I’m Still Here

My birthday was July 3rd. I remember when I was young, I used to think I was just like the astrological sign Cancer. I thought it was fitting that I was born under this sign because I have so many of the characteristics. The irony is not only was I born under the Cancer sign; my body literally became a cancer two months after my 39th birthday in 2015.

Photo credit: horoscope.com

I think about my birthday differently ever since my diagnosis of stage IIA invasive lobular breast cancer. There’s an additional layer of heaviness with each year that wasn’t as thick pre-cancer. I can’t help but think about all the cancer warriors who didn’t get to live to their next birthday. Once you’re inducted into the cancer sorority or fraternity, it’s impossible to not be plagued by survivor’s guilt.

Why am I still here? Do I have an invisible expiration date stamped on my body?

I’ve seen so much death in cancerland. Some of us have experienced wrath from a few of those who are metastatic (stage IV) who get triggered when we complain about something in our lives post-cancer. “At least you don’t have stage IV and not dying,” is what some will often say. It’s important to not compare our cancer experiences with others because you have no idea what all they have been through up to this point. While it may not be stage IV cancer, there are other things experienced that are uncertain, frustrating, and could eventually become deadly.

What they don’t know is my story and how I nearly died at birth.

What they don’t know is how I sick I was as a child, constantly fighting off infections and hospitalized multiple times.

What they don’t know is how I’ve known I would get cancer since I was 18 but just couldn’t be sure of when and what type.

What they don’t know is the grief I feel daily over not being married and having a family.

What they don’t know is all the death I’ve seen from cancer before I was even 12 years old.

What they don’t know is my mother has had a rare blood cancer for the past 20+ years and it’s currently progressing.

From the moment I was born three months early, I have been fighting to continue living in this world. It took my parents eight years to conceive. I am an IVF baby. My mother was diagnosed with ovarian cancer during the pregnancy. The doctors wanted her to have a therapeutic abortion because they said there’s no way both of us would survive this pregnancy. Their prediction was one of us or both of us would die.

When I made my grand entrance into the world, it wasn’t filled with excitement. It was filled with urgency and worry that my mother and I would die. My mother started hemorrhaging to death which is why an emergency cesarean was performed. Everyone was panicked because I wasn’t supposed to be born until the last week of October, but here I was coming out in July.

I was born 1lb 5oz at St. Luke’s Hospital in Davenport, IA. My parents didn’t even get to hold me because I was immediately rushed into ICU because I wasn’t breathing. My lungs had collapsed. Once the doctors got me breathing, I began to have grand mal seizures. After two months in the ICU, they discovered I had a benign fibrous histiocytoma in my right leg which was surgically removed. According to Google, fibrous histiocytoma is a benign soft tissue tumor that may present as a fibrous mass anywhere in the human body.

My body experienced trauma from day one and has never stopped. While I’ve never been surprised that I got cancer, I was surprised that I got in my late 30’s. The trauma continues with permanent damage and scars from cancer treatments and eight surgeries. It makes sense that I have fibromyalgia, too. I honestly believe this would’ve occurred later in life but was triggered thanks to chemo. I’ve had pneumonia twice as a child and twice as an adult.

The list goes on and on.

The physical and mental pain goes on and on.

So, why am I still here when others have died too young or have families who need them? I honestly don’t know. It is a shame that it took getting cancer to shake me out of simply existing to truly start living with purpose. The past year of my life was a little more difficult than I was prepared for, but my inherent resilience keeps pushing me forward, even when I don’t necessarily want to.

While I wait for my invisible expiration date to appear, I refuse to give up. I don’t to die on a bed of regrets. The song I’m Still Here by Sia perfectly sums up my thoughts at this moment because

I

AM

STILL

HERE.

Until next time,

Warrior Megsie

How Dark Am I?

I have repressed memories from childhood of the racism I’ve experienced. It’s the memories of the self-hate that seep into my mind. There are so many stories to share of when I first noticed I was different. I don’t mean quirky different. I’m mean when I noticed I was a different color that wasn’t found in my crayon box.

There was a time I loved the outdoors. I could lay in the sun, hike, play tag or kickball with friends all day. I loved soaking up the sun and smelling it on my skin.

Many of my white friends have always complain about being too pale or pasty and needing to tan. I wanted to be like them and tan too, but I was already brown. Did I really want to get even darker?

Me in my teens at the beach

I cringe even writing this. The self-hate is so evident. That fact I’m only recognizing this now shows how deeply rooted these feelings are in me.

Then I had another thought. If my white friends ever woke up my skin color, they would lose their ever-loving minds. Isn’t that what they want though? To be darker? As they want to get darker, I’ve always wanted to get lighter.

Many white people, even in 2020, don’t realize that black people of any shade can get sunburn just like them. I remember the first time I got sunburn when I was a teen and some of my white friends were fascinated by the fact my neck, shoulders, and back turned red and then peeled…just like them. “I didn’t know black people could get sunburn,” they would say. When I think back to that moment, I wonder if I purposely laid out in the sun until I burned so I could show I was just like them – them being white.

Now, I’m rarely in the sun. If I am, I always have a hat and sunscreen on. I’ve even used skin lightening cream in the past, which obviously didn’t work.

I remember when I was selected to go to Georgia Girls State at Middle Georgia College in Cochran, GA in the summer before my senior year of high school. I was so excited. There was a time I thought I might major in political science. My roommate was a black girl who was darker than me. She was kind of standoffish at first. I was slightly uncomfortable because I hadn’t been around many other black girls, let alone have one for a roommate. I acted like my usual zany self and eventually won her over. She kept saying I was “different,” but it didn’t sound like a compliment. She even wrote it on my banner at the end of the week. It felt more like she was saying you don’t act like a typical black girl, whatever that means. I’ve experienced this a lot in my life, even now.

Roommate’s comment – she spelled my name wrong. 🙂

Well, I was selected to take part in the mock trial. It was a big deal. They only selected three students to be the defendants and I was the only black one. I got to work with a judge, district attorney, defense attorney, chief of police, and a G.B.I. agent (Georgia Bureau of Investigations) to prepare for the mock trial. We even got to go off campus to film “the crime.” The jury was made up of students. I was the innocent friend who happened to get caught with the other two defendants. I had to tell the jury how I knew the defendants and what we were doing before “the crime.” The mock trial was held in the auditorium where the rest of the general assembly (all the students) were in the audience.

GA Girl’s State Mock Trial Cast – My given name is Megan Hester

I said we were at the beach just laying out before deciding to leave. When I uttered that sentence, I heard snickers from the black girls in the audience. When the mock trial was over, some of them asked why I would be laying out in the sun to get darker. They said, “Black people don’t do that.

That’s how deep systemic racism is in America. As blacks, every single one of us are aware that during slavery the light-skinned slaves got to stay in the slave owner’s house while the dark-skinned slaves had to be in the field. So, we inherently know that being lighter is seen as less threatening and aesthetically beautiful.

I continue working on my own Mixed Fragility and admit I’m struggling. Each time I look in the mirror, the first thing I notice aside from the chemo curly hair is my nose. It’s large. It’s not dainty like my mother’s. I’ve always compared my features to my mother who is biracial. We look nothing alike, yet white people always say we do because blacks often “all look alike” in their eyes. When I look at one my favorite pictures with my mother from when I was 10 years old, the difference is striking. I’ve always hated that I favor my father’s side who are dark-skinned and not my mother’s side.

10 year old Megan and Mother

What shades are considered light, medium, or dark? Where do I fall in the spectrum? I have a visceral reaction when someone in the black or white community calls me dark. I immediately take it to mean I am not considered attractive. How warped and heartbreaking is that? Will my exact skin color ever be seen in our society as beautiful and desired?

Just how dark am I?

Me on Wed 6/24/20

Until next time,

Warrior Megsie

Layered Loneliness

I think back to the start of my breast cancer experience five years ago. The struggle to just survive the toxic treatments, multiple surgeries, blood transfusions, and complications post-treatment makes me wonder why am I still here? I was initially filled with such hope once I was officially declared as no evidence of disease – I refuse to say cancer free.

I am now infertile and in medically induced menopause well before my time.

I have fibromyalgia.

I have neuropathy in my hands and feet.

I have a bulging disc and slight tear near the nerve in my back.

And I discovered in January I have two benign lesions on my spine that need to be monitored.

I get so angry when I hear the following comments:

  • “Just be grateful you’re alive.”
  • “Cancer doesn’t define you.”
  • “Be happy you’re single.”

As I listened to various cancer conferences this month, the bulk of the female presenters often begin their talks with how they fought cancer to be there for their kids. Do they ever think about how crushing that is to hear as a single cancer survivor? I don’t mean anyone who divorced during or after treatment. I’m talking about the survivors like me who were single at the start of diagnosis and still single post-cancer.

When I think about it, I honestly didn’t have much motivation to “fight” to survive my cancer treatments. The main reason I did was for my beloved mother and cat Nathan (Natey) Edgar. That’s it.

I am single.

I often feel very alone.

I’m an only child.

My life post-cancer still feels quite isolating.

I don’t have many local friends. I know a lot of people locally, and have many acquaintances, but there is only one who I talk to weekly and would hang out with once a month before the pandemic. The bulk of my friends are out of state and in other counties. Many of them are married with children, or they have a significant other. I don’t really know many single and childless people – male or female.

I always hear that I should just get out there and date. Any guy would be lucky to have me. Well, I would say that would be a true statement, but my color makes dating tough. That’s a whole other story for another day. Now that I am in menopause and in chronic pain 24/7 makes dating feel impossible. The only time my dating life was pretty active, and fun was when I lived in LA in my early to mid-20’s.

I’ve tried so many different medications, surgeries, and supplements to help ease the pain, but nothing has fully worked effectively. What people don’t understand about fibromyalgia is being touched can cause horrific pain. It makes sleep difficult. It makes exercising difficult. It makes simply existing difficult. Then add permanent neuropathy in my feet makes walking difficult.

When I did try dating a little a year post-cancer, I remember one guy asked why I was walking so stiffly. I thought I could hide how painful it can be to even step onto a sidewalk or go up steps. I didn’t bother saying it’s due to cancer. Instead, I said I was sore from working out earlier that day.

How can I even think of dating when I literally cannot hide the physical pain?

Are there any single and childless cancer survivors who are also only children? It’s like lonely, on top lonely, on top of lonely. This is the one time being the only one isn’t an advantage.

Until next time,

Warrior Megsie

We All Bleed Red

My right hand is currently inflamed and burning, so typing is hard at the moment. I decided to take this opportunity to record a message for you instead. So, here is a short message from me on what I’m thinking about right at this moment.

Until next time,

Warrior Megsie

Mixed Fragility

I feel like I’ve been hit on the head, but instead of being knocked out, it has woken me up. I’ve been uncomfortable being vocal about the racism I see and have experienced. Yet, I must push through it and not remain silent. You might be wondering why I feel uncomfortable. Well, I’ve finally been able to put it into words for you.

According to Dictionary.com, white fragility means the tendency among members of the dominant white cultural group to have a defensive, wounded, angry, or dismissive response to evidence of racism. This term is still new to me, but it is dead on.The more vocal I become about racism, the more I see this white fragility in some of the people I know in real life and those online who I only know on the surface.

Yet, I am struggling with what I call my own mixed fragility. I made up this term because it seems to fit my situation. This mixed fragility is my own tendency to be defensive, wounded, angry, or dismissive of the black community due to my own self-hate of not wanting to be associated with all that it means to be black in this country because it would cut me off from being accepted in the white community.

Whew. It was extremely difficult to not only acknowledge this but put it into words.

I’m sure a number of white friends who actually KNOW me are wondering why I have all this anger lately, and being so vocal about being black when I’ve never uttered a word of authentic support about the black community in the past. And you know what? I feel sick about it.

Let me share MY history of growing up in Macon, GA. I come from an educated family on my mother’s side where both grandparents were college graduates. My parents were married for 9 1/2 years before they divorced. Both are college graduates with master’s degrees and my mother has two Ph.D.’s. I was raised Catholic. I was often the only black person in my classes at St. Joseph’s Catholic School until I got older, then I was one of three. My mother and I were often the only black people to attend St. Joseph’s Catholic Church. I took ballet. I was heavily involved in community theatre where again I was often the only black person in the cast.

I did not have a lot of black influence growing up outside of my family. When the black kids I would meet while at summer camps would tease me for acting “too white” and for being a “sellout,” you can bet I felt anger and resentment. I wasn’t trying to be anything other than myself during those supremely awkward years. My mixed fragility would think why are these black people making fun of me for doing what I enjoy doing, and reading Anne of Green Gables, and for being naturally dramatic? The constant “you talk white” comments that plague me to this day hurt. I was immediately judged, so I judged back. Both parties were wrong.

I would feel such hostility by certain black kids (not all) in high school and the few I encountered in college in upstate NY. Those who went to Mount de Sales Academy should know of the people I’m referencing. Back then I would often think, “aren’t we at the same private Catholic high school?”

I was the only black cheerleader at The College of Saint Rose in my sophomore year. I would hear some of the black kids jeering at me from the benches saying, “quit acting white” and “cheerleading is for white girls.” I heard those comments at every blasted basketball game for that season and refused to be on the team the next year because it was so hurtful. I can only paste a smile on my face for so long.

The constant feeling of ‘you’re not one of us’ has followed me like a dark shadow. How can I love myself when those who look like me reject me? What’s wrong with being different, quirky, and extra? Why should I have to talk and dress a certain way to be accepted when that’s not how I grew up?

So, I naturally gravitated to the white community. I’ve always heard from a lot of white friends and acquaintances over the years that they don’t see my color. I honestly thought that was a good thing because in my warped mind I thought “good, they see me as white like them.”  I would often feel so accepted until I wasn’t invited to some birthday parties or sleepovers because their parents didn’t allow blacks in their homes. A guy who had been my dance partner in multiple musicals at Macon Little Theatre wasn’t allowed to go to prom with me because his parents said, “it’s one thing to be on stage with a n***er, but quite another to be seen out in public with one.” I’ve been followed in stores like Old Navy and Pier One because I must appear threatening with a damn fascinator in my hair or a purse that matches my shoes.

As an adult, I still do not have a lot of black friends. I have met a lot of black people over the years and within the cancer community, but I only have two who I consider real friends. One is male and one is female. Why? I’m still made fun of for not knowing about certain things that are staples within the black community like trap music for instance. I had to look it up and still don’t quite get it. I didn’t grow up with it.

Once tRump conned his way into the White House, I really started to feel the effects of his bigotry instantly. He and his cronies have given a green light to come out from the shadows and be open with their hate for blacks, POC and LGBTQ. I started to feel more hostility from whites than from blacks now. You can read my original post from last summer It’s a Troubling World about the white woman with her son who was misbehaving pointing at me saying, “See this black woman? If you don’t be quiet, she will ram her cart into you.” I remember when I posted this on my social media, I had so many white friends saying I should’ve said this and that to her. They just couldn’t understand why I remained quiet. Well, let me cue in that unhinged racist Amy Cooper and how she falsely escalated and accused the black bird watcher Christian Cooper of attacking her. I hope now my white friends will understand that’s why I kept quiet last year. I knew if I had said anything, that white woman could’ve called the police and falsely say I was threatening her and her kid. Only one person would’ve ended up in handcuffs or dead…me. The other white woman behind me in line witnessed the entire thing and said nothing. Nothing.

Again, some of my white friends told me they would’ve said something, or they couldn’t understand why I was so upset. I wonder…would they really have said something? Would they really have stood up for me or even a black stranger? Would they have gotten out of their comfort zone for another? Also, how did they not see by that white woman telling her son I would cause him harm, that little boy will start to associate any black or brown person as someone who could hurt him. That’s how one becomes a racist. The seeds are planted early when you’re young and impressionable.

Though I’m still working through my mixed fragility, I am keenly aware of how I’m not protected due to the color of my skin. I’ve been reading and researching to better understand my own black ancestry. I’m raising my voice not to be misconstrued as an “angry black woman,” but to speak out against what’s right and wrong. Racism is wrong. Period.

We need white voices to speak up when these situations occur. You can’t change a racist, but you can hopefully change an outcome with action. Here are two articles for my white friends to see how they can help fight racial injustice. 

https://medium.com/equality-includes-you/what-white-people-can-do-for-racial-justice-f2d18b0e0234

https://sojo.net/articles/our-white-friends-desiring-be-allies?fbclid=IwAR2pS0j7E4NdA8Z8Hr6OFNiwqsDtHFjzFdQxRMaoravHZP4mA8WYV-rPoFU

Until next time,

Warrior Megsie

Stop Questioning My Infertility

It never fails to amaze but also anger me when women question my infertility. On Mother’s Day, I posted below.

I would think no explanation would be needed with this post. I’m not questioning if I am infertile or not. I’m not asking about IVF. I’m clearly stating I AM infertile thanks to cancer. Period. Yet, I inevitably get responses of “miracles happen every day” or “I was infertile once and then gave birth” or “Just believe, and it will happen.”

The insensitivity in those comments make me burn. No one has a right to question without knowing the particulars of the situation. Then when I comment on it, I get the common response of “I was just trying to give you hope.”

The world of infertility is a delicate, sensitive, and emotional topic for men and women. I wish people would stop trying to “fix” the situation, especially when they don’t personally know the person.

I shouldn’t have to post that I had to be medically induced into menopause at 40 because I was intolerant of all post-treatment medications for pre-menopausal women.

I shouldn’t have to post that I had a septate uterus which is a deformity of the uterus, that happens during fetal development before birth. A membrane called the septum divides the inner portion of uterus, at its middle. It has been associated with an increase in the risk of miscarriage, premature delivery, and malpresentation. It’s associated with poorest reproductive outcomes.

I shouldn’t have to post that that aside from discovering I had a septate uterus, my surgical report from the hysterectomy and salpingo oophorectomy also stated I had endometriosis.

Though I know the comments weren’t intentionally made to be hurtful, they were still super insensitive and felt like a kick in the gut. I simply wanted to post for those women who truly are infertile that I know how difficult Mother’s Day can be. If you ever see a woman or a man post about infertility, please do not make those kinds of comments because you do not know the backstory.

Unless the Lord thinks I should have an Immaculate Conception, there is no hoping for a miracle. If someone is asking a question about infertility in their post, that’s the only time it’s appropriate to make those comments. When someone is like me is being vulnerable and stating their truth, don’t kick them below the belt like that. Ever.

Until next time,

Warrior Megsie

My Soul is Cracked

***This is NOT a cancer post. This is about racism.***

What do you do once your soul has been cracked? As an empath, I physically, mentally, and emotionally hurt for ALL black, brown, disabled, and LGBTQ lives that have been senselessly lost due to racism and hate.

I’m tired of the excuses.

I’m tired of tRump blaming everyone but himself for the colossal cluster f*ck of the COVID-19 pandemic. The fact he STILL invokes former President Obama’s name and blames him for this pandemic and a million other things is bizarre and plain insane.

The fact he STILL invokes Hillary Clinton’s name and gets his cult to chant, “lock her up” three years later is disturbing.

The fact tRump STILL has kids and immigrant parents in cages and neither he, GOP, or his cult have no qualms about it is horrific.

I’m tired of white people wearing gas masks carrying huge guns as a contemporary KKK get up demanding their liberty during a pandemic. What those Michigan people did last week was domestic terrorism. Period. If that had been POC in that government building dressed and acting like that, it would’ve been complete bloodshed.

I’m tired of these white murderers getting to roam free with zero consequences. Had a white person been jogging down the street and then hunted like a damn animal, you can bet there would be an outrage and arrest made in a matter of hours. Here we are months later and STILL no arrests and waiting for the case of the murder of Ahmaud Arbery to be presented before a grand jury. I literally can’t wrap my head around the absolute injustice that continues to be done to the Arbery family.

I’m tired of hearing many of my white friends tell me not to lose hope and there are still good people in the world. I see posts from many white friends questioning why they can’t go to the beach during a pandemic and want to revolt against authority because they don’t like the government telling them what to do.

ARE YOU KIDDING ME?!

How can one NOT lose faith in humanity?

The thing is none of them have ever had to fear for their lives for being different.

They can walk in a store and not be followed.

They can walk or jog down the street and not be killed.

They can be pulled over by the police and not be killed.

They can walk in a store and not have racial slurs hurled at them.

They can walk into a government building with guns and not be arrested or killed.

They can KILL a black or brown person and STILL get off scot-free or not be arrested at all.

I’ve spent years hating my skin color and wishing every single day up until last week that I was white. For the first time ever, I’m claiming my skin. I’ve been systematically brainwashed into thinking I MUST fit in with whites to get ahead. Ever since I was a little girl, I would look in beauty magazines and never see anyone who looked like me. My own mother is light skinned and had long beautiful hair when I was young.

I wanted the long blonde hair, waif body, and green eyes.

I wanted the small nose and delicate features.

I wanted to have a flat butt and slim thighs.

Though I’ve been horribly bullied by many blacks in my life for being a “sellout” or “acting too white,” I now understand their frustration. I fit in too well is what they’re basically saying.

The thing is, I was never intentionally “talking white” or “dressing white” or even “acting white.” I was just trying to be ME.

Yet, I’ve been told by many whites over the years that they don’t see color when talking with me. I used to think that was a compliment. I’m ashamed to admit that I’m just now fully understanding the racism behind those words. How do they not see my brown skin, full lips, and dark brown eyes?

Then I think to myself, why does everyone classify my voice as white? How come I can’t just sound like an educated and intelligent person? Why does my voice have to have a color assigned to it?

Now, I’m not ashamed that I like Taylor Swift, wear fascinators in my hair, like certain movies and the arts.

I’m ashamed of hating the color of my skin.

I’m ashamed of hating my dark brown eyes.

I’m ashamed of hating my nose and full lips.

I’m ashamed of hating my chemo curly hair.

I’m ashamed of hating my once athletic body.

I’m ashamed of wanting to BE anyone but myself.

I’m ashamed of not wanting to learn more about black culture.

I’m ashamed I allowed white people to make me feel less than I am.

If anything, being laid off during a pandemic has extended time to truly see white privilege and white fragility in its truest form. I’ve pulled back my blinders and see how destructive I’ve been living my life.

The real journey is figuring out who I am now. I can’t repair this crack in my soul until I cut through the layers of self-hate, hurt, guilt, and insecurity.

-Megan-Claire Chase

Blog photo credit: Kristina Stahl / The Triton

When You’re Not Considered Essential

I’ve been struggling with the term “essential” for the past few weeks. I have a visceral reaction each time I hear it on the news or read it on social media. In the midst of this COVID-19 pandemic, I was deemed unessential by my former employer and unessential by my medical team. I didn’t realize how much I want to be classified as an “essential” person.

As I wrote in my previous blog post, I was laid off on April 3rd, and it was a shock. I never once thought I was in danger of losing my job and had considered my skills and talent essential. The coldness and dismissive way I was laid off has done a number on my psyche.

Since I’m not on any post-treatment medications for my breast cancer, my oncologist said I only need to see him in-person once a year. My body is intolerant of ALL post-treatment medications at this time. I was told I fall into a category of women whose body just cannot tolerate anything currently on the market. My breast cancer surgeon wants to see me every six months for scans. Once again, I feel like a little pink fish tossed out into sea in the middle of swarming great white sharks. How long will I float before I get bitten with metastatic cancer?

If the corporate world and medical world don’t think I’m essential, then how should I classify myself?

I look at my spreadsheet that lists all my medical bills (yes; I keep a spreadsheet) and think they have no trouble taking my money and calling me during a pandemic asking for payment. I guess my money or lack thereof is essential but not my body.

I fully admit my depression and anxiety is swinging like a monkey at a jungle gym. I have way too many unknowns happening in my life. I can handle one but not multiple. Trying to stay motivated and some days are tougher than others. If I’m not considered essential, then what is my purpose?

Well, when I get too stuck in my head, I need to DO something to give the illusion that I’m essential. So, I went grocery shopping with my mother (she paid since I’m unemployed) and bought food to deliver to St. Andrew Catholic Church so they can give it to St. Vincent de Paul’s food bank, and delivered food to a the women’s shelter The Drake House. I felt this surge of energy and felt essential in doing something kind. I can’t bare to think of people and children going hungry at any time but especially during an economic shutdown.

Then I felt essential again yesterday as I led a 15-minute session about writing to feel and heal at the GRYT Cancer and Mental Health Summit online. I had so much fun preparing for it all week and then to talk about my struggles and how writing helps gauge my mental health was hugely cathartic. If what I said resonated with at least two people, then mission accomplished.

I have no idea what this week will bring. Here’s what’s running through my head right now.

Will I get a job interview?

Will my true purpose be revealed to me?

Will I get a job doing what I genuinely love that doesn’t deplete my soul?

Will my unemployment funds miraculously show up in my back account since I can’t get a human on the phone at the department of labor?

Hopefully, I can find something to do that will make me feel essential this week and keep the thick veil of depression and anxiety from suffocating me.

Until next time,

Warrior Megsie

A Special Moment Within an Unfortunate Situation

It’s not every day one can say they were featured in a major newspaper like the New York Times, but I can. I should be elated and on cloud 500, but instead, I am a mixed bag of emotions. The same day the article was published was also my official last day with the company.

I know I’m one of the many, many millions suddenly out of work and without health insurance due to the COVID-19 pandemic. I was very careful in my language with the reporter. What I couldn’t say is how hurt I am about the way the layoff was handled. It was so cold and dismissive. Considering I worked for a staffing company, there was no offer to help with my resume or job search. It’s their dismissive tone that I can’t seem to get past. It was like those two years I worked there under super stressful circumstances with constant changes in leadership and visions meant nothing. My professional reputation within that company was stellar.

The New York Times – 4/3/20 (link to digital article is on my ‘About’ page)

What you don’t know about the picture above is it was taken in the courtyard of where I used to work. Since the parks were closed, and the New York Times photographer needed to keep six feet away from me for social distancing, I suggested the courtyard because it’s the one thing that always brought me peace during stressful times. I was able in my own way say goodbye, which is what the company tried to strip me and others of doing.

So, as thrilling as it is to be featured in a significant article and be part of COVID-19 economic history, I’m deeply depressed because there was no way to prepare for such another tough financial hit. I grow so tired of being told to “stay positive” and “you’ll get another job in no time.” These are dire times for those who are professionals and those who are hourly workers because it’s ALL industries that have taken a hit to their bottom line and not just a select few. That’s why it’s so scary and uncertain. How does one stand out from the crowd when not many companies are hiring right now or in a hiring freeze?

I’ve been talking and emailing with recruiters all week. They tell me to keep applying for positions, but they aren’t receiving many job openings. I do have one promising lead, so I pray it turns into an interview and ultimately a job offer. I’ve been networking like crazy as well.

Of course, the other issue is health insurance. To just have it ripped away with only a week to try and get medications refilled and scramble to get my breast cancer scans rescheduled before my last day with the company caused pure panic. It truly was a miracle that I was able to get both the bilateral breast MRI and diagnostic mammogram rescheduled for the same day. I had walked in there last Wednesday with only the MRI officially scheduled. The schedulers said they couldn’t fit my diagnostic mammogram just the day before. So, when I expressed my anxiety and disappointment with the MRI nurse, she told me to sit tight and would see what she could do. I was there five hours but didn’t care.

The company I now used to work for didn’t think about those whose lives depend on health insurance. I had to cancel my second epidural spinal steroid injection because they couldn’t fit me last week. That’s why I mentioned I am a breast cancer survivor and how the added stress of losing my insurance was affecting me to the reporter as well. I’m currently lacking motivation to apply for the marketplace insurance, even though I have a dear friend who has generously offered to help with the application.

Though I have much to celebrate – officially 4 years NED and the article – I’m more depressed now than angry this week. My sleep cycle is completely off. I’ve had a few stress headaches and more intense fibromyalgia flare ups. My back pain makes sitting, sleeping and walking feel impossible.

I was really hoping 2020 would be a better year. This is not a relaxing time. I still have hope for better days ahead. So, I am extending grace with myself and feeling everything I need to in order to move past it and get motivated again.

Until next time,

Warrior Megsie

COVID-19, Laid Off and Mental Health…OH My!

As many of you saw on Thursday, I was laid off from my job as a marketing project manager. I honestly did not see it coming and was completely blindsided. I found out later that a total of 300 people were laid off from the company due to the COVID-19 pandemic and their bottom line. As a survivor of the 2008 recession and breast cancer survivor, I know this will be an even tougher road due to so much uncertainty about our health.

I’m a realist and see the massive layoff numbers, especially now that I am part of that number. It’s not about being capable or skilled at this time. Many of us who are laid off are more than capable and skilled. That’s the issue. The competition will be much like the recession days; extremely fierce. Plus, many companies are implementing hiring freezes except for healthcare, technology and food industries.

I’ve been a mixed bag of emotions since Thursday – furious, scared, disbelief, anxious. I initially got more upset being told to be strong. I know people meant it in a loving and kind way and weren’t sure what to say. I’m sure I came across unintentionally a little snappy when responding to texts and messages. You see, I already AM strong. How much stronger do I need to be to survive in this world? I never set out to be a modern-day Hercules.

I’ve spent this entire weekend doing major self-care so I wouldn’t complete snap or fall into a serious depression. What’s hardest for me to deal with is feeling completely disrespected by my former manager and bigger boss. So, here’s what I’ve done to cope and change my mindset so I can focus on next steps come Monday morning.

  1. I needed to feel in control of my space, so I did OCD cleaning from top to bottom. I pushed through my chronic pain which has been sky high because I needed that control.
  2. I purged of all the logo’d work stuff (water bottles, bags, backpacks, notepads) which really made me feel good.
  3. I must’ve vacuumed five different times. Each time I shouted all the things I wanted to say out loud to my former manager and bigger boss but never could to their faces.
  4. As thoughts of them would enter my mind, I would quickly replace it with a positive thought of the amazing people I got to meet and hangout with for the past two years.
  5. I thought about how one of the regional vice presidents called me after I emailed him personally thank him for being such a great light and inspiration in the office. His beautiful words to me brought me to tears. He’s just a good man and a father figure in the office.
  6. I thought about all of YOU who reached out to me with posts, texts, emails, DMs and calls and thought how blessed I am to have people who care, even those who’ve never met me in-person.
  7. I thought about how I managed to push through chemo brain and be on point almost every day and make big decisions and lead conference calls and meetings.
  8. I read tons of inspirational quotes, prayed, read some self-help books on my bookshelf about transition and struggles.
  9. I’ve watched my favorite action movies and TV shows with a fierce female lead that I love so much. Those who know me well, know that Alias is my go-to series every single time. I just connect with Jennifer Garner’s character Sydney on so many levels. I even have an autographed script of the pilot, autographed picture of Jennifer Garner and the Alias books. Yeah, I’ve been obsessed from day one.
  10. I’ve spent time remembering the many, many trials I’ve already survived and still standing. I’m reminding myself that even when I want to give up, I must push forward because I have purpose in this life. Though I don’t know how my purpose will fully flourish, I’m trusting God’s plan.

All the above has helped me get to a decent place mentally and emotionally. I haven’t been able to verbally talk to many people this weekend. I knew I needed to work on my mindset so I wouldn’t go ballistic or cry uncontrollably. So again, I apologize for unintentionally sounding snappy in my texts or DMs.

Being laid off during this COVID-19 pandemic is downright shitty. I allowed myself to get angry and then release it. It’s so ironic that I literally am a Cancer (birthday July 3rd), so I crawled into my shell this weekend so I could emerge with a plan of action and focus come Monday. Again, I’m already a strong and resilient person and know I’ll get through this. It’s just a tough pill to swallow because I was hoping for a somewhat stable 2020 financially, professionally and physically since last year was a complete bust.

Here are the top quotes that have brought comfort to me. I may have some printed to look at often…can you guess which one (s)?

So like Dorothy’s “lions and tigers and bears, oh my!” line, I cautiously step into Monday thinking of COVID-19, networking, revising my current resume, trying to get my breast cancer scans rescheduled for this week before I lose my company health insurance, waiting for my official work end date so I can file for unemployment, reviewing Medicaid and ACA and bills.  

On the bright side, I have time to write and submit to my huge list of publications that I have been aching to do. Most of all, I know that I am not alone in this struggle and calm enough to fully reach out to friends to lean on. I love y’all!

Until next time,

Warrior Megsie

Pretty in Pink

With so much uncertainty and emotions running high, I decided to focus this week’s blog post to a happy time from the past. That’s why I love my scrapbooks and photo albums. For all the painful and challenging times, I have just as many awesome memories captured for easy reference.

REWIND: Let me take you back to my senior year of high school in 1995. Anyone from Macon, GA and surrounding areas know all about the annual Cherry Blossom Festival that happens in March. It’s an international festival of friendship, plus the cherry blossom trees are in full bloom. For me, it was always a favorite time of year because everything cherry blossom related is PINK, my favorite color.

Though I grew up watching pageants, I never thought I would actually be in one. My high school, Mount de Sales Academy, always had at least 1-2 seniors on the Cherry Blossom Court every year. I had never thought of entering the Cherry Blossom Pageant until a friend from another high school suggested it. Her name was Ann, and she was a 1994 Cherry Blossom Princess from Central High School. We were in a musical together back then during her reign. She thought I would be perfect for it.

Considering pink has been my favorite color since I was four years old, I thought it would be fun to enter the pageant and be immersed in everything pink, meet more new people and practice my interviewing skills for college.  For this pageant, the talent was giving a speech on a topic of your choice. I have always loved the stage, so thought it would be an absolute blast.

My friend Anne was so convinced I would get on the court that after she left for college, she had her mom reach out to give me her pink pageant gown, pink interview suit and pink poodle skirt. We happened to be the exact same height and size. I was a tiny little thing back in the day.

In the two weeks leading up to the pageant, my mother got very ill and nearly died. She got a staph infection and pneumonia and was hospitalized. I did not realize how serious all this was at the time. My youth group leaders and mother’s friends stepped in and made sure I had everything I needed, got to school and all to all the pageant rehearsals. This was the start of mother’s body notifying her something was seriously wrong.

As excited as I was on the day of the pageant, I was deeply sad because my mother wouldn’t be there. She had never missed a major performance of mine. I remember getting ready in the dressing room at the Grand Opera House in downtown Macon when one of the volunteers walked over with a message. My mother was there. She had signed herself out of the hospital against her doctor’s orders and had a nurse with her. The Cherry Blossom Committee had roped off a section in the back, so no one was seated near her. Once I knew my mother was in the audience, I felt even more confident and wanted to do my utmost best.

From the moment the pageant started, I was on fire! My smile had never been so big. When I was on stage during the opening dance number, I searched the audience and found where mother was sitting with a facemask and nurse by her side with her IV. Knowing she was so sick but determined not to miss my first time in a pageant meant the world to me. She was diagnosed with a blood cancer called essential thrombocythemia at that time. She didn’t tell me until the summer before my junior year of college.

Princess Megan-Claire (ME)

The Cherry Blossom Court consists of one queen and four princesses. So, when I made the top 10 and then ultimately the top five, and then crowned as one of the 1995 Cherry Blossom Princesses, I could not have been prouder of myself. I had always wanted to be a debutante like my mother. I felt like one that night and at the night of the Cherry Blossom Ball.

From left to right: Princess Joy, Princess Megan-Claire (ME), Queen Keisha, Princess Laura and Princess Jennifer
From left to right: Queen Keisha, Princess Joy, Princess Megan-Claire (ME), Princess Jennifer and Princess Laura

I got to do some amazing things while on the Court. I got to be part of ribbon cuttings, a motivational speaker to young girls, thrilling helicopter ride over the city, meet dignitaries from all over the world, and a judge for the Little Miss Cherry Blossom Pageant. The highlight of the entire experience aside from being on the Court was meeting the Band of the Welsh Guards of England. In fact, I kept in touch with one for a few months afterward. I still have the letter! They were super nice, flirty and hilarious. I was never popular with boys in high school, so it was nice to get some attention from some cuties but all in good fun.

From left to right: Princess Megan-Claire, Welsh Guard #1 and #2, Princess Jennifer
Princess Megan-Claire (ME) just hanging out with the Band of the Welsh Guards

My cherry blossom tiara is one of my most prized possession because of all the amazing and fun memories attached to it.  The entire experience was one of the highlights of my senior year in high school.

So, as we move into another week of uncertainty due to COVID-19, those still in treatment or newly diagnosed, make sure to take time and focus on some of the good things in your life, whether past or present.

Until nex time,

Warrior Megsie

“With a Little Help from My Friends” by Joe Cocker

I’m very open with my struggles of depression and sometimes anxiety. It’s been part of me since my early teens. Though there is a lot of darkness in me, there is also pure joy and sunlight.

I had somewhat stopped leaning on people due to constant disappointment of them not being able to hold me up during my time of need. When a strong person cracks or heaven forbid breaks, instead of being heard and allowed to cry, I’m always told to “buck up” and “be strong.” That’s enormous pressure to always remain in-tact.

In this digital age, the reach and support one can find is vast. Though I long for a local bestie to binge watch Downton Abbey (which I’m watching as I type this) and other fun shows or just hangout chatting, it struck me that I’ve been longing for the wrong thing. I keep focusing on friends in real life who can come over, but I see now I have made great female and male friends from all over the world thanks to social media.

From DMs, to supportive posts, to recorded messages from peeps in the UK, to sweet cards and unexpected gifts…how dare I say I’m lonely even for an instant!

So, as the musician and songwriter Joe Cocker sang With a Little Help from My Friends, that’s exactly why I’m able to write this with a genuine smile on my face. I thank those of you who always take time to connect with me on some level. It means more than you will ever know.

 Link to the song

Thought I would also take this opportunity to share memories of fun times from the high school days through mid-20’s. I always get excited to share pictures from my many, many photo albums and scrapbooks.

Until next time,

Warrior Megsie

Toughest Role Starring ME

My 4-year chemoversary was on February 26th. I confess I had many mixed emotions and flashbacks on that day. Anyone who has been reading my blog for some time and/or follows me on social media has seen numerous posts about the chemo curls and how I’ve hated them from day one. Looking in the mirror every single day and not recognizing myself has caused major trauma to my psyche.

Last year was the first year I was able to wear my hair straight without looking like a mushroom head. I was so excited to post the first pictures of my hair blown straight because I recognized my reflection for a brief moment. Though I know none of the comments were meant to be malicious, I confess I was deeply hurt when soooo many commented the straight hair was nice, but I looked cuter with the chemo curls. If I’m being honest, it felt like a slap in the face. Couldn’t they see these curls are a constant reminder of the most painful and horrific time of my life?

I had wanted and needed so desperately to connect with some part of me again. My hair has always been important to me. I come from a long line of women on my mother’s side with glorious hair inherited from my great-great-grandmother Ella. She was a full-blooded Cherokee Indian. Anyone who knows me from when I was little saw how long my mother’s hair used to be. My hair had grown to my shoulder blades and super thick by the time I was 9 years old, but I cut it when I was 10 after seeing Anne of Green Gables. It was the scene when she had to cut her hair into a bob because she wanted to dye her red hair black like Diana Barry, but it turned green. I always had at least a chin length bob or longer.

No one has seen the tears when I realized my hair when worn straight isn’t thick like it used to be. The right side isn’t growing fast at all and looks odd. That’s why I started wearing it curly again. I’m waiting for that right side to catch up.

Here I am 4 years later, and the curls seem to be permanent. The only reason I can handle them at this moment is because I do have the option to blow it straight even with the wonky right side. I didn’t realize how much I needed to know I had options again.

Those 16 rounds of chemo I had to receive were the hardest and scariest 5 months of my entire life. I didn’t know I could feel such pain in my body. I had the motherload of side effects, aside from the hair loss trauma. I went back to my journal during that time and compiled a list of ALL side effects I experienced while on Adriamycin, Cytoxan and Taxol.

Dizziness.

Nosebleeds.

Chemo brain.

Severe anemia.

Rapid heartbeat.

Godawful nausea.

Loss of appetite.

Tongue would swell.

Bottom teeth ached.

Toenails turned black.

Loss of taste and smell.

My tongue turned black.

Terrible and painful constipation.

Bone pain from the neulasta shots.

Loss of control of bowel movements.

The palms of my hands and feet looked burned.

Hair growing back completely different and curly.

Fingernail beds lifted and ultimately fell off and so painful.

Weight gain from all the steroids infused before each chemo.

Lack of sleep from all the steroids infused before each chemo.

Dark circles under my eyes – still have them but not as panda like.

Physical weakness to the point I had to use a cane and could no longer drive.

Hair fell out everywhere – head, eyebrows, nose hair, lashes, legs, underarms and lady parts.

Mouth sores (those in chemo now, ask about Gel Clair and use it with the magic mouthwash).

Neuropathy in hands and feet – permanent nerve damage to my feet. Zero feeling from upper balls of my feet through my toes within the first 15 minutes of that very first Taxol chemo.

Ultimately chemo induced fibromyalgia that appeared a year after finishing treatment but not properly diagnosed until two years later.

So, when others think I should just move on or not focus on the negative, what they don’t comprehend is I have permanent damage ALL stemming from the chemo. As a former dancer and musical theatre actress in my younger days, to not feel my feet every single day is traumatic. The days of ballet, musical theatre, swing, salsa and tap days are over. I used to walk so gracefully. Now I have a hard time walking across a parking lot because the numbness can also move up my legs and I’ll fall over. That’s why I have a permanent handicap sign for my car. I feel like I’m 543 instead of 43 now.

No amount of gabapentin, acupuncture and any other “magical” treatment will work because my case is severe and permanent in my feet. The nerves are dead.

The nerves in my hands are still regenerating because they often sting and feel like tiny knives stabbing me. Even as I type this piece my left fingers are rather stabby and hurting. I had to learn how to button clothes and put on earrings, bracelets and necklaces again. I have multiple burns on my left arm from when I’ve lost all feeling in my right hand and dropped the iron. I have a new burn on the left side of my neck from losing feeling in my right hand when using the curling iron a few weeks ago.

My body is permanently changed from the chemo, from head to toe. This is one costume I’ve never desired to wear. From chronic pain to neuropathy to thin and wonky hair to burns, I continue to feel like an actress playing the greatest role of my life – ME.

Until next time,

Warrior Megsie

We Go Together…

I’m strolling down memory lane remembering my very first audition for a musical in May 1990. It was Grease. Over two hundred kids auditioned and only 30 or so were chosen. I was one of the youngest ones in the cast and was a cheerleader. Kind of fitting, huh?  I had one line that always got a laugh when I sat on Doody’s lap.

I was bullied a lot in the high school days and never truly fit in. I was “too different.” So why am I bringing this up? Well, it reminded me of a time where I felt a part of something big and special.

I felt accepted.

I felt liked.

I felt magical.

I felt seen.

That’s how I feel in cancerland. I’ve longed to find my place in the world. I never thought I would find this kind of acceptance for just being plain ‘ole ME. I’ve dealt with some in cancerland who are bullies and rude and who tried to bring me down and doubt myself. Fortunately, going through cancer has given me a thicker skin and made me intolerant of bullshit.

There was a time in my life pre-cancer where I didn’t feel like I had any friends.  I had isolated myself which is completely against my nature. I wasn’t confident. I had become this anxiety ridden and insecure woman.

I can honestly say my cancer treatments not only killed the cancer, it also killed that insecurity and anxiety that had kept me stagnant from moving forward in life. It’s strange that it took something life-threating for me to realize that I been a walking zombie just going through the motions with no feeling other than despair.

Fast forward to present day, and I feel like the ME who once stepped on that stage in Grease. I’m fostering friendships both in and out of cancerland. I can honestly say I have friends locally to hang out with now, but I also have friends out of state and internationally who I can facetime or Skype with too. They are just as supportive and caring as the few who are here locally.

I feel confident.

I feel encouraged.

I feel loved.

I feel supported.

So, I leave you with the video of the finale in Grease click here because that’s how I feel about all the incredible people that keep coming into my life. There is a new pep in my step. My heart is doing cartwheels. Dare I say, I’m actually having some FUN.  

Until next time,

Warrior Megsie

My Own Valentine

I’ve always been a big romantic. I remember how disappointed I felt when I realized that love isn’t like the movies. I wanted so much to believe in fairytales and happy endings. I never thought I’d have to write my own…alone.

I didn’t date in high school in Macon, GA. I dated a little bit in college in Albany, NY. I went nuts dating in Los Angeles, CA because I felt like a hottie. Then when I moved back to Atlanta, GA, my dating life somewhat fizzled.

For me, it IS harder dating in the south than it was up north or on the west coast. Aside from the whole race issue, I feel dating is harder in this post-cancer body.

I was interviewed for an article about cancer and dating for Datingroo in the UK. Click here for article   In the article, I talk about the difficulties of not knowing what to say on dates anymore. I don’t know what to put on my dating profile anymore.

Now that my lower back issue should hopefully be resolved or at least feel less pain in the coming weeks after my spinal epidural injection and additional PT, walking and standing won’t be as much of an issue anymore.

I remember going on a date a year post-cancer and the guy commented that I seem to be walking stiffly. How could I tell him my body feels like a 500-year-old, and that it was taking everything I had to not show pain while we walked into the restaurant or getting up from the chair?

I’m a well-known talker, so the fact I’m often at a loss for words on top of not being able to find words (thanks chemo brain), conversation is hard and awkward when talking with a man on the phone or in person. I don’t know how to talk about trivial things anymore. My thought process (when functioning) is heavy. I’m not as light or carefree as I used to be.

I have a hard time taking a compliment from a man because I immediately want to correct him and let him know I didn’t always look like this. I looked better. I looked thinner. I still feel like an imposter in this body.

Weight gain

Infertility

Zero sex drive

Scars like a railroad track

Radiation scars on left side of neck

Chronic pain

Chronic fatigue

Cognitive Issues (chemo brain)

Hair (though can wear straight now) is so much thinner

In this body, I don’t attract the type of men I’m attracted to. Instead, I get thugs or creepy old white guys contacting me. That’s why I deleted my dating profile two years ago. I’ve never thought of myself ugly or strikingly beautiful.  I know I have a pretty face with a sparkling personality. The fact these types of guys are what I attract in this body, well, it was hurting my self-esteem.

The saying, “The right guy won’t care what you look like” is false. Men are visual. Heck, I’m visual too!

That’s why I’ll spend another year as my own valentine. Until I can learn to at least like this body a little more, I can’t put myself out there, even if just for fun. The rejection that comes with dating is hard. My current mindset is too fragile to handle it.

I’ll never love this post-cancer body, but I can learn to at least like it. Plus, I refuse to settle.

Happy Valentine’s Day to all the single people both in cancerland and out.

Until next time,

Warrior Megsie

Black History Month and World Cancer Day

As I sit here thinking of Black History month and World Cancer Day, I have my favorite cellist Yo-Yo Ma playing to keep me in a Zen state of mind. I try not to let any negative or infuriatingly racially charged comments that I’ve received on my personal social media seep into heart but have a harder time when it stems from someone in the cancer community. This will be a post that I won’t be able to share in my online cancer support groups due to this topic.

Until a white person becomes a person of color, they will NEVER comprehend how many are treated by the white community and medical community. I’ve been questioned and not taken seriously or talked down to and know without a doubt it’s due to the color of my skin. Why do so many white people constantly question the validity of our experiences???

I used to have a lot of self-hate for myself. Growing up in the south and in a relatively small town where I was often the only person of color in my elementary school, church, ballet class or in a play or musical. I had horrible experiences as a child and teen that I don’t often talk about. Why? It’s because a white person will inevitably say that I took those comments the wrong way or it’s all in my head.

I remember not being invited to birthday parties because my friend’s parents wouldn’t allow him/her to have any black people over.

I remember a racist comment a religion teacher my junior year in high school made about the black sea. He said, “Why do they call it the black sea? It’s because all the black people bathed in it and made it dirty.” I remember sitting there shocked and sickened because the white kids and some of the black kids in my class laughed. Was I the only one who heard how extremely racist that comment was? Were the other black kids laughing because they didn’t know what else to do?

I remember asking a friend who had been my dance partner in numerous musicals back in the high school days at Macon Little Theatre if he wanted to go to prom with me. He immediately said yes because we always had fun on stage. Well, when he told his parents, they made him call me and say he couldn’t go because they didn’t want their son walking into prom with a black girl.

I remember going to different gynecologists here in Atlanta when I first moved back from LA and them not taking my pain seriously and just pushing birth control pills on me. When I ended up in the ER due to the severity of the pain, it turned out to be ovarian cyst that had ruptured.

I remember last year standing in line at two different pharmacies and a white mother telling her child, “See that black woman there? If you don’t be quiet, she will run her cart into you.” The first woman who said something similar at Kroger had just said “woman” but the one at Target said, “black woman.” Both were terrible because each little child will start to associate brown and black people with wanting to hurt them.

I remember being questioned about the type of breast cancer I had by the intake coordinator at the Cancer Support Community in Atlanta back in October 2015. Even though I wrote on the form that I had Stage IIA Invasive Lobular, the woman kept questioning me saying, “Are you sure it’s not Triple Negative? That’s what’s common in the African American community.” Why did I have to tell her three times that I know what kind of breast cancer I have and just because I’m black doesn’t mean I’ll automatically have something that’s common in that black community. It showed me that instead of seeing me as just a cancer patient looking for support, she saw me as an ignorant black cancer patient.

I remember posting that story in my cancer groups and some of the women blasting me for talking about race on there. They said race has no purpose in that group. Um, what?! When a white person keeps questioning the facts that I’ve written about MY type of cancer and not believing it because it’s “not common with African Americans” is beyond infuriating and racist.

I’ve seen first-hand how hate is taught. None of us are born with hate. I’ve experienced intraracial prejudice, but that is a topic for another day.

When a white person, especially in the cancer community, tells me I need to advocate for myself, I seriously lose my freaking mind. Then I try and tell myself this person doesn’t know me or know that I’m a HUGE advocate for myself and have ALWAYS been that way.

We’ve all heard the saying, “Don’t judge a book by its cover,” right? Well, don’t judge a person by their skin color. My DNA is 62% black and 38% other but all most tend to see is “just black.”

All of this to say, when a person of color tells you about a negative experience they deem racist whether inside or outside the cancer community, don’t question them. If we say it out loud or write about it, it’s because it has affected us in some way. Take it as a learning opportunity and don’t tell us it’s in our heads. You weren’t there to see facial expressions or hear the tone and inflection.

Now it’s time to blast some old school Korn and Nine Inch Nails because I’m supremely worked up after writing this.

Until next time,

Warrior Megsie

A New Perspective on Infertility

I think many cancer patients/survivors grieve for some part of themselves that’s been lost to this horrible disease. When you add the loss of body parts or the body that you used to know, the grief becomes greater. Then when cancer makes you infertile when you’re still of childbearing age, there’s another type of grief that is palpable.

One of the hardest paths I’ve had to travel post-cancer has been due to the choice of having a child being taken away. Since I was intolerant of the medications to help prevent recurrence for pre-menopausal women, I had to be medically induced into menopause in 2017, so I could try the medications for post-menopausal women. Plus, during my pre-cancer days, I had ongoing issues with my cervix and ovaries – multiple abnormal pap smears and cysts the size of lemons on my ovaries. I had a bicornuate uterus which means it was heart-shaped, so high risk for miscarriages and premature birth.

It’s painfully clear that I would’ve struggled to get pregnant and/or carry a baby to full term. Do I want to live, or die doesn’t seem like a fair choice.

I had stopped blogging about my feelings on infertility because I would get so hurt when people would say, “just adopt or foster.” It’s such a callous thing to say even though I know they were trying to be supportive. I constantly wanted to scream that I’m chronically single!!!

I grew up with divorced parents where my mother had sole custody of me. I saw how hard it was to raise me as single, divorced woman. It truly took an amazing village to help raise and support my mother and I and know we were blessed to have such amazing support. That’s why I would never want to raise a child on my own unless forced due to a divorce. I’ve cost my mother a fortune, even as an adult.

I would never willingly adopt or foster a vulnerable child without being able to fully support them financially and emotionally. I physically don’t have the energy to handle raising a child on my own. I can barely keep myself afloat with medical bills constantly hanging over me and chronic pain that can often turn excruciating. How would that be fair to a child? They need more than just love.

The part I struggle with the most is the longing to share my childhood and college memories, values and wisdom with a child.

Fast forward to Friday evening when I was talking with my friend Francesca. I mentioned her a lot last year because we partnered together to write an abstract that we were selected to present titled, “You don’t really have a say in anything…like you don’t have any options”: AYA Cancer Survivors’ Perspectives on Fertility Preservation Conversations with Healthcare Providers at the 16th Annual American Psychosocial Oncology Society(APOS) in Atlanta in February 2019. It’s honestly one of the proudest moments of my life post-cancer thus far.

Francesca & Megs at APOS Feb’19

Though I’m 20+ years older than Francesca, who is studying for the MCAT’s, she is authentic, thoughtful, brilliant and compassionate among other fantastic qualities. She floored me by saying she thought of me like a godmother, an aunt and a big sister rolled into one. She said I didn’t need to only think I can impart wisdom or share my memories and values with a child.

The way she said those words…her tone and inflection just touched my heart and gave me a new perspective on my infertility. As you can imagine, I was brought to tears but tears of joy and appreciation. Francesca was surprised I didn’t seem to realize that’s how she viewed me.

I had been so stuck on the grieving train thinking only about the loss of a baby or young child, I never thought about the true impact I could make and have apparently been making on an actual young adult outside the cancer world. I’ve mentored over the years but never had anyone say what Francesca said to me with such sincerity.

Yes, I still feel the loss of choice, but have gained a new and unexpected perspective on this loss.  I do have so much love to give and little words of wisdom to impart. I’m usually very observant but completely missed seeing I’ve been making a positive impact on someone for almost two years.

My life on the cancer train just took a lovely turn on an unexpected path which has given me a new sense of hope and purpose. Words matter. I see now that I matter too.

Nut-Meg Rises Again

Just when I’m teetering on the brink of a nervous breakdown, something hilarious happens that snaps me back. I had originally written a woeful post but deleted it after yesterday’s hilarity. Let me set the scene of what happened and why I’m in better spirits.

I’ve been under more stress than usual since the last few days of 2019 and the beginning of 2020 due to my health and an unexpected death in my family. My body tends to do something crazy to rebel against stress. As usual, it’s always something spectacularly visual. This time a blood vessel popped in my left eye. Oh, my eye! My eye!

Seriously though, the fact it doesn’t hurt is the only reason I’m not going totally bonkers or even crying. I was and still am rather pissed, but my body no longer handles stress well.

It is highly noticeable and looks quite hideous. I’ve already had people at work asking what happened and a cashier at a store ask too. For once, I’m avoiding looking at my face. I couldn’t wear big sunglasses today because it was extremely overcast and raining.

So, my hair appointment had to be rescheduled because this particular natural hair dye I must use, due to being allergic to certain ingredients, did not arrive in time. Well, since I’m looking crazy, I was perfectly calm and said to call me once it has arrived and I’ll reschedule. My feathers weren’t ruffled. I love Tiramisu Salon and have been going to them for almost 13 years.

Since I was out, I decided to get my mail. I usually check my mail once a week because I hate having to get out of the car often due to pain. I had a lovely surprise when I checked my mailbox.

It was this gorgeous French beret. I thought a friend had sent it since I have so many amazing, thoughtful and generous friends who love to send surprises.  I had posted on my personal FB page about it, asking who sent it so I could thank them.

I was checking my wish list on Amazon to see if I could find a clue as to who sent me this stunning hat. Well, I totally forgot I ordered the hat off Amazon with Christmas money weeks ago!!! So, I surprised MYSELF!!! I literally have zero memory ever ordering it. So, it’s times like this where residual chemo brain comes in handy.

Should I send myself a thank you note?

All this to say, that even in a serious depressive state, my nuttiness always tends to poke through. I’m relieved I can still crack myself up even when the darkness tries to suffocate me. I was given the nickname Nut-Meg when I was 14 years old. Proud to say the nickname still fits.

Even through major stress, chronic pain, a popped blood vessel and grieving over my uncle, I can still find humor and channel my inner Bette Davis. I’m relieved the essence of me is something that breast cancer and this post-cancer insanity can never diminish.

Cents & Sensibilities

It’s been a slightly difficult start to 2020. Toward the end of 2019, I spent hours on the phone with insurance, my primary, oncologist and doctor appointments fighting to get an MRI approved for my lower lumbar spine. Pleased as punch that I got my primary and oncologist working together as a team. It was a weight off my shoulders to have two exceptional doctors and a nurse advocating just as hard as I was to get it approved, especially during the holidays.

The good news is after being denied for the MRI twice by Cigna’s third party, my oncologist had a peer-to-peer discussion with them earlier this week. As of Thursday, January 2nd my MRI was approved. I was already organized and had rescheduled it two weeks ago for Tuesday, January 7th and will discuss the results and plan of action on Thursday, January 9th.

So, while I’m proud for advocating for myself along with my medical team, I’m still pretty pissed that I will be responsible for paying 80% toward my deductible since the MRI approval came on the 2nd. I truly do feel like Cigna did that on purpose so they wouldn’t have to pay because I had met my deductible and was $75 away from being covered 100% by the end of 2019.

It’s downright criminal that many of us must fight to receive the coverage and tests we deserve. Then we’re often stuck with huge bills that seem never ending.

A new year always brings added stress because of high insurance deductibles. Am I happy to have insurance through my employer? Of course, but it comes at a steep financial cost since I have to rotate between an MRI with contrast or an ultrasound every six months along with my diagnostic ultrasound + the cost of medications + copays to specialists. Me being me, I’m planning on fighting my portion of the MRI cost and file a complaint against the insurance. Sure, nothing will probably happen in my favor, but I must at least try for my piece of mind.

I do believe those pesky lesions on my spine are benign, but who knows what’s been growing there all this time since fighting with Cigna. Will they have to be burned off? Hell, if I know. Plus, will I have to get injections in the lower left side of my back to deal with this spondylitis? Will PT be part of the plan too?

All I see are dollar signs and scheduling conflicts as I move meetings at work to make it to appointments.

I’ve had people tell me to enjoy life, go on vacation and travel. I get so infuriated when I hear those suggestions. My insurance deductible through my employer is $6,500. How am I supposed to have fun and go anywhere or even save when that kind of cost looms over me? Getting critically ill is expensive and ongoing in the aftermath.

I want to go to different cancer conferences this year to meet more of the fabulous cancer warriors I’ve been talking to on social media but can’t take that kind of time off from work or have the extra funds since it all goes toward my high deductible. Yes, I know there are travel grants, but as I get older, I don’t qualify for some of those anymore. I’m at a weird age where I’m still “young” but not young enough to be eligible for some grants. Plus, I don’t have the energy to fill out applications once I get home from a very long day of working. I’m often mentally and physically spent.

As many look upon this new year as filled with possibilities, I’m already feeling the financial stress due to my health and the financial toxicity that is US healthcare.

My Big THANK YOU!

It’s always important to acknowledge our accomplishments personally and professionally. Those moments help reduce the sting of disappointments, fears and challenges. Well, that’s how I look at it. I’m prone to depression and fight hard to find things to help fuel my passions.

When I look at this list below, I did more than I thought this year. All of it is volunteer. Yes, it takes various amounts of energy that I don’t necessarily have, but each one of these have brought purpose to my life.

My blog has been syndicated on Cancer Health Magazine’s website June 2019 – Present.

SHARE Cancer Support – Pleased as punch to have a piece published on this great breast and ovarian cancer website. https://www.sharecancersupport.org/2019/12/what-i-learned-about-breast-cancer-megan-claire-chase/

VoyageATL – It is my first non-cancer publication to publish my cancer story. http://voyageatl.com/interview/meet-megan-claire-chase-life-cancer-train-dunwoody/

You can also find it in the Inspiring Stories series at the top of the homepage as part of the Sandy Springs collection. http://voyageatl.com/interview/inspiration-from-sandy-springs/

WATC TV Channel 57 – interviewed for October 2019 breast cancer awareness segment for young adult cancer survivors.

Brain Cancer Diaries – interviewed for an episode during October 2019 for breast cancer awareness on YouTube.

IHadCancer.com – wrote various pieces throughout the year that were published on their site.

Presented with Francesca Music from Elon University our abstract titled, “You don’t really have a say in anything…like you don’t have any options”: AYA Cancer Survivors’ Perspectives on Fertility Preservation Conversations with Healthcare Providers at the 16th Annual American Psychosocial Oncology Society (APOS) in Atlanta, GA in February 2019.

Francesca and I were also accepted for a Poster Symposia II: Sexual and Reproductive Health oral presentation at the annual meeting of the Society for Adolescent Health and Medicine in Washington, DC March 2019.

Our abstract is published in the medical journal Psycho-Oncology.  Here’s the citation:
Music, F., Chase, M. & Fair, C. (2019). “You don’t really have a say in anything….like you don’t have any options”: AYA perspectives on fertility
preservation conversations with healthcare providers. Psycho-Oncology, 28 S1, 17.  doi: 10.1002/pon.4986

Story Mistress for Paint Day and Speaker of Survivor Stories for Best Strokes: Hadassah Bares All for ART with Hadassah Greater Atlanta March 2019.

I also did a recap of my top five blog pieces that received the most views this year. It lets me know that many of you are still angry and still hurting.  I can see many of us desperately need a safe and supportive outlet to release the hurt and anger without judgement.

  1. Raging Against Myself
  2. So, hair me out…
  3. Hurting to Heal
  4. When Trust is Gone
  5. Palliative Care with a bottle of cannabis

Thank you for taking the time to read my blog posts. More importantly, thank you for reaching out either through my blog, DMs or on social media. Know you’re not alone. I thank all of you for not letting me feel alone either. I made it through another tough year because of your support and encouragement.

I hope 2020 will be a year full of healing, laughter, support, purpose and love for all of us.

Merry Christmas and Happy Hanukkah!

The Compassion of a Baby Spoon

Let me tell you what happened Friday. I was in such a good mood. I had taken a vacation day. I woke up with my pain level at an 8, which is tolerable. I took my time getting ready, and then put on my very favorite Christmas hat which makes me giggle. It’s my current profile pic on all my social media. ‘Ain’t it pretty? I was off to my doctor appointment, and then lunch with my mother.

I thought for sure my follow-up would last maybe 15 minutes. That’s what I was prepared for anyway. The original doctor who ordered the CT scan of my spine did not call to tell me I had spondylitis. Heck, I didn’t even see the actual report of the results. She just sent a message in the patient portal to come see her. Naturally, I flipped out, complained and got an appointment with a different doctor within that practice but different location. It’s slightly out of the way, but a nice drive when I don’t have anywhere else pressing to go.

I immediately liked this new doctor because she talked me like a colleague. So, when she pulled up the report and read it out loud, I was not prepared for what it said.

I have two small sclerotic lesions on my L3 and L4 lumbar vertebral body. The report says they’re likely benign but indeterminant at this point.

I have mild lumbar levoscoliosis which is a kind of scoliosis where my spine twists and curves toward the left side of my body in a C shape. 

Then it said I have mild to moderate lower lumbar spondylosis with facet hypertrophy in my L5 and lower spine. Spondylosis is typically a degenerative condition of the joints of the spine and is also known as spinal osteoarthritis. The discs, joints and ligaments of the spine are generally involved.

WTF?!?! Am I 43 or 543 years old?

So, instead of being at the appointment for 15 minutes and walking out with a treatment plan, I was there two hours and walked out absolutely freaked out! As soon as this new doctor read that report and my breast cancer history, she immediately called my oncologist in the room with me. Keep in mind, I had literally seen my oncologist on Thursday and had told him about this appointment. I liked how the new doctor asked my oncologist point blank what kind of tests he is going to order for me because it should come from him. I believe she is Ukrainian, and my oncologist is Russian. I had to listen intently because both accents are thick and fast.

Now I have an MRI with and without contrast scheduled on 12/26 and will get the results at my follow-up visit with my oncologist on 12/31. Once again a vacation day will be spent at a doctor’s office.

Those who think breast cancer is the “easy, free boob job type of cancer” need to be smacked. The complications and rapid aging it can cause the body leads to poor quality of life. I want so badly to apply for disability but know I cannot afford to live on pennies without insurance. Plus, I do love me some designer purses!

For those who missed my social media post about the on-call doctor who I called an asshole, you’re not missing much. I was super anxious and only have two emergency Ativan. I had called to see if I could get some Ativan or Xanax to tie me over either until Monday or thru the 26th. This so-called oncologist completely lacked compassion and empathy. He refused to help or even pull up my chart, which I asked him to do. He yelled at me for yelling at him and said, “I’m THE doctor. You can’t talk to me that way.” Um…no boyfriend, YOU can’t talk to ME that way. What an arrogant prick. After calling him an asshole and hanging up, the asshole proceeded to call back three times. I guess his fragile ego isn’t used to hearing the truth from a mere patient. I did not pick up. I already had my plan B waiting in the wings.

I learned a long time ago that I cannot trust the on-call doctors to actually listen or help, but at least it’s on record that I called asking for help. My friend Carla reminded me of my CBD:THC oil, so that was my plan B. It helped take the edge off so I could rest.

The responses of support and encouragement have been overwhelming and humbling by friends inside and outside the cancerland. Of course, you always have one or two cancer patients/survivors who have as much empathy and compassion as a baby spoon. My feathers get ruffled when other patients try to diagnose me. I know I’m not stage IV and pray I never will be, but when you start diagnosing me and telling me how you know everything because you are stage IV, that’s when I take issue. Fortunately, I’m not close to either one of those ladies who irked me yesterday on Facebook. I said what I needed to say and done with it. I just felt it was important to mention to not ever diminish someone else’s fear and anxiety without knowing their entire history or them personally.

After all, I’m only human with feelings.

This is not how I wanted to spend my last few weeks of 2019. Even if benign, the fear train is riding hard on the tracks because now I’ll have to be monitored in that area.  I was born with a benign tumor on my right leg as a baby. So, it’s not my first time getting tumors and thinking they’re benign. Then if it’s cancer, well…I can’t even fathom it. I’m mentally preparing myself for either outcome.

I will not allow this to my last post of 2019. I’ve had a lot of good and thrilling opportunities to combat the negativity and challenges experienced this year. So, expect that uplifting post this evening.

The Insanity of 2019

I can’t believe 2020 is around the corner. Just when I think a year can’t get any worse or filled with more challenges, I get a whole new slew of health issues. I’ve been reflecting a lot this week. I will make this a two-part series to discuss these challenges and the extraordiary opportunites of 2019.

I compiled a list of health issues that plagued me this year. Get comfy because the list is long!

February

Tried my 5th post breast cancer medication called Aromasin (Exestamine) to help prevent recurrence. Once again, my body is completely intolerant of it. It stressed my body out so badly within the first two weeks that I developed shingles on my left arm, hand and left side of my face.

For those who have never had the shingles, it’s essentially adult chickenpox. According to the handout my dermatologist at Preston Ridge Dermatology, PC gave me, here is the definition of shingles.

They are a painful skin rash that often blisters, caused by the zoster or chickenpox virus. Anyone who has had the chickenpox can get shingles. A weakened immune system seems to play a role in re-awakening this dormant virus, so people are more likely to get shingles after an illness, serious injury or stressful event. It usually occurs only on one side of the body.

Of course mine would be on the cancer side – the left. They are extremely painful and have to be treated within a certain timeframe for antibiotics to work properly.

My oncologist (my 4th one in three years due to previous one retiring) officially agreed there are no other options for the type of breast cancer I had and my pathology. It’s always tough hearing that. He said the only thing left to try is only available if I ever become metastatic. Lovely.

April

I landed in the ER due to severe dehydration and vertigo. I had been feeling odd for about two weeks. My head was pounding. I was quite dizzy and nauseous. I just pushing on and going to work every day.

I started feeling a tightness in my chest and pressure. I had never felt like that before and having difficulty breathing. I was initially going to call an ambulance but knew the cost would break me thanks to the high deductible of my health insurance. Since I only live two exits away from Northside Hospital, I elected to drive myself ever so slowly to the ER around 2am.  I didn’t call my mother or even tell anyone what was going on just yet.

My BP was 187/112 when I arrived to the ER. I didn’t even know blood pressure could get that high. I was scared to death. I realized it must be serious because three doctors came in after reading about my breast cancer history. I finally called my mother around 3am. She was not pleased that I drove myself and waited so late to call her. Once mother arrived, that’s when the doctors told us they feared I would have a stroke. I wasn’t released from the ER until almost 10am after hours of fluids and getting my blood pressure down to a below critical level.

May

Literally two weeks later, I had developed what I thought was the flu. My temp was 104.1. After three days in this misery and temp not going down, I went to my primary doctor’s office and saw the PA. I was tested for the flu but was negative. Again, I was having trouble breathing. When the PA listened to my breathing, she didn’t hear anything concerning. I asked for an x-ray and she agreed. I wanted to be sure.

It was pneumonia!!!!! I wish I had taken a picture of her face when she looked at the x-ray. She shook her head in disbelief and kept saying, “I couldn’t hear it, and would’ve missed it if you hadn’t insisted on an x-ray.”

By this point, I was so physically weak from pushing myself so hard for years on end, that my body officially shutdown. I called my supervisor and said I needed a two-month medical leave. She was so fantastic and immediately supported my decision. It was so sudden in the company’s eyes but a long-time coming in my eyes.

I was basically an empty gas tank.

June

I had my 8th breast cancer related surgery. It was initially revised secondary breast reconstruction due to the extensive fat necrosis that had built up in the exact area of my tumor. During the operation, they discovered not only the extensive fat necrosis but an “underlying association of a necrotic cystic cavity with an extensive capsule.” To break it down, it means I had a thick capsule around the fluid-filled sac, evidence of an old hemotoma and the extensive fat necrosis. Nothing is ever easy with me.

So the pain was much higher than I anticipated. It was the first time ever that I finished a complete bottle of pain medication.  

December

I received a new diagnosis last Thursday. I am very upset this doctor told me I have spondylitis in my spine through the patient portal. I was to call and set up an appointment for next steps. I’m furious she wouldn’t call to actually tell me what that means. So me being me, I have been researching and still have no idea exactly which type I have or anything. I went to a website called myspondylitisteam.com and found this information below.

Spondylitis is an autoimmune disease, meaning that pain and inflammation are a result of the body’s immune system attacking its own tissues. No one knows yet exactly what causes spondylitis to develop in some people, but it is now believed that genetics play a significant role.

More specific subtypes of spondylitis include ankylosing spondylitis, enteropathic arthritis, psoriatic arthritis, reactive arthritis, undifferentiated spondyloarthritis, juvenile spondyloarthritis, and peripheral spondyloarthritis.

I pitched a fit and will be seeing a different doctor at Northside but at a different location than that other doctor. It is unacceptable to give me news of a new diagnosis through the portal.

Needless to say, it’s been another exceptionally rough and painful year on many levels – physically, mentally, emotionally, professionally and financially. Even when I want to give up and just curl into a ball forever, I continue to get up each day and push forward.

I suppose that’s the meaning of resilience. Something deep within will not allow me to give up even when I’m aching to do so.

Burned Aging

I remember wanting to look older when I was in college. I used to volunteer as a reading tutor at a public elementary school my senior year. One time when I was at the school, a teacher told me to get to class. She saw me as 6th grader and not a 21-year-old senior in college. The fact I had my hair in pigtails probably didn’t help. I just recall being so upset that I was mistaken for someone so young. Now, I would give anything for that to happen again.

How come no one tells us how drastically cancer ages the body externally? Many of us internally feel older due to permanent side effects and other illnesses that were triggered by our cancer treatments and surgeries. I honestly never thought once about how much my face and neck would age.

Yes, I have always been on the vain side. Growing up in community theatre and ballet meant always looking in the mirror and looking the part. I always used to look years younger than my actual age, even in my early 30’s. This rapid aging is tough to accept because no amount of creams or concealer can fully cover it up.

I first noticed the aging of my neck. It used to be so smooth. Now it looks like lines of multilayered necklaces going down it. Quite shocking to see in the mirror. Why did I age in that area?

I honestly believe it has something to do with the radiation burns that went up the left side of my neck. I could see the beginning of lines then. I’ll never understand why I burned so terribly in so many areas (neck, back, under arm) aside from my left breast. Radiation was just as painful and horrific as chemo. This picture below still makes me cringe. By the end of my 33 treatments, the layered lines had formed completely across and down my neck. Instantly looking 20 years older in that area.

It has taken a full three years for the dark panda circles under my eyes to fade enough to where I no longer need to wear a pound of concealer to attempt covering them up. As you can see below in the pictures from three years ago, nothing could fully cover them up back then. Aside from looking fatigued, I looked…haunted.

It’s only recently that I no longer need a pound of makeup to cover the visibly aging skin. I just need half a pound instead! Seriously though, I continue to struggle with externally looking so different and just so much older. Then add medically induced menopause to the mix, and all hell has broken loose.

I don’t know my skin post-cancer. It’s dry and scaly in some areas now. The skin underneath my eyes has taken the biggest beating due to constant rubbing, new allergies to certain dye and contact dermatitis. I’m constantly trying different creams trying to find the right one to truly hydrate my skin.

Don’t even get me started on my lips! They used to be smooth too. Ever since the chemo days, I continually struggle with peeling and cracked skin on each corner of my mouth. Fortunately, my dermatologist gave me some cream that I use on my lips and under my eyes to help with the dryness. I never know what will cause another skin flareup.

It just boggles my mind that all this aging happened without zero warning. The physical changes are just so jarring. To everyone else, I look super healthy. I treat my face like a canvas. It is amazing what makeup and good lighting can do. I miss my thick eyebrows. It’s still strange to fill them in with a brow pencil. Now I’m a master at it.

Once the makeup comes off, I look a little gray, burned and forever fatigued. My face and neck are constant reminders of the trauma which is why I can’t ever NOT think about my cancer experience. It stares me in the face and plagues me daily.

My Breakup with High Heels

I braved the crowd and returned a jacket to the mall this afternoon. As I’m walking through Macy’s and other department stores, my eyes couldn’t help but see all the fabulous and sparkling high heels. They were on every corner – high heels, low heels, boots and wedges. I can honestly say my heart hurt a bit.

There was a time pre-cancer when I loved, LOVED wearing all kinds of heels. When I had my statuesque body, adding heels just added to the flair. I could strut my stuff like nobody’s business too. I could even run and do cartwheels in heels. Even when the weight started piling on, I still loved wearing my heels.

When I saw those heels today, I had a million tiny flashbacks to all the heels, especially heeled boots I used to wear. I would pretend I was on the runway and walk with long strides, swaying my hips.

Thanks to the Taxol chemo, those days are long gone. I had to breakup with my love of heels and wear flats because of severe chemo induced peripheral neuropathy in both feet. I literally do not feel the upper balls of my feet thru my toes. And do you know what I discovered? It’s super hard to find really cute and stylish flats, especially when wearing a dress or suit. That height I used to love is gone.

My long strides in heels have given way to short, quick steps in flats. I no longer feel graceful. I tried to push past my feet and make them work it in heels and fell. I still have the cute heeled booties in the closet. I wobbled so badly that it was embarrassing. Landing flat on my butt really hurt my pride.

Yes, flats are more comfortable but really missing that special feeling when finding the perfect pair of heels.

I’ve had to modify so many areas in my life post-cancer. When I tell people this, they completely invalidate me and tell me to just “try harder” or “you can do it if you push yourself more.” Neuropathy is serious, and my case is severe. No amount of turmeric, acupuncture or B12 is going to help. The nerves in my feet are literally dead. Dead. They never tingle or hurt like my hands, which also have neuropathy. My feet get super cold. I honestly believe that’s why I don’t have hot flashes while in medically induced menopause. I get cold flashes.

So, while many get dressed up for holiday parties in sparkling outfits with fabulous heels to match, I’ll be the one in the corner with the short legs in flats staring wishfully at your feet.

My Breast Cancer Story on the Brain Cancer Diaries

This is just a quick post for those who may not have social media accounts. I was honored to be interviewed on my friend’s vlog called the Brain Cancer Diaries on YouTube a few weeks ago for breast cancer awareness. If you’ve ever wondered what I sound like and wanted to hear more of my story first-hand, then click on the link below and check it out!

When Trust is Gone

Was there ever a time when one could just be the patient and trust the doctor would take time to review their chart and make customized recommendations of treatment?

I was born three months premature, so I was a sick baby and little girl. I was always going to the doctor for tests, infections and surgeries. I have fond memories of my pediatrician Dr. Tift. He always wore a bowtie and had the best bedside manner. I trusted him.

Once I graduated from college and had to find my own doctors, I was still that trusting little girl at heart. I really had excellent doctors in LA and GA during my 20’s and early 30’s. I felt like a person. I had so many issues with my ovaries, uterus, cervix and painful periods. They knew I was at risk for those cancers. I had more vaginal ultrasound action than sexual partners!

All my gynecologists over the years truly made me feel like they were doing the heavy work and monitoring my health. I trusted them.

Fast forward to the three years before my breast cancer diagnosis. All that comfort and trust was diminished.

I remember being told by countless doctors – primary, endocrinologist and dermatologist – that I was overreacting and needed to reduce my stress level and exercise. I was so angry and wondered why they made me feel like it was my fault for gaining weight, hair changing texture and falling out and irritability. I’d never been an overweight person in my life until six months after my 34th birthday. The dermatologist said there nothing she could do about my hair falling out or give me a reason. All she said was I should invest in Rogaine and eat better.

I was beyond devastated, yet I kept pushing for answers because I knew in my gut that something was very off in my body. It’s only when those tiny green bruises appeared on my left leg that I was finally taken seriously.

Why wasn’t my word and other symptoms enough to warrant concern from the start?

Why did it have to get to the point of feeling miserable and lethargic to be taken seriously?

“Oh, let’s get her a blood test here and there to shut her up,” is the vibe I consistently felt during that time until I physically felt the mass in my left breast that August 30, 2015.

During active treatment for my breast cancer, I felt heard and heavily monitored. I felt like I was a person again and not just a number. I was a well-cared for patient.

Then I enter post-treatment and just feel thrown out into the sea with no life jacket. I’m now swimming with millions pushing and shoving to be heard.

I thought palliative care would be different. I started out feeling heard again regarding my chronic pain from fibromyalgia and neuropathy thanks to chemo and multiple surgeries. I felt comforted knowing I was wrapped in this extra level care. I naively thought the relationship with my palliative care doctor would be different.

Instead, I’m consistently dealing with managing my own health and presenting outside the box ideas to help manage my chronic pain.

Get ready for my rant…

Why am I paying the copays when I’m presenting research to my doctor about new treatments for my case?

Why do many of my doctors look shocked when I make a suggestion?

Why aren’t any of these doctors’ part of cancer support groups to read what other patients go through?

Why does the doctor always ask why I’m there even though I’ve stated it in the portal, filled out the stupid paperwork and told the intake nurse?

Why are they so quick to dismiss my ideas or when I’m experiencing a side effect?

Why are they recommending medications within the same family when I’ve already shown the first option didn’t work or was allergic?

Why am I having to beg for x-rays and scans and other procedures?

Why aren’t doctors staying up to date on the latest research?

Why are doctors using Google on their phones to look up medications and the side effects in front of me?

More importantly, why aren’t they listening to the patient?

I no longer trust that any of my doctors truly have my best interest at heart. They are being mandated by insurance companies to push certain drugs. They aren’t taking the time to review my chart before walking into the exam room.

I didn’t set out to be my own doctor. I no longer have the mental bandwidth to stay on top of it all but I must because none of them will.

When will these doctors stop trying to cookie cut my treatment? I’m a square Meg who can’t be pushed into a round hole.

So, hair me out…

I’ve been accused in the past by other warriors/survivors for being attention-seeking when I talk about my hair. I had trusted three, who I thought were friends, so took the insulting words to heart. That’s why I permanently left one local breast cancer group and took a three-month break from a national one. I came back to that national one because it’s too fabulous of a group to allow certain people’s insulting views keep me away from the support I need.

Now, I’ve always been a tad extra. That’s my natural and dramatic personality. Even when I’m sad or depressed, it’s done with flair.

It’s why I took ballet and always wore my hair in buns, French braids and twists.

It’s why I basically lived at Macon Little Theatre and Theatre Macon in high school and minored in Theatre at The College of Saint Rose in Albany, NY.

It’s why I had special outfits during my salsa and swing dancing days.

It’s why to this day, I want to be an actress.

Losing my hair was even more traumatic than I could’ve ever imagined. Not only did I lose the hair on my head, I lost all the following as well:

Eyebrows

Eyelashes

Nose hair

Arm hair

Leg hair

Lady parts

Underarm

That’s why I get so infuriated when people say, “it’s just hair.”

So, losing my hair and being beyond upset and devastated has been genuine. It’s why when my hair came back that chia pet curly I always reference was so difficult to process. That’s why it’s especially hurtful when those in cancerland question my feelings.

It’s never been about vanity. I know I rocked the bald look. I also rocked the chia pet curly look. That’s called style. The anger and just utter disbelief came from not physically recognizing my image in the mirror. I’ve dealt with and continue to deal with so many issues post-cancer like weight gain, more surgeries, more scars, and don’t recognize my body at all. None of it is even remotely the same. I just wanted the hair that I had known my entire life to grow back the way I remembered it – straight and super thick.

 So, I made a video to show all the different looks of ME past and present (also posted earlier on social media). It’s MY hair story.

My Hair Story

I didn’t post it to reel in compliments. I posted it for myself, to see the progression of my hair pre and post cancer and see the different looks as I’ve tried to adjust to my reflection. I see the pain in my eyes masked with a smile in the ones starting in 2015 thru present.

I know I “look healthy” and all should be right with the world, but that is not my reality.

My friends continue die by the hands of the cancer beast – two died this week.

My mother’s treatments for her rare blood cancer continue to wipe her out.  

My chronic pain continues to be a challenge to manage.

My career in the corporate world is stagnant.

So, don’t come at me with insults or how hair isn’t important to you. Every single person’s cancer journey is THEIRS and extremely personal. I just want to claim some part of me that hasn’t been devastated by breast cancer.

I want to see ME again.

I deserve to see ME again.

When the Strong Weep 5.0

I was dealing with depression and anxiety long before cancer. Now I feel the most fragile I’ve ever felt. Just when I think I have a handle on things, everything explodes. I’ve written about this in the past. What happens when the strong need to weep? They weep alone.

I’ve struggled finding people to talk to and let my guard down, really and truly let my guard down. What tends to happen is they listen for a few minutes and then inevitably tell me the following:

You’re so strong.

You’ve got this.

Be positive.

This goes on for a few minutes until the shift happens where I become their therapist and shoulder their pain and their fears.  They assume I’ll be just fine and can handle anything.

When others can’t handle hearing your fears or darkness because your “normal” personality is sunny and zany, that’s pressure to always appear okay. That’s my current situation. Heck, it’s been my ongoing situation.

The chronic pain makes it harder to keep my emotions in-check. I no longer have the energy to keep up the appearance of being okay. I don’t get a break from what my cancer treatments and multiple surgeries have done to me. I wake up hurting every morning and go to bed hurting every night.

I’ve been very down on myself about my weight and being chronically single. I grow even more frustrated with being told the following:

Weight isn’t everything.

Dating or relationships are overrated.

You’re your own worst critic.

Not understanding my body and loneliness just adds to my depression.

Sure, I’m resilient. I don’t know where that comes from, but I somehow always get back up after being slammed to the ground over and over and over again. I’ve wanted to give up, but my nature just won’t let me.

I don’t want to be alone.

It’s not fair.

It’s not easy.

Wading through the darkness while leaping from one friend to another, sharing spurts of what’s hurting the soul but knowing there’s no one shoulder big enough to hold all your darkness is my daily struggle.

This is what strong people do.

Time Is Up PINKtober…

As October approaches, I grow angrier and angrier. Why? Because it’s now become PINKtober. We’ll be flooded with commercials and friends doing walks, wearing tutus, toothy smiles and cheers nationwide.  Breast cancer is glamourized to look pretty, easy and fun. No wonder other cancers hate us.

The media attention breast cancer gets is HUGE. The funding for it is HUGE. The awareness part is bullshit. Yep, I said BULLSHIT! A lot of that money raised from the tons of “walks for the cure” is nowhere to be seen. The bulk of these organization – yes, Susan G. Komen; I’m pointing at you – are funneling millions of dollars…into their pockets!

The wool that was once over my eyes is gone. Why? Because I’ve lost countless friends from metastatic breast cancer. I’m acutely aware that I could still get metastatic cancer. I’m not “cured.” I will be getting scans every six months for 10 years!

I had Stage IIA Invasive Lobular in the left breast. Let me give you some information on this type because it is not common.

Here’s an overview from the Mayo Clinic’s website:

Invasive lobular carcinoma is a type of breast cancer that begins in the milk-producing glands (lobules) of the breast.

Invasive cancer means the cancer cells have broken out of the lobule where they began and have the potential to spread to the lymph nodes and other areas of the body.

Invasive lobular carcinoma makes up a small portion of all breast cancers. The most common type of breast cancer begins in the breast ducts (invasive ductal carcinoma).

I’ve realized many women and men are under the assumption that if you have a mastectomy, that you’ll never get a recurrence or metastatic cancer. I’m going to take this time to educate and give some definitions for those who may not be aware or too scared to ask.

Here are the Types of Recurrent Cancer and definition of Metastatic Cancer from the National Cancer Institute at the National Institute of Health’s website.

  • Local recurrence means that the cancer is in the same place as the original cancer or very close to it.
  • Regional recurrence means that the tumor has grown into lymph nodes or tissues near the original cancer.
  • Distant recurrence means the cancer has spread to organs or tissues far from the original cancer. When cancer spreads to a distant place in the body, it is called metastasis or metastatic cancer. When cancer spreads, it is still the same type of cancer. For example, if you had colon cancer, it may come back in your liver. But, the cancer is still called colon cancer.
  • Metastatic Cancer means the spread of cancer cells from the place where they first formed to another part of the body. In metastasis, cancer cells break away from the original (primary) tumor, travel through the blood or lymph system, and form a new tumor in other organs or tissues of the body. The new, metastatic tumor is the same type of cancer as the primary tumor. For example, if breast cancer spreads to the lung, the cancer cells in the lung are breast cancer cells, not lung cancer cells.

Despite how the media glamourizes breast cancer, I still love wearing pink, tutus, tiaras, butterfly wings and feather boas. Why? These items were ALL in my closet before my breast cancer diagnosis. I’ve always been a tad extra and a Nut-Meg. When I look at those items in my closet, I don’t associate breast cancer with them except for two of the six tiaras I have. I bought one a year after I was declared NED (no evidence of disease) and the other this year for my birthday because I wanted one even bigger and heavier to celebrate that I’m still above ground.

Breast cancer has taken away so much. It’s a daily struggle to reclaim pieces of myself. My body will never, ever be the same. I’m still healing from my 8th breast cancer related surgery I had in June of this year.

I remember how financially giving so many were when I was initially diagnosed. I can’t tell you what an enormous help their generosity was for me, especially as a single woman, but the medical bills don’t stop once the cancer has been removed.

I didn’t think I would get diagnosed with cancer at 39 years old; two months after my birthday.

I didn’t realize how expensive getting scans (diagnostic mammogram with either an ultrasound or MRI) every six months would be thanks to super high deductibles.

I didn’t expect to have additional surgeries afterward.

I didn’t expect that I would be intolerant of every type of post-cancer medication to help prevent recurrence.

I didn’t expect to have permanent chemo induced peripheral neuropathy in my hands and feet to the point I have a permanent handicap sign because I can’t walk far anymore.

I didn’t expect that all these surgeries would trigger fibromyalgia and have to live with severe chronic pain every blasted day.

I didn’t expect I would still be single and can’t even think about dating or being intimate because I was medically induced into menopause at 40 years old.

I didn’t expect to long for children until the choice was taken away from me and had to get a hysterectomy and salpingo oophorectomy at 40 years old.

I didn’t expect to have these continuous cognitive issues (chemo brain).

Most of all, I didn’t expect to meet so many beautiful fellow warriors who have since DIED in the past three years.

For me, PINKtober isn’t reality. It’s made to be cute, fun and money grabbing.

The reality is we need to know the cause of why so many early stager’s eventually get metastatic cancer.  Why are so many women and men being diagnosed under 40? Why are so many with zero family history of cancer getting breast cancer? And, why aren’t there better treatment options for during active and post treatment?

That’s what needs a continuous spotlight and research.

The Cancer Call

Once you receive the “cancer call,” your life is never the same. Every plan and dream become frozen because you’re no longer the person you once were. That one call changes the course of your life.

My cancer call was 4 years ago yesterday, 9/14/15. I didn’t think I would be contacted so quickly because I’d had my biopsy on a late Friday afternoon on 9/11/15. It felt wrong and scary to have a biopsy of the mass in my left breast on such a nationally tragic day. Yet, I wanted to have my biopsy on a late Friday afternoon so I could go home afterward and not think about work or anything else. I was told the results would be available within 24 to 48 hours. Since I was the last patient of that day, I was expecting results either Tuesday or Wednesday.

So, when my cell rang at 3:05pm that Monday, I instinctively knew I should answer it even though I didn’t recognize the number. When I flashback to this memory, it’s like I’m suspended above my work cubicle watching everything unfold.

I see myself running down the hall into an empty conference room.

I see my eyes filling with tears yet widening in disbelief.

I see my hand shaking while holding the cell.

“Megan-Claire, you have Invasive Lobular Breast Cancer. We don’t know the stage yet. You need to get a pen and paper and take some notes because time is of the essence.”

Those words changed the course of my life.

Much has happened since that day. I had started to make a list but got nauseous as the list went on and on and ON. Some have an easier cancer path than others. Mine was not and is still not easy.

I’ve blogged about survivors’ guilt in the past, but it’s never far from my mind. Once you’ve received a passport into cancerland, you meet other patients across all types of cancers that you never would’ve met in your non-cancer life. I will always be grateful for the friendships I’ve made and continue to make.

The part I still can’t wrap my head around is death. I’ve posted numerous pictures of me smiling through the pain and giving a bird’s eye view into cancerland. The one view I’ve never shown is seeing a fellow warrior die from their cancer. I’d never seen death up close and personal outside of family until then. That’s why I struggle when people tell me I should be happy I’m alive and not let cancer define me. Heck, I hear those comments from other warriors, too.  

I have friends who have died and are currently dying. Some have years or months. Others have weeks or days. I carry a little piece of them with me. They have become part of my story, too.

Then I have friends outside cancerland who I never would’ve crossed paths with if it hadn’t been for my cancer diagnosis. Some are still in my life and others are not. Like that saying goes, some people are meant to be in your life for a moment, a season or a lifetime.

I’ll never forget the days leading up to and the day of my cancer call. It forced me down a path I wasn’t ready for and continue to fight.

Don’t Thin Yourself

Once you receive a cancer diagnosis, you become increasingly aware of all the different cancer awareness months for all the different types. Just because I had breast cancer doesn’t mean I’m only aware of my type of cancer. If anything, I want to learn as much as I can about all the different types of cancers now that my body is open to a possible secondary cancer down the road.

I take this time to constantly educate myself and talk with others in cancerland to better understand their type of cancer and experience. The more I talk with others outside of the breast cancer world, I find more community, acceptance and humor. Though our cancers are different, there are many shared experiences which is comforting.

So, as PINKtober looms around the corner, I start getting requests to help with breast cancer awareness.  It’s difficult when people notice a skill that makes them want you to volunteer for everything breast cancer related. Instead of it being fun, it starts to feel like work, draining and stressful.

That’s how the thinning of oneself begins. People mistake my bubbly personality and upbeat voice as ready to take on the world. It’s almost like they forget that I’m still working fulltime with increasing responsibilities, which means using even more physical and mental energy during my 8-10  hour workday. So, driving to a volunteer meeting that adds another two hours to my day takes momentous effort.

The reality is most of the time I just want to stay home munching on peanut M&Ms while watching Dateline, Snapped and some other thrillers with a handful of dramas, a dash of comedies and a pinch of romance.

It’s fantastic to be noticed but at what cost? My body can’t handle stress the way it used to.

It needs more rest.

It needs more calm.

It needs more deep breaths.

Now that I’m in palliative care to help with pain management, I can’t do as much as I used to force myself to do before. Fatigue is overwhelming. I think people outside cancerland can’t fully understand that many of us aren’t just tired. When you’re just tired, it’s implied you can sleep and feel recovered the next day. Fatigue, with the added layer of pain, means there is no recovery or waking up feeling energetic. It’s another night of tossing, turning, groaning, never finding a comfortable sleep position and waking up feeling even more drained and quite cranky.

Time to speak up and say NO. Making myself a priority feels odd and selfish. I’ve had to retrain my thoughts to accept this is true self-care and not selfish.

I was at the Leukemia & Lymphoma Society Blood Cancer conference yesterday. I went last year and was blown away by the keynote speaker Dan Shapiro. So, this year, I wanted to bring my mother in the hopes of learning more about her rare blood cancer and give her the sense of community she craves but won’t admit she needs.

My naturally bubbly and talkative self couldn’t help but engage with others and the vendors. After all, I want to start getting more speaking engagements and writing opportunities that will lead to paid ones. One of the vendors asked why I was there because she noticed my favorite breast cancer ribbon barrette in my hair. I told her I was there for my mother and am a three-year breast cancer survivor and dealing with severe chemo induced neuropathy and fibromyalgia.

She said, “You don’t look unwell. You look just full of energy and healthy.” I always find that comment interesting, especially at cancer events. Don’t they realize the sheer effort it takes to appear energetic and “healthy?”

As much as I try to take my expressive nature down a few notches, I always end up thinning myself out. Naturally being a tad extra is exhausting once I come down off the high.

It’s just another reminder for me to practice more self-care and make it routine. I’ve only committed to a few events for PINKtober instead of everything like I’ve done in the past. Thinning myself out can easily mean another trip to the ER or with pneumonia like I was in April and May of this year. I’m not looking for a repeat of that.

Saying NO to volunteering for cancer events is our right and not selfish. Don’t let anyone guilt you into saying yes either. Be firm because you’re the one who must deal with the after affects and not them.

My Reflection

I somewhat freaked out some fellow coworkers when I showed up to the work happy hour on Friday. Why? Well, I had my hair pulled back. My chemo curls were blown straight last week. I had been wearing it down at work with my usual hair accessories. I had discovered on Friday that my hair is just long enough to pull back if I use a tiny clip and a million bobby pins to hold the sides in place.

So, when I walked into Taco Mac, no one recognized me at first. The looks of surprise were apparent.


No headband. 
No fascinator. 
No hair clips.


Just pure ME.

So why did the bulk of them freak out? One of my male coworkers said he hoped I wear a tiara or flower in my hair on Monday because then I’ll “look like royal one they all know.” I confess I was taken aback by the comment. I thought I looked smashing. I looked like the ME I remember. Then I thought about it and get his comment. I believe he was trying to say the hair bling fits my big personality.

I always wore my hair up or pulled back since I was a kid, teen, young adult and as an adult. Wearing my hair in a ballerina bun, French braid, French twist, pigtails, etc. is very much a part of ME. I used to be svelte and statuesque. I loved brushing my hair and deciding which classy or cute style I would create each day. Then when I added my glasses, I was often described as the “sexy librarian.”

I’ve been working very hard to claim back some parts of ME. I’ve been recognizing my reflection more and more when my hair is blown straight. I finally see the length.  The thing is, others I’ve met post-cancer don’t recognize me this way. They don’t know what I really look liked. Everyone at work knows I’m a cancer survivor because I don’t hide it anymore. So, they either forget these are chemo curls or think they are natural.

Someone commented on my Instagram when I posted a little about this. They said, “Interesting that you don’t see your curls as feminine. I see you as very feminine, but from my view, it’s not the hair but the face.”

To me, I…and I will repeat…I think I look like a chia pet on steroids. The chemo curls make my head look huge! The height of the hair really bothers me. I can’t wear hats when it’s like this. I don’t want “big” hair. I’ve never wanted curly hair. EVER. That’s why I started wearing the hair accessories because I can’t do anything with those chemo curls. The curls are so tight, that I can’t style it. So, I added the bling to feel feminine and give myself the variety I crave.

As a birthday gift, my mother is paying for me to get the chemo curls blown straight 2x per month. Any time I mention this, I always get those saying to get a keratin treatment or sending me pictures of the hair tools they use. Well, I don’t have the physical strength to blow these suckers out. They are TIGHT curls. It takes a lot of arm strength, technique and patience that I don’t have but my stylists do.  

How come no one sees I’m playing a character when I wear my bling? The character of a cancer survivor who doesn’t recognize herself or her body.

I’ve never once felt feminine with the chemo curls unless I have a hair accessory. Notice I never say ‘my’ when I refer to them. To me, they aren’t natural. Poison changed my hair chemistry, not me. It wasn’t MY choice. Why can’t others get that? I’ll say it again. It wasn’t MY choice to have curly hair.

I get sooo many people telling me how cute they are. If they were loose curls, maybe I would agree. I always feel the need to tell people what I used to look like and show the pictures as proof. I wasn’t always this overweight woman with a tight, curly ‘fro. I was fit, classy and stylish.

Am I happy my hair grew back? Of course, I am. Did I think it would grow back entirely different from what was my norm? No. So, I can’t stop being surprised and dismayed every single time I look in the mirror when the chemo curls are there. It’s not what I know.

I’ve always been a tad extra from birth. Adding a hair accessory doesn’t change that. It’s strange the more I’m starting to look like ME with my hair blown straight, no one else seems to recognize me.

My life on the cancer train lately is confusing, painful and disappointing. Yet, it’s also been liberating because I am beginning to see a reflection that is familiar.

I am seeing ME, even if no one else does.

Craving My Truth

As much as I love to socialize, I’ve been craving solitude more and more. I have limited energy. In some ways it makes me sad because I do love to talk, but my naturally expressive personality now wears me out. What many people don’t realize is cancer ages the mind, body and spirit.

My mind has been in utter chaos as I’ve tried to process my cancer experience. I wish I could forget the ugly parts of my cancer path. The thoughts and grief refuse to be swept under the rug. They continue to bubble and boil to the surface.

I still can’t fully verbalize all I’ve experienced and continue to experience. That’s why I write and started blogging. All I can do is continue to raise my voice and shed light on the difficulties of a cancer diagnosis. The fear, anxiety and anger never fully disappear. It sometimes moves to the backburner, but never gone.

I had become dependent on Ativan for sleep. My psychiatrist at the time kept enabling me. It took me two years to recognize that fact. Instead of helping me process, she was trying to keep in a sedated frame of mind. I finally saw the light this year and terminated the sessions and weaned myself off the Ativan. It was difficult and definitely caused additional stress to my immune system.

After I finished chemo in February 2016, I was shocked by how old I looked. Dark circles like a panda, pale gray skin and lines like a turkey around my neck. Heck, even my hands looked old. My baby face was gone. What I noticed most was the look in my eyes.

They looked haunted.

They looked pained.

They looked scared.

I still don’t recognize this body. So much has physically changed. The chronic pain wears on my patience. I can’t just get up and go, go, go like I could in the past. Every move is slow and deliberate. I don’t want to fall. I have a permanent handicap sign thanks to neuropathy.

My spirit has also taken a beating. I don’t ask why I got cancer. It was inevitable, especially after looking at my family history. I ask more why did I get cancer under 40 and still alive? I see others whose cancer has metastasized with significant others and families. Why have I been spared – the single cat lady – and not them?

Life post-cancer continues to be a daily struggle. There always seems to be a new pain or issue or unforeseen medical bill popping up.

I crave stability.

I crave my truth.

So, I wrote a poem that was originally crafted using a writing prompt from the Unspoken Ink Writing Class through Lacuna Loft. I finished it this morning.

Until next time,

Warrior Megsie

Is dating off the table?

This question is more complex than it was before cancer.  I honestly don’t know what to think anymore. I’ve heard of others meeting “the one” during treatment and after. I’m boggled by that.

Who has the energy?

Who has the sex drive?

Who has the funds?

I’ve been a body I don’t recognize since my 35th birthday, which is when I believe the cancer started growing. That’s when my thyroid got out of whack and major weight gain occurred. Even though my energy was somewhat lacking, I was still dating back then.

I’ve had my heart shattered once and deeply hurt once. I had begun to date myself and take time for personal growth when the cancer beast reared its ugly head. Dating was not even a remote thought once the cyclone of appointments swept me up.

I’ve been 43 years old for a month and starting to feel lonely. My life has been so busy trying to heal, battling long-term side effects from chemo, surgeries and radiation, serious depression and anxiety, chronic pain, medical leave, then more surgery and now I’ve had time to really process all that has happened since the cancer call on 9/14/15.

Things won’t magically become all right once I meet the ‘right’ guy.

I can’t expect to find happiness through someone.

I can’t keep waiting for someone to take care of me.

I don’t think like the woman I once was either. I’m jaded. I don’t even watch romance movies anymore. I used to be a sucker for those. I don’t read trashy romance books anymore either.

It’s like a light switch was turned off once I was medically induced into menopause at 40. Losing so many body parts all at once did something to me. I feel hollow. The only thing that makes me still feel like a woman are my tears.

I hear all the time “the right man will love you at your worst.” Well, I think many of you will agree that men are very visual creatures. Sure, I have a pretty face, but not a pretty body.

My body is scarred.

My body is numb in certain areas.

My body radiates and burns with pain.

My body is out of shape and struggling.

My body is utterly fatigued.

How can I date in such a low physical state? It was hard facing rejection when I was stick thin. I sure as hell can’t handle rejection looking and feeling like this.

I also realized that I can’t date a regular guy. I’ve nearly died. I’ve been through something life shattering and life altering. How do I make small talk about trauma? I don’t think lightly anymore.

Does that mean I need to meet someone also has/had cancer in order to relate? Hmm…

Until next time,

Warrior Megsie

A Cancer Triple Threat

For those in the theatre world, you know what that term means. For those not in the theatre world, ‘triple threat’ means you can sing, dance and act. Well, in terms of the cancer world, it means I have neuropathy, fibromyalgia and chemo brain happening at once. I knew I was talented, but this takes it to a whole new level.

I start off each morning with a painful and groaning performance before I even get out of bed. It’s usually been a fitful night of sleep tossing and turning trying to find a comfortable position due to painsomnia. That’s when I access my pain level for the start of my day. I do some stretching to get some circulation flowing, especially my ankles. I have no feeling from the upper balls of my feet through my toes. Zero, nada, nothing. It’s been that way since my very first Taxol chemo treatment. I didn’t know neuropathy could be this severe and happen so suddenly with that first treatment. The permanent damage was done. No acupuncture will help.

Then I move my fingers and warm them up. I have neuropathy in them, too. The nerves are still regenerating in them because I feel tingling and many times stabbing pain like little needles in them, especially when I’m typing, like now. From there I move my head side to side and then stretch my legs.

Now I’m ready for my walk across the stage, aka the bathroom. I always have my cane next to my bed. I wake up with the fibromyalgia pain and osteoarthritis in my knees every day. Lately my hips have been in immense pain. We all know the hips don’t lie.

The groaning turns into a full on one- minute monologue of expletives as I make my way across the stage, hunched over like the Elephant man and holding onto my cane for dear life. Sometimes my fibromyalgia chronic pain is all over my body. It can often feel burning, especially my lower back, legs and arms. Then, of course, the extremely tender points on my neck and shoulders. It can move into my hands as well. That’s the thing about fibromyalgia, it can move, so I never know what to expect each day. The one major chronic pain area that I never, ever feel a smidgen of relief is my lower left back since that blasted hysterectomy/oophorectomy in 2017.

I’m fully awake now and ready for the pièce de résistance. I walk across the stage, aka the living room to the kitchen, with my usual straight posture from years of ballet and musical theatre but slow and short steps because my balance is still off. I see my many post-it-notes, notepads and planner filled with lists and reminders of things I need to do, to buy and to respond to. If I have something super important that I must remember to do that day, I always put a post-it-note on my front door above the locks, so I’ll see it.

I’m already exhausted and haven’t even driven to work yet. That’s my life in the spotlight of being a cancer triple threat.

Until next time,

Warrior Megsie

It’s a troubling world

This world is troubling on so many levels. I can typically handle one thing at a time but not a total shitstorm within two days. I will go ahead and warn this piece will talk about race in relation to cancer.

Believe it or not, race plays a part in the cancer experience. I’ve dealt with many nurses, staff at cancer support communities and fellow warriors in online support groups who automatically assume since I’m black that I must have triple negative breast cancer. They have sometimes talked down to me.

No, this is not my imagination. This is not me being overly sensitive.

I blogged about this particular incident when I first started my blog in November 2017. It’s worth repeating. Some will innately get the insult and frustration. Others will not see why it was a big deal. All I can do is speak my truth.

It was almost a month after I started chemo in October 2015. I decided I needed help processing what was happening. I’ve always been a big supporter of therapy and support groups. I’m a talker and like to talk things out. At that time, I didn’t know any other 39-year old’s going through this. I needed support.

I went to the Cancer Support Community in Atlanta, GA. In order to join a group, there is an intake session with one of the staff members. I had spoken with her on the phone and was really looking forward to meeting her. I was already fatigued, nauseous and had worked a full day by the time I arrived. I was expecting to feel relaxed and heard.

The woman, who was white, gave me paperwork to fill out. Once done, I handed it to her, and she reviewed. This is where my frustration begins.

She asked, “Are you sure you’re not triple negative?” I was puzzled by the question. I knew what my diagnosis was, and it was stage IIA invasive lobular breast cancer. Maybe she couldn’t read my writing, even though my writing is very neat and specific.

She asked again, “I just want to double check. Are you sure you’re not triple negative?”

This time I was annoyed and responded back sharply, “No, I wrote my diagnosis. Why are you questioning my answer?”

She said, “Well, most African American women who get breast cancer are triple negative. It’s very prevalent in your ethnic group.”

Now, her questions would’ve have been appropriate if I didn’t know my diagnosis or specifically asked about what type (s) of cancers are prevalent in the black community.

Only, I specifically wrote my diagnosis and verbally told her what I had, yet she still questioned me like I didn’t have a clue of what I was talking about.

It was that moment I realized she didn’t see me as a cancer patient. She saw me as a BLACK cancer patient. Understand the distinction?

Every question from that point was about race. I was there to talk about cancer and not the black experience. I left shortly after that exchange.

Cancer does not discriminate, so why was she?

Let’s fast forward to today.

Many cancer patients, whether in active or post treatment, spend much of their time going to the pharmacy to pick up medication. This pharmacy doesn’t have a drive thru. I was at Target. I needed to pick up my refill of the arthritis medicine. Yes, I have arthritis in my knees and hands. That’s a story for another day.

Though I was only there to pick up my medication, I got a cart to lean on since my fibromyalgia pain is a 12 today. There was a line and no place to sit down.

There was a white mother and her young son in front of me acting up.

She said, “See this BLACK woman? If you don’t hush, she’s going to hit you with her cart.” The kid starts crying. I’m speechless. I saw first-hand how racism is taught. 

Now that little boy will associate black/brown women as harmful, cruel and punishing.

I was paralyzed and slowly backed away and went to another part of the store for a bit before circling back to get my meds. Keep in mind, there was a white woman behind me who witnessed this whole thing. She was conveniently looking down at her cart, not wanting to get involved.

I’ve experienced lots of racism but never in front of an impressionable child where a mother is saying because of my skin color that I would hurt her child.

I’ve even had the same thing said to me at a different pharmacy but that white woman said, “See THIS woman? If you don’t be quiet, she’s going to hit you with her cart.” That happened earlier this year.  

What is it about threatening kids with carts?

I did say something in that instance, and she did a double take when I said it was not okay to say that.

This time was different because this white woman specifically mentioned my skin color. That’s why I felt paralyzed.

I posted this incident on my social media this afternoon. I received many comments of my friends, many white, saying they would’ve stuck up for me and said something to that racist woman. If I were a white woman, I think I would’ve said something.

As a woman of color, I knew to keep my mouth shut and walk away. There is no reasoning with people who have that mindset of hate.

Until next time,

Warrior Megsie

State of Acceptance

Yes, I’ve stared the cancer beast down and still gracing the earth with my presence, but at what cost? I get asked all the time, “How are you feeling?” and “Feeling any better?” and “Aren’t you happy to be alive?” and “You beat breast cancer!”

The cancer beast still has its claws digging into my flesh, my very existence. The number of health issues and pain I now live with are a direct result from my cancer treatments. I grow tired of the saying, “Make lemonade out of lemons.” At this stage in my life, I’m having to grapple with so much permanent physical change that I constantly feel like the wind has been knocked out of me. I’m gasping for breath yet yearning for control.

For me, I can’t just close the 22-month long breast cancer volumes and move on. Why? It’s because I wake up every day in horrible chronic pain caused by the treatments and surgeries that are currently keeping me alive but not living or thriving.

What throws me for a loop is I was starting to come to terms with the permanent neuropathy in my hands and feet. I was making it work. It was a 1 ½ years after being declared NED that a different and more excruciating type of pain started seeping into my body.

I kept going to my primary and different specialists asking where this pain in my lower back was coming from. Then I noticed my pain would shift without warning to my arms or upper back or legs. A friendly pat on the back or arm would cause me to wince. I started getting frequent headaches. I would tell this to my doctors, and they would say I’m just healing from all the treatments and surgeries. They ran blood test after blood test, costing me hundreds of dollars and each one came back negative.

I knew something was seriously wrong.

I went to a pain management center, but all the doctor wanted to do was put me on opioids. I didn’t want to go that route. I still didn’t feel like I was getting to the root of the problem and felt they were trying to mask the pain.

It wasn’t until October 2018 that I met an amazing rheumatoid specialist at Emory University Hospital in Atlanta. I researched rheumatoid specialists online and came across his name. His reviews are stellar. His background impressive. I decided to try one last time to be heard and see what happens.

It’s an indescribable feeling when a doctor actually hears you and sees you. That’s exactly what happened in his office in that first visit. By this point, I was crying every single day from the pain, all while continuing to work. He looked me into the eyes and said, “We’re going to get this figured out.”

After more in-depth blood tests, they came back negative. It’s at that moment he mentioned Fibromyalgia.

Fibromyalgia is a neurosensory disorder characterized by widespread muscle pain, joint stiffness, and fatigue. The condition is chronic (ongoing), but pain comes and goes and moves about the body. The disorder is often misdiagnosed or unrecognized and is and often complicated by mood and anxiety disorders. Exact cause is not known.

It has been described as Central Pain Amplification disorder, meaning the volume of pain sensation in the brain is turned up too high.

I’ve been pouring over blogs, articles and abstracts relating to chronic pain during my two-month medical leave from work. Before I could accept what’s happening to my body, I had to first understand how and why fibromyalgia was triggered.

The onset was triggered by the hysterectomy and bilateral salpingo oophorectomy I had on 2/15/17. I never fully comprehended on how major of a surgery it was or for my body to handle after going through breast cancer. It caused so much additional trauma to the body that it triggered the fibromyalgia.

Then after more research and watching the fantastic, heartbreaking and informative documentary Unrest on Netflix, I went even deeper and have determined this chronic pain would’ve made its presence known eventually. Though my case isn’t as severe as those in the documentary, it did give me a greater understanding of my body and reframe my mindset.

I had trauma to my system from birth. I was born three months premature and weighed 1 lb. 5 oz at birth. My mother had ovarian cancer during the pregnancy. Her medical team predicted we would either both die or only one of us would live. We defied the odds, and both lived. Aside from extremely low birth weight, my lungs collapsed, grand mal seizures and benign tumor on my right leg. I still have that scar.

The pain and trauma I experienced at birth remained dormant until the major surgeries shocked it back into existence. Of course, I would’ve preferred this happen in my 80’s rather than my early 40’s. At least now I can make more sense as to why I’m dealing with chronic pain now.

I’m finally, finally in a state of acceptance and acknowledge my limitations. I go back to work on tomorrow, July 8th with accommodations requested. I have to do what I must to keep working but also protect my delicate immune system and keep my pain tolerable.

After all, chronic pain never goes away. There is no relief. All I can do is keep it tolerable. It’s mentally and physically draining. I can accept this way of life now, but that doesn’t mean I like it.   

Until next time,

Warrior Megsie

What the hair?!

I’ve been on cloud nine since my mother gifted me an early birthday present (b-day is July 3rd) of getting my hair blown straight 2x per month for a year. I’ve hated and still don’t understand the chemo curls. Then it hit me as I stared at my reflection this morning after washing my hair and seeing the curls form again. I no longer understand my hair curly OR straight! WTF?!

I know the chemo curls look darling and such. To me, it’s a constant reminder of how unnatural they are and what they represent – the 4 AC and 12 Taxol that nearly killed me. I suffered extremely painful side effects during that hellish five months. Fellow warriors kept telling me the chemo curls were temporary because they had them and then went away. I’m three years post-cancer. Why are they still here? Are mine truly permanent?

I used to have super thick straight hair pre-cancer. It was almost to my shoulders. I could do so much with it – French braid, French twist, ballerina bun, pigtails, ponytails and the list goes on and on.

During that first week of my hair blown straight and seeing the length, I could not stop beaming! I had stopped flinching when I saw my reflection. I recognized this straight hair. I couldn’t believe those tight curls were this long straight.

It is this second week when I realized this straight hair is completely different, too. It’s so much thinner than before. I’m rusty at using my flat iron and products to keep it smooth. The sides are still short. How do I style it, so I don’t look old?

I purposely haven’t worn a fascinator in my hair for two weeks, which has been my trademark with the curly hair. I’ve just worn some snazzy headbands, barrettes and combs. I wanted to see how different I looked without them.

I wanted to feel like ME again.

I wanted to look like ME again.

I can’t even believe I’m saying this but…I STILL don’t recognize ME. I thought wearing my hair straight again would feel natural and complete. My hands can barely hold the flat iron because of the neuropathy. I couldn’t even remember how to braid a few strands. This straight hair is different too.

I will never understand those warriors who say hair doesn’t matter. They completely invalidate the emotional toll losing hair creates and when it grows back entirely different from what we once knew. It DOES matter.

As I washed my hair this morning, it was strange to feel the curls take hold as the water flowed through it. I went in with straight hair and came out with those chemo curls. When I looked in the mirror this time, I still saw a stranger.

Now I fully see that I will NEVER physically look how I did pre-cancer. I’m not the same externally. My weight is up again. My face is fuller. My thick eyebrows are gone and must be drawn. I deal with chronic dermatitis on my eyelids. The corners of my mouth are often dry and cracked. I still have dark circles under my eyes. My lashes aren’t as long as they once were.

That’s a harsh dose of reality I wasn’t prepared to swallow this morning.

Me pre-cancer
Curly vs Straight post-cancer

Until next time,

Warrior Megsie

Raging Against Myself

I’ve had many issues arise before my leave of absence from work and during that were beyond my control and have caused full blown panic attacks. I seem to need more and more time alone in pure silence to calm my thoughts and breathing. Then I thought about how I’m like that 90’s band name Raging Against the Machine. Only, I realized that I seem to be raging against myself.

Why?

Going through cancer while single has literally thrown me off the ledge. Let the rage fest begin.

I rage over constantly fighting my body to just function properly.

  • I can no longer just get up and go anymore. It takes so long to get ready in the mornings because of the chemo induced fibromyalgia and neuropathy. I never thought I would have to deal with this level of chronic pain on a daily basis. There is no real relief from it.

I rage that my life continues to be difficult without breaks. The hits never seem to cease.

  • Just when I think the pieces on my path are finally aligning, I get hit with another problem or infection that causes me to take three steps back instead of forward.

I rage over the never-ending medical bills post-cancer.

  • Why aren’t there more financial resources for post treatment? I found so many grants to help during my active treatment and one-year post but nothing now that I’m three years post. These are lifelong struggles which require many doctor appointments, tests and medications. The financial strain on a single income is suffocating.

I rage over being chronically single with zero strength to even ponder dating again.

  • I honestly don’t think I can ever date again. I have a zero-sex drive. I’m in freaking menopause. I don’t even want to be touched because it hurts thanks to the fibromyalgia. Plus, how I can date someone in the regular world ever again? It was hard enough pre-cancer to find a good fit at the right time. I can’t even have regular conversations because it always reverts to cancer.

I rage that any PTO from work has never been used to take a vacation and have fun. Instead, those days are used for doctor appointments, surgeries or sick days. 

  • How ironic that I finally had to request a leave of absence from work because my body literally gave up on me. I’ve been hit with an infection and chronic pain every single month since October 2018. No wonder I basically keeled over and couldn’t go on. Will my immune system ever be semi decent?

I rage over our healthcare system and having to fight the billing departments from multiple cancer centers and question or review charges.

  • The visceral stress from opening the mailbox and seeing a billing statement and/or invoice almost daily wears on me. Plus, I already pay such a high deductible. I don’t have the strength to work multiple jobs and gain multiple streams of income by myself. It takes everything I have to go work for 8-10 hours a day.

I rage over the hundreds of times I’ve had to advocate for myself to be heard with doctors.

  • I’ve been treated at multiple cancer centers and have seen multiple oncologists and specialists until I was finally heard. I’m sick of so many saying, “That doesn’t typically happen to cancer patients” or “I don’t think this pain is from your treatments.” When are these providers going to learn that every BODY is different? When will they realize they don’t fully understand the long-term side effects that stem from chemo and radiation?

I rage over those inside and outside cancer land who try to “fix” my chronic pain with essential oils, supplements and more unsolicited advice.

  • I’m disgusted by those who give unsolicited advice and think they have the cure to end my chronic pain or whatever else is going on. It’s like these people think I haven’t already tried many of the things they claim “cured” them. Why can’t I just talk about it? Why do I have to justify to non-medical people why I don’t want their unsolicited advice?

I rage over the family life I never knew I wanted and now can never have thanks to my cancer treatments and being medically induced into menopause years ahead of schedule.

  • When your choices are essentially taken away, the grief of wondering what could have been is palpable. It’s so hurtful when people tell me to foster or adopt. It’s like they completely ignore the fact that I am single!!! I can barely take care of myself and my cat, let alone be there for a child alone. Show some sensitivity! Hear me instead of trying to make me feel better.

I rage over physically looking like a completely different woman with these chemo curls. They aren’t natural to me.

  • I truly struggle over “this hair.” Sure, I know it looks cute like a baby giraffe, but it is NOT my natural hair!!! I didn’t grow up with naturally curly hair. Chemo did this, not nature. I didn’t ask for this. The PTSD I feel every single time I look in the mirror tightens my chest and causes tears. My thick eyebrows pre-cancer now must be filled in with a brow pencil. I don’t care that no one else sees the flaws and damage. I am the one who must live with them.

I rage that the treatments, surgeries and pressure to work full-time have visibly aged my face and body by at least five years.

  • It took over two years for the dark circles to fade. I’m in a constant state of fatigue. It shows in my face. My former baby face has been through an unwelcomed war. I see the wear and tear it has caused.

I rage that I no longer know why I’m fighting so hard to stay in this world with no physical legacy.

  • I feel survivors’ guilt so deeply after hearing someone is diagnosed as stage IV and have a husband and children. So, what about those single, childless people? What do we have to live for if not family? Why should we keep fighting to exist in pain when there will never be children or grandchildren? Who do we share our memories with? What is our purpose?

Finally, I rage that after all these years on earth, I’ve become what I always feared – alone and ordinary.

  • How do I stop having survivors’ envy? I see so many survivors running marathons, jumping out of planes, traveling and other really physical activities when I can barely walk the two-mile trail in the park. Why didn’t my body heal and become stronger? If anything, I feel I get physically weaker each day. How is that surviving and thriving?

Though I often feel alone with my rage, I know there must be others who suffer through this in silence. I wish I had the right coping skills to help all of us get through the daily insanity. That’s the hardest part. I want to take action but don’t know how. My current therapist says I’m doing the right things to cope, but I often don’t feel like I’m doing enough. Is this it?

I rage because at the end of the day, I just want to matter and be remembered and LIVE instead of just existing.

Until next time,

Warrior Megsie

Lessons learned from falling over the edge

Last week was another tough one to get through. I’ve been having difficulty getting my short-term disability claim approved. What set me over the edge was a call from the benefits specialist last Wednesday. He’s the one assigned to my claim. He received the paperwork from the Northside Primary Care office but was surprised by the physician’s statement. All she wrote was I was suffering from anxiety, depression and bipolar. WTF?!

I literally lost it for a few minutes. She mentioned nothing about the chronic pain, chronic fatigue or the number of infections I’ve suffered almost every month for the past six months. I felt betrayed. I felt like I had punched hard in the gut. Why?

I posted in my Facebook cancer support groups of what transpired to get thoughts on it. Many said maybe she was trying to set me up for permanent disability or maybe she wrote the wrong thing and it was meant for another patient. All those comments were disheartening and concerning. I had left messages for the doctor and her nurse via phone and through the portal. No response.

Why would a doctor write this and not notify me first?

Since Monday was a holiday, I let it go. I called first thing on Tuesday and asked to speak to her supervisor. In the end, I spoke directly with the clinical director. He said he would review my case, speak with the doctor and get back to me later that day. I was impressed because he kept his word and called that evening.

He explained that she wrote that diagnosis in her physician’s statement in order to get me approved. I said that all well and good, but she did not reference anything else. He agreed she should’ve notified me what she planning to put in her statement. The issue is nothing she said backed up what Emory Palliative Care and I wrote. How could she leave all the rest out?

The clinical director was impressive. He told me he would call my benefits specialist to clear up any confusion and send whatever additional paperwork that was requested. He told me he would call me Wednesday.

I received the call yesterday evening. The clinical director told me what he said to the benefits specialist, that my claim is being reviewed by the insurance’s doctors and now waiting on a decision. He answered all questions, kept that original doctor’s diagnosis and added the rest of what we discussed.

I told him the issue is the doctor never notified me or returned any of my calls. He agreed. At that point, I felt heard and can let this go. I did tell him to notate in my file that I never want to be treated by that doctor again.

So, now I’m waiting on a decision from the insurance company. I’ve been without income going on four weeks. Thank God for my previous church and my mother. That’s the only reason I can even breathe and finally not stress. Do I feel guilty and ashamed for asking for financial help? A little. I also know when to let pride go and ask for what I need.

My emotions are finally stable again thanks to Lexapro. I realized last week that I needed to get back on an antidepressant. I needed that buffer it gives me to handle the intensity of my emotions. I didn’t want to and fought it at first, but know I made the right decision. The Lexapro in the morning and CBD oil with THC in the evening helps take the edge off.

Putting my health first continues to come at a cost. I was born premature and sick from birth. It’s exhausting and expensive taking care of myself. There have been moments where I’ve felt strong and even invincible. Those days are long gone.

All I can do now is prep for my surgery on Monday, work on understanding this chronic pain and taking care of my mental health. Maybe that is the lesson I needed to learn. I can no longer continue to let these difficult and painful hits to my life completely through me off course and into a tailspin. I need to stop being so reactive so I can focus on being proactive.

Until next time,

Warrior Megsie

This isn’t a dress rehearsal…

There were many ups and downs this week. The past three weeks away from work have been spent in hours of solitude, writing, doing some fun things, working on my mental health and having honest conversations with myself.

My rage has been turning me into a very negative person. I really heard it this week. There are trigger phrases that multiple people have said which cause me to viscerally react.

The face of chronic pain will be smiling, laughing and joking. That’s why I bristle when someone says, “You look fine.” What is chronic pain supposed to look like? Do people really think I’ll let them see me hobbling and crying? I will always “look fine” because I mask it from you.

  • What you don’t see and will never see is how I barely sleep.
  • What you don’t see is I need a cane to get out of bed most mornings.
  • What you don’t see is the nausea that hits in the morning and afternoon.
  • What you don’t see are the tears as I get in and out of the shower, praying I don’t fall.

I can’t stop being me and enjoying myself. How is that fair? I keep trying to tame myself because being ME takes a lot of energy. It’s strange that I wear myself out just acting natural.

I’ve always been a proponent of therapy. This isn’t new for me. I’ve suffered from depression and anxiety since I was in high school. The difficult part is finding the right therapist. The fact is a regular therapist won’t work. I need one specialized in chronic illness, who is trained to handle and recognize those added stressors.

My therapist at Emory Palliative Care told me I am coping well. I guess I feel like I should be doing more. Is that the over-achiever in me?

Here’s what I’ve been doing:

  • Made the first step in putting my health FIRST.
  • Made a list of things I want to do that feed my soul creatively.
  • Started journaling and writing more frequently.
  • Unplugging from social media and spending time wrapped in silence.
  • Going to some survivorship programs.
  • Having honest conversations with myself and asking what I WANT.
  • Trying to figure out my limitations.

I’ve also had people asking me if I’m “enjoying this rest.” This time away isn’t a vacation. I’m still highly stressed because my short-term disability hasn’t been approved yet. These constant hurdles to try and take care of myself is causing additional stress. It actually exacerbates my pain, which is not good. I will only rest once I know my bills will be paid.

I bring up being single a lot because it affects so much of my care.

I realized last evening that my biggest fear in my adult life already happened – diagnosed with cancer while single and having to work. The pressure to keep a roof over my head, mounting medical bills, regular bills, upcoming surgery, doctor appointments and medication truly wears on me. I really thought by this age I would’ve met “the one” and have a partner to help ease the pressure.

Getting cancer took away precious time that I’ll never get back. That’s a tough pill to swallow. I’ve literally lost three years of my life to intense stress and fighting to stay alive.

I constantly hear how “stress can kill,” yet no one has solutions of how to keep it low when you’re single.

The toughest challenge I have now is coping and living with chemo induced fibromyalgia. None of my doctors prepared me for the possibility of chronic pain. That’s why I’m in a rage. I kept going to different doctors and specialists until one finally heard me and gave me that diagnosis.

I’m devastated. I need more purpose to get me out of bed each day. I need to find a way to turn my advocacy, blogging and speaking into a career.

I’ve heard from many warriors to “not let cancer define you.” Well, it HAS defined me. I am no longer who I was physically. It has taken so much from me. It HAS changed me.

I may laugh a lot on the surface, but if you look closely, you’ll see the pain and grief. I know that’s why I toggle between rage and negativity. I’ve never dealt with this kind of pain and grief on a daily basis.

My soul is so weary. I long for the day when everything works out and I CAN truly rest and rejuvenate. I want to be able to float instead of struggling to keep my head above water. I deserve to feel free and supported.

So, this isn’t a dress rehearsal. This is real life. I’m giving the performance of a lifetime.

Until next time,

Warrior Megsie

Must shatter to discover the woman I need to be

I was in my Unspoken Ink writing class last night with my Lacuna Loft warriors. Below was one of the prompts, which ties perfectly into what I am experiencing right now.

{We are all broken, that’s how the light gets in} Ernest Hemingway

•Bouke de Vries, Peacock I•

Broken is too benign a term. I’m currently shattered. I’ve been giving away too much of light without much in return. I was no longer running on empty or even fumes. I officially stopped running last week.

You know that saying, “Growth and change comes from discomfort. You have to be comfortable being uncomfortable if you want to be extraordinary.” Well, that’s my current stage.

I grow tired of being told I’m so strong. I’ve had to be strong my whole life. I’ve always been an outsider and never really fit in anywhere except when on stage. There’s nothing better than being in the spotlight whether it’s actually performing or giving a speech.

That’s where my true light within starts to shine.

I’ve literally been a swag MEG trying to fit into a round hole. I didn’t take the risks I should’ve taken after college.

Then I get cancer. I pushed through it with humor, but deep down, I was losing myself. How do I grapple with almost dying?

Jump ahead three years later, I’ve been slammed with hit after hit of infections, chemo induced neuropathy, chemo induced fibromyalgia, shingles, severe dehydration, vertigo and now pneumonia. Getting pneumonia was the last straw. I knew I had to make some serious changes, or I would die.

I had to allow myself to completely shatter. I must understand the woman I am now.

I’m chronically single.

I’m childless.

I’m in chronic pain.

I’m grieving.

I’m angry.

I’m depressed.

I’m traumatized.

Somehow, through all this, the winds of resilience keep pushing me forward. There is a glimmer of hope shining in the distance. It’s not totally bleak.

I took a major step that I’ve been scared and uncomfortable to do for some time. I told my boss that I needed to take a two-month leave of absence to work on my health. I still shake thinking about that call on Monday. It was difficult to ask for what I need but had to be done.

I’ve never shattered in such a visceral way on so many levels at once. This is new to me. It’s painful and ugly. I do believe it’s the chronic pain that shoved me over the edge.

I often get asked how I feel. Those who have been through cancer get asked this question a lot and struggle with how honest we should be when answering. I want to scream to stop asking me how I’m feeling! Then I feel like a bitch for snapping.

Don’t people see there is no real relief from chronic pain? The level of it might be less than even the hour before, more tolerable, but IT NEVER LEAVES. I’m literally in pain every blasted day. It wears on me, especially since I am single. I don’t have a husband, boyfriend or kids to help clean, cook or even bring me a glass of water because I’m finally in a good position and know moving will hurt like hell.

That’s my “new not so normal,” and it sucks. I beat cancer and this is how my body decides to react? I’m NOT thriving. If anything, being naturally me, who is always a tad extra, wears me out.

I still get that “survivor envy” of others who seem to be physically excelling where I literally can’t. The CBD oil with THC only helps manage the pain but doesn’t completely take it away. I want to run marathons, relays, climb mountains, etc. I want to feel physically strong again.

I miss my 34-year-old body. That’s the last time I felt strong and was fit. I push through my pain every blasted day just by getting out of the bed and into the shower. As someone who used to perform musical theatre, ballet, salsa and swing dance, I need to get movement back into my life.

Then I remember the severe neuropathy especially in my feet. No amount of acupuncture or supplements or meds will help. The damage is permanent. How can I be dancer without feeling my feet?

So, I’ve shattered and discovering ways to put my pieces back together. I plan on going to some local survivorship programs to work on coping with the permanent damage caused by my cancer treatments. I also need to feed my creative soul again. I refuse to die on a bed of regrets when I have all this talent that sits behind a desk day-after-day.

I’m meant to be on stage. I am determined to figure out how to make this happen. After all, I’m not dead yet. It’s time to stop acting like I’m dead, and somehow claw my way back into the land of the living.

So, I’ve allowed the winds of resilience to fully take hold and push me forward. Time to heal my body and get to know it so I can start pursuing what I was always too scared to do.

Until next time,

Warrior Megsie

Chronically grieving, single and in pain

Grieving again today. I thought I had picked myself back up, so this uncontrollable crying spell this afternoon came as somewhat of a shock.

Though I have left the Catholic church, I have never lost my faith. So, I decided to go to a non-denominational church this afternoon. I really loved the music and the message. During the service, my left lower back started burning. I tried to block it out and focus.

After the service, I decided to have a look around. I was amazed by the number of volunteers, members and beautiful facility. Then my heart dropped.

Seeing the number of families and all the kids in their fantastic kid’s area was a slap to the face. I will never experience a family the way I had always dreamed. What continues to crush me is it wasn’t MY choice to be medically induced into menopause at 40. It’s not a choice when your medical team tells you due to carrying the ovarian genetic marker, family history, intolerant of medications, and my own personal issues with my cervix and ovaries pre-cancer, this is the only way forward.

My mother found these pics today. I was 29 in the pink. So weird to see my natural black hair. I usually wore my hair up in buns, French braids and twists. When I was 29, I still believed in love and that I would have at least one child. I continue to get offended when women especially mention adoption or fostering to me. I know they mean well, but they aren’t hearing me. If I were married or seriously involved with someone, the conversation would be different.

I’m single. At this point, chronically single. I can barely take care of myself and my cat Nathan post-cancer. I have zero energy to even try dating. I look so physically different now. How come some other warriors got their bodies and hair back? I literally look like an entirely different person.

A friend mentioned that I looked “untried” in my younger days. I have been through many, many trials without it physically altering my inside and outside appearance. I’m an onion with tons of layers. You can bet there are some struggles I’ve never openly revealed on social media.

My weight is slowly starting to go down again. That 1 1/2 months on the prednisone really did a number on me. I can tell my appetite is finally back under control. I’m not having intense cravings. I want to actually plan and cook my meals. My thyroid is normal. I’m not even pre-diabetic. Heck, I’m not even anemic right now.

The chronic pain got out of control, and I couldn’t workout without crying in pain. This is another big struggle. I’m realizing that chronic pain is unpredictable. I can feel semi-decent one day and in excruciating pain the next. I didn’t know this would be life with fibromyalgia and neuropathy. This isn’t going away.

I can’t wait for my palliative care appointment at Emory next month. I am very aware I need help. I don’t have coping skills to manage this kind of grief and pain.

Until next time,

Warrior Megsie