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