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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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