Palliative Care with a bottle of cannabis

This is the farthest down the rabbit hole of utter despair I have ever experienced. I’ve always been prone to depression. I’m an empath; a truly sensitive and creative soul. I’ve battled many tough situations from being bullied in high school and a bit in college to dealing with racism and an abusive relationship to personal tragedy. Those situations pale in comparison to life post-cancer.

I often hear:

“Don’t let cancer define you”

“You can get your life back”

“I want this to be over for you.”

I bristle when I hear this, especially from a fellow cancer survivor/warrior. My cancer experience has not been easy. Yes, I’ve been able to experience some awesome opportunities during active and post cancer that I wouldn’t have had otherwise. My cancer path continues to be difficult and painful on many levels.

I was never informed by my active treatment oncologist of all the possible long-term side effects that could happen after chemo, multiple surgeries and radiation. Each time I would bring up a side effect I would be told, “That rarely happens.” I didn’t feel heard.  

Since October of last year, I’ve battled the following in this order up until today:

Weight began creeping back up

Fibromyalgia diagnosis

Osteoarthritis in knees

Started down the rabbit hole of depression

Pinched nerve in my back = prednisone = weight gain

More nausea = more Zofran

Dermatitis of my eyelids = more prednisone

Received a permanent handicap sign due to severe neuropathy in my feet

Took myself off Ativan after two years

Insomnia

Horrible side effects from Exemestane

Shingles on my left arm thru my hand = excruciating pain

Being told there are NO other medication options to help prevent a recurrence

Higher dosage of Neurontin which turned out to be too much

Swelling of ankles

Weight gain AGAIN

Severe nausea, pounding headache and dizziness

ER trip due to severe dehydration which raised my BP to a dangerous level

Vertigo

Sigh. Seeing this list in writing literally took my breath away. I completely spiraled into utter depression and grief because through all of this I have been working full-time. There has been no time for rest or recovery or even a real vacation. Every penny and any PTO go toward doctor appointments, medication and procedures.

It was my amazing rheumatoid specialist Dr. Tiliakos who heard my cry for help in a portal message a few weeks ago. He asked if I knew about the Palliative Care program at Emory. I freaked out hearing that term ‘palliative.’ I’m not dying yet!  He said it’s not like that at all. It’s another high-level support to take care of patients physically, mentally, spiritually and emotionally.

Oh my God; I have been heard.

My appointment was scheduled for May 14th, but after the ER trip last week, I called in a panic asking to be notified of any cancellations. Lo and behold, I got a call on Wednesday morning asking if I could come in at 2pm. For the first time ever, I dropped everything and just said, YES.

Emory University Hospital is huge. I valeted when I got there. Well, I didn’t know there were multiple valet stations and I was in the wrong building. I started panicking and was crying when I called the office number. The woman who handles all the scheduling actually called me on her cell and went searching for me. She found me and personally walked me all the way to the correct building.

I was floored by her kindness. That was only the beginning.

When the doctor walked into the room, I got very anxious. She immediately put me at ease. This was unlike any appointment with a physician because she typed MY words into her notes. As a writer, I don’t mind someone typing while actively listening. She said, “We treat the whole person, so your words are important and valued to help develop a treatment plan.” Can you guess what happened next? I burst into tears of relief.

She could visibly see the physical and emotional toll battling the chronic pain and all that cancer has taken from me the past three years. Not only did she recommend the marijuana card and cannabis drops but acknowledged that my body is super susceptible to side effects and knows I’m scared of gaining even more weight from the possible munchies. I don’t want that “high.” I just want to be relaxed enough to able to sleep and help deal with the pain.

Next up was meeting the social worker/therapist. She is younger than me but very intelligent with the specialized training I’ve been needing. We were setting up another time to meet for a full session when I said it depends on the cost. When she said, “There is no cost. Once you’re in palliative care, every session is FREE.  You can come as many times during the week that you need. It’s whatever you want to do.” Once again, my tears of utter relief were flowing so hard that I almost couldn’t stop.

For once on this cancer path, I was given a CHOICE. That’s why I’ve been so angry, depressed, anxious and filled with grief because so many choices were made for me. When your medical team says you must have these surgeries and treatments because you will die if you don’t does not bring comfort. It only evoked fear.

I walked out of my appointment with a glimmer of hope. I felt slightly lighter than when I walked into it. To top it off, the scheduler stayed until my appointment was over to personally walk me all the way back to the valet because she didn’t want me to get lost. She didn’t have to do that. She even took time to show me landmarks, so I park or valet in the correct place next time.

The winds of resilience keep pushing me forward…and I’m grateful.

Until next time,

Warrior Megsie

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Power of PTSD: Part II

As I live through my third World Cancer Day, I don’t feel super excitement or jumping around like a cheerleader shouting, “I’m still alive!” Instead, I continue to feel like a shell of who I once was physically, mentally, emotionally and financially. I’m doing well in the spiritual department, which is a refreshing surprise.

I’m constantly being told that one day I will adjust to this “new normal.” My three-year cancerversary is in March and I don’t feel any closer to this acceptance I’m supposed to feel.  Will the grief over my body betraying me ever go away?

I’m struck by PTSD every single time I look in the mirror. It’s bad enough dealing with chronic pain (nerves and joints), insomnia, nightmares and anxiety on a daily basis. Each time I look in the mirror or take a selfie, I’m still surprised by my reflection – the hair, the weight, the skin.

Fellow warriors keep telling me that my hair will go back to how it was pre-cancer. Well, I’m going on three years’ post-chemo and these curly coils seem to be permanent. I know the curls look cute and maybe even make me look younger, but I can’t stop missing my “real” hair. I miss doing French braids, French twists, ballerina buns, pigtails, etc. There aren’t a lot of options with this short hair. It’s growing out and down instead of just down.

Then I look at my skin. It’s so ultrasensitive now. The only fragrance my skin can handle is coconut. I have never liked the smell of coconut.

I had dermatitis flare up on my eyelids, which caused an emergency trip to the dermatologist three weeks ago. This has been happening for the past 15 months or so. My eyelids are so dark from past scratching and irritation. I thought having those horrible dark circles under my eyes was bad enough.

Well, I was freaked out by how suddenly this latest flare-up that happened and the pain. So, instead of seeing the PA, I wanted to see one of the dermatologists to get another opinion. Well, this doctor upset me so badly that I nearly went postal on him. He kept saying stress could be causing this. I kept telling him no and that it must be something I’m using or coming into contact with. Every single time I said that he kept saying it could be stress. My blood pressure was getting to a boiling point.

Once again, a doctor was not hearing me. By the time I left the doctor’s office, I was beyond livid. He said my cancer didn’t cause any of these flare-ups. Um…WTF?! My cancer treatments have directly caused my skin to completely change and become super sensitive. I used to get acid peels back in the day for gosh sakes! Now, I can’t even use perfumed soap!

After talking myself down from almost going postal, I called the dermatologist’s office to file a complaint the next day. Instead of being impulsive, I have learned to sleep on it. If I’m still feeling salty the next day, then I will take action, no matter what.

The woman I spoke with was well-trained because she handled me with such compassion and professionalism that I wanted to reach through the phone and hug her. She didn’t once say, “No one has ever complained about that doctor” or “He didn’t mean to act that way.” She completely validated my feelings and said, “I hear you and so sorry you didn’t feel heard.” She then made sure to note that I don’t ever want to be seen by that doctor again or even walk by him if I have an appointment with someone else because just the thought of running into him would cause undue stress.

I did some detective work with my products to find the one constant item I’ve been using for the past 15 months. I found the culprit – makeup remover wipes. I now use baby wipes. Heck, if it’s gentle enough to use on a baby’s skin, then it should be gentle enough for my eyelids. So far, I am seeing good results.

The fast heartbeat, nausea, angst, and jittery feelings seem to be the norm anytime I go to a doctor appointment, see my reflection or notice yet another side effect popping up. I didn’t ask for any of this. PTSD, as it relates to the cancer experience, is real and not to be ignored.

Until next time,

Warrior Megsie

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