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

Advertisements

I’ve got GRYT

The past few days have been a whirlwind of AH-MAZING experiences and accomplishments.  My co-presenter and co-author Francesca and I presented our abstract on AYA Perspectives on Fertility Preservation Conversations with Healthcare Providers at the American Psychosocial Oncology Society (APOS) conference in Atlanta, GA on Thursday, February 28th. Plus, I got to meet some young adult cancer “celebrities” in-person.  I’ll get to that in a few moments.

I had no idea what to expect at the APOS conference. I’m new to this side of cancer and research. I felt a tad outside of my element but tried to give the appearance of calm, cool and collected. Francesca and I were the third to present. I confess I was getting more and more nervous waiting for our turn to step up to the podium.

I knew our presentation would be authentic, informative and emotional. I’m beyond thrilled that the audience felt the same. Francesca and I bounced off well with each other. All that rehearsal and mouth warm-ups from my theatre days helped. I felt this surge of energy and focus as soon as it was my turn to speak. We were the only presenters who were asked multiple questions from the audience.

I could see some people moved to tears. It is honestly one of the BEST moments and accomplishments in my cancer experience as a writer, speaker, and advocate for young adult cancer thus far.

I must tell you about the three memorable and outstanding moments aside from being a presenter. I FINALLY got to meet the founder of Lacuna Loft, Mallory, in-person AND Aerial who partners with Lacuna Loft and is the program director for the GRYT Health app. As soon as I saw these two powerhouses, I actually got teary-eyed. I have been talking with them, especially Mallory, for two years! I still can’t believe I got to actually talk to and hug them. Plus, they came to hear my presentation.

Oh, there is more! I also got to meet the CEO and founder of the GRYT Health app, David, who also came to my presentation. I thought I had fully embarrassed myself enough in front of Mallory (in pic below) and Aerial because I was totally fangirl-ing. Nope! I completely lost it meeting David (in pic below), too! He’s also a MAJOR deal in the cancer world, and the nicest guy. I was able to hear David speak about his app and the thought, research, and funding behind it. The love he has for his team is inspiring and beautiful.

I’m super jazzed about the GRYT Health app and wanted to share my knowledge about it with you.  This is a peer-to-peer support app.  You can chat with people privately and in group chats. What I really love about this app is the connections made, especially in the group chats. You see, this app truly engages you with different types of programs offered for cancer survivors. I love how the group chats are moderated, too. The very first one I took part in was with Dr. Michael Stubblefield, Medical Director for Cancer Rehabilitation; National Medical Director for Cancer Rehabilitation
Kessler Institute for Rehabilitation. I was able to get direct access to him and ask questions about my neuropathy. I don’t know of any other cancer app that gives survivors this kind of access to major influencers in the cancer world. They also offer a movie club and writing program, just to name a few. Definitely download it and turn on your notifications to get updates.

It will be difficult to go back to my corporate job in the morning. I felt I was making a real difference and really living my passion the past few days. I long for the day when I can turn this passion in my spare time into a fulltime reality.

Until next time,

Warrior Megsie

Morning clumps

The morning started out so well. I was up early, doing some writing and had my outfit for mass ironed. As I began my morning ritual of washing my face, taking a shower and washing my hair, I had to first brush out my hair. These tight curly coils drive me nuts!

After my lovely brushed out Afro, I get in the shower to wash and deep condition it. I had closed my eyes for a moment and when I opened them, I uttered a silent scream. I looked down at my hands and the tub and saw clumps of curls had fallen out. It wasn’t just little hairs. It was CLUMPS. It was so much that I got nauseous and had a panic attack. I just knew that when I got out of the shower that I would be bald.

Damn that PTSD that doctors never believe I possess.

The last time that much hair had fallen out was on 10/25/15, when ALL of my hair fell out in the shower. I can’t ever forget that horrific and beyond traumatic moment. Even though I had shaved my head, it was still so many tiny hairs that all fell out. I had walked into the shower with hair and came out as bald as a newborn.

I panicked thinking the same thing would happen this morning. I kept my eyes closed as I wrapped a towel around my head. I took a deep breath as I removed the towel. I still have a headful of hair and still curly.

I thought the shaking and flashbacks would stop by now. Here it is evening time and the memory is still as clear and fresh as it was this morning and almost four years ago.

So why did so much fall out this morning? Where did these clumps come from?

Is this related to the medically induced menopause?

Is it related to the higher dose of Cymbalta?

Is the constant financial stress of increasing medical bills and cost of living?

Is it from all the physical pain of this nerve in my left back and buttocks?

Is it the constant physical full body pain from the Fibromyalgia?

Is it from the sleep deprivation last week as I tried to wean myself off the Ativan with zero success?

Is it the stress of knowing I need one more surgery to remove the fat necrosis in my left lumpectomy area?

Is it the grief of being infertile and single?

Is it the grief of the soon-to-be anniversary of my nana’s passing?

Is it the grief of being in a constant state of fatigue that I can’t pursue my true passions more intensely?

I guess you could say I have a lot on my plate. Then again, everything in my world is always compounded with so much all at once. I wish I could have even just a week where everything was going right. Massages used to be my thing. What do I do now that I can’t stand being touched?

All of these thoughts lead back to breast cancer. My life on the cancer train continues to move off track and so painful. I hope a smooth path is in the horizon because this constant state of stress, pain, grief, fatigue and anger is wearing me out.

Until next time,

Warrior Megsie