Birthday Suit

Posted on: August 17th, 2017 by
10

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Some time ago, my daughter asked me what it meant “to be in one’s birthday suit.” I explained that this term essentially meant being naked, wearing what one is born with — nothing. Since then, we’ve occasionally joked and laughed that it would be silly to have a cute dress as a birthday suit because everyone is born completely naked.

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I grew up in a family that wrapped nakedness with shame. My parents were secretive about nudity, and to this day, I’ve never seen my mom without clothes. Perhaps because of this upbringing, or maybe due to other reasons, I’ve always been modest about my body.

But…I’ve also been so proud of my body, particularly my breasts and — I know this sounds silly — but my belly button. I believed my pre-cancer body was beautiful. I wasn’t vain about it or flaunted it, yet I knew my breasts and belly button were just perfect. I loved my birthday suit.

But….then came the shitfest known as cancer.

I had three lumpectomies on my right breast: the initial lumpectomy, a second one to excise the dirty margins — not to mention damage caused by radiation — and a final lumpectomy five years later when I had a medical scare of possible recurrence in that same breast. (Luckily it turned out to be scar tissue.) My breast was horribly deformed, and my body image went down the toilet.

The prophylactic bilateral mastectomy came next, and I had to adjust to breasts, each with a different cup size, and that looked nothing like the breasts I was born to have. The tattooed nipples were irksome to me, as they weren’t the lovely nipples I once had. Body image issues ran amuck. You can read more about them here and here.

But….just as important, my belly button was recreated as a distorted hole. I know it sounds silly to fuss over this part of the human anatomy, as a belly button is seemingly unimportant, but I am sometimes grief-stricken about it and wince each time I see the fake, plastic-surgeon-created belly button. Now, don’t get me wrong; I don’t give it much thought most days. But the belly button and huge hip-to-hip scar underneath it are daily reminders of cancer.

My lack of belly button self-esteem was revisited two weeks ago, when I signed my daughter up for ballet. And, just as luck would have it, the director of the dance studio told us that we were in for a surprise because we were just in time to watch a rehearsal performance in an adjacent dance studio. So thinking it would be great fun, we agreed to watch these dancers rehearse their number.

But….did I tell you that the dance performance we watched was belly dancing? No shit.

My daughter and I loved it and got caught up in the rhythm of the music and the sounds of the ornate bells and jingles on the hips of all the dancers, who varied in age and body types. All these women swaying to and fro seemed to be confident in their bodies. And in case you’re wondering, I did indeed assess their belly buttons. The verdict: I had belly envy.

I don’t mean to belly ache about this, but the emotional pain is real. Over 10 years ago, my body had been altered to the point where I had no longer recognized myself.

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Unlike my parents, I teach Ari that our bodies are nothing to be ashamed of. And, over the years, I’ve grown to be mostly at peace with my re-created torso.

But ….just this week, Ari saw me step out of the shower and dry myself.

“Mom, you are not in your birthday suit.”
“Of course I am!” I said.
“No, you’re not,” she said matter of factly. “Your body isn’t the one you were born with.”
“You’re right,” I said, trying to hide my agony. “I’m not exactly in my birthday suit.”

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Believe it or not, I’m thinking of taking belly dancing. It really looked like fun and not too tough. I like the sound of the music, as well as the jingles on everyone’s hips. I think it might be therapeutic because through belly dancing, I could gain confidence in my body.

And maybe it won’t matter that underneath the jingles and scarfs that I’m not in my birthday suit.

But

Do you have body-image issues since surgery? How has your experience been?

Do you think I should take belly dancing? Have you belly danced?


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Posted in Cancer | 10 Comments »

Up to this Summer’s Blogging Challenge

Posted on: August 11th, 2017 by
4

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This week my friend Nancy Stordahl, who blogs at Nancy’s Point, announced a new summer blogging challenge, where bloggers answer 10 random cancer-related questions. This challenge is a great idea, so I decided to participate.

As is the case in Nancy’s challenge blog, feel free to provide comments addressing any of these random questions, or even a question not on this list. Or, if you participated in the blogging challenge, provide a link below to your blog.

After all, sharing our stories makes us a special community.

So without further ado, here are my answers to the questions Nancy provided.

1. Share anything you want about your cancer diagnosis (or your loved one’s). Share your age, cancer type, stage, when you were diagnosed, family history (if any), your reaction, how you learned the news, or whatever you’re comfortable sharing.

I found my own breast cancer in 2001, only a short time after a mammogram missed it. I noticed an abnormality during a monthly breast self exam, which I always did religiously. Although I felt no lumps, I saw a very slight dimple at the top of my right breast. I urged my gynecologist to take another look, and he said that it was probably nothing, but I should get a diagnostic mammogram just to be on the safe side. His words reassured me, but deep down inside, my gut told me it was cancer. The diagnostic mammogram revealed an abnormality, which my surgeon confirmed with biopsy results. Cancer. Being told I had cancer was the shittiest day of my life.

2. What is the most outrageous thing someone has said to you about your (or your loved one’s) cancer?

I’ve had too many outrageous comments said to me. Probably besides the annoying “You look great,” and “You can beat this thing,” the most awful thing said to me was by the HR manager of my then-company. She said, “Since you’ve gotten sick, our insurance premiums have gone up.”

3. What is your biggest cancer pet peeve? I know it’s hard to choose, as there are many to pick from, right? But what irks you the most?

Yes, there is a plethora to pick from. Out of all of those pet peeves, the one that irks me the most is saying, “There’s a reason for everything” in relation to my cancer. As if some sort of divine providence had chosen me as some kind of ambassador to self-improvement after cancer. Like I was the special one chosen to have cancer so I could become a better person. That comment makes me call bullshit.

4. What is something you want others to know specifically about breast cancer?

That breast cancer is a serious disease that kills massive numbers of men and women each year. Breast cancer is not an opportunity to party it up. There is no cure. Yes, breast cancer is marketed a lot, but cause marketing does not donate much, if any, to real research. We need to find a cure.

5. If applicable, do you worry about recurrence rarely, from time to time or a lot? What is your biggest worry today, right now, this minute?

I used to worry about recurrence a lot. In fact, I still do quite often, especially when I have aches and pains. Yet, lately, I’ve worried less about recurrence and try to live the best life I can. My Achilles heel is being exposed to too much cancer information; this gets in the way of my mental health. My biggest worries today are about maintaining my physical and mental health. I’m always struggling to find a balance, particularly with my emotional health.

6. Do you feel cancer has made you a better person? Yes, I know this a loaded question. If you do, specifically in what way?

No, cancer has not made me a better person, but it has made me a different one. Cancer was the catalyst to get rid of my pre-cancer miserable life and trade it in for one that matters more to me (before cancer, my life was unbearable). After cancer, it became even more unbearable. In many ways, my post-cancer life is better than my pre-cancer one. However, in many, many ways, my life is worse because of cancer. This question has been difficult to answer; I have a complicated relationship with cancer. Then again, who doesn’t?

7. What is your favorite cancer book?

Because of my PTSD, I must actively limit how many books on this disease that I read and handle. I love Audre Lorde’s work, but I try not to read books on cancer in general.

However, I do read books on the aftermath of cancer and on recovering from the emotional distress that cancer causes. Some of my favorites in this genre are Hester Hill Schnipper’s survivor-focused book, After Breast Cancer: A Common Sense Guide to Life After Treatment and Jean Shinoda Bolen’s Close to the Bone: Life-Threatening Illness as a Soul Journey (it sounds like the book is about cancer-as-journey, but it’s not. It has helped me tremendously.)

My favorite book that doesn’t focus on the cancer experience, but applies to any sort of tragedy has to be Viktor Frankl’s Man’s Search for Meaning. This book is a must-read, and it’s the one I’ve bought the most as a present for friends. I’ve read it several times and keep returning to it in times of stress. Awesome book.

8. Besides your family, where do you turn for emotional support?

I had few family members’ support. My husband revealed he wanted to leave me shortly after diagnosis. It was horrible to have no support from my spouse. I turned to the American Cancer Society’s Reach for Recovery program. One support outside of family turned out to be a wacky support group who, in reality, did more damage than good.

My aunt and brother, who are both in New York, were vital in helping me. My aunt happens to be a breast cancer survivor, so she knows the terror. She was there when I sobbed to her on the phone. My brother is my hero. I also have wonderful friends, and their support was so helpful.

I’ve had psychotherapy and am on psych medications to calm down the anxiety and depression that resulted from having had cancer. These treatments have been a blessing to me. As well as my dear cat, Cosette (now deceased) who gave me love during the darkest times when I felt unlovable. Our online support community is fantastic, and has been so wonderful to be a part of.

Cosette: my special helper during my cancer crisis.

Cosette: my special helper during my cancer crisis.

9. How many cancer blogs do you read and why do you read them?

Not enough. At my best, I was reading as many as possible, but then time got really short with heavy work obligations and commitments. It was impossible to read many blogs. However, I do read several blogs for so many reasons — for connection, validation, and a feeling of not being alone, as well as to support the blog’s author.

10. Do you call yourself an advocate? If so, what drives you?

Yes, I’m an advocate, through my words and trying to educate others through sharing my experience. What drives me is all the deaths that keep piling up from metastatic breast cancer, and our culture really doesn’t get it.

In particular, I advocate for self-advocacy, trying to help others find their voice and advocate for themselves in an often harsh, uncaring medical system.

Now, my readers, it is your turn. I look forward to reading your answers!


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Posted in Cancer | 4 Comments »

Lori Marx-Rubiner and Jason Brown

Posted on: August 7th, 2017 by
6

For many, the past few weeks have been filled with grief from losing people to cancer. Even though I’ve never met these individuals in person, I feel privileged to have been a part of their world in some way in the online community. And although I’ve never met them, I feel I knew them, and my grief is deep. And real. Our relationships were real. That’s what the online community does: it enables us to get to know many people we may never have otherwise met and, if we are lucky enough, gets us to take things many steps further by meeting them in person. Whether online or in person or a combination of both, we are there for each other and support each other through the good times and the bad.

And lately these have been bad, trying times. I and the rest of our community have been hit hard by these lives gone too soon by the asshole disease known as cancer.

This post is about one of those who recently died from metastatic breast cancer, Lori Marx-Rubiner, a fierce advocate. AnneMarie Ciccarella, who was a close friend to Lori — in person and online — wrote a moving tribute to her, as did Dr. Deanna Attai, who also knew Lori well. I wish I had met Lori in person. But, through the online cancer community, it really doesn’t take long to figure out what a person is like. And from the first time Lori and I communicated, I knew she was wonderful.

I got to know Lori during #BCSM chats and her blog Regrounding. We immediately hit it off. She and I would wish each other a happy Rosh Hashana. And we had another thing in common: we both loved Jason Brown, a remarkably talented figure skater. Jason Brown happens to be my favorite men’s skater. I love his unique style and flexibility. He always is genuine, down to earth, and really nice, with a great smile that lights up any room.

Like Lori.

Turns out, Jason happens to be related to Lori and even taught her son a few things about skating. So here Lori and I were, during a #BCSM chat, waxing poetic about Jason Brown. We both agreed that his long program routine, Riverdance, was spanking fantastic. If you haven’t seen it, please do; it’s a real treat. Whenever I’ve watched Jason Brown perform, I’ve thought of Lori. And I will continue to do so. Brown is vying for a spot in the Olympics in 2018. I hope his Olympic dreams come true.

I wish Lori were still alive to see all of her dreams come true.

I am overwhelmed by the emotional pain of losing Lori, and I often think of her husband and son. I pray for them and hope they feel the circle of love surrounding them.

I must go now.

Here’s the video. Lori, this one is for you:


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Posted in Cancer | 6 Comments »

Chasing Lincoln

Posted on: August 1st, 2017 by
12

Lincoln

I’ve really been off the grid for the past three months. So many setbacks and upheaval going on in my life that it’s been almost impossible to focus on one of the things I love doing most in the world: writing. So here, then, is my first blog post of many to come.

My favorite United States president has always been President Abraham Lincoln for a myriad of reasons we know about. Through no influence of my own, he is also my daughter’s favorite president.

Lincoln carried the weight of a country divided on his shoulders and sported eloquent speeches and writings. But Lincoln cannot be mythologized. He was human. He was subject to depression and had major political and personal setbacks. And that’s what this post is about: setbacks.

Over the past year, my dad’s dementia not surprisingly worsened — to the point where a nurse recommended hospice. A few days later, a social worker said he didn’t need to be in hospice after all. I guess it all depends on the day a healthcare professional sees my dad. The nurse saw a shell of a man, hunched over, who could barely function. The social worker saw him on a day when he was more lively and sitting upright. I’ve been worried sick over him and my mom and have been preoccupied for a long time. This month, Arielle and I will be flying to Florida — and yes, I always choose the hottest time of the year to visit Florida — so that Ari can visit her grandparents and I can assess the situation with my dad.

In addition, my aunt, who has been like a second mom to me, has been ailing horribly from advanced lung disease. She’s been in the hospital, like, forever. She is gradually declining, and there’s nothing I can do about it. My brother visits her as much as he can (they are both in New York), but understandably I cannot go to New York often. My aunt and I speak by phone, and I am her healthcare proxy, so I’m pretty much kept in the loop about her medical condition and care. But I still feel powerless.

And, most recently, another devastating setback: Three weeks ago I was laid off from my position as an English professor, after more than 20 years of employment at the university. The lack of grant money in Illinois and inability for legislators to balance the budget contributed to ever-declining student enrollment and, unfortunately, a huge bunch of us lost our jobs. (By the way, Lincoln would be appalled at the corruption of Illinois politics today.)

Despite the horrible feelings that come with being laid off, I harbor no resentment toward the university where I found my home and where my passion for teaching was re-ignited. The decision to terminate my position was not done deliberately to harm me, and I have no bitterness at all. I believe bitterness is for bitter people.

Prior to my being laid off, one of my close friends, Ari, and I were planning a trip to Springfield, IL, where Lincoln spent much of his pre-presidential professional life. I’d been there before, but Ari hadn’t. She wanted to see Lincoln’s home and experience Lincoln, not just read about him from history books. We were set: the hotel and rent-a-car arrangements made.

Then I was laid off. And I felt a trip like this — even though Springfield is only a two and a half hour drive from where I live — seemed too exorbitant. I was ready to cancel the trip, retreating deep into my own sorrow and grief. But my good friend persuaded me that this trip should not be cancelled, and Ari agreed.

So there we were, in our rent-a-car on a sunny day driving down to Springfield. Ari loved seeing the Lincoln sites and getting a good glimpse of Lincoln’s world of triumphs and setbacks.

Where Lincoln and his partner practiced law

Where Lincoln and his partner practiced law

This trip was well worth it and reinforced my respect for Lincoln. After all, he handled adversity so well despite his battle with depression — in addition to the major stresses of his keeping the United States united and his anti-slavery work, many critics tried to tear his reputation apart. He handled setbacks with grace and modesty.

I am grateful for Lincoln, not just for what he did for the US, but how he inspired me. If he could handle the country trying to tear itself apart, I could handle the feeling of being torn apart by temporary joblessness.

So here I am, in the job-seeking pool, looking for college teaching positions. And whenever I have setbacks, I hold Lincoln close to my heart. And thinking about this man has helped me gain strength and cope with the abyss of the unknown.

What have been your setbacks? How have you coped with them?


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Posted in Grief, Healing, Guilt, Loss of Control | 12 Comments »

On Lotteries

Posted on: April 28th, 2017 by
4

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I’ve never been a fan of lotteries. I know that, for many people, they can be exciting and such, but the whole idea of there being few “winners” and many “losers” does not sit well with me. Oh, I admit, I’ve played the lottery under peer pressure.

In reality, participating in a lottery is not inherently wrong. If people enjoy it, so be it.

But in my household the word “lottery” has taken on a new meaning. One of missed opportunities.

Let’s start at the beginning: about two years before I adopted Arielle, I was talking in broken Mandarin to a husband and wife from China. In their native language, I told them my daughter was in China. When I saw the puzzled look on their faces, I explained in English that I was in the process of adopting a baby from China. The gentleman burst out, “That baby is a lottery baby!” The wife explained, “That baby will be a one in a million baby. That baby will be so lucky to have a home in America.”

And here I was thinking I was the lucky one. Even though I hadn’t yet met my daughter — in fact she hadn’t even been born yet — I never looked at her as a lottery baby. And here were total strangers imposing this judgment on my future daughter. I was incensed. Nevermind that my daughter would lose her biological parents, her culture, and, to some extent, her identity. She was dubbed by these Chinese natives as a “lottery baby” and by well-meaning people who were born in the United States as “Such a lucky girl.”

When my baby daughter and I landed from our long trip from China, I overheard one of the flight attendants saying proudly, “The China doll has come home to roost.”

Whatever.

Now, Ari is eight years old and has adapted well to her third elementary school where lotteries have taken on a new meaning: holding children back.

As my readers recall, kindergarten was a nightmare, so Ari started first grade at a public school, which was a far better experience. In second grade, she won a lottery to stay after school three days a week to take a keyboarding class for two weeks. Although I was happy for her, I couldn’t help but feel for the kids that didn’t “win” the lottery.

By this time, Ari and I were outgrowing our tiny home and this coincided with her strong desire to learn Mandarin and understand more about her culture. The summer before, she attended a week-long culture camp for Chinese American kids, and she became hooked on Chinese culture and language.

So we deliberately moved to an area where the school she’d be going to taught Mandarin. I called the school several times to verify that Arielle would be in the Chinese immersion program. The administrator told me that they had a great Chinese immersion program. Perfect. But after we moved, and I went to the school to enroll her in this program, the same administrator told me that the program was in such high demand, kids were admitted only via lottery system. I made an excellent case for Ari, but the administrator held fast.

There were no spots open for Ari to attend the Chinese immersion classes.

Lottery

Besides, the administrator added, kids started such a program via lottery at kindergarten. By third grade Ari would never catch up, she claimed. I argued that she could indeed catch up, but Ari was turned down anyway. I was bitterly disappointed, and I later had to break the bad news to my daughter. “It’s not fair,” she said one day as she marvelled at Chinese lanterns made by the children in the Chinese immersion program. “All because of a stupid lottery.”

I felt cheated, like I got the old bait and switch. Why would the administrator wax poetic about a program Ari had no chance of getting into?

To add fuel to the fire, I found out about a great reasonably priced before and after school program at the school itself. I applied for it but was rejected. Why? You guessed it. Kids got into this coveted program through a lottery and it was highly competitive as everyone was vying for spots in this program. I will be trying to get Ari into the program for the next school year, but I know our chances are slim. Ari loves science, and there are science and homework clubs after school, but she can only attend if she can stay in this before and after school program. Sorry, but no tumbling dice. Thanks lottery.

Now that my rant is over, let me say, that life is still treating us well. I have reminded Ari that a lottery worked in her favor at her previous school when it came to taking a keyboarding class that many kids were vying for. I enrolled Ari in a Chinese Immersion language center, so she’s getting the Mandarin language and Chinese culture instruction she deserves. She will attend the week-long culture camp again this summer, and she is in a before and after-school daycare facility where she has made friends.

Life is good. Lotteries, not so much.

Have you encountered lotteries like these?

Please feel free to share your stories. I would love to hear them.


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Posted in Motherhood | 4 Comments »

Competing in Cancerland

Posted on: April 20th, 2017 by
10

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“A house divided against itself cannot stand.”

— Abraham Lincoln

We who’ve been hit with the cancer bomb are now part of a community we never wanted to be part of in the first place. We should be unified. But we are not always unified. We should find comfort from each other. But often we do not.

Take the breast cancer community, for example. Sometimes rifts occur between each other — for instance, early stagers vs. those with metastatic disease, those who support pink-related celebrations vs. those who do not, and those who have reconstruction vs. those who choose not to, and so on. Life is too short, painfully too short, for us to be divided.

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And let’s not forget those people who question others’ treatment protocols. I will never forget how my breast cancer “support group” constantly interrogated me about my supposedly wrong treatment protocol by the wrong doctor and in the wrong hospital.

Truth is, as most of us know, breast cancer is neither black nor white, but a great shade of murky.

It’s not just the breast cancer community that feels conflict within itself. Too many cancer comparisons exist for my liking. The well-known division a few years ago between Pancreatic Cancer Action and the breast cancer community because of the former’s faux pas: Pancreatic Cancer Action put out a sort of videomercial implying breast cancer is better than pancreatic cancer.

Instead of cancer unity, feelings were hurt on both sides of the cancer spectrum. My response at that time can be found here.

But I want to point out a lesser-emphasized conflict: between those who work through cancer treatment and those who do not.

In fact, the next part of this post was conceived way before I even knew what a blog was and while I was in treatment for breast cancer. I was in New York City visiting family a few days after my latest chemotherapy treatment. I used vacation days, as I was still working full-time and juggled a part-time job throughout treatments.

My aunt and I hung out with her very good friend, L., a generally wonderful person who was being treated for ovarian cancer. Over lunch that I could not eat, L. casually said to me, “You know, it’s people like you [who work during treatment] that make it tough for the rest of us who can’t work. Employers see people like you working and believe everyone can work through treatment.”

That judgmental remark knocked the wind out of me.

I immediately felt shame and guilt.

Yes, I was one of the lucky ones, the one who could work during treatment. Nevermind, that this was no easy feat. I chose to work during cancer treatment because I had no choice: my husband and I were precariously close to homelessness and starving if I didn’t keep my employment.

(And as a side note, I did happen to want to work a little just to quench my miserable life with a sense of normalcy, the kind of normalcy a work routine would provide me.)

L. never made that remark again, and we spent lots of fun times over the years. Sadly L. eventually died from ovarian cancer. I’ve never harbored ill feelings toward her for that remark and, to some extent, I understood where it came from.

But I never forgot it.

Yes, I worked during cancer treatment, inadvertently becoming the cancer warrior archetype I never wanted to be. I was unaware of it at the time, but people perceived me as the stoic woman who could do it all — work two jobs, have chemotherapy and radiation simultaneously, and pay the mortgage. And, I hate to admit it, but I started believing that I could do it all.

Stupid pride. Stupid necessity.

I remained highly competent at my jobs, but working took a toll on my health. How could it not?

Working through treatment didn’t do my psyche any favors either.

And I must fess up: during treatment I was also guilty of being judgmental — against those who didn’t work. “It must be nice,” I jealously thought when talking with people who stopped working during treatment. “I wish I had that option.” I used to envy those who were retired or not working and being taken care of by a loved one. I’m ashamed to admit I had such divisive thoughts.

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I guess wanting what someone else has is human. So is jealousy. So is pointing fingers.

Maybe the path to understanding each other isn’t as straight as we’d like it to be. It dips and curves. But we can still get to a destination of mutual respect and understanding.

Did you work during treatment? Why or why not?

Have you ever felt judged regarding illness?


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Posted in Cancer | 10 Comments »

Radiation Fallout

Posted on: April 6th, 2017 by
6

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The train eases into the early morning fog. Other commuters are lulled to sleep on their way to work. I slothily lean my head against the window and look out, exhausted. But I cannot sleep. Outside, blurred lights blink past me.

All I think is, “What the hell just happened?”

The train’s route is clear, but I’m lost.

This is my first “normal” commute to work after completing radiation to help treat breast cancer.

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Thirty-three workdays prior to this commute, I found myself face-to-face with the radiation machine for the first time and facing a major disruption to my work schedule. Being the sole provider of my family, I had no choice but to work full-time while undergoing radiation and chemotherapy simultaneously. When radiation would eventually end, chemotherapy would continue for awhile.

I had a coveted 8:10 a.m. radiation slot, which meant — with my altered commute route — I got to work at 10 a.m. and stayed to 6 p.m.

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I was preoccupied during those days —

I had to comply with medical orders and show up faithfully by 8 a.m. every workday for my radiation treatment, as well as deal with an increasingly resentful boss who demanded I log in my adjusted hours to prove I was putting in the same number of hours as everyone else. In addition, my marriage was failing. My family was geographically far from me. While my brother and aunt were highly supportive, my parents were in denial about cancer. They pressured me to be happy and keep my disease a secret. A couple of friends distanced themselves from me.

I needed a hearty dose of local love.

And I got such love — from a most unexpected source: my radiation oncologist and her staff. Dr. K would always greet me with smiles and laughter — and frequent hugs. She cared about my physical and emotional welfare, and she cared about what was going on in my life. I remember showing up to radiation sick as hell, and Dr. K immediately ended her conversation with a fellow physician and tended to me. When her staff adjusted me on the radiation machine, they did so with warmth. They spoke to me as if I were a member of their family. When I broke down sobbing in front of a nurse, she held and rocked me like a baby and wiped the tears from my face and cleaned my eye glasses.

Once Dr. K said, “Oh Beth, I love you!” as she hugged me. Dr. K’s staff gave me hugs throughout my entire radiation treatment. I know this sounds strange, but as much as radiation sucked, it was also my safety net. And, as difficult as it was to cope with cancer and juggle treatment and work, I looked forward to radiation each day because I was cared for, nurtured, and treated so well. Even while my body rebelled with radiation burnout and despite the Chernobyl going on in my right breast, I emotionally thrived in a weird way.

Then, after 33 days, I got my certificate for being finished with radiation and was shown the door (in a nice, loving way). It was “see ya” and “you’re done, rah rah.” B’bye safety net. Just when I thought I was on the safe side of the tightrope of dealing with cancer treatment, I found myself dangling high in the night air with no net beneath me.

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And after a weekend of emotional disbelief, numbness, grief, and shock, I found myself on a train, confused, on a regular morning commute.

To this day, I wonder if it would’ve been better to have impersonal care and not get too attached to Dr. K and her staff, or whether the care I received — albeit for a finite period of time — was what helped me through cancer treatment. I choose to believe the latter. With my personal life gone awry, I needed the radiation staff as an anchor, even if it was only temporary.

What has been your relationship with doctors and their staff?

Have your relationships with medical personnel helped you through treatment?


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Posted in Cancer | 6 Comments »

Afraid, Acted Anyway

Posted on: March 31st, 2017 by
12

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True to my word, after I pressed the Publish button on my post on March 3, I picked up the phone and made an appointment for my brain MRI.

Prior to that date, I had been stalling. At several points I had frantically told myself and friends and my psychotherapist and anyone who would listen that it was well within my rights as a patient to refuse this medical procedure.

Everyone agreed that I could refuse the brain MRI.

My fear-besotted mind agreed. MRI machines were the enemy. Case closed.

It was at the height of my fear that I was teaching the powerful memoir called I am Malala: the Girl Who Stood Up for Education and was Shot by the Taliban by Malala Yousafzai. (If you haven’t yet read it, it is an amazing book.) Here was a young Pakistani teenager who advocated for the education of girls — even with the Taliban running rampant in her area of Pakistan — and risked her life to get her message across: that girls needed to get an education. Given the book’s title, the following is not a spoiler alert: the Taliban shot her in the head, but she lived. (Post-memoir, Malala continues to advocate for education for children worldwide.)

Re-reading this book got me re-thinking about courage. Not the kind of courage that has its usual mass appeal: the brave, stoic warrior who is superhero-personified. But the kind of courage that is real to me — being afraid, being petrified, being terrified. And acting anyway. Despite the fear. Despite the horror.

That’s what Malala did. She was scared that the Taliban would throw acid in her face as she walked to school. She was terrified that she and her family might be killed. But she acted anyway.

So I thought about Malala’s courage, and I about-faced. I knew I had a post to write and publish, as well as an MRI to schedule. After all, if Malala could face the likes of the Taliban, I could endure a stinkin’ MRI.

So after I hit the Publish button, I found myself on the phone with the scheduling department. As luck would have it, an appointment was available a week later, at 7:30 p.m. I didn’t like the idea of being at the hospital’s Center for Advanced Care at night because many of my ICU memories are of struggling at night at the adjacent hospital. For me, nighttime at the hospital is eerie.

On MRI day, a good friend picked up my daughter for a sleepover, and another good friend drove me to and from the MRI. I had unsure traction, like someone navigating the slippery road ahead during a snowstorm.

I was petrified. I was lost in the haze of fear. But there I was, getting the brain MRI to the tunes of the Rolling Stones, thinking that I ought to have my head examined, and smiling with the irony of it all. Xanax helped conjure up courage. But truth was, despite the Xanax, the technician’s soothing voice, the warm blanket, and hearing the Stones’ “Emotional Rescue” (the irony was not lost on me here either), this I know:

I was still afraid.

I tried to stay as still as possible amid the whirring and banging sounds of the MRI machine, staving off claustrophobia and feelings of suffocation.

Despite my terror, I was courageous. I was afraid, yet I acted anyway.

I couldn’t stare down fear, but I stared at it. And that was enough.

Afraid

Do you get scanxiety?

Are you able to alleviate scanxiety? If so, what techniques do you use?


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Posted in Cancer | 12 Comments »

‘I Bet You’re Proud You Beat Cancer’

Posted on: March 3rd, 2017 by
16

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These are the words I recently heard from a medical assistant at a neurologist’s office. After providing my extensive paperwork that listed all the medications I was taking, as well as my medical history, this girl was irritating the hell out of me. She kept asking for information that I clearly stated on the medical history form — a form that I was not-so-politely told by the receptionist when making my appointment that I had to bring to the appointment.

In regurgitating my medical story in the five minutes or so she spent with me, I had to relive my breast cancer diagnosis and treatment, as well as tell her about my PTSD medications. Then she looked at me with amazement and said with glowing admiration, “I bet you’re proud you beat cancer.”

I thought I heard it all, but apparently I haven’t. I wish I could’ve told her that I didn’t beat cancer, that cancer had beaten me up pretty badly, and no, I’m not proud of myself. Survivorship thus far is great, but it’s not as easy as some people think.

And no, I’m not okay.

Instead I said nothing and awkwardly looked down at the floor. I was too afraid to think about educating this woman, who probably meant well but missed the mark anyway. My anxiety was understandable — I was seeing a neurologist for the first time.

***

I’ve been having issues with balance for years now, but it’s lately been getting worse. I first noticed balance problems after chemotherapy, and I realize they could have been made worse by psychotropic medications, which started shortly after cancer treatment began. It’s really difficult to pinpoint what exactly is causing me to have balance problems. I can take long walks, no problem, but it’s easy for me to lose my balance. Stairs are scary to navigate because I’m afraid I will fall one day. And with osteopenia, I’m afraid I will break a hip prematurely.

I’m too young for that shit.

So here I was — after talking to the well-meaning-but-clueless girl — talking to the neurologist, who was generally nice. She said that the medications could very well be causing all the problems, but just to make sure I’m okay (did I mention, I’m not okay?), she ordered several blood tests and a (gulp) brain MRI. She kept asking me if my cancer had metastasized and I kept saying “Not that I know of.”

Now I was really afraid.

But I still felt comfortable enough to confide in her. I told her I have never been the same since cancer treatment. And that since treatment, I have felt I’ve aged a lot and am fatigued. And while my problems with balance could be caused by other factors, cancer treatment took a toll on my body and psyche. I saw from her glazed expression that she was skeptical. I was bitterly disappointed, for I realized that many in the medical establishment are in denial over the damage cancer treatment causes.

While the neurologist examined me, she made no effort to realize that she was evaluating a person, not just a medical problem. So I left the office without emotional validation, just an order for blood tests and the brain MRI. I went to the blood lab that day, but I still haven’t yet set up an appointment for the brain MRI.

I’ve balked about the MRI because, frankly, I’m scared shitless. In addition to having anxiety during this test, I’m afraid the MRI will find one or more of the following problems:

* Cancer mets to the brain
* A benign tumor
* Early onset dementia
* Alzheimers
* Multiple Sclerosis
* Brain damage from chemotherapy (which will be denied, of course)

I’m sure there are more possibilities, but I refuse to ask Dr. Google. Talk about a virtual mind-fuck. No second helping of paranoia please.

I will be setting up an MRI appointment as soon as I post this. In the meantime, I will be doing some core-strengthening exercises that a Twitter friend recommended and some mind-strengthening exercises with my psychotherapist.

I realize that one can be afraid and still act anyway. That’s true courage. That’s what I preach in my book, Calling the Shots in Your Medical Care. I need to take a page from that book — OK all the pages of that book — and embrace the flames of courage.

I once again must I practice what I preach.

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Have you ever felt unheard or dismissed by a doctor or other medical professional? I would love to hear your stories.

I would appreciate any words of solace or encouragement.


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Posted in Breast Cancer | 16 Comments »

Heart Is Where the Home Is

Posted on: February 17th, 2017 by
5

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I’ve been off the grid lately, but not because of writing gridlock. It’s because of exciting news: on February 4, my daughter and I moved into a larger house, one with more than one bathroom (finally, yay!).

So instead of writing for the past couple of months, I’ve been packing with the help of my eight-year-old sidekick. Life has gotten busy for us — between school, play dates, and Ari’s other activities, and now the move consuming our attention. And, as anyone who has moved anywhere can attest, moving is a major hassle. All the back-breaking movements and maneuvering over boxes make me break out the Salonpas.

But moving is also an activity of the spirit. While sorting through the many long-forgotten items that bring up long-forgotten memories, I came across the past: the traditional Chinese dress and tiny shoes I dressed Ari in as a 13-month-old in China, as well as the pink, embroidered outfit she wore on “Gotcha Day,” when she was first put into my arms. The nametag that had been attached to Ari’s outfit on “Gotcha Day.” And I found another nametag, one I wore to a teaching conference where I received a national teaching award. A vase the Chinese government official gave me on the day I adopted Ari in China. As I continued packing, I uncovered more gems. Ari’s dance costumes. Her first pair of shoes. And the high-heel shoes I can no longer wear, but she can, so they now belong to her. And the first place medal I won at a 5K.

(Before you get too impressed, I am the slowest runner on Earth, and when I received the medal in the mail, I called the race organizers to tell them it was a mistake and that I needed to send the medal back. They said I won the race in my age group and therefore I won the medal fair and square. This leads me to believe I was the only one in my age group running in that race.)

Then there are the other mementos. My school diplomas. The tassel from my college graduation. Sketches and paintings long etched from my memory.

Then there are other items re-newly discovered: the Mickey Mouse bank my aunt gave me when I was five, a ceramic letter holder from my parents, books given to me as gifts, meaningful vases and so on. Some more random paintings. As much as I treasure these items, I decided to let them go — I gave them to a local charity. I found myself making difficult decisions about what to give up and what to keep, and I ultimately decided to give up, rather than keep, most of the items.

The impetus behind my becoming a minimalist and give away mementos was a rather simple one: while we were moving to a larger house, the home is by no means large. To avoid cluttering the place, I needed to let items go. And, through necessity, I adopted a minimalist philosophy that I’m hoping to carry from this day forth: Only keep what you need.

So on February 4, we took only what we needed to the new home and left some of the past behind. Ari and I took the most important essence of home — each other and our cat Hemi — and after an exhausting day-long move, we settled uncomfortably into the new house.

Uncomfortably because the greatest memento of all was our former house itself. After all, this was the home Ari first knew in the United States. We treasured our large memories in our small hearth. And so it was with a teary goodbye and lots of pictures that we left the only home we knew together as a family.

Our new home

Our new home

So today, nearly two weeks after the move, boxes gradually being emptied and Arielle adapting to yet another new school, here we are.

We rang in the New Year with a new house and the promise of new memories.

Because what separates the past from the future is not just the present.

It is us.

Have you ever found any long-forgotten precious mementos? If so, did you keep them or give them away? Feel free to share.


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Posted in Motherhood | 5 Comments »
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