The Compassion of a Baby Spoon

Let me tell you what happened Friday. I was in such a good mood. I had taken a vacation day. I woke up with my pain level at an 8, which is tolerable. I took my time getting ready, and then put on my very favorite Christmas hat which makes me giggle. It’s my current profile pic on all my social media. ‘Ain’t it pretty? I was off to my doctor appointment, and then lunch with my mother.

I thought for sure my follow-up would last maybe 15 minutes. That’s what I was prepared for anyway. The original doctor who ordered the CT scan of my spine did not call to tell me I had spondylitis. Heck, I didn’t even see the actual report of the results. She just sent a message in the patient portal to come see her. Naturally, I flipped out, complained and got an appointment with a different doctor within that practice but different location. It’s slightly out of the way, but a nice drive when I don’t have anywhere else pressing to go.

I immediately liked this new doctor because she talked me like a colleague. So, when she pulled up the report and read it out loud, I was not prepared for what it said.

I have two small sclerotic lesions on my L3 and L4 lumbar vertebral body. The report says they’re likely benign but indeterminant at this point.

I have mild lumbar levoscoliosis which is a kind of scoliosis where my spine twists and curves toward the left side of my body in a C shape. 

Then it said I have mild to moderate lower lumbar spondylosis with facet hypertrophy in my L5 and lower spine. Spondylosis is typically a degenerative condition of the joints of the spine and is also known as spinal osteoarthritis. The discs, joints and ligaments of the spine are generally involved.

WTF?!?! Am I 43 or 543 years old?

So, instead of being at the appointment for 15 minutes and walking out with a treatment plan, I was there two hours and walked out absolutely freaked out! As soon as this new doctor read that report and my breast cancer history, she immediately called my oncologist in the room with me. Keep in mind, I had literally seen my oncologist on Thursday and had told him about this appointment. I liked how the new doctor asked my oncologist point blank what kind of tests he is going to order for me because it should come from him. I believe she is Ukrainian, and my oncologist is Russian. I had to listen intently because both accents are thick and fast.

Now I have an MRI with and without contrast scheduled on 12/26 and will get the results at my follow-up visit with my oncologist on 12/31. Once again a vacation day will be spent at a doctor’s office.

Those who think breast cancer is the “easy, free boob job type of cancer” need to be smacked. The complications and rapid aging it can cause the body leads to poor quality of life. I want so badly to apply for disability but know I cannot afford to live on pennies without insurance. Plus, I do love me some designer purses!

For those who missed my social media post about the on-call doctor who I called an asshole, you’re not missing much. I was super anxious and only have two emergency Ativan. I had called to see if I could get some Ativan or Xanax to tie me over either until Monday or thru the 26th. This so-called oncologist completely lacked compassion and empathy. He refused to help or even pull up my chart, which I asked him to do. He yelled at me for yelling at him and said, “I’m THE doctor. You can’t talk to me that way.” Um…no boyfriend, YOU can’t talk to ME that way. What an arrogant prick. After calling him an asshole and hanging up, the asshole proceeded to call back three times. I guess his fragile ego isn’t used to hearing the truth from a mere patient. I did not pick up. I already had my plan B waiting in the wings.

I learned a long time ago that I cannot trust the on-call doctors to actually listen or help, but at least it’s on record that I called asking for help. My friend Carla reminded me of my CBD:THC oil, so that was my plan B. It helped take the edge off so I could rest.

The responses of support and encouragement have been overwhelming and humbling by friends inside and outside the cancerland. Of course, you always have one or two cancer patients/survivors who have as much empathy and compassion as a baby spoon. My feathers get ruffled when other patients try to diagnose me. I know I’m not stage IV and pray I never will be, but when you start diagnosing me and telling me how you know everything because you are stage IV, that’s when I take issue. Fortunately, I’m not close to either one of those ladies who irked me yesterday on Facebook. I said what I needed to say and done with it. I just felt it was important to mention to not ever diminish someone else’s fear and anxiety without knowing their entire history or them personally.

After all, I’m only human with feelings.

This is not how I wanted to spend my last few weeks of 2019. Even if benign, the fear train is riding hard on the tracks because now I’ll have to be monitored in that area.  I was born with a benign tumor on my right leg as a baby. So, it’s not my first time getting tumors and thinking they’re benign. Then if it’s cancer, well…I can’t even fathom it. I’m mentally preparing myself for either outcome.

I will not allow this to my last post of 2019. I’ve had a lot of good and thrilling opportunities to combat the negativity and challenges experienced this year. So, expect that uplifting post this evening.

My Reflection

I somewhat freaked out some fellow coworkers when I showed up to the work happy hour on Friday. Why? Well, I had my hair pulled back. My chemo curls were blown straight last week. I had been wearing it down at work with my usual hair accessories. I had discovered on Friday that my hair is just long enough to pull back if I use a tiny clip and a million bobby pins to hold the sides in place.

So, when I walked into Taco Mac, no one recognized me at first. The looks of surprise were apparent.


No headband. 
No fascinator. 
No hair clips.


Just pure ME.

So why did the bulk of them freak out? One of my male coworkers said he hoped I wear a tiara or flower in my hair on Monday because then I’ll “look like royal one they all know.” I confess I was taken aback by the comment. I thought I looked smashing. I looked like the ME I remember. Then I thought about it and get his comment. I believe he was trying to say the hair bling fits my big personality.

I always wore my hair up or pulled back since I was a kid, teen, young adult and as an adult. Wearing my hair in a ballerina bun, French braid, French twist, pigtails, etc. is very much a part of ME. I used to be svelte and statuesque. I loved brushing my hair and deciding which classy or cute style I would create each day. Then when I added my glasses, I was often described as the “sexy librarian.”

I’ve been working very hard to claim back some parts of ME. I’ve been recognizing my reflection more and more when my hair is blown straight. I finally see the length.  The thing is, others I’ve met post-cancer don’t recognize me this way. They don’t know what I really look liked. Everyone at work knows I’m a cancer survivor because I don’t hide it anymore. So, they either forget these are chemo curls or think they are natural.

Someone commented on my Instagram when I posted a little about this. They said, “Interesting that you don’t see your curls as feminine. I see you as very feminine, but from my view, it’s not the hair but the face.”

To me, I…and I will repeat…I think I look like a chia pet on steroids. The chemo curls make my head look huge! The height of the hair really bothers me. I can’t wear hats when it’s like this. I don’t want “big” hair. I’ve never wanted curly hair. EVER. That’s why I started wearing the hair accessories because I can’t do anything with those chemo curls. The curls are so tight, that I can’t style it. So, I added the bling to feel feminine and give myself the variety I crave.

As a birthday gift, my mother is paying for me to get the chemo curls blown straight 2x per month. Any time I mention this, I always get those saying to get a keratin treatment or sending me pictures of the hair tools they use. Well, I don’t have the physical strength to blow these suckers out. They are TIGHT curls. It takes a lot of arm strength, technique and patience that I don’t have but my stylists do.  

How come no one sees I’m playing a character when I wear my bling? The character of a cancer survivor who doesn’t recognize herself or her body.

I’ve never once felt feminine with the chemo curls unless I have a hair accessory. Notice I never say ‘my’ when I refer to them. To me, they aren’t natural. Poison changed my hair chemistry, not me. It wasn’t MY choice. Why can’t others get that? I’ll say it again. It wasn’t MY choice to have curly hair.

I get sooo many people telling me how cute they are. If they were loose curls, maybe I would agree. I always feel the need to tell people what I used to look like and show the pictures as proof. I wasn’t always this overweight woman with a tight, curly ‘fro. I was fit, classy and stylish.

Am I happy my hair grew back? Of course, I am. Did I think it would grow back entirely different from what was my norm? No. So, I can’t stop being surprised and dismayed every single time I look in the mirror when the chemo curls are there. It’s not what I know.

I’ve always been a tad extra from birth. Adding a hair accessory doesn’t change that. It’s strange the more I’m starting to look like ME with my hair blown straight, no one else seems to recognize me.

My life on the cancer train lately is confusing, painful and disappointing. Yet, it’s also been liberating because I am beginning to see a reflection that is familiar.

I am seeing ME, even if no one else does.

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

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