That was fast. No question that it was withdrawal.

Damn. Gonna be on this stuff for a long time. At least we’re aware of it now.

As if I haven’t had enough problems with meds before.

–Reid.

—————-
Now playing: Weezer – We Are All On Drugs
via FoxyTunes

Welp. As of this morning, I’m back up to 5mg on the methadone. I’m back up to my original dosing of Lyrica, too.

Lousy night last night. I guess the Lyrica had been doing something because my feet hurt like hell after a few days at half dose.

This sucks–not even because it was a neat fleeting thought to be off analgesics, but because being off of them has made me feel so miserable. Certain side effects now don’t seem so bad compared to others.

–Reid.

As I reported a few days ago, I finally went off Methadone completely on Monday after about half a year of weening off the powerful narcotic painkiller. I started at about 20mg four times a day when I got out of the hospital last May, and by this past Sunday I was down to 5mg once a day. I was super psyched on Monday, because the less pills I have to take, and especially the fewer narcotics I have to take, the more I feel like I’m moving on in the right direction with this whole process.

Monday passed with some stomach problems that could just as easily be attributed to what I ate on Sunday as to anything else. Tuesday night, however, I spent the whole night unable to sleep. My body, which teased me with constant yawning, would not relent and engage in actual sleep. This made me quite irritable. More so than I’ve been over the past few weeks.

I took a nap on Wednesday afternoon after work to catch up on some sleep, but awoke in a start after only half an hour in a pool of sweat (note: I am not normally a sweaty person at all). I was shaking. My body was fluctuating between being bright red as I felt flushed and being covered with goosebumps as I got the chills. I wanted to jump out of my skin. My heart was racing, and overall, I just felt icky.

I took some Benedryl and Ativan and the symptoms subsided enough so that I could fall asleep.

Come morning, the symptoms had returned and worse. Today, along with all the other stuff, my nose was all stuffed up. My body was jolting and contorting into weird positions by its own accord. I was freaking out. Unable and unwilling to take any more self abuse, I went into the clinic. As you’ve probably figured out by now, I was having withdrawal. From a mere 5 frickin’ mg of Methadone a day. Five! Milligrams!!!

Anyway, we came up with a plan to continue weening below 5 mg over the next month, and they gave me 5mg on the spot. Between this new plan of going to 2.5mg then tapering even lower and actually getting my fix, I felt much better almost instantly. In looking back at the past few weeks, there were actually quite a lot of signs that this was going to happen but we didn’t really put them together. It was a bunch of semi-annoying stuff like being more irritable and slightly sweaty here and there, and get flushed once in a while. We just didn’t have any clue about it.

I think the wisest quote of the day is from Amy, who told me that I’m “not going to be a hero or any stronger by going off these meds fast”. I think I got caught up with looking for benchmarks of success since I’ve been feeling so slow in recovering from the radiation. In the end, though, it’s better to get done with this whole thing in the smartest–not the fastest–way possible.

–Reid.

Looking to sell:

Retro 1983 Caucasian male body, out of package, slightly used, played with by children, toyed with by gods

Minor wear and tear visible, most has been carefully repaired, some seam lines still visible, lost a little of original stuffing, large burn on back

Customized ports in head and chest

Features different EXCITING symptoms daily (fun for pre-meds, med students, schadenfreude enthusiasts)

Missing original hair

Overall grade VF+

Bid today, this is a deal at any price!

–Reid.

P.S. PayPal only.

Firstly, I’m going off Lyrica. I’m going to ween off over the next two weeks. Hopefully this will solve a bunch of annoying symptoms I’ve been having lately (see: this and ignore “euphoria”). I think, while I’m still having neuropathies in my toes, I haven’t really had any neuropathic pain for quite some time. So this is very exciting.

Secondly, and even more exciting: I’m coming to New York soon. Probably next week.

–Reid.

Before I went through my radiation treatment, a nurse at Children’s told me about her own experience with radiation: “There will be days you feel like you can’t move because you’re so tired.”

That’s today for me. Not feeling sick at all (as I have been off and on recently), but rather so fatigued that it was hard to get up to go to the bathroom and impossible to move three feet to turn off the local news. Oh, the humanity.

To bed before 8. This is how I was punished when I was six.

Other brief items of interest: I’m officially, 100% off of methadone. I think I might have started weening off of it towards the end of the summer, so I feel quite accomplished (and not in pain! yay!) to be off it. This means I’m off of preventative narcotics altogether, which makes me very happy.

That said, I’m not completely off of preventative painkillers, as I’m still on a very low dose of Lyrica, which is non-narcotic. I’ve been kept on that because once you go off it completely, it doesn’t work if you try to go on it again. So I’m on a low dose so it can be upped again if need be. It’s the best (or only? can that be right?) treatment for neuropathic pain, which I struggled with a lot in the hospital due to my sworn nemesis Vincristine. Now that I think about it though, and look at this litany of side effects (which would explain a lot of things), it might be just about time to get off Lyrica, too.

Finally, I’m going to start keeping a paper journal every day. Sort of a reverse calendar. Hell, let’s just call it a reverse calender because that sounds cool. I’ll add in calender-length blurbs about exactly what I did during the day. For instance: “Woke, 8AM”, “Breakfast, 8:30AM”, and so on. Melanie suggests that this will help with memory concerns. At the very least, I won’t be startled when people seem to know more about what I’ve been doing than I do.

Now if I can just remember where I put that journal…

–Reid.

Somehow I neglected to mention here that I’m now in Maintenence, the two-and-a-half year, yet totally manageable, ending phase of my chemotherapy treatment. I switched from weekly chemo infusions to monthly infusions this month. I have to take some chemo pills at home, but overall, it is a major downshift in the kind of treatment that has been so difficult over the past year. Once I’m into the swing of it, I will be able to continue Maintenence out in NYC (ironically at the NYU Hospital, which I used to live 15 feet away from).

Supposedly, three months into Maintenance is “when people start to feel like themselves again”.

Can’t wait.

–Reid.

—————-
Now playing: Red Hot Chili Peppers – Californication
via FoxyTunes

My one month off of radiation checkup with the radiation oncologist went well. Every symptom I thrust forward from the past month was met with a solid parry of, “That’s normal for one month out–if it’s still happening in six, I’ll be worried”.

As much comfort as I’m glad this provided my mom, I was sort of shaken by the realization that I am having more memory issues than I had previously realized. I’ve realized for a few weeks that I’m having trouble thinking quite as fast as normal–slower than normal “chemo brain” thinking, even. Words that I know I know have been harder to find, and names, which I’m terrible with anyway, well, forget it (that’s what I’ve done).

Like most of this process, there is a lot of frustration involved. I was relieved–if only momentarily–to learn that I passed a short term memory test with flying colors, 30/30. That said, I couldn’t remember details about my own life from the past few weeks. I had been tipped off about this when I asked Amy something about the past few weeks and she told me she had only left a few days ago. That in particular made me uncomfortable, because the same exact thing happened after my psychosis in April: my concept of time was challenged by almost the same conversation with Amy. That sickening feeling of only very slowly becoming aware that I was missing pieces of my memory because of things everyone else took it for granted that I remembered.

I’ve been in a handful of physically scary situations in my lifetime. Right up there with those situations where I thought I might die or get hurt, there’s a scary non-physical situation that has haunted me for many years now. Seeing my great-grandfather, whom I was very close to, go through all the phases of Alzheimer’s, knowing that there wasn’t much we could do for him, and just how frustrated he was as he knew he was losing his ability to think straight. I don’t want to live like that. I lived like that for a few days in April and it was hell.

Dr. Liu is not concerned though. Of course. So I’ll wait six months, and hopefully I will look back and remember this with clarity.

Speaking of looking back, we just celebrated one year since beating the odds. Whether you prayed for me, and asked others to do so like my cousin Martin did, or whether you made a series of videos about me in NYC like Better Than The Machine did, or whether you just came and sat with me, wiping off my brow after my dad had gone home, like Matt McDole did, or if you just heard about who I was through our videos and you dropped a nice note, or if you’ve known me a long time and just thought about me, it all means a great deal to me.

I did not have a good chance to survive, but I had the strength and wisdom you have all given me, and here I am today. Thank you. Everything matters.

–r.

Better Than The Machine released a brand new video today called “How To Reassure”. It’s part of the Iowa Training Films series that we started back when I was in town (the good ol’ days, y’know… 2007). I think it’s my favorite entry into the series so far.

Paul did a great job updating the look of the series while still maintaining the intentionally crummy feel. I have to commend his skills of an artist. I’m going to need to brush up on my After Effects abilities to be of much use in the post-filming department! Even stuff that Paul makes look crummy outdoes what I’ve done. I’m very impressed.

I also want to tip my hat to the writer: nice work, Matt Gallo! We’re going to write something soon. It’s on the tip of my brain. Mule parents tell their mule kids that they’re not actually their parents and that their parents are actually of a different species?

Yeah, we’ll figure something out.

–Reid.

—————-
Now playing: The Breeders – Happiness Is a Warm Gun
via FoxyTunes

It’s already been said so beautifully, how could I possibly try to top this?

Seriously.

–Reid.