One Year Later: Brave New World
The two great cliches of action shows, "This isn't over!" and "This ends now!" are flipsides of each other. (My Facebook post from December 2, 2015)
One year ago today, I walked to the University of Washington on my regular work commute. But instead of going directly to my office, I first went to the UW Medical Center Radiology Department to get an MRI of my head. We were trying to figure out why I had had a series of seizures starting the previous August. After the MRI I walked to my office, picking up a cup of coffee at Bean and Bagel along the way. As I sipped the coffee at my desk, I could feel a seizure coming on. Because my working theory for so long had been that the first seizure was caused by stress and anxiety, I wondered if this one had been triggered by the coffee. I tried to warn my officemates, Doug and Bill, about what was happening to me, but by then I had already lost the ability to speak. They soon figured out that something was wrong and called our boss, who called 911. The EMTs who checked me out suggested I go to my clinic and see a doctor about the seizure. So my boss drove me to the UW Medicine clinic at Northgate. My regular doctor wasn't available, although he spotted me in the lobby and came over to ask how I was doing. I suspect he had seen the MRI results by then, but I don't know for sure. In any event, there was another doctor who could see me. It was a longish wait before I was let into an examination room, probably because she was reviewing the MRI and discussing it with more senior physicians and preparing herself for what she had to tell me. As soon Dr Sairenji came in, I could see by her face that it was bad news.
She informed me that the MRI showed that I had a tumor in my brain, and the radiologist who read the MRI was calling the tumor glioblastoma -- which later really pissed off my neurosurgeon, because he felt only pathologists can determine the type of cancer, looking at cells from the tumor itself. In retrospect my guess is that an experienced radiologist can probably recognize glioblastoma from the MRI, even if they can't tell the exact type and grade, which is in fact incredibly important information, because Grade I and II are generally not terminal, whereas III and IV (my grade) are. Dr. Sairenji answered my questions and to reassure me as best she could. I'll never forget the sorrow on her face. She had never met me before, but she was the one who had to tell me I had potentially lethal cancer. When I started crying she gave me a light hug with one arm around my shoulders. The news actually wasn't a complete shock, because as soon as I'd had my second and third seizures, three months after the first, I began to wonder whether I might have a tumor. Still, I had tried to set that thought aside and to hope for better news. So in fact -- to heck with the nuance -- the news shocked me to the marrow.
I had called or texted Denys asking if he could come pick me up and take me home, because I knew I wouldn't be going back to work. As soon as I saw his concerned face and started telling him the news, I started sobbing, as he cursed furiously while welcoming me into a big, comforting hug. It was even worse when I got home and called my mom. I doubt it's difficult to imagine how little she wanted to hear my news. All I could think to say was, "I'm sorry. I'm sorry." Undoubtedly the hardest, most heart-wrenching conversation I've ever had in my life.
A lot has happened in the year since that day: surgery to remove the tumor, diagnosis of the tumor (confirming that it was glioblastoma, and of the worst kind), a course of simultaneous radiation and chemo, and then a longer (and ongoing) course of chemo and a new electromagnetic treatment technology called the Optune. It's been a long, hard road, but my family and friends swiftly closed ranks around me and have carried me on their backs through all the turmoil and trouble. My mom, sister, brother, sister-in-law, and Denys have all been particular champions, and I cannot possibly thank them enough for all they've done for me, from feeding me, accompanying me to doctor appointments, advising me when I was confused about the options facing me, and helping to pay off our remaining mortgage, to taking on most of the household chores and changing my Optune transducer arrays twice a week. Many, many other friends have corresponded, created single-issue, single-copy fanzines for me, come to visit, cheered me in Facebook and LiveJournal comments, walked with me to keep my strength up, shared their cancer treatment stories, sent me care packages and gifts of food, books, and music. It's been a crappy year of debilitating treatments, but I've learned a lot about love and friendship in the process, such as the fact that it can be completely invisible to you (or at least to me, Captain Oblivious) until you need it in the worst way. I haven't worked a single day since that first MRI, and I'm in the process of taking a medical retirement. I've made new friends who stepped in without hesitation to give me support. I have added many more Facebook Friends, many of whom I don't know personally, who follow me now because they know my Mom or my sister and want to follow my story, because it's part of their story. Old friends who I'd lost contact with are coming out of the woodwork as the news slowly filters into the world. People have been amazing.
It isn't all friends and family either. I've met with, talked to, and been treated by a phalanx of doctors, neurosurgeons, radiation oncologists, neuro-oncologists, nurse practitioners, registered nurses, receptionists, radiation techs, MRI techs, phlebotomists, clinical psychiatrists, nutritionists, Optune reps, pharmacists, long term disability insurance reps, Social Security Disability Insurance bureaucrats, University of Washington HR bureaucrats, and social workers. It takes a village to treat a cancer patient. Not all of them have been equally competent or caring, but in general I've found the people at the Alvord Brain Tumor Center and at the UW Medical Center as a whole to be very kind and helpful. Good people who are committed to quality of life for the terminally ill. Considering all the bureaucracy involved, it's kind of amazing how good the treatment has been.
A lot has happened in the last year and I'm hopeful that there's more amazement to come, but I thought it was worth marking that a year ago I walked through a door into an examination room and exited a stranger in a strange land that had such people in it.
One year ago today, I walked to the University of Washington on my regular work commute. But instead of going directly to my office, I first went to the UW Medical Center Radiology Department to get an MRI of my head. We were trying to figure out why I had had a series of seizures starting the previous August. After the MRI I walked to my office, picking up a cup of coffee at Bean and Bagel along the way. As I sipped the coffee at my desk, I could feel a seizure coming on. Because my working theory for so long had been that the first seizure was caused by stress and anxiety, I wondered if this one had been triggered by the coffee. I tried to warn my officemates, Doug and Bill, about what was happening to me, but by then I had already lost the ability to speak. They soon figured out that something was wrong and called our boss, who called 911. The EMTs who checked me out suggested I go to my clinic and see a doctor about the seizure. So my boss drove me to the UW Medicine clinic at Northgate. My regular doctor wasn't available, although he spotted me in the lobby and came over to ask how I was doing. I suspect he had seen the MRI results by then, but I don't know for sure. In any event, there was another doctor who could see me. It was a longish wait before I was let into an examination room, probably because she was reviewing the MRI and discussing it with more senior physicians and preparing herself for what she had to tell me. As soon Dr Sairenji came in, I could see by her face that it was bad news.
She informed me that the MRI showed that I had a tumor in my brain, and the radiologist who read the MRI was calling the tumor glioblastoma -- which later really pissed off my neurosurgeon, because he felt only pathologists can determine the type of cancer, looking at cells from the tumor itself. In retrospect my guess is that an experienced radiologist can probably recognize glioblastoma from the MRI, even if they can't tell the exact type and grade, which is in fact incredibly important information, because Grade I and II are generally not terminal, whereas III and IV (my grade) are. Dr. Sairenji answered my questions and to reassure me as best she could. I'll never forget the sorrow on her face. She had never met me before, but she was the one who had to tell me I had potentially lethal cancer. When I started crying she gave me a light hug with one arm around my shoulders. The news actually wasn't a complete shock, because as soon as I'd had my second and third seizures, three months after the first, I began to wonder whether I might have a tumor. Still, I had tried to set that thought aside and to hope for better news. So in fact -- to heck with the nuance -- the news shocked me to the marrow.
I had called or texted Denys asking if he could come pick me up and take me home, because I knew I wouldn't be going back to work. As soon as I saw his concerned face and started telling him the news, I started sobbing, as he cursed furiously while welcoming me into a big, comforting hug. It was even worse when I got home and called my mom. I doubt it's difficult to imagine how little she wanted to hear my news. All I could think to say was, "I'm sorry. I'm sorry." Undoubtedly the hardest, most heart-wrenching conversation I've ever had in my life.
A lot has happened in the year since that day: surgery to remove the tumor, diagnosis of the tumor (confirming that it was glioblastoma, and of the worst kind), a course of simultaneous radiation and chemo, and then a longer (and ongoing) course of chemo and a new electromagnetic treatment technology called the Optune. It's been a long, hard road, but my family and friends swiftly closed ranks around me and have carried me on their backs through all the turmoil and trouble. My mom, sister, brother, sister-in-law, and Denys have all been particular champions, and I cannot possibly thank them enough for all they've done for me, from feeding me, accompanying me to doctor appointments, advising me when I was confused about the options facing me, and helping to pay off our remaining mortgage, to taking on most of the household chores and changing my Optune transducer arrays twice a week. Many, many other friends have corresponded, created single-issue, single-copy fanzines for me, come to visit, cheered me in Facebook and LiveJournal comments, walked with me to keep my strength up, shared their cancer treatment stories, sent me care packages and gifts of food, books, and music. It's been a crappy year of debilitating treatments, but I've learned a lot about love and friendship in the process, such as the fact that it can be completely invisible to you (or at least to me, Captain Oblivious) until you need it in the worst way. I haven't worked a single day since that first MRI, and I'm in the process of taking a medical retirement. I've made new friends who stepped in without hesitation to give me support. I have added many more Facebook Friends, many of whom I don't know personally, who follow me now because they know my Mom or my sister and want to follow my story, because it's part of their story. Old friends who I'd lost contact with are coming out of the woodwork as the news slowly filters into the world. People have been amazing.
It isn't all friends and family either. I've met with, talked to, and been treated by a phalanx of doctors, neurosurgeons, radiation oncologists, neuro-oncologists, nurse practitioners, registered nurses, receptionists, radiation techs, MRI techs, phlebotomists, clinical psychiatrists, nutritionists, Optune reps, pharmacists, long term disability insurance reps, Social Security Disability Insurance bureaucrats, University of Washington HR bureaucrats, and social workers. It takes a village to treat a cancer patient. Not all of them have been equally competent or caring, but in general I've found the people at the Alvord Brain Tumor Center and at the UW Medical Center as a whole to be very kind and helpful. Good people who are committed to quality of life for the terminally ill. Considering all the bureaucracy involved, it's kind of amazing how good the treatment has been.
A lot has happened in the last year and I'm hopeful that there's more amazement to come, but I thought it was worth marking that a year ago I walked through a door into an examination room and exited a stranger in a strange land that had such people in it.