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.

2018 Reflections: Positive spin on what was accomplished

I daresay 2018 brought a lot of pain, loss, frustration, negativity, hopelessness, loneliness and so much more. If I focused solely on that as I reflect about last year, I would just curl into a ball and shrivel away. So, instead of focusing on disappointments and what I didn’t accomplish, I decided to reflect on what I actually DID accomplish in 2018. This idea stems from the free class I took with Lacuna Loft called It’s a Wonderful Life: Taking Care During The Holidays!

My writing: I truly AM a writer

My blog turned a year old. I am so proud of what I have written.  When I reviewed the stats, I could not believe how many people not only read my blog, but also follow it. I am floored by how many countries I have reached!

This is truly a proud moment for me. My blog was planted in pain but grew in love, advocacy and compassion. The comments I received last year whether directly on my blog page or through social media and private messages has let me know that not only have I continued to build my voice, I have helped others discover their own.

Published on the following websites and publications:

  • Lacuna Loft
  • IHadCancer.com
  • CancerBro.com
  • WILDFIRE Magazine
  • Rethink Breast Cancer
  • LoveHope.co
  • Humor Beats Cancer
  • Chronic Love Club

My top connection: Francesca from Elon University

A surprise connection was made through Stupid Cancer on Facebook with the pre-med student Francesca. She reached out to me about a study she was doing on young adults and the fertility conversations with oncology providers.

The timing was perfect because I was in full out grief over not being able to have children due to my cancer treatments. I had been processing the lack of compassion by my oncology team during active treatment, and then how compassionate my oncology team (2nd opinion) was during my post-treatment.  

I underestimated the mental and emotional toll having a hysterectomy/oophorectomy while single would have on me. Then, enter the fabulous Francesca from Elon University with her study. Many of you will remember me posting it in the cancer support groups I belong to because I felt it was so important that our voices be heard.

I never dreamed what would come next…

Francesca asked if I wanted to be co-author of two abstracts that were to be submitted to two major medical conferences. There was no hesitation in saying, “YES!” I helped with editing and formatting the questions in a way that would speak to the young adult cancer community.  

American Psychosocial Oncology Society

Our abstract titled, “You don’t really have a say in anything…like you don’t have any options”: AYA Cancer Survivors’ Perspectives on Fertility Preservation Conversations with Healthcare Providers” was accepted, and we will give a podium presentation at the 16th Annual APOS Conference in Atlanta, GA on February 28 – March 2, 2019.

AND

Society for Adolescent Health and Medicine

Our abstract titled, “The struggles of fertility are more difficult than the struggles of cancer”: Adolescent and Young Adult Cancer Survivors’ Perspectives on Fertility Preservation  was accepted for a Poster Symposia II: Sexual and Reproductive Health oral presentation at the 2019 Annual Meeting of the Society for Adolescent Health and Medicine Washington, DC on March 7, 2019.

Plus, SAHM will publish our abstract in the supplement to the February 2019 issue of the Journal of Adolescent Health.

Francesca and I will finally meet in-person next month after talking on the phone, emailing and texting. She is an amazing and ambitious young woman with so much compassion and determination. Super excited!!!

My job: I’m working!

It has been a rocky road on the career front. Instead of focusing on the stress, I am going to reflect on the fact my brain is professionally razor sharp again. When I had to take part of 2017 and early part of 2018 off to just heal, it was a blow to my ego and finances.

Chemo brain is no joke.

Fatigue is no joke.

I made the tough decision to completely leave the TV and radio industry because my stress level in this “new un-normal” couldn’t handle that kind of fast pace anymore. I took a lot of temp jobs in different industries to see where my skills and new mindset could fit.

In the end, I am a marketing project manager in the staffing industry. There have been a lot of ups and downs at this job, but for the first time ever, I spoke up about the managerial issues. I never would’ve had courage to do that pre-cancer. Of course, I was professional about it, but also did not let up until real change was made.

I ended 2018 by receiving a Spirit Award nomination. People in the company (80+ markets) nominate those who embody spirit, confidence and enthusiasm. I couldn’t believe my eyes when I received the nomination in the mail during the holidays. I haven’t even been there a year, so it’s nice to know I’m making an impact.

My joy: My cup runneth over

Though I’m often raw and dark in my posts, I’m super bubbly and a tad “extra” in-person.  I love wearing fun hair accessories. I’m dramatic. I love to laugh. I love my cat Nathan (Natey) Edgar Chase.

I rekindled old friendships and sparked new ones.

I was able to visit my college after 19 years in October. I have ah-mazing memories from my four years at The College of Saint Rose in Albany, NY. Yep, a GA girl went to college in one of the coldest places on earth. LOL It was like no time had passed. I saw and reconnected with old friends, old haunts and my favorite professor, too!

Most of all, I have found love and acceptance with my tribe of friends, near and far.  

All of this to say, there were beautiful moments in 2018. I’m still alive and pushing through the pain of this “new un-normal.” I have a feeling 2019 is gearing up to be pretty darn special and exciting.

Thanks so much for continuing to ride this cancer train with me. Cheers to 2019!

Until next time,

Warrior Megsie