Crying Myself Raw

Posted on: December 14th, 2018 by
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Helene's Stone

I’ve been away from the blogosphere and away from writing for what, to me, seems too long. Truth is, I have been so busy teaching and grading and preparing for classes and helping my daughter with her piles of homework and having some semblance of a social life that I haven’t really had the time for my blog.

So now, during finals week and with piles of essays to grade, I’ve decided to write.

Smart move? Probably not.

I want to be a more consistent writer, but right now consistency eludes me. So although my past goal has been and still is to write one blog post a week, I know that this won’t always be the case, and I’ve accepted that. I will do the best to write when I can.

There’s something else that has been holding me back from blogging, though.

Grief.

Those who’ve been following my blog and who know me are aware that in a relatively short time span, my beloved father and doting aunt both died. At the times of their deaths, people told me that the first year without them would be the most difficult. That time heals all wounds.

I don’t buy into that ideology any more.

My dad died less than a year ago, and it’s been excruciating. The unveiling of my father’s tombstone was December 2, and, though surrounded by family, I felt no comfort. All I felt was pain and feeling abandoned by my daddy. My aunt Helene died August 18, 2017, more than a year ago and it’s as difficult now to cope with losing her as it was a week after she died. In fact, on the last night of Chanukah, my brother lit candles in my aunt’s menorah and texted me a picture of it. The waterworks began in a nanosecond.

Helene's Menorah

The truth is, the searing pain of losing someone so beloved really never goes away, and I’m coming to accept that.

I’ve spent much of the last year and a half crying myself raw. Added to the grief are some well-meaning folks who have told me that my parents (yes, my aunt was a parent) are no longer suffering and that my grief will lessen over time. And that I should get over it. Like, why am I still at Point A, when I should’ve advanced to Point B or even Point C?

The “getting over it” and “moving on” part sounded familiar. It’s what people told me after my conspicuous cancer treatment of chemotherapy plus radiation ended. I was told I needed to put “this” (another word for cancer) behind me once and for all. Well, it’s been nearly 18 years since cancer shit on my world, and I’m not over it. I’ve managed all these years, but cancer has its own agenda; it will not be delegated to the rearview mirror.

Maybe what I need to realize is that grief is permanent. There is no getting over trauma, whether it is losing that precious someone or being diagnosed with a disease.

How do you handle grief?

Were you ever told to “get over” a trauma?


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Posted in Grief, Healing, Guilt, Loss of Control | No Comments »

The New Abnormal

Posted on: September 28th, 2018 by
12

The following gem appeared in my email inbox this week: this highly knowledgeable doctor from a very prestigious US medical school “encourages the return to ‘normal life’ or a ‘new normal’ following breast cancer.”

I think we can all read into the subtext of this quote: the good doctor wants patients to “get over it,” with the “it” being cancer. Also, the physician can help us survivors of this horrible disease live a “normal life” by helping us to cope after cancer treatment.

Trying to help survivors only after their treatment is like putting the proverbial cart before the horse. Don’t get me wrong: of course, patients should get psychosocial and medical support after their treatments, but what about helping patients — I’m thinking psychological/emotional issues here in particular — before and during treatment?

And I must say, the word “normal” is — and always has been — meaningless. There is no normal. This is especially true in the cancer realm.

Instead, cancer patients face different shades of abnormal. In fact, now that I think about it, if there’s no normal, is there really an abnormal?

Our medical system is broken: more than ever, doctors try to treat the whole patient, but their efforts fall short. My oncologist is wonderful and cares about my quality of life. But when I was diagnosed with breast cancer, his concern, understandably, was to treat the cancer aggressively. He did his best to comfort me, as did the nurse who hugged and rocked me gently while I wept like a baby in her arms. As did my oncology nurse who helped me during the cancer trauma by convincing me to continue my chemotherapy regimen.

These medical staff always try their best to help patients, but other than referring me to support groups, which sucked for me (click here to find out about one of the shittiest support groups ever), there was no effort to nudge me to find a social worker, psychotherapist, or other mental health professional. The entire focus was on killing cancer cells.

Ultimately, I paid a heavy price. After treatment, my mental health — deteriorating throughout treatments — eroded, and I have had to see psychotherapists (I eventually did fire one; more on her in another post) and a psychiatrist for medication to control the severe depression and anxiety I constantly experienced post-treatment. The PTSD flashbacks and up-all-nighters holed up in my bed have been no joy ride, but with the help of mental health professionals, I am living a stable, fulfilling life.

I know I’m taking a risk by writing this post; mental disorders have a stigma attached to them. I might be judged and written off as “crazy.” But the truth is, cancer can never return someone to a “new normal” state. What was unleashed on me years ago were abnormal cells. And 17 years later, I’m lucky and grateful to be alive, but I still have this trauma etched deeply in my psyche.

My mind is forever altered.

And it’s not because I’m experiencing a “new normal.”

Every day is a struggle.

I hate that I have to work so hard on my mental health.

But one of my greatest strengths is persistence, and I will never give up on me.

Interestingly, also this week, an article from Nursing Times appeared on my Facebook news feed. The article asserts that most women in England with breast cancer have not been told about possible post-treatment anxiety and depression: “The landmark survey of nearly 3,000 women with breast cancer in England, carried out on behalf of Breast Cancer Care, found 33% experienced anxiety for the first time in their lives after their diagnosis and treatment.”

Samia al Qadhi, chief executive of Breast Cancer Care, one of the charities that conducted the study, said, “‘Damaged body image, anxieties about the cancer returning and debilitating long-term side effects can disrupt identities and shatter confidence, leaving people feeling incredibly lonely, and at odds with friends, family and the outside world.’” To read the entire article, click here.

The survey results might seem alarming, but they don’t surprise me.

The US is also abysmal in helping the mental health of those with breast cancer or who have had breast cancer.

Doctors must understandably focus on treating the disease, but I wish they didn’t do so at the expense of sacrificing the person who has the disease.

This October, instead of a conversation on the heroic, brave breast cancer survivor-warrior archetype, I would like the conversations to veer toward research for a cure one day, as well as to those of us who find ourselves mentally and physically incapacitated by cancer and its treatment effects.

Happy Face

Pinktober will be filled with insensitive, often-crass promotions and cause marketing, and we survivors will be expected to put on a happy face. But what patients like me care about is to be physically and mentally healthy.

How has cancer diagnosis and treatment affected you psychologically and/or physically? I am eager to hear from you on this matter.


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Posted in Breast Cancer | 12 Comments »

My Greatest Strength

Posted on: September 7th, 2018 by
4

“Nothing in this world can take the place of persistence. Talent will not: nothing is more common than unsuccessful men with talent. Genius will not; unrewarded genius is almost a proverb. Education will not: the world is full of educated derelicts. Persistence and determination alone are omnipotent.”

— Former US President Calvin Coolidge

Strength

It’s no wonder that this Calvin Coolidge quote has always resonated with me, for my greatest strength is determined persistence.

I wasn’t the most intelligent person in school. Not by a longshot. But I can tell you with equal confidence that I was the most persistent. When I have a goal in sight, it seems I’m hard-pressed to find someone who works harder than me at attaining it. Once I’m hungry for a certain outcome, I work my best to make sure it happens. Of course, things don’t always go my way. But I try my hardest to ensure they do.

In school, I studied my best, and worked so hard that I couldn’t see or think straight. And, as a result, I often achieved excellent grades. However, like many people, I also had my share of less-than-stellar outcomes. Nevertheless, I had no regrets because I knew I couldn’t have studied more diligently.

Persistence and determination are my foundation, and they’ve served me well. Because of these qualities, I’ve succeeded beyond others’ expectations. An advisor at Michigan State University told me to drop out of school because of my low grade point average. She was convinced I would drop out of college for good, due to a dismal GPA my entire freshman year. Thanks to my tenacity and the encouragement of an outstanding professor, I eventually thrived and graduated with a GPA I was proud of. It was not intelligence that launched me onto the stage at graduation; it was perseverance. And when my college English placement scores were low, another Michigan State advisor told me I wouldn’t succeed in college due to low literacy. However, I did the unthinkable: I graduated with a degree in English.

I believe persistence and determination are steel beams that help strengthen us in times of adversity. And I try to impart this value to my college students. I teach freshmen, who are not English majors, but they find themselves in my required composition courses. Some are scared of writing, while others lack overall confidence in themselves. Besides teaching them the required material, I try to help them understand that steely persistence is a major key to success and helps make discipline a habit. And, most importantly, I convey that I care about them as students and individuals.

What is your greatest strength? I would love to know.


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Posted in Advocacy | 4 Comments »

A Summer Blogging Challenge

Posted on: August 17th, 2018 by
2

20160520_154845

My friend Nancy Stordahl at Nancy’s Point has laid down a blogging challenge, and I am enthusiastically taking up the challenge. Here are the questions she presented, with my answers.

1. How long have you been blogging (or reading blogs)?

I started blogging in 2009.

2. How has your blog changed?

The purpose of my blog has changed a lot. I first started blogging because I had a book in mind — one designed to help others speak up for themselves when facing a difficult medical situation in an often-harsh medical landscape. I was nervous about writing an entire book, so I figured I would write blog posts about this topic until I had enough material for a book. Then I just kept blogging because I had a lot more to say about the breast cancer experience than I initially thought, and I wanted to help others with various facets of the breast cancer experience. I write about body image, as well as the psychological trauma side of breast cancer. I also write about non-breast cancer topics, as well.

My book, Calling the Shots in Your Medical Care, was published in 2016.

3. What is your biggest blogging challenge/frustration?

The lack of time. I’m a busy mom, and my job as a college instructor is intense. While I love both jobs, they give me little time for blogging. I do my best to make the time, though. Sometimes I’m more successful; sometimes I’m not. I do aim for one blog post a week.

4. What is your favorite post that you’ve written (or read)?

First Comes Breast Cancer, Then Comes Divorce because it made many of my readers feel they were not alone in having cancer and then having their marriages/partnerships dissolve. Unfortunately, many, many people are out there who have had a serious illness and then watched their relationships die. This post resonated with many people and, I believe and hope, helped them feel less alone.

5. What are your goals for your blog? (Why do you read blogs?)

To help readers know they are not alone and to build a connection with them. I would like to venture out into writing about topics other than breast cancer. I’ve already started writing such posts.

6. How many blogs do you read on a regular basis?

It really depends. I try to reserve some time on Sunday to read blogs from Journeying Beyond Breast Cancer’s Weekly Roundup, as well as leave comments, but if I have stacks of papers waiting to be graded, I make the latter the priority.

7. How do you determine what to share and what not to share; in other words, do you have blog boundaries? (or comment boundaries)

I’m pretty much an open book, but of course I do have boundaries. There are certain things about me and my family that I won’t share. In terms of blogging, I follow the golden rule: I treat others with respect and do not use my blog to insult people.

8. When things get hard, what keeps you blogging (or reading blogs)?

Connecting with readers.

9. What is your biggest Cancer Land pet peeve today, right now, this minute?

Being told that there’s a reason for everything as a way to explain that there’s meaning in having/having had breast cancer. What a bunch of crap.

10. What one piece of advice would you offer to a new blogger?

Be authentic.

11. Share something most people do not know about you. A secret sort of thing.

I’m an introvert who is also an extrovert. This sounds impossible, but it’s true. I’m naturally shy, but I socialize well with big crowds of people at fundraisers and the like, as well as successfully connect with my students.

12. What do you enjoy doing in your spare time?

I’m an avid reader and an artist who sketches and oil paints. But I enjoy most of my time with my daughter and cat, as well as good friends.


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Posted in Breast Cancer | 2 Comments »

My Most Enjoyable Gift

Posted on: August 9th, 2018 by
4

This week, Marie Ennis O’Connor from Journeying Beyond Breast Cancer gave the blogging community the following writing prompt: What gift did you most enjoy receiving?

This is a difficult question to answer, as I have been blessed enough to have had many wonderful gifts during my lifetime. But as the first anniversary of my Aunt Helene’s death is quickly approaching, I would have to say I’ve most enjoyed having her in my life. She has been a great gift to me, and every day I am thankful she was a huge part of my life for so many years.

The best gift she ever gave me was unconditional love. Throughout my entire life, she was a positive, non-judgmental force and influencer in my life. She loved me for who I was — despite my imperfections — and I believe that somewhere, perhaps, she’s still giving me this amazing, palpable love. During my life, my worries were her worries, and my successes were her successes.

She loved and supported me through life’s nastiness. Like my divorce. Like breast cancer.

When my husband and I divorced, she never judged me; instead, she treated me with kindness and the utmost empathy. When I was diagnosed with breast cancer, I went alone to treatments. Some friends and even family members abandoned me. But my aunt never abandoned me. She was a breast cancer survivor and knew what having breast cancer meant. Even if she never crossed paths with this disease, she would still never have abandoned me.

She loved me.

During diagnosis, prognosis, and treatments, I would often call her hysterically, telling her I knew I was going to die from breast cancer. She kept insisting I would be OK, even though, of course, nobody could predict the future. Her reassurance was a lifeline to me. Years later, she told me she had stayed calm for me, but when she hung up the phone, “I completely lost it, hon.” I can’t imagine how difficult it was for her to witness the suffering of someone she loved so much.

And, when life was good to me, she celebrated with me. When Ari came into my life, my aunt felt such pure joy for me, and she fell in love with my new daughter immediately. Helene’s love for me extended to Ari, and my aunt waxed poetic about her to everyone. When I was in China, Helene and I would email each other frequently, communicating about my new daughter. My aunt wanted to know every detail about her, and she oohed and aahed over each picture of Ari that I sent her.

This post has been difficult to write, as I’m experiencing a new grief surge as the anniversary of my dear Aunt Helene’s death approaches. Every day for the past year, I keep waiting to hear her voice on the other end of the phone, saying enthusiastically, “Hi Beth!” She always — and I mean always — looked forward to speaking with me and visiting with me.

My Aunt Helene taught me how to love, and I’m a better, more loving person and a better, more loving parent because of her than I would be had I not had her in my life. I know what unconditional love is because of her, and for this gift, I am most grateful.

Helene and me

Helene and me

You can read more about my aunt here and here.

What has been your most enjoyable gift? Even if you don’t blog, feel free to describe it as a comment.


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Posted in Grief, Healing, Guilt, Loss of Control | 4 Comments »

Adopted Friends

Posted on: August 3rd, 2018 by
6
Ari and Me

Ari and Me

If you’ve been reading my blog for awhile now, you know that my daughter is a Chinese adoptee. When she became school-aged, she ran into problems: she felt isolated because she was one of the few Asians in her school, let alone one who had a white parent.

Understandably, she had identity problems and kept asking me, “Am I the only Asian in the world?”

I tried to explain how populous China is, and the fact that many Chinese Americans inhabit the Chicago area. But she wouldn’t listen, and she cried often, wanting her center, wanting a state of belongingness. So we did what was necessary: we moved to a more diverse area — and school system — that had a much greater Asian population.

Still, there was the issue of her being Chinese with a white parent, and the fact that Ari does not make friends easily. She’s such a sweet, easy-to-get-along-with kid, it seems she should draw friends of all backgrounds like a magnet. But she is shy, and it just wasn’t happening for her. We had a long way to go if she were going to become friends with other Chinese adoptees.

***
I am a shy introvert by nature. My students don’t believe this, as I’m extroverted in the classroom. Still, I’ve gradually developed a strong network of friends for myself, but didn’t know how to go about creating a foundation of solid friendships for Ari.

In particular, I wanted to normalize the Chinese adoption experience for her, so she would see many conspicuous families like ours: Chinese adoptees and their adoptive parents, often of another race. This would lay the foundation of her being secure with her identity.

I was an acquaintance of the people in my travel group, the group of we, the eight families who went to China to get our girls. But I was shy and a bit scared of new friendships, so I shied away more than I should have.

***
As a parent, I wanted to get Ari a bunch of friends who had a common thread. To do this, I had to come out of my shell. Like many people, I would do anything in my daughter’s best interest, so I started connecting with adoptive parents and setting up playdates. I had to overcome my aversion to introducing myself to new people.

And, remarkably, this process has led me to make friends — with the kids’ parents! At her new school, we met a Chinese girl who was adopted. I didn’t know her mom, but I bought a Hallmark card and wrote, “It appears our daughters have something in common. Maybe we can have a playdate? Here’s my cell number.” The mom texted me back, and we have since had playdates. Recently, during Chinese culture camp, I observed Ari and a girl becoming quite close. So I went way out of my comfort zone and approached the mother with an idea for a playdate. We exchanged contact information. I am so looking forward to having a new friend for Ari, and hopefully the girl’s mom and I will also hit it off.

And I’m especially close to some of the people in my travel group, thanks to more playdates. One parent in particular and I set up many playdates. I consider her a dear friend. Luckily for me, she is an extrovert, and she knows many people in the adoption community. And she introduced me to her friends with Chinese adoptees. And now I am fortunate enough to consider them my friends, as well.

It’s amazing that I’ve formed such good friendships with people whose paths I would’ve never had crossed — had it not been for adoption.

Some people have criticized me, saying that all I’m doing is creating a wall between Ari and other potential non-Chinese friends. But nothing is further from the truth. I’m not creating a wall; I’m building a foundation. At this crucial point in Ari’s life she needs to know she’s not alone: she is one in a huge community of Chinese adoptees. And, in fact, she has non-Chinese friends. This kid knows a lot about diversity.

With solid friendships built, Ari’s feelings of isolation dissipated, and she is much happier and better adjusted. And so am I. To learn about when I first adopted Ari, click here.

Friendships linked through adoption

Friendships linked through adoption


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Posted in Motherhood | 6 Comments »

Fatigue

Posted on: July 13th, 2018 by
6

Art 4

Last week, I had a real treat: for the first time in a long time, I went to the Art Institute of Chicago, famous for its impressionist paintings, among other artwork. On a pitch perfect day, I met a dear friend whom I hadn’t seen for awhile at the museum. We had lunch, laughed, caught up on our lives, sat in beautiful outdoor spaces. Then we went to the galleries with the impressionist paintings and marvelled at what was before us.

Art museums give me a sense of spiritual awe that I can never find in organized religion.

I had to leave at 3:00 to catch my 3:30 train to my suburb. I had walked a total of about two miles to and from the Art Institute from the train station, something I can easily do, as I am an avid walker. Yet, this time, walking to and from the museum was difficult for me. I felt enormous fatigue, and when I got home, I collapsed on the couch and felt 100 years old. I spent the entire next day recuperating from such a tiring adventure, an adventure that, years ago, was an easy feat. And I was disappointed because I couldn’t figure out where the fatigue was coming from.

Art 1

True, having had cancer has caused me fatigue. But something else was wrong. I was over the pneumonia. Then I realized the cause of my fatigue:

The medications I’m taking for depression and anxiety seem to have become less effective.

Every night I have insomnia, and it’s so difficult to get up every morning. If I didn’t have responsibilities, I’d be sleeping all day. I’m depressed in the day and anxious at night.

I no longer find what was my most joyful activity — creating art — pleasant. I used to feel so inspired and buoyed by the masters of art that whenever I’d go to a museum, I’d hurry home to create art. There was nothing so exciting as feeling the brushstrokes on canvas. Now, it doesn’t even feel good to paint, and I haven’t painted in a long time. The truth is, my joy bank has run dry.

Psychotherapy helps, but I’m far from the person I used to be and want to be. I want to feel good painting with my daughter and especially with myself, gaining that sense of flow I used to have.

I am in anguish and despair.

Luckily for me, I have an appointment with my psychiatrist in a couple of weeks, and it may be time — I hate to admit — for a medication change. This scares me to no end because it can take two weeks of hell to adjust to psychotropic medication.

And then there’s the stigma against people with mental health issues. There’s always the stigma. And weighty judgment against me for needing medication. No matter how many people preach against the mental health stigma, it’s there — an albatross around my neck.

I’m taking care of myself the best way I know how. And yet, it doesn’t seem to be enough to lift my spirits. I’ve never been the same since cancer; my brain chemistry has changed.

At the same time, I must not focus on the damage that having had cancer caused my psyche and forge ahead.

I must be brave enough to face a possible change in medication regimen.

I must be brave enough to combat the depression and anxiety.

I must be brave enough to face the stigma daily.

I must be brave.

Have you ever have had problems with depression or anxiety? I’m curious to know your experiences.

Art 2

Art 3


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Posted in Grief, Healing, Guilt, Loss of Control | 6 Comments »

Let’s Play Ball!

Posted on: July 5th, 2018 by
3

Baseball

Anyone who knows me understands that I love baseball. I’m a loyal spectator who grew up in the Bronx and loves the New York Yankees. My brother is an avid baseball fan and knows more than I do about each player. In fact, he has an impressive collection of Yankee-signed baseballs, and each year he and my nephew travel to a city the Yankees are playing in to root for their team.

I’ve come across many baseball haters in my life, and I cannot fathom why anyone would hate such an intriguing sport. Baseball is deceptively slow, but truth is, it’s a highly strategic, exciting game with a great sense of history. For example, if so-and-so has the most stolen bases in baseball, rest assured it will be in baseball history books. Until that record is broken, that is.

But over the past few years, I’ve become a bit disenchanted with major league baseball. Going to a game nowadays is cost-prohibitive in order to line millionaire-players’ pockets. The prices of tickets and refreshments for a family add up in a big way. I will always love the Yankees and major league baseball. But if you want a good seat, you need to pay an exorbitant amount of money. And it’s not just Yankee baseball — it’s major league baseball in general. The prices for the Chicago Cubs and White Sox are high as well. If one is lucky, he/she can afford the distant seats. Oh, and bring binoculars.

There’s a solution, however.

Enter the minor leagues.

One of our local teams, the Schaumburg Boomers, is a pleasure to watch. On a beautiful evening on July 3, we paid a low price for fantastic seats along the first base line. We could smell the grass and watch the players dig up the between-bases soil with their cleats.

Of course, it also helped that the Boomers won 3 to 2.

All the action on the field is always visible, no matter where you are sitting. And it’s pure baseball untainted by players’ greed for those astronomical paychecks. The players are involved in the game for the pure love of baseball. Despite their modest paychecks, they play with heart and role-model behavior.

The Boomers provide a family-friendly, community atmosphere, with games for the kids between innings. The announcers boom out kudos to kids and adults who have a birthday or have done something extraordinary. Last year, we attended a game on Ari’s birthday, and unbeknownst to her, they posted her name and age on the huge board in outfield and announced it. The Boomers also gave her a baseball that had been in play.

To my dismay, though, Ari emitted tween groans of embarrassment at all the attention. But it was a special day, and I’m hoping that when she’s older, she will treasure this memory.

Kids look up to Boomers’ players, and these individuals act decently, not like some prima donnas in the major leagues. Two days ago, I watched with shock as the ballplayers lingered after the game, hugging fans and signing baseballs and hats for wide-eyed children. Even with the Fourth of July fireworks beginning a day early, the players continued giving autographs and accepting congratulations by fans for the win.

And after every game, kids and adults run the bases. Ari loves this part of the baseball experience. She happily ran the bases this year as she did the year before and the year before that.

This is the essence of a great baseball experience. The Schaumburg Boomers show that the minor leagues are a major deal.

What is your favorite sport to watch or participate in?

Do you enjoy watching sports in person or on television?

What is your favorite team?


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Posted in Self-empowerment | 3 Comments »

“Safe,” My Ass

Posted on: June 27th, 2018 by
8

In my last post I discussed my possible lung damage from radiation therapy for breast cancer. I am still hoping for the courage to accept this possibility. Someday I will accept that I made the best medical decision I could have, given the misinformation I was given about radiation’s so-called “safety.”

Today is not that day.

Frankly, I’m having difficulty with acceptance. I am angry with my then-radiation oncologist right now. She and her staff painted a golden picture of radiation and blamed my side effects on chemotherapy, which I received simultaneously. Did medical personnel know how radiation could damage the lungs and even the heart? My radiation oncologist had to know something: she joyously told me that because the cancer was in my right breast, my heart would be safe from the damage radiation can cause.

I don’t believe the bullshit I was told anymore. I’m exceedingly worried about my lungs right now, and I’m also nervous about any possible heart damage. What if I do have COPD? My aunt died of complications from this condition, and I fear I will eventually follow suit.

I’m scared.

A diagnosis of cancer years ago left me reeling out of control, and I’ve since struggled to gain some control of my life. I have spent my entire pre- and post-cancer life taking care of my health the best way I know how.

I am trying not to allow my bitterness to house itself in my psyche. Lately, I’ve been wanting to take up boxing and belt a punching bag. Yet, I’ve recently decided that anger is not the way for me. Anger would eat me up alive.

So, instead, I went miniature golfing. The paths to each hole were winding and hilly. I had some difficulty breathing as I navigated the steps and inclines up to the next hole. The pneumonia is almost gone, and I managed. A huge victory.

Miniature Golf

Miniature golf is peaceful because it makes you slow down. You often have to wait your turn while the people before you play a certain hole. Then there’s patience. You have to be patient as your golf ball continuously misses the hole. (I’m not so good at this game.) Nevertheless, it is a relaxing environment that forces one to walk slowly and take in the beautiful surroundings. The particular course I was on had an abundance of waterfalls and ponds. At times I crossed small bridges with the water trickling below me.

That made me feel better.

But I’m still pissed off at my radiation oncology team.

Have you ever been misled by medical professionals?


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Posted in Breast Cancer | 8 Comments »

Radiation Blues

Posted on: June 21st, 2018 by
6

Flowers

When I finished radiation treatments for breast cancer 17 years ago, I received a beautiful certificate stating that I “graduated” from radiation and that I crossed that finish line. The staff signatures on my certificate and hugs from my radiation oncologist and nurses were amazing. I actually felt like a survivor and my spirits were buoyed up.

Now I realize I never really graduated at all. Unbeknownst to me, I was left back.

I’m currently recovering from pneumonia, the second bout I’ve had in three years. Whenever I get sick, I never get the common cold. Never. I get really, really sick, always involving my lungs in some way: bronchitis, bronchial asthma, and now, pneumonia. I can never get better on my own, but need a doctor’s assistance to hop aboard the wellness train.

My new primary care physician could not understand why, when I went to the ER the day before, the lung X-ray showed I had COPD. In addition, my oxygen level was lower than ideal. In the ER, I was peppered with questions about whether I had ever smoked. I have never smoked, so you can imagine my shock regarding the X-ray.

During my post ER follow-up appointment, my new doctor looked over my history and asked me if I ever received radiation as part of breast cancer treatment. Then he told me — which pains me as I write this — that he believes my lungs were somewhat damaged by the radiation treatments.

Fuck you, cancer.

***
I am one of the lucky ones, I know. I am NED thus far. So many patients, especially those with metastatic cancer, have it worse than me and are more ill than me.

But right now, I’m understandably pissed off about my situation.

During my 17 years of survivorship, I made the best out of my life: I fulfilled my dreams of becoming a mother, artist, writer, and teacher. I’ve had a joyous life in so many ways — filled with love, laughter, friends, and a daughter who is my everything.

Since my last post on exercise, I had even gotten myself into a nice exercise routine, where I walk for 60 to 90 minutes intensely several days a week; exercise makes me feel good and strong.

But I’m anything but strong now. The steroid and antibiotic I received from my visit to the ER were ineffective, so I’m now on a stronger steroid and antibiotic, which seem to be working slowly but surely. Meanwhile, I had to cancel our trip to visit family in New York last week because I’m not well right now. I’ve canceled playdates with my daughter’s friends. I’ve canceled get-togethers with my friends.

I’ve spent 17 years trying to develop confidence in my body. And if, dear readers, you’ve been reading my blog steadily, you know I do my best to take care of myself physically and emotionally.

I may be NED, but having had cancer treatment makes good continued health precarious.

My new doctor wants to get to the root of the problem to figure out why I get so sick. No other doctor has ever admitted to me that having had breast cancer had caused collateral damage. When I am better, he recommends an X-ray of my lungs, as well as a follow-up with a pulmonologist.

Even if nothing is found, which is what I’m hoping for, I have to be honest with myself: the doctor’s intuition might be right — radiation might have damaged my lungs.

I thought chemobrain, PTSD, and osteopenia from this experience would be all that I would have to deal with. Wrong, I was. Naive, I was.

I am angry.

***

Diagnosis and discussing suggested treatment protocols are a murky time. There is so much information that patients have to process and sometimes a plethora of treatment options. And, of course, we patients are facing imminent mortality head-on.

I know that medicine has advanced from 17 years ago, How could it not? But when my radiation oncologist smilingly reassured me that the radiation part of my treatment was safe as all-get-out, I believed her.

When my breast-conservationist surgeon said lumpectomy plus radiation is as good as a deterrent for re-occurrence as a mastectomy, I listened. I initially chose to make the best treatment decision possible for me. I wanted to keep my breast at that time of diagnosis — a time when so much information is given to a befuddled, confused, frightened patient, that one’s head spins.

If I had a crystal ball back then, I would’ve skipped the radiation and gone straight for the bilateral mastectomy. Not a walk in the park, either, but I’m afflicted with the radiation blues.

Disclaimer: If you are a doctor reading this, I’m not recommending that patients simply throw your medical expertise to the wind. Nor am I questioning a particular treatment protocol you are recommending to your patients. And if you are a patient, only you can make the best decisions for your body. My wishing I had chosen a different treatment protocol is an individual desire of mine, but it’s not the right decision for everyone. And, who knows, maybe in time I will realize that I chose the right treatment after all.

So here I am, recovering from pneumonia and am hoping I can hit the gym in a few weeks.

I’m just bitter about my body right now.

Its continual betrayal makes me understand that I’m still reaping the effects of cancer treatments.

In the end, I do not blame my doctors or me for our decision to initially go with a lumpectomy plus radiation. I made what I thought was an educated decision, weighing what treatment would give me the best long-term outlook. The priority was to prevent a recurrence and/or metastasis.

When I get well, I will be seeing a pulmonologist.

In the meantime, I am still grateful to be alive, and that I’m in good overall health. My doctors worked hard to save my life, and they have been so loving and kind. Seventeen years ago, I made the best treatment decision I could — and I must have the courage to live with the consequences of that, without blaming the medical profession or myself for going through with a recommended treatment.

Have you had any kind of damage from cancer treatment? If so, please feel free to share your story/stories.


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