Craig Maloneyhttps://decafbad.net/2024-03-12T09:30:00-04:00More than you cared to knowChecking In: 2024-03-122024-03-12T09:30:00-04:002024-03-12T09:30:00-04:00craigtag:decafbad.net,2024-03-12:/2024/03/12/checking-in-2024-03-12/<p>Checking in for 2024-03-12:</p>
<p>Content warning: fatigue, bodily fluids, plumbing issues, </p>
<p>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 <a href="https://en.wikipedia.org/wiki/Bilirubin#Toxicity">bilirubin</a> in your body can not …</p><p>Checking in for 2024-03-12:</p>
<p>Content warning: fatigue, bodily fluids, plumbing issues, </p>
<p>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 <a href="https://en.wikipedia.org/wiki/Bilirubin#Toxicity">bilirubin</a> 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.</p>
<p>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.</p>
<p>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.</p>
<p>Today of course has our main bathroom out of commission, so we are waiting on someone to come give us more bathroom choices.</p>
<p>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.</p>
<p>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. </p>
<p>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.</p>
<p>More as I know it.</p>Checking In: 2024-03-072024-03-07T08:25:00-05:002024-03-07T08:25:00-05:00craigtag:decafbad.net,2024-03-07:/2024/03/07/checking-in-2024-03-07/<p>Checking in for 2024-03-07:</p>
<p>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 …</p><p>Checking in for 2024-03-07:</p>
<p>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.</p>
<p>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.</p>
<p>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.</p>Checking In: 2024-03-052024-03-05T18:29:00-05:002024-03-05T18:29:00-05:00craigtag:decafbad.net,2024-03-05:/2024/03/05/checking-in-2024-03-05/<p>Checking in for 2024-03-05:</p>
<p>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.</p>
<p>This morning I woke up and got a bowl of cereal. I then promptly …</p><p>Checking in for 2024-03-05:</p>
<p>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.</p>
<p>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.</p>
<p>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.</p>
<p>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. </p>
<p>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.</p>
<p>More as I know it.</p>Checking In: 2024-03-042024-03-04T21:10:00-05:002024-03-04T21:10:00-05:00craigtag:decafbad.net,2024-03-04:/2024/03/04/checking-in-2024-03-04/<p>Checking in for 2024-03-04:</p>
<p>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 …</p><p>Checking in for 2024-03-04:</p>
<p>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.</p>
<p>I called the cardiologist about the <a href="https://en.wikipedia.org/wiki/Losartan">Losartan</a>, <a href="https://en.wikipedia.org/wiki/Carvedilol">Carvedilol</a> (nee: Coreg), and <a href="https://en.wikipedia.org/wiki/Amlodipine">Amlodipine</a> (nee: Norvasc). Since I stopped taking the <a href="https://en.wikipedia.org/wiki/Regorafenib">Regorafenib</a> (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.</p>
<p>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.</p>
<p>More as I know it.</p>Checking In: 2024-03-032024-03-03T22:29:00-05:002024-03-03T22:29:00-05:00craigtag:decafbad.net,2024-03-03:/2024/03/03/checking-in-2024-03-03/<p>Checking in for 2024-03-03:</p>
<p>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 …</p><p>Checking in for 2024-03-03:</p>
<p>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.</p>
<p>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.</p>
<p>More as I know it.</p>Rush: Rush2024-03-03T18:04:00-05:002024-03-03T18:04:00-05:00craigtag:decafbad.net,2024-03-03:/2024/03/03/rush-rush/<p>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 <a href="https://en.wikipedia.org/wiki/Rush_(Rush_album)">debut album</a> than all of the subsequent albums that followed. Indeed, this album has more "yeah"s and "baby"s than any Rush album …</p><p>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 <a href="https://en.wikipedia.org/wiki/Rush_(Rush_album)">debut album</a> 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.</p>
<p>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.</p>
<p>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.</p>
<p>The debut album also highlights the power of the local DJ, where <a href="https://en.wikipedia.org/wiki/Donna_Halper">Donna Halper</a> 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.</p>
<p>And that would be a damn shame.</p>
<p>So raise your glasses high on this album. Every musical journey starts somewhere.</p>Radiation 20242024-03-01T08:56:00-05:002024-03-01T08:56:00-05:00craigtag:decafbad.net,2024-03-01:/2024/03/01/radiation-2024/<p>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 …</p><p>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.</p>
<p>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.</p>
<p>I then ran through the scans and was released from this contraption.</p>
<p>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.</p>
<p>More as I know it.</p>Checking In: 2024-03-012024-03-01T08:32:00-05:002024-03-01T08:32:00-05:00craigtag:decafbad.net,2024-03-01:/2024/03/01/checking-in-2024-03-01/<p>Content warning: bodily fluids</p>
<p>Checking in for 2024-03-01:</p>
<p>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.</p>
<p>Last night I tried taking <a href="https://en.wikipedia.org/wiki/Oxycodone">Oxycodone</a> (nee: Roxicodone, OxyContin) and …</p><p>Content warning: bodily fluids</p>
<p>Checking in for 2024-03-01:</p>
<p>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.</p>
<p>Last night I tried taking <a href="https://en.wikipedia.org/wiki/Oxycodone">Oxycodone</a> (nee: Roxicodone, OxyContin) and <a href="https://en.wikipedia.org/wiki/Lorazepam">Lorazepam</a> (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.</p>
<p>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.</p>
<p>More as I know it.</p>Designing a Well Lived Life: Checking In (2024 February)2024-03-01T08:22:00-05:002024-03-01T08:22:00-05:00craigtag:decafbad.net,2024-03-01:/2024/03/01/designing-a-well-lived-life-checking-in-2024-february/<p>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.</p>
<p>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 …</p><p>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.</p>
<p>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.</p>
<p>So with that in mind here's how I landed in February:</p>
<ul>
<li>
<p>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.</p>
</li>
<li>
<p>Release a storyworld into the wild: Did OK for a few days but not much progress here.</p>
</li>
<li>
<p>Learn more programming for the Atari machines to get more comfortable creating for them: No progress.</p>
</li>
<li>
<p>Finish up or hand-off the Pepper&Carrot RPG: No progress here.</p>
</li>
<li>
<p>Update the Pepper&Carrot Wiki: No progress here.</p>
</li>
<li>
<p>Meditate: No progress here, though I did use some of my time in the hospital to meditate.</p>
</li>
<li>
<p>Declutter, simplify, and focus on the essential: No progress here.</p>
</li>
<li>
<p>Relax my frustrations and be more accepting of things as they are: Anti-progress? At the very least no progress here.</p>
</li>
<li>
<p>Continue removing debt: Some small progress.</p>
</li>
<li>
<p>Hang up my hangups - allow myself to be more creative and playful: No progress here.</p>
</li>
</ul>
<p>Hoping to get these back on track in March.</p>Checking In: 2024-02-282024-02-28T21:57:00-05:002024-02-28T21:57:00-05:00craigtag:decafbad.net,2024-02-28:/2024/02/28/checking-in-2024-02-28/<p>Checking in for 2024-02-28:</p>
<p>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.</p>
<p>Tomorrow is my …</p><p>Checking in for 2024-02-28:</p>
<p>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.</p>
<p>Tomorrow is my radiation simulation. I'll be blogging more about this as I know it.</p>
<p>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.</p>Checking In: 2024-02-272024-02-27T11:13:00-05:002024-02-27T11:13:00-05:00craigtag:decafbad.net,2024-02-27:/2024/02/27/checking-in-2024-02-27/<p>Checking in for 2024-02-27:</p>
<p>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 <a href="https://web.archive.org/web/20230401000000*/https://songmeanings.com/songs/view/44916/">comfort food</a> if you must). Pixel didn't bother me most of the night save for a few "I …</p><p>Checking in for 2024-02-27:</p>
<p>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 <a href="https://web.archive.org/web/20230401000000*/https://songmeanings.com/songs/view/44916/">comfort food</a> 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.</p>
<p>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.</p>
<p><a href="https://alliancerxwp.com/">AllianceRx</a> is mighty confused that I'm no longer taking <a href="https://en.wikipedia.org/wiki/Regorafenib">Regorafenib</a> (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.</p>
<p>Managed to get some time in on my meaningful work. Hoping this continues throughout the week.</p>
<p>More as I know it.</p>Checking In: 2024-02-262024-02-26T21:27:00-05:002024-02-26T21:27:00-05:00craigtag:decafbad.net,2024-02-26:/2024/02/26/checking-in-2024-02-26/<p>Checking in for 2024-02-26:</p>
<p>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 …</p><p>Checking in for 2024-02-26:</p>
<p>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.</p>
<p>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.</p>
<p>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"</p>
<p>More as I know it.</p>Rush: Counterparts2024-02-26T14:23:00-05:002024-02-26T14:23:00-05:00craigtag:decafbad.net,2024-02-26:/2024/02/26/rush-counterparts/<p>This past week my random Rush selecting dingus selected <a href="https://en.wikipedia.org/wiki/Counterparts_(Rush_album)">Counterparts</a> 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 …</p><p>This past week my random Rush selecting dingus selected <a href="https://en.wikipedia.org/wiki/Counterparts_(Rush_album)">Counterparts</a> 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.</p>
<p>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.</p>
<p>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.</p>
<p>The listening saga continues.</p>Checking In: 2024-02-252024-02-25T16:29:00-05:002024-02-25T16:29:00-05:00craigtag:decafbad.net,2024-02-25:/2024/02/25/checking-in-2024-02-25/<p>Checking in for 2024-02-25:</p>
<p>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 …</p><p>Checking in for 2024-02-25:</p>
<p>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).</p>
<p>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.</p>
<p>I was sent home with some powerful painkillers for my stent (<a href="https://en.wikipedia.org/wiki/Oxycodone">Oxycodone</a> (nee: Roxicodone, OxyContin) and <a href="https://en.wikipedia.org/wiki/Fentanyl">Fentanyl</a>). 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.</p>
<p>Today I've been resting and relaxing. We watched the Detroit Symphony Orchestra in their return performance with <a href="https://en.wikipedia.org/wiki/Alisa_Weilerstein#">Alisa Weilerstein</a>. It was a good concert. I love seeing the DSO.</p>
<p>More as I know it.</p>Checking In: 2024-02-232024-02-23T20:10:00-05:002024-02-23T20:10:00-05:00craigtag:decafbad.net,2024-02-23:/2024/02/23/checking-in-2024-02-23/<p>Checking in for 2024-02-23:</p>
<p>Today was eventful.</p>
<p>Last night I got some fitful sleep. I'm feeling pressure, pain, and discomfort around where the stent is. This means that I'll probably be going in for radiation treatments to try to shrink the tumor that is blocking the bile duct of my …</p><p>Checking in for 2024-02-23:</p>
<p>Today was eventful.</p>
<p>Last night I got some fitful sleep. I'm feeling pressure, pain, and discomfort around where the stent is. This means that I'll probably be going in for radiation treatments to try to shrink the tumor that is blocking the bile duct of my liver. The last time I got radiation it was successful but really made me sick (I referred to what happened as "nuclear shits"). So that is going to be something I'll need to work around and hopefully be able to address.</p>
<p>My bilirubin count went up today. That prompted several schools of thought on my treatment. Dr. Jaiyesimi was of the mind that I could convalesce better at home rather than the hospital. The G.I. team wanted to keep me under observation. There were a lot of texts flying between both sets of doctors and the nurse attending to me. Finally JoDee went over to Cancer Care Associates and asked what was going on and asked Dr. Jaiyesimi to please explain why I was being discharged. Like a true physicist she broke the Gordian Knot. I'm staying one more night for observation. Her visit was also prompted by the lack of pain medication (the script hadn't shown up at the Meijer Pharmacy).</p>
<p>All the while I was practicing trying to be present and not sick. Fortunately I was able to get some <a href="https://en.wikipedia.org/wiki/Ondansetron">Ondansetron</a> (nee: Zofran) to help with that. The nurse asked me to order dinner and even looking at the menu made me nauseous.</p>
<p>It's going to be an interesting March. I'm going to need to keep myself present and work with the moments that I can work and be OK with the moments when I can't. This week has been a practice ground for me to rest and now it's time to put that practice into motion.</p>
<p>More as I know it.</p>Checking In: 2024-02-222024-02-22T19:58:00-05:002024-02-22T19:58:00-05:00craigtag:decafbad.net,2024-02-22:/2024/02/22/checking-in-2024-02-22/<p>Content warning: Discussion of hospital stay, procedure, and graphic images in the links.</p>
<p>Checking in for 2024-02-22:</p>
<p>The procedure went well for my <a href="https://en.wikipedia.org/wiki/Endoscopic_retrograde_cholangiopancreatography">Endoscopic retrograde cholangiopancreatography</a>. I was a little doppy when I woke up from the anesthesia (I think I said something along the lines of "Teletubby go bye …</p><p>Content warning: Discussion of hospital stay, procedure, and graphic images in the links.</p>
<p>Checking in for 2024-02-22:</p>
<p>The procedure went well for my <a href="https://en.wikipedia.org/wiki/Endoscopic_retrograde_cholangiopancreatography">Endoscopic retrograde cholangiopancreatography</a>. I was a little doppy when I woke up from the anesthesia (I think I said something along the lines of "Teletubby go bye bye" when they were wheeling me out to come back to the room). I was on a liquid diet for dinner, breakfast, and lunch. Dinner tonight was "Soft G.I." which meant I could have food that was not too fibrous. I over-ate pretty hard for that one.</p>
<p>They're keeping me here for observation so I'm not expecting to be released any time soon. They're going to make sure that my bilirubin is trending downward in an appreciable way. The only way to do that is with blood tests, and since it takes a wile for the liver to grab the loose bilirubin it'll take a while for things to return to normal.</p>
<p>I'll need to have the stent replaced in two months. Hopefully in the interim I can have something done with the tumor that is pressing on the bile duct. More as I know it on that front.</p>
<p>Nature is definitely healing. I'm feeling a little tired but was able to get a full night's sleep last night.</p>
<p>I'm still committing to rest to let my body heal as much as it can.</p>
<p>More as I know it.</p>Checking In: 2024-02-212024-02-21T07:56:00-05:002024-02-21T07:56:00-05:00craigtag:decafbad.net,2024-02-21:/2024/02/21/checking-in-2024-02-21/<p>Content warning: Discussion of hospital stay, procedure, and graphic images in the links.</p>
<p>Checking in for 2024-02-21:</p>
<p>Today is going to be a bit of a whirlwind. I have my <a href="https://en.wikipedia.org/wiki/Endoscopic_retrograde_cholangiopancreatography">Endoscopic retrograde cholangiopancreatography</a> today. Hopefully that will be on time. The procedure is to do an endoscopy to the small …</p><p>Content warning: Discussion of hospital stay, procedure, and graphic images in the links.</p>
<p>Checking in for 2024-02-21:</p>
<p>Today is going to be a bit of a whirlwind. I have my <a href="https://en.wikipedia.org/wiki/Endoscopic_retrograde_cholangiopancreatography">Endoscopic retrograde cholangiopancreatography</a> today. Hopefully that will be on time. The procedure is to do an endoscopy to the small bowel where they will make an incision into the bile duct. From there they'll traverse the bile duct to see where the obstruction is and either put in a plastic stent or a metal stent (depending on what they see there). Best case is they can use the stent to expand the duct. Worst case is the presence of stones which can cause infection. But yeah, this tiny little dingus is going to try to repair my bile duct. Modern medicine is pretty amazing.</p>
<p>I had some visitors yesterday. JoDee was here for most of the day keeping me company. My parents dropped by, as did one of the nurses from Cancer Care Associates (Hi, Kim!). She told me that the other nurses wanted to know how I'm doing which was very sweet. Truth be told I'm feeling pretty calm about all of this. Usually I'm pretty "hair on fire" about a lot of things but this just feels like something natural to help with complications from my cancer. We knew this would come eventually, and I'm grateful for the speed at which D. Jaiyesimi was able to get me admitted to the hospital. I literally walked from his office over to the hospital, registered, and walked directly into my room. I need to learn that when push comes to shove that folks have my back on this journey. I'm not alone in this.</p>
<p>I'm doing this check-in early because I'm not sure when I'll have a chance later on. Also I can't have any fluids or meals before the procedure since midnight so making this post is helping me to focus on other things.</p>
<p>More as I know it.</p>Checking In: 2024-02-202024-02-20T14:34:00-05:002024-02-20T14:34:00-05:00craigtag:decafbad.net,2024-02-20:/2024/02/20/checking-in-2024-02-20/<p>Content warning: describes hospital stay and upcoming procedure.</p>
<p>Checking in for 2024-02-20:</p>
<p>I spent the night at the hospital. That's not a bad thing as I can sleep pretty much anywhere. I started fading into sleep around 21:00 but unfortunately that is when the nurse came by to ask …</p><p>Content warning: describes hospital stay and upcoming procedure.</p>
<p>Checking in for 2024-02-20:</p>
<p>I spent the night at the hospital. That's not a bad thing as I can sleep pretty much anywhere. I started fading into sleep around 21:00 but unfortunately that is when the nurse came by to ask some questions about my discharge and other matters. And they managed to take my blood pressure around 22:00 as well. But outside of that it was pretty peaceful.</p>
<p>Tomorrow they're going to do a <a href="https://en.wikipedia.org/wiki/Endoscopic_retrograde_cholangiopancreatography">Endoscopic retrograde cholangiopancreatography</a> or ERCP for short (warning: page has graphic imagery). Basically they are going to take a camera gizmo dingus and do an endoscopy into the small bowel. It will then cut a hole into the bile duct where they will observe the duct to see where the obstruction is and if it needs a stent. If it does need a stent they can decide if it'll need a plastic (temporary) stent or a metal (more permanent, less supple) stent. So that will be done in the afternoon. Hoping that it will clear the obstruction with no complications.</p>
<p>It's been interesting being over 50 in the hospital, especially with cancer. The number of folks that have been in here asking questions like "how many steps to the entrance of your house" and "how many levels are in your house" is somewhat amusing. Obviously they're trying to figure out if I need physical therapy or occupational therapy but quite simply I'm able to still do and manage things. I had a physical therapist take me "around the block" and go up some stairs. When he asked me to go back down the stairs I started to go down them backwards. The bed exercises were adorable as well. After which I asked JoDee if I should have gotten my drum sticks out and played the intro to "hot for teacher" using the bed as a drum throne. I know they're just doing their job but there's a stark difference between someone who needs the help and someone like myself who just happens to have cancer and needs to not have cancer.</p>
<p>Hopefully I can ride the "normal" train for a very long time.</p>
<p>More as I know it.</p>Checking In: 2024-02-192024-02-19T19:26:00-05:002024-02-19T19:26:00-05:00craigtag:decafbad.net,2024-02-19:/2024/02/19/checking-in-2024-02-19/<p>Checking in for 2024-02-19:</p>
<p>Last week my intention was to work on my meaningful work for 30 minutes a day. I didn't do so great with this because of my health. This leads into the next part of this. I'm currently in a hospital bed at Beaumont. The jaundice that …</p><p>Checking in for 2024-02-19:</p>
<p>Last week my intention was to work on my meaningful work for 30 minutes a day. I didn't do so great with this because of my health. This leads into the next part of this. I'm currently in a hospital bed at Beaumont. The jaundice that I was experiencing was because of heightened levels of bilirubin. Lately they've been in the 1.x range. Today it was in the 12.18 range. I literally went in for an appointment at 10:40 to see Dr. Jaiyesimi and was then admitted to the hospital while I was in his office. They did an ultrasound and CAT scan (of which the results are in) and are figuring out next actions based on that. I don't feel awful other than looking like a new breed of Oompa Loompa. We'll see what the results bring.</p>
<p>Dr. Jaiyesimi pulled me off of the <a href="https://en.wikipedia.org/wiki/Regorafenib">Regorafenib</a> (nee: Stivarga, Regonix). I'm not sure if that is temporary or what but it's yet-another drug that has not worked for me. I'm hoping there are more chances for me to fight this disease but right now I am taking it as just another datapoint in the progression of my disease.</p>
<p>Today was a weird day overall. I got breakfast, got cleaned up, called Cancer Care Associates about the jaundice, had an appointment for 10:40, and met with the cardiologist at 9:00 for a phone visit. It was super productive up until I was sent to the hospital. Funny thing is it feels a bit like relief to know that something will be done about this. Like I said, I don't know what in particular but still...</p>
<p>More as I know it. Right now I'm looking to catch up and get some rest. That is my intention this week as I'm not sure what will be coming later on.</p>Checking In: 2024-02-182024-02-18T19:33:00-05:002024-02-18T19:33:00-05:00craigtag:decafbad.net,2024-02-18:/2024/02/18/checking-in-2024-02-18/<p>Content warning: bodily functions</p>
<p>Checking in for 2024-02-18:</p>
<p>Still seeing signs of jaundice in my eyeballs so am going to call Cancer Care Associates to let them know and find out what our next actions will be. In some ways I feel like it's my fault that these things are …</p><p>Content warning: bodily functions</p>
<p>Checking in for 2024-02-18:</p>
<p>Still seeing signs of jaundice in my eyeballs so am going to call Cancer Care Associates to let them know and find out what our next actions will be. In some ways I feel like it's my fault that these things are happening. I know that's not true but it's hard not to take this personally. Like, here are all of these folks working hard to help keep you alive and healthy and you can't cut it. That's a lot of years of negative self-talk coming to the fore-front. I'm also dreading making this call because I feel like it's just going to be the beginning of a spiral of out-of-control-ness. Again, I don't know if this will be the case or not, but it's just my head trying to make sense of it all.</p>
<p>What I'm hoping is that this is just a known side-effect of the <a href="https://en.wikipedia.org/wiki/Regorafenib">Regorafenib</a> (nee: Stivarga, Regonix). What I'm not hoping for is what happened when we determined that the Lonsurf wasn't working, which was an immediate discontinuation of the drug. I like to have options for treatment and finding the doors for treatment slamming shut is suboptimal. Then again, if it's making my liver dysfunctional then that's not good either. Again, I need to trust Dr. Jaiyesimi and the tumor board to make the right call.</p>
<p>Last night I had a round of diarrhea around 4:00. That took a lot out of me (pun not intended). I can't tell if the fatigue I'm having is because of the drugs, the state of my liver, or my disrupted sleep. Of course it could be a combination of all of this.</p>
<p>I managed to get my weekly review done and managed to get a few things done today. Hoping to continue this tomorrow.</p>
<p>More as I know it.</p>