Book Launches a Heart-to-Heart Talk

Posted on: April 22nd, 2016 by
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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
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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
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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
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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
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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?


Random Acts of Kindness

Posted on: February 17th, 2016 by
12

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“In the end only kindness matters.”

— Jewel, “Hands”

Last week, I participated in a tweetchat about the value of kindness in medicine. While this topic is a no-brainer — yes, doctors and patients should be kind to each other — unkindness is rampant in medicine.

Being on the patient side of things, I’ve seen firsthand the harm caused by unkind medical personnel — from administrators to physicians. What amazes me is that so many unkind professionals (I realize this is an oxymoron) are face to face with patients every day. I’ve been treated so poorly by some medical people, it’s disgusting.

As my readers know, a second-opinion oncologist told me that I was in danger of dying (I was newly diagnosed with breast cancer then. Duh.). He flippantly told me that I shouldn’t even consider fulfilling my dream of having a child because I would orphan him or her.

How could he be so cruel? Couldn’t he see how frightened I was? How could this self-important, arrogant ass live with himself after making such a comment?

After that appointment, I got in the elevator and sobbed uncontrollably, as I fell to the bottom of my bottomless world.

A surgeon sneered at me when I tried to explain my fears to him. Another surgeon scolded me like a bad little girl for not removing organs he felt should come out. He was angry that my primary care physician and oncologist didn’t agree with him and he blasted me for it. A receptionist announced my business so loudly that everyone in the waiting room could hear it. Even before she opened her mouth, that day was an especially bad one for me. An MRI had revealed a possible recurrence in the breast that had had cancer a few years before, and I was weighing my chances of life and death. Luckily, the mass was benign — unlike the receptionist.

On the flipside, patients can be rude. A couple of doctors have told me that some patients have treated them harshly — from arriving to appointments late and then expecting to see the doctor immediately to just plain having a nasty attitude.

Kindness should reciprocal between patient and doctor.

In fact, the tweetchat I participated in got me thinking: kindness also matters outside of medicine. I know this is no grand epiphany, but it amazes me how often people are unkind to each other. So when the tweetchat moderator asked us to commit to one random act of kindness, I immediately thought of many random acts of kindness I could commit to. Of course, with only 140 characters to type per response and other participants wanting their say, it would have been unkind of me to dominate the tweetchat with all my ideas. So, here on this post, are five random acts of kindness that have been done to me and five random acts of kindness I’m committing to doing from this day forward. Not all of these are cancer-related, which is fine, and they are not listed in any particular order of importance.

Random Acts of Kindness Done to Me

1. In a chemotherapy room, when a nearby family saw that I was receiving chemo alone, with no loved one by my side, they took care of me. Although their daughter had a grim prognosis, her parents focused their attention on me, as well. They got me apple juice, a warm blanket, offered me treats, and so on. I was their other daughter for the day! I thanked them then, but I wish I could thank them again, in an e-mail or something. What they did that day was extraordinarily kind to me, and I will never forget them.
2. When one of the radiation machines was getting repaired, the wait to radiation treatment was understandably longer than usual. My radiation oncologist and her staff handed out potted violets to each of us patients for the simple act of waiting. I don’t know how they got so many violets so fast, but the doctor and other medical personnel worked their magic.
3. After my failed stereotactic core biopsy, my surgeon magically appeared and did the biopsy then and there. The nurses rubbed my legs and held my hand. For that act alone, I love them.
4. At times students or alumni write me an e-mail or a note telling me how much I’ve meant to them. I treasure these communications.
5. My daughter is kind. One time, I couldn’t help it but cried in front of her about the situation with my dad breaking his hip. We were in my parents’ home in Florida at the time after a stressful few days, and as I cried, she wiped my eyes with a tissue and told me that it would be okay.

Random Acts of Kindness I’m Committing To

1. I hope to make a positive difference in my students’ lives and help them.
2. I’m going to say something nice to a cancer patient and/or their loved one(s) while we are waiting to see our oncologists. This is the one I committed to on the tweetchat, and this random act of kindness will be the most difficult for me. Normally, I stay to myself, paralyzed by fear and sick to my stomach. But I want to reach out and talk to someone else who might be afraid. Maybe this will backfire — after all, everyone handles the waiting room wait differently, but maybe I can provide some comfort to somebody else.
3. I will tell at least one doctor how much I appreciate him or her.
4. I will reach out to others whose hearts may be heavy, just to see how they are doing.
5. I will be kinder to myself each day. I won’t berate myself for not exercising hard enough or for not accomplishing every goal. Instead, I will show myself the same kindness I show others.

Tree and light

Is there an act of kindness you received or gave? Please feel free to share; I would love to hear about it.

Is there any random act of kindness you’ve committed to? If so, please share.


Let’s Talk Bones

Posted on: February 8th, 2016 by
13

A few weeks ago found me en route to Florida again, this time for an extended weekend. While I wish I could say the weather and a relaxing vacation were beckoning, I came to the subtropics to comfort my mother, visit my father in the rehabilitation center, and meet with rehab staff.

As you know, my father broke a hip. He has osteoporosis and had fallen out of bed onto a carpeted floor. While my brother and I were in Florida together a couple of weeks before my latest visit alone, we were industrious — we ordered and installed various home equipment for my dad for when he returned home to recover even more from the surgery. Such equipment included a shower seat and a guardrail on the bed.

When my dad was in the hospital recovering from surgery, I asked the charge nurse what his prognosis might be. (I missed the doctor who stopped by earlier.) She gazed through me and gave the same rote answer I’m sure she gives everyone, “If he works hard in rehab and builds up his strength, that is key. People who do this tend to do well.”

Yes, but still I wondered, how many people actually do this? I could read between the lines on her face that he was not going to do well.

At rehab, the occupational therapist taught us the best ways for my dad to move in order to heal and how to move when he is at home.

We anticipated that he would eventually make a full recovery.

Then, as my brother and I continued to get and assemble the proper home equipment for our dad, I realized that perhaps the very act of assembling the equipment was our way of holding onto hope that he would make a slow-but-full recovery.

We hoped he would be able to walk again. Prior to the fall, he and my mom were ballroom dancing two to three times a week and, in their younger days, won awards for their dancing.

I now realize that their ballroom dancing days are over. And perhaps his walking days. He is wheelchair-bound, with dementia and Parkinson’s disease. He is now home with aides there to help for much of the day. My mom is just living one day at a time, coping the best she can. Therapists are working hard with my dad, but things are not going so well. One doctor said the bone break and surgery “really set him back.”

I’ll say.

****

A few weeks before my dad’s fall, my mother was diagnosed with osteoporosis, with 50 percent bone loss. She had been so involved taking care of my dad these last few years, that she forgot to take care of herself and complement dancing with other bone-strengthening exercises, although that’s not all to the story. I think she has a genetic predisposition to the condition.

Luckily, she is now exercising and taking better care of herself.

I worry about her falling, too.

****

My latest dexa scan this winter showed me still stuck in osteopenia land. Oddly, this is good news. My bone density hasn’t worsened in two years. But I know osteoporosis is an unwelcome next-door neighbor, thanks to the collateral damage of cancer treatments and early menopause.

Add the genetic osteoporosis component, and my bone health is hanging by a thread.

When I first thought about possibly having osteoporosis in the future, I was angry. And afraid. I still am, actually. Bad gene pool, bad chemo pool. I remember having had slight bone fractures over these post-cancer years, and I wonder if they were due to low bone density.

Sadly, it seems I will always have osteopenia. But I will fight my hardest against getting osteoporosis. I’ve heard and seen too much about this condition to just not try to fight back.

I must make adjustments to my diet and be more vigilant about eating calcium-rich foods, balanced by calcium and Vitamin D supplements. Weight bearing exercise is key. This includes walking and lifting weights. I’ve started a new exercise regime, and I’m hoping it pays off.

In the meantime, my brother and I will try to help my parents out as much as we can long distance. I’m reassured that today my brother and his family are at my parents’ house to help out in any way they can.

In the meantime, I will continue to take preventive actions. And I will hopefully break the family osteoporosis legacy.

Palm trees close up

Have cancer treatments adversely affected your bone density?

Do you have any tips to increase bone density?


10 Ways to Cope With PTSD

Posted on: January 26th, 2016 by
9

Going through cancer and its treatments causes physical collateral damage, but the debilitating psychological impact of cancer is not as often discussed — particularly Post Traumatic Stress Disorder (PTSD).

I know this firsthand, as my readers know.

I’m a card-carrying PTSD member.

I first disclosed my struggles with this disorder a year ago, and have been open about how my cancer trauma resulted in PTSD. For years I hesitated to reveal this aspect of my life, as I know there’s still a stigma associated with mental disorders. Luckily, I’m part of a wonderful online community that has accepted and supported me, and I have many other support systems in place.

Many people with this condition are not so lucky. And that’s why I wrote this post: to help those who find themselves with PTSD and those who may not know how to begin turning their lives around.

This post is proof that someone can live a quality life with this disorder.

Here’s my disclaimer: I’m not a psychology professional; I’m sharing what works for me, and my advice is solely based on my own experiences. This post is not a substitute for professional help. In addition, everyone is different, and methods that work for some may not work for others.

That being said, here’s my list of 10 ways you can cope with PTSD; these are not presented in any particular order of importance, and this list is not all inclusive.

1. Don’t allow the stigma of having a mental disorder imprison you. Seek the help you need. Society can be quite judgmental and attach a stigma to mental disorders, but you need to think of your own psychological needs and take care of yourself. Just as you’ve gone through cancer treatment to hopefully eradicate cancer, it is crucial that you be proactive in your psychological well-being. And it’s up to you whether to share with relatives and friends what you are going through.

2. Reach out to professionals who can help you. This may include a psychiatrist for medication and/or a psychotherapist skilled in treating trauma. Besides medication and traditional cognitive psychotherapy, I’ve worked with my therapist through EMDR (Eye Movement Desensitization and Reprocessing), a treatment used to combat PTSD. It’s been highly effective for me.

3. Practice mindfulness. Slowing down and focusing on our actions or inactions can cause a feeling of serenity. This is a cliche, but you need to savor each moment. As difficult as this is to do while in the throes of depression, try your best to slow down and focus on basic actions, such as eating, moving, or just observing a beautiful seascape.

4. Exercise. People exercise for a variety of reasons, such as losing weight and getting into better shape. These are valid reasons, but I have found exercise to help my mental state. Exercise calms my mind, and I feel mentally and spiritually strong for days after a workout. By “workout,” I mean any kind of exercise your body can handle, depending on your body’s strengths and/or limitations, as well as your desires and goals.

Exercise can include tai chi, yoga, walking, swimming, running, ice skating, dancing, shoveling snow, mowing the lawn, or even cleaning the house. My gym offers aquatic tai chi, and it’s wonderfully gentle. Right now I’m looking for a yoga class I can tolerate: I’m admittedly a three-time yoga-class dropout, but I’m hoping the fourth time is the charm. Particularly, I’m looking to join a yoga group for elderly people.

The key is just to get moving and to be creative with your exercise goals.

I’m convinced that if the endorphins from exercise could be bottled and sold, they would be one of the hottest-selling items.

5. Have an active social life. Stay in touch with friends and family who lift you up. The worst thing one can do is isolate him or herself and open the door to depression and anxiety. Meet a friend for coffee, another one for dinner, and so on.

6. Conversely, avoid toxic people who drain the life out of you. To determine whether someone is too draining for me, I use the metaphor of a cup. My imaginary cup measures how much stress I can take daily; the key is to end each day without the cup being full. I evaluate whether certain people fill up that stress “cup” faster than others. To my dismay, some people have consistently filled my stress cup. They are no longer my friends.

I’ve even ended my affiliation with a breast cancer support group filled with toxic individuals who made my cup runneth over. In fact, I remember a “friend” in this group who stole my time through her negative gossip about others, endless diatribes about her life, and complaints about everything. After I parted ways with her, the quality of my life improved dramatically, and I never looked back.

Toxic family members are often more difficult to avoid. If you can, minimize your precious time with individuals who drain you.

7. Keep a writing, art, or music journal. Use a creative outlet to help you sort out your feelings. Many people do not think of themselves as creatives, but truth is, we all have a spark or two of creativity. Use the medium of your choice regularly, and chances are you will find it cathartic to write, draw, or even sing about your experiences and what is bothering you and lifting you up.

8. Meditate. You can meditate the traditional way, or through creating art, writing, sewing, crocheting, arts and crafts, and/or coloring in the popular coloring books for adults. These are all meditative, relaxing activities. I know I am terrible at traditional meditation, but when I oil paint or write, I am transported to a relaxing place, and I’ve come to realize that my hobbies allow me to meditate my way.

9. Tap into/avoid social media. Social media venues such as Facebook and Twitter help me reach out to other people affected by breast cancer. The online support community is important to me. That being said, too much of a good thing is actually not a good thing. Limit your social media time. If you’ve been diagnosed with PTSD, it’s even easier to get overstimulated by social media than the average person.

My goal is to allot certain times for social media, including shutting down all my access to social media and anything technology-related at least two hours prior to bed. Facebook and sleep simply don’t mesh well.

10.Finally, and related to point #9, get enough sleep and rest. Insomnia has historically been my Achilles’ heel, but each year I get better in my sleep goals. Rest is vital for your body and mind. Being short of sleep is a recipe for poor mental health.

These tips are not intended as “quick fixes,” but they can still help anyone who’s coped with trauma. Those with PTSD have to work extra hard to stay mentally healthy. Hopefully, this post will make coping with trauma a bit easier.

Ocean

Which tip(s) resonate with you the most?

Do you have any advice to add to this list? What helps you spiritually and mentally?