I'm an unabashed fan of the Rocky movies.* I always have been. In fact, one of my go-to cocktail party stories the last few years is the true story of how I was cast as an extra in the last Rocky film, and missed out on the opportunity because I didn't lie to my then-boss. In that movie, Rocky gets back into boxing because of what he describes as some "stuff in the basement." Enduring grief from a life event that he hasn't finished processing or getting out of his system. I can relate.
Most of the time, my dad's absence is a nagging fact I simply live with. I know he's gone, but as I move through each day, meeting my various obligations and challenges, it's not something that slows me down. But every so often I get the feeling that I have my own stuff in the basement. This week it all came roaring back. Twice.
Friday night I had some too rare one-on-one time with my kindergartner, our middle child. We went to the movies and had a great time. We were laughing all the way home in the car until out of nowhere he told me about a dream he had had a few times, where my dad is talking to him, but then he disappears and won't come back no matter how much my son asks him to. He told me he cries in the dream. In seconds he was crying hard.
Every parent sees their kids cry all the time in the early years. It's a routine event. But seeing your child cry from real, unsolvable grief is totally different, and it hit me viscerally. I tried to take his pain away, to comfort him any way I could think of, but he was really too sad to reach, and naturally his grief brought up my own feelings of loss that had long been sitting in the basement. The hardest part was knowing that the best I'd be able to do would be to help my son deal with the grief, because there would be no way to remove its cause.
As part of being Grandma, my mom has a second role for my kids as their connection to my dad. Every once in a while when my older two, who actually knew him, feel sad about his absence, talking to her has made them feel better. Thankfully that worked late last Friday, too. But before we got on the phone, I let slip a secret that I hoped would calm things down, and instead brought us all a second bout of sadness a couple of nights later.
I told my son about a special story book my dad recorded his voice over about a month before he died. By that time the writing was on the wall and my wife wanted my daughter, who at the time was only ten weeks old, to have some lasting piece of my dad. She knew the two might meet only once, and she had the foresight and the heart to buy the recordable book and ask him to read it, so my daughter would at least have that. Recording that book with my dad as he lay in bed wearing an oxygen tube in his nose, less than two weeks before the shit completely hit the fan, was a gut-wrenching experience. It was clear to us both that he wasn't doing it just because we lived in different states, and we wanted our baby to have his voice between visits.
When we got back from that visit I stashed the recorded book in a hiding place, and for the next two and a half years I felt like a character in an Edgar Allen Poe story. I was always painfully aware of where the book was. I could sense the damn thing when I got near it. Once when I was alone in my house I allowed myself to take it out and listen. Mistake. After a few minutes it was hidden again. That was at least a year ago. One thing my middle guy has in reserve is enough perseverance to nearly always get what he's after. I hoped he would forget about the book, but once he knew about it, he HAD to hear it. By Monday night I caved.
I tried to explain to the princess what she was about to hear, but being two and a half, she didn't process it, and continued happily playing. I tried harder to prepare my boys for the feeling of hearing Papa's voice again. I tried hardest to steel myself, because though I know it's OK to cry in front of them (according to one grief counselor anyway), it would be really unsettling for them to see me in that state. I didn't want to upset them more than necessary. It went about as well as I thought it would. Within a couple of pages we were all in tears, and only Mr. Middle wanted to go on, which I allowed. It was not only tough hearing his voice, but it was tough hearing just how sick he really was by then. His voice is weak and his breathing is labored. It is also clear how unbearably sad he was as he spoke to his only granddaughter - a precious baby whom he knew he wouldn't see grow up. It also conjured for me a flashback to that room, that visit, which was not my last time with my dad, but was the last time I'd see him in his own home, under his own power.
The book is safely put away in a new hiding place for a while. When my daughter is old enough to understand but still young enough to appreciate having a story read to her, I intend to try again. But for the moment, it is still too hard to listen to it. Though I can't rule out one of her brothers asking for the book again and maybe again after that. I would let him, but it would be difficult. When he gets thinking about it, the poor boy really misses his Papa.
The farther into the past my dad's death, and particularly his end-stage illness, recedes, the more I come to understand that grief of this magnitude ebbs and flows. Sometimes when I haven't felt it for a while, I wonder if I am an insensitive robot who can't love people. Then I tell myself I'm growing past a traumatic experience, and nobody could bear a constantly high level of grief. The past few days showed me I'm not a robot, I'm just grieving at my own pace. And so are my children.
To bring this back to Rocky, it turns out that Bill Conti, the composer of the unforgettable "Gonna Fly Now" was a high school classmate of my dad's. I don't know if he knew this, and we never once talked about it, but it's true. If you stuck with me through this long post, here is a nice video clip I hope you like.
*Except for Rocky V, which never happened.
Showing posts with label cancer. Show all posts
Showing posts with label cancer. Show all posts
Wednesday, October 10, 2012
Wednesday, October 26, 2011
Unfinished Business
In the scheme of things, this bit of unfinished business is more like an itch that was never satisfactorily scratched. We all leave much bigger things undone, but this frustration is nonetheless quite real.
Older readers will remember that magical time before video on-demand, Netflix, and even DVDs, when VCRs were first becoming available. My parents, I'm sure driven my my dad being ever the early adapter in all things technology, brought home our first VCR in the late 1970s. My mom told me that a single recordable blank VHS tape cost about $30 at the time. Think about that. And of course, Blockbuster didn't exist yet.
My parents went out one night and left the new machine (a version of which we've seen at the Smithsonian, by the way) recording an old Frank Sinatra movie called The Man With the Golden Arm, not to be confused with a similarly titled James Bond movie. When they went to watch it, the ending had been cut off for some reason. For a lot of my childhood, the elusive ending of this movie was a sort of cultural holy grail for my parents. Silly, yes, and they acknowledged as much. But it was a tiny enduring frustration that they never knew how it ended.
In the last few weeks of my dad's life, I was both grasping for anything at all that might give him more time, and I was trying to help make what I knew must be his last weeks and days better somehow for him and for myself. One of my favorite things about living in this time is the on-demand nature of just about everything. I am old enough to remember the small thrill of catching a favorite movie on TV, when that was my only shot at seeing it, or lying in wait with my tape recorder for a particular song to be played on the radio. Now we can pull most anything seemingly out of thin air. So in those last weeks I tried to order my dad a DVD of The Man With the Golden Arm. And when I told my wife about this ultimately futile effort to close out a tiny thing for my dad, she reminded me that I actually bought my parents the DVD years before. Wait for it...
The version I got them had an alternate ending! Crap-o-rama.
Older readers will remember that magical time before video on-demand, Netflix, and even DVDs, when VCRs were first becoming available. My parents, I'm sure driven my my dad being ever the early adapter in all things technology, brought home our first VCR in the late 1970s. My mom told me that a single recordable blank VHS tape cost about $30 at the time. Think about that. And of course, Blockbuster didn't exist yet.
My parents went out one night and left the new machine (a version of which we've seen at the Smithsonian, by the way) recording an old Frank Sinatra movie called The Man With the Golden Arm, not to be confused with a similarly titled James Bond movie. When they went to watch it, the ending had been cut off for some reason. For a lot of my childhood, the elusive ending of this movie was a sort of cultural holy grail for my parents. Silly, yes, and they acknowledged as much. But it was a tiny enduring frustration that they never knew how it ended.
In the last few weeks of my dad's life, I was both grasping for anything at all that might give him more time, and I was trying to help make what I knew must be his last weeks and days better somehow for him and for myself. One of my favorite things about living in this time is the on-demand nature of just about everything. I am old enough to remember the small thrill of catching a favorite movie on TV, when that was my only shot at seeing it, or lying in wait with my tape recorder for a particular song to be played on the radio. Now we can pull most anything seemingly out of thin air. So in those last weeks I tried to order my dad a DVD of The Man With the Golden Arm. And when I told my wife about this ultimately futile effort to close out a tiny thing for my dad, she reminded me that I actually bought my parents the DVD years before. Wait for it...
The version I got them had an alternate ending! Crap-o-rama.
Wednesday, June 8, 2011
Alice's Bucket List
Yesterday I discovered Alice's Bucket List, the new blog by a 15-year-old girl in the UK who knows she is going to die very young from a cancer she's been fighting since she was 11. She's got two posts so far, and one of them is her bucket list. Imagine being that young and knowing it was time to think about what experiences you want to cram in before you get very very ill and die. Imagine being the parent of a kid in this situation. It's too much to even try to process.
I have said before that while losing my dad has been awful, I don't regard it as a tragedy. The story of Alice is a tragedy of the highest order.
Her list is sweet and simple, and much of it seems within her grasp. Most heart-breaking are the few items she acknowledges it's already too late for her to ever have or do. My first thought on reading the list - and yours will be, too - was to think about whether I could have anything to do with helping Alice get anything on the list. It's not likely, because she lives in the UK, and it really isn't that kind of list. But one thing she is asking is that everyone sign up to become a bone marrow donor.
I'll be honest, I'm not sure I have the nerve. But part of that is because there is so much blather out there about the process of donating bone marrow. So I've decided that if nothing else, I will learn as much as I can about it, and I hope you will, too. It may not be for me, it may not be for you, but we owe it to Alice to at least find out for sure. Here are FAQs about the whole process from the National Marrow Donor Program.
I have said before that while losing my dad has been awful, I don't regard it as a tragedy. The story of Alice is a tragedy of the highest order.
Her list is sweet and simple, and much of it seems within her grasp. Most heart-breaking are the few items she acknowledges it's already too late for her to ever have or do. My first thought on reading the list - and yours will be, too - was to think about whether I could have anything to do with helping Alice get anything on the list. It's not likely, because she lives in the UK, and it really isn't that kind of list. But one thing she is asking is that everyone sign up to become a bone marrow donor.
I'll be honest, I'm not sure I have the nerve. But part of that is because there is so much blather out there about the process of donating bone marrow. So I've decided that if nothing else, I will learn as much as I can about it, and I hope you will, too. It may not be for me, it may not be for you, but we owe it to Alice to at least find out for sure. Here are FAQs about the whole process from the National Marrow Donor Program.
Wednesday, February 9, 2011
The Grey's Anatomy Effect
About four weeks after the last scan, when my dad was in the hospital for the first overnight stay in his four-plus years as a cancer patient, when it was abundantly clear that the chemo hadn't been working for a while, and that the cancer was spreading fast, it finally landed on me.
No, it didn't.
My dad was in bad shape, but he was still alive, dammit. And if someone is alive, then hope springs eternal.
Except that often, it doesn't.
His oncologist, whom we liked and trusted, tried to tell me, but I needed to be hit over the head. Hit me over the head, he did. His exact words still ring in my ears some eight months later, "The chance that your dad will respond meaningfully to any further treatment is zero." You'd think that would have done it. It didn't. I called in favors. I moved up appointments we had made at two brand-name cancer hospitals, and I was on the road toward getting him an experimental drug, even though the trials usually don't admit patients who have exhausted their traditional therapy options. If I could have arranged to wheel his hospital bed into an infusion suite to get that experimental drug into his body, I would have pushed the thing myself.
We opted for hospice care only when it was clear that his body was failing so completely that it was not physically possible to offer any further cancer treatment. That, and another doctor advised that further treatment could have hurt him, or ruined whatever time we had left.
So the big news yesterday that a major medical association was changing its guidelines to encourage physicians to be more candid about likely outcomes and options to help terminal patients plan for "a good death" was kind of a punch to my gut. It fed my need to wonder about whether I'd done the right things for my dad. But then again, my wife correctly pointed out that my family would not have gone quietly toward hospice any sooner than we did. Well, maybe we were wrong.
When someone you love dies you find a million ways to torture yourself. See all that stuff in the paragraph up there that I said I did? None of it stops me from wondering if I did enough, or if I could have done anything sooner or with more urgency. Partly this is a normal reaction. Partly it is because of what I call the Grey's Anatomy Effect, an overlooked cousin of the oft-reported CSI Effect.
Watch enough medical dramas on TV and you may become convinced that your loved one can be saved at the last minute by something risky, experimental, rare, or entirely dumb luck. Hell, maybe it was never cancer at all, but some previously unknown, but non-lethal disease. Unfortunately, this is almost never the case. But mix this bit of cultural conditioning with the normal feeling of not wanting to lose someone, and you can see why the doctor had to be so blunt.
Here's hoping that this new practice guideline in cancer care helps patients and their loved ones adjust and prepare for the inevitable, and do it with some peace of mind and physical comfort.
No, it didn't.
My dad was in bad shape, but he was still alive, dammit. And if someone is alive, then hope springs eternal.
Except that often, it doesn't.
His oncologist, whom we liked and trusted, tried to tell me, but I needed to be hit over the head. Hit me over the head, he did. His exact words still ring in my ears some eight months later, "The chance that your dad will respond meaningfully to any further treatment is zero." You'd think that would have done it. It didn't. I called in favors. I moved up appointments we had made at two brand-name cancer hospitals, and I was on the road toward getting him an experimental drug, even though the trials usually don't admit patients who have exhausted their traditional therapy options. If I could have arranged to wheel his hospital bed into an infusion suite to get that experimental drug into his body, I would have pushed the thing myself.
We opted for hospice care only when it was clear that his body was failing so completely that it was not physically possible to offer any further cancer treatment. That, and another doctor advised that further treatment could have hurt him, or ruined whatever time we had left.
So the big news yesterday that a major medical association was changing its guidelines to encourage physicians to be more candid about likely outcomes and options to help terminal patients plan for "a good death" was kind of a punch to my gut. It fed my need to wonder about whether I'd done the right things for my dad. But then again, my wife correctly pointed out that my family would not have gone quietly toward hospice any sooner than we did. Well, maybe we were wrong.
When someone you love dies you find a million ways to torture yourself. See all that stuff in the paragraph up there that I said I did? None of it stops me from wondering if I did enough, or if I could have done anything sooner or with more urgency. Partly this is a normal reaction. Partly it is because of what I call the Grey's Anatomy Effect, an overlooked cousin of the oft-reported CSI Effect.
Watch enough medical dramas on TV and you may become convinced that your loved one can be saved at the last minute by something risky, experimental, rare, or entirely dumb luck. Hell, maybe it was never cancer at all, but some previously unknown, but non-lethal disease. Unfortunately, this is almost never the case. But mix this bit of cultural conditioning with the normal feeling of not wanting to lose someone, and you can see why the doctor had to be so blunt.
Here's hoping that this new practice guideline in cancer care helps patients and their loved ones adjust and prepare for the inevitable, and do it with some peace of mind and physical comfort.
Subscribe to:
Posts (Atom)