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."

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.


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?

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."


"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



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:


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.

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.

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!

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.

Friday, July 6, 2012

A Tale of Two Cities

Last Wednesday I had one of my normal appointments with my oncologist, Dr. Grant. These began as once a week immediately after discharge from the hospital but now are more spread out, usually once every 3-4 weeks. In late May I had a CT scan to try and determine if the fungal infection I acquired during my first round of chemotherapy, and the one responsible for me needing to drive back to Boston with Kym and Fumos just days before my sister's wedding due to never-ending fevers, and the one responsible for making me take three almond-shaped difficult to swallow pills for 7 months had finally cleared.

Well wouldn't you know? It was inconclusive.


So last Wednesday I woke up to find myself faced with another CT scan. I used to fear the amount of radiation you get from an X-Ray. Then I got 7 20-minute doses of enough radiation to knock out hundreds of thousands of cells that I'd been unconsciously building for the last quarter-century. Now, a CT scan doesn't seem so bad. I was scheduled for this new one and then scheduled to meet with an infectious disease doctor. I'll call him Dr. McFly.

But this particular morning I woke up to a text message from a good friend. One who I honestly owe my life to. When Kym first discovered in early October 2011 that I had large lymph nodes in my armpits (and thus destroying the "clogged duct" hypothesis my PCP had come up with hours earlier) I admit I was a little freaked out, and a little excited too. Anyone who's read this blog since I started writing or has gone back to read stuff will find that for someone who majored in Film and Video, I have a decent understanding of what is going on with regards to my immune system. I've always found it fascinating (well, since I was 9... 4th grade science class.. you know how it is) and I've spent a good deal of my free time doing my own research, taking classes, and just reading a ton of stuff. Well, I was faced with my immune system acting funny and I was totally into it at the time.

That night, I talked to my friend online and as she worked at a PCP's office in NYC, she set me up with an appointment that very Monday (we were talking very late on a Saturday night).

Anyway, I just want you all to know it's not every day you can be so thankful to someone outside of your family due to the fact that you're still alive. She's a great person, and I'll call her Goldberry.

Lord of the Rings wooooooooo!

Anyway, Goldberry suffers from something much worse than acute monocytic leukemia. Though not life threatening (to my knowledge, with modern medicine), her disease is awful and will never go away on its own. Yes, I could go into my next appointment and find the cancer is back, that cancer might not respond to a new round of chemo, and I am terrifyingly aware that it could kill me. However, I find myself lucky that the one cancer that decided to play games with my heart (I told it to quit!) is in fact curable.

My point is, that on top of the fact that she got me to a doctor so quickly, she has also opened up to me a lot in the past few months, and I've opened up a lot to her. We talk a lot about medicine and our experiences dealing with a lot of needles and bags of goo.

"Getting a bunch of infusions in the oncology suite at Weill Cornell. It's surprisingly crowded. Everyone is nice but man, bodies suck."

Today happened to be the first day since my inpatient stay that I'd be getting an infusion.

Around 1:00pm I headed over to the  hospital. I needed to get a blood draw first, then a CT scan, then grab some food, then meet with Dr.s Grant and McFly, then get an infusion of IgG.

Quick background. IgG (Immunoglobulin G) is an antibody in your blood secreted by plasma cells (lymphoid line, mature in the bone marrow) mainly to fight viral infection. However they also help with fighting bacteria, parasites, and neutralizing toxins. Of the five types of Ig, (E, A, G, D, M), G is the most common, representing an overwhelming 75% of all of your antibodies. They are very large Y-shaped molecules that can can attach to antigens with one end and talk to other immune cells with the other.

I first check in to the radiology desk. Fill out a quick form with my medications and allergies and text Goldberry back.

"They have weekly meditation sessions, an artist in residence, and just gave me a milkshake. I'd rather be anywhere else, but <3 Weill Cornell."

"Well if we were truly made in god's image, it's no wonder he went off on his own... he'd be the ass end of Olympus for sure."

"Ha. He gave us his only son, Broclergaard! What more do you want! Hahaha"

"Haha well I guess I can't argue with that... Glad you like your milkshake :)"

Some time around now, I was called back to a quick pow-wow with a radiologist. We went through the procedure and talked about my medications. There was a bit of confusion, because I didn't need any radioactive contrast (goo) for the CT scan, but I still needed to keep my IV in after the blood draw as I was scheduled for the IgG later. We got it figured out and I went back for the blood draw.

Mmm. Blood is so tasty and good. That's what mosquitoes say... if they could talk. Sadly they can't and I am left to assume. Did you know that only females suck blood? And on top of that, they don't even eat it. They feed it to their young. I don't actually know if that's true so for all you high school students doing a 3-5pg research paper on mosquitoes with a minimum of 5 sources, one of which has to be printed material, please do not use me as a source for mosquito habits. I recommend Wikipedia and a book called "Mosquitoes and Me: A Memoir of Sir William Clay." But seriously.. don't use either one of those either.

Another text from Goldberry.

"Ha. Was feeling better avoiding dairy and gluten, but that's shot today. Milkshake delicious but feeling ugh. Worth it!"

"Then I am both happy and sad for you! I'll be a hospital guest for a few hours yet... CT scan, dr. appt, infusion... First infusion since February."

I headed back for my CT scan. If you've never gotten a CT scan, think Apollo 13 + really smart people.

Ok... so.. just think Apollo 13.

It kinda feels like you're in a space ship. You enter a Future!-looking room and sit on a white bed. They put a pillow under your knees to make it more comfortable, and then send you through a massive rotating machine. The computer lady-voice speaks up...

"Take a deep breath... and hold it"


"You may breathe normally."

This repeats a few times and I'm no my way! I'm hungry and ready for lunch, so I head to the third floor for a quick meal. Only thing is, my diet is fairly limited when it comes to prepared food. I shouldn't eat anything that's been sitting out. I definitely can't eat something from the food-bar. I can't trust the deli.. those are off limits until at least January 2013. I walk in circles looking for something both tasty and good, as well as safe.

"Aha!" you say, "you have an IV line in! You can drink your own blood!"

But sadly the phrase "Mmm, blood is tasty and good" only applies to my speculation about mosquito larva.

But, to the east! There is the pizza man! He's taken a cheese pizza right out of the oven and set it down. I quickly rush over and grab the first slice before and normal people can soil it for me. I also ask that a fellow behind the counter deep fry some potato slices for me in Arby's fashion. An angry man yelled at the fellow moments before so I was extra friendly.

Soon I had my pizza and curly fry meal ready to go. It was delicious. Kym met me there.

Let us skip ahead a bit.

I found myself face to face with Dr. Grant. We went over meds. My blood pressure was something like 105 over 60, so he took me off the amlodipine I was on. One med down. He looked in my ears and in my eyes. Listened to my chest and my heart. He checked my skin and my mouth and my blood results looked fine (except for a low IgG count). We talked a bit about medical stuff I cannot remember, and then he was off to look for Dr. McFly. They both came back and talked about my CT scan. It looked clear, and the anomaly they noticed last time that resulted in it being inconclusive seemed to have resolved itself. The result?

I am no longer taking fluconozole. And it feels really good. You ever feel really good before? That's how it felt. Really good.

Ha. I'm smiling now even writing about it again.

No more stupid almond shaped pills for me! Bulwyf is above such pills when he is not infected with something such pills can prevent and destroy!

Now that the appt was over, I had but one more hour to give. The IgG infusion. Well, I was mistaken and it turned out to be longer than an hour. But they pre-medicated me with Tylenol and benadryl and that put me into a light slumber pretty quickly.

"Yay! I got potassium, magnesium, and iron. Go cyborgs!"


I almost needed an infusion of magnesium a few months ago. One of my meds, tacrolimus (found from a fungus that grows in Japanese soil, go Science!) eats up magnesium like mad and so I am on mag pills. So far, 2 400mg pills 4 times a day seems to be enough to prevent an infusion. I felt especially bad for the potassium infusion. I got a lot of those in the hospital, but most were shot directly into my heart. The ones that go into your veins hurt worse than a... I don't know, it's late, but they hurt a lot. The potassium just burns as it goes in and they usually need to dilute it with saline.

After my infusion of IgG, Kym and I headed back to the apt to see Bill. Both Kym and Bill are doing quite well and I am happy to be here with them.

Has anyone actually made it this far? I feel like I drifted with my thoughts a few times...