Mom’s Book Club – She was a force

While going through my mom’s book club notebook, I found a small, folded piece of paper.

It turned out to be a certificate for completing a class with a final grade of “B” – Satisfactory.

And it was issued to my mom in 1995.

That’s right, mom took and passed an “Introduction to Computers Using the Macintosh: held at the Carteret Community College.

At age 68.

As much as my brother and I rolled our eyes when Mom couldn’t figure out to reprogram the remote after a power outage, as much as we giggled when she would leave text messages that started with “Dear” and ended with “love mom”, we had no idea that she was trying.

Mom was trying to understand computers. This is the same woman who welcomed a color TV into our family for the first time when I was little. The same woman who wouldn’t let us touch dad’s enormous desk calculator with the glowing red numbers because it “cost an arm and a leg.” A woman who saw incredible and at times unbelievable technological change just in her lifetime.

Even with taking a course, she was always so frustrated with Facebook and the internet in general “what button do I press?” and “How do I share my photos?”

But, as it turned out she was also the woman, who at the age of 68(!) took her butt to a college, enrolled in, and satisfactorily passed a course on computers.

She knew that computers were here to stay and she knew they held incredible information. Mom was thirsty for knowledge on how to tame that wild beast. She wanted to know more.

While she never really mastered the internet beyond reading and sharing things on Facebook, at least she tried. At an age when many people would have given up.

Mom tried.

Mom’s Book Club – The Giver by Lois Lowry

The Giver by Lois Lowry 

The Giver, a Newbery Medal winning book was published in 1993 so I never read it in school. In fact, even though I think a few of my kids might have read it in their English classes, I didn’t read it until I found it on my Mom’s book club list. 

The book follows the life of Jonah, a 12 year old boy who lives in a “perfect society” where there is no hunger, no thirst, no suffering, and as it turns out, no connection with the outside world. Jonah lives in a utopian society where every need is taken care of and there is no reason to complain or question anything. 

It is a perfect society filled with compliant, perfect people. 

Until it isn’t. 

Jonah attends a “job naming ceremony” where he is assigned the job of receiving training from the Giver – a man who holds all of the town’s history through memories from the residents in the town. He alone holds the history. In preparation for his death,  each memory is transferred to Jonah who will eventually become the new Giver. 

All memories open Jonah’s eyes. Some of the memories are painful including physical and mental anguish – again nothing that belongs in a perfect society. 

While we’re on the topic of a perfect society, non-perfect people do not belong. Twins are seen as unnecessary duplication and so one is always chosen to, well essentially, go “live on a nice farm.” 

Babies who don’t thrive are invited to this “farm.” 

As are older people who end up outliving their usefulness. 

It’s all so civilized, until Jonah figures out what the “farm” truly is. 

When he discovers that a toddler his family had been fostering was being prepared for the “farm.” Jonah decides to escape his community with the child. 

In the middle of winter, with not enough clothing, food, or protection from the elements. Remember Jonah is only 12 so we have to cut him a wee bit of slack on this one and besides, it adds to the pace of the story. Jonah must reach his destiny before he and the child freeze to death – which would trigger the end of the perfect society. 

The ending – I wish I had read this in a book club because I’d love to talk about that ending. Was it a hallucination? Was it a memory? Was it death? Was he rescued by a new society? 

Or did he end up at the “farm”?  

I typically like dystopian, end of world kind of books. I’m intrigued by how people might behave (or not behave) when society has failed. Loved, loved, loved The Hunger Games (first book only). Loved The Handmaid’s Tale. 

This one? Was only meh. I mean it was okay and had a great premise, but…. I think it left too many questions.  And let’s just put to rest that I wasn’t captured by this book because It is Young Adult. I have read so many FANTASTIC young adult books. 

I don’t know. Maybe I’m just the wrong audience. Someone gave it an award, so I’m willing to admit that I’ve clearly missed something but, again, bottom line – meh. 

Mom’s Verdict 

I don’t read mom’s thoughts on her book club selection until I’ve read the book and written down mine. I was anxious to see what she thought of this book. Was she as frustrated as I was? 

Imagine my surprise when I found the page and this is what she wrote. 

The title. 

And nothing else. 

Apparently mom was a little underwhelmed with The Giver as well. 

Once again, like mother, like daughter. 

Lessons learned from Long COVID and Cancer

The last three years of my life have been an absolute roller coaster, between long COVID from a 2020 infection that destroyed my gut and caused me to lose so much weight, I actually became malnourished – to getting an invasive breast cancer diagnosis in 2022 that resulted in three extensive surgeries and a hell of a lot of pain (mentally, as well as physically). Put being a state rep on top of this and let’s just say – it has not been easy. I am not as strong as I used to be – that’s a fact I need to accept.  

I’m fortunate, I am in a stable place with both my long COVID and my cancer. Right now, we are monitoring symptoms and will treat any problems that might show up. 

I’ve entered the “waiting game” part of my illnesses. It’s kind of like watching a horror movie, waiting for the next danger to jump out at you. Waiting for the other shoe to drop is not as comfortable as you might imagine. 

I will NEVER say that I am grateful for either long COVID or for the cancer, but like many others with chronic illness, lessons have been learned. My greatest regret with all of this is that it took two pretty awful illnesses to learn these lessons. These are nuggets that everyone should embrace regardless of your health. Somehow we all have to get back to a balanced, meaningful life. 

Here’s what I’ve learned: 

Boundaries 

1. Set boundaries – learn how to say no but also learn how to prioritize. Every day you only have so much energy to spend, use it wisely. Decide for yourself if something being asked of you is worth the energy it will take to do it. This is especially true if you are still working. Figure out what your priorities are and focus on those. 
2. Set goals – why oh why does it take an illness for us to do this? I’ve sat down with myself and have listed day, year and 5 year goals. Some of the things are fanciful and may not come to be (live a season in Italy) but others will definitely come to pass, especially if I am reminded of them on a regular basis. 
3. Listen to your body – when you overdo it (and you will) take care of your body. You only have so much energy to use each day, sometimes you’ll dip into your reserves, like I did when I stood outside in the snow for 7 hours at the polls. The next day was useless for me. I had to cancel meetings and I spent the day laying low, refilling my energy tank. You will learn that naps are not just for kids. Take it easy. If you dip into your energy reserves and then don’t refill them, things are not going to be bearable. Also, let’s talk about pain – you don’t need to be in pain, you just don’t. No one gets a medal for enduring pain. If you hurt talk to your doc – there are resources out there, but you have to ask.
4. Establish a routine – sometimes it’s easy to be overwhelmed by it all. Chronic illness is a lot to take in. In order to not lose my direction, I spend the first few minutes of each morning at my desk writing that day’s “to do” list. Sometimes it says things like “wash dishes for 15 minutes” (not so much energy) other times it includes things like “prepare for a bill introduction” (a lot of energy.) My to-do list is the map of my day – it allows me to know where I am and what still needs to be done. It also allows me to push things off until tomorrow in case I don’t have the energy. 

Selfcare 

5. Watch your diet – it goes without saying that when you have a chronic illness, your body uses a lot of energy to manage it. You are literally in a fight for your life. Feed your body “hi-test” food. Organics if you can get them, filtered water, non-processed food, plenty of fruits and vegetables, and watch the sugar and alcohol intake. Your body is incredible, give it the quality food and water it needs to thrive. 
6. Move your body – look you don’t need to go to the gym every day (if you can, good on you), but you have to get up and use that body of yours. Go for a walk, get some fresh air into your lungs, move those large muscles. It’s not necessary to hit 10K steps every day, but it is important to gently move your body (yoga anyone?) each day. Dance to the song you hear. Do what you can – move as you can. 
7. Sleep – you simply can’t heal if you can’t sleep. I used to have chronic insomnia – took forever to fall asleep and then I’d wake up at about 3 and that would be my sleep for the night. I was exhausted and I hurt all the time. This all ended when I entered the therapeutic cannabis program. One gummy an hour before bed allows me to sleep through the night. That’s when I started to see some healing taking place. If you don’t have access to cannabis, try nighttime tea, limit being online before bed, read something that is pleasant (Sorry Stephen King, I don’t read your work before bed.) Figure out a ritual that works for you. 
8. Calm down – I’m not trying to be dismissive, I get it chronic illness can be terrifying. Trust me, I get it. But just like a lack of sleep will harm your body, so does holding onto stress and fear. Change the channel in your brain –  go for a walk, call a friend, spend time with your pet, do some yoga, read an inspirational book, or connect with a community. Meditation is not easy in this frantic life of ours but it is a literal life-saver, start with 5 minutes and work your way up to a regular practice. 

Connections

9. Family and community are huge – with chronic illness comes a host of attention both good and bad. Some people are addicted to terminal-stories and only want to hear the “gory details”. Some friends will not be able to handle your illness and they will disappear. You will discover who is on your team and who isn’t. Those who remain? Treat them like the treasures that they are. They are the ones who will cheer you on when you need it (as you would for them.) 
10. You don’t have to share everything – this is a big one and one that I tend to blow through far too often. Share your illness details with family and friends who are open to it, but you don’t need to share your medical history with everyone. I am a storyteller, I’ve always been one. I admit, there have been times I have overshared, but I’ve gotten better about this. In the past, I felt I needed to justify why I couldn’t do something, why I wasn’t normal anymore. I have learned. While I do still share a lot (you’re reading this article after all) I now hold back on a lot of my personal information. People may need to know the big picture, but they certainly don’t need to know the details. I don’t have to justify why I can’t do something, saying “no” is sufficient. 
11. Learn how to ask for help – with chronic illness comes incapacity. Your friends and family are there for you. You just have to ask (and yes, I know that it’s ridiculously hard for people to ask for help.) I assure you people do not think you are weak if you ask for assistance, they want to help you, they just don’t know how. At one point in my life, I was living on my own and had just gone through a tough orthopedic surgery that left me in a lot of pain, in a long leg cast and on crutches. I lived by myself and knew that if I didn’t get some help things were not going to go well. On my daily to-do list I put the task of “ask someone for help” every day. Sometimes it was something like, can you carry this bag to my car? Sometimes it was “can you drive me to the Doctor’s office?” or “can you take me to the grocery store?” No one (other than my stubborn self) thought I was being weak. We all have to look out for each other – that’s what community means. 

Mindset 

12. Don’t sink into your illness – there are days, aren’t there? Sometimes, it’s just so overwhelming. I mean we are literally talking about life and death aren’t we? But guess what? You are so much more than your illness. You are YOU who happens to also have a chronic condition. When possible, move away from your illness and do things that matter, read a good book, have a hobby, try a new experience, talk to a friend, spend time with a pet, make memories. Write “I am not my disease” and post it on your mirror. If you can’t distance yourself from your illness, consider going to a counselor – life threatening illness is a heavy load – there are resources that can help lessen that load. 
13. Recognize that life is a gift – I know, this is something that belongs on a Hallmark card BUT IT’S TRUE!!!! It’s too bad that it took chronic illness for me to discover this. I am in the cancer community – already there are some people who were diagnosed at the same time as I was, and in some cases, after I was diagnosed who have already passed. Do you know how incredibly fortunate I am to be able to wake up each morning? Appreciate and do what needs to be done today. There are no guarantees, we have today, no one, absolutely no one knows about tomorrow.

Mom’s Book Club – Security Question

Security Question – Favorite Actor 

In my mom’s book club notebook, she had included a small piece of paper with her responses to some online security questions. 

Mom tried, as did Dad, to embrace computers, but it was just too much of a leap for them. I remember the first piece of technology to enter our house. It was my dad’s calculator. Large, black and it displayed glowing red numbers that seemed to glow out of the dark depth behind. 

We were told in no uncertain terms that we “WERE NOT ALLOWED TO TOUCH DAD’S CALCULATOR.” It was not a toy, it was ridiculously expensive, it was a tool that allowed my Dad to balance our family checkbook and keep everything in balance. 

It was a tool, NOT A TOY!!

All I knew about it was that my brother showed me that if you entered the number 8, followed by two 0’s and then another 8 – it spelled the word “B00B.” 

This tool was clearly both magical and naughty. 

In my parents’ lifetime, they went from getting this incredible calculator tool that made their lives easier to color TV (I remember the day we got our first color TV – we watched The Red Balloon and I knew that another piece of magical technology had entered our lives). My parents got a microwave, washers and dryers became “smarter”. TVs ran with the use of impossible remotes that forever needed to be reset (lost power? Call my brother, he’ll help get the remote working again. Again and again.) Bracelets counted their steps and books could be read on a flat screen that you held in your hands. 

My parents adapted but like many of their generation, they didn’t fully “get” the internet. 

Each text message from mom began with “Dear Wendy” and ended with “love mom.” 

The same went for every voice message. 

Every. Single. One. 

Mom, you don’t need to say that, I’d tell her, it’s understood. 

But it’s the right thing to do, she’d reply. And by the way, she’d add, stop using “Thanks” and go back to using “Thank you”, it’s more respectful. 

Mom would get lost in the internet. She understood email and Facebook to some degree but ordering online was beyond what she could do. Stream a movie? Never. 

I constantly got texts from her like “how do I save my photos?” and “How do I share them?” 

That commercial where the older woman is “sharing” her photos on the wall with her friends (that’s not how it works) speaks the truth to many of our older members.  

Still mom tried. She dutifully signed up for different apps and she kept track of the relentless security questions. 

Which brings me back to this tiny slip of paper. On it she wrote: 

Security Question – Favorite Actor 

And under this question she added Paul Newman. 

Mom!!!!!! 

I had no idea. What I knew about Paul Newman was the following: 

• He lived in the next town over – occasionally we’d see him while shopping
• I and just about everyone else in my class had seen Cool Hand Luke (1967) – we learned that women’s breasts were something that drove men crazy and we also learned the line (that I still use today) “what we have here is a failure to communicate.” 
• I had to be told that Newman was the dark haired one in Butch Cassidy and the Sundance kid  (1969) (didn’t recognize him from Cool Hand.)
• Recognized that Newman was funny and had great chemistry with Redford. 
• Thoroughly enjoyed The Sting (but didn’t like that mustache) 
• Newman did other movies, other projects. 
• Then he created a company that made food where the proceeds went to charity. We constantly had Newman salad dressing and popcorn in the house.
• He raced cars and drank beer. 
• Seemed like a nice enough guy. 

But nice enough to be mom’s favorite actor? Remember this was before VHS, if mom saw Newman in a movie then she had to go to the theater or watch it on TV. She had to be ready for Paul to appear, not the other way around. 

What was it about this guy that caught mom’s attention? 

I found a short “Hourly History” of Paul Newman at a thrift store so I purchased it and settled down to read about this man who had caught my mom’s respect. 

Newman was born in 1925 (Mom was born in ‘27) in the middle of a snowstorm. Clearly, this was a being that already came to earth with a story to be told. 

He grew up in Ohio in the shadow of his father’s sporting good business. It was understood that Paul would someday take over the business. Newman had other plans. 

He went to college, followed his passion which was acting. Enrolled in the Navy and missed out on being a pilot because it turned out he was colorblind. 

Got married young, had kids and worked his way through television and movies. Found true love (while still married to someone else) got divorced, remarried, had more kids. 

Busy guy. 

For the most part, he was as handsome as they come and he was talented – a brilliant combination in Hollywood. 

But here’s the kicker that I didn’t know about, but apparently Mom knew. Newman was very involved in politics. 

AND HE WAS A DIE-HARD DEMOCRAT. 

He believed that people should have dignity at work. Kids should be fed. People (especially children) with illness should have hope and treatment. 

And joy. 

Mom was a democrat. Dad was not. 

When she was in hospice, my mother told me the story of her future brother-in-law asking to speak with her before she married my step-father. 

It was bad enough that Mom wasn’t a Catholic, but to be a democrat? Blasphemy. He asked my mother to not marry my future step-father. 

Mom pulled a bit of what I now recognize as a Newman move and basically told my now-uncle to “pound sand.” She had other plans which included not only marrying my step-father but absorbing his two kids into the marriage. 

This is the same woman who when confronted by the elementary school principal in yet another meeting of “what are we going to do about Wendy?” told them that willful children, especially girls, are the ones that go places and get scholarships. She told them that absolutely nothing needed to be done “about Wendy.” Leave her alone and let her thrive. 

I got a full scholarship to the University of Connecticut. 

Mom was right. 

These are the things you learn about your mother when you are an adult. That your mom really had your back. That she was political in a quiet but determined way. That she respected talent and drive.  

And that like we all do, your mom learned from role models –  how to fight for what is right, how to persist. 

Then she did what all good teachers do, she passed on what she learned, so that the knowledge would not be lost to others. 

***

 Hi mom.

Mom’s Book Club – Skipping Christmas

Skipping Christmas 

This book was not on my mom’s Book Club list but I have given it an honorable mention and am including it here with her other books.

I usually don’t like action thrillers (which John Grisham is very good at), but I am a SUCKER for Christmas stories (Hallmark movies on paper). In fact, it’s a yearly tradition for me to ship the Christmas books I’ve read to one of my sisters in Texas who then shares them with her friends. 

In 2001 I couldn’t resist picking up a short book called Skipping Christmas. I sat down to read it and I honestly did not stop laughing until the last page (when I wiped a tear or two.) 

You’ve probably seen the movie “Christmas with the Kranks” (and whoever came up with that title should have been fired) which is good – excellent casting, but it’s nothing like reading the book. 

I enjoyed this book so much, that knowing my mom liked books, I sent her a copy. After reading the first chapter, she realized what a gem it was – parents trying to get free from their kids, parents trying to make their kids happy by having the perfect holiday, parents who know the importance of memories, that she and my dad decided to read alternating chapters to each other in bed. 

I recently reread this book (thanks mom) and while still funny, it hits a little different now that we are (almost) empty nesters, definitely bittersweet. But the humor and love (I will move mountains and earth for my kid) still shines through. 

So while this one wasn’t on my mom’s official list, while reading it, I kept thinking of my mom and dad giggling together in bed while enjoying this story. 

And every time I think of that – I smile. 

Mom’s Book-Club 1/59 Christmas Letters

Mom’s Book-club 

This weekend, I found my Mom’s book-club notebook where she took notes on 59 books before she passed. I’m going to read and in some cases reread each of the books and see what I think about them compares to what Mom thought.

It being mid-November, I decided to start with some of the Holiday stories from my mom’s list. First up was Christmas Letters by Debbie Macomber. 

Although I do enjoy a good Hallmark Christmas movie every now and then, I have to say that Romance is not necessarily my favorite book genre. Here’s how they all seem to go: 

• Young, independent, intelligent woman  with a job and friends is moderately happy BUT something is wrong in her life and she just can’t put her finger on it, but it’s definitely not a man missing from her life. 
• She gets introduced/runs into someone who is initially not her type. 
• She doesn’t like him. 
• He doesn’t like her. 
• There’s a little conflict. 
• Until they are thrown together by an event (play, party, date, baseball game…) 
• Turns out she DOES like him after all. 
• Turns out he DOES like her!
• They spend time together until a relationship disaster happens (complete with misunderstandings) 
• Looks like all may be lost. 
• But then things are seen from a different perspective and it turns out all is good again. 
• Oh NO! Another conflict! 
• Truly looks like all is lost. 
• She apologizes. 
• He apologizes. 
• Wedding bells! 

Extra points for having this all take place during the holidays. 

Christmas Letters does not disappoint. It pretty  much follows that universal template. Easy, cute, enjoyable read. 

K.O. is looking for a job that will utilize her PR skills. In the meantime she writes Christmas Letters for others as a way to get some money. Her skill is in turning a horrible year into a good one by …. stretching the truth just a bit. 

She meets a man who is an author on Childcare. He believes children should not have boundaries and that *gasp* parents should not indulge fantasies like… Santa Claus! 

Hijinx and hilarity ensue. 

In the end, both are looking for an authentic life based on no lies. 

Predictable and cozy like a warm blanket. 

Some minor notes on the book: 

• On their first date – a celebrity chef makes the new couple their dinner. The entree was “Grilled Scallops with wild rice and tiny Brussel sprouts with even tinier onions.” 

I must be getting older because my first thought? That’s taking quite the chance on a first date with a gassy meal like that. 

• I appreciated the metaness of this line toward the end of the book – “This man did things to her heart – not to mention the rest of her – that even a romance novelist couldn’t describe.” 

• And it took until quite near the end, but I found what I was looking for – “No,” she said. “Love should come first.” She stared into his eyes. “Love changes everything, Wynn.” 

And there you have it, the mantra of all Romance writers. 

When you come down to it, it’s not such a bad basket to put all of your eggs in. 

What Mom Had to Say

Funny Romantic Comedy 

Katherine O’Connor writes Christmas letters for other people

Dr. Wynn Jeffries, renowned child psychologist – “Free Child” recommends “Bury Santa under the Sleigh.” 

Argue a lot. They disagree in almost everything but still love each other. 

LeVonne – neighbor across the hall. 

Max Jefferies – Wayne’s father 

****

Mom didn’t write a lot about this book. I have some theories. 

First, I grew up in a blended family of seven (yes seven) kids. Fighting was daily but was not tolerated. If we fought about what channel to watch, she’d turn the TV off. If we fought about something, anything, we had to figure out how to resolve the issue – without her help. 

And if we couldn’t figure out how to get to peace, my dad’s threat of “the belt” always loomed large. 

Today that seems cruel and a clear example of bad parenting, but man was it effective in my day. 

If we wanted to know what was for dinner – we’d be told “food, and you’d better have your hands washe for it.” 

The premise of this story is that the child psychologist who was raised by hippies, wants no restrictions on children. They are the ones in control. The ones who decide what they want for dinner, what time they want to go to bed, etc. 

I’m quite certain that my Mom’s eyes were close to rolling out of her head when they were discussing this book. 

Nope, we had bedtimes, dinner at 6:00 pm, Sunday morning cleaned shoes, and we were allowed to play in the neighborhood, but when she rang the porch bell, we’d better find our way back home. Quickly. 

This is a cute story, but I’m sure my mom was biting her tongue at the ridiculousness of parenting a “free child.” It’s just not something you can do when the kids outnumber you (by more than double.) 

As a mother of six and someone who put into action the belief that fighting among my kids was a transgression too far, who got dinner (no requests) on the table at 6:00 (and you’d better have your hands washed as well as be wearing a shirt), who had bedtimes (non-negotiable) for the kids, and yup, who called my kids home with a porch cast-iron bell, I’ve got to say, I’m on team Mom.

Acknowledging Cancer Milestones

I’m never going to ring the Cancer bell located in treatment wards.  

Not only because I have not received chemo or radiation therapy, but because I don’t believe in tempting the fates. 

And also because I know that that’s not the way cancer works, it doesn’t care if you think it’s gone or not, it’s just there. Cancer is not well known for playing fair. 

So I will never ring the bell or say that I’m cancer-free, because I just don’t know. If I had cancer once (and I’ve actually had it twice, I’ve had a skin cancer tumor removed) it can certainly come back. There is something about my body that is unbalanced enough to let cancer grow in it. 

It could happen again.

And again and again. 

But this doesn’t mean that I can’t celebrate milestones. 

I have set up a wellness altar in my office. On it, I have inspirational tokens that friends have given me. 

I also have my strong-women celebrations for the events that I find important on this journey. 

Wonder woman – This kick-ass lady joined my altar when I was 6 months out from diagnosis. Being a Water Warrior (WW) I have long had an affinity for the other WW. Sadly there are some women that don’t even make it to the 6 month point. 

Luisa Madrigal – the strong sister in Encanto. I included her not so much for her strength but for that song where she confesses being tired at ALWAYS being the strong one. It has to be done, but geesh, sometimes it’s exhausting always being so strong. She joined Wonder Woman 6 months after my mastectomy. Again, it’s a milestone that some women never see. 

The Goddess Athena – Marc and I went to Greece and got immersed in mythology. I learned about Athena who was one of the most intelligent and wisest of the Greek gods. She was also good at war strategy and giving heroes courage. It seemed appropriate to add her at the one year after diagnosis milestone. 

Cancer management needs strategy and wisdom.

At this point, the only milestones I care about going forward will be on the year’s day of my initial diagnosis in May. 

May 19th. 

While I may not ring a bell, I do have hope of eventually running out of space on my altar of inspiring strong women. 

The importance of having someone in your corner

Not everything was/is horrible in my cancer journey. 

I have worked very closely with my primary physician. He has guided me through chronic Lyme disease and then Long Covid (which unfortunately also made my Lyme symptoms flare – great fun.) We have always worked as a team, I’ve brought him books and articles and he has made suggestions on things that I could try based on his experience. He’s also pushed back when he thought he needed to – “before we try that, let’s take a look at this.”

He’s the kind of doctor who sees you as a full member of your health team (sounds obvious. but so many docs see themselves as Gods over the minions.) 

When I got my diagnosis of cancer, my doc knew it was going to be tough. He knew I was a fighter, but he also knew I’d be questioning everything. 

He knew me. 

When I had my first appointment with him as a “cancer patient” (you seem to lose all other labels once you are diagnosed with cancer) he turned to me and said “Cancer is a family disease. We need to make sure that your family is supported and that you get the support you need.” 

What an incredibly simple, but powerful statement. 

He knew I was in for a rough ride, he didn’t minimize it, instead he let me know that he was here for me. 

For the most part, I stood on my own (and when I say my own, I mean with the support of an incredible community of friends.)

But when my first surgeon wouldn’t prescribe pain meds for complications following surgery (oh, we don’t prescribe pain meds *after* surgery) my doc called her cruel and wrote a script. 

And when I couldn’t control my anxiety before my third major operation, explaining that my head understood the necessity of more surgery but that my heart was freaking out because it knew what was coming –  (let’s call it what it really is Cancer-PTSD), he prescribed a mild anti-anxiety medication. I didn’t use much of it, but just knowing it was there to use if I needed it made all the difference in the world. 

His ongoing care of and for me, has made a HUGE difference in this hellscape called cancer. He empowered me to continue to fight and continue to push back, all the time with me knowing that he was there to catch me if I should fall. 

May everyone who is diagnosed with cancer be lucky enough to have someone who has their back like this. 

Bad girl, bad girl.

I made earlier reference to the culture of misogyny in breast cancer. This is one of the things that really surprised me, after all, you’d think that a field of medicine dedicated to women’s health would be, well, empowering of women and their choices. 

Nope. Not at all. 

Oh sure, they pretend to be pro-women – there’s an awful lot of pink everywhere, but personal empowerment? No, they want you to be a good girl – shut up and don’t question anything. 

My first few (and not last) experiences with this started at the breast clinic. After an examination, the doc sent me to get a mammogram. 

The mammogram technician apparently found it impossible to talk to me without using a baby voice. Apparently if they suspect cancer, you lose all identity as an adult woman with any kind of autonomy. In their eyes you become a child, someone for whom others must make any ongoing decisions. 

I addressed the tech and told her that I was fine, she didn’t need to coddle me or treat me like a baby. 

She took umbrage and the temperature in the room quickly plummeted. 

Good girls do not push back, they behave. 

At the same clinic, after I got the call from the doc confirming my biopsy report that I did indeed have cancer, I was transferred to the nurse to answer any questions. 

“Is there anything I can do for you?” She asked me. 

“Yes, I said, just don’t give me any of those fucking pink ribbons.”

She said “What?” 

And I replied, “don’t give me any of those stupid pink ribbons.” 

Later in my medical notes she wrote “patient used inappropriate language and once I redirected her, she was appropriate.” 

Jesus Christ, I had just been told I had cancer – my entire life had just been changed with one phone call – did she want me to express rainbow and lollipop platitudes? 

I mentioned this episode to my primary doc (whom I truly respect and who is male) and he said that women are the worst when it comes to belittling other women. That they had taken a page from male behavior and that saying patients behaved “inappropriately” is the new “hysteria of yore.”

He said he sees it over and over.

Men are allowed to swear, in fact if my husband had gotten a cancer diagnosis and said “what the fuck?” I’m sure that no one would have blinked. 

But women? Delicate compliant good girl flowers must toe the line. 

By branding me as an inappropriate patient, there was now a red flag in my record. 

This one is not a good girl, she’s an angry bitch. Look out for her.

I have seen this so many times before. I’m a writer. I use language to express myself. I have been called out mostly BY WOMEN for my “inappropriate” language. Often these women are hypocrites who use the same language, but “WENDY USED IT!” It’s an easy way to align yourself with the male culture and to acceptably attack other women.

BAD GIRL. 

But here’s the thing, when I’m angry, or frustrated, or want to make a point, I swear – it’s the right thing for me to say at the right moment. Get the fuck over it. 

I should have left that clinic that day, but I didn’t know. I didn’t know how manipulative they were. I didn’t realize that I was bumping up against a male culture in women’s health care.  (spoiler alert: I soon learned and eventually did leave – thank God.) 

But you have hair

Disclaimer – this is my own personal journey. I am in no way advocating or suggesting that people follow the path I am taking, instead reach into your heart and discover the directions for your way forward. 

But how can you have cancer if you never lost your hair? 

Believe it or not, I get that a lot. After all, we were raised on after-school movies where Mary’s mother goes through cancer, becomes bald and frail, but thanks to Mary’s lemonade stand Mom gets better and all is well. 

It’s either that or the Disney movies where the mom dies in the first few minutes and Mary goes on to discover her own personal power. 

Either way, we have pre-formed ideas of what cancer should look like. 

And my cancer does not fit into any of that ideal. 

When I was first diagnosed, I assumed that chemo was going to be involved. While I didn’t have any experience with breast cancer, I had some friends who had and I KNEW that chemo was a standard part of the treatment. 

But then I started reading. And then I read some more. 

And then even more. 

And I started doubting that the best way to treat my cancer was to simply check boxes off of a standard of treatment cancer list. 

My cancer is a grade 1 (slow growing), ultimately the tumor was relatively small, and there was no evidence of lymph node involvement. 

I started coming up with my own plan. 

I opted for a bi-lateral mastectomy (there was lots of pushback on that, but I was adament. My breasts were trying to kill me, I wanted them both off.) 

I also did not want any lymph nodes removed during surgery. 

SACRILEGE!! 

My biggest fear was lymphodema. Take my breasts and ovaries away, you can even take my legs, but I need my hands to write. I wasn’t willing to take any unnecessary chances. 

I met with an oncologist who wanted me to do chemo prior to surgery. I decided against it. I didn’t think it made sense (again for me.) 

I met with a radiologist who wanted me to have 6 weeks of daily radiation post-surgery – followed by a few BURSTS. The general consensus is that if you have a mastectomy you do not need radiation. Think of having it as insurance, I was told. I decided against it.

As it turned out, post surgery, the tumor was much smaller than anyone had thought and I had clean margins – radiation was taken off the table. 

After surgery I went back to the oncologist. She had ordered an Oncotype test and I was there for the results. This test scores your cancer on a scale of 1 – 100. Anything above 25 means that chemo would most likely be more helpful than harmful. Anything under 25 means that chemo would most likely be more harmful than helpful. 

My score was 14. 

So she couldn’t advise chemo (although she did talk about it as “insurance” – a word that I’d discovered is used often in cancer treatment.) Instead she started talking about estrogen blockers. But because I have had dozens of bone breaks due to a car accident when I was younger, I had concerns about bone pain – a common side effect from this medication. 

I had also had surgery that removed my ovaries and while estrogen is created by other organs, I had definitely reduced my hormone load with that surgery. 

Not a problem, she said, we’ll put you on the other version. The other one being the one that is used in pre-menopausal women (which I am not.) It felt like it was more important for her to check that medical box off the list than it was for me to have medication that truly fit my needs. I declined.

“Well then there’s nothing I can do for you.” I agreed and I have never gone back. I have breast cancer, I do not have an oncologist and I’m absolutely fine with that. 

So here I sit with a history of cancer that caused me to amputate several parts of my body. I get blood work done on a semi-regular basis to check for tumor markers and I pay attention to my body for any strange symptoms. I do not do scans. 

I understand that I am taking a HUGE chance. Cancer does not care what you think and it certainly does not play fair. 

This is what feels right for *me*. 

Things might change in the future, but for now, I’m okay with my decision to treat my cancer with surgery. 

This doesn’t mean I don’t take “self-protective” actions. I watch what I eat, I drink lots of water, get exercise (walking) and take supplements (one is an estrogen reducer, DIM, that has no side effects and has proven to help keep breast cancers under control.) 

Have I made the right decision? Who knows, I may be one of the luckiest people on the planet earth, or I may be one of the dumbest. 

But for now and for the foreseeable future, I remain with hair and hands that continue to type. 

And I can live with that.