Saturday, October 29, 2011


Fevers are out of control again, and I'm feeling pretty bad. May or may not post tomorrow.

It's Gameday in Boston

Watching a great lineup of games this weekend. I'm feeling a bit rough this morning but I'm not exactly sure why. I got a reaction to one of my antibiotics this week, so we're trying something new now.

Reaction to the cefepime. 

Replaced with imipenem.

Slept for a solid 12 hours last night and got some platelets this morning. Having a platelet count of 6 when normal is 150-450 can start to cause trouble. I lightly bumped my hand on something yesterday and it bruised. We're getting pretty far away from my chemo, so I'm hoping if the bone marrow biopsy comes back negative I'll start making my own platelets soon.

Friday, October 28, 2011

Are the Flowers Blooming in Houston?

"Uh, that's a negative, Jim. I don't have the measles."

I love movies, including Apollo 13. It's pretty rockin'. Many of you may notice a movie quote casually slipped in here and there as I write. I try to keep them subtle, but they're there. This one is not very subtle.

The point of this quote is to remind you all that Ken Mattingly was thrown off of the prime crew of Apollo 13 in early April, 1970 due to his exposure to the measles. He had never had them before, and thus did not have any memory cells to defend against the disease. He ended up not coming down with the measles during that time.

"That's odd." You may say to yourself. "I've never had the measles either!"

Well, we're fortunate enough to live in the future now, and at birth we get something called a vaccine to the measles. It's called the MMR vaccine and also trains your lymphocytes to remember the mumps and rubella. It's a wonder of Science!

Here's how it works.

In fact, here is how most vaccines work.

You are given a shot, and this shot either has a neutered version of the virus or a collection of broken virus parts. The body recognizes this new material as foreign and mounts an immune response (this is why some of you feel a bit under the weather after a flu vaccine, without ever getting a full blown case of the flu). The coolest part is that there are cells called B and T cells. Both of these cells called lymphocytes are born in the marrow from those hematopoietic stem cells I talked about before. The difference is that B cells mature in the (b)one marrot and the T cells mature in the (t)hymus. The B cells are responsible for creating antibodies, small little dudes who latch on to a virus and neutralize it and help with getting rid of it. The T cells are broken into Helper T cells and Killer T cells. Helper T cells initiate an immune response and activate the B cells (among other things). Killer T cells hunt down body cells infected by the virus and kindly ask that cell to commit suicide (gotta keep that LDH down).

Both B and T cells create memory cells that live for decades. If you're exposed to that virus again, your immune system discards it before you even feel anything. It's quite good at this.

But that's the point of a vaccine. You create memory lymphocytes.

Do you know where the word vaccine comes from? Well, the first vaccine was discovered because some doctor/scientist noticed that milk maids were not getting smallpox. More specifically, he found that those who came down with a case of cowpox would not get smallpox. He then purposefully infected people with the much more docile cowpox and found that the cases of the more deadly smallpox began to decline. That's pretty sweet.

What's more sweet? The virus that causes cowpox is called the vaccinia virus.

That feeling you have right now is your mind being blown.

Anyway, what does this all have to do with leukemia? After my bone marrow transplant, I need to be re-vaccinated against all of those things I got vaccinated for as a child. MMR, Hep A, Hep B, etc. Most of these vaccines are scheduled for about a year after the transplant, and the MMR usually takes place about 2 years after. So for 2 years, I'll be like Ken Mattingly. I could get the measles.

"But wait!" you say with baited breath. You have this all figured out. "You don't actually need to worry because now that everyone is vaccinated, the chance of contracting measles from someone is so low."

Aha! You've got it! No?

You're almost right. I am glad that many people have gotten the MMR vaccine. That will help me in my 2 years of susceptibility. But there is a problem, and her name is Jenny McCarthy.

Jenny McCarthy read a study published in the late 1990's linking the MMR vaccine to autism. This study has since been repeatedly disproven. Combine that with the conflicts of interest by those conducting the study, and the fact that the man in charge, Andrew Wakefield, eventually had his medical license revoked due to the study, and it starts to lose a bit of that water that it never had. At this point, there are zero people in the scientific community convinced of this link. At this point, there are zero documented cases proving this link.

Doesn't matter. This McCarthy lady decided that science doesn't matter and has spent a good amount of time trying to scare parents into giving their children the measles.

News Flash: MMR vaccines don't cause autism.

What they do do, is prevent children from getting the measles, mumps, and rubella. They also prevent me from getting those diseases.

But now, due to a fraudulent study and stupid people who don't trust the idea of international peer review, we have a generation of children who can now give me the measles.

That's total crap.

I admit before this I never gave it much thought or worry. Oh how your perspective changes when you get leukemia. I'm all for personal freedom and I don't think the MMR vaccine should be law. But I think if you don't give it to your child you're a dumbass.

Yeah, you. You know who you are.

Let me just go ahead and thank all of you for making the next 2 years of my life interesting.

Also, as of a month ago, a presidential candidate for the United States of America went on national TV and defended the baseless idea of the vaccine-autism link.

I don't mean to get political, but this pisses me off and you can consider this my personal plea to not vote for Michele Bachmann in... well... any election. Ever. She should not represent anyone, let alone everyone.

Jenny McCarthy's Greatest Achievement

Who is Simon and Garfunkel?

I'm.... I'm speechless.

I've just been exposed to something in our culture I was unaware existed. I just met someone who has never heard of the name "Simon and Garfunkel."

"How's your night going?"

"Oh pretty well. I've been listening to Simon and Garfunkel all night so it's pretty hard to be in a bad mood."


"Simon and... Simon and Garfunkel..."

"Oh I've never heard of them."

"You... what? No."

She smiles uncomfortably for a moment.

"Ok you're joshing now."

"No really. I've never heard of them."

"Wait... umm... Okay I'm just having a hard time with this. Really?"




"You've heard of the Beatles?"


"Pink Floyd? Bruce Springsteen?"


"But never... but Simon and Garfunkel are like on the same level as them. Part of our culture. Here..."

I play Sound of Silence.

No dice.

I got it! I play Mrs. Robinson. Success! She recognizes that song. She also recognizes Cecilia. Not Scarborough Fair though. But at least she has heard their music before.

"You've seen the movie, 'The Graduate'... with Dustin Hoffman?"

Here eyes tell all. She's not even heard of that movie.

I just... I'm just astounded. I really didn't think people like that existed. Should I be this confused? Granted there are a lot of modern hip things I know little of. My knowledge of "Jersey Shore" is only what I've seen on South Park. I know the name "The Kardashians" but I have no idea who or what they are or how many of them currently exist.

But here's the thing. Simon and Garfunkel have been part of our culture for over 40 years, helping shape this country. I don't expect everyone to love the same music I love, not by a long shot. But I don't understand how you can make it into your mid twenties and not have even heard the name "Simon and Garfunkel."

I've been told by multiple people during different stages of my life and for different reasons, that I should have grown up in the 70s. Some really amazing things happened then and I definitely connect with that music better than with Justin Bieber.

I'm having an identity crisis right now. What was that? You don't know who Simon and Garfunkel are.


This isn't even something I can pin on this new generation of kids always causing trouble. This is someone born in the 80s and raised in America.

With absolutely no knowledge of...

I'm... I'm honestly, very genuinely.. just out of words. I can't express what I'm feeling right now because I've never in my life felt it before. It's a 100% new feeling.

Maybe the problem is with me. Maybe I'm expecting too much from my generation. You know, having a sliver of understanding of the evolution of music throughout possibly the greatest few decades.

C'mon! That's not even fair!

Simon and Garfunkel is as American as apple pie, Walter Cronkite, and the polka.

Now. For those of you who might be in the same boat as this girl. Best not speak up. Better to just educate yourself. Here is your first lesson:

Also, for those of you mathematicians out there who saw that I intended to goto bed a few hours ago, let me just tell you that sometimes things happen in life that are so out of left field that you can't sleep and instead must write a blog post about them. 

Spoiler alert. This is one of those times.

Thursday, October 27, 2011


I slept all day today. It was crazy. Every few days it seems like my body just doesn't feel like doing much other than sleeping, and that was the case today.

I had a pretty intense night sweat last night and had to change my sheets and clothes, but other than that I'd say today was pretty uneventful.

Off to bed now... still tired.

Wednesday, October 26, 2011

Update D+20

Today marks 20 days since being diagnosed with Acute Myelomonocytic Leukemia.

Gosh, a lot's happened since then.

I moved to a new city for treatment. I got 168 hours of chemotherapy. My lymph nodes shrunk from the size of apricots to the size of lymph nodes. Someone decided it was a good idea to jam a needle into my hip. Twice. I've had to change my sheets almost every night at least once since coming here due to night sweats. Gaddafi was killed. My hospital room somehow transformed into a dorm room (Thanks Kym!).

Oh and somewhere along the line they put me to sleep and installed a blood spigot into my chest. I now no longer look like a heroin addict (I swear officer, it's medicinal!).

I think it's about time for one of those meaty updates so ya'll know where I stand medically.

The first round of chemo, called "Induction", the 168 hours, is over. I should expect to start losing my hair soon. It was a little rough, as I didn't eat for about 4 days and had a top fever of 103.7. My white blood cell count plummeted during this time, and some of the chemicals in my blood went haywire.

Example: LDH is supposed to be 135-225. Mine got up to 12,600.

That's what happens when you commit genocide inside of the bone marrow.

Since the chemo ended, my white count has stayed low and everything else is returning to normal. Now I'm just waiting for the results of:

My bone marrow biopsy! Taken yesterday around 3:30pm, the doctors are hoping to find no trace of the cancer cells. If they find cancer, I get another 120 hours of chemo before they let my white count recover to normal. If they don't find cancer, then we're going to let my white count return to normal over the next 2 weeks or so. At that point, I get another biopsy, and if that one is also clean, I'm considered in "remission."

Remission = my white count is normal and they can't find the cancer.

Remission means I get to leave the hospital for a little while and live as an outpatient instead of an inpatient. I'll be able to fight infection just like everyone else, but I'll be in a holding pattern as we look for a bone marrow donor. Right now, we're still waiting on the results of my other two siblings, Fumos and Jackie, to see if they are a match. If they are, we're going to do the transplant ASAP, hopefully December. If they are not a match, we'll turn to the international registry. That will take a bit more time, so during that time I'll probably be in for another round or two of chemo to keep me in remission and ready for a transplant.

The transplant process will be interesting, but here are a few things just so everyone is clear:

They will not be taking the marrow out of the donor's bone and inserting into mine. The donor will essentially give blood for a few hours as they use a machine to take out the hematopoietic stem cells. Then I sit down and over 30 minutes to an hour those cells flow into me. The cells are trained to find and inhabit my osseous tissue cavities (spaces in bone where marrow lives). There, they will grow new marrow and my new immune system.

What happens to my old one? Well, we'll wipe it out pretty good with an intense round of chemo before the transplant. After the transplant, the new marrow will hunt down and destroy my old immune system.

They will betray and murder my old immune system. But they will save me.

This part still makes me a little sad. I can be very sentimental about things and I don't like change. The fact that my T cells and B cells and healthy macrophages and megakaryocytes and mast cells and basophils and eosinophils and erythrocytes and thrombocytes and neutrophils all need to die because some little dickhead monocyte decided to have a break in the 10/11 chromosome makes me quite angry.

Here's me giving a middle finger to that little fucker. It's your fault this is all happening. In fact. I hope that first one is still alive. I want it to watch as everything it's ever known is destoryed because of it. I want it to be like Saddam and Gaddafi, found in a hole after all is said and done. I want it to cry as my new marrow unceremoniously drags it through the streets by its ankel. Yeah, just one ankel. The other gets to just bounce along until it dislocates from the hip.

Eh, enough of me ranting. I think we can all agree we don't like cancer very much.

Anyway, I hope this gives everyone else a little better of an idea of what I'm looking at.

The good news is that I am responding well to everything, and my kidney function looks great!

That was Fun

While it lasted...

It looks like I'm asymmetrical again. For a while before diagnosis and treatment, the lymph nodes in my head made me look all off balance and such. Then I got the chemo and my head was back to normal!

Well, this time at least it isn't the lymph nodes. My facial hair is starting to come out and it looks kinda funny.

The good news? It looks like I'll make my deadline of halloween for losing all of my hair. I had really intended on going as Powder this year and was afraid it wasn't going to happen.

Bulwyf: 1

Time: 0

Good Moods

I've decided it's impossible to be in a bad mood after listening to the River of Dreams by Billy Joel.

Man that song just pumps me up every time.

I Had a Dream

I was outside in the forest and it was awesome. While outside, I decided to explore some old ruins. I walked up 9 flights of steps and was excited about the exercise, but was worried about my low platelets. At the top of the old building, I found a homeless fellow living in an odd tent type thing.

Anyway, later I found a tick on me. I decided to check for more and found over 1000 ticks crawling all over me. It was crazy but non of them bit me. I just brushed them off into a pile on the floor of the ruins.

The point to all of this is that according to Wikipedia, you dream during REM sleep. The doctors cut down on my fluids a little bit so I'm now waking every 2 hours or so instead of every hour.

Yesterday was crazy though. I slept until 11:30am. When I woke up I took a shower and ate some pancakes (taking a shower is always a process as I have to wait until I am between anti-biotics, then they need to waterproof my blood spigot). After my meal, I was still tired so I slept until 3. I woke up to a doctor walking in my room. He will be my transplant doctor so I will call him Dr. Grant. I talked to Dr. Grant for a good half hour about the next few months when Onk walked in. Time for my bone marrow biopsy! So I got some oxycodone and some ativan and got the biopsy.

The biopsy did not go as smoothly as the first one. Kym came and held my hand which was nice, but I was a lot more nervous and my whole body shook like the NYC earthquake of 2011. That last part was a joke because the NYC earthquake of 2011 felt more like Atlas rocking us to sleep.

But this biopsy was kinda crazy.... they gave me an extra half milligram of ativan to try and calm my nerves. Either it kicked in at the end or I was just happy it was over. Either way, I then passed out until around 6pm. Then I got some dinner (mac 'n cheese with hot dog) and watched some TV until falling asleep around 1130pm. I woke up a few times throughout the day as my anti-biotics were changed or they needed to weigh me or take vitals. I've still been good with the temperatures, but I lost a good 10 pounds during my first round of chemo.

Well let's hope we don't have to do that again.

Monday, October 24, 2011


Bulwyf tested.

Doctor approved.

I get the results of my first round later this week.

This Weekend

Just a quick update so you all know how I'm doing.

I'm still getting vitals taken every 4 hours, and I am happy to report my temperature has been down. I have not gotten blood drawn from a needle in my arm for a few days and it feels great. Also, the blood cultures that were all drawn during my high fever periods have all come back negative (they have a month to grow goo, so we'll see how that goes). I was hoping to contribute to Science, but my heart failed the test to join the study. I've been told my heart is healthy as a clam, but they just have very specific requirements for the drug study.

My brother, Fumos, was here this weekend. It was fun hanging out with him and Bill and Kym and my parents. We had a football party here Saturday night for the game.

Tomorrow at 3:00pm I have my second bone marrow biopsy. Depending on the results of that, I may need an additional 5 day drip of chemo.

Here's me hoping I don't need that. I didn't smell very good after not showering for 7 days last time.

Rapid Eye Movement

I find I'm quite tired throughout the day, and last night slept for a good 11 hours.

The weird thing is that I'm not on chemo. I ended that a while ago. I suppose it could be the anti-biotics, or maybe the fact that I'm partially anemic. There are a lot of things not quite right with my body right now.

I'm also getting a pretty continuous IV drip of fluids to help take down my LDH (which is down from 12,600 to 1400... still well above the 135-225 ideal range). This makes me wake up nearly every hour during the night to use the bathroom.

Now, I don't know much about REM sleep, but I heard/made up that you need REM sleep in order to feel actually refreshed. Well I've not been feeling refreshed in the mornings when I wake up. Therefore, I've decided that I'm not getting enough REM sleep because I'm waking up before entering that sleep cycle. This makes me frustrated, but the good news is that the doctors are lowering my fluid intake. Hopefully tonight I can get two(2) hours of sleep at a time.

In other news, I'm watching "It's Always Sunny in Philadelphia" for the first time and I must admit that it's a humourous show. I also watched "Inception" for the 50th time and it was still awesome.

There are enough plot holes in "Inception" to sink the Titanic. But man, that is a fun movie.

My favorite part is when the music goes BBBBBRRRRROOOOOOAAAAAAMMMMMMM!

Saturday, October 22, 2011

It's Gameday in Boston

Watching College Gameday in my hospital bed while listening to Simon and Garfunkel. Just ate a tasty breakfast of corn flakes and vanilla iced cream. My brother, Periculosum Fumos (Fumos for short), is coming in today via airplane. We're all planning on tailgating here before the game tonight. I have to thank some people (you know who you are!) who got me a gift as to make me able to watch said game. I'm pretty fired up about today.

Boy's Night In

Bill stayed over last night and I taught him how to play Heroes of Might and Magic III. We didn't get the whole way through the game so I saved it as "Bill and Bulwyf's Excellent Adventure."

It's such a good game.

We also watched The Hunt for Red October and The Departed. It was a pretty good night.

Big day tomorrow. I'll try to write if I can, but the blog takes a back seat to Science and football.


Not that I've done a fantastic job of keeping up with this in the past few days. I promise though there will be a few more meaty posts soon!

Thursday, October 20, 2011


I enjoy writing music, but it isn't something I do very often. I need the mood to strike me or for my brother to ask nicely. Well just now the mood has struck me, so I think for the next little while I will be writing some music. I'll call it my Get-Well-Soon song.

Good Morning!

At least it feels like morning. Waking up every hour last night for different reasons including bathroom, vitals, and anti-biotics changes. Then around 0500 they decided that they were worried about my bone marrow biopsy suddenly bleeding again, so they wanted to give me platelets.

But because of my plasma-hives encounter a few days ago, I've been flagged for all blood products.

So I get 25cc's of benadryl at 0530. 7 hours later I wake up and eat breakfast. So although it's just about 1pm, I've only recently woken up, and my day has yet to get started.

Quick updates:

I opted to help science by including myself in a new study drug, but I failed my required EKG test so we're putting it off until tomorrow or saturday.

My room looks awesome because Kym has been decorating it with halloween and pictures.

Heroes of Might and Magic III is still one of the best games ever.

I've been getting many cards from a lot of people and can definitely feel the love, so thank you everybody!

Wednesday, October 19, 2011

The Toxins are Finished!

Chemo round one is finished.

I am not attached to a mobile chemo tower.

I can take a shower for the first time in 168 hours.

See you all on the flip side.


And I'm not talking about the Italian B. M. T. from Subway (Eat Fresh!™)

BMT= Bone marrow transplant. And that seems to be the final hurdle.

I just had a meeting with Onk, and her Fellow, Greek. Onk and Greek have determined (based on my bone marrow biopsy from a week or so ago) that the best course of action to make sure I'm totally cured of this ailment is a complete transplant of the marrow.

This is good news that I welcome. It's nice to have a clear path ahead and I'm glad we've found it so quickly. Kym is not a match, but my other two siblings could be. If they are not, we will try our luck on the international registry. With the transplant, we'll basically chemo away all of my hematopoietic stem cells, and replace them with the donor's. Over the following few months, the blood that was mine will be replaced by the blood that is not.

Which is why this is also sad news that I can't say excites me. This has been my blood from birth. When I got my MMR vaccine, my blood responded. When I got the flu, my CD8+ killer T cells came to the call and saved my life. How many times have these cells not only saved my life, but then stuck around as memory B and T cells, ready to take up the fight before the new antigen even got a chance to get a foothold.

It makes me sad because as of tonight I may be celebrating our last victory together. Joining hands as we watch the last of the cancerous monocytes float away. There may be a few more times we get to join the fight together. I might get an infection or a cut before my transplant. But everything I have to fight will feel like our last together. And it is sad.

My blood and I have been together since before I was born. We grew together with difference vaccines. We learned with each other as we camped and played outdoors. My blood learned that poison ivy was nothing to fear, and never gave me any trouble with pollen or animals. I've run ultramarathons and hiked mountains over 14,000 feet. How could I do that without strong blood? I got the flu, I got pneumonia, I got mono... and time after time after time who comes to the rescue? The blood I was born with.

I can't really say what will come of the transplant, but it's honestly much more scary than anything thus far. I don't want things to change. I hate change. Anyone who knows me knows I don't like change on principle. I'll have to rebuild memory, get revaccinated, learn a new set of allergies. In a sense I'll feel like a newborn, and if that isn't terrifying, I'm not sure what is.

I've spent 24 years on the planet understanding life in a certain way. When this is all over, I might continue on as if nothing happened.

Or I might be completely different.

Only time will tell.

Now, back to video games to distract me from reality. I've still got a few more weeks at least to spend with my blood and if I can't go hiking, camping, or running, I may as well play some Heroes of Might and Magic 3.

Bulwyf out.


I'ma go play some video games. Will update when something important happens.

Bulwyf out.

The Great Monocytic Purge

D+13 and we're there. The Cover Song.

The Great Monocytic Purge.

Has a bit of a ring to it, wouldn't you say?

Over the past 7 days, I and the doctors here have been slowly dripping toxic chemicals directly into my blood, specifically to target those fast growing monoblasts, young immature monocytes stuck in some twilight zone where they never grow up but they still divide and spread. This week, millions of these cells have witnessed and experienced unceremonious death, as the rivers and streams filled with a deadly poison. Some of them were even scared, I am sure. They would have run for the hills.

They would not have gotten far. The air they breathe, the rain that falls... everything around them wreaked of their doom, and they knew it! They could smell their time quickly fading into nothingness.

A Holocaust in my bone marrow. Don't kid yourselves, folks, that's exactly what it is. And it's exactly what I wanted it to be.

The Great Purge.

During the Purge, the lactate dehydrogenase spiked to over 12,000 from a normal level of 135-225 due to all of the unchecked cell death. The monoblasts tried to snuff out my neutrophils and my megakareocytes and ultimately my platelets. And they damned near succeeded too. But what they didn't expect was that I would have Science on my side.

Faceless donors gave me plasma, and platelets, and blood. Generations of lab scientists gave me drugs to counter the kamikaze style "If I go, you're coming with me" mentality of these particularly sick monocytes. Doctors and nurses monitored me night and day and paid special attention to my needs. There were days 5, 6, 7 people would come in to my room one at a time and listen to my heart. Listen to my lungs. Check my biopsy site for infection. Every 4 hours someone comes in and checks my temperature, pulse, blood pressure, and blood oxygen level. They measure everything that went in and everything that went out. It's Science!

And Science works.

So here we are. A new dawn. A Red Dawn, as blood has been spilled by those who needed to leave. Those who are left must now clean up. They must rebuild. And they will, for they are smart cells, and healthy cells, and they know their role in the collective. Neutrophils do what they do so that every other cell can do what it does, and as long as that very idea does not break down their system keeps working. I keep working, and that's good for me. The fact is, I am a living being, but I am a giant walking collective, and there are many strong and brave wee little cells that work tirelessly every day to make sure I stay at my best so that they have a home.

They almost lost their home this time around, and don't kid yourself on this either. We still have a good 5 months to go, if things go well. We won the first battle. We lined them up and knocked them down. But we will work together to make sure we see this through to the end. By the time I finish this blog, my healthy cells and I will have formed a bond unlike any I ever thought possible.

We will fight.

And we will win.

Bleeker Street

Greetings all on this beautiful rainy morning!

I must say, there are few better ways to wake up to a raining morning than with Simon and Garfunkel's Bleeker Street playing on a nearby set of speakers. I'm listening to a compilation album of their hits, of which they have many. When I was living and working in NYC, I would wear these huge white headphones called HN-7506s. They have the same driver as the professional-favorite Sony MDR-7506s, but these are made by Remote Audio and the place the drive into helicopter cups to market them as "High Noise" (HN) headphones.

Let me tell you, they rock. I knew a few people who used them before I did, one of which was a former employer, Shoefly. He highly recommended them, and then I got a chance to use them on set a few months later and that solidified my decision.

It was a pretty solid decision. And the best part was that I could now ride the subways hither and thither while listening to soft music, not plugging my ears in annoyance any time a train came, or someone started talking loudly or asking for money. I wouldn't even have to turn up my volume when I got onto the 14th street L platform to block out the hacks banging some old pieces of garbage loudly thinking that it's ironic. In their stupid hats and their striped pants.

I'm a hipster hater. So there. I don't think any reasonable person can live in Williamsburg for 2 years and not begin to loathe the people who walk the streets below.

But my point is that listening to Simon and Garfunkel while commuting to and from work is the best way to keep one relaxed. It's hard to imagine something going wrong on a day when you listen to The 59th Street Bridge Song walking in the door.

And that's how today feels.

It's my last last day of cytarabim, the 168 hours of Chemotherapy. I have my appetite back and ate corn flakes for breakfast. This afternoon I'm meeting my medical team and hopefully talking about a plan for the next 5 months of treatment.

And the best part?

Once I'm disconnected from this mobile IV tower, I'm allowed to take my first shower in a week.

The answer to your next question is "Yes. I do smell like old feet wrapped in rubbery burnt bacon, but I won't after tonight around 8:00!"

I just popped on the 59th Street Bridge Song and I'm feelin' pretty groovy about today.

Tuesday, October 18, 2011

The Best Italian Sub I've Ever Had

Throughout my last semester in college, I had a lot of energy and momentum headed in the direction of New York City. Knowing myself that I would never make the conscious decision to ever move to a city on a whim, I used that momentum to it's fullest extent and found my first apartment in Greenpoint, Brooklyn less than a month after graduation.

It was a pretty terrible apartment, with some pretty amazing craigslist roommates, so I couldn't complain. I had my spot on the floor where I put my sleeping bag, and next to that sat my computer. At my head sat a tower of boxes with all of my stuff. In my 5 months there, I only once ever woke up from a cockroach crawling on me inside of said sleeping bag.

Like I said, not to bad for a first NYC apartment.

It was about 3 months after my first night that I landed my first unpaid internship. It was at a place near Times Square called Aethur Services. If there is one thing I can say about my time in NYC, it's that I've had luck on my side (spoiler alert, this may or may not be some ironic foreshadowing). I've had a few terrible gigs, but I've never in all my time had a terrible long term job. Quite the opposite. I have only mountains of positive things to say about any place I've worked in NYC long term, and I'm just so grateful to all of my current and former coworkers for that.

But this place in particular was my first great experience, albeit unpaid. The amount of stuff I learned there in 3 months far surpassed what I learned in four years of undergraduate school (and before people start knocking undergrad, that's kinda how it's supposed to be. You get the foundation from undergrad so you have the resources and abilities to pursue whatever specialty you desire). But I learned a ton and they helped me find work. In fact, this first long term job led to my following 2 long term paid jobs. It's the job that started it all.

So kinda like Star Wars Episode One, except it didn't suck.

Dammit, Lucas... You just... you used to be so good! You brought us the best filmmaking in years and then you brought us C-span.

I digress.

My point is, I did get a stipend every day for lunch. $7.00 every day I decided to work. That was $7.00 more than I was getting on days I sat on a floor playing video games, so I worked pretty often. It was a very fun job. Most days I went to Subway. But then one day I got an angry face from someone at work asking why I goto Subway when I have all of these other options in the heart of NYC.

"I like to eat fresh."

He looked at me, a bit stunned, but quickly recovered. He said, "Go downstairs to the corner stor and get an italian hero there."


"That's what they're called. You aren't in Cow Country anymore."

"I usually just call them hogies or submarine sandwiches."

"No. Ask for a hero or you're look like a dumbass."

Well wouldn't you know, he was right. I went downstairs and looked at the menu above their deli, and right there in black and white they gave you the option of a "roll" or "hero." It seemed a bit odd to be, but I was new to this town and everything seemed a bit odd to me. So I rolled with it by asking for a hero.

An Italian Hero.




Well I'll be damned if that wasn't the tastiest italian sandwich I've ever had. I got them very often after that. They cost $7.25 so I had to bring a quarter to work, but I was down with that.

I bring this up because I haven't been eating much recently, but tonight all I wanted was an italian hero from that corner store. I described exactly how it was made, and my mom ran out to subway for me. It wasn't exactly the same, not by a long shot, but man it was close enough and I woofed it down like a guy who hasn't been eating much recently.

Unfortunately, my stomach is small because of all of this, so I only had half a 6 inch, but it was exactly what I needed.

When I get back to NYC, the first thing I'm doing I plan on trying to get over there at some point and purchasing another one of their amazing subs.

For you NYC folk, the store in question is on 43rd and 8th, on the NW corner. They have flowers they sell along 43rd. Tell them Bulwyf sent you. You'll get a special price of $7.25, and it will be the best italian hero you've ever had.

Monday, October 17, 2011

Good News, Everyone

A well documented but oft overlooked fact about Leukemia.

I'm not contagious!

Chalk up a W on that front.

A Note on My Meds

So I realized today I am putting a ton of chemicals into my body, and somewhere along the line, someone figured out which each of them would do to a person without screwing up other things. They also figured out which ones you can mix and match and which ones you can't.

That's pretty amazing. So in a tribute to Science, I give you:


Vancomycin - IV anti-biotic focused towards fighting gram positive bacteria
Cefepime - IV anti-biotic focused towards fighting gram negative bacteria
Micafungin - IV anti-fungal
Tylenol - (as needed, 4 times daily) Pill fever reduction
Allopurinol - (once daily) Reduces uric acid in my system to avoid things like gout
Sevelamer (4x a day) - Binds to loose phosphates in my system to protect other organs during chemo
Vitamin K (as needed) - Clotting factor
Cytarabine (168 hours) - Chemotherapy
Idarubicin - (1x daily, first three days) IV push chemotherapy
Zofran - (as needed) IV antinausea
Compazine (as needed) - pill antinausea
Ativan (as needed) - IV push anti-nausea
Lasix (as needed) - IV push diuretic

Chlorhexidine (2x daily) - Industrial strength minty fresh mouthwash
Nystatin, with cherry flavour (3-4x daily) Antifungal mouthwash... I get to swallow this one.

Donated products:
Blood (strait up) - Gives me red blood cells, raising my HTC levels to hopefully above 24.0.
Plasma (on the rocks) - Gives me natural clotting factors
Platelets (Shaken, not stirred*) - Allows those clotting factors to actually do something... kinda worthless without platelets

Well that seems to be about it for now. I'm sure as time goes on this list will ebb and flow. But as a snapshot I think it does an interesting job showing what I'm doing with myself these days.

*Did you see what I did there? James Bond reference. Clever, precious, yesss.

Solid Food!

I ate some buffalo chicken and a side salad just now!


That's about all I got, but I'm pretty psyched about it so there.

Ohhhhhhh We're Halfway There!

Whooooahhhh! Livin' on a prayer!
Take my hand, and we'll make it I swear.
Whooooahhhh! Livin' on a prayer!

I had it in my head I would post this once I got to 84/168 hours of my first round of chemo, but the time to do that had come and gone in one of my worst days since all of this began, so I'll just update you all now on where I'm at.

As of the posting of this... post... I will be 114/168 hours through my first major round of chemo. It's been a rough couple of days. I don't feel nauseous, but I also havent really felt all that hungry either, which is a little annoying. I've not eaten too much for days, and my diet has consisted of liquid supplements (if I do think of food, then I begin to feel nauseous). My temperature has shifted from 99.2 up to 103.7, with very little indication of infection. My LDH (lactate dehydrogenase, not to be confused with "good cholesterol") has been rising over the last few days. My blood spigot (those of you in medicine will know this as a hickman line) has not been properly healing as the chemicals in charge of coagulation have been thrown into near gimbal lock and my platelets and hematocrit have been dropping pretty steadily requiring blood and plasma transfusions.

Add on top of that my allergic reaction to the plasma and a very odd sunburn looking (but not feeling) puffy-lip, vienna sausage-finger, dry-skin reaction to.... something.. possible one of the anti-biotics, which led to an IV push of benadryl nearly knocking me on my rear-end, and I'd say this weekend could have gone better than it did.

But it could also have gone worse. Much, much worse. And all's well that ends well, so they say.

This morning I got my labs back to find that my LDH is beginning to fall, meaning that the first wave of cell death is nearing completion and my body is finally starting to filter out the LDH faster than those few remaining ass-hole rebels are exploding in an unceremonious way, without even a nod of contempt from their healthy brethren. They're ready for this to be over too (I've decided). It's down from 12600 yesterday morning to 10860 this morning. Normal is something around 100-250 I think.

My hematocrit is at 23.1 after a few blood transfusions, but we're hoping one more should put me over the 24.0 marker.

My platelets are at 18, which is below the 50 marker but above the 10 marker. Certainly below the 150 normal minimum, so I may be getting a round of platelets today if the doctors feel it's necessary. If so, I say, "Bring it on."

And the best news is this: My white count has fallen rapidly to 0.39 (down from 40.00), meaning my body is responding very well to the chemo. Onk came in to have a look this morning and was very happy to see the color in my face and a general level of energy that I haven't had for a few days.

So good news all around.

54 more hours of chemotherapy to go. Then I have a month of recovery, another bone marrow biopsy, and a long couple months of chemo and recovery, chemo and recovery, until every last one of these fuckers is gone.

Sunday, October 16, 2011

Turn Your Key, Sir!

Most people seem to be rather familiar with the hit 1986 Matthew Broderick flick, "Ferris Bueller's Day Off." This is ok, but rather unfortunate as it completely overshadows the far superior Matthew Broderick film from three years earlier, "Wargames."

The premis of the film is that the American Government was losing faith in the ability of their soldiers to launch nuclear missiles upon command due to ethical uncertainties and their own personal fears. This uncertainty is displayed during the first scene of the film, where two soldiers are working in a bunker when they get a command on one of their main screens. They open up their books and decipher the command, and to their astonishment it's to launch their missiles immediately. Now to do this, they have to stand on opposite ends of the room, and each insert a key and simultaneously turn them, preventing any one man from launching the missiles. To build the premise of the film, one of the officers is ready to go, but the other one is hesitant, so the first officer pulls out his side arm and yells, "Turn your key, Sir!"

Man. It's such a good movie.

But there is a point to all of this, and it has to do with the chemotherapy. Chemo is really bad stuff. When the nurses are working with it, they wear special gloves and protective clothing. It was created for one purpose, and that purpose is to wipe out every last fast growning cell on a biblical scale. They don't want to give this to anyone lightly, or by mistake, so they have a system set up to prevent this.

Two nurses walk in. One holds the chemo and stands next to the computer. The other one walks over to me and reads my armband.

"Please state your full name."

"Bulwyf Amadeus Sarcophagus Broclergaard"

The nurse at the computer gives a nod of the head.

"Please state your date of birth"

"Born under the second moon, after the storms of spring."

The nurse next to me then reads my ID number:

"X23 F5 493 01"

The other nurse repeats.

"X23 F5 493 01"

It looks like I'm the one that's supposed to get this chemo!

It's a pretty sweet system and makes me feel like I'm living in the cold war, so I'm for it.

CT Scan

I got a CT scan of my pelvis just now. I asked them if I would be getting any protection, for as Sean Connery famously almost said, "Be careful what you scan. Most things down there don't react well to radiation."

Alas, no protection.

Update D+10

Well today was pretty terrible  on the scale of the past 2 days, but there is some light at the end of the tunnel it seems. The doctors are happy with how I am handling the chemo, and though I have zero appetite, I've been drinking supplement juice boxes and gatorade. I also walked 5 laps around the floor today. I'm not allowed to leave the floor, and if I leave my room I need to wear gloves and a mask, but it's good to get any type of exercise I can.

On the downside, they're worried about a possible infection in my heart. Fortunately, they aren't worried enough to do anything about it right now, so that's good news.

I'm about to get a CT scan of my biopsy site. None of my blood cultures have blossomed yet which points away from infection, but these fevers are out of control, so they just want to get to the bottom of this.

More to come later.

Saturday, October 15, 2011

Football Saturday

"Thanks for the updates. today is not a good day."

That pretty much sums up the last two days. I sent that text message to a friend of mine, Billiards, because today my alma mater played a football game, but it was not covered in the Boston TV networks (or at least the one the hospital has). Billiards was kind enough to send me updates throughout the game even though I slept through about half of it.

My fever has been all over the place, between 99.5 and 103.2 in the last two days. I need blood, and I need plasma, but I can't get blood products with a fever. On top of that, we tried the plasma but I had an allergic reaction to it and had to get 50cc's of IV delivered benadryl.

Holy shit.

That stuff will knock you on your ass, let me tell you. I was all loopy and couldn't really understand what was going on, but the good news it that the allergic reaction stopped.

Unfortunately, I'm about to get some more benadryl now, so this is me signing off for the day. I should get some plasma and some blood and hopefully tomorrow I will feel better.

I'm 73 hours into my 168 hour drip of chemo, so only a few days left.

My other chemo, which I got as an "IV Push" once per day on the first three days is now over, so here's to me hoping my awful feeling is from the push, and not from the regular chemo.

Haha. I can keep wishing!

I also have a large stuffed leukocyte as a gift from a very good and mildly twisted friend. And I'm loving it like McDonalds!

Benadryl is kicking in. Man this is weird, I'm going to go laydown for a bit now goodnight!

Friday, October 14, 2011

Cause ya had a bad day

Kym and Bill say hello to all of you! They're here with me now. They spend a lot of time here and it is pretty fantastic.

Today is not a great day. Last night my fever was all over the place so I was taking tylonol. I was so tired I slept though my morning labs, barely remember waking up for vitals, and didn't actually wake up until after receiving a pint of blood (they come in pints?!) I don't feel nauseous but I'm not hungry and haven't ben eating as much as I should. I get chills, I get hot flashes, and keeping my eyes open is increasingly difficult.

The labs are all coming back how we want them to look, but this chemo is taking its toll on me for sure.

Thursday, October 13, 2011

I/O Setup

For all of you post production sound folk out there, you can probably skip to the bottom if you don't want to read a very bastardized I/O setup orientation. Everyone else, please keep reading momentarily. When I'm not conquering mutinous microscopic monocytes, my day job is spent working in post-production sound for film and TV, mostly with cartoons. Sometimes I do sound design/editing, which entails watching a silent piece of cartoonage and adding in sound effects like footsteps or funny bells or birds flying by. Other times, I do mixing, which usually means the music, effects, and dialogue are already finished and placed where they need to be, but are completely out of whack with each other. The dialogue needs some echo on it if they're in a cave, or the music is too low, or maybe their footsteps are louder than their conversation. The largest show I work on usually takes me 1-2 days to mix, and those are about 22 minutes long. The program I use to do this is called Protools. It was originally manufactured by a company called Digidesign, but has since been bought out by Avid. That last sentence is not important, I just thought it was a fun little fact.

But the reason I say all of this is because there is a very important tab in the pulldown setup menu for Protools. It's called the I/O setup. For the larger systems, there are tons of different places that you can send your sound. These can be broken down into  Input, Output, and Busses.

The input settings are there so that you know if you plug a mic into whatever hardware you are using, you know how to set up Protools so that you can listen to that. If you plug a mic into input 1, but are monitoring or recording input 2, that doesn't very much help you record that sound. Knowing your input window is good for that.

Next is your outputs, which can get a bit more confusing than inputs, at least where I work. Most of the time, we're only using one input if we're recording something (Extra line of ADR, Cartoon dialogue, foley) so it's easy to keep track of. We'll mix in stereo (2 channel output) or surround (5.1 channel output [5 speakers, Left, Center Right, Left rear, Right rear... Sub woofer is the .1]) so we need to be a lot more vigilant with the output usually than the input. We don't want to be sending the center channel out of the wrong speaker, that'd just be crazy!!!! Seriously, imagine going into a movie theatre and hearing every line of dialogue coming from behind you.

The last thing, and arguably the most important, is the bussing structure. The bussing structure deals with inputs and outputs within your mixing session. This is important if you want to affect different sounds or send the sound around the room. Generally, you'll have a master track for each of the dialogue, music and effects. As you send sounds through those tracks, you'll want to pan the left or right on in the case of surround, front and rear and sub as well. From the original track where the sound exists, you send it through this auxiliary master track, and then from there it goes to a master record track. It could also go to another record track if you want a version of the film without dialogue or without music.

But if you want to affect that sound you need to bus the sound to the master track, and then fade a send to a special effects track, where you will add things like reverb or anything else. From there, it goes back to the master track and joins the unaffected sound before being thrown to the correct output master. It can get complicated.

The reason I bring all of this up is so you understand when they told me here I needed to watch my ins and outs, I was a bit confused. Turns out they mean liquids, and they are very strict. Every milliliter that I drink and every milliliter that I excrete goes down on to a little chart. If those numbers start to drift, that's bad news bears for my kidneys. Fortunately I've been going more often than they seem to be able to wake me up for vitals and antibiotics changes and blood drawings. It's pretty intense, but a bit more intuitive I think than the I/O setup I'm used to.

I kinda trailed off about halfway down because I got caught off guard by a pretty wicked fever. I think I'm done writing for the day, but I have some good ideas for posts in the future. Thanks to everyone who has written to me, it's really nice to hear from all of you but I don't see myself responding in the foreseeable future. The chemo is on hour 27/168, and I'm already feeling less than the average Bulwyf.

Good Morning!

It's a beautiful day outside! I can see the reflections of passersby on the roads and the grey clouds are blocking out any idea that a sun once existed. I was hoping to wake up with the sun this morning, but it seems now like that may have been a foolhardy proposition. The good news is that a nice lady from the kitchen called asking for my breakfast order and that prompted me to get up a little bit. Following that conversation, the physical therapist came in and set me up with some workout stuff on a bicycle. The thing about working out during all of this is not to beef up for a race or an Iron Man™ competition, but rather to just keep a shadow of my conditioning alive so that when I get out of here, returning to my daily routine will be as easy as pie.

Mmm. I love me some pie. Especially pumpkin pie. I think pumpkin pie has always been my favorite type of pie. Pumpkin ale is a great beverage, and salted/baked pumpkin seeds are a delectable dish. Pumpkins rule.

How am I feeling today?

Well it's been a little over twelve hours since the chemo began, and last night when I woke up I felt a little nauseous. Other than that, I feel pretty okay. Nothing major going on right now. I had a good laugh when the nurse came in to draw my daily labs and it didn't involve a needle in my arm. I'm hoping to get a good picture of my right arm so you can all understand why I am psyched about my blood spigot.

That's all for now. I'll update ya'll as relavant updates become available/I feel like writing!

Wednesday, October 12, 2011


I now have tasty and sweet and juicy chemicals flowing through my body. 

More tonight on the Great Monocytic Purge that I and others smarter than me have authorized, on this Wednesday, October Twelfth, Two Thousand and Eleven, Common Era.

We are delayed

Please stay on the line.....

Bring on the Chemo!

My gimbals are good. My pitch is good.

T minus 15 minutes to my first 168 hours of chemotherapy.

Today was the first day since checking in that I have not needed oxycodone in order to walk around without wincing. I can finally use both arms freely now that my fluids and antibiotics are going into my blood spigot...

Let me just say, I've had blood drawn twice today since surgery, and guess how many times I had a needle go into my arm in a painful and poking motion. Well I'll give you a hint: If I had no hands, I could count the number of times on my fingers. Get it? Zero. Zero times.

It makes me feel like a pirate who just boarded a powerless ship and took all of the booty, screaming, "Argh! 'tis my gold, to be sure!"

Where was I? Ahh yes. I washed out my mouth with anti-fungal goo (being neutropenic means the mouth is now extra vulnerable to invasion). I got to eat a hot dog and mac&cheese. Now I'm watching Law and Order. There is a character named Mr. Jenkins. His first name may or may not be Leroy, but as it stands I can't take this episode seriously.

Chemo in T minus 5 minutes.



He's More Machine, Now, Than Man

Someone once said:

You can't always get what you want...
You can't always get what you want...
You can't always get what you want...
But if you try sometimes,
You might find,
You get a blood spigot.

Man. This is gonna be mad sweet.

They're about to build a spigot right into my chest. There will be two openings (both of them two-way) so that I can still be getting things like saline, antibiotics, chemotherapy, blood, platelets... but they can also draw my daily morning blood samples from there without interrupting the flow of juicy and sweet chemicals. Basically, the only time I will need to get a needle in my arms now is if they need to draw blood cultures (no blossoming, blood!).

I'm also a little fired up to be part android. Hopefully I won't turn out to be twisted and evil.

Chemo Starts Today


Today is the day. I get a blood spigot in just a few minutes, and then this afternoon, the chemo begins. I can't say I've ever thought in my life before a week ago that I'd be getting chemo, but you know what they say, "pumpkins don't smile until they've been cut open, gutted, and carved."

I'm not so sure I understand it either, but Kym and Bill got me a nice stuffed jack-o-lantern for my room and it's smiling at me right now, so the day is looking up!

I like pumpkins.

Tuesday, October 11, 2011

My First Breakdown

Well, it happened today. Until today I'd been handling all of this particularly well. People will often ask "How are you?" Many of them mean it, many don't really care, and honestly many don't know what else there is to say. I'm not sure I would know what else to say. But honestly, very honestly, I've been doing quite well. I totally understand what's going on. I get that I need to start chemo soon, and I get that it won't be swell. I get that after the chemo, I'm at a major risk for infection and need to live in a box. I get that the major suckiness will probably come after chemo, when my blood is all sorts of messed up.

I get that I have acute myeloid/myelomonocytic leukemia. I have cancer, and that's what I can deal with.

It's everything else that builds and builds. And because I am putting so much energy and effort into dealing with the cancer, I tend to have a much shorter fuse with everything else.

It's like taking the SATs. You study and study, you build up your knowledge and your confidence. You aren't scared, you aren't angry, you aren't stressed. You're ready. But every day, your friends ask you to go out each night. At first the extra noise is fine, but slowly it builds and builds and builds until you snap. On the outside it looks like you're stressing about the test, but in reality the test is the only thing you're sure about.

A lot happened today.

0200 Wake up for vitals and antibiotics.
0530 Wake up for blood cultures, vitals, and a change of sheets due to night sweats.
0800 No breakfast, because I might get surgery today.
0900 Downstairs for an echocardiogram of my heart. It's basically an ultrasound.
1000 Bone marrow biopsy
Many things with no sense of time: More vital checks. More antibiotics.

It looks like my surgery is tomorrow. Ok, I can eat now. 45 Minute wait. Usually not a problem, but I haven't eaten. It comes in and I eat.

My HCT is 23. Anything under 24 and I need someone else's blood. Never realized how emotional it is to recieve blood. Somewhere, someone who doesn't know me donated a pint of their blood. Donated. Getting nothing in return. If I don't get it, I could die. If millions of people didn't get it, they could die. Someone prevented me from dying today, and I don't even know them. I get a little choked up. If I hadn't known I had leukemia, I would be somewhere else right now, and I should be getting blood. I wish I could thank whoever's blood is now helping me live.

The blood was in the fridge. It's ice cold in my arm. It almost burns. No, it's so cold it does indeed burn. My arm really hurts, so I loop the hose in such a fasion under my blankets to warm it up before it gets to me. I now have one arm.

I need to use the bathroom. This is already a process when hooked up to a rack giving me saline and antibiotics. Now it's giving me blood, but if I dont keep the hose warm, it really hurts. I try to use the bathroom but, alas, I cant do it correctly. Grr.

My mom passes me a pair of boxers and I put on my sweatpants. I finish up, limp back to my bed (two biopsies in the right leg, remember), and crawl back in. A bit out of breath. I'm anemic.

Nurse walks in and my family gives me some space. "You need to call the sperm bank today." The chemo could make me infertile. Though I have no interest in having children right now, that could very well change in the future. I call the bank. They charge $1000 per specimen. "Does insurance cover this?" They tell me to call my insurance company. All one-armed. Trying to keep the hose warm. I call the broker, I need to have a doctor call. I get my doctor to call. I call work to see how things might go at the end of all of this. Things are looking up. I'm talking to my boss, but the doctor walks in and needs to call the insurance company directly. Time is running out as the sun is falling fast. The number is on the back of my card. The card is in my wallet. The wallet is in my black fleece. My fleece is... wait.. where is my fleece? It should be in that drawer, the doctor can't find it. I can get it later. She needs it now. I hang up on my boss, he understands. I call my sister. "Where is my fleece?" It's in the drawer, tucked away. I get up, the hose gets loose. Dammit that hurts, my arm is engulfed in an icy flame. Kym wants to know if she can come back in. Not yet. Then why'd I call? "I gotta go it's fine!" I get the wallet. I get the card. The doctor leaves. I limp back to bed, I cover the hose, my arm starts to feel ok... slowly.


Okay, I think it's okay for the family to come back in. They come back in. They're talking. I just want some me time. They've offered to leave at the drop of a hat, I just need to say the word. I'm about to when....

Vitals! Thermometer in my mouth... I'll ask them afterwards. What are they talking about? I don't care. There's the doctor. Okay, I'd like them to leave. There's a thermometer in my mouth. I wave my arm. I can't wave both or my arm will hurt. Kym doesn't notice. Man I really wish they'd leave.

"The insurance won't cover it"

"Cover what?"

Thermometer out. Hands out. Hose loose.

Fuck, my arm!


"What? Oh, okay! Sorry!"

They're gone... it's too much today. I just need some time to myself.

The tears come shortly thereafter. I didn't want to yell at my sister. The tears last a good while, but the doctor is very comforting. I don't mind the cost, I just wish I knew I had to cover it before all of that.

I start chemo soon. Probably tomorrow. I can deal with that. The cancer is fast growing, I'm not scared. I'll be in the hospital for months. I'm not worried. I can't work for months, I'm not stressed.

But shit. There is so much more to cancer than that.

It's weird. I have a very positive outlook on the cancer. I'll deal with the pain and I'll deal with the vomit and I'll deal with the hairloss and I'll deal with the nightsweats and I'll deal with the blood drawings and I'll deal with the bone marrow extractions and I'll deal with a thousand other complications because I have no other choice. I have to deal with them, and I'm confident I will.

It's the choices that make it difficult. Trial or no trial? Bank or no bank? Do I want people here or do I want my own time? Do I want to walk around or do I want to write? Do I want chicken or tofu? Soup or salad? Both? Milkshake? Do I want them to pick me up something from outside?

I don't know! I really don't. I need orders. I need to be told I have no options. I need to have a plan, and I need to know what that is. I can fight this, but I need to know how I'm going to do it.

I met Onk tonight, and she explained the plan. It was the first sense of calm I felt all day. I just want to fight the cancer.

Chemo starts tomorrow afternoon.

Let's do this.

Bone Marrow Biopsy


That felt very, very weird. There are weird things in life. Then there are hipsters. Then there are snakes who move on land without feet. And then there is the feeling of a bone marrow biopsy.

So where are we? D+5 I think it is. Went down stairs for an echocardiogram of my heart which apparently turned out splendidly. Then I came back upstairs to wait for my biopsy. Unlike the lymph node biopsy from last Monday, they can get the bone marrow sample right in the office... or in my case, my dorm room.

The procedure was much different than the thing I saw on House once. I rolled onto my tummy, and the pricked me in the lower bakc with something that felt like a honeybee sting. After a couple minutes they asked me "Did you feel that?"

"Feel what?"


The next sensation is very odd. They stick a big needle into my hip bone and swish it around. I don't know how to describe this. The best thing I can come up with is this: You know when the punk kids next door decide to have a party and blast the music, but only the bass gets through so you only feel lots of vibration? Well, it's kinda like that but instead of being next door, they're dancing in your hip bone.

Or maybe a bag of marbles under your skin being moved hither and thither.

Either way, it's odd. I was laughing the whole time and the reactions from those performing the operation seemed to be confused by my reaction. Maybe they didn't realize I had oxycodone and ativan in my system.


"Oh did that hurt?"

"Yeah a little, it felt weird."

"Like a sharp pain?"

"Well no, just regular pain."

"Okay well, you're about to feel some pressure."


The pain came later. Now I have a hole in my right leg on the front where a lymph node used to be. And I have a hole in my right leg on my backside where some bone marrow used to be. Let's hope I don't have to do that again.

Funny story, I signed up for a trial drug and am getting another biopsy in a couple days.

Mike: 0       Bad Decisions: 1

Monday, October 10, 2011

Game Night!

Well the rest of today was fun. I found out at lunch the hot dogs here are bangin'. I'll be getting another one tomorrow. Also got some lab reports today... those are not so bangin'.

Normal Total White Count (WBC): 4-10
My WBC: 40

Normal Hematocrit (HCT): 40-54
My HCT: 25.2
HCT level where blood transfusion becomes necessary: 25

Normal Platelet Level (PLT): 150-450
My Platelet Level: 96

Here's the kicker...

Normal Neutrophil Count (POLY): 48-76
My POLY: One

One Neutrophil.

Glad I'm on antibiotics!

The pathologist also wrote a personal message on the bottom of the report:

"Medium to large deeply basophilic cytoplasm with prominent nucleoli to be reviewed"

That's probably all those naive monocytes that have no idea they're supposed to find some tissue and blossom into macrophages, resident cells tasked with general maintenance and first responder defense. Ack! It's really sad that they are cancerous and will never get the chance to mature. They don't even know it. It's just some bastard ancestor who decided to mutate into a goddamn cancer cell. What a dick.

But the bright side about my labs is that my liver and kidneys are doing a bang up job out there in the trenches.

Uric acid is right where it needs to be, as is sodium, potassium, and chlorine. The only oddity is Lactate Dehydrogenase.

Normal LDH: 135-225.
My LDH: 923.

Not exactly sure what it does, but I can give you a brief idea of what this means.

Apoptosis is a wonderful thing. Normally, when a cell dies, it commits suicide using a method called apoptosis. It does this in such a way that it appears to implode, successfully removing itself from the body without spilling its innards everywhere. This is especially observable during a viral infection. T-cells (lymphocytes... not the ones affected in me) that have a specific protein on them called CD8 are coined as "killer t cells." During a viral infection, they waltz around gracefully and methodically, going from cell to cell in the infected tissue. If the cells have a virus inside of them, the killer t cell latches on to the infected friend and calls out into the wind, "Today is not your day, my friend. You have a very small fellow living inside of you. I have always been fair, but I have always been tough and now is the time you must accept your peril, and for the good of the collective fall on your sword!" And the sun shines brightly and the trees rock gently and all you hear is the sound of the grass swaying softly in the cool breeze. At this point the cell accepts the CD8+ T-Lymphocyte's decision and undergoes apoptosis. This makes sure the cell dies without bestowing the same virus on its comrades.

It's a pretty wonderful thing eh?

Yeah mine aren't doing that right now. The population explosion of monocytes is choking out the bone marrow and the other blood cells. Cells are dying by the boatloads and are not receiving the correct signals to do it in a proper manner. They're just dying, and as they die they release oodles of LDH into my blood.

Alas, there is only so much the liver and kidneys can be expected to do. When is it too much, I ask?! When?!! Oh how I adore the liver, with its spacial consumption and metabolic perfection. And the kidneys, regulating electrolytes like a wizard regulates mana. Or sorceress/witch/female wizard, I don't discriminate here.

My point is, we played monopoly tonight. Kym and my mom were around, so we started a game sometime this afternoon. We took breaks, as you might expect. I donned a mask and gloves and left my room, going for a few walks around my floor. I also took a killer nap around 4, waking up an hour later and feeling like a new man. But the kind of new man who still can't go outside. The oxycodone helped that too, I'm sure. The pain of my wound is still pretty disabling, so Onk and the nurses are helping me out there.

Between 1100 and 1750 I was untethered as my vitals were good, my liquids were good, and I was between some meds.

I have a new oral care routine. One anti-bacterial mouthwash 2 times a day. One anti-fungal 3 times a day (I swallow that one!), and no more toothbrush. I now use tiny green sponges on sticks to gently remove plaque and food. They gave me a directly applied goo to help the pain of the sore on my tongue, so eating is easier now. I really wish it would just go away though. (Spoiler alert, my mouth will be a train wreck by the end of treatment).

For dinner I ordered a Mighty Shake™ which is amazing. Nice and cold, tasty and good, and no one can yell at me for eating junk food because it's made from corn and corn is a vegetable.

Ahh yes, the game.

Later in the night we began playing again. I got lucky with a few rolls and made some trades at the right times and I am happy to say I am the 1% today. Suck that, people who want jobs.

Plans for tomorrow include a bone marrow biopsy, echocardiogram, and blood spigot installation. Here's me rooting especially for the blood spigot!

Night Sweats

Last night was fun. My fever spiked to 100.6, so right before I went to bed the medical folk decided they needed some blood cultures. These are really neat but a bit annoying on my end. Basically, the vial is filled with some crazy liquid, and my blood is added to it... but my blood already has a brilliant concoction of IV antibiotics. If the antibiotics aren't working, then my blood should blossom like a spring garden on a warm day, with the sun's golden face shining lovingly on her children.

I'm not really hoping that's the case.

What we need is a sad grey lifeless nothing to show up inside that vial. The annoying thing is that if I get a fever, it points to infection. And if I could have an infection, they want cultures. And if they want cultures they want two samples, one from each arm. *sigh* That on top of normal daily labs and I'm starting to look like a heroin addict.

But back to my title. Night Sweats.

Fell asleep shortly after 10pm. Woke up at 2am so they could check my vitals (Blood pressure, pulse, temperature). My bed was pretty soaked. They changed my sheets and I changed my shirt, and everything was just peachy. Until I woke up at 0530 so they could draw my daily labs. Soaked again! New sheets, new shirt, good to go!

Finally woke up again to one of the resident MDs saying hello and doing her rounds. Here's the fun part of the morning. I stood up so she could check my wound from the lymph node biopsy, and a few seconds later the room was spinning and I was ready to puke. Fortunately I hadn't eaten for a while, so after a few dry heaves I was back on my bed a bit shaken up but otherwise ok. My nurse came in to check vitals and it seemed ok, but she wanted to check them again after I stood up.

Blood pressure dropped from a solid 120/60ish while sitting to 87/45ish while standing.

Welp. That'll do it.

Now I've got some antibiotics and some extra fluids pumping into me and all is well in the world again.

I also got an ultrasound of the area around the wound earlier to check for fluid pockets but it just looks like regular inflammation.

Oh! One more thing.

I had a kick ass-dream last night. I was trying to catch a special kind of mouse. You had to turn off the lights and it would  venture out, but it wouldn't see you because the lights are off. You have to slowly pour dirt on top of it to sedate it momentarily, and then grab it and throw it into a bucket. After taking a blood sample, we give them vicodin and release them back into the wild. This was supposed to help diabetes research.

Weird, huh?

That's all for now.

Sunday, October 9, 2011

I Have Cancer

Hello World!

Well it's been a few days now since everything hit the fan in a spectacular fashion. I'll write a quick update here to explain how I got to where I am, and hopefully I can supply updates throughout the next few months as a form of public journal. Obviously there will be times when I am unable to write. And it also might turn out that after a few days, I just have no interest in writing, but we'll take it one day at a time.

My name is not actually Bulwyf Broclergaard. Bulwyf is the name I'd like to give my first dog, and Broclergaard sounds kickass.

So a few weeks ago, I woke up with large lymph nodes. Not a big deal but the strange thing was that I had zero other symptoms except for some weak gums. I thought they might be unrelated, but I was also a bit worried about a possible tooth abscess. I had no fever, coughing, sore throat, sinus issues, ear issues... nothing that would justify having large lymph nodes. The two largest were under my ears, and it felt like they were pushing up against my ear canal. As my job was post-production sound mixing, that was an issue I wanted to get resolved sooner rather than later. My first doctors visit was the fifth day after my first symptoms arose (Sy+5).

The doctor checked out my neck and I mentioned my bleeding gums, but due to my lack of symptoms, he felt they were probably unrelated and I might just have a mild case of gingivitis or something. I was still worried about a tooth abscess, but he was thinking more along the lines of a blocked lymphatic duct. I should mention that besides my redder than normal gums, there was no pain or any specific tooth that looked especially bad. He sent me to get an MRI and referred me to an ENT. The folks at the office took care of authorization from my insurance, so that was nice. One less thing.

Later that day I got my MRI and chest x-ray and headed on home. The following day (Sy+6) I traveled to my alma mater to tailgate with some great friends for a football game. It was a grand old time with lots of heckling the other team and beers and overall a good time. After the game, we headed back home.

This is where things begin to get interesting. My sister, Kym, works in medicine and was home for the weekend. I'd been in contact with her about everything from Sy+1 so she was aware. She gave me a quick rundown and noticed that I had enlarged lymph nodes in my armpits. That pretty much ruled out the clogged duct and tooth abscess ideas. I'd been living in NYC for two years without a primary care physician (PCP), so I figured now was a good time to get one. That night I was online, and a good friend in NYC worked at a PCP office in Manhattan. She offered to set me up with an appointment the following Monday.

So on Monday (Sy+8) I went to see my brand new doctor. She was very nice and received her undergraduate degree from my alma mater, so I was a fan. She ordered blood work and we waited.

On Wednesday (Sy+10) we got the results, which showed an abnormally low number of neutrophils and an extremely high number of Lymphocytes. I'm a young male in my 20's which makes me a prime candidate for Lymphoma. That was my PCP's main worry, so after talking to some other doctors, we were able to schedule a biopsy for the following Monday. The weekend before my biopsy, I went home again to hang out with my best friend, Julian, and watch the game (I don't have cable in my NYC apt). At this point, fearing lymphoma, I thought it was unwise to drink, so I had a beer on Saturday and left it at that.

Sy+15. Monday I had my biopsy. The surgeon took a lymph node out of my groin and put it into a jar, probably. I dont actually know where they put that type of thing, but deep down I hope it's a jar because that'd look cool. "One of my lymph nodes is in a jar." Who talks like that? Well, I do now. I figured the few days after I lost the node, I could just hear a dendritic cell rounding a corner in a nearby lymphatic duct yelling, "What the crap?! I spend all this time bringing an antigen from afar to present to some CD4+ t-cells, and what happens when I get there? Nothing! Nothing happens at all because, 'New rule. Apparently lymph nodes can just disappear now.' Oh I'm sorry I didn't realize that."

Sy+18. It's now Thursday. I feel feverish and head to a pharmacy to grab a thermometer. $12.50 later, I find out I have a fever of 100.6 f. "Well, that'd probably not too good," I think. I just had surgery, so I fear infection. I call my surgeon and leave a message. After being underground for 40 minutes riding a couple trains, I emerge from some concrete steps to find a few messages on my phone.

The important one was from my surgeon. I'm glad he returned my call and proceed to return his. He picks up immediately and tells me he isn't too worried about a fever under 101.0, so my worries subside. What he is worried about is my biopsy. It doesn't look like lymphoma, but  the findings are consistent with Leukemia. That doesn't sound very pleasant. I ask him what the next step is. He's already set me up with an oncologist friend of his, but he'd like me to see someone earlier if I can.

Meanwhile, back at the batcave....

Kym's been on me through all of this. Her fiance', Bill, started chemotherapy for Lymphoma nearly two years ago to the day. With the recent findings, she was not what I would call "excited." Up until now she'd been very supportive saying things like "there is no need to worry until we have a reason to worry." I agreed. I worried myself over lymphoma and that turned out to be nothing. As far as I was concerned at this point, I refused to work myself up. We had a few phone calls back and forth Thursday night and Friday morning while she consulted people she worked with about my case. I had forwarded my blood lab report and biopsy report when I got them, so she was able to review those herself.

"I really think you should get another blood test, Bulwyf." But of course, my real name is not Bulwyf. How clever I am.

"Okay," I said half listening. I was at work and trying to finish up some important things that day. "Well, the surgeon talked to the oncologist and they don't seem too worried. I should be able to wait until my appointment on Monday."

"Well, the problem is that that could be true. That doesn't mean it definitely is true. I really want you to get a CBC (complete blood count) test today... you know.. just so we know it's okay. If your count is fine then we can wait until Monday, but your neutrophil count was low last time and you have a fever now."

I'm paying a bit more attention now. She is very much advocating for this, and she has rarely steered me wrong in the past (well beyond medical issues. I've learned to listen to her).

"Okay," I say, "Well I'll call the oncologist and see if I can get in today for a CBC.

I text her some things. I try to get ahold of people. My phone dies.



Well okay. I have my work phone. But I gave all the doctors my cell phone number.

Blast. Well, you can't win 'em all right?

My phone rings. It's Kym.

"Can you just come up here?"

Now I start to worry. She wouldn't ask me that if she weren't worried, and her being worried is enough to worry me. Things are moving very quickly now.

Doctor calls back. I can get a CBC if I leave work right now. My boss gives me the green light (employer's been great through all of this) and I head downtown. They draw my blood. The doctor meets me, he's stayed late for this. My report comes.

Lymphocytes are down even more. My platelets are below 96,000 (minimum normal is 150,000). Total white count? 24,000. Maximum normal white count is 10,000. Platelets are not white blood cells. Colloquially called Thrombocytes, they are very tiny non-nucleated cells born en masse out of the ashes of the Great Megakaryocytes in the bone marrow.

This is enough for the oncologist to request I check myself into a hospital no later than tomorrow morning. Kym and Bill are already on their way from Boston, and so I decided to check myself in up there. It will be nice to be near family, and my other choice of Philly is too far from my parents' house to make it a good decision. In Boston, I'll be 10 minutes from Kym's, so if my family or friends want to make the journey up here, they'll at least have a place to stay. My parents are already on their way up.

I call that day (Sy+19) diagnosis day 1 (D+1). The doc has told me I have AML. Acute Myeloid Leukemia.


The next day is Saturday, D+2. I wake up at Kym's place and my parents are already there.

Check in. Move in. Talk to my new oncologist, Onk. It looks like I have a subset of AML called Acute Myeloid/myelomonocytic Leukemia. My teeth are shown to the intern and resident as a textbook example of this subtype of AML.

Onk looks at my wound from surgery. It's swollen and tender. She goes through the basics of this cancer and it looks like I'll be here for a few months.

Now it's Sunday. Kym stayed in my room with me last night to help me with things. It hurts to walk and I'm tethered to an IV a good portion of the day and night so it's nice to have someone around. I got one IV jack in my wrist and pricked for blood in my arms twice yesterday. Woken up at 0200 for a change in anti-biotics and a read of my vitals. Woken up again at 0530 for some more blood work. Woken up later for a re-check of vitals. Woken up around 0730 when the kitchen called to get my breakfast order. Woke up for real sometime later and ate some tasty breakfast. It's tasty and good.

Some oxycodone, anti-biotics, another blood prick, and a few hours later and here I sit in my chair.

Taken a bit by surprise by all of this, but ready to take it on. They want an ultrasound of my heart soon and I'm hoping to get a blood spigot in my chest soon so I don't have to worry about so many needles all the time. They want to draw blood every day, but with a blood spigot, they can just draw it from the tap!

Blood on tap is always better than in a bottle anyway, unless it's from a field mouse.