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

Is dating off the table?

This question is more complex than it was before cancer.  I honestly don’t know what to think anymore. I’ve heard of others meeting “the one” during treatment and after. I’m boggled by that.

Who has the energy?

Who has the sex drive?

Who has the funds?

I’ve been a body I don’t recognize since my 35th birthday, which is when I believe the cancer started growing. That’s when my thyroid got out of whack and major weight gain occurred. Even though my energy was somewhat lacking, I was still dating back then.

I’ve had my heart shattered once and deeply hurt once. I had begun to date myself and take time for personal growth when the cancer beast reared its ugly head. Dating was not even a remote thought once the cyclone of appointments swept me up.

I’ve been 43 years old for a month and starting to feel lonely. My life has been so busy trying to heal, battling long-term side effects from chemo, surgeries and radiation, serious depression and anxiety, chronic pain, medical leave, then more surgery and now I’ve had time to really process all that has happened since the cancer call on 9/14/15.

Things won’t magically become all right once I meet the ‘right’ guy.

I can’t expect to find happiness through someone.

I can’t keep waiting for someone to take care of me.

I don’t think like the woman I once was either. I’m jaded. I don’t even watch romance movies anymore. I used to be a sucker for those. I don’t read trashy romance books anymore either.

It’s like a light switch was turned off once I was medically induced into menopause at 40. Losing so many body parts all at once did something to me. I feel hollow. The only thing that makes me still feel like a woman are my tears.

I hear all the time “the right man will love you at your worst.” Well, I think many of you will agree that men are very visual creatures. Sure, I have a pretty face, but not a pretty body.

My body is scarred.

My body is numb in certain areas.

My body radiates and burns with pain.

My body is out of shape and struggling.

My body is utterly fatigued.

How can I date in such a low physical state? It was hard facing rejection when I was stick thin. I sure as hell can’t handle rejection looking and feeling like this.

I also realized that I can’t date a regular guy. I’ve nearly died. I’ve been through something life shattering and life altering. How do I make small talk about trauma? I don’t think lightly anymore.

Does that mean I need to meet someone also has/had cancer in order to relate? Hmm…

Until next time,

Warrior Megsie

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

It’s a troubling world

This world is troubling on so many levels. I can typically handle one thing at a time but not a total shitstorm within two days. I will go ahead and warn this piece will talk about race in relation to cancer.

Believe it or not, race plays a part in the cancer experience. I’ve dealt with many nurses, staff at cancer support communities and fellow warriors in online support groups who automatically assume since I’m black that I must have triple negative breast cancer. They have sometimes talked down to me.

No, this is not my imagination. This is not me being overly sensitive.

I blogged about this particular incident when I first started my blog in November 2017. It’s worth repeating. Some will innately get the insult and frustration. Others will not see why it was a big deal. All I can do is speak my truth.

It was almost a month after I started chemo in October 2015. I decided I needed help processing what was happening. I’ve always been a big supporter of therapy and support groups. I’m a talker and like to talk things out. At that time, I didn’t know any other 39-year old’s going through this. I needed support.

I went to the Cancer Support Community in Atlanta, GA. In order to join a group, there is an intake session with one of the staff members. I had spoken with her on the phone and was really looking forward to meeting her. I was already fatigued, nauseous and had worked a full day by the time I arrived. I was expecting to feel relaxed and heard.

The woman, who was white, gave me paperwork to fill out. Once done, I handed it to her, and she reviewed. This is where my frustration begins.

She asked, “Are you sure you’re not triple negative?” I was puzzled by the question. I knew what my diagnosis was, and it was stage IIA invasive lobular breast cancer. Maybe she couldn’t read my writing, even though my writing is very neat and specific.

She asked again, “I just want to double check. Are you sure you’re not triple negative?”

This time I was annoyed and responded back sharply, “No, I wrote my diagnosis. Why are you questioning my answer?”

She said, “Well, most African American women who get breast cancer are triple negative. It’s very prevalent in your ethnic group.”

Now, her questions would’ve have been appropriate if I didn’t know my diagnosis or specifically asked about what type (s) of cancers are prevalent in the black community.

Only, I specifically wrote my diagnosis and verbally told her what I had, yet she still questioned me like I didn’t have a clue of what I was talking about.

It was that moment I realized she didn’t see me as a cancer patient. She saw me as a BLACK cancer patient. Understand the distinction?

Every question from that point was about race. I was there to talk about cancer and not the black experience. I left shortly after that exchange.

Cancer does not discriminate, so why was she?

Let’s fast forward to today.

Many cancer patients, whether in active or post treatment, spend much of their time going to the pharmacy to pick up medication. This pharmacy doesn’t have a drive thru. I was at Target. I needed to pick up my refill of the arthritis medicine. Yes, I have arthritis in my knees and hands. That’s a story for another day.

Though I was only there to pick up my medication, I got a cart to lean on since my fibromyalgia pain is a 12 today. There was a line and no place to sit down.

There was a white mother and her young son in front of me acting up.

She said, “See this BLACK woman? If you don’t hush, she’s going to hit you with her cart.” The kid starts crying. I’m speechless. I saw first-hand how racism is taught. 

Now that little boy will associate black/brown women as harmful, cruel and punishing.

I was paralyzed and slowly backed away and went to another part of the store for a bit before circling back to get my meds. Keep in mind, there was a white woman behind me who witnessed this whole thing. She was conveniently looking down at her cart, not wanting to get involved.

I’ve experienced lots of racism but never in front of an impressionable child where a mother is saying because of my skin color that I would hurt her child.

I’ve even had the same thing said to me at a different pharmacy but that white woman said, “See THIS woman? If you don’t be quiet, she’s going to hit you with her cart.” That happened earlier this year.  

What is it about threatening kids with carts?

I did say something in that instance, and she did a double take when I said it was not okay to say that.

This time was different because this white woman specifically mentioned my skin color. That’s why I felt paralyzed.

I posted this incident on my social media this afternoon. I received many comments of my friends, many white, saying they would’ve stuck up for me and said something to that racist woman. If I were a white woman, I think I would’ve said something.

As a woman of color, I knew to keep my mouth shut and walk away. There is no reasoning with people who have that mindset of hate.

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

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

This isn’t a dress rehearsal…

There were many ups and downs this week. The past three weeks away from work have been spent in hours of solitude, writing, doing some fun things, working on my mental health and having honest conversations with myself.

My rage has been turning me into a very negative person. I really heard it this week. There are trigger phrases that multiple people have said which cause me to viscerally react.

The face of chronic pain will be smiling, laughing and joking. That’s why I bristle when someone says, “You look fine.” What is chronic pain supposed to look like? Do people really think I’ll let them see me hobbling and crying? I will always “look fine” because I mask it from you.

  • What you don’t see and will never see is how I barely sleep.
  • What you don’t see is I need a cane to get out of bed most mornings.
  • What you don’t see is the nausea that hits in the morning and afternoon.
  • What you don’t see are the tears as I get in and out of the shower, praying I don’t fall.

I can’t stop being me and enjoying myself. How is that fair? I keep trying to tame myself because being ME takes a lot of energy. It’s strange that I wear myself out just acting natural.

I’ve always been a proponent of therapy. This isn’t new for me. I’ve suffered from depression and anxiety since I was in high school. The difficult part is finding the right therapist. The fact is a regular therapist won’t work. I need one specialized in chronic illness, who is trained to handle and recognize those added stressors.

My therapist at Emory Palliative Care told me I am coping well. I guess I feel like I should be doing more. Is that the over-achiever in me?

Here’s what I’ve been doing:

  • Made the first step in putting my health FIRST.
  • Made a list of things I want to do that feed my soul creatively.
  • Started journaling and writing more frequently.
  • Unplugging from social media and spending time wrapped in silence.
  • Going to some survivorship programs.
  • Having honest conversations with myself and asking what I WANT.
  • Trying to figure out my limitations.

I’ve also had people asking me if I’m “enjoying this rest.” This time away isn’t a vacation. I’m still highly stressed because my short-term disability hasn’t been approved yet. These constant hurdles to try and take care of myself is causing additional stress. It actually exacerbates my pain, which is not good. I will only rest once I know my bills will be paid.

I bring up being single a lot because it affects so much of my care.

I realized last evening that my biggest fear in my adult life already happened – diagnosed with cancer while single and having to work. The pressure to keep a roof over my head, mounting medical bills, regular bills, upcoming surgery, doctor appointments and medication truly wears on me. I really thought by this age I would’ve met “the one” and have a partner to help ease the pressure.

Getting cancer took away precious time that I’ll never get back. That’s a tough pill to swallow. I’ve literally lost three years of my life to intense stress and fighting to stay alive.

I constantly hear how “stress can kill,” yet no one has solutions of how to keep it low when you’re single.

The toughest challenge I have now is coping and living with chemo induced fibromyalgia. None of my doctors prepared me for the possibility of chronic pain. That’s why I’m in a rage. I kept going to different doctors and specialists until one finally heard me and gave me that diagnosis.

I’m devastated. I need more purpose to get me out of bed each day. I need to find a way to turn my advocacy, blogging and speaking into a career.

I’ve heard from many warriors to “not let cancer define you.” Well, it HAS defined me. I am no longer who I was physically. It has taken so much from me. It HAS changed me.

I may laugh a lot on the surface, but if you look closely, you’ll see the pain and grief. I know that’s why I toggle between rage and negativity. I’ve never dealt with this kind of pain and grief on a daily basis.

My soul is so weary. I long for the day when everything works out and I CAN truly rest and rejuvenate. I want to be able to float instead of struggling to keep my head above water. I deserve to feel free and supported.

So, this isn’t a dress rehearsal. This is real life. I’m giving the performance of a lifetime.

Until next time,

Warrior Megsie

Must shatter to discover the woman I need to be

I was in my Unspoken Ink writing class last night with my Lacuna Loft warriors. Below was one of the prompts, which ties perfectly into what I am experiencing right now.

{We are all broken, that’s how the light gets in} Ernest Hemingway

•Bouke de Vries, Peacock I•

Broken is too benign a term. I’m currently shattered. I’ve been giving away too much of light without much in return. I was no longer running on empty or even fumes. I officially stopped running last week.

You know that saying, “Growth and change comes from discomfort. You have to be comfortable being uncomfortable if you want to be extraordinary.” Well, that’s my current stage.

I grow tired of being told I’m so strong. I’ve had to be strong my whole life. I’ve always been an outsider and never really fit in anywhere except when on stage. There’s nothing better than being in the spotlight whether it’s actually performing or giving a speech.

That’s where my true light within starts to shine.

I’ve literally been a swag MEG trying to fit into a round hole. I didn’t take the risks I should’ve taken after college.

Then I get cancer. I pushed through it with humor, but deep down, I was losing myself. How do I grapple with almost dying?

Jump ahead three years later, I’ve been slammed with hit after hit of infections, chemo induced neuropathy, chemo induced fibromyalgia, shingles, severe dehydration, vertigo and now pneumonia. Getting pneumonia was the last straw. I knew I had to make some serious changes, or I would die.

I had to allow myself to completely shatter. I must understand the woman I am now.

I’m chronically single.

I’m childless.

I’m in chronic pain.

I’m grieving.

I’m angry.

I’m depressed.

I’m traumatized.

Somehow, through all this, the winds of resilience keep pushing me forward. There is a glimmer of hope shining in the distance. It’s not totally bleak.

I took a major step that I’ve been scared and uncomfortable to do for some time. I told my boss that I needed to take a two-month leave of absence to work on my health. I still shake thinking about that call on Monday. It was difficult to ask for what I need but had to be done.

I’ve never shattered in such a visceral way on so many levels at once. This is new to me. It’s painful and ugly. I do believe it’s the chronic pain that shoved me over the edge.

I often get asked how I feel. Those who have been through cancer get asked this question a lot and struggle with how honest we should be when answering. I want to scream to stop asking me how I’m feeling! Then I feel like a bitch for snapping.

Don’t people see there is no real relief from chronic pain? The level of it might be less than even the hour before, more tolerable, but IT NEVER LEAVES. I’m literally in pain every blasted day. It wears on me, especially since I am single. I don’t have a husband, boyfriend or kids to help clean, cook or even bring me a glass of water because I’m finally in a good position and know moving will hurt like hell.

That’s my “new not so normal,” and it sucks. I beat cancer and this is how my body decides to react? I’m NOT thriving. If anything, being naturally me, who is always a tad extra, wears me out.

I still get that “survivor envy” of others who seem to be physically excelling where I literally can’t. The CBD oil with THC only helps manage the pain but doesn’t completely take it away. I want to run marathons, relays, climb mountains, etc. I want to feel physically strong again.

I miss my 34-year-old body. That’s the last time I felt strong and was fit. I push through my pain every blasted day just by getting out of the bed and into the shower. As someone who used to perform musical theatre, ballet, salsa and swing dance, I need to get movement back into my life.

Then I remember the severe neuropathy especially in my feet. No amount of acupuncture or supplements or meds will help. The damage is permanent. How can I be dancer without feeling my feet?

So, I’ve shattered and discovering ways to put my pieces back together. I plan on going to some local survivorship programs to work on coping with the permanent damage caused by my cancer treatments. I also need to feed my creative soul again. I refuse to die on a bed of regrets when I have all this talent that sits behind a desk day-after-day.

I’m meant to be on stage. I am determined to figure out how to make this happen. After all, I’m not dead yet. It’s time to stop acting like I’m dead, and somehow claw my way back into the land of the living.

So, I’ve allowed the winds of resilience to fully take hold and push me forward. Time to heal my body and get to know it so I can start pursuing what I was always too scared to do.

Until next time,

Warrior Megsie

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