Invisible Illness Combo with A Side of Wheelchair

It’s tough having an invisible illness while looking relatively young. That old saying, “Don’t judge a book by its cover” is so true. I don’t look like someone who would have a permanent handicap sign. I don’t look like someone who sometimes needs a cane to walk from the car to the store. I most certainly don’t like someone who needs wheelchair assistance at the airport.

Well, for the first time in my life, I requested wheelchair assistance for my flight to and from NYC last week. I didn’t want to admit that I needed help. I knew I would get looks. I also knew I would possibly not be believed. So, when the older guy came over to the ticket counter with the wheelchair, he completely overlooks me and asks the ticket agent who requested the wheelchair. I had even gestured that it’s me, but he asked the ticket agent again who requested it. He was beyond rude. If it hadn’t been 5am I would’ve immediately complained but didn’t want to expend any of my precious little energy going nuclear on this guy.

All was made better when I arrived at LaGuardia airport and had the nicest woman waiting for me with the wheelchair as soon as I walked; okay, slightly hobbled, off the plane. I had told her about my unpleasant experience at the Atlanta airport and she told me to not worry now because I was in good hands. Not only did she wheel me all the way to baggage claim, but she also wheeled me all the way to the cab and also handed my luggage to the cab driver. Now that was star wheelchair treatment.

While I felt okay enough on the flight back to Atlanta, it was a different story once the plane landed. It was a full flight with not much room to stretch my legs. This time it was a younger guy waiting for me with a wheelchair as I not only hobbled but stumbled off the plane because I was in excruciating pain all over my body. The best way to describe fibromyalgia pain is a radiating burning feeling that is felt from head to toe with a big ‘ole headache as the cherry on top. This young man was fantastic! He was pleasant, energetic, and so thoughtful the entire ride to baggage claim. Then he wheeled me all the way up to the MARTA (name of our Atlanta trains) gate, so all I had to do was get up and walk right through it and up the escalator to the platform. Once again, I received star wheelchair treatment.

Of course, as I was driving home, I wondered if I’ll ever feel safe in this body? Will I ever feel strong again? Will it ever not hurt to the point of pushing me to tears from frustration, anger, and pain because I have to deal with this bullshit 24/7? I no longer remember what it feels like to not be in excruciating, burning pain.

So, it’s time to officially reconsider going the medical marijuana route. My primary’s PA actually validated my feelings and has diagnosed me with intractable pain. I’ll write more about this diagnosis next time. She referred me to another doctor who specializes in prescribing medical marijuana. I’ve tried the CBD/THC drops in the past, and they didn’t help with my pain at all. Here’s hoping I find the right method of medical marijuana that will help minimize the pain and not just make me drowsy.

This life on the cancer train often sucks and wish there was a final destination to be able to rest and recover. A girl can dream, right?

Until next time,

Warrior Megsie

You Never Forget The Cancer Call

I’ve been struggling with writing lately. It’s not because I have nothing to say or am uninspired. It’s because I have way too much to say and struggling to get my thoughts written down in a cohesive way. The perfectionist in me doesn’t want to write something awful, yet I need to release some of what has been on my mind lately.

My six-year anniversary of getting the cancer call was on Tuesday, September 14th. I woke up that morning with mixed emotions. It’s one of those memories that will never fade. The flashbacks are clear and packed with emotion. I was working at iHeart Media sitting in my cubicle on 9/14/15. I’d had the biopsy at 4pm on 9/11/15 which fell on Friday that year and was told it would take 48-72 hours to receive the results. I’m always aware of the time because of all my years working in media and making sure the commercials were the correct spot length. I remember looking at my phone when it rang at 3:05pm and not recognizing the number but knowing in my gut to answer.

“Megan-Claire, you have Invasive Lobular Breast Cancer. We don’t know the stage yet. You need to get a pen and paper and take some notes because time is of the essence.”

The entire trajectory of my life changed in an instant. Yes, I’m still alive and “survived,”, but many other warriors I’ve crossed paths with during these six years have died. Why am I still here and they aren’t? They had husbands or wives and children. I don’t. Survivor’s guilt is real. It’s important for people to not negate these feelings because the guilt is just as crushing as the loss of friends. 

I miss them.

I think of their families.

I wish I could’ve taken their place.

So yes, I’m still here but not physically or mentally the same. I’m chronically ill thanks to fibromyalgia, back pain, and neuropathy. I’m in pain every second of every damn day. Some days are manageable and other days it’s off the charts. I literally look like a different person (chemo curls are back) in a body I don’t recognize at all. 

Being naturally resilient is a blessing and a curse. Even when I don’t want to show up for myself I somehow always manage to push up and just do it. I’m fully immersed within the cancer space. There are days where I feel passionate about my advocacy and days where I am utterly drained. I have to continuously remind myself that it’s okay to put myself first and can say no to various requests of my time. That doesn’t mean I am selfish or don’t care. That is self-care.

For the first time in six years, I did not completely wallow on that day. You see, cancer cannot take away the essence of me, you or anyone. Ever. The one constant that brings me pure joy is the arts, specifically the theatre. So, I went to see a musical with another theatre friend that evening. It was the first time I had done something that literally breathed life into me. I fully enjoyed myself and felt the familiar feeling of walking into a theatre and feeling like I was home. It was an evening that cancer could not touch.

Until next time,

Warrior Megsie

Times of Disruption

It has been an extraordinary time filled with opportunities I never dared to dream of. My confidence level continues to rise. I’ve lived more in that past few months than I’ve lived since moving back to Georgia from Los Angeles 17 years ago.

Even with these fabulous professional and advocacy wins, including a new full-time job that I’ll begin August 17th and multiple freelance gigs, there are still feelings of uncertainty. It’s not uncertainty about my abilities as a marketing and writing professional, it is an uncertainty of my body.

Chronic pain is not something I would ever wish on someone. It’s why my cancer journey takes so many gut-punching twists and turns over rocky terrain. I’m in the body of a mummy from the neck down.

There is never a moment where I am not in pain.

There is never a moment where I forget I’m in pain.

There is never a moment where I don’t curse this pain.

As much as I stress about a possible recurrence or metastatic cancer, I stress just as equally about how long I can keep pushing with pain levels that range from 6-20. I remember a telling moment at my 8th and final surgery related to my original breast cancer surgery that I had June 3, 2019 at Northside Cancer Center. While the nurse was prepping me with an IV, she asked what my pain level was at that moment. I told her it was an 8, and she just looked stunned. I was matter of fact and told her about my pain range and that an 8 was tolerable. She just started tearing up and said, “I’m so sorry you’re suffering so much.” It was honestly the first time any emotion had ever been shown by medical staff and I found it oddly comforting. For once, it wasn’t dismissed or even questioned.

My chronic pain is multi-faceted. I wish it were only from fibromyalgia. When you add severe neuropathy in my hands and feet, my senses become overloaded. Then add a herniated disc with a tear near the nerve where I desperately need another epidural steroid injection because the first one didn’t take, then I almost can’t think because the pain is beyond horrific.

It’s a disrupter of time.

It’s a disrupter of sleep.

It’s a disrupter of peace.

So, when others think my cancer story should be over, I simply say no. It never will be because I am reminded at every moment of every day what my cancer treatments and multiple surgeries did to my body. My body is gone. I don’t know this current body. We will always be strangers and never friends because it hurts me on too many levels. Others might be able to move past it, but I cannot. 

Until next time,

Warrior Megsie

Layered Loneliness

I think back to the start of my breast cancer experience five years ago. The struggle to just survive the toxic treatments, multiple surgeries, blood transfusions, and complications post-treatment makes me wonder why am I still here? I was initially filled with such hope once I was officially declared as no evidence of disease – I refuse to say cancer free.

I am now infertile and in medically induced menopause well before my time.

I have fibromyalgia.

I have neuropathy in my hands and feet.

I have a bulging disc and slight tear near the nerve in my back.

And I discovered in January I have two benign lesions on my spine that need to be monitored.

I get so angry when I hear the following comments:

  • “Just be grateful you’re alive.”
  • “Cancer doesn’t define you.”
  • “Be happy you’re single.”

As I listened to various cancer conferences this month, the bulk of the female presenters often begin their talks with how they fought cancer to be there for their kids. Do they ever think about how crushing that is to hear as a single cancer survivor? I don’t mean anyone who divorced during or after treatment. I’m talking about the survivors like me who were single at the start of diagnosis and still single post-cancer.

When I think about it, I honestly didn’t have much motivation to “fight” to survive my cancer treatments. The main reason I did was for my beloved mother and cat Nathan (Natey) Edgar. That’s it.

I am single.

I often feel very alone.

I’m an only child.

My life post-cancer still feels quite isolating.

I don’t have many local friends. I know a lot of people locally, and have many acquaintances, but there is only one who I talk to weekly and would hang out with once a month before the pandemic. The bulk of my friends are out of state and in other counties. Many of them are married with children, or they have a significant other. I don’t really know many single and childless people – male or female.

I always hear that I should just get out there and date. Any guy would be lucky to have me. Well, I would say that would be a true statement, but my color makes dating tough. That’s a whole other story for another day. Now that I am in menopause and in chronic pain 24/7 makes dating feel impossible. The only time my dating life was pretty active, and fun was when I lived in LA in my early to mid-20’s.

I’ve tried so many different medications, surgeries, and supplements to help ease the pain, but nothing has fully worked effectively. What people don’t understand about fibromyalgia is being touched can cause horrific pain. It makes sleep difficult. It makes exercising difficult. It makes simply existing difficult. Then add permanent neuropathy in my feet makes walking difficult.

When I did try dating a little a year post-cancer, I remember one guy asked why I was walking so stiffly. I thought I could hide how painful it can be to even step onto a sidewalk or go up steps. I didn’t bother saying it’s due to cancer. Instead, I said I was sore from working out earlier that day.

How can I even think of dating when I literally cannot hide the physical pain?

Are there any single and childless cancer survivors who are also only children? It’s like lonely, on top lonely, on top of lonely. This is the one time being the only one isn’t an advantage.

Until next time,

Warrior Megsie