Conversations with Organs: The Liver

I often wonder, and by often I mean once last night, what my liver must be thinking about this whole thing. I envision an angry neighbor trying to watch the evening news, brooding to himself about those damned kids next door and their music. I imagine this until it all come to a head, and one day I half expect to wake up to see my liver ripping itself out of my body like the alien from Alien, except that my liver is more intimidating because he's holding a board with a nail in it.

He stares at me, and I stare right back at him.

"What the FUCK are you trying to prove man? I'm sittin' down there, minding my own business, when suddenly I start getting flooded with shit! I put up with a week of this shit and then a few weeks later, you decide in your infinite wisdom to give me some more shit! Then, in the following weeks, I go through another round of toxins, get blasted by radiation, and find myself to be the target of T-cells on a search and destroy mission.

"What. The. Hell.

"Was I a bad liver? How many times did I pull your ass off the ground when you drank too much? How many?!"

"You.. you pulled my ass off the ground quite a few times..."

"I'm not finished. And the other thing is... we go along like this 'ain't no big thang' when BAM! Eleven months later, you start doing it all over again! Now, I don't want to get involved with your politics, I don't want money, and I could care less about your business affairs. But I feel I have a right to know why you do... whatever it is that you're doing out there. But most importantly, I was just getting frustrated and needed to let that out."

"Well," I say to my liver, still slightly perplexed that it's both talking to me and not inside of me," I understand your frustration and I hope your grievances will soon be put to rest. I apologize that I haven't kept you totally in the loop. I made the assumption that you were not sentient, and that's my fault. That blame lies with me. Unfortunately, this routine will continue in the foreseeable future, and there is nothing you nor I can do about that now. I'm sick, Liver. From my chair here, this is our best option."

There is a moment of silence. Liver no longer looks like he's brooding. His large board with a nail in it rests quietly at his side. We have a moment, but I know there is work to be done. He just ripped open my entire abdomen and I have a platelet count of 6 (150-450 is normal), so not bleeding out was objective number one.

"So, here's what you're gonna do. You're gonna get back into my abdomen, however you can. And we're gonna go over this thing step by step so there's no foul-ups. I don't have to tell you we're all a little tired out here. Transplant's getting awfully big in the window. And we're running out of options."

*credit due to my good friend, Crix Madine for helping me with this post.

That 70's Show

Well... we're back, in the hospital again...

Yeah, but at least we're out of the tree.


So I'm back at it. The biopsy results showed us that the leukemia was once again on the move, so I just finished another delicious cocktail of chemotherapy drugs. Hopefully by mid-March we'll know if it did the trick. The strange thing this time around is how well my body seems to be tolerating the toxicity of the chemo itself. The nurses and I got on a pretty good schedule with pre-medicating more nausea and appetite, and I also started something called Marinol.

For those not familiar, the active ingredient in marijuana is THC. It's fat soluble which is why it can show up on urine tests up to a month after use. Well, in our federal government's infinite wisdom, they decided that the plant itself should be illegal across the board, even medical reasons. BUT, a few folks figured out how to synthisize the THC in a lab and pass it off as a prescription drug. It helps with eating, drinking, and it decreases nausea. That seems to be a-ok with the feds and so here I sit.

Every other round of chemo had me losing weight at the get go, and losing about 15-25 lbs per treatment. This time, I'm not losing weight at all and might actually be gaining more weight back after the chemo I got in December. I'm also on prednisone which helps with appetite and energy.

I've been given permission to play the hospital's baby grand piano after 6pm, so that's on the menu for today if I'm feeling up to it by then. It's hard to say because things can change by the hour.

Well that's about all I have right now.

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.