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
Monday, February 8, 2010
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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