You Never Forget The Cancer Call

I’ve been struggling with writing lately. It’s not because I have nothing to say or am uninspired. It’s because I have way too much to say and struggling to get my thoughts written down in a cohesive way. The perfectionist in me doesn’t want to write something awful, yet I need to release some of what has been on my mind lately.

My six-year anniversary of getting the cancer call was on Tuesday, September 14th. I woke up that morning with mixed emotions. It’s one of those memories that will never fade. The flashbacks are clear and packed with emotion. I was working at iHeart Media sitting in my cubicle on 9/14/15. I’d had the biopsy at 4pm on 9/11/15 which fell on Friday that year and was told it would take 48-72 hours to receive the results. I’m always aware of the time because of all my years working in media and making sure the commercials were the correct spot length. I remember looking at my phone when it rang at 3:05pm and not recognizing the number but knowing in my gut to answer.

“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.”

The entire trajectory of my life changed in an instant. Yes, I’m still alive and “survived,”, but many other warriors I’ve crossed paths with during these six years have died. Why am I still here and they aren’t? They had husbands or wives and children. I don’t. Survivor’s guilt is real. It’s important for people to not negate these feelings because the guilt is just as crushing as the loss of friends. 

I miss them.

I think of their families.

I wish I could’ve taken their place.

So yes, I’m still here but not physically or mentally the same. I’m chronically ill thanks to fibromyalgia, back pain, and neuropathy. I’m in pain every second of every damn day. Some days are manageable and other days it’s off the charts. I literally look like a different person (chemo curls are back) in a body I don’t recognize at all. 

Being naturally resilient is a blessing and a curse. Even when I don’t want to show up for myself I somehow always manage to push up and just do it. I’m fully immersed within the cancer space. There are days where I feel passionate about my advocacy and days where I am utterly drained. I have to continuously remind myself that it’s okay to put myself first and can say no to various requests of my time. That doesn’t mean I am selfish or don’t care. That is self-care.

For the first time in six years, I did not completely wallow on that day. You see, cancer cannot take away the essence of me, you or anyone. Ever. The one constant that brings me pure joy is the arts, specifically the theatre. So, I went to see a musical with another theatre friend that evening. It was the first time I had done something that literally breathed life into me. I fully enjoyed myself and felt the familiar feeling of walking into a theatre and feeling like I was home. It was an evening that cancer could not touch.

Until next time,

Warrior Megsie

A True White Ally

I received You Are Your Best Thing: An Anthology edited by Tarana Burke and Brené Brown and card from my lovely, supportive, and compassionate friend Shannon earlier this week. The Black authors who contributed to this anthology are extraordinary and so raw in sharing their experiences of being Black in this society. It has taken almost the entire week before I had the right headspace to begin reading it.

I feel an avalanche of emotions topple over me after reading the introduction and the first four stories. My head is spinning, tears drying, and heart is still pounding.

I must thank Shannon for sending this to me because it is not something I would’ve bought on my own. To be honest, seeing Brené Brown’s name on it made me hesitant to even open it at first. Once I read the introduction, I appreciated that Brené acknowledged that some Black people would feel this way and she and Tarana addressed the reason for this collaboration and both explained the dynamics of their friendship.

The fact is, Shannon reads my blog, my social media posts, and takes time to check on me and really talk to me about racism and how she’s worked toward acknowledging her own white privilege. She’s heard the brokenness in my voice, has seen the pain and exhaustion on my face, and continues to reassure me that she IS a safe white ally and genuine friend.

She knew I needed a different kind of support and keenly aware that she should not be that person for obvious reasons. I’ve expressed countless times through conversations and through my writing that I don’t have many Black friends and have always struggled with accepting my own Blackness and experiences. It’s what prompted the blog piece I wrote called Mixed Fragility last year. Much of my existence has been where I am the only Black person in the room, in the company, at the table or on the stage.

2020 was a pivotal year for me because it’s the first time I truly began to be afraid to drive alone, live alone, go into the store alone. I also felt a newfound sense of rage and brokenness that differs from all my previous feelings and entered a period of wanting to rise up and express the hurt and confusion I continuously feel for being in this skin.  

I’m about to make another cup of chai tea and read a few more chapters because this is the first time I can honestly fully relate to parts of these Black experiences shared. These Black authors are exceptional, and I can feel a tender pull of togetherness and understanding from their words. I used to think I was the only one who felt such rage, self-hate, and shame.

Through action and from a place of respect, Shannon let me know that she stands firmly by my side as not only a white ally and anti-racist, but also as a genuine friend.

Until next time,

Warrior Megsie

Afraid of Experiencing Joy

Am I afraid of experiencing joy? Yesterday, I was listening to the podcast Small Doses by the exceptionally brilliant and talented comedian, actress, author, and businesswoman Amanda Seales. Her guest on this particular episode was Layla F. Saad, the author of Me and White Supremacy. When Layla was talking about her experiences as a black Muslim woman raised in the UK, she struck a painful chord in me when discussing the fear of joy. It’s something I have thought about over the years but never fully acknowledged within myself.

After cancer, the expectation by friends, family, coworkers, and even some other cancer survivors are to feel joy and happiness that you “made it” to the survivorship stage. I don’t feel joyful about being in this stage because I’m in more physical pain than I was during active treatment. I’ve tried so many medications to try and help manage the fibromyalgia, neuropathy and back pain, but none have brought any real relief.

How do I embrace joy when just breathing can cause ripples of pain throughout my entire body?

How do I embrace joy when getting out of bed causes me to cry out in pain and hold onto my cane for support?

How do I embrace joy when I don’t have a family of my own to live for?

As I struggle to navigate my way through the thick clouds of despair, frustration, anger, resentment, and pure rage, I do have fleeting moments where I’ve experienced joy. That’s the issue. The longest period where I experienced pure, full on joy was during my recent adventure in Zadar, Croatia where I met the amazing Ancora.ai team for a bit of business and tons of fun and team bonding. I experienced so many levels of joy that I was almost in shock by how light and happy I felt. Is this what life is supposed to be like?

When I look at pictures from that trip, I almost didn’t recognize my face because it was literally glowing from the joy I was feeling. There were no filters or spotlight used. I had not realized how weighed down I had become from dealing with

battling racism my entire life

oppression and microaggressions my entire professional career

feeling like I don’t belong anywhere

fighting to have my symptoms taken seriously by doctors

the reality that racism seeps deep within healthcare and certain Facebook cancer groups

not being able to fully be myself and be accepted

and

not knowing how to be joyful long-term.

Yes, I was scared to travel to Croatia by myself but also knew I had to do it. I needed to get away from the United States and see if I’d feel the same oppressive weight over there that I do here. I wasn’t followed in any stores. I wasn’t looked at suspiciously. In fact, some of the local people didn’t automatically know that I was an American. The waiters I met were welcoming and hilarious. I never felt pressured to hurry or make a rash decision. The entire Ancora.ai team were so lovely, compassionate, hilarious, caring, and brilliant. I didn’t have to compartmentalize any racist comments or feelings of being undermined in order to make it through the day. I could just be full on Megs/Megsie/Meggie/Megan-Claire without judgment. My laughter and sheer joy were real and not faked. I didn’t have to wear a mask. Is this what joy feels like on a consistent basis?

Unfortunately, as soon as I landed back in Atlanta, GA, I felt the weight of oppression, microaggressions, fear of police, and felt suspicious eyes on me. So, once again, my joy was fleeting. In fact, the joy in Croatia seemed almost too good to be true.

Maybe that’s why I’m afraid to experience joy long-term because I’ve never known life without having to deal with hurt, pain, despair, fear, frustration, stress, and rage. Yet, I have the right to experience joy more than once every blue moon.

I need joy.

I crave joy.

I deserve joy.

Damn it; I’m going to find some joy!!!

Until next time,

Warrior Megsie

How Much of Me Can I Reveal?

My birthday is next Saturday, July 3rd. I’m hitting another pivotal age that will move me into a new age category when filling out registrations, applications, or patient paperwork – 45. Aside from noticing how much my face and body has aged the past five years post-cancer, I’ve noticed the mandatory toleration of bullshit and then racist bullshit barometer that has been forced upon me since the first time I was called a nigger in the 4th grade in order to survive is gone.

Will there ever a time where I can bring all of myself into a room? How much of me can I reveal without getting hurt? How do so many white people not see the protective cloak I wear to help fend off the inevitable insults, microaggressions, full on racists remarks, undermining of me, and them trying to “put me in my place?”

I remember turning 25 while living in LA. By that point, I had become

A little jaded.

More insecure.

Had experienced first heartbreak.

Unhappy with career.

Self-hate.

Diagnosed with depression and anxiety.

I couldn’t financially pursue acting the way I wanted because many unexpected and painful things happened while in LA that forced me to go the corporate route because I needed health insurance and somewhat steady income. I put my dreams on hold.

I remember turning 35 while living in Atlanta. By that point, I had experienced

Living through a terrible recession.

More heartbreak.

Lack of professional direction.

Being called stupid by my white female boss when I worked for an in-house agency.

Being told I’m brilliant by a white employer but unwilling to pay more for my expertise.

Letting go of pursuing acting.

More health issues and unexpected weight gain.

My hair on the left side started falling out.

More depression and anxiety.

Self-hate.

My white doctors dismissing my symptoms even though I knew something was seriously wrong.

More anger that was boiling into rage.

Now we fast forward to soon-to-be 45 while living in Atlanta. Now, I continue to have difficulty navigating through life because of

Supposedly “surviving” Stage IIA invasive lobular breast cancer.

Lack of quality of life thanks to permanent damage stemming from 16 rounds of chemo, 8 surgeries, and 33 radiation treatments.

Unmanaged chronic pain due to fibromyalgia and chemo induced peripheral neuropathy and medically induced menopause.

Being told by two white women when I was working at a huge ad agency that I had to keep my health and work separate when I began struggling from side effects from taking Arimidex to help prevent a recurrence. They said this in front of everyone.

Being called by the other black woman’s name 2x by an older white woman, who was/is a tRump supporter, after being there for two years at the job I had before the pandemic. There were only two black women in the marketing department. We have vastly different looks and personalities.

Having my ideas stolen by white women in the workplace throughout my entire career and them receiving the credit and not being able to call them out on it for fear of losing my job because I needed the money.

Realizing how oppressed and degraded I had become after consistently dealing with the white fragility of white women and every so often white men.

Dealing with white women in certain cancer groups who have actually said, “race doesn’t belong in the cancer space” and “not everything is about race.”

Being trolled and targeted on Twitter by racists because I began speaking up about it more and more.

Palpable cracks in my soul after seeing black men and women being murdered at the hands of white people over and over and over and over again with no accountability.

Discovering white people who I thought were friends and who I trusted let their racial bias and racists thoughts show, which has destroyed my trust in a lot of white people.

Watching an insurrection happen LIVE and seeing those racists being treated with dignity and able to just go home afterward.

Palpable pain, self-hate, unhappiness, and rage continues to runneth over.

I honestly didn’t want to write out the flood of thoughts that have been whirling in my head since the start of this year. Writing it down makes it real. I literally have tears in my eyes as I write this, and heart is pounding furiously because I am just so fucking tired of having to be ON all the time and never knowing who I can trust anymore. Now that the veil of oppression has been lifted from my face, how do I continue moving forward without hate seeping into all the cracks in my soul that have formed during my soon-to-be 45 years on this hateful planet?

Will I ever develop the ability to move past…

the darkness

the sadness

the hurt

and the rage.

Well, that remains to be determined.

What I can confidently say is I’m finally at a place professionally where my voice and ideas are encouraged, supported, and uplifted. I’ve never received that kind of respect before, and it feels strange yet deeply appreciated and comforting. I suppose miniscule steps forward are still steps to be acknowledged.

Until next time,

Warrior Megsie

Aging Out on National Cancer Survivors Day

Here it is National Survivors Day and all I can think about is how I’m aging out.

I’m aging out of the AYA community.

I’m aging out of the dating game.

I’m aging out of this post-cancer body.

I’ve been in medically induced menopause since 2017. Going through breast cancer definitely aged my body but being medically induced into menopause shoved me all way into serious aging both internally and externally. The only part of my body that has never changed is the shape of my eyes. Everything else is no longer even close to what I used to know.

(Left to right)
Me 5 years ago on day of breast cancer surgeries; day after breast cancer surgeries; Me last week!

I posted a video on my Instagram earlier this week about my menopausal hair. I finally threw in the towel and got it severely chopped off after a year of trying to grow it out. I truly thought once the chia pet tight curls fell away, that I would look like myself again. Instead, my hair began to look stringy and thin. It literally stopped growing on the right side and in the back. I was beginning to look lopsided because the left side of my hair was going back beautifully. Getting this radical cut was an uncomfortable decision for me but needed to be done.

Me this week having too much fun with the app Easysnap!

There’s an illusion that we’re in control of our bodies. When going through cancer and having a chronic illness, it is plain to see I have little control over anything, especially my body. I had gotten back into exercising but suddenly stopped due to fibromyalgia pain in my back. It was so bad that I couldn’t sleep or move without wanting to cry. Now I’m back to trying to get motivated to workout. The belly fat is my nemesis. I don’t even want to take any full-length pictures because of my whale shaped body.

So, I’m aging out of many categories that used to feel somewhat natural and supportive. Instead of being one of the “young” ones in a group, I am often the oldest person in the group. Making friends as an adult is hard. Making friends as a single adult past a certain age feels impossible. I’ll be checking a new age box on my birthday which is July 3rd. This thought has thrown me into a complete panic and despair. The bulk of the people I know are married or living with someone and have kids. The few single people I do know already have a strong friend group. The wish to hang out with friends on a consistent basis is over. No one has time anymore.

Aside from having zero sex drive, I’ve become way to set in my ways to make room for a relationship. Heck, I had hard enough time when I had the hot body to find someone who didn’t look at me like an alien because I’m difficult to classify and don’t fit any typical categories. I continue to straddle between the black and white world without fully fitting into either.

I am five years no evidence of disease (NED). It just hit me this is the longest relationship I’ve ever been in. Will NED be with me forever? Do I want to live with NED with such a low quality of life? While my brain is sharper than it was five years ago, my body has yet to catch up. How much of this aging is natural? I think zero because I feel like a 544-year-old on a daily basis. I just don’t necessarily show it in selfies or on zooms because of acting. I win daily Oscars, Emmy, Golden Globe, and Tony awards.

Can anyone even tell when I’m faking and when I’m being real?

Until next time,

Warrior Megsie

Lemon Martini With A Twist Of Letting Go

I’ve always detested the saying, “turn lemons into lemonade.” I don’t like lemonade. A friend from the high school days came up with turning lemons into a lemon martini because that fits me better. I wholeheartedly agree.

I know it has been a few months since I last posted something original. Some good things have happened during this hiatus. Heck, I’ll even say some great things have happened! Unfortunately, some truly sad and upsetting things have happened too.

Is it possible to get through a month without trauma, sadness, rage, disappointment and frustration? I’m continuously thrown into the depths of despair because I expect too much of people and get hurt when they don’t show up the way I thought they would. The more I talk openly about race, the more I see the true colors of so-called friends who I never dreamed would have a racist bone in their body. I have officially lost the ability to trust and be vulnerable with people. When I say people, I am referring to white people because I only have four black true friends.

Of course, I know not every white friend will let me down, but I can literally feel my cloak of armor wrapping me tighter to fend off the possibility of hurtful words. To this day, I am most surprised by the racism within the cancer community. I naively thought the cancer space would be free from that kind of bullshit but sadly it’s not.

The more I keep trying to be my authentic self, the more alone and isolated I feel. I often feel like the only single person on this planet.

I no longer feel like a warrior.

I no longer feel strong.

I no longer feel hopeful.

This world continues to be so cruel and oppressive. I’m desperately trying to let go of past and current hurts and let offensive and racist words roll off my protective cloak. The harsh truth is there will never be relief while in this skin because racism will never end. It seeps into everything.

Until next time,

Megsie

The Problem with Words

I decided to repost this piece that was originally published last year in August. I’ve been struggling as I continue to watch the Chauvin murder trial. It reminded me again about the problem with words as the defense attorney of that murderer tried to assassinate the character of George Floyd. Is there no bottom with people like that?

I think about the way I’ve been talked down to by nurses and doctors. How invalidating and condescending they can be until I open my mouth and set them straight. Why is everything dictated by the color of my skin? Why can’t I just been seen as a quirky human and talked to with respect?

Once again, my creative mind isn’t functioning well at this moment. My professional life is on FIRE in an amazing way. I have taken on the role as Partnership Director with GRYT Health and asked to be a contributing blogger for WebMD starting next month. I should be over the moon, right? Right?

Unfortunately, my personal life of existing in this body and in this skin color leaves me utterly depleted and unable to turn to the creative outlets that have brought comfort in the past. So, I might repost some of my previously written blogs over the next few weeks because I’m still going through some things. Plus, most of what I’ve previously written is what I am struggling with now. While I can still let racist and insulting words roll off my back, I am still human and still affected. After all, it’s okay to NOT be okay.

Original Post August 2, 2020

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

A Cancer Story: The 5-Year Mark

It was five years ago today that I had my breast cancer surgeries at Northside Hospital Women’s Center in Atlanta, GA. I have officially reached the five-year mark, which is apparently a big milestone. I’m flooded with memories on the days leading up to my surgery day.

I had a blood transfusion two weeks before to help boost my system for the surgeries. To this day, I am pleased as punch to know my blood type is B+ and not O. I thought it was hilarious and would yell out “I’m B+” in my cheerleader voice. In fact, I still do it. Maybe it was watching too much True Blood on repeat, but I felt special knowing my blood type wasn’t the common O. Of course, I nearly vomited when I got the blood transfusion – two bags of blood. Those suckers were huge! I had one bag of O and another bag of B+. It’s a strange and thick feeling having someone else’s blood infused into you. I had many thoughts whirling in my mind.

What somewhat brought me down from feeling like an actress on Grey’s Anatomy was thinking about whose blood I was getting? I hate to say that my first thought and fear was what if the donor was a racist? Then I paused again and thought what if the donor was a serial killer? After six hours of having two bags of blood slowly infused, I was shocked when I saw my reflection. Had I become Bella from Twilight? My face, neck, and chest were flushed red. What freaked me out for a minute was seeing my eyes red. I kept looking for Edward on my way home. My humor has always remained intact.

Now it was surgery day. It was outpatient with no overnight stay. I was only a little nervous because I had complete faith in my breast cancer surgeon and plastic surgeon. They worked exceptionally well together. I can honestly say I still have a total girl crush on them. My breast cancer surgeon has major personality and humor, plus brilliance! She really helped me push through the last three chemo treatments when I was ready to give up. My plastic surgeon is the gentlest doctor I’ve ever dealt with and has magic hands. I never felt uncomfortable with him. As he came in to draw on the areas on my chest, his voice was so calm and gentle. He talked me through everything he was doing and made sure I did not look in the mirror. Smart move.

As I was being prepped for the surgeries, I had another laugh because the nurse put this silver aluminum foil looking blanket and cap on me. I looked like a bloated baked potato!

The only thing I remember before the anesthesia knocked me out was asking if I could keep my favorite chemo hat on underneath the baked potato cap.

Lumpectomy of left breast

Sentinel lymph node dissection

Reduction of both breasts

Reconstruction of both breasts

I wish I could say I woke up feeling just groggy. Nope! I woke up in excruciating pain and terribly nauseous. Then, one of the tubes I was hooked up with came loose because I felt something wet on my back. When I turned…the sheets were covered in blood. I got hysterical and started screaming. It took three nurses to calm me the fuck down. So, I was moved to a different bed and the pain went to a high that I pray I will never experience again. After two hours, the nurses were still having trouble getting the pain managed. They almost had me admitted into the hospital, but I managed to talk myself down from the ledge. I just wanted my own bed and my cat Nathan Edgar (Baby Natey).

This cancerversary brings mixed feelings that I will get into another time. I will say it felt good to write again since I have been on a hiatus for a few months. I definitely feel a much needed therapeutic release.

Until next time,

Warrior Megsie

Taking a Hiatus

Hello darlings. So much has happened in the first few weeks of 2021 that I can’t even write sufficiently about it. I feel so out of control, anxious, depressed, angry, and horrified by the insurrection at the Capitol on January 6th. Seeing those white racists and traitors being treated with dignity by the police, taking selfies with the police, and allowed to leave caused me to lose my freaking mind. I became so enraged by the blatant hypocrisy that I lost my ability to speak for a few days.

Then I fell really hard on January 10th thanks to the severe and permanent neuropathy in my feet. I was walking with my awesome realtor Parker and BAM…went down hard. The crazy thing is I got right back up like nothing happened and even walked up stairs, and then ran two errands before I finally felt some pain in my right ankle. By that evening, I could not walk and was hysterically crying. I used my desk chair with wheels as a makeshift wheelchair to get around my apartment. My sweet cat Baby Natey kept trying to comfort me. Being single with an injury and not being able to walk upset me to no end.

Fortunately, I was able to get a 9am appointment with an orthopedic ankle specialist on January 11th. The issue then became how was I going to even get myself up the five steps that lead to the parking lot and to my car? My adrenaline and anger were pumping so hard that I used one of my canes and just forced myself up those blasted stairs, into my car, and to Emory St. Joseph’s for the appointment. The valet was not allowed to get me a wheelchair. The guy said I would have to up to the front desk and sign one out.

WTF.

I said forget it, and once again without help, I made it into the elevator and into the doctor’s office. The woman who took my temperature immediately saw the pain, tears, and frustration on my face and helped me hobble into the waiting area. She then went to the front desk, signed me in, and told them I need help. I started crying again because I finally was not alone and had some help.

My male nurse, who is so good looking even behind the mask, and my new ankle doctor took great care of me. I had tweeted how surprised I was to be treated with kindness and not talked down to by this white doctor and white male nurse. I am so used to not being heard and talked down to that once again I was crying because my pain was actually taken seriously.

Diagnosis: A Grade 3 sprain in my right ankle. I did not immediately feel pain when I initially fell because of the neuropathy. It masked the pain for a few hours. I felt so validated by the doctor because he agreed as well. Now I am in an air cast boot that goes all the way up to the knee for two weeks. I will go back on the 25th to be reevaluated and see if I need another week in it or will start physical therapy. At this point, I have no idea how much PT I will need, but assume 6-8 weeks to start. What I do know is I take a really long time to heal post-cancer.

My gosh! I freak out each time I look at a Grade 3 sprain.
Air cast boot and this lift thing for my left foot to help lift up that side so walking won’t be as awkward.

My body already deals with chronic pain from neuropathy, fibromyalgia, herniated disc in my lower left side of back, and now a severely sprained ankle. It is too much to process when all are flaring up. I know my Baby Natey would make dinner and bring me tea if he could. Instead, I just do what I do and take care of myself but more bitterness these days.

I’ve had to suspend my house hunting because PT will eat up a lot of my time. My lease is up in mid-March, so no way I can even look for a new place, pack or move. I just have to hope there won’t be any more explosions or fires in this complex. And yes, you read that right. There was an explosion in one of the buildings up the hill from mine right before Christmas. It was horrible, the air was thick with smoke, and no one could get in or out of the complex, and power was out for hours and hours on a really cold night.

So, I am going to take a hiatus from blogging until I get this blasted ankle back up to speed. It’s too much to deal with four separate and intense pains. I can handle three but not four at one time. I cannot think or process anything and plagued by fatigue. This air cast boot is heavy. Right now, I have named it asshole until I be friends with it. I can’t be creative when in this much pain.

Until then, I hope you will look at previous posts and check out the articles on my ‘About’ page.

Tootles,

Warrior Megsie

Embrace the Suck

I wanted to read the words below out loud so you can feel the full emotions in my words.

I think many can agree 2020 has been like an episode of The Twilight Zone played on a loop. It was like the lid on Pandora’s box was forced opened and nothing could stop the chain of events. The pure hatred, corruption, greed, rage, white privilege, and selfishness of people boiled over.

There were days where I could embrace the suck through challenging myself professionally and spiritually. I was able to rise up for myself with a new confidence. I felt bolder, inspired, empowered, and even thankful because I took the professional risks I had been wanting to take for years and years. Instead of shying away from risks, I finally had the ability to get off that hamster wheel and believe in my talents. How I wish I had had this forced pause and push back in my 20’s but better late than never, right?

I have also never felt more afraid, paranoid, heartbroken, horrified, and filled with a level 4 kind of rage than I have this year. I witnessed two of those “Karens” during the summer. I had more racist remarks directed toward me. The horrific images of Ahmaud Arbery and George Floyd being murdered by white men who smiled will haunt me forever. Police uniforms and red hats became the modern Ku Klux Klan attire. There was no need for them to cover their faces anymore. That racist tRump and the GOP gave a green light because they knew there would not be any consequences.

My soul cracked.

Instead of solely focusing my blog about cancer, I felt I had to start writing about racism and the difficulties I continue to face both inside and outside of cancerland. I stopped being nervous about possibly offending people. Blogging my point of view and experiences of the past and present was a way to keep from going insane.

I really wanted the white people I knew and those I did not know to see my face and that I am not immune to have racist comments spewed at me. This year truly let me know that it does not matter how educated, talented, and classy I am. At the end of the day, I will always, always be seen as a black woman first.

When I wrote the blog post “Mixed Fragility,” it was the first time I had truly uncomfortable conversations with myself about race, how I am perceived, and how I perceive others. I technically have two black female friends and one black male friend. They can relate to a lot of what I feel on a daily basis. It was the first time I have had that.

How does one ever heal from severe trauma when it is their existence causing all the pain and turmoil? Even though I am still not accepted in the black world – no invitations to the barbeque – something changed for me when thinking about all the white people I know. I began to pull away from the white friends in my inner circle. In fact, I would say I am still pulling away.

What I say next is not to anyone specifically. It would be rude to call out people by name. It is what I experienced heavily this year, so I’m speaking to the general white population.  

So here I go…

I get so sick of white people saying not everything is about race.

I get so sick of white people questioning me and not believing me when I share a racist experience.

I get so sick of white doctors dismissing my pain and talking down to me.

I get so sick of white people being unable to control their surprised facial expressions when they hear my voice.

I get so sick of white people feeling the need to tell me about black people and black organizations within the cancer community.

I get so sick of white people feeling the need to start any conversation about race by saying they will never know what it is like to be black and how that feels.

I get so sick of white people not believing there is racism within the medical community.

I cannot even be viewed as just a cancer survivor because groups and organizations make it noticeably clear they label me as a BLACK cancer survivor; therefore, I must be an expert on all black-related issues. I thought the days of being used as a black token were gone. It has never been more apparent how many white people view me.

As I write this, I can almost hear the thoughts of any white person reading this. I know you are thinking “what am I supposed to say” and “I’m not a racist” and “I don’t view you as black” and “I don’t see color” and “why are so many black people angry.”

While I am excelling professionally, I am a wreck personally. I no longer know who to trust. Some of the places and people I thought were safe showed their true colors. No one, including me, knows how to categorize me. I do not fit in any common mold. I am unapologetically ME.

So, while I had some amazing and one of kind opportunities come my way this year, I continue to grapple with depression, pain, loneliness, rage, hurt, and confusion. This James Baldwin quote is one I have used repeatedly this year. It is the first time I feel what he felt. I wonder if 2021 will be any different.

It is important for me to thank all of you for taking the time to read my blog this year. While the bulk of my posts took courage to write and share, I acknowledge it took courage for you to read it. I read every single comment, negative and positive, that I received. Life can shove many of us off the rails with unforeseen challenges, unexpected deaths of friends and family, and hard truths revealed. What I do know is I will continue to be bold, work through the uncomfortable thoughts and feelings, and keep sharing my truth.

Thank you for coming on board the cancer train of vulnerability and mixed emotions.

Merry Christmas from Megsie and Baby Nathan Edgar

Until next year,

Warrior Megsie

Rage Runneth Over

I have really neglected my blog which upsets me because it is one of my major coping mechanisms to keep pushing forward in this insane world. Writing is a way to gauge my mental health. That aside from a busy work schedule due to my fulltime job, multiple freelance jobs, and volunteering for multiple events last month, I did not make the time to write out my thoughts.

I am sure I am not the only one who sometimes packs their schedules so much that it leaves no time for self-care. I know I intentionally did not make the time to write.

I did not want to feel.

I did not want to think.

I did not to acknowledge anything.

Today is the first time in a while where I am not obligated to attend a Zoom or run errands. I honestly do not want to write out the flood of thoughts that have been whirling in my head for the past few months. Writing it down will make it real.

The darkness.

The sadness.

The hurt.

The rage.

I am currently taking a six-week journaling class through a young adult cancer group to help process and release some of these thoughts and feelings. In this class, we are given a prompt and journal whatever feelings arise, then write feedback to what we wrote, and then share with the class. I took it last year and loved it. However, this year is different. Though I’ve had many truly amazing and exciting things happen this year (see my About page),the stress of living in a divided country where I’ve had racist encounters and racists comments directed toward me in places I thought were safe has thrown me into the sunken place – if you watched the Jordan Peel movie Get Out, you’ll understand that reference.

So, I wrote just a snippet about the rage that is boiling over within me and read it out loud to the class. There was the uncomfortable silence one gets when talking about race to a sea of white faces. The journaling therapist asked for everyone to hold some space for me and give words of support. Though I get what she was trying to do, it only made me more upset because no one was being authentic, except for the one guy in there who I talk to on a regular basis.

To this day, I remember posting my blog piece from last year called Cancer and Race in one of the lobular breast cancer groups. A white woman responded, “Race has no place in the cancer space.” I have never forgotten how her ignorant comment gut punched me. Then I think about talking with other people in other cancer organizations and one of the first things typically said is, “We work with black organizations that we can connect you with.” Why does my color make you so nervous and uncomfortable?

I am never seen as just a writer, speaker, cancer survivor, chronic illness haver, or patient advocate. Add the word Black in front of each one and that is how people see me first. Always.

If I want to be part of Black only groups or organizations, I know where to go. It is beyond insulting when a white person tries to segregate me, especially within the cancer space. Stop trying push square MEG into a round hole. It cannot be done. Ever.

Why can’t anyone see ME?

Until next time,

Warrior Megsie

Time Is Up PINKtober

#Repost from 9/29/19 – I still feel the same way about it, so reposting what I wrote about Breast Cancer Awareness last year with a few more rants…I mean additions.

I grow angrier and angrier each year during PINKtober. Why? We’ll be flooded with commercials and email campaigns of women wearing pink 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 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. About 10% of all invasive breast cancers are invasive lobular carcinomas. It is still considered rare because 80% are invasive ductal carcinomas. 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 Cancermeans 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 for my birthday last year 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 don’t know how much longer I can keep pushing through the chronic pain.

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 only 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 develop a herniated disc and slight tear near the nerve in my lower back which causes excruciating back pain on my left side.

Oh, and let’s not forget the Neural Foraminal Stenosis in that same area. Fabulous. According to the Atlantic Spine Center, it refers to the narrowing of the intervertebral foramen, a small hole through which nerves exit our spinal canal and travel through our body. Neural is defined as having to do with nerve cells or relating to a nerve and is often added to the condition’s name.

I have the back of a dang mummy. See my latest video talking about it where I get quite salty about my latest visit to the neurologist. Salty Instagram Video

I didn’t expect to have these continuous cognitive issues (chemo brain). Though I will say in 2020, it has vastly improved but still there. It only took 4 1/2 years but who’s counting?!

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

For me, PINKtober isn’t reality. It’s made to be cute, sexy, 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 active and post treatment? I often say it wasn’t the cancer that almost killed me, it was the harsh treatments.

We need more funding for research for lobular and metastatic cancer.

Until next time,

Warrior Megsie

The Pink Age

Breast cancer is glamourized to look pretty, easy and fun. The commercials also show older women smiling with makeup on. No wonder other cancers hate us. I was diagnosed under 40 years old with stage IIA invasive lobular breast cancer five years ago. How come no one tells us how cancer drastically 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 my face and neck would age.

Yes, I have always been on the vain side. When I was growing up, I performed in community theatre and ballet which meant always looking in the mirror. 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 four years ago. 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. That’s why I get so upset with another patients say radiation is a breeze. My flesh burned off on my under arm near the area of where my tumor once was. Yep, you read that right. It literally burned off. I felt like burned bacon. I know what it feels like to be a burn patient. The pain was excruciating.

These pictures below still make me cringe. By the end of my 33 treatments, the layered lines had formed completely down my neck. Instantly looking 20 years older in that area. As I look at this area now, it’s always irritated and itchy. It feels rough to the touch and scaly. Thanks to COVID-19, I haven’t been able to see my dermatologist. Why is it continuously itchy? I don’t use perfume or any lovely smelling lotions on it. It’s a big eye sore when I wear any type of shirt because there is no way to hide it unless I wear a scarf. I feel extremely self-conscious about it.

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. I only need half a pound these days. As you can see below in the pictures from four years ago, nothing could fully cover them up back then. Aside from looking fatigued, I looked haunted.

Me then and me now on a really good hair and makeup day

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.

It has been four years since the radiation days, and I don’t know my skin post-cancer. It’s dry and scaly in some areas now. The skin underneath my eyes took one of the biggest beatings due to constant rubbing and contact dermatitis. I was constantly trying different creams trying to find the right one to truly hydrate my skin.

I finally got to the bottom of the contact dermatitis that was so painful last summer. After an allergy test at the dermatologist, I’m allergic to the dye in antibacterial soap. Every single time I was washing my hands and using the orange colored antibacterial at home and at the cancer center and using orange or green colored hand sanitizer, I would touch my eyes to wash my face with clean hands not knowing my fingertips were causing the irritation. Now everything is clear including hand sanitizer.

Don’t even get me started on my lips! They used to be smooth. 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 but it’s not a permanent fix. I never know what will cause another skin flareup. It’s a good thing I am chronically single and a hair away from being thrown into a convent because these lips would only be kissable for an alligator.

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. Once the makeup comes off, I look a little gray, burned, wrinkly, and forever fatigued. A constant reminder 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.

Until next time,

Warrior Megsie

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

The Problem with Words

I decided to repost this piece that was originally published last year in August. I’ve been struggling as I continue to watch the Chauvin murder trial. It reminded me again about the problem with words as the defense attorney of that murderer tried to assassinate the character of George Floyd. Is there no bottom with people like that?

I think about the way I’ve been talked down to by nurses and doctors. How invalidating and condescending they can be until I open my mouth and set them straight. Why is everything dictated by the color of my skin? Why can’t I just been seen as a quirky human and talked to with respect?

Once again, my creative mind isn’t functioning well at this moment. My professional life is on FIRE in an amazing way. I have taken on the role as Partnership Director with GRYT Health and asked to be a contributing blogger for WebMD starting next month. I should be over the moon, right? Right?

Unfortunately, my personal life of existing in this body and in this skin color leaves me utterly depleted and unable to turn to the creative outlets that have brought comfort in the past. So, I might repost some of my previously written blogs over the next few weeks because I’m still going through some things. Plus, most of what I’ve previously written is what I am struggling with now. After all, it’s okay to NOT be okay.

Original Post

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

And I Rise Up

I was in serious danger of losing myself. I haven’t been true to myself in years, especially once I began working after college. I was literally shrinking myself to fit in these impossibly confined spaces that were never meant to hold a force like me.

I did what I was told.

I followed the rules.

I didn’t take any risks.

Anyone who knows me whether in person or online knows that I am definitely a tad extra, expressive, creative, and dramatic. My dream since I was a little girl was to be an actress. I’ve always felt at home on the stage. So, when I didn’t follow my heart and try to make it as an actress, the disappointment in myself eventually suffocated me.

Each time I walked through the office door of my corporate jobs over the years, tiny parts of me died until it became larger chunks, and then ultimately my entire spirit died. I had a huge collection of various musicals on cd. I had thrown all of them away except my three all-time favorites – Rent, Jekyll and Hyde, and Chicago. I thought my days to be creative and fuel my soul doing things that mattered to me permanently were gone.

Why did it take a pandemic to force me out of the coffin and restore life back into me? I thought going through breast cancer and all the ongoing complications from it would’ve pushed me to follow my dreams, but no. The fear of being without decent health insurance sucked the life out of me.

This forced pause by the world and not by my body is what breathed life into me again. I’ve been networking in a way I didn’t have the confidence to do prior to COVID-19. I no longer wanted to put myself in job situations where I would be utterly miserable but feel forced to accept it for a paycheck and insurance.  

When would I finally rise up and be who I was meant to be?

That time has come. I didn’t realize the transformation from death to life had been taking place until this week. Others have believed me for years, but I didn’t believe in myself enough to do anything about it until now. Once I began asking others for help and suggestions, I couldn’t believe the sheer number of people who have been willing to take the time from their schedules to chat and brainstorm ideas with me.

Since this transformation, the following things have happened with more in the works:

I was in the NY Times.

I was in People magazine.

I landed my first part-time freelance job with a clinical trial company in Europe.

I landed my first paid speaking engagement for an upcoming panel about the lack of diversity in clinical trials.

I auditioned for my first ever voiceover job and got it.

I’m finally taking some risks in order to pursue what fuels my many passions and feel deeply empowered. It’s hard to describe the feeling. My smile has been exhausted but genuine in the past few weeks. I see a glow in my face. It’s like the light has been turned back on.

It was once so hard to breathe, but I now rise up in a way I never have before with new purpose, vision, determination, and belief in myself. I give myself permission to accept that it’s okay to not be okay sometimes but to continue to rise up. I’m finally being true to who I am. 

I

AM

ENOUGH.

These are the two songs and quotes that inspired today’s blog piece

Rise Up by Andra Day and  Who You Are by Jessie J

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

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.