Up On The Roof Again

Sorry for the lapse in posts – I was discharged from the hospital early Wednesday afternoon with instructions to report back to be admitted at 8:30 am on Friday. I was overwhelmed with enjoying my time home (which I did) and never even thought to check my e-mail or write a new post. When I came in for my appointment Friday there were no beds available on the HEMONC ward (and I was a little pushy about spending the weekend at home) So they sent me home and instead I was admitted this morning to begin the next round of chemotherapy. Bonus Weekend!

Being home was unbelievably enjoyable even if it was a bit of a tease knowing I was going to be re-admitted so soon. Easily the best part about being home was sleeping in my own bed again. For those who don’t know I had pipes break in my previous apartment on several occasions during the two years I lived there (yeah, I don’t know why I stayed either) and these pipes were always in my bedroom. As a result my landlord’s insurance company was on the hook to buy me a new bed – I went all out: a Sealy, king plus, pillowtop, almost unreasonably decadent and after so long in the hospital it’s a slice of heaven. I did manage to sleep a solid 12 hours uninterrupted and it was everything I had hoped. Aside from that just the little comforts of being home again – wearing real clothes, using a shower with actual water pressure, not worrying about my central line (which they removed!), not hearing the constant beeps and sounds that hospitals are made of. Never mind my mothers cooking and spending time with my family, visits are a lot more enjoyable at my apartment instead of these hospital rooms.

At home it was easier to forget I was sick. It’s hard to lose sight of the fact that you have Leukemia while you’re in the hospital and even at home every time you struggle to stand up or notice your skin is peeling from the chemo – it’s a pretty stark reminder that something is off. But for a few hours watching TV or playing a game with my brother I would honestly forget that I’m now living with cancer. Every time I look in the mirror the bald head is a big reminder but was relaxing to not be smothered with the fact that I have a disease all the time. I’ll admit I was kind of a baby about coming back to the hospital, I was convinced I was going to want to come back and continue with my treatment after a few days at home. I was wrong.

But, here I am. Oh! I did get some of my bone marrow biopsy results back – I’m officially in remission! So thats fun. My next phase of chemotherapy is called Central Nervous System (CNS) Prophylaxis. Even though my spinal fluid and brain have been clear of cancer cells from the beginning there’s no way to guarantee that some cancer cells haven’t crossed the blood-brain barrier and taken up home inside my wonderful brain. So during this stage they’re just going to flood my brain and spinal column with chemotherapy, mostly a drug called Methotrexate which has been part of my treatment already. When I say “flood my brain and spinal column,” I mean flood. Up until now each time I received Methotrexate it was either a 12mg intrathecal injection or up to 50mg intravenously. Tomorrow morning I will receive a 7000mg intravenous injection of Methotrexate. The goal is to load my circulatory system with so much of the drug that a tiny bit of it will brute force it’s way through the blood-brain barrier and hit my brain, then after 24 hours they’ll begin treating me with Leucovorin to help flush the left over methotrexate from my circulatory system. The only reason I can’t do this phase of treatment as an outpatient is because the dosage is so toxic they need to be able to monitor me and check that my body is clearing the drug at the right rate. Sometimes the chemotherapy can be scarier than the Leukemia.

They were nice enough to remove my central line when they discharged me, It was too much of an infection risk outside of the hospital and because of the type of line and it’s placement in my jugular (a major vein) I would’ve needed an RN to come and check the line, flush it and re-dress it each day. Four days without a line was nice but they told me I needed a new one when I was admitted this morning since I’ll be beginning the high-dose Methotrexate tomorrow I’ll need at least two lines – one for the chemotherapy and the other for constant fluids, never mind any supplemental blood products or electrolytes I might need. My first procedure today was the  installation of a PICC line which is inserted on my right forearm at the inside of elbow and has a catheter that runs all the way through my vein to within 2-inches of my heart. Cool. I’m convinced the PICC line is cooler than my previous central line in almost every way, allow me to explain:

PICC line

  • The install site is on my right arm, much more manageable than my throat.
  • Drastically lower risk of infection over any potential alternative line.
  • No surgery – I had the whole procedure done in my room laying in bed.
  • Now that I don’t have lines to run all the way from my neck I may be able to wear real people clothes.
  • I can take this line home with me with minimal infection risk – no more installs every time I get admitted.
  • I don’t have to look at that freaky hole in my neck anymore.
  • Only has 2 ports while my previous central line had 3.
  • Having lines hanging out your arm can get in the way typing/using a mouse.
  • There’s no real way to hide it, if/when I am an outpatient I’ll have the cancer-bald head and IVs dandling from my arm.

If you’d like to see it… You know you do.

I started writing this right after I got back from an MRI – late last night that throbbing headache which i suffered through for a solid month before being diagnosed returned with a vengeance. If you say “headache” more than once in a 30 minute span on this ward  someone will send you for a CT or MRI, they’re big on avoiding internal bleeding on the blood cancer ward. No other symptoms to go along with it (thank gawd*) but right now the solution seems to be to throw pain meds at me until I stop complaining. Not an approach I typically would argue with but after several rounds of Oxycodone and Morphine I just nodded off – woke up when my face hit the keyboard! I’m a huge fan of the HBO show The Wire and I’ve been working my way back through the series while in the hospital, I thought this was a cheap insight into what it must feel like to be Bubbles (a main character who is a Heroin addict). If you haven’t seen The Wire you’re missing out, it’s some truly life changing television if there ever was. List of the awards won by The Wire. I might be shameless but you’ll forgive me when it’s the greatest show you’ve ever seen.

* is “gawd” less blasphemous than the usual? It’s got a nice I’m-from-Boston/I-know-I-sound-like-a-ditz ring to it. I’m not in a position to be pissing anyone off involved in my potential afterlife though. Maybe they’ll think I’m funny?

“I’m up on the roof again
Watchin’ the sparklers dance and play
Up on the roof again
Please don’t take my ladder away”

Song: Up On The Roof Again
Artist: Colonel Les Claypool’s Fearless Flying Frog Brigade

– Austin

    • Doug
    • February 9th, 2010 12:25am

    Wicked IV’s dude, wicked.

    • Jenna
    • February 9th, 2010 12:01pm

    yay remission!

    • Pat
    • February 9th, 2010 2:33pm

    Hey Austin, great news about your first round chemo. Glad to hear about your remission. The whole picc-line thing is a huge improvement over having to get stuck time-after-time.
    I can totally relate to your relief at being able to sleep in your own bed. We sprung for some awesome Sealey pillow-top comfort and now whenever we are away, we are just overjoyed to get home to our own bed.
    My wife Mary and I are big Wire fans too. Got to be the best crime-drama ever made, including such greats at The Godfather trilogy and The Sopranos. And I could not agree more about the Bubbles character. He gets knocked down and shit on many times but he is a real survivor able to make a go with the crummy set of choices his life-style and situation has dealt him. He is one of my favorites as is Omar. I need to watch Season III and IV, which got sort of buried in our Tivo-burned DVD stack. First 2 seasons were terrific and what we saw of III and IV as well. One positive side-effect of having time on our hands is being able to check stuff like that out.
    Best of luck with the next round brother! Been lovin’ how this is heading. If I can stay cold-free for more than a couple of days, will come and visit.
    – Pat

    • Jennie
    • February 9th, 2010 8:02pm


    And that PICC is so badass! …Seriously! Reading this just made me so happy!

    I will also have to start watching The Wire…if its on Netflix

    • Mary
    • March 7th, 2010 5:38pm

    Hey I found your blog through reddit, and I decided to comment when you mentioned the PICC line. About 3 years ago, I had a really bad, really random infection that caused a bloodclot in my jugular vein and I had to have a PICC line. I thought it was pretty fun at first (well once I was out of the hospital) because they had added extra hookups so I had 4, if i remember correctly. I felt like I had an extra arm and i used to wiggle them around to creep out my friends. Also, they’d back up and my friends would freak out that you could see my blood. This just amused me.

    but other than just recounting how easily amused i am by the PICC line, I wanted to say that I used that sports wrap stuff to keep my picc line nodules against my arm so they weren’t flapping around all the time.

    I completely understand that the PICC line seems cool, although I didn’t have a central line to compare to because they didn’t want anything to break pieces of the clot off.

    Best of luck beating the beast, and I will be sure to check back and see how you’re doing! Your writing style makes for a good read.

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