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.
April 7th, 2011 §
I’m cranky, I’m sad, I’m frustrated.
I don’t want to explain how I feel to family members. I don’t want to have to.
I want to yell, “If you’d had cancer you would understand!” But I know their ignorance is my prize… the prize I get for the fact that some of the people I treasure most haven’t had cancer.
I’ve seen a comaraderie that comes with this disease.
We may have had different types of cancer, different treatments, different prognoses… but… we are tied together.
When I was diagnosed one of the first things I was struck by was how vulnerable I felt. I worried about my family, especially my (then) seven-month old son Tristan who had his own medical problems. “Who will fight for him?” I thought. “No one will love him the way I do. No one will be his advocate the way that I will. I have to do it. I have to be here for him. I have to do what it takes to stay alive.” That became my mantra.
But once introduced, the worry could not be abolished. It could be dampened, minimized, controlled. But it could not be removed.
Two days ago a high school classmate died of brain cancer. Today I got word that a woman I know is in intensive care after complications from leukemia.
I ache for their families, for their children. I can’t explain the nuances of these feelings well. I have been here at the keyboard trying to find the words and repeatedly come up short.
And so, perhaps it is enough to say that I don’t always have the right words to convey what it is I am feeling.
But that doesn’t mean I feel it any less.
April 4th, 2011 §
I have a friend who says that “cancer has been her gift.”
She says that it’s been the best thing that’s ever happened to her.
That perspective doesn’t suit me. Despite being optimistic and determined, I am a realist. I see the ugly warts.
I don’t think it’s the best thing that’s ever happened to me; in fact, I wouldn’t wish it on anyone.
A gift is something you want to share.
Something you want to give to someone else.
Something you say “Next time I need to give a special gift to show someone I care, this is what I want to give.”
Cancer is not that thing.
Language matters.
The words we use to describe illness, death, and emotion are important– we should choose them carefully.
Cancer is not a gift:
It’s what you get.
It’s what I got.
It’s a twist of fate.
A happenstance.
A piece of bad luck.
But once you’ve got it, you have to decide what you’re going to do with it.
You can’t give it away, so you might as well make the best of it.
Fortunately, some good comes with it too.
And one of the best parts is the people you will meet.
Just because you don’t think it’s the best thing,
or a good thing,
doesn’t mean you are a negative person
or a bad person
or any particular kind of person.
In fact, it may mean you are a realistic person.
It may mean you are having a bad day.
Or a good day.
Or just a day.
And you will have those days:
Good
Bad
High
Low
Carefree
Despondent
Manic
Depressed
Terrified
Numb
Grateful
Spiteful
Bewildering
Confused
Overwhelmed
Sleepwalking
Drained
Energized
Proud
Embarrassed
And everything in between.
The days are gifts.
You can celebrate the days.
You should celebrate the days.
But don’t celebrate the disease.
Don’t treat it like a prize.
You are the prize.
You are doing the work.
You get the credit.
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 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.
February 23rd, 2011 §
When you (or a family member) are diagnosed with cancer people say a lot of insensitive things. It may be intentional or it may be just because they are caught off-guard and don’t know what to say to you. They ask bizarre questions, and often do bizarre things.
Sometimes you laugh.
Sometimes you just shake your head.
Sometimes you get angry.
But rarely do you forget.
So, today’s question is: what are the weirdest/craziest/most bizarre/most insensitive things people said to you/did to you while you or a family member or friend were going through treatment for cancer? Or died from it?
I have a few notable ones, but I’ll start with just one to kick things off. Someone asked me, “Is cancer what’s going to kill you? I mean, could you die from something else?”
February 2nd, 2011 §
I remember distinctly sitting in movie theaters when I was pregnant. At various points throughout the film I’d tune out the words and images and get lost in my belly, feeling each of my children squirm and wriggle and stretch. “What if this is it?” I’d think to myself. “What if I go into labor right here, right now?” And then I’d think to myself, “In just a week or two I’ll be a mother, mother to a person whose body is inside mine but whose face I have not seen, whose voice I do not know, whose skin I have not touched. I’ll be mother to this person for his or her entire life, my life will be shaped by his, and his by mine.” And those thoughts seemed incomrehensible to me at the time. Too large, too vast.
Then four years ago my little mental interludes changed form. “I have cancer,” became the thought that was too big to wrap my brain around. “Right now, while I am sitting here the cells are there. There is cancer in me. Right now,” I thought to myself. Eventually, after my double mastectomy, during my reconstruction, I could sit, arms crossed across my chest and feel the tissue expanders in me. And even now, I need only take a sharp, deep breath to feel the implants in there, reminding me of what has come to be.
Sometimes, when there is a lull in a movie, I still “check out.” Just for a few moments.
As if when I am sitting there,
in the theater,
away from everyday distractions,
lost in someone else’s life,
only then can I think about the larger things that haunt me.
The other night I found myself momentarily thinking about my body, and its cells. “Are there any cancer cells left?” I thought. “What if there are some still there, right now, dividing, multiplying, gathering momentum.”
I sat and wondered if they’re gone. If they’re not. I wonder what the plot will be, how it will end. My favorite movie endings are the ones where you get to see what happened to the characters– how things ended for them, what the final chapter was– an epilogue. I realize I can’t have that knowledge about myself. And I’m not really sure I’d even want to. I guess everyone likes a happy ending. That’s the only kind I really wish I could know about myself.
January 27th, 2011 §
I love this piece in the New York Times about the myth that a fighting spirit and good attitude make all the difference in how (and if) you recover from a life-threatening condition. I wrote a piece in 2009 about this and am reposting here since the topic has received attention this week.
…………………………………
“Having a good attitude makes all the difference.”
People say that to me all the time. I am sure every person who’s had cancer hears that. I think what people are saying is that there is something you can control in all of this mess. There is so much you can’t control, that you have no choice in. People say how you deal with it, how you choose to behave once these things are thrown your way, is up to you.
Here’s what I think:
I think what matters is good health insurance. I think what matters are friends and social support to get you through. I think what matters are children, or pets, or others who nurture your soul and remind you why you are going through all of this: there are others who care about and depend on you.
I think good medicines matter. I think caring and capable oncologists matter. I think talented surgeons matter. I think getting good advice matters.
Why am I resistant to the idea that attitude matters? Not because I don’t believe it. I reject this idea because it places the burden of healing on the individual patient. It places the weight of getting better in his/her hands. I think cancer patients have enough to deal with. We have enough to feel guilty about and responsible for. I think tossing our collective attitude into the mix is a lot of pressure. All eyes are on us anyway.
Now we have to watch how we treat the thing which is killing us.
Having a good attitude says:
the power is in you to survive.
The power is in you to heal.
The power is in you to do well.
But looking at the converse is troubling. The implication is that if you suffer, if you relapse, if you die– it is your fault.
If you had only had the right attitude,
you could have been better at keeping it away.
You could have been stronger.
You could have beaten it.
That may be flawed logic in the philosophical sense but I think it’s worth exploring. Even if that logic can’t be reversed so easily, I think the implication is there: you should have the right attitude because it makes a difference. Difference in what? Difference in your outcome. If it didn’t, then they would not say it.
Or would they?
There is an impetus to control, as I’ve talked about frequently in my writing. You just feel like you need to do something. I think that’s what people are grasping on to with their advice. They know you can’t do much, so they tell you to control the one thing you can: your mindset about what is happening to you.
Sometimes I just don’t want to have a good attitude.
I don’t necessarily think it makes a difference.
I don’t want to think positive thoughts all day
and see the good in what is happening to me.
I think that can be healthy too.
January 27th, 2011 §
This post was written at a time when I was feeling down, fatigued, weary. I started thinking of all of the things that I was looking forward to when I felt better, things I hoped for the future, things I was thankful for along the way. These would be my payments; these were things that I accepted for my struggle.
……………………………………
A currency of thanks,
a commodity of gratitude,
a medium of memories.
Hugs
smiles
laughs
tickles
sunny days
warm laundry
long baths
newly-mown grass
freshly-baked cookies
hot coffee
baby snuggles
happy endings
clean floors
baby shampoo
good blood counts
clear scans
easy blood draws
short waiting room waits
no side effects
no hidden costs
generous co-pays
quiet offices
pain-free mornings
guiltless decisions
days without regrets
unconditional love
fading scars
new friends
caring surgeons
information
honesty
openness
truth
validation
appreciation
understanding
sympathy
hope
research
progress
empty parking spaces.
someday, my hope:
no more cancer.
January 21st, 2011 §
Beautiful.
It’s not a word I have used to describe my body. Ever.
Even when I was young and lithe and strong I didn’t think of myself that way.
After three pregnancies that word was certainly gone from my vocabulary.
I loved and appreciated my body for what it had done, what it could do. However, that feeling was more a result of recognizing its practicality more than its aesthetic appeal.
When I was diagnosed with cancer everything changed.
One aspect: body parts became liabilities.
It doesn’t matter, people said, you are the same person inside.
Was I? Am I?
Ripples replaced smooth expanses of skin.
Rosy scars replaced creamy white flesh.
I didn’t mind them then– I don’t mind them now.
Or do I?
When the glass is half full it is still also half empty.
I can see both views by shifting focus.
I’d rather be scarred than dead…
…but I’d rather have been healthy than ill.
I miss the hormones. My life is not the same since the removal of my ovaries shut down almost all of my estrogen production. One of my doctors told me the change would not be radical. She was wrong. There isn’t a day that goes by that this decision doesn’t affect my life.
When we’re in the thick of it we are afraid. We think fear is bad, but in fact the fear is useful: fear causes us to be brave.
Fear allows us to do things we never thought we would have the strength to do. Chemo was my greatest fear; I literally made myself ill with fear about receiving chemotherapy. I wanted any excuse not to do it. Saying no to chemotherapy would have been the wrong decision for me to make based on my particular risks. My fears of metastasis, dying young, and leaving my children was greater. I needed to do everything I could: that was my mindset. Whatever it takes.
I have reminders every day that I am not who I used to be.
And so, when I think of the words you are still the same person I realize it’s not true.
I’m not the same person… and I think that’s okay.
In fact, I’m not sure it could be any other way.
I ordered the book The Scar Project in October and finally received it two weeks ago. Photographer David Jay has been photographing breast cancer patients who were diagnosed between the ages of 18 and 35. The images are stark, real, true. The book has statements from the subjects, a bit about their cancer experience in their own words. I realized when I looked at them how beautiful the women were. That’s the word that instantly came to mind: beautiful.
With scars, without breasts, without hair… whatever each picture showed I found myself thinking how powerful those images and words were. And then I realized something: I am one of them. If they are beautiful so am I. It isn’t just their bodies, it’s their strength. Maybe my definition of beauty has changed; I just see it as meaning more than it used to.
Now that I am older I see that resilience is beauty. Scars can be inspiring. Scars are the marks we have to show that we have lived, endured, survived. I need to be willing to say that if those women are beautiful, so am I. Why I still have a hard time saying that, I don’t know.
Of course I am sure that is what David Jay wants to happen with his project; he wants to show that the reality of life with cancer is one that can be empowering. I do draw strength from my past, but the mixed emotions inside continue to wrestle with one another. David Jay has succeeded: he has shown strength in beauty and beauty in strength.
I need to do the same.
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 16th, 2011 §
I never want people to feel sorry for me– I don’t feel sorry for myself. I feel lucky. I live a great life now; I’ve had a great life so far. I’ve learned a lot along the way and gotten stronger and stretched myself in ways I could not have predicted.
Sometimes I wake up in the middle of the night panicked. The other night my worries about Tristan came to the surface. This week I have been working to get him additional physical and occupational therapy sessions from our town in preparation for kindergarten next year (if you don’t know about Tristan’s physical problems you can read about them here).
At 1:47 I lay in the dark wondering, “Who will care for this boy if something happened to me? What if I die — can anyone be his advocate the way I am?” I pondered that question for some time. I thought of the family in a documentary I watched two weeks ago called Monica and David. The film’s subjects have Down’s Syndrome and recently got married. They live in Florida with Monica’s parents in a condominium. Monica’s parents should be retired by now, enjoying their golden years. Instead, they have a full-time job caring for their adult daughter and her husband.
When I was watching the film I kept thinking about the same issue: who would help Monica and David if something catastrophic happened to Monica’s parents?
I realized that her parents have somehow come to terms with uncertainty, as we all must.
In graduate school my Ph.D. proposal dealt with management consultants and their claims of expertise. How did this group of professionals carve out a niche in the business market and claim that only they were qualified to objectively advise companies on what they should do to not only survive, but thrive? The certification of knowledge intrigued me. I never finished my dissertation, but many themes of study from years ago have stayed with me.
I never could have predicted that I’d be thinking about uncertainty in terms of cancer. I never could have known that those advising me on decisions would be oncologists and surgeons.
But just as Monica’s parents have learned to deal with that uncertainty, so must I.
Betty Rollin wrote that having cancer means being a little bit afraid at least some of the time. I know that’s true. But learning to manage uncertainty is a part of everyone’s life.
I think of individuals with obsessive-compulsive disorder that I talked about in a blogpost on the shows Hoarders and Obsessed. The specific type of therapy used in Obsessed (cognitive behavioral therapy) has been a great mental tool for me. Psychologists force affected individuals to “sit with their anxiety” until it reduces by half. In a nutshell, repeated exposures to the panic-inducing event prove to the patient that (the world will not end, they will not die, their loved one will not be harmed) if they do not give in to their compulsions.
The lesson? The body cannot exist in a heightened state of anxiety indefinitely. To cope, to survive, the level must (and therefore will) come down.
I take that insight and the examples I’ve seen and incorporate them into my life. I know that at each stage of my diagnosis and treatment for cancer I panicked. When we found out Tristan had physical problems I was terrified at the possible outcomes for what his disabilities could be (most of them thankfully not realized). But that seems to be a comfortable pattern for me: get new information, freak out for 24 hours, wake up and get to work learning, dealing, living. Taking our fears, whatever they may be, and learning how to better work through them can only help us… for uncertainty is a given.
October 27, 2010
January 16th, 2011 §
November 8, 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.
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 7th, 2011 §
I’ve referred to Judy Clement Wall’s blog a few times… on Fridays she does a wrap-up of things she’s read and seen and thought about during the week. This week she found a YouTube video clip on “11 Words for 2011” and gave her own. I have many serious topics to write about soon, but first I decided to join Judy in doing my 11 words. I would love to hear yours: it literally only takes a minute or two. A while ago I did an alphabet and loved doing that exercise too. I bet it will be interesting to look back on them at the end of the year.
Not sure if these are supposed to be wishes, or hopes, or the first thing that pops to mind.
1. cancer
2. hope
3. health
4. love
5. friends
6. Twitter
7. books
8. blog
9. family
10. coffee
11. smiles
That’s what came to mind… how about you?
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 22nd, 2010 §
If you knew me, you would know I am resilient. Tough, even in the face of the worst news. You would know I rise to the occasion every time. I might break down before, I might break down after– certainly after. But I will meet the challenges at each and every turn.
If you knew me you would know I smiled my way through many of my hard times, lied and smiled and said “fine” when many a person asked, “How are you?”
If you knew me you would know I am not a negative person, that I am not a pity-seeker, nor a martyr. You would know that I just do the best I can, and want to be dignified and strong, but am not in denial.
If you knew me you would know I love to do things for others, moreso than myself. You would know that in this turbulent portion of my life I have done what I can to show others what they mean to me, and how much I appreciate the kindness of strangers… how the smallest encounters can stay with me forever.
If you knew me you would know that I tried my best to make others feel at ease with my cancer. I always took pride in looking the best I could with what I had left. I created outfits around my scarves, and learned how to draw in eyebrows so that it wouldn’t be too obvious I had none. I tried to set a good example for my children, being honest with them about what was happening, loving them as much as I could, and asking the others who loved them to help them feel special and safe.
If you knew me you would know I care for others. When fellow cancer patients have asked to see what reconstruction looks like, I place my pride and embarrassment aside to honor their needs, their fears, their emotions. While some might (and do) hide their illnesses, I cannot. I have chosen for myself, and for my children, to be open about what cancer is, what it does, what price it demands. I believe that being this way will reduce the shame, the fear, and the confusion for them. Nothing has been more important to me than making sure my children understand what is happening and what the scientific reasons are. That honesty does not come at the expense of hope. Of optimism. Of sheer will. To remain mum about these feelings, these thoughts, these explanations of my experience, is to deny my life for the past four years. To do so says the suffering, confusion, and fear were ill-placed. To avoid talking about the reality of the dangers, the problems, the down-times is to not only be in denial but also to assert that my fears are irrational.
If you knew me you would know that I write not because I wallow in darkness, or think negative thoughts all the time. If you knew me you would know I write so that the emotions can be explored, pushed, pulled, twisted, and shared in order for me to be positive, optimistic, and strong for the rest of the world to see. It is the sharing of these ideas on paper, and sometimes reaching the hoped-for connection to people who read them (whether because they resonate with you, move you, educate you, or make you thankful that you have no idea what the cancer experience is) that keeps my words flowing.
If you knew me you would know I’m just a person, doing the best I can with what I’ve got.
Maybe it’s a bum rap, but it’s my bum rap.
It’s my chance to show what I can do:
Just watch me.
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 15th, 2010 §
5.2.2009
He caught me before I could put on my bright smile, restore the gleam in my eye, the flirt in my face.
He caught me lost in my disconnect, my swimming, floating, drowning.
“Are you okay?” he asked gently.
So gently I almost didn’t hear.
So gently it didn’t rouse me.
I stayed in that liminal state, half awake, half asleep.
Dozing in daylight.
Autopilot.
“I’m fine, thank you. Just tired,” I covered.
“I just wondered,” he said. “You don’t seem like yourself.”
“Thank you. Thank you for worrying. That’s so kind.”
Am I so transparent, I wondered. So transparent that this man who doesn’t even know my name can tell without a word when I’m not feeling well?
I turned my attention back to him.
“How can I help you?” he asked as someone approached and interrupted our conversation.
“Muenster cheese, please,” I requested of him. “A half pound.”
December 8th, 2010 §
Today I was interviewed in The Washington Post about my perspective on the news of Elizabeth Edwards’s death. Melissa Bell’s article is entitled “Elizabeth Edwards and the cancer question.” Click on the title to read the piece on the Post website.
Thanks so much to all of you who read the two pieces I wrote about Ms. Edwards and passed them on to friends:
On Resilience and Why I’m Crying.
Your comments mean so much.
December 7th, 2010 §
Doctors diagnosed my mother with breast cancer the exact same day Elizabeth Edwards heard those words in November, 2004.
Two years later, I too received a diagnosis of breast cancer.
After my diagnosis I went for consultations with two oncologists. Each doctor handed me two pieces of paper displaying bar graphs of the risk of my cancer returning and the risk that I would die from my cancer. These risks were broken down and calculated for four separate conditions: 1) if I did nothing, 2) if I received chemotherapy, 3) if I received hormonal therapy, and 4) if I received “combined” therapy (chemotherapy + hormonal therapy). On the top of the stark white pieces of paper in my doctor’s writing it says “Survival” on one and “Recurrence” on the other.
I made my decision rather easily: to treat my Stage II cancer I opted for a double mastectomy, chemotherapy, and adjuvant hormonal therapy. I had a husband and three young children; I wasn’t taking any chances– I would do whatever it took to get me into remission and give me the best possible chance of survival.
My mother, because of the particulars of her Stage III cancer opted for a lumpectomy, radiation, and chemotherapy.
And so, my mother and I had different treatment plans. But while our treatment protocols differed, we both required the same character trait to get us through: resilience. Appropriately, this is also the title of Elizabeth Edwards’s book.
Resilience has carried me through my mother’s diagnosis and mine. My son Tristan’s surgeries and treatments for congenital spine and hand deformities. The sudden death of my beloved mother-in-law in a car crash one year ago.
Resilience is the ability to bounce back, the ability to find strength and reserves when you think there are none, the guts to wake up each morning and, knowing something else might be just around the corner, say, “Okay, world, bring it on. I can take it.”
It’s also the manner in which you take it. Do you feel defeated? Resigned? Depressed? Angry? Do you channel those negative emotions into something positive?
Some people believe that negative things like cancer and grief are gifts. Books I’ve seen preach that you should change your thinking: these events are not traumas or tragedies; they are gifts, positive intrusions into your life.
I don’t think so.
I don’t think cancer is a gift.
I don’t think grief is an opportunity.
I think these things suck.
I think they hurt.
There’s a difference between thought and action: what you do with those feelings is what counts.
People don’t need to have the same beliefs or think the same way to feel a magnetic pull to one another.
Resilience is like a magnetic pull to life, a force that keeps me coming back for more
with grit,
determination,
heart,
hope.
Resilience whispers in my ear,
“You can do it.
Just keep going.
One foot in front of the other.
It will get better.
And, if it doesn’t, well…
you can take it.
Bring it on.”
Elizabeth Edwards reached many people because she was in the public eye, but inspirational people also live quiet lives. We can be inspired by Edwards’s grace and courage as she dealt with the challenging parts of her life in the same way we can find inspirational people around us each and every day. These are all people we can connect with and learn from. In doing so, we better ourselves. In doing that, we honor their struggle.
My mother is alive, and in remission. And the joy that I feel about having my own mother here is shared in equal measure by the sorrow I feel for Ms. Edwards’s three living children, Catharine, Emma Claire, and Jack, over the loss of their mother.
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.
December 1st, 2010 §
August 18, 2009
Summers bring change. The end of the summer signals the start of school for children, and for some it’s their first day of school ever. My youngest child, Tristan, will start nursery school in a few weeks. This month has brought the inevitable developmental milestones of potty training and sleeping in a big bed. My oldest child, Paige, will start middle school. She went to sleepaway camp for the first time this summer (and loved it). My middle child lost his first two teeth.
As I sit and watch and listen to the waves on our beach vacation I know the summer is drawing to a close. Some of you reading this are already sending your children back to school.
The months and years go by. Like all of you I mourn the quick passage of time. “Where did the summer go?” I hear my friends asking. Projects we hoped would be accomplished — tasks we hoped would be done — sit unfinished. Organizing photos, cleaning out a closet or a room, or reading that book a friend recommended; many things went undone in the last eight weeks.
Maybe you were lazy, maybe other things came up, maybe you were preoccupied with family obligations. Maybe you had an unexpected cancer diagnosis, maybe you got the flu, maybe your parents’ health was sub-par.
Regardless the reason, there can be a bit of disappointment when summer ends. The children we send back are taller, older, more mature. They’ve had lots of experiences to tell their friends about. Maybe they’re in a new school, maybe they’re now the oldest in school, maybe they’re now the youngest. New bus routes, new starting times, new friends, new backpacks, new teachers.
Some children will be starting back with a new experience to tell their teacher and friends: “This summer my mommy got cancer.” That one will not be an isolated instance, unfortunately; women around the country will be sending children to school with that summer report.
Growth happens in fits and spurts, not with smooth sliding grace.
With each phase comes
pain,
discomfort,
unease.
Restlessness,
sleeplessness,
yearning.
When I had the tissue expanders in my chest to make room for the implants that would replace my breasts after the mastectomies, every week my plastic surgeon would add to them. And each time after a “fill” they would feel tight. The skin would not be big enough for the volume inside, and it would react. The skin would feel the pressure and grow, that was the point of the process. Until the skin could replicate there was achiness, tightness, a ripping or tearing feeling.
A similar sensation happens during the days during pregnancy when you feel your belly just can’t accommodate the growing baby inside it. And yet it does. If it happens too fast you get a stretch mark, a sign your skin just couldn’t keep up. The growth was too rapid, too harsh, too vigorous.
I often wonder if mothers and fathers get psychological stretch marks when we are asked to accommodate changes we’re not quite ready for.
What can we do? What options do we have? None. We must “go with the flow” and do the best we can. Our children grow and change whether we like it or not. We do them no favors by trying to protect them, coddle them, and keep them young. We give them wings to fly when we give them tools to be
confident
and caring
and inquisitive
and trusting
individuals.
I am moved to tears as I watch my children grow.
I am moved by the succession of infancy, childhood, and adolescence.
I know that as a mother I lack many skills I wish I had.
But I also know that the words I have written in my blogs and essays will one day be a gift to them too.
Not a gift to the children that they are, but instead a gift to the adults that I am raising them to be.
Each August or September as they go back to school I marvel that another school year has passed and yet another is here.
I mark time differently now. I mark anniversaries not of weddings, but since diagnosis, since mastectomies, since chemotherapy began and since it ended, since implants, since Tamoxifen, since Arimidex, since oophorectomy. They are not just dates; they have meaning. They are meaningful for doctor visits and tests I must have done and dates I can stop taking drugs and dates I must know for other treatments.
No matter how you measure time it always goes too fast.
The growth happens too fast.
And the growing pains hurt for me.
The stretch marks might be invisible this fall, but they are surely there.
November 30th, 2010 §
I spent this afternoon at Sloan Kettering meeting with my consulting breast oncologist. I learned a lot of new information about estrogen loss after my surgical menopause two years ago. I’ll write more about what I learned at that meeting in future days.
I had a long trip home from New York City after there was an engine fire on the train I was riding on. Once home, however, I was happy to discover that an interview I gave for a new website on bone health after cancer was published!
Click here to read the piece.
November 21st, 2010 §
Never did we think we would share the bond of cancer. It’s certainly not something any mother wants to have in common with her child. And I know (now that I am a parent myself) that it must have been harder for her to hear MY declaration of cancer even more so than her own.
She was a trailbreaker for me. Like the sled that gets sent ahead to smooth and mark the trail of the Iditarod (I have dogsledding on the brain currently), my mother laid tracks for me. She was diagnosed a few years before I was, and I watched as she dealt with her illness. On her “off” weeks from chemo, when she felt well enough, she always came to visit. I think she needed to see some of her grandchildren and remember why she was going through the difficult treatments. She was Nana, she was Mom… she wasn’t a cancer patient.
I had never known anyone with cancer. I had never seen what happens to someone during chemo. And, to be fair, I only saw her after the worst was over. Just like I did, when the time came, she retreated to her bedroom during the worst days and kept it a private matter. But on those alternate weeks, I watched my mother’s head go bald. I watched her body go hairless. I watched her weaken, and suffer. I saw her remove her wig once the children had gone to bed and put on a green turban to finally give her head a break after a long day.
But I also saw something else in my mother. I saw the unfailing determination to be strong. I saw her desire to protect those around her. I saw her selfless devotion to family, and the importance of putting on a brave face. Most of all, I saw the smile. The gorgeous smile that lights up a room, always with bright red lipstick. My mother was extra beautiful to me in her display of courage, conviction, and unwavering persistence.
Neither of us knew that she was actually teaching me by example; within a year of her hair growing back in, mine would be coming out. We had no way of knowing we would soon start trading books, articles, and reports on advances in oncology.
I have learned many lessons from my mother. But for today, the one I am thinking about is one of the most valuable. You never know who’s watching you. You never know what’s around the corner. You never know when it’s going to be YOU… when it’s going to be your turn.
Trailbreakers are all around us. We just need to watch and pay attention. We need to learn lessons where we can. We need to have reserves we can tap into. Like a fallout shelter stocked for an emergency, we need to have people we can call on, experiences we can draw on to reassure us when crisis strikes. My mother did that for me. When it came to be my turn, I wasn’t ready; I wasn’t prepared. I wasn’t strong or brave or tough. But I did know I could get through it. After all, she did, and just knowing that fact helped me. I got tougher. I got braver. I got stronger. But having watched someone close to me go though some of the same experiences meant a lot.
I don’t think of myself as a role model. But I also know the reality: some of my friends will eventually get cancer. And I hope that my experiences can help them get through it, and see that it can be done. One reason I have decided to be so open and public about my life is that I wish I had been able to connect to someone my age, and hear what she had to say. Cancer’s impact on me– the changes in my life, my body, my relationships with my spouse, children, and friends– cannot be underestimated. Two years after my initial diagnosis, I still have lots to work through.
“If you want to know what the road ahead is like, ask someone who is on her way back home.” I have been there, and feel it’s my duty to tell what I’ve seen.
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.
October 27th, 2010 §
My last post (“These things are not wrapped in a pink ribbon”) was special. It was the hardest for me to post, the most personal. I said things in it I hadn’t shared with anyone; I described my feelings in my typical honest way. Readers loved it and embraced my effort. My heart soared.
I never want people to feel sorry for me– I don’t feel sorry for myself. I feel lucky. I live a great life now; I’ve had a great life so far. I’ve learned a lot along the way and gotten stronger and stretched myself in ways I could not have predicted.
Sometimes I wake up in the middle of the night panicked. The other night my worries about Tristan came to the surface. This week I have been working to get him additional physical and occupational therapy sessions from our town in preparation for kindergarten next year (if you don’t know about Tristan’s physical problems you can read about them here).
At 1:47 I lay in the dark wondering, “Who will care for this boy if something happened to me? What if I die — can anyone be his advocate the way I am?” I pondered that question for some time. I thought of the family in a documentary I watched two weeks ago called Monica and David. The film’s subjects have Down’s Syndrome and recently got married. They live in Florida with Monica’s parents in a condominium. Monica’s parents should be retired by now, enjoying their golden years. Instead, they have a full-time job caring for their adult daughter and her husband.
When I was watching the film I kept thinking about the same issue: who would help Monica and David if something catastrophic happened to Monica’s parents?
I realized that her parents have somehow come to terms with uncertainty, as we all must.
In graduate school my Ph.D. proposal dealt with management consultants and their claims of expertise. How did this group of professionals carve out a niche in the business market and claim that only they were qualified to objectively advise companies on what they should do to not only survive, but thrive? The certification of knowledge intrigued me. I never finished my dissertation, but many themes of study from years ago have stayed with me.
I never could have predicted that I’d be thinking about uncertainty in terms of cancer. I never could have known that those advising me on decisions would be oncologists and surgeons.
But just as Monica’s parents have learned to deal with that uncertainty, so must I.
Betty Rollin wrote that having cancer means being a little bit afraid at least some of the time. I know that’s true. But learning to manage uncertainty is a part of everyone’s life.
I think of individuals with obsessive-compulsive disorder that I talked about in a blogpost on the shows Hoarders and Obsessed. The specific type of therapy used in Obsessed (cognitive behavioral therapy) has been a great mental tool for me. Psychologists force affected individuals to “sit with their anxiety” until it reduces by half. In a nutshell, repeated exposures to the panic-inducing event prove to the patient that (the world will not end, they will not die, their loved one will not be harmed) if they do not give in to their compulsions.
The lesson? The body cannot exist in a heightened state of anxiety indefinitely. To cope, to survive, the level must (and therefore will) come down.
I take that insight and the examples I’ve seen and incorporate them into my life. I know that at each stage of my diagnosis and treatment for cancer I panicked. When we found out Tristan had physical problems I was terrified at the possible outcomes for what his disabilities could be (most of them thankfully not realized). But that seems to be a comfortable pattern for me: get new information, freak out for 24 hours, wake up and get to work learning, dealing,living. Taking our fears, whatever they may be, and learning how to better work through them can only help us… for uncertainty is a given.
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.
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.
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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