Updated: Oct 14, 2019
"Well, like, how large is your PGCT anyways? My friend has one and they don't need brain surgery." she snarled at me.
"19mm" I responded.
"Yeah, I guess that's pretty big! Theirs is only 6mm... that's probably why they aren't in as rough shape as you." She replied.
Many people's attitude towards whether or not a person should have brain surgery seems to be based on the size of the tumor, and not their symptoms.
This way of thinking is what causes so much discrimination in the PGCT world. Too many times I have been asked this question and too many times I have received a similar response, which infuriates me!
When dealing with this kind of scenario I can feel little horns growing and an inner voice appears, "So if my brain tumor was smaller than it's okay, I should just go away and stop complaining. It's small, you go now! It's not big - it's no problem - you go. Yes, yes, you go now." I only wish I had the nerve and wit to respond with such.
You know your body better than any friend or family member or doctor or nurse or health practitioner does. When thinking of going in for brain surgery you need to keep this in mind! Your body is just that - IT IS YOURS! Do not let others tell you you don't feel pain when you do. This is one of the biggest problems patients face when dealing with a PGCT - the lack of belief. The belief that something so small could be so damaging.
The question I get asked, now that I am back is, "So Lasha, what was it like to have brain surgery?" I have been asked this hard question several times. To be honest, I don't believe there is a simple uniformed answer to provide - it is so individual.
Because, brain surgery is hard to explain I decided I would tell you parts of my story over my next few blogs. Enjoy!
When I left Fort McMurray I was in a wheelchair, unable to speak, and in excruciating body pain. I went in for brain surgery as "Lasha" and came out of brain surgery as, "Lasha 2.0" as my husband Chris always says.
As I opened my eyes rainbow sparkles were shining around the white sterile room. My lips and inner mouth felt swollen from the breathing tube placed down my throat during surgery.
A male nurse was sitting at the side of my bed, "on a scale of 1 to 10 how great is your pain? 1 being nothing and 10 the most excruciating pain you have ever experienced?"
"7" I replied.
"Okay, we have pain and anti-nausea medication on the way."
I couldn't keep my eyes open, as they shut my mind started to shut down with it, but suddenly I felt a tug in my nether regions! What the heck are they doing to me - hey, at least buy a girl lunch first?
"These Pineal Cyst patients sure have a lot of urine output when they come out of surgery." The one nurse tugging at me exclaimed.
"Yeah the Dr., and I were discussing that the other day." The male nurse piped up.
"Did you know these Pineal Cyst patients put out more urine output than any other brain surgery procedure we do?" The male nurse added.
So that's what she was doing, she was detaching my bag of urine from my catheter... ewe! Gross... how embarrassing (my apologies go out to that nurse for looking after me and my urine output after surgery and lunch is now no longer required - HA).
On the other hand, how interesting is it that Pineal Cyst patients produce more urine output than any other brain surgery patient post-op... and then BAM, I was out like a light.
"Where are my pain meds?" Were the first words I uttered when I woke up for the second time.
"Lasha you are talking" I could see rainbow sparkles running down Chris's face, and BAM, I was out again.
The next time I woke up, Chris was laying on an squeaky uncomfortable looking sofa chair by my hospital bed.
"Hey baby, are you okay?" I said to him.
"I'm doing great! My baby can talk - Lasha you're speaking! How do you feel?"
"I could use my pain meds" I giggled.
Chris learned over and kissed my forehead, "I'll be right back with the nurse".
"I feel good, I feel great, I feel wonderful" I kept repeating this in my mind. This little mantra (if you wish to call it that) or line of positive thinking really did help me stay focused on the fact that these side effects will pass with time. I am out of surgery, I am alive, and I am already on the road to recovery. I cannot stress how much positive thinking needs to be implemented from the very beginning of brain surgery.
Chris came back into the room accompanied by my nurse who was holding a bag of medication and a few needles. One needle was my anti-nausea and the other a blood thinner.
"I'm going to have to put this needle in your stomach, it's to thin the blood because you have been in a wheelchair. If we can't get you to move around it increases your chances for problems after surgery. We don't want any risks so we are going to take care of you."
"Thank you" I muttered as she stuck me with the needle.
I moved my head to the left. INSTANT PRESSURE shot throughout my head, "Ooh, that's doesn't feel good" I stuttered.
"That's your incision" Chris said to me.
I moved my head to the right everything was fine but those rainbow sparkles were sure making me feel nauseous.
At this point, I couldn't see out my right eye, only crazy bright rainbow colors emanated in my sight. My speech was back but was accompanied with stabbing pains in my throat but I wasn't shaking.
Chris leaned over, "should we get our first out of brain surgery picture together?"
"Yes" I replied.
At the time of this picture, I remember being thankful to be there, thankful to be talking to my husband again, and thankful knowing that with each day after I was going to continue to heal.
"One day this will be a memory of a life that used to be ours - only moving forward from here, baby". I said to Chris.
I did more meditating, praying, and positive thinking in the first 3 days out of brain surgery than I had ever done in my life. I felt horrible but I needed to focus my energy on positivity, love, gratefulness, and healing.
Surgery was hard on me, but that is not always the case with some who go through this surgery. My husband spoke to a family who's daughter was also getting her cyst removed, their daughter was in the room next door to us.
Day 2 post-op:
Chris came walking into my room, "Lasha, do you remember that little girl who was in the room across from you the morning of your surgery?"
"It happens she is in the room next door to you here too. I just walked past her room and waved at her parents. Their little girl is up eating and talking a mile a minute." Chris looked shocked and pleased.
"I mean, if I didn't know she had just had brain surgery I never would have guessed".
I was shocked hearing this. I remember seeing this young girl the morning of surgery in the prep room across from me. She was talking a mile a minute to her family back then too. I couldn't believe she was in (pretty much) the same condition and spirits right out of surgery - amazing!
A nurse entered my room and closed the door behind her so I couldn't see the young girl in the prep room across from me playing on her phone and chatting with her parents.
The nurse came over, "Oh girl, you look white as a sheet. You okay?"
"She had a lumbar puncture 3 days ago and she is still feeling the effects." Chris spoke up.
While that little girl was in her pre-op room singing along to the latest Rihanna song I was in my pre-op room vomiting, sweating, and shaking.
"Oh girl, don't you worry. Today is the day you start feeling better! Do you know why you are here?" She asked me.
"I'm getting brain surgery" I whispered to her.
"That's right baby girl! You have been battling this for years now, what's one more hour, hey hunny? You can do this! You got this girl!" The nurse was squeezing and hugging me tight.
"You don't have anything to worry about, not a thing, because in less than an hour you are going to be on your way to recovering!" She repeated as she held onto me tight.
This woman's job was to come into your room and make sure you felt good before going in for surgery. I felt like God had dropped an angel mama into my pre-op room and said, "Here Lasha, a few hugs from heaven before you go in."
I felt so blessed and touched by her presence. When she had walked into my pre-op room I was feeling down and weak.
Back to the story:
Now, hearing from Chris that the young girl came out of surgery so well, and was in the room next to me (in pretty much the same condition as she went in) brought those same envious negative feelings back.
While this young girl was doing, what I perceived to be, laps around her hospital bed being told by her mother to, "settle down, you just got out of surgery, you might hurt yourself",
I was seeing rainbow sparkles and projectile vomiting while repeating, "I feel good, I feel great, I feel wonderful".
By day 2 my miserable attitude towards this young girl changed to admiration, "what a strong girl!" I said to Chris.
My heart soften. In my brain tumor support pages there are many of us suffering. All of us suffering in different, yet, similar ways. With the PGCT being where it is in the brain it affects many parts of the brain; including, our mental health.
If we are not careful, those of us suffering can be quick to lash out in anger or be easily offended by other's comments. Because of where this cyst or tumor is located our emotions can be hard to control. If you are not strong enough to defend your thoughts from being bullied around by your PGCT it is easy to become a mean, judging, distrustful, and angry person.
Many times I have been asked, "How big is your cyst or tumor?" "Is it a cyst or a tumor?"
Seeing the drastic difference between this young girl and my own condition made me realize that neither of those questions matter. I was wheelchair bound - she was dancing. I was diagnosed with Fibromyalgia and Myalgic Encephalomyelitis - she was suffering from headaches.
Yet, both of us came in to have the same brain surgery done. What did it matter classifying who had the worse symptoms or who had the largest tumor; we were both suffering and brain surgery was the only help.
My hope and prayer is that in the future these PGCTs will be acknowledged early on so those suffering can sing and dance to Rihanna before and after surgery too, just like that little inspirational angel.
Thank you for reading part 1 of my PGCT brain surgery journey, I hope you enjoyed it. If so, hit the heart button down below. Also, feel free to leave me a comment down below.
Looking forward to sharing more with you all soon - much love, peace, and grace today special.
~ Lasha Barbosa
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