Jody Schoger and Gratitude

Posted on: May 20th, 2016 by
14

IMG_1440

This has been a sorrowful week in the world. We lost so many to metastatic breast cancer (MBC), including Jody Schoger. Even though I knew she was in hospice, I was still stunned when I received the news that she passed away. And in that finding-out moment, I knew the world was suddenly worse off for not having Jody’s fierce passion, intelligence, kindness, and advocacy in it.

I never met Jody in person, but like so many in our wonderful online community, I felt as if I knew her. One of the #BCSM tweetchat co-founders and a moderator of the tweetchat, she exuded kindness and caring for all participants. A few years ago, I had a medical scare. I was seeing my oncologist, who confirmed I didn’t have a breast cancer recurrence, as the menacing bone scan report indicated. When I checked in during our #BCSM tweetchat, the first thing Jody did was ask me how the oncology appointment went.

I embraced that act of kindness deep within my heart and will always treasure it.

Frankly, writing this post is so difficult, as words cannot capture the anguish and ache I’m feeling right now. I know I’m not alone in this raw mourning — so much of the world is grieving with me for loved ones lost to MBC. I cannot capture the depth of sorrow and how I feel kick-punched by pain. So I don’t talk about this to friends. That’s how stopped up my voice feels.

Is it possible to love someone you never met?

Yes.

I’m having a difficult time coping — and breathing — at this very moment.

So right now, as I write this post, I’m about to spiral down into the bottomless abyss of despair.

To keep from doing that — after all, depression is not helpful for me — I am reflecting on what I’m grateful for. I must turn to appreciate what I daily take for granted. No, this is not a post on thinking positively or to bury our heads in the sands of denial. Instead, writing what I’m grateful for will keep me (and maybe others) from completely sinking into the quicksand of anguish.

Here are just a few things I’m grateful for:

The blooming bush in my front yard that I’m sometimes too busy to notice. It has glorious white flowers right now.
Flowers
The longer days of spring and summer.

The fact that my daughter challenges me on everything these days. It means she’s growing up and is learning about boundaries.

The purring of my cats.

The ability to write and create art.

The ability to go to the bathroom independently, something not everyone has.

Being able to teach and touch students’ lives.

Music.

Books.

Great doctors, although they scare the shit out of me.

The online breast cancer community.

More cowbell, always more cowbell.

What are you grateful for? Can you add to this list?

Do you have any fond memories of Jody Schoger? Feel free to share them.


Cancer Was Not a Gift & It Didn’t Make Me a Better Person: A Review

Posted on: May 13th, 2016 by
7

Nancy Memoir

Truth.

That’s what you will find in Nancy Stordahl’s memoir Cancer Was Not a Gift & It Didn’t Make Me a Better Person: A Memoir About Cancer as I Know It. The book’s title is telling: Stordahl exposes the ugliness that breast cancer really is. In a culture of pinkwashing and stories about how breast cancer changed people for the better, it is refreshing to read this book’s account of breast cancer.

Stordahl knows first-hand about breast cancer, unfortunately. Her mother died of metastatic breast cancer, and not too long after her mother’s death, Stordahl herself was diagnosed with breast cancer. I don’t want to divulge too much about this important book, but Stordahl interweaves her breast cancer story with her mother’s breast cancer story exceedingly well. She also covers the complexity of how breast cancer has affected her family, as well as how horrific this disease really is.

The memoir’s narrative prose is so extraordinary, that I could not stop reading this book. The memoir is not the typical breast cancer feel-good-book; instead it is a poignant account of the tragedy that is breast cancer.

If you are a fan of her popular, excellent blog Nancy’s Point — as I am — you will appreciate the memoir’s same candor and heart as Stordahl’s blog. A well-known advocate for those with metastatic breast cancer, she has no qualms about sharing any topic on breast cancer.

Stordahl is a refreshing agent for change in breast cancer culture.

Similarly, her memoir is the antidote to the pink ribbon culture so pervasive in our society.

I highly recommend this memoir. It can be purchased here.

Have you read Nancy Stordahl’s memoir yet? Feel free to leave your comments.


Dancing Alone on Mother’s Day

Posted on: May 7th, 2016 by
2

For many in the US, Mother’s Day is a time of celebration. People may reflect on how lucky their lives are to have wonderful mothers and/or children. For others, this holiday is quite somber: too many people have lost their mothers or are even estranged from them.

This holiday’s cup runneth over with emotion.

Last Mother’s Day was fun for me and filled with celebration. However, this year, Mother’s Day is bittersweet. Arielle and I will do fun things, but I cannot rest easy.

My mom is grieving, spending the holiday without her husband at home for the first time since they became parents.

***

As you know, my dad has dementia and Parkinson’s and is at a facility that specializes in dementia.

Rewind to before I was born: My parents were a pair of great ballroom dancers. They won numerous awards, but, most importantly, they loved to dance. Even as I was growing up, once a week, they asked one of my grandmothers to babysit — and then they hit the town by ballroom dancing.

They danced at least once a week, and my brother and I knew, as we grew up, that dancing was their love. It’s no wonder, then, that they supported my tap dancing lessons for quite a number of years. At my wedding reception, my dad led guests in dancing the hora. In fact, my parents loved all kinds of dancing, although their favorite was always ballroom dancing.

When they retired and moved to Florida, they found a ballroom dancing community and went dancing two to three times a week. Even during my dad’s dementia, the one thing he could still do was dance. Even as his memory was failing, his muscle memory was still strong.

They danced and danced. Until the day he fell out of bed and broke his hip. Now my broken-hearted mom visits the nursing facility to see the man who was her dance partner for life.

Now she is alone.

It is unbearable for me to witness her grief. I try to help her through it. And I and my brother are grieving, too. We’re losing a father, slowly. And we’re understandably upset that my mom is grieving the decline and eventual loss of her husband.

And I’m saddened that my mom no longer has her life partner, as the dementia has fully taken over. And now, with his inability to walk, she no longer has her dancing partner.

“Your dancing days are over,” says my mom’s mean-spirited friend.

My mom calls me and cries over this comment. I keep trying to talk her out of this dysfunctional friendship, but my mom continues to reach out to a woman who does not have her best interest at heart.

And yet, despite all the trauma that my mom is going through, she was kind enough to send me flowers for Mother’s Day.

Speaking of flowers, my mom is a great gardener. My dad was never into gardening, so this has always been a solo hobby. She takes great pride and joy in her garden, which yields unbelievable flowers, so I encourage her to throw herself into gardening. It’s great therapy, as my mom won’t go to support groups.

So Arielle and I will celebrate Mother’s Day, as always. She will have fun, and I will enjoy the moments we have together. But I will call my mom and think regularly about my parents. They live a long way from me, but the distance between our hearts is short.

Flowers

Have you experienced the loss of a parent? If so, how do you handle Mother’s Day and/or Father’s day?

What are your Mother’s Day plans? Feel free to share a memorable Mother’s Day.


Book Launches a Heart-to-Heart Talk

Posted on: April 22nd, 2016 by
12

Calling the Shots in Your Medical Care is about to launch in just a couple of months. And, with the excitement building, I feel a sense of purpose and urgency and certainty that this is the right time for the book to make its debut.

But I haven’t been so sure this is the right time to tell Arielle that mommy had breast cancer.

As many of you know, some time ago, my daughter accidentally found my prosthesis, as it flopped out of my bra. We had an age-appropriate talk, and I was hoping that would be that for a while.

Well a while has come and gone. She’s almost eight years old now, and the doctor-fixing-boo-boo language no longer flies.

A close friend tells me, “You’re going to have to tell her, you know, especially with your book coming out. Do you want her to find out by reading about it in your book? Don’t let her find out this way. It should be you who tells her.”

“Not yet,” I say. “She can’t read that well yet. And she’s not ready.” (Read: I’m not ready.)

“When will she be ready?”

“Maybe when she’s a teenager?”

***

Every once in awhile, I catch my daughter eyeing my scars and human-created nipples in a more sophisticated way than before. She gently traces the scars with her fingers. Because I don’t want Arielle to have body-image issues, I act like I’m just fine with my body and that my breasts are the most natural things in the world.

Except they are not.

***

Arielle is happy about the upcoming book launch. She is so thrilled the picture on the book’s back cover will be of both of us. She expects to attend the launch party, and at least one reading and book signing.

“I want to be there [at the launch party] for you, mommy,” says my sweet child, “just as you’re always here for me.”

At this time, I’m looking for a venue to host the book launch party. The prospect of the party makes Arielle especially happy. She can’t wait to be involved. And that’s the problem – she wants to be involved.

She’s more involved than she knows.

***

Kids are smart. They know there’s more to a story, even if you tell them only a portion of that story. On her own, Ari has figured out that something more significant, more serious had happened to her mom. We just don’t talk about it. And that’s been fine with me.

We are open about her adoption story.

We are not open about my cancer story.

Ari is a sensitive, caring child and, being adopted, she has already lost a biological mother. I don’t want to alarm her that she might lose me, too.

I know I have to spill the beans before the book launch. She will hear too much there. And it would break my heart to leave her home with a babysitter on such a significant day. I don’t know what to do.

***

One day when I’m not paying attention, Ari looks through the completed manuscript I accidentally left on my desk.

She accurately reads “Can-cer” out loud.

***

“Honey, do you know what cancer is?”

She shrugs.

“It’s a disease that makes someone very sick. [Deep breath] Years ago, before you were born, I had breast cancer, and I was very sick. But my doctor gave me a medicine called chemotherapy to get rid of the cancer.”

“How did they give you chemo…therapy?”

“Through a needle. In this arm.”

“A doctor took my breasts off and used my belly fat to create new breasts. That is why I have such a big scar under my stomach. Baby, I’m OK now.”

“I’m not a baby, mom.”

***

A few days later, we are talking about why mommy wrote the book. Ari is pensive: “Like the time you had breast cancer, you needed help,” she says. ”And now your book will help other people.”

Wise beyond her years.

We hug.

***

And now that the book launch is right around the corner, I feel better that Ari and I had this conversation. I am honest in my book, so I must be honest with my own daughter.

We must be open about her adoption story.

We must be open about my cancer story.

Still, I cannot rest easy.

What happens when she discovers that breast cancer kills?

What happens when she discovers how scared I was and still am?

What happens when she learns the truth that a doctor didn’t actually fix me?

Will she hold these gentle lies against me? After all, isn’t withholding information a lie?

As she discovers more about breast cancer, we will walk on unknown terrain. But at least the road we are heading on will be paved in truth.

Arielle on Path

How did you tell your children you had cancer?

Have you kept your cancer a secret from your children or anyone else? Why or why not?

Do you have any advice for me, as I know I will have to give her more details in the future?


Something Exciting

Posted on: April 15th, 2016 by
10

I’m pleased to announce that my book, Calling the Shots in Your Medical Care, will be launching in July 2016. This book focuses on helping others realize they have a voice in their own medical care. While I use my own breast cancer experiences as examples, this primer is geared toward anyone facing any kind of medical crisis.

However, a couple of disclaimers:

• The book is not a substitute for seeking out medical expertise.

• The book does not promise that if one advocates for his/her own healthcare needs, that he/she can change medical outcomes.

However, what Calling the Shots in Your Medical Care does is to encourage patients to be proactive in their own healthcare.

Too many patients are meek and passive, viewing doctors as uncontested authorities. Patients don’t always know how much power they really do have. Until they speak up, that is.

Calling the Shots helps readers:

 assert their needs to and command respect from medical personnel, such as doctors, nurses, and medical assistants.
 know how to find the right physicians.
 find out how to hire and fire doctors.
 effectively talk to physicians.
 deal with difficult doctors, such as Dr. Bully MD.
 build a great medical team.
 deal with difficult administrators and the bureaucracy of records departments.

Calling the Shots is a call to action.

Why launch in July?

I got the idea to launch during this month from the US Independence Day holiday. After all, the book is a declaration of independence of a sort – patients can be civilly disobedient to medical systems and personnel who do not have the patients’ best interest at heart.

I will keep you posted as the book launch gets closer. In the meantime, I’m working hard and am embracing the fact that exciting and unexpected things are bound to happen.

This is an exciting time.

I’m ready.


So Far Away

Posted on: April 8th, 2016 by
16

At the rehab center, I am shocked by the stranger in my father’s room.

It is my father.

***

My dad’s dementia has progressed so rapidly, so markedly that he is now a stranger to my family. He still knows who we are, but it’s like his very essence – that spark that makes him who he really has been throughout his life – is gone.

Oh, he’s technically still my dad and my mom’s husband. But for several years now, my mom was alone before she was physically alone.

At least they still went ballroom dancing twice a week; they were always good at dancing together. Until his hip broke in December.

Now my mom must learn to dance alone.

“How do you make a meal for one?” she asks me.

She has never before lived alone. She lived with her parents until she married young. Now that he was recently transferred to a permanent place for dementia and Alzheimer’s patients, they are apart.

“You can freeze food in one-person portions,” I say.

She is lost and cries to me on the phone. I wish I could just fly to Florida whenever she needs me. But she’s so far away. So I become a vessel for her pain.

I don’t cry with her. I don’t know why because I do cry alone. Perhaps I feel I must not fall apart when she’s falling apart.

Oddly, even though I’ve never been in my mom’s situation, I sort of understand. I know what it’s like to have my husband transform into a stranger. I’ve experienced the death of a relationship – albeit under different circumstances – and intensely grieved this death. I also had to learn to be alone.

My dad’s been on medication for dementia and for his Parkinson’s disease, but neither medication gives a rat’s ass that it has done nothing for these conditions. Neither do the doctors. He’s just one more old, frail, demented Florida patient to them. They don’t return my calls even though my mom has given them written consent to talk with me.

My mom is easily confused by medical jargon (who wouldn’t be?) and she has difficulty understanding and communicating what medical personnel tell her. So I’m her proxy, making these phone calls. I don’t mind making them.

But this is what I do mind:

The hospital social worker who deliberately doesn’t return my calls. I call her at least three times during the time my mom is in the same hospital visiting my father a few days after his third hip surgery. I call my mom and tell her to go to this social worker’s office, which she does. The social worker is in her office, admitting to my mom that she received my calls but isn’t calling me back. And don’t get me started about the rehab social worker who won’t return my calls until I call her boss and make a stink over this stinky situation.

I could go on and on about the rude, crude way my parents have been treated by the medical and social work “professionals” during a most stressful period of my parents’ lives, but I won’t.

Mini-rant over.

My dad has so many things wrong with him, the odds of his long-term survival, I think, are low.

While I sit next to him at the rehab center where he is recovering from his physical injury, he is so far away.

There he is, all hunched over in his wheelchair, staring down into space and unable or unwilling to lift his head when my grieving mom, says, “Beth is here to see you. You know Beth?”

“Yes, she’s my daughter,” says my dad blankly, with slurred speech.

“Hi dad,” I say, feigning calm.

No answer.

Then in a few minutes, he starts talking gibberish to my mom, who tells him to lift up his head and look at me. After her constant cajoling, he looks up at her and forces a smile, which disappears as quickly as it came. Then his head drops down again, where it remains for the rest of our visit.

I am losing my father. My dad is already gone.

Gone. Gone. Gone.

And my dad’s condition is only going to get worse.

Until he’s gone.

And so, as I write this during yet another sleepless night, I still know that cancer is shitty. But I’ve come to realize that dementia is right up there on the list of top shitty diseases. Dementia steals people from us, as we helplessly watch them wither away mentally, spiritually, and physically.

And I can’t help but wonder whether I will share my father’s fate. I no longer worry only about cancer. I don’t want to become smothered by dementia, and I certainly don’t want to be a burden to my daughter.

My dad and his only granddaughter

My dad and his only granddaughter

At this point, in my sleep-deprived brain, the song “So far Away” by Carole King runs rampant:

“So far away
Doesn’t anybody stay in one place anymore
It would be so fine to see your face at my door
Doesn’t help to know you’re just time away
Long ago I reached for you and there you stood
Holding you again could only do me good
Oh, how I wish I could
But you’re so far away…”

Have you known/Do you know someone with some sort of dementia?

Have you ever lost someone to this condition?

Do you have any advice on how my family and I could best cope through this?

My dad and mom

My dad and mom


Fine Black Lines

Posted on: April 1st, 2016 by
4

fine black lines

What better way to celebrate National Poetry Month than to celebrate a book of poetry on breast cancer. The book is not new, but its message continues to be timeless and universal.

Fine Black Lines: Reflections on Facing Cancer, Fear and Loneliness by breast cancer survivor Lois Tschetter Hjelmstad is an phenomenal collection of poetry for those who have been diagnosed with breast cancer and their loved ones.

Besides being beautifully written, the poems and prose in this collection speak directly to the heart. These honest works are profound, yet simple — but never simplistic. As someone who was diagnosed with breast cancer, I easily relate to each piece of work in this book. In fact, among all the books I have at home, this one is among my favorites and sits in the bookshelf near my bed.

It’s rare that I find a book of poetry without a having a favorite poem or poems, but in this collection, all the poems are my favorites. They each touch me in different ways, and the sum of the total pieces of work equals sheer brilliance.

Here are two samples from the book:

The Mall

I went shopping today
for a bra that would not bind
for prostheses to remind.

It is difficult to search for something
that you never really wanted
in the first place.

You Will Be Just Fine

Please do not trivialize
My suffering.

You who are healthy
You whose mortality is as yet
Only dimly perceived —
Please do not say
“You will be just fine.”

I may well be — someday —
But I do not know…
You do not know…

On a personal note, I was lucky to meet Hjelmstad and her supportive husband Les when I was a newly diagnosed and frightened cancer patient. She helped me immeasurably and on April 4, 2001, signed her book for me as follows: “…with much love and best wishes for courage, comfort — and joy.”

And over the years, I have derived much courage, comfort, and joy from this book. If you haven’t yet purchased a copy, please do so here. You will be glad you did.


With a Little Help From My Friends

Posted on: March 17th, 2016 by
6

When I was going through cancer diagnosis and treatment, my friends asked me whether I needed help. Things like grocery shopping or helping me run errands.

My answer was always, “No, I’m okay.”

Of course I really wasn’t okay — far from it.

My friends and I spoke and got together when I felt up to it. But several variables factored in my refusing their help:

I didn’t want to trouble my friends.

I hated depending on others. Still do.

I wanted to appear strong and tough.

Plus I was brought up with a stoic pull-yourself-up-by-your-own-bootstraps mentality. My extended and nuclear families don’t believe in seeking help for problems. So, not surprisingly, my philosophy turned out the same.

So, here I was, suddenly transplanted in Cancerland, refusing my friends’ offers of help. Here I was, feeding the roots of stubborn independence and isolation. During the time of my life I needed the most help, I would not relent.

I was standing in my own way — all because of damned pride.

I became my own albatross.

Five years later, my prophylactic bilateral mastectomy with DIEP flap reconstruction found me swallowing my pride and seeking help. This time, when friends asked me if they could help, I eagerly accepted. Friends came through for me — from grocery shopping to running errands to bringing me food.

I didn’t even realize that so many people loved me.

And I learned a major life lesson: that good friends want to help an ailing friend. It makes them feel useful and helpful to know they are doing something worthwhile, often in scary medical situations that are out of their control.

So if you are finding yourself on the patient end of things, here are just some things you can do to get the help you need. I’m not suggesting that the following choices are always the right choices for your particular situation.

But overall, here are my take-aways (not listed in any order of importance):

1. You don’t have to say you’re okay when you are not. It’s acceptable to react to medical news any way you see fit.

2. Reach out and ask the right friends for help, even if it’s a small favor like bringing food over.

3. Let friends know the best times to call you, or whether you don’t have energy for callbacks.

4. Phone conversations are a great source of support. Don’t feel bad if you are too tired to talk; it’s okay to allow others just sit and read at your bedside.

5. If you have kids and/or pets, feel free to ask your friends to watch them at times.

6. Practice mindfulness.

My friend Virginia who supported me through my DIEP

My friend Virginia who supported me through my DIEP

When have you sought or not sought out help from your friends? I want to hear from you.

Are there any points that resonate with you?

Are there any points that you would add?


Portrait of an Art Student

Posted on: March 11th, 2016 by
15

I’ve always loved art.

I so enjoy getting lost in the reverie, the flow, that artistic expression brings about. I’d be happy living in art museums. And at my favorite art supply store, I want to purchase everything.

Yes, I’m an art glutton, easily seduced by pencils and brushes and easels and colors and the feel of brushing oil paint on canvas.

Art was important to me before cancer and my divorce, but it has become a lifeline after these major life tragedies. Art calms me like nothing else.

When I separated from my husband, I moved to an apartment that was literally next door to a Hobby Lobby arts and crafts store. In fact, my bedroom window overlooked the front of the store. So fitting.

Hungry to create art, I eventually ventured into the store. I bought a few oil paints and a few small canvases and did some rough paintings of cups and saucers, a vase of flowers, and so on. I loved the feeling that painting gave me.

Then, one day, the Hobby Lobby advertised weekly oil painting classes and posting the supplies needed. And it was only $10 for a 2-hour lesson, $35 in advance for four two-hour lessons. I called Hans, the art teacher, and he told me to bring a picture of a scene that inspires me.

My first painting, Smoky Mountain Snapshot

My first painting, Smoky Mountain Snapshot

I love the Smoky Mountains, so I brought a calendar with a picture of the Smokies to my first art lesson. And that was my very first oil painting under the guidance of an artist. I was his only student for a year, and I learned a lot – from how to properly hold a paintbrush to mixing colors to using various brushstrokes.

I painted continuously at home – from landscapes to animals such as predatory birds to vases of flowers to portraits.

Leopard

Leopard

When I painted, I felt a freedom I never felt before.

When I painted, cancer and divorce didn’t exist.

I couldn’t be happier.

Art Teachers Gone Bad

About a year after my first lesson, two other students joined, and they were quite talented. In fact, this is when things between me and Hans broke down. The students drew and painted better and faster than I did, and while I accepted that, I couldn’t accept Hans’ favoring them.

Teachers are not supposed to express partiality. As a writing teacher, I know to treat all students equally, find their strengths, and help each student feel more confident in his/her writing abilities. I am positive with my students, not harsh.

Unfortunately for me, Hans became enamored of these students’ artwork, and he became harsh with me. When I painted a Monet reproduction at home – for fun – and then brought it to art class to show Hans, he looked at it with disgust and said, “This is bad.” Not only did he hate Monet, he bullied me for trying to reproduce one of this artist’s works.

Although he apologized for what he said, his attitude toward me didn’t change. He overly praised the other two students and criticized me – for everything. He didn’t allow me to experiment with abstract art. He said I “ruined paintings.”

Vase of Flowers
I was caught in a whirlwind of despair and indecision: do I quit art class or stay? I didn’t even think to pursue other art classes.

Eventually, the decision was made for me. I would get “artist’s block.” I would sit at the easel and feel stifled. Hans made it seem that it was my fault I could no longer paint. So after two years of attending oil painting classes, I quit, feeling like I had no place in the art community.

Years later, I was excited to be taking a 6-hour intensive oil painting class, hosted by my favorite art supply store and taught by an outside artist.

The problem: the teacher was an asshole.

When I arrived, he insisted I didn’t belong in the class, even though my name was on the roster. He was used to only his “regulars,” the students who always took his classes. I was the outsider. Each time we painted, he’d walk around appraising our work. He’d praise others’ work, but when he’d appraise my work, I’d cringe.

He accused me of falling too much in love with my painting (don’t know where that came from). I painted but started feeling a familiar paralysis; I couldn’t be myself. He must’ve sensed I was having difficulty painting and dished out abuse. At a break, I said nothing, just packed up my stuff and left.

Later that day, I complained to the host art store. The store manager told me he had had his doubts about this art teacher and my call confirmed these doubts. To make amends, the manager would leave a coupon for me at the store – for 30 percent off everything on my next shopping visit.

Somehow that didn’t fully appease me because I view art as sacred to the soul. And while a coupon is nice to have, this teacher temporarily broke my spirit. And this is unforgivable.

Kinder, Gentler Art Teachers

Despite my difficulty with a couple of loser art teachers, I took another chance at art, this time at a nude-figure drawing class at a local college. I yearned for art, but I hoped this class would help me face my lumpectomy-caused body-image issues. I translated some drawings into oil paintings.

Diagnosis, one of my nudes translated into oil painting

Diagnosis, one of my nudes translated into oil painting

The professor was marvelous and helped me grow as an artist. She did this by complimenting my style and by challenging me to use different techniques. I stayed in the class until my bilateral mastectomy and returned about a year after the surgery. But I wasn’t the same person and had severe body image issues. So I left.

My best art teacher, however, was an amazing artist whose paintings were in the Pentagon and in various famous venues. He gently challenged me to use new techniques and depart from my comfort zone, while being positive about my artwork. This wonderful teacher undid all the damage the other two oil painting teachers did to me. I became confident and no longer felt like I didn’t belong in the art community.

Ballet Dancer

Ballet Dancer

These days I continue to draw and paint on my own. When I focus on artwork, I stay in the moment, and the disturbing realities of life don’t exist. I’m now teaching Ari art techniques and we paint together. I know better than to stifle my daughter’s creativity. And I hope she, like me, will love art forever.

What do you do for relaxation? I would love for you to share your hobbies.

What do you do to alleviate stress?

My first draft of Ari with elephant bells

My first draft of Ari with elephant bells


Straying the Course

Posted on: March 4th, 2016 by
19

I’m the kind of person who always starts what I finish. When I have a goal in sight, nothing — and I mean nothing — deters me. I am willing to do what it takes to stay the course. I am not a quitter, not by any stretch of the imagination.

But I quit taking Aromasin about halfway through my regimen. I felt like a failure then. Still do.

A disclaimer: This post chronicles my experience with aromatase inhibitors (AI). I am not suggesting that people quit their AIs, nor am I offering medical advice.

***
After chemotherapy and radiation ended, my oncologist put me on the aromatase inhibitor Aromasin. The plan was for me to take this AI for five years. My hopes clung on these pills; I never skipped a dose, and always took the pill at the same time each day. Understandably, I was so afraid of the devil called cancer, nothing would stop me from taking this medication.

At first, I tolerated Aromasin well. I was happy to be taking a drug that could improve my odds of not getting breast cancer again. I clung to these pills as someone in the ocean clings to a life raft. Aromasin seemed a salvation of a sort for me, and I felt I had an extra security net. At that time in my life I was athletic, and I jogged, swam, and did weight training.

Several months into my medication regime, I started feeling joint and bone discomfort. I didn’t know why. The discomfort wasn’t enough to deter me from living a quality life. I had an active social life and kept exercising, my workouts averaging two hours each.

One thing to know about me: I have a relatively high pain tolerance. I hardly needed pain medication after my bilateral mastectomy with reconstruction. With all the procedures done to me in my lifetime, I have felt pain, but I tend to tolerate it well. That’s not to say I’m a pain addict and a hero: if I need dental work, I tell the dentist to maximize the novocaine. I had a pain killer readily available after my DIEP flap procedure. I just like to have pain killers around — just in case.

So when the bone and joint pain started and continued, I easily ignored it.

Then it got worse. I started taking Tylenol, but I continued exercising. I didn’t yet realize that the pain might be a side effect of the AI. Fear was starting to plague me; I wondered, did I have a recurrence? The pain worsened over time, but I refused to call my oncologist because I was scared he’d tell me I had cancer again. And that fear was greater than the discomfort of the pain.

The bone and joint pain got significantly worse after the one-year mark of taking the AI. It was affecting the quality of my life, but I kept exercising and continued being active. The next year would find me in quite a lot of pain, excruciating at times. I still refused to tell my oncologist, fearing the worst.

After the two-year mark, the pain became unbearable and crippling. Even breathing hurt like hell. At this point, I was in anguish and became an animal trapped on a never-ending Ferris wheel of pain. I remember driving, crying all the way to my destinations because even the most minimal motions were excruciating. To relieve the pain I tried weightlessness — floating in the pool. I remember painfully stepping into the shallow end and floating, with no relief. It hurt to float in the pool.

I had no quality of life.

I finally summoned up the courage (or the smarts) to tell my oncologist, who immediately put me on Femara instead. The pain, however, didn’t let up, so he made the executive decision to take me off AIs completely, saying, “This isn’t the class of medications for you.”

I felt a combination of relief and fear. I was relieved that the pain would go away, but I was so scared to lose a possible protection against a recurrence.

Was my oncologist taking a calculated risk?

Was he a gambling man?

Did he know that I could stay healthy even without an AI?

I know my oncologist does not make his decisions lightly, and he puts lots of thought into what he decides.

I didn’t choose to go off the AI; he made the decision for me, so that took some pressure off me.

Still, I don’t like being an aromatase inhibitor drop out. It’s not something I’m proud of. Sometimes I feel shame and blame myself for not being able to finish what I started, especially a medication that could protect me against a recurrence. I feel like a failure. A quitter.

As the pain eventually subsided, I felt grateful. But to this day, I don’t know if going off the AI was the right thing to do. In the world of Cancer Land, there are no guarantees.

My friend Nancy Stordahl recently posted two excellent posts on her experience with aromatase inhibitors, which inspired me to write this post. You can read them here and here.

Ferris wheel

How do you feel about aromatase inhibitors or any other kind of medication you are taking to hopefully ward off cancer?

Did you ever have to stop a certain treatment? If so, how did that make you feel?