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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Chronically grieving, single and in pain

Grieving again today. I thought I had picked myself back up, so this uncontrollable crying spell this afternoon came as somewhat of a shock.

Though I have left the Catholic church, I have never lost my faith. So, I decided to go to a non-denominational church this afternoon. I really loved the music and the message. During the service, my left lower back started burning. I tried to block it out and focus.

After the service, I decided to have a look around. I was amazed by the number of volunteers, members and beautiful facility. Then my heart dropped.

Seeing the number of families and all the kids in their fantastic kid’s area was a slap to the face. I will never experience a family the way I had always dreamed. What continues to crush me is it wasn’t MY choice to be medically induced into menopause at 40. It’s not a choice when your medical team tells you due to carrying the ovarian genetic marker, family history, intolerant of medications, and my own personal issues with my cervix and ovaries pre-cancer, this is the only way forward.

My mother found these pics today. I was 29 in the pink. So weird to see my natural black hair. I usually wore my hair up in buns, French braids and twists. When I was 29, I still believed in love and that I would have at least one child. I continue to get offended when women especially mention adoption or fostering to me. I know they mean well, but they aren’t hearing me. If I were married or seriously involved with someone, the conversation would be different.

I’m single. At this point, chronically single. I can barely take care of myself and my cat Nathan post-cancer. I have zero energy to even try dating. I look so physically different now. How come some other warriors got their bodies and hair back? I literally look like an entirely different person.

A friend mentioned that I looked “untried” in my younger days. I have been through many, many trials without it physically altering my inside and outside appearance. I’m an onion with tons of layers. You can bet there are some struggles I’ve never openly revealed on social media.

My weight is slowly starting to go down again. That 1 1/2 months on the prednisone really did a number on me. I can tell my appetite is finally back under control. I’m not having intense cravings. I want to actually plan and cook my meals. My thyroid is normal. I’m not even pre-diabetic. Heck, I’m not even anemic right now.

The chronic pain got out of control, and I couldn’t workout without crying in pain. This is another big struggle. I’m realizing that chronic pain is unpredictable. I can feel semi-decent one day and in excruciating pain the next. I didn’t know this would be life with fibromyalgia and neuropathy. This isn’t going away.

I can’t wait for my palliative care appointment at Emory next month. I am very aware I need help. I don’t have coping skills to manage this kind of grief and pain.

Until next time,

Warrior Megsie

Hurting to Heal

***Trigger Warning***

I’ve been in a very dark place lately. It’s honestly the darkest I’ve been in a few years. I was reaching out to friends seeking words of comfort and compassion. Instead, I felt like most have been trying to “fix” me. The whole adage of “You have to want the change” or “You have the power to change your mindset” or “You should seek therapy if depressed” no longer speak to me. The power of thinking positive no longer works for me. Why?

I was on Instagram this morning. I follow a lot of writers and sites that post quotes. The post I read today is what gave me the push I needed to step back from the ledge. This one below from Digesting Grace spoke to me in the way I needed. It spoke to my soul.

Before I saw that post above, I was starting to plan how I would end my life. I’ve had suicidal thoughts in the past. I’ve battled depression since high school. I acknowledge there is a scary darkness within and work hard to push those thoughts away. So far, my sheer will, and stubbornness has kept me from stepping off the ledge. I’m a huge proponent of therapy. I’ve been in therapy for years until recently.

I realized yesterday that my stress level keeps reaching new highs. The palpable grief is either following me or crushing me. I’ve been questioning the point of my life.

I’m in many online cancer support groups. I always see posts of how their husband and kids keep them going, etc. Well, I have neither, so what is the point of my struggle? I don’t have a legacy to pass down. The items I’ve saved and treasured since I was a child through college mean nothing to everyone but me. I can talk about it with friends and their kids, but they won’t fully understand or truly have a vested interest on the level I do because I’m not related to them.

Why would they care that my college cheerleading jacket looks as pristine as the day I received it?

Why would they care about the meaning behind all my tiaras?

Why would they care about my many, many photo albums and journals?

Why would they care about my beloved scrapbooks?

I then realized the following stressors:

  • The anniversary of a personal tragedy is this week.
  • My three-year cancerversary of my lumpectomy/reconstruction and the nightmare of waking up in the recovery room with blood soaking my sheets behind me because none of the nurses saw a tube was loose until I sat up is this week.
  • My one month of leaving the Catholic faith forever is this week.
  • It has been a month since the shingles insanity and stopping the post-cancer medication with my oncologist’s approval.
  • My next mammogram with MRI is on April 1st.
  • I’ve been medically induced into menopause officially two years now.

I don’t physically recognize myself. I consistently struggle with this unnatural chemo-induced curly hair. It will never be naturally straight again. This is it. I’ve been struggling with my weight since I turned 30 thanks to all the different antidepressants, hormone changes and now induced menopause. I was always very thin but muscular up until my 30th birthday. Then add all the steroids from chemo and the many, many surgeries and steroids post-treatment, no wonder I’m presently the size of a southern whale!

When I make the statement the right man for me doesn’t exist in this life, I’m consistently told the right man will love me no matter what size I am. Well, that’s untrue. I’ve always been drawn to preppy or artsy men.  

I’ll talk about race for a hot minute.

I’ve always been teased and bullied by the bulk of black men and women growing up and as an adult. I’m “different” and constantly told over the years that I dress, act and sound white. I’ve heard this within my own family, too. How about I dress, act and sound like an intelligent woman with a bit of flair?

Then I always hear from the bulk of white men and women that I “speak so well” and “you don’t act like you’re black.” What does that even mean?!

When I was Catholic, I would always have white men and women asking me if I go to the black Catholic church. It’s blow after blow of realizing they don’t see me as a woman of this parish. They see me as a black woman of this parish, and therefore, should go to the black parish.

The only type of men I seem to attract (except when I lived in LA) even when I was a size 6 are black thugs with gold teeth or creepy, old white guys. There was the occasional “my type” but the timing or compatibility wasn’t there. That is why I can make the statement that I won’t find love in this life.

When I look at my features (especially when thinner), I’ve always seen more than “just black.” My mother is biracial, and my father is black. My international friends are the only ones who actually notice that I’m a mix of a unique recipe in a beautiful and positive way. ­

I continue to deal with chronic pain, weight gain, unnaturally curly hair, soul crushing loss of what can never be, and what I didn’t know I wanted until all my lady parts were removed with zero sex drive. The enormity of these permanent and unwanted changes literally sucks my breath away.

Yet, seeing that post from Digesting Grace on Instagram this morning has given me the gentle but powerful nudge to find that miracle in my darkness. I suppose that’s what being resilient is all about.

Until next time,

Warrior Megsie