*Blog* | Lisa Bonchek Adams

1/3/13 Colin turns 11

January 3rd, 2013 § 19 comments

Today my son Colin turns 11. All of the usual things go along with that: cupcakes, presents, hugs, reminiscing. As I looked back at the pictures of me, pregnant with him, I just can’t believe how the time has gone. Clichés are clichés because they’re true: the years go by faster and faster.

Christmas of 2001 was spent in New York City awaiting Colin’s imminent arrival. I was so huge and uncomfortable that I couldn’t get around too well. I was sure that baby’s head which felt like it was between my knees was going to emerge any second. Christmas came and went. As New Year’s approached I begged my obstetrician to induce me. Colin wasn’t due until January 10th but it was clear he was “fully cooked.” And big.

I called my parents and told them to come to the city. I just knew I wasn’t going to go much longer, and wanted backup so we could go straight to the hospital without worrying about Paige, then 3.

The morning of the 3rd of January Clarke was getting ready for work, staying home slightly later than usual after the holiday. I awakened feeling a bit off. I told him so. He lingered more, wondering if this would be the day. Shortly after 9 a.m. I said the contractions were starting. Only a few minutes apart. We called the garage for our car, but within 20 minutes the contractions were fast and furious. Out the door we went, got a cab, and started the 20 blocks to the hospital. By the time we got there I was in agony. Already a few centimeters dilated for the last 2 weeks, I knew there wouldn’t be much time.

After some (only funny now that it’s over) problems with an IV, a new nurse, and a whole lot of painful yelling on my part, I finally got into a delivery room. The nurses sent Clarke out as they prepped me for the epidural (with all of my yelling, they probably wanted to give me general anesthesia to shut me up… I was not doing well with the contractions). As I bent over for the anesthesiologist to get the epidural in my back, I could feel it… this kid was on his way out, nothing I could do about it. I sat up, yelled, “He’s coming!” as they sort of shook their heads, thinking they had time.

A nurse saw Colin clearly on his way into the world, and ran down the hall for Clarke, who had gone to the pay phone to check voice mail (pre-cell phone days). They both came running in, just as Colin came out. Literally 10 more seconds and Clarke would have missed the birth of his son. I would have loved that epidural.

He takes the cake for my most dramatic birth of the three children. At least after him, they agreed to induce my third, knowing I’d never make it the fifteen miles to the hospital here in Connecticut.

With the fullest head of black hair and 8 pounds, 13 ounces of bulk, Colin looked huge. And old. And that never changed. He was 20 pounds by four months. And always tall.

He was a challenging toddler (that’s code for “pain in the neck”) but grew into a lovely boy. He still is. He’s an athlete and quick learner with zeal for trivia and memorizing facts. He’s a caring and protective big brother and a loving football and ESPN-watching companion for his father.

I never thought I could have a son. I thought I would only do well raising girls. When Colin was born I knew we’d have to figure it out together. I can throw a football with some semblance of a spiral. I am getting used to a child who wants to wear sweatpants most days. Who forgets to lift the toilet seat sometimes. Who takes off dirty clothes and drops them on the floor.

But that boy of mine lights up my heart. His smile is spectacular. His giggle is infectious. He recently decided to grow his hair from the crewcut he’s had since he was a toddler. He’s a big kid, dwarfing most in his grade. His heart and his mind are just as large. I hope he knows just how much we love him, and how proud we are of him. Someday he’ll read this and hear it again. The words I say to him often will be here for him to read whenever he wants.

Happy 11th birthday, Colin. I love you and am so proud of who you are. You are smart and funny and caring and loving. You are a fabulous big brother to Tristan, an adoring younger brother to Paige, and an integral part of this family. Your “sidling” hugs make me laugh every time. You cheer me with your guitar-playing and I love to watch you play tennis. Math is your favorite subject and you have your father’s easygoing disposition. I just adore you. I can’t wait to see what you are going to do with your charming self when you grow up. You make my heart soar.

You made quite an entrance into this world. I hope you similarly make the world take notice as you grow.

Day 3: A bookmarked life

January 3rd, 2013 § 1 comment

I return to this image again and again: a bookmarked life. This brief post is from May, 2011.

……………………..

One of the defining features of childhood is innocence.
As children we don’t realize that things change. We think the way that things are when we go to bed at night is the way they will be in the morning. We put the bookmark in our lives and expect everything to be the same when we return to it.

Of course, as we grow we realize that’s not true.
That it can’t be true.
That’s not how things happen.
That’s not the way the world works.

And what do we say when someone still believes it? We say he is being childish.

Often times I wish I could retreat to childhood. Not because of how my childhood was, but because I want to recapture that mindset, the one that says that everything is going to be all right. When people tell me “everything is going to be fine” I snort. I recoil. I don’t believe them.

It’s not always going to be all right.
Sometimes it is. Sometimes it isn’t.
But the road you must take to figure it out might break you before you ever find out for sure.

The hard truth

January 3rd, 2013 § 11 comments

I’m constantly haunted and angered by the language we use with cancer. I woke up in the middle of the night last night and this is what was in my head. I feel the need to caution: please don’t over-interpret this post: my health status has not changed. I’m not stopping chemo or any such thing. I’ve had a few acquaintances die of cancer this month and that’s where this is coming from.
…………………….

People die of cancer every day.

Do you think they didn’t try hard?
Keep their chins up?
Think positive?
Stay strong?
Do their best?

They did.
But it wasn’t enough.
There is no consolation.
Sometimes there is no “getting better” or
“Kicking cancer’s ass.”
Sometimes there isn’t anything else to do but accept the finality.

That’s not giving up,
That’s accepting what is.

Day 2: These things are not tied with a pink ribbon

January 2nd, 2013 § 6 comments

When I originally wrote this I tried to think about awareness and what it means to me. I wanted to explain why pink ribbons didn’t mean awareness; I wanted to capture the emotional side of this disease. Readers consistently cite this as one of their favorite pieces. It’s one of mine, too.

Of course some of the things I say here are a bit outdated now that my cancer is Stage IV. But I will leave the words as they are. I still think we are a long way from true awareness. It’s one of the reasons I continue to write.

…………………………………………………..

I wish I had the energy of my youth.
I wish I had the body.
I wish I had the fearlessness, the spunk, the drive.

I wish I could have a conversation with that young girl,
bright-eyed and full of wonder.
I wish I could tell her what lay ahead.

I wish I could tell her to gather strength, and wisdom, and patience like a squirrel gathering acorns for the winter.
“Save those things up,” I’d say, “you are going to need them… every last bit.”
I wish I could share the perspective I’ve gained along with all of the love.

But I can’t go back to that time,
I can’t go back to that place.
I can’t rewrite what’s happened,
I can’t do it all again.

I guess I must have done something right along the way for when it came time to fight I did,
and I did it well.
But that struggle took its toll on me and I am quite sure I will never, ever be the same.

You tell yourself “they’re only breasts.”
You say, “I don’t need ovaries, I’m done having children.”
But that obscures the truth.
The truth is that it does matter,
they do matter.
They say my uterus is atrophied.
It almost sounds funny when you say it.

“Who cares? What does that matter?”
It does. It does. It does.
To get rid of all hormones gives me a better chance at avoiding a recurrence, but there is a price to be paid.
No estrogen matters more than I ever thought it could.

It feels worse than taking injections to suppress my ovaries, worse than taking Tamoxifen. Those were easy. I had no clue what was ahead.

I wear the skirt, I put the makeup on, I walk the walk.
But I do not feel like a woman anymore.
I’m proud of what this body has done for me:
3 beautiful children,
surviving cancer,
healing the broken bones, the infections, the autoimmune diseases.
There is no week without migraines,
no cold winter day without icy implants.

Beneath the pretty lies ugly,
the ugly truth of cancer
and what it has taken from me.

While some may be able to go on,
move on,
forget,
I cannot.
My body will not let me.

These things are not tied with a pink ribbon.

These things last longer than a month.
This is part of awareness.

This is part of what breast cancer can do.
This is what it has done to me.

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Day 1: Cancer is not a gift

January 1st, 2013 § 20 comments

I’ve decided rather than just post a top 10 list of readers’ favorite posts, the ones they want to read again, I will be posting the most-requested pieces each day in January. I will still be writing new material; on those days two posts may go out. There is so much material here that most new readers haven’t seen, and I’d love to start the new year off by sharing some of it with them. Readers who’ve been here from the beginning tell me they welcome the opportunity to re-read some of the old work, so I’ll trust them on that since most of my pieces are short. I’ll make a list of the top pieces with hyperlinks so you will be able to easily find them in the future from the website home page.

I do say that it’s very interesting for me to go back and read these knowing that my life has taken a turn since many were written. I wrote them during/after my initial treatment for cancer. Recurrence and/or metastasis was “just” a fear. That fear was real. It motivated me to act a certain way about my health and my life. Those acts obviously weren’t enough because here I am with Stage IV. But make no mistake, the fear of metastasis bears no earthly relationship to the fear that you have when you are told you actually have it, are living with it, are dying with it. No relation at all.

I’ve thought about revising some of the pieces to reflect my new health status but decided not to. They were my truth at the time. My reality now is different, and I document it accordingly.

I’d love to hear your comments as always… It’s been truly gratifying to see how much more response there is now and your willingness to comment and share your reactions to the pieces. Thank you for supporting me in 2012 and let’s see what 2013 brings. I’ll be writing my way through it.

This is one of the most requested pieces. Yes, I really do know people who utter the words, “Cancer is a gift.” And I still am baffled by that statement. The following post, “Cancer is not a gift” was originally written in 2009 and is a response to one such person.

………………………………..
I have a friend who says that “cancer has been her gift.”
She says that it’s been the best thing that’s ever happened to her.

That perspective doesn’t suit me. Despite being optimistic and determined, I am a realist. I see the ugly warts.

I don’t think it’s the best thing that’s ever happened to me; in fact, I wouldn’t wish it on anyone.

A gift is something you want to share.
Something you want to give to someone else.
Something you say “Next time I need to give a special gift to show someone I care, this is what I want to give.”
Cancer is not that thing.

Language matters.
The words we use to describe illness, death, and emotion are important– we should choose them carefully.

Cancer is not a gift:
It’s what you get.
It’s what I got.
It’s a twist of fate.
A happenstance.
A piece of bad luck.

But once you’ve got it, you have to decide what you’re going to do with it.
You can’t give it away, so you might as well make the best of it.
Fortunately, some good comes with it too.
And one of the best parts is the people you will meet.

Just because you don’t think it’s the best thing,
or a good thing,
doesn’t mean you are a negative person
or a bad person
or any particular kind of person.

In fact, it may mean you are a realistic person.

It may mean you are having a bad day.
Or a good day.
Or just a day.

And you will have those days:
Good
Bad
High
Low
Carefree
Despondent
Manic
Depressed
Terrified
Numb
Grateful
Spiteful
Bewildering
Confused
Overwhelmed
Sleepwalking
Drained
Energized
Proud
Embarrassed
And everything in between.

The days are gifts.
You can celebrate the days.
You should celebrate the days.
But don’t celebrate the disease.
Don’t treat it like a prize.

You are the prize.
You are doing the work.
You get the credit.

You look great; you’d never know

December 30th, 2012 § 52 comments

It’s true:
you’d never know.

I look great. I look healthy. I’m not gaunt or drawn or pale.
I wear makeup most days, and some days I ever wear boots with a heel on them.

I smile, I laugh.
I take a slight jog up the front hall steps when I feel like it.
I crack jokes, I roll my eyes when standing in a long line, I gossip with my friends.

I wear gloves a lot, I have to moisturize my feet and hands at least a dozen times a day.
I buff my feet, I examine them for cracks and bleeding. I stick ice packs on them when they burn from the chemo.
I can’t feel my fingertips, yet portions of them crack and peel and are painful and raw.
I can’t hold a pen or twist off a bottle cap.
I take pills all day long.
I’m swollen, I’m tired, my mind can’t stop racing.

I tell time by “on” weeks and “off” ones.
Of course the doctors understand my situation.
They know what this diagnosis means.
Even ones that have nothing to do with cancer call to check on me.

When I go to my sons’ school some of the teachers and moms cry when they see me.
“You look good,” they say. This a compliment. Sometimes they say, “You don’t look sick at all. You’d never know.”
That is shorthand for, “You don’t look like you’re dying but we know you are.”

I hear people in line to buy holiday gifts complain about the sniffly cold they have or the poor night’s sleep their child had.
They might be complaining about something more serious, but still something that can be fixed.
Time will heal what ails them.
I am not so lucky.

I am jealous.
I am jealous that this is their only medical concern.
I’m not jealous of what they wear or the car they drive or the house they live in.
I’m jealous of their health status.

I’m not in denial. This diagnosis is a nightmare.
My life will always be full of chemo and side effects and worry and monitoring and drug refills and hospital visits.
But my life will also be full of great memories, of laughter, of smiles.
There will be tears. There will be pain. There will be heartache.
But there will also be joy, and grace, and friendship.

I don’t know for how long. I don’t know if they will be in equal measure.
They say I look good. They say, “You’d never know.”
For now I know it’s true.

There will come a day when it’s not true.
And they will lie.
And I will know it.
And someday, then, I will know the end is near.
But that day is not today.

Sometimes

December 27th, 2012 § 28 comments

Sometimes doing everything you can is not enough.
Sometimes your best isn’t good enough.
Sometimes things don’t work out the way you want.
Sometimes it just isn’t fair.

Sometimes the end comes too fast.
Sometimes time won’t slow down.
Sometimes your plans won’t happen.
Sometimes those dreams won’t come true.

Sometimes your life feels like a nightmare.
Sometimes nightmares happen in the day.
Sometimes uncertainty is a needy child that won’t leave your side.
Sometimes there isn’t enough strength.

Sometimes it’s more than you can handle.
Sometimes the end is near.
Sometimes there isn’t anything you can do.
Sometimes staying strong isn’t an option.

Sometimes a word or gesture or deed can bring you to tears.
Sometimes strangers show the kindness that should be shown by friends.
Sometimes you can’t see which way the road will go.
Sometimes all you can do is research, then close your eyes and guess.

Sometimes strength may look like denial;
Sometimes you must trick yourself to get through the day, or hour, or minute.
Sometimes the reality is so unfathomable you must push it aside.
Sometimes the pain is too great.

Sometimes people don’t understand.
Sometimes they make what’s hard even harder.
Sometimes the kindness of friends makes things bearable though,
Somehow the strength of love can keep you going for a while.

Sometimes you get lucky.
Sometimes you don’t.
Sometimes what happens has nothing to do with you.
But somewhere, deep in the darkness, you must hold out hope.

Give sorrow words: a guest post by Dr. Rita Bonchek on helping children understand death

December 22nd, 2012 § 6 comments

The following is a piece my mother wrote this week at my request. Dr. Rita Bonchek spent her career as a psychologist specializing in grief and loss. There is no one I know who is as insightful into the grief process as my mother. So much of the information I share here on this website was gleaned through years of listening to my mother talk about these subjects.

My mother gave me the gift of discussing difficult subjects with relative ease. I never could have known how they would come to play in my own life, most recently with the death of my mother-in-law in 2009 and my stage IV cancer diagnosis this October. She has written posts on this website about the difference between guilt and regret (here) and daughters mourning the death of their mothers (here).

We all will have experience with grief and loss. It’s a universal part of life and yet most people find themselves poorly equipped to handle the emotional and practical aspects of the death of a loved one.

After the killings in Newtown, Connecticut I asked my mom if she would be willing to write anything for me to post on my blog. I know so much has been published in the past eight days about children and their grief, but I have opted to give my readers the opportunity to read what she says. Sometimes different posts on the subject will resonate differently. I hope you will find helpful information here.

In Dr. Rita Bonchek’s words:

Helping children, especially the very young, to understand the death of a loved one is never an easy task. Not only do children’s perceptions of death include confusing images which lie between fantasy and fact (as when cartoon characters are killed and then recover instantly), but children’s vocabularies are inadequate to express their feelings and fears.

The following are suggestions to help you help your child:

1. If the death was unexpected, convey the facts in a straightforward way. Be sure to answer the who, what, why, when, and how questions. You will probably have to repeat the facts many times as your child struggles to understand what happened. If you want to check on what your child knows about the death, ask him or her to tell you what happened. Encourage your child to come to you or another designated adult when questions arise.

2. Talk about things your child has already noticed but might not understand (“You know I’ve been crying a lot. It isn’t anything you’ve done. Sometimes I think about Grandpa and I cry”).

3. Give your child permission to cry by modeling that behavior or by saying, “When I cry it makes me feel better.”

4. Use the word “died” and be sure the child understands the finality of death. One child said to his mother, “I know Daddy is dead but when is he coming home?” Children are unable to deal with euphemisms such as “eternal rest” or “We lost your uncle today.”

5. Be sure to convey the clear message that the death was not the child’s fault and there was nothing that he or she could have done. A child’s words, “I wish you would go away and never come back” or the the thought, “If I didn’t have a brother I could have all of the toys or all of Mom’s attention” do not cause a death.

6. If your child asks a question that you don’t know the answer to, say “I don’t know” or ask what the child thinks.

How a parent handles his or her own grief has a definite impact on how a child grieves. If a parent does not mention the death, avoids all discussion of the event, and/or removes pictures of the deceased, the child will easily follow these cues. You can’t protect a child from hurt or sadness by pretending nothing happened and hoping the child won’t notice. Children sense when something is wrong.

A child can also be overwhelmed by a parent’s excessive grief, which, unless it is given proper explanation, may serve as a source of insecurity or leave a child emotionally abandoned. If you cannot help your child to grieve, be sure someone is available to provide understanding, support, and information.

Parents cannot assume a child feels nothing about the death just because the “adult” forms of grieving are absent. Some children may quickly resume play activities which gives the appearance of not caring. Play may be an attempt to discharge anxiety, to distract one’s self, or to find relief from the sadness of thinking about the deceased.

Research has shown that children and adults grieve in different ways from each other. However both adults and children should abide by Shakespeare’s advice:

Give sorrow words; the grief that does not speak
Whispers the o’re fraught heart and bids it break.

Unresolved grief can interfere with a person’s ability to function. Those adults and children who can work through their grief and express their emotions openly will be stronger and better able to lead full and satisfying lives.

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Let’s do some blogpost list-making

December 22nd, 2012 § 23 comments

I’ve decided to compile some lists here for readers new and old but I need your help.

I thought it might help new readers if they had a landing point when they first get to the site. Old readers might find posts they’d missed or forgotten, or ones they liked that have earned a second read. That idea blossomed into thinking about posting a list of my own favorites, but realize you as readers might have your own.

As I spend the next few days working on this job, please comment below with nominations you have for which post was your favorite. You don’t have to limit it to one. You can list as many as you like. I’d love to know what “hit home” with you, which ones affected you, or educated you the most. I’ll take those and work them into my lists.

It also is a gift to me to see which ones resonated so much that weeks, months, years later you still remember them. I’d love to know. If there are suggestions for topics you’d like to see me write more about, I’ll take those too. Even if someone else has suggested it, please add your vote… I am trying to see which ones are the favorites.

I think this is a great end of year activity.

I appreciate your readership and input as always and can’t wait to see what you have to say. I’ll be back to you with lists (in some form or another as I see what comes in) by the end of the year.

I wish you all a healthy, happy 2013.

Lisa

Six years later: it’s not a miracle, it’s chemotherapy

December 20th, 2012 § 46 comments

Today marks the six year anniversary of the day I was first told I had breast cancer. When the radiologist told me the news, she also said she didn’t know exactly what it was or how bad it was.

This is why you do not schedule mammograms or biopsies right before a holiday. Especially Christmas. You’ll be going on vacation… and if you aren’t going on vacation, the doctors, nurses, and pathologists will.

I was told on December 20, 2006 that I almost certainly had cancer based on the mammogram and ultrasound images. I’d need a biopsy to confirm it. But they couldn’t do the biopsy until after the new year. It’s hard to hear, “We think you have cancer. Now go on your vacation and when you come back we’ll figure it all out.” Weeks later I was told I had extensive DCIS and would need to have my left breast removed. I opted to have a double mastectomy. A few weeks later a second look at the slides revealed I had some breast cancer in one of the lymph nodes that had been removed (I am now a big advocate for a second opinion on pathology). I was reclassified as having stage II breast cancer. I had chemotherapy; later, a salpingo-oophorectomy.

Almost six years later, I have now found out that I have stage IV (metastatic) breast cancer (details here).

Yesterday I went to an appointment with my local oncologist. I go to see him every two weeks right now to review bloodwork and to discuss dosing for the next round of chemotherapy which starts tonight.

The concept of “good news” has been completely redefined since my new diagnosis. There is no cure, so I can’t hope for that. There is never going to be a day I am not aware of running out of time. Now “good news” gets defined as stable disease. If you’re lucky, and the chemo is working, good news can even mean reduced disease. Now I hope for that.

I look at my oncologist’s face when he walks in the room. I scan it for signs of what kind of news day this will be. The day he told me about my metastasis I read his face. When he walked in that day I asked him how he was and he said, “Not good.” I assumed it was something about him, his family. I immediately starting worrying about the bad news he was going to tell me about someone else. But it was my bad news. It was my nightmare.

I never used the word cured. I never said it. And I don’t like when others do with my kind of cancer. I always prefer the technical terms NED (no evidence of disease) which means it may be there, but we can’t detect it with the tests we have done. I don’t even like the term “cancer-free” for my particular cancer… again, there might be cancer there, but just not enough to be detected or can’t be with the tools used.

Five years had come and came and gone. Even nurses in other specialties would say at my checkups, “Oh! Five years! That means you’re cured!” and when I’d explain to them that it actually didn’t mean that at all with my kind of breast cancer they would look at me quizzically.

“SEE?! I told you!” I want to go back to say to all of them. I was vigilant for a reason. It “shouldn’t” have happened based on the statistics, the predictions. But it did. And now the only life I’ve got is spent dealing with it.

……………..

I watched my oncologist’s face yesterday. We’ve had some bloodwork results in the last two months that have been a good first step but he hasn’t been willing to budge much on declaring that this chemo is working. One or two data points are not enough for either of us to feel confident, actually. But yesterday we got our fifth data point.

I still have metastatic cancer. That isn’t going to change.

But I have some news I can finally share: my bloodwork is showing “indisputably” (in the words of my doctor) that my cancer is shrinking. The chemo is working. The pills I’ve been swallowing, seven or eight a day for seven straight days at a time, in alternate weeks, are doing what we’d hoped. The cancer is still there. But it’s smaller. But it’s responding. It’s been consistently trending down since I started on Xeloda. Now, with more than a few data points, we can finally characterize the effect and I can share it publicly.

……………………….

So what does that mean? I know that’s the question most will ask. It simply means this is the chemo I stay on for now. It means that I just keep doing what I am doing. I’m not “cured” or “feeling better” or “cancer-free.”

It means that modern science and pharmaceuticals are giving me some time. For today, the cancer is responding, shrinking. And in the land of stage IV cancer, that’s unmitigated good news. Make no mistake, it’s no Christmas miracle. It’s not happening for any other reason than the fact that I am aggressively taking as strong a dose of this drug as I can tolerate, and it’s doing its thing.

Six years ago I went on Christmas vacation and feared for my life. I was scared and confused and miserable. Now, six years later I’m in a much worse place vis-a-vis cancer but my mindset is different.

I’m coming to terms with accepting the life I have — the one I thought I’d have is gone. I have created a new one. The best one I can.

For today, I celebrate the good news. I will go to my children’s school holiday parties. I will smile. I will make memories. I will not focus on side effects. I will find beauty in something small.

I will savor the things I can do today.

Saving a Life at the Stage Deli

December 17th, 2012 § 3 comments

My father had a story published in The New York Times Metropolitan Diary today (12/17/2012). I will be at Shriners Hospital with Tristan on Tuesday for his orthopaedic check so I’ll leave Dad’s story with you for your reading pleasure. Here is the link to the original story or you can read the text below.

………………………………..

Dear Diary:

As a heart surgeon, the closing of the Stage Deli reminds me of the annual meeting of the American Association for Thoracic Surgery in 1975.

Having grown up in Manhattan, I sought out the Stage Deli for lunch with a friend, also a cardiothoracic surgeon. In the midst of pastrami on rye, I noticed an older gent at the next table keel over. In front of his horrified wife, and long before 911, public defibrillators or E.M.T.s, my friend and I put him on the floor and began CPR. Someone called an ambulance, and – leaving our food behind – we desperately maintained CPR while the ambulance careened through the city streets to the then St. Clare’s Hospital on 51st Street.

As soon as we reached the emergency room and got the drugs into him that we needed, we were able to defibrillate his heart. It transpired that he was a tourist from California who arrested in the right place at the right time – in front of two cardiothoracic surgeons. We learned later that he recovered completely and lived 11 more years. (His wife sent greeting cards on each anniversary.)

Gratified, we returned hurriedly to the Stage Deli, where the customers who remained from the earlier episode were delighted with news of the outcome. TV camera crews were filming, and the event later made the nightly news, giving the Stage Deli considerable publicity. Fresh sandwiches were brought to us, and we felt – transiently – that we were being treated royally.

But we were brought down to earth when we went up to the cashier and learned that there is no such thing as a free lunch – at least not in New York. He offered us a 50 percent discount!

— Lawrence I. Bonchek, M.D.

Some differences in grieving styles between men and women

December 16th, 2012 § 17 comments

Yesterday a follower on Twitter wrote: I am interested to know what the differences are between grief of men and women.

I fired off a series of tweets. Each statement, 140 characters long or less, told one of the many important things I have learned through the years. My mother, as many of you know, spent her career as a psychologist specializing in grief and loss. One of my childhood memories is occasionally going to night school with Mom and sitting in the back of the classroom. I always loved the campus bookstore and was able to milk a few treats out of her along the way for behaving well while she attended class.

When she finished her dissertation I read it. It was an in-depth analysis of families who had experienced the death of a young child and what happened to the family dynamics after that tragic loss. I think her work in the 1980s was ahead of its time. Publishers were not interested in manuscripts about children and death. I still wish she had been able to share her insights with more people. Fortunately, she did (and still does) share her insights with me.

I understand that these are stereotypes, generalizations. I know that “not all men are like this.”

One way of dealing with grief is not better than the other, but realizing that there are differences (not only in adults, but also in children) in grief is important.

In general, women talk their way through grief. They need to process it by verbalizing their feelings. They want to talk about the child that has died. They want to relive memories, talk about what events will be missed in the future. Women often need to say the same thing, (re-hash) what happened; they are trying through words to make sense of act that doesn’t make sense.

In general, men do not want to do this. Most men do not like to talk grief out in the same manner. More often, men usually are focused on acts. On doing. On fixing things. The death can’t be fixed. They feel powerless and do not want to rehash same sadness. They are often more hesitant to seek counseling or support from others. “Talking won’t change what happened,” they might say, and therefore resist sharing.

If the death was of their own child, this difference can drive a wedge if the mother of the deceased child feels the father is not sharing her grief. She may not recognize that he is, just in a different way.

The mother may withdraw, feel her partner doesn’t understand or share her grief even though they are the ones closest to the loss and should therefore be united in their emotional devastation. She may be more emotional about the loss, crying a lot, for example. The man may be unsure how to respond to the displays.

The mother may feel the father wants to “move on” too fast after the death. Often this is interpreted as not caring, not loving. But that is not true, of course. The parents are each grieving, but in different ways.

There may be blame issues as well. Blame issues could mean, in the case of Newtown shootings, that on the morning of the death, the child had a cold. One parent said “s/he is okay to go to school” and other said no. Tragedy happened. “If only my spouse had listened to me” can easily spiral into “it was your fault.” If child died while in care of one parent, the blame negotiation can be a stumbling block between parents as well. “You should have been watching,” for example.

Finally, women more often want to use counterfactuals in times of crisis. Women frequently play the “what if” game as part of their talking through the loss, even if the death was not in their own family. “What if that had been our child?” “What if we had moved to that town last year when you switched jobs?” “What if that happened here?”

More often than not, men will say, “but it wasn’t/we didn’t” and stop. In most cases, men don’t want to indulge hypothetical discussions that spiral. They frequently have different processing styles.

These differences may come into play if a person seeks grief counseling. The counselor that is right for one person will not be the best fit for another. Finding a counselor who is aware of these differences and is more consistent with your own methods of working through grief will lead to a more successful outcome.

There is so much more to say on this topic. These differences don’t just apply to grief. I do think that they can help to explain some of the distance that a death in the family can create at fragile time. This may be one reason why families so often unravel after the death of a child. Family dynamics are necessarily thrown into turmoil and the surviving child/ren (if any) will find their role in the family may undergo significant change as well. Those issues will be material for another post.

I’d be interested to hear in the comments if you and your partner have different styles of coping, and whether you think these generalizations ring true. I’m tossing these ideas out there for you to consider in light of how we all have been thinking about the Newtown families this weekend.

Permissions slips: children grieve differently

December 15th, 2012 § 5 comments

I’m re-posting this piece today in light of the school shootings nearby in Newtown, Connecticut. I know there is a lot of material out there this weekend on children and grief, but I’d like to add mine as well. This post was originally written a few days after my mother-in-law, Barbara, was killed suddenly in a car crash in 2009. I think these observations apply now, too.

I will honor childhood today.

………………………………………………….

Children are different.
From adults.
From each other.

I had to give two of my children different directives this morning:
One I told, “It’s okay to be sad.”
One I told, “It’s okay to be happy.”

I needed to tell my 7 year-old son that it was okay to cry, to be sad, to miss his grandmother.
I miss her too.
And it’s okay to let your emotions show.
It doesn’t make you a sissy or a wimp.
What it does make you is a loving grandson.
A grieving boy.
A bereaved family member.

But my ten year-old daughter needed a different kind of permission slip today.
I sensed she needed permission to smile.
To laugh.
To be happy.
I needed to tell her that it was okay to forget for a moment.
Or two.
To forget for a few moments that Grandma died.
It’s okay to still enjoy life.
The life we have.
Grandma would want that.
I told her that Grandma loved her so much.
And was so proud of the person that she is.
I reminded her how Grandma’s last phone call here last Sunday was specifically to tell Paige how proud she was of her for walking in a breast cancer fundraiser with me.
It’s okay to still feel happiness.
And joy.
It’s okay to let that break through the sadness.

Children are different.
But they take their cues from us.
I know my children.
I know that this morning what they needed from me was a sign that it was okay for them to feel a range of emotions.
It’s healthy.
Because what we are living right now is tragic.
And confusing.
And sad.
And infuriating.

If it is all of those things for me,
It can only be all of those things and more
To my children.

Marking time in cancer

December 14th, 2012 § 34 comments

It has been ten weeks since I was diagnosed with stage IV breast cancer. After I was diagnosed the first time with cancer in 2006 I began to mark time in a new way.

The parent of a newborn starts with days, then weeks, then months and fractions thereof. “How old is the baby?” a parent is asked. “He’s 5 days old” or “11 and a half weeks old” or “16 months,” the reply will come. But when that child is a teenager no one will mark his age in days and half weeks and months. The importance of those fractions will fade. Once he’s got years under his belt their significance is muted.

Time now gets marked in rounds of chemo, time elapsed since diagnosis, months without disease progression. There’s always a mental countdown, a cognitive calculation going on.

I find myself obsessed with time in a new way, but also rapidly losing track of it. Granted, some may be chemobrain. I wonder now that I am on chemo for the rest of my life what it will mean to my brain. It’s a necessary evil, but concerning. The chemo that kills cancer cells is also killing brain cells. New evidence shows the reality of this condition, no longer a punchline or mere excuse for forgetfulness.

I always encourage people with cancer (and any illness) to keep a calendar of their treatment. There is so much to keep track of that having an easy reference point is good. When did you change doses of medications? when did you see certain side effect symptoms? Jotting them down in a calendar or noting them in a smartphone calendar can be helpful. Sometimes on paper, patterns will emerge.

Grief is such a wily companion. Like smoke it creeps into places when offered only the tiniest access point. Grieving the life we thought we’d have is important. It’s easy to say, “lives don’t always go the way we plan” but that undermines the emotional complexities of dealing with serious illness. Just because things don’t go as planned for many of us (most of us?!) doesn’t mean there isn’t a serious adjustment to make.

“Roll with the punches” and “live in the moment” are deceptively simple phrases of advice that are not only absurdly emotion-free but also easier said than done. More than once in the past few weeks I’ve challenged people whose best words of support have been to live in the moment. While I understand the ideology, and agree with the premise that we must enjoy the time we have, I defy anyone without a stage IV diagnosis to tell me that it’s the quality of your years, not the quantity of them. These are things that healthy people say. Yes, quality matters. None of us want to suffer. I don’t. But years count, too. “Living in the moment” can imply that the grief process should be squelched or has an expiration date. Anyone who has experienced grief knows there is no expiration date.

Of course none of us knows our future. Some people try to tell me they don’t know their future either; they could get hit by a bus tomorrow. I love the response that Jen Smith suggested, “Would you like to trade odds?”

Acceptance of reality must come. Dwelling on the dark side of diagnosis won’t lead anywhere productive if dwelling is the only thing one does. I think that is the real meaning behind the idea of focusing on today. The acceptance of reality does come. Of course, that’s complicated when what the reality of what one’s prognosis is unknown. I have quickly built up tolerance for discussing the most serious and unpleasant ramifications of my condition. I occasionally sleep through the night. But I don’t know how long it will take to wave goodbye to my children in the morning, or tuck them all in at night, or talk about the future without feeling pain with the joy.

I mark the time. I’m back to being someone who counts the months and weeks and days. Counting them, appreciating them, grieving them. All at once.

Update 12/12/2012 including Hand/Foot Syndrome, Xeloda & Celebrex

December 12th, 2012 § 16 comments

Tuesday’s visit with my oncologist at Sloan Kettering was informative, as always. However, the big question can’t be answered: what is the trajectory of my stage IV cancer?

There will be no answer to that for now.

We start with a chemo. We see (through bloodwork and PET scans) how the cancer responds. If it responds, I stay the course until the treatment stops working or the side effects become untenable or dangerous. There is no way to know how long that will be. Any particular chemo could be ineffective from the get-go. It could fail after months. It could fail after years. Then you go to the list of options and decide on a next chemo regimen. This decision is not always easy; you can’t know which one will be best for you. It is often educated guesswork at best. There can be many chemotherapy options and in the end, I will probably try many/all as each one eventually fails. I’ve talked to women who have gone through more than eight different chemos in the treatment of their metastases. One thing I know is that chemotherapy in one form or another will be a part of my life for the rest of my life.

There is also no way to know if you will tolerate a chemo regimen well. Side effects can be dangerous and variable. Sometimes side effects are serious enough that you must discontinue using a particular drug even if it’s effective in reducing the cancer. As you can imagine, this can be a heartbreaking proposition: find something that works but you are unable to take.

As you know from my last post I have been struggling with HFS (Hand/Foot Syndrome) from the current chemo, Xeloda. I had done some research and found some studies indicating that the selective COX-2 inhibitor and anti-inflammatory drug Celebrex has been used with some success in helping reduce the severity of HFS in patients taking Xeloda (and a few other specific chemos). I had reduced my daily dose of chemo from 4000 mg to 3500 mg for this 5th round (7 days on, 7 days off) to see if the HFS improved with a slightly lower dose. Of course it’s scary to reduce the dose of your chemo but I’ve tolerated the maximum dose for a good number of rounds. It’s normal to need to reduce the dose as time goes on.

My oncologist agreed that the Celebrex was a good thought and definitely might help the HFS. There are risk factors associated with the use of the drug but we both agree that it’s worth the small risk. So I am starting with 200 mg once a day to see how I tolerate the Celebrex and if a low dose helps I will stay with that. If needed, it can be increased to 200 mg twice a day. My hope is that the Celebrex helps the HFS and allows me to go back to the higher 4000 mg (8 pills) a day chemo dosing for the next round.

In the meantime I continue with frequent moisturizing of my hands and feet (at least 10 times a day) with a variety of lotions including shea butter, Eucerin, Aquaphor, and more. I stay away from water, do not apply heat on hands/feet, wear socks and soft shoes/slippers, and wear gloves as much as possible. My feet have been doing very well, my hands holding steady and actually do seem improved today. Here’s hoping!

I know this was a technical discussion today but I want to share it for other people in treatment who might be able to ask their doctors about Celebrex if they suffer from HFS with Xeloda. I also hope that the explanation of chemo and prognosis will be informative.

I continue to do as much as I can everyday and when people see me and say, “You’d never know what you’re going through right now,” I take it as a compliment. I was busy today with routine dentist and endocrinology appointments… you can’t ignore the rest of your body when you are treating cancer. Many other body systems will be affected by the cancer and chemo. My thyroid has been holding steady but shows signs of needing another medication adjustment. Bone treatments like the Zometa infusion I take can cause problems with jaw bones. It’s important to keep a watchful eye on your whole body and not use cancer as an excuse for ignoring routine checkups. That’s my loving nag for the day… stay vigilant with your healthcare appointments and thanks for all of your support.

Nightmares of one kind or another

December 10th, 2012 § 37 comments

I wake up in the middle of the night with a start:
Heart racing, breathing fast.
It was a dream, I soon realize. What I fear is not true.
The despair, the nightmare, the horror.

All of it was a creation of my mind.
In the dream I was searching for him.

He was gone.

He just disappeared.

My child jogged off into the woods, his identifiable gait

Seen from behind,

Tennis whites lit up the woods–

But where was his racquet?

I realize now in the dream he didn’t have it.

He ran off never to be seen again.

Did not get to his destination.

I searched. I could not find him.

I failed him.

I quickly erase the fiction from my mind,

It’s not true I tell myself:

It’s a dream.

Focus on something else.

It’s 12:56 AM.

My heart settles back to its rhythm

I hear the rain,

My children are safe in their beds.

I can relax now.

But ease does not come.

My fear is misplaced.

The nightmare still persists.

The reality is a different image.

There is a nightmare.

A waking one.

One that’s real and true, one I cannot shake off with time, or more sleep, or distraction.

My nightmare is loss, it is my children out of my grasp, it is separation.

I still fear all of those things.

But it is I who will wander off into the unknown

Leaving others behind

Waking in the middle of the night with only an image of me,

Fleeting,

As they search for me in vain.

I will be there, with them, but only in memories.

It will have to be enough.

But I know it won’t be.

After all,

This is what cancer nightmares are made of.

This is what grief does.

I cannot do more, be more, than I am right now.

But I can want more.

It is a parent’s prerogative.

I am greedy.

I make no apologies for wanting to see the things I want to see,

Wanting to share the things I want to share,

Wanting to live the life I want to live.

This is what I want.
This is what I hope.
This is what I dream.

Update 12/8/2012

December 8th, 2012 § 32 comments

I realized it’s time for an update… but confess I’ve started and stopped this one a few times. Somehow when things are going along somewhat easily it’s easy to do the updates.This is the first one I’ve had to discuss side effects and I hesitated a lot about what to write and whether to post it. I wasn’t sure about talking about these things lest they be seen as complaining. My goal has always been to educate and inform above all.

Friends on Twitter assured me that talking about the daily in and out of chemo treatment for metastatic cancer is important. Not only are they learning what it’s like, but it tells people what I’m dealing with and what activities might be hard for me on a daily basis. One Twitter follower also said that for those who have family members with this disease and might not be forthcoming with detailed information, some of these updates give them an idea of what it might be like for their loved ones. While treatments and surgeries vary so much, I thought this was an excellent point.

I also have decided to post this information because I know other metastatic patients will find it through search engines and maybe it will help them. So… I’ve opted to continue to share these things. It’s the reality of cancer. It’s the reality of MY cancer.

I’m struggling at the moment with Palmar/Plantar Erythrodysesthesia or Hand/Foot Syndrome (HFS). This is a common side effect of Xeloda, the chemo I am currently taking. In short, the capillaries in the hands and feet rupture and the chemotherapy spills into the extremities. Redness, swelling, burning, peeling, tenderness, numbness and tingling can accompany it. While it does not always start right away, once you’ve had a few rounds it’s likely to be a cumulative effect.

After receiving another monthly IV infusion of Zometa to strengthen my bones on Tuesday, I started a new round (#5 for those of you keeping track at home) on Thursday night, and had to decrease my dose slightly to deal with the HFS. Rather than 8 pills a day (4000 mg) I’m on 7 now. The hope is that the HFS will stay at its current level and not progress on this dose. This is what feet start to look like with HFS:

It can get much worse than this with blisters and ulcerations but mine is not at that stage. If it were to reach that point we’d have to stop chemo until it healed and then re-introduce it. Driving was one of the hardest things yesterday, the pressure from the steering wheel (or anything against my hands) was difficult to tolerate. I wear cushiony gloves most of the day now and follow all of the guidelines to keep it at a minimum. My hands are more sore and sensitive than my feet this week but not as red as my feet. Thankfully while I could not hold a pen during most of the day, I could still do some typing. A long-term side effect of this particular drug is the potential to lose your fingerprints. I see an episode of CSI coming on that one! An article about the difficulty traveling with such a condition appears here.

Loss of appetite continues to be an issue but my weight has stabilized after a 20 pound loss in the first 6 weeks. It’s weight I needed to take off anyway, actually. I must eat twice a day when I take chemo and once I start eating I usually do just fine. I do better eating in the evening. My blood counts remained fine even during the weight loss and my instructions have been to “keep doing what I’m doing.” The one thing I can’t do is exercise at the moment. Friction on my feet can exacerbate the HFS so for now it’s not happening. A soon as the rib in my shoulder heals I will be trying to get back to Pilates class.

I’ll be back at Sloan Kettering on Tuesday, 12/11 to meet with my oncologist. We’ll evaluate the HFS by then and talk about ways to help me deal with it and make me more comfortable. We will also then be talking about what dose I will take for my next round and also start talking about when my next PET scan will be.

That’s the update for now, I’m still doing everything I can and am out and about as much as possible. I still bring the kids to the bus in the morning and try to do errands like the grocery shopping as often as I can. I ask for help with things that really are tough on my hands like stuffing the holiday cards or doing laundry or dishes. Even small tasks give me a sense of accomplishment and normalcy so while the weather holds I continue to do them. Once ice and snow set in and my concerns about slips and falls and bone breakage rise I will get help with more of the outdoor things.

I’ll have more pieces coming out on HuffPo shortly; thank you all for the excitement and congratulations about that new venue. My piece about what to do as soon as you are diagnosed, especially in regard to children, will be the next one they post. After that I’m looking at writing on the topics of bravery/inspiration, the situation when people you barely know take your condition as seriously as if they were family members, and the story of how I found out I had metastatic cancer to begin with. If you have any topics you’d like to see a piece about leave a comment or email me via the contact form and I’ll definitely take it into consideration!

Thanks for all of the support this week.

The passenger

December 3rd, 2012 § 25 comments

A thermos of tomato soup sits in the cup holder.

Trees become a blur outside my window as we make our way across the Pike from Boston.

I take note of the wispy clouds in the azure sky.

Usually I can’t truly appreciate the view because I am the in the driver’s seat, focusing on the cars in front of me.

This Thanksgiving I am in the passenger seat.

I am the one handing items to our three children in the back.

I’ve given up a few things I am not so good at night now, things that take too much energy or cause pain.

I wear big sunglasses to shield me from the bright glare.

More than once on this trip they’ve hidden hot tears when a gentle song comes on the radio about love and missing someone you care about.

We talk about next year.

We talk about the trip we’ll make to see family again.

I nod, I say, “Of course.”

I do not protest.

But the voice inside my head wonders if they are pipe dreams, if I will actually be able to do that.

Cancer is in the driver’s seat on this trip.

But I hope it won’t be for long.

Link to radio interview with Robin Kall

December 2nd, 2012 § 0 comments

For those who were asleep in the wee hours yesterday morning and have asked, here is a link to the radio interview I did with Robin Kall yesterday on WHJJ. It’s about 15 min long… to listen click here.

If you are in a radio mood, the post containing the link to the HashHags interview I did a few weeks ago is here.

Update 11/30/2012

November 30th, 2012 § 17 comments

Good news first: I’ve been asked to be a blogger for the new Huffington Post section called Generation Why which focuses on young people and cancer. At first I had to look to my left and right and ask, “Me?” because I haven’t really thought of myself as young in a while. But certainly issues facing people like me with cancer can be unique. The necessary pushes and pulls of being social for my children with the always magnetic desire to just be alone will be one theme I will write about for sure. A friend commented that he was “impressed” I was writing for HuffPo… I will have to remind him that Jenny McCarthy does, too, so it might not be as impressive as he thinks!

That said, I’m very pleased to have a wider audience for my writing. I hope the readers and commenters will be as nice as you all have been. The first post should go up this week and I’ve decided to have them use this week’s post “Alone” as my inaugural piece because the response to that one was overwhelming. I might as well start with a bang! I hope that piece will be one that represents my perspective well.

So.. the bad news is not terrible, but here is the latest news. While I started with very good tolerance to the 4th round of chemo, the end of the round ended up bringing hand/foot syndrome (palmar-plantar erythrodysesthesia) from the Xeloda. Hand/foot syndrome is not the same as neuropathy (though it may include some of those symptoms), which many people on chemotherapy experience.

Hand/foot syndrome is associated with a few particular drugs, Xeloda is one. The capillaries in your hands and feet leak and/or rupture, causing the chemo to spill into the extremities. This causes them to be extremely red, swollen, painful, sensitive to touch, cracked, peeling, and potentially ulcerating. Numbness and tingling also accompany the condition.

For the past month I’ve been trying to keep these effects at bay, but eventually the toxicity builds up. Fine motor activities like tying shoes are hard at the moment, anything that touches/puts pressure on hands and feet. Thankfully I have some shoes with furry insides and cushioning. Socks must be worn 24/7 and slippers at all times. Holding the steering wheel is uncomfortable but doable, thankfully. So many people have suggested I should do something relaxing like go for a massage or manicure/pedicure. Unfortunately between the broken ribs and a “no touching” order for hands and feet these things will have to wait!

I had to skip my last dose (there are 14 in each round right now) of chemo yesterday to prevent a flare. The plan will be to reduce the chemo dose to 3 pills in the morning and 4 at night next round to see if that will be enough of a reduction to stop the progression of the syndrome. If it isn’t, we’ll reduce again. The reduction in dosage is not rare. My understanding is that tolerating 4/4 for 7 days on and 7 days off for more than a few months is pretty unheard of.

I’ll have bloodwork on Monday, December 3rd and then meet with my local oncologist on Tuesday the 4th for a strategy meeting and check on the hands and feet. I’ll also receive my monthly IV of Zometa for my bones at that time.

…………………

Tomorrow (Saturday) sometime between 7-8 AM I’ll be on Robin Kall’s radio show which streams at www.920whjj.com. Stay in your PJs and join us! I think it will be after 7:15 sometime as the 2nd segment.

…………………

Thanks for the continued support and I’ll have a more creative post this weekend.

Alone

November 24th, 2012 § 55 comments

I can see how isolating metastatic cancer can be already.1

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 6 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. I need to talk to my oncologists about whether they have patients like me.

It’s difficult to listen to people complain about trivial things, normal things, things I was complaining about two 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 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 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.2

I know these feelings are not unique to cancer [↩]
continued thanks to everyone who has helped with errands and playdates and the like. I am grateful for your assistance every day. The isolation I feel is emotional… I am lucky to have many who offer their assistance even though it’s hard to take it. I’m getting better at it, in large part because some people make it so easy to accept. [↩]

Because I can

November 21st, 2012 § 17 comments

I load the dishwasher, put in a load of laundry and buy Colin a new white dress shirt
Because I can.

I walk the two blocks between the doctor’s office and the drugstore on a crisp autumn day
Because I can.

I give my children an extra hug, just one more kiss, an additional “I love you” before the bus
Because I can.

But still I worry about today, tomorrow, and the next day.
How can I not?

I put makeup on yesterday.
I can tell it puts people at ease.
If I look “healthy” then they can relax.
If I don’t look sick they won’t have to worry how to act or what to say.

They tell me “You’d never know to look at you. You’d never know you have cancer. You’d never know you’re sick.”

Some moments that’s true. Some moments I feel good. Some days, in fact. And I treasure those.
Some days it’s a lie. It’s not how I feel.
I know it’s a compliment. I take it as such.

The phlebotomist asked me at my oncology appointment yesterday if I’m ready for Thanksgiving.
I wasn’t sure whether to cry or laugh.
Ready?
I don’t know.

Giving thanks. That’s a loaded phrase.

I am grateful I have some time. I am thankful for the kindness that gets shown to me every day by my family and friends.

I appreciate every person who tells me they are lifted by my words, learn from them, say they express something they have felt or even just wondered about.

For every email I get of support,
Every offer of help,
Every playdate,
Every Facebook post, photo, comment
I give thanks.

But cancer sucks. This diagnosis is my nightmare.

But I also know that tragedies happen to people every single day. A life can be lost without warning. I have learned of two sudden deaths of friends’ loved ones this week and I see the pain those losses have caused. I learned it for myself when my mother-in-law died. She did not have time to say her goodbyes.

I don’t like that my life revolves around this disease right now. I try to keep my life focused on others as much as I can. I try to check in on friends who have their own troubles. I try to keep up with the kids. I try to be a good wife and keep the house running. I wish I could be a better wife right now. I try to be strong. I try to suffer on my own time. I try at these things but don’t always accomplish them.

It’s an isolating predicament. Few can know the anguish, the daily trials, all of the parts of my life which don’t get shared with anyone. I share some here, of course, and with friends, but much of it is my own. For now, this is how it needs to be while I continue to process and try to make sense of this new chapter.

Thanks to you all.

…………………….

I was honored to be featured in this blogpost from the American Cancer Society titled “Cancer survivors are truly remarkable people” which focused on the post I wrote in the days after my diagnosis giving tips on how to talk to children about stage IV cancer.

……………………..

Many have asked about the fractures on my left side. The one that is painful is the one in a rib up near my collarbone. That will probably take two months to heal. It is a fracture caused by cancer in that bone. The cancer must shrink first. Only then can the bone heal. So it will be a slow process.

I start round 4 of chemo tomorrow, on Thanksgiving night. Same full strength dose because I was able to tolerate the last round again. Same regimen: 7 days on, 7 days off.

Cranberry Ice (again)

November 17th, 2012 § 7 comments

Of course memories and legacies are on my mind all the time now. I can say for sure that I won’t be remembered for my cooking. I might be remembered for my lack thereof, however! One thing I make well is a citrus cheesecake. I’m quite sure Clarke married me for this dessert. I’ll share it here someday soon.

I miss Barbara, my mother-in-law, every day. It’s been three years since her death in a car crash. I wrote a post about Thanksgiving two years ago and referred to one of Barbara’s traditions– a delectable treat called cranberry ice. So many people asked about it that I posted the recipe. I thought I’d share it here again because I know some people have already made it part of their own holiday traditions. I think that’s just lovely. I’m reposting the information here in case you want to give it a try:

……………………………………………

The way we serve cranberry ice is as a side dish, in place of cranberry sauce. The tart, sweet, cool flavor is delightful.

I like to make a double recipe so there are leftovers… I am giving the instructions for that; if you want to halve it, you may. Because you need to beat it with a mixer as it freezes, don’t make it late at night.

You will need:

2 bags of fresh cranberries

2 packets Knox gelatin

Lemon juice

2 cups of sugar

2 cups of water

Freezer-safe bowl and a food mill, ricer, or strainer

Directions:

Boil the cranberries fully until the skins fully split. Drain the cranberries and run them through a ricer, food mill, or strainer to remove the skins. (I use a food mill that Barbara gave me. It has a hand crank on the top and you turn it around and around and the skinned cranberry puree drops out the bottom. A more updated version is here). Once you have all of the cranberry puree in a freezer-safe bowl, set aside. Take the 2 packets of gelatin and dissolve in 2 cups of water. Add this to the cranberries. Add about 2 cups of sugar (less if you like it very tart). Then add a bit of lemon juice to taste.

Take the bowl and put it in the freezer. As it freezes, take it out a few times (2-3) and beat with electric beaters for about 30 seconds to fluff it up. This will keep the texture airier. If you don’t do this, the consistency will be far too dense and hard. Once frozen, serve with your meal using an ice cream scoop. It doesn’t melt immediately because of the gelatin. Barbara always served in lovely cut-glass footed bowls. I haven’t found ones I like yet, so mine was served in regular bowls today.

And yet, the morning comes

November 15th, 2012 § 44 comments

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, IV 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.

Hash Hags interview 11/12/2012

November 12th, 2012 § 3 comments

I had the honor of being interviewed by Julie Klam, Ann Leary, and Laura Zigman today on their radio show “Hash Hags.” I’m such a fan of the show and of these three authors; I always save the podcast to listen to while I fold laundry because it makes mundane tasks more fun. The truth of the matter is that I have a lot to say, which I guess is how I have written over 120,000 tweets. I think I will always be talking, sharing, asking, listening.

I really enjoyed being interviewed but of course I’m now kicking myself thinking of all of the things I wanted to say and didn’t. And of course, I love to talk about non-cancer things too.

Unfortunately, subjects like friendship during illness (especially relevant given Julie’s new book Friendkeeping) and how to help children deal with a parent’s illness just were too big to get to today. I also plan to write about these subjects more in the weeks ahead. Also, I will be writing about friendship and hope to get Julie here for a Q&A too.

If you’d like to listen to Hash Hags, click here.

………..

Tuesday I’ll be at Sloan Kettering to meet with my oncologist there to talk about how I’m doing on chemo, side effects, and the plan for the next month. I’m midway through the third round and doing well. I felt really good today and am glad for that.

Update 11/9/2012

November 9th, 2012 § 8 comments

Started chemo again last night, counts were good and side effects tolerable enough that we’re doing full strength again this time. 2000 mg Xeloda twice a day for 7 days, then 7 days off. The side effects are usually worst on days 4/5 through 9/10. Fatigue, stomach pain, GI upset, nausea, loss of appetite are the worst. Hand and foot syndrome is to come but haven’t had problems yet.

My potassium is low this week and my dad had a great suggestion for this (especially when eating is difficult). Low sodium V8 is packed with potassium. It has twice as much as regular V8. If anyone out there needs a good source, the low sodium stuff is it!

I’ve given up nailbiting and am shocked that this was the month I was able to do it.

I’ll be back at Sloan Kettering in a few days… and hopefully soon will be able to write more creatively again beyond these boring treatment updates. I know so many of you aren’t sure whether to contact me or leave me alone, but I hope these updates at least let you know the basics. It also always lets me thank everyone for the many ways you are helping me right now.

xo,

Lisa

Update 11/5/2012

November 5th, 2012 § 14 comments

A very short update because I have not updated for a while. We were hit by Hurricane Sandy and are still without power after 8 days. We are waiting for a Nor’easter to arrive on Wednesday which may cause further damage. A tree hit the house, fortunately came to rest on the chimney which prevented us from having the tree through the roof. The kids were out of school all week which was challenging since it was my week on chemo. But we got through it. My parents came and rode out the storm with us and I am so grateful for their help. They aren’t married anymore but they really do come together to help me, which is just what the kids and I needed.

We’re waiting for power to return and tomorrow (Tuesday) I will be back at the oncologist’s office (temporarily relocated because a lot of Greenwich is still without power as well). I’ll do bloodwork, meet with my doctor, and then get an IV dose of Zometa to help strengthen my bones and hopefully reduce some of the pain I am still having in my left shoulder from the cancer-caused fracture. I should probably wear a sling to help with the pain but I refuse to do it because I know it will cause so many questions of “What did you do? How did you hurt yourself?” I just don’t want to talk about it.

So many have been affected by this storm. My heart goes out to them.

I have a hard time right now dealing with the fact that once we get through the immediate cleanup from this storm I will still have this blasted cancer. And be dealing with it. Forever. And right now that is something I am having a hard time dealing with.

I do as much as I can each day to be normal… I went to the laundromat during the power outage. I did the grocery shopping today. I play Yahtzee and give snuggles. I don’t have energy to do as much as I want. I still ask for help. I have friends who’ve offered so much assistance and I am grateful. I am loved and I know it… I just am working through the mental anguish of this diagnosis.

I long for problems that can be fixed. I long for problems that have solutions.

Update 10/27/2012

October 27th, 2012 § 9 comments

Today is day 3 of the second round of chemo. My blood counts were good this week and I was able to go ahead with full-strength dosing of 2000 mg of Xeloda twice a day for 7 days. Side effects need to be monitored each round to see what dose I can take each time.

I’m tired after a very active week. Tomorrow (Sunday) is Paige’s 14th birthday. We have a giant Crumbs cupcake waiting for her birthday dinner tomorrow night. My friend Alex is bringing over a special meal of her favorite foods from The Rye Country Store so it will be ham and other assorted treats for everyone.

She likes when I tell her stories about her babyhood/childhood. I’ve decided to finally give her the scrapbook I kept for her during the first few years of her life (okay, fine, until Colin was born and I didn’t have time for that anymore!). It has photos, letters I wrote to her every few months about what she was doing and how we spent our days. I think she will love it. Tonight I will read each letter and page through the book.

We’re in Hurricane Sandy preparation mode. I’ve got two refrigerators stocked, generator propane tanks filled, case of oil for generator, porch furniture moved, flashlights galore, batteries, water, etc. I’ve done as much as I can to be ready and yet still I feel unprepared.

It’s all about control. Loss of control is a tough one. There’s been a lot of that around here lately. I try to give myself ten minutes a day where I cry and lash out at what is going on. I let it out, and then I move on. There’s no other way to be in my mind. To focus on the negative only ruins the days. I need to keep reminding myself of that.

I try to do as much as I can to be “normal”… to do the things I usually do like some laundry and grocery shopping and going to Tristan’s karate class. It helps the kids to feel that things are going okay and also keeps me distracted. My motto is “I’ll do as much as I can for as long as I can.” That is how it’s going to be.

I don’t know what the storm will bring to us and to so many of you in its path. I hope we will all be safe. My best to you all for minimal damage and disruption. As always, thank you for your kindness in all of its forms.

xoxo

Update 10/24/2012

October 24th, 2012 § 6 comments

Back to the oncologist on Thursday to talk about round 2 of chemo which also starts Thursday night. I’ll have my blood counts checked and we’ll talk about how I tolerated the first round. Frequently people can’t tolerate “full” dosage of the chemo for more than 2-3 rounds and they have to reduce the dose by 25%. I tolerated the first round reasonably well so I’m interested to see if we will be going full strength into the next round. I assume so.

It’s too soon to have any tumor marker tests show whether the chemo is working or not, so don’t expect any news about that yet. That will take weeks, perhaps many.

I am so grateful to friends who have been helping with playdates, rides, groceries, errands. I cannot tell you what it’s meant to me, especially during this very atypical few weeks. Thank you to everyone who has sent a note, email, treat, etc. It’s been overwhelming. I just can’t acknowledge them all the way I’d like (long handwritten note on gorgeous stationery) but please imagine that in your mind, because it’s what I’d send each of you if I could.

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To my dearest children

October 24th, 2012 § 35 comments

To my dearest children,

Someday you will understand the depth of my love for you. Perhaps it might take until you are adults, perhaps made more vivid if you are fortunate enough to have children of your own. No matter when, no matter how, I hope you will someday learn this powerful emotion I feel for you. You give me strength. You make me fight. You give me joy. You make my heart swell with pride.

I want to see it all. I want to see every day. I want to know every phase of your lives.

You see, I am a quitter.

I know, those of you who know me are probably chuckling and saying, “Yeah, right.”

It’s true.

There are very few things I’ve finished that I have started. I think I was always afraid of not doing something well. I would start and quit… or just not start at all.

But let that be a lesson: there is no such thing as perfect. Try. Fail. It’s okay. Take a chance. You have no idea where it might lead.

Hard work doesn’t always pay off. People don’t always get what they deserve. That’s just the way it goes.

I didn’t finish my Ph.D.

I never wrote a book.

But my darlings, let me tell you something I take pride in: you. Parenthood is a lifelong commitment. There is no backing out, changing your mind, saying “it’s too much.”

There is one job I’m good at and it’s being your mom (I’m a pretty good wife but I do tend to nag even though it’s for your dad’s own good). Your flaws and your talents make my heart soar in equal measure… they are what make you you. You are each so different, so unbelievably deliciously divine in your own way. Never doubt that my heart bursts every time I look at each of you. I’m pouring every ounce of love into you that I can. I’m going to just keep doing it every day.

Being your mom is the best thing there is.

Update 10/19/12

October 19th, 2012 § 23 comments

I’m doing quite well after first week of chemo. Today is my first full day off and I’ll start up again next Thursday night. I only have a few minutes to update you but I know I’ve been so quiet this week and usually that makes people worry!

I want to say that everywhere I’ve gone for medical appointments this week I have doctors telling me stories of patients of theirs who have been living with metastatic breast cancer in their bones for years (and in some cases, “years and years”). Until proven otherwise, that’s the group I’m putting myself in. Anyone who knows me knows I’m the biggest realist (and skeptic) there is. But right now I’m going full steam ahead and trying to recalibrate my life to this new normal. My body will be doing lots of work and I know I won’t be able to do everything I want to. I’m already accepting help so much more than I ever have. For now I am hoping that it helps others to be able to do something practical and useful for me instead of feeling helpless… since I know feeling helpless is a terrible feeling when watching a friend or loved one go through a difficult time.

I won’t talk about side effects today, I won’t talk about negative stories today. Today is about the stories of women with this disease who are living with cancer. That’s my story.

…………………………

And a few links for you non-Twitter folks who might not have seen:

Author Laura Zigman and her Xtrafrenemy videos make me laugh. She made one for me. You can watch the YouTube video here. I’ve heard of Lisa Adams! (Laura, I miss you… thank you for the gift of laughter).

Also, Media Bistro did a really nice piece this week on me. You can see that here.

“We Love You, Lisa”

October 17th, 2012 § 9 comments

My Twitter friend @thatneilguy (Neil Shurley) put together this sweet and tear-jerking YouTube video for me with photos from friends. He even wrote me a song to go with it. Then he created a Facebook page for me so I could see all of the photos individually.

I appreciate the love and attention so much from everyone and will need it in the days ahead. I’m dealing with chemo round one at moment.

Today is Wednesday. I have 2 doses today, one tomorrow morning, and then a week off. Side effects may not really go away in between. I’m learning as I go.

Here is the video of We Love You, Lisa … take a look

and the FB page is here .

I hope to be back doing some “real” writing soon, but for now short updates will have to do.

Go out and find beauty in something small today: a leaf, the sky, a hug, a kind word or deed. Go do it. For me. Because you can.

(okay, and while I’m nagging, make that healthcare appointment you have been putting off. Stay as healthy as you can. Be vigilant. #mondaypleads)

xoxo

lisa

Update 10/14/12

October 14th, 2012 § 20 comments

Thanks to Annie at PixelCurrents, Inc., I now have a “Tweets” tab on my home page. If you don’t tweet and want to see what I’m saying throughout the day, you can always check that page. Hopefully this will also help reduce the number of updates needed.

I’m on day 4 of chemo, hanging in okay. Should start feeling more effects in next 48 hours. Awful fatigue, painful/sensitive/cracking hands and feet and some other things are to come.

Sold tickets at the school carnival for two hours yesterday which was fun and normal except for the part where some people looked at me oddly or started crying when they saw me. That’s hard to take. Things like “chin up!” aren’t particularly helpful nor is “Everything happens for a reason” or “You’re only given what you can handle.” Attitude isn’t always everything. Genetics can trump all. I fight with science. My old post where I asked people to tell me the strangest thing someone said to them about cancer is getting some new comments. You can read the post and add your comments here. Some of them are jaw-dropping.

Please don’t send me suggestions of things like ozone treatments or anything like that to cure my cancer. I’m not interested. Don’t tell me about your relative or friend who died a long, painful death from this particular disease. That’s not helpful, though I’m sorry they had that experience. It’s not that I’m insensitive, but when you’re scared, what you don’t need are people telling you how bad it’s gonna get. Hearing details of a death from the condition you have — I’m not ready for that yet. I know most of what’s ahead. Trust me. And if I don’t… just let me learn it for myself. Also, “Rah-rah! You’re going to beat this! Stay strong and chin up!” doesn’t do much.

I know that people don’t know what to say. In most cases I know their hearts are in the right place. I don’t share these quotes to shame people. I share them to educate, to help teach people comments that might be interpreted by people with cancer in a particular way.

Throughout the last five years everyone always asked me, “why don’t you just move ON?” When they said “You’re done with treatment, go live your life. We think you have a long and healthy life ahead of you” I could not. I was always vigilant with my health.

I was right. And so was my oncologist. Five years doesn’t mean cured. There is a reason why I never said I was cured and THIS IS IT. I’m told I had a single digit chance of recurrence. Statistics were not on my side. I’ve always been an outlier. In the negative.

This one time, though, I am doing what I can to be an outlier in the right kind of way. Let’s hope this works and gives me lots of time.

As always, I appreciate the concern and offers of help I receive every day. I am loved, and I know it. I don’t take it for granted.

Update 10/11/2012

October 11th, 2012 § 30 comments

Ten hours, 2 oncologists, 2 hospitals, 1 IV infusion of Zometa, one blood draw1, one knock-down drag-out fight with insurance, and first 4 chemo pills taken. That was today.

I don’t feel well enough to write out everything, but I do want to do a quick update because I know so many are wondering and I can’t address all of the messages individually.

My brain MRI came back clear. I found out when I was in my meeting at Sloan Kettering. Tears of relief.

After a two hour chat with my oncologist there I made some treatment options.

I will do monthly infusions of Zometa to strengthen my bones. Side effects have started already from this and are worst on the first dose. Flu-like symptoms including bone pain, fever, joint pain, etc. should sideline me for the weekend.

My chemo regimen will start with Xeloda. It’s an oral chemo, in which I take 4 pills in the morning and 4 at night. I do this for 7 days. Then I get a week off. Usually days #5-10 are the worst for side effects. Fatigue will be bad. I will not lose my hair.

I will do these two things and we will do bloodwork at one month to check my tumor markers (CA 15-3 and CA 27.29). They may not go down right away even if the chemo is working. It may take another month or two to see that. Also, there is a mechanism by which when you start attacking cancer it may temporarily make the tumor markers go up. So, you can’t put stock in the first month’s blood levels. I happen to be one of the 2/3 of patients who actually show elevated tumor markers during a metastasis. In 1/3 of cases, patients with metastatic breast cancer will not have elevated levels. So bloodwork will be one tool I can use to monitor this process.

My ribs can’t heal until the cancer is reduced. But the Zometa may help with the pain.

I will have a repeat PET scan in 8-12 weeks, probably 8. We’ll see if the cancer seems to be holding steady or even shrinking. Again, holding steady would be enough to continue on the regimen I’m on.

It’s mindblowing that the rest of my life will be spent on some form of chemo. I’m coming to terms with that. It still scares the crap out of me.

But, I have a plan and I’m going to do what I can to be strong.

I’m tired and dizzy and worn out. But I do appreciate all of your messages and love. It matters.

I hope this gives everyone an overview. I’ll try to address questions at a later time.

xoxo

lisa

during which the phlebotomist told me that “you’re only given what you can handle.” If I hadn’t had a needle in my hand I would have punched her… [↩]

10/10/12

October 10th, 2012 § 29 comments

Many friends and family are now following my Twitter feed. If you are, let me know. My username there is adamslisa. It’s nice to see more of you there. I do update a lot there in between big posts here. Daily life is there. I don’t always catch new followers.

My meeting with my local oncologist was about an hour. Some tests are back, (still waiting on a few and Sloan Kettering will run some other tests with their own pathologists) and they indicate that the cancer is “strongly estrogen receptor positive” (not a surprise). This means there are a variety of drug agents we can start with to try to keep this under control. The two-prong goal is to actually shrink the disease that’s there and also keep it from progressing for as long as possible. In most cases, older women are more likely to have slower growing disease and younger women to have more aggressive disease. We’ll have to see if the drug therapies (starting with anti hormonals) will work. Of course I’ve been on Tamoxifen or Armidex all along and also had my ovaries out, so I am already in an estrogen-deprived state. Not sure what that will mean for likelihood of working but the science of it is complex and I’m learning as I go. There are injectable agents and IV chemo to throw into the mix too. All will have side effects, of course.

We learned that the pain I have in my shoulder and chest is actually two fractured ribs from where bones are weakened by cancer. That will not heal until the disease is reduced. If the pain gets too much before we do that I will need 2-3 weeks of targeted radiation to kill those cancer cells and allow the bone to heal. I’ll start an infusion of Zometa to help strengthen my bones in the next week. That is an IV drug given monthly to help my bones.

The actual plan of what I will start with be decided Thursday, once I see what clinical trials are available. At this point most likely will be starting with the standard combo of Aromasin and Effexor. These are oral chemo, anti hormonals. They have side effects. Mostly bone pain, joint pain, mouth sores, dry mouth. I need to do reading on them soon. This is the first line of defense. I get to keep my hair during these. PET scans will be about every 2 months. Bloodwork in the form of tumor marker tests will be monitored monthly. I was one of the 2/3 of women who have elevated numbers at time of metastasis so at least there is something useful in looking at those. This is one reason some doctors don’t like these tests routinely: one third of the time there will be a metastasis without an elevation in these tests. They also can be elevated for a reason other than metastasis, so there are false positive results.

I have disease in the fractured areas, in T12 of my spine and in a spot on my upper femur near my hip. Today I will have a brain MRI to see if there is any in my brain. The PET does not have the ability to show that. Of course we hope with all of our hearts there is not.

How long has the cancer been there? Hard to say. I mean, the reason you do chemo is because you figure that once cells have left the breast you might be missing some. Any cells that are left can start growing at any time. That’s what the anti hormonals like Tamoxifen and Arimidex (an AI, or aromatase inhibitor) are designed to keep at bay to a greater extent than doing nothing. My doctor feels there are periods of exponential growth which eventually reach critical mass. This cancer has probably been there for about six months or less. In my spine and femur the cancer is confined to the soft part of the bone, the marrow.

I’m having trouble eating, pretty much confined to liquid and soft foods like yogurt. I’ve lost a lot of weight and know I need to get my strength up for the assault that is about to hit with treatment. I’m trying. Right now I am very weak, in body and spirit. But this will change. It must change. I’m adjusting and gaining knowledge and I had better get my head around this soon. But that is hard. I am angry and sad and scared and I go through every emotion multiple times a day. I cry at everything and nothing. I snuggle with my children as much as I can. I talk with Paige about what’s going on, she wants to know everything. We do not talk about prognosis and timing, only that it’s not curable and treatment won’t ever end. We talk about advances in treatment and how new things are coming along every day. We talk about the role Herceptin has played in giving life to those with the HER2Neu form of the disease. I do not have that form, but my mother did. The infusions she received of Herceptin (at that time not yet FDA approved but she got under ‘compassionate use’ exemption) saved her life we believe.

So, brain scan Wednesday afternoon, Sloan Kettering Thursday. Then we will have a plan and will start immediately. Until then, resting and trying to eat and control the pain in the fractured areas.

I won’t lie: every moment is a nightmare. There isn’t a second I am not thinking about cancer now. I hate that part, how it eats my life as it consumer my bones. I know this is normal for now but I hope someday soon I can think about other things. I don’t know if that’s a pipe dream.

My friend Andrea sent me the most magically colored flowers yesterday. The note said, simply, “Anything is possible.” I alternate between wanting, needing to believe that and thinking that might be giving myself false hope. But then I think of how much I believe in science, and drug advances, and I want to believe that’s true.

Thanks for all of the continued love and support. These posts take a lot of time and energy so they won’t always come immediately. I am using time to rest and do tasks around the house that need to be taken care of, doctors’ appointments, etc. Thank you notes have taken a back seat and for now an email of gratitude is all you might get from me. I wish I could do more, but please understand why this is the case. And as always, the disclaimer: I am presenting my interpretation of what I am being told by my doctors. It’s not medical advice. It is sometimes simplification of complicated medical scenarios. I’m doing my best to distill it down but I’m not a doctor.

Much love,

lisa

These things are not tied with a pink ribbon (Breast Cancer Awareness Month)

October 9th, 2012 § 22 comments

I hate October now. I don’t even like the color pink anymore. I get cranky in the last days of September when I start seeing everything from toilet paper to staplers colored pink and sporting a pink ribbon. It’s not that I don’t want attention called to the disease that affects so many people including me; it’s more that I think the focus has gotten misplaced. I don’t support Susan G. Komen Foundation anymore; I think they have lost their way. There is good research going on in many places, but I have come to question the line between commerce and research with Komen’s support of everything from Kentucky Fried Chicken to alcoholic beverages to its own perfume while simultaneously trying to prevent anyone else from using the phrase “For the Cure” (see my post on why I divorced the Komen Foundation years ago here). What happened to thinking we are all in this together, trying to achieve the same goals?

When I originally wrote it I tried to think about awareness and what it means to me. I wanted to explain why pink ribbons didn’t mean awareness; I wanted to capture the emotional side of this disease. I re-post it every year. Now, with my new diagnosis of metastatic breast cancer, it’s time to share it again.

…………………………………………………..

I wish I had the energy of my youth.
I wish I had the body.
I wish I had the fearlessness, the spunk, the drive.

I wish I could have a conversation with that young girl,
bright-eyed and full of wonder.
I wish I could tell her what lay ahead.

But I can’t go back to that time,
I can’t go back to that place.
I can’t rewrite what’s happened,
I can’t do it all again.

It feels worse than taking injections to suppress my ovaries, worse than taking Tamoxifen. Those were easy. I had no clue what was ahead.

Beneath the pretty lies ugly,
the ugly truth of cancer
and what it has taken from me.

While some may be able to go on,
move on,
forget,
I cannot.
My body will not let me.

These things are not tied with a pink ribbon.

These things last longer than a month.
This is part of awareness.

This is part of what breast cancer can do.
This is what it has done to me.

10/8/12

October 8th, 2012 § 6 comments

I just received a call from my oncologist: the pathology reports are not back yet so our meeting is postponed until tomorrow (Tuesday) morning.

leave a reply (6) § permalink

Update 10/7/12

October 7th, 2012 § 19 comments

My Facebook page has bloomed into a virtual garden. Friends have posted photos of their favorite flowers in a digital display of love and support. I love this idea. Each person has posted a picture more lovely than the next and I can’t tell you how much I appreciate it.

Many readers have asked about how I found out my cancer had returned/metastasized. I will write that account soon: it’s important. However, I need some time to write that up completely. I’ve been spending the weekend with my two older children having long talks about what’s happening. Their love and concern is heartbreaking. These talks are among the hardest conversations a parent can have but are the most important. These days are setting the foundation for those to come.

Monday afternoon at 4:30 I will meet with my local hematologist/oncologist and find out the details of my pathology report and talk more about the diagnosis. Thursday I will meet with my breast oncologist at Sloan Kettering and discuss treatment options with her as well. I have used both of these physicians since my original diagnosis so I don’t have to start from scratch with my medical history over the past few years.

I expect immediately after these meetings I will begin my first phase of treatment– whatever that is. I won’t speculate at this point what it might be, there are a variety of forms it might take.

I’m healing from surgery, my neck is very sore, with a good sized incision at the base of my throat. I had a nice tracheotomy scar there already since the age of 5; unfortunately, this one is puffy and angry and red and makes me miss my old one a lot. I couldn’t talk yesterday, but today I’m back jabbering away. I alternate between strength and falling apart, but I don’t think that’s anything unusual. It’s still all mindboggling. A week ago I was readying for a trip to the same oncologist, with no clue what news awaited me.

My appointment is late in the day Monday, so the next update might not actually get written until Tuesday. I’ll be in touch.

What to do when you get diagnosed with Stage IV breast cancer: some starting thoughts…especially about children

October 5th, 2012 § 27 comments

I loved the book The Age of Miracles by Karen Thompson Walker. I had the pleasure of meeting the author a few months ago. In the book, the earth’s rotation starts to slow. The days stretch longer with obvious consequences on daily life with some not-so-obvious effects on personal lives. I found the book immensely readable, creative, and thought-provoking (My teen daughter thoroughly enjoyed it too. It’s absolutely appropriate for that age group).

My own life has suddenly taken an opposite turn. It feels as if the world has sped up. The days are flying by. There just isn’t enough time.

It’s only been four days since we had an inkling from my oncologist that I had metastatic breast cancer, three days since I have known for sure. And now, in the middle of the night, it’s time I long for. The Earth is spinning so fast… how can it be I’ve been awake for two hours? Have I spent them wisely? What else could I be doing with those days, minutes, seconds?

I’ve done so much already.

I wanted to share a few ideas on things I’ve done already, many of them pertaining to my children. In the dizzying days after a metastatic cancer diagnosis there is so much emotion that it might be hard to think about what to do. You feel helpless. In some ways you are helpless until you get more information. But in the meantime here are some tips about what you can do.

I understand that not all of my readers have children. But for those of us who do, helping children adjust to this news is vital. It not only helps the children but can help relieve some associated stress for the parent.

Don’t share your news until you know for sure what your particular diagnosis is. I don’t think you need to know your exact treatment; that takes time. But even knowing a general range of what might be used is helpful. If you have had cancer before, children will usually want to know if you will be doing the same thing (especially if it has to do with hair loss) or if it will be different.
In my case I needed to have a mediastinoscopy with biopsy after my status was confirmed. It’s an outpatient surgery that inserts a camera through an incision in your neck to grab some lymph nodes for biopsy. I decided to focus on that concrete event mostly… it’s something children can wrap their heads around… Mom is going to the hospital (not uncommon in my household), having a small operation, will be back tomorrow night. I explained the cancer, the metastasis, and answered lots of questions, but I think the “one step at a time” was more easily tangible with the surgery as the immediate hurdle. If you will need an overnight stay for your particular surgery I think it’s best not to spring that news on children if possible. An overnight absence is best with a few days’ notice. Children, in my experience, are usually a bit clingy after bad news and that would provide the opportunity for follow-up questions and reassurance.
Be sure you understand your diagnosis. Explain what words mean to children and to your friends. There are many misunderstandings about cancer and stage IV cancer. The word “terminal” might be scary. Stage IV cancer is not the same diagnosis in different diseases. Prognoses vary and some types of metastatic cancer can be slow-growing or respond well to treatment, allowing years of life.
I think the phrase “it’s not curable but it is treatable” is important to teach and use.
Wait to share your news publicly until after you have told your children (except with a few close friends you can trust to keep the information to themselves. This determination may not be as easy as it sounds). This also gives you a day or two to begin adjusting to the news so that when you do discuss it with your children you might have emotions a little more in check.
As soon as you tell your children, be sure to tell adults who work with your children on a regular basis. If your children have learned the news, by the time they go to school, lessons, and sports, their teachers need to know. Email coaches, teachers, school administration, guidance counselors, school psychologists, and music teachers. Grief in children is complicated and it’s important that all of the adults know and can be on the lookout for odd behavior. Also, they need to be understanding if things don’t seem to be running as smoothly at home or a child seems tired or preoccupied. Two-way communication is key. Adults need to know they have the opportunity to bring any problems they see to your attention easily. Encourage them to do so, whether what they observe is positive or negative.
Use counselors, especially school psychologists. My first call yesterday morning before I left for surgery was to reach the high school psychologist. Because Paige is in a new school (high school) I didn’t even know which person it would be. Even though it was only 9 in the morning when I called, the psychologist had already received my email (forwarded from the guidance department to the appropriate person) and had a plan in place to find my daughter during 2nd period study hall. She was able to introduce herself, talk to my daughter, and let her know how to get in touch with her as needed. They set up an appointment to meet to talk more in depth after their initial chat. Paige likes her, feels comfortable with her. This resource is invaluable. After my mother-in-law was killed in a car crash 3 years ago, the middle school guidance counselor became a refuge for Paige. When she was sad, distracted, needed a place to go have a good cry or talk, she had a safe place with an adult to help her. These individuals are part of my team. We are working together and it’s so important to use them.
I have always felt that it’s important to be honest about a diagnosis; that is, open and public. I know this doesn’t work for everyone. The downsides of being public about a diagnosis are outweighed by the negative pressure for children if they have to keep a secret and bury feelings about such a serious topic. Children take their lead from you. If you are up front and comfortable discussing it, your children will learn to be that way, too.
Call your other medical professionals and tell them of your diagnosis. Not only will they want to know because they care, but there may be instances where treatments may need to be examined or medications evaluated more often (for example, my endocrinologist wants to monitor my thyroid hormone levels more often than usual). They are all part of your team. They want to know. Many of the most touching and heartfelt phone calls I got were from my doctors this week. They cried with me, gave me information, offers of help, and caring. It also means if you have a situation when you need urgent medical care their office will already be aware of the situation and will likely respond more quickly to get you in to see the doctor.
A carefully worded email is invaluable. Accurate information is documented so people don’t spread rumors. Friends can refer back to it if needed without asking you. They can forward it to other individuals easily, as can you. Choose your words carefully. The words you use will be repeated so make sure the email says what you want it to say to friends and relatives. The right explanation is much more helpful than a quick one sentence Facebook status update. People will have questions, and you can head many of them off by including that in your email (if you so desire).

I will be posting more tips about what I’m doing in the weeks and months ahead. Hopefully they will help you or someone you care about. There is so much you can’t control during this time, and that’s unnerving. Even taking steps like these can give you concrete tasks and a feeling of accomplishment that you are helping yourself and those you love.

The blogpost I never wanted to write: my cancer is back

October 3rd, 2012 § 152 comments

Dear friends and family,
This is the last post I ever wanted to make but you all know that I am open and honest to a fault. Many of you noticed that I have not been online all week. Some of you checked in on me.

Some of you have heard the news by now: this week I received confirmation that my cancer has returned, now it has metastasized to my bones. It is not bone cancer. It is breast cancer that is in my bones. This means it’s stage IV breast cancer.

On Thursday I will have surgery to go in through my neck and retrieve some lymph nodes in my chest for testing. This will establish the hormone receptor status of the disease. My cancer was hormone receptor positive the first time around, we need to see if it still is or whether it’s converted. This is important in that it tells us what drugs to try first to contain the disease.

This is not curable. The goal is to keep it growing slowly and keep it at bay for as long as possible. At this point how long that is is pure speculation, we need to see how it responds to drugs I will take. These could range from oral anti- hormone treatments to daily injections to IV chemo again. There are many different types of things they can try to use on this. I have already had a double mastectomy, chemo, and my ovaries removed to try to keep this from happening. Unfortunately my efforts did not work.

I will be writing more in detail about how I found out the cancer was back (be your own health advocate!) and writing along the way about what’s happening and what treatment is like. I know not all of you are readers of my blog; that will be the best place to get updates for now. My goal has always been to de-mystify this disease and its treatment as much as possible and I will continue to do that to the end. For now I am focused not on the end result but on the potential for science to provide me with treatment that will give me years of happiness with my beautiful husband and children. I do not know how many those will be.

If you want to receive emails of the blogposts (no pressure!) you can go to lisabadams.com and enter your email address in the upper right. Be sure to look for the message in your inbox; you have to confirm that message to receive the updates. You can always just drop in to the website for an update if you don’t want to get them automatically. I will need to use the blog to do updates mostly because the updates will become time-consuming and I hope to do them in a public way to allow other people to read what this part of cancer is like. Those of you who follow me on Twitter, I will continue to be my prolific self as much as possible. My friends there are real friends in every way and have become some of my strongest in-real-life friends and were the first to pick up on the fact that something was wrong.

For now there isn’t anything we need. I’m hibernating and will need a few days to recover at home from the surgery tomorrow. You will see people around in the coming months who are helping me with the house and kids. My mom and dad will come at various times as well.

I ask that you not ask the children too many detailed questions right now. They will be getting used to this way of life again. They know my cancer is back. They know I will be treating it. We are leaving it at that for now to let them adjust to this while we gather the necessary information.

I know I have a great family and support system with all of my friends and I already am seeing the help and love they can give. I thank you for your concern, thoughts and wishes and you know I will be giving this everything I’ve got.

Please understand if I cannot respond to every message in a timely fashion. Your words mean so much to me but there are only so many hours in the day right now during this hectic time. I do read every single one though, and am buoyed by each.

Much love,
Lisa

Three years later

September 16th, 2012 § 19 comments

Today marks the three year anniversary of my mother-in-law’s death. In the days and months after Barbara was killed in a car crash I wondered if I would be able to go one day, one hour, one minute without thinking about her. As grief does, it has quieted; its hold does not intrude so directly. And yet, the icy tentacles of loss invade our lives still. As our children grow, the fact Barbara isn’t here to see them still causes me great anger and sadness. Paige started high school this year, Colin is in 5th grade, Tristan just started 1st grade. These are days of so many changes and celebrations and I wish we could share them with her.

I remember vividly when she first died that I could not imagine there would be a day when I could tell the story of her death without crying. For weeks after she died I didn’t put makeup on, knowing my tears would undo that small effort to gain some normalcy. Then again, I remember thinking, why did I want to put makeup on anyway? Someone I loved was gone, and nothing else mattered.

Most of us have no ritual to show the world we are grieving; the anguish we feel remains mostly private. In a country where so many cultures and religions coexist, we have no universal public display of mourning status. The Jewish tradition of a torn piece of clothing (or a button with a torn ribbon attached to it) does not have an analogous ritual in many other religions. For those of us who are not religious no outward display of mourning status exists.

My mother (a psychologist specializing in grief and loss) and I have long thought a visible display of mourning status is needed. First, it is a visible way to say “handle with care” to the world. There is no way for a stranger to know the reason you haven’t pulled out of your parking spot is not because you are checking your email on your smartphone but instead is because the woman walking in the parking lot looked like your relative from behind and for a moment you thought it was her and you are sobbing in your seat.

Public displays of mourning status could also serve as a signal to others that you are part of a group. One of the hallmarks of grief is feeling alone, that no one understands. If there were some type of visible “marker” of grieving status, mourners would know that there are so many others who share their pain. Teachers, coaches, and others might be more sensitive to the grief of children if such a symbol were shown.

In the absence of mourning symbols, family members must have good communication with schools and workplaces to keep them updated on the grief process. I believe it’s vital to have repeated conversations about death with children who may not be able to articulate their fears and concerns well. Not only will this show others that death and grief are topics that can (and should) be talked about, it will also ensure that misinformation does not persist.

I revisit difficult subjects with my children often in which I ask them to recount (1) what they think happened (“Tell me what you remember”), (2) how they are feeling (“What emotions did you have then? Have they changed?”), and (3) what questions they have (“Is there anything you would like to know more about?”).

I think it’s important to go back to difficult times and discuss them as children get older and their comprehension changes. I have definitely found this to be the case with my cancer. What my young children understood at the time I was diagnosed is very different from what they are able to understand now. If the circumstances of a relative’s death are complicated, it might be necessary to repeat the story to children and even to adults. These are important narratives.

Today is also the anniversary of my paternal grandmother’s death. These two special women are forever in my heart and on my mind today.

Barbara with Paige, 2001.

When art doesn’t just imitate life, it captures it (Angelo & Jennifer Merendino and The Gathering Place)

July 20th, 2012 § 8 comments

There is a natural tendency to turn our heads from things which are upsetting.

But as adults it is our responsibility to be aware of them.

Protecting is not always the right thing.

Jennifer Merendino was first diagnosed with breast cancer in 2008, shortly after her wedding. Her husband Angelo began taking photographs (www.mywifesfightwithbreastcancer.com). Angelo documented her surgeries and treatment all the way through her death in December of 2011 after she experienced metastases to her liver and brain.

The Gathering Place: A Caring Community for Those Touched by Cancer in Westlake, Ohio, said they wanted to exhibit some of Angelo’s photographs in their art gallery.1

After a successful opening, The Gathering Place pulled the exhibit. In their own words:

Shortly after the exhibit was hung some of our volunteers (many of whom are cancer survivors) and our participants found it very difficult and emotionally upsetting to see the exhibition. Because our mission at The Gathering Place is to provide a peaceful, healing and nurturing environment where our participants feel supported and encouraged, we have chosen to remove the exhibit so as to not add to the emotional challenges a cancer journey creates.

It’s not that I can’t understand how someone might find the images disturbing. In fact, I think you are pretty hard-hearted if you don’t. But that is the point. It isn’t enough to say you want to be “a community for those touched by cancer.” It’s important to get the message out: breast cancer isn’t pretty. It isn’t a pink ribbon or a one-day walk to raise money. It isn’t about wearing a pink football cleats in October.

I do not agree with The Gathering Place’s decision to remove the photographs from their art gallery once they had seen the photos, chosen to display them in their gallery, and had a public opening. Despite their stated goals, in this instance they don’t “get it.” The proof of that to me is the web address name The Gathering Place used to announce the removal of the photos from the gallery. The web address for that post is http://www.touchedbycancer.org/2012/07/art-imitating-life/

Art imitating life? No way. Angelo’s art is no imitation. It’s the real deal. It captures the reality of his wife’s cancer treatment for all to see. And sometimes, even when it’s painful, we must look.2

Thanks to PinkRibbonBlues.org for the summary of the timing. You can see Gayle’s post on this topic here [↩]
for more of my thoughts on the reality of breast cancer, read my post “These things are not tied with a pink ribbon” [↩]

When I die

July 13th, 2012 § 65 comments

When I die don’t think you’ve “lost” me.

I’ll be right there with you, living on in the memories we have made.

When I die don’t say I “fought a battle.” Or “lost a battle.” Or “succumbed.”

Don’t make it sound like I didn’t try hard enough, or have the right attitude, or that I simply gave up.

When I die don’t say I “passed.”

That sounds like I walked by you in the corridor at school.

When I die tell the world what happened.

Plain and simple.

No euphemisms, no flowery language, no metaphors.

Instead, remember me and let my words live on.

Tell stories of something good I did.

Give my children a kind word. Let them know what they meant to me. That I would have stayed forever if I could.

Don’t try to comfort my children by telling them I’m an angel watching over them from heaven or that I’m in a better place:

There is no better place to me than being here with them.

They have learned about grief and they will learn more.

That is part of it all.

When I die someday just tell the truth:

I lived, I died.

The end.

The hidden danger of hope (The Stockdale Paradox and The Good Father)

June 28th, 2012 § 26 comments

I finished a new novel recently, one I enjoyed enough to share with all of you. It’s called The Good Father by Noah Hawley, and it’s an exploration of what might happen to a parent when his child is accused of doing something terrible. In this case, Dr. Paul Allen’s son is accused of shooting and killing a candidate for President (I’m not giving anything away by revealing that plotline). Paul eventually starts traveling around, talking to people who knew his son during the months leading up to the shooting. One man he talks to is named Carlos.

Carlos tells Paul a story about his brother who stepped on a land mine. His legs were saved but his intestines were crippled. He needed a colostomy, and doctors repeatedly told him it was temporary. They keep telling him that he will use the toilet in the normal fashion again. But their promises don’t come true. He continues to need the colostomy. After two years of false hope his brother couldn’t take it anymore, and he kills himself. Carlos says:

Acceptance is the key to happiness. If those doctors had told my brother he’d be crapping in a bag for the rest of his life, he would have accepted it. He could have found a way to be happy. But instead they gave him hope. They promised him a better life. And so he spent every day hating the life he had.

Though fictional dialogue, this scene really struck home. It immediately reminded me of Admiral Jim Stockdale and The Stockdale Paradox. Jim Stockdale was the highest-ranking naval officer held as a Prisoner of War during Vietnam. Captive for more than seven years, tortured more than 20 times, Stockdale is an expert in how to deal with hope. Stockdale talked about his experience to James C. Collins, eventually published in the book Good to Great:

I never doubted not only that I would get out, but also that I would prevail in the end and turn the experience into the defining event of my life, which, in retrospect, I would not trade.

Stockdale’s next observation floored me the first time I heard it. He was asked to talk about those who did not make it home, who died in Vietnam after being taken into custody:

They were the ones who said, ‘We’re going to be out by Christmas.’ And Christmas would come, and Christmas would go. Then they’d say, ‘We’re going to be out by Easter.’ And Easter would come, and Easter would go. And then Thanksgiving, and then it would be Christmas again. And they died of a broken heart.

This is a very important lesson. You must never confuse faith that you will prevail in the end—which you can never afford to lose—with the discipline to confront the most brutal facts of your current reality, whatever they might be.

Stockdale is telling us to forget the eternally positive attitude, the belief that hope is enough. He says, rather, that you must always believe you will succeed, but not place an expiration date on it. In fact, doing so (“I’ll be better by Christmas”) can, in his opinion, be a recipe for disaster and self-destruction. Stockdale had a failed political career, but that doesn’t matter to me. He made it through his confinement, and what he thinks about the reasons for it interest me.

I’ve never been a believer in the “a positive attitude is everything.” That doesn’t mean I don’t think you generally should have one. Like Stockdale, I believe you must fight as if you will win. But, and this is key to me, you must accept that you do not know the outcome. This is where I differ with Stockdale’s prescription. I believe you cannot confuse having hope with the reality that your hope may not be, and often will not be, enough.

A few weeks ago as my three children had their dental checkups, I picked up People magazine. I skimmed the letters to the editor. One letter, from a woman named Barbara, referred to a prior People story about Ryan O’Neal having cancer. “I know that he will overcome this because he has immense strength and courage,” she wrote. Barbara is not unique. I have heard this exact statement countless times.

First, I’m fascinated by Barbara’s knowledge over O’Neal’s outcome. To claim she knows what’s going to happen to him is pretty remarkable. She has no knowledge about anything except a few quotes in a pop culture magazine and yet she “knows” he will overcome it. Second, and this is the big one: strength and courage are not enough, I’m sorry to say. Don’t those who die from cancer have strength and courage? Is it their fault that they aren’t surviving? Strength and courage are needed, for sure. But just having them won’t do it. You can’t think the cancer away.

Steep in the glory

June 18th, 2012 § 11 comments

The last month has been busy with good things.

Somehow I’ve wanted to tuck these things away, commit them to memory, etch them in my mind so that I might remember. I’ve been taking loads of pictures and rather than writing, photography has been my way of documenting these times. I find myself taking photographs more and more each week, and getting a lot of joy from doing so. I post many of them on Instagram for those of you who might be interested (username: adamslisa).

Paige graduated from eighth grade this week. The fact that my firstborn is starting high school in the fall is mindblowing.

Colin finished 4th grade, made the All-Star baseball team (they lost the game) and then had his Little League Minors team win the Championship today (a happier boy could not be found). He pitched the first 3 innings of the game today and I’ve enjoyed this season immensely. What a great group of boys and coaches on the team this year. I love that he still waves to me when he is playing right field and still will yell, “Hi Mom!” as he runs by. I love that he still hugs me at the bus stop and tells me he loves me many times each and every day, without hesitation.

These things matter. They may change. They probably will. But for now, I treasure them.

Tristan and Paige had a piano recital yesterday and Tristan got his first trophy. On Tuesday we will take him to Philadelphia to see his orthopedic team at Shriners Hospital for a checkup. He is bubbling with excitement at being a first grader now…

June 18 is a significant date. It was 5 years ago today that I had my last chemo treatment.

Five years isn’t meaningful in terms of my disease. It doesn’t mean I’m “cured.” My kind of breast cancer can return after seven years, or twelve, or fifteen. But it’s still five years so far that I have had no evidence of a recurrence. Five years of memories. Five years that matter.

These last few weeks have been magical to me.

These were the days I fought for.

These were the days I wanted.

These are the days I longed to share with my husband and my children. And I am doing just that.

I’ve been overwhelmed with emotions in these weeks, seeing my children change and being so proud of not only what they do, but also who they are.

I think when it comes down to it I haven’t been writing this month because I needed to hold all of this inside. I needed to let it sink in. I needed to steep in the glory that these simple days hold.

Being alive to share these days with my friends and family.

Helping others who are undergoing treatment and surgery.

My days are full and I do not take them for granted.

Taking chances

May 4th, 2012 § 10 comments

Regrets are most often over things we have not done, rather than things we have.

Inaction, it seems, is harder to tolerate than action.

Doing something, even if it’s ultimately a mistake, is better than doing nothing.

I’m constantly torn between taking chances and staying nestled in the warm comfort of habit. I am a lover of routine, constancy, predictability. One of the many reasons I fell in love with my husband is his admirable and enduring sense of calm. I am more hot-headed, far quicker to be annoyed, get frustrated, to yell. I strive to be more like him in his ability to go with the flow, but most often I fail miserably.

I’m not a risk-taker. I tend to over-think things. If there is something unpleasant that needs to be done, I do it immediately so I can move on. If I were still a child I would eat the green vegetables first so I could enjoy the rest of the meal.

Making drastic changes often doesn’t work. I’ve been trying to branch out in a few ways over the past few months and I’m happier for it. I’ve started doing Pilates weekly, sometimes twice a week, and I’m loving it. I am physically stronger, have a teacher I adore, and many weeks get to take the lesson as a duet (semi-private) with a dear friend.

I’ve been taking lots of photos and enjoying not only the images I’m capturing, but also the social element of sharing them on Instagram. I enjoy seeing the slivers of beauty that are around us every day and am taking time to appreciate them more.

I’m taking more chances with my writing. I’ve been privately writing about a wider variety of topics, and trying out longer-form work. I recently read a story I wrote out loud to a group for the first time.

I curse middle age a few times a day, mostly about my body and how things just don’t work like they used to. But the perspective I have through my life experiences, the wisdom that I have after 42 years of ups and downs, the confidence to say, “I am flawed, I will try to be better, but I also know who I am” are all valuable.

I enjoy having others in my life but also know that when it comes time to take a chance, I can wrap my arms around myself and jump.

Beauty in the rain

April 21st, 2012 § 4 comments

On our last day in Jamaica it started pouring in the late afternoon. I snapped this shot and it’s one of my favorites from the week. The kids and Clarke were still in the pool and I was standing on the balcony above.

I will hang this in my office to remind me that clouds and rain may come quickly, but the sun will always return, even if it takes a little while.

Notes from Jamaica

April 20th, 2012 § 11 comments

The other night, in 140 character tweets, I made some comments about my past few days on vacation in Jamaica. I noticed that two tweets especially received lots of replies and lots of “favorited” status.

Two simple sentences that captured so much of what I’ve been thinking about this week.

The tweets read:

Folks, these were the days I fought for during chemo. This time is my reward. These days with my family are priceless.

It doesn’t mean I don’t complain, or have bad days, or get frustrated with my kids. Life isn’t perfect. But I try to appreciate all I can.

breakfast

the simple geometry of a beach umbrella

open door policy

pool steps

I took many photos this week which you can see now on Instagram (my username there is AdamsLisa). I’ll be posting my favorites here occasionally in the weeks ahead, and probably next winter when we all are craving some views of sunshine and palm trees.

I am grateful to Clarke for working hard each day to pay for the trip, to my children for being the individuals they are who make me smile, laugh, and go to the computer to Google answers to endless questions. I always appreciate their hugs and kisses and sense of wonder and enthusiasm for life. I know these days with them are fleeting.

Life is fragile. I know it.

I am treasuring these last hours here in Paradise.

re-post of “Still the best policy: being honest with your children about cancer”

April 19th, 2012 § 2 comments

This blogpost came up in conversation recently so I’ve decided to re-post it. While there may be exceptions, in general I firmly believe it’s important to be open and honest with children about serious illness (in my case it was cancer). Not only is it important to explain it to them to de-mystify illness, it can also be crucial that children be aware of the condition in case of emergency. For example, if a child is alone with a parent who has a medical condition and the parent loses consciousness or injures herself, the child can call 911 and provide important information about what might be the cause for the problem. Similarly, people with metastatic cancer may have daily medical issues that are ongoing. Chemotherapy that is chronic, repeat surgeries, severe side effects, and more frequent tests and appointments may mean hiding a diagnosis is probably not even an option. Metastatic cancer patients may view withholding information as a luxury they do not have.

Using the real words to name our diseases/conditions can also be important for children’s knowledge of their family medical history. I have heard stories of women diagnosed with breast cancer who only learned of a family history of the disease after their own cancer was diagnosed. Only then did information come to light that relatives had also had the disease. Perhaps knowledge of a familial history of the disease would have been useful at an earlier time and monitoring could have begun sooner.1

…………………………….

I met a woman who told me something shocking.

It wasn’t that she’d had breast cancer.
Or had a double mastectomy with the TRAM flap procedure for reconstruction.
Or that she’d had chemotherapy.

What made my jaw literally drop open was her statement that she has never told the younger two of her four children that she’s had cancer.

Ever.

Not when she was diagnosed.
Or recovering from any of her surgeries.
Or undergoing chemotherapy.

She never told them.
To this day– five years later– they do not know.

I like to think I’m pretty open-minded. But I confess, it took a lot of self-control not to blurt out, “I think that is a big mistake.”

I’m a big believer in being open and honest with your children about having cancer. My caveat, using common sense, is that you should only give them age-appropriate information.

When I was diagnosed with breast cancer Tristan was six months old. Of course he didn’t understand what cancer was. Colin, age 5 at the time, understood some of what was happening. I explained to him what cancer meant, that I was going to need surgery to take the cancer out, where the cancer was, what chemo was, what it would do to my appearance and energy level. Using words like “I will be more tired than I usually am. I might feel sick to my stomach and need to rest more” explained things in words he could understand.

Age 8 and the oldest at the time, Paige understood the most when I was diagnosed. She had bigger questions and well as concerns about me (“Will I get it too? Who is going to take care of us? Are you going to be okay?”).

It’s not that I think small children always understand everything. But they are certainly able to sense that things are not “normal.” They can tell when people are acting strange. I think it’s important that they know there is a reason for that change. Children have a tendency to be egocentric; they think that everything is their fault. They may think they have done something wrong if everything at home feels different.

The woman told me she didn’t want to worry her children. She thought it “unnecessary” to tell them. She said when they got older she would explain it. I argue that by keeping her cancer a secret, she runs the risk of doing the opposite: making cancer seem scarier and more worrisome.2 If children hear words like “cancer” casually in conversation as they grow up they will be comfortable with them; in that way, they won’t be frightened of them. If they understand the truth of the diagnosis and treatment they are dealing with reality. By hiding the truth, the unintended consequence is to make it seem worse than it is. By not telling children, and waiting until they are older, it reinforces the idea that cancer IS something “big and scary.” After all, if it weren’t, you would have told them already.

I think being secretive is a step backward to the days when cancer was only talked about in hushed tones: the “C” word or “a long illness.” These concepts might seem primitive to us now, but it wasn’t long ago that these vague labels were the norm. By showing our children, our friends, our neighbors, that we can live with cancer, live after cancer, we put cancer in its rightful place.

To me, the deception that goes on to lie to children about where you are going, what you are doing is lying about a fundamental part of your life. Cancer isn’t all I am — but it is a part. And it’s an important part of my medical history. If for the past 3 years I’d covered up where I was going and what I was doing, the web of deceit would have been extensive. I can’t (and won’t) live a life like that.

Further, I think it’s a poor example to set for my children.

Lying,
covering up information,
and omitting important information are all wrong.

With rare exception, the truth is always best.

Presented in the proper way,
commensurate with a child’s age,
a difficult situation can be not only tolerable but surmountable.

It takes work. It takes parents who can manage not only their own emotions about having cancer but also be involved with helping their children cope with it. It’s more work, but it’s worth it.

I think that woman made a mistake. I think her decision was harmful. I am sure she thinks she was doing her children a favor. I totally disagree. I think keeping this type of information from children “in their own best interest” is rarely– if ever– the right thing to do.

usually screening recommendations are different if there is a family history [↩]
She decided to tell them that she was Christmas shopping, not staying in the hospital to recover from surgery. She made up reasons why her torso hurt and why she couldn’t lift them or heavy objects [↩]

Baby bear’s chair: tolerance for ambiguity in finding the amount of cancer follow-up care that’s “just right”

April 13th, 2012 § 10 comments

In the past few weeks a flurry of news articles discussed the topic of overtreatment in medicine. From both sides, suddenly, we are hearing physicians (“Doctor Panels Recommend Fewer Tests for Patients”) and patients (“Do Patients Want More Care or Less?”) proposing what seem as a controversial idea: less care may be, and often is, better.

My thoughts on this topic stem from a variety of influences: my father spent his career as a cardiothoracic surgeon and now is editor of the Journal of Lancaster General Hospital. My mother spent her career as a psychologist. I have a graduate degree in sociology. Five years ago I was diagnosed with stage II breast cancer. I have a son with congenital defects in his spine and hands.

I list some of these influences because they are important sociological variables and have surely affected the way that I think about this subject. It is often the case that anecdotal evidence supplants cumulative scientific data when people make decisions; that is, if you or someone you know has had a certain experience, that information will weigh more heavily into your thought process than knowing what “the statistics show.”

When I underwent a double mastectomy and completed chemotherapy for my breast cancer, my two oncologists and I sat down in separate meetings to discuss the always stressful: “What now?” I had hormone-receptor positive cancer (breast cancer that is “fueled” by estrogen and/or progesterone) so I was able to take adjuvant therapy.1 I opted to have my ovaries removed even though I am BRCA-1 and 2 negative.

But what about screenings? After my double mastectomy they told me I wouldn’t get mammograms anymore. I would, however, do “tumor marker tests” that measure levels of antibodies in the blood. They are not very reliable, and therefore are not good screening devices. This is why they are not yet used for the general public and some oncologists don’t even use them. The tumor marker tests can sometimes show if cancer has returned before other symptoms show. Because the tumor marker tests are done via routine bloodwork, the tradeoff seems acceptable to us. The tests are relatively benign. When it comes to other testing, however, the bigger discussion started with my oncologists.

What about PET scans?2 Chest x-rays?

Discussions about screenings and testing are negotiations of sorts. As the new research and guidelines indicate, doctors and patients are often at odds on how much monitoring is “just right.” I propose that one of the most important variables in this discussion has been overlooked: the psychological ability of the patient to tolerate ambiguity. That is, I believe there are some people who can live with uncertainty better than others, and the amount of uncertainty a patient can accept in his/her treatment should be an important consideration in current discussions about overtreatment of patients.

The decision to have a prophylactic mastectomy on my right side, for example, was in part made because I didn’t want to worry about getting a new primary breast cancer on my other side.3 Some consider this decision controversial and I’ve spoken about my thought process here in USA Today with a followup to critics here.

Screenings are not always benign. While blood tests may be considered simple, they still cost money. Mammograms, x-rays, CT scans, and PET scans all expose the patient to radiation in varying amounts. Many patients are not aware of the relative radiation exposure that screening/diagnostic tests pose. For example, a chest CT provides nearly 200 times the amount of radiation as a two-view x-ray of the chest. A helical abdominal/pelvic CT provides the same amount of radiation as twenty 4-view mammograms (full article here).

My oncologists were quite clear five years ago: there would be no PET scans for me. I worried: after all, shouldn’t I be monitoring my body for any residual cancer? In my particular case, they were adamant: no (of course there are many cases where this risk-to-benefit ratio is different and PET scans are necessary. There are many factors used to make this decision). These decisions are not solely about radiation exposure; they also take into account how likely tests are to yield false positive results on a PET scan.4 There are many reasons why areas may “light up” in a scan, arousing suspicion. If any areas do light up, this could provide more anxiety and opportunity for additional testing, most often unnecessarily. Not every suspicious area can be biopsied, and you can’t biopsy every time something lights up. Instead, watchful waiting with a keen eye to symptoms of potential recurrence is what we’ve determined is best. I do get a chest x-ray each year. I do tumor marker tests. I follow up with my physicans if there is pain that doesn’t resolve (which can sometimes be a symptom of a cancer recurrence).

I’ve taken a different approach in the past few years with tests not only for myself but also for my children. I always ask “Is this really necessary? Is it important? Does it need to be done this often?” This is not to say that the test won’t happen. I’m not arguing with the providers. But discussing these topics is important. Frequently, tests or screenings are suggested with a time range and now, with with some tests, if screenings have been clear in the past, longer intervals may be used in the future (Pap smears, dental x-rays, etc.). It is worth reading about some of these options and talking to your doctor/dentist about them.

Research shows that antibiotics are not needed (and no more effective than placebo) for many common illnesses like bronchitis, sinus infections, and ear infections. Yet, patients often clamor for them.

As I talked about in the USA Today interview/response piece, there are many factors which come into play when deciding what surgery one wants to have and what level of follow-up care is right for patients. This determination is one that a doctor and patient must come to together. Each must rely on the other to help navigate the murky waters of staying healthy. That said, our healthcare system does not often allow for such conversations to occur and does not reward doctors for the time needed to have in-depth conversations with their patients. Further, physicians are still concerned with liability if they opt to reduce testing on a patient and they miss a problem.

One variable that I think will help doctors and patients come to a more mutually satisfying relationship is a determination of the patient’s tolerance for uncertainty. With this information, physicians can identify more pointedly which levels of acute treatment and long-term follow up care are both psychologically acceptable to the patient and medically reasonable.

adjuvant therapy referes to drugs taken after chemotherapy to block the effect of the hormones… for pre-menopausal women this would be a drug like Tamoxifen, for post-menopausal women an aromatase inhibitor like Arimidex [↩]
Positron Emission Technology scans require a radioactive dye to be introduced into the body via IV that is then absorbed and monitored. It can be used for a variety of purposes but is freuquently used to try to identify tumors in the body [↩]
even though I was told the statistical likelihood was the same as that of getting breast cancer in the first place. I decided that those odds hadn’t been in my favor once before. Part of my decision was made for aesthetic reasons of symmetrical reconstruction, but part was made to avoid mammograms and biopsies in the future. In the end, pathologists found dysplastic cells in my “healthy” breast so maybe being proactive was a better decision than I even knew at the time [↩]
a false positive result is one which indicates there is a problem when in fact, one does not exist [↩]

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