"I see you left your protection at home today, Lasha." my psychologist teased me as I sat on the couch in his office, boxer-dog-less.
"Harley is crate training today." I replied.
But, I didn't come without protection. I don't go anywhere alone. I don't feel safe. If I don't have Harley with me I have my husband with me. That being said, my husband was sitting in the truck, outside the psychologist's office, waiting for my session to end.
"So how are things?" my psychologist inquired.
"Good." I stared at the wall behind him and rubbed my hands together to ease some of the uncomfortable anxiety flowing through me.
"Chris told me you went for a followup MRI and got some disappointing news."
"How are you dealing with being diagnosed with another brain tumor?" my psychologist leaned forward from his big comfy chair.
"I don't know." I replied uncomfortably and started picking at my fingernails.
"You don't seem too concerned about it." he turned his head and raised his eyebrows.
"I'm tired." I replied.
"Yeah, I bet. Do you want to talk about that?"
"I don't know." my gaze shifted from the wall behind him into the palms of my hands. I dreadfully wished I had something to rub with my hands to help distribute this energy elsewhere.
"Do you know what your doctor's action plan is for dealing with this new brain tumor? Chris told me it is growing so it sounds like another surgery may be needed."
"Yeah, I was told in 3 months they will do another MRI. After that, I will be referred to a few specialists to determine if I need surgery, medication, or continued close monitoring."
"Surgery.... hmm, are you ready to deal with the idea of another surgery so soon after your other one?"
"I don't know... I'm..." I trailed off, my brain shut down, mentally and physically I left our discussion.
"You're tired - I know Lasha, stick with me, okay." he brought me back to our conversation.
"How are you dealing with the brain atrophy? Brain atrophy doesn't usually get better - it tends to get worse... does that frighten you? " his questions were like throwing knives straight to the heart.
What else could I say? I tend to shut down when I feel overwhelmed; but, with the help of my psychologist, we are working through/on my HPA (hypothalamus, pituitary, and adrenal gland (the pineal gland is included in this too)) response so I can still function under stress.
When I get stressed, overly tired, overstimulated, or if my body pain gets too high my brain shuts down. It goes into preservation mode and shuts off everything it feels I don't need (at that moment) in order to survive:
- My speech is usually the first thing to go; I can't find words, I forget what I was saying, I can't follow conversations, and that usually follows with copious amounts of swearing (which I don't even realize I am doing).
- My body pain increases; it feels like a horror movie going on inside my very own body. There are knives ripping my muscles apart, electric shocks dispersing throughout my body, muscle spasms that won't stop, deep joint pain, piercing bone pain, itching and burning skin, etc.
- Then, I'll do things like put the milk in the tea cupboard and the tea leaves in the fridge; or, put my medicine bottle cap on my syringe and the syringe cap on my medicine bottle, then freak the *&#! out when it isn't working.
The left side of my brain took a hit from my PGCT (pineal gland cyst/tumor - which was located deep within the left side of my brain), then when I had brain surgery to remove the PGCT it left the left side of my brain injured, and since then, the left side of my brain has started to atrophy.
That's a lot to absorb and take in... really, what should my emotional response be to all of this?
"What were three (3) things you did to help you get through your previous brain tumor?" My psychologist asked.
"I don't know. I would have to think about that. I don't like being put on the spot." I rubbed my eyes in frustration to his never ending prodding questions.
"I know you don't, but it's my job to push you and help you. You know if I ever get diagnosed with a brain tumor you are the one I'm coming to for advice - you're the expert here!" he smiled at me.
Leaving his office that day I felt gutted. I wasn't ready to deal with a second brain tumor, none-the-less, talk about it or the repercussions of my first brain surgery.
But, he left me with homework. Since I couldn't come up with three (3) things, on the spot, he assigned me six (6) things, and asked me to write them down so I would be prepared to talk about it when we saw each other next.
So, what were three (3) things I used to do to help lift my spirits, and bring me hope, when I was dealing with my PGCT (and no, I am not listing six, that's just the rebel in me - haha):
1) I focused on a long term goal:
Whether it was going camping in the summer with my husband, going to see family for Christmas, or researching future education goals to better myself. A long term goal made me feel apart of this world and made me realize that no matter how defeated I felt, I still had hope;
2) I learned to enjoy the little things:
Yes, it sounds cliche, almost everyone you speak to who have gone through a traumatic medical experience always say the same thing, "I learned to enjoy the little things". And, yes, the novelty of that statement can seem overused and sometimes irritating to read.
But it is true! I appreciated the little things so much more.
My cat's snuggles weren't just snuggles, they were a sense of peace and comfort to me while I laid up in bed for days on end.
A simple text message from my husband saying, "I love you and miss you" meant the world because he was thinking of me in a loving manner. His text message showed he didn't resent being my caregiver.
Ultimately, bath time! Every night my husband would come home from work and give me a lukewarm bath with Epsom salt and lavender oil. This made me feel alive after being laid up in bed feeling like death for the day;
3) I spoke up and helped educate people about my illness:
Being a self-advocate can feel selfish, wrong, and frightening. It takes a lot to speak out about something that so little is known; especially, when everyone is telling you that you're crazy and it's all in your head.
Little is known about the Pineal Gland or the effects it has on the human body once it starts to calcify. Our medical communities don't have much research, funding, or education put into this part of the brain, yet. I am no doctor, but I was living with a large PGCT, so I knew how it felt, and, like my psychologist said, "that makes me the expert".
So, I started up an awareness campaign. No, I didn't (and still don't) know nearly enough about PGCTs but I knew I could speak up and tell people what it felt like to have one.
I love writing, but the longer I go postop the more difficult it becomes to formulate, structure, and write down what I want to say (My psychologist reminds me that this is my brain atrophy and I have been encouraged to continue working on it). On the flip side, I have found a few creative outlets which bring me peace and satisfaction to my soul - woodworking and woodburning. I can express myself, my feelings, and my thoughts through these creative pathways.
Knowing that I have a secondary brain tumor battle ahead of me can be daunting. I am coming to terms with the realization that my life has forever changed and nothing will be like it used to. My new "normal" won't be anything I could ever imagine but I must admit I feel blessed being able to learn what my new "normal" is.
Postop, I expected to continue to climb, and climb, and climb until I reached back to where I was before I got so sick. But, that expectation is gone now and I am giving myself grace to move fluidly throughout this life. I don't know what's in store for me but I am still on this earth and I believe that it is for a reason.
Do I have other medical issues? Yes. Is this sad and disheartening at times? Yes. Do I get depressed and wish I died on that operating table? Yes.
I won't lie, brain surgery is difficult but it is possible!
I look back, almost 1 year now, on how far I have come since my first brain surgery, and one day I look forward to being completely brain tumor free.
If you are struggling with an illness, and feel like it continues to compound, continues to push you down, keep your chin up. Life isn't easy, it's never what we expect, and it definitely isn't fair. But it is our life! You are here for a purpose and you do matter to this world. Don't give up - don't give in - keep fighting!
I am keeping you all in my heart for continued healing, grace, and comfort my strong friends.
The PGCT & Mental Health Awareness Campaign