Home is the place we lay our heads at night. It’s the comfort we feel when we walk into our own space, full of our own objects, and filled with our own smells of comfort. It is our safety. It’s our nest.
So, what do you do when you leave your home in search of a new one…not to go to college, not to relocate with a job…but to find a new space where you know you’ll take your last breath?
You do your best.
After bravely agreeing to an eight hour craniotomy, Brittany experienced severe jaw pain, excruciating noise sensitivity, and throbbing headaches.
Despite the painful healing process, Brittany and I remained optimistic after her craniotomy. We made plans for the future and continued to stay positive.
As Brittany recovered and regained strength, she focused on a trip we were planning to take to Alaska. The trip allowed her to mentally escape and focus on something enjoyable. She worked on getting fit and ready to hike. It was a welcomed distraction in the midst of the diagnosis, research, surgeries, and fear.
Before we left for Alaska, Brittany was given an MRI. It took place less than 90 days after her craniotomy.
After the craniotomy, the doctor had reported that he had resected or removed approximately 40 percent of the tumor tissue. He was unable to remove any more because it was tentacled, like an octopus, with the arms twisted in the healthy brain tissue. But, I thought we would see lots of space in Brittany’s cranium in the MRI. Space that would allow her relief from the pressure. Space for the tumor to grow, because we knew it would grow.
Instead, the doctor reading the scans quickly closed the screen and abruptly left the consultation room without saying anything to us.
We looked at each other and Britt said something about it not boding well for her.
When the doctor returned, he opened the MRI scan and told us in a tight, controlled voice that he had never seen anything like this before. The tumor had grown a great deal in the few weeks since the surgery. Where there should have been space, created by the resection, there was glowing angry cancer. “It appears to have jumped grades,” he said. Without tumor tissue, doctors can’t definitively identify the stage of cancer. But the speed of growth and the bright, angry swirls in the image looked distinctly like a glioblastoma.
I did not expect to see that space already filled with new growth so soon. The tumor had grown slowly for a decade, but now, it’s growing was very rapid.
It felt like a sucker punch. It felt like being slammed so hard that the air is knocked out of your lungs. These words were like a forceful blow to my solar plexus, causing a temporary paralysis of the diaphragm. It made it difficult to draw air in.
The cancer monster had roared back, growing faster than before. A glioblastoma is the most aggressive brain cancer.
An unfortunate few.
Doctors still don’t like to talk about this unfortunate circumstance because cutting the cancer out, excising the tumor, is still undeniably the best way to get rid of the cancer. But, there is clearly evidence that for some, ill-fated patients’, surgery does make the cancer worse.
Perhaps doctors don’t fully understand why this happens for these unfortunate few. Surgery is not an isolated incident. It is hard to pinpoint what might make the cancer jump in activity. Some doctors think localized inflammation from the surgery line itself produces eicosanoids, short-lived but highly active hormones. This certainly can happen when steroids are used at the same time. Cancer cells like inflammation and spread faster. The chance that surgery will cause cancer to spread is extremely low but not non-existent. Brittany was proof of this unfortunate truth.
After this MRI, it became clear to me that my daughter was dying and we didn’t have a lot of time. Doctors now talked in terms of months, not years. My daughter needed to feel safe.
The death she faced was a grim one. Since the skull cannot expand in response to the growth of a brain tumor, the first symptoms are usually due to increased pressure in the brain. Headaches, seizures, memory loss and changes in behavior are the first, most common, symptoms. Next, there is a loss in movement or sensation on one side of the body, followed by language dysfunction. Then, loss of speech and cognitive impairments.
Britt would lose her ability to think and reason. She would lose vision and hearing. She would lose the ability to stand or walk. She would experience violent seizures. She would eventually be unable to control her bodily functions.
She knew what she needed for peace of mind. She knew that she didn’t want to die the way a Grade 4 Glioblastoma would force her to die. She wanted options. She wanted to be in Oregon and she wanted to utilize the right to die laws.
I went to my husband and I told him that I needed to get Brittany a home in Portland. I actually told him that I would do this for Brittany, whether he supported it or not, whether Dan supported it or not. I wanted a safe nest for my baby bird and I was going to get one.
In the spring of 2014, I flew to Oregon with my daughter. We were still shocked and wounded from the post-surgical MRI.
The housing market was tight. Not one realtor was interested in showing us rental property. It was discouraging. Finally, someone told us about a website called hotpads.com. There we found rental property listed. After looking at several properties in the rain and hail, we realized that we were going to have to be very aggressive. Rentals went fast. There was not time to mull things over or confer with our husbands. We were going to “girl power” our way through this.
We drove up a hill in the rain and looked at a little yellow house that was one hundred years old. The style of the home resembled a saltbox house, a traditional New England wooden-frame, clap-board house. The little yellow house had a flat front and was two stories.
There were lots of windows letting in the Oregon sun, when it rarely showed its face. The wavy appearance of the window glass distorted images in a lovely surreal sort of way. I found the old windows charming.
While Brittany looked through the downstairs, I crossed the street to look at a curious little homemade glass-doored box with a tiny roof. Inside the box, protected from the unending Portland rain, was a typed poem. The poem was about death and the author, Mary Oliver, seemed to know my daughter. Really know her. The author seemed to know that Brittany lived a wild and precious life and would not leave this world sighing and frightened.
I read the poem slowly, drinking in each word, and shuddered involuntarily. The words seemed like a message, a sign. This was the house. This was where we should be living when Brittany died. The poem was like a benediction. And yet, it was frightening to me, as though someone was watching our lives. I turned to leave, worried that the poem might upset Brittany.
I walked back toward the house and realized it was too late. Brittany had seen me and was on her way over to look at the poem. I walked with her and watched her eyes scan the page, back and forth. She turned toward me and her green eyes glistened with unshed tears.
“This is the house, Momma. This is the house I will die in.”
It was the house Brittany passed away in.
It was not a cottage of darkness, it was a cottage of light. Gary, Brittany and I signed the lease that very day. She and I worked hard to turn the empty rental into a cozy home.
We made that house our home. My baby bird had her nest. While sitting in the house as rain hit the window, Brittany said to me, “This is as good as it gets, Momma, given the hand that life dealt us. This is as good as it gets.”
*Thank you to the forward-thinking people of Portland, especially the good people at Death with Dignity National for providing my daughter with the legal right to die in peace.