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.

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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.