It's Monday February 15th, 9:42 am
Good morning to all! I hope everyone enjoyed their weekend (and Valentine's Day). In lieu of starting my second round of chemo injections yesterday, I took the day off to watch some flicks and do a bit of reading. It was a weekend of mental weaving, racing, and erasing in some instances. More of that later, I'm sure.
I'm scheduled for another bone marrow biopsy this morning/afternoon. We're going to be able to see how the first round of chemo has done. Our fingers are crossed, but even at such an early stage we can't expect to see much. Also, I doubt I'll be home until my platelets stabilize for good. Results are results. Knowing is better than groping in the dark for the ceiling's drifting light string.
The platelets have been coming back at/around 16,000 in the morning, which usually bounces to around 30,000 after a transfusion. As long as we're above 10,000, I'm happy. My mom asked me what I'll do when they return to normal. I hadn't thought about it. Jumping jacks with razors wrapped in my hands? Testing fate and all. More likely than not, I'll take a shower and a walk. Then jumping jacks.
-Oh, and since it was Valentine's Day yesterday, and all is red and reminding me: Donate Blood. I hate to sound didactic, or altogether preachy, but I've used so much blood (platelets, really) that I'll never be able to replace it on my own. I need your help! I'm simply a concerned citizen that has had his hand in the Blood Bank's coffer for a while now. I'm not here to preach, just to throw it out there. Enough with the causes, it's not my thing to push an agenda.
A lot of reading this weekend. Nothing sustained like a novel, yet. I've been rooting through poems, stretching their words apart like maple syrup between fingers. Even to the microscopic level, I have the torsion maxed on the knobs. I am looking for the sparks behind the lens. They're there. Some days it looks like a purple lightning storm settling over the breathing Atlantic sea; others are fields of white wheat that sparkle like whiskey after cold Midwestern rain; others look like the crooked veins of streets, scabbed by crumbling curbs and soiled in spots of leaking oil. I am keeping my faith in these words, the people in my world, and the strength that all of this (and you!) has instilled in me.
Franz Kafka (who's book of aphorisms was majestically bestowed on me. Thank you, Mr. Brock and Dr. Bakken) wrote, "Like a path in autumn: no sooner is it cleared than it is once again littered with fallen leaves."
So here it is. The path, clear for a moment. The wind will still breathe, detaching stems and leaves against drifting air; but for today, it's clear. Time to proceed with strength, love and endurance.
All my love,
Chris
Monday, February 15, 2010
Saturday, February 13, 2010
Saturday Afternoon Insulin Shots
It's Saturday February 13th, 4:43 pm
Sausage Egg McMuffin with Cheese x2 and a Hashbrown. It doesn't get more processed than McDonald's breakfast, but by God did I enjoy it! There's something about congesting arteries in a hospital bed that feels so deviously fun. Thanks to my Uncle Fred for the food; he's been a huge help and a great source of conversation since coming to Pittsburgh.
Last night the doctors took a window of 28,000 platelets (gnarly) to insert a PICC line, which is a slightly more central port for my chemo and blood draws. Though not an unpleasant procedure, it involves running a tube through a vein in my arm to my neck. The process was weird, but nothing I can't live with. The advantage of having the PICC line allows them to draw blood from it rather than from my left arm. Looks like I'm going to lose my clout in the New York Underground heroine scene. You know what they say, "No tracks, no cred." So, here's to the left arm's slow, but exciting recovery! It should look less like a Civil War captain's gangrene leg and more like my dominant arm in no time! Huzzah!
The platelet battle still rages on, but we're collecting more ground as we can. Yesterday morning it was 12,000. Yesterday night: 28,000. This morning: 16,000. This evening (circa 4:00pm): 30,000. Awesome news to me. Each morning is a dip, only to find a bounce in the evening. It's like loosing the cusp of a balloon, only to breathe deeper for a greater charge. I can take that.
Some of the side effects of chemo (or the steroids, really) are beginning to show. My hair might be thinning, but also, it's pretty greasy right now. We'll see on that one. I've never had the courage shave my head, but we might find out! Patrick Stewart, anyone? The steroids have blurred my distant vision, but the prescribed glasses from over Christmas correct this (for the most part). That worked out well. There are also small issues with my blood-sugar levels, because of the 'roids. I'm practically a diabetic now. They are monitoring my blood-sugar and giving insulin shots. This will subside as my body molds to the treatment, though. None of these are permanent effects, but a nice walk through the world of people living with these afflictions. Trying on other's shoes, I suppose.
I hope everyone is enjoying their weekend. Get out there, get cold, get snowy, get drunk, get into trouble, but be safe for me. I need everyone around for when I get back. I have hugs and conversations, high fives and mental picking that I intend to do. So, keep well!
All my love,
Chris
Sausage Egg McMuffin with Cheese x2 and a Hashbrown. It doesn't get more processed than McDonald's breakfast, but by God did I enjoy it! There's something about congesting arteries in a hospital bed that feels so deviously fun. Thanks to my Uncle Fred for the food; he's been a huge help and a great source of conversation since coming to Pittsburgh.
Last night the doctors took a window of 28,000 platelets (gnarly) to insert a PICC line, which is a slightly more central port for my chemo and blood draws. Though not an unpleasant procedure, it involves running a tube through a vein in my arm to my neck. The process was weird, but nothing I can't live with. The advantage of having the PICC line allows them to draw blood from it rather than from my left arm. Looks like I'm going to lose my clout in the New York Underground heroine scene. You know what they say, "No tracks, no cred." So, here's to the left arm's slow, but exciting recovery! It should look less like a Civil War captain's gangrene leg and more like my dominant arm in no time! Huzzah!
The platelet battle still rages on, but we're collecting more ground as we can. Yesterday morning it was 12,000. Yesterday night: 28,000. This morning: 16,000. This evening (circa 4:00pm): 30,000. Awesome news to me. Each morning is a dip, only to find a bounce in the evening. It's like loosing the cusp of a balloon, only to breathe deeper for a greater charge. I can take that.
Some of the side effects of chemo (or the steroids, really) are beginning to show. My hair might be thinning, but also, it's pretty greasy right now. We'll see on that one. I've never had the courage shave my head, but we might find out! Patrick Stewart, anyone? The steroids have blurred my distant vision, but the prescribed glasses from over Christmas correct this (for the most part). That worked out well. There are also small issues with my blood-sugar levels, because of the 'roids. I'm practically a diabetic now. They are monitoring my blood-sugar and giving insulin shots. This will subside as my body molds to the treatment, though. None of these are permanent effects, but a nice walk through the world of people living with these afflictions. Trying on other's shoes, I suppose.
I hope everyone is enjoying their weekend. Get out there, get cold, get snowy, get drunk, get into trouble, but be safe for me. I need everyone around for when I get back. I have hugs and conversations, high fives and mental picking that I intend to do. So, keep well!
All my love,
Chris
Friday, February 12, 2010
City by the Lake
It's Friday Febraury 12, 9:12 am.
Preliminary thoughts: I'm sorry that I didn't write yesterday, but time drizzled from the clock faster than usual. The two nights prior didn't afford much sleep due to transfusions and blood draws. I can't complain for lack of sleep, it certainly makes the flood of doctor lingo more humorous.
Anyhow, we've got some updates! Let's start with the bones of the matter. I've been moved to another room! (UPMC Shady Side Room 710) This one is quite a bit larger and more accommodating to my ever-amassing pile of goodies. Being from out of town, it seems that my visitors come in groups rather than one by one, which has always been amazing for me, but previously uncomfortable for them. No longer! Chairs for all, I say! We seem to have plenty. It's encouraging to see them, knowing that there are beautiful people to fill their spaces.
Yesterday, we tried a new procedure to help with the platelet matter. It's called IVIG (Intravenous Immunoglobulin). I might have mentioned it. It's supposed to bolster my immune system in a big way, and in doing so will slow the decay (or destruction) of my platelets. Hmm, let's shoot for a for instance. For instance, I was getting platelets transfused in a big way for the last few days, but even when my platelets ascended beyond 10,000, they would drop rapidly (within a few hours) back to 5,000. After the IVIG and some quick moving platelets last night, they bumped to 15,000. After some sleep and a hearty breakfast of Honey Nut Cheerios, my platelets have only dropped to 12,000. This is pretty big, at least for me. It doesn't mean that my platelets aren't dropping, but not like before.
We'll see where this treatment goes, but we go on as usual: building our ground before we take our steps.
I was wheeled off from my room for a while; a nice break in the monotony of white sheets and re-run TV. I tried to take stock of everything: the carpet's burgundy blaze like tipped red wine from a dinner table; the fluorescent lights as they popped in a slow hiss of decay and degradation; the floral wallpaper's pastel smear (the same I've seen since birth in dentist's and doctor's offices, but altogether unique for me here). I could feel the right-hand pull from the gurney's gray and white wheels, like a crooked shopping cart that squiggles down each aisle, fighting your forearm's strain to keep it in line.
The point being, each of these lightning images took me miles from this hospital bed, these needles, tubes and tape. I wanted to run my fingers from the gurney to the fibers of the carpet, to feel if they were still wet from wine. I wanted that forearm sting, the tight struggle from black wheels grating against linoleum. Even the smallest inconveniences seem so vivid in my memory. They're the moments of outside life that I miss the most today, among others.
I'm not trying to suggest that everyone embrace the little inconveniences in life, because of their supposed beauty. That's ridiculous. I just know that my memory is what keeps me beyond these walls and the windows. I don't want to forget anything, most importantly the least important things. Don't forget the bending birch peppered in black birds, or the blinking lights of a wheezing city by the lake. I'll be back soon enough. Soon enough.
All my hope, love and patience,
Chris
***A Rapid and Triumphant Update***
My platelets have bounced up to 28,000 from their previous 12,000 this morning. This is another one of those victories. I'll be sucking the marrow (har har) from this success for a while. We are going to put a PICC line in tonight, which will give them a port for chemo and blood, without having to stick me with needles. Like I said, victory indeed. We aren't through this wood yet, but are pressing on through the braids of branches and vines until we find our next spot of camp. Thank you, everyone, thank you for keeping me in this fight. All paths eventually clear for a moment. This is ours, for now! Happy Friday, Happy Weekend!
All my deepest love,
Chris
Preliminary thoughts: I'm sorry that I didn't write yesterday, but time drizzled from the clock faster than usual. The two nights prior didn't afford much sleep due to transfusions and blood draws. I can't complain for lack of sleep, it certainly makes the flood of doctor lingo more humorous.
Anyhow, we've got some updates! Let's start with the bones of the matter. I've been moved to another room! (UPMC Shady Side Room 710) This one is quite a bit larger and more accommodating to my ever-amassing pile of goodies. Being from out of town, it seems that my visitors come in groups rather than one by one, which has always been amazing for me, but previously uncomfortable for them. No longer! Chairs for all, I say! We seem to have plenty. It's encouraging to see them, knowing that there are beautiful people to fill their spaces.
Yesterday, we tried a new procedure to help with the platelet matter. It's called IVIG (Intravenous Immunoglobulin). I might have mentioned it. It's supposed to bolster my immune system in a big way, and in doing so will slow the decay (or destruction) of my platelets. Hmm, let's shoot for a for instance. For instance, I was getting platelets transfused in a big way for the last few days, but even when my platelets ascended beyond 10,000, they would drop rapidly (within a few hours) back to 5,000. After the IVIG and some quick moving platelets last night, they bumped to 15,000. After some sleep and a hearty breakfast of Honey Nut Cheerios, my platelets have only dropped to 12,000. This is pretty big, at least for me. It doesn't mean that my platelets aren't dropping, but not like before.
We'll see where this treatment goes, but we go on as usual: building our ground before we take our steps.
I was wheeled off from my room for a while; a nice break in the monotony of white sheets and re-run TV. I tried to take stock of everything: the carpet's burgundy blaze like tipped red wine from a dinner table; the fluorescent lights as they popped in a slow hiss of decay and degradation; the floral wallpaper's pastel smear (the same I've seen since birth in dentist's and doctor's offices, but altogether unique for me here). I could feel the right-hand pull from the gurney's gray and white wheels, like a crooked shopping cart that squiggles down each aisle, fighting your forearm's strain to keep it in line.
The point being, each of these lightning images took me miles from this hospital bed, these needles, tubes and tape. I wanted to run my fingers from the gurney to the fibers of the carpet, to feel if they were still wet from wine. I wanted that forearm sting, the tight struggle from black wheels grating against linoleum. Even the smallest inconveniences seem so vivid in my memory. They're the moments of outside life that I miss the most today, among others.
I'm not trying to suggest that everyone embrace the little inconveniences in life, because of their supposed beauty. That's ridiculous. I just know that my memory is what keeps me beyond these walls and the windows. I don't want to forget anything, most importantly the least important things. Don't forget the bending birch peppered in black birds, or the blinking lights of a wheezing city by the lake. I'll be back soon enough. Soon enough.
All my hope, love and patience,
Chris
***A Rapid and Triumphant Update***
My platelets have bounced up to 28,000 from their previous 12,000 this morning. This is another one of those victories. I'll be sucking the marrow (har har) from this success for a while. We are going to put a PICC line in tonight, which will give them a port for chemo and blood, without having to stick me with needles. Like I said, victory indeed. We aren't through this wood yet, but are pressing on through the braids of branches and vines until we find our next spot of camp. Thank you, everyone, thank you for keeping me in this fight. All paths eventually clear for a moment. This is ours, for now! Happy Friday, Happy Weekend!
All my deepest love,
Chris
Wednesday, February 10, 2010
Burgeoning Cups and the Timid Drinker
It's Wednesday February 1oth, 7:00 pm
It's been another slow day struggle. We continue to receive news concerning how low my platelets are. This being the case, we're dialoguing some options to boost the count. That being said, I am hoping that some of these other options do the trick and we can move forward. At this point, I'm struggling to divide the worry I have between two burgeoning cups of uncertainty: leukemia and the bleeding. I realized that I can't feed both of these vague concepts with my tense time and dissipating energy. I have to focus on one, while sidelining the other. Bleeding is the most imminent concern. So, my positive energy is reserved for that.
With so much time on my mind, I think about these issues in literary terms and analogies. I suppose my mind has been molded that way through class, writing/reading, or maybe genetic predisposition. I'm not sure. At any rate, I remembered the punishment of King Sisyphus. The Greek king, destined to roll a rock up a hill in Tartarus only to watch it roll back down as soon he reached the zenith. Much of my process shares this motif. To that end, I thought of a song by Wilco:
I was maimed by rock and roll.
I was tamed by rock and roll.
I got my name from rock and roll.
I appreciate a dash of irony and a good pun every now and again. If there was something I needed today, it was this. It's hokey, but for those of you who know me, this isn't the first instance in which this phrase applies. I have to take this in stride, uncover patience for whatever my vague and distant future will hold.
I have to stick with what I know:
1.) I will beat this
2.) I have an amazing support group
3.) Reading and writing are helping
4.) Hope isn't something I can lose, just misplace.
5.) If looking heroine chic is still cool, than my left arm is the king of the scene.
So, we stick to the certainties, because they'll grow everyday. I need to plant this in my mind, keep this rooted and remember it's the things that I've set in stone that will be the landmarks on this adventure.
Today's weary amble through uncertainties and vagueness made one thing clear: it has been a day, for good or ill. They all can't be good ones, and I have to salvage what I can from the bad. I have to realize that there's a reason we must endure the darkness, if only to realize what it means to be within the light.
All my love,
Chris
It's been another slow day struggle. We continue to receive news concerning how low my platelets are. This being the case, we're dialoguing some options to boost the count. That being said, I am hoping that some of these other options do the trick and we can move forward. At this point, I'm struggling to divide the worry I have between two burgeoning cups of uncertainty: leukemia and the bleeding. I realized that I can't feed both of these vague concepts with my tense time and dissipating energy. I have to focus on one, while sidelining the other. Bleeding is the most imminent concern. So, my positive energy is reserved for that.
With so much time on my mind, I think about these issues in literary terms and analogies. I suppose my mind has been molded that way through class, writing/reading, or maybe genetic predisposition. I'm not sure. At any rate, I remembered the punishment of King Sisyphus. The Greek king, destined to roll a rock up a hill in Tartarus only to watch it roll back down as soon he reached the zenith. Much of my process shares this motif. To that end, I thought of a song by Wilco:
I was maimed by rock and roll.
I was tamed by rock and roll.
I got my name from rock and roll.
I appreciate a dash of irony and a good pun every now and again. If there was something I needed today, it was this. It's hokey, but for those of you who know me, this isn't the first instance in which this phrase applies. I have to take this in stride, uncover patience for whatever my vague and distant future will hold.
I have to stick with what I know:
1.) I will beat this
2.) I have an amazing support group
3.) Reading and writing are helping
4.) Hope isn't something I can lose, just misplace.
5.) If looking heroine chic is still cool, than my left arm is the king of the scene.
So, we stick to the certainties, because they'll grow everyday. I need to plant this in my mind, keep this rooted and remember it's the things that I've set in stone that will be the landmarks on this adventure.
Today's weary amble through uncertainties and vagueness made one thing clear: it has been a day, for good or ill. They all can't be good ones, and I have to salvage what I can from the bad. I have to realize that there's a reason we must endure the darkness, if only to realize what it means to be within the light.
All my love,
Chris
Tuesday, February 9, 2010
A Patient Understanding Patience
It's Tuesday February 9th, 8:57 pm
Today has been a day of patience. I think that is certainly one word for it. Yesterday was a peak in my attitude toward taking the first step. However, as we discovered this morning, my platelets, which rose to 12,000 yesterday, were only at 4,000 when our attending doctor arrived today. This isn't what we're looking for. It seems like whatever we do to raise the count seems to end in them dissipating over the next several hours. It's too earlier to expect the chemo to really fix the platelet problem, because at this point it's still killing everything. Yet, 4,000 platelets are nothing compared to healthy adult (150,000 is low for most). It's good that I'm not 100 years old and I retain an equilibrium (though some may disagree). I have faith in my balance and reflexes, but one can't be too careful when bleeding can be a serious concern. Not to cause worry, folks. I'm doing everything to monitor myself. And let's face it, my world at this point exists between the pages of books, reels of film, and lines of digital internet code. Not much to hurt myself on, physically, but it's still something I will attend to.
My doctors are doing everything to make sure this is getting fixed. When worry set into my mind this morning, I simply had to ask, "Will my platelets ever go up?" It occurs to me now this sounds like such a simple, naive question, but no one had said it yet. No one proved to me that this could be remedied. Again, I was lost in my woods. Yet, a sweet doctor, who has been with me since I was admitted, brushed her coiled red hair behind her aging ear and said, "Yes." That was it. Someone had to say it.
The possibility of sneezing and bleeding from my nose for 3 hours was startling enough for me to understand. I needed someone to speak definitively, directly and assuredly. I didn't need speculation, caution or theorizing. I needed a statement. I don't want to start naming doctors here, but she made top spot on my list this morning. Not that she'll read this, but thank you.
A medical morning, indeed. My day wound down after that. I feel healthy. I feel energetic, almost. I spent time looking out the window this afternoon, as the snow coated Pittsburgh. I haven't felt that air in days. It's a simple thing to miss. The breeze. The sting and sensation of scurrying across a cold lawn to a warm room. It reminded me of frozen hands tucked under the shirt of the beautiful girl beside me. Her body serpentine on two feet, rolling like a wave at high tide.
My white shoes have molded to linoleum of this room, but they have their patience. My jeans dangle in a closet 200 miles away, swaying with lint and linens, but have their patience. My scarf and my coat, my "trademark" hoodies all reside in dangling darkness. Yet, they don't scuffle in their silence. They have their patience. I must have mine too.
Oh, I can think of more than one cliche about maintaining patience. I am sure I dawdle all along the lines of the cliche, but I don't intend to. I intend to enact active patience. I am going to learn as much as I can from the people here. I'm no scientist, but I took biology in high school. That qualifies me, right? Well, it has to for now. I won't let this thing take from me, repeatedly. I'm going to take what I can from it, while I can. For as much as it drains and cinches, shears and tears at my blood cells, I'll absorb every dot of information I dare to glean.
The thing about dots is that they eventually connect.
Outside of the 7th story hospital window, I've noticed a distant tree draped in snow. It isn't a birch tree -- except for today. With that in mind, I think of the great Robert Frost.
One could do worse than be a swinger of birches.
All my love, thoughts, and hopes,
Chris
P.S. some pictures of my new abode.
This is C-3p0. He's fluent in several different blood types.
This is my dinner. It was pasta tonight. Egg Noodles and Ketchup.
....
This is Rachael. She's been the reason for a lot of those things (smiles) on my face.
Today has been a day of patience. I think that is certainly one word for it. Yesterday was a peak in my attitude toward taking the first step. However, as we discovered this morning, my platelets, which rose to 12,000 yesterday, were only at 4,000 when our attending doctor arrived today. This isn't what we're looking for. It seems like whatever we do to raise the count seems to end in them dissipating over the next several hours. It's too earlier to expect the chemo to really fix the platelet problem, because at this point it's still killing everything. Yet, 4,000 platelets are nothing compared to healthy adult (150,000 is low for most). It's good that I'm not 100 years old and I retain an equilibrium (though some may disagree). I have faith in my balance and reflexes, but one can't be too careful when bleeding can be a serious concern. Not to cause worry, folks. I'm doing everything to monitor myself. And let's face it, my world at this point exists between the pages of books, reels of film, and lines of digital internet code. Not much to hurt myself on, physically, but it's still something I will attend to.
My doctors are doing everything to make sure this is getting fixed. When worry set into my mind this morning, I simply had to ask, "Will my platelets ever go up?" It occurs to me now this sounds like such a simple, naive question, but no one had said it yet. No one proved to me that this could be remedied. Again, I was lost in my woods. Yet, a sweet doctor, who has been with me since I was admitted, brushed her coiled red hair behind her aging ear and said, "Yes." That was it. Someone had to say it.
The possibility of sneezing and bleeding from my nose for 3 hours was startling enough for me to understand. I needed someone to speak definitively, directly and assuredly. I didn't need speculation, caution or theorizing. I needed a statement. I don't want to start naming doctors here, but she made top spot on my list this morning. Not that she'll read this, but thank you.
A medical morning, indeed. My day wound down after that. I feel healthy. I feel energetic, almost. I spent time looking out the window this afternoon, as the snow coated Pittsburgh. I haven't felt that air in days. It's a simple thing to miss. The breeze. The sting and sensation of scurrying across a cold lawn to a warm room. It reminded me of frozen hands tucked under the shirt of the beautiful girl beside me. Her body serpentine on two feet, rolling like a wave at high tide.
My white shoes have molded to linoleum of this room, but they have their patience. My jeans dangle in a closet 200 miles away, swaying with lint and linens, but have their patience. My scarf and my coat, my "trademark" hoodies all reside in dangling darkness. Yet, they don't scuffle in their silence. They have their patience. I must have mine too.
Oh, I can think of more than one cliche about maintaining patience. I am sure I dawdle all along the lines of the cliche, but I don't intend to. I intend to enact active patience. I am going to learn as much as I can from the people here. I'm no scientist, but I took biology in high school. That qualifies me, right? Well, it has to for now. I won't let this thing take from me, repeatedly. I'm going to take what I can from it, while I can. For as much as it drains and cinches, shears and tears at my blood cells, I'll absorb every dot of information I dare to glean.
The thing about dots is that they eventually connect.
Outside of the 7th story hospital window, I've noticed a distant tree draped in snow. It isn't a birch tree -- except for today. With that in mind, I think of the great Robert Frost.
One could do worse than be a swinger of birches.
All my love, thoughts, and hopes,
Chris
P.S. some pictures of my new abode.
This is C-3p0. He's fluent in several different blood types.
This is my dinner. It was pasta tonight. Egg Noodles and Ketchup.
....
This is Rachael. She's been the reason for a lot of those things (smiles) on my face.
A Quick Hello
It's Tuesday February 9th, 1:46 am
This is my first attempt at a video cast, don't judge me. Haha, it's late.
....
This is my first attempt at a video cast, don't judge me. Haha, it's late.
....
Monday, February 8, 2010
A New Morning
It's Monday February 8th, 12:47 pm
This morning erupted with a seemingly foreign and unexpected experience: good news. I don't think I can even explain the elation of hearing something positive. Not that the nurses, doctors and oncologists haven't been positive, but there has been enough uncertainty to a fill a quarry lake. Since the chemo and the steroid (a compliment with the chemo) my platelet count has risen from 5,000 to 12,000 overnight. Though 12,000 isn't spectacular (I need 50,000 before they'll consider operating on me, haha), it's vastly better than 5,000, which is extremely low. A small victory can mean the most sometimes, I suppose.
Today has been a step forward since yesterday. I haven't crested a single fever, I've been comfortable, no bleeding, nothing abnormal to speak of. There's relief in taking on a challenge, even if it looms above you like a building in the sun. The anxiety of waiting, coupled with a rapid influx of new information has been far worse than any needle, biopsy or fever that's stung me. So, here's to a new morning; a change of uncertain extremes, but to progress, hope and recovery.
Funny story. I mentioned the steroid that's given with the chemo. Well, its side effects can be well predicted: personality changes (i.e. mood swings). As I read over the possible side effects, I passed over this detail with little consideration or thought. How deep or penetrating could a little mood swing be? Well, it's been an interesting 24 hours. I've found myself sensitive to the smallest things. I don't mean to say that I've been getting angry or irritated about little quirks. Rather, I find my eyes welling at the silliest moments. Not tears of sorrow, pity or defeat, but of happiness -- or something like it.
--For instance, I was watching the movie Jack on TV (don't judge me, I don't have many choices). For anyone who's familiar with this movie, there's a scene where Robin Williams is in a tree house with the boys and Bill Cosby. They're laughing, creating concoctions of disgusting origins and daring one another to eat it. I was so overwhelmed at this scene that I had to look out the window. It got to me. Sure, it sounds like a sweet moment, right? But, in the context of the movie it carries no emotional weight. At all. Yet, here I am, 23 years old, almost in the midst of a full blown blubber-fest, because Hairy-Arms Williams and Old Man Cosby are eating whipped cream and dirt covered noodles.
But, I realized that's a lot like the everyday. My experience may have been drug induced, but everyday there are things that dislodge us from our monotony. It could be the city lights at night sparkling like the sea in sun. It could be the way the snow swings from birches with such gravity and balance that at any moment we expect it to fall, but doesn't. It isn't the small things, it's the things that go unnoticed. I think of an amazing poet, Adam Zagajewski, who wrote an essay called The Shabby and Sublime. I won't go into much detail, but he discusses that the most profound, dynamically exciting and heart-racing experiences are found within the "shabbiest" of things. All we have to do is notice.
Well, now that I've expounded on total irrelevance for longer than necessary, I put it to you. Have you guys ever felt that striking moment of the sublime in the most mundane of moments? It isn't often recognized, it comes without warning, but is intensely beautiful when it appears. Think about it. I'm curious what you guys have to say. Hidden moments can provide the greatest victories sometimes.
It's been a great day. I'm thankful for that in ways that I can't count. To everyone of you, thank you. I hope that you share this hidden moment with me.
All my love,
Chris
This morning erupted with a seemingly foreign and unexpected experience: good news. I don't think I can even explain the elation of hearing something positive. Not that the nurses, doctors and oncologists haven't been positive, but there has been enough uncertainty to a fill a quarry lake. Since the chemo and the steroid (a compliment with the chemo) my platelet count has risen from 5,000 to 12,000 overnight. Though 12,000 isn't spectacular (I need 50,000 before they'll consider operating on me, haha), it's vastly better than 5,000, which is extremely low. A small victory can mean the most sometimes, I suppose.
Today has been a step forward since yesterday. I haven't crested a single fever, I've been comfortable, no bleeding, nothing abnormal to speak of. There's relief in taking on a challenge, even if it looms above you like a building in the sun. The anxiety of waiting, coupled with a rapid influx of new information has been far worse than any needle, biopsy or fever that's stung me. So, here's to a new morning; a change of uncertain extremes, but to progress, hope and recovery.
Funny story. I mentioned the steroid that's given with the chemo. Well, its side effects can be well predicted: personality changes (i.e. mood swings). As I read over the possible side effects, I passed over this detail with little consideration or thought. How deep or penetrating could a little mood swing be? Well, it's been an interesting 24 hours. I've found myself sensitive to the smallest things. I don't mean to say that I've been getting angry or irritated about little quirks. Rather, I find my eyes welling at the silliest moments. Not tears of sorrow, pity or defeat, but of happiness -- or something like it.
--For instance, I was watching the movie Jack on TV (don't judge me, I don't have many choices). For anyone who's familiar with this movie, there's a scene where Robin Williams is in a tree house with the boys and Bill Cosby. They're laughing, creating concoctions of disgusting origins and daring one another to eat it. I was so overwhelmed at this scene that I had to look out the window. It got to me. Sure, it sounds like a sweet moment, right? But, in the context of the movie it carries no emotional weight. At all. Yet, here I am, 23 years old, almost in the midst of a full blown blubber-fest, because Hairy-Arms Williams and Old Man Cosby are eating whipped cream and dirt covered noodles.
But, I realized that's a lot like the everyday. My experience may have been drug induced, but everyday there are things that dislodge us from our monotony. It could be the city lights at night sparkling like the sea in sun. It could be the way the snow swings from birches with such gravity and balance that at any moment we expect it to fall, but doesn't. It isn't the small things, it's the things that go unnoticed. I think of an amazing poet, Adam Zagajewski, who wrote an essay called The Shabby and Sublime. I won't go into much detail, but he discusses that the most profound, dynamically exciting and heart-racing experiences are found within the "shabbiest" of things. All we have to do is notice.
Well, now that I've expounded on total irrelevance for longer than necessary, I put it to you. Have you guys ever felt that striking moment of the sublime in the most mundane of moments? It isn't often recognized, it comes without warning, but is intensely beautiful when it appears. Think about it. I'm curious what you guys have to say. Hidden moments can provide the greatest victories sometimes.
It's been a great day. I'm thankful for that in ways that I can't count. To everyone of you, thank you. I hope that you share this hidden moment with me.
All my love,
Chris
Sunday, February 7, 2010
The Inferno
It's Sunday February 7th, 2:22 pm
Today has had its ups and downs. Certainly not the first day to be like that, and it won't be the last. I've been running fevers since yesterday and have been blessed with the chills that precede them. The good thing about the chills, if there is one, is that they give me heated blankets. If you've ever been cold and hit with a heat blanket, then you can relate. It's a beautiful thing. It would be great if I didn't peak a fever right after the chills. Oh well, they tell it's normal with my blood count to have fevers and such. Just uncomfortable I suppose.
Enough of that negativity!
I had awesome visitors last night and this afternoon. Some really great people came in and lifted my spirits. Just to be able to speak with friends face to face is great. Laughing has become such incredible feeling. It's strange. I cherish every chuckle, I suppose. Not to sound too corny. I've said it a lot (broken record), but I am so grateful to have these people around me. I love you all.
So, the game plan (as of now) is to start chemo tomorrow regardless of my platelet counts. They will administer it through my IV, which will hopefully attack all the leukemia cells and allow my body to produce its own platelets. When that happens, I'll be able to go to the OR for my metaport and do my spinal tap/intrathecal chemo. They have to do spinal chemo and IV chemo at separate times, because the IV chemo can't pass the blood-brain barrier. I know it sounds tremendously unpleasant, but the intrathecal (spinal) chemo will bump my survival chances up by about 40%. I'm excited and mortified, stoked and scared, ready and reluctant to begin my chemotherapy. It will be an adventure for sure.
I think of Dante, lost in a dark wood, circled by his beasts before he's taken to Hell. Is it more terrifying to anticipate or participate? I'm not certain at this point, but am ready to descend, to make way my adventure. They shouted to Dante, "Abandon all hope, ye who enter." But he made it as Virgil guided him. I feel like I am Dante, and those around me are my Virgil. You may have to carry me, at times, but ultimately we'll make it through.
All my love, my thoughts, and my wishes,
Chris
P.S. Go Saints? Who knows. Not the Steelers.
***Update***
I have officially started chemo. At about 11:30 pm we started the injections via IV. This takes a little longer to issue, but works the same as a metaport. We have started down the road, be it the walk through hell. I will defeat this. I will overcome and maintain. And I will do it with courage, tenacity, vigor, and intensity endowed by all my loved ones.
Qui si convien lasciare ogne sospetto;
ogne viltà convien che qui sia morta.
All my love,
Chris
Today has had its ups and downs. Certainly not the first day to be like that, and it won't be the last. I've been running fevers since yesterday and have been blessed with the chills that precede them. The good thing about the chills, if there is one, is that they give me heated blankets. If you've ever been cold and hit with a heat blanket, then you can relate. It's a beautiful thing. It would be great if I didn't peak a fever right after the chills. Oh well, they tell it's normal with my blood count to have fevers and such. Just uncomfortable I suppose.
Enough of that negativity!
I had awesome visitors last night and this afternoon. Some really great people came in and lifted my spirits. Just to be able to speak with friends face to face is great. Laughing has become such incredible feeling. It's strange. I cherish every chuckle, I suppose. Not to sound too corny. I've said it a lot (broken record), but I am so grateful to have these people around me. I love you all.
So, the game plan (as of now) is to start chemo tomorrow regardless of my platelet counts. They will administer it through my IV, which will hopefully attack all the leukemia cells and allow my body to produce its own platelets. When that happens, I'll be able to go to the OR for my metaport and do my spinal tap/intrathecal chemo. They have to do spinal chemo and IV chemo at separate times, because the IV chemo can't pass the blood-brain barrier. I know it sounds tremendously unpleasant, but the intrathecal (spinal) chemo will bump my survival chances up by about 40%. I'm excited and mortified, stoked and scared, ready and reluctant to begin my chemotherapy. It will be an adventure for sure.
I think of Dante, lost in a dark wood, circled by his beasts before he's taken to Hell. Is it more terrifying to anticipate or participate? I'm not certain at this point, but am ready to descend, to make way my adventure. They shouted to Dante, "Abandon all hope, ye who enter." But he made it as Virgil guided him. I feel like I am Dante, and those around me are my Virgil. You may have to carry me, at times, but ultimately we'll make it through.
All my love, my thoughts, and my wishes,
Chris
P.S. Go Saints? Who knows. Not the Steelers.
***Update***
I have officially started chemo. At about 11:30 pm we started the injections via IV. This takes a little longer to issue, but works the same as a metaport. We have started down the road, be it the walk through hell. I will defeat this. I will overcome and maintain. And I will do it with courage, tenacity, vigor, and intensity endowed by all my loved ones.
Qui si convien lasciare ogne sospetto;
ogne viltà convien che qui sia morta.
- Here one must leave behind all hesistation;
here every cowardice must meet its death
All my love,
Chris
Saturday, February 6, 2010
The Surgery and Snowfall
It's Saturday, February 6th, 9:21 am
For today's docket: They're getting matched platelets for me, because my body is eating up the other platelet transfusions that I've had. Meaning, my body has developed antibodies against the communal platelets (most platelet packs that are transfused are an amalgam of several donors, not necessarily exact matches with my type of platelets). Therefore, my body is fighting off some of the transfusions of the platelets. They aren't going down, but they certainly aren't going up. However, once they have the matched platelets they should rebound quickly. Once that happens, I'll be able to go to the OR for the metaport (IV), which is what they wanted to place yesterday. They will also stick me for my spinal fluid, which is where the first of my chemo will be injected. Hopefully, this all gets done today. None of it sounds pleasant, but will push me down the long road to recovery.
Yesterday was a quiet night. Only some platelets and anti-biotics. Rachael and I watched the snowfall accumulate throughout the night. It almost looks like Erie. Poor Pittsburghers, they must be terrified, like lost children in the woods. Haha. I know some of the nurses weren't allowed to leave last night, because of the weather. What an awful situation: Weather too bad to drive in, no new staff able to come in, all night staff must stay. God, I'd be doing hits of morphine between bed checks. These people are troopers. For as much as they have done for me, I would be remiss to not acknowledge their fortitude, strength, and encouragement. Maybe it's because I've never held a job that, in turn, held my heart. From busing diner tables, to mowing lawns, to filing papers, to shucking liquor, I've never felt that I was doing something that motivated me. I'll give it up for these men and women, they are passionate people.
I remember some of my entry level jobs and the horrors of working them. Eat'N'Park, the place for smiles, and future disgruntled employee hacksaw murderers. I know there are a million stories from a million people about their worst days of work. I want to know something different. I want to know about your dream job; or if that's too vague, at least the best day of work you've had at your current job.
My dream job is to write and explore, all day. I want a nice comfortable leather chair that squeaks, like an old door, when it turns. A big mahogany desk with a little lamp and green lampshade. Most of all I want books on my walls, books of men and women who've known the craft, practiced and embellished the craft, and mastered it. I want to be a poet. I want to be an improviser of language and syntax. I know I don't need any of these things for that, but it's an ideal, and I enjoy that. Me, at a desk with a bay window looking out on snow and hills, a piece of paper and pen in hand. Sure, it's cliche and trite. The reality is that there will be people flooding the room, dogs shitting on the carpet, gutters hanging like a old man's waistband, which I'll have to climb to repair. But a dream is a dream is a dream. If you're bold enough, let me know what yours is.
Thank you, everyone, for taking the time to read about my thoughts and progress. It's been amazing to hear your comments and support. Each day I wake up a lucky man, not because of my situation, because I'm enveloped in the love and support of my friends and family. None of you are far from my mind.
All my love,
Chris
P.S. My mom has started a blog of her own, of sorts. It will reach a point where I probably won't be able to update this as often as I have. Check out www.carepages.com, click on the Visit tab, and search for "chrispcare" and you should be golden. Her updates aren't as rambling and long-winded as mind.
For today's docket: They're getting matched platelets for me, because my body is eating up the other platelet transfusions that I've had. Meaning, my body has developed antibodies against the communal platelets (most platelet packs that are transfused are an amalgam of several donors, not necessarily exact matches with my type of platelets). Therefore, my body is fighting off some of the transfusions of the platelets. They aren't going down, but they certainly aren't going up. However, once they have the matched platelets they should rebound quickly. Once that happens, I'll be able to go to the OR for the metaport (IV), which is what they wanted to place yesterday. They will also stick me for my spinal fluid, which is where the first of my chemo will be injected. Hopefully, this all gets done today. None of it sounds pleasant, but will push me down the long road to recovery.
Yesterday was a quiet night. Only some platelets and anti-biotics. Rachael and I watched the snowfall accumulate throughout the night. It almost looks like Erie. Poor Pittsburghers, they must be terrified, like lost children in the woods. Haha. I know some of the nurses weren't allowed to leave last night, because of the weather. What an awful situation: Weather too bad to drive in, no new staff able to come in, all night staff must stay. God, I'd be doing hits of morphine between bed checks. These people are troopers. For as much as they have done for me, I would be remiss to not acknowledge their fortitude, strength, and encouragement. Maybe it's because I've never held a job that, in turn, held my heart. From busing diner tables, to mowing lawns, to filing papers, to shucking liquor, I've never felt that I was doing something that motivated me. I'll give it up for these men and women, they are passionate people.
I remember some of my entry level jobs and the horrors of working them. Eat'N'Park, the place for smiles, and future disgruntled employee hacksaw murderers. I know there are a million stories from a million people about their worst days of work. I want to know something different. I want to know about your dream job; or if that's too vague, at least the best day of work you've had at your current job.
My dream job is to write and explore, all day. I want a nice comfortable leather chair that squeaks, like an old door, when it turns. A big mahogany desk with a little lamp and green lampshade. Most of all I want books on my walls, books of men and women who've known the craft, practiced and embellished the craft, and mastered it. I want to be a poet. I want to be an improviser of language and syntax. I know I don't need any of these things for that, but it's an ideal, and I enjoy that. Me, at a desk with a bay window looking out on snow and hills, a piece of paper and pen in hand. Sure, it's cliche and trite. The reality is that there will be people flooding the room, dogs shitting on the carpet, gutters hanging like a old man's waistband, which I'll have to climb to repair. But a dream is a dream is a dream. If you're bold enough, let me know what yours is.
Thank you, everyone, for taking the time to read about my thoughts and progress. It's been amazing to hear your comments and support. Each day I wake up a lucky man, not because of my situation, because I'm enveloped in the love and support of my friends and family. None of you are far from my mind.
All my love,
Chris
P.S. My mom has started a blog of her own, of sorts. It will reach a point where I probably won't be able to update this as often as I have. Check out www.carepages.com, click on the Visit tab, and search for "chrispcare" and you should be golden. Her updates aren't as rambling and long-winded as mind.
Friday, February 5, 2010
Initial Steps
It's Friday February 5th
Today sounds like it will be another grueling day to get me set up for my chemotherapy treatment. Since I've decided on doing the clinical trial, I have to give another bone marrow biopsy today, which is a painful procedure, but necessary. After that, I'm to have a port put in somewhere on my chest, which is a more permanent IV and will be transporting the chemo into my body. That's done in the OR, but before I can go, I need to have plenty of platelets to clot the bleeding that will happen during that. So, this morning is going to be filled with transfusions and the like. Later on today I'm getting a spinal tap to check for cancer cells in my spinal fluid. They're going to inject the first of the chemo into my spine to kill any hidden cells to keep them from making their way to my central nervous system. None of this sounds like a good time, but I'd rather endure it than discover what it means to be without it. Wish me luck for today, it will be a walk through hell, I'm sure. Tomorrow will be brighter.
Last night, the doctors laid out their plan of attack for my chemo and recovery. All told, it looks like a 3 year process to get me to a cure. That being said, I'm trying to think of what things will be like 3 years from now. I'm compiling a list of "Headlines" from the year 2013.
- Michael Cera: Finally Too Old to Be 16
- People Still Laughing: Palin Humiliated in 2012
- O'Brien Steals 'Tonight Show' Back From Leno's Massive Chin, Ratings Soar
- Flying Cars Still 3 Years Away: Public Outrage
Well, that's not a very big list, but it's a start. If you guys have any idea for headlines, let me know. We may not be great at predicting the future, but we can sure as hell make fun of it.
Thanks again to everyone who has responded so positively to all this news. My life has changed. There's no doubt about that. What's making this easier is the support of everyone. I just want everyone to know that. All my love.
Chris
*****Update*****
Hey everyone! Turns out my platelets weren't high enough for the surgery today, so that means its been postponed until tomorrow. I gave my bone marrow biopsy today, with as little pain as possible, and that went well. I wasn't allowed to eat until like 3pm, because they weren't sure if I was going to the OR or not. That wasn't as much fun, as I'm sure everyone's aware. I am in good spirits and hope everyone is doing well. This isn't much of an update, but I figured I'd keep everyone posted on the changes to the plan.
I assume the 2 procedures (the OR visit and the Spinal Tap) with occur tomorrow. After that, I should be ready for my chemotherapy. I know there's a great show in Pittsburgh tonight that I'm bummed to be missing out on. I love those kids dearly, and I know they'll destroy it! Go to Mr. Smalls if you're in Pittsburgh (the Land of Snow at the moment) and enjoy some great music.
I'll keep everyone updated as the information comes to me. I love you all!
Chris
Today sounds like it will be another grueling day to get me set up for my chemotherapy treatment. Since I've decided on doing the clinical trial, I have to give another bone marrow biopsy today, which is a painful procedure, but necessary. After that, I'm to have a port put in somewhere on my chest, which is a more permanent IV and will be transporting the chemo into my body. That's done in the OR, but before I can go, I need to have plenty of platelets to clot the bleeding that will happen during that. So, this morning is going to be filled with transfusions and the like. Later on today I'm getting a spinal tap to check for cancer cells in my spinal fluid. They're going to inject the first of the chemo into my spine to kill any hidden cells to keep them from making their way to my central nervous system. None of this sounds like a good time, but I'd rather endure it than discover what it means to be without it. Wish me luck for today, it will be a walk through hell, I'm sure. Tomorrow will be brighter.
Last night, the doctors laid out their plan of attack for my chemo and recovery. All told, it looks like a 3 year process to get me to a cure. That being said, I'm trying to think of what things will be like 3 years from now. I'm compiling a list of "Headlines" from the year 2013.
- Michael Cera: Finally Too Old to Be 16
- People Still Laughing: Palin Humiliated in 2012
- O'Brien Steals 'Tonight Show' Back From Leno's Massive Chin, Ratings Soar
- Flying Cars Still 3 Years Away: Public Outrage
Well, that's not a very big list, but it's a start. If you guys have any idea for headlines, let me know. We may not be great at predicting the future, but we can sure as hell make fun of it.
Thanks again to everyone who has responded so positively to all this news. My life has changed. There's no doubt about that. What's making this easier is the support of everyone. I just want everyone to know that. All my love.
Chris
*****Update*****
Hey everyone! Turns out my platelets weren't high enough for the surgery today, so that means its been postponed until tomorrow. I gave my bone marrow biopsy today, with as little pain as possible, and that went well. I wasn't allowed to eat until like 3pm, because they weren't sure if I was going to the OR or not. That wasn't as much fun, as I'm sure everyone's aware. I am in good spirits and hope everyone is doing well. This isn't much of an update, but I figured I'd keep everyone posted on the changes to the plan.
I assume the 2 procedures (the OR visit and the Spinal Tap) with occur tomorrow. After that, I should be ready for my chemotherapy. I know there's a great show in Pittsburgh tonight that I'm bummed to be missing out on. I love those kids dearly, and I know they'll destroy it! Go to Mr. Smalls if you're in Pittsburgh (the Land of Snow at the moment) and enjoy some great music.
I'll keep everyone updated as the information comes to me. I love you all!
Chris
Thursday, February 4, 2010
The Purpose
If there's one thing that I've realized in the past few days, it's that my friends and family are the foundation to my life. They are all the roots from which my branches grow and spring leaves. They are the source of my inspiration, courage, love, hope and support. Needless to say, the diagnosis of Leukemia has been a shock. Not just to me, though. This has been a bitter bullet for many people to take. That being said, I wanted to make something that would hopefully provide information about me as I battle this sickness. I wanted to make a journal (of sorts) to keep people updated, if they are interested, on my progress. I want this to be a conduit through which friends and family can ask questions, leave comments, and keep informed. That's what this blogspot will be for.
It's 1:24 pm on Thursday February 4.
Today hasn't been particularly busy. We've received word from the doctors that the bone marrow biopsy I provided yesterday has come back with the same results as the Erie biopsy. Acute Lymphocytic Leukemia (ALL), which is a form leukemia found in children under 13 and people over 50. Which makes me a bit of an anomaly for these doctors. Lucky me, because they seem extra interested in my case. They have been mentioning a clinical trial that will tailor the chemotherapy to how well it responds with my body and the disease. I have to decide whether or not to participate by this weekend. As long as they assure me of my recovery and the proper use of the information they get, I'm all for it. The treatment for this disease has been moved forward in the past because of people who offered to participate in these trials. I'd love to know (after this is all taken care of) that I might have done a little good for someone going through this same thing.
So, the status for now is waiting. Unfortunately, there's not much for me to do at this point other than read and write. I have been watching an HBO series about John Adams, which Nick let me borrow. It's interesting as all hell. I'd recommend it to anyone. If anyone has suggestions for books, music, movies, TV shows or the like, let me know. I've got nothing but time at this point.
I will do my best to keep this blog up-to-date and on point as I receive more information. I've been told by many that they are thinking of me, but I want everyone to know that what keeps me going is that I've been thinking of all of you. I love you all, but more than that. The gauntlet I'm running has been eased by the support and encouragement of everyone. Thank you all so much. I might be sailing through a dark sea right now, but your love will be the star that will guide me back home.
Chris
It's 1:24 pm on Thursday February 4.
Today hasn't been particularly busy. We've received word from the doctors that the bone marrow biopsy I provided yesterday has come back with the same results as the Erie biopsy. Acute Lymphocytic Leukemia (ALL), which is a form leukemia found in children under 13 and people over 50. Which makes me a bit of an anomaly for these doctors. Lucky me, because they seem extra interested in my case. They have been mentioning a clinical trial that will tailor the chemotherapy to how well it responds with my body and the disease. I have to decide whether or not to participate by this weekend. As long as they assure me of my recovery and the proper use of the information they get, I'm all for it. The treatment for this disease has been moved forward in the past because of people who offered to participate in these trials. I'd love to know (after this is all taken care of) that I might have done a little good for someone going through this same thing.
So, the status for now is waiting. Unfortunately, there's not much for me to do at this point other than read and write. I have been watching an HBO series about John Adams, which Nick let me borrow. It's interesting as all hell. I'd recommend it to anyone. If anyone has suggestions for books, music, movies, TV shows or the like, let me know. I've got nothing but time at this point.
I will do my best to keep this blog up-to-date and on point as I receive more information. I've been told by many that they are thinking of me, but I want everyone to know that what keeps me going is that I've been thinking of all of you. I love you all, but more than that. The gauntlet I'm running has been eased by the support and encouragement of everyone. Thank you all so much. I might be sailing through a dark sea right now, but your love will be the star that will guide me back home.
Chris
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