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

Must shatter to discover the woman I need to be

I was in my Unspoken Ink writing class last night with my Lacuna Loft warriors. Below was one of the prompts, which ties perfectly into what I am experiencing right now.

{We are all broken, that’s how the light gets in} Ernest Hemingway

•Bouke de Vries, Peacock I•

Broken is too benign a term. I’m currently shattered. I’ve been giving away too much of light without much in return. I was no longer running on empty or even fumes. I officially stopped running last week.

You know that saying, “Growth and change comes from discomfort. You have to be comfortable being uncomfortable if you want to be extraordinary.” Well, that’s my current stage.

I grow tired of being told I’m so strong. I’ve had to be strong my whole life. I’ve always been an outsider and never really fit in anywhere except when on stage. There’s nothing better than being in the spotlight whether it’s actually performing or giving a speech.

That’s where my true light within starts to shine.

I’ve literally been a swag MEG trying to fit into a round hole. I didn’t take the risks I should’ve taken after college.

Then I get cancer. I pushed through it with humor, but deep down, I was losing myself. How do I grapple with almost dying?

Jump ahead three years later, I’ve been slammed with hit after hit of infections, chemo induced neuropathy, chemo induced fibromyalgia, shingles, severe dehydration, vertigo and now pneumonia. Getting pneumonia was the last straw. I knew I had to make some serious changes, or I would die.

I had to allow myself to completely shatter. I must understand the woman I am now.

I’m chronically single.

I’m childless.

I’m in chronic pain.

I’m grieving.

I’m angry.

I’m depressed.

I’m traumatized.

Somehow, through all this, the winds of resilience keep pushing me forward. There is a glimmer of hope shining in the distance. It’s not totally bleak.

I took a major step that I’ve been scared and uncomfortable to do for some time. I told my boss that I needed to take a two-month leave of absence to work on my health. I still shake thinking about that call on Monday. It was difficult to ask for what I need but had to be done.

I’ve never shattered in such a visceral way on so many levels at once. This is new to me. It’s painful and ugly. I do believe it’s the chronic pain that shoved me over the edge.

I often get asked how I feel. Those who have been through cancer get asked this question a lot and struggle with how honest we should be when answering. I want to scream to stop asking me how I’m feeling! Then I feel like a bitch for snapping.

Don’t people see there is no real relief from chronic pain? The level of it might be less than even the hour before, more tolerable, but IT NEVER LEAVES. I’m literally in pain every blasted day. It wears on me, especially since I am single. I don’t have a husband, boyfriend or kids to help clean, cook or even bring me a glass of water because I’m finally in a good position and know moving will hurt like hell.

That’s my “new not so normal,” and it sucks. I beat cancer and this is how my body decides to react? I’m NOT thriving. If anything, being naturally me, who is always a tad extra, wears me out.

I still get that “survivor envy” of others who seem to be physically excelling where I literally can’t. The CBD oil with THC only helps manage the pain but doesn’t completely take it away. I want to run marathons, relays, climb mountains, etc. I want to feel physically strong again.

I miss my 34-year-old body. That’s the last time I felt strong and was fit. I push through my pain every blasted day just by getting out of the bed and into the shower. As someone who used to perform musical theatre, ballet, salsa and swing dance, I need to get movement back into my life.

Then I remember the severe neuropathy especially in my feet. No amount of acupuncture or supplements or meds will help. The damage is permanent. How can I be dancer without feeling my feet?

So, I’ve shattered and discovering ways to put my pieces back together. I plan on going to some local survivorship programs to work on coping with the permanent damage caused by my cancer treatments. I also need to feed my creative soul again. I refuse to die on a bed of regrets when I have all this talent that sits behind a desk day-after-day.

I’m meant to be on stage. I am determined to figure out how to make this happen. After all, I’m not dead yet. It’s time to stop acting like I’m dead, and somehow claw my way back into the land of the living.

So, I’ve allowed the winds of resilience to fully take hold and push me forward. Time to heal my body and get to know it so I can start pursuing what I was always too scared to do.

Until next time,

Warrior Megsie

Palliative Care with a bottle of cannabis

This is the farthest down the rabbit hole of utter despair I have ever experienced. I’ve always been prone to depression. I’m an empath; a truly sensitive and creative soul. I’ve battled many tough situations from being bullied in high school and a bit in college to dealing with racism and an abusive relationship to personal tragedy. Those situations pale in comparison to life post-cancer.

I often hear:

“Don’t let cancer define you”

“You can get your life back”

“I want this to be over for you.”

I bristle when I hear this, especially from a fellow cancer survivor/warrior. My cancer experience has not been easy. Yes, I’ve been able to experience some awesome opportunities during active and post cancer that I wouldn’t have had otherwise. My cancer path continues to be difficult and painful on many levels.

I was never informed by my active treatment oncologist of all the possible long-term side effects that could happen after chemo, multiple surgeries and radiation. Each time I would bring up a side effect I would be told, “That rarely happens.” I didn’t feel heard.  

Since October of last year, I’ve battled the following in this order up until today:

Weight began creeping back up

Fibromyalgia diagnosis

Osteoarthritis in knees

Started down the rabbit hole of depression

Pinched nerve in my back = prednisone = weight gain

More nausea = more Zofran

Dermatitis of my eyelids = more prednisone

Received a permanent handicap sign due to severe neuropathy in my feet

Took myself off Ativan after two years

Insomnia

Horrible side effects from Exemestane

Shingles on my left arm thru my hand = excruciating pain

Being told there are NO other medication options to help prevent a recurrence

Higher dosage of Neurontin which turned out to be too much

Swelling of ankles

Weight gain AGAIN

Severe nausea, pounding headache and dizziness

ER trip due to severe dehydration which raised my BP to a dangerous level

Vertigo

Sigh. Seeing this list in writing literally took my breath away. I completely spiraled into utter depression and grief because through all of this I have been working full-time. There has been no time for rest or recovery or even a real vacation. Every penny and any PTO go toward doctor appointments, medication and procedures.

It was my amazing rheumatoid specialist Dr. Tiliakos who heard my cry for help in a portal message a few weeks ago. He asked if I knew about the Palliative Care program at Emory. I freaked out hearing that term ‘palliative.’ I’m not dying yet!  He said it’s not like that at all. It’s another high-level support to take care of patients physically, mentally, spiritually and emotionally.

Oh my God; I have been heard.

My appointment was scheduled for May 14th, but after the ER trip last week, I called in a panic asking to be notified of any cancellations. Lo and behold, I got a call on Wednesday morning asking if I could come in at 2pm. For the first time ever, I dropped everything and just said, YES.

Emory University Hospital is huge. I valeted when I got there. Well, I didn’t know there were multiple valet stations and I was in the wrong building. I started panicking and was crying when I called the office number. The woman who handles all the scheduling actually called me on her cell and went searching for me. She found me and personally walked me all the way to the correct building.

I was floored by her kindness. That was only the beginning.

When the doctor walked into the room, I got very anxious. She immediately put me at ease. This was unlike any appointment with a physician because she typed MY words into her notes. As a writer, I don’t mind someone typing while actively listening. She said, “We treat the whole person, so your words are important and valued to help develop a treatment plan.” Can you guess what happened next? I burst into tears of relief.

She could visibly see the physical and emotional toll battling the chronic pain and all that cancer has taken from me the past three years. Not only did she recommend the marijuana card and cannabis drops but acknowledged that my body is super susceptible to side effects and knows I’m scared of gaining even more weight from the possible munchies. I don’t want that “high.” I just want to be relaxed enough to able to sleep and help deal with the pain.

Next up was meeting the social worker/therapist. She is younger than me but very intelligent with the specialized training I’ve been needing. We were setting up another time to meet for a full session when I said it depends on the cost. When she said, “There is no cost. Once you’re in palliative care, every session is FREE.  You can come as many times during the week that you need. It’s whatever you want to do.” Once again, my tears of utter relief were flowing so hard that I almost couldn’t stop.

For once on this cancer path, I was given a CHOICE. That’s why I’ve been so angry, depressed, anxious and filled with grief because so many choices were made for me. When your medical team says you must have these surgeries and treatments because you will die if you don’t does not bring comfort. It only evoked fear.

I walked out of my appointment with a glimmer of hope. I felt slightly lighter than when I walked into it. To top it off, the scheduler stayed until my appointment was over to personally walk me all the way back to the valet because she didn’t want me to get lost. She didn’t have to do that. She even took time to show me landmarks, so I park or valet in the correct place next time.

The winds of resilience keep pushing me forward…and I’m grateful.

Until next time,

Warrior Megsie

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