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

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Chronically grieving, single and in pain

Grieving again today. I thought I had picked myself back up, so this uncontrollable crying spell this afternoon came as somewhat of a shock.

Though I have left the Catholic church, I have never lost my faith. So, I decided to go to a non-denominational church this afternoon. I really loved the music and the message. During the service, my left lower back started burning. I tried to block it out and focus.

After the service, I decided to have a look around. I was amazed by the number of volunteers, members and beautiful facility. Then my heart dropped.

Seeing the number of families and all the kids in their fantastic kid’s area was a slap to the face. I will never experience a family the way I had always dreamed. What continues to crush me is it wasn’t MY choice to be medically induced into menopause at 40. It’s not a choice when your medical team tells you due to carrying the ovarian genetic marker, family history, intolerant of medications, and my own personal issues with my cervix and ovaries pre-cancer, this is the only way forward.

My mother found these pics today. I was 29 in the pink. So weird to see my natural black hair. I usually wore my hair up in buns, French braids and twists. When I was 29, I still believed in love and that I would have at least one child. I continue to get offended when women especially mention adoption or fostering to me. I know they mean well, but they aren’t hearing me. If I were married or seriously involved with someone, the conversation would be different.

I’m single. At this point, chronically single. I can barely take care of myself and my cat Nathan post-cancer. I have zero energy to even try dating. I look so physically different now. How come some other warriors got their bodies and hair back? I literally look like an entirely different person.

A friend mentioned that I looked “untried” in my younger days. I have been through many, many trials without it physically altering my inside and outside appearance. I’m an onion with tons of layers. You can bet there are some struggles I’ve never openly revealed on social media.

My weight is slowly starting to go down again. That 1 1/2 months on the prednisone really did a number on me. I can tell my appetite is finally back under control. I’m not having intense cravings. I want to actually plan and cook my meals. My thyroid is normal. I’m not even pre-diabetic. Heck, I’m not even anemic right now.

The chronic pain got out of control, and I couldn’t workout without crying in pain. This is another big struggle. I’m realizing that chronic pain is unpredictable. I can feel semi-decent one day and in excruciating pain the next. I didn’t know this would be life with fibromyalgia and neuropathy. This isn’t going away.

I can’t wait for my palliative care appointment at Emory next month. I am very aware I need help. I don’t have coping skills to manage this kind of grief and pain.

Until next time,

Warrior Megsie