I never have nightmares. Never. I rarely remember any of my dreams. But I’ve had a couple so vivid that they woke me up like a nightmare would. Except they weren’t nightmares. Just incredibly powerful and vivid dreams. So vivid, in fact, that for the first few moments after I had woken up I wasn’t sure if I had been dreaming at all.
I had the first dream several years ago, long before I was diagnosed with cancer. In this dream I met Jesus. No words were spoken, and none were needed. I simply felt this overwhelming presence and a sense of inner peace I’d never felt before. I felt safe. I felt loved. Any cancer patient can tell you how important those two things are. Was it vision? I really don’t know, but the mystic in me couldn’t disavow the thought.
Then a month before I got diagnosed I had another incredibly vivid dream. This one only seemed to take on meaning after my diagnosis. I was riding on a train somewhere in India. When the train came to a stop at the station, I saw my mother standing there waiting for me on the platform. I felt startled and confused because even in my dream I knew that she was dead.
So I ran out to see her as fast as I could. She just looked at me sadly, gave me a hug, and simply said “I’m sorry,” and then I woke up. Again, for a few moments I wasn’t sure if I had been dreaming or had just gone through some other worldly experience.
I couldn’t stop thinking that maybe this time it was indeed a vision, a foretelling. Did she know I was about to be diagnosed with cancer just two years after she died from it? Or maybe “I’m sorry” was an expression of her sadness for not being here to be, well, a mom. My mom. She always made me feel safe and loved, unconditionally, in a way only a mother can.
I can’t count the number of times I’ve wanted to call her, to hear her voice one more time. I miss her. I no longer feel safe.
Friday, August 24, 2018
Saturday, August 4, 2018
Ghosts of July
Watching my mother mourn my father’s death was the hardest thing I’ve
ever had to endure. I was 15, my sister nearly 10. Sometimes I think my
sister is lucky because she doesn’t really remember any of it. My
father’s death shaped my entire life, but for her, he was simply someone
she never knew. Perhaps I was the lucky one after all.
My father was 44 when he died of a brain tumor. After his death my biggest concern was living longer than he had. I became obsessed with it to the point that my birthdays had no meaning, even the “big” ones — 16, 21, 30, 40. None of those milestones mattered. Only 45. But the day I turned 45 I felt no different than I had the day before. I was still haunted by the memory of my mother’s sorrow. The vision of her breaking down, crying, and overwhelmed with grief, falling into the arms of a neighbor, was just as vivid then as the day it had happened 30 years earlier.
My mother remarried a few years later and settled back down into a life of normalcy. She went back to school, got her Master’s Degree, and started teaching second grade in a nearby elementary school. She taught there until her retirement. I always thought her students must have been the luckiest kids in the world. My mother was an amazing woman. Love and compassion flowed through her veins. She was more than a teacher. She enriched the lives of her students. She cared for each and every one of them like they were her own children.
My sister and I were both at my mother’s bedside when she died. She succumbed to a particularly aggressive form of cancer that started in her appendix. Dying from cancer that began in an essentially useless organ seemed to me as some kind of cosmic joke. But it wasn’t funny at all. And then there was the day she was declared “cancer free,” only for it to come back three months later and finish its job. Cancer is wickedly clever like that. You’re here today and gone tomorrow. Literally.
My mother didn’t want to die in a hospital room, so she came home to hospice when nothing more could be done. My sister flew in from Philadelphia and I drove in from Kansas City. I was only an hour away, so I just drove in every morning to be with my mother and went home each night to be with my family.
I’ve always found solace in driving back to my home town. For the most part it was a beautiful drive through rural Missouri – the place where I had grown up, where life had been simple and innocent and pure, a place I had never forgotten. Any other summer I would have looked forward to the cold comfort of my mother’s iced tea, the flicker of fireflies in the yard, and the cadence of cicadas in the trees. Now they were simply ghosts of July.
Hospice didn’t last very long, but then again, I suppose it’s not supposed to. My mother quickly fell into a coma and died a few days later. I would talk to her as she lay comatose, telling her l loved her every chance I got. I rarely told her that when she was alive, but mostly because it’s just one of those things I was never very good at. I often swore to myself that the next time I would try harder. There’s always tomorrow, I’d say. Well, there is, I learned, until there isn’t.
My father was 44 when he died of a brain tumor. After his death my biggest concern was living longer than he had. I became obsessed with it to the point that my birthdays had no meaning, even the “big” ones — 16, 21, 30, 40. None of those milestones mattered. Only 45. But the day I turned 45 I felt no different than I had the day before. I was still haunted by the memory of my mother’s sorrow. The vision of her breaking down, crying, and overwhelmed with grief, falling into the arms of a neighbor, was just as vivid then as the day it had happened 30 years earlier.
My mother remarried a few years later and settled back down into a life of normalcy. She went back to school, got her Master’s Degree, and started teaching second grade in a nearby elementary school. She taught there until her retirement. I always thought her students must have been the luckiest kids in the world. My mother was an amazing woman. Love and compassion flowed through her veins. She was more than a teacher. She enriched the lives of her students. She cared for each and every one of them like they were her own children.
My sister and I were both at my mother’s bedside when she died. She succumbed to a particularly aggressive form of cancer that started in her appendix. Dying from cancer that began in an essentially useless organ seemed to me as some kind of cosmic joke. But it wasn’t funny at all. And then there was the day she was declared “cancer free,” only for it to come back three months later and finish its job. Cancer is wickedly clever like that. You’re here today and gone tomorrow. Literally.
My mother didn’t want to die in a hospital room, so she came home to hospice when nothing more could be done. My sister flew in from Philadelphia and I drove in from Kansas City. I was only an hour away, so I just drove in every morning to be with my mother and went home each night to be with my family.
I’ve always found solace in driving back to my home town. For the most part it was a beautiful drive through rural Missouri – the place where I had grown up, where life had been simple and innocent and pure, a place I had never forgotten. Any other summer I would have looked forward to the cold comfort of my mother’s iced tea, the flicker of fireflies in the yard, and the cadence of cicadas in the trees. Now they were simply ghosts of July.
Hospice didn’t last very long, but then again, I suppose it’s not supposed to. My mother quickly fell into a coma and died a few days later. I would talk to her as she lay comatose, telling her l loved her every chance I got. I rarely told her that when she was alive, but mostly because it’s just one of those things I was never very good at. I often swore to myself that the next time I would try harder. There’s always tomorrow, I’d say. Well, there is, I learned, until there isn’t.
Wednesday, August 1, 2018
When Hope Is All You Have
I have incurable cancer. However, I prefer to think of it as a
chronic illness, as does my oncologist. I can’t thank her enough for
setting my head straight on this right out of the gate. A cancer
diagnosis is never pretty, regardless of the stage or type. It’s still
cancer and it’s scary as hell.
My initial diagnosis was stage 4 metastatic prostate cancer. That meant treatment would be systemic, so I wouldn’t have to go through prostate surgery. If there was any good news, that was it. Yeah, chemo was the good news. I can find a silver lining in anything.
Unlike most cancer patients, I never had the “you have cancer” moment. I simply wasn’t feeling well, had some labwork done, and a few days later learned my PSA was incredibly elevated (5,306). At that point, advanced prostate cancer was more or less a given, and a prostate biopsy would soon confirm it. 14 out of 14 cores were a Gleason 9 or 10, giving me an overall Gleason score of 9 (5+4). Having an advanced prostate cancer diagnosis meant we’d have to go straight into treatment before I really had a chance to absorb the diagnosis.
My oncologist and I mutually agreed not to talk prognosis. My case was not terminal (as in “you’ve got three months to live”), so we wanted to focus solely on treatment from day one. As I would soon discover, it’s imparetive to save all your energy - physical and mental - for the treatment to come. The toxicity of chemotherapy can vary, but experiencing some side effects is pretty much guaranteed. My cancer was advanced and agressive, so chemo was the best shot at getting it under control.
A driving force behind prognosis is statistics. Survival statistics deal with aggregate numbers and group trends, not individuals. Every person and every cancer is different. I was a living, breathing human being, not a point on a trendline, and I wanted to keep it that way. Nor did I want to go down the path to self-fulfilling prophecy. All I needed to know about five year survival rates was that there was a curve and then a really long tail. Call me an optimist, but an outsider on the end of that tail was the only place I wanted to be.
A quick warning, because I learned this the hard way. If you ever decide to search the Internet for your type and stage of cancer, you will invariably get the spoiler of all spoilers whether you want it or not. It’s out there and almost impossible not to see, so consider yourself warned. However, I found gaining knowledge of my disease very empowering, as it gave me the ability to ask my doctors questions, which in turn gave me some sense of control over my treatment.
Another important thing I learned, and trust me on this, your oncologist will become the single most important person in your life. If your oncologist is not, then you’ve got the wrong oncologist. I can’t stress this enough. Same goes for your entire medical team, and I do hope you're lucky enough to have one. From the very start it’s been a group effort involving me, my GP and his nurse, my urologist, my oncologist and her nurse, and an onco-psychologist. You may see these people more than you see your family, but unlike your family, you do have some say in choosing your medical team. Choose wisely, you won’t regret it.
One thing I won’t do is use words like fighter, or warrior, or survivor. It’s perfectly fine if it helps you by identifying with any of those terms. If that’s the case, then I absolutely encourage you do so. But for me, I prefer simply to say that I’m “living with cancer,” because that’s exactly what I’m doing. I’ll be living with cancer for the rest of my life, and that’s just the reality of the matter. The inescapable fact is that one day, I will die with cancer, or die from it.
One word I won’t hesitate using is “hope.” To quote New York Times bestselling author Karen White from her novel The Time Between:
Published elsewhere:
https://themighty.com/2018/07/stage-4-prostate-cancer-hope/
https://medium.com/@cancer_living/when-all-you-have-is-hope-1a32aecf8f6b
My initial diagnosis was stage 4 metastatic prostate cancer. That meant treatment would be systemic, so I wouldn’t have to go through prostate surgery. If there was any good news, that was it. Yeah, chemo was the good news. I can find a silver lining in anything.
Unlike most cancer patients, I never had the “you have cancer” moment. I simply wasn’t feeling well, had some labwork done, and a few days later learned my PSA was incredibly elevated (5,306). At that point, advanced prostate cancer was more or less a given, and a prostate biopsy would soon confirm it. 14 out of 14 cores were a Gleason 9 or 10, giving me an overall Gleason score of 9 (5+4). Having an advanced prostate cancer diagnosis meant we’d have to go straight into treatment before I really had a chance to absorb the diagnosis.
My oncologist and I mutually agreed not to talk prognosis. My case was not terminal (as in “you’ve got three months to live”), so we wanted to focus solely on treatment from day one. As I would soon discover, it’s imparetive to save all your energy - physical and mental - for the treatment to come. The toxicity of chemotherapy can vary, but experiencing some side effects is pretty much guaranteed. My cancer was advanced and agressive, so chemo was the best shot at getting it under control.
A driving force behind prognosis is statistics. Survival statistics deal with aggregate numbers and group trends, not individuals. Every person and every cancer is different. I was a living, breathing human being, not a point on a trendline, and I wanted to keep it that way. Nor did I want to go down the path to self-fulfilling prophecy. All I needed to know about five year survival rates was that there was a curve and then a really long tail. Call me an optimist, but an outsider on the end of that tail was the only place I wanted to be.
A quick warning, because I learned this the hard way. If you ever decide to search the Internet for your type and stage of cancer, you will invariably get the spoiler of all spoilers whether you want it or not. It’s out there and almost impossible not to see, so consider yourself warned. However, I found gaining knowledge of my disease very empowering, as it gave me the ability to ask my doctors questions, which in turn gave me some sense of control over my treatment.
Another important thing I learned, and trust me on this, your oncologist will become the single most important person in your life. If your oncologist is not, then you’ve got the wrong oncologist. I can’t stress this enough. Same goes for your entire medical team, and I do hope you're lucky enough to have one. From the very start it’s been a group effort involving me, my GP and his nurse, my urologist, my oncologist and her nurse, and an onco-psychologist. You may see these people more than you see your family, but unlike your family, you do have some say in choosing your medical team. Choose wisely, you won’t regret it.
One thing I won’t do is use words like fighter, or warrior, or survivor. It’s perfectly fine if it helps you by identifying with any of those terms. If that’s the case, then I absolutely encourage you do so. But for me, I prefer simply to say that I’m “living with cancer,” because that’s exactly what I’m doing. I’ll be living with cancer for the rest of my life, and that’s just the reality of the matter. The inescapable fact is that one day, I will die with cancer, or die from it.
One word I won’t hesitate using is “hope.” To quote New York Times bestselling author Karen White from her novel The Time Between:
"Sometimes hope is all we have, and to lose that is to lose all."
Published elsewhere:
https://themighty.com/2018/07/stage-4-prostate-cancer-hope/
https://medium.com/@cancer_living/when-all-you-have-is-hope-1a32aecf8f6b
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