a childish retort.
I want to trump her pain.
I want to wave the cancer card. Cancer trumps her issue, chemo trumps the discomfort she’s got.
Four years ago I found it almost intolerable that she should complain to me about the small things that were bugging her… the traffic on the way to school dropoff and how “inconvenient” her child’s schedules were. The way she had to take her child to the doctor twice in one week to check out an ear infection. How repairmen were keeping her waiting.
These things get sympathy from me under normal circumstances; these are things that bug me in my own daily life.
But not then.
While I kept silent then,
put it behind me then,
this latest round of friendship injustice just makes that time raw once more.
It brings that anger back.
My fear is that every time my friend has a hard time from now on, I am going to again have that feeling that she let me down when I needed her. I thought I had moved past it, but I guess not.
I don’t want it to get in the way of our friendship.
Maybe someone who wasn’t there for me then can’t really be a friend now.
Maybe some lessons can’t be learned until you go through them for yourself.
Maybe she can’t know how her responses hurt me unless she experiences it for herself someday.
The thing is: I don’t wish it on her.
People have different strengths.
We shouldn’t expect a person to be good at everything–
To fulfill all of our needs, all the time.
Extraordinary times call for extraordinary measures.
Maybe that’s true of forgiveness too.
April 13th, 2011 §
It seems like you can’t rank anguish. You shouldn’t be able to “out-suffer” someone. How do you quantify misery?
And yet, somehow we do.
“My problems are nowhere near as bad as yours.”
“I feel terrible complaining to you about it when you are going through so much yourself.”
I hear these types of comments all the time.
I make these types of comments all the time.
Placing ourselves in a hierarchy of pain and suffering serves to ground us; no matter how bad our situation is, there’s comfort in knowing there’s always someone who has it worse. Like being on a really, really long line at the movies or at the check-in at the airport, as long as there is someone behind you, it somehow seems better.
Hospitals use a pain rating scale: “On a scale of 1 to 10, how bad is your pain?” I was very intrigued when my son Colin was in the hospital for a week with a ruptured appendix and they asked him to rate his pain. At the time he was 5 years old and didn’t understand what they wanted him to do. He didn’t understand the concept of comparing one level of pain to another: it hurt… that’s all he knew. He used a binary scale to assess his pain: did it hurt or not? But as adults we know better: pain is not a yes-or-no question. Rather, there can be levels, ranking, quantification, and comparisons.
These mental exercises are necessary to keep us going through hard times, no matter what type. Before I got cancer, cancer was a “go-to” negative reference point. I mean, how many times have you thought “I’ve got health problems, but at least it’s not cancer”?
I did that. A benign lump needs to come out? At least it’s not cancer. A mole needs to be removed? At least it’s not cancer. My son has a cyst in his spinal column? At least it’s not cancer.
Then one day it was cancer.
So what could I pacify myself with?
At least it’s not terminal.
At least they can remove the body parts it’s in.
At least I have tools to fight it.
Then there was the big one: at least it’s happening to me and not my child.
I have a few friends with children who have had different types of cancer. These men and women (and their children, of course) are tough and have my utmost respect. I have thought many times, “That is harder. At least that’s not me. I don’t know what I would do.” When my son Tristan was diagnosed with deformities in his neck I thought “at least it’s something physical. At least it’s not something wrong with his brain. At least it’s not something that is fatal.” It’s cold comfort though. It’s still pain. It’s still grief. It is still hard.
I have often said I hate becoming anyone’s negative reference point. “At least I’m not her” someone might think of me. I always thought that meant they pitied me. I didn’t want that. But now I realize that it is okay for people to be glad they haven’t walked in my shoes– in reality, that’s what I want. I don’t want anyone to be where I have been; I’d like to be the lightning rod that keeps others I know safe. But, if it gives comfort to anyone to know that at least for today, their problems are not as big as mine, I think that’s good.
Because actually, at least for today, I’m doing just fine. I had laughs, and warmth, and hugs, and a day without pain—and I know that there are many people out there who can’t say the same.
Today I’m not the last one on line.
March 18th, 2011 §
What if I hadn’t gone to the gynecologist on time for my 6 month post-partum visit?
What if, during the breast exam, when my left breast felt “different” (no lump, no real reason, just “different”) my doctor had dismissed it as post-nursing irregularity and told me to come back in 6 months for another exam?
What if, when I called to schedule the mammogram (only 18 months after a clear one) and they said it would be a few months for an appointment I had said, “Okay”?
What if I hadn’t called my doctor to tell her that’s how long it would take and ask if that was acceptable?
What if she’d said “yes”?
What if I hadn’t opted for a double mastectomy?
What if I hadn’t gone for a second opinion on chemotherapy? What if I hadn’t gotten a second pathologist to review my slides?
What if that didn’t happen and I didn’t find out with that second look that I actually had invasive ductal carcinoma in one breast, in my lymph node, and dysplastic cells in the other breast?
What if I had decided not to do those things? Where would I be now?
What if I hadn’t been assertive, perceptive, inquisitive, impatient, and willing to do what it took to get answers?
I probably wouldn’t be alive. Or if I were, I’d be spending my time treating an advanced cancer.
Not blowing bubbles with Tristan today,
Not praising Colin for his schoolwork,
Not planning Paige’s sleepover for tomorrow.
I wouldn’t be able to enjoy the things I enjoyed today.
But I am here.
I was able to be with my family.
I was able to help others.
I am able to look to the future with hope.
And for that, I am happy.
March 16th, 2011 §
Perhaps the most common question I get asked by email is, “Someone I know has been diagnosed with cancer. What can I do?” Today I offer one suggestion. I believe this would make a wonderful gift for someone who has just been diagnosed and is a necessity if you are the patient.
Being organized is one of the best ways to help yourself once you’ve been diagnosed. When you first hear the words, “You have cancer” your head starts to swim. Everything gets foggy, you have to keep convincing yourself it’s true.
But almost immediately decisions need to be made — decisions about doctors, treatments, and surgeries. Often these choices must be made under time constraints. You may be seeing many different doctors for consultations. Medical oncologists, surgical oncologists, radiation oncologists, recontructive surgeons, internists— there are many different voices that you may hear, and they may be conflicting. It’s hard to keep it all straight in the midst of the emotional news. Not only are you likely to be scared, but also you are suddenly thrust into a world with a whole new vocabulary. By the time you are done with it, you will feel you have mastered a second language.
You can help your care and treatment by being organized. Especially if you are juggling different specialists and different medical facilities, you must remember that the common factor in all of this is you. It’s your health. It’s your life. I believe it’s important to travel with a binder of information about your medical history and treatment, as well as notes and questions.
This binder will mean that all of your information about your cancer will be in one place. This will be your resource guide. I cannot tell you how many times physicians have asked about my binder and said when I was able to produce test results, pathology reports, or other information they needed, “I wish every patient had one of those.”
I suggest the following:
A heavy 3-ring binder
I think a 1.5″ binder is a good size to start. This size will allow you to easily access reports and pages and have room for the calendar. It will look big at first but you won’t believe how quickly you will fill it up.
Colored tab dividers
I like these to be erasable. I think 8 is the minimum number you will need. If you have a lot of specialists you will need more. The categories you think you will need at the outset may change. It’s easy to erase and reorganize them. Put the categories you will be accessing the most in the front so you aren’t always having to flip to the back. Once the binder is full it will make a difference.
Some starting categories:
- schedules (dates of appointments you have had, when the next ones are due, and how often you need certain tests done)
- test results/pathology (it’s very important to keep copies of MRI, CT, and pathology reports so that you correctly tell other doctors what your diagnosis is. For example, new patients often confuse “grade” with “stage” of cancer.)
- insurance (keep copies of all correspondence, denial of claims, appeal letters, explanations of benefits)
- articles and research (handouts, post-surgical information. Ask if there are any websites your doctor does approve of. My own oncologist said, “Do not read anything about cancer on the internet unless it comes from a source I’ve told you is okay. There’s a lot of misinformation out there.”) Keep your post-surgical instructions, any info given to you about aftercare.
- radiation/chemo (keep records of exactly what you had done, number of sessions, dates, drug names, etc. I also asked how my dose was calculated so I knew exactly how much of each drug I received in total)
- medications (drug names, dates you took them, dosage, side effects). I also keep a list of all of my current medications as a “note” in my iPhone. That way I can just copy it down and won’t forget anything on the list. You should always include any vitamins or supplements you take.
- medical history (write out your own medical history and keep it handy so that when you fill out forms asking for the information you won’t forget anything. As part of it, include any relatives that had cancer. Write out what type it was, how old they were at death, and their cause of death. Also in this section include genetic test results, if relevant)
Loose leaf paper
Perfect for note-taking at appointments, jotting down questions you have for each doctor. You can file them in the approporiate category so when you arrive at a doctor your questions are all in one place.
Business card pages
These are one of my best ideas. At every doctor’s office, ask for a business card. Keep a card from every doctor you visit even if you ultimately decide not to return to them. If you have had any consultation or bloodwork there, you should have a card. That way, you will always have contact information when filling out forms at each doctor’s office. For hospitals, get cards from the radiology department and medical records department so if you need to contact them you will have it. Also, you want contact information for all pathology departments that have seen slides from any biopsy you have had. You may need to contact them to have your slides sent out for a second opinion.
This is also a good place to keep your appointment reminder cards.
CD holders
At CT, MRI or other imaging tests, ask them to burn a CD for your records. Hospitals are used to making copies for patients these days and often don’t charge for it. Keep one copy for yourself of each test that you do not give away. If you need a copy to bring to a physician, get an extra made, don’t give yours up. If you need to get it from medical records from the hospital, do that. You want to know you always have a copy of these images.
Keep a copy of most recent bloodwork (especially during chemo), operative notes from your surgeries (you usually have to ask for these), pathology reports, and radiology reports of interpretations of any test (MRI, CT, mammogram, etc.) you may have had. Pathology reports are vital.
Calendar
I suggest a 3-hole calendar to keep in your binder. This will serve not only to keep all of your appointments in one place but also allow you to put reminders of when you need to have follow-up visits. Sometimes doctor’s offices do not have their schedules set 3, 6, or 12 months in advance. You can put a reminder notice to yourself in the appropriate month to call ahead to check/schedule the appointment.
Similarly you can document when you had certain tests (mammograms, bone density, bloodwork) so you will have the date available. I usually keep a piece of lined paper in the “scheduling” section of my binder that lists by month and year every test/appointment that is due and also every test I’ve had and when I had it.
Sticky note tabs
These can be used to easily identify important papers that you will refer to often, including diagnosis and pathology. These stick on the side of the page and can be removed easily. As your binder fills up, they can be very helpful to identify your most recent bloodwork, for example.
Plastic folder sleeves
These are clear plastic sleeves that you access from the top. They can be useful for storing prescriptions or small notes that your doctor may give you. The sleeves make them easy to see/find and you won’t lose the small slips of paper. Also a good place to store any lab orders that might be given to you ahead of time.
The above suggestions are a good working start to being organized during your cancer treatment. If you want to do something for a friend who is newly diagnosed, go out and buy the supplies, organize the binder and give it to your friend. He or she will most likely appreciate being given a ready-made tool to use in the difficult days ahead.
I also believe a modified version is equally useful for diagnoses other than cancer. When our youngest son was born with defects in his spine and hands it took many specialists and lots of tests to get a correct diagnosis. Having all of his tests and papers in a binder like this was instrumental in keeping his care coordinated. In fact, at his first surgery at The Children’s Hospital of Pennsylvania they gave us a binder to assist in this process. I know some hospitals do this for newly diagnosed patients already. Maybe my tips will help you or a friend know how to better use the one you already have. You may not need all of these elements depending on the complexity of your case, but I hope you will find some of these suggestions useful.
March 9th, 2011 §
Just because you know someone who died from cancer doesn’t mean I will.
Just because you know someone who:
felt sick,
felt great,
felt tired,
felt strong,
looked great,
looked awful,
lost her hair,
kept her hair,
ate healthy,
ate crap,
took vitamins,
ignored medical advice,
got acupuncture,
believed in holistic medicine,
ate no soy,
ate no sugar,
never laughed,
never cried,
had surgery,
had radiation,
received chemotherapy,
got silicone implants,
got saline implants,
had a great attitude,
had a terrible attitude…
Just because you know someone who did
one of these things,
many of these things,
some of these things…
doesn’t mean it will work for me.
It doesn’t mean it will kill me.
It doesn’t mean it will make me live.
Just because it worked for someone else doesn’t mean it will work for me.
It doesn’t mean it won’t.
Or can’t.
It might.
It might not.
Just because you know someone who died from cancer doesn’t mean I will.
January 18th, 2011 §
July 18, 2009
I went by my friend’s house today– the one who was just diagnosed with breast cancer. I wanted to put something in her mailbox. When I opened the mailbox it was full of mail already. She hadn’t taken in yesterday’s mail yet.
Of course she hadn’t. Why should she worry about mail when they are worrying about cancer and what it means for their family?
I left the bag in her mailbox on top of the day-old mail and went away, remembering:
Remembering that time in my life two years ago when I was diagnosed with cancer.
I managed to get the kids where they needed to go (I have no idea where that was).
I did the things I needed to do (I have no memory of what they were).
I went the places I needed to go (I can’t remember where they were).
There is no room for anything else in these days, these days in the beginning.
There is no room for anything else except to hear the words again and again,
as if you need to convince yourself that they are true: “You have cancer.”
There is no room to
do anything,
think anything,
say anything,
be anything,
fear anything,
hope anything,
dream anything,
live anything,
love anything,
breathe anything.
In these days there is no room for anything but cancer.
But these days will pass.
You don’t believe it.
Can’t believe it.
But it’s true:
these days will pass.
Your life will change.
You can make room for other things,
better things.
And once again,
there will be room in your mailbox.
You will remember to get the mail because you won’t be thinking about cancer.
You’ll be thinking about the things you should be thinking about,
that you deserve to be thinking about.
Each day.
Every day.
Today
January 16th, 2011 §
A previous discussion about inspiration and setting an example provoked my friend Laura to write to me, “If something ever happens to me where I have to dig deep to find that strength that you have found (and shown), I will think of you. Often. And re-read your blog. Often.”
This was the highest compliment and I appreciated those words immensely. Her words got me thinking.
So many of my friends have mothers who’ve had cancer. In college, my two closest friends, Alex and Deb, both had mothers who had breast cancer. Somewhere in that experience was an expectation for them that someday, inevitably, they would have it too.
It was many years before my own mother did. And then right on her heels, so did I. Before Alex and Deb did. And so, like my mother was for me (see “Everyone Needs a Trailbreaker”), I suddenly became the trailbreaker for my best friends.
I’ve gone through some cancer scares with friends and acquaintances over the past three years. I’ve sat in waiting rooms, taken phone calls, written emails, met with women in person. I’ve helped friends, strangers, and friends of friends.
When I was young someone teasingly called me a walking encyclopedia. Somehow it still seems true. My husband only half-jokingly shakes his head when he hears some of the questions people ask me. He sometimes says, “They do know you’re not a doctor, right?”
I know that I’m the first of my friends to have breast cancer. And have it “bad.” The whole nine yards. That experience comes with responsibility. I know that having cancer at 37 means that I will be that resource, that friend, that support system.
In the future, others will need me. Friends will ask me how to help, what to do, what things mean.
There is a lot of pressure coming my way and I think about it already: what if I let them down?
That’s the kind of person I am.
I am already worried not only about getting through my own experience; I’m worried how I can help my friends if their time comes.
And statistically it will.
I’m worried who will be next.
I’m angry someone will be next.
I want to be the lightning rod.
I want to take in on for them.
I want to protect them.
Laura, I want to protect you:
I don’t want you to have to read my blog for strength.
I want you to read it because you want a window into a world you never have experienced. And never will.
That is my greatest hope, my greatest dream.
If I could sleep, that would be my dream:
To keep you all safe.
January 14th, 2011 §
I wish I had the energy of my youth.
I wish I had the body.
I wish I had the fearlessness, the spunk, the drive.
I wish I could have a conversation with that young girl,
bright-eyed and full of wonder.
I wish I could tell her what lay ahead.
I wish I could tell her to gather strength, and wisdom, and patience like a squirrel gathering acorns for the winter.
“Save those things up,” I’d say, “you are going to need them… every last bit.”
I wish I could share the perspective I’ve gained along with all of the love.
But I can’t go back to that time,
I can’t go back to that place.
I can’t rewrite what’s happened,
I can’t do it all again.
I guess I must have done something right along the way for when it came time to fight I did,
and I did it well.
But that struggle took its toll on me and I am quite sure I will never, ever be the same.
You tell yourself “they’re only breasts.”
You say, “I don’t need ovaries, I’m done having children.”
But that obscures the truth.
The truth is that it does matter,
they do matter.
They say my uterus is atrophied.
It almost sounds funny when you say it.
“Who cares? What does that matter?”
It does. It does. It does.
To get rid of all hormones gives me a better chance at avoiding a recurrence, but there is a price to be paid.
No estrogen matters more than I ever thought it could.
It feels worse than taking injections to suppress my ovaries, worse than taking Tamoxifen. Those were easy. I had no clue what was ahead.
I wear the skirt, I put the makeup on, I walk the walk.
But I do not feel like a woman anymore.
I’m proud of what this body has done for me:
3 beautiful children,
surviving cancer,
healing the broken bones, the infections, the autoimmune diseases.
There is no week without migraines,
no cold winter day without icy implants.
Beneath the pretty lies ugly,
the ugly truth of cancer
and what it has taken from me.
While some may be able to go on,
move on,
forget,
I cannot.
My body will not let me.
These things are not tied with a pink ribbon.
These things last longer than a month.
This is part of awareness.
This is part of what breast cancer can do.
This is what it has done to me.
January 13th, 2011 §
There are ways in which I will never make you as readers understand what it’s like to have cancer if you haven’t. However, part of the reason I write this blog is to try to explain some of the cancer patient “mentality” (if you’ll accept such a generalization) to those of you who haven’t had cancer. To that end, you can hopefully be better friends, partners, spouses, sons, and daughters. There are things I didn’t know before I had cancer that I wish I had understood.
It’s not that I am special. It’s not that I am so smart. It’s that I have been there. Hopefully sooner than you have. And so I am reporting back from the field. To try to help you. Prepare you. Because if there is one thing I know, one thing I know for sure: you will know someone. It might be your friend. Your parent. Your child. Or even yourself. Maybe you already know someone. But one thing is for sure: you will know someone who gets cancer. And you know what? You already know me.
One of the ways your life changes when you have had cancer is that you begin to understand the phrase “It’s never over” in a whole new way.
As soon as you hear the three words, “You have cancer” your life changes. From the time you hear those words everything is different. You now have a history of cancer — even if it’s a cancer that can be removed and you don’t need any other treatment. It is now a history that puts you at risk. Now every medical problem, every medical history you give, every question mark, every medical mystery must be filtered through the lens of a history of cancer.
A woman I know from college was writing a brief note to me by email to thank me for something nice I’d done. The last part said, “Hope you’re feeling on top of the world (or close to it).”
My reaction? First I burst out in laughter.
Ah, the naiveté of the healthy!
On top of the world! Ha!
Then it actually got me riled up.
Angry.
How dare she think it was over.
Then I got angry at myself for lashing out.
I became contrite.
Why should she know better?
How could she know better?
It isn’t fair to expect people to know better.
Only once you know better can you do better.
If she only knew.
What was I going to do?
Write back and explain to her the error in her thinking?
Should I write back and say:
I counted every day, every hour, every minute, every second to be “done.” But when each thing was “done” there was always something else I was counting toward. Always something else looming. I’m never “done.” It’s never “done.” It’s never “over.”
The language we use reveals a lot.
When someone says,
“You must be on top of the world,”
that means:
“You should be”
“You ought to be”
or
“I expect you to be.”
For someone like me, if I don’t feel like that it’s hard.
I get angry. I want to say all of the reasons why that’s not realistic– why that’s wrong. Why that’s precisely what I’m not feeling.
But then, when my anger cools, I take that and turn it inward. And all I feel is disappointment. Disappointment in myself. Maybe I should feel like that. Maybe I really should feel on top of the world. The fact that I don’t means I’m not as far through this thing as I thought. It reminds me I’ve still got a lot of work to do.
Maybe the battle is not really with cancer. Maybe it’s with myself.
But I think the point remains: just surviving cancer isn’t necessarily enough. It’s not enough to make you feel on top of the world.
You can help those who have had cancer by not making the leap that just because they have lived through this round that they have “won”; don’t assume that they will necessarily be ecstatic, “done,” and ready to move on.
Rather than telling people what they “must” feel, we all can be better friends and listeners by asking questions rather than making statements.
Rather than saying “you must feel on top of the world” think of the difference it would have made if my friend had said, “Now that your treatment and surgeries are over, how do you feel?”
An open-ended question is always a safe conversation starter. I’m going to try it more often in my everyday life; I hope you will too. My wish is that it begins some good conversations between you and someone you care about.
January 12th, 2011 §
That chair you’re sitting in?
I’ve sat in it too:
In waiting rooms. Chemo rooms. Prep rooms. For tests. Surgeries. Procedures. Inpatient. Outpatient. Emergency visits. Routine visits. Urgent visits. To see generalists. Specialists. Surgeons. Alone. With friends. With family members. As a new patient. Established patient. Good news. Bad news. I’ve left with new scars. Prescriptions. Appointments. Words of wisdom. Theories. Guesses. Opinions. Statistics. Charts. Plans. Tests. Words of assurance. More bloodwork. Nothing new. Nothing gained. Nothing but a bill.
That feeling you’re having?
I’ve had it too:
Shock. Disbelief. Denial. Grief. Anger. Frustration. Numbness. Sadness. Resignation. Confusion. Consternation. Curiosity. Determination. Dread. Anxiety. Guilt. Regret. Loss. Pain. Emptiness. Embarrassment. Shame. Loneliness.
That day you’re dreading?
I’ve dreaded it too:
The first time you speak the words, “I have cancer.” The first time you hear “Mommy has cancer.” The day you wear a pink shirt instead of a white shirt. Anniversary day. Chemo day. Surgery day. Scan day. Decision day. Baldness day. The day the options run out.
Those reactions you’re getting?
I’ve had them too:
Stares. Questions. Pity. Blank looks. Insensitivity. Jaw-dropping comments.
Those side effects you dread?
I’ve dreaded them too:
Nausea. Vomiting. Pain. Broken bones. Weakened heart. Baldness. Hair loss. Everywhere. Unrelenting runny nose. Fatigue. Depression. Hot flashes. Insomnia. Night sweats. Migraines. Loss of appetite. Loss of libido. Loss of breasts. Phantom pain. Infection. Fluid accumulation. Bone pain. Neuropathy. Numbness. Joint pain. Taste changes. Weight gain. Weight loss. Some of them happen. Some don’t. Eventually, though? You name it. It changes. Temporarily anyway.
That embarrassment you’re feeling?
I’ve felt it too:
Buying a swimsuit. Getting a tight-fitting shirt stuck on my body in the dressing room. Having a child say “You don’t have any eyebrows, do you?” Wearing a scarf. Day after day. Wondering about wearing a wig because it’s windy outside and it might not stay on.
That fear you’re suppressing?
I’ve squelched it too:
Will this kill me? How bad is chemo going to be? How am I going to manage 3 kids and get through it? Will my cancer come back and take me away from my life? Will it make the quality of life I have left so bad I won’t want to be here anymore? Is this pain in my back a recurrence? Do I need to call a doctor? If it comes back would I do any more chemo or is this as much fight as I’ve got in me? What is worse: the disease or the treatment?
That day you’re yearning for?
I’ve celebrated it too:
“Your counts are good” day. “Your x-ray is clear” day. “Now you can go longer between appointments” day. “See you in a year”day. First-sign-of-hair day. First-day-without-covering-your-head day. First taste of food day. First Monday chemo-isn’t-in-the-calendar day. Expanders-out, implants-in day. First walk-without-being-tired day. First game-of-catch-with-the-kids day. First day out for lunch with friends day. First haircut day. “Hey, I went a whole day without thinking about cancer” day. “Someone asked me how I’m doing, I said ‘fine’ and I meant it” day.
That hope you have?
I have it too:
No more cancer.
Don’t you think that would be amazing?
I think so too.
January 10, 2010
January 11th, 2011 §
June 18, 2010
There. I did it.
This picture shows me one month after I finished chemo. Peach fuzz growing. Eyebrows gone. Eyelashes gone. Both pencilled in to hide their absence.
This is the only picture I have of myself bald. When I was a shiny cue ball it never occurred to me to document it. If you look closely at my left eye, you’ll see a tear resting on my lower lid. I had just stopped crying. Long enough to put on makeup and flash that killer smile. I was just about to get my tissue expanders out and have my silicone implants put in. It was right before my 38th birthday. That’s what I told my plastic surgeon I wanted for my birthday– to be done with that next phase of my reconstruction.
It was hard to go in for that particular surgery at that particular time in my treatment regimen. When the staff came to wheel me in I had to remove my scarf. My surgeon hadn’t seen me bald. The nurses, my father, my doctor… all of them saw my head then. Of course it was run of the mill for them. They saw cancer patients all the time. But for me it was another way my dignity, my identity, my humanity were being stripped from me. I donned the fabric shower cap gladly, happy to have something (albeit flimsy) to conceal my naked head.
Only moments before, I stood in the bathroom with my plastic surgeon while he marked my body once more with his ubiquitous purple Sharpie pen. We talked again about final details of my breasts. I realized how these conversations had become so routine between us. While the subject of my breasts was no longer one that even caused a pause in chatter for us, I didn’t want him to see my head. Somehow it was more personal, more private, more embarrassing to me than the fact that he not only saw, but touched, drew on, and even photographed my breasts on a regular basis during reconstruction. Those interactions were scripted. Defined. But my head? I hadn’t realized he was going to see that. And there was embarrassment there. It wasn’t happening on my terms.
So today I am taking control and doing it on my terms. When Melissa Etheridge performed bald at the Grammys in 2005 (before I was even diagnosed) I remember thinking, “She is strong. She is real. She is brave. She is beautiful.” What she did in that moment was important. I bet it was liberating to her. So I’m going to try it. It’s too late for me to try it in reality (and I don’t want to pull a Britney Spears and shave my new hair off to be bald again).
Today is the 2 year anniversary of the day I finished chemo. So, in celebration, I’m taking off my metaphorical scarf. I’m going bald here today. I want to see how it feels.
January 10th, 2011 §
January 30, 2009
I had two surgeons that day:
one just wasn’t enough for the job.
The surgical oncologist would take away,
the reconstructive surgeon would begin to put back.
Before I headed off into my slumber,
I stood as one marked me with purple marker.
He drew,
he checked,
he measured.
And then a laugh,
always a laugh to break the tension:
Surgeons must initial the body part to be removed to ensure
they remove the correct one.
But what if you are removing both?
How silly to sign twice,
we agreed.
And yet he did,
initialing my breasts with his unwelcome autograph.
The edges of the yellow fabric measuring tape he used
had purple fingerprints up and down their sides;
use after use had changed their hue.
And now it was my turn to go under the knife–
a few more purple prints on the tape.
I got marked many a time by him that year.
Endless rounds of
purple dots,
dashes,
and lines
punctuating my body
with their strange, secret blueprint
only those wearing blue understood.
We stood in front of mirrors
making decisions in tandem
as to how my body should and would take new shape.
Two years today and counting.
Moving forward.
Sometimes crawling,
sometimes marching,
and sometimes just stopping to rest
and take note of my location.
Numb inside and out,
but determined.
Grateful,
hopeful,
often melancholy.
Here comes another year
to put more distance
between
it and me.
Let’s go.
January 6th, 2011 §
Some days I say to myself, “Enough with cancer.”
Some days I say, “That’s enough. No more.”
No more thinking about it.
No more doing.
No more helping.
No more advocating.
No more educating.
No more communicating.
But then I say, “There’s still so much to do.”
There’s still so much to say.
There’s still so much to hope for.
There are still so many who suffer.
And so I am pulled back in,
Writing, talking, sharing.
Some days I want to talk about anything but cancer.
But I remember this is the new me,
This is my new life.
This is who I am.
And as long as there are others who come after me,
I will do what I can…
to hear,
to help,
to hope.
December 30th, 2010 §
One of my favorite romantic movie moments occurs between Denys (Robert Redford) and Karen (Meryl Streep) in the movie Out of Africa. The two lovers are out in the African desert at a fireside camp. Karen leans her head back into Denys’s hands. He washes her hair gently, then cradles her head in one hand and pours water from a pitcher, slowly and gently rinsing the soap from her hair after he’s done washing it. It’s a tender moment, to me utterly soft and sensual.
Before I left the hospital after I had a double mastectomy, the staff told me I might not be able to lift my arms over my head. With both sides affected, they said, I’d likely be unable to wash my own hair.
Recovery is slow in the week after surgery. A clear thin tube (like aquarium tubing) is literally sewn into a small hole in the skin under each arm. It carries excess fluid away from the mastectomy site as it heals. Fluid is collected into a small “bulb” and measured every few hours. After certain medical criteria are met, the drains are removed, the incisions sewn up, and then you can finally take that longed-for shower. Eight days after the surgery I received the all-clear. As any mastectomy patient will tell you, the day you get your drain(s) out is a great day.
Only then did I try to lift my arms. And hurt it did. I tried to shrink down into my body. I tried to be a tortoise withdrawing my head back inside my shell, shortening my height so I wouldn’t have to lift my hands so high to reach my hair. It was a painful challenge. I worked up a sweat trying to get my fingers to touch my scalp. I knew it was a questionable proposition. But I thought I could do it.
I thought about that scene— that romantic tender scene from Out of Africa. And I started laughing. I laughed and I laughed and tears came down my face. That cry hurt. It was one of those “I’m laughing and I’m crying and I’m not sure if it’s funny or sad or both and I don’t want to think about it so I’ll just go with it and I hope I’m not on Candid Camera right now…”
I was laughing at the absurdity of it. Here I was. It was my chance to get Clarke to wash my hair. My big fantasy moment. I was going to be Meryl Streep and he was going to be Robert Redford and he was going to wash my hair. Except I couldn’t move without pain. And I certainly wasn’t feeling romantic. I had just had my breasts removed. And I had these weird temporary breasts (tissue expanders) in their place. And my chest was numb. And my underarms hurt from having tubes in them for a week.
Because I hadn’t properly showered I still had purple Sharpie hieroglyphics all over my chest. And I had no nipples. And I had big scars and stitches in place of each breast. And a small angry scar with stitches under each armpit where the drain had just been removed. Let me tell you… this was clearly not how I envisioned beckoning my loving husband to come make my little movie scene a reality.
Now, don’t get me wrong. Had I called him from the other room, he would have done it in a second. He would have been there for me, washed my hair, and not made me feel the bizarre, odiferous (!) freak I felt at that moment. And I would have loved him for it. But I did not want him to see me like that.
In that moment I had a dilemma. What kind of woman was I going to be?
What kind of person was I going to be with this disease from that moment going forward?
I was going to push myself. Do it myself.
I wasn’t going to be taken care of if I could help it. I knew I was going to have trouble asking for help, have trouble accepting help. I knew these things were going to be necessary. But I also knew they were going to cause me problems. That’s the kind of person I am.
I knew asking for and accepting help were actually going to make me feel weaker than I was already feeling. And it was only the beginning. I knew these actions were going to make me feel weaker than I knew I was going to get. I wanted to do everything myself for as long as I could. That was what was going to make me feel alive: doing it myself.
I am not sure I did the best job washing my hair. I probably missed a spot or two. But I did it. And I didn’t ask for help.
Granted, it was something small.
But in that particular moment, on that particular day, that particular act gave me a feeling of pride as big as anything else I could have possibly accomplished.
a postscript: I wish I had been more accepting of help in the early days. I wish I had not seen it as a personal “weakness” the way that I express here. I don’t want to change what I wrote then, but I do want to say that I don’t think I was right to push myself so hard. If I had it to do over again I would accept help more often; maybe not for the hair-washing, but definitely for other tasks that I should have outsourced. I have learned from my experience.
December 24th, 2010 §
Originally written December 25, 2008
(three weeks after my salpingo-oophorectomy and two years after my diagnosis of breast cancer. This was actually the first blogpost I ever wrote.)
I’ve only cried once today. That’s not too bad. But the day is not yet done. Today, again, I’m thinking of the things that cancer has taken from me. First, let me say that I am well aware of the blessings I have. I remember them each and every minute of every day. They are what keeps me going, keeps me fighting. But today, again, I’m pulled into what’s gone, what’s irretrievable, what’s changed.
The body parts are gone, of course. My feeling of immortality. Of safety, of security. I’m vulnerable now. And I feel it. Part of me wants to blaze down I-95 at 100 miles an hour because I’ve stared down cancer, so what can touch me now? Taking risks is a popular grief reaction. On the other hand, a part of me wants to curl up in bed and not come out.
Today, on Christmas, when the childlike wonder is all around, I feel like I am watching it from high above me, as it happens TO ME, around me. I smile, I do what I am supposed to do, I play the “Santa game” with my children. I eat delicious food. I gather up the gift wrap strewn about the living room. I pile the presents in the kids’ rooms. I pack their suitcases for their 3:30 a.m. wakeup for their winter vacation. Half my family is leaving me tomorrow. They’ll be back, of course, but they are leaving. And while they are gone I will ponder the sadness that has settled like a cloud since my latest surgery almost a month ago.
I know I’ll be fine… everyone tells me so, as if to will it to be that way. Even in my darkest moments I know it is only temporary. But I am angry at cancer. Angry at the bad twist of fate that makes me unable to travel this year, unable to be myself, unable to shake this feeling that the dark cloud just seems to keep following me, like those creepy paintings in the museum whose eyes seem to follow your every move.
And knowing the other people who are similarly sad today, those who are remembering loved ones lost, and those who are suffering in pain, and those who will head in for more chemo and surgery and therapies before the year is out are also forever changed by the great equalizer of cancer.
To anyone who reads this and thinks it sounds so odd, so foreign– something that happens to “someone else”… I am so happy for you. I am jealous of you. I remember that feeling, but I am almost getting to the point where I am unable to remember it. I never thought it would be me thinking this way, feeling this way. But it is me. And it’s taking a long time to grieve for that life I thought I would have.
Maybe that’s what it is.
I’m in mourning.
I’m mourning the life I thought I would have.
And only time can help that.
December 20th, 2010 §
Four is just a word. So is three. But once again today I will change one word on the welcome page of my website.
“It has been three years since hearing the words ‘You have cancer,’” the first sentence says.
And now, today, it becomes four.
I think about days like the one four years ago — days that start innocently, normally, benignly. In the hours leading up to the mammogram I wasn’t worried about anything.
I think about the sentence that changed my life.
I think of where I’ve been, where I am, where I am going.
I think of those I’ve met along the way: new friends, doctors, nurses, strangers.
I think of those who have died from cancer and other causes since I was diagnosed.
I think of the progress we’ve made and the distance we have yet to go.
I think of what today might bring, and tomorrow.
And then, in a sudden reversal, I stop myself from thinking too much.
“It’s time to go live my life,” I tell myself. Thinking is good, but only so much.
“It’s time to go live my life,” I tell myself…
Right after I change that one word.
To read about the chronology of my diagnosis, go here.
December 17th, 2010 §
originally published September 12, 2009
My friend Andrea found out she needs to have chemo. I cried a lot the day I found that out. Last night she emailed me that she was thinking about the whole “losing her hair” thing. She has gorgeous hair. Thick. Straight. Reddish-brown, in the sun I’d say it has a honey shine in it. She usually wears it back in a ponytail, as she says, “taking it for granted.”
I started writing her back to tell her that focusing on her hair wasn’t silly. There are many things about cancer that are real worries. One of them is going bald. Especially for a woman. And as I typed to her I realized the words were flowing fast and furious.
I realized all the things people had said to me when I was worried about losing my hair and all of the things people had said to me after it eventually happened.
Everyone wants to reassure you that it isn’t as bad as you think it is.
Some days you convince yourself it isn’t that bad.
Some days you are sure they are all lying to you.
Either way, you get through the days.
The day you take that hat or wig or scarf off and wear your newly-grown stubble or “mouse fur” out in public is a great day (My first hair was so fine and soft and thin that it didn’t resemble hair at all… I called it mouse fur because while it blissfully covered my head and was dark, it couldn’t be cut or styled).
So, for my friend, and for other women who are getting ready to start chemo (and those who bravely walk through the world every day without hair because of alopecia and other conditions), no matter what, it matters.
No matter what anyone says…
all the things they will say:
It’s only hair.
It’ll grow back.
You’ll look so pretty anyway.
With a face like yours it won’t matter.
We’ll get you a cute wig.
We’ll get great scarves.
It’ll grow back in no time.
Maybe it’ll be better after it grows in.
It might be curly.
It might be straight.
I know someone whose hair came in gray.
I know someone whose hair came in red.
I know someone whose hair came in black.
I know someone whose hair came in white.
Hers came in curly.
Hers came in straight.
Did you see hers?
It looks great.
Did you see hers?
It looks awful.
I like her better with short hair.
I liked her better with long hair.
You’re gonna look great.
I don’t know what I’d do.
I don’t know how you do it.
I don’t know how you’re gonna do it.
You are so brave.
You are so strong.
You can do it.
You can beat this.
No matter what anyone says–
It is just going to suck.
Bigtime.
You may shed many tears over this one.
It may be harder than you thought.
I’ve heard brave women say it was harder than the actual chemo.
Reports show women actually turn down the chemotherapy they need because they don’t want to go bald.
It’s real.
It’s hard.
If it weren’t,
Women wouldn’t cover their heads.
They would just walk around bald.
They wouldn’t care.
But hair matters.
To us,
To our kids,
To our husbands,
To our friends.
My hair has never been the same since chemo.
I’m not alone in that.
In fact,
My hair now grows “the other way”…
My part is on the opposite side of my head than it used to be.
I think that’s kind of neat.
There’s the way my hair was B.C. (before cancer)
And the way it is now.
It is a big deal.
Don’t let anyone minimize it.
If they do, make them go shave their heads.
Not just clipper cut.
Straight razor shave it until there’s nothing left.
Then the eyebrows.
Then the eyelashes.
And then the stuff they might not think about.
Every piece of body hair.
Of course there are jokes.
And giggles.
The Brazilian wax done for you.
It’s funny.
But not so funny.
Then when your nose hairs fall out you suddenly realize how
Much you needed them.
Your nose runs constantly.
And it’s embarrassing.
Mine dripped clear liquid constantly.
I was so embarrassed.
No one had told me about that part.
I had a tissue stuffed in every pocket.
Because there were no hairs to stop the drip.
Chemo drip.
You try to imagine what it will be like.
You try to picture what you will look like bald.
You pull your hair back,
Slick it back,
Try a wig on to see what it might look like.
But nothing can prepare you.
For that crappy day,
Two weeks in.
When you scratch an itch
Or touch your head
And take away a handful of hair
Or find it on your pillow.
And the sight of it is so sad,
But so disgusting
So repulsive,
That you need it gone.
And then if you need me
You will call me.
And I will come.
And I will cut it.
Or maybe I will just come and cry with you.
And remember what it felt like.
No matter what anyone says,
It isn’t nothing.
It is something.
And even in the scheme of all of the things to be afraid of with cancer,
How you feel about losing your hair is real.
It matters.
And I remember.
December 7th, 2010 §
I didn’t know Elizabeth Edwards. In fact, I wrote a piece critical of her when she initially stood by John after his affair. I was disappointed when she gave an interview on CNN in May of 2009 and spoke only of John’s “imperfection” rather than calling him the cheater he was and kicking him to the curb. I was angry she hadn’t used her interview time to talk about herself, her cancer, her life: the topics I wanted to hear about. I was angry at her for not claiming her remaining years of life as her own.
So why am I sitting with tears in my eyes because she has died?
I cry because it makes me feel vulnerable and scared of what this disease can do to me: what it did to her.
Yes, I know… there are plenty of men and women who get cancer, have treatment, and stay in remission for the rest of their lives. And, in essence, isn’t that what every cancer patient hopes for, as Betty Rollins wrote, “to die of something else”?
I don’t think it makes me pessimistic, depressing, or negative to think that I am vulnerable.
It’s the truth. It’s my truth.
Anyone who hasn’t been to the oncologist with me to see my risk-of-recurrence charts, my mortality charts, my decision-making discussions along the way can’t say to me “Oh, don’t worry, that won’t be you.” No one, including me, knows how it will go.
People tell me: stay strong, just think positive, you can’t generalize from her situation.
I respond: I am strong, I hope for the best. I don’t think positive thinking is going to save me if there are remaining cancer cells still in me.
I hope that people won’t say to someone who has been diagnosed with cancer, “Don’t worry, what happened to Elizabeth Edwards won’t happen to you.” Because while we do everything we can to ensure we die of something else, it just isn’t always the case. In 2006 her oncologist told her that there were many things going on in her life, “but cancer was not one of them.” Things change quickly, cancer can recur when you least expect it.
I have sympathy for her family. I cry for her children. I am saddened about the years she spent with a man who didn’t deserve her. I am angry about the time she wasted on him. I hoped she would be an example of someone who would keep cancer at bay.
I grieve for that hope, now gone.
December 2nd, 2010 §
In August, the editors at Cancer Bone Health asked me to write a blogpost for their launch. Today it went up on their new website.
click here to read it:
Standing straight: Words of welcome from a survivor
The profile piece they wrote about me and posted a few days ago appears here.
November 23rd, 2010 §
Originally published June 24, 2010
There comes a point in your life when you realize that your parents are people too. Not just chaffeurs, laundresses, baseball-catchers, etc.– but people. And when that happens, it is a lightbulb moment, a moment in which a parent’s humanity, flaws, and individuality come into focus.
If you are lucky, like I am, you get a window into that world via an adult relationship with your parents. In this domain you start to learn more about them; you see them through the eyes of their friends, their employer, their spouse, and their other children.
Yesterday I sat transfixed reading Katherine Rosman’s book If You Knew Suzy: A Mother, A Daughter, A Reporter’s Notebook cover to cover. The book arrived at noon and at 11:00 last night I shut the back cover and went to sleep. But by the middle of the night I was up again, thinking about it.
I had read an excerpt of the book in a magazine and had already been following Katie on Twitter. I knew this was going to be a powerful book for me, and I was right. Katie is a columnist for The Wall Street Journal and went on a mission to learn about her mother after her mother died (on today’s very date in 2005) from lung cancer. In an attempt to construct a completed puzzle of who her mother was, Katie travels around the country to talk with those who knew her mother: a golf caddy, some of her Pilates students, her doctors, and even people who interacted with Suzy via Ebay when she started buying up decorative glass after her diagnosis.
Katie learns a lot about her mother; she is able to round out the picture of who her mother was as a friend, an inspiration, a wife, a mother, a strong and humorous woman with an intense, fighting spirit. These revelations sit amidst the narrative of Katie’s experience watching her mother going through treatment in both Arizona and New York, ultimately dying at home one night while Katie and some family members are asleep in another room.
I teared up many times during my afternoon getting to know not only Suzy, but also Katie and her sister Lizzie. There were so many parts of the book that affected me. The main themes that really had the mental gears going were those of fear, regret, control, and wonder.
I fear that what happened to Suzy will happen to me:
my cancer will return.
I will have to leave the ones I love.
I will go “unknown.”
My children and my spouse will have to care for me.
My needs will impinge on their worlds.
The day-to-day caretaking will overshadow my life, and who I was.
I will die before I have done all that I want to do, see all that I want to see.
As I read the book I realized the tribute Katie has created to her mother. As a mother of three children myself, I am so sad that Suzy did not live to see this accomplishment (of course, it was Suzy’s death that spurred the project, so it is an inherent Catch-22). Suzy loved to brag about Katie’s accomplishments; I can only imagine if she could have walked around her daily life bragging that her daughter had written a book about her… and a loving one at that.
Rosman has not been without critics as she went on this fact-finding mission in true reporter-style. One dinner party guest she talked with said, ” … you really have no way of knowing what, if anything, any of your discoveries signify.” True: I wondered as others have, where Suzy’s dearest friends were… but where is the mystery in that? To me, Rosman’s book is “significant” (in the words of the guest) because it shows how it is often those with whom we are only tangentially connected, those with whom we may have a unidimensional relationship (a golf caddy, an Ebay seller, a Pilates student) may be the ones we confide in the most. For example, while Katie was researching, she found that her mother had talked with relative strangers about her fear of dying, but rarely (if ever) had extended conversations about the topic with her own children.
It’s precisely the fact that some people find it easier to tell the stranger next to them on the airplane things that they conceal from their own family that makes Katie’s story so accessible. What do her discoveries signify? For me it was less about the details Katie learned about her mother. For me, the story of her mother’s death, the process of dying, the resilient spirit that refuses to give in, the ways in which our health care system and doctors think about and react to patients’ physical and emotional needs– all of these are significant. The things left unsaid as a woman dies of cancer, the people she leaves behind who mourn her loss, the way one person can affect the lives of others in a unique way… these are things that are “significant.”
I woke up in the middle of the night thinking about the book. My head spun with all of the emotions it raised in me. I think that part of the reason writing has become so important to me is precisely because I do realize that we can die at any moment. And if you don’t have an author in the family who might undertake an enormous project as Katie did, where will that explanation of who you were — what you thought — come from?
Is my writing an extension of my desire to control things when cancer has taken away so much of this ability?
Is part of the reason I write an attempt to document my thoughts, my perspective for after I am gone… am I, in a smaller way, trying to do for myself what Katie did for her mother?
If I don’t do it, who will do it for me?
And in my odd way of thinking, am I trying to save anyone the considerable effort of having to work to figure out who I was– deep down?
My blog has the title “You’d Never Know”: I am telling you things about myself, my worldview, and my life, that you would otherwise have no knowledge of. One of the things people say to me all the time is, “You’d never know to look at you that you had cancer.” After hearing this comment repeatedly I realized that much of our lives are like that:
If we don’t tell someone — share our feelings and experiences — are our lives the proverbial trees falling (unheard) in the forest?
What if you die without being truly understood?
Would that be a life wasted?
If you don’t say things for yourself can you count on others to express them for you?
Further, can anyone really know anyone else in her entirety?
After a loved one dies, there always seems to be at least one mystery person: an individual contacts the family by email, phone, or in person to say, “I knew your loved one: this is how I knew her, this is what I remember about her, and this is what she meant to me.” I know that this happened when Barbara (my beloved mother-in-law) died suddenly last fall. There are stories to be told, memories to be shared. The living gain knowledge about their loved one. Most often, I think families find these insights comforting and informative.
Katie did the work: she’s made a tribute to her mother that will endure not only in its documentation of the person her mother was (and she was quite a character!) but also in sharing her with all of us. Even after her death, Suzy has the lovely ability to inspire, to entertain, to be present.
I could talk more about the book, Katie’s wonderful writing, and cancer, but I would rather you read it for yourself. I’m still processing it all, making sense of this disease and how it affects families, and being sad that Katie’s children didn’t get to know their grandmother. Katie did have the joy of telling her mother she was pregnant with her first child, but Suzy did not live long enough to see her grandson born. In a heartwarming gesture, Katie names her son Ariel, derived from Suzy’s Hebrew name Ariella Chaya.
I thank Katie for sharing her mother with me, with us. As a writer I learned a lot from reading this book. I’ve said many times recently that “we don’t need another memoir.” I was wrong. That’s like saying, “I don’t need to meet anyone new. I don’t need another friend.” Truth is, there are many special people. Katie and Suzy Rosman are two of them.
November 21st, 2010 §
One of the most destructive emotions in my life is regret. Thankfully, I don’t have many decisions in my life that I would change if I had the chance. But there is one big medical one that I question daily: my decision to have my ovaries removed 18 months ago to put me into menopause and remove/significantly decrease some major hormones from being produced in my body.
In consultation with my oncologist, after chemotherapy was over I decided to take ovarian suppression injections. My period had come back within a few months of chemo ending even though I was in my late 30s. I was not going to have any more children. The tamoxifen I was taking had already started giving me ovarian cysts and I needed numerous ultrasounds to monitor them. Ovarian cancer was always in the back of my mind.
After one year of the injections (in which a thick needle is plunged under the skin of your belly and a small pellet of medication is placed which dissolves slowly over the course of one month) I decided I wasn’t going back; I couldn’t tolerate the questions every month with a menstrual cycle and hormone fluctuations. With my kind of breast cancer (estrogen and progesterone receptor positive), any remaning cancer cells in my body would be “fueled” by these hormones. I wanted to minimize them, and hopefully reduce my chance of cancer recurrence.
And so, after the year of injections I consulted with some surgeons. They felt that the ovary removal (oophorectomy) would be no harder on my body than the injections I’d already been taking. I had laparoscopic surgery in December of 2008 and felt good about the aggressive stance I was taking.
Then my world caved in. Within weeks of the surgery I was depressed. My hormones were bottoming out. Not just the estrogen and progesterone, but other ones the ovaries produce. I was plunged into menopause and all of its agony overnight. My hormone levels went not to the point of a menopausal woman (there are still some hormones present) but as my oncologist told me “of a prepubescent girl.”
I was depressed. I cried constantly. I was still getting over the surgery itself (not exactly the “walk in the park” that had been described to me) and had to miss the family Christmas vacation that year. Clarke and the 2 older kids went to Wyoming while I stayed with Tristan and tried to heal and regroup.
The joint pains started, the bone loss continued, the depression loomed. I had to watch my cholesterol numbers and must take osteoporosis medication after breaking ribs in a fall. I have sexual side effects that can’t be remedied with estrogen creams or pills. In the future I worry about the increased risks of dementia, heart disease and lung cancer without the protective benefits of estrogen.
But worse than any of them, the migraines began. I’d never had them before, but the overnight hormone drop brought them on fast and furious. Up to 15 a month.
It really is “always something.” Each decision is not isolated; everything I do to my body has ramifications and risks. I don’t know if I would have made the same decision if I knew what pain I was bringing on myself. All I know is that fear is a motivator. At the time all I could think about was the cancer. I felt that anything I could do to decrease the chance of my cancer recurring was worth it.
Some days I’m not so sure about that. I believe the doctors I consulted vastly underestimated the effect that this surgery can have. Perhaps as more women electively remove their ovaries if they test positive for the BRCA-1 and 2 genes we will learn more about the effect it has on our bodies (I have tested negative for both of those genes but it is a main reason women opt to have oophorectomies).
There’s no way to know if I made the right decision.
If my cancer stays in remission I will feel better about my decision. But as side effects mount and long-term health issues occur throughout my life because of this surgery and its repercussions, I can’t help but question if my fear may have pushed me too far.
November 21st, 2010 §
Sometimes I think this quality manifests itself in perceived negativity. Every so often, Clarke accuses me of focusing on the negative. I can’t say I think he’s wrong, I just think he’s wrong about what drives the concern.
It’s not that I focus on the negative. I just want to be prepared for whatever I am about to confront—good or bad. Of course, being prepared for bad things is harder. But I’m not even sure that I’m ready for good things to come my way.
Here it is in a nutshell: I have a terrible fear of being unprepared.
I never entered “suitcase parties.” These type of lotteries were popular in college. A business would purchase 2 round trip tickets and donate them to a sorority (or other organization) as part of a fund-raiser. You packed a suitcase and went to the drawing. If they chose your name, you and a guest would leave directly from the party to go to the airport.
The twist was, you had no idea where you would be going. You packed your suitcase and showed up without knowledge of whether you were headed to the Caribbean or Vermont. It could be anything, so you had to pack accordingly.
Sound fun? Not to me. Not appealing—at all. I never entered any of them.
I was always like this. But it really changed in December of 2006. The one time I wasn’t worried I got bitten on the ass. When I went back for my second mammogram I wasn’t concerned– in the least. There was no lump, I had just had a clear mammogram 18 months earlier, I was 37 years old, and I had had multiple benign lumps removed throughout my life. Every time I had needed a lump removed, I had worked myself into a tizzy of fear. And each time I had been proven wrong: the lumps were benign.
So to have vague density issues in one breast a few months after I stopped nursing my third child did not provoke worry in me at all.
So when they kept taking pictures I wasn’t worried. When they did the ultrasound I wasn’t worried. When the technician called in the radiologist to look at the ultrasound images I wasn’t worried. When they took me into a separate “discussion room” I still wasn’t worried.
But then the radiologist said words that scared me… hearing words I wasn’t prepared for was devastating.
It’s as if the words she said weren’t in my vocabulary. And therefore, when I heard what she was telling me… it’s probably cancer… I had no reflex in place to catch me while I fell. Here I was, unprepared in every way to digest the news.
So from then on I was fixated on preparing for what lay ahead. I didn’t want to be unprepared for the biopsy, for the double mastectomy, for the chemo. I walked through the world in a blur for that month while decisions were made. My body shut down and I was anxiety-laden. I knew I needed to get a plan. In getting a plan I would feel more powerful, more in control. And I did. Once my decisions were made about surgery and adjuvant therapy (chemo and long term hormone therapies), I think I became resigned. I needed to know what to expect. I needed to know what I might be able to do to take care of my family and how to carry on during what would likely be one of the toughest physical and emotional challenges of my life.
When my hair started to come out in clumps on the morning of my second round of chemo I went to the garage with my clippers and shaved my head. I needed to take control.
“What ifs” are my lifeblood. What if my cancer comes back? What if I die from this? What if I have such a poor quality of life that it’s not worth it anymore? What if I made a mistake being as aggressive as I have been?
The passage of time is helping me with these questions. I know you can’t control it all. And I don’t have the energy to worry all the time. But I also know that in being prepared I am self-soothing, rubbing my mental worry beads, trying to reassure myself that things will be okay.
I’m not sure I believe that yet. It’s a daily struggle. But I learned my lesson by dropping my guard. As a student of life, I failed once. I won’t do it again. Control what I can, be prepared for what I can’t. That’s as far as I am right now.
November 21st, 2010 §
Many of my friends are going through it. You know, it. The anomie that occurs for stay-at-home parents when their children become more independent and they are left at home wondering where that part of themselves, independent of spouses and children, went. “What do I do next?” they ask themselves. “Where do I go from here?” Often in limbo, not having enough time to get a full-time job or needing the flexibility for school vacations and afterschool hours, stay-at-home parents struggle to re-enter society with their (often) outdated skills, wardrobes, and knowledge base (the words to Wiggles songs do not count as expert knowledge).
I’m being spared this aimlessness because of my cancer diagnosis three years ago. My youngest child is 4, he’ll start kindergarten next fall. He has some physical issues, abnormalities in his hands and neck which mean I’ll need to spend more time dealing with the school system about his special needs. He’ll need physical and occupational therapies for the foreseeable future, but he’ll be in regular school from 8:30 to 3:00 every day.
Now that I am in remission my weeks are still full with doctors, managing side effects, and helping others going through the diagnosis and treatment process. But more often than not I’m at the computer writing. I’ve carved out something that gives my life meaning apart from my family. And while my cancer history has involved all those who know and love me, I still think of it as mine. My cancer. Why? Because as much as someone with cancer can try to explain what it is, what it feels like– what the cancer experience is– I am not sure we ever can fully succeed. Like trying to explain the love you have for a child to someone about to have their own child, you just don’t get it until it happens to you.
And so, the cancer is mine. And that possession is providing my step to the next phase of my life. I don’t wonder what I’m going to do with my time… I just wonder if I will have enough time to write all I want to write– if I can express for some who cannot express for themselves what this cancer experience can be.
November 8th, 2010 §
One of the phrases I heard often during the emotional events of the past few years is “Things happen for a reason.” The other night while Clarke and I were watching a reality show one of the contestants spoke the same phrase as she predicted elimination from the show.
“I think everything happens for a reason,” she said.
“No they don’t!” I reflexively argued with the screen.
“Why does that make you so upset?” Clarke asked.
“Because it’s just a way that this woman is rationalizing why this bad thing– elimination from a contest she’s competing in– is okay. She’s trying to tell herself that things really aren’t as bad as they are. She’s trying to console herself that there is a purpose in her suffering… that it will lead to something bigger and better, and that is just not necessarily the case!” I said.
I don’t think things happen for a reason and I find it unsettling when people want to tell me that cancer, or my mother-in-law’s death, or anything that has been a challenge has happened as part of some grand plan for something better.
I just don’t believe it. And I don’t want you to believe it about my life, either.
I think things just happen — and when they do, you have to decide how you are going to handle them. Those actions, those responses, can teach you lessons, but they are lessons you teach yourself. You can grow, get stronger, do something that you otherwise never would have. Alternatively, you might learn that you made a mistake and should deal with a situation differently the next time it comes up.
My attitude?
Don’t give away the credit.
Don’t minimize the hurt or disappointment.
Don’t rationalize why it isn’t as a big a deal as it is.
There isn’t necessarily a purpose in suffering; it’s not part of a causal narrative that “passing the test” will get you to the next step. You make your own tests, you find your own lessons. But using the word reason implies that it was given to you, designed for you.
And I just don’t believe that.
February 19th, 2010 §
I took my friend Brenda out to lunch for her birthday today. While we were sharing an appetizer, a group of four people entered the restaurant: three men dressed in business attire accompanied a woman with a knit cap on. I realized in an instant she was bald underneath that covering and postulated that the hat would not be coming off.
They took off their coats and sat down at the table. I watched them for a while, from a distance, across the restaurant. The hat did not come off. She was bald, most certainly, and likely undergoing chemotherapy. My mind started to wander, and I started to wonder. Was she at a business lunch and able to keep working during this crisis? Was she done with treatment and waiting for her hair to grow back in or was she on an “off week” of chemo when food might be somewhat appealing?
I kept looking at her hat. It was freezing cold out today, so it wasn’t particularly out of place. But I kept staring at it. It looked handknit. Had someone she knew made it for her? Had she gotten it from the basket at the cancer center where people knit and donate hats for cancer patients?
I wonder what she’ll do with the hat when her hair grows back in: will she throw it away? Burn it? Give it to someone else who needs it? After wearing those head coverings day after day, you don’t want to lay eyes on them again. After my hair grew back, I saved my scarves for a friend’s sister who was set to start chemo shortly after I finished. I recently saw pictures of her wearing them. It’s odd to see them, associated with so many memories for me, on her head too. Now I have the scarves back, and some have already been lent to another member of the club.
My wig, worn twice, is packed away in the basement. I will soon donate it to a charity that provides wigs to women who can’t afford them. I hate that wig. I hate what it looks like. I hate how it feels. I hate how I looked in it. Twice I wore it, and I had to keep from tearing it off every second it was on my head. It wasn’t me; I felt like someone else in it. But I just can’t get rid of it yet. It’s like a trophy for walking through the fire.
I wonder if that woman I saw at lunch today feels like that. She and her group finished their meals and left before I did. I was really sorry I didn’t get to tell her that her hat looked great on her.
January 14th, 2010 §
I wish I had the energy of my youth.
I wish I had the body.
I wish I had the fearlessness, the spunk, the drive.
I wish I could have a conversation with that young girl,
bright-eyed and full of wonder.
I wish I could tell her what lay ahead.
I wish I could tell her to gather strength, and wisdom, and patience like a squirrel gathering acorns for the winter.
“Save those things up,” I’d say, “you are going to need them… every last bit.”
I wish I could share the perspective I’ve gained along with all of the love.
But I can’t go back to that time,
I can’t go back to that place.
I can’t rewrite what’s happened,
I can’t do it all again.
I guess I must have done something right along the way for when it came time to fight I did,
and I did it well.
But that struggle took its toll on me and I am quite sure I will never, ever be the same.
You tell yourself “they’re only breasts.”
You say, “I don’t need ovaries, I’m done having children.”
But that obscures the truth.
The truth is that it does matter,
they do matter.
They say my uterus is atrophied.
It almost sounds funny when you say it.
“Who cares? What does that matter?”
It does. It does. It does.
To get rid of all hormones gives me a better chance at avoiding a recurrence, but there is a price to be paid.
No estrogen matters more than I ever thought it could.
It feels worse than taking injections to suppress my ovaries, worse than taking Tamoxifen. Those were easy. I had no clue what was ahead.
I wear the skirt, I put the makeup on, I walk the walk.
But I do not feel like a woman anymore.
I’m proud of what this body has done for me:
3 beautiful children,
surviving cancer,
healing the broken bones, the infections, the autoimmune diseases.
But there is no sex without pain,
no desire to even try,
no week without migraines,
no cold winter day without icy implants.
Beneath the pretty lies ugly,
the ugly truth of cancer
and what it has taken from me.
While some may be able to go on,
move on,
forget,
I cannot.
My body will not let me.
These things are not tied with a pink ribbon.
These things last longer than a month.
This is part of awareness.
This is part of what breast cancer can do.
This is what it has done to me.
April 27th, 2009 §
That chair you’re sitting in?
I’ve sat in it too.
In waiting rooms. Chemo rooms. Prep rooms. For tests. Surgeries. Procedures. Inpatient. Outpatient. Emergency visits. Routine visits. Urgent visits. To see generalists. Specialists. Surgeons. Alone. With friends. With family members. As a new patient. Established patient. Good news. Bad news. I’ve left with new scars. Prescriptions. Appointments. Words of wisdom. Theories. Guesses. Opinions. Statistics. Charts. Plans. Tests. Words of assurance. More bloodwork. Nothing new. Nothing gained. Nothing but a bill.
That feeling you’re having?
I’ve had it too.
Shock. Disbelief. Denial. Grief. Anger. Frustration. Numbness. Sadness. Resignation. Confusion. Consternation. Curiosity. Determination. Dread. Anxiety. Guilt. Regret. Loss. Pain. Emptiness. Embarrassment. Shame. Loneliness.
That day you’re dreading?
I’ve dreaded it too.
The first time you speak the words, “I have cancer.” The first time you hear “Mommy has cancer.” The day you wear a pink shirt instead of a white shirt. Anniversary day. Chemo day. Surgery day. Scan day. Decision day. Baldness day. The day the options run out.
Those reactions you’re getting?
I’ve had them too.
Stares. Questions. Pity. Blank looks. Insensitivity. Jaw-dropping comments.
Those side effects you dread?
I’ve dreaded them too.
Nausea. Vomiting. Pain. Broken bones. Weakened heart. Baldness. Hair loss. Everywhere. Unrelenting runny nose. Fatigue. Depression. Hot flashes. Insomnia. Night sweats. Migraines. Loss of appetite. Loss of libido. Loss of breasts. Phantom pain. Infection. Fluid accumulation. Bone pain. Neuropathy. Numbness. Joint pain. Taste changes. Weight gain. Weight loss. Some of them happen. Some don’t. Eventually, though? You name it. It changes. Temporarily anyway.
That embarrassment you’re feeling?
I’ve felt it too.
Buying a swimsuit. Getting a tight-fitting shirt stuck on my body in the dressing room. Having a child say “You don’t have any eyebrows, do you?” Wearing a scarf. Day after day. Wondering about wearing a wig because it’s windy outside and it might not stay on.
That fear you’re suppressing?
I’ve squelched it too.
Will this kill me? How bad is chemo going to be? How am I going to manage 3 kids and get through it? Will my cancer come back and take me away from my life? Will it make the quality of life I have left so bad I won’t want to be here anymore? Is this pain in my back a recurrence? Do I need to call a doctor? If it comes back would I do any more chemo or is this as much fight as I’ve got in me? What is worse: the disease or the treatment?
That day you’re yearning for?
I’ve celebrated it too.
“Your counts are good” day. “Your x-ray is clear” day. “Now you can go longer between appointments” day. “See you in a year”day. First-sign-of-hair day. First-day-without-covering-your-head day. First taste of food day. First Monday chemo-isn’t-in-the-calendar day. Expanders-out, implants-in day. First walk-without-being-tired day. First game-of-catch-with-the-kids day. First day out for lunch with friends day. First haircut day. “Hey, I went a whole day without thinking about cancer” day. “Someone asked me how I’m doing, I said ‘fine’ and I meant it” day.
That hope you have?
I have it too:
A cure.
Don’t you think that would be amazing?
I think so too.
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