The Insanity of 2019

I can’t believe 2020 is around the corner. Just when I think a year can’t get any worse or filled with more challenges, I get a whole new slew of health issues. I’ve been reflecting a lot this week. I will make this a two-part series to discuss these challenges and the extraordiary opportunites of 2019.

I compiled a list of health issues that plagued me this year. Get comfy because the list is long!

February

Tried my 5th post breast cancer medication called Aromasin (Exestamine) to help prevent recurrence. Once again, my body is completely intolerant of it. It stressed my body out so badly within the first two weeks that I developed shingles on my left arm, hand and left side of my face.

For those who have never had the shingles, it’s essentially adult chickenpox. According to the handout my dermatologist at Preston Ridge Dermatology, PC gave me, here is the definition of shingles.

They are a painful skin rash that often blisters, caused by the zoster or chickenpox virus. Anyone who has had the chickenpox can get shingles. A weakened immune system seems to play a role in re-awakening this dormant virus, so people are more likely to get shingles after an illness, serious injury or stressful event. It usually occurs only on one side of the body.

Of course mine would be on the cancer side – the left. They are extremely painful and have to be treated within a certain timeframe for antibiotics to work properly.

My oncologist (my 4th one in three years due to previous one retiring) officially agreed there are no other options for the type of breast cancer I had and my pathology. It’s always tough hearing that. He said the only thing left to try is only available if I ever become metastatic. Lovely.

April

I landed in the ER due to severe dehydration and vertigo. I had been feeling odd for about two weeks. My head was pounding. I was quite dizzy and nauseous. I just pushing on and going to work every day.

I started feeling a tightness in my chest and pressure. I had never felt like that before and having difficulty breathing. I was initially going to call an ambulance but knew the cost would break me thanks to the high deductible of my health insurance. Since I only live two exits away from Northside Hospital, I elected to drive myself ever so slowly to the ER around 2am.  I didn’t call my mother or even tell anyone what was going on just yet.

My BP was 187/112 when I arrived to the ER. I didn’t even know blood pressure could get that high. I was scared to death. I realized it must be serious because three doctors came in after reading about my breast cancer history. I finally called my mother around 3am. She was not pleased that I drove myself and waited so late to call her. Once mother arrived, that’s when the doctors told us they feared I would have a stroke. I wasn’t released from the ER until almost 10am after hours of fluids and getting my blood pressure down to a below critical level.

May

Literally two weeks later, I had developed what I thought was the flu. My temp was 104.1. After three days in this misery and temp not going down, I went to my primary doctor’s office and saw the PA. I was tested for the flu but was negative. Again, I was having trouble breathing. When the PA listened to my breathing, she didn’t hear anything concerning. I asked for an x-ray and she agreed. I wanted to be sure.

It was pneumonia!!!!! I wish I had taken a picture of her face when she looked at the x-ray. She shook her head in disbelief and kept saying, “I couldn’t hear it, and would’ve missed it if you hadn’t insisted on an x-ray.”

By this point, I was so physically weak from pushing myself so hard for years on end, that my body officially shutdown. I called my supervisor and said I needed a two-month medical leave. She was so fantastic and immediately supported my decision. It was so sudden in the company’s eyes but a long-time coming in my eyes.

I was basically an empty gas tank.

June

I had my 8th breast cancer related surgery. It was initially revised secondary breast reconstruction due to the extensive fat necrosis that had built up in the exact area of my tumor. During the operation, they discovered not only the extensive fat necrosis but an “underlying association of a necrotic cystic cavity with an extensive capsule.” To break it down, it means I had a thick capsule around the fluid-filled sac, evidence of an old hemotoma and the extensive fat necrosis. Nothing is ever easy with me.

So the pain was much higher than I anticipated. It was the first time ever that I finished a complete bottle of pain medication.  

December

I received a new diagnosis last Thursday. I am very upset this doctor told me I have spondylitis in my spine through the patient portal. I was to call and set up an appointment for next steps. I’m furious she wouldn’t call to actually tell me what that means. So me being me, I have been researching and still have no idea exactly which type I have or anything. I went to a website called myspondylitisteam.com and found this information below.

Spondylitis is an autoimmune disease, meaning that pain and inflammation are a result of the body’s immune system attacking its own tissues. No one knows yet exactly what causes spondylitis to develop in some people, but it is now believed that genetics play a significant role.

More specific subtypes of spondylitis include ankylosing spondylitis, enteropathic arthritis, psoriatic arthritis, reactive arthritis, undifferentiated spondyloarthritis, juvenile spondyloarthritis, and peripheral spondyloarthritis.

I pitched a fit and will be seeing a different doctor at Northside but at a different location than that other doctor. It is unacceptable to give me news of a new diagnosis through the portal.

Needless to say, it’s been another exceptionally rough and painful year on many levels – physically, mentally, emotionally, professionally and financially. Even when I want to give up and just curl into a ball forever, I continue to get up each day and push forward.

I suppose that’s the meaning of resilience. Something deep within will not allow me to give up even when I’m aching to do so.

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.

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