Already I Get Out of the Update Habit

Monday and Tuesday were a lot like Sunday, I guess. I didn't go to work and wasn't really feeling all that great. Wednesday, however felt pretty good.

I was feeling a bit better toward Tuesday night. And then I'd gotten a pretty fair night's sleep . I was thinking I'd finally be ready to go to work on Wednesday. When I woke up about 7:30 I was still feeling pretty good, but tired. So I snoozed a bit more. When I got up at 9, though, my stomach was rather upset. After dealing with that for a while, I went back to bed to lie down for a while.

I started heading into work about noon, thinking that I'd last a couple hours. But I was feeling pretty good there and getting quite a bit done. So I stayed until about 6. I was still in "work mode", so I kept working on a copy of things on my USB drive. I wasn't all that tired, and didn't really have pain out of "the ordinary", so I put in some good time on work stuff. I went to bed a bit after 1am.

This morning I thought and hoped would be much like yesterday, but things soured early and stayed that way. A "new" pain for me was a pain in the side -- perhaps the liver is not projecting all that far away . It kinda felt like I'd been kicked in the ribs on my right side. This didn't get any better during the day, and in fact got worse -- even trying to chase it away with some vicodin. Although I'd gotten in earlier this morning, by 3 o'clock I'd had enough.

I came home, took some percocet, and went right to bed. And I've pretty much been here since. The percocets weren't working by themselves, so I had to add an oxycontin. That is finally taking the sharpness out of the pain. I've still got a duller pain in that area, but it doesn't keep be so completely doubled over like it had done earlier today.

Maybe I just bit off more than my body could chew yesterday and today. Well, at least I've made some good progress with some of the things for work. But tomorrow I'll be playing it by ear a bit more -- and I'll probably be more willing to throw in the towel at an earlier stage.

First Day of School!

The Tuesday after Labor Day was most certainly one out of the ordinary. Brooke started high school, and Heather had her first day of kindergarten! (I even managed to go to work for the first "normal" day in a while!)

Heather was very excited, and Angie was a bit overwhelmed as well. I managed to get a few pictures of Heather on this big morning.



Angie called me later and told me how she didn't want to leave Heather at the school, and how she cried for a bit. Our girls are just growing up too fast, I guess. It doesn't seem like it in the day-to-day, but when a big day like this comes along, I suppose all the emotion comes out.

Rough Night

Last night ended up being a nice little reminder of the way I'd felt after #3. I think it started with an upset stomach (at least that's how it felt to me). The mac & cheese that Brooke made was the last thing that seemed to sit well with me. After that, I was all screwed up.

The Diet Dew, Gatorade, or even cold water just seemed to sit on top and aggrevate my stomach, which really did turn into a pretty good belly ache on its own. When I'd try to take my meds "on schedule", they didn't seem to do their normal thing through my messed up stomach. So as the night wore on, I got the shoulder pain returning more intensely. And it spread to other parts of my back as well. And for some reason, the backs of my upper arms were sore too. I think I might be rubbing more muscles than I'm thinking about and maybe that was in turn getting a little sore.

Anyways, sleep escaped me for most of the night. My night was familiar, like the ones in early August, in which I was rather tired -- drained -- but had enough pains in the shoulder or belly to keep me uncomfortable. And being uncomfortable kept me moving around in search or some kind of a comfortable position. I think I may have nodded off for a half hour or so on the couch during one stop. After I woke up from that, about 6:30 am, I took some more meds and went back to bed.

Heather was up about 7:30 and wanted to watch TV, but I asked her to go back to bed for a little bit. I woke up about 9 to find her quietly building a fort for her stuffed animals at the foot of the bed. I turned on the TV for her and wandered about in search of some pain relief. It didn't really go so well. I tried to watch some pre-game and some football, but that wasn't going so well either.

Brooke had made a frozen pizza about 1ish; I came downstairs a bit later and reheated some. I was very hesitant, but so far following Brooke's lead had worked for me, so I gave a couple slices a try. It was rough getting them down, because the belly ache was still with me. And maybe a half hour or so later it was time for some meds again. Now this time apparently my ducks were in a row. It was tough on my stomach at first, but it finally sat well and the meds began to work more as I hope and expect them to.

So by about 4 I was finally getting rid of the belly ache and the shoulder and back pains. Finally some relief! And then I was extremely drained of all energy, but I hadn't really been able to fall asleep. And so for the moment I'm feeling fairly pain-free and tired, drained. But it's definitely an improvement. Unfortunately, I'll probably need to eat something soon. I hope I don't repeat this little cycle of the past day.

Good To Be Home

If definitely feels far more comfortable to be at home. And now I'm adjusting to what it's like being out of the hospital. No real surprises, much the same as it's been before.

The pain is returning. This time it seems to mostly be projected into my right shoulder. If you've ever been to a chiropractor and he's dug his elbow down into the muscle on your shoulder, that's a pretty good approximation. Except that it goes on for a period of a half hour or maybe two hours, depending on when and to what extent the meds smooth things out.

So far, the old regiment seems to work about like it did before. But that still means that hour or whatever in which I just have the pain and kind of writhe and shake and try to find distractions such as Facebook games to keep me distracted. Or just wandering about. In its own way, I guess I get used to it, but it's not a lot of fun. Maybe a bath will help out too. To me it seems that even though the pain is projected from the liver, treating the symptom of rubbing my shoulder or whatever seems to make it go away. So that helps.

I haven't been able to sleep all that much. Maybe an hour and a half early last night, another hour and a half on the couch for a while. This morning I think I caught another half hour or so. And there have been a couple of times when I've just been able to roll over a bit and relax enough "watching" TV in the bedroom that I've been half asleep.

Food is staying down better today. Brooke made some mac & cheese that hit the spot. But I'm still covering the lion's share with yogurt, Little Debbie's Snack Cakes. Maybe some pudding later.

It seems like a lot of waiting that I do, though. Waiting for the meds to kick in. I seem to do a lot of waiting.

Back Home from C-E IV

I had what should hopefully be the last C-E of the series on Thursday, if all went well. No, I don't know the results yet.

We've been doing right-left-scan, and intended to do right-left-scan again, but the previous scan showed that the chemo used for the right lobe reduced the tumor size and the chemo used for the left didn't. So we instead hit the left twice in a row when the working chemo was again available. I hope it worked, but the experience was not pleasant. I had meant to do more updates here on the blog last time, but didn't. This is my attempt at trying to do better this time.

The hospital experience was much the same. I don't care for the bed -- I find it very uncomfortable; I find it hard to sleep for more than an hour. I hate being tethered by IV to the meds tree of saline, some o' this or that, and the pain meds (well, those I have a little bit more of an okay time with). I had nausea again as my experience with hospital food continues to go downhill since the first time; then I hadn't found it to be too bad.

I am back home now, and prefer it by far. I've got different meds, of course (can't have a morphine drip at home, ya know). But after #3 I think I've got a cocktail figured out that seems to work for me. And the bed is much more comfortable. And the blankets don't feel like I'm sleeping on a pile of used towels. And I can get a Gatorade, cold milk, or my Diet Dew much more easily. And stuff like my Little Debbie's snacks seem to have more staying power than the hospital toast.

Heck, I can even sneak outside for a smoke. Yeah, I oughtta take that 2-day break as an opportunity to quit for good, but it somehow does take an edge off the pain for 5-10 minutes as I'm waiting for the meds to kick in. At those moments those few minutes mean a lot to me.

But of course the best is being close enough to at least hear the girls and pretend things are relatively normal. I even felt good enough an hour or so ago to give Heather her bath. And I can keep myself a little more back into routine putzing around on the computer: reading, chatting, seeing what folks on Facebook are doing. I can flip the TV on in the background (to more channels that might interest me) and keep myself distracted better. And when I'm tired and the pain is under control, it's easy to just roll over and shut my eyes and be able to relax fairly well if not fall asleep.

I hope things continue like this if not improve. As long as my situation doesn't begin to deteriorate before getting better like #3. So that's about what I know so far. I'll try to update here more often than I did last time.

C-E III

I'm tired of saying and writing "chemoembolization". I had my latest C-E on July 21st. It didn't seem to go as well for me this time. Maybe it accomplished what it needed to, but I've been feeling very crappy ever since.

[Continuing from this brief bit started from 8/12.]

It seemed to start off well, I remember joking with Dr. Close while getting prepped. The procedure seemed to go like the two previous ones.

Back in the hospital room after it was over, though, I noticed that my butt felt wet. I uncovered myself to find that the tegaderm over the incision had come off and that I had been bleeding a little. Perhaps that was a sign that things would be different this time. I called the nurse and they got me fixed up pretty quickly. But over the next few weeks I still had a black-and-blue mark in the area of the incision. Perhaps I was writhing around too much this time and hadn't been aware of it.

Again, I thought things would be like the times before, and so I tried eating like I had previously. But then I wasn't as up for the more solid foods as before, so I switched to more of jello and pudding meals. Even that didn't sit well, and this time around I had a couple of battles with nausea that did bring me to vomit twice. (Sorry for being graphic.)

I stayed longer into the second day than I had previously, but left the following day as I had before. My reasoning then and now is that it's better to be feeling like crap in the more comfortable surroundings at home than in the hospital. When you cut to the chase, besides the drugs administered there, there was little to be gained by staying.

I think I had planned to work on the Thursday and Friday as I believe I had done before. But this time around I even found it difficult in my attempts to work from home on those days. And I believe this same issue with pain spilled over into the next week. On Thursday the 30th, I mentioned this to Dr. Tom and he bumped me up to percocet. I remember calling the following Tuesday and mentioning that to me it had no effect; I believe I called it "junk". So apparently the pain had been much more than I had anticipated, and looking back it was more than I thought even at the time. On that Tuesday that I called, they prescribed my oxycontin to take "under" the percocet/vicodin (one or the other) and the ibuprofin. That may have taken it down a notch to tolerable, but I don't know how much I had noticed back then -- I believe it did lower my pain.

My sister Karen and nephew James had planned back in July and earlier to come visit in early August. How I will be feeling is never really something I can forecast, so it was all wait and see. Unfortunately, during the time they were here I had never really gotten back to even a nice 50% level.

I had picked them up at the airport on Saturday the 1st. On Sunday they went to Bismarck to help Mom with the plethora of issues involving Dad and his turn for the worse with his Alzheimer's. Dad had turned mean during a hospital stay, and has since been in the hospital, restrained at times early on, or in nursing care. So it has really not been a "vacation" type summer for us Sinkulas, time away from work or not.

I felt bad that I couldn't do much when Karen and James were here. It would have been nice to go to the Minnesota Zoo or some other things in town while they were here, but I couldn't really get too far away from my bed upstairs for any length of time. We did get to talk about things on a deeper level than we have before, and it was very nice to just see them again. But I really wish I'd had more life in me at the time.

On Saturday, August 8th, I believe, we did get together at my house with my cousin James and his family. It's odd that they live in the metro area but I hadn't visited in many, many years. This too was a good, albeit brief, time to visit with family for me. And again I'd wished I'd had more spunk.



Karen and James returned home on the 11th, and all that morning I tried to see if I felt like I could drive them to the airport and make it back myself. By the time it came to go, I didn't think that I could do it. Although the pain had receded by this point in time, tiredness and a queasy stomach were making a play. Perhaps they had been there before but I hadn't noticed them over the pain.

At some point during that week, I was doing partial days of working from home, and I think I made it in to the office for half of the day on that Friday (the 14th?). The following week I was still not putting in a full day in the office. It was about this time -- 10 days out -- that I was questioning my readiness for the next scheduled C-E, which was set for the 25th. After making calls to Dr. Amatruda and Dr. Close and "their people", we did decide to bump it. Likely due to the pain I was reporting, Dr. Amatruda wanted me to have a bone scan to verify that things had not spread there yet. This was scheduled for the 25th.

Hey, a new scan for me. It didn't have the no-eat, no-drink rules, so I was happy about that. I had to go in a little before 8 to get an injection of something lightly radioactive and then return for the scan at 10:30. Originally I was planning to go to the office and set up my computer which takes forever to boot up. But being a little tired and Suburban Imaging being about halfway, but closer to home, I decided to return home and just lie down and relax.

I relaxed too much, apparently, as I looked over at the clock which read 10:40 as I abruptly woke up. I quickly called to let them know I'd be on my way, and thankfully there were no appointments that followed mine. So I was able to get in and get the scan done. This one used a machine more like at CT than an MR: a thinner "donut". And I didn't need to hold by breath like I'd had to for the abdominal scans. But this one lasted a half hour. The only odd part was when my head was in the machine and one part of the "donut" was inches from my face. Other than that, it's an easy scan.

Folks other than myself tend to be anxious for the results. I decided to wait two days before calling about other things and to see if the results were in at that point. They were, and they indicated nothing new and bad. And apparently they had just called home and talked to Angie and given her this news.

So now were mostly to the present. I've been doing my best to work in the office all the last week, and the pain really given way to being excessively tired and a not quite settled stomach. Sorry I haven't updated in a while. I've been online a lot, but clicking buttons and looking at goofy pictures, or even skimming or reading, has been much easier to do than to try and sit and write this out. I know I must have forgotten plenty of things I was going to write when I'd had intentions of starting this weeks ago. But hopefully I hit the main points.

Al's Bonfire

I've been behind lately, and a little short on words. Hopefully pictures will be worth at least a couple.