June 10th, 2013 §
I have my list of things I worry about.
First on my mind in the morning,
Last in my head at night.
And if I pop awake In the middle of the night?
Yes, the list is there too.
Across the aisle from me on the train to New York City last time sat a woman.
At one point on the journey she flipped huge black bug-eye sunglasses from the top of her head down over her eyes, her look now an insect dressed in designer clothes.
She reached in her purse,
grabbed a strand of worry beads and started kneading them.
With a rapid-fire reflexiveness she started moving one bead at a time .
Each only moved about half an inch down the string.
From the worry side to the safe side.
I could hear the rhythmic mantra of the beads again and again and again,
Quieter but still audible over the clickity clack pattern of the train itself.
I wondered what her worries were.
I wondered if she would add mine to hers.
Or trade with me, even.
Sometimes we need to do something with that energy.
For her it was tiny movements, thumb and forefinger
Pinching and sliding ivory beads on a round string.
We have our rituals when things get bleak. Some pray.
I do not.
There is a coping that comes with grief, a way to release the tension that grips us when things are bad.
Some days it does feel like it eats from the inside out.
When you must come to terms with what you fear
and what you dread
and all you want to do is lay down on the floor like a petulant two year old
and kick and scream about the unfairness of it all…
As if the universe gives a damn that life hasn’t been fair to you.
Clearly it doesn’t.
So I do not appeal to the universe to change what is.
I turn to my balms. I turn to research.
I turn to science.
I turn to determination and hope which are the last things I can cling to,
fingertip by fingertip,
like the cat on that iconic poster that says “Hang on, baby.”
Inner strength is sheer will.
My claws are firmly entrenched.
There is no other way to be.
There is no justice.
It’s up to me to come to terms with the weighted side.
That is where I live right now.
And so every day, when I wake up in the pre-dawn hours and contemplate my worry list and
come to terms with the day that is about to dawn,
I gather strength,
summoning it from its slumber.
“Here we go,” I say.
“Let’s do this.”
Another day is here.
I will see another.
Hang on, baby.
June 8th, 2013 §
Two weeks ago we had a family photo session with my friend Julia Arstorp. Julia has taken numerous series of photos of us through the years and I really wanted to have updated photos of all of us. The children have changed so much in the past two years! I will share some of them throughout the next few months. I have updated my Welcome page of the blog with a few of them too. I know some of you only read these posts by email so you can always take a peek at the home page to see what’s new.
One of the photos I love most is this black and white one with our new dog Lucy, a Pembroke Welsh Corgi that we got in January. If you follow me on Twitter you know how much I love her. She is my first dog ever… the kids always wanted a dog but I wasn’t sure about the commitment. Clarke had a great Corgi named Pearl when we met so I knew the breed and loved their personalities. Lucy is two now and she has brought such joy to our lives.
Most people who know me are shocked I not only let Lucy on the bed and throughout the house. My attitude is she is a part of our family so she gets to share. She’s not a big snuggler (prefers to lay next to you or under the bed) but we have had some great naps together over the past few months. She is great at fetch which is a lot of fun to watch as her little legs run so fast and her big ears get pinned back to her head as she scurries… she is fast on those little legs!
The end of the year is very busy now with school ending for all of the kids. Colin will graduate from elementary school and start at the middle school in 6th grade in the fall. Tristan will be going into second grade and Paige will be a high school sophomore (eek!). Right now we have baseball playoffs, karate belt testing, and some upcoming visits from family.
I’ve been managing the side effects from the new Aromasin/Afinitor regimen pretty well. Right now I’m still on 7.5 mg of Afinitor a day, my biggest problems from the drug combo are severe muscle and joint pain, thyroiditis (I also have Hashimoto’s Disease), loss of appetite with weight loss, and migraines. The mouth sores and head irritation have improved.
Bloodwork yesterday showed a drop in my tumor markers, an indication that it is still working now after about 2 months. This gives me a two week reprieve in worry. I really do live in two week increments right now. I’ve been able to do all of the things I need to do and most of the things I want to do. I am learning more and more the difference between these two things.
I’ve attended every single one of Colin’s baseball games. I got all three of them to the dentist for checkups and their regular doctors’ appointments. I keep a regular schedule right now but try to rest more on weekends when I can. I am glad for the normalcy that my days mean to them and to me. We all know it’s not truly normal, of course, but the comfort of routine is real, especially to them. I find it hard to believe the last 8 months have been since my diagnosis of metastatic breast cancer.
I gave an interview to the Daily Beast this week about Komen’s cancellation of many of their walks this year because of drops in funding despite Nancy Brinker giving herself a pay raise to $685,000 a year. I wish the piece had gone into more depth about the lack of funding for metastatic research, but I still think some good points were used from the interview. You can read it here.
If you are looking for a place to donate money for breast cancer research, I do have a donation page at Sloan-Kettering which funnels money to metastatic breast cancer research. You can see the page here. It has raised about $17,000 since last fall.
I hope you all have a good weekend.
Find a bit of joy in the world. Share it. If you can’t find it, create it…
June 4th, 2013 §
I just want to see my son play baseball,
Watch him wave at me when he’s on base.
I just want to take my daughter shopping for makeup,
Applying powder to her porcelain skin.
I just want to read with my youngest one,
Snuggled up in bed together turning pages of a book.
I just want to grow old with my husband,
Continue to share our lives as we have for twenty-two years already now.
I just want to sit in the garden when we are old.
I just want to talk about the good old days.
I don’t want to read about mTOR inhibitors or side effects or months of disease-free progression.
I want to read beach fluff and skim through cheesy magazines.
I want to get a pedicure and have a nap in the chair.
I want choosing the color of my nail polish to be the toughest decision I have to make for a day.
I don’t want to read reports from the ASCO conference or tweets about new research findings.
I just want it to go away.
But it can’t.
I will never know another day of my life without metastatic cancer or chemo or treatment or dread.
But I will search for joy.
I will do what I can every day to find that joy,
And if I can’t find it I will make it.
This is my pledge,
This is my promise.
Some days it is hard to do.
Some days fear and sadness are too much.
Some days I do not know how I will do this with grace,
But I will try.
I must make the most of this time:
Helping others, educating, writing.
I know no other way to do this.
But it’s the hardest thing to do.
I cry, I give in to the emotions, but only for a few minutes.
No good can come from that.
I gather strength.
I go on living.
The bad days will come someday.
But that day is not today.
That time is not now.
And so I am a parent, a wife, a friend, a sister, a daughter, a writer, and everything else I have been until now.
That is who I am.
That is who I will continue to be.
For as long as I possibly can.
May 31st, 2013 §
This afternoon I will attend my youngest child’s Field Day. It will be a steamy 93 degrees here and I will join parents as we stand around and chat while we clap for our children and hug their sweaty bodies and remind them to drink lots of water.
It is always in these group events that so many of us feel like outsiders. It is often when surrounded by many people we are most aware of being alone. For me, this has never been more true than during the past 8 months since my diagnosis with stage IV breast cancer.
I return again and again to the desire to escape, the need to flee, the pull toward being somewhere else. The refrain in the new song I am co-writing with Doug Allen is about this need we all have, regardless of the cause, to take moments during the day where we just “check out” for a bit. It says:
I take a trip inside my head,
I don’t know where I go.
Far from things I know.
There are days when I want to be the ostrich, when I just am so overwhelmed with things that I can’t be on social media, returning emails, or even talking. I just am still. I notice that I rarely read anymore, even television can’t capture my attention. I sit in silence a lot, and when I have the opportunity I write or work on the songs.
I take those trips inside my head.
The pull of educating and informing is too strong to allow me to stay hidden away, though. Social gravity pulls me back. Sharing and documenting fuel me. I take my anger, my sadness, and my grief and I send them out into the world in constructive words and deeds. I can feel powerless and without control in many ways about what is happening to me but I always feel that I can control my reaction to these things. This is my lesson to the people in my life.
There is a scene in the film Children of a Lesser God where William Hurt’s character jumps into a pool to try to experience utter silence the way that his deaf girlfriend does. He wants to know what that feels like. He quickly realizes, however, that this won’t work. He knows when he rises to the surface he will once again hear sound. He can’t live what she lives. He can’t share her loss in that way.
Antoine de Saint-Exupery wrote, “It is such a secret place, the land of tears.” Most mornings I stand in the shower for a while longer than I need to. I listen to the water, I think about the day, I am grateful to have another. I know I will have more days. For those few minutes I take a trip inside my head. I gather my strength, I focus on the work to be done.
I turn off the water, I step out of the enclosure, and I rejoin the world of the living. That’s what I am doing every day: living with metastatic cancer.
May 27th, 2013 §
Today is Memorial Day. Each year my letter to troops stationed overseas is similar. Each year I question whether I should write something new, if it’s “cheating” to say the same thing. In the end I realize that thank you never gets old, it never needs to be re-written. Thank you doesn’t have an expiration date.
This year we went to buy items for the care package drive sponsored by the Darien Little League. Volunteers collect supplies including toiletries, non-perishable food, and games and send them to soldiers far from home.
My letters always have the same theme: bravery– chance or choice? I don’t know if the soldiers find my musing on this distinction weird in a letter, but they must ponder the topic of bravery as often as I do.
May 27, 2013
My family and I are sending you some supplies on this Memorial Day Weekend. We want you to know that we have not forgotten you or the sacrifice you are making every day to be away from your own families and in harm’s way. It’s not much, but perhaps knowing you are in our hearts and minds will help.
Six years ago I was diagnosed with breast cancer. I was in remission for more than five years and now my cancer has metastasized to my bones and lymph nodes. It’s not curable. As I go through treatment, people called me brave. I don’t think I deserve it. “Brave” is not a word you used about someone like me. I have gotten cancer by chance and I am dealing with it, the best I can.
But soldiers? You are brave. You have a choice—you put your lives on the line after making a conscious decision to do so. You know the danger and you do it anyway. To me, that is true bravery, true heroism.
Seeing danger and making the choice to proceed anyway is precisely how I define bravery. We all find ways to deal with the fear of death. We know the uncertainty that lies ahead. We see the bravery in others before we will see it in ourselves.
What underlies bravery: chance or choice? Can both?
Are we just hesitant to see the quality in ourselves? Are we just modest? Do we just act the way we need to, to get the job done?
I think when you choose to throw your hat in the ring, that choice counts for something.
That makes you brave.
That’s what makes soldiers heroes.
Happy Memorial Day to you. And thank you for your continued service to our country.
Lisa Bonchek Adams
May 24th, 2013 §
It’s Friday! I want to put a post up today because I know it’s been a while and people worry when I am not making posts. All is fine, it’s been a very busy week with a lot of routine medical appointments. Side effects from the new chemo are starting in and phrases like “mouth sores”, “high cholesterol,” and “follicular head pustules” make me certain that the person who called it “crazy, sexy cancer” was delusional about what cancer really is. There’s a lot that’s crazy but I don’t personally find a lot of sexy in it.
I’m getting help from my team in dealing with all of the side effects and have more appointments with more specialists in the next few weeks. For now things are stable and the next two weeks will proceed as planned. I’m still on Aromasin (25 mg/day) and Afinitor (7.5 mg/day). It’s the Afinitor that’s kicking in with my various problems. My tumor markers have shown a response to this combo over the last 6 weeks so we continue with it for now. I also received my monthly injection of Xgeva to strengthen my bones.
I wish you all a good Memorial Day weekend, especially our military personnel and their families.
The photo above is from 2002 by the way… where have eleven years gone?
I also want to mention that my last post, “There’s No Room for That in This (Six Minutes)” is the foundation for what is now a song titled “Six Minutes.” Over the past few weeks musician Doug Allen and I have been working hard on it and we’re almost done. I wrote the lyrics and he found the perfect music to bring those words to life. We are both so proud of the song and will be sharing in the future. His latest CD is available now and I just love it; it has two songs that have been on movie soundtracks… who knows where “Six Minutes” might land! More to come on this project.
I get a lot of emails and comments with questions about cancer and how to help those who have it. Let me say clearly that I never think I speak for everyone with cancer. I do believe that asking questions is good, and even if you don’t think my answer is right for you, at least you might look at the issue a different way and clarify your own thoughts.
If people like this format I may continue to post letters/responses more often. I have often thought we need a grief/loss/illness etiquette column and I’ll gladly do my best to help.
This week I received the following excellent question.
I’m a 31 yr old only child whose mother was just diagnosed with squamous cell carcinoma a week ago.
I’m going home for the first time (parents in WI, I’m in IL) since the diagnosis and after reading this blog, I’m not sure what I should say to her. She is a pessimist by nature and already saying she would refuse chemo (the details of her condition and treatment plan are still in the works) so my dad and I need to figure out a way to keep her positive so she can indeed have the support she needs to fight it. I bought some colored paper and was going to list “reasons why you are a fighter” as well as post some motivational sayings/quotes on their bathroom mirrors, but the ones that came to mind now seem like the ones you SHOULDN’T say “you can do this,”,”stay strong,”
Do you have any suggestions on what I could write? Please keep us in your prayers, I am obviously terrified of the road to come.
A few quick thoughts for you, J. I am so sorry about your mom’s diagnosis.
My first thought is that you all need time to adjust to the news. The way you react initially is not always the way you feel once you get your feet back under you. She needs a bit of time to not only adjust to the news but also to make this treatment plan. She doesn’t even know yet what she will be potentially recommended for treatment and yet you are expressing desires to coach her on how to feel.
Being supportive does not necessarily mean keeping her spirits “up.” Maybe what she needs right now is support for how she actually feels, not pressure to be acting a certain way. The best way to support her is to listen to her, and not try to tell her how she should feel. Let her adjust. And most importantly, respect whatever she chooses.
We love our families more than anything, but it’s her choice to make how she wants to live her life and how she wants to treat her cancer. It’s enough to deal with these diagnoses without feeling you are carrying the emotional burden of your loved ones on your back too. It will mean that she will know everyone rises and falls on her actions. That’s a huge weight above and beyond the physical and emotional toll she will be going through.
One of the most important things to do is to ask her how she thinks you could help her the most. I have a feeling putting up signs is not it, especially if you say she is a pessimist by nature. Signs around the house won’t change her attitude if a lifetime of experiences haven’t. Loving her, spending time with her, helping her with things that she might have trouble doing… those might be better. The key is to ask, really listen, and then respect what she says. Her needs might change (doesn’t want or need help now but needs it in the future) so you have to ask again during treatment.
If she decides to refuse chemo it will be tough, but it’s her choice. Chemo is very hard and is a quality of life issue too. Depending on what they are recommending and what the ultimate details of prognosis are, it’s important to respect what she opts to do while still encouraging her to see the benefits (as described by her doctor).
Those of us with cancer know everyone wants us to be “strong” and “positive” but it’s what we need to hear the least. It’s not like we haven’t thought of that already; it often just makes us feel like people are telling us how we should act because it makes it better for them if we act that way.
Negative emotions are normal with cancer, especially only one week after diagnosis… how could they not be? Not feeling free to express them may just be one more way she feels burdened by this disease right now.
Clearly you love her and want to help. The fact you are concerned with the best way to support her shows wonderful affection. The best way to do that right now, so soon after diagnosis, is to ask, and then respect what she says… That’s my best advice right now.
She will need time, but ultimately I think that she will be grateful for being allowed to express her emotions both negative and positive. I wish you all the best. Please keep us posted.
May 15th, 2013 §
I find myself in silence a lot,
Tuning out the noise.
No room for anything but thoughts.
I try to forget for a few minutes,
I stare at a spot on the wall.
I lose myself.
No clue how long it has been.
The clock says it’s been six minutes,
I am glad that they’ve gone by.
But then I realize I have wasted them:
Six minutes of my life.
I want them back,
Feel I should use them for something better,
I am mad at myself:
That was a waste of time.
I want days of suffering to pass,
But I also know that this is the only time I have.
I take a trip inside my head
I don’t know where I go.
Far away from here.
If you’d let me, I would run away,
I would go find a way
To keep you safe from this,
Safely far from this.
Some days I long to tell you how I truly feel,
But there’s no room for that in this,
No room for that in this.
It is not a choice.
That I know.
And when I finally do go
It won’t be for lack of want, or heart, or strength.
When I die it will be because that is what cancer is,
This is what cancer does.
And when it comes to being fair,
There is no room for that in this,
No room for that in this.
May 10th, 2013 §
My mother, Dr. Rita Bonchek, is a psychologist who specializes in grief and loss. A career discussing death and dying, however, was insufficient preparation for hearing the words, “Mom, I have metastatic breast cancer.”
Mom and I have reacted very differently to the news of my stage IV cancer. I was online within days writing posts about the steps I was taking. I wrote immediately about how to help children in the days following a diagnosis like mine. As my readers know, I’m very open about this part of my life.
My mother, on the other hand, is much more private. She would never write a blog the way I do. She didn’t want to share this news with people; she wasn’t ready to talk about it. I respect her decision but that approach doesn’t work for me. Sometimes our different ways of thinking lead to disagreements. Despite our differences we always support each other.
I thought it might be helpful for readers to hear what she has to say about reading my posts. Some of us with cancer choose to be very public with our daily lives but our parents are often forgotten in the discussion. I think the timing of Mother’s Day weekend is perfect to share this piece. I love you, Mom (photo at left: 1970).
I am Lisa’s proud mother and I have followed her blog from its first day. As her mother, I read her blog from a unique point of view, and I want to share my perspective with you.
Those of you who are reading this blog follow Lisa and her incredible writing. It is her understanding of human behavior, her expression of feelings of her heart and thoughts of her mind that make so many people want another blog from her as soon as the one being read is finished.
Yet, as the mother of this outstanding-in-all-aspects daughter, my reading of Lisa’s blogposts is complicated because each piece contains an extra layer of heart-wrenching pain for me. Lisa’s blog is a precious sharing of her everyday life, of medical explanation and analysis of each and every test result, of measured consideration of her hopes, fears, etc. Parents rarely get the opportunity to get “up close and personal” to this extent with a child. As Lisa’s mother, knowing her innermost thoughts is a gift and a curse.
If you (or anyone else but Lisa) were writing about a life journey with a cancer diagnosis, I could handle reading about the physical assaults on your body and the emotional assaults on your psyche because I would be more objective and not involved in your everyday life. I could read your blog, feel empathy and sorrow for the diagnosis, but step away from it. However, I am enmeshed in Lisa’s writing.
Lisa’s father stopped having the blogposts sent directly to his e-mail because he was often caught unaware with heavy emotional subject matter arriving at inappropriate times. He now accesses the blogposts only when he feels emotionally prepared for whatever he may find.
While this would also be a very reasonable decision for me to make, I have the ambivalent feelings of wanting to be close and share every moment of what Lisa thinks and feels at that moment versus retreating from the declarations of how her life is now and her fears for the future for her and the family – her family and my family.
Lisa and I share the personality trait of always wanting to know the truth so we are as well prepared for the worst as we can be. Lisa and I promised each other that we would never withhold any information to protect each other. The honesty Lisa promised me is the honesty she has promised to all of you, her readers.
On one level, her blog reveals to me everything I want to know, but on another level what I unconsciously don’t want to know. This emotional see-saw of wanting to read it but not wanting to read it is a decision that I must make each time a new blog-post appears in my inbox.
Why is this “to know or not to know” decision so difficult for me? When I read Lisa’s writings, I imagine the sub-text that she does not reveal: how she is managing to keep her family’s lives as “normal” (whatever that means) as possible.
Lisa is, as most mothers are, the hub of her family’s life. When Lisa writes in a blog-post that she was very tired and rested for hours, I know that her closed bedroom door makes every family member who sees that closed door go into overdrive with founded or unfounded concern and fear.
Lisa and I share the goals to make the most of each day and to cherish and to love one another. These are life affirmations within our control when so much of life is out of our control. Share our goals as you and I, Lisa’s readers, benefit from Lisa’s greatest gift to us: who she is and how she lives her life, in sickness and in health.
May 2nd, 2013 §
I have my father’s walk,
A slow, deliberate, long-gaited stride.
I have my mother’s smile, her voice, compassion.
I can’t yet see myself in my children,
I wonder if it is always that way.
I remember as a teen the day I actually could match my father stride-for-stride,
My smaller feet dwarfed by his size 13 shoes.
I remember thinking I was a grownup then.
I was wrong, of course.
I had no clue what being an adult was.
Yes, I did.
I yearn to go back to those days,
Perhaps I was not carefree but I was taken care of.
Knowing my parents were in charge,
I felt safe, protected.
Now I am a parent in charge,
I must be ready.
My children try to match my steps, still unable to.
I yearn for the day they can.
I hope I will be beside them when they are old enough to mirror my stride.
Not just beside them in spirit.
That’s not enough.
I want more.
When they think they are grownups
I want to be there too.
April 28th, 2013 §
It is easy to be happy when you are healthy.
It is harder to know that this may not be true much longer.
People love to casually say,
“Enjoy every moment” or
“We all die some day anyway” or
“Life is fleeting.”
I know this already.
And I know it in a different way.
I don’t need to be told to
fight the good fight to beat it
or the key is to just stay strong
or that it’s mind over matter
or that I should pray for a miracle
or that I will be cured.
Scientifically impossible in my case.
And so, when you say,
“No, that can’t be true.
There must be something that will cure you,
If you want it/pray for it/think it will be so,
You can be healed,”
What you do is force me to assert my knowledge,
Insist upon my diagnosis,
Explain the desperate nature of my disease,
Spend my time defending my sentence.
I know it’s what you wish.
I know you insist because you want it to be the case.
I know you’re grasping at straws,
Wanting to reassure yourself that bad things won’t happen to you,
That bad things don’t happen to good people,
That something awful won’t happen to me.
Trust me, I wish for it too.
But these things do happen.
It has happened to me.
The truth is that wishes don’t count for anything when you’re placing them against cell biology.
I know many healthy people who say the passage of time is bittersweet.
It isn’t a competition but I can tell you that this passage of time is different.
If you could feel it for just a moment you would know.
There is a difference between
I have learned that being nervous about test results,
are not the same as the reality.
Reality is having your oncologist walk in the room
and when you say to him, “How are you?”
and he says, “Not good,”
you naïvely think it must be a problem with him,
or his family and
instead he ducks his head,
takes a breath,
looks at you, and says,
“Your test results were not good.
Your tumor markers are up.”
He knows I know what this means.
He waits for a moment and says,
“I think you have a metastasis.”
A few minutes later he says,
“You need to go get a chest x-ray right now.
Go across the street,
I will come over to the hospital and look at it immediately.
Wait for me there.
Then you need to schedule a PET scan as soon as possible.
Have you had any other unusual pain?
A cough perhaps?”
The room spins, the world stops.
My life didn’t end in that moment, but life as I knew it ended for sure.
No turning back.
Reeling, processing, shock.
All you can do is let your jaw drop,
the tears fall,
your body shake,
as I looked at him
in a way that I never had in the six years he had been my doctor,
the only words that came to my lips in response
were to repeat over
“Fuck. Fuck. Fuck. Fuck.”
Because that’s the only word that could capture how angry
I never have liked the term “to expire” rather than “to die.”
I started thinking about these words though.
We all have an expiration date.
I’ve never thought of it like that before.
We all have one.
It is as if I’ve grabbed a carton of milk without looking.
I took the one in front I guess,
The one with the rapidly approaching date they put conveniently at the shelf’s edge for people to grab when they’re not paying attention.
Except I did pay attention.
I was always paying attention.
No one was more vigilant than I.
I want to put this carton back,
I want to say it’s not mine.
I want to scream it.
This must be for someone else.
The date is too soon but I can’t trade it in for a new one.
The problem is
I don’t know exactly what the date says.
April 21st, 2013 §
The response to my last post Floating Away was truly overwhelming. Thank you for your responses, comments, and emails last week.
I wrote three pieces while I was in Florida. I was planning to take time off from writing, to focus on the trip, the family time together, the joy. And I did. For most of it. The truth of the matter is that even joy right now is twinged with sadness. The writing I did was on my phone and was explosive and emotional.
That’s just the way it is. What I’m doing is grieving.
It’s been six months since the diagnosis of metastatic cancer. I’ve already run through one chemo regimen, wrung its effectiveness dry, and now have had to move on to something else. It will be at least one month before we know if it is working. There is no way to know if it will, and if it does, for how long. I’ll then be leapfrogging on to the next thing.
The loss of control is hard. It eats at me. I always wanted to believe that if I played by the rules, took the most aggressive route I could with my cancer the first time (more than 6 years ago), that I’d at least be NED for a decade or two. I was told my chance of recurrence was in the single digits. But cancer doesn’t listen to statistics– good or bad. The features of each person’s cancer are different. How aggressive it is, its resistance to certain treatments, its mutations.
I am not a risk-taker by most definitions of risk. I always felt that playing it safe would somehow benefit me.
I have come to believe that what I did actually did matter. I have come to believe it’s that not that it didn’t work. My surgeries, chemo, prophylacic oophorectomy… maybe, just maybe, those things bought me a few years. It’s possible I’d be dead already if I hadn’t done them.
I digress. But I want to reiterate that just because I am writing heavy pieces here, this isn’t the way you will find me if you see me in my daily life. There is joy, happiness, living. Please know that. I’ve always explored the darker emotions, the harder subjects.
Perhaps I feel the written land of the upbeat is for others. My niche is here, in the agony of this disease. There is so much emphasis on “being positive” and all of that; I feel the compulsion to show the flip side, too. I do not want to show the nitty gritty details of what the cancer is doing to me, what my side effects are, what appointments I go to; while important, they are a laundry list. Instead I choose to do what I have been doing all along here: writing my way through the forest of my emotions.
Sometimes as I’m drifting off to sleep I make a sound.
A sudden hmmmmm or a series of loud breaths.
If my child did this as I watched her sleep I’d furrow my brow,
stroke her hair,
pull up the blanket and tuck it under her chin.
But who will do that for me today?
I push them away, it is not time yet.
I do not yet need to be cared for like that.
And yet, I know it will come.
I must fight these demons.
I brave the fear.
I agonize with the decisions.
I push harder than I should.
They are watching.
Always watching for a chink in the armor, a sign of weakness.
No one else can truly understand what each of us with this disease must balance.
Even those of us who have chosen to publicly share our lives with cancer still manage to keep much of it to ourselves.
I must balance privacy and pain and catharsis.
Many people say they still can’t believe my stage 4 diagnosis.
That denial is a luxury afforded to those who are not compelled to live it.
You must believe it.
We must believe it.
I must believe it.
I have no choice.
It’s my life now.
It’s my death someday.
That noise I make as I fall asleep?
It is the sound of startled agony.
April 18th, 2013 §
I sit on the beach, feel the sand’s angry texture rub my chemo feet in a way I wish it wouldn’t.
I watch my family in the ocean, turquoise and calm and vast.
My husband flips over, face in the water, takes some strokes out to sea. His movement is graceful, effortless, just as it was the when I met him 22 years ago.
He was a sprinter on the college team then, and while he laughs and says it doesn’t feel effortless anymore, nor perhaps fast, it does not matter. In my mind’s eye he is that young man, swimming fast, joking with his team, coming over to the stands to talk to me while chewing on the strap of his racing goggles. I fall in love with him again every time I see him swim.
My three children float, bobbing in the ocean water.
I can feel the distance between us, it feels like a lifetime.
It is my family in the ocean floating away from me.
I see the quartet, I watch as an outsider.
I do this a lot lately. I watch them from afar and think how it will be without me. A new family unit. Behind the big black sunglasses my tears stream down.
Suddenly Tristan is running from the water to me, across the sand. He stands, dripping, face beaming. “I just wanted to tell you I love you, Mama.” I take his picture. I capture the sweetness. I grab him, hug him, feeling the cold ocean water on him, melding it to my hot skin. I murmur to him what a sweet boy he is, that he must never lose that. I send him back to the ocean, away, so I can cry harder.
By the time they return to shore I’ll have myself composed. But my oldest immediately senses something amiss. She mouths to me, “Are you okay?” And pantomimes tears rolling down her cheeks.
Yes, I nod.
I walk to the water’s edge to prove it.
April 12th, 2013 §
I want to just send out a quick clarification about my chemo because I can tell from messages I’m getting that I didn’t explain well what has happened with my discontinuation of Xeloda. This particular chemo is now failing, yes. But that doesn’t mean it didn’t work. This is part of this disease of metastatic breast cancer. In some cases the treatment option never works; that is, your cancer doesn’t respond at all. You get no benefit from day one. You abandon it quickly.
Mine, however, falls into the other camp: it did work for a period of time. It did what it was supposed to, just for not as long as we’d hoped. That is, it did reduce the amount of cancer in my body for a while, it did hold progression at bay.
It’s no longer doing that, my counts are very slowly rising, but that doesn’t mean it “didn’t work.” It just means it didn’t work for as long as I would have liked.
Most people with advanced disease will be leapfrogging around all sorts of agents (chemo, anti-hormonals, etc.) to try to see what works. The cancer mutates and becomes resistant to most treatments that will get used. That’s when it’s time to move on to a different one. I know people that have been on at least ten different agents. That leapfrogging is just the nature of the path many others and I are on. A small percentage find one that works and it continues to work for a long, long time. Research is needed to find out why these particular cancers are more easily tamed. We do not know now why that is the case but researchers are learning more and more about the subtypes.
So while the stability was not as long as we’d liked, in this particular case it doesn’t mean it didn’t work. It did. For six months. But now we’re moving on.
In my case, because my cancer is estrogen-receptor positive, we’re trying anti-hormonal agents. Although I don’t have ovaries to produce estrogen, the fat cells and adrenal glands in my body still produce estrogen. I will be taking two drugs every day now, Aromasin and Afinitor. The plan is in place and I’m already starting taking them, slowly on the Afinitor because it has a side effect of bad mouth sores if started at a full dose. I won’t go into other side effects here because I don’t know yet what my particular response will be.
Thanks for all of the notes of support and concern over the last 48 hours during the PET scan and this new adjustment. As always, I can’t respond to every message but I do appreciate them all.
April 11th, 2013 §
A quick update. I’m sorry to say that my hand-wringing and concern in my last post were met with unfavorable results yesterday. My tumor markers were again slightly higher. In and of itself (an isolated rise) it would be acceptable. But this has been a trend for long enough that it’s evidence my current chemo has failed. Goodbye Xeloda. I’m sorry to see you go. I’d hoped for longer than six months on it for sure.
I’ve got a PET scan early this morning (Thursday). It is being used as much to see how much progression there is as to be used as a baseline before starting the next treatment.
I’m still talking with my oncologists about what the next treatment should be (options include oral anti-hormonals and various IV chemotherapies). Whatever I choose will be ripe with new side effects and demand monitoring. My hands will improve; much as I am happy about that, I am truly sorry to see the Xeloda go. I think you always want to hope that the first thing you throw at this disease will keep you stable for longer than this. But, the Xeloda did good work for six months. But we knew this day would come: on to the next.
I am glad there are still things to try. But of course, for now, I’m sad.
I’m still grieving and angry and all of those emotions. But I’m also learning new skills of compartmentalization and recovery. I move forward, I move on, I live. There is no choice. I change treatments and see what I can get from it. My life has become a puzzle shifting pieces; we move and mix them around until they fit. That fit won’t last, but hopefully it lasts for a while.
Do not be concerned if you don’t see a post for a bit. I’m going into research and decision-making mode. I appreciate all of the support from everyone. I know that if hopes and wishes and hugs could cure my cancer I’d be healthy for sure. I can’t acknowledge all of the messages right now and even the thank you notes for Tristan’s birthday party are sitting half-done. For now this is what I am focusing on and being every bit the mom and wife that I can be at every other moment.
April 9th, 2013 §
In the still of the evening I hear the frogs waking up to Spring.
I hear the creak of the floor as my daughter walks around her room,
Sets things just so,
Murmurs to our dog.
In the still of the evening I hear a car,
A neighbor calling his own dog home for the night.
In the still of the evening my mind wanders again.
I finished my 13th round of chemo 48 hours ago.
I wonder what is going on inside my body.
I wish I could see.
I wish I knew.
Is it working?
Is this round the one that will show evidence of chemo failure?
Will I move on to a new treatment?
One step closer to the end?
Every time I bang against something,
Every time I feel a twinge,
Every time that fractured bone aches,
The pauses add up to moments.
The moments add up to minutes.
I reel them back in like fishing line, I show them who’s boss.
Just listen, I say.
Listen to the frogs. The creaks. The murmuring. The train.
Just hear the quiet,
Hear the house going to sleep for the night.
Feel the love.
Be grateful you can.
April 5th, 2013 §
For those who wanted to hear my interview on Doctor Radio and weren’t able to listen on Wednesday, here is a link to a downloadable audio file of the one hour show. Thanks to my brother, Mark, for doing this. That show leads directly into today’s discussion.
I always get some heat about posting essays about the stupid things people say to those with cancer.
I know people come here expecting to learn. That’s what I’m trying to do: educate. People inevitably vary in their responses to what people say. After all, responses to books, movies, and comedians are all over the place.
Occasionally people will get defensive and say, “Well, I have said one of those ‘stupid’ things and I meant well.” I am going to take an unpopular stance and say that meaning well isn’t always enough.
Maybe the listener is scared. Maybe they’ve had cancer or a family member with it. Maybe they are just uncomfortable talking about illness and death. It’s important to remember: it’s not about you. It’s about the person with the illness. If you are a friend you will need to get over your discomfort or get out of the way. What you don’t want is for the ill person to have to be consoling the listener or trying to minimize the seriousness of what they’re feeling.
Do not turn it back on you, or when you had cancer, or when your child or mother or 2nd grade teacher did. It’s not necessarily the same. Types of cancer are not the same. Even subtypes of cancer are not the same. Now, I’m not saying you should always avoid interjecting something to let the other person know that you’ve had experience with cancer. But the first thing out of your mouth shouldn’t be to connect it to someone else and what their outcome was, good or bad.
Different diseases cannot be compared. Different cases of the same disease cannot necessarily be compared, either. Chiming in with, “Oh, my second cousin’s boyfriend’s dog walker had breast cancer” doesn’t help a person, especially if it’s followed by “She suffered in pain for a long time and died” (yes, this gets said more often than you can imagine). The other end of the spectrum is, “Oh I know someone who had that. They’re fine now.” (Okay, but some people are not fine… should they be jealous? Feel inadequate?) Someone told me in response to learning I had metastatic breast cancer that his wife “had a bit of that last year.”
If you had a coworker who worked the entire time she had treatment, that’s great. We are happy for her, truly. But that bears no relation to how someone else can handle their surgeries, treatments, and side effects. So while you might think it’s supportive (in your mind you’re saying, “See, I’m being supportive and reassuring her that it might not be as bad as she thinks”) what that person may reasonably hear is, “Wow, if you have to take time off work you are weak, or at least not as strong as my coworker was.”
What would be something better to say to a coworker? How about “Please tell me how I can help you during this time. Is there something at work I can do to make it easier for you? I hope you know I would like to help if I can. If you can’t think of anything now, that’s okay. Just let me know if/when you do. I’ll ask again to make sure you’re getting the help you might need.”
Asking “Has this been a good week or bad week for you?” seems like a good bet to ask someone you might not be best friends with. It shows concern and they can be as detailed as they want in their response.
A few weeks ago someone tweeted to me, “As a cancer survivor myself, I know that half the battle is the mindset. Be determined to defeat cancer and you will!” Then followed that one up with “I meant that if we believe we can win against it, we will.”
Comments about someone’s attitude are definite don’ts. Does that mean those who die every day are responsible for their deaths because they are weak-minded? If it were as easy to defeat cancer as mindset, people would not die of it by the thousands every day.
Similarly, comments about appearance while rampant, can strike the wrong chord. I can’t tell you how many times people find out about my stage 4 diagnosis and say, “But you LOOK just fine!” The two are not always correlated, most especially at the time of diagnosis. This is why many people don’t know they have cancer and are completely taken by surprise. When people tell me “You look great!” I know they mean something nice by it. But the rest of that comment, the dark underbelly, is “You don’t look like you’re dying” or in some ways more insidious, “If you look that good you can’t possibly be that sick/it can’t be that serious.”
Don’t say you know exactly how someone feels if you don’t have evidence to back that up. Being a compassionate person and caring friend does not require personal experience that is identical to what the person is going through. Let me say that again, a different way: in my opinion you don’t need to have had cancer to be a caring friend. It might help you to be a good friend if you have had cancer, but it’s no guarantee. People “do” cancer differently. While the experience does make us members of the club, it doesn’t mean we will necessarily agree on how to deal with it. Part of what I try to do here is level the playing field. I try to bring you information and advice you can use so that you will know more about helping than you did before.
Don’t tell them that their science-based treatments are bunk and what they really need to be doing is just changing their diet, breathing pure oxygen, or relieving their constipation to be cured of cancer. Do not tell someone who is in the middle of treatment that chemotherapy is a waste of time. You may think your suggestions of supplements/vitamins/tea are harmless, however, there are serious interactions that can dull the effectiveness of chemotherapy and other treatments. Not all lotions are good to use during radiation treatment. Not all vitamins are good additions.
I like what @travisbhartwell tweeted to me: “Mindset changes the days you have, not the number of days you have.”
The worst thing that can happen is that friends disappear. This is happening to me in spades. It may be that they are afraid they’ll say the “wrong” thing and end up being written about. But I think it also has to do with the fact that death and illness make people uncomfortable. I represent their fears. People who should be in touch with me at least every week or two (because that is how often we saw each other before) have just dropped away.
That said, there are so many people in my life who are so wonderful. Who offer to help, who make it easy to accept it. Who send notes or emails of support months after the initial shock. Who keep asking what they can do. Who pointedly give ways they can help and ask if I could use it.
One thing I think is very important is to always say to someone who is ill or has experienced a death in the family: do not write me a thank you note for this. Do not feel the need to answer this email. Do not feel the need to call me back.
If you live near the person ask them, “Would it be helpful if I texted you before I run errands so that I can pick something up for you?” Texting and email help because talking on the phone is almost always too much of an ordeal and/or inconvenient. I have friends who email me at the beginning of the week to say, “I’ll be at the grocery store, the drugstore, and the post office this week. Can I do anything there for you?” Some will text on the spur of the moment, “Running to Costco. Need anything?” These are invaluable offers.
If you have no knowledge of what information you are being told, admit it. People with serious illnesses do not expect you to know everything about their new diagnosis. They are probably learning a lot of information in a short period of time and may not even know the details of their diagnosis and treatment. They don’t expect you to have the knowledge but you need a way to connect. I recommend when someone tells you about a diagnosis you don’t know much/anything about you say, “I don’t know anything about what that diagnosis means. Would you mind telling me about it, and what it means for you?”
How is it impacting your day-to-day life and what part of that can I help you with?
I’m so sorry to hear that.
What is the worst part of this for you and how can I help make that a bit easier for you?
If your friend is dying or has a relative who is, and they refer to the death or how difficult treatment/daily life is, don’t brush it off, dismiss it, or say, “Oh, you’re not going to die. You’ll be fine. It will all be okay. Things will work out.” Saying this to someone with stage 4 cancer comes across as dismissive of the seriousness of their diagnosis.
If the listener says, “Oh, that’s depressing, let’s not talk about dying,” it can isolate the person who is ill, making them feel they should not be thinking about what is a very real concern or outcome. As Julie Klam points out in her book Friendkeeping, acknowledging someone’s wishes should be paramount. She tells the story of her mother and her mother’s friend Patty who was dying of cancer. Patty wanted to give Julie’s mom a pendant. Rather than gratefully accepting it, Julie’s mom insisted Patty would wear it again, that she would get better. Instead, she died a few days later. Years later when recounting the story with regret, Julie’s mom said, “She knew she was dying. It probably would’ve been comforting to her for me to acknowledge that… I was just afraid that she had some small glimmer of hope. I just didn’t know.” I would bet that if that same scenario happened again, Julie’s mom would act differently.
Later in the chapter Julie recounts being a friend to someone who had to terminate a pregnancy. She asks Julie a question that continues to haunt me: “Will anything ever be good again?” It echoes in my mind now: Will anything ever be good again? Will anything ever be good again?
The truth of the matter is that for some it will. For some people, it won’t.
Check in with your friend intermittently. Give her reminders that she is not forgotten even if she is not out in public. I love getting cards or texts or emails that tell me what my friends are up to. As I write this my friend Kathleen texted me to say she was eating at one of our favorite places. “I miss your company” she said. How can you not love that?
I love written notes. I save my favorites. When I’m having a bad day there is something about pulling out a card, seeing handwriting, reading a message. It’s just more personal than seeing it on a screen. Of course texts and emails are great for frequent check-ins, but for a special message? Real paper can’t be beat.
Other winners to me are notes that remind me of a funny experience a friend and I had, a favorite memory. Many people know I love my garden and flowers. They will send me a pretty card and tell me what they saw at the farmer’s market or in their own garden or what they’re looking forward to about Spring. Sometimes they will tell me about being on vacation and how they thought of me when they saw the water or the tropical plants and they remembered a trip I’d blogged about.
Some send a favorite poem or story or memory. I like those. I don’t like religious quotations or cards that focus on people praying for me or hoping for a miracle. That assumes I am a religious person (I am not and I don’t believe in miracles). I think cards should focus on the person— the connection to that person, your friendship, not what types of religious comfort or explanation the writer endorses.
One Twitter friend, Neil Shurley, wrote me a song titled “We Love You, Lisa,” and then made a video with people holding up signs that say those same words. I still watch it. I always cry. It’s one of my favorite things anyone has ever done for me. This, from what most people would term a stranger. Another friend, Nichole, took photographs that people sent her, combined them with poems and sayings and turned them into a photo book for me. When I’m down it’s another thing I reach for to feel support.
Does the person who is ill have children? If so, you can do what one room mom did for me this year: For school events Lizzie always asked if I felt well enough to join on any party or field trip. She offered rides to school performances. When I could not attend, she (and other moms) took photos and videos and sent them to me… without being asked. My friend Zerlina put together a playdate calendar and a dozen moms signed up in rotation to have Tristan over three times a week for playdates for the past six months. This was especially helpful. Sometimes I’ve been well enough to say we would host the playdate here. But knowing there was fun built in with his friends was a relief to me.
Finally, I always love my mother’s suggestion for one of the best questions you can ask in any situation whether it be posed to a friend, a spouse, a child, a coworker. When someone comes to you with a complaint, a problem, or a rant asking the simple question, “Do you just want me to listen or do you want my advice?” is a wonderful way to be supportive. Sometimes a friend just needs to cry and vent, no advice wanted. By asking you will show sensitivity to the distinction. This is what I mean by not needing to have had the same experience to be a good friend. Listening matters. It’s free, and all you have to do is offer (and follow through).
And if you have a serious illness how do you respond when someone asks you how you are? If you don’t want to answer in detail, one suggestion is to say, “There are good days and bad days. Today is a … day.” This response is also a good one after the death of a loved one. If you are having a good day it allows you to acknowledge they’re not all like that. If you’re having a bad day it expresses that you know they won’t all be like that, either.
I think we all like to hear that we matter, that we make a difference, that we are loved. In the end, you can never go wrong by telling (or writing) someone what they mean to you, what you like about them, and what you enjoy most about being with them. This is the essence of friendship to me. Some days you need a serious chat. Some days you need a friend to be silly with. Some days you need a friend to go shopping and have a gossip session with and try to put cancer in the back seat for a few hours. There are many ways to be supportive.
My dear friend Cathy texts me every morning to wish me a good day and asks, “How can I help you today?” I most certainly don’t expect that every friend should do this. But boy, it means a lot that she does. I rarely need something these days. But I will someday. And when I do, I know she’ll be there for me.
I have so many people in my world who care. I know how fortunate I am. I hope that some of these suggestions will be helpful and I am sure you will find others as readers comment on the post. You don’t need to have many things to say… a few good options will do.
I hope you all have a good weekend, we are starting to feel Spring here and boy, does it feel good!
March 28th, 2013 §
Limboland is part of stage 4 cancer. On a daily basis I don’t know what’s happening inside my body. I often think about the cancer cells and wonder what they’re doing. Are they dying? Multiplying? It would be so nice to have a reliable blood test to easily and accurately measure how many of them there are at any given time. But these tests do not yet exist for us.
My CA 15-3 test again showed a slight elevation from two weeks ago. The numbers have been bouncing around over the last few months (expected) with a slight upward trend (undesirable). It’s hard to know what this means. A few points here and there are not cause for alarm. This volatibility is inherent in this test (which is why some oncologists don’t do this test at all, and why it can’t be used as a screening device. Also, in some people the test doesn’t reflect changes in the amount of cancer present at all). So… it’s a bit to me like trying to juggle Jello.
Of course I want to walk in and have my number be lower than the previous time. But that’s not always possible. With the exception of my hands I’ve felt good for the last two weeks. I’ve been in a frenzy of activity this week with Tristan’s 7th birthday this weekend (more about that in the next few days) and lots of activities with the kids. How I feel is important; while blood tests can show how my counts are, lack of pain in new areas is good too. I received my monthly injection of Xgeva today as well.
I’m back at Sloan Kettering next week and Dr. Dang and I will huddle and strategize. Today my local oncologist and I talked about some ideas about how to treat this test result and what it potentially really means. Right now it seems we are in watchful waiting (not that there is anything new about that). As of today no repeat PET scan is scheduled. We will see if that decision changes next week. My prediction is we wait two more weeks to see where the levels are then and re-evaluate at that time.
Chemo starts this Sunday. I’ve been doing the maximum recommended dose for 5 days, and a slight decreased dose for 2 days. I think this time I’ll be pushing to the maximum dose for all 7 days. It’s hard to know what price I’ll pay for doing so, especially during a very busy week next week (Sloan appointment and then another gig on the Doctor Radio Oncology Show on Wednesday at 1 PM which I hope to attend in person). My hands are my biggest issue, this is just what happens with Hand/Foot Syndrome. I continue to treat my hands with all sorts of products and care, but the truth of the matter is that this is what Xeloda does when it is taken and leaches out of the capillaries. The only true remedy is a decreased dose or discontinuing it altogether. That’s not in the cards right now (thankfully).
It is always hard to hear news that’s not what you want. I’m sure some people would be filled with anxiety and upset after this type of news. I like to give myself a ten minute pity party and then get on with life. If I give myself up to worry and dread for the next two weeks, what have I accomplished besides ruining two precious weeks of my life? Instead I went to the grocery store and stocked my house with food for the long weekend. I came home and played with my new dog (sweet Lucy is especially lovable in times like this).
I am a role model: my children are watching how I handle all of this. Raising polite and kind children is not enough. My children’s mastery of resilience is as important as any other life skill I can teach them. If I become debilitated by anxiety, don’t pick myself up and press forward, I am teaching them a lesson they do not need.
It’s okay to be emotional or upset at bad news. Complete denial serves no one. Acknowledging emotions of anger, sadness and fear but still displaying strength, stamina and persistence is what I try to do.
I hate the turn my life has taken. I hate that this is what is happening to my family and to me. For now, though, I continue to focus on all of the things I can do, and am doing. I pour my heart out on this screen. Some people think I must be depressed all of the time if I have these dark emotions evident in my posts. I can assure you that this is not what I am like all the time. Those feelings exist, and are important. I wouldn’t be human if I didn’t have them. It’s important to get them out not only for my own well-being but also because I know many readers with cancer tell me I’m speaking for them.
So, it’s not what I wanted, but I’m not sounding the alarms. We watch, we wait, we treat. I consciously do the best I can every day. Some days I do better than others. Some days I have a short temper and take my anger at cancer out on my husband or my kids. I’m not perfect. I apologize to them. I tell them I’m trying my best but sometimes it just breaks through. They see that I am human too. I make mistakes.
I draw strength from you all every day. Thank you for your support.
March 22nd, 2013 §
The moving truck has been in their driveway all day.
Six year old Tristan came sobbing to my bedroom a little while ago.
“The truck is in their driveway. My best friend is moving. I am so sad. I’m so very sad.”
I brought him into my bed and held him as he cried, hiccuping and shaking and hanging his head.
“I know you are sad,” I told him. “I’m sad they are leaving too.”
I told Tristan that he will still see Alex again before he leaves. He can write Alex a letter before he goes and we’ll be able to call him and even FaceTime him too.
I told Tristan I know it is hard when you have a friend leave you. I explained that what he is feeling means he loves Alex a lot.
I was crying too, tears running down my cheeks onto his shirt. I was crying for his pain over having a friend move away but I confess that’s not all I was crying about.
Tristan doesn’t fully understand why this hurts me so much.
I hurt because I can’t stand the thought of it…
I cannot help but wonder: if this is how he feels when a friend moves away, how will he cope when I go away forever?
I know my family will accept my death. There is no other way. But the fact I have to spend my days thinking about these things tears me apart.
I know the impact of the death of a parent is everlasting.
I know it is something you deal with but never get over.
I hate that I will do this to my children.
I hate that I cannot ever fully have this out of my mind.
I hate cancer.
But I love my family more.
Tristan, I’m doing everything I can to make that horrible day as far from now as I can. I don’t want to die and leave you, or Colin, or Paige, or Daddy, or Nana, or Grandpa, or Uncle Mark. I don’t want to leave my friends. I don’t want this life to end, and certainly not so soon.
But when that day happens and I do die, it is more than just about being what I want.
Not everything is in my control. If it were, we wouldn’t be where we are now. Trust me.
Wanting my life to be long, wishing for it, hoping for it… these things just aren’t enough.
Cell biology and tumor features and available treatments will have more to do with the length of the rest of my life than any wishes or hopes or dreams.
But I’ll still keep those wishes and hopes and dreams, sweetheart, because I won’t give up on you.
March 19th, 2013 §
Willing myself to recharge, gather strength, get ready, be stronger.
Chemo starts again.
One more week.
My relationship status with chemo on Facebook would read: It’s complicated.
Chemo keeps me alive.
Buys me time.
Gives me days, weeks, months.
Makes me sick.
Causes my hands and feet to numb, get tender, peel, redden, swell, ache, burn, throb.
Tires me, sickens me, weakens me.
How can I hate that which gives me hope?
I check in with friends on Twitter.
I see photos of beautiful people in watercolor places doing things I want to be doing.
I am jealous.
The light hits her hair so perfectly, magically, like a mermaid.
It makes me cry.
I literally weep at the beauty of a friend,
wishing I could be with her,
anywhere but here.
I had a dream of being at Sirenland.
I set a goal, but it has come and gone, unfulfilled.
I cannot decide if stage IV means I must downsize my dreams or shoot for the moon.
Is there nothing left to lose or simply nothing left?
It is late night in Positano now.
They have done their work for the day.
They have their late European dinner, their drinks, their views of the water shimmering at the base of the hill.
I was supposed to go on a trip there once, coincidentally.
A fifteen year anniversary present and celebration of finishing cancer surgeries and chemo six years ago.
Plans were made, everything was set.
Four days before planned departure, our (then) five year old son’s appendix ruptured.
Nine days of round the clock hospital bedside vigils followed.
No trip. No rebooking. No celebration.
But no regrets at being where our son needed us to be.
Wistful I remain.
Unsure I will see that place now.
I envy those who are there.
I wonder if they know.
How I envy them.
March 18th, 2013 §
Metastatic cancer is an introduction to topsy-turvy world.
Things I once counted down to now I must cheer.
The first time I was diagnosed with breast cancer (stage 2, in December of 2006), I counted my chemo treatments down. “Only 2 more adriamycin/cytoxans to go,” I might say, or “Only 4 Taxols left.”
Now I’m forced to be glad for the chemo rounds.
I started my 12th round of chemo yesterday, on Sunday the 17th. After being sick with a bad cold and stomach virus this week I’m feeling not-quite-ready to start again. I haven’t had enough time to rebound and my side effects are not as reduced as they traditionally have been. My feet and especially my hands are not in great shape and I’m limited as to things I can do. For a few days I had trouble walking. Some days I can’t hold a coffee mug. Most days buttoning and unbuttoning are a lengthy challenge. Typing is sometimes painful as well.
Whereas before I could look forward to the time when chemo would be over, now I must be happy for each round. I must realize that it means another week alive, another week the drugs are working.
Another week to be a wife, mother, friend, daughter.
Another week to write, another week to love.
Another week to hope there is a new treatment brewing.
My milestones used to be measured in how much time I had invested to get through to the other side: putting cancer in the back seat. The goal was successfully completing surgeries and chemo so cancer would be more like background noise rather than an attention-greedy headliner in the spotlight.
But now all of that is backwards. I don’t count down until my treatments are over because they are going to be here for the rest of my life. That’s a hard one to accept some days. There is no “when I’m done with treatment.” Not taking chemo would mean I’ve run out of options or the treatment is worse than the disease. There is no after. There is no “looking forward to being done.” Being done now only means death to me.
This is the way it is.
Everything is upside down.
And that’s how life has felt every day since I was diagnosed with Stage 4 breast cancer.
March 11th, 2013 §
When you’re in it
You can’t see your way out.
Some days the only thing that gets you through is thinking
All the days can’t be this bad.
They will get better.
But what happens when you reach the time when they won’t get better?
It does happen,
Each time you sink in the quicksand
You’re never sure if it’s the last time you’ll be able to get back up.
Pretend each time you will rise.
Just get through this spell.
Imagine it’s just another in a string of bad days
That will be followed by a good day,
That’s how you get through the days, weeks, months, years…
If you are lucky.
There is no option to me.
There is no alternative.
Up. Forward. Onward.
Even when it hurts.
On the outside.
On the inside.
March 7th, 2013 §
Everything changes with a diagnosis of Stage 4 cancer. I don’t really think that’s an overstatement. My relationship with my oncologists has, by nature, changed as well. With stage 4 one of the things that’s especially important is good communication between physician and patient. It always is, but now two of the topics that are imperative to review at each meeting are side effects of medications/chemo and symptoms I’m having (especially pain).
I have always had two oncologists’ input on my treatment since my original diagnosis of stage II breast cancer in December of 2006. Even through the more than five years of remission, I continued meeting with them about my adjuvant therapy.
Immediately after I was diagnosed in October with stage IV my oncologists began talking about finding a balance between length of life and quality of life. These two aspects of my life would have to be constantly juggled. The art of medicine and its role in treating cancer suddenly has become crystal clear while the science of decision-making often remains blurred.
For many people it is often reassuring to hear there is a plan, a prescribed protocol. There is a type of comfort in being diagnosed with a disease and being told there are defined steps you need to take. With metastatic cancer it’s not crystal clear. Patients must often help decide what is right for them.
I was offered options about which treatment to try first: a traditional chemo or an anti-hormonal combination. One would attack cancer cells, but also attack the healthy cells in my body. The other would aim to “starve” the cancer of some of its fuel (hormones). One important positive feature about my cancer is that there are choices about how to try to keep it in check. This hopefully will equate to having stable disease for a while so I can live longer. Some types of cancer do not respond to certain therapies and therefore there are fewer options in treating them.
When I went to see my medical oncologist at Sloan Kettering, this week she pulled the chair over and sat only inches from me. I was on the exam table, in the modest red and peach Seersucker bathrobe Sloan uses for their exam gowns. We sat and talked about research and trials and side effects and my blog and my family. She gets emotional sometimes when we talk about the current situation. So do I.
Then Dr. Chau Dang said something that I will always remember. She said that many doctors start to distance themselves from their patients as the patients get sicker and closer to death. She said this is their coping mechanism. Of course I couldn’t help but wonder if the same process is what is behind some of my friends disappearing and rarely contacting me anymore. Some physicians, she said, seem to back away, needing emotional distance not to be weakened each and every time a patient dies.
In contrast, my doctor feels this is precisely the time in her relationship with her patients to embrace them, bring them close, provide them care and comfort as much as possible. It’s important to remember, she always says, that this isn’t a case, this is a life. A person with friends and families who love them. Death happens for all of us. It’s her role to do what she can to prolong life, and when that can’t be done anymore, it’s important to still care for the person, not just treat the disease.
The nature of the doctor-patient relationship changes over the course of illness. Perhaps nowhere is that truer than in oncology. I’ve always been a partner in my care, it’s the only way I know how to be. It’s my life, after all, and the decisions we make as a team are ones I do not want to regret because I gave up control or didn’t have adequate information. However, I also accept that treating cancer is not an exact science.
Some patients do not want to have options. They want their physician to pick the course of treatment that seems best matched for the patient and proceed. A patient sometimes doesn’t want choices; he or she wants the doctor to do the sifting and prescribing. This works for many people, and takes the responsibility off the patient. There is mental comfort in that approach, too. I can understand why some people make that choice.
One of the things that is difficult in being a true participant in your own care is that while you get the satisfaction of partial control, you also must accept responsibility if/when things go wrong. This is part of the deal.
Some things just are.
Some things just happen, even when you do all you can.
I have accepted this jagged truth all along.
But I think some people never do.
March 5th, 2013 §
Today (Tuesday) I’ll be in New York City having my appointment with my oncologist at Sloan Kettering. I won’t be getting any test results and don’t anticipate making any major changes to my chemo regimen so I do not think there will be news to report. Of course I’ll post an update with any information I find out that might be helpful to others.
Because I have so many new readers I want to just make sure everyone knows that I do not necessarily post every day. A day (or a few days) without a post should not be interpreted as something medically severe. I have always felt it might be overload to be trying to get a post out daily; for now, about three a week seems right. Naturally, life gets in the way sometimes– that’s usually a good thing for me, of course. It’s life getting in the way. School events with my children, home repairs, and doctors’ appointments all can wreak havoc on a writer’s day as any writer will tell you!
I am still working on the post about things that are helpful to say/offer when someone tells you he/she has cancer. This post will take a while for me to work on. Bear with me; I’ll be posting other things in the interim, but that doesn’t mean I’ve forgotten.
I appreciate the support each and every day. Twitter is the best place to keep up with me if you want more daily info (@adamslisa) and there are also Facebook pages as well (one here and one here including the fabulous song/video “We Love You, Lisa” by Neil Shurley).
If you want to receive the blog by email it posts every day at about 11 A.M. EST. You can sign up by entering your email in the box in the upper right corner of the website home page, but be sure to open the first email you receive and confirm your request, otherwise it won’t activate.
March 4th, 2013 §
Once or twice a week I awaken in the middle of the night with a poem in my head. I reach for my phone and I type frantically. I go back in the morning, or after a few days, and read what I’ve written. I know the words are important, streaming from my head like water breaking through a dam. This poem came from one of these middle-of-the-night sessions.
If you let me
If you let me
I’ll cry you a river
Scream at the moon
Hold your hand
Kiss your mouth
Feel your heartbeat
Dream of more
Fear the end
Wish it were different
Pound my fists
Swear a blue streak.
If you let me
I’ll give you strength
Find a reason
Deliver some hope
Take a needle
Feel the pain.
If you let me
I’ll be grateful
Take a stand
Do my best.
In the end
I’ll whimper softly
Give a last kiss
Take a last breath
March 2nd, 2013 §
By now many of you have heard the news that my blog was chosen to be included in the New York Times Motherlode Blogroll. I’m so thrilled that editor KJ Dell’Antonia chose to share my writing with a wider audience. The original web announcement appears here, and the text appears below.
It’s exciting to see the readership grow. I’ve been busy reading the emails, tweets, and comments from readers who connect with what I’ve written. The notes of suppport and appeals to “keep doing what I’m doing” cheer me. When someone writes, “you’ve expressed what I’m feeling” or “I’m learning from you” I know that what I’m doing is right. I try to answer emails, even if it’s just a sentence or two, but sometimes I just cannot. Please know I read EVERY word you write to me, if I can’t respond individually all the time, I ask your forgiveness.
If you haven’t read my essay The mentor I never met about my own introduction to a blogger with cancer, please do. It’s one of the most important things I’ve written. It explores the connection between a reader and a blogger. I know there are thousands of you reading these words that don’t know me personally. But that doesn’t matter. I understand how reading a diary of the innermost thoughts of someone facing stage 4 cancer brings us together. My readers here and followers on Twitter understand me in a way that even my close friends cannot. It’s one reason I love social media. There is a connection that can be made (at least the way that I use social media).
I welcome new readers who’ve come here after seeing KJ’s announcement. I treasure the readers who have been with me, encouraging me from the start.
A bit of housekeeping before I turn you over to the Times profile: my bloodwork this week showed stable tumor marker (CA 15-3) numbers. This is good. Side effects from the chemo have varied from annoying/challenging/painful to quite tolerable. This is as much as I can hope for. I was able to spend a lot of time with my family this week and enjoyed being at school for conferences and a reading celebration of Dr. Seuss’s birthday.
I will continue with the dosing that I have done for the last two rounds (I’m on round 11). I take 27,000 mg (54 pills) of Xeloda over the course of a week and then have one week off. Before starting the next round I do bloodwork, make any adjustments to the dose based on tolerability of side effects, and repeat the process. I will do this as long as the cancer responds to the drug and does not spread further. I will be on some form of chemotherapy for the rest of my life.
I received my monthly Xgeva injection for my bones which I’ve tolerated much better this month than the Zometa intravenous infusions I was getting since October. Those treatments were giving me difficult side effects.
Thanks to you all for reading. I appreciate all of the warm greetings I’ve had so far.
Blogging Her Life With Cancer
by KJ Dell/Antonia
When I called on readers to submit the blogs they loved for the Motherlode blogroll, one name came up more than any other: Lisa B. Adams. And I can understand why. The best personal blogs come from people on a journey through something that is as intense as anything they’ve ever experienced, and Lisa is on a journey none of us want to be on. She has breast cancer, and last fall she learned that the cancer had metastasized to her bones, becoming Stage 4 breast cancer.
It’s hard for me not to resort to clichés in talking about Lisa’s blog — to say things like “she’s taking it one day at a time” and “she’s playing the hand she was dealt.” I suspect that those clichés are an excellent way to distance myself from her experience. But it is Lisa’s gift that she does not allow that distance between herself and the reader. She has a directness that draws you in, and she tells her story in a way that is never maudlin. It’s just … her story. It could be anyone’s, but it’s hers, and she’s willing to simply tell us how it is to be her.
I wrote Lisa, and asked her to tell us how her blog began and what it means to her, and to describe a few of her favorite posts.
I probably started blogging in the reverse order many people do. Rather than it mattering intensely to me and then later realizing it mattered to others, I started by doing it for others and then realized how much it was part of me.
I’ll explain a bit. When you have had cancer and are one of the first ones to have it, you become the reference point as others are diagnosed. “Oh, Lisa had breast cancer… you should talk to her. Do you know her?” This is a natural branching out of social circles based on disease.
As a person who gets asked for advice all the time (most frequently about medical information), I was asked repeatedly for advice about cancer and how to help people who had friends or relatives who were diagnosed. Once I started writing informative pieces to share with them and saw their reactions, I realized I filled a void in the cancer blogging community at that time. As a result, my interactions with readers and the writing process itself became fulfilling in a way that my prior academic work never had.
I strive in my writing not to always focus on cancer per se. A few of my posts are, in fact, technical updates on my condition. These are the posts I like writing the least. I focus on the emotions of cancer … the disease itself is not usually what’s important. Instead, what I try to focus on are the emotions that accompany these hardships: fear, anger, despair, hope, grief, love.
A few of my favorite posts:
“These Things Are Not Tied With a Pink Ribbon” is an emotional reaction to Breast Cancer Awareness Month and details why I think those campaigns don’t relate to me.
“If You Knew Suzy, If You Knew Me” is a reaction piece to the Wall Street Journal reporter Katie Rosman’s book about her mother’s life, “If You Knew Suzy.” This piece is special because it really explores the very reasons why I write. If you want to know why I do what I do, you need only read this piece. I write to be known. I write to be understood. I fear others won’t be able to do that for me, I must do it for myself. In the process, I’ve found that others can learn and grow. I am glad that we all can do that together, even if the circumstances are not the ones I want.
“The Hardest Conversation” (published in The Huffington Post) details a long talk I had with my oldest child (age 14) shortly after I received the news that my cancer had metastasized. I think one of the reasons people like to read my blog is that they want a window into a family where difficult topics are discussed openly and honestly. We are a society which often does not treat children as if they can handle illness, death and tragedy. I believe teaching children coping skills is one of the most important things I can do as a parent. This piece has been one of the most personal and important ones I’ve written.
Some parents feel their job is to protect their children. I believe protection should not equate with hiding information. To me, protecting means educating them how to deal with what the difficult things life hands them.
“To My Dearest Children” talks about some of the joys of parenting and explains to them that being their mom is the best thing I’ve ever done. It’s the one job I haven’t quit, and the role I think I do best.
You can find Lisa’s blog here, and soon on the Motherlode blogroll, which will appear in the sidebar just as soon as I’ve welcomed a few more blogs. That main blogroll will be short, strong and as broad as I can make it. We’ll also be adding a page of resources — blogs and other sites you can look to for specific topics or to find some new reads. I’ll keep that as current as possible — so if you ever click through to a dead or abandoned blog, let me know.
February 27th, 2013 §
There are always eyebrow-raising things people say to those with cancer and/or their families. Maybe not everyone would find each of the comments listed below to be offensive but they’ve been submitted by readers as ones they wish they hadn’t heard. I like to revisit this topic every so often to allow people to post comments and add to the list. Some of these come from the comments the last time I discussed this topic (here
I’m not going to respond to each. I’m just going to list them for your consideration. Some are just strange. Some miss the mark. Some are downright rude.
They weren’t all said to me, but they were said. Gee, that almost makes me want to have an award for the most offensive one listed below…
“It will all be okay, I just know it.”
“Someday you will put this all behind you” (to a stage IV patient)
“Don’t worry, things will get better.” (to a stage IV patient)
“So when will you be all better?” (to a stage IV patient)
“When will your cancer be gone?” (to a stage IV)
“But you don’t look sick.”
“Lance Armstrong cured his stage IV cancer. You can too.”
“But I thought you had chemo and surgery last time. How could it be back? This is why people shouldn’t do chemo.”
“Do you think it was a waste to do chemo last time?”
“Live in the moment.” “Be strong.” “Fight hard.” “Keep your chin up.” “Don’t give up.” “Attitude is everything.”
“We just need a miracle for you.”
“If anyone can beat this, you can.”
After telling someone I had stage IV: “Wow. I’m going to miss you.”
“Is it terminal?”
“What’s your prognosis?”
“It could be worse, you know.”
“Everything happens for a reason.”
“It’s all part of a larger plan.”
“You’re only given what you can handle.”
“All you need to do is think positive.”
“Half the battle is the mindset. Be determined to beat cancer and you will.”
“Now that you’ve been through this you’re due for some good things to happen.”
“I’m sure it’s fine/I’m sure it’s nothing.”
“Well, you’ve been needing a vacation for a while and now [during chemo] you get to lie around and read books all day. What could be better?”
“Well, do they think [the chemo] is going to do any good?”
“At least it’s not on your face where everyone could see the scars, besides you don’t really need your breasts anyway.”
A new-agey friend asked me if I had been really angry about anything 7 years before my diagnosis that I had repressed. (What had I done to cause my DCIS?)
I was advised to write a letter to my husband detailing how much I loved him so he could have something when I died. [My husband] was standing next to me as I was being given this little chestnut.
One said to me the day after my malignant melanoma diagnosis: “Maybe this will help you evaluate all the things you need to change in your life.”
Last year I had part of my cervix removed surgically for PRE-cancerous cell growth. I was at home recovering from surgery and still had days to await the results of whether or not I had clear margins, etc. Those days that drag on and you just wonder and hope. My mother in law came over with dinner (nice) and then proceeded to stand there and tell me about every person she knew with cancer, how they died, and how their families went on.
When my mother was diagnosed with breast cancer, I was a wreck. My (now ex) husband got tired of it really fast and made a rule to confine my sadness to one day per week: “you are only allowed to cry about this on Fridays.” If I felt like I absolutely had to cry Sat-Thur, I had to do it in private.
The worst thing said to me was right before I was to have a new lump checked out. I was a 7 yr breast cancer survivor at the time, with 3 children ranging from 14-8 yrs old. When I told a pastor’s wife I was worried about the lump, but was most worried about my children if I got bad news, she responded, “oh, they will get over it. You’d be surprised how quickly. I know I got over my dad dying in a year, and I was about their age.”
“Gosh, I thought chemo was supposed to make you lose weight”
Nearly every person I told about my mother’s death felt the need to tell me about some relative of theirs that had passed away and how awful their death was.
The very stupidest thing was said to me recently, a few months after treatment ended for a recurrrence. I was out to eat with my youngest son, now 16, and ran into an acquaintance. She said she’d given it a lot of thought, and wanted me to know that there were “perks” to dying at early age, in case I did. I’m 47. (and feeling fine by the way, and had just told her so.) But she proceeded to tell me 3 of “the perks” if I were to die early. One “perk” was that I wouldnt be the grieving spouse, another was that i had already parented “through the fun years” and wouldn’t have to see my kids make bad life choices, and the other one….oh, I wouldn’t have the aches n pains that came with old age like she was experiencing. She was “sincere” and had “thought about it,” and is a nurse!! Just blew my mind.
1. Random stranger on the street: Do you have cancer? Me: Yes. RS: How long do you have? Me: -
2. On telling peripheral people (e.g. hairdresser, or friend of a friend) of my diagnosis, they proceed to tell you that their uncle/cousin/friend’s mother had cancer and then that they died. I guess they are trying to make a connection and it’s the first thing that pops into their head, but I really did not want to hear about death at that time.
3. An email from a friend of a friend (a homeopath) telling me that breast cancer is caused my a negative relationship with your own mother. This is definitely not the case!
4. People asking me if I knew how I got my cancer (and then offering me something to read about some “natural” therapy they have heard about or are selling).
5. I fully got sick of hearing the words “positive” and “strong”; so much so that I banned my family and friends from saying them.
“People choose their sicknesses. He chose to have cancer by not managing his negative energy and he chose to die by not fighting.”
Someone I know has pancreatic cancer. She didn’t suffer too many adverse effects throughout chemo which was fortunate for her. Her daughter, who knows I went through chemo all a year earlier, made a comment that her mother must have a particularly strong constitution because she didn’t have trouble with side effects. Ya, unlike like the rest of us weak wussies who who were knocked out by chemo! I knew that she was grasping at any tiny sign that her mom might experience a full recovery so I kept my mouth shut.
I’d welcome hearing your stories. I am sure I’ve missed some doozies.
A post with suggestions for what to say/do appears here: “Some thoughts on how to be a friend to someone with a serious illness.”
February 26th, 2013 §
The months and years go by. Like all of you, I mourn the quick passage of time. “Where did the school year 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, reading that book a friend recommended— many things went undone in the dark and cold months of winter.
Maybe there were emergencies, maybe there were health issues, maybe you just couldn’t get the energy together to accomplish everything you wanted.
Regardless the reason, there can be a bit of disappointment when a season ends.
Growth happens in fits and spurts, not with smooth, sliding grace.
With each phase comes
At the time of my mastectomies my reconstructive surgeon placed tissue expanders in my chest. These were temporary bags of saline that would be slowly filled to stretch out my skin to make room for the silicone implants that would eventually take their place. Each week, like clockwork, I returned to my surgeon’s office. He accessed a port in each expander with a needle, and added saline to each side to make it bigger.
Each time after a “fill” my chest would feel tight. The skin wasn’t big enough for the volume inside, and it would react to the increased pressure by stretching. Until the skin could replicate there was achiness, tightness, a slight ripping or tearing feeling.
A similar sensation happened to me during my pregnancies; the growth happened fast, I got stretch marks. I had visible proof my 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
I am often moved to tears as I watch my children grow.
I sit in wonder at the succession of infancy, childhood, and adolescence.
I know that as a mother I lack many skills, but I also know that the words I have written in my blogs and essays will one day be a gift to them tooNot a gift to the children that they are, but instead a gift to the adults that I am raising them to be.
Each June as the school year ends I marvel that another academic year has passed.
The growth happens too fast.
The growing pains hurt.
The stretch marks might be invisible, but they are surely there.
February 21st, 2013 §
“I look so old in that picture.”
I hear this one a lot now that my friends and I are what they term “middle-aged.” They want to see and choose pictures before they get saved or shared; the confidence and carefree attitude in photos from our youth has slipped away.
It’s not just people my age, though. For example, my father in his 70s comments on how old he appears in photos I take, too. With a full head of white-gray hair, he doesn’t look old, I think… but even if he does? What’s wrong with looking his age? With plastic surgery and Hollywood showing altered appearances all the time it’s almost shocking when we see people who haven’t adjusted their appearance. Maggie Smith (most recently of Downton Abbey fame) has a face as wrinkled as a Shar-Pei, and we love her for it.
Aging isn’t easy. There are cruel sides: bodies that hurt, diseases like Alzheimer’s that strike mercilessly, loss of independence and body control. For sure, I don’t mean to imply that getting old is pleasant.
Aging is, however, the price one pays for living.
I look at getting old as a positive now. To age means to be alive. For some of us getting old is now a pipe dream. I will miss an entire generation of my life. That is the truth about my stage IV breast cancer.
I face the reality that I am not middle aged. I am living my own old age now, in my 40s.
February 15th, 2013 §
When I was diagnosed with Stage 4 breast cancer last October I could not envision the future. I wasn’t sure if I even had one. Or if I did, for how long.
It has been four months now. Some people don’t even get four months after a Stage 4 diagnosis. But I am here. And my cancer is responding.
Last October I wouldn’t let myself think about Spring. Or Summer. Or a three year renewal on a magazine. I’d wonder if I would outlive the expiration date on the can of food I’d put in my grocery cart. I renewed my son’s USTA membership for 10 years and hoped fervently it would be my job to renew it in a decade, not Clarke’s. I wondered if I’d see out the rest of my car lease. I just didn’t know what to expect.
In some ways I still don’t. My future is unknown. But that is good, I’m coming to think.
When I go to an appointment with my oncologist and he isn’t changing anything, telling me it’s time to try a different treatment, or handing me a piece of paper with a list of scans, I am happy.
On Thursday I had my usual 2 week appointment with my local oncologist. My tumor markers were down 7 points, erasing the blips up I’ve had lately. The tests are not precise. 7 points doesn’t correlate to a particular reduction, but it’s good news. It means I can continue with my current chemo. I did increase my dose this round and will repeat that again this time. We are hoping to find the “sweet spot” where I get therapeutic efficacy but still have manageable side effects. That’s the goal.
My oncologist talked about another goal for me today. We both know for now these two week intervals are needed. But one goal he would love to achieve is even more stability with my body’s response so that I can have longer stretches of time between appointments. Having bloodwork, checkups and my monthly bone drug (Xgeva) all at once would be grand.
When he told me my results I said, “that’s a two week reprieve.” He said he wants me to be able to think in longer increments. I’d love that too. I’m thinking about seasons now.
Let’s go for it. Let’s make plans. Let’s see what happens. Together.
February 11th, 2013 §
The finish line is the goal.
Runners strap on shoes, push their bodies, train for months.
Do it well. Do it faster. Faster than the others.
Laps around the track, tires squealing, pit stops along the way.
Checkerboad flags, shake the champagne.
Biking stages, climb the hills, pass the others, wear the gold jersey.
You got there first.
But I do not want the finish line.
I do not want to get there first.
I am dragging my feet.
Digging in my heels.
Don’t make me go.
I’m fighting, crawling, resisting, doing everything I can.
Make the time slow down,
Make the days longer,
Make the end out of my sight.
I don’t want to be the first to the finish line.
I want to be last.
This time, losing would be winning.
February 5th, 2013 §
Today’s brand new post is over at Huffington Post. You can click here to read it: The Hardest Conversation.
This piece is about the conversation I had with Paige after my diagnosis in October of Stage 4 breast cancer. As the oldest of my three children, she has many questions that the younger children don’t. I wrote the piece back in October but kept it to myself.
I waited until I felt she was ready to read it and give her approval before I published it. I would not publish a piece like this without her permission. She said, “You should publish that, Mama.” I think she knows it might help someone else. We both hope it will.
I’ll be back with an update in a day or two. I’m back on an increased dose of chemo this week and did try switching to the new bone=strengthening drug.
Thanks for all of your comments, emails, and support!
February 4th, 2013 §
I awaken to the sound of the snowplow scraping,
Metal on asphalt, grotesque.
I didn’t move last night.
Soft bedding, peaceful house, drained body.
I lay in bed not wanting to start the day.
Friends will gather,
We will share and learn and grow.
But before we do,
when we eat,
I know I must dive headlong into the abyss.
My breakfast will come with a side dish of chemo,
A higher dose than last time.
It’s time to begin again.
Back to reality some will say when we part.
I never left it behind.
February 1st, 2013 §
I’m re-posting this piece quite simply because I find that when I re-read my pieces I find something new in them each time. Maybe readers will, too. Even though it was only written in November, I find it interesting to look back on what my mindset was then, only weeks of learning about my cancer metastases. The idea for the post below came from re-reading A bookmarked life. The idea that there are consistency, permanence, and predictability in the world is a mantra we simultaneously embrace and need while also knowing it’s patently a falsehood… everything is always changing, it just depends by how much.
Each day is different. Each moment, too.
It still seems surreal, this diagnosis of metastatic breast cancer.
It’s strange how quickly the horrific can become regular: the chemo, the side effects, the new routines.
Oncology appointments, I.V. infusions, medication refills all start to fill my calendar.
I start making lists of things I need to do. I prioritize them.
It’s not always about what’s actually the most important, it’s also about finding things that bring me small moments of joy.
The small moments are the ones that bring tears to my eyes. Tristan’s little voice saying, “I love you, Mama. You’re the best Mama in the whole wide world” is enough to make me misty.
I still lose my temper. I still yell sometimes. Often it’s misplaced anger, a manifestation of my frustration with my situation.
I haven’t suddenly turned into the world’s most patient person. Sometimes cancer makes me the most impatient one, in fact. I feel the clock is ticking. I don’t have time for nonsense. But that’s not a way to be. I will still try to be better.
I try to be the one to do things with my children as much as I can. Even if there is a babysitter in the house Tristan always reads to me at night for his homework: that is sacred. I still save artwork and photographs and remind them to brush their teeth and clean their rooms.
I try to do the little things: helping Colin with a school project, keeping Paige company while she does homework, watching a sports practice if I can. I go to the grocery store and I work on the holiday card. I still take pleasure in getting the stubborn stain out of Clarke’s dress shirt that the dry cleaner couldn’t.
My motto is that I will do as much as I can for as long as I can.
I don’t ever have a moment that I forget about my cancer. I think that’s the part about it being new. Even when I was diagnosed the first time — even after I finished chemo and surgery and all of it– it still took at least a year for me to be able to push the daily fear down. Of course now the fear has been realized. I am living it. I am living my nightmare, one many people share.
And yet, the morning comes.
I see the light of day and I get out of bed. I see the faces of my children. I kiss my husband goodbye when he leaves for work. Each day I have is a day that matters. Each day is one to make a memory with my family and friends.
Each day is one more than I had the day before.
But let’s be clear: there is no joy in this disease.
My appreciation for my days should not be interpreted as supporting the nonsensical idea that “cancer is a gift.” There is nothing positive about this disease; I would give it back if I could. I did not need cancer to show me the value of things. I always knew these things were true. I never took them for granted. I knew what demons could be lurking.
I did all I could. It was not enough to keep it at bay. But maybe, just maybe, I can keep it at bay for a while.
I still haven’t fully come to terms with what this diagnosis means, but that’s because there’s no real way to know. We don’t know enough yet. It is the uncertainty that is the most difficult part for me. Will this chemo be the one that lasts for a while? Will it fail? When? What next? How long with that one last? My body holds the answers, but it’s not showing its hand yet.
I have to learn to ride this roller coaster. I’m just not there yet. And I don’t really know how long that is going to take.
I walk past people on the street and know they have no idea what is going on inside my body.
People in front of me in line at the gas station don’t know there’s chemo in my purse.
I look like everyone else. I have hair on my head. I ask the checkout person to pack the bags light because I can’t carry anything with my left arm now (the cancer has fractured two ribs on my left side).
Sometimes I want special treatment. I want a Get Out of Jail Free card. Most of the time, however, I want to stay home. Hide out. Be invisible.
I’m still processing. Reeling. But while I’m doing that I’m living.
January 31st, 2013 §
I always think these updates must be boring to read. I know they’re necessary, and important. I know this is how most of you get the nitty gritty details on my treatment. Somehow, though, I always wonder if they are actually educational or if they are too technical. So, that’s why I try to limit them to about once a week or when there are changes. My goal is to show you how these decisions get made (in my case only). Some cancers have very specific and formulaic treatment schedules. Metastatic disease often does not. It’s unclear which drug(s) will work and for how long. It’s never known how a patient will tolerate the drug initially and cumulatively as time goes on. The patient has a lot of leeway in many of these cases. There is no blueprint. A good team has communication about options and constantly revises their strategy.
I had this week “off” from chemo. The last few days I’ve felt very good. I have been spending lots of time with our new dog, Lucy, who has brought joy into our home in so many ways. We just adore her.
I was at Sloan Kettering last week and today I met with my local oncologist. Fortunately everyone in agreement after a review of all of the options. One of the things that’s always a concern is quality of life. My doctors are very keen on making sure I am comfortable and able to do things I enjoy. The balancing act of aggressive treatment to extend life without sacrificing too much quality of life is an integral part of treating metastatic cancer. There is no cure. But the goal is holding off the inevitable as long as possible.
I’ve had lingering trouble with the monthly IV bone drug Zometa. Some readers suggested I ask about the other available drug Xgeva, a subcutaneous injection also given once a month. They anecdotally reported fewer side effects. Both of my doctors do not believe Xgeva actually is better for my needs cancer-wise than Zometa, but also agree it’s not worse. One option was to try an IV steroid infusion of Decadron immediately prior to the Zometa to see if it helped with side effects. The other option was to try to the Xgeva and see if I had any side effects from that (most people report fewer to no problems with it, though most also do not have problems with Zometa after the first one or two times). I’ve opted to try the Xgeva. I would usually have gotten it today (28 day interval) but I have plans this weekend that are very important to me. I don’t want to risk being ill and having to cancel. It will not be a problem to get the injection on Monday, so I will postpone it for a few days. We’ll see how I tolerate the Xgeva shot and go from there.
My tumor marker number stayed relatively constant after that small increase two weeks ago. This is good, but leaves us in a bit of a quandary. We aren’t yet at the point of doing a repeat PET scan. The rise is not enough to warrant that, though we will do it soon. Neither is the increase enough to assume the chemo has stopped working after initially being responsive. We don’t know, as I said in the last update, if it’s an anomaly or a trend. The only things that can show us are more data points. I happen to like data points. I like seeing what happens every 2 weeks even if it means more of an emotional rollercoaster. We are only 4 months into this and I don’t feel that we have a handle on how I’m responding yet. Only time can shed light on that. I did have a good initial reaction to the drug which was encouraging.
So… since we’ve achieved a good decrease in the last 4 months with the Xeloda but now that is slowing down and I seem to have “bottomed out” on its efficacy, what now? We want to keep everything where it is. If we can get more of a decrease, that’s the best. If not, we need it to hold steady. We all agree it’s time to try again to increase the chemotherapy dose and see if I can both tolerate it and get a stronger marker response. I started at 8 pills a day in the beginning (for about 2 months) and had to decrease about two months ago to 7 pills a day when side effects became intolerable.
It’s time to walk into the fire again. There is no manual for how to do this. We all brainstorm, we talk about what my goals are, we talk about what makes scientific sense. The idea this time is to increase, but not go back to the 8 pills for the whole round. Instead, to try to get more chemo in my system, I will alternate 7 and 8 pills for the week. We’ll see how I do. Debilitating nausea, stomach pain, hand/foot syndrome, and migraines have been my issues with this drug in the last month.
Also, I will change my start day. Thursday night was my usual. Lately, however, I’ve felt rotten on the weekends (both weekends this time around, as effects often last into day 10 or 11 which technically are “off” days for me). I will now start chemo on Saturday night or Sunday morning and see if we can shift my “rotten days” to weekdays instead. I want more quality days with my family on weekends if I can get it.
This is all educated guesswork, a constant dance of drugs and schedules and side effects and efficacy.
There is no manual.
There is no “must.”
There is only me, floating away, trying to grasp the fingertips of treatment and hope.
January 29th, 2013 §
I wish I had been more accepting of help in the early days when I was first diagnosed with breast cancer in 2006. I wish I had not seen it as a personal “weakness” the way that I express in this piece. 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 and I now try to graciously accept help when it is needed.
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.
January 28th, 2013 §
I wrote this only a few months ago, but I am reposting it because it strikes at the core of what I feel so often. So many people responded to this piece saying that whether because of cancer or some other medical/life experience they could relate. Sometimes feelings like loneliness can be the hardest to describe.
I can see how isolating metastatic cancer can be already.
It has become hard for me to be around other people.
I find myself hiding as much as possible.
When I am in the company of others my mind wanders.
I can’t focus. I feel the need to retreat.
For the time being I just can’t relate to others’ lives which only weeks ago were so similar to my own. Now… we are a world apart.
It’s not their fault. It’s just that circumstances make it so that I am selfish. I try to conserve my energy as much as I can.
Already I can see relationships suffering. There is a fine line between giving space and putting distance. Some are already dropping away, and we’ve only just begun. Others have risen to the occasion and helped more than I could have dreamed. Only true friendships are going to make it under these circumstances. Sometimes the isolation comes from being shut out. Sometimes it comes from locking yourself away.
Phone calls go unanswered, emails often do too. Thank you notes don’t always get written, social commitments get canceled or never scheduled in the first place.
I know that people cannot truly understand.
I don’t want a support group right now because metastatic cancer has a wide range of outcomes. I don’t know if I will be in a rapidly progressing group or not. I don’t know whom to look to that is “like me.” There is no way to know which group I will be in, who my peers are.
Right now I am very sensitive to death, to pain, to suffering. It’s very hard for me to see right now. I’m too raw. I just don’t think I’m ready for a group. But I won’t say I never will be.
It’s difficult to listen to people complain about trivial things, normal things, things I was complaining about just months ago.
Now those complaints just annoy me, or make me sad.
I want to scream, “I want your problems!” And I do. I want that life back. I want to turn back the clock. I just don’t want it to be this right now.
One of the things that bothers me the most about this disease is the knowledge that the way I feel right now is the best I will ever feel for the rest of my life. It’s only going to stay the same or get worse. That thought terrifies me.
When you feel crappy you want the time to go faster. You just want to get through it.
The problem is that what you may not have is time.
It’s a conundrum. You want the time to pass, but this is the only time you have.
I know so many people say, “No one ever knows how much time they have. You have to make the most of every day, of every moment.” I know that’s true. But the knowledge that there is something identifiable in your body that is a threat, is most likely to be that which kills you, bears a different weight. Of course the doctors don’t know exactly how much time it will be. There is no crystal ball.
Everyone tells me the stories of friends and relatives who were told they only had months and years later they are still alive and doing okay. I am told these stories every single day. I get it. I do. And I love them, they give me hope. But often those people’s diagnoses and particulars bear no relation to mine.
Additionally, there are also stories of the people in the other group, the ones who thought they had years and didn’t. People probably have the good sense not to tell me those stories. But they are out there. It’s not that I focus on the negative. It’s not that I necessarily think I will be in that group. But anything is possible. On both sides.
The part that scares me: I’m only at the beginning. I hope that I will get stronger, gain acceptance as I get used to this diagnosis. But I’m not sure about that. I truly believe I could handle this better if I didn’t have so much worry about my children and what effect this will have on them. I wish I could protect them, shield them from this agony.
There are good days and bad days. I must do my best. But being the one everyone is watching takes a toll. Everyone will take their cues from me. I will set the stage for how my friends and family will deal with this: how I handle metastatic cancer matters. I am laying groundwork. I feel I must do it right.
Some days that is an overwhelming task.
“Doing it right” doesn’t mean I have to be positive all the time. Doing it right means I have to be honest. It means I get up each day and do the best I can. For myself, for my husband, for my children, for others who may have cancer and those who will get it. It’s okay to be scared, and angry, and sad, and everything else.
It’s all part of this.
And for me, so is sharing.
January 27th, 2013 §
My brother Mark has kindly edited out all of the lead-ins and station breaks and created a permanent link to the show. It’s about 40 minutes long. I really enjoyed talking to the hosts and hope they will keep their word and have me back; there were so many subjects we didn’t even touch on.
Click here to download the podcast.
January 27th, 2013 §
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 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 have 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.”
January 23rd, 2013 §
First order of business is a late reminder that today (Wednesday) I will be on Doctor Radio on SiriusXM 81 from 1:00-1:30 EST on the Oncology show.
I’ll be talking about my first diagnosis of stage II cancer and then my recent diagnosis of stage IV metastatic cancer, my blog, and how to improve the doctor-patient relationship. You can call 877-NYU-DOCS if you want to ask questions! We will be live for that time period. You can even email questions in during that time (or even before, just send them to firstname.lastname@example.org and say it’s for me on today’s oncology show). The half hour will go fast I’m sure. The taped show will then repeat tonight at 11 pm. I think you can go here to listen for free for a week if you want to listen in today: http://www.siriusxm.com/freetrial
I had intended to be posting each day this month but this weekend caught up with me. In the negative column, side effects from chemo this weekend were worse than usual. The nausea was the most debilitating one. Two out of the three weekend days were pretty much lost. As a result I could not get posts up. I am sorry about that.
However, these negatives were overshadowed a million times over by the other reason I was too busy to be writing. The photos you see are of the new addition to our family. Lucy is a two year old Pembroke Welsh Corgi that came to live with us on Sunday. She is a sweet and loving dog, and has made the adjustment to her new home seamlessly. My children (14, 11, 6) have fallen head over heels in love. Paige knew we were getting her but the boys were unaware… I loved having a surprise for them. I’ll write more about that soon.
We thank Gaye and John Georges at Calista Corgis for raising this beautiful dog who is a treasured part of our home now.
I’ll include a few photos and then be back this week finish out my month of revisiting some of the most-requested old posts. Yesterday I was at Sloan Kettering talking about side effects, PET scans, and tumor markers. As always, my doctors are very thorough and I always leave with more information about options and perspective. I was also able to share with Dr. Dang that with your generosity we’ve raised over $15,000 in 3 weeks for metastatic breast cancer research on my Sloan Kettering Giving page.
Thanks to all for your support this week.
January 19th, 2013 §
I wrote this back in 2010. Just like in this week’s “I think so too” I decided to think about the history of an object.
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. Indeed, 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 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 17th, 2013 §
I don’t usually rant, but something has me steaming. Today the following exact message appeared in my Facebook inbox:
So here is the time of year again when we try to raise awareness for breast cancer through a game. It’s very easy and I would like all of you to participate. Two years ago we had to write the color of our underwear on our wall. Men wondered for days at what was going on with random colors on our walls. This year we make references to your love life status. Do not answer to this message just post the corresponding word on your wall AND send this message privately to all the girls in your contact list!!!!!! BLUEBERRY = single; PINEAPPLE = it’s complicated; RASPBERRY = I can’t / don’t want to commit; APPLE= engaged; CHERRY= in a relationship; BANANA=married; AVOCADO= I’m the better half; STRAWBERRY= can’t find Mr. Right; LEMON = want to be single RAISIN = want to get married to my partner. Last time the underwear game was mentioned on tv, let’s see if we get there with this one !!!!!Copy and paste this message into a new one and send to all your girly friends and update your status with your answer. DO NOT RESPOND TO THIS CONVO, just leave and participate.
I’m going to keep my reaction short. I’m hoping writing something down like this will allow people who are as infuriated as I am with these silly requests to have something to react with.
First, I give you permission to ignore this crap. Better yet, write back to the people who have shared it. Let’s do some real awareness here.
The above instructions are not awareness. This is offensive. Breast cancer is not a joke, awareness does not come from sharing the color of your underwear or your marital status (the whole “tee-hee, wink-wink” attitude adds to my disgust). Even if it ended up on TV, that still would not be educating people about breast cancer they didn’t know before. All it does is show the world that lots of people are willing to post silly things as their status updates.
Let’s do a piece of education right here. The status update says “only send this to your girly friends.” Um, hello… men get breast cancer too. Men are also the husbands, fathers, sons, brothers, and some of the friends, coworkers, nurses, and doctors who care for and are left grieving for people (men and women) who die of breast cancer. We should not exclude them from ANY discussion of cancer.
Just because it says it’s about “breast cancer awareness” doesn’t mean you have to agree. Go ahead. Ignore it. Or write back and tell them why you don’t want to be included in these things anymore. Another blogger, Susan Niebur, wrote about her take here. She was an astrophysicist, by the way. She died of metastatic breast cancer.
Anyone who has breast cancer and uses your FB status update as an indicator of whether you support their cause is not very enlightened. When I rank “how to help those of us with cancer,” sharing one of these paragraphs as a status update is the lowest possible method of showing support. There are endless ways to do that. I think it actually is the opposite; sharing these status updates makes people feel they are doing something real for breast cancer causes when they aren’t.
I’ve also had it with the “I’ll bet most of my friends won’t share this post” attempt to guilt me in to sharing something like “share this if you think domestic abuse is awful.” “Share this if you think autistic kids are special.” Well yes, actually, I believe both of those things. And just because I didn’t share them as my status update doesn’t mean I do NOT agree with the statements.
Education underlies awareness. To even call something a “game” and honestly believe it’s doing anything to help any aspect of this disease is delusional.
I also think that those of us who have had breast cancer have an obligation to speak out if we disagree with these posts. People look to us to see how we react. If we not only read these updates but share them, it does constitute endorsement. It says we agree. It says it’s okay to think of breast cancer awareness this way.
I say: count me out of these Facebook games.
I have stage 4 breast cancer and it is no game to me.
January 17th, 2013 §
There is comfort in routine. Some people are superstitious. Sometimes they want the same chemo nurse, the same appointment time, the same chair. “If it’s working don’t mess with it” applies to many things about treating cancer.
I’m always thinking about continuity and the stories that objects tell. I’ve written twice about the tape measure my plastic surgeon used to measure me before surgery. I’ll post those pieces again this month. Whenever I sit in a chair in a doctor’s office I think about all of the people who have sat in it before me.
Each person has a story. So, too, does each chair. Here is one from 2011.
Back in 2011 my plastic/reconstructive surgeon asked, “Did you know it’s been four years since your reconstruction surgery?”
Immediately he chuckled, “Of course you know that,” he said, realizing my mental calendar was certainly more precise than his– of course I marked the days off in my head.
Whenever I sit in a waiting room I am instantly transported to that place and time. I sit and watch patients walking in and walking out. I can tell by hearing what the time interval until their next appointment what stage of treatment they are in.
I sit in the chair, the same one I did four years ago.
It’s the same chair, but I am not the same person.
My body is not the same.
There is continuity in that chair.
There is a story it tells me.
I wrote this piece to the next person who sits in that chair.
That chair you’re sitting in?
I’ve sat in it too.
In waiting rooms. Chemo rooms. Prep rooms. For tests. Surgeries. Procedures. Inpatient. Outpatient. Emergency visits. Routine visits. Urgent visits. To see generalists. Specialists. Surgeons. Alone. With friends. With family members. As a new patient. Established patient. Good news. Bad news. I’ve left with new scars. Prescriptions. Appointments. Words of wisdom. Theories. Guesses. Opinions. Statistics. Charts. Plans. Tests. Words of assurance. More bloodwork. Nothing new. Nothing gained. Nothing but a bill.
That feeling you’re having?
I’ve had it too.
Shock. Disbelief. Denial. Grief. Anger. Frustration. Numbness. Sadness. Resignation. Confusion. Consternation. Curiosity. Determination. Dread. Anxiety. Guilt. Regret. Loss. Pain. Emptiness. Embarrassment. Shame. Loneliness.
That day you’re dreading?
I’ve dreaded it too.
The first time you speak the words, “I have cancer.” The first time you hear “Mommy has cancer.” The day you wear a pink shirt instead of a white shirt. Anniversary day. Chemo day. Surgery day. PET 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. Tears. Avoidance.
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.
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?” Asking the grocery line folks to “make the bags light, please.” 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:
Targeted treatments. Effective treatments.
Ultimately, someday, perhaps: a cure.
Don’t you think that would be amazing?
I think so too.
January 15th, 2013 §
When you have cancer you become an expert in reading cues.
Actually, when you’re in any serious situation I think that’s the case.
So when the nurse showed me into my oncologist’s office this morning, instead of to the usual exam room, I didn’t even make it through the doorway before forcing him to look at me while I said, “Uh-oh. This is not good.”
The door closed and he turned the computer screen to me. “Well, it’s not awful. It’s not terrible, but it’s a change.”
We looked at the trend of my tumor marker tests since October when I was diagnosed with metastatic (stage IV) cancer. Since that time my markers have declined quite consistently (with one exception which I’ll explain in a bit).
I get my blood drawn every two weeks. Some oncologists might think it should only be done monthly at this point. But my doctors and I are data people. Hey, when the news is good, who doesn’t want to hear/see it as often as possible? When it’s bad news, I could use it less frequently, thank you very much.
This week’s tumor marker was elevated slightly over the one from two weeks ago. It’s almost exactly what it was one month ago. The fact of the matter is had we drawn it monthly we’d be saying it’s stable.
But seeing this one blip now causes conjecture and concern. Now, it could be a natural variation in this test. After all, this test is not precise and does vary. No one tests patients daily to see how much it actually changes over the course of a month or a week. Going back to my earlier caveat about having had one previous rise in the marker: I had it drawn twice in four days when I was diagnosed back in October. Those results showed a rise of almost 5 points in four days — but were considered within similar range. Now I’m showing a seven point rise in two weeks. I’m not going to go into the standard devation and all of that stuff right now. It just doesn’t matter for these purposes.
For now, it’s just a blip. We don’t know if it’s an anomaly or part of a trend. There’s nothing to do but stay the course and wait. I’ll be starting chemo again this Thursday at the same dose as I have for the past few rounds (total of 3500 mg/Xeloda a day, split into two doses, 7 days on/7 days off).
My hands have been worse this round. My oncologist warns me that most people can’t tolerate long term use of this drug. I am not thinking about that. I’m thinking about bearing whatever I can for as long as I can if it’s working. The question is now: is it still working?
My feet are doing well actually (strange to be posting a “foot update” but…). They are very sensitive to shoes so I wear furry slippers at home and at least now that it’s winter I can wear soft lined shoes during the day. I do not have significant pain while walking. That is great in terms of quality of life.
My fingertips are simultaneously numb and very sensitive at the very tips. They are peeling and any pressure hurts. The finger wrinkles where the actual fingers bend (to grip) are white and cracked and sore. But I am able to drive which is a real help.
My shoulder (from the fracture in the collarbone area) is feeling much better. I still don’t lift anything on that side but day-to-day it doens’t cause me discomfort like it did. This is good; it means the bone is healing as the cancer shrinks it and the bone strengthener that I take by IV is helping. I am in discussion with my two oncologists to potentially try a different bone drug next time because I still am having side effects after each round of the IV one (normally only happen the first one or two times). This would be a switch from monthly intravenous Zometa to monthly injection of Xgeva.
After we see what the bloodwork shows in 2 weeks we’ll re-evaluate everything. It might be time for the PET scan, might be time to try a higher dose again of this chemo, might be time to watch and wait a bit more (it would be too soon to abandon ship on this chemo with just two data points).
I’ll discuss all of these issues with my other oncologist next week and I’ll count the days, minutes, and seconds until I get my next results back.
January 13th, 2013 §
Originally written on January 30, 2009 (the two year anniversary of my surgery).
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.
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,
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
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.
and sometimes just stopping to rest
and take note of my location.
Numb inside and out,
Here comes another year
to put more distance
it and me.
January 12th, 2013 §
Now that my cancer is stage IV many things that once seemed important are now at the bottom of my list. I distinctly remember during and after my breast reconstruction that I was very obsessed with every tiny detail about my implants. What size should they be? Were they healing well? Were they even? How did they compare to other women’s reconstructed breasts?
I think after I finished chemo I needed something to focus on. It seemed that this was something positive. Something for me. Something that would make me feel better (after all, those tissue expanders before the implants were the pits).
The time between when I was diagnosed and when I had my double mastectomy was about one month. Those were anxiety-filled weeks. Though I consoled myself with the news that my cancer was confined and surgery would most likely be enough to treat it, later I learned after the mastectomies that my cancer was actually stage II.
I look now at this piece I wrote and I can still connect to it. I still remember what it felt like. But now that I’ve got metastatic cancer I don’t give a damn about how my implants look. None of that matters to me. One of my first phone calls after the new stage IV diagnosis was to my plastic surgeon to ask if there was any reason to consider removing them if it would help any of my treatments that are to come (there isn’t).
This piece was written about my first diagnosis and surgery… when it was all very new. It seems so long ago. A lifetime. It’s been six years.
In the weeks before my surgery, I looked at pictures of double mastectomy patients on the Internet. I Googled “bilateral mastectomy images before and after” thinking I was doing research. I thought I was preparing myself for what was coming.
In reality I was trying to scare myself. I wanted to see if I could handle the worst; if I could, I would be ready. My reaction to those images would be my litmus test.
Some of the pictures were horrific. I sat transfixed. I looked. I sobbed. I saw scarred, bizarre, transformed bodies and couldn’t believe that was going to be my body.
Days later, when I met my surgeon for my pre-op appointment for the first time he said, “From now on, don’t look at pictures on the Internet. If you want to see before and after pictures, ask me: look at ones in my office. You can’t look at random pictures and think that’s necessarily what you are going to look like.”
All I could do was duck my head in an admission of guilt. How did he know what I’d done?
I realized how he knew: other women must do this. Other women must have made this mistake.
The aftermath is terrible to me though not in the ways I’d anticipated. I have no sensation in my chest. I never will.
A major erogenous zone has been completely taken away from me. Yes, I have new nipples constructed, but they have no feeling in them; they are completely cosmetic. The entire reconstruction looks great but I can’t feel any of it. It does help me psychologically beyond measure to have had these procedures though.
Here I sit, two gel-filled silicone shells inside my body simulating the biologically feminine body parts I should have. And sometimes that thought is disturbing.
To be clear: I don’t regret having them put in. I’ve never regretted that. It was a decision I made, and made deliberately. I knew that reconstructing my breasts was the right decision for me. I am overwhelmingly happy with the cosmetic appearance and the wonderful job my talented surgeon did. I will always be grateful to him for what he’s done.
I definitely don’t remember what my breasts looked like before. I only remember these.
I once asked my plastic surgeon to see my “before” pictures a year or two after my reconstruction was over. You know what? My “before” breasts didn’t look so great.
In my mind they did though.
In my mind, everything about my life before cancer was better.
But that’s not the truth.
Don’t take that as an endorsement of the “cancer is a gift” nonsense though.
My mind distorts the memory of my body before cancer. Then forgets it.
My mind distorts the memory of my life before cancer. Then forgets it.
With time, I can get used to a new self.
It’s like catching my reflection in the mirror: only lately do I recognize the person staring back at me.
For over a year the new hair threw me. It’s darker than I remember it being before it fell out. It’s shorter than it was before, too.
And the look in my eyes? That’s different also.
I just don’t recognize myself some days.
Sounds like a cliché if you haven’t lived it.
But it’s true.
January 11th, 2013 §
One of the ways you can be a good friend to someone going through a difficult time is to use open-ended questions. In this way, you are not projecting your own feelings onto them; neither are you assuming what feelings they are having. Trust me: they’ll appreciate it.
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, “You must be 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.
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,”
“You should be”
“You ought to be”
“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.
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 10th, 2013 §
My current chemotherapy is oral. Oral chemos are common with metastatic cancer. My veins are happy to hear this; after my original surgeries and chemo the only usable veins I have are in the top of my right hand. All bloodwork and IVs for surgeries and drug infusions must be placed there. It’s not easy and takes planning at each visit what vein should be used for what purpose. When the time comes to start an IV chemo in the future I’ll need a port.
Oral chemo is more convenient, of course. The one I’m on now used to be an IV that needed to be administered over the course of days, so patients would need to be on an IV pump during that time. Obviously, swallowing pills and getting the same drug is better for the patient’s quality of life. I’m glad I am able to use the oral version.
For most people, the prospect of losing all of their hair is disturbing. Not just on your head, but eyebrows, eyelashes, all of it. I wrote this for a friend a few years ago. Now I have another friend about to start chemo this week and I wanted to share it again. Thinking of you, Amy.
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.
You may shed many tears over this one.
It may be harder than you thought.
I’ve heard some women say it was harder for them than the actual chemo.
Reports show women actually turn down the chemotherapy they need because they don’t want to go bald.
But hair matters.
To our kids,
To our husbands,
To our friends.
My hair has never been the same since chemo.
I’m not alone in that.
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.
The Brazilian wax done for you.
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.
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
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.
And I remember.
January 9th, 2013 §
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.
When she was diagnosed with metastatic cancer people told me not to worry: it wouldn’t happen to me just because it happened to her. That’s true. It wouldn’t happen just because it happened to her. But it did happen. And now I look back on everything I’ve said for the past 5.5 years and I am glad I expressed those thoughts as they were happening. Because my fear came true.
(from December 7, 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.
January 8th, 2013 §
“Two Cents” was one of the first things I wrote for the blog. I don’t know if it’s poetry or a rant or what. I distinctly remember writing it: I scribbled it down on the back of a brown paper sleeve from a Starbucks donut as I waited for Paige to finish her piano lesson one sunny day several years ago. I’m quite sure the impetus was being told that “things happen for a reason.” I still find this one simple, but true. Many readers still have a soft spot for this early piece in which I provide my own two cents’ worth.
Don’t tell me things happen for a reason.
Don’t tell me there is a plan.
Don’t tell me I’m supposed to learn a lesson from this.
Don’t tell me I’m a better person for it.
Tell me I’m strong.
Tell me I’m tough.
Tell me I did it well.
Tell me you care.
I don’t believe I was given cancer for a reason.
I don’t believe there is a master plan.
I don’t believe this is a test.
I don’t believe you only are given what you can handle.
I know I will learn lessons.
I know I will be stronger.
I know sometimes it is too much to handle.
I know sometimes I want to give up.
I know sometimes I thought dying would be easier.
I believe the power is in me.
I believe the power is in my doctors.
I believe in the power of medical science.
I believe unless you have experienced this, you cannot know.
I believe unless you’ve been there, you cannot give advice.
I believe unless you’ve felt it, you cannot judge.
I believe in the power of friendship and love to make the journey bearable.
I believe suffering is a process.
I believe in picking myself up and pressing forward.
I believe persistence pays off.
I believe in enjoying the gifts I’ve been given.
I believe many people will never understand.
It might sadden me, anger me, and frustrate me.
But in the end that does not matter.
I can only be true to myself.
I must be true to myself.
January 7th, 2013 §
Revisiting old blogposts is taking me on an emotional rollercoaster. Being on the other side — having things I was most afraid of actually coming true — gives the pieces a whole new meaning. Of course one of my main fears was that my cancer would return. Of course, it has, and worse. The metastases I have now are exactly what I feared most after my treatment was complete the first time around.
Again, I’d like to say that even when I feared it, as I would think most people who have had cancer do have fear of cancer returning/metastasizing, hearing the words “You have Stage IV cancer” bears no relationship whatsoever to the fear you have when it’s a hypothetical. The anxiety, the panic, the worry… all of those were only a fraction of what it felt like to be told it was actually true. This is what my life will be.
As I re-read the post below I got emotional. The words I wrote here over two years ago are still so true for me. This post captures my fervent wish to document my thoughts and feelings for my children. I still feel a strong desire to be understood. Perhaps some of this is because I think in many cases people with cancer do not feel understood.
Katie and I became friends after I read her book. Great friends. We talk about Suzy. We talk about french fries and silly socks and Pilates. We talk about her work and we talk about our kids. We talk about cancer. We talk about the most frivolous parts of life and the most serious. As I write below, “Even after her death, Suzy has the lovely ability to inspire, to entertain, to be present.” In life, so does her daughter, Katie.
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 in June, 2005 from lung cancer. In an attempt to assemble 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, 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 cancer can return 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 originally had 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 in a 2009 car crash. 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 so 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.