January 10th, 2011 §
January 30, 2009
I had two surgeons that day:
one just wasn’t enough for the job.
The surgical oncologist would take away,
the reconstructive surgeon would begin to put back.
Before I headed off into my slumber,
I stood as one marked me with purple marker.
He drew,
he checked,
he measured.
And then a laugh,
always a laugh to break the tension:
Surgeons must initial the body part to be removed to ensure
they remove the correct one.
But what if you are removing both?
How silly to sign twice,
we agreed.
And yet he did,
initialing my breasts with his unwelcome autograph.
The edges of the yellow fabric measuring tape he used
had purple fingerprints up and down their sides;
use after use had changed their hue.
And now it was my turn to go under the knife–
a few more purple prints on the tape.
I got marked many a time by him that year.
Endless rounds of
purple dots,
dashes,
and lines
punctuating my body
with their strange, secret blueprint
only those wearing blue understood.
We stood in front of mirrors
making decisions in tandem
as to how my body should and would take new shape.
Two years today and counting.
Moving forward.
Sometimes crawling,
sometimes marching,
and sometimes just stopping to rest
and take note of my location.
Numb inside and out,
but determined.
Grateful,
hopeful,
often melancholy.
Here comes another year
to put more distance
between
it and me.
Let’s go.
January 6th, 2011 §
Some days I say to myself, “Enough with cancer.”
Some days I say, “That’s enough. No more.”
No more thinking about it.
No more doing.
No more helping.
No more advocating.
No more educating.
No more communicating.
But then I say, “There’s still so much to do.”
There’s still so much to say.
There’s still so much to hope for.
There are still so many who suffer.
And so I am pulled back in,
Writing, talking, sharing.
Some days I want to talk about anything but cancer.
But I remember this is the new me,
This is my new life.
This is who I am.
And as long as there are others who come after me,
I will do what I can…
to hear,
to help,
to hope.
December 30th, 2010 §
One of my favorite romantic movie moments occurs between Denys (Robert Redford) and Karen (Meryl Streep) in the movie Out of Africa. The two lovers are out in the African desert at a fireside camp. Karen leans her head back into Denys’s hands. He washes her hair gently, then cradles her head in one hand and pours water from a pitcher, slowly and gently rinsing the soap from her hair after he’s done washing it. It’s a tender moment, to me utterly soft and sensual.
Before I left the hospital after I had a double mastectomy, the staff told me I might not be able to lift my arms over my head. With both sides affected, they said, I’d likely be unable to wash my own hair.
Recovery is slow in the week after surgery. A clear thin tube (like aquarium tubing) is literally sewn into a small hole in the skin under each arm. It carries excess fluid away from the mastectomy site as it heals. Fluid is collected into a small “bulb” and measured every few hours. After certain medical criteria are met, the drains are removed, the incisions sewn up, and then you can finally take that longed-for shower. Eight days after the surgery I received the all-clear. As any mastectomy patient will tell you, the day you get your drain(s) out is a great day.
Only then did I try to lift my arms. And hurt it did. I tried to shrink down into my body. I tried to be a tortoise withdrawing my head back inside my shell, shortening my height so I wouldn’t have to lift my hands so high to reach my hair. It was a painful challenge. I worked up a sweat trying to get my fingers to touch my scalp. I knew it was a questionable proposition. But I thought I could do it.
I thought about that scene— that romantic tender scene from Out of Africa. And I started laughing. I laughed and I laughed and tears came down my face. That cry hurt. It was one of those “I’m laughing and I’m crying and I’m not sure if it’s funny or sad or both and I don’t want to think about it so I’ll just go with it and I hope I’m not on Candid Camera right now…”
I was laughing at the absurdity of it. Here I was. It was my chance to get Clarke to wash my hair. My big fantasy moment. I was going to be Meryl Streep and he was going to be Robert Redford and he was going to wash my hair. Except I couldn’t move without pain. And I certainly wasn’t feeling romantic. I had just had my breasts removed. And I had these weird temporary breasts (tissue expanders) in their place. And my chest was numb. And my underarms hurt from having tubes in them for a week.
Because I hadn’t properly showered I still had purple Sharpie hieroglyphics all over my chest. And I had no nipples. And I had big scars and stitches in place of each breast. And a small angry scar with stitches under each armpit where the drain had just been removed. Let me tell you… this was clearly not how I envisioned beckoning my loving husband to come make my little movie scene a reality.
Now, don’t get me wrong. Had I called him from the other room, he would have done it in a second. He would have been there for me, washed my hair, and not made me feel the bizarre, odiferous (!) freak I felt at that moment. And I would have loved him for it. But I did not want him to see me like that.
In that moment I had a dilemma. What kind of woman was I going to be?
What kind of person was I going to be with this disease from that moment going forward?
I was going to push myself. Do it myself.
I wasn’t going to be taken care of if I could help it. I knew I was going to have trouble asking for help, have trouble accepting help. I knew these things were going to be necessary. But I also knew they were going to cause me problems. That’s the kind of person I am.
I knew asking for and accepting help were actually going to make me feel weaker than I was already feeling. And it was only the beginning. I knew these actions were going to make me feel weaker than I knew I was going to get. I wanted to do everything myself for as long as I could. That was what was going to make me feel alive: doing it myself.
I am not sure I did the best job washing my hair. I probably missed a spot or two. But I did it. And I didn’t ask for help.
Granted, it was something small.
But in that particular moment, on that particular day, that particular act gave me a feeling of pride as big as anything else I could have possibly accomplished.
a postscript: I wish I had been more accepting of help in the early days. I wish I had not seen it as a personal “weakness” the way that I express here. I don’t want to change what I wrote then, but I do want to say that I don’t think I was right to push myself so hard. If I had it to do over again I would accept help more often; maybe not for the hair-washing, but definitely for other tasks that I should have outsourced. I have learned from my experience.
December 24th, 2010 §
Originally written December 25, 2008
(three weeks after my salpingo-oophorectomy and two years after my diagnosis of breast cancer. This was actually the first blogpost I ever wrote.)
I’ve only cried once today. That’s not too bad. But the day is not yet done. Today, again, I’m thinking of the things that cancer has taken from me. First, let me say that I am well aware of the blessings I have. I remember them each and every minute of every day. They are what keeps me going, keeps me fighting. But today, again, I’m pulled into what’s gone, what’s irretrievable, what’s changed.
The body parts are gone, of course. My feeling of immortality. Of safety, of security. I’m vulnerable now. And I feel it. Part of me wants to blaze down I-95 at 100 miles an hour because I’ve stared down cancer, so what can touch me now? Taking risks is a popular grief reaction. On the other hand, a part of me wants to curl up in bed and not come out.
Today, on Christmas, when the childlike wonder is all around, I feel like I am watching it from high above me, as it happens TO ME, around me. I smile, I do what I am supposed to do, I play the “Santa game” with my children. I eat delicious food. I gather up the gift wrap strewn about the living room. I pile the presents in the kids’ rooms. I pack their suitcases for their 3:30 a.m. wakeup for their winter vacation. Half my family is leaving me tomorrow. They’ll be back, of course, but they are leaving. And while they are gone I will ponder the sadness that has settled like a cloud since my latest surgery almost a month ago.
I know I’ll be fine… everyone tells me so, as if to will it to be that way. Even in my darkest moments I know it is only temporary. But I am angry at cancer. Angry at the bad twist of fate that makes me unable to travel this year, unable to be myself, unable to shake this feeling that the dark cloud just seems to keep following me, like those creepy paintings in the museum whose eyes seem to follow your every move.
And knowing the other people who are similarly sad today, those who are remembering loved ones lost, and those who are suffering in pain, and those who will head in for more chemo and surgery and therapies before the year is out are also forever changed by the great equalizer of cancer.
To anyone who reads this and thinks it sounds so odd, so foreign– something that happens to “someone else”… I am so happy for you. I am jealous of you. I remember that feeling, but I am almost getting to the point where I am unable to remember it. I never thought it would be me thinking this way, feeling this way. But it is me. And it’s taking a long time to grieve for that life I thought I would have.
Maybe that’s what it is.
I’m in mourning.
I’m mourning the life I thought I would have.
And only time can help that.
December 20th, 2010 §
Four is just a word. So is three. But once again today I will change one word on the welcome page of my website.
“It has been three years since hearing the words ‘You have cancer,'” the first sentence says.
And now, today, it becomes four.
I think about days like the one four years ago — days that start innocently, normally, benignly. In the hours leading up to the mammogram I wasn’t worried about anything.
I think about the sentence that changed my life.
I think of where I’ve been, where I am, where I am going.
I think of those I’ve met along the way: new friends, doctors, nurses, strangers.
I think of those who have died from cancer and other causes since I was diagnosed.
I think of the progress we’ve made and the distance we have yet to go.
I think of what today might bring, and tomorrow.
And then, in a sudden reversal, I stop myself from thinking too much.
“It’s time to go live my life,” I tell myself. Thinking is good, but only so much.
“It’s time to go live my life,” I tell myself…
Right after I change that one word.
To read about the chronology of my diagnosis, go here.
December 17th, 2010 §
originally published September 12, 2009
My friend Andrea found out she needs to have chemo. I cried a lot the day I found that out. Last night she emailed me that she was thinking about the whole “losing her hair” thing. She has gorgeous hair. Thick. Straight. Reddish-brown, in the sun I’d say it has a honey shine in it. She usually wears it back in a ponytail, as she says, “taking it for granted.”
I started writing her back to tell her that focusing on her hair wasn’t silly. There are many things about cancer that are real worries. One of them is going bald. Especially for a woman. And as I typed to her I realized the words were flowing fast and furious.
I realized all the things people had said to me when I was worried about losing my hair and all of the things people had said to me after it eventually happened.
Everyone wants to reassure you that it isn’t as bad as you think it is.
Some days you convince yourself it isn’t that bad.
Some days you are sure they are all lying to you.
Either way, you get through the days.
The day you take that hat or wig or scarf off and wear your newly-grown stubble or “mouse fur” out in public is a great day (My first hair was so fine and soft and thin that it didn’t resemble hair at all… I called it mouse fur because while it blissfully covered my head and was dark, it couldn’t be cut or styled).
So, for my friend, and for other women who are getting ready to start chemo (and those who bravely walk through the world every day without hair because of alopecia and other conditions), no matter what, it matters.
No matter what anyone says…
all the things they will say:
It’s only hair.
It’ll grow back.
You’ll look so pretty anyway.
With a face like yours it won’t matter.
We’ll get you a cute wig.
We’ll get great scarves.
It’ll grow back in no time.
Maybe it’ll be better after it grows in.
It might be curly.
It might be straight.
I know someone whose hair came in gray.
I know someone whose hair came in red.
I know someone whose hair came in black.
I know someone whose hair came in white.
Hers came in curly.
Hers came in straight.
Did you see hers?
It looks great.
Did you see hers?
It looks awful.
I like her better with short hair.
I liked her better with long hair.
You’re gonna look great.
I don’t know what I’d do.
I don’t know how you do it.
I don’t know how you’re gonna do it.
You are so brave.
You are so strong.
You can do it.
You can beat this.
No matter what anyone says–
It is just going to suck.
Bigtime.
You may shed many tears over this one.
It may be harder than you thought.
I’ve heard brave women say it was harder than the actual chemo.
Reports show women actually turn down the chemotherapy they need because they don’t want to go bald.
It’s real.
It’s hard.
If it weren’t,
Women wouldn’t cover their heads.
They would just walk around bald.
They wouldn’t care.
But hair matters.
To us,
To our kids,
To our husbands,
To our friends.
My hair has never been the same since chemo.
I’m not alone in that.
In fact,
My hair now grows “the other way”…
My part is on the opposite side of my head than it used to be.
I think that’s kind of neat.
There’s the way my hair was B.C. (before cancer)
And the way it is now.
It is a big deal.
Don’t let anyone minimize it.
If they do, make them go shave their heads.
Not just clipper cut.
Straight razor shave it until there’s nothing left.
Then the eyebrows.
Then the eyelashes.
And then the stuff they might not think about.
Every piece of body hair.
Of course there are jokes.
And giggles.
The Brazilian wax done for you.
It’s funny.
But not so funny.
Then when your nose hairs fall out you suddenly realize how
Much you needed them.
Your nose runs constantly.
And it’s embarrassing.
Mine dripped clear liquid constantly.
I was so embarrassed.
No one had told me about that part.
I had a tissue stuffed in every pocket.
Because there were no hairs to stop the drip.
Chemo drip.
You try to imagine what it will be like.
You try to picture what you will look like bald.
You pull your hair back,
Slick it back,
Try a wig on to see what it might look like.
But nothing can prepare you.
For that crappy day,
Two weeks in.
When you scratch an itch
Or touch your head
And take away a handful of hair
Or find it on your pillow.
And the sight of it is so sad,
But so disgusting
So repulsive,
That you need it gone.
And then if you need me
You will call me.
And I will come.
And I will cut it.
Or maybe I will just come and cry with you.
And remember what it felt like.
No matter what anyone says,
It isn’t nothing.
It is something.
And even in the scheme of all of the things to be afraid of with cancer,
How you feel about losing your hair is real.
It matters.
And I remember.
December 7th, 2010 §
I didn’t know Elizabeth Edwards. In fact, I wrote a piece critical of her when she initially stood by John after his affair. I was disappointed when she gave an interview on CNN in May of 2009 and spoke only of John’s “imperfection” rather than calling him the cheater he was and kicking him to the curb. I was angry she hadn’t used her interview time to talk about herself, her cancer, her life: the topics I wanted to hear about. I was angry at her for not claiming her remaining years of life as her own.
So why am I sitting with tears in my eyes because she has died?
I cry because it makes me feel vulnerable and scared of what this disease can do to me: what it did to her.
Yes, I know… there are plenty of men and women who get cancer, have treatment, and stay in remission for the rest of their lives. And, in essence, isn’t that what every cancer patient hopes for, as Betty Rollins wrote, “to die of something else”?
I don’t think it makes me pessimistic, depressing, or negative to think that I am vulnerable.
It’s the truth. It’s my truth.
Anyone who hasn’t been to the oncologist with me to see my risk-of-recurrence charts, my mortality charts, my decision-making discussions along the way can’t say to me “Oh, don’t worry, that won’t be you.” No one, including me, knows how it will go.
People tell me: stay strong, just think positive, you can’t generalize from her situation.
I respond: I am strong, I hope for the best. I don’t think positive thinking is going to save me if there are remaining cancer cells still in me.
I hope that people won’t say to someone who has been diagnosed with cancer, “Don’t worry, what happened to Elizabeth Edwards won’t happen to you.” Because while we do everything we can to ensure we die of something else, it just isn’t always the case. In 2006 her oncologist told her that there were many things going on in her life, “but cancer was not one of them.” Things change quickly, cancer can recur when you least expect it.
I have sympathy for her family. I cry for her children. I am saddened about the years she spent with a man who didn’t deserve her. I am angry about the time she wasted on him. I hoped she would be an example of someone who would keep cancer at bay.
I grieve for that hope, now gone.
December 2nd, 2010 §
In August, the editors at Cancer Bone Health asked me to write a blogpost for their launch. Today it went up on their new website.
click here to read it:
Standing straight: Words of welcome from a survivor
The profile piece they wrote about me and posted a few days ago appears here.
November 23rd, 2010 §
Originally published June 24, 2010
There comes a point in your life when you realize that your parents are people too. Not just chaffeurs, laundresses, baseball-catchers, etc.– but people. And when that happens, it is a lightbulb moment, a moment in which a parent’s humanity, flaws, and individuality come into focus.
If you are lucky, like I am, you get a window into that world via an adult relationship with your parents. In this domain you start to learn more about them; you see them through the eyes of their friends, their employer, their spouse, and their other children.
Yesterday I sat transfixed reading Katherine Rosman’s book If You Knew Suzy: A Mother, A Daughter, A Reporter’s Notebook cover to cover. The book arrived at noon and at 11:00 last night I shut the back cover and went to sleep. But by the middle of the night I was up again, thinking about it.
I had read an excerpt of the book in a magazine and had already been following Katie on Twitter. I knew this was going to be a powerful book for me, and I was right. Katie is a columnist for The Wall Street Journal and went on a mission to learn about her mother after her mother died (on today’s very date in 2005) from lung cancer. In an attempt to construct a completed puzzle of who her mother was, Katie travels around the country to talk with those who knew her mother: a golf caddy, some of her Pilates students, her doctors, and even people who interacted with Suzy via Ebay when she started buying up decorative glass after her diagnosis.
Katie learns a lot about her mother; she is able to round out the picture of who her mother was as a friend, an inspiration, a wife, a mother, a strong and humorous woman with an intense, fighting spirit. These revelations sit amidst the narrative of Katie’s experience watching her mother going through treatment in both Arizona and New York, ultimately dying at home one night while Katie and some family members are asleep in another room.
I teared up many times during my afternoon getting to know not only Suzy, but also Katie and her sister Lizzie. There were so many parts of the book that affected me. The main themes that really had the mental gears going were those of fear, regret, control, and wonder.
I fear that what happened to Suzy will happen to me:
my cancer will return.
I will have to leave the ones I love.
I will go “unknown.”
My children and my spouse will have to care for me.
My needs will impinge on their worlds.
The day-to-day caretaking will overshadow my life, and who I was.
I will die before I have done all that I want to do, see all that I want to see.
As I read the book I realized the tribute Katie has created to her mother. As a mother of three children myself, I am so sad that Suzy did not live to see this accomplishment (of course, it was Suzy’s death that spurred the project, so it is an inherent Catch-22). Suzy loved to brag about Katie’s accomplishments; I can only imagine if she could have walked around her daily life bragging that her daughter had written a book about her… and a loving one at that.
Rosman has not been without critics as she went on this fact-finding mission in true reporter-style. One dinner party guest she talked with said, ” … you really have no way of knowing what, if anything, any of your discoveries signify.” True: I wondered as others have, where Suzy’s dearest friends were… but where is the mystery in that? To me, Rosman’s book is “significant” (in the words of the guest) because it shows how it is often those with whom we are only tangentially connected, those with whom we may have a unidimensional relationship (a golf caddy, an Ebay seller, a Pilates student) may be the ones we confide in the most. For example, while Katie was researching, she found that her mother had talked with relative strangers about her fear of dying, but rarely (if ever) had extended conversations about the topic with her own children.
It’s precisely the fact that some people find it easier to tell the stranger next to them on the airplane things that they conceal from their own family that makes Katie’s story so accessible. What do her discoveries signify? For me it was less about the details Katie learned about her mother. For me, the story of her mother’s death, the process of dying, the resilient spirit that refuses to give in, the ways in which our health care system and doctors think about and react to patients’ physical and emotional needs– all of these are significant. The things left unsaid as a woman dies of cancer, the people she leaves behind who mourn her loss, the way one person can affect the lives of others in a unique way… these are things that are “significant.”
I woke up in the middle of the night thinking about the book. My head spun with all of the emotions it raised in me. I think that part of the reason writing has become so important to me is precisely because I do realize that we can die at any moment. And if you don’t have an author in the family who might undertake an enormous project as Katie did, where will that explanation of who you were — what you thought — come from?
Is my writing an extension of my desire to control things when cancer has taken away so much of this ability?
Is part of the reason I write an attempt to document my thoughts, my perspective for after I am gone… am I, in a smaller way, trying to do for myself what Katie did for her mother?
If I don’t do it, who will do it for me?
And in my odd way of thinking, am I trying to save anyone the considerable effort of having to work to figure out who I was– deep down?
My blog has the title “You’d Never Know”: I am telling you things about myself, my worldview, and my life, that you would otherwise have no knowledge of. One of the things people say to me all the time is, “You’d never know to look at you that you had cancer.” After hearing this comment repeatedly I realized that much of our lives are like that:
If we don’t tell someone — share our feelings and experiences — are our lives the proverbial trees falling (unheard) in the forest?
What if you die without being truly understood?
Would that be a life wasted?
If you don’t say things for yourself can you count on others to express them for you?
Further, can anyone really know anyone else in her entirety?
After a loved one dies, there always seems to be at least one mystery person: an individual contacts the family by email, phone, or in person to say, “I knew your loved one: this is how I knew her, this is what I remember about her, and this is what she meant to me.” I know that this happened when Barbara (my beloved mother-in-law) died suddenly last fall. There are stories to be told, memories to be shared. The living gain knowledge about their loved one. Most often, I think families find these insights comforting and informative.
Katie did the work: she’s made a tribute to her mother that will endure not only in its documentation of the person her mother was (and she was quite a character!) but also in sharing her with all of us. Even after her death, Suzy has the lovely ability to inspire, to entertain, to be present.
I could talk more about the book, Katie’s wonderful writing, and cancer, but I would rather you read it for yourself. I’m still processing it all, making sense of this disease and how it affects families, and being sad that Katie’s children didn’t get to know their grandmother. Katie did have the joy of telling her mother she was pregnant with her first child, but Suzy did not live long enough to see her grandson born. In a heartwarming gesture, Katie names her son Ariel, derived from Suzy’s Hebrew name Ariella Chaya.
I thank Katie for sharing her mother with me, with us. As a writer I learned a lot from reading this book. I’ve said many times recently that “we don’t need another memoir.” I was wrong. That’s like saying, “I don’t need to meet anyone new. I don’t need another friend.” Truth is, there are many special people. Katie and Suzy Rosman are two of them.
November 21st, 2010 §
One of the most destructive emotions in my life is regret. Thankfully, I don’t have many decisions in my life that I would change if I had the chance. But there is one big medical one that I question daily: my decision to have my ovaries removed 18 months ago to put me into menopause and remove/significantly decrease some major hormones from being produced in my body.
In consultation with my oncologist, after chemotherapy was over I decided to take ovarian suppression injections. My period had come back within a few months of chemo ending even though I was in my late 30s. I was not going to have any more children. The tamoxifen I was taking had already started giving me ovarian cysts and I needed numerous ultrasounds to monitor them. Ovarian cancer was always in the back of my mind.
After one year of the injections (in which a thick needle is plunged under the skin of your belly and a small pellet of medication is placed which dissolves slowly over the course of one month) I decided I wasn’t going back; I couldn’t tolerate the questions every month with a menstrual cycle and hormone fluctuations. With my kind of breast cancer (estrogen and progesterone receptor positive), any remaning cancer cells in my body would be “fueled” by these hormones. I wanted to minimize them, and hopefully reduce my chance of cancer recurrence.
And so, after the year of injections I consulted with some surgeons. They felt that the ovary removal (oophorectomy) would be no harder on my body than the injections I’d already been taking. I had laparoscopic surgery in December of 2008 and felt good about the aggressive stance I was taking.
Then my world caved in. Within weeks of the surgery I was depressed. My hormones were bottoming out. Not just the estrogen and progesterone, but other ones the ovaries produce. I was plunged into menopause and all of its agony overnight. My hormone levels went not to the point of a menopausal woman (there are still some hormones present) but as my oncologist told me “of a prepubescent girl.”
I was depressed. I cried constantly. I was still getting over the surgery itself (not exactly the “walk in the park” that had been described to me) and had to miss the family Christmas vacation that year. Clarke and the 2 older kids went to Wyoming while I stayed with Tristan and tried to heal and regroup.
The joint pains started, the bone loss continued, the depression loomed. I had to watch my cholesterol numbers and must take osteoporosis medication after breaking ribs in a fall. I have sexual side effects that can’t be remedied with estrogen creams or pills. In the future I worry about the increased risks of dementia, heart disease and lung cancer without the protective benefits of estrogen.
But worse than any of them, the migraines began. I’d never had them before, but the overnight hormone drop brought them on fast and furious. Up to 15 a month.
It really is “always something.” Each decision is not isolated; everything I do to my body has ramifications and risks. I don’t know if I would have made the same decision if I knew what pain I was bringing on myself. All I know is that fear is a motivator. At the time all I could think about was the cancer. I felt that anything I could do to decrease the chance of my cancer recurring was worth it.
Some days I’m not so sure about that. I believe the doctors I consulted vastly underestimated the effect that this surgery can have. Perhaps as more women electively remove their ovaries if they test positive for the BRCA-1 and 2 genes we will learn more about the effect it has on our bodies (I have tested negative for both of those genes but it is a main reason women opt to have oophorectomies).
There’s no way to know if I made the right decision.
If my cancer stays in remission I will feel better about my decision. But as side effects mount and long-term health issues occur throughout my life because of this surgery and its repercussions, I can’t help but question if my fear may have pushed me too far.
November 21st, 2010 §
Sometimes I think this quality manifests itself in perceived negativity. Every so often, Clarke accuses me of focusing on the negative. I can’t say I think he’s wrong, I just think he’s wrong about what drives the concern.
It’s not that I focus on the negative. I just want to be prepared for whatever I am about to confront—good or bad. Of course, being prepared for bad things is harder. But I’m not even sure that I’m ready for good things to come my way.
Here it is in a nutshell: I have a terrible fear of being unprepared.
I never entered “suitcase parties.” These type of lotteries were popular in college. A business would purchase 2 round trip tickets and donate them to a sorority (or other organization) as part of a fund-raiser. You packed a suitcase and went to the drawing. If they chose your name, you and a guest would leave directly from the party to go to the airport.
The twist was, you had no idea where you would be going. You packed your suitcase and showed up without knowledge of whether you were headed to the Caribbean or Vermont. It could be anything, so you had to pack accordingly.
Sound fun? Not to me. Not appealing—at all. I never entered any of them.
I was always like this. But it really changed in December of 2006. The one time I wasn’t worried I got bitten on the ass. When I went back for my second mammogram I wasn’t concerned– in the least. There was no lump, I had just had a clear mammogram 18 months earlier, I was 37 years old, and I had had multiple benign lumps removed throughout my life. Every time I had needed a lump removed, I had worked myself into a tizzy of fear. And each time I had been proven wrong: the lumps were benign.
So to have vague density issues in one breast a few months after I stopped nursing my third child did not provoke worry in me at all.
So when they kept taking pictures I wasn’t worried. When they did the ultrasound I wasn’t worried. When the technician called in the radiologist to look at the ultrasound images I wasn’t worried. When they took me into a separate “discussion room” I still wasn’t worried.
But then the radiologist said words that scared me… hearing words I wasn’t prepared for was devastating.
It’s as if the words she said weren’t in my vocabulary. And therefore, when I heard what she was telling me… it’s probably cancer… I had no reflex in place to catch me while I fell. Here I was, unprepared in every way to digest the news.
So from then on I was fixated on preparing for what lay ahead. I didn’t want to be unprepared for the biopsy, for the double mastectomy, for the chemo. I walked through the world in a blur for that month while decisions were made. My body shut down and I was anxiety-laden. I knew I needed to get a plan. In getting a plan I would feel more powerful, more in control. And I did. Once my decisions were made about surgery and adjuvant therapy (chemo and long term hormone therapies), I think I became resigned. I needed to know what to expect. I needed to know what I might be able to do to take care of my family and how to carry on during what would likely be one of the toughest physical and emotional challenges of my life.
When my hair started to come out in clumps on the morning of my second round of chemo I went to the garage with my clippers and shaved my head. I needed to take control.
“What ifs” are my lifeblood. What if my cancer comes back? What if I die from this? What if I have such a poor quality of life that it’s not worth it anymore? What if I made a mistake being as aggressive as I have been?
The passage of time is helping me with these questions. I know you can’t control it all. And I don’t have the energy to worry all the time. But I also know that in being prepared I am self-soothing, rubbing my mental worry beads, trying to reassure myself that things will be okay.
I’m not sure I believe that yet. It’s a daily struggle. But I learned my lesson by dropping my guard. As a student of life, I failed once. I won’t do it again. Control what I can, be prepared for what I can’t. That’s as far as I am right now.
November 21st, 2010 §
Many of my friends are going through it. You know, it. The anomie that occurs for stay-at-home parents when their children become more independent and they are left at home wondering where that part of themselves, independent of spouses and children, went. “What do I do next?” they ask themselves. “Where do I go from here?” Often in limbo, not having enough time to get a full-time job or needing the flexibility for school vacations and afterschool hours, stay-at-home parents struggle to re-enter society with their (often) outdated skills, wardrobes, and knowledge base (the words to Wiggles songs do not count as expert knowledge).
I’m being spared this aimlessness because of my cancer diagnosis three years ago. My youngest child is 4, he’ll start kindergarten next fall. He has some physical issues, abnormalities in his hands and neck which mean I’ll need to spend more time dealing with the school system about his special needs. He’ll need physical and occupational therapies for the foreseeable future, but he’ll be in regular school from 8:30 to 3:00 every day.
Now that I am in remission my weeks are still full with doctors, managing side effects, and helping others going through the diagnosis and treatment process. But more often than not I’m at the computer writing. I’ve carved out something that gives my life meaning apart from my family. And while my cancer history has involved all those who know and love me, I still think of it as mine. My cancer. Why? Because as much as someone with cancer can try to explain what it is, what it feels like– what the cancer experience is— I am not sure we ever can fully succeed. Like trying to explain the love you have for a child to someone about to have their own child, you just don’t get it until it happens to you.
And so, the cancer is mine. And that possession is providing my step to the next phase of my life. I don’t wonder what I’m going to do with my time… I just wonder if I will have enough time to write all I want to write– if I can express for some who cannot express for themselves what this cancer experience can be.
November 8th, 2010 §
One of the phrases I heard often during the emotional events of the past few years is “Things happen for a reason.” The other night while Clarke and I were watching a reality show one of the contestants spoke the same phrase as she predicted elimination from the show.
“I think everything happens for a reason,” she said.
“No they don’t!” I reflexively argued with the screen.
“Why does that make you so upset?” Clarke asked.
“Because it’s just a way that this woman is rationalizing why this bad thing– elimination from a contest she’s competing in– is okay. She’s trying to tell herself that things really aren’t as bad as they are. She’s trying to console herself that there is a purpose in her suffering… that it will lead to something bigger and better, and that is just not necessarily the case!” I said.
I don’t think things happen for a reason and I find it unsettling when people want to tell me that cancer, or my mother-in-law’s death, or anything that has been a challenge has happened as part of some grand plan for something better.
I just don’t believe it. And I don’t want you to believe it about my life, either.
I think things just happen — and when they do, you have to decide how you are going to handle them. Those actions, those responses, can teach you lessons, but they are lessons you teach yourself. You can grow, get stronger, do something that you otherwise never would have. Alternatively, you might learn that you made a mistake and should deal with a situation differently the next time it comes up.
My attitude?
Don’t give away the credit.
Don’t minimize the hurt or disappointment.
Don’t rationalize why it isn’t as a big a deal as it is.
There isn’t necessarily a purpose in suffering; it’s not part of a causal narrative that “passing the test” will get you to the next step. You make your own tests, you find your own lessons. But using the word reason implies that it was given to you, designed for you.
And I just don’t believe that.
February 19th, 2010 §
I took my friend Brenda out to lunch for her birthday today. While we were sharing an appetizer, a group of four people entered the restaurant: three men dressed in business attire accompanied a woman with a knit cap on. I realized in an instant she was bald underneath that covering and postulated that the hat would not be coming off.
They took off their coats and sat down at the table. I watched them for a while, from a distance, across the restaurant. The hat did not come off. She was bald, most certainly, and likely undergoing chemotherapy. My mind started to wander, and I started to wonder. Was she at a business lunch and able to keep working during this crisis? Was she done with treatment and waiting for her hair to grow back in or was she on an “off week” of chemo when food might be somewhat appealing?
I kept looking at her hat. It was freezing cold out today, so it wasn’t particularly out of place. But I kept staring at it. It looked handknit. Had someone she knew made it for her? Had she gotten it from the basket at the cancer center where people knit and donate hats for cancer patients?
I wonder what she’ll do with the hat when her hair grows back in: will she throw it away? Burn it? Give it to someone else who needs it? After wearing those head coverings day after day, you don’t want to lay eyes on them again. After my hair grew back, I saved my scarves for a friend’s sister who was set to start chemo shortly after I finished. I recently saw pictures of her wearing them. It’s odd to see them, associated with so many memories for me, on her head too. Now I have the scarves back, and some have already been lent to another member of the club.
My wig, worn twice, is packed away in the basement. I will soon donate it to a charity that provides wigs to women who can’t afford them. I hate that wig. I hate what it looks like. I hate how it feels. I hate how I looked in it. Twice I wore it, and I had to keep from tearing it off every second it was on my head. It wasn’t me; I felt like someone else in it. But I just can’t get rid of it yet. It’s like a trophy for walking through the fire.
I wonder if that woman I saw at lunch today feels like that. She and her group finished their meals and left before I did. I was really sorry I didn’t get to tell her that her hat looked great on her.
January 14th, 2010 §
I wish I had the energy of my youth.
I wish I had the body.
I wish I had the fearlessness, the spunk, the drive.
I wish I could have a conversation with that young girl,
bright-eyed and full of wonder.
I wish I could tell her what lay ahead.
I wish I could tell her to gather strength, and wisdom, and patience like a squirrel gathering acorns for the winter.
“Save those things up,” I’d say, “you are going to need them… every last bit.”
I wish I could share the perspective I’ve gained along with all of the love.
But I can’t go back to that time,
I can’t go back to that place.
I can’t rewrite what’s happened,
I can’t do it all again.
I guess I must have done something right along the way for when it came time to fight I did,
and I did it well.
But that struggle took its toll on me and I am quite sure I will never, ever be the same.
You tell yourself “they’re only breasts.”
You say, “I don’t need ovaries, I’m done having children.”
But that obscures the truth.
The truth is that it does matter,
they do matter.
They say my uterus is atrophied.
It almost sounds funny when you say it.
“Who cares? What does that matter?”
It does. It does. It does.
To get rid of all hormones gives me a better chance at avoiding a recurrence, but there is a price to be paid.
No estrogen matters more than I ever thought it could.
It feels worse than taking injections to suppress my ovaries, worse than taking Tamoxifen. Those were easy. I had no clue what was ahead.
I wear the skirt, I put the makeup on, I walk the walk.
But I do not feel like a woman anymore.
I’m proud of what this body has done for me:
3 beautiful children,
surviving cancer,
healing the broken bones, the infections, the autoimmune diseases.
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.
Link to Twitter