Day 18

February 28, 2014

We tease that Scott is a professional driver, since his job requires him to drive all over the state. He loves to drive. Driving is freedom. Driving is one of those things that I take for granted because it becomes daunting shuttling car loads of noisy teenagers to and from movies, mall, and activities with friends. I forgot how much of privilege driving is because it has become another chore on my long list to do. For Scott, this loss of one of his most prized privileges is very apparent.

We drove to Denver in almost complete silence. For me, it was because I have been used to him driving me around. I like to let him have that control. It feels good to let him take care of me in this way. For him, he was a passenger. Had to let me drive, and do it my way. He tried to hide his disapproval, knowing he had no choice but to let me be the chauffeur this time. But he really can't disguise his feelings that well. Or maybe that was just my empathy talking.

We arrived early. I used the free valet parking provided. We walked in to the hospital and asked for directions. We had done our research on both the facility and the doctor. We felt good about the choice to come here. We walked hand in hand to the elevator that would take us to our fate. We stood in the lobby, waiting for doors to slide open. As they did, it became painfully obvious where we were. Not one, but two gentlemen exited. Both with the a gaunt look, thinner than they should be. One completely bald from chemo and the other pulling an oxygen tank he was hooked up to. There was no question, these were cancer patients.

The statement the first neurologist said came flooding back, "We don't use that term." So if the rest of the world calls it cancer, why NOT? Then as soon as the conversation in my head was over, we stepped off the elevator on the 4th floor and followed the signs to neurology. We had an envelope full of reports and copies of CT scans and MRIs. Scott was tired. He sat on a bench in the lobby and waited for me to get copies made for the doctor. He didn't want to fill out the forms, so I did.

They called his name and we went back. Vitals, weight, and logging in what we were there for and then a brief wait for the doctor. The doctor came in, and we were very delighted at how friendly and straightforward he was. he began with an exam, and then looked at the scans. He repeated basically what the first neurologist has said, "Primary brain tumor." But he did it in a way that gave us, at least for the moment some hope.

He looked at all the images. Explained as he went, showing us what were were looking at and what it meant. Then he said, "Now unfortunately there is more than one thing this could be. It appears to be a primary brain tumor. The kind that originates in the brain and doesn't spread to other parts of the body. There are few possible types of tumor this could be. It could be a glioblastoma. But it could also be a type of brain infection. Encephalitis shows up the same on MRI. The only way we can determine what it is, is to wait some time, take another MRI and compare the two images.

He explained the brain infection, and said that it is a virus and goes away on it's own. If it's that, there will be nothing to do, so no treatment. If the image has increased in size or changed shape, then they will need to do surgery and remove as much of the tumor as possible and get it biopsied to know exactly what type of tumor we are dealing with.

Okay. So. We are talking viral brain infection, or brain cancer. Those are the two options. Okay. So. Now what?

It seemed sort of like we were chit-chatting about last night's score, not a life and death situation. So again, I was the one to blurt out, "So is this life threatening?"

On the slim chance that Scott has a brain infection, it could potentially be life threatening depending on the damage the infection does. But because he is doing so well, the likelihood of it killing or disabling him is very small.

Primary brain tumors, however, have a pretty high mortality rate. The doctor dropped the bomb and said,"If we are dealing with a grade 3 tumor, he could live 4 years. If we are dealing with the extremely aggressive grade 4, he could have 2 to 18 months."

Death sentences in my mind were reserved for serial killers, murders, terrorists and child rapists. Did I really just hear that right? Potentially life threatening means 2 months to 4 years? We said whatever we said. Scheduled the next visit for the follow up MRI and possible surgery. The doctor, very skilled in delivering such devastation, offered me a hug. Compassion in the midst of chaos. I really needed that then, but didn't know how to receive it. I gave him a pat instead. Wiped the tears from my eyes, took a deep breath and helped Scott with his coat.

Hope once again disintegrated.

We entered the elevator to go down, and a strange man got on at the same time. He was wearing a worn and tattered leather jacket. He had mid length grey hair. He short of reminded me of a 80's hair band roadie. He looked at Scott and then at me. He said, "Bad news huh? Is it her?" Scott sort of chuckled and said politely, "Nah, it's me." Humm. Really? Well you look pretty normal to me."

The doors slid open and we left, hand in hand to the valet. I could not hold back any longer. Hot bitter tears stained my cheeks. People were staring and I didn't care. I just wanted to escape this feeling. I wanted the safety of my own surroundings. I wanted something, anything to feel normal again.