Other Pages of Interest

Thursday, March 29, 2018

The Things I Know

Having a brain tumor has taught me a whole lot about what I don't know. Aside from the obvious things - like the future - here are a few that come to mind:

I don't know that I'm brave. I'm scared like crazy. 

I don't know that I'm courageous. I feel like courage is doing something even though you're afraid, and this doesn't feel like that kind of choice. 

I don't know how to field questions from my children in a confident and comforting way. 


The encouraging part of being forced to face things that I never thought possible is that I've learned that I KNOW a whole lot more than I don't know. Here is what I know:

I know that marrying my husband was the best decision I have ever made.

I know that my children are strong and resilient and curious and silly. They are coping with a whole lot of disruption in an impressive way. I know that we have done a good job as parents making our family feel emotionally supported and loved.

I know that I am not alone. My family, friends, neighbors, casual acquaintances and everyone in between has been helpful and supportive and amazing.  Since March 3rd I have wanted for nothing, had virtually all of my chores done for me, seen so many of my favorite people as they came out to visit (laughed and cried with all of them), received meals and cards and gifts and notes. I appreciate ALL of them, even if I haven't been able to thank everyone personally. My network is vast and there is strength in that. 

I know that I am strong in body, mind and spirit. This situation sucks, but I am going to fight like mad to get back to the normal life that I love so much. 


And I know that these three busy, wild, strong-willed jokers make every difficult, frightening, seemingly impossible step required for recovery worth it. 

So, step-by-step I go, head held high, into the unknown. 



Friday, March 23, 2018

The Tumor Made Me Do It

The early morning of March 3 everything changed forever.

Instead of waking up to a little person asking to watch a show or to a silly baby with a 10 pound overnight diaper or to a day full of softball and soccer and movie birthday parties I woke up to a stranger finding a vein to run an IV into my right arm as we very bumpily rode backward to the hospital.

Instead of waking up in my comfortable bed with my loving husband I was on a stretcher. Instead of nursing a wine-headache from the very fun evening with friends the night before, I was a FALL RISK in the ER. My husband, who has emotions of steel, had the puffy red eyes of someone who has been crying for a long time. I also had no recollection of what happened.

Because instead of all of the things above, Jon had been woken up at 4:15am to his wife seizing in the bed next to him, laying unresponsive (though breathing and with pulse) for an additional 10 minutes while he called 911. He was then tasked with finding a neighbor to wake to watch our children while he calmed our newly turned 7 year old who had woken up in the chaos. Then he got to drive to the hospital. He had the unfortunate luck to remember every single detail.

If you ask me, he had the worse morning.

After a seizure they do lots of tests to figure out the root cause. That day was full of firsts: I had my first CT scan, my first MRI, my first consultation with a neurosurgeon, my first referral to a more specialized neurosurgeon. There are few things in life scarier than a NEUROSURGEON telling you that your neurosurgery case is beyond their comfort level. I've seen lots of Grey's Anatomy - those doctors are always accepting the difficult cases, has TV been lying to me all these years?!

As it turns out I have a brain tumor. I had some very vague, easily dismissed symptoms that now can be attributed to this discovery. I have had a slightly more difficult time sleeping. I wake up with an odd, indescribable scent as if it was a weird smell in a dream. I have had a mild increase in overall anxiety. Nothing that made me think something was wrong. Nothing that has gone on for more than 3 months. If I had Web MD searched these symptoms and it came up with "Brain Tumor" I would have had a good laugh with my friends about how ridiculous some people are about internet searching medical advice.

However, sometimes, it's actually a tumor. I was kinda hoping that this wasn't one of those times.

It has to come out. I love our kids and my family and the life we've built together too much to go any other route. We have chosen the best, most aggressive, most skilled surgeon in the country to make me whole again. Well, not totally whole - there will be an actual hole in my brain where the tumor used to live - but maybe they can fill it in with some rare trivia knowledge? Or some sort of skill that I've always wanted like reading music, or playing the guitar, or sign language? For now I'm content with a tumor-free brain, I'll inquire about the other stuff later.

I'm having brain surgery April 3. One month, to the day, after the scariest day of our lives, we will have the new scariest day of our lives. I trust in the surgeon, the team, the hospital and my support network (which is vast). Don't get me wrong, I'm terrified. I'm scared that my children will not know me as a healthy person. I'm scared that my husband has to take on so many more responsibilities in addition to this heavy burden of illness. I'm scared that our lives will never resume the blissful regularity that gives us so much comfort. But, we walk into this unknown with strength and hope and support and love. And for the time being, we live life enjoying the happy, healthy, "normal" days. Like this: