Hello from the other side!

No, this post has nothing to do with Adele’s new song. This post is about the fact that I’ve made it to the other side! Yay! Saying “welcome to the other side” is how our pineal Cysters greet one another when one of us gets the pineal cyst removed. The other side means you’ve gone from cyst to no cyst, bad to better, hell to out of hell, ill to well, and hopeless to hopeful! I am beyond thrilled to be on the other side!

So to back track, on October 31 my husband and I began the two-day drive from Colorado to Houston where I would have my surgery to remove the pineal gland cyst. After getting settled into our short-term apartment and going through the anesthesia and pre-op appointments that would clear me for surgery, the day finally arrived! On November 4, Dr. Dong Kim, Director of the Mischer Neuroscience Institute, and Chief of Neurosurgery at Memorial Hermann, University of Texas Health Science Center, removed the pineal cystic mass, or “my brain invader” as I referred to it. 

My hero, Dr. Dong Kim (one week after surgery)

 Dr. Kim described the cyst as very large and somewhat irregular based on what it looked like and how tough, or fibrous, the outer shell was compared to what he is used to seeing. But, he managed to remove the entire cyst and the pathology report confirmed it was a benign cyst. The first 24 hours after surgery were spent in the ICU. The second day was spent in a regular room and on day three I was discharged from the hospital. The first three days were pretty awful but no more than I had anticipated. I expected awful!

In ICU with a smile and a "thumbs up!"

 I spent the next two weeks recuperating in an apartment in Houston with exceptional nursing care provided by my husband and my two daughters (Lindsey got to be with me the first week and Stacey got to be with me the second week). I could not have gotten through it without them! It was not pretty and it was not fun, but I was in very good hands and very grateful for their love and assistance! I also felt very supported by the love of my family, friends, and all of my cysters cheering me on!

A few days after surgery

At the end of the second week, with sutures removed and clearance from the surgeon to travel home, my husband and I made the two-day drive back to Colorado where I began the long, slow process of healing. The brain heals slowly and patience is a virtue!

Each day got a little better, except for the days when I felt it was one step forward and two steps back. Healing is not linear, especially not from something so major as a craniotomy and brain tumor removal. The pineal cyst had done its damage from all the pressure it created while sitting in my brain, but the brain surgery itself caused a whole new brain injury. It’s a fine line between doing and overdoing it after surgery and I didn’t always know the difference. However, I've learned to pay attention to my body! It always reprimands me if I overdo anything and punishes me by setting me back an appropriate amount of time. Do-over!

Fortunately, I’ve had nothing on my agenda the past couple of months except for getting well. Even the holidays went by without much of my attention this year, except that I cared that I was still here for them! You see, approaching a surgery like this makes one pause and face mortality as never before. The risks were great. In fact, I took it seriously enough that before I left Colorado to go to Texas I took the time to write “If you are reading this then…” letters to my husband and my daughters and I got all my legal documents in order, just in case I didn’t come back. That was my reality. I couldn’t possibly know the outcome and I wanted to be sure I had said everything I wanted to say just in case it didn’t go well. Always the realist and always prepared, I am! Fortunately none of that was needed!

Now I am more than two months from surgery and I have made a lot of improvement in that time. The pressure headaches and explosive headaches I had before surgery are gone. The nausea and vomiting I had before surgery are gone. Fatigue and lethargy is still slowly improving. I’m still struggling with vision issues and cognitive/memory issues. My surgeon said to give the vision issues at least six months for improvement. I had a phone consult with a neuropsychologist last week about getting a cognitive function assessment and he also told me to give it at least six months for improvement. Patience, my dear, patience!

Surgical scar one month after surgery.

Meanwhile, I’ve had a lot of time to think about everything I’ve been through. I have gained some hindsight looking back on the past year, from getting sick, getting diagnosed with the cyst, the struggle to research and understand how mysterious an illness this is, how few surgeons understand it or will treat it, finding my support group of cysters, finding surgeons who would help me, facing the brain surgery to remove it and then the recovery from it. I feel like I lost almost an entire year to my brain invader, but given the choice of trying to live with the symptoms and illness or taking the risk of having surgery, quality of life won out for me as it always does.

I feel as though not having the cyst isn’t the only thing that has changed for me. The whole experience of this past year has made me tougher, yet softer. Paradoxical! I feel capable of successfully handling very hard things, but I also feel more sensitive than ever. I’ve gained more compassion and find I am more tuned in to the suffering of others. At the same time I have a lot less tolerance for dealing with, well to put it frankly in terms everyone can understand, bullshit! Maybe that’s the result of facing my own mortality and realizing that life truly is precious and that we waste so much of it on BS that doesn’t matter while overlooking those things that do. I'm grateful for this and I'm perfectly fine walking away from that which does not improve or serve my life.

For the next several months I will continue to heal. I don’t know what the future will bring but I’m tossing around some ideas of ways I can help others who are faced with symptomatic pineal gland cysts. There is a lot of misinformation in the medical community about these cysts, too many people who need help, and not enough help available. There’s work to be done, but first I have to give myself ample time to heal. I only get one chance to do it right and nothing is more important right now than healing my brain! The other side is really wonderful and I'm so fortunate to be here!