It's been a shamefully long time since I've posted any content here. I've been busy with my writing over at Livejournal, and apparently I only have so much creative force within me at once. ;) I went on vacation, and when I got back went straight into tech week for the show I was producing; had a two-week run, wrapped and struck on Sunday 6/13 and began rehearsals for my next show on Monday 6/14. My energy levels are limited, although they are getting better, so I find myself really having to pay attention to what's on the to-do list and to prioritize what HAS to be done versus what I'd like to get done. It's frustrating, but I just hope things continue to get better. I think about where I was a year ago, and I can see the improvement. It's just not as fast as I'd like.
A year ago, I was less than two weeks out of surgery for the cancer. I couldn't sit up for more than 20-30 minutes at a time, for the most part. I slept on the sofa because walking down the hall to the bedroom was too much for me. I was having horrific tetany symptoms, because my parathyroid wasn't working but the doctors kept trying to wean me off the calcium/vit D regimen. It was good times.
3 weeks out from the surgery was the wedding of a very good friend of mine. I wasn't cleared to drive and wouldn't have had the stamina anyway, and a dear friend gave up his entire weekend to drive me to CT for the wedding, stay overnight so I could rest, and stop for a few hours at a family party on the way home. Through the whole weekend he was at my side, ready with a steadying hand or a smile, and he will never, ever know how much that meant to me. I've tried to tell him, but there really aren't words for it.
4 weeks out of surgery I bought my first home. I was completely taken advantage of on a couple of different issues, but I'm trusting in the Universe to help me find a resolution.
8 weeks out of surgery, terrified that permanent damage had been done to my vocal chords and singing ability, I agreed to be a minstrel in the summer Shakespeare. I made it through, and except for one night I botched a whistle reel because I was in too much pain to concentrate, I think no one could really tell I was sick. Of course, that same friend who took me to the wedding was also a minstrel, and now he will say things like "Don't you remember last year at Shakespeare when X happened?" and I have to remind him that I mostly spent the entire run telling myself "don't pass out, don't pass out, don't pass out, whatever you do."
And then, of course, another 4 weeks or so after that I began the radiation treatments. Those wiped me out almost as much as the surgery had - I spent my isolation week laying on the sofa and when I felt up to it I would prop myself up with pillows and read Harry Potter books. I reread the entire 7 book series in that week. It's not clear whether I'll have to have more radiation. I have a nuclear scan scheduled for the fall, when I will be given a small dose of radiation (about 1/50th of what I was given in treatment) and then be somewhat isolated (I haven't gotten the procedures yet; I think I just have to stay away from kids and pregnant women) for a few days and return for an imaging study which will show if anything that was left has grown since last year. I had a similar scan done after the initial radiation treatment, and it was not fun. Plus I have to do the low-iodine prep diet for 3 weeks with it, which means no seafood, no dairy, no processed foods, nothing with red dye in it, blah blah blah. The worst part? No sushi from now until after the scan. =(
But, I'm alive and my prognosis continues to be "excellent." I may be frustrated by my lack of energy, but I'm doing better than a lot of people with cancer. And for that, I am grateful. Even if all I did in this post, mostly, was kvetch.
But as the day of the Summer Solstice draws to a close, I wanted to take a look back at what has been an incredibly difficult, amazing, humbling, moving, insane year.
And to thank the Universe and the Spirit for giving me another year. I promise to make the most of it.
Showing posts with label cancer. Show all posts
Showing posts with label cancer. Show all posts
Monday, June 21, 2010
Wednesday, March 3, 2010
Rainy Days and Wednesdays Always Get Me Down
Today, I'm having a Day. One of those Days where a million little things (and sometimes big things) go wrong, and you spend your time wishing you could have just stayed in bed and avoided it all. But, like 99% of the world, I couldn't go back to bed after the day showed its true colors. The car we just spent $680 fixing (last week) is driving worse than when we took it to the mechanic. The dryer that's been broken for a week is going to cost "more than the original estimate." The roof is leaking. The basement is wet. I made my lunch but left it on the kitchen counter. There's no coffee at the office. I got pulled over by a state trooper for "not moving into the left lane to pass an emergency vehicle in the breakdown lane" and only avoided a ticket by explaining that it would have been suicidal to pull into the left lane on a busy NorthEast highway when the car's check engine light is blinking and I can't get the car to do above 60MPH. I bought a bag of jelly beans to have as an afternoon sugar rush for the rest of the week, and left it at the house.
So here I sit - no coffee, no lunch, (no breakfast either, because I was rushing and thought, "well, I can eat my lunch a little early"), no candy and a caffeine withdrawl headache the size of Missouri. I send a TXT to a couple friends that says "this is not my day" and everyone agrees. Everyone's had a Day.
Why is that? It's not a full moon. Mercury's not in retrograde. There's no other phenomenal cosmic forces swirling around us, as far as I can tell. It's just an average March day, cold and wet with a north wind driving snow and frozen rain inside jackets and through scarves, sending dry leaves and sand scudding across the pavement. So why has everything gone catawampus?
A question like that could send you downspiralling after too much contemplation. So, I try to clear the cobwebs from my head and correct my perspective.
Nobody I love died today, or was seriously injured. People may be sick, perhaps dying - but not today. Things may be broken, and expensive to fix, but so far we're managing. The roof and basement may be letting water in where they shouldn't, but it's a home of our own, and we're making the mortgage payments on time, at least for now. I may go hungry today, and have a caffeine headache that's only slightly smaller than Missouri, but that 's just for today. We have food to eat and clean water and a host of other things that millions of people in this world are lacking. I may get aggravated by my job, but I'm working. We're doing all right.
Sometimes I think we all feel like bad days are punishments from above. One thing after another goes wrong until we lift our faces to the sky and shout "What more? What else are you going to throw at me?" But maybe that's not the right attitude at all.
Maybe, these days come to us to underscore how lucky we are when things go right. How lucky we continue to be even when things go wrong. When everything works the way it should and we have a great day, maybe we take it a little too much for granted.
So I am embracing today's message. No, my life is not what I would want it to be. Yes, I will always have unfulfilled dreams and hopes and wants. No, that does not mean my life sucks.
I thought after being diagnosed with cancer, it would be easier somehow to deal with all these petty problems. I thought I'd have some incredible epiphany that would elevate me above the small problems. But a year into my diagnosis and treatment, I still struggle with the day to day nonsense. A lot of the time it feels like I struggle even more than I used to - it's hard to have patience for the little things when so many big things are wrong in your life. I was always the person who soldiered on and got it done, regardless of how I felt or anything that was going on. To be suddenly faced with being physically unable to soldier on was a sobering, humbling betrayal of the personal strength I'd always prided myself on. Pride goes before the fall, as they say.
So, I struggle along like everyone else, trying to find reason and meaning in the midst of chaos. I try to find the positive spin as much as I can. I remind myself again that perhaps this is the Universe's way of reminding me to be grateful that my cancer is treatable, grateful for my spouse, family, friends - to be grateful for the things I have instead of lamenting what I lack.
Maybe the Universe really is out to kick us when we're down. But if that's true, there's nothing we can do about it... and really, by focusing on the positive spin, at least my headache's diminishing.
Or maybe that's just the Diet Coke kicking in.
So here I sit - no coffee, no lunch, (no breakfast either, because I was rushing and thought, "well, I can eat my lunch a little early"), no candy and a caffeine withdrawl headache the size of Missouri. I send a TXT to a couple friends that says "this is not my day" and everyone agrees. Everyone's had a Day.
Why is that? It's not a full moon. Mercury's not in retrograde. There's no other phenomenal cosmic forces swirling around us, as far as I can tell. It's just an average March day, cold and wet with a north wind driving snow and frozen rain inside jackets and through scarves, sending dry leaves and sand scudding across the pavement. So why has everything gone catawampus?
A question like that could send you downspiralling after too much contemplation. So, I try to clear the cobwebs from my head and correct my perspective.
Nobody I love died today, or was seriously injured. People may be sick, perhaps dying - but not today. Things may be broken, and expensive to fix, but so far we're managing. The roof and basement may be letting water in where they shouldn't, but it's a home of our own, and we're making the mortgage payments on time, at least for now. I may go hungry today, and have a caffeine headache that's only slightly smaller than Missouri, but that 's just for today. We have food to eat and clean water and a host of other things that millions of people in this world are lacking. I may get aggravated by my job, but I'm working. We're doing all right.
Sometimes I think we all feel like bad days are punishments from above. One thing after another goes wrong until we lift our faces to the sky and shout "What more? What else are you going to throw at me?" But maybe that's not the right attitude at all.
Maybe, these days come to us to underscore how lucky we are when things go right. How lucky we continue to be even when things go wrong. When everything works the way it should and we have a great day, maybe we take it a little too much for granted.
So I am embracing today's message. No, my life is not what I would want it to be. Yes, I will always have unfulfilled dreams and hopes and wants. No, that does not mean my life sucks.
I thought after being diagnosed with cancer, it would be easier somehow to deal with all these petty problems. I thought I'd have some incredible epiphany that would elevate me above the small problems. But a year into my diagnosis and treatment, I still struggle with the day to day nonsense. A lot of the time it feels like I struggle even more than I used to - it's hard to have patience for the little things when so many big things are wrong in your life. I was always the person who soldiered on and got it done, regardless of how I felt or anything that was going on. To be suddenly faced with being physically unable to soldier on was a sobering, humbling betrayal of the personal strength I'd always prided myself on. Pride goes before the fall, as they say.
So, I struggle along like everyone else, trying to find reason and meaning in the midst of chaos. I try to find the positive spin as much as I can. I remind myself again that perhaps this is the Universe's way of reminding me to be grateful that my cancer is treatable, grateful for my spouse, family, friends - to be grateful for the things I have instead of lamenting what I lack.
Maybe the Universe really is out to kick us when we're down. But if that's true, there's nothing we can do about it... and really, by focusing on the positive spin, at least my headache's diminishing.
Or maybe that's just the Diet Coke kicking in.
Monday, February 8, 2010
Music, a magic beyond all we do here....
JK Rowling, author of the phenomenally popular Harry Potter books, has Hogwarts Headmaster Albus Dumbledore speaking those words in the first book of the mega-watt series. A worthy sentiment that is subsequently completely ignored, as music plays virtually no part in the books or the plotline. Small snippets are included in the movies (which, as any Potter fan is happy to explain at length, do deviate from the books in some rather conspicuous ways), but any music heard directly by the characters (I am excluding, for the moment, the movie scores) is incidental. As a musician, that made me a little sad, but I can't really call JKR out on it. After all, she got millions of people to read, among generations that would not have picked up a book they weren't forced to. She can't solve all the world's problems. (But, perhaps in her next series... hint, hint)
Accepted treatment protocols for my type of cancer involve ingesting radioactive isotopes that ablate (kill) the cancerous cells from the inside-out. However, the treatment leaves the patient radioactive for several months, and for the first 7 days, I had to be in isolation from anyone. Anything I used had to be segregated, and what couldn't be thoroughly rinsed down (ie, books) had to be kept separate for 3 months before others could handle them again. In an effort to keep myself sane (one can only watch so much mindless TV), I decided to re-read the Harry Potter series, in order. It took me almost the entire week to finish, which allowed me to simply put those books in a lined bag and leave them at the back of the closet until January. I hadn't read the books since the final one had been published, and I was reminded again of all the wonderful details of Ms. Rowlings' imagination had to be chopped in the interests of the movies. If your only experience with the Potter-verse is the movies, I strongly encourage you to take the time to READ THE BOOKS. This is not a slam against the movies, which I think are quite well done; it's simply that the books are better. In the history of movies-from-books, I challenge anyone to find a movie that is better than its original source book. In recent memory, the closest example I can come up with is The Color Purple, which I would classify "as good as" the original novel. Even then, it lost some things in translation to the silver screen.
But I started talking about music. As I metioned in my "tweet" last night, I had the good fortune of being 1 of only 5 musicians at the local seisun. This was due, I'm sure, to the Superbowl, but since I am not a football fan, I couldn't have been less interested in "the big game." I only learned who was even playing from talking to people at the pub last night. (But when spring training starts, I warn you, there may be more baseball-related blogs than I originally intended.)
So there I was, in a room with 4 other musicians who were, in no particular order, 3 recording artists (one a former Grammy nominee) and a singer from Ireland who has a wealth of traditional old sean nos songs that the Smithsonian archives would envy. And me. And maybe a dozen or so audience members (again, the Superbowl was on). Normally all those numbers are at least doubled, and it's not as intimidating to participate because there's a wider range of experience and talent. It was only marginally easier for me that I was a "regular" at the seisun before my treatments began, and had gotten very positive feedback from audience and other regulars; also the fact that two of the "professional" musicians have known me since I was a child allowed the butterflies to ease somewhat. Still, rather humbling to be in such phenomenal company. Also humbling to know that I held my own in the song swapping. To have a Grammy-nominated musician (who is, quite honestly, one of the most incredibly talented people I've ever had the pleasure of listening to) ask the origins of the songs I did, and ask me to come back more frequently, was amazing.
As I was undergoing surgery and treatment this summer, I began re-evaluating my priorities. I think it's something anyone with a potentially terminal illness does in varying degrees. I thought about my writing (which I'd all but abandoned), music (which I had taken up again about 18 months previously), art (again, mostly abandoned) and theatre (which I had also begun to do again, with a local community theatre). I thought about what I wanted my life to be, and how to blend that better with the life my circumstances require me to live. This blog, and another (work-related) blog, along with a few more tendrils of artistic endeavor, have been born out of those musings.
So I hope that you'll join me on this journey of self-discovery. Re-evaluate your own priorities. Shape your own future a little better. And most importantly, in the words of Patrick Dennis (quoting his "Auntie Mame"), "Live, live, live! Life is a banquet, and most poor suckers are starving to death!"
Accepted treatment protocols for my type of cancer involve ingesting radioactive isotopes that ablate (kill) the cancerous cells from the inside-out. However, the treatment leaves the patient radioactive for several months, and for the first 7 days, I had to be in isolation from anyone. Anything I used had to be segregated, and what couldn't be thoroughly rinsed down (ie, books) had to be kept separate for 3 months before others could handle them again. In an effort to keep myself sane (one can only watch so much mindless TV), I decided to re-read the Harry Potter series, in order. It took me almost the entire week to finish, which allowed me to simply put those books in a lined bag and leave them at the back of the closet until January. I hadn't read the books since the final one had been published, and I was reminded again of all the wonderful details of Ms. Rowlings' imagination had to be chopped in the interests of the movies. If your only experience with the Potter-verse is the movies, I strongly encourage you to take the time to READ THE BOOKS. This is not a slam against the movies, which I think are quite well done; it's simply that the books are better. In the history of movies-from-books, I challenge anyone to find a movie that is better than its original source book. In recent memory, the closest example I can come up with is The Color Purple, which I would classify "as good as" the original novel. Even then, it lost some things in translation to the silver screen.
But I started talking about music. As I metioned in my "tweet" last night, I had the good fortune of being 1 of only 5 musicians at the local seisun. This was due, I'm sure, to the Superbowl, but since I am not a football fan, I couldn't have been less interested in "the big game." I only learned who was even playing from talking to people at the pub last night. (But when spring training starts, I warn you, there may be more baseball-related blogs than I originally intended.)
So there I was, in a room with 4 other musicians who were, in no particular order, 3 recording artists (one a former Grammy nominee) and a singer from Ireland who has a wealth of traditional old sean nos songs that the Smithsonian archives would envy. And me. And maybe a dozen or so audience members (again, the Superbowl was on). Normally all those numbers are at least doubled, and it's not as intimidating to participate because there's a wider range of experience and talent. It was only marginally easier for me that I was a "regular" at the seisun before my treatments began, and had gotten very positive feedback from audience and other regulars; also the fact that two of the "professional" musicians have known me since I was a child allowed the butterflies to ease somewhat. Still, rather humbling to be in such phenomenal company. Also humbling to know that I held my own in the song swapping. To have a Grammy-nominated musician (who is, quite honestly, one of the most incredibly talented people I've ever had the pleasure of listening to) ask the origins of the songs I did, and ask me to come back more frequently, was amazing.
As I was undergoing surgery and treatment this summer, I began re-evaluating my priorities. I think it's something anyone with a potentially terminal illness does in varying degrees. I thought about my writing (which I'd all but abandoned), music (which I had taken up again about 18 months previously), art (again, mostly abandoned) and theatre (which I had also begun to do again, with a local community theatre). I thought about what I wanted my life to be, and how to blend that better with the life my circumstances require me to live. This blog, and another (work-related) blog, along with a few more tendrils of artistic endeavor, have been born out of those musings.
So I hope that you'll join me on this journey of self-discovery. Re-evaluate your own priorities. Shape your own future a little better. And most importantly, in the words of Patrick Dennis (quoting his "Auntie Mame"), "Live, live, live! Life is a banquet, and most poor suckers are starving to death!"
Subscribe to:
Posts (Atom)
