Craig Maloney

Checking In: 2024-03-25

craig — Mon, 25 Mar 2024 15:34:00 -0400

Checking in for 2024-03-25:

Buckle up. This is a big update.

Yesterday I felt like I was going to explode. I compared it to the video game "Dig Dug", which has been an interesting litmus test for how old my doctors / nurses are. I'm not going to sit here chastising folks for not having the same childhood that I did (I find the whole "do these kids know how to use a rotary phone" thing incredibly reductive) but it's been enlightening.
I managed to have a Urinary Tract Infection with a bacteria that normally doesn't show up in the urinary tract. I'm hoping that the cultures come back clear and that they can get things under control because otherwise it can mean the removal of the Smart Port that I have and (curiously enough) I've grown fond of the little bugger. We're awaiting test results for a limited ultrasound echo cardiogram.
I've been having some intense reactions to food as of late. I think that's in-part because of the antibiotics and part because I've exhausted the possibilities for the food here. JoDee had to order the food for my next few meals because it was making me nauseous thinking about it.
The bilirubin count continues to remain high, and the Creatinine is slowly coming down. They're exploring options on how to remove the fluid and get things flowing again, along with trying to figure out why the bilirubin hasn't come down. They're going to do a Magnetic resonance cholangiopancreatography to figure out what's going on down there.
I continue to work with the overwhelm of the situation. Some moments I feel calm and relaxed and other moments where I feel like I'm overwhelmed. Definitely doing more meditation and allowing myself more moments of calm to investigate my thoughts.

More as I know it.

Rush: 2112

craig — Mon, 25 Mar 2024 06:18:00 -0400

A long while back the album 2112 was selected as the Rush album of the week. I listened to this album and had one of those moments of reacquainting that I hadn't had with most of the Rush albums. I legit forgot the track order of this album. That's not to say 2112 is a bad album or even a forgettable album. If anything 2112 is one of the band's most important albums; serving one last taste oft this band if it wasn't commercially successful This was the band saying, plainly, "this is who we are. Now it's your move." When viewed as a document of the band at the time it serves this purpose well. But when it comes to being an album there are some rather weak tracks holding things together.

"2112" is the band's side-long opener and is essential listening. "A Passage to Bangkok" starts off side two, as does "The Twilight Zone". Apparently "The Twilight Zone" was written and recorded in one day to fill out the album and it shows. What was interesting for me was how much I hadn't remembered the side two closing tracks "Lessons", "Tears", and "Something for Nothing". These tracks are actually really strong tracks but the goofiness make it harder for me to remember they're on this album. This is definitely a "me" failing, though.

Hoping to get this feature back into circulation. Stay tuned.

Checking In: 2024-03-24

craig — Sun, 24 Mar 2024 18:47:00 -0400

Checking in for 2024-03-24:

I've spent the last two hours in a lot of pain, so this will be brief:

We're waiting on numbers to go where they need to go for the bilirubin and creatinin. This morning the creatinin was in a decent direction while the bilirubin was a bit higher than before.
There is some bacteria in my blood stream that shouldn't be there. They're running antibiotics through my system but the main concern is that the smart port is somehow compromised. I really hope not because I love that little port. Having it be there has made a lot of procedures better. We'll see how this goes.
I feel like I am bloated from the fluid that has been coming into me. They have me on Oxycodone (nee: Roxicodone, OxyContin) so that has been working its magic, along with some other medication for bloating. The pain level was extreme for me. I tried being present with it but it was overwhelming in the extreme. Thankfully the Oxycodone has been working its magic and taking care of the discomfort.
I'm going to be here for a bit longer while things get sorted out. My parents came to visit today so that was nice. I'm still feeling upbeat and positive but it's definitely been testing me.
Really feeling behind with things. If you're waiting on something from me it's going to take me a bit longer.

More as I know it.

Checking In: 2024-03-23

craig — Sat, 23 Mar 2024 19:39:00 -0400

Checking in for 2024-03-23:

Today I had a repeat of February's procedure. The preliminary results are promising. It appears that the stent that was in there shifted so that it was immediately blocked (which would explain some of the pain that I had in there.) When they added an additional stunt they got bile and pus out through the duct. I'm extremely glad that I got the stent augmented as I feel way better. I'm feeling less fatigued and more focused already.
My kidneys have taken a beating. They have been using albumin (yes, the kind you find in eggs) to mop up some of the fluid that has built up in my legs. I think it has been working because my legs don't feel like they are on fire anymore when I move them around on the hospital bed.
I have a feeling I'll be here a while for observation but that's a good thing. I'm feeling sharp and aware . I'm hoping this brings about more clarity . I'm also hoping that we avoided any other complications that could have arisen from this. Adding kidney failure to my journey is not something I relish, but hopefully my kidneys are resilient enough and my treatment focused enough to mop up a lot of this mess.

More as I know it.

Checking In: 2024-03-22

craig — Fri, 22 Mar 2024 20:25:00 -0400

Checking in for 2024-03-22:

I feel like every day has been a week in disguise. In brief:

I went into emergency yesterday because my creatine levels ere ridiculous on Wednesday. I was hoping I could just re-hydrate myself t better but that was just foolishness. I also wanted to b sure that I got my last dosage of radiation for my liver and complete the treatment. I realized my foolishness after asking the radiology folks if I could still be in the hospital and get treated. Turns out that was the smart because we had some major show this way and I was already at the hospital ready to be wheeled to where I needed to be.
The doctors are working with the notion that this is all reversible, which is helping me to mentally prepare for it all. I'll be having a repeat pf the stent procedure I had in February
this time I am sharing a room rather than having my own private room. I'm getting used to it.
Hopefully this will get things to where they need to be. I've been pretty tired as of late so each day feels like an extra challenge.

More as I know it.

Checking In: 2024-03-19

craig — Tue, 19 Mar 2024 21:21:00 -0400

Checking in for 2024-03-19:

This isn't a full-checkin because there are still so many things up in the air, but I just need o do a quick touch-base. More on each of these as I get some time.

I am on round two f having my liver irradiated. That part has been going well thus far.
I, however, have bee fatigued like hell. That's managed to keep me tired and unable to really blog much.
I thought I was keeping it together but my numbers for my blood were out-of-whack again, so I had a transfusion this afternoon / evening.
That also means that my other blood numbers are in the dangerous for renal failure. I may be back in the hospital on an emergency basis to get my kidneys to not fail.
This is on top of me trying to sort out my high blood pressure reducing drugs.
That, combined with the fatigue, has kept me from being online much.

More as I know it. I've not been trying to be distant on purpose, but it seems whenever I get the opportunity to blog something else comes up. So I need to just fight for everything that I can.

Checking In: 2024-03-12

craig — Tue, 12 Mar 2024 09:30:00 -0400

Checking in for 2024-03-12:

Content warning: fatigue, bodily fluids, plumbing issues,

Ever since I left the hospital on 2024-02-24 I've had a hell of a time find a routine again. The more I learn about bilirubin build-up the more I'm understanding why. Too much bilirubin in your body can not only interrupt system like digestion and sleep, but can also cause your red blood cells to break down prematurely. Now, where did I experience this before. Oh yes, it was when I had to have several transfusions to get the ol' Red Blood Cell Count up to snuff.

Add to this the position of the stent and the reason for the stent (big tumor blocking the bile duct) and it makes wanting to eat a real chore.

Which brings problem the second: digestion. Because my body is busily figuring out other things to eat that makes it incredibly frustrating to determine what is going to play nicely with others and what is going to cause problems. This lead to two instances where I couldn't make it to the bathroom in time before stuff started to happen. That's most frustrating of all. Figuring out in real-time whether you have enough time to make thing happen or don't have enough time to waddle to where you need to go before it's damage control. And more than once it was damage control, especially yesterday where I had two instances of this like perfect bookends to a comedy of errors.

Today of course has our main bathroom out of commission, so we are waiting on someone to come give us more bathroom choices.

And underlying all of this is the tiredness. I get winded easily when I do something simple like "race to the bathroom" or "get cleaned up". More than once my day has started with the best of intentions to have some form of productive day, only to watch it fizzle in naps.

I hope the radiation knocks this out. I'm tired of being unable to even consider doing simple things like blogging with feeling like I need a nap afterward.

If you're waiting on something from me know that I am also waiting on that same thing from me. My capacity is limited, my email in need of triage, and my brain desiring rest.

More as I know it.

Checking In: 2024-03-07

craig — Thu, 07 Mar 2024 08:25:00 -0500

Checking in for 2024-03-07:

I've been trying like hell to fight this but I think I need to realize that for right now I am very, very sick. My blood work is telling me that my liver is intensely unhappy with the current situation and I need some intervention sooner than later. That intervention won't come until the 18th and won't be immediate. It'll probably take the rest of the month to determine if things are working properly. Even then it may be a crapshoot on whether or not it removes the cancer from that area or just gives the cancer somewhere else to go.

My days as of late have been me waking up for a bit, doing a few minor things like taking pills and doing morning constitutionals, and then feeling so wiped out that I head back to bed. Everything about me is exhausted.

I'm not sure how to fix this but I do know how I've been dealing with it. Perhaps that's the best I can do for now.

Checking In: 2024-03-05

craig — Tue, 05 Mar 2024 18:29:00 -0500

Checking in for 2024-03-05:

Today's theme is "I am exhausted". There seems to be another underlying theme that I won't share but you can probably guess by the number of times I've been to the bathroom.

This morning I woke up and got a bowl of cereal. I then promptly went back to bed. I needed to get up to get ready for my oncology appointment so I managed to do that. Because I've been so exhausted I enlisted my dad to help take me to the appointment.

During the appointment with Dr. Jaiyesimi was had a deep conversation. I don't think Dr. Jaiyesimi believes I will get better after the radiation treatments. JoDee and I are a little more optimistic. When I had the radiation for my rectal tumor it knocked it out cold. True, it might come back in some form but at least it wasn't the primary antagonist any longer. That suddenly because my liver tumor, which has resisted each round of treatment like an absolute champ. You have to admire a part of your body that can say "is that all you've got?" repeatedly, even if it is making your life miserable. Dr. Jaiyesimi started talking about palliative care and hospice. I don't think I'm quite ready for those two, but it gives me a sense of what he thinks this disease will do. I'm hopeful that we'll have more options in the coming months and years and I'm unwilling to just throw in the towel yet. That may come later but for now I'm going to fight with whatever I can.

Fighting does enact a cost though. I'm constantly tired. When I got back from my appointment my dad and I sat to drink some coffee together. I was zonked. Usually I have no problem climbing stairs and what-not to make it to my appointment but this time around I couldn't even make it to the car without some help. After dad left I went straight to bed and slept for four hours.

I am not well. I can't keep pretending that I can keep up the pace that I had before. I need to acknowledge the energy that I have and hope that more is on the way after the radiation treatments.

More as I know it.

Checking In: 2024-03-04

craig — Mon, 04 Mar 2024 21:10:00 -0500

Checking in for 2024-03-04:

Still trying to find my energy. I'm getting better about rebuilding my routines but it's difficult for me to get into the swing of looking at my lists and tackling the things that are on there. It's a bit frustrating to see things up there that haven't moved in quite a while. It also feels like the gulf between be being able to think about what I want to do and making that happen has widened a bit since I was in the hospital.

I called the cardiologist about the Losartan, Carvedilol (nee: Coreg), and Amlodipine (nee: Norvasc). Since I stopped taking the Regorafenib (nee: Stivarga, Regonix) my blood pressure has been within normal parameters. Unfortunately it seems that I need to wait until my appointment on March 12th to have someone give me a definitive "yes, this is too much" or "these three in concert are why your blood pressure is normal". I think this is part of why I am fatigued, along with the troubles in my liver. Hoping to get some answers soon.

My parents came over for a bit today, which was nice. I did have to eventually excuse myself to take a nap while they were here. I'm still not able to go a full day without needing a nap.

More as I know it.

Checking In: 2024-03-03

craig — Sun, 03 Mar 2024 22:29:00 -0500

Checking in for 2024-03-03:

Today my goal was to just stay upright for as long as I could before needing naps and the like. I took an afternoon nap but have managed to stay up longer than I thought I could. I'm working on building more energy. I'm finding the most energetic music I own to help motivate me.

This week I just have an appointment with Dr. Jaiyesimi. I have a stress test on Friday that I'm going to beg out of because I'm not at peak performance by any stretch. Also my blood pressure is strangely trending toward normal. I think it might actually be too low now because I'm cold and feel completely drained throughout the day. I'll need to call the cardiologist to determine the safest next steps.

More as I know it.

Rush: Rush

craig — Sun, 03 Mar 2024 18:04:00 -0500

Right from the hard-left pan of Alex's guitar on "Finding my Way" the average Rush fan would know they're in for something different on Rush's self-titled debut album than all of the subsequent albums that followed. Indeed, this album has more "yeah"s and "baby"s than any Rush album since. That's not necessarily bad thing. The debut album shows a potent band ready to break out of the confines of Canada to show the world what they're made of. As a rock album I could see this album sneaking its way into several classic rock playlists without much trouble.

The album is uncomplicated in its approach. You can listen to the album straight through with all eight tracks in around 40 minutes. It doesn't over-stay its welcome in the slightest and feels fresh each time I listen to it. And unlike some artists that disavow their earlier work several songs have appeared in Rush's setlists including What You're Doing, In the Mood, and their breakthrough hit Working Man.

Most Rush fans pick up this album as a kind of bookend for their Rush collection but rarely listen to it. I think that's a bit harsh. Sure, Neil Peart wouldn't join until John Rutsey left the band due to musical differences, health concerns related to his diabetes, and dislike for touring. Neil was clearly a better fit for the band but Rutsey was definitely a competent, solid drummer who got Rush onto the map.

The debut album also highlights the power of the local DJ, where Donna Halper knew her Cleveland audience well enough to know that a song like Working Man would be a hit with a factory town like Cleveland. No Working Man, no quick sales of the album, and possibly no Rush.

And that would be a damn shame.

So raise your glasses high on this album. Every musical journey starts somewhere.

Radiation 2024

craig — Fri, 01 Mar 2024 08:56:00 -0500

The last time I received radiation was in October 2022. Much has changed since then. For starters Dr. Quinn now has a beard and tattoo sleeve of Grateful Dead Tattoos (apparently he was a fan since he saw them with his mom at the questionable age of 6). Another change is that this time we're focusing on the liver in order to knock back the 4-5 cm tumor that is currently blocking the bile duct. This past Tuesday I went in for a consultation and this Thursday was the first of two simulations. They first tried to set me up for contrast, which took a while as there's only one really good vein that everyone likes. There was a slight miscommunication in that I didn't understand the "power port" they wanted and the difference between the "Smart Port" that I have. Eventually things got sorted and I was ready with an IV.

They put me onto a CT Scanner and then proceeded to fill the space with warm foam. This is to ensure that I'm not going anywhere during the procedure. I don't blame them. They're trying to make sure that they accurately hit something about 5cm in size over the course of the next five days. To help this they put a belt over my diaphragm and sealed the whole contraption in film that they then used vacuum pumps to pull out the air in-between.

I then ran through the scans and was released from this contraption.

That's what I can expect each day of my radiation treatment for both the dry-run on the 15th of March and the 18th through the 22nd of March. It's going to be early in the morning, but hopefully I'll see some rapid results. They're giving me 50 Grays of radiation in my liver in a very specific sport so hopefully that'll kill things.

More as I know it.

Checking In: 2024-03-01

craig — Fri, 01 Mar 2024 08:32:00 -0500

Content warning: bodily fluids

Checking in for 2024-03-01:

I've alternated between exhausted and just tired these past few days. This morning I woke up an vomited while having some nausea. Not the kind of morning one would like to have.

Last night I tried taking Oxycodone (nee: Roxicodone, OxyContin) and Lorazepam (nee: Ativan) to help me sleep. I felt like I had a shower-bar in my stomach area that wasn't able to get out. I hope nothing is blocked in there. On the plus side I'm taking advantage of my feeling mostly-OK to get these blog posts out of my head and into electronic form. I'll have one about the radiation procedure (which is coming up on March 18th). Should be fascinating, and I'm hoping it'll knock some of this cancer into the "debugged" category.

There's been a lot of coping that I've had to do as of late to stay in some semblance of productive. Usually it starts with small things that I know I can get done and moving up larger items as my energy allows. Other times it's just attacking the larger items and using the momentum from those to try to power other tasks.

More as I know it.

Designing a Well Lived Life: Checking In (2024 February)

craig — Fri, 01 Mar 2024 08:22:00 -0500

Checking in for February for my "Designing a Well-Lived Life" blogging. This is about making small changes during the year to make larger changes.

February was a pretty carved-up month. The first part of it I was trying to get back on track but my latest hospital say pretty much sealed how the rest of the month was. I've been having more "zero days" where I don't feel I get much above some minor repeating tasks done and spent the rest of the either relaxing or trying to relax.

So with that in mind here's how I landed in February:

Exercise and work on getting more healthy and as cancer-free as possible: Did OK for a few days in February but have completely lost the plot.
Release a storyworld into the wild: Did OK for a few days but not much progress here.
Learn more programming for the Atari machines to get more comfortable creating for them: No progress.
Finish up or hand-off the Pepper&Carrot RPG: No progress here.
Update the Pepper&Carrot Wiki: No progress here.
Meditate: No progress here, though I did use some of my time in the hospital to meditate.
Declutter, simplify, and focus on the essential: No progress here.
Relax my frustrations and be more accepting of things as they are: Anti-progress? At the very least no progress here.
Continue removing debt: Some small progress.
Hang up my hangups - allow myself to be more creative and playful: No progress here.

Hoping to get these back on track in March.

Checking In: 2024-02-28

craig — Wed, 28 Feb 2024 21:57:00 -0500

Checking in for 2024-02-28:

Today I didn't get much done. I was pretty fatigued for most of it, taking naps throughout the day. I didn't even get showered until 15:00, which is extremely late for me. Hoping that tomorrow I can muster up some more energy.

Tomorrow is my radiation simulation. I'll be blogging more about this as I know it.

Of course it's 21:59 and I feel somewhat awake. Going to use this to get a few things done before the fatigue kicks in again.

Checking In: 2024-02-27

craig — Tue, 27 Feb 2024 11:13:00 -0500

Checking in for 2024-02-27:

Managed to get up this morning and stay up. Last night I went to bed around 22:30 after eating a bowl of Corn Chex (call it my comfort food if you must). Pixel didn't bother me most of the night save for a few "I have seen my reflection in my food bowl and it continues to haunt me" episodes throughout the night. But I'm up and dressed and it's before lunch time. I'll take it.

I have my consultation with Dr. Thomas Quinn at 14:00 today to discuss radiation for my liver tumor. I'll blog about that separately when I have more details. Normally I'd be pretty freaked out about this but frankly I just want some progress with this disease. I'm done being afraid of things that I can't control. I noticed this in the hospital as well where I was more resigned to having a stent put into me than worried about it. Of course now I'll have to figure out when I'll be able to get the stent pulled out of me. That's something for future me to worry about when it needs to happen.

AllianceRx is mighty confused that I'm no longer taking Regorafenib (nee: Stivarga, Regonix) any longer. I tried to explain the situation to them but I'm sure it will take them a few phone calls to figure out that I have no open prescriptions with them. I'm not particularly upset about this. I've mentioned that if you hate someone get them specialty prescriptions with AllianceRx. They do a good job of getting them to you but they are hell-bent on ensuring that you have refills and scripts to ship and aren't afraid to call you multiple times a day about the same script. I already hate using the phone on a good day so having to take their calls to tell them to please call off the figurative dogs and leave me in peace is not my idea of fun.

Managed to get some time in on my meaningful work. Hoping this continues throughout the week.

More as I know it.

Checking In: 2024-02-26

craig — Mon, 26 Feb 2024 21:27:00 -0500

Checking in for 2024-02-26:

Last week my intentions got completely blown out of the water with the jaundice and high bilirubin count that sent me to the hospital. I'm currently working on getting back to my routines as much as I can. It's taking a bit to get myself back on track. Tomorrow I have a consultation with Dr. Thomas Quinn about the radiation to try to shrink the tumor that is currently blocking my bile duct. Hoping to have some news for tomorrow's check-in.

I've been feeling a bit fatigued lately. Yesterday I went to bed at 20:00 and woke up around 6:00. After breakfast I went back to bed for about an hour. I'm still on a hospital schedule. They would wake me up around 6:00 for vitals and blood tests. So I need to reconfigure myself to a "normal" schedule.

This is a long way to say that my intention this week is to work on returning to "normal", even though "normal" is going to be fleeting. But that seems to be the new "normal"

More as I know it.

Rush: Counterparts

craig — Mon, 26 Feb 2024 14:23:00 -0500

This past week my random Rush selecting dingus selected Counterparts as the album of the week. This was the last album that released while I was in college so it has a special place in my heart for reminding myself of that period. Counterparts was also a much heavier and more guitar-driven album than Presto or Roll the Bones. It definitely felt like a different period in Rush's sound.

I listened to this album while I was in the hospital (which was a bit of a feat since hospitals are not known for being the best places for listening to music. I won't do a track-by-track breakdown of the album since I think every track on this album is fantastic and raw. It also continues the trend of albums having an underlying theme to them. The theme-current in this one is primarily about relationships and how they are all a bit of give-and-take. It also highlights the folks in our lives that do great things in small spaces that nobody will ever hear about, even if it's just staying alive while everything is falling apart.

Overall I'm glad to have given this a re-listen. It was the perfect album for this week, and I still have bits of it flowing through my brain as little ear worms. That's the mark of a great album for me.

The listening saga continues.

Checking In: 2024-02-25

craig — Sun, 25 Feb 2024 16:29:00 -0500

Checking in for 2024-02-25:

Yesterday I was released from the hospital. The stent didn't solve the issue, unfortunately, and my bilirubin was at 10.9 as of the last blood draw. So we'll need to take another approach. I have a note on my next actions list to call Dr. Quinn the radiologist to get scheduled for radiation on my liver tumor. This is something that Dr. Jaiyesimi has tried to avoid as radiation can be pretty hard on the body. The last time I had radiation I was intensely sick. That was on the rectal tumor and one of my lymph nodes. The liver makes this even more tricky as it is pretty central to a lot of systems in the body (filtration, digestion, etc.). I'll know more after my consultation (which will hopefully be on Tuesday).

Hospitals don't really allow for hygiene, though I was able to wipe down during my stay. When I got home I got into the shower (after a little bit of puttering around the house and on the computer). I then took a nap. My sister-in-law came over briefly to see how I was doing and I made a brief appearance between naps.

I was sent home with some powerful painkillers for my stent (Oxycodone (nee: Roxicodone, OxyContin) and Fentanyl). It's a little odd coming home with drugs that have featured prominently in headlines over the past few years. I've had to take the Oxycodone only a couple of times, and am trying to keep it that way. I'd prefer to view it as a tool and not a life-line.

Today I've been resting and relaxing. We watched the Detroit Symphony Orchestra in their return performance with Alisa Weilerstein. It was a good concert. I love seeing the DSO.

More as I know it.