Craving My Truth

As much as I love to socialize, I’ve been craving solitude more and more. I have limited energy. In some ways it makes me sad because I do love to talk, but my naturally expressive personality now wears me out. What many people don’t realize is cancer ages the mind, body and spirit.

My mind has been in utter chaos as I’ve tried to process my cancer experience. I wish I could forget the ugly parts of my cancer path. The thoughts and grief refuse to be swept under the rug. They continue to bubble and boil to the surface.

I still can’t fully verbalize all I’ve experienced and continue to experience. That’s why I write and started blogging. All I can do is continue to raise my voice and shed light on the difficulties of a cancer diagnosis. The fear, anxiety and anger never fully disappear. It sometimes moves to the backburner, but never gone.

I had become dependent on Ativan for sleep. My psychiatrist at the time kept enabling me. It took me two years to recognize that fact. Instead of helping me process, she was trying to keep in a sedated frame of mind. I finally saw the light this year and terminated the sessions and weaned myself off the Ativan. It was difficult and definitely caused additional stress to my immune system.

After I finished chemo in February 2016, I was shocked by how old I looked. Dark circles like a panda, pale gray skin and lines like a turkey around my neck. Heck, even my hands looked old. My baby face was gone. What I noticed most was the look in my eyes.

They looked haunted.

They looked pained.

They looked scared.

I still don’t recognize this body. So much has physically changed. The chronic pain wears on my patience. I can’t just get up and go, go, go like I could in the past. Every move is slow and deliberate. I don’t want to fall. I have a permanent handicap sign thanks to neuropathy.

My spirit has also taken a beating. I don’t ask why I got cancer. It was inevitable, especially after looking at my family history. I ask more why did I get cancer under 40 and still alive? I see others whose cancer has metastasized with significant others and families. Why have I been spared – the single cat lady – and not them?

Life post-cancer continues to be a daily struggle. There always seems to be a new pain or issue or unforeseen medical bill popping up.

I crave stability.

I crave my truth.

So, I wrote a poem that was originally crafted using a writing prompt from the Unspoken Ink Writing Class through Lacuna Loft. I finished it this morning.

Until next time,

Warrior Megsie

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A Cancer Triple Threat

For those in the theatre world, you know what that term means. For those not in the theatre world, ‘triple threat’ means you can sing, dance and act. Well, in terms of the cancer world, it means I have neuropathy, fibromyalgia and chemo brain happening at once. I knew I was talented, but this takes it to a whole new level.

I start off each morning with a painful and groaning performance before I even get out of bed. It’s usually been a fitful night of sleep tossing and turning trying to find a comfortable position due to painsomnia. That’s when I access my pain level for the start of my day. I do some stretching to get some circulation flowing, especially my ankles. I have no feeling from the upper balls of my feet through my toes. Zero, nada, nothing. It’s been that way since my very first Taxol chemo treatment. I didn’t know neuropathy could be this severe and happen so suddenly with that first treatment. The permanent damage was done. No acupuncture will help.

Then I move my fingers and warm them up. I have neuropathy in them, too. The nerves are still regenerating in them because I feel tingling and many times stabbing pain like little needles in them, especially when I’m typing, like now. From there I move my head side to side and then stretch my legs.

Now I’m ready for my walk across the stage, aka the bathroom. I always have my cane next to my bed. I wake up with the fibromyalgia pain and osteoarthritis in my knees every day. Lately my hips have been in immense pain. We all know the hips don’t lie.

The groaning turns into a full on one- minute monologue of expletives as I make my way across the stage, hunched over like the Elephant man and holding onto my cane for dear life. Sometimes my fibromyalgia chronic pain is all over my body. It can often feel burning, especially my lower back, legs and arms. Then, of course, the extremely tender points on my neck and shoulders. It can move into my hands as well. That’s the thing about fibromyalgia, it can move, so I never know what to expect each day. The one major chronic pain area that I never, ever feel a smidgen of relief is my lower left back since that blasted hysterectomy/oophorectomy in 2017.

I’m fully awake now and ready for the pièce de résistance. I walk across the stage, aka the living room to the kitchen, with my usual straight posture from years of ballet and musical theatre but slow and short steps because my balance is still off. I see my many post-it-notes, notepads and planner filled with lists and reminders of things I need to do, to buy and to respond to. If I have something super important that I must remember to do that day, I always put a post-it-note on my front door above the locks, so I’ll see it.

I’m already exhausted and haven’t even driven to work yet. That’s my life in the spotlight of being a cancer triple threat.

Until next time,

Warrior Megsie

State of Acceptance

Yes, I’ve stared the cancer beast down and still gracing the earth with my presence, but at what cost? I get asked all the time, “How are you feeling?” and “Feeling any better?” and “Aren’t you happy to be alive?” and “You beat breast cancer!”

The cancer beast still has its claws digging into my flesh, my very existence. The number of health issues and pain I now live with are a direct result from my cancer treatments. I grow tired of the saying, “Make lemonade out of lemons.” At this stage in my life, I’m having to grapple with so much permanent physical change that I constantly feel like the wind has been knocked out of me. I’m gasping for breath yet yearning for control.

For me, I can’t just close the 22-month long breast cancer volumes and move on. Why? It’s because I wake up every day in horrible chronic pain caused by the treatments and surgeries that are currently keeping me alive but not living or thriving.

What throws me for a loop is I was starting to come to terms with the permanent neuropathy in my hands and feet. I was making it work. It was a 1 ½ years after being declared NED that a different and more excruciating type of pain started seeping into my body.

I kept going to my primary and different specialists asking where this pain in my lower back was coming from. Then I noticed my pain would shift without warning to my arms or upper back or legs. A friendly pat on the back or arm would cause me to wince. I started getting frequent headaches. I would tell this to my doctors, and they would say I’m just healing from all the treatments and surgeries. They ran blood test after blood test, costing me hundreds of dollars and each one came back negative.

I knew something was seriously wrong.

I went to a pain management center, but all the doctor wanted to do was put me on opioids. I didn’t want to go that route. I still didn’t feel like I was getting to the root of the problem and felt they were trying to mask the pain.

It wasn’t until October 2018 that I met an amazing rheumatoid specialist at Emory University Hospital in Atlanta. I researched rheumatoid specialists online and came across his name. His reviews are stellar. His background impressive. I decided to try one last time to be heard and see what happens.

It’s an indescribable feeling when a doctor actually hears you and sees you. That’s exactly what happened in his office in that first visit. By this point, I was crying every single day from the pain, all while continuing to work. He looked me into the eyes and said, “We’re going to get this figured out.”

After more in-depth blood tests, they came back negative. It’s at that moment he mentioned Fibromyalgia.

Fibromyalgia is a neurosensory disorder characterized by widespread muscle pain, joint stiffness, and fatigue. The condition is chronic (ongoing), but pain comes and goes and moves about the body. The disorder is often misdiagnosed or unrecognized and is and often complicated by mood and anxiety disorders. Exact cause is not known.

It has been described as Central Pain Amplification disorder, meaning the volume of pain sensation in the brain is turned up too high.

I’ve been pouring over blogs, articles and abstracts relating to chronic pain during my two-month medical leave from work. Before I could accept what’s happening to my body, I had to first understand how and why fibromyalgia was triggered.

The onset was triggered by the hysterectomy and bilateral salpingo oophorectomy I had on 2/15/17. I never fully comprehended on how major of a surgery it was or for my body to handle after going through breast cancer. It caused so much additional trauma to the body that it triggered the fibromyalgia.

Then after more research and watching the fantastic, heartbreaking and informative documentary Unrest on Netflix, I went even deeper and have determined this chronic pain would’ve made its presence known eventually. Though my case isn’t as severe as those in the documentary, it did give me a greater understanding of my body and reframe my mindset.

I had trauma to my system from birth. I was born three months premature and weighed 1 lb. 5 oz at birth. My mother had ovarian cancer during the pregnancy. Her medical team predicted we would either both die or only one of us would live. We defied the odds, and both lived. Aside from extremely low birth weight, my lungs collapsed, grand mal seizures and benign tumor on my right leg. I still have that scar.

The pain and trauma I experienced at birth remained dormant until the major surgeries shocked it back into existence. Of course, I would’ve preferred this happen in my 80’s rather than my early 40’s. At least now I can make more sense as to why I’m dealing with chronic pain now.

I’m finally, finally in a state of acceptance and acknowledge my limitations. I go back to work on tomorrow, July 8th with accommodations requested. I have to do what I must to keep working but also protect my delicate immune system and keep my pain tolerable.

After all, chronic pain never goes away. There is no relief. All I can do is keep it tolerable. It’s mentally and physically draining. I can accept this way of life now, but that doesn’t mean I like it.   

Until next time,

Warrior Megsie

Lessons learned from falling over the edge

Last week was another tough one to get through. I’ve been having difficulty getting my short-term disability claim approved. What set me over the edge was a call from the benefits specialist last Wednesday. He’s the one assigned to my claim. He received the paperwork from the Northside Primary Care office but was surprised by the physician’s statement. All she wrote was I was suffering from anxiety, depression and bipolar. WTF?!

I literally lost it for a few minutes. She mentioned nothing about the chronic pain, chronic fatigue or the number of infections I’ve suffered almost every month for the past six months. I felt betrayed. I felt like I had punched hard in the gut. Why?

I posted in my Facebook cancer support groups of what transpired to get thoughts on it. Many said maybe she was trying to set me up for permanent disability or maybe she wrote the wrong thing and it was meant for another patient. All those comments were disheartening and concerning. I had left messages for the doctor and her nurse via phone and through the portal. No response.

Why would a doctor write this and not notify me first?

Since Monday was a holiday, I let it go. I called first thing on Tuesday and asked to speak to her supervisor. In the end, I spoke directly with the clinical director. He said he would review my case, speak with the doctor and get back to me later that day. I was impressed because he kept his word and called that evening.

He explained that she wrote that diagnosis in her physician’s statement in order to get me approved. I said that all well and good, but she did not reference anything else. He agreed she should’ve notified me what she planning to put in her statement. The issue is nothing she said backed up what Emory Palliative Care and I wrote. How could she leave all the rest out?

The clinical director was impressive. He told me he would call my benefits specialist to clear up any confusion and send whatever additional paperwork that was requested. He told me he would call me Wednesday.

I received the call yesterday evening. The clinical director told me what he said to the benefits specialist, that my claim is being reviewed by the insurance’s doctors and now waiting on a decision. He answered all questions, kept that original doctor’s diagnosis and added the rest of what we discussed.

I told him the issue is the doctor never notified me or returned any of my calls. He agreed. At that point, I felt heard and can let this go. I did tell him to notate in my file that I never want to be treated by that doctor again.

So, now I’m waiting on a decision from the insurance company. I’ve been without income going on four weeks. Thank God for my previous church and my mother. That’s the only reason I can even breathe and finally not stress. Do I feel guilty and ashamed for asking for financial help? A little. I also know when to let pride go and ask for what I need.

My emotions are finally stable again thanks to Lexapro. I realized last week that I needed to get back on an antidepressant. I needed that buffer it gives me to handle the intensity of my emotions. I didn’t want to and fought it at first, but know I made the right decision. The Lexapro in the morning and CBD oil with THC in the evening helps take the edge off.

Putting my health first continues to come at a cost. I was born premature and sick from birth. It’s exhausting and expensive taking care of myself. There have been moments where I’ve felt strong and even invincible. Those days are long gone.

All I can do now is prep for my surgery on Monday, work on understanding this chronic pain and taking care of my mental health. Maybe that is the lesson I needed to learn. I can no longer continue to let these difficult and painful hits to my life completely through me off course and into a tailspin. I need to stop being so reactive so I can focus on being proactive.

Until next time,

Warrior Megsie