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.

Advertisements

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.

What the hair?!

I’ve been on cloud nine since my mother gifted me an early birthday present (b-day is July 3rd) of getting my hair blown straight 2x per month for a year. I’ve hated and still don’t understand the chemo curls. Then it hit me as I stared at my reflection this morning after washing my hair and seeing the curls form again. I no longer understand my hair curly OR straight! WTF?!

I know the chemo curls look darling and such. To me, it’s a constant reminder of how unnatural they are and what they represent – the 4 AC and 12 Taxol that nearly killed me. I suffered extremely painful side effects during that hellish five months. Fellow warriors kept telling me the chemo curls were temporary because they had them and then went away. I’m three years post-cancer. Why are they still here? Are mine truly permanent?

I used to have super thick straight hair pre-cancer. It was almost to my shoulders. I could do so much with it – French braid, French twist, ballerina bun, pigtails, ponytails and the list goes on and on.

During that first week of my hair blown straight and seeing the length, I could not stop beaming! I had stopped flinching when I saw my reflection. I recognized this straight hair. I couldn’t believe those tight curls were this long straight.

It is this second week when I realized this straight hair is completely different, too. It’s so much thinner than before. I’m rusty at using my flat iron and products to keep it smooth. The sides are still short. How do I style it, so I don’t look old?

I purposely haven’t worn a fascinator in my hair for two weeks, which has been my trademark with the curly hair. I’ve just worn some snazzy headbands, barrettes and combs. I wanted to see how different I looked without them.

I wanted to feel like ME again.

I wanted to look like ME again.

I can’t even believe I’m saying this but…I STILL don’t recognize ME. I thought wearing my hair straight again would feel natural and complete. My hands can barely hold the flat iron because of the neuropathy. I couldn’t even remember how to braid a few strands. This straight hair is different too.

I will never understand those warriors who say hair doesn’t matter. They completely invalidate the emotional toll losing hair creates and when it grows back entirely different from what we once knew. It DOES matter.

As I washed my hair this morning, it was strange to feel the curls take hold as the water flowed through it. I went in with straight hair and came out with those chemo curls. When I looked in the mirror this time, I still saw a stranger.

Now I fully see that I will NEVER physically look how I did pre-cancer. I’m not the same externally. My weight is up again. My face is fuller. My thick eyebrows are gone and must be drawn. I deal with chronic dermatitis on my eyelids. The corners of my mouth are often dry and cracked. I still have dark circles under my eyes. My lashes aren’t as long as they once were.

That’s a harsh dose of reality I wasn’t prepared to swallow this morning.

Me pre-cancer
Curly vs Straight post-cancer

Until next time,

Warrior Megsie

This isn’t a dress rehearsal…

There were many ups and downs this week. The past three weeks away from work have been spent in hours of solitude, writing, doing some fun things, working on my mental health and having honest conversations with myself.

My rage has been turning me into a very negative person. I really heard it this week. There are trigger phrases that multiple people have said which cause me to viscerally react.

The face of chronic pain will be smiling, laughing and joking. That’s why I bristle when someone says, “You look fine.” What is chronic pain supposed to look like? Do people really think I’ll let them see me hobbling and crying? I will always “look fine” because I mask it from you.

  • What you don’t see and will never see is how I barely sleep.
  • What you don’t see is I need a cane to get out of bed most mornings.
  • What you don’t see is the nausea that hits in the morning and afternoon.
  • What you don’t see are the tears as I get in and out of the shower, praying I don’t fall.

I can’t stop being me and enjoying myself. How is that fair? I keep trying to tame myself because being ME takes a lot of energy. It’s strange that I wear myself out just acting natural.

I’ve always been a proponent of therapy. This isn’t new for me. I’ve suffered from depression and anxiety since I was in high school. The difficult part is finding the right therapist. The fact is a regular therapist won’t work. I need one specialized in chronic illness, who is trained to handle and recognize those added stressors.

My therapist at Emory Palliative Care told me I am coping well. I guess I feel like I should be doing more. Is that the over-achiever in me?

Here’s what I’ve been doing:

  • Made the first step in putting my health FIRST.
  • Made a list of things I want to do that feed my soul creatively.
  • Started journaling and writing more frequently.
  • Unplugging from social media and spending time wrapped in silence.
  • Going to some survivorship programs.
  • Having honest conversations with myself and asking what I WANT.
  • Trying to figure out my limitations.

I’ve also had people asking me if I’m “enjoying this rest.” This time away isn’t a vacation. I’m still highly stressed because my short-term disability hasn’t been approved yet. These constant hurdles to try and take care of myself is causing additional stress. It actually exacerbates my pain, which is not good. I will only rest once I know my bills will be paid.

I bring up being single a lot because it affects so much of my care.

I realized last evening that my biggest fear in my adult life already happened – diagnosed with cancer while single and having to work. The pressure to keep a roof over my head, mounting medical bills, regular bills, upcoming surgery, doctor appointments and medication truly wears on me. I really thought by this age I would’ve met “the one” and have a partner to help ease the pressure.

Getting cancer took away precious time that I’ll never get back. That’s a tough pill to swallow. I’ve literally lost three years of my life to intense stress and fighting to stay alive.

I constantly hear how “stress can kill,” yet no one has solutions of how to keep it low when you’re single.

The toughest challenge I have now is coping and living with chemo induced fibromyalgia. None of my doctors prepared me for the possibility of chronic pain. That’s why I’m in a rage. I kept going to different doctors and specialists until one finally heard me and gave me that diagnosis.

I’m devastated. I need more purpose to get me out of bed each day. I need to find a way to turn my advocacy, blogging and speaking into a career.

I’ve heard from many warriors to “not let cancer define you.” Well, it HAS defined me. I am no longer who I was physically. It has taken so much from me. It HAS changed me.

I may laugh a lot on the surface, but if you look closely, you’ll see the pain and grief. I know that’s why I toggle between rage and negativity. I’ve never dealt with this kind of pain and grief on a daily basis.

My soul is so weary. I long for the day when everything works out and I CAN truly rest and rejuvenate. I want to be able to float instead of struggling to keep my head above water. I deserve to feel free and supported.

So, this isn’t a dress rehearsal. This is real life. I’m giving the performance of a lifetime.

Until next time,

Warrior Megsie