So, here's some news:
Cancer's back.
Went in last Monday (November 26) for routine blood work and there they be, those bastard monocytes from the Old Realm charging on horseback over the horizon. So, once again we did the obvious and killed off everyone in the hopes that the horseback riding folk got caught in the blast. About 20-25 days from now we'll find out if I'm in remission, and if I am, we try another transplant. If not, well I don't really know what the plan is. Any more chemo at the moment isn't helpful because my white count is already at zero, so right now the plan is to wait in a Viktor Navorski style limbo for the next few weeks. I can't go to transplant, I can't do more chemo, and I can't go home.
So I wait.
Thursday, December 6, 2012
Sunday, July 29, 2012
It's Been a Privilege Writing for You.
Just wanted to let you all know, blog posts will probably be slowing down here. I'm doing well and there isn't really much to report other than things like "today I ate breakfast and it was delicious" which may be interesting for some of you to read but sadly it is not very interesting for me to write. If there is anything crazy that happens, like a relapse or maybe just a readmission of some sort, I'll try to update, but for now on you should go by the idea that "no news is good news."
Feel free to contact me if you'd like if you're curious.
To borrow from one of my favorite movies:
"We're at stable one. The ship is secure. This is Apollo 13 signing off."
Feel free to contact me if you'd like if you're curious.
To borrow from one of my favorite movies:
"We're at stable one. The ship is secure. This is Apollo 13 signing off."
Wednesday, July 25, 2012
Recovery Update
Walked 8.5 miles today to get some photo negatives scanned. It was a good day and I still have a meeting to go to later tonight.
Still no real word on this GvH. My liver tests were down on Monday (good), but if this rash stays around I might have to increase my steroids (not ideal).
That's all for now! Maybe later this week I'll try jogging again, or maybe kayaking some more.
Still no real word on this GvH. My liver tests were down on Monday (good), but if this rash stays around I might have to increase my steroids (not ideal).
That's all for now! Maybe later this week I'll try jogging again, or maybe kayaking some more.
Perspective
You know, this week has not been swell. My alma mater has been slammed by the NCAA without the benefit of due process, my GvH is intermittently itchy and doesn't seem have any interest in leaving me alone, my best friend's grandfather has passed away, and I'm taking 13 pills this morning to help recover from cancer that I got before I was 25 years old.
But people in Haiti are suffering more than me.
So, what can I really complain about?
But people in Haiti are suffering more than me.
So, what can I really complain about?
Sunday, July 22, 2012
Sailboats are Weird.
I would love to go back in time to the conversation where someone invented a sailboat:
Bill looks out on the water. It sure is windy this day in the past. Kym walk up.
"What are you pondering, Bill?" she asks.
Bill takes a moment, staring out under his furrowed brow. "Do you see the water out there?"
"Well, sure I do!"
"Well.. okay... you see how... you see how the wind is going, that way?" He makes a gesture to the left.
"Why Bill, the wind always blows that way in the summertime!"
"Of course, of course. But.. well I have a neat idea."
"Oh?"
"I think what we should do is take a boat... put a big-ass sail on it, and make it go THAT way!" He gestures to the right.
Kym looks at him, and her brow is now furrowed.
"Alright Bill."
Seriously... sailboats are WEIRD.
Anyway, I went kayaking on Friday. Went a solid 13.5 miles all while listening to the first 8 Beethoven symphonies and the first movement of the 9th. It was a good time and I'm glad that my strength seems to be returning. This GvH seems to have leveled off, but I'm not yet convinced it is going down. I guess we'll see tomorrow.
Bill looks out on the water. It sure is windy this day in the past. Kym walk up.
"What are you pondering, Bill?" she asks.
Bill takes a moment, staring out under his furrowed brow. "Do you see the water out there?"
"Well, sure I do!"
"Well.. okay... you see how... you see how the wind is going, that way?" He makes a gesture to the left.
"Why Bill, the wind always blows that way in the summertime!"
"Of course, of course. But.. well I have a neat idea."
"Oh?"
"I think what we should do is take a boat... put a big-ass sail on it, and make it go THAT way!" He gestures to the right.
Kym looks at him, and her brow is now furrowed.
"Alright Bill."
Seriously... sailboats are WEIRD.
Anyway, I went kayaking on Friday. Went a solid 13.5 miles all while listening to the first 8 Beethoven symphonies and the first movement of the 9th. It was a good time and I'm glad that my strength seems to be returning. This GvH seems to have leveled off, but I'm not yet convinced it is going down. I guess we'll see tomorrow.
Thursday, July 19, 2012
GvH
Whatuuuuup?!?!
Listening to My Chemical Romance's album, The Black Parade. It's always enough to pump me up. Though, in all honesty, I doubt the pumped-uppedness will last very long. "Why" you ask? Because I'm on a kick-ass anti-itch medication. It's like super benedryl and it stops me from itching, as the name implies. But it also knocks me on my butt faster than a banana peel.
Which brings me to a thought; banana peels, like tyrannosaurusen, are not all bad. Though I complain about my itchy GvH, it's important to remember that my old cells were.. you know.. cancer. So if the new ones want to bitch out the old ones every once in a while, Dr. Grant tells me it's a Martha Stewart level good thing. So, werd.
I went to my appointment on Wednesday with Kym, and my increased liver function is a pretty good indication that my itchy rash is GvH and not something else. This means we don't need a biopsy! That's good news here. I'm going onto another stretch of steroids, which means that I am now at risk for thrush, a goo that grows in my throat. Before, the almond shaped pill protected me from thrush, but now that I am no longer taking that, I need to drink a bad tasting goo that protects me from the bad goo.
By the way, if any of this makes no sense, it's because I'm listening to this album at a rockin' level and not proofreading.
So, drinking goo, preventing goo.... where was I?
Right! They also increased my tacrolimus. But, now that I'm on steroids, the infectious disease folk might want me to go back on the almond shaped pill to protect me from the fungal nodules on my organs... so I wouldn't have to drink the bad tasting goo. But! If we do that, then they need to lower my tacrolimus pill intake, as the increase in almond-pill will naturally increase my tac-level. But we might not do that.
Lots going on with that.
Basically, here's the dill:
I'm still doing quite well, and GvH alone doesn't have much meaning in the infection-related side of the transplant, so even though I am getting GvH 6 months out (which is not uncommon), it's not really something that affects when I will be cleared to leave Boston and go back to work.
That's an entirely new conversation right there, so I'll leave you with this to chew on for a bit and write another post soon:
Gum.
Yeah. Go chew some gum. It'll be good for your jaw muscles.
Listening to My Chemical Romance's album, The Black Parade. It's always enough to pump me up. Though, in all honesty, I doubt the pumped-uppedness will last very long. "Why" you ask? Because I'm on a kick-ass anti-itch medication. It's like super benedryl and it stops me from itching, as the name implies. But it also knocks me on my butt faster than a banana peel.
Which brings me to a thought; banana peels, like tyrannosaurusen, are not all bad. Though I complain about my itchy GvH, it's important to remember that my old cells were.. you know.. cancer. So if the new ones want to bitch out the old ones every once in a while, Dr. Grant tells me it's a Martha Stewart level good thing. So, werd.
I went to my appointment on Wednesday with Kym, and my increased liver function is a pretty good indication that my itchy rash is GvH and not something else. This means we don't need a biopsy! That's good news here. I'm going onto another stretch of steroids, which means that I am now at risk for thrush, a goo that grows in my throat. Before, the almond shaped pill protected me from thrush, but now that I am no longer taking that, I need to drink a bad tasting goo that protects me from the bad goo.
By the way, if any of this makes no sense, it's because I'm listening to this album at a rockin' level and not proofreading.
So, drinking goo, preventing goo.... where was I?
Right! They also increased my tacrolimus. But, now that I'm on steroids, the infectious disease folk might want me to go back on the almond shaped pill to protect me from the fungal nodules on my organs... so I wouldn't have to drink the bad tasting goo. But! If we do that, then they need to lower my tacrolimus pill intake, as the increase in almond-pill will naturally increase my tac-level. But we might not do that.
Lots going on with that.
Basically, here's the dill:
I'm still doing quite well, and GvH alone doesn't have much meaning in the infection-related side of the transplant, so even though I am getting GvH 6 months out (which is not uncommon), it's not really something that affects when I will be cleared to leave Boston and go back to work.
That's an entirely new conversation right there, so I'll leave you with this to chew on for a bit and write another post soon:
Gum.
Yeah. Go chew some gum. It'll be good for your jaw muscles.
Sunday, July 15, 2012
Banana peels are annoying
So there you are, driving down a nice stretch of road... when all of the sudden, BAM! you drive right over a banana peel. They're annoying is what they are.
Well, I seem to have hit my own banana peel this weekend. I was going strong for a couple months, but it was bound to catch up with me. This weekend I began to get another rash, and there is a high liklihood it is GvH (Graft vs host). The basic gist of it is, my new cells are bitching out my old cells for having different DNA. They need to get off their high horse.
Oh well. I have an appointment with Dr. Grant's nurse practitioner this week so hopefully we'll come to some sort of solution. It's frustrating though. It is a rash from my head to my knees and it's itchy. I'm going to take benedryl tonight to help me sleep without the itch.
Good news though!
On Saturday I went to Plymouth, MA to see a good friend and his wife. He's the older brother of Gator and Nittany, and he graduated high school in the same class as my brother, Fumos. I've known him for quite a long time. I used to be that little bastard kid in Boy Scouts that takes the older scout's hat. Yeah I was that kid. But he was kind and never actually hurt me, which is nice of him.
Anyway, I saw Plymouth rock, which... well... just don't get your hopes up. It was sunny out, so I wore a wide brimmed hat and sunglasses as well as a long sleeved button down. Gotta stay covered up.
Well that's all for now, I guess I'll let you know more once I know it myself.
Well, I seem to have hit my own banana peel this weekend. I was going strong for a couple months, but it was bound to catch up with me. This weekend I began to get another rash, and there is a high liklihood it is GvH (Graft vs host). The basic gist of it is, my new cells are bitching out my old cells for having different DNA. They need to get off their high horse.
Oh well. I have an appointment with Dr. Grant's nurse practitioner this week so hopefully we'll come to some sort of solution. It's frustrating though. It is a rash from my head to my knees and it's itchy. I'm going to take benedryl tonight to help me sleep without the itch.
Good news though!
On Saturday I went to Plymouth, MA to see a good friend and his wife. He's the older brother of Gator and Nittany, and he graduated high school in the same class as my brother, Fumos. I've known him for quite a long time. I used to be that little bastard kid in Boy Scouts that takes the older scout's hat. Yeah I was that kid. But he was kind and never actually hurt me, which is nice of him.
Anyway, I saw Plymouth rock, which... well... just don't get your hopes up. It was sunny out, so I wore a wide brimmed hat and sunglasses as well as a long sleeved button down. Gotta stay covered up.
Well that's all for now, I guess I'll let you know more once I know it myself.
Friday, July 13, 2012
Day 180
Today is Friday, July 13th. In three days at 9:32am EDT 43 years ago, Apollo 11 blasted off from Florida. It's pretty exciting.
Seriously, people in the '60s decided to send three men in a small box to the moon where they would walk around, get back into the box, and come back home. If that's not the coolest thing we've done since creating an exponentially growing extremely destructive culture bent on destroying the environment that helped said culture thrive in the first place, I don't know what is.
But also, the significance of it being Friday the 13th in July, is that my official Day Zero was 6 months ago, on Friday the 13 in January. If we were to go back 6 months from now, last weekend I received two days of chemotherapy. Monday, Tuesday, and Wednesday I received radiation to my entire body twice each day, and yesterday I received one. I got one bag of new cells (donor cells), but it wasn't enough. So today, I will get another bag of donor cells marking the transplant day, and tomorrow will be Day 1 of recovery.
I'm pretty excited to be here right now, and I was recently talking to Kym and Goldberry (separately) about changes I've gone through since October. I'd say the first change is that I no longer prefer wheat bread. I like white bread. Yeah, what of it?
The second thing is this: I hear a lot of people talking about how going through serious events like this can make a person "appreciate life" more than they used to. It seems to be written and repeated more by those who haven't gone though things more so than by those who have. How do I feel about life now?
I think the main thing is, I'm a lot less tolerant of bullshit.
Hoping to see Nittany's and Gator's older brother this weekend. He'll be in Plymouth for a wedding and I've been cleared by Dr. Grant to go see him for a few hours. I look forward to it!
Also, next Wednesday I have a checkup so I'll be sure to report back on that as well.
Seriously, people in the '60s decided to send three men in a small box to the moon where they would walk around, get back into the box, and come back home. If that's not the coolest thing we've done since creating an exponentially growing extremely destructive culture bent on destroying the environment that helped said culture thrive in the first place, I don't know what is.
But also, the significance of it being Friday the 13th in July, is that my official Day Zero was 6 months ago, on Friday the 13 in January. If we were to go back 6 months from now, last weekend I received two days of chemotherapy. Monday, Tuesday, and Wednesday I received radiation to my entire body twice each day, and yesterday I received one. I got one bag of new cells (donor cells), but it wasn't enough. So today, I will get another bag of donor cells marking the transplant day, and tomorrow will be Day 1 of recovery.
I'm pretty excited to be here right now, and I was recently talking to Kym and Goldberry (separately) about changes I've gone through since October. I'd say the first change is that I no longer prefer wheat bread. I like white bread. Yeah, what of it?
The second thing is this: I hear a lot of people talking about how going through serious events like this can make a person "appreciate life" more than they used to. It seems to be written and repeated more by those who haven't gone though things more so than by those who have. How do I feel about life now?
I think the main thing is, I'm a lot less tolerant of bullshit.
Hoping to see Nittany's and Gator's older brother this weekend. He'll be in Plymouth for a wedding and I've been cleared by Dr. Grant to go see him for a few hours. I look forward to it!
Also, next Wednesday I have a checkup so I'll be sure to report back on that as well.
Wednesday, July 11, 2012
Recovery Update
Today I was able to do 100 pushups. Not all at once, but still, that's a lot of pushups. Especially considering that the day I left the hospital I could do only two pushups before my arms gave out. Soooo, go me!
I also went for a .3 mile jog. Still have yet to make it even close to a mile. It's frustrating, but so long as my hematocrit (percentage of red blood cells by volume to the rest of the blood) remains low, like 29-32 instead of 42-46, exercise requiring strong respiratory and cardiovascular systems will suffer. Just have to keep on truckin' and wait it out. My goal is to be able to run a 50k before January of 2014. It's incredibly ambitious, I know, and maybe impossible, but that is my goal. I'll keep you all updated!
I also went for a .3 mile jog. Still have yet to make it even close to a mile. It's frustrating, but so long as my hematocrit (percentage of red blood cells by volume to the rest of the blood) remains low, like 29-32 instead of 42-46, exercise requiring strong respiratory and cardiovascular systems will suffer. Just have to keep on truckin' and wait it out. My goal is to be able to run a 50k before January of 2014. It's incredibly ambitious, I know, and maybe impossible, but that is my goal. I'll keep you all updated!
Sunday, July 8, 2012
Stardate 270
Hi. My name is Bulwyf. (Hi, Bulwyf!) I've been sober for 277 days today.
I've also been in Cambridge for 9 months today. 9 months and a few hours ago, shit hit the largest fan I have ever had the pleasure of experiencing shit hitting.
As a special post, I've decided to write about a few common misconceptions about Boston, Massachusetts. Enjoy.
Misconception #1:
Boston is a town of thatched roofs and cobblestone streets.
Truth: Boston is actually very advanced in their building abilities. While it remains true that many sidewalks in Cambridge are still built of either cobblestone or something resembling it, the roads themselves are indeed paved. The ideas of steel and glass, originating of course in Quebec in the late 1830s, have also made their way into town. You will find a surprising amount of well built structures.
Misconception #2:
Redcoats still patrol the streets.
Truth: In 9 months, I have yet to see a redcoat anywhere.
Misconception #3:
As Boston is a city, you will not find turkeys roaming the streets. They are flightless stupid birds that live "out there," beyond the outskirts.
Truth: It is not uncommon to see a Turkey or a few meandering around the streets, paying little attention to passers-by. Also, wild turkeys are smart, like velociraptors. Scary part? They can fly too.
Misconception #4:
The Charles river is longer than the Hudson.
Truth: No. It is not.
Misconception #5:
Boston is not as good as NYC.
Truth: NYC is not as good as Boston.
Misconception #6:
There is very little shared public space in Boston.
Truth: There is a ton of public space here. Remember that arboretum? Public, no fee to enter. The entire Charles River is cushioned by a layer of nice public green space on each side, providing miles and miles of walking/running/biking paths as it twists around the city. I do enjoy it.
The last drink I had was at Nittany's house, ≈ 277 days ago. I drank a Yuengling Lager.
I've also been in Cambridge for 9 months today. 9 months and a few hours ago, shit hit the largest fan I have ever had the pleasure of experiencing shit hitting.
As a special post, I've decided to write about a few common misconceptions about Boston, Massachusetts. Enjoy.
Misconception #1:
Boston is a town of thatched roofs and cobblestone streets.
Truth: Boston is actually very advanced in their building abilities. While it remains true that many sidewalks in Cambridge are still built of either cobblestone or something resembling it, the roads themselves are indeed paved. The ideas of steel and glass, originating of course in Quebec in the late 1830s, have also made their way into town. You will find a surprising amount of well built structures.
Misconception #2:
Redcoats still patrol the streets.
Truth: In 9 months, I have yet to see a redcoat anywhere.
Misconception #3:
As Boston is a city, you will not find turkeys roaming the streets. They are flightless stupid birds that live "out there," beyond the outskirts.
Truth: It is not uncommon to see a Turkey or a few meandering around the streets, paying little attention to passers-by. Also, wild turkeys are smart, like velociraptors. Scary part? They can fly too.
Misconception #4:
The Charles river is longer than the Hudson.
Truth: No. It is not.
Misconception #5:
Boston is not as good as NYC.
Truth: NYC is not as good as Boston.
Misconception #6:
There is very little shared public space in Boston.
Truth: There is a ton of public space here. Remember that arboretum? Public, no fee to enter. The entire Charles River is cushioned by a layer of nice public green space on each side, providing miles and miles of walking/running/biking paths as it twists around the city. I do enjoy it.
The last drink I had was at Nittany's house, ≈ 277 days ago. I drank a Yuengling Lager.
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