Walking In, Walking Out

December 20th, 2010 § 0 comments

Originally posted March 11, 2010 on www.lisabonchekadams.com

In the wee hours of the morning yesterday I gently nudged Tristan from his deep slumber. At 5:15 we were in the car, headed out for the 2.5 hour drive to Philadelphia’s Shriners Hospital to see his hand surgeon.

These trips are always big ones to me. In the first two years of Tristan’s life we focused on his neck problems. With most of his cervical vertebrae only half-formed or fused together, we knew that we’d be told at these visits whether the curvature in his neck had worsened. At one point we were right on the border of intervention. He’d reached the maximum degree tilt of his head; if it went any more, he’d have needed surgery to insert rods and fuse his vertebrae together to straighten the neck permanently. It would have been big.

To us.

But whenever we go to Shriners we see other kids with orthopedic issues. Some are very serious. The most serious. Because the hospital specializes in pediatric orthopedic problems it is a magnet for complicated cases.

It is always humbling to walk into Shriners. Literally to walk in. Many, many children are wheeled into the hospital, unable to walk. A little baby lay in her car seat without any visible problem. But I knew that her sheep-covered blanket hid an abnormality that had brought anxious parents here.

Tristan had his pre-op appointment. He loves his surgeon; Dr. Kozin has an amazing bedside manner and got right into a great chat with Tristan when my son boldly announced as the doctor walked in, “I burped! And then I shivered!” Gee, I was so proud.

We got all of the details about Tristan’s tendon transfer surgery at the end of the month. Because we didn’t need to see his spinal team or get any x-rays, we were able to be back on the road by 10:15 to come home.

Before we left I stopped at the soda machine. I let Tristan put the money in and press the Diet Coke button. A little boy approached and his father hovered behind, watching him.

“What’s wrong with your son?” he said in that way that people who wait in waiting rooms together say.

“He’s got problems in his neck and thumbs.”

The father announced, “Our son has 7 fingers.”

I looked down, expecting to see 7 fingers on one hand. Instead, he had a perfectly-formed left hand, but his right hand was crab-like, with a thumb and a pinkie, but nothing in between but a wide expanse. “He can do everything with it,” the father said, gesturing at the hand.

He was beaming. Beaming. He was so proud of his son, about 3 years old. And he should have been. While some people might have been sad, or ashamed, this father delighted in his son’s accomplishments and accommodations to his physical abnormality.

Children are so resilient: I say it all the time. My son has taught me so much, made me more observant, more aware of life in so many ways. I am thrilled that the most horrific diagnoses and prognoses we were told about his mental development did not come true. His problems are only physical.

Last night, my Twitter friend Kathleen said that a pediatrician had told her, “Kids think about the things they can do, not what they can’t.” I loved that. It’s true. When kids realize the things they can’t do, their concern is only to find a new way to do that same thing.

I love the folks at Shriners Hospitals. They do amazing work in their network of hospitals for orthopedic, spinal cord, and burn injuries on children. They do not take any money from patients for any services they provide.1 If they accept your case (judged only on the specific problem your child has, and whether they are uniquely suited to help fix the problem, not on economic status) you will never pay a cent for services. I can’t ever resist giving a plug for them because we appreciate their care so much.

We were lost and scared and seeking information when we found out about Tristan’s problems. We’d never heard of spinal fusion surgery and had no clue what we might be in for. To have a surgeon say, “I know what the problem is. I have seen other children with this. If it needs to be fixed I know how to fix it.” Well, those are the words you hang on to as a parent.

In the car on the drive home it hit me how tired I was. I nodded off while Clarke drove and heard Tristan saying, “I want to go back to see Dr. Kozin.”

That’s music to my ears. His ability to be in and out of hospitals, doctors’ offices, and deal well with anesthesia will all help him in his life. With a heart surgeon as a father, and surgeries myself that started at age 5, I’ve never known a time I haven’t been comfortable in hospitals. When I got cancer it served me well.

I wish Tristan hadn’t had these problems, but he does. This is his life. The more comfort I can instill in him about medical care, the better. I think it’s a wonderful life skill to have.

So we have a few weeks until the hand surgery… and then Tristan will get his wish and get to see his surgeon again. We’ll see how he feels about him afterwards…

(to read the next few chapters in Tristan’s hand surgery story please click here)

………………………………………………………………………………..

Original comments appear below

March 11, 2010

7 comments

Stonecutter099

I do a regular search for items on Twitter related to Shriners and by doing so came across your post about “Walking in, Walking Out”.

Thanks for posting this on your blog.   I am a Shriner in Edmonton, Alberta, Canada.   Posting stuff like this helps to keep Shriners active – knowing that there’s actual people out there with names, instead of being fed stats that the hospitals helped X amount of children last year and spent X amount of dollars.   If they actually get to see the progress that you’ve documented, it means much more.

Hope you don’t mind – I’m now one of your twitter followers.

Thursday, March 11, 2010 – 03:17 PM

Sarah

Tristan is an amazingly strong boy.  It obviously runs in the family!

Thursday, March 11, 2010 – 04:06 PM

cay0730

I love these posts about your family.  As a childless 40ish person, I love this inner view on the parent-child relationship, and the bond of love that’s beyond anything I can imagine.  While the decision was right for me, I honor and admire people who go to the ends of the earth to guide their children through every step of life–good and not-so-good.

Thursday, March 11, 2010 – 06:29 PM

mrswhich

I wish that Tristan and my son could be friends – he sounds like an amazing person. No need to wonder why.

Thursday, March 11, 2010 – 09:59 PM

Delia

Touching, thoughtful post! Wonderfully written!

Thursday, March 11, 2010 – 10:37 PM

Theresa

Your post so hit the mark on so many levels. You and I know that children are far stronger than us because we have seen them face problems that most adults can’t handle with such grace and dignity.  I always try to remind people of that.  When Catherine was diagnosed, I wondered how the doctors could do their jobs with a smile on their faces everyday.  It didn’t take me too long to realize that their patients were an inspiration and they drew from that strength.  I’m sure everyone at Shriners feels the same way.

Friday, March 12, 2010 – 08:11 AM

KCM

I second Sarah’s comment

Friday, March 12, 2010 – 01:14 PM

  1. only this year did they start accepting third-party payments from insurers. If you do not have insurance or there is money owed after the insurance payment they will write off your balance [↩]

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No Matter What, It Matters (The Psychological Importance of Hair)

December 17th, 2010 § 6 comments

originally published September 12, 2009

My friend Andrea found out she needs to have chemo. I cried a lot the day I found that out. Last night she emailed me that she was thinking about the whole “losing her hair” thing. She has gorgeous hair. Thick. Straight. Reddish-brown, in the sun I’d say it has a honey shine in it. She usually wears it back in a ponytail, as she says, “taking it for granted.”

I started writing her back to tell her that focusing on her hair wasn’t silly. There are many things about cancer that are real worries. One of them is going bald. Especially for a woman. And as I typed to her I realized the words were flowing fast and furious.

I realized all the things people had said to me when I was worried about losing my hair and all of the things people had said to me after it eventually happened.

Everyone wants to reassure you that it isn’t as bad as you think it is.
Some days you convince yourself it isn’t that bad.
Some days you are sure they are all lying to you.

Either way, you get through the days.
The day you take that hat or wig or scarf off and wear your newly-grown stubble or “mouse fur” out in public is a great day (My first hair was so fine and soft and thin that it didn’t resemble hair at all… I called it mouse fur because while it blissfully covered my head and was dark, it couldn’t be cut or styled).

So, for my friend, and for other women who are getting ready to start chemo (and those who bravely walk through the world every day without hair because of alopecia and other conditions), no matter what, it matters.

No matter what anyone says…
all the things they will say:
It’s only hair.
It’ll grow back.
You’ll look so pretty anyway.

With a face like yours it won’t matter.
We’ll get you a cute wig.
We’ll get great scarves.
It’ll grow back in no time.
Maybe it’ll be better after it grows in.

It might be curly.
It might be straight.
I know someone whose hair came in gray.
I know someone whose hair came in red.
I know someone whose hair came in black.
I know someone whose hair came in white.

Hers came in curly.
Hers came in straight.
Did you see hers?
It looks great.
Did you see hers?
It looks awful.

I like her better with short hair.
I liked her better with long hair.
You’re gonna look great.
I don’t know what I’d do.
I don’t know how you do it.
I don’t know how you’re gonna do it.

You are so brave.
You are so strong.
You can do it.
You can beat this.

No matter what anyone says–
It is just going to suck.
Bigtime.

You may shed many tears over this one.
It may be harder than you thought.
I’ve heard brave women say it was harder than the actual chemo.
Reports show women actually turn down the chemotherapy they need because they don’t want to go bald.

It’s real.
It’s hard.
If it weren’t,
Women wouldn’t cover their heads.
They would just walk around bald.
They wouldn’t care.

But hair matters.
To us,
To our kids,
To our husbands,
To our friends.

My hair has never been the same since chemo.
I’m not alone in that.
In fact,
My hair now grows “the other way”…
My part is on the opposite side of my head than it used to be.
I think that’s kind of neat.
There’s the way my hair was B.C. (before cancer)
And the way it is now.

It is a big deal.
Don’t let anyone minimize it.
If they do, make them go shave their heads.
Not just clipper cut.
Straight razor shave it until there’s nothing left.
Then the eyebrows.
Then the eyelashes.
And then the stuff they might not think about.
Every piece of body hair.
Of course there are jokes.
And giggles.
The Brazilian wax done for you.
It’s funny.
But not so funny.

Then when your nose hairs fall out you suddenly realize how
Much you needed them.
Your nose runs constantly.
And it’s embarrassing.
Mine dripped clear liquid constantly.
I was so embarrassed.
No one had told me about that part.
I had a tissue stuffed in every pocket.
Because there were no hairs to stop the drip.
Chemo drip.

You try to imagine what it will be like.
You try to picture what you will look like bald.
You pull your hair back,
Slick it back,
Try a wig on to see what it might look like.
But nothing can prepare you.
For that crappy day,
Two weeks in.
When you scratch an itch
Or touch your head
And take away a handful of hair
Or find it on your pillow.
And the sight of it is so sad,
But so disgusting
So repulsive,
That you need it gone.

And then if you need me
You will call me.
And I will come.
And I will cut it.
Or maybe I will just come and cry with you.
And remember what it felt like.

No matter what anyone says,
It isn’t nothing.
It is something.

And even in the scheme of all of the things to be afraid of with cancer,
How you feel about losing your hair is real.

It matters.

And I remember.

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Do your friends and relatives buy+read your book(s)?

December 16th, 2010 § 6 comments

Last night I posted a piece asking “Do your friends read your blog?” and was thrilled to read all of the answers (if you haven’t commented there, please do). I’m very interested in this subject and it’s spurred another question (as most good questions do).

Published authors: do your friends and relatives buy and/or read your books? I don’t presume that buying equals reading. I am interested in the relationship between social proximity and likelihood of purchase and reading.

Did your mother buy 50 copies and give them out at Christmas? Did she expect you give her free copies instead? Did your friends rush out and buy it or did they figure they’d been there along the way and didn’t need to? Does it depend on what kind of book it is? Did they buy it but then not actually read it and figure they showed support by purchasing?

What about Facebook friends? Twitter friends? Local friends?

Looking forward to hearing your stories on this one.

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Do Your Friends Read Your Blog?

December 15th, 2010 § 24 comments

Some of my friends read my blog. Some of them don’t.
My mother reads regularly. My father only reads if I send him a specific link or if my mother tells him about a post. He says it’s often too hard for him to read my posts– they are too raw, too personal. It’s a window into my suffering and he doesn’t want to see me experience so much pain.

Some of my friends find it educational to read about the experiences I’ve had whether it’s to learn about me or learn about the subjects I write about. Some friends find it an easy way to keep up with me in the midst of our busy, family-filled, hectic lives. Friends that live far away subscribe or check in every so often to catch up on how I am and what issues are the current focus of my attention.

But what about those who don’t read the blog at all? I have many friends who don’t. There are many moms I see on a daily basis that don’t even know I have been writing here for 3 years.

One of my closest friends said she almost never reads it because she wants to hear it all from me in person. She wants the opportunity to hear about my thoughts and activities without having to learn by reading on a screen. To her, it’s almost like snooping on my life when she would rather knock on the front door and come in for a visit.

For other people, I think it’s just not their cup of tea; my writing style, subject matter, or format just aren’t appealing. They might like me, they just don’t like this.

There are other explanations, of course, but I am interested to hear from those of you who have blogs: do your friends and family read it? Do they comment to you about it/bring the topics up in conversation? Are your feelings hurt if friends don’t read your work? And does your spouse or partner read your posts? Does he/she comment? Bring it up at the dinner table?

I can’t wait to hear your thoughts on this topic.

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Next

December 15th, 2010 § 1 comment

5.2.2009

He caught me before I could put on my bright smile, restore the gleam in my eye, the flirt in my face.
He caught me lost in my disconnect, my swimming, floating, drowning.

“Are you okay?” he asked gently.
So gently I almost didn’t hear.
So gently it didn’t rouse me.
I stayed in that liminal state, half awake, half asleep.
Dozing in daylight.
Autopilot.
“I’m fine, thank you. Just tired,” I covered.
“I just wondered,” he said. “You don’t seem like yourself.”
“Thank you. Thank you for worrying. That’s so kind.”

Am I so transparent, I wondered. So transparent that this man who doesn’t even know my name can tell without a word when I’m not feeling well?

I turned my attention back to him.

“How can I help you?” he asked as someone approached and interrupted our conversation.

“Muenster cheese, please,” I requested of him. “A half pound.”

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Empty Space

December 13th, 2010 § 4 comments

Clarke and I attended a family wedding this weekend. One of his first cousins got married and my parents stayed with the kids while we drove to the event. Four of Clarke’s brothers and sisters attended and we were able to see many family members we hadn’t seen since the memorial service for Barbara a little over a year ago.

Barbara’s three sisters were there, of course, and one of her brothers. It’s a large family and we all have a great time visiting when we have occasions to see each other. It was fantastic to have a happy reason to gather; so often as we age it seems we only see each other to mourn.

And while we were happy, while we loved seeing a young bride and groom start their lives together, we couldn’t help but ache every moment for the special one who was not there. Barbara’s absence hung over the weekend. For the first time since she died I didn’t have to distinguish one “Mrs. Clarke Adams” from the other. We’d had the same name for the last 13 years and over the weekend I missed the confusion it often gave us at check-in time or seating assignments for dinner.

It wasn’t until the groom danced with his mother (Barbara’s sister) that the emptiness became overwhelming. This particular sister resembles Barbara the most: her eyes, her expressions, her hair. And as she danced with her son we all could not help but cry: my youngest brother-in-law, still in his 20s, would not have that dance with his mother when he gets married.

I talked about Barbara a lot this weekend; I couldn’t help it.

My anger is still here: she should be here enjoying these things. It is someone else’s fault she isn’t (see here for original newspaper piece and here for my piece about the court hearing). Somehow, to me, that makes it worse. Her body didn’t fail, she didn’t get a disease. Someone made an egregious decision and she paid the price with her life.

I’m not over that anger and I don’t think I ever will be. Every happy event is one we are not sharing with her. And while no one’s life can go on forever, when it’s taken without warning and too soon it takes time to adjust to. It’s too much to swallow in one gulp, and this bitter taste is dissolving very slowly. This weekend was hard. Christmas, which has always been synonymous with Barbara, is going to be even harder. I know there are many people reading this who are grieving losses this year, and the holidays are always difficult. My heart goes out to you all.

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Just a spot (the court hearing)

December 13th, 2010 § 1 comment

Originally published on www.lisabonchekadams.com on March 9, 2010

Now that I have been writing this blog, family and friends sometimes ask me to write something and speak at special occasions. Yet, earlier today in court and at Barbara’s memorial service a few months ago I remained mum.

While my love for her is obvious, my respect, my admiration, my sense of loss, I remained an observer while the truck driver who came into my in-laws’ lane and hit them head-on appeared in court today for his change of plea hearing.

Family members are allowed to read victim impact statements. Spread across the entire back row of the small Western courtroom we sat in wooden pews. Her six children, her husband, one son’s girlfriend, and me.

The nine of us sat as an army.

Wearing somber colors, we sat clutching tissues.
We cried.
We squirmed.
We jiggled our legs with nervousness and anticipation.

We stared at the back of that truck driver’s head.
We stared at the back of his sister’s head.
His mother’s. His father’s.

At some point when the judge was deliberating I couldn’t take it anymore.

And then I did something that’s become routine for me.
I picked a spot on the ceiling and I stared at it.

I’ve come to do this as my coping mechanism for pain,
for feelings of claustrophobia,
for enduring the seemingly unendurable moments
I’ve had so many of the past few years.

When I’ve been in pain,
in agony,
sick,
nauseated from chemo,
embarrassed during procedures,
I pick a spot on the ceiling.

And I don’t let it go.
I don’t let my gaze waver.

In some medical offices I visited repeatedly I used the same spot:
A sticker on the ceiling indicating a light switch,
A brown spot from water damage,
An intersection of metal latticework that if I stared hard enough
seemed to have a dot in the middle.

And so today,
when it seemed the plea bargain
would not, could not, be changed,
tossed,
reconsidered, or
modified,
I picked my spot.

I picked my spot and did not let it go.

I heard the sniffles,
the sobs,
the exhales of my loved ones realizing the punishment that seems so inadequate would stand.

My brothers and sisters-in-law didn’t need my words today.
Theirs were so poignant,
so heartbreaking,
so true.

While the words swirled inside my head,
this was their day to describe their pain.
While I come here and do it weekly,
it was their turn today.

I was so proud of them.
Barbara would have been so proud too.

That’s the irony, of course:
their finest moments,
their displays of character and strength,
have come to the forefront in her absence–
because of her absence.

And everywhere we go people say
that her six children are a testament to the mother she was.
And they are.
A family unit so strong,
so united,
so bereft at her loss.

Twice today we drove on the very highway where the car crash happened.
Twice today we crossed the very place where she last lived.

And as we approached the spot both times I sat in the moving car and waited.
I waited for there to be some type of shift,
some type of energy.
Some kind of
SOMETHING.

But it was just road.
Just pavement.
Just a place on a road.
And both times I could not accept it.

It did not seem real.
Our lives changed on that spot.
Her life ended on that spot.

In the middle of the expansive countryside dotted with wind turbines and packs of mule deer
dearest Barbara departed this world.

I can’t write enough words for her.
I can’t capture the ache and sadness I feel.
Not only for myself–never only for myself– but so much for my children…
for all of her grandchildren who missed years of knowing her,
many of whom will never know her.

I’ll never write much of what I want to say.
I won’t put it here where it could be painful for those who miss her and love her.
I can’t write everything I want to about the man who did this.
I don’t want to undermine any future court activity.

Sometimes the hardest thing is knowing when to keep quiet.
I’m working on it.
Truly.

Tonight I fly thousands of feet in the air
as the plane shakes and trembles
with turbulence.

And while I hate to fly
I wouldn’t have been anywhere else today.

So while the plane lurches a bit
I’m going to turn off the computer,
pick my spot somewhere on the ceiling,
and I’m going to stare at it.
And I’m not going to let it go.

Because I can get through this.
I can.
I can get through this.
We can.

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My Interview in The Washington Post: Elizabeth Edwards and the Cancer Question

December 8th, 2010 § 6 comments

Today I was interviewed in The Washington Post about my perspective on the news of Elizabeth Edwards’s death. Melissa Bell’s article is entitled  “Elizabeth Edwards and the cancer question.” Click on the title to read the piece on the Post website.

Thanks so much to all of you who read the two pieces I wrote about Ms. Edwards and passed them on to friends:

On Resilience and Why I’m Crying.

Your comments mean so much.

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On Resilience: Thoughts on Elizabeth Edwards, my mother, and me

December 7th, 2010 § 12 comments

Doctors diagnosed my mother with breast cancer the exact same day Elizabeth Edwards heard those words in November, 2004.

Two years later, I too received a diagnosis of breast cancer.1

After my diagnosis I went for consultations with two oncologists. Each doctor handed me two pieces of paper displaying bar graphs of the risk of my cancer returning and the risk that I would die from my cancer. These risks were broken down and calculated for four separate conditions: 1)  if I did nothing, 2) if I received chemotherapy, 3) if I received hormonal therapy, and 4) if I received “combined” therapy (chemotherapy + hormonal therapy). On the top of the stark white pieces of paper in my doctor’s writing it says “Survival” on one and “Recurrence” on the other.

I made my decision rather easily: to treat my Stage II cancer I opted for a double mastectomy2, chemotherapy, and adjuvant hormonal therapy3. I had a husband and three young children; I wasn’t taking any chances– I would do whatever it took to get me into remission and give me the best possible chance of survival.

My mother, because of the particulars of her Stage III cancer opted for a lumpectomy, radiation, and chemotherapy.4

And so, my mother and I had different treatment plans. But while our treatment protocols differed, we both required the same character trait to get us through: resilience. Appropriately, this is also the title of Elizabeth Edwards’s book.

Resilience has carried me through my mother’s diagnosis and mine. My son Tristan’s surgeries and treatments for congenital spine and hand deformities. The sudden death of my beloved mother-in-law in a car crash one year ago.

Resilience is the ability to bounce back, the ability to find strength and reserves when you think there are none, the guts to wake up each morning and, knowing something else might be just around the corner, say, “Okay, world, bring it on. I can take it.”

It’s also the manner in which you take it. Do you feel defeated? Resigned? Depressed? Angry? Do you channel those negative emotions into something positive?

Some people believe that negative things like cancer and grief are gifts. Books I’ve seen preach that you should change your thinking: these events are not traumas or tragedies; they are gifts, positive intrusions into your life.

I don’t think so.

I don’t think cancer is a gift.
I don’t think grief is an opportunity.

I think these things suck.
I think they hurt.

There’s a difference between thought and action: what you do with those feelings is what counts.

People don’t need to have the same beliefs or think the same way to feel a magnetic pull to one another.

Resilience is like a magnetic pull to life, a force that keeps me coming back for more
with grit,
determination,
heart,
hope.

Resilience whispers in my ear,
“You can do it.
Just keep going.
One foot in front of the other.

It will get better.
And, if it doesn’t, well…
you can take it.
Bring it on.”

Elizabeth Edwards reached many people because she was in the public eye, but inspirational people also live quiet lives. We can be inspired by Edwards’s grace and courage as she dealt with the challenging parts of her life in the same way we can find inspirational people around us each and every day. These are all people we can connect with and learn from. In doing so, we better ourselves. In doing that, we honor their struggle.

My mother is alive, and in remission. And the joy that I feel about having my own mother here is shared in equal measure by the sorrow I feel for Ms. Edwards’s three living children, Catharine, Emma Claire, and Jack, over the loss of their mother.5

  1. genetic testing later showed I do not carry the BRCA-1 or BRCA-2 genetic mutation [↩]
  2. I also opted for recontruction with silicone implants [↩]
  3. first, Tamoxifen, then later, after surgical removal of my ovaries and Fallopian tubes, Arimidex [↩]
  4. because her cancer was HER-2 Neu positive she also received Herceptin [↩]
  5. her 4th child, Wade, died in a car crash in 1996 [↩]

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Why I’m crying (Elizabeth Edwards died today)

December 7th, 2010 § 5 comments

I didn’t know Elizabeth Edwards. In fact, I wrote a piece critical of her when she initially stood by John after his affair. I was disappointed when she gave an interview on CNN in May of 2009 and spoke only of John’s “imperfection” rather than calling him the cheater he was and kicking him to the curb. I was angry she hadn’t used her interview time to talk about herself, her cancer, her life: the topics I wanted to hear about. I was angry at her for not claiming her remaining years of life as her own.

So why am I sitting with tears in my eyes because she has died?

I cry because it makes me feel vulnerable and scared of what this disease can do to me: what it did to her.

Yes, I know… there are plenty of men and women who get cancer, have treatment, and stay in remission for the rest of their lives. And, in essence, isn’t that what every cancer patient hopes for, as Betty Rollins wrote, “to die of something else”?

I don’t think it makes me pessimistic, depressing, or negative to think that I am vulnerable.

It’s the truth. It’s my truth.

Anyone who hasn’t been to the oncologist with me to see my risk-of-recurrence charts, my mortality charts, my decision-making discussions along the way can’t say to me “Oh, don’t worry, that won’t be you.” No one, including me, knows how it will go.

People tell me: stay strong, just think positive, you can’t generalize from her situation.

I respond: I am strong, I hope for the best. I don’t think positive thinking is going to save me if there are remaining cancer cells still in me.

I hope that people won’t say to someone who has been diagnosed with cancer, “Don’t worry, what happened to Elizabeth Edwards won’t happen to you.” Because while we do everything we can to ensure we die of something else, it just isn’t always the case. In 2006 her oncologist told her that there were many things going on in her life, “but cancer was not one of them.”1 Things change quickly, cancer can recur when you least expect it.

I have sympathy for her family. I cry for her children. I am saddened about the years she spent with a man who didn’t deserve her. I am angry about the time she wasted on him. I hoped she would be an example of someone who would keep cancer at bay.

I grieve for that hope, now gone.

  1. http://www.dailykos.com/comments/2006/11/20/144410/37/59#c59 [↩]

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The Real 12 Days of Christmas

December 4th, 2010 § 6 comments

The original 12 Days of Christmas is outdated and unrealistic. This is what you are more likely to get:

On the first day of Christmas the holiday gave to me a needle-dropping Christmas tree.

On the second day of Christmas the holiday gave to me two ear infections and a needle-dropping Christmas tree.

On the third day of Christmas the holiday gave to me three flight delays, two ear infections, and a needle-dropping Christmas tree.

On the fourth day of Christmas the holiday gave to me four lost suitcases, three flight delays, two ear infections, and a needle-dropping Christmas tree.

On the fifth day of Christmas the holiday gave to me… five extra pounds! Four lost suitcases, three flight delays, two ear infections, and a needle-dropping Christmas tree.

On the sixth day of Christmas the holiday gave to me six teachers’ gifts. Five extra pounds! Four lost suitcases, three flight delays, two ear infections, and a needle-dropping Christmas tree.

On the seventh day of Christmas the holiday gave to me seven batches of cookies, six teachers’ gifts. Five extra pounds! Four lost suitcases, three flight delays, two ear infections, and a needle-dropping Christmas tree.

On the eighth day of Christmas the holiday gave to me eight migraine headaches, seven batches of cookies, six teachers’ gifts. Five extra pounds! Four lost suitcases, three flight delays, two ear infections, and a needle-dropping Christmas tree.

On the ninth day of Christmas the holiday gave to me nine barfing cousins, eight migraine headaches, seven batches of cookies, six teachers’ gifts. Five extra pounds! Four lost suitcases, three flight delays, two ear infections, and a needle-dropping Christmas tree.

On the tenth day of Christmas the holiday gave to me ten mall trips, nine barfing cousins, eight migraine headaches, seven batches of cookies, six teachers’ gifts. Five extra pounds! Four lost suitcases, three flight delays, two ear infections, and a needle-dropping Christmas tree.

On the eleventh day of Christmas the holiday gave to me eleven loads of laundry, ten mall trips, nine barfing cousins, eight migraine headaches, seven batches of cookies, six teachers’ gifts. Five extra pounds! Four lost suitcases, three flight delays, two ear infections, and a needle-dropping Christmas tree.

On the twelfth day of Christmas, the holiday gave to me… twelve too-small sweaters, eleven loads of laundry, ten mall trips, nine barfing cousins, eight migraine headaches, seven batches of cookies, six teachers’ gifts. Five extra pounds! Four lost suitcases, three flight delays, two ear infections, and a needle-dropping Christmas tree.

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Guest blogpost for Cancer Bone Health– Standing Straight: Words of Welcome from a Survivor

December 2nd, 2010 § 1 comment

In August, the editors at Cancer Bone Health asked me to write a blogpost for their launch. Today it went up on their new website.

click here to read it:

Standing straight: Words of welcome from a survivor

The profile piece they wrote about me and posted a few days ago appears here.


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Growing Pains and Psychological Stretch Marks

December 1st, 2010 § 0 comments

August 18, 2009

Summers bring change. The end of the summer signals the start of school for children, and for some it’s their first day of school ever. My youngest child, Tristan, will start nursery school in a few weeks. This month has brought the inevitable developmental milestones of potty training and sleeping in a big bed. My oldest child, Paige, will start middle school. She went to sleepaway camp for the first time this summer (and loved it). My middle child lost his first two teeth.

As I sit and watch and listen to the waves on our beach vacation I know the summer is drawing to a close. Some of you reading this are already sending your children back to school.

The months and years go by. Like all of you I mourn the quick passage of time. “Where did the summer go?” I hear my friends asking. Projects we hoped would be accomplished — tasks we hoped would be done — sit unfinished. Organizing photos, cleaning out a closet or a room, or reading that book a friend recommended; many things went undone in the last eight weeks.

Maybe you were lazy, maybe other things came up, maybe you were preoccupied with family obligations. Maybe you had an unexpected cancer diagnosis, maybe you got the flu, maybe your parents’ health was sub-par.

Regardless the reason, there can be a bit of disappointment when summer ends. The children we send back are taller, older, more mature. They’ve had lots of experiences to tell their friends about. Maybe they’re in a new school, maybe they’re now the oldest in school, maybe they’re now the youngest. New bus routes, new starting times, new friends, new backpacks, new teachers.

Some children will be starting back with a new experience to tell their teacher and friends: “This summer my mommy got cancer.” That one will not be an isolated instance, unfortunately; women around the country will be sending children to school with that summer report.

Growth happens in fits and spurts, not with smooth sliding grace.

With each phase comes

pain,

discomfort,

unease.

Restlessness,

sleeplessness,

yearning.

When I had the tissue expanders in my chest to make room for the implants that would replace my breasts after the mastectomies, every week my plastic surgeon would add to them. And each time after a “fill” they would feel tight. The skin would not be big enough for the volume inside, and it would react. The skin would feel the pressure and grow, that was the point of the process. Until the skin could replicate there was achiness, tightness, a ripping or tearing feeling.

A similar sensation happens during the days during pregnancy when you feel your belly just can’t accommodate the growing baby inside it. And yet it does. If it happens too fast you get a stretch mark, a sign your skin just couldn’t keep up. The growth was too rapid, too harsh, too vigorous.

I often wonder if mothers and fathers get psychological stretch marks when we are asked to accommodate changes we’re not quite ready for.

What can we do? What options do we have? None. We must “go with the flow” and do the best we can. Our children grow and change whether we like it or not. We do them no favors by trying to protect them, coddle them, and keep them young. We give them wings to fly when we give them tools to be

confident

and caring

and inquisitive

and trusting

individuals.

I am moved to tears as I watch my children grow.

I am moved by the succession of infancy, childhood, and adolescence.

I know that as a mother I lack many skills I wish I had.

But I also know that the words I have written in my blogs and essays will one day be a gift to them too.

Not a gift to the children that they are, but instead a gift to the adults that I am raising them to be.

Each August or September as they go back to school I marvel that another school year has passed and yet another is here.

I mark time differently now. I mark anniversaries not of weddings, but since diagnosis, since mastectomies, since chemotherapy began and since it ended, since implants, since Tamoxifen, since Arimidex, since oophorectomy. They are not just dates; they have meaning. They are meaningful for doctor visits and tests I must have done and dates I can stop taking drugs and dates I must know for other treatments.

No matter how you measure time it always goes too fast.

The growth happens too fast.

And the growing pains hurt for me.

The stretch marks might be invisible this fall, but they are surely there.

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Profile piece up at Cure Magazine’s Cancer Bone Health

November 30th, 2010 § 4 comments

I spent this afternoon at Sloan Kettering meeting with my consulting breast oncologist. I learned a lot of new information about estrogen loss after my surgical menopause two years ago. I’ll write more about what I learned at that meeting in future days.

I had a long trip home from New York City after there was an engine fire on the train I was riding on. Once home, however, I was happy to discover that an interview I gave for a new website on bone health after cancer was published!

Click here to read the piece.

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Cranberry ice

November 25th, 2010 § 7 comments

After my post yesterday about missing loved ones at the Thanksgiving table, many people were intrigued by the Adams family tradition of Cranberry Ice. I, too, had never heard of it prior to meeting Barbara. Once you’ve had it, it easily becomes a regular addition to your table. I am sharing it here so that others may decide to fold it into their holiday celebrations, too (I think it is a lovely addition to Christmas dinner, so maybe you want to give it a try then).

The way we serve it 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.

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Missing and mourning while others celebrate and complain

November 24th, 2010 § 8 comments

I have many friends who have lost family members this year. My own devastating loss, the death of my beloved mother-in law, was only 14 months ago. The death of someone you love is never easy, but I think holidays are particularly painful times. Not only do you miss the physical presence of the person, but there are often so many reminders of special times you have had together, of traditions you shared.

While we grieve for the physical absence of the person at our family gatherings or the telephone calls we share, what we also grieve is the loss of future time together. That is, we not only grieve the person we’ve lost, we mourn the future events that we will not be able to share with them.

I didn’t spend many Thanksgivings with Barbara; Turkey Day is almost always a holiday spent with my side of the family (Christmas is always spent with Clarke’s family). There were a few years my parents and in-laws both lived in Pennsylvania; back then Clarke and I were able to see both sides of the family in the same Thanksgiving weekend.

Barbara loved to set a good table; she always had special items on the table that had been handed down to her — china, silver, serving pieces. But more than any other Thanksgiving tradition, the one that I associate with her is Cranberry Ice.

Cranberry ice is a sort of cranberry sorbet, an icy, tart, frozen taste sensation. Perhaps originally an intermezzo, it evolved to take the place of traditional cranberry sauce at the table and now is eaten along side the turkey and fixings. Barbara always had special small cut-glass footed bowls to hold it; I haven’t yet found some of my own. Last year, in a loving tribute to her, I made my own cranberry ice for the first time using the food mill she’s put in my stocking years ago. The mill sat unopened in my cabinet until last year. I pulled it out and held it then, realizing as I held it that her own hands had held the package. She had shopped for it, paid for it, put it in my stocking. I touched that plastic container and all I felt was cold. Without her, it wouldn’t be the same.

My daughter (pictured above, ten years ago, with Barbara) will be staying home from school today recovering from oral surgery. I think it would be really nice to make the cranberry ice together, just the two of us, while the boys are at school. Traditions carry on, however painful it is.

It’s important to remember that while some will be complaining about their relatives while spending time together this week, some of us would do anything to have our loved ones back with us to share the day. I feel sure a bit of sensitivity to the emotional turmoil some may be experiencing would be welcomed by your friends or family members who grieve this week.

Every day is hard when you miss someone; a holiday is especially so.


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If You Knew Suzy, if you knew me

November 23rd, 2010 § 1 comment

Originally published June 24, 2010

There comes a point in your life when you realize that your parents are people too. Not just chaffeurs, laundresses, baseball-catchers, etc.– but people. And when that happens, it is a lightbulb moment, a moment in which a parent’s humanity, flaws, and individuality come into focus.

If you are lucky, like I am, you get a window into that world via an adult relationship with your parents. In this domain you start to learn more about them; you see them through the eyes of their friends, their employer, their spouse, and their other children.

Yesterday I sat transfixed reading Katherine Rosman’s book If You Knew Suzy: A Mother, A Daughter, A Reporter’s Notebook cover to cover. The book arrived at noon and at 11:00 last night I shut the back cover and went to sleep. But by the middle of the night I was up again, thinking about it.

I had read an excerpt of the book in a magazine and had already been following Katie on Twitter. I knew this was going to be a powerful book for me, and I was right. Katie is a columnist for The Wall Street Journal and went on a mission to learn about her mother after her mother died (on today’s very date in 2005) from lung cancer. In an attempt to construct a completed puzzle of who her mother was, Katie travels around the country to talk with those who knew her mother: a golf caddy, some of her Pilates students, her doctors, and even people who interacted with Suzy via Ebay when she started buying up decorative glass after her diagnosis.

Katie learns a lot about her mother; she is able to round out the picture of who her mother was as a friend, an inspiration, a wife, a mother, a strong and humorous woman with an intense, fighting spirit. These revelations sit amidst the narrative of Katie’s experience watching her mother going through treatment in both Arizona and New York, ultimately dying at home one night while Katie and some family members are asleep in another room.

I teared up many times during my afternoon getting to know not only Suzy, but also Katie and her sister Lizzie. There were so many parts of the book that affected me. The main themes that really had the mental gears going were those of fear, regret, control, and wonder.

I fear that what happened to Suzy will happen to me:

my cancer will return.

I will have to leave the ones I love.

I will go “unknown.”

My children and my spouse will have to care for me.

My needs will impinge on their worlds.

The day-to-day caretaking will overshadow my life, and who I was.

I will die before I have done all that I want to do, see all that I want to see.

As I read the book I realized the tribute Katie has created to her mother. As a mother of three children myself, I am so sad that Suzy did not live to see this accomplishment (of course, it was Suzy’s death that spurred the project, so it is an inherent Catch-22). Suzy loved to brag about Katie’s accomplishments; I can only imagine if she could have walked around her daily life bragging that her daughter had written a book about her… and a loving one at that.

Rosman has not been without critics as she went on this fact-finding mission in true reporter-style. One dinner party guest she talked with said, ” … you really have no way of knowing what, if anything, any of your discoveries signify.” True: I wondered as others have, where Suzy’s dearest friends were… but where is the mystery in that? To me, Rosman’s book is “significant” (in the words of the guest) because it shows how it is often those with whom we are only tangentially connected, those with whom we may have a unidimensional relationship (a golf caddy, an Ebay seller, a Pilates student) may be the ones we confide in the most. For example, while Katie was researching, she found that her mother had talked with relative strangers about her fear of dying, but rarely (if ever) had extended conversations about the topic with her own children.

It’s precisely the fact that some people find it easier to tell the stranger next to them on the airplane things that they conceal from their own family that makes Katie’s story so accessible. What do her discoveries signify? For me it was less about the details Katie learned about her mother. For me, the story of her mother’s death, the process of dying, the resilient spirit that refuses to give in, the ways in which our health care system and doctors think about and react to patients’ physical and emotional needs– all of these are significant. The things left unsaid as a woman dies of cancer, the people she leaves behind who mourn her loss, the way one person can affect the lives of others in a unique way…  these are things that are “significant.”

I woke up in the middle of the night thinking about the book. My head spun with all of the emotions it raised in me. I think that part of the reason writing has become so important to me is precisely because I do realize that we can die at any moment. And if you don’t have an author in the family who might undertake an enormous project as Katie did, where will that explanation of who you were — what you thought — come from?

Is my writing an extension of my desire to control things when cancer has taken away so much of this ability?

Is part of the reason I write an attempt to document my thoughts, my perspective for after I am gone… am I, in a smaller way, trying to do for myself what Katie did for her mother?

If I don’t do it, who will do it for me?

And in my odd way of thinking, am I trying to save anyone the considerable effort of having to work to figure out who I was– deep down?

My blog has the title “You’d Never Know”: I am telling you things about myself, my worldview, and my life, that you would otherwise have no knowledge of. One of the things people say to me all the time is, “You’d never know to look at you that you had cancer.” After hearing this comment repeatedly I realized that much of our lives are like that:

If we don’t tell someone — share our feelings and experiences — are our lives the proverbial trees falling (unheard) in the forest?

What if you die without being truly understood?

Would that be a life wasted?

If you don’t say things for yourself can you count on others to express them for you?

Further, can anyone really know anyone else in her entirety?

After a loved one dies, there always seems to be at least one mystery person: an individual contacts the family by email, phone, or in person to say, “I knew your loved one: this is how I knew her, this is what I remember about her, and this is what she meant to me.” I know that this happened when Barbara (my beloved mother-in-law) died suddenly last fall. There are stories to be told, memories to be shared. The living gain knowledge about their loved one. Most often, I think families find these insights comforting and informative.

Katie did the work: she’s made a tribute to her mother that will endure not only in its documentation of the person her mother was (and she was quite a character!) but also in sharing her with all of us. Even after her death, Suzy has the lovely ability to inspire, to entertain, to be present.

I could talk more about the book, Katie’s wonderful writing, and cancer, but I would rather you read it for yourself. I’m still processing it all, making sense of this disease and how it affects families, and being sad that Katie’s children didn’t get to know their grandmother. Katie did have the joy of telling her mother she was pregnant with her first child, but Suzy did not live long enough to see her grandson born. In a heartwarming gesture, Katie names her son Ariel, derived from Suzy’s Hebrew name Ariella Chaya.

I thank Katie for sharing her mother with me, with us. As a writer I learned a lot from reading this book. I’ve said many times recently that “we don’t need another memoir.” I was wrong. That’s like saying, “I don’t need to meet anyone new. I don’t need another friend.” Truth is, there are many special people. Katie and Suzy Rosman are two of them.

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Bye-bye Grandma

November 21st, 2010 § 3 comments

The moments catch me off-guard,
like my brother used to do
when we were kids.

He’d lay in wait
around the corner
in the hallway upstairs,
behind the jog in the corridor
outside my bedroom.

He would leap out,
scaring me,
terrifying me,
and I would scream
and shake
and cry.

That’s what these moments do:
they make me
scream
and shake
and cry.

Last night it was Paige,
with her round angelic face,
eyes pink with tears bursting,
coming into the kitchen while I was on the phone with my parents.

“I went to the computer…
to send some email to some friends…
and all of the emails from her are there…
there’s just a whole list of emails from her there…
it just says ‘Barbara Adams’ the whole way down…
and I just keep thinking how she’s never going to write me back…”

And so we cried.
Together.
And we talked.
Together.

Tonight
I was cleaning the kitchen,
packing up backpacks,
doing things I thought were “safe.”
I thought I would be protected from
emotional assault.

I opened Colin’s green homework folder and
put in his math assignment.
A sheet was already inside the folder,
a red squiggly crayon line decorating one edge.

I pulled out the paper with reckless abandon,
expecting an innocent scribble,
a wasted silly drawing.

But instead, it was a piece of writing paper.
On it, neatly printed in his finest handwriting,
it said, “Bye-Bye Grandma”
and there was a tombstone shape in the middle
that said “Barbara Adams 2009.”

There were green zig zags on the top and bottom,
red squiggles on the left and right,
bright colors all around.

I wasn’t ready for it.
I didn’t know it was there,
in the shadows,
waiting,
lurking,
coiled to take advantage when I dropped my guard,
waiting for me to be vulnerable.

And so I acted just like I did when I was a
child and my brother scared me.
I screamed.
I shook.
And I cried.

I vowed not to let my guard down like that
Again.

I love you, Paige.
I love you, Colin.
I love that you loved your Grandma so much.
I loved her too.
I miss her too.

And my hurt may dull a bit,
but it’s never going to go away,
because some of my hurt is for you.

It hurts not only that I don’t have Grandma in my life,
but also that you don’t.
And that’s what makes me cry the most,
because I know how much she loved you both,
and little Tristan too.

One day
we’ll have to explain to him just how special she was
and how much she loved him
and all of the the special things she did to show it.

Thinking about the fact that she’s not going to be here to
show him for herself just breaks my heart…

It makes me want to
scream,
and shake,
and cry.

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Everyone needs a trailbreaker

November 21st, 2010 § 1 comment

Never did we think we would share the bond of cancer. It’s certainly not something any mother wants to have in common with her child. And I know (now that I am a parent myself) that it must have been harder for her to hear MY declaration of cancer even more so than her own.

She was a trailbreaker for me. Like the sled that gets sent ahead to smooth and mark the trail of the Iditarod (I have dogsledding on the brain currently), my mother laid tracks for me. She was diagnosed a few years before I was, and I watched as she dealt with her illness. On her “off” weeks from chemo, when she felt well enough, she always came to visit. I think she needed to see some of her grandchildren and remember why she was going through the difficult treatments. She was Nana, she was Mom… she wasn’t a cancer patient.

I had never known anyone with cancer. I had never seen what happens to someone during chemo. And, to be fair, I only saw her after the worst was over. Just like I did, when the time came, she retreated to her bedroom during the worst days and kept it a private matter. But on those alternate weeks, I watched my mother’s head go bald. I watched her body go hairless. I watched her weaken, and suffer. I saw her remove her wig once the children had gone to bed and put on a green turban to finally give her head a break after a long day.

But I also saw something else in my mother. I saw the unfailing determination to be strong. I saw her desire to protect those around her. I saw her selfless devotion to family, and the importance of putting on a brave face. Most of all, I saw the smile. The gorgeous smile that lights up a room, always with bright red lipstick. My mother was extra beautiful to me in her display of courage, conviction, and unwavering persistence.

Neither of us knew that she was actually teaching me by example; within a year of her hair growing back in, mine would be coming out. We had no way of knowing we would soon start trading books, articles, and reports on advances in oncology.

I have learned many lessons from my mother. But for today, the one I am thinking about is one of the most valuable. You never know who’s watching you. You never know what’s around the corner. You never know when it’s going to be YOU… when it’s going to be your turn.

Trailbreakers are all around us. We just need to watch and pay attention. We need to learn lessons where we can. We need to have reserves we can tap into. Like a fallout shelter stocked for an emergency, we need to have people we can call on, experiences we can draw on to reassure us when crisis strikes. My mother did that for me. When it came to be my turn, I wasn’t ready; I wasn’t prepared. I wasn’t strong or brave or tough. But I did know I could get through it. After all, she did, and just knowing that fact helped me. I got tougher. I got braver. I got stronger. But having  watched someone close to me go though some of the same experiences meant a lot.

I don’t think of myself as a role model. But I also know the reality: some of my friends will eventually get cancer. And I hope that my experiences can help them get through it, and see that it can be done. One reason I have decided to be so open and public about my life is that I wish I had been able to connect to someone my age, and hear what she had to say. Cancer’s impact on me– the changes in my life, my body, my relationships with my spouse, children, and friends– cannot be underestimated. Two years after my initial diagnosis, I still have lots to work through.

“If you want to know what the road ahead is like, ask someone who is on her way back home.” I have been there, and feel it’s my duty to tell what I’ve seen.

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The Impetus of Fear

November 21st, 2010 § 5 comments

One of the most destructive emotions in my life is regret. Thankfully, I don’t have many decisions in my life that I would change if I had the chance. But there is one big medical one that I question daily: my decision to have my ovaries removed 18 months ago to put me into menopause and remove/significantly decrease some major hormones from being produced in my body.

In consultation with my oncologist, after chemotherapy was over I decided to take ovarian suppression injections. My period had come back within a few months of chemo ending even though I was in my late 30s. I was not going to have any more children. The tamoxifen I was taking had already started giving me ovarian cysts and I needed numerous ultrasounds to monitor them. Ovarian cancer was always in the back of my mind.

After one year of the injections (in which a thick needle is plunged under the skin of your belly and a small pellet of medication is placed which dissolves slowly over the course of one month) I decided I wasn’t going back; I couldn’t tolerate the questions every month with a menstrual cycle and hormone fluctuations. With my kind of breast cancer (estrogen and progesterone receptor positive), any remaning cancer cells in my body would be “fueled” by these hormones. I wanted to minimize them, and hopefully reduce my chance of cancer recurrence.

And so, after the year of injections I consulted with some surgeons. They felt that the ovary removal (oophorectomy) would be no harder on my body than the injections I’d already been taking. I had laparoscopic surgery in December of 2008 and felt good about the aggressive stance I was taking.

Then my world caved in. Within weeks of the surgery I was depressed. My hormones were bottoming out. Not just the estrogen and progesterone, but other ones the ovaries produce. I was plunged into menopause and all of its agony overnight. My hormone levels went not to the point of a menopausal woman (there are still some hormones present) but as my oncologist told me “of a prepubescent girl.”

I was depressed. I cried constantly. I was still getting over the surgery itself (not exactly the “walk in the park” that had been described to me) and had to miss the family Christmas vacation that year. Clarke and the 2 older kids went to Wyoming while I stayed with Tristan and tried to heal and regroup.

The joint pains started, the bone loss continued, the depression loomed. I had to watch my cholesterol numbers and must take osteoporosis medication after breaking ribs in a fall. I have sexual side effects that can’t be remedied with estrogen creams or pills. In the future I worry about the increased risks of dementia, heart disease and lung cancer without the protective benefits of estrogen.

But worse than any of them, the migraines began. I’d never had them before, but the overnight hormone drop brought them on fast and furious. Up to 15 a month.

It really is “always something.” Each decision is not isolated; everything I do to my body has ramifications and risks. I don’t know if I would have made the same decision if I knew what pain I was bringing on myself. All I know is that fear is a motivator. At the time all I could think about was the cancer. I felt that anything I could do to decrease the chance of my cancer recurring was worth it.

Some days I’m not so sure about that. I believe the doctors I consulted vastly underestimated the effect that this surgery can have. Perhaps as more women electively remove their ovaries if they test positive for the BRCA-1 and 2 genes we will learn more about the effect it has on our bodies (I have tested negative for both of those genes but it is a main reason women opt to have oophorectomies).

There’s no way to know if I made the right decision.

If my cancer stays in remission I will feel better about my decision. But as side effects mount and long-term health issues occur throughout my life because of this surgery and its repercussions, I can’t help but question if my fear may have pushed me too far.

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Fear of the Unknown

November 21st, 2010 § 0 comments

Sometimes I think this quality manifests itself in perceived negativity. Every so often, Clarke accuses me of focusing on the negative. I can’t say I think he’s wrong, I just think he’s wrong about what drives the concern.

It’s not that I focus on the negative. I just want to be prepared for whatever I am about to confront—good or bad. Of course, being prepared for bad things is harder. But I’m not even sure that I’m ready for good things to come my way.

Here it is in a nutshell: I have a terrible fear of being unprepared.

I never entered “suitcase parties.” These type of lotteries were popular in college. A business would purchase 2 round trip tickets and donate them to a sorority (or other organization) as part of a fund-raiser. You packed a suitcase and went to the drawing. If they chose your name, you and a guest would leave directly from the party to go to the airport.

The twist was, you had no idea where you would be going. You packed your suitcase and showed up without knowledge of whether you were headed to the Caribbean or Vermont. It could be anything, so you had to pack accordingly.

Sound fun? Not to me. Not appealing—at all. I never entered any of them.

I was always like this. But it really changed in December of 2006. The one time I wasn’t worried I got bitten on the ass. When I went back for my second mammogram I wasn’t concerned– in the least. There was no lump, I had just had a clear mammogram 18 months earlier, I was 37 years old, and I had had multiple benign lumps removed throughout my life. Every time I had needed a lump removed, I had worked myself into a tizzy of fear. And each time I had been proven wrong: the lumps were benign.

So to have vague density issues in one breast a few months after I stopped nursing my third child did not provoke worry in me at all.

So when they kept taking pictures I wasn’t worried. When they did the ultrasound I wasn’t worried. When the technician called in the radiologist to look at the ultrasound images I wasn’t worried. When they took me into a separate “discussion room” I still wasn’t worried.

But then the radiologist said words that scared me… hearing words I wasn’t prepared for was devastating.

It’s as if the words she said weren’t in my vocabulary. And therefore, when I heard what she was telling me… it’s probably cancer… I had no reflex in place to catch me while I fell. Here I was, unprepared in every way to digest the news.

So from then on I was fixated on preparing for what lay ahead. I didn’t want to be unprepared for the biopsy, for the double mastectomy, for the chemo. I walked through the world in a blur for that month while decisions were made. My body shut down and I was anxiety-laden. I knew I needed to get a plan. In getting a plan I would feel more powerful, more in control. And I did. Once my decisions were made about surgery and adjuvant therapy (chemo and long term hormone therapies), I think I became resigned. I needed to know what to expect. I needed to know what I might be able to do to take care of my family and how to carry on during what would likely be one of the toughest physical and emotional challenges of my life.

When my hair started to come out in clumps on the morning of my second round of chemo I went to the garage with my clippers and shaved my head. I needed to take control.

“What ifs” are my lifeblood. What if my cancer comes back? What if I die from this? What if I have such a poor quality of life that it’s not worth it anymore? What if I made a mistake being as aggressive as I have been?

The passage of time is helping me with these questions. I know you can’t control it all. And I don’t have the energy to worry all the time. But I also know that in being prepared I am self-soothing, rubbing my mental worry beads, trying to reassure myself that things will be okay.

I’m not sure I believe that yet. It’s a daily struggle. But I learned my lesson by dropping my guard. As a student of life, I failed once. I won’t do it again. Control what I can, be prepared for what I can’t. That’s as far as I am right now.

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Cancer is the answer

November 21st, 2010 § 4 comments

Many of my friends are going through it. You know, it. The anomie that occurs for stay-at-home parents when their children become more independent and they are left at home wondering where that part of themselves, independent of spouses and children, went. “What do I do next?” they ask themselves. “Where do I go from here?” Often in limbo, not having enough time to get a full-time job or needing the flexibility for school vacations and afterschool hours, stay-at-home parents struggle to re-enter society with their (often) outdated skills, wardrobes, and knowledge base (the words to Wiggles songs do not count as expert knowledge).

I’m being spared this aimlessness because of my cancer diagnosis three years ago. My youngest child is 4, he’ll start kindergarten next fall. He has some physical issues, abnormalities in his hands and neck which mean I’ll need to spend more time dealing with the school system about his special needs. He’ll need physical and occupational therapies for the foreseeable future, but he’ll be in regular school from 8:30 to 3:00 every day.

Now that I am in remission my weeks are still full with doctors, managing side effects, and helping others going through the diagnosis and treatment process. But more often than not I’m at the computer writing. I’ve carved out something that gives my life meaning apart from my family. And while my cancer history has involved all those who know and love me, I still think of it as mine. My cancer. Why? Because as much as someone with cancer can try to explain what it is, what it feels like– what the cancer experience is— I am not sure we ever can fully succeed. Like trying to explain the love you have for a child to someone about to have their own child, you just don’t get it until it happens to you.

And so, the cancer is mine. And that possession is providing my step to the next phase of my life. I don’t wonder what I’m going to do with my time… I just wonder if I will have enough time to write all I want to write– if I can express for some who cannot express for themselves what this cancer experience can be.

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Things don’t happen for a reason

November 8th, 2010 § 1 comment

One of the phrases I heard often during the emotional events of the past few years is “Things happen for a reason.” The other night while Clarke and I were watching a reality show one of the contestants spoke the same phrase as she predicted elimination from the show.

“I think everything happens for a reason,” she said.

“No they don’t!” I reflexively argued with the screen.

“Why does that make you so upset?” Clarke asked.

“Because it’s just a way that this woman is rationalizing why this bad thing– elimination from a contest she’s competing in– is okay. She’s trying to tell herself that things really aren’t as bad as they are. She’s trying to console herself that there is a purpose in her suffering… that it will lead to something bigger and better, and that is just not necessarily the case!” I said.

I don’t think things happen for a reason and I find it unsettling when people want to tell me that cancer, or my mother-in-law’s death, or anything that has been a challenge has happened as part of some grand plan for something better.

I just don’t believe it. And I don’t want you to believe it about my life, either.

I think things just happen — and when they do, you have to decide how you are going to handle them. Those actions, those responses, can teach you lessons, but they are lessons you teach yourself. You can grow, get stronger, do something that you otherwise never would have. Alternatively, you might learn that you made a mistake and should deal with a situation differently the next time it comes up.

My attitude?

Don’t give away the credit.

Don’t minimize the hurt or disappointment.

Don’t rationalize why it isn’t as a big a deal as it is.

There isn’t necessarily a purpose in suffering; it’s not part of a causal narrative that “passing the test” will get you to the next step. You make your own tests, you find your own lessons. But using the word reason implies that it was given to you, designed for you.

And I just don’t believe that.

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Living with uncertainty

October 27th, 2010 § 0 comments

My last post (“These things are not wrapped in a pink ribbon”) was special. It was the hardest for me to post, the most personal. I said things in it I hadn’t shared with anyone; I described my feelings in my typical honest way. Readers loved it and embraced my effort. My heart soared.

I never want people to feel sorry for me– I don’t feel sorry for myself. I feel lucky. I live a great life now; I’ve had a great life so far. I’ve learned a lot along the way and gotten stronger and stretched myself in ways I could not have predicted.

Sometimes I wake up in the middle of the night panicked. The other night my worries about Tristan came to the surface. This week I have been working to get him additional physical and occupational therapy sessions from our town in preparation for kindergarten next year (if you don’t know about Tristan’s physical problems you can read about them here).

At 1:47 I lay in the dark wondering, “Who will care for this boy if something happened to me? What if I die — can anyone be his advocate the way I am?” I pondered that question for some time. I thought of the family in a documentary I watched two weeks ago called Monica and David. The film’s subjects have Down’s Syndrome and recently got married. They live in Florida with Monica’s parents in a condominium. Monica’s parents should be retired by now, enjoying their golden years. Instead, they have a full-time job caring for their adult daughter and her husband.

When I was watching the film I kept thinking about the same issue: who would help Monica and David if something catastrophic happened to Monica’s parents?

I realized that her parents have somehow come to terms with uncertainty, as we all must.

In graduate school my Ph.D. proposal dealt with management consultants and their claims of expertise. How did this group of professionals carve out a niche in the business market and claim that only they were qualified to objectively advise companies on what they should do to not only survive, but thrive? The certification of knowledge intrigued me. I never finished my dissertation, but many themes of study from years ago have stayed with me.

I never could have predicted that I’d be thinking about uncertainty in terms of cancer. I never could have known that those advising me on decisions would be oncologists and surgeons.

But just as Monica’s parents have learned to deal with that uncertainty, so must I.

Betty Rollin wrote that having cancer means being a little bit afraid at least some of the time. I know that’s true. But learning to manage uncertainty is a part of everyone’s life.

I think of individuals with obsessive-compulsive disorder that I talked about in a blogpost on the shows Hoarders and Obsessed. The specific type of therapy used in Obsessed (cognitive behavioral therapy) has been a great mental tool for me. Psychologists force affected individuals to “sit with their anxiety” until it reduces by half. In a nutshell, repeated exposures to the panic-inducing event prove to the patient that (the world will not end, they will not die, their loved one will not be harmed) if they do not give in to their compulsions.

The lesson? The body cannot exist in a heightened state of anxiety indefinitely. To cope, to survive, the level must (and therefore will) come down.

I take that insight and the examples I’ve seen and incorporate them into my life. I know that at each stage of my diagnosis and treatment for cancer I panicked. When we found out Tristan had physical problems I was terrified at the possible outcomes for what his disabilities could be (most of them thankfully not realized). But that seems to be a comfortable pattern for me: get new information, freak out for 24 hours, wake up and get to work learning, dealing,living. Taking our fears, whatever they may be, and learning how to better work through them can only help us… for uncertainty is a given.

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Tristan, a story in 3 parts

October 15th, 2010 § 4 comments

Part one: Tristan’s Valentine

My son Tristan is about to turn 4. I haven’t written about him much here. I started thinking about why that is, given that his life has given us more twists and turns than either of our other children. I think it’s precisely because he’s had his share of hardships that I have felt overprotective of him. But it really needn’t be that way.

Tristan’s physical problems are a bit unusual. For those of you who don’t know him, he had open heart surgery at seven months old to move an artery that was compressing his trachea, preventing him from breathing properly since the time he was born. He required feeding therapy to learn to eat after having trouble combining eating and breathing until that point.

He also had problems with his neck. From birth his head sat at an awkward angle. Doctors thought it was muscular torticollis that could be fixed with physical therapy. We did a DOC band to correct the flattened head he had as a result of this “fixed” neck position. But after a while my intuition told me it wasn’t muscular. I felt it was orthopedic, something that would be an extremely rare abnormality. I took him to an orthopedic surgeon who confirmed our fear: Tristan’s problems were more serious than just a tightened muscle.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

We were told various diagnoses for his problems when he was about six months old– everything from cerebral palsy to Goldenhar Syndrome. But in the end, when pressed for a diagnosis they jokingly say he has “Tristan Adams Syndrome,” a combination of rare defects in his spine and hands.

The cervical vertebrae in his neck are not formed correctly. Half-formed, or fused together, the vertebrae near the base of his brain are mangled, appearing on x-rays, CT scans, and MRIs almost indistinguishable from one another. His adorable exterior hides a jigsaw puzzle-like appearance on the inside.

While the abnormal vertebrae caused him a severe head tilt to one side as an infant, it now appears from the outside as almost straight. As he’s grown his “z-curve” (two striking jogs in his neck which have thus far balanced eachother out; either one alone would have required surgical intervention already) has improved with growth.

We watch, we test, we monitor. If the congenital scoliosis (meaning a curvature of the spine since birth) worsens, he’ll need surgery to fuse his neck in a fixed state with rods and screws. His neck would not grow any more, and he’d have no mobility in it. Imagine having your neck in a position where it’s extremely short and you can’t turn it at all unless your whole upper body goes with it forever. So far, we’ve escaped this. But we are told that every growth spurt brings risk.

His other oddity are his hands. For the first year of his life we knew something was wrong, but no one could figure out what. He held his hands oddly. His thumbs just looked wrong– more like big toes. And finally, a hand surgeon was able to tell us: he has hypoplastic (underdeveloped) thumbs. He’s missing the muscle at the base of the thumb where the base of the thumb joins the wrist. I had never heard of that before. Likely, you haven’t either. That’s why no one could pick up on it. What does this mean? Functionally, it means his left thumb can’t bend at all. Try to pick something up holding your thumb out straight. Or hold a pencil, write your name. His right thumb bends slightly, but not “normally.” Oh, and yes, of course… he’s a lefty.

He doesn’t like to do things with his hands. He won’t write or draw. He can hold a spoon and fork, but prefers to eat with his hands.

Tristan’s surgeon says around now is a good time to do surgery to help get a bit more function in his left hand. By taking a tendon from another finger on his left hand and transplanting it to Tristan’s thumb, they hope to give him better mobility. It won’t allow him to bend his thumb. There isn’t a surgery that can do this: the muscle and tendon you use for this run all the way up to your elbow (who knew?!).

As I type this I know, looking at my thumbs while I type, that computers will be his saving grace. My thumbs stay straight when I type, and I am sure that he will learn quickly how to type and use a keyboard. He copies Paige and tries to play the piano. I think he might be able to do that too.

I remind myself about the documentaries I’ve seen over the years about people with different disabilities and how they’ve compensated. The YouTube video of the mom without arms who could change a diaper with her feet was one of the most amazing.

I know Tristan’s amazing spirit, his infectious giggle, his sweet and expressive face, his stubborn tenacity will get him through. I know he falls behind on every fine-motor skill evaluation. I know he won’t be able to play many sports well because of his hands or participate in lots of sports or fun activities because of the risk of neck injury.

When he brought home his valentines from school yesterday, his friend Bennett had written his name beautifully on the red paper. Tristan can’t write a letter. He knows them all, but he can’t write them.

My eyes teared up, jealous at the inscription.

I know he’s not going to do that anytime soon.
But I also know that somehow he will.

Someday he will.
And when he does,
that valentine with his name and mine
will go into my special box of keepsakes.

For always.

 

 

 

 

 

 

 

 

 

 

 

Shortly after that post, on his 4th birthday, Tristan had his tendon-transfer surgery.

…………………………………………………

Part two: It’s My Birthday and All I Got Was This Lousy Cast

My son Tristan had surgery yesterday. With no food starting at 8 PM the night before, and no drinking after 7 AM the morning of, Tristan was wheeled back to surgery at 3 in the afternoon. He asked only once for something to eat and drink. All day he played with Matchbox cars in his hospital bed waiting. Never a tear, never a complaint. A few times he gently asked, “Can we go home now?”

 

 

 

 

 

 

 

 

 

 

 

 

Surgery finished at 6 and was a success. Our fantastic and caring surgeon at Shriners Hospital, Dr. Scott Kozin, decided in the operating room after seeing the tendon in his ring finger that it wasn’t sufficient; he closed up that finger and used the middle finger instead. The tendon was transferred, the ligament stabilizing his thumb was tightened, the web space between his thumb and pointer deepened. All went well and a large cast was placed on his arm from fingers to shoulder.

Rather than a typical heavy fiberglass cast he received a more modern version of immobilization. To avoid having to “saw” the cast off in 3 weeks, this one will unwrap. For this reason, the pediatric patients are not as scared when the casts come off. These are not usable in every situation, but it was nice that he could benefit. Unfortunately, the worst part will be that there is a pin in his hand stabilizing his thumb right now. That will be pulled out when the cast comes off. I predict that removal is not going to go over too well.

When he woke up, Tristan’s first concerns were for water and his cars. Within an hour of awakening his personality re-emerged. As he started drinking and eating his spark returned. By 9:15 PM we were on the road, anxious to get him home. By midnight he was tucked in bed with a dose of pain meds and his stuffed animals.

The orange striped handmade pillowcase with dog pulltoys on it was a gift from the hospital as well as a cute quilted blanket with trucks on it. Every child gets a set of these handmade comforts.

 

 

 

 

 

 

 

 

 

 

 

 

A nurse found out it was his 4th birthday yesterday and rounded up some toys for him… cars and a book that makes fire engine sounds. He had a stash of toys to carry home from the hospital.

It wasn’t a great way to spend a birthday, but in the long run, it was a good sacrifice. There’s still some leftover cake for him to eat later today. The best present of all was having him come through surgery well and be able to come home with us without even having to spend the night. While there, we saw so many children with orthopedic injuries/issues that would keep them at Shriners for weeks or even months.

About 2 hours after the above picture was taken, Tristan looked like this:

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

That smile is the best present he could have given me.

……………………………………..

Part three: Have a Nice Day

Tristan recovered well from the surgery. I won’t show the picture of what his hand looked like when they removed the cast and there were black track marks of sutures all across his hand and wrist. The human body is amazing, healing itself after having so many things done to one tiny hand. Now, seven months later, all of the incisions in his hand are almost invisible, the only obvious one remaining is the long diagonal one on his left wrist where one end of the new tendon was attached. It’s still rather red but I know in time it will fade.

When the stitches came out Tristan needed extensive physical therapy to accomplish three tasks: stretch out the new web space, keep scar tissue from forming and tightening up the area, and get his brain used to communicating with the tendon in its new location.

A few months ago we encouraged him to hold a pen again, a paintbrush, any implement. If there’s one thing Tristan has always refused to do it’s written expression of any kind. The coordination and finger strength it takes to hold anything in his hand and make it do something deliberate is not an easy or enjoyable task for him.

About six weeks ago he started writing more. By “more” I mean completing a word without stopping. He had never colored a picture or fingerpainted. But through trial and error we patiently have worked with him to try a variety of options for writing. This week his therapist and I tried a dry-erase white board again. We’ve found that just because something doesn’t work once doesn’t mean it won’t work at a later date.

The combination of the marker making a smoother stroke (rather than the shaky, wavy lines he usually makes with pens, pencils, or crayons) and the smooth writing surface “clicked.”

The therapist was here at 6:45 a.m. on Tuesday morning for Tristan’s appointment. I took Colin to the bus and when I got back home and opened the door to the kitchen here is what I saw:

 

 

 

 

 

 

 

 

 

 

 

 

Now, to be fair, he did use his orange marker to trace the letters over the top of ones written in yellow by the therapist. It was a struggle, and took a lot of work. He still can’t write letters on his own without tracing. But it was a victory. It was a step. No mom could have been happier or prouder than I was. It might take him a little bit longer but he’ll get there.

And I will be there to hug him after every little step, the way I did when I saw this.

Tristan’s wish came true: I had a nice day.

In fact, I had a great day.

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Hoarders and Obsessed

August 27th, 2010 § 0 comments

My mother and I discuss psychology often. We’ve had a few conversations lately about the shows Hoarders and Obsessed (both appear on A&E, a second show Hoarders: Buried Alive airs on TLC). I used to like and watch both, but lately Hoarders has started to bore me. It seems like such a script in terms of the show; it’s like a Mad Libs where the only variables are name, sex, and age of the hoarder. The rest of the situations seems strikingly familiar each time.

The thing that frustrates us with the show Hoarders is that there’s no real therapy. There’s no discussion of treatment, no display of a change of thinking for the hoarder. Instead, over the course of 4-5 days (often it’s only 2 days) the hoarder is expected to suddenly “be ready to change” and start throwing things away with some prompting from a therapist and team of cleaners.

Why the therapists or family members seem surprised when initial enthusiasm wanes and the hoarders are reticent to part with their cherished belongings (often, literally, trash) is beyond me. Hoarding is a manifestation of a mental illness, and needs to be treated with counseling over a period of time. Like that of an addict, the pattern of behavior will not shift overnight, without education and a true desire to change.

Obsessed, on the other hand, shows the power of both a good therapist and a patient who is really ready to change. The process that they use takes about three months. With slow immersion into situations that are anxiety-provoking to the person with OCD, therapists use increasingly challenging situations to “untrain” the person. It may mean having an agoraphobic drive for a distance beyond his/her comfort zone or preventing a person with washing compulsions to wash his hands after doing a task that gets him dirty. Slowly building up to more traumatic and anxiety-provoking situations allows the patient to feel a sense of accomplishment and pride at making progress toward undoing these compulsions. At the end, the patient performs the task that they stated was their “dream goal” to achieve. This goal might be getting on an airplane to visit a relative or risking a dirty, germy home by inviting guests over for a party.

For me, a key takeaway from the show is that the body cannot stay in a period of highest anxiety for a long period of time. Even during all-out panic attacks that patients may have, if they can ride it out, focus on breathing and realize that they are okay, eventually their anxiety level will diminish. It may take minutes or hours, but eventually patients report that their self-rated anxiety levels revert to tolerable amounts. Individuals will see that they confronted their fear and remained safe. Therapists use cognitive behavioral therapy as their guide to teach patients that their particular fears are unfounded (if you don’t flip the light switch a certain number of times, no harm actually does come to your loved one, for example).

My point with this discussion is to say that not all OCD reality shows are the same. It’s unrealistic to expect a condition that’s been in place for years, perhaps decades, to be undone in a few days while cameras are watching. There’s a reason so many people relapse after going to rehab — it’s hard work. To me, showing the arc of recovery with cognitive behavioral therapy is a more realistic and appealing process, and ultimately a more beneficial one to the patient.

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The Woman in the Ivory Knit Cap

February 19th, 2010 § 0 comments

I took my friend Brenda out to lunch for her birthday today. While we were sharing an appetizer, a group of four people entered the restaurant: three men dressed in business attire accompanied a woman with a knit cap on. I realized in an instant she was bald underneath that covering and postulated that the hat would not be coming off.

They took off their coats and sat down at the table. I watched them for a while, from a distance, across the restaurant. The hat did not come off. She was bald, most certainly, and likely undergoing chemotherapy. My mind started to wander, and I started to wonder. Was she at a business lunch and able to keep working during this crisis? Was she done with treatment and waiting for her hair to grow back in or was she on an “off week” of chemo when food might be somewhat appealing?

I kept looking at her hat. It was freezing cold out today, so it wasn’t particularly out of place. But I kept staring at it. It looked handknit. Had someone she knew made it for her? Had she gotten it from the basket at the cancer center where people knit and donate hats for cancer patients?

I wonder what she’ll do with the hat when her hair grows back in: will she throw it away? Burn it? Give it to someone else who needs it? After wearing those head coverings day after day, you don’t want to lay eyes on them again. After my hair grew back, I saved my scarves for a friend’s sister who was set to start chemo shortly after I finished. I recently saw pictures of her wearing them. It’s odd to see them, associated with so many memories for me, on her head too. Now I have the scarves back, and some have already been lent to another member of the club.

My wig, worn twice, is packed away in the basement. I will soon donate it to a charity that provides wigs to women who can’t afford them. I hate that wig. I hate what it looks like. I hate how it feels. I hate how I looked in it. Twice I wore it, and I had to keep from tearing it off every second it was on my head. It wasn’t me; I felt like someone else in it. But I just can’t get rid of it yet. It’s like a trophy for walking through the fire.

I wonder if that woman I saw at lunch today feels like that. She and her group finished their meals and left before I did. I was really sorry I didn’t get to tell her that her hat looked great on her.

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

January 14th, 2010 § 2 comments

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.1

  1. October 20, 2010 [↩]

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Eight

January 3rd, 2010 § 0 comments

It’s my first post of the new year. And I love when I get to write about happy things. Today my son Colin turns 8. All of the usual things go along with that: cake, presents, hugs, reminiscing. As I looked 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. His crewcut begs to be rubbed Buddha-style. He’s a big kid, dwarfing most in his grade. I hope 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 8th birthday, Colin. I love you and am so proud of who you are. I can’t wait to see what you are going to do with your charming self when you grow up. You made quite an entrance into this world. I hope you similarly make the world take notice as you grow.

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Eleven

October 28th, 2009 § 2 comments

I remember it so well.

I hope I never forget.

Those feelings I had eleven years ago as I had my first contractions and went into labor with my first child, Paige.

My husband and I were living in New York City.

I was taking a long walk home after an appointment when I

first felt the tightening begin.

It was three o’clock in the afternoon of October 27th.

By dinnertime I was at the hospital.

By evening I was home again.

Too soon, they told me.

Could be hours,

could be a day or two.

By midnight I was back at the hospital again,

This time for good.

All night we waited.

All night I labored.

And at 8:06 a.m. she arrived.

My daughter.

I left the hospital two days later in typical New York fashion:

not with a car seat,

but instead with sweet P bundled in a carriage.

We walked home the 4 blocks to our one bedroom apartment.

Two days later we emerged to show her the NYC marathon.

As every parent does,

I fell in love.

As Clarke worked 80+ hour weeks,

She and I were buddies,

my city baby and I.

For hours we would explore the city.

Everywhere I went, so too did she.

When she was one year old I had medical problems;

an autoimmune disease which attacked my skin,

pigmenting it bright red,

thickening the soles of my feet

and palms of my hands

until I could hardly use them.

Hours were spent in the waiting rooms of doctors

before I was correctly diagnosed.

The treatments were time-consuming.

Paige came to every appointment with me.

It never occurred to me to get a babysitter.

She just came along.

As she grew I just knew she was something special.

She was always perceptive.

Verbal.

Bright.

At sixteen months she sang the alphabet.

By eighteen months we were having conversations.

Once we started we never stopped.

Paige “gets it.” She’s an old soul.

She is so mature it is sometimes hard to remember her real age.

I am so lucky.

I am so lucky she’s mine.

And I tell her so all the time.

I don’t know what she’s going to do when she grows up.

But I know what she’s going to be –

All the things she already is:

smart

sensitive

loving

confident

grounded

brave

funny

creative

talented

focused &

lovely.

Paige has seen a lot in her few years.

More than I would have liked for her.

I wish I could have spared her some of the

difficult things we’ve gone through.

My medical diagnoses, especially cancer, and Tristan’s issues too.

There’s the box under Paige’s bed (“the box” 9.17.2009) –

The one Barbara gave her in anticipation of her birthday.

She knows what it is now.

It won’t be a surprise.

I know what she really wants for her birthday: she wants to have Grandma back. Alive.

Me too.

When Paige was 5

I got a call from the ski school in Jackson Hole.

“Paige is done skiing for the day,” they said cryptically,

“You should come get her.”

They wouldn’t give me details.

She’d fallen.

But they wouldn’t tell me anything.

Clarke was on the mountain skiing.

He was able to reach her first.

It was one of those times I marveled at how we existed before cell phones.

I made it to the medical clinic at the base of the mountain.

I walked through the swinging double doors.

I’ll never forget seeing Clarke and a doctor staring at x-rays

up on a lighted board.

It happened in slow motion…

I mouthed “Broken?”

and Clarke nodded.

My five year old had just broken her leg.

It was the first time I’d ridden in an ambulance.

I didn’t know the next time it would be my turn.

It was the first time there was a fracture.

I didn’t know the next time it would be my turn.

It all seemed so dramatic at the time.

Maybe being far away from home made it worse.

I had no idea I’d look back on that episode and think it was

literally “child’s play.”

After we finally got to the hospital and talked to an orthopedic

surgeon it was time to set the leg.

They’d given Paige pain medication and something to make her drowsy while they put the cast on.

Clarke and I were a few feet from the foot of her bed

talking about the logistics of getting her home on the airplane.

As she slipped off into a hazy slumber I saw her arm go up

into the air.

She slowly raised it, then her hand.

And then she made the sign language symbol for “I love you”:

Thumb, pointer, and pinkie extended out, middle and ring fingers

tucked back.

It was our signal.

I’d taught it to her as a toddler.

I wanted a way to tell her I loved her if I couldn’t be heard.

Across a crowded room, in a place that was quiet, or when she was nervous at a school performance,

I’d make the gesture for “I love you” and

she would know I was right there for her.

And so,

as she drifted off,

my five year old

told me she loved me,

that everything was going to be okay,

that this was all just a bump in the road,

all without saying a word.

Sweet P,

there are so many things I hope I’ve given you:

skills, characteristics and traits to

help you find your way in this world.

I hope I will have many more years to watch you grow

and see what you will do in the years ahead.

You make me proud,

you make me smile,

you make me laugh,

you make me cry.

Now, forever and always,

I believe in you.

May you someday know the joy that I have known having you as my daughter

and the special bond we will always share.

The love that Nana and I have,

now next to you and I…

I hope that you will have that gift

someday with a daughter too.

Happy birthday.


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Obituary for Barbara Smith Adams

September 25th, 2009 § 1 comment

Obituary for Barbara Smith Adams

August 6, 1945 – September 16, 2009

Barbara Smith Adams, of Scottsdale, AZ and Jackson Hole, WY, died on September 16, 2009 in Kemmerer, Wyoming from injuries sustained in a car accident. She was 64 years old.

Barbara was raised with her siblings Daniel (deceased), Connie, Kathy, Ginny, David, and Bill in Lorain, Ohio. She was born on August 6, 1945 to Daniel and Helen Smith. She attended Denison University where she met and later married her husband of 41 years, Clarke Adams, who survives her.

Barbara was the heart and soul of a large family. She dedicated her life to raising her six children: Helen (Paul) Casseday, Clarke (Lisa), Sarah (Julian Lewis), Christopher (Abigail), David (Jessica), and Taylor.

Barbara doted on her grandchildren, recently adding a ninth grandchild two days before her death. She will be missed by them all: Jackson and Owen Adams (New York, NY), Benjamin and Ellianna Lewis (Phoenix, OR), Ryan and Emily Casseday (Anthem, AZ) and Paige, Colin and Tristan Adams (Darien, CT).

Barbara nurtured her children and grandchildren and her commitment to raise them with integrity and self-confidence has provided them with a foundation to weather this tragic loss. She loved to plan family get-togethers, especially the traditional family reunion in Jackson Hole each Christmas.

She leaves behind a loving and sorely bereft circle of family and friends. Her presence, love, and guidance will be missed by all who knew her.

There will be a memorial service to celebrate her life on October 9th at one o’clock at Brophy Chapel in Phoenix, AZ.

In lieu of flowers, donations can be made to Shriners Hospital for Children, Philadelphia, PA http://www.shrinershq.org/Hospitals/Philadelphia/ or the Alzheimer’s Association http://www.alz.org/index.asp

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Playing it safe

September 21st, 2009 § 0 comments

Written September 21, 2009

The light turned yellow
And in that split second
When my foot came off the pedal
I had to choose its destination–
Back to speed or
To the brake.

Right or left.

Go or stop.

A moment in time.

Hesitate or act.

And in that fraction of a second
I thought of her–
Barbara.
Her life gone
In a crash
In a fraction of a second.

I played it safe.

Under the amber light
I stopped.

Safe
and
sound.

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I think so too

April 27th, 2009 § 2 comments

That chair you’re sitting in?

I’ve sat in it too.

In waiting rooms. Chemo rooms. Prep rooms. For tests. Surgeries. Procedures. Inpatient. Outpatient. Emergency visits. Routine visits. Urgent visits. To see generalists. Specialists. Surgeons. Alone. With friends. With family members. As a new patient. Established patient. Good news. Bad news. I’ve left with new scars. Prescriptions. Appointments. Words of wisdom. Theories. Guesses. Opinions. Statistics. Charts. Plans. Tests. Words of assurance. More bloodwork. Nothing new. Nothing gained. Nothing but a bill.

That feeling you’re having?

I’ve had it too.

Shock. Disbelief. Denial. Grief. Anger. Frustration. Numbness. Sadness. Resignation. Confusion. Consternation. Curiosity. Determination. Dread. Anxiety. Guilt. Regret. Loss. Pain. Emptiness. Embarrassment. Shame. Loneliness.

That day you’re dreading?

I’ve dreaded it too.

The first time you speak the words, “I have cancer.” The first time you hear “Mommy has cancer.” The day you wear a pink shirt instead of a white shirt. Anniversary day. Chemo day. Surgery day. Scan day. Decision day. Baldness day. The day the options run out.

Those reactions you’re getting?

I’ve had them too.

Stares. Questions. Pity. Blank looks. Insensitivity. Jaw-dropping comments.

Those side effects you dread?

I’ve dreaded them too.

Nausea. Vomiting. Pain. Broken bones. Weakened heart. Baldness. Hair loss. Everywhere. Unrelenting runny nose. Fatigue. Depression. Hot flashes. Insomnia. Night sweats. Migraines. Loss of appetite. Loss of libido. Loss of breasts. Phantom pain. Infection. Fluid accumulation. Bone pain. Neuropathy. Numbness. Joint pain. Taste changes. Weight gain. Weight loss. Some of them happen. Some don’t. Eventually, though? You name it. It changes. Temporarily anyway.

That embarrassment you’re feeling?

I’ve felt it too.

Buying a swimsuit. Getting a tight-fitting shirt stuck on my body in the dressing room. Having a child say “You don’t have any eyebrows, do you?” Wearing a scarf. Day after day. Wondering about wearing a wig because it’s windy outside and it might not stay on.

That fear you’re suppressing?

I’ve squelched it too.

Will this kill me? How bad is chemo going to be? How am I going to manage 3 kids and  get through it? Will my cancer come back and take me away from my life? Will it make the quality of life I have left so bad I won’t want to be here anymore? Is this pain in my back a recurrence? Do I need to call a doctor? If it comes back would I do any more chemo or is this as much fight as I’ve got in me? What is worse: the disease or the treatment?

That day you’re yearning for?

I’ve celebrated it too.

“Your counts are good” day. “Your x-ray is clear” day. “Now you can go longer between appointments” day. “See you in a year”day. First-sign-of-hair day. First-day-without-covering-your-head day. First taste of food day. First Monday chemo-isn’t-in-the-calendar day. Expanders-out, implants-in day. First walk-without-being-tired day. First game-of-catch-with-the-kids day. First day out for lunch with friends day. First haircut day. “Hey, I went a whole day without thinking about cancer” day. “Someone asked me how I’m doing, I said ‘fine’ and I meant it” day.

That hope you have?

I have it too:

A cure.

Don’t you think that would be amazing?

I think so too.

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