When Your Safe Space is Bulldozed

Have you ever been involved in a group or with a person you considered safe? They created a safe space for you to be authentically you. What happens when that safe bubble unexpectedly bursts?

That’s what happened to me recently. Without going into too much detail, once I know someone’s true stance on an issue that I find absolutely appalling, I can no longer share digital space with that person. Though it was brief, and the subject was quickly changed, I cannot unhear it. I had such a visceral reaction which let me know that I must protect my state of mind and permanently remove myself from that space.

As I’ve begun to explore, research, and learning to love my blackness, I must be even more careful of who I share space with. You know that saying, it only takes one bad egg to ruin the carton, rings true in this situation. Fortunately, I made some great friendships that have continued to develop outside of that space.

So, what do I do now? I lean on those who I know have the same values and opinions on hot button issues. I fill that time doing more to enrich and uplift my spirit and passions or just rest. My safe space is my Zen home and writing with my cat Nathan Edgar by my side.

Yesterday was the five-year anniversary of receiving the biopsy of my left breast. It hit a bit harder than usual because it truly was the last time of being just a regular patient. After that point, cancer will always be a permanent word in my medical history. Even though I have no evidence of disease (NED) at this time, I’ll never be just a regular patient.

While some cancer warriors don’t like to think about their cancerversaries, I do. My experience was utterly traumatic. I can’t get away from what I experienced and the permanent damage to my body.

I remember everything about getting the biopsy. The doctor who performed it looked like she was 12 years old and her name is Dr. Grey. Initially I laughed because I’ve been watching Grey’s Anatomy for years and told her I’m sure she’s sick of the jokes. The laughter broke the tension for a few minutes.

As I was lying there with the nurse on my right side holding my hand, I couldn’t take my eyes off Dr. Grey’s face. I watched her facial expressions and could see she found something, but my mind refused to think it would be cancer. I’m a great reader of facial expressions and body language, so I can see subtle changes that most wouldn’t notice.

To this day, I jump when I hear sounds of a stapler and especially hearing a staple gun. That’s what it sounded like with the tool Dr. Grey used to gather the tissue samples. It was so loud and echoed in the room. The nurse kept asking if I was in pain because I was squeezing her hand so tightly. No, I wasn’t in any pain, but the sounds were traumatizing me. I was counting each sample. She took more samples than she initially said she would.

I needed a safe space yesterday to talk things out and relieve some anxiety. I created one by calling a friend who never fails to crack me up and driving around just to feel like I had gotten away for a bit. I came back home feeling calmer with a half-smile on my face instead of a full-on frown.

I’ve mentioned before that ever since cancer, I’m incapable of tolerating bullshit. If someone bulldozes your safe space, know that you are strong enough to create another one for yourself.

Until next time,

Warrior Megsie

The Problem with Words

As I was seeing beautiful black and white pictures of women for the #challengeaccepted posts on Instagram, I decided to use it as an opportunity to post the ugly things I’ve been told over the years. I know it shocked some people because my picture was cute but the words below it were tough to see. I felt it was important to express how words can be so damaging to a person’s psyche.

I kept it short on Instagram but decided to expand on it to see how far I’ve come in my own healing and thinking. No one should be told these things. I don’t know why I had to be the person on the receiving end of such hate and ignorance. It’s unfair. It’s unjust. It’s painful. It’s a problem with words.

I’ve been called a nigger.
I’ve been called ugly.
I’ve been called fat by men.
I’ve been called stupid by a teacher.
I’ve been called stupid by an employer.

I’ve been told I will fail.
I’ve been told I don’t matter.
I’ve been told I don’t exist.
I’ve been told I don’t belong.
I’ve been told I’m a sellout.

I’ve been called too emotional.
I’ve been called weak.
I’ve been called an Oreo.
I’ve been called unfeeling.
I’ve been called a valley girl.

I’ve been told I act too white.
I’ve been told I dress too white.
I’ve been told I’m not loveable.
I’ve been told I speak so well.
I’ve been told I’m not black enough.

My psyche has been systematically torn to pieces for 20+ years by the ignorance and racism from whites and blacks that started in my hometown of Macon, GA and has followed me through the years as a young adult and in the professional world. I reread my journal this morning from senior year of high school in 1995 and still have a visceral reaction to my words.

The pain of not being accepted.

The pain of being bullied.

The pain of desperately wanting to leave the south.

I never felt I belonged anywhere until the college years, especially junior and senior years at The College of Saint Rose in Albany, NY. That’s why I hold onto my college memories so fiercely because I found a group of friends so eclectic, smart, clever, and so accepting that I felt safe to be authentically me at that time. I’m glad I have scrapbooks and multiple photo albums that captured the fun times and great opportunities from that magical time in my life.

I honestly thought once I became a working adult that my work ethic and merit would get me ahead. As more years went by, the more oppressed and defeated I became. I would be told I’m an “expert,” yet companies could never find the money to give me a proper raise. They would be shocked when I turned in my resignation and then have the nerve to ask, “Is there anything we can do to keep you from leaving?”

I had been carrying all that negativity from racism, oppression, and feelings of inferiority on my back for so many years that I lost complete faith in my abilities and talent. I used to think it was a cruel joke that I received multiple awards in high school and college. I was constantly told I would be going places because of my talent. It turned out none of it counted in the “real world.”

My cancer experience redefined me. It helped to rediscover my voice that had been silenced for so long that I thought it was lost forever. I’ll never consider cancer a gift, but it was an opportunity to rediscover the things that once brought me true joy. Yet, I was still playing it too safe. I wasn’t fully taking back what control I had left over my life. I was remaining comfortable in the uncomfortable; still too paralyzed to make any serious moves.

It took a pandemic to force me to pause and pivot not just my career but also my mindset. Rereading that journal from my 17-18-year-old self this morning reminded me how much I’ve carried the hurt from people’s words that ultimately turned me into a shell of my former myself.

I’ve had a resurgence of my passions and confidence while rekindling old friendships and cultivating new and profound friendships. My mindset changed once I fully began to believe in myself and know my worth thanks to a lot of help from my friends. I’m blessed to have so many people continue to lift me up even when I’ve doubted myself all these years.

So, here’s what I repeat to myself now that I’ve shed that cloak of negativity that was suffocating me.

I AM intelligent.
I AM talented.
I AM worthy.
I AM inspirational.
I AM feminine.

I AM a writer.
I AM a performer.
I AM a Nut-Meg.
I AM a talker.
I AM a powerhouse.

I AM loving.
I AM sensitive.
I AM giving.
I AM kind.
I AM enough.

My newfound armor continues to grow thicker each day, so insulting or hateful words or rude comments no longer sting. They smoothly roll off my back.

I am different and always will be. And you know what? That is OKAY.

Until next time,

Warrior Megsie

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

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.