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.

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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.

It’s a troubling world

This world is troubling on so many levels. I can typically handle one thing at a time but not a total shitstorm within two days. I will go ahead and warn this piece will talk about race in relation to cancer.

Believe it or not, race plays a part in the cancer experience. I’ve dealt with many nurses, staff at cancer support communities and fellow warriors in online support groups who automatically assume since I’m black that I must have triple negative breast cancer. They have sometimes talked down to me.

No, this is not my imagination. This is not me being overly sensitive.

I blogged about this particular incident when I first started my blog in November 2017. It’s worth repeating. Some will innately get the insult and frustration. Others will not see why it was a big deal. All I can do is speak my truth.

It was almost a month after I started chemo in October 2015. I decided I needed help processing what was happening. I’ve always been a big supporter of therapy and support groups. I’m a talker and like to talk things out. At that time, I didn’t know any other 39-year old’s going through this. I needed support.

I went to the Cancer Support Community in Atlanta, GA. In order to join a group, there is an intake session with one of the staff members. I had spoken with her on the phone and was really looking forward to meeting her. I was already fatigued, nauseous and had worked a full day by the time I arrived. I was expecting to feel relaxed and heard.

The woman, who was white, gave me paperwork to fill out. Once done, I handed it to her, and she reviewed. This is where my frustration begins.

She asked, “Are you sure you’re not triple negative?” I was puzzled by the question. I knew what my diagnosis was, and it was stage IIA invasive lobular breast cancer. Maybe she couldn’t read my writing, even though my writing is very neat and specific.

She asked again, “I just want to double check. Are you sure you’re not triple negative?”

This time I was annoyed and responded back sharply, “No, I wrote my diagnosis. Why are you questioning my answer?”

She said, “Well, most African American women who get breast cancer are triple negative. It’s very prevalent in your ethnic group.”

Now, her questions would’ve have been appropriate if I didn’t know my diagnosis or specifically asked about what type (s) of cancers are prevalent in the black community.

Only, I specifically wrote my diagnosis and verbally told her what I had, yet she still questioned me like I didn’t have a clue of what I was talking about.

It was that moment I realized she didn’t see me as a cancer patient. She saw me as a BLACK cancer patient. Understand the distinction?

Every question from that point was about race. I was there to talk about cancer and not the black experience. I left shortly after that exchange.

Cancer does not discriminate, so why was she?

Let’s fast forward to today.

Many cancer patients, whether in active or post treatment, spend much of their time going to the pharmacy to pick up medication. This pharmacy doesn’t have a drive thru. I was at Target. I needed to pick up my refill of the arthritis medicine. Yes, I have arthritis in my knees and hands. That’s a story for another day.

Though I was only there to pick up my medication, I got a cart to lean on since my fibromyalgia pain is a 12 today. There was a line and no place to sit down.

There was a white mother and her young son in front of me acting up.

She said, “See this BLACK woman? If you don’t hush, she’s going to hit you with her cart.” The kid starts crying. I’m speechless. I saw first-hand how racism is taught. 

Now that little boy will associate black/brown women as harmful, cruel and punishing.

I was paralyzed and slowly backed away and went to another part of the store for a bit before circling back to get my meds. Keep in mind, there was a white woman behind me who witnessed this whole thing. She was conveniently looking down at her cart, not wanting to get involved.

I’ve experienced lots of racism but never in front of an impressionable child where a mother is saying because of my skin color that I would hurt her child.

I’ve even had the same thing said to me at a different pharmacy but that white woman said, “See THIS woman? If you don’t be quiet, she’s going to hit you with her cart.” That happened earlier this year.  

What is it about threatening kids with carts?

I did say something in that instance, and she did a double take when I said it was not okay to say that.

This time was different because this white woman specifically mentioned my skin color. That’s why I felt paralyzed.

I posted this incident on my social media this afternoon. I received many comments of my friends, many white, saying they would’ve stuck up for me and said something to that racist woman. If I were a white woman, I think I would’ve said something.

As a woman of color, I knew to keep my mouth shut and walk away. There is no reasoning with people who have that mindset of hate.

Until next time,

Warrior Megsie