So after my day in the life of a preemie (MRI's, eye exams, venipunctures etc.) I got back to Dr. K's office somewhere around 7 (I'd had to wait a while to get a CD copy of my MRI). The waiting room was dark, everyone else having gone home, and it was just him in his office finishing up some phone calls and paper work, and waiting for me. He was calm but I noticed his hands shook a little when he took a sip of water, and he seemed much more tense and tired than he had that morning. He didn't waste much time in getting to the point. "I asked you to come back here tonight because the radiologist was going to send you to the ER without telling you why and you were going to have to hear this news from people you'd never met before. I preferred to be the one to tell you. You have a large tumor in your right frontal lobe, and significant cerebral edema." Significant cerebral edema...was all I could think about. I thought of cooling babies, children after prolonged cardiac arrest, seizures, brain death, herniation; well at least I wasn't imagining these headaches, was my next thought. The only response I could manage to say was "OK". I was too tired to let it in, to really think about it, all I could think about was getting in my bed. I'm sure he thought there was something seriously wrong with me and my lack of a real reaction to this news. "Do you understand what I'm telling you?" Yes, yes I did. "What questions do you have?" Only one, is it treatable? "Treatable? Yes, definitely...but I can't say it's curable." Ok, fine, we'll deal with that when we have to.
He went on to tell me that he also wanted to talk with me because he did not recommend I go to any DC hospitals. His suggestions were to get to Duke, Hopkins or Columbia, and to get there by tomorrow morning. I asked about Massachusetts hospitals and while he believed there would definitely be someone excellent to see in Boston he didn't know any of the hospitals or doctors there well enough to make a recommendation. He also said if I chose to go to Boston I would need to be on a flight there first thing in the morning. I asked if I could go home, have a chance to talk to my parents, and to sleep in my own bed. He said that was fine since I had been stable up to that point..."stable" a strange word for an ICU nurse to hear describing herself, was I at risk for becoming "unstable"?
The only unfortunate thing I would have to say about him was that for whatever reason he didn't think he could directly refer me to anyone, especially since we did not have an official radiology reading of my MRI, since it was done so late in the day. Therefore he simply wrote a note briefly explaining the "highlights" of my MRI and that I needed to be admitted to a neurosurgery team as soon as possible. He told me to take that, along with my CD of images, to the ER of the hospital I chose...and the ER is never the fastest way into a hospital.
He seemed pretty nervous about letting me leave on my own, asking if I needed to call for a ride but I assured him I would be fine, I wouldn't fall asleep or drive myself off a bridge. I really just wanted to get home, shower and sleep...everything else could be worried about later. He gave me a big bear hug before I left, he was obviously genuinely concerned about me which I did, and do appreciate, definitely one of the best doctors I have met thus far in my life.
So I left, really too tired to take in the events of the day. I called a few friends on the drive home...which maybe I shouldn't have because I scared the living daylights out of them, but I didn't want to keep secrets and I didn't know how the next few days were going to unfold, so I felt the sooner I told them the better.
I called my parents when I got home. Definitely not a fun phone call to make. We decided I would go to Hopkins the next day, it was closest and ranked number 1 in neurology/neurosurgery (if US World & News rankings stand for a lot), my neurologist had also said there was little difference in the three hospitals he recommended and he would have no problems sending his own kids there if they were in the same situation. So Hopkins it was, my amazingly awesome roommate was able to get the day off work to drive me up there and my dad decided he would fly into Baltimore the next morning and meet us there. After we had worked that out I did what I'd been waiting to do all day. Showered and went to bed, and despite the day I'd just had, and the news I got, I still crashed hard.