Cosette

Posted on: December 1st, 2016 by
6

cosette1

I’ve been away from the blogosphere for awhile now. What kept me away was a perfect storm of being super busy, the horrific U.S. election and its even more horrific results — and the failing health and recent death of my beloved cat Cosette.

It’s fitting I write about Cosette today, as it’s the 10th anniversary of my bilateral mastectomy with DIEP flap reconstruction.

The two don’t seem related, but they are.

As mentioned in a previous post, I got Cosette almost 16 years ago, the day after I was diagnosed with breast cancer. We were both very sick and were even hospitalized at the same time. And one doctor told me I wouldn’t live, and one veterinarian told me Cosette wouldn’t live much longer.

To use a phrase from the movie Forrest Gump, she and I went together like “peas and carrots.” It was a perfect match. She helped me get through chemo and radiation, and I helped her recover from her nasty upper respiratory infection. She helped me get through the divorce and was there when I rebuilt my life. And when I was recovering from my DIEP a decade ago — an intensely long recovery process — she constantly stayed by my side.

Cosette was a loyal, empathetic, giving cat.

A little over a week ago, my 17-and-a-half-year-old cat was diagnosed with cancer. And I immediately decided to have her euthanized the day after Thanksgiving. Her health had been declining, but she wasn’t suffering yet. I didn’t want her to suffer from the ravages of cancer, so on Friday, I let her go. The veterinarian and her tech made Cosette’s transition peaceful, merciful, and beautiful, making me wonder why people are made to suffer merciless deaths.

Before I left my deceased furry creature, I planted a long kiss on the top of her head and silently thanked her for being there through the light and dark times. A friend was watching Arielle, who cried when I first told her the news about Cosette being sick and needing to be put to sleep.

Believe it or not, the decision to have her put to sleep was an easy one. Cancer is a fucker.

Letting her go, on the hand, has been difficult. I am drowning in grief and sorrow. I’m lost without her. I am lucky to have another cat Hemi, who’s a charming, wonderful cat. But the wounds of grief for my Cosette keep tearing open. Yet, I must remember how blessed she and I were that she lived as long as she did and that we experienced more than nine lives together.

I want to share some things about Cosette that I haven’t shared before, for she led an interesting life.

* She was a Calendar Girl. She and I were featured as one of the pictures on a calendar for PetsNPatients, an organization dedicated to providing care and help for animals of ill people. The pictures were accompanied by a short blurb of how the animal helped the human during the trying times of illness. Accomplished photographer Christine Jaksy came to my house to take the pictures, which was quite a challenge. Trying to keep the energetic Cosette still long enough for a shot was difficult, but we got a few nice shots of us together.

* Cosette had more physical endurance than many cats. Sure she slept a good portion of the day, but she was the kind of cat who needed a lot of physical exercise; otherwise, she’d bite my ankles. So I threw a ball with a bell inside, and she chased it over and over again. Even two months ago, I saw her running around the house with no signs of exhaustion.

* She would lay on her back, and I’d roll a ball to her, and she’d roll it back to me — over and over again. Even though she was looking at me upside down, she rolled the ball back to me accurately almost every time. Once I was telling a group of colleagues about my cat doing this, and they were skeptical — until I showed them a video of Cosette and me playing this game. We quickly became the talk of the social hour. “You gotta see the video of this cat,” said one colleague to another.

* She loved being around people, especially me. Whatever room I was in, she could be found there. When I had company, she was always in the center of things.

* She was a brave, gutsy cat. Whenever a repairman would come over to fix something, she wouldn’t hide, but would saunter up to the repairman, curious as to what he was doing.

* She was spoiled. When it came to food, she was a grazer and, to keep Hemi from eating all her food and to get her to eat more, I spoonfed her. That’s right! The cat ate from a spoon for much of her adult life.

I was also spoiled. After all, Cosette was our beloved pet. She’d purr me to sleep most nights and stay on my bed for most of the night.

I have no regrets at all. My life is better for having known her. It’s difficult to go on without her, but she is forever carved in my heart.

cosette2

Do you have any stories about a pet you or someone you knew had? I would love to hear them.

Have you lost a pet? Feel free to tell me about your beloved pet.


Bully For Me

Posted on: November 3rd, 2016 by
4

Layout 1

Last week was my daughter’s school’s annual anti-bullying rally. Children, their parents/relatives, and school employees all wore blue to show our solidarity with each other against bullying. Our children each carried a blue sign that said, “I take a stand against bullying.” Like many schools, Ari’s elementary school has a “no tolerance for bullying” policy. I’m grateful for schools and individuals who take bullying seriously.

As we formed a large crowd of unity at the back of the school, with the playground in sight, I couldn’t help but think about the bullies I encountered in my young life. I winced as I thought of my monster bully. I was a teenager when the incidents happened.

The bully? An adult. My mom’s best friend. My best friend’s mom. Let’s call her M.

***
M’s daughter, B, and I had so much in common, it was no wonder we quickly became the best of friends growing up just down the block from each other in New York. Even better, our parents were close friends.

Kind of.

For the first few years of B’s and my friendship, everything was fine. Then when I became a teenager, the bullying started.

B’s mom was jealous of me. I was mature and driven academically, unlike B and her brother. I also started volunteering at a local animal hospital at 16 to get veterinary experience to prepare myself for veterinary school someday. B and M didn’t like the possibility that I might become a veterinarian and “out-do” them. (Becoming a veterinarian was my dream at the time.)

M and her daughter were seething with envy that I might accomplish more than they did. Whenever I was at B’s house, her mom would crush my spirit, telling me I wasn’t smart enough to accomplish my vocational dreams. Eventually B followed suit and picked on me, as well. Each time I had a counterpoint for why I could realize my dreams, the dynamic duo continued trashing me.

I would come home crying regularly after being at their home where the emotional abuse took place. My parents would try to comfort me, but mistakenly still encouraged my friendship with B, as they were still friends with B’s parents and were unwilling to relinquish the friendship. With my emotions so raw and teenage insecurities running so high, I continued being friends with B throughout college. After I switched my major to English, B and her mom gloated that their prediction was right: To them, I couldn’t accomplish that dream of becoming a veterinarian. My career aspirations were no longer a threat to them.

In addition, through high school and college, the venomous pair would made fun of my art, claiming I wasn’t a true artist. Every talent I had that B didn’t, her mother went on a toxic rampage against me. Once I graduated college, I got my head together and pressed the Delete button on my friendship with B without telling her or her mom why. Unfortunately, my parents continued to be friends with M and her husband, who actually was the nice one of the bunch.

Then, a fortunate turn of events. B’s parents retired early and moved to Florida. Finally, I wouldn’t have to hear about B and M anymore or worry about M stopping by when I was in town. There are many miles between New York and Florida, I gratefully surmised.

Until my parents retired and moved to the same area in Florida as B’s parents moved to. They are now minutes away from each other.

And like any parasite, M is trying to worm herself into my and my daughter’s life. M has thankfully never met my daughter, but M wants desperately to meet her so, I suspect, she can compare Ari to her own grandchildren and continue her legacy of bullying to the next generation. And M wants to rekindle B’s and my friendship, so we can pick up where we left off.

M is delusional. Ain’t gonna happen. Ever.

I’m all for letting the past remain in the past.

But what happens when the past invades your present?

***
Individual kids giving anti-bullying pledges into the microphone stirred me from my thoughts. And my daughter’s hand clutching mine gave me even more hearty resolve to make good on my promise to the universe that I would do my best to keep her safe.

As a mother, I will do my best to protect Ari’s emotional and physical well-being. And I know how sacred a child’s dreams are. Ari has a right to dream, and nobody has the right to take that from her.

resized_20161103_124312

Have you ever been bullied or know of someone who has?

If I ever meet M, which could happen despite the unlikelihood, what would you recommend I say?


Embracing Autumn

Posted on: October 21st, 2016 by
6

Layout 1

As trees shed their leaves in my part of the US, I have shed my resentment toward a month set aside for pink merchandising and ribbons.

In other words, October is no longer “Pinktober” to me.

Truth is, October is not to blame for being dubbed Breast Cancer Awareness Month. October is innocent, and that is the way I’ve chosen to view this month this year forward. For some reason, I’ve been able to put my blinders on and avoid being bothered by the external pink hoopla.

To me, it seems the pinkwashing has diminished somewhat a little more each year. This year, I am getting fewer solicits to promote pink products on my blog. Ah, the power of the Delete button.

I always manage to pause to take notice of the gorgeous month we are in and how lucky I am to witness and marvel at the beautiful bursts of color of a changing landscape. In fact, fall is a great season here up north. So, putting a positive spin on October and autumn in general, here are 10 reasons I love fall. These are not listed in any order of importance.

1. Apples! My very favorites are Honeycrisp apples. If you haven’t tried them, you ought to. The juice drips down your chin every time you bite into this delectable apple. Last week we went apple picking, which Ari loves! We went to an apple orchard in Woodstock, IL, which is, incidentally, the town where Groundhog Day was filmed. We picked Golden Delicious and Jonagold apples. No Honeycrisps there. Sniff. But we loved the taste of these juicy orbs, so all was good.

Picking apples

Picking apples

2. Hot apple cider. Put a little cinnamon in it, and you are good to go.

3. Fall colors are simply amazing. Every fall, the shock of colors amazes me. Like most people, I love color, and the leaves on and off the trees paint the landscape magnificently.

4. Feeling the crunch of leaves under my feet, much as I love the sound and feel of snow under my feet.

fall1
5. The cool, crisp air that smells of fallen, crispy leaves.

fall2

6. Hayrides. Being from the Bronx, I was never exposed to hayrides, so I had no idea what they were. I learned in college. I did enjoy the experience, although it took place at night. I do remember a branch or something grabbing my hat, so that item of clothing was soon gone.

7. Halloween, the mild kind. I wasn’t sure whether to include this one on my list because I detest the morbidity and bad behavior that Halloween brings out in people. For example, when I was growing up, some strangers would doctor up candy and such so it was harmful for children. I cannot understand that mentality. Another thing I cannot stand about Halloween is its glorification of gore and death. The holiday is really not my thing, but it made the list because the mild kind is just fine. My daughter dresses up as a ballerina, and we have fun handing out candy to the neighborhood kids. Mild, not wild, is my motto.

halloween

8. Pumpkin decorating. I’ll bet you noticed I didn’t say “carving” because I really suck at this. I prefer to draw faces on pumpkins. One year, Ari and I carved two pumpkins in earnest, roasted pumpkin seeds, and put a candle in the pumpkins. We had a blast. I bought Ari a pumpkin recently, but she lost it in her messy room. How can you lose a pumpkin in a house, you may wonder. Well, we did. Now we’d better find it before it rots.

9. Pumpkin pie. No, I’ve never made it from scratch from an actual pumpkin. I get the pumpkin a la can.

10. Thanksgiving. My favorite holiday in the entire universe. With commercialism dominating some of the other holidays, Thanksgiving has remained untouched by commercialism. No politics of gift-giving involved (sorry to sound like Scrooge — and yes I do give and receive gifts), but Thanksgiving is just about being grateful and spending time with loved ones. When I was an out-of-state college student, I started a tradition of cooking a Thanksgiving meal for all my out-of-town friends who couldn’t get home for this holiday. I’ve always loved cooking a Thanksgiving meal. This tradition has continued until the last year or so. I cooked for my out-of-town friends who, like me, didn’t have family around. Now we all have other plans, and I usually go over to a friend’s family’s home for a Thanksgiving meal. It’s so difficult for me to relinquish cooking, that I make a Thanksgiving meal the next day.

Well, there you have it. The 10 things I love about autumn. This list is not all-inclusive.

fall-3

Do any items on this list resonate with you? Any other things about fall you like?

If you are from another region of the country or from another country with a different climate, are you happy with your climate? What do you love about your climate in fall?


Much Ado About Something

Posted on: October 13th, 2016 by
8

Ari and me (left), my brother and sister-in-law and nephew

Ari and me (left), my brother and sister-in-law and nephew

What a summer and fall it’s been thus far!

It’s been a busiest-busy time for me with the launch of my new book, Calling the Shots in Your Medical Care. The book was released July 5, 2016, and reviewed here, here, and here. To those who have reviewed my book and/or who have spoken highly of it, thank you so much. I appreciate all your kind words and literary love.

In July, I threw a book launch party at Bespeak Studios in the heart of Chicago.

KODAK Digital Still Camera

The party was fun and exciting — with a couple of firsts:

I never threw myself a party before.

Ari had never before attended a book launch party, and she discovered the significance of celebrating a book’s launch. Of course, for Ari, a party is as good a reason as any to get dressed up. So there she was, in her dress, enjoying being my reading pal.

I’ve since started participating in a round of student readings at the college where I work, Robert Morris University Illinois.

Ari and Momma during the book launch reading

Ari and Momma during the book launch reading

At a reading at school this week

At a reading at school this week


Cancer and the Imagination

Posted on: September 30th, 2016 by
4

Layout 1

When I was a teenager, I wished my active imagination would always stay vivid.

Unfortunately, that wish came true.

***

Being diagnosed and treated for cancer unleashes a maelstrom of emotions. But lately I have been wondering if a cancer experience heightens our imagination. We imagine our deaths. We imagine our physical pain and suffering even before we endure these. Our post-cancer-diagnosis minds go places that our pre-cancer minds did not.

One would think that, 15 years after diagnosis and treatment, I rest easier with each passing year. That time and distance heal. But truth is, each year presents me with more mental obstacles. Each year I struggle to manage my PTSD.

My imagination center, which I was once grateful for, is now a Pandora’s box of horrible scenarios. The active imagination that once led to fun stories and wonderful daydreams is now filled with nightmares. I don’t rest easy nowadays, although I try my best to do so and to live in the present.

But every so often, something jars my imagination.

storm

For example, this week my best friend, let’s call her K, had an outpatient surgical procedure. I drove her to and from the surgery and stayed with her in pre-op. While the nurses were hooking her up to an IV, I heard the beeping and sounds of the machine that measured her vital signs. I glanced over at the monitor and suddenly I was triggered: I perceived the monitor lights as turning black and white and flashing in my head. The smell of latex made me sick. I felt numbness around my mouth. I was having a full-blown panic attack and PTSD flashbacks, but I kept it under wraps for the emotional well-being of K.

With each medical visitor who came by to visit K and explain the medical procedure, and with the beeping of others’ monitors as well, I experienced a hurly-burly of emotions. I wanted to crumple into a ball and cry continuously. My mind went back to when I was going through cancer treatment. My mind went back to the time I lost Faun. To the time I lost Virginia.

I cannot lose K.

Then I was in the waiting room, where unruly panic seized me. I tried to reassure myself when I saw doctors coming out to speak optimistically to loved ones about their loved ones’ procedures. I kept hearing, “All went well. She’s resting comfortably” and “He did great; we found nothing major.” Then it was my turn to find out how K was. And to my shock and fear, a Day Surgery staff member told me, “The doctor wants to see you in the consultation room.”

My imagination spiraled out of control at 1,000 miles of panic per hour. I wondered, why do I need to be seen in the consultation room when every doctor has been coming into the waiting room to see family and friends? My PTSD spawned catastrophic, irrational thoughts: “I’m sure the doctor wants to see me privately because my friend has cancer” and “Why am I being ushered in the consultation room if it’s not serious?” and “Is my friend alive?” The walls of panic kept closing in on me, and breathing became difficult. On shaky legs, with numbness spreading to the rest of my body, I walked into the consultation room.

Thankfully, the doctor showed up shortly after. The waiting game simply isn’t my cup of tea.

The physician seemed calm, relaxed, and smiled, explaining the procedure and showing me pictures of the surgery, which kept me in my heightened state. She took a biopsy and is sending it to pathology to see if there’s cancer or a pre-cancerous situation. K would know the results early next week. All I had to hear was the word “cancer,” and my mind wandered the dark crevices of imagination. Desperate to get the doctor to say, “It’s not cancer,” my numb mouth said, “But it could be benign, right?” The doctor was unreassuringly reassuring: “It absolutely could be benign,” she smiled. “We just have to see what pathology says.”

My rabid mind went through repetitive loops, replaying the most horrible scenarios. Thanks, cancer, for fucking with my imagination.

I thanked her, returned to the waiting room for an hour while my friend was in recovery. And all I kept thinking was how it probably was cancer and how my PTSD was heightened and how I wish I had brought Xanax with me. Oh and how I needed to pencil in an appointment with my shrink.

When I was permitted to see my friend, I relayed to her what the doctor said, all the while keeping my paranoia at bay to reassure her. We are still waiting for results, and every minute seems like a lifetime with no lifeline. My wise friend said, “I won’t worry until there’s something to worry about.” I’m trying to embrace this perspective.

According to the insightful novella Typhoon by Joseph Conrad, having too much imagination can be a negative quality. The story centers around a new seaman who feels superior to a boring steamship captain because the captain has “just enough imagination to carry him through each successive day, and no more.” Yet, when a massive typhoon hits the ship at sea, it is the unimaginative captain who is able to safely guide the boat. The new seaman, who has a vivid imagination, cowers and crumples under the weight of disastrous what-if scenarios.

I now find myself longing to be the steamship captain. I want minimal imagination these days, just enough to get me through each moment. So whenever a storm comes, perhaps I’ll finally know what to do.

Do you feel cancer has played with your imagination? Either way, I would really like to hear about your experience(s).


Book Review: Why is She Acting So Weird?

Posted on: September 23rd, 2016 by
6

why-acting-weird

Cancer is complex: it affects every aspect of a patient’s life — including friendships. As I write this, I recall those friendships that strengthened with my breast cancer diagnosis. And, sadly, I recall those friendships that simply withered away.

People react to their friends’ cancer diagnoses in many ways for many reasons. Those who choose to continue their friendships are in for a shock at why their cancer-patient friends have changed. A wonderful book addresses how cancer affects friendships. Directed at friends of an ill person and offering advice on how to maintain a close friendship with a friend who has cancer is Why is She Acting So Weird?: A Guide to Cultivating Closeness When A Friend is in Crisis by breast cancer survivor Jenn McRobbie.

This book is a real treasure.

Written for the friend of a diagnosed person, the book unearths the vast complexities of being friends with someone in crisis, especially if that person is dealing with cancer. McRobbie offers spot-on advice. Such advice is to make sure the reader develops a support system for herself during a friend’s crisis. McRobbie encourages readers to “Step Out of Your Shoes,” advising readers to envision what it’s like to be in her friend’s shoes and not to push friends away. She recalls how some friends did not give her what she needed at the time of her medical crisis. McRobbie emphasizes the importance for a good friend to “make space for your friend’s grief.” She advises the friend to “remain present” while the diagnosed friend expresses how she feels.

She says, and I wholeheartedly agree, that the word “should” ought to be banned.

One of the most important parts of the book is when McRobbie addresses social media. McRobbie warns, “Since you’re looking to support and comfort your friend, you need to be quite selective when communicating with your friend on social media,” noting that “….social media complicates matters when someone is in crisis.” She covers the etiquette of sharing information when a friend is in crisis. McRobbie offers sound, cautionary advice on sharing a friend’s situation on social media. She says, “If you’re unsure what to say on social media, stick with posts that aren’t about your friend.” Perfectly said.

McRobbie also emphasizes how important actions are, as she recalls friends who rallied around the diagnosed McRobbie and took her daughters to school daily.

The author covers what to say and what not to say to a diagnosed person. She is on point when she emphasizes that there’s no right way for someone to do cancer. She offers advice to the friend of a diagnosed person, such as building a communication plan so the friend can communicate effectively with the patient. In fact, McRobbie offers creative solutions. One of her most creative chapters is titled “Learning the Mathematics of Friendship.” I won’t tell you what it contains, but it is exceedingly helpful about how to be a good friend to someone in crisis. Throughout the book, McRobbie weaves her own story as examples that illustrate her points.

Overall, this book is perfect for people whose friends are in crisis, especially with cancer. Whether you are a cancer patient looking for a book for your friends, or whether your friend is the one in crisis, this book is a must-have.


No Bra Day Rant

Posted on: September 9th, 2016 by
11

Layout 1

I have news for those imbeciles who invented and/or celebrate No Bra Day: I already set my “boobies” free nearly 10 years ago when I had a bilateral mastectomy with reconstruction. I eagerly set them free because they came close to killing me. Ya see, my right “ta-ta” had a malignant tumor in it five years prior, and I had so much fun with surgery, radiation, and chemotherapy that I couldn’t handle another repeat slash-burn-and-poison party.

So I set my breasts free for good.

When my “girls” were set free and placed in a jar or wherever the hell they place breast tissue and analyze it, I discovered that my left breast — the supposedly healthy one — was filled with precancerous cells. And I was so happy that I possibly prevented a recurrence. But I was also numb, as I realized, yet again, how close to death my breasts brought me. Yet, even after my bilateral mastectomy with reconstruction, I still grieved for those horrible originals, those devils, because, call me crazy, I always wanted to keep the parts I was born with.

But instead, I had to set them free.

Post-mastectomy was a horrifying time. Recovery was a real bitch. ICU sucked. My chest and torso were adorned with so many stitches, they looked like railroad tracks over my whole torso. But whoo-hoo, I wasn’t wearing a bra then. Now the stitches are history and I have faint scars and fake nipples. And I must live every day with physical scars, but even worse, I must live with the emotional scars caused by breast cancer. Ya know, small things like body image issues and PTSD.

Today, almost 10 years after my surgery, I’ve come to accept my fake breasts — sorry, they are not perky. They are asymmetrical. That’s what happens sometimes when one has breast cancer. In my case, my right breast had a history before the mastectomy: It had a lumpectomy and re-excision, radiation, and another lumpectomy down the road. That breast got pretty darn hideously deformed. Then the bilateral mastectomy corrected some of the ugliness, but my cancer-affected breast is still a different size than my left unaffected one.

The good news is that I found a great mastectomy fitter who found a prosthesis for my right breast. So with my special, pocketed bra on and my prosthesis, I look completely symmetrical. This choice is not for everyone, but this is what I wanted.

Frankly, we should have a Keep a Bra On Day because each night I take my bra off the truth replaces the facade and reminds me of my grief and loss — thanks to the ugliness that is breast cancer.

Each night, for me, it is Set My Prosthesis Free Day. Because truth is, I resent the fact that I need a prosthesis. I resent that removing my bra each night means facing my cancer demons constantly. Most of all, I resent all those losers who celebrate No Bra Day.

A good candidate for Set My Prosthesis Free Day

A good candidate for Set My Prosthesis Free Day

It’s too bad that men afflicted with breast cancer cannot participate in No Bra Day. But then again, men are not sexualized like women are, so what’s the point in involving them in any kind of debasement?

I survived breast cancer thus far, but I don’t feel like celebrating. Because breast cancer isn’t a fun opportunity to party. Because breast cancer is a disease of grief, loss, suffering and, in too many cases, death.

No Bra Day is a bunch of bullshit.

Rant over. I just had to get something off my chest. Pun noted.

For an excellent post on No BRA Day, see the Cancer Curmudgeon’s excellent piece, How About a ‘What Cancer Really Does to Breasts Day’?.


Gilda’s Club: A Living Legacy

Posted on: September 2nd, 2016 by
6

Layout 1

I was saddened to hear about Gene Wilder’s death this week. For years, he and his wife Gilda Radner filled my heart and the hearts of many with laughter. I was devastated when Radner died of ovarian cancer in 1989. However, Wilder helped provide a living legacy, one that has inextricably bound me to the comedic couple: Gilda’s Club.

***

I was a cancer refugee.

I already had breast cancer — no way to run from that mess — but I was seeking refuge from its emotional toll.

I got what I was seeking at Gilda’s Club.

Living in Chicago, I was lucky to have a Gilda’s Club in my hometown. This organization offers a safe haven that provides free support and programming for anyone touched by cancer and their loved ones — friends and/or family. Such programming ranges from yoga, writing therapy classes, art classes, cooking classes, and a Christmas party with Santa Claus for the children.

At first I was hesitant to go all by myself, but I was urged by my aunt, a breast cancer survivor who attended Gilda’s Club in New York during her diagnosis and treatment. Each time I called her sobbing hysterically about cancer, she listened and offered warm support. And then she ended our conversation the way she always ended it: “Go to Gilda’s Club.”

I was terribly shy and didn’t want to go by myself. But the walls of despair and terror were suffocating me, and I needed more support than long-distance phone calls could provide me.

One day, I was downtown standing alone at the famous red door, the entryway to the physical building that houses Gilda’s Club. I had made an appointment with an intake worker, so she was expecting me. My heart was pounding as I rang the doorbell.

The door opened to a friendly receptionist’s face and a beautiful, well-lit interior. The welcoming intake worker gave me a tour of the many appealing rooms — there was a gorgeous kitchen, a reading room, general relaxation spaces, and an elevator to all three stories, for which my chemo-weary legs were grateful. The interior of Gilda’s Club was really a house — no, a home — offering a safe haven to people touched by cancer, their friends, and families.

The intake worker took all my information, and I received a membership card to a club that, like cancer, I never wanted to join. A part of me was still skeptical that Gilda’s Club could ease my constant emotional torment and fear.

“Every other Tuesday we have a chef teach our members how to cook a dish,” the intake worker told me enthusiastically. “It’s one of our more popular activities. You are invited to come today.”

I had nowhere comforting to go, so despite my skepticism, I decided to stay and check it out.

That evening I and a bunch of people I didn’t know saw a cooking demonstration and got to taste a dish of salmon and green-tomato ginger jam. Prior to my visit to Gilda’s Club, I had so much trouble eating, but for some reason, this dish was palatable to me. We all applauded the chef’s talent, asked questions, and got the recipe. I got to talk to several other cancer patients while we ate our communal feast.

I no longer felt alone.

And during the two hours of cooking and eating and asking questions, I felt the warmth, power, salvation, and magic that is Gilda’s Club. That evening cancer did not exist for me. I actually forgot I was ill. Joy and laughter were everywhere, and I fell in love with Gilda’s Club, a club that, it turns out, I was glad I joined after all.

I came to Gilda’s Club regularly for support. I always loved cooking, so I tried not to miss the chefs’ demonstrations, and I participated in writing classes, yoga, and a variety of other fun activities. Doctors would come to this haven to discuss various health/cancer issues. I got educated and met so many people in this welcoming environment.

And this safe space was the place where my emotional healing began.

Gene Wilder, Rest in Peace. You have helped many people through Gilda’s Club.

Tree and light

Have you ever gone to Gilda’s Club?

Does your hometown have a Gilda’s Club nearby?

If applicable, how have you found solace in your diagnosis and beyond?


Go With the Flow

Posted on: August 25th, 2016 by
16

Layout 1

Many people whose lives are affected by cancer or any other serious illness — whether former/current patient or caregiver — often experience depression and anxiety. Psychotherapy, psychotropic medications, EMDR, and guided imagery are just some tools that can be effective at combatting intense emotional stress. These and more options can be discussed with medical professionals.

But another phenomenon effectively decreases or even eliminates stress completely for a period of time. This tool has helped me and many others immensely. It does not require psychotherapy and medications and is easy on the wallet.

It is called Flow.

The concept of flow is the focus of a book by expert Mihaly Csikszentmihalyi called Flow: The Psychology of Optimal Experience. While this post isn’t a book review, I cannot recommend this book more highly. Reading this work was life-changing for me because it made me aware of how certain activities I participate in are highly beneficial to the mind and body.

In a nutshell, flow involves participating in an activity requiring focus and deep concentration where a person invests psychic energy for a period of time. Past wounds and future worries are obliterated; the only thing that exists is the present. Activities can include, but are not limited to, dancing, writing, creating/playing music, knitting, sewing, sketching, painting, and even working at a job that demands great attention.

The more flow one can incorporate in his or her life, according to Csikszentmihalyi, the better the quality of his or her life, self-growth, and exuberant feeling of transcendence: “Without enjoyment life can be endured, and it can even be pleasant. But it can be so only precariously, depending on luck and the cooperation of the external environment. To gain personal control over the quality of experience, however, one needs to learn how to build enjoyment into what happens day in, day out.”

He is spot on.

According to Csikszentmihalyi, flow helps guard “against the entropy that brings disorder to consciousness. It is really a battle for the self; it is a struggle for establishing control over attention.”

Watching television and other passive activities might be enjoyable, argues Csikszentmihalyi, but they don’t create an optimal life experience. Television may bring pleasure, but it does not bring about flow or truly enhances one’s life. And coming from the flow side of things, I couldn’t agree more.

One of the things I often struggle with is focus, thanks to chemobrain. With some tasks, my thoughts are scattered. The activities that give me a sense of flow are exercise, writing, and art. While I love participating in all these activities, art is the one that puts me in the most meditative state and gives me the greatest flow.

I want to discuss my meditative art practice, and you can apply this concept to your own flow activities, if you haven’t already.

Art Therapy

Art takes me to a place where I lose self-consciousness. During the time I draw or paint, my problems and stress “disappear.” All that matters is that particular art project, so much so, that I lose track of space, place, and time. With each brush or pencil stroke, all that matters is the present and the artwork itself.

Losing myself in an art project

Losing myself in an art project

Here’s an example: I start working on an oil painting at 5 p.m. and get so lost in the painting and the resulting reverie, that before I know it it’s 2 a.m., but it feels like just a millisecond has gone by. Each moment I devote to art I am in a meditative state of absolute relaxation. And even after participating in art, I feel more “together” and focused.

This is flow.

And this meditative state helps soothe my mind and body for as long as a few days after participating in the activity.

Unfortunately, for the past year or so, this vital part of my life has been neglected due to a busy life. Balancing work and family isn’t easy, and I haven’t spent enough time with the activity that brings me the most flow — art.

Paints

That’s going to change. From now on, I plan to better integrate art into my life. Truth is, no matter how busy I am, I must make time for art — there’s always some time for art — in order to enhance my life with flow. My mind is now conditioned for art-related reverie: all I have to do is watch my daughter create a painting, and waves of relaxation overcome me.

This is why I understand why adult coloring books are all the rage. These books promote flow. I’ve purchased a few and color with my daughter, and I experience reverie while focusing on the task of coloring.

Flow 3

To me, flow is about functioning and managing stress better. To cope with stress, we need to enhance our own quality of life. If we can create flow in our lives, we can better deal with the stresses life has to offer.

What activities relax you?

Have you ever experienced flow? If so, what activity/activities have prompted this phenomenon?

The first draft of my latest art project

The first draft of my latest art project

Flow 2


Six Mistakes to Avoid as a Patient

Posted on: August 18th, 2016 by
10

Layout 1

I’ve been thinking a lot about medical-related mistakes.

Not mistakes that doctors make, but those that we patients sometimes make.

While being diagnosed and treated for a devastating disease, patients can and do make mistakes. After all, a serious disease puts us in a hurly burly of medical decision-making and is tough medicine indeed. Now add to the mix one’s upbringing, world views, psyche, and peer pressure, among others. With so many factors affecting our decision making, it’s no surprise why our actions might lead to mistakes.

I made my share of mistakes as a cancer patient. After meticulously weighing my options — the way one might weigh objects on a scale — I would make my decision. Many of my choices were spot on. But….

Other times, I made mistakes.

Most of these mishaps could have been avoided, and so I’m sharing them with you. Here, then, are my top six mistakes to avoid when being a patient. I should know: I’ve made all of these mistakes, some repeatedly. These are not listed in any order of importance.

Speak up, don’t tough up, to medical professionals. A patient needs to inform doctors and nurses how he or she is really doing, physically and psychologically. Telling doctors you are okay when you are not is, well, not okay.

This was a huge hurdle for me, over which I tripped and left a trail of mistakes. When a doctor asked me how I was doing, I often said “fine” when I was not fine.

I initially lied to my doctors for a variety of reasons. I found myself trying to please the physicians and not wanting to bother them.

And I was prideful; I was always tough and strong and wanted to impress upon myself and my doctors that I had an iron-clad will and resolve. I come from a hardy family that deals with life’s problems through Spartan steely resolve and independence, stubbornness, and stoicism. A family that picked itself up by its own bootstraps when times got rough.

That’s why I decided to stay quiet about the horrific side effects from chemotherapy and radiation simultaneously. But these treatments were tougher than me. The truth is, doctors cannot read minds, and I got to a point where I admitted to my oncologist that I was ill.

Believe it or not, he was the first person who taught me to speak up to doctors. As I state in my book, when I finally told him I was sick, he told me that if I wasn’t feeling well, he needed to know about it. A nurse concurred by saying “If you need medication to alleviate the symptoms [of treatment], then you have to help yourself.”

Once I opened up to doctors how I was feeling physically, then I started telling them how I was feeling emotionally. And it led to a close relationship with my physicians that has lasted to this day. I remember telling my oncologist that I was stupid — when saddled with chemo-induced cognitive dysfunction, also known as chemobrain.

He held my hand and told me I was intelligent. This action meant the world to me and fostered a higher level of patient-doctor trust.

Reach out to others. I was also prideful in this arena. Other than regularly confiding in my brother and aunt, I initially did not reach out for emotional support. With their encouragement, I found myself walking through the doors of Gilda’s Club and calling the American Cancer Society. And these organizations helped me immensely, making me feel less alone.

Don’t rely solely on the Internet. I found that searching on the Internet via Dr. Google was a big mistake and often, after reading about worst-case scenarios, it’s no wonder why I was hysterical as I turned off the computer. I’m not saying patients shouldn’t research and get informed about their condition(s), but the Internet is a double-edged sword — an amalgamation of good information and deceptive information.

Don’t rush to make a treatment decision. While you don’t want to wait a long time to begin an action, you might have more time to think on a treatment plan than you believe. Oncologist Dr. Death tried to rush me into treatment options that, as it turned out, were wrong for me. Rushing into his treatment plan would have been detrimental for me.

Don’t compare your treatment to someone else’s. Truth is, illness is like a fingerprint, and a treatment that is excellent for one person might not be great for another.

Stay away from unsupportive support groups. Many support groups are just fine, but others can be downright harmful. At first, my support group seemed excellent, but as time passed, the individuals in the group did me more harm than good.

When it comes to unsupportive support groups, be willing to pull the plug.

These are just some of the mistakes patients should avoid, if possible to navigate the road ahead. I’ve just tapped the surface of the common mistakes patients make. Now I’d like to hear from you.

The Road Ahead

Is there anything that you would add to this list?

What is a mistake or mistakes that you made as a patient?