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

Times of Disruption

It has been an extraordinary time filled with opportunities I never dared to dream of. My confidence level continues to rise. I’ve lived more in that past few months than I’ve lived since moving back to Georgia from Los Angeles 17 years ago.

Even with these fabulous professional and advocacy wins, including a new full-time job that I’ll begin August 17th and multiple freelance gigs, there are still feelings of uncertainty. It’s not uncertainty about my abilities as a marketing and writing professional, it is an uncertainty of my body.

Chronic pain is not something I would ever wish on someone. It’s why my cancer journey takes so many gut-punching twists and turns over rocky terrain. I’m in the body of a mummy from the neck down.

There is never a moment where I am not in pain.

There is never a moment where I forget I’m in pain.

There is never a moment where I don’t curse this pain.

As much as I stress about a possible recurrence or metastatic cancer, I stress just as equally about how long I can keep pushing with pain levels that range from 6-20. I remember a telling moment at my 8th and final surgery related to my original breast cancer surgery that I had June 3, 2019 at Northside Cancer Center. While the nurse was prepping me with an IV, she asked what my pain level was at that moment. I told her it was an 8, and she just looked stunned. I was matter of fact and told her about my pain range and that an 8 was tolerable. She just started tearing up and said, “I’m so sorry you’re suffering so much.” It was honestly the first time any emotion had ever been shown by medical staff and I found it oddly comforting. For once, it wasn’t dismissed or even questioned.

My chronic pain is multi-faceted. I wish it were only from fibromyalgia. When you add severe neuropathy in my hands and feet, my senses become overloaded. Then add a herniated disc with a tear near the nerve where I desperately need another epidural steroid injection because the first one didn’t take, then I almost can’t think because the pain is beyond horrific.

It’s a disrupter of time.

It’s a disrupter of sleep.

It’s a disrupter of peace.

So, when others think my cancer story should be over, I simply say no. It never will be because I am reminded at every moment of every day what my cancer treatments and multiple surgeries did to my body. My body is gone. I don’t know this current body. We will always be strangers and never friends because it hurts me on too many levels. Others might be able to move past it, but I cannot. 

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

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