Raging Against Myself

I’ve had many issues arise before my leave of absence from work and during that were beyond my control and have caused full blown panic attacks. I seem to need more and more time alone in pure silence to calm my thoughts and breathing. Then I thought about how I’m like that 90’s band name Raging Against the Machine. Only, I realized that I seem to be raging against myself.

Why?

Going through cancer while single has literally thrown me off the ledge. Let the rage fest begin.

I rage over constantly fighting my body to just function properly.

  • I can no longer just get up and go anymore. It takes so long to get ready in the mornings because of the chemo induced fibromyalgia and neuropathy. I never thought I would have to deal with this level of chronic pain on a daily basis. There is no real relief from it.

I rage that my life continues to be difficult without breaks. The hits never seem to cease.

  • Just when I think the pieces on my path are finally aligning, I get hit with another problem or infection that causes me to take three steps back instead of forward.

I rage over the never-ending medical bills post-cancer.

  • Why aren’t there more financial resources for post treatment? I found so many grants to help during my active treatment and one-year post but nothing now that I’m three years post. These are lifelong struggles which require many doctor appointments, tests and medications. The financial strain on a single income is suffocating.

I rage over being chronically single with zero strength to even ponder dating again.

  • I honestly don’t think I can ever date again. I have a zero-sex drive. I’m in freaking menopause. I don’t even want to be touched because it hurts thanks to the fibromyalgia. Plus, how I can date someone in the regular world ever again? It was hard enough pre-cancer to find a good fit at the right time. I can’t even have regular conversations because it always reverts to cancer.

I rage that any PTO from work has never been used to take a vacation and have fun. Instead, those days are used for doctor appointments, surgeries or sick days. 

  • How ironic that I finally had to request a leave of absence from work because my body literally gave up on me. I’ve been hit with an infection and chronic pain every single month since October 2018. No wonder I basically keeled over and couldn’t go on. Will my immune system ever be semi decent?

I rage over our healthcare system and having to fight the billing departments from multiple cancer centers and question or review charges.

  • The visceral stress from opening the mailbox and seeing a billing statement and/or invoice almost daily wears on me. Plus, I already pay such a high deductible. I don’t have the strength to work multiple jobs and gain multiple streams of income by myself. It takes everything I have to go work for 8-10 hours a day.

I rage over the hundreds of times I’ve had to advocate for myself to be heard with doctors.

  • I’ve been treated at multiple cancer centers and have seen multiple oncologists and specialists until I was finally heard. I’m sick of so many saying, “That doesn’t typically happen to cancer patients” or “I don’t think this pain is from your treatments.” When are these providers going to learn that every BODY is different? When will they realize they don’t fully understand the long-term side effects that stem from chemo and radiation?

I rage over those inside and outside cancer land who try to “fix” my chronic pain with essential oils, supplements and more unsolicited advice.

  • I’m disgusted by those who give unsolicited advice and think they have the cure to end my chronic pain or whatever else is going on. It’s like these people think I haven’t already tried many of the things they claim “cured” them. Why can’t I just talk about it? Why do I have to justify to non-medical people why I don’t want their unsolicited advice?

I rage over the family life I never knew I wanted and now can never have thanks to my cancer treatments and being medically induced into menopause years ahead of schedule.

  • When your choices are essentially taken away, the grief of wondering what could have been is palpable. It’s so hurtful when people tell me to foster or adopt. It’s like they completely ignore the fact that I am single!!! I can barely take care of myself and my cat, let alone be there for a child alone. Show some sensitivity! Hear me instead of trying to make me feel better.

I rage over physically looking like a completely different woman with these chemo curls. They aren’t natural to me.

  • I truly struggle over “this hair.” Sure, I know it looks cute like a baby giraffe, but it is NOT my natural hair!!! I didn’t grow up with naturally curly hair. Chemo did this, not nature. I didn’t ask for this. The PTSD I feel every single time I look in the mirror tightens my chest and causes tears. My thick eyebrows pre-cancer now must be filled in with a brow pencil. I don’t care that no one else sees the flaws and damage. I am the one who must live with them.

I rage that the treatments, surgeries and pressure to work full-time have visibly aged my face and body by at least five years.

  • It took over two years for the dark circles to fade. I’m in a constant state of fatigue. It shows in my face. My former baby face has been through an unwelcomed war. I see the wear and tear it has caused.

I rage that I no longer know why I’m fighting so hard to stay in this world with no physical legacy.

  • I feel survivors’ guilt so deeply after hearing someone is diagnosed as stage IV and have a husband and children. So, what about those single, childless people? What do we have to live for if not family? Why should we keep fighting to exist in pain when there will never be children or grandchildren? Who do we share our memories with? What is our purpose?

Finally, I rage that after all these years on earth, I’ve become what I always feared – alone and ordinary.

  • How do I stop having survivors’ envy? I see so many survivors running marathons, jumping out of planes, traveling and other really physical activities when I can barely walk the two-mile trail in the park. Why didn’t my body heal and become stronger? If anything, I feel I get physically weaker each day. How is that surviving and thriving?

Though I often feel alone with my rage, I know there must be others who suffer through this in silence. I wish I had the right coping skills to help all of us get through the daily insanity. That’s the hardest part. I want to take action but don’t know how. My current therapist says I’m doing the right things to cope, but I often don’t feel like I’m doing enough. Is this it?

I rage because at the end of the day, I just want to matter and be remembered and LIVE instead of just existing.

Until next time,

Warrior Megsie

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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

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