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Writings on metastatic breast cancer, grief & loss, life, and family.
January 10th, 2010 § Comments Off
To read an individual post and its comments, click on the post title. Otherwise, you may read posts in an uninterrupted stream here. To leave a comment click “leave a reply” under each post. Thank you for reading!
May 15th, 2013 § 34 comments
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 § 17 comments
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).
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 § 17 comments
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 21st, 2013 § 25 comments
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.1 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 § 50 comments
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 9th, 2013 § 25 comments
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 § 61 comments
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!
April 2nd, 2013 § 8 comments
It’s been a wonderful but long few days. I was so run down yesterday that after our egg hunt I got into bed and pretty much didn’t get out for 9 hours. Tristan’s birthday was absolutely delightful. We held a birthday party, something he’s never had before. We’re not big on parties in our family; instead, we always have small family celebrations.
One year, Tristan was at Shriners Hospital for Children on his birthday having hand reconstruction surgery. When the surgeon you want has an opening in his schedule, you don’t say no because it’s your four year-old’s birthday.
When we’ve done parties it’s been my tradition to have a no-presents party. Our children get presents from us and close friends. Party guests, however, are not allowed to bring them (it’s fascinating to me how many people have a difficult time following this rule). Instead, they’re asked to bring the money they would have spent on a gift and donate it to charity (we designate Shriners Hospital for Children). Each party we’ve had in the past has raised at least $500. Paige has had two or three parties through the years, Colin has had two. In those particular years they got the party, cake, and presents from family members. This was more than enough.
We put a donation box out at the party and everyone can stuff the box. This year Paige wrapped and decorated the shoebox. The children who are bringing the donations also get a lesson in the joy of giving to others. Often the parents tell me that their children don’t understand why they can’t bring a present. That’s okay with me, I think it’s fine to force a discussion about giving to those in need. My children take pride in doing something good, and even when they are young and want to know why guests can’t bring gifts, I feel no guilt in explaining that not all children can afford to pay for the operations they need. When parents say to me, “Oh, I would love to do that but I don’t know how my child would respond,” I never quite understand that. It’s our jobs as parents to be role models, to show our children what’s important.
When I had my own 40th birthday party a few years ago I did the same thing I have my children do: I asked guests to bring donations to charity in place of a gift. We must be willing to do ourselves what we ask of our children.
Shriners Hospitals provides care regardless of financial situation with an emphasis on orthopaedic care, spinal cord injuries, and burns. Tristan’s complex hand reconstruction helped him tremendously, he was able to have 3 procedures at the same time (a tendon transfer, a z-plasty to widen the web space, and a ligament tightening at the base of his thumb). Should he need cervical fusion surgery for the hemivertebrae and malformations in his neck that is where we will go (I’ve written elsewhere about Tristan’s congenital deformities in his spine and left hand). The team in Philadelphia including Dr. Randal Betz, Dr. Scott Kozin and physician’s assistant extraordinaire Janet Cerrone are very special to us.
Invitations and stickers from Easton Place Designs and the most adorable cookies from One Tough Cookie helped to make the day special. Tristan loved his karate party, and I love that I’ll be sending a big envelope to Shriners Hospital in Philadelphia from Tristan. I am so grateful to the families who helped to make this birthday so special for Tristan. I thank them on behalf of the children who will benefit from their generosity. Everyone does what’s right for them. This type of birthday celebration is what feels right to me.
In case you missed it, Seth Mnookin had a great piece on Slate about the Time magazine cover about cancer. He and I had a great talk about this and I’m quoted briefly in the piece. You can read it here.
** Also, a reminder I’ll be on Doctor Radio (SiriusXM channel 81) this Wednesday, April 3rd at 1 PM EST on the Oncology Show. You can check the schedule here, and it does repeat a few times during the week. I am going to try to get an audio file for those of you interested in listening who won’t have access to it live. The topic? One of the most popular here on the blog: how to talk to people with cancer in a sensitive and caring way.
March 28th, 2013 § 39 comments
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 § 26 comments
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 § 13 comments
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 § 25 comments
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 § 20 comments
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.
March 7th, 2013 § 25 comments
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.1
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 § 1 comment
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 § 19 comments
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 § 7 comments
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.
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 § 150 comments
“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 § 5 comments
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 § 24 comments
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.1
February 15th, 2013 § 27 comments
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 § 16 comments
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 § 7 comments
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 § 4 comments
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 § 5 comments
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 29th, 2013 § 8 comments
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 § 15 comments
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.
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 § 1 comment
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 § 3 comments
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 § 15 comments
Perhaps the most common question I get asked by email is, “Someone I know has been diagnosed with cancer. What can I do?” Today I offer one suggestion. I believe this would make a wonderful gift for someone who has just been diagnosed and is a necessity if you are the patient.
Being organized is one of the best ways to help yourself once you’ve been diagnosed. When you first hear the words, “You have cancer” your head starts to swim. Everything gets foggy, you have to keep convincing yourself it’s true.
But almost immediately decisions need to be made — decisions about doctors, treatments, and surgeries. Often these choices must be made under time constraints. You may be seeing many different doctors for consultations. Medical oncologists, surgical oncologists, radiation oncologists, recontructive surgeons, internists— there are many different voices that you may hear, and they may be conflicting. It’s hard to keep it all straight in the midst of the emotional news. Not only are you likely to be scared, but also you are suddenly thrust into a world with a whole new vocabulary. By the time you are done with it, you will feel you have mastered a second language.
You can help your care and treatment by being organized. Especially if you are juggling different specialists and different medical facilities, you must remember that the common factor in all of this is you. It’s your health. It’s your life. I believe it’s important to travel with a binder of information about your medical history and treatment, as well as notes and questions.
This binder will mean that all of your information about your cancer will be in one place. This will be your resource guide. I cannot tell you how many times physicians have asked about my binder and said when I was able to produce test results, pathology reports, or other information they needed, “I wish every patient had one of those.”
I suggest the following:
A heavy 3-ring binder
I think a 1.5″ binder is a good size to start. This size will allow you to easily access reports and pages and have room for the calendar. It will look big at first but you won’t believe how quickly you will fill it up.
Colored tab dividers
I like these to be erasable. I think 8 is the minimum number you will need. If you have a lot of specialists you will need more. The categories you think you will need at the outset may change. It’s easy to erase and reorganize them. Put the categories you will be accessing the most in the front so you aren’t always having to flip to the back. Once the binder is full it will make a difference.
Some starting categories:
Loose leaf paper
Perfect for note-taking at appointments, jotting down questions you have for each doctor. You can file them in the approporiate category so when you arrive at a doctor your questions are all in one place.
Business card pages
These are one of my best ideas. At every doctor’s office, ask for a business card.Keep a card from every doctor you visit even if you ultimately decide not to return to them. If you have had any consultation or bloodwork there, you should have a card. That way, you will always have contact information when filling out forms at each doctor’s office. For hospitals, get cards from the radiology department and medical records department so if you need to contact them you will have it. Also, you want contact information for all pathology departments that have seen slides from any biopsy you have had. You may need to contact them to have your slides sent out for a second opinion.
This is also a good place to keep your appointment reminder cards.
At CT, MRI or other imaging tests, ask them to burn a CD for your records. Hospitals are used to making copies for patients these days and often don’t charge for it. Keep one copy for yourself of each test that you do not give away. If you need a copy to bring to a physician, get an extra made, don’t give yours up. If you need to get it from medical records from the hospital, do that. You want to know you always have a copy of these images.
Keep a copy of most recent bloodwork (especially during chemo), operative notes from your surgeries (you usually have to ask for these), pathology reports, and radiology reports of interpretations of any test (MRI, CT, mammogram, etc.) you may have had. Pathology reports are vital.
I suggest a 3-hole calendar to keep in your binder. This will serve not only to keep all of your appointments in one place but also allow you to put reminders of when you need to have follow-up visits. Sometimes doctor’s offices do not have their schedules set 3, 6, or 12 months in advance. You can put a reminder notice to yourself in the appropriate month to call ahead to check/schedule the appointment.
Similarly you can document when you had certain tests (mammograms, bone density, bloodwork) so you will have the date available. I usually keep a piece of lined paper in the “scheduling” section of my binder that lists by month and year every test/appointment that is due and also every test I’ve had and when I had it.
Sticky note tabs
These can be used to easily identify important papers that you will refer to often, including diagnosis and pathology. These stick on the side of the page and can be removed easily. As your binder fills up, they can be very helpful to identify your most recent bloodwork, for example.
Plastic folder sleeves
These are clear plastic sleeves that you access from the top. They can be useful for storing prescriptions or small notes that your doctor may give you. The sleeves make them easy to see/find and you won’t lose the small slips of paper. Also a good place to store any lab orders that might be given to you ahead of time.
The above suggestions are a good working start to being organized during your cancer treatment. If you want to do something for a friend who is newly diagnosed, go out and buy the supplies, organize the binder and give it to your friend. He or she will most likely appreciate being given a ready-made tool to use in the difficult days ahead.
I also believe a modified version is equally useful for diagnoses other than cancer. When our youngest son was born with defects in his spine and hands it took many specialists and lots of tests to get a correct diagnosis. Having all of his tests and papers in a binder like this was instrumental in keeping his care coordinated. In fact, at his first surgery at The Children’s Hospital of Pennsylvania they gave us a binder to assist in this process. I know some hospitals do this for newly diagnosed patients already. Maybe my tips will help you or a friend know how to better use the one you already have. You may not need all of these elements depending on the complexity of your case, but I hope you will find some of these suggestions useful.
January 23rd, 2013 § 11 comments
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 § 8 comments
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.1 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 § 46 comments
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 § 12 comments
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 § 25 comments
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 15th, 2013 § 5 comments
One of the things that still astounds me about grief is how it only takes a moment to be jerked back into its grasp, even years after a loved one has died. It still happens to me with Barbara. I’m going along, minding my own business, and I see something, hear something, touch something and it reminds me of her. And it hurts just as much as it did three years ago.
Our senses betray us, provide the conduit to those places in our memory we think are closed and safe. I’m not sure I’ll ever be safe. I think we stay vulnerable, sensitive, fragile. That’s what happens when you really love someone.
October 6, 2009
The moments catch me off-guard,
like my brother used to do
when we were kids.
He’d lay in wait
around the corner
in the hallway upstairs,
behind the jog in the corridor
outside my bedroom.
He would leap out,
and I would scream
That’s what these moments do:
they make me
Last night it was Paige,
with her round angelic face,
eyes pink with tears bursting,
coming into the kitchen while I was on the phone with my parents.
“I went to the computer…
to send some email to some friends…
and all of the emails from her are there…
there’s just a whole list of emails from her there…
it just says ‘Barbara Adams’ the whole way down…
and I just keep thinking how she’s never going to write me back…”
And so we cried.
And we talked.
I was cleaning the kitchen,
packing up backpacks,
doing things I thought were “safe.”
I thought I would be protected from
I opened Colin’s green homework folder and
put in his math assignment.
A sheet was already inside the folder,
a red squiggly crayon line decorating one edge.
I pulled out the paper with reckless abandon,
expecting an innocent scribble,
a wasted silly drawing.
But instead, it was a piece of writing paper.
On it, neatly printed in his finest handwriting,
it said, “Bye-Bye Grandma”
and there was a tombstone shape in the middle
that said “Barbara Adams 2009.”
There were green zig zags on the top and bottom,
red squiggles on the left and right,
bright colors all around.
I wasn’t ready for it.
I didn’t know it was there,
in the shadows,
coiled to take advantage when I dropped my guard,
waiting for me to be vulnerable.
And so I acted just like I did when I was a
child and my brother scared me.
And I cried.
I vowed not to let my guard down like that
I love you, Paige.
I love you, Colin.
I love that you loved your Grandma so much.
I loved her too.
I miss her too.
And my hurt may dull a bit,
but it’s never going to go away,
because some of my hurt is for you.
It hurts not only that I don’t have Grandma in my life,
but also that you don’t.
And that’s what makes me cry the most,
because I know how much she loved you both,
and little Tristan too.
we’ll have to explain to him just how special she was
and how much she loved him
and all of the the special things she did to show it.
Thinking about the fact that she’s not going to be here to
show him for herself just breaks my heart…
It makes me want to
January 14th, 2013 § 5 comments
Today’s post is not about cancer. This post, about grief, still affects me every time I read it. I am hoping that those of you new to the site are finding this month of re-posts to be a good introduction to my writing. Hopefully it’s allowing you to see some of the life experiences that have gotten me to where I am. It’s been very interesting for me to go back and re-examine so much of my writing through this new lens of metastatic cancer.
This post was written the day after my beloved mother-in-law’s sudden death in a car crash.
Written September 17, 2009
She went up to bed tonight,
Still pink-eyed and shaky.
Finally calmed enough to hopefully get some rest.
And as she walked into her room,
From beneath her bed,
The bright kaleidoscope patterned paper
Caught her eye.
I heard the sobs,
“My birthday present.
The one she gave me early.”
She stood pointing at it,
Like a child pointing at a dead
Animal in the middle of the road.
Together we looked.
And then all at once it hit me.
I knew what she was talking about.
Two weeks ago,
When my in-laws were visiting,
Paige’s grandmother had given her a wrapped box
“This is for your birthday.
Put it somewhere safe.
Don’t open it until October 28th.
I know it’s something you’ll like,
But you have to wait until then,
Because that’s the kind of 10-year old she is,
Paige didn’t peek,
Or lift the corner of the paper,
Or ask her brother what was in it.
She carefully put it under her bed
To wait until October.
We had no way of knowing we’d never see Grandma again.
No way of knowing that was the last present that would be bought.
No way of knowing that a truck which had no business trying to pass anyone,
Much less several vehicles at once,
Would slam head-on into my in-laws’ car and kill our loved one.
The very sight of the box,
And the thought of its giver,
Brought her to tears,
Racked her with sobs,
Riddled her with grief,
Filled her with anger,
And did the very same
January 13th, 2013 § 3 comments
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 § 4 comments
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 § 9 comments
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 § 19 comments
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 8th, 2013 § 6 comments
“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 § 11 comments
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.
January 6th, 2013 § 8 comments
I love books. I love reading. I love the power of words to transport us, change us, connect us.
One author I admire in every way — personally and professionally — is Dani Shapiro. This post from 2011 doesn’t talk about the details of her latest book Devotion, but I still want to repost it not only to encourage you to read the book for yourself but also because I think it’s intersting to think about how we interact with what we read. Dani has a new book coming out called Still Writing. There isn’t anyone to me who can capture the art of writing the way she can.
I’m not the kind of person who reads books twice. My husband wears down the fibers in the covers of some of his books, corners frayed by his hands as he holds and bends the written pages. Me? I barely have enough time to read a book once. My attention span is short, my free time small. With three children and a house to take care of there just doesn’t seem to be time to do everything I want.
This morning I awoke knowing what I wanted to do. I wanted to re-read sections of Dani Shapiro‘s second memoir, Devotion. About twenty pages into it I realized I was literally itching to do something: write in the book. I hadn’t allowed myself to do that the first time. Lately I had felt that my books (especially ones written by people I knew in person or on Twitter, even moreso if signed by the author) should remain pristine. I have eschewed e-readers in every form for this very reason… typing notes in margins is not as satisfying as using colored ink to have my interactive conversation with the author. Sometimes exclamation points or “YES!” will interrupt the creamy expanse of the margin, but more often than that my graduate school training has led me to issue challenges to the author. Questions that start with “But what about…” or the challenging, “Does not take into account…” are what you will find in my books. As I try to process what the author says I imagine I am conversing with them. And, in fact, I am; writers write to start a conversation with the reader. If all the reader does is absorb without processing I think the author might be disappointed.
As I started Dani’s book this morning I realized the pristine condition of my hardcover was getting in my way. I needed to interact with it to really get the full benefit of her words. It seems the right thing to do. Only pages in to this second time through, I was already finding questions I want to ask her. I was, after all, a different person by my second reading. I was coming to the book with more experiences, different concerns and thoughts than I previously had. I came to the book with many of the same questions Dani herself was seeking to answer when she started writing. I realized that in the same way she had made sense of what happened to her by writing, I needed to do that too. Writing in the margins was my microcosm of that experience; without “talking back” I had missed a lot of the beauty and significance of her words.
I already feel myself digesting her words in a different way. The same way I cannot experience major events in my life without writing I realized this morning I cannot make sense of words without reacting. As my memory has declined and my mental capacities have suffered over the past few years I can’t rely on them to retain the memories of the sentences and paragraphs that have spoken to me. I need to wrestle with them, tease them out, formulate responses.
My book will be riddled with ink by the time I am done. But I realized today that is precisely as it should be. I think Dani would like that. I think it means I’m learning.
January 5th, 2013 § 10 comments
From June, 2009. I’ve been thinking about writing a new post about the word “inspirational” for a few weeks now. I am sure I will someday soon. For now, I want to share this post from a few years ago that a few people mentioned as one of their favorites. Of course some things have changed since then. I need to think about some of the things I’ve said here.
But I do still believe in setting an example.
I still believe in doing my best.
I still believe in doing as much as I can for as long as I can.
What does it mean to “be an inspiration”? A few people have said that to me recently: I am an inspiration. At first I laugh. I guess I’m an inspiration because I’m still alive. Maybe that’s enough.
What’s inspirational about me? Trust me, I’m not searching for platitudes here. I’m trying to get at “what makes someone an inspiration” and why do people think I and so many other breast cancer survivors qualify? There’s definitely more than one day’s blog in this question.
Is it being a mother and worrying about your children more than yourself? No. That’s what every mother does.
Is it summoning strength to confront chemo when it’s your greatest fear?
Is it putting a smile on your face when you are crumbling inside?
Is it speaking the words, “I have cancer” to your children, your friends, your husband, your parents, your in-laws, your brother, and all of the people in your life enough times that eventually it starts to sound normal?
Is “inspirational” when you offer to show your post-mastectomy body to women so that they will know the results just aren’t as scary as they are thinking they will be?
Is it answering everything and anything people want to know?
Is it putting words and feelings in black on a white page?
The essence of inspiration is being strong.
When you least want to be.
When you are faking it.
When you lack it.
When you have to dig deep for it.
When your kids need dinner and you want to vomit from the chemo.
When you are too weak to climb the stairs.
And you don’t think you can get through another day.
And you just want the pain to end.
Just have it go away.
When your pride is gone.
Dignity is gone.
All of it.
Being inspirational means being tough.
It means feeling rotten but not wanting others to.
It means wanting to put others at ease with how you are doing.
It means being a lightning rod for everything bad.
A catalyst for everything good.
It means telling your parents you feel okay when you don’t.
A little fib so they will go home and get some rest for the week.
Take some time off for themselves before they come back in 8 days and do it all over again.
A break so they don’t have to see their little girl suffer anymore.
Because 6 days in a row is enough.
Because looking good makes others feel better about how you are doing.
So you put makeup on.
And dress well.
And put a big smile on your face.
So they will think you are feeling good.
And when you switch the topic of conversation, they will go along with it–
They will believe you when you say you are feeling better.
Okay, so maybe I am inspirational. I don’t call it inspirational. I can only admit to the smaller things. The micro things. Inspirational sounds big. Important. It’s hard to accept that one.
But I think I’m convinced.
The reason I’m going to finally concede is that I just realized something:
That was my goal.
Except I wasn’t calling it inspiration.
I was just calling it doing it right.
I was calling it setting an example.
I was trying to show my family, especially my daughter, how you can tackle an obstacle– a big one.
I was just doing my job.