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

What the hair?!

I’ve been on cloud nine since my mother gifted me an early birthday present (b-day is July 3rd) of getting my hair blown straight 2x per month for a year. I’ve hated and still don’t understand the chemo curls. Then it hit me as I stared at my reflection this morning after washing my hair and seeing the curls form again. I no longer understand my hair curly OR straight! WTF?!

I know the chemo curls look darling and such. To me, it’s a constant reminder of how unnatural they are and what they represent – the 4 AC and 12 Taxol that nearly killed me. I suffered extremely painful side effects during that hellish five months. Fellow warriors kept telling me the chemo curls were temporary because they had them and then went away. I’m three years post-cancer. Why are they still here? Are mine truly permanent?

I used to have super thick straight hair pre-cancer. It was almost to my shoulders. I could do so much with it – French braid, French twist, ballerina bun, pigtails, ponytails and the list goes on and on.

During that first week of my hair blown straight and seeing the length, I could not stop beaming! I had stopped flinching when I saw my reflection. I recognized this straight hair. I couldn’t believe those tight curls were this long straight.

It is this second week when I realized this straight hair is completely different, too. It’s so much thinner than before. I’m rusty at using my flat iron and products to keep it smooth. The sides are still short. How do I style it, so I don’t look old?

I purposely haven’t worn a fascinator in my hair for two weeks, which has been my trademark with the curly hair. I’ve just worn some snazzy headbands, barrettes and combs. I wanted to see how different I looked without them.

I wanted to feel like ME again.

I wanted to look like ME again.

I can’t even believe I’m saying this but…I STILL don’t recognize ME. I thought wearing my hair straight again would feel natural and complete. My hands can barely hold the flat iron because of the neuropathy. I couldn’t even remember how to braid a few strands. This straight hair is different too.

I will never understand those warriors who say hair doesn’t matter. They completely invalidate the emotional toll losing hair creates and when it grows back entirely different from what we once knew. It DOES matter.

As I washed my hair this morning, it was strange to feel the curls take hold as the water flowed through it. I went in with straight hair and came out with those chemo curls. When I looked in the mirror this time, I still saw a stranger.

Now I fully see that I will NEVER physically look how I did pre-cancer. I’m not the same externally. My weight is up again. My face is fuller. My thick eyebrows are gone and must be drawn. I deal with chronic dermatitis on my eyelids. The corners of my mouth are often dry and cracked. I still have dark circles under my eyes. My lashes aren’t as long as they once were.

That’s a harsh dose of reality I wasn’t prepared to swallow this morning.

Me pre-cancer
Curly vs Straight post-cancer

Until next time,

Warrior Megsie

Raging Against Myself

I’ve had many issues arise before my leave of absence from work and during that were beyond my control and have caused full blown panic attacks. I seem to need more and more time alone in pure silence to calm my thoughts and breathing. Then I thought about how I’m like that 90’s band name Raging Against the Machine. Only, I realized that I seem to be raging against myself.

Why?

Going through cancer while single has literally thrown me off the ledge. Let the rage fest begin.

I rage over constantly fighting my body to just function properly.

  • I can no longer just get up and go anymore. It takes so long to get ready in the mornings because of the chemo induced fibromyalgia and neuropathy. I never thought I would have to deal with this level of chronic pain on a daily basis. There is no real relief from it.

I rage that my life continues to be difficult without breaks. The hits never seem to cease.

  • Just when I think the pieces on my path are finally aligning, I get hit with another problem or infection that causes me to take three steps back instead of forward.

I rage over the never-ending medical bills post-cancer.

  • Why aren’t there more financial resources for post treatment? I found so many grants to help during my active treatment and one-year post but nothing now that I’m three years post. These are lifelong struggles which require many doctor appointments, tests and medications. The financial strain on a single income is suffocating.

I rage over being chronically single with zero strength to even ponder dating again.

  • I honestly don’t think I can ever date again. I have a zero-sex drive. I’m in freaking menopause. I don’t even want to be touched because it hurts thanks to the fibromyalgia. Plus, how I can date someone in the regular world ever again? It was hard enough pre-cancer to find a good fit at the right time. I can’t even have regular conversations because it always reverts to cancer.

I rage that any PTO from work has never been used to take a vacation and have fun. Instead, those days are used for doctor appointments, surgeries or sick days. 

  • How ironic that I finally had to request a leave of absence from work because my body literally gave up on me. I’ve been hit with an infection and chronic pain every single month since October 2018. No wonder I basically keeled over and couldn’t go on. Will my immune system ever be semi decent?

I rage over our healthcare system and having to fight the billing departments from multiple cancer centers and question or review charges.

  • The visceral stress from opening the mailbox and seeing a billing statement and/or invoice almost daily wears on me. Plus, I already pay such a high deductible. I don’t have the strength to work multiple jobs and gain multiple streams of income by myself. It takes everything I have to go work for 8-10 hours a day.

I rage over the hundreds of times I’ve had to advocate for myself to be heard with doctors.

  • I’ve been treated at multiple cancer centers and have seen multiple oncologists and specialists until I was finally heard. I’m sick of so many saying, “That doesn’t typically happen to cancer patients” or “I don’t think this pain is from your treatments.” When are these providers going to learn that every BODY is different? When will they realize they don’t fully understand the long-term side effects that stem from chemo and radiation?

I rage over those inside and outside cancer land who try to “fix” my chronic pain with essential oils, supplements and more unsolicited advice.

  • I’m disgusted by those who give unsolicited advice and think they have the cure to end my chronic pain or whatever else is going on. It’s like these people think I haven’t already tried many of the things they claim “cured” them. Why can’t I just talk about it? Why do I have to justify to non-medical people why I don’t want their unsolicited advice?

I rage over the family life I never knew I wanted and now can never have thanks to my cancer treatments and being medically induced into menopause years ahead of schedule.

  • When your choices are essentially taken away, the grief of wondering what could have been is palpable. It’s so hurtful when people tell me to foster or adopt. It’s like they completely ignore the fact that I am single!!! I can barely take care of myself and my cat, let alone be there for a child alone. Show some sensitivity! Hear me instead of trying to make me feel better.

I rage over physically looking like a completely different woman with these chemo curls. They aren’t natural to me.

  • I truly struggle over “this hair.” Sure, I know it looks cute like a baby giraffe, but it is NOT my natural hair!!! I didn’t grow up with naturally curly hair. Chemo did this, not nature. I didn’t ask for this. The PTSD I feel every single time I look in the mirror tightens my chest and causes tears. My thick eyebrows pre-cancer now must be filled in with a brow pencil. I don’t care that no one else sees the flaws and damage. I am the one who must live with them.

I rage that the treatments, surgeries and pressure to work full-time have visibly aged my face and body by at least five years.

  • It took over two years for the dark circles to fade. I’m in a constant state of fatigue. It shows in my face. My former baby face has been through an unwelcomed war. I see the wear and tear it has caused.

I rage that I no longer know why I’m fighting so hard to stay in this world with no physical legacy.

  • I feel survivors’ guilt so deeply after hearing someone is diagnosed as stage IV and have a husband and children. So, what about those single, childless people? What do we have to live for if not family? Why should we keep fighting to exist in pain when there will never be children or grandchildren? Who do we share our memories with? What is our purpose?

Finally, I rage that after all these years on earth, I’ve become what I always feared – alone and ordinary.

  • How do I stop having survivors’ envy? I see so many survivors running marathons, jumping out of planes, traveling and other really physical activities when I can barely walk the two-mile trail in the park. Why didn’t my body heal and become stronger? If anything, I feel I get physically weaker each day. How is that surviving and thriving?

Though I often feel alone with my rage, I know there must be others who suffer through this in silence. I wish I had the right coping skills to help all of us get through the daily insanity. That’s the hardest part. I want to take action but don’t know how. My current therapist says I’m doing the right things to cope, but I often don’t feel like I’m doing enough. Is this it?

I rage because at the end of the day, I just want to matter and be remembered and LIVE instead of just existing.

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