Aging Ungracefully

Posted on: August 27th, 2015 by
15

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Pre-cancer, I was sturdy, strong, resilient. I reached far into the sky, living the myth that mortality was far, far away, especially since I took excellent care of my body. Like many young people, I believed I wouldn’t have to confront death for a long time.

I had incredible amounts of energy and an amazing memory, and I was in excellent physical shape, being an avid runner and walker.

Until cancer made me realize long-term health was a pipe dream.

Understandably, I’ve never been the same since diagnosis. After all, who is?

During treatment I felt exceedingly old, lacking energy, suffering from extreme fatigue and major cognitive impairment. Medical staff told me that I’d bounce back after treatment. But a funny thing happened on the way to post-cancer: I didn’t bounce back well.

The body and the mind never forget a hurt. And cancer and its treatments are a major hurt.

The multiple surgeries have taken their toll on my physical and mental health. I have body image issues. I’ve had bone fractures, part of the collateral damage of treatments.

And I still have chemobrain — 14 years after chemo ended. My rewired brain has gone haywire.

I struggle with short-term memory. In desperation to brush back the chemo fog, I desperately play Lumosity brain games, but I get frustrated easily. Reading is more difficult, as my attention span has diminished. But I keep reading; I refuse to give up on literature, which I love, and I refuse to completely give in to chemobrain.

But, let’s face it, since cancer, I feel older than I am.

I have felt old since the very first chemotherapy treatment and since radiation.

And to add insult to injury, some medical professionals use diversion tactics to deny that cancer treatments have aged me.

Like the specialist who told me that a stress fracture was because my body wasn’t sufficiently conditioned, rather than the truth about my compromised bone health. Or the physician who wondered if other fractures were due to me accidentally sustaining a recent injury rather than wonder about my poor bone density.

Or the doctor who flippantly told me that my short-term memory problems were not due to chemobrain at all, but due to the natural process of aging.

Or the doctor who blamed my brain problems on aging rather than chemobrain. How could this be, when I noticed a decline in cognitive abilities after my very first chemo treatment? My brain power didn’t coincidentally diminish on its own as soon as chemo was administered.

Or the physician who told me the effects of chemobrain were short-term and I shouldn’t have symptoms of cognitive impairment more than a year after treatment. Well, I know my brain fog is permanent.

Or the doctor who believes my medications are the short-term-memory culprits.

Some physicians simply dismiss my true concerns and feelings about cancer treatments’ collateral toll on the body, mind, and spirit.

If I weren’t so level-headed, I might think there is a medical conspiracy to keep mum about treatment’s looooong-lasting effects.

I’m not trying to be ungrateful here. I’m grateful to be alive, NED (no evidence of disease), and to be able to swim and walk. Not everyone is this lucky. I love my doctors and medical staff. But sometimes I just feel dismissed.

Patients house too many truths to be dismissed.

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Have you ever felt dismissed by medical professionals?

Do you feel cancer and/or its treatments have aged you?


No, Cancer is Not a Journey

Posted on: August 13th, 2015 by
15

I dislike many platitudes when it comes to cancer. The general healthy public likes to give a positive spin to cancer — especially breast cancer, of course. In fact, so many in our society consider breast cancer the cute, benign sort of cancer, even though it kills and maims.

Well-meaning people have tritely referred to my breast cancer experience as a “journey,” as if there’s a beautiful road to a beautiful place of self-revelation.

The Road Ahead

I hate this platitude.

My life’s path hasn’t become more meaningful since cancer sunk its fangs into me. I don’t have a higher purpose or calling. Cancer did not set me on an important journey toward self-discovery and self-revelation.

The only journey cancer took me was on a road paved to hell. And therein lies my self-revelation.

For example, on biopsy day, my surgeon told me that the diagnostic mammogram showed that the mass in question was highly indicative of cancer. I literally felt the examination room table I was on drop down, down, down — and I was falling into an abyss of unchartered terror.

That was my initiation into the world of the cancer journey.

But that was only the beginning. Chemotherapy and radiation and an aromatase inhibitor wreaked havoc on my body. At a young age, I did have an epiphany of sorts: I learned what it was like to feel old, sick, and worn down.

Not exactly a feel-good breast cancer journey.

And cancer wasn’t done with me after treatment ended. I am exceedingly lucky I’m not metastatic, and each day I realize so many people are still struggling with breast cancer and its treatments. Many will die of the disease. Thus far, my life was spared.

But my mind was not spared. In fact, it bled out. The journey to PTSD is a one-way ticket to a horrific place filled with triggers and land mines. Any misstep is precarious.

I’m lucky to be NED (no evidence of disease) thus far.

But in a sense, I am still a lifer.

PTSD has forever has changed my brain chemistry; trauma haunts my mind, inhabits my body, and is here to stay.

Yeah, some journey. Right.

I spend my days working harder than I should have to in order to make life’s moments meaningful and stretching these moments into meaningful hours and days.

Some people tell me that I should be over “it” and see my “cancer journey” as a well-paved road that goes from point A to point B. But truth is, that road is not linear and it’s fraught with potholes.

The journey metaphor is harmful to people who have/have had cancer because it puts pressure on us to feel that cancer somehow impacted our lives in a meaningful, positive way. This is not always the case. That being said, however, my cancer take-aways have been to not take my health for granted and to realize that I am luckier than others.

And that has to be enough.

What are the platitudes you dislike the most and why?

What are your cancer struggles? I want to hear about them.

For a post on other problematic platitudes, click here.


Watermelon for a Cure

Posted on: July 29th, 2015 by
15

When it comes to cause marketing, I thought I’d seen it all — until I walked into the grocery store the other day. As soon as I walked in, I saw seedless watermelons sporting large pink-ribbon stickers. And to add insult to pink injury, right next to the ribbon the sticker said, “A Sweet Way to Stay Healthy.”

This cutesy message strongly implies that watermelon somehow protects people from breast cancer. This campaign is called MelonUp!, and its website boasts the cancer-preventing benefits of eating seedless watermelon.

The website says, “Lycopene is a red pigment that gives watermelon its color. It’s packed with antioxidants, which are known to prevent cancer.” Oh, and if this misinformation isn’t enough, the website says, “Through nutrition education on the health benefits of watermelon, combined with donations to breast cancer organizations, we endeavor to help the estimated 1 in 8 women who will be affected by this cancer, and to never give up the fight for a cure. You can help support this worthy cause when you purchase MelonUp! Pink Ribbon watermelons. Every juicy bite of a MelonUp! Pink Ribbon melon helps to fund critical breast cancer research.”

Puh-lease. This rhetoric, which has been seen time and time again, is tiresome. And that’s not all: people can download a ridiculous MelonUp! Pink Ribbon Watermelon App for $1 where one can play a fun seed-spitting game and where all proceeds will supposedly be donated to cancer research. And the irony of the game wasn’t lost on me since MelonUp is touting its SEEDLESS watermelons.

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I love watermelon. In fact, it’s my favorite fruit. I grew up eating lots — and I mean an enormous amount — of watermelon and have continued eating it. And I got breast cancer anyway. I still eat a lot of this fruit and enjoy it immensely. While watermelon is a healthy food, I have no illusions that it will keep me healthy.

Here’s the e-mail I sent to melonup@robinsonfresh.com: The letter is short and melon-sweet.

To Whom It May Concern:

I love eating seedless watermelon. You are certainly right about it being a nutritious, delicious food. I’ve always eaten lots of watermelon — with and without seeds — and relish the fruit.

However, I don’t relish the inaccurate message you are sending customers — the one about watermelon’s ability to keep people healthy and cancer-free. Despite all the watermelon I’ve eaten in my life, I got breast cancer anyway. Cancer causes suffering and death, and watermelon cannot prevent cancer.

By implying that watermelon prevents cancer, you are misinforming the public and doing them a disservice.

While I would like the MelonUp! campaign to be dismantled, I realize this request is unrealistic, given your organization’s penchant for cause marketing. However, I implore you to change the wording on your website. You could start by touting the value of watermelon without linking it to cancer prevention.

I appreciate your taking the time to read this e-mail and look forward to hearing from you soon.

Beth Gainer

Have you seen pink ribbon products being sold during summer? If so, what have you seen?


Dinosaurs

Posted on: July 16th, 2015 by
14

“Oooh, that’s one creepy-looking dinosaur!” I told my wide-eyed-but-ready-for-bedtime daughter.
“Then read about it, Mommy!” she laughed, pointing at the ferocious dinosaur in one of her favorite books.
“Honey, I’m so glad they are extinct.”
“Otherwise, they would chase us and eat us?”
“Yes, I’m sure.”
She yawned. “I’m glad they are extinct, too,” as she rolled over to sleep.

It’s now midnight, and I’ve been trying to sleep for hours, but cannot rest an eyelid.

A dinosaur is trying to devour me.

***
I’m having a bad night. One consumed by fear and anguish. I wish it were a good night, one where the medications ease my anxieties and put me in a restful sleep.

But tonight isn’t that night.

The last of my cancer treatments was a long time ago in cancer years, yet here I find myself curled in a fetal position, crying about breast cancer.

Alone.

With. Too. Much. Time. To. Think.

I ruminate endlessly about how I needed not to have heard the words, “It’s cancer.”

My loved ones think I should be over “it” by now. A friend recently told me that where I am now is so much better than where I was a number of years ago when I was newly diagnosed and undergoing treatments.

In a sense he’s right. I am far better off now. I have a beautiful, joyful life for which I’m thankful every day. I really lucked out so far in this game of cancer roulette.

But the PTSD that keeps me up some nights has made me supremely unlucky, too. It is part of the collateral damage that ensures I will never be done with breast cancer. NEVER. No matter how long I long for the carefree days when I was untouched by ill health, I will never be carefree again. It’s not just fear of recurrence and paranoia about aches and pains that keep me up at night, but trying, trying, trying to cope with trauma.

I have repeatedly told my doctors about my PTSD, and they are understanding — but unless they themselves have faced a life-threatening disease — I know they do not understand. They have helped me physically; their interest lies in the human body, not the mind. Of course, the mind-body connection is powerful; I just wish they understood that.

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Although mental health professionals have my back, I still wholeheartedly wish for my other doctors to understand what I’m going through.

One mental health professional asks me each time I see him how my sleep is. “Just fine,” I lie. I’m afraid I’ll be put on medications that will make me a zombie. This is unacceptable to me. So, here I lie tonight unable to sleep, constantly looking over my shoulder and grieving.

Yesterday, my daughter made a discovery, “Mom, this breast is smaller than the other one!” Though I was weeping internally, I calmly said that I know and once again reiterated that it’s because mommy had a boo-boo there, and it was removed, so my right breast is smaller. “And what about that?” She was pointing to a remaining deformity on my right breast due to three lumpectomies, radiation, and mastectomy with reconstruction. I then told her that it was because the doctor had to treat it to make the boo-boo go away.

Then, thankfully, she dropped the subject, leaving me relieved but shaken. Sooner than later, she will put the pieces together, and I will help her, as I help her put dinosaur puzzles together.

I have a great life and wouldn’t trade it for the world. I’m lucky I am spending wonderful amounts of time with my daughter. We have activity-packed days, which help keep the demons at bay.

Come to think of it, I think I could live with the dinosaurs. I wish cancer were extinct instead.

Feel free to share how cancer has affected you emotionally and/or physically.

Do you have “dinosaurs” in your life?

I am eager to read about your experiences.


15 Random Facts About Me

Posted on: July 9th, 2015 by
17

I just read Nancy Stordahl’s latest post titled 15 Random Facts & A Blogging Challenge Too!, where she shared 15 facts about herself. And I thought, what a great idea, so that’s what my post this week is about.

And, as Nancy has done, I’m putting a challenge out there for others in the blogosphere to blog on 15 (or less or more) facts about yourselves.

Here are 15 random facts to know about me:

1. I’m from the Bronx, NY, home of the New York Yankees. I am now living in the Midwest, but I miss my family who have remained in New York. I visit when I can. I also miss NY food, particularly pizza and bagels.
2. From the age of 12 to 18, I wanted to be a veterinarian. I’ve always been crazy-in-love with animals. In fact, I used to rescue cats from trees on my way to and from school. During my high school years, I volunteered at an animal hospital. Nothing says humility like working in a kennel or passing out when watching surgery. I’ve done both.
3. My favorite field trip took place when I was in high school. Our biology class went to Sloan-Kettering to learn about cancer cells (ironic, huh?). I did get to work an electron microscope, which was beyond cool and a memory I will always treasure.
4. I went to Michigan State University because of its veterinary program.
5. I changed my major to English.
6. I teach English literature and writing at a local university. Being a teacher is fulfilling, and I enjoy helping others.
7. I love writing. So. Much.
8. My favorite hobby is art — in particular, oil painting and drawing. These are completely relaxing activities for me. One day I’d like to go on an artist’s retreat in Italy, France, and/or Ireland.
9. I’m more than halfway done reading War and Peace. I’ve since lost track of many a few characters and it’s taking me forever to get through, but I’m determined to finish it.
10. My daughter has gotten me hooked — literally and figuratively — on the Rainbow Loom, where you make jewelry out of rubber bands, and there’s, like, a zillion different patterns. Luckily YouTube has many instructional videos. She and I have recently mastered the fishtail pattern! This is why War and Peace is taking me so long.
11. I wear a lucky pendant I never take off. It has my daughter’s Chinese name, which literally translates to something like “highest luck.”
12. I am terrible with plants and admire those with a green thumb. My mom is a great gardener, but plants/gardens under my care don’t fare well.
13. My favorite instrument is the violin. I don’t play it, but I sure enjoy listening. I love strings in general, but the violin soothes me like no other.
14. I have a wide range of musical tastes — from classical to folk to rock — and like most people, I am loyal to my favorite artists who speak to my heart. When people critique my musical tastes, I get exceedingly annoyed and take it quite personally.
15. I began blogging for two reasons: because my efforts to have a newspaper column on patient empowerment fell through. I also wanted to write a book on this topic and felt more comfortable creating a book in small chunks. I’m trying to get the completed manuscript published. I’d also like to write more about topics other than cancer. But, for now, I still have a lot to say on this subject. And I’m proud to be a member of a wonderful blogging community of writers and readers.

Well, there you have it. The 15 random facts about me. I had fun writing this, and I hope to write more non-cancer-related posts in the future.

What are some random facts about yourself?

I would love to hear about you.

War and Peace

My lucky pendant

My lucky pendant


Seeking Independence From Ignorance

Posted on: July 2nd, 2015 by
9

Today my 7-year-old daughter is participating in her day camp’s Fourth of July parade. The children will be marching around waving American flags, as they do every year. Ari looks forward to this parade, the fireworks on the Fourth, and she enjoys listening to how the United States gained its independence.

Throughout the year, we have discussed how this country is a true melting pot of people — many from other countries. “Like me!” she says smiling, referring to China, her country of birth. “And like grandpa,” I add, acknowledging that my dad is from Poland. (Of course, she’s too young to understand that he escaped the jaws of Nazism.)

Part of the narrative woven into our family life is how wonderful China’s people are. And how the United States tolerates people of all backgrounds and beliefs. We root for China and the United States during the Olympics. I expose her to Chinese-related customs and holidays, while celebrating Jewish holidays. We are a multicultural family who embraces tolerance.

And we are also a conspicuous family. But in America, the land of the free, tolerance of conspicuous families sometimes falls short. A Caucasian mother with an Asian child is not always well-received. In fact, we have encountered more than our share of ignorant, unsavory comments from people of many nationalities and countries.

And what’s worse, most of them are said right in front of my daughter. I give appropriate responses because how I answer these questions will affect how Ari perceives herself. I must quell my impulse to tell these ignoramuses where to go. Sometimes I educate, but much of the time — depending on how shocking the comment is — we walk away. Ironically, we live in a diverse area.

So to those sometimes-well-meaning Americans, let me set the record straight on this Independence Day holiday:

* Yes, my daughter speaks English. Quite well, thank you very much.

* To the Chinese-food delivery guy who pointed at Ari and asked, “Wow, you’ve got a real Chinese girl living here?” Yes. She’s real. And her favorite food is Chinese food. Imagine that.

* To the Americans who call my daughter a “China doll,” knock it off. Once again, she’s a real person. For her dance recital, she eagerly wore some make-up, but then looked at herself in the mirror and said, “I don’t look real; I look like a China doll.” To stave off any more pain, I told her that she was real, not a doll.

* I’m not an American mom with a Chinese daughter. My daughter is also American.

* How much did I pay for her? Um. None of your damn business. I’ve been asked this in front of Ari many times, as well as “Did you buy her?.” Each time I’m asked these questions, I wish I could say what I really feel like saying (not appropriate in front of a child). But here’s the answer my pre-adoption classes trained me well for: “As much as it costs to give birth.” That answer shuts them up.

* No, her eyes are not too small. They are perfect.

* A woman stopped us in a store and kept repeating ad nauseum how lucky Ari is to be in the United States and in an American family. When I told the woman that I was so lucky to have my daughter, she then said “In China, they hate girls. They throw them in the garbage.” Ari and I quickly walked away. Later, we had an age-appropriate talk about China’s then-one-child policy.

* Stop calling Ari a lottery baby because she was adopted in the United States. She doesn’t play the lottery, she’s not a baby, and she isn’t completely lucky. Adoption is also a story of loss — the loss of a birth family and her native land. I know she experiences some grief, as do I. I want so much for her to know her birth family, but that will never happen. We want to go to China in the future, though.

I’d like to think these comments don’t faze Ari, but about six months ago, she told me, “This isn’t working out for me. Being an American.” I told her that there’s prejudice and hardship everywhere, and to keep an open mind because many people in our country eagerly embrace differences in others.

Truth is, my open-minded daughter is giving the United States another chance. This July 4, she will be celebrating with her best friend in red-white-and-blue style. She’s embracing America. I only hope other Americans follow suit.

How have you and/or someone you care about deal with unsavory comments from others?

If you are in a conspicuous family, how do you and/or your children fare in society?

If you are from the United States, how are you celebrating Independence Day?

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Fireworks


Bowled Over

Posted on: June 26th, 2015 by
6

When I was a teenager and young adult, I really took to bowling. It started in high school, when a gym teacher taught us how to bowl with the proper mechanics. I bowled every week with friends and was pretty decent at the sport. Don’t get me wrong: I wasn’t great, not even close. But I had a knack for it — and even more important, a love for it.

As I got a bit older, I took bowling for granted. It was always there for me to do, but my bowling outings were much more sporadic. Still, I loved the sport, knowing I could bowl whenever I wanted to.

Then cancer shit all over me. And the last thing on my mind was bowling. Instead, I had to focus on the necessities: staying alive and, eventually, keeping lymphedema at bay. The cancer had been in my right breast, so lymph nodes were removed on my right side. I understood that my right arm had limits, which was unfortunate, since I’m very right-handed.

Shortly after chemotherapy and radiation treatments ended, I overused my right arm, simply by opening doors and repeatedly throwing my cat her ball. I had an alarming lymphedema flare-up. My hand swelled up beyond imagination. I was in pain, and I had physical therapy, learning techniques to help reduce the swelling and pain.

It wasn’t until I was invited to a bowling party that I realized I could no longer bowl. I declined.

After all, what good was going to a bowling party when all you could do was sit out on the sidelines? I just accepted it without any remorse. I don’t know why it didn’t bother me so much at the time. Maybe it was because I was so grateful to be alive, that I felt sacrificing bowling was a meager price to pay in the cancer world.

Nowadays, Arielle and her close friend occasionally have bowling playdates. The friend’s parents and I have become friends, and they know about my breast cancer history.

So I’ve taken Arielle bowling and watched the kids and the parents bowl, while I was an observer. I still had fun talking with the parents in between their bowling turns and helping Arielle, but deep down inside, I wanted to be participating.

Fast forward to yesterday, my daughter’s birthday. A few days before we discussed what she would like to do on her birthday. She wanted to go bowling with me. I told her I would go but only watch her bowl, but she insisted that she wanted me to bowl, too. She wanted us to bowl together. I nervously agreed, telling her I would bowl left-handed. (I’ve thought of bowling left-handed before, but I really can’t do much left-handed.)

So yesterday, I told the bowling alley personnel to keep the child bumpers up even for my turn. I didn’t want to see gutter ball after gutter ball from me. Yet what happened next was astounding. I bowled fairly well, considering I was using my left hand to bowl for the very first time and that I hadn’t bowled in a very long time. I would’ve gotten a couple of gutter balls, but despite my awkward stance and position before releasing the ball, I got two spares in the game. I even offered Arielle advice on how to improve her game.

I was thrilled. I never, ever anticipated that I could bowl left-handed. And in that sense, all these years, I sold myself short.

Arielle and I will be going bowling again in the near future. We can’t wait. She now has a mom who can bowl, and I have a lot of bowling catch-up to do.

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Have you ever overcome what you once thought were your limitations?

Have you had lymphedema?

What do you do to reduce your lymphedema risk?

I would love to hear about your experiences.


My Oncology Nurse

Posted on: June 19th, 2015 by
8

“I’m quitting chemo,” I said, halfway through my treatments.
“Are you looking for someone to tell you not to quit?”
“No, I’m done.”
“Well, I’m telling you that you are not quitting chemo.”

***
This phone conversation took place between me and my oncology nurse Ann a day after I returned from the hospital. I had been rushed to the emergency room because of a high fever and constant vomiting.

I felt like shit.

Frightened, I decided to stop chemotherapy and just take my chances. I wanted to stop the treatments, for I believed they would kill me.

Ann had found out about my having been in ER, so she called me right away to see how I was. It turned out that she also knocked me into compliance and possibly saved my life. Even when I was ready to throw in the towel and give up, she refused to give up on me.

We hear so much about doctors saving our lives, and that is true. But the unsung heroes are often the oncology nurses.

***

Ann was a light during the darkest time of my life.

This special nurse treated me with the utmost respect and kindness.

And she was human. She admitted to me she was dyslexic, which made her pay careful attention to what medications she was administering. At first, her dyslexia made me nervous, as I was scared I would get the wrong chemicals. So I kindly asked her each time what chemical was about to go into my veins. She knew what I was doing, but she didn’t seem to mind. Each time she would patiently tell me what she was administering.

She didn’t just administer, but she ministered to my spirit.

Oncology nurses are incredibly busy — running from patient to patient and having administrative duties.

So many patients were in the chemo area with their families and friends, but I went to my chemo appointments alone. I was afraid, like so many patients, but I was also alone and hurt. The loneliness was hard to bear, especially watching people receiving chemo while their family members loyally sat by their side.

It seemed I was the only one who was alone during my half-day treatments. Getting chemo alone gives one a lot of time to think. And I would often think of life and of death. If I was lucky, I shared a chemo room with someone who would talk with me or whose family member(s) would get me something to drink.

But I usually didn’t talk to anyone.

I was scared and alone.

Ann saw this, so she spent hours with me, talking about her kids and fun topics. Sure, she had to leave occasionally to tend to other patients, but she always returned with, “So, as I was sayin’…” She got me to smile, then laugh. She would crack jokes and talk about her daily trials and tribulations.

Hearing about her life took my mind off how miserable mine was.

She always hugged me and made me feel loved, special, and important — at a time when I usually felt otherwise. I loved seeing Ann, and she was my anchor throughout chemotherapy.

One time, Ann was on vacation, so I had a different oncology nurse, who was super nice to me as well. This substitute nurse gave me a card from Ann. In the blank card was a note about how special I was and how much Ann missed me. It brought me to tears, but this time, they weren’t tears of sorrow and anguish, but of happiness.

During one of my chemotherapy treatments, I shared a room with a woman who had quit chemo halfway through her treatment. Unfortunately, she had a recurrence and was back. This made me so sad.

“I’m quitting chemo.”
“Are you looking for someone to tell you not to quit?”
“No, I’m done.”
“Well, I’m telling you that you are not quitting chemo.”

And I didn’t quit.

I’m so grateful to Ann for keeping me on my treatment course and helping me do everything possible to keep cancer away. She forever has a special place in my heart for making sure I had a special place in hers.

Candle

Did you have a special nurse or encounter with a nurse? I would love to hear about your experience(s).


The New Abnormal

Posted on: June 12th, 2015 by
22

Upon hearing that I am cancer-free thus far, people flippantly ask me if I’m now used to the “new me” or the “new normal.” I’m sure they mean well, but I really don’t know what they mean. They are tossing about meaningless phrases. I don’t like being typecast into nonsensical words like the “new me” and “new normal” because — even if cancer is not involved — a “normal” life does not exist.

Life is orchestrated chaos: if we are lucky, we get to control some of our circumstances. If we are lucky, we get to meet some goals and achieve a few dreams.

However, we shouldn’t get too complacent; life has a way of screwing it all up.

Throw cancer into the mix, for example. Post-cancer life, frankly, is not a new normal.

In fact, my cancer survivorship is the new abnormal.

I’m NED (no evidence of disease) thus far, and I am incredibly grateful for all the bountiful gifts life has to offer. Every day I’m reminded of how lucky I am: I appreciate my days of physical and mental health. I’m able to walk and swim, appreciate nature, read, write, and create art. I have a terrific, supportive network of friends and a wonderful daughter to share my life with.

But I will not forgive cancer for changing my orchestrated chaos to the new abnormal.

It was abnormal, for instance, to have chemicals pumped into my body. And to have chemotherapy-induced menopause. And to have my breasts amputated and replaced by make-believe breasts. And to have osteopenia at a young age, as well as bone fractures due to all the treatments.

And for me to have PTSD. And for insurance companies to cover PTSD treatments for military personnel, but not cover them for someone who has experienced something just as frightening as going to war and facing death. (Pardon the war analogy, but in this case it fits.)

As I write this, it is 12:30 a.m. It’s not normal to be up so late panicking because it is nighttime, and the darkness reminds me of death and cancer demons and ICU. That’s when my PTSD is at its worst: at night. Why, oh why, aren’t the anti-anxiety medications kicking in yet? I take them to minimize the flashbacks and anxiety related to my cancer experience.

Frankly, cancer has flattened me good.

In all the brochures and pamphlets I read as a newly diagnosed patient, there was no information on how to survive after cancer — if one was lucky enough to be finished with cancer treatment. Why is this?

When I finished radiation, I got a certificate of “graduation” and applause and was sent on my way. When I finished chemotherapy, my chemo nurse celebrated, as did my family and friends. Everybody was happy I was “done” with cancer and would return to normal.

But cancer wasn’t “done” with me. I would never be the same again. After I was given the all-clear to get on with the rest of my life, I found myself gasping and struggling and in anguish. I remember my first post-treatment commute to work, the beginning of my introduction to civilian life. I looked at my reflection in the train car window, and all I could think of were, “What the hell just happened to me?” and “Who the hell am I?”

This is the world of the new abnormal.

My family loves me; they don’t want to see me suffer. Some of them know I have PTSD, but they don’t bring it up. You know, the mental health stigma. When I was getting treatment for cancer, they did want to know how I was faring. But they don’t ask how I am faring now. So I’ve since stopped talking about it with them.

I get it: They need to believe that I’m over cancer. But I will never be over it.

I’m happy to say that I am successfully navigating survivorship in the new abnormal, but some days I just lack the energy to cope as well as I can. Survivorship takes a lot of raw mental, emotional, and physical energy. Some days you have it, and some days you don’t.

All I can do is take great care of myself and my child. And pick up the pieces, even though they can’t be put back together.

Clouds

How have you dealt with survivorship physically and/or emotionally?

Did a medical/social service professional discuss a survivorship plan?

These questions also apply to those with metastatic disease.

Please share your experiences. I would love to hear about them.


School Milestones

Posted on: June 4th, 2015 by
10

As today is Ari’s last day of school, it is only fitting that today I reflect upon this extraordinary school year.

As my readers know, last year Ari did not thrive in an accelerated private school, so this year we switched to the local public school. Great things have happened to Ari this year, and I am grateful.

Ari immediately loved her first grade teacher. I remember the day I walked away from the school, only to find myself in tears because I worried about Ari’s first day at a new school with a new teacher. When I met Ari at the end of that first school day and asked her how it went, she gave a thumbs up. From that point on, things went smoothly all year.

Her first grade teacher was amazing. Over this academic year, we’ve e-mailed each other about Ari’s academic progress and spoke on the phone, as well as in person. When Ari stressed out about timed math tests, her teacher and I worked together as a team to alleviate my daughter’s stress. And it worked! A sensitive girl, Ari also had confidence problems with reading at a certain level, so her teacher and I worked hard to ensure that my daughter was comfortable and succeeded.

In fact, Ari succeeded in ways I couldn’t envision on the first day of school.

Ari the Artist

During the year, Ari’s artwork was selected, along with the artwork of other students all over the district, to be on display at a local museum. A special event at the museum’s gallery celebrated Ari and the other artists. As we headed to the museum, I told Ari how proud I was of her. She said, “But mom, I don’t draw and paint as well as you.” And I responded, “My artwork was never in a museum, and you are only six and yours has already made it into a museum.” She smiled, quite proud of outdoing her mama.

And we had great fun at the gallery-opening celebration, socializing with her fellow artists and their families. And there was an awesome cake and other yummy treats!

Art Gallery

Ari learned so many important life lessons this year. But if I had to choose the most important lesson she learned, it would be to try one’s hardest and to seize any available opportunities.

A Young Author’s Contest was announced about a month after the gallery visit, and there was a call for fiction and non-fiction stories. Each grade in each participating school would have a winner. Winning entries would be bound in a book that would be available in the schools’ libraries.

Arielle had no intention of entering the contest, as she perceived writing as hard work to be avoided whenever possible. I cajoled and encouraged her to enter the contest anyway, telling her, “If you don’t enter, you definitely won’t win. If you enter, you might win, but even if you don’t, at least you tried your best.” She still resisted, but with my continuous support and persuasion (OK, I was a bit of a pest), she finally relented.

She chose to write about her pet goldfish. She wrote it on attractive paper and did the illustrations for it. And then we forgot about the contest.

Until the unthinkable-to-Ari happened: She won the contest for her grade level.

As the principal announced the winners, Ari was shocked to receive applause by her teacher and peers. When I asked her what lesson she learned from this experience, Ari said, “You never know what you can do until you try your hardest. You were right, mom.” (I realize I won’t hear the words “You were right, mom” very often, so I savored this, too.)

She was bussed to a special event honoring the writers, where she learned more about writing and left with a plethora of information and writing exercises, as well as a list of more writing contests for kids. I told my daughter, “Why not enter these contests? Whether or not you win, it’s a great experience.” And Ari nodded an emphatic “yes.”

Ari having her picture taken with her winning story

Ari having her picture taken with her winning story

Overall, this year was a major milestone for Ari. It was heart-warming to be a part of a school that made learning fun, supported its students, and doled out positive reinforcement, while teaching students socialization skills. Last year at this time, she left the private school with her self-confidence barely intact.

This year in the new school she did more than just survive.

She thrived.

Cake

Do you have any great school stories to share? I would love to hear yours.