Fortunately, Unfortunately

At one point in elementary school I recall doing a picture story with subtitles. We were supposed to tell the story of a person who was going through a series of fortunate and unfortunate events seemingly out of that person's control. The only part I remember is at one point my fellow landed on the Siris(sic) (what I called the Sears, at the time) Tower...  I don't remember why or how. My guess is it looked something like:

Unfortunately, he fell out of his airplane. Fortunately, he landed on the Siris Tower.

Well, I'm going to take you through a series of fortunate and unfortunate things I've learned this week.

Fortunately, Im out of the hospital for an extra week... unless I get a fever.

Unfortunately, the leukemia is still there.

Fortunately, it's not growing as quickly as expected.

Unfortunately, I could need more chemotherapy.

Neutrally? I definitely will get another bone marrow biopsy.

This isn't working out like I had planned. Well, fuck it.

Here's the thing. The leukemia is still there. It's still growing, because that's what cancer does. The question is whether or not my new cells are killing the leukemia faster than it can grow. I relapsed in November, so we know they weren't doing a very good job back then. We also know that I was on a lot of immunosuppressive drugs in November, while I'm on barely any now. We also know that my new cells have a history of attacking non-leukemia cells, which is what required so much immunosuppression last year. We also know that suppressing my immune system protects my liver, but also protects the leukemia. We also know that Saving Private Ryan should have won Best Picture, and the fact that it lost to... another movie... like, any other movie... in the entire world (in 1999)... is a travesty.

So until we have my blood work (which shows blood cell counts, liver enzymes, electrolytes [kidney function]), and another bone marrow biopsy (which, combined with last week's biopsy, can tell us if I'm winning or losing), there isn't much we can predict for the future.

So, this week I will write some music and watch some movies. On Friday I'll see my blood tests and get a needle jammed into my hip. Next week... well, next week I'll get some news.

But, the takeaway from all of this is that I have this whole week off from chemotherapy. And that's a Martha Stewart level Good Thing.

The Good, the Bad, and the Ugly

The good news is that MEC took a sizable chunk out of the returning leukemia. I started chemo when I had about 80% blasts (bad dudes) in my peripheral blood (veins and such). After the chemo, there are no blasts in my periphery and we're still waiting on how many are in my bone marrow.

The bad news is that there are still some blasts in my marrow. I got a stake driven into my hip last week and the prelim results show leukemia, so we have to delay transplant and do another round of chemo. Last year, it took 2 different rounds of chemo to get me into remission, so let us hope this time will be the same. We also have reason to hope my donor cells are still fighting the good fight and at least keeping the numbers in check while we decide what to do next.

The ugly part is that this is still a shit sandwich any way you spin it. I understand that beauty is in the eye of the beholder, but if you think a shit sandwich is beautiful, well, you know, that's... just like, your opinion, man.

"The Future is Unwritten"

-Doc Emmet Brown

6 weeks after entering the hospital for a nice round of MEC chemotherapy, my body chugged along to create enough white cells for me to go home. So for now I am back at the house. I have a bone marrow biopsy on Friday, and that will tell us quite a bit. I hope to have the results by Wednesday of next week, but regardless of which day I get the results, I'll be sure to update you here.

On a side note. I've been getting back into writing music, which is a great mental distraction, but can also be very mentally exhausting. Overall though, I am happy for it.

Best,

Bulwyf

No News is Good News

So, here's some news:

Cancer's back.

Went in last Monday (November 26) for routine blood work and there they be, those bastard monocytes from the Old Realm charging on horseback over the horizon. So, once again we did the obvious and killed off everyone in the hopes that the horseback riding folk got caught in the blast. About 20-25 days from now we'll find out if I'm in remission, and if I am, we try another transplant. If not, well I don't really know what the plan is. Any more chemo at the moment isn't helpful because my white count is already at zero, so right now the plan is to wait in a Viktor Navorski style limbo for the next few weeks. I can't go to transplant, I can't do more chemo, and I can't go home.

So I wait.

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."

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.

Perspective

You know, this week has not been swell. My alma mater has been slammed by the NCAA without the benefit of due process, my GvH is intermittently itchy and doesn't seem have any interest in leaving me alone, my best friend's grandfather has passed away, and I'm taking 13 pills this morning to help recover from cancer that I got before I was 25 years old.

But people in Haiti are suffering more than me.

So, what can I really complain about?

Sailboats are Weird.

I would love to go back in time to the conversation where someone invented a sailboat:


Bill looks out on the water. It sure is windy this day in the past. Kym walk up.

"What are you pondering, Bill?" she asks.

Bill takes a moment, staring out under his furrowed brow. "Do you see the water out there?"

"Well, sure I do!"

"Well.. okay... you see how... you see how the wind is going, that way?" He makes a gesture to the left.

"Why Bill, the wind always blows that way in the summertime!"

"Of course, of course. But.. well I have a neat idea."

"Oh?"

"I think what we should do is take a boat... put a big-ass sail on it, and make it go THAT way!" He gestures to the right.

Kym looks at him, and her brow is now furrowed.

"Alright Bill."


Seriously... sailboats are WEIRD.

Anyway, I went kayaking on Friday. Went a solid 13.5 miles all while listening to the first 8 Beethoven symphonies and the first movement of the 9th. It was a good time and I'm glad that my strength seems to be returning. This GvH seems to have leveled off, but I'm not yet convinced it is going down. I guess we'll see tomorrow.

GvH

Whatuuuuup?!?!

Listening to My Chemical Romance's album, The Black Parade. It's always enough to pump me up. Though, in all honesty, I doubt the pumped-uppedness will last very long. "Why" you ask? Because I'm on a kick-ass anti-itch medication. It's like super benedryl and it stops me from itching, as the name implies. But it also knocks me on my butt faster than a banana peel.

Which brings me to a thought; banana peels, like tyrannosaurusen, are not all bad. Though I complain about my itchy GvH, it's important to remember that my old cells were.. you know.. cancer. So if the new ones want to bitch out the old ones every once in a while, Dr. Grant tells me it's a Martha Stewart level good thing. So, werd.

I went to my appointment on Wednesday with Kym, and my increased liver function is a pretty good indication that my itchy rash is GvH and not something else. This means we don't need a biopsy! That's good news here. I'm going onto another stretch of steroids, which means that I am now at risk for thrush, a goo that grows in my throat. Before, the almond shaped pill protected me from thrush, but now that I am no longer taking that, I need to drink a bad tasting goo that protects me from the bad goo.

By the way, if any of this makes no sense, it's because I'm listening to this album at a rockin' level and not proofreading.

So, drinking goo, preventing goo.... where was I?

Right! They also increased my tacrolimus. But, now that I'm on steroids, the infectious disease folk might want me to go back on the almond shaped pill to protect me from the fungal nodules on my organs... so I wouldn't have to drink the bad tasting goo. But! If we do that, then they need to lower my tacrolimus pill intake, as the increase in almond-pill will naturally increase my tac-level. But we might not do that.

Lots going on with that.

Basically, here's the dill:

I'm still doing quite well, and GvH alone doesn't have much meaning in the infection-related side of the transplant, so even though I am getting GvH 6 months out (which is not uncommon), it's not really something that affects when I will be cleared to leave Boston and go back to work.

That's an entirely new conversation right there, so I'll leave you with this to chew on for a bit and write another post soon:

Gum.

Yeah. Go chew some gum. It'll be good for your jaw muscles.

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.