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