The State of the Jim, April 29, 2018

Well, here’s what’s going on with me over the last bit.

So as the last post indicated, I got good news from my oncologist regarding the shrinkage of various cancerous masses inside me. The main mass is smaller, the liver mass is just slightly more than half its previous size, the possible spot in the lower left lung is gone, some of the involved lymph nodes are smaller and one is even “dead” and calcified.

He also suggested that I may need the colostomy for the long-term, which got a vehement NO from me.

But… there are some other things that have to heal up, namely the seroma, the abscess I’ve named The Hellmouth after the surgeon opened it up for draining and packing, and another abscess/fluid pocket that’s directly behind my descending colon at the stoma. More about that last one in a minute. And these things need to heal without the chemo inhibiting my body’s healing process, so we’re taking a little pause in the treatments to, well, treat the other stuff and let my body recover a bit.

And thus my last chemo was nearly a month ago. That said, I’ve still had spells of zero energy and the feeling that I’m just existing, rather than living. The week leading up to the oncologist was one of those – I used up all my spoons just getting to the surgeon on the Thursday (and that’s when they opened up the abscess) and getting to the oncologist on Friday, and that left me just wiped and miserable.

This week has been better on that front. I got a few billable hours in sorting out the design problem I’m facing and coming up with a primary and a secondary plan of action, and now I need to put the first one into play, which I will try to make happen this coming week before I get to the surgeon again on Thursday.

I was also able to get out and about a little bit this week, with “payday Thai” on Friday, followed by some therapeutic driving around in the nice weather and a social call or two. Hoping to do a little more of that going forward, too. My thinking is it helps me rebuild strength and stamina.

We’re having a quiet weekend – Kim needs it to recharge, and to be honest, so do I.

Sleep

My sleep patterns remain a total cluster. I’ll have nights when I’m just out all night barring one or two bio breaks, and other nights where I just can’t get to sleep (last night was one) for some time even though I was falling asleep in my chair before I headed for the bed. And there are still other nights when I get to sleep okay, but after one of the bio breaks, I’m wide awake for some time.

Various Pockets of (not-so-) Precious Bodily Fluids

The seroma is still draining, I’m still packing it twice a day, and every so often, part of a “dissolving” suture from the surgery waaay back in December will emerge with the old packing. Last week, one came out including its surgeon’s knot.

The abscess developed, probably, as a result of the post-op infection I had at the top of the slice, in my navel, and got to a point where the surgeon needed to open it up and drain it. The resulting hole has two tiers that need to be packed, and looks like a hellmouth, so I called it as such.

The remaining one – the one behind my stoma – was found on my CT scan from the 9th. And because of its location, I get to have a drain installed via intervention radiology at St. Luke’s on the 8th. They can’t even ultrasound it, it has to be done with CT assistance. So I’ll have a little bulb or bag collecting that fluid hanging off of me for a while. Yee. Hah. But it needs to be done. And they want me there at noon instead of 6am, so there’s that bonus.

Had to have a little chat with the surgeon this week. Seems my follow-up visits were being coded as such instead of “post-op”, and thus I was getting dinged another $65 copay each time. I have a problem with this. It’s being corrected, I’m told, and I should get a refund from this past Thursday and the one next Thursday (and ongoing for the same issue) won’t have a copay. I was also somewhat put out that he’d told me to use gauze packing strips – which you can’t buy at the corner pharmacy – and sent me home with what turned out to be a day-and-a-half’s worth on a Thursday (the seroma was taking about 3 feet of the stuff at one go, the hellmouth rather less). There are no nearby local medical supply stores where I live, and any elsewhere local aren’t open on weekends, so I had to mail-order it. So of course at this visit, after I’d taken delivery of $60 of gauze packing strips, he told me to (again) use an opened-up 4×4 gauze pad in the seroma…

At least he confirmed what he told me before: that the only reason he didn’t remove the main mass the first time and reconnect my bowel was because the mass was too large and had frangible bits extending into other systems that he couldn’t get out cleanly without sending cancer cells loose into my abdominal cavity, and that there is plenty of margin on both sides to do the resection properly (and thus eliminate the colostomy) once the mass is shrunk. So there’s that bit of good news. Obviously, gonna take more chemo to finish off the job so he can do that, but there’s some light at the end of that particular tunnel.

The Ever-Popular Poop Update

Well, since I was on a course of antibiotics, there wasn’t a whole lot of poop these past couple weeks. But I’ve largely confirmed that 4 days is about the limit for a bag seal to my body, regardless of the stress or lack thereof that the bag and seal endure. For example, I was emptying it last night and the act of doing a flush-and-squish with some water managed to pop a little hole in the seal, so I had to change a freshly-cleaned bag. Whee.

Other Stuff

Besides the above, I’ve indeed noticed hair loss. I’ve always had very thick hair, but not now. It’s so very thin up top and I can see my scalp. Got a cut last week back to the short “chemo special” cut I got in January, and this past week, it’s noticeably longer than it was just after the cut, so maybe it’ll grow back thick again after I’m done with all the chemo stuff.

The colostomy supplies company lost the plot on my April order. I got the boxes of bags, but the other stuff was on back order. On the 20th, a box arrived with a case of 12 tubes of sealant paste and paperwork indicating that it was 1 of the 3 tubes I’d ordered, with the other 2 tubes on back order. I called them, but not before I’d gotten a shipping notice of something else coming. Turns out it was the 2 tubes of paste on back order. Which confused the rep I was talking to, who kept insisting I had received 2 tubes. No, officially, 1 tube, with 2 on the way. And getting her straightened out took a while. Eventually, I got a return authorization for the excess. And then on Monday I received those 2 tubes, but had not gotten the return shipping label yet. But I got a shipping notice that more stuff was on the way. I was expecting it to be the last back ordered item, the skin protector, but as it turned out, on Tuesday I received 2 separate boxes, each containing 2 tubes of paste.

What. The. Actual. Fuck. I’d now received 18 tubes of paste against an order of 3 tubes. Yet another phone call to them, and a request to speak to someone who could tell me why their Ft. Worth warehouse was apparently staffed with illiterate and innumerate people. And I wondered why they did things in the most inefficient and expensive way possible. And I discovered also that the other shipping notice was coming from Illinois and was the skin protector. And it would arrive on Thursday. I eventually received a return shipping label on Tuesday as well. But this was pretty ridiculous.

Related: has anyone reading this heard of a shipping/parcel company called “LSO”? I hadn’t until the colostomy supply house started sending me stuff via them. Their website is a joke, their tracking doesn’t update after 5pm or on weekends, and they deliver via a white Chevy pedovan with some decals slapped on it. I’m half convinced the medical supply house is their only client. I’ve made my 2nd attempt to have my preferred shipper changed to a company I’ve actually heard of, and we’ll have to see if it sticks this time.

Payday Thai this week was great – my old boss Kinton made a “surprise” (to everyone but me) appearance, and it was great to see him. It was also great to be seen, honestly. I spend a lot of time here in the house by myself and while that’s fairly “normal”, it’s nice to get out and be around friends.

Upcoming: need to corral some help to get some old race tires to the tire store for dismounting and disposal, which will free up some room for the tools and other personal stuff from my trailer (which I’ll also need help moving) and then get the trailer and the Neon within down to MSRH and to their new home(s), which will free up nearly $220 each month that I’m paying to store it.

And I’ll work on getting some paying work in. And another post-op with the surgeon. And the upcoming procedure for the drain. And trying to reclaim more of my life before the next rounds of chemo begin and take me out of it again.

I’m hoping that having all these extra holes (save the colostomy) healed up and closed up before starting again will help somewhat, as my body won’t be trying to heal those problems at the same time it’s dealing with the chemo.

But the chemo is working. That’s a big thing. And it’s been the one thing that’s kept me going a couple of times.

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Just a quick update

Good: the oncologist showed how all the cancerous masses are shrinking as a result of the chemo.

Bad: really low energy today. Dealing with an abcess and a seroma and a colostomy and taking antibiotics and… well, this is about all I can do.

I’m sleeping well enough, but just worn out. So that’s what’s going on.

Wow, it’s been a while.

So I had chemo #6 on April 2nd, which pretty much knocked me flat for the rest of the week with fatigue. Hence, no posting. Some of those days, the major accomplishment was “achieved an upright position” or “ate a food”, and that took pretty much all I had. And that was even with the 2 units of blood I also received on April 5th to (probably vainly) attempt to boost my saggy hemoglobin counts. My body has plenty of iron stored, but is choosing not to use it right now.

Monday the 9th saw me getting the “how is the chemo working” follow-on CT scan. This involved a barium sulfate contrast, which this day took the form of a “vanilla creme smoothie” instead of the lemonade-type I’d had the first time. Which was topped off just before the actual scan with some of the lemonade-type.

Amusement: they kept bringing me ice-cold bottles/cups of the contrast. I can’t even hold them without pain, let alone drink them, so they had to get ambient-temp bottles/cups instead.

I don’t have the results of the CT scan yet. That my oncologist, who I see this Friday the 20th, hasn’t called is an indication that nothing weird was found, so that’s good.

After we got home from the CT scan, the smoothie started producing gas. This is Not A Good Thing with a colostomy. I ended up blowing a bag seal, which wouldn’t have been a big deal except that when I was in the bathroom changing it, more gas and poop was being discharged (somewhat explosively) just as I’d get cleaned up from the last discharge. It was… extremely unpleasant, and I wound up having to clean far more of the bathroom than I’d originally intended.

And now I know why they tell you carbonated beverages are a Bad Thing if you have a colostomy. Ditto cabbage and other gas-generating foods. I also know to request the lemonade-type contrast for future CT scans as it didn’t cause gas.

Dad went home on Thursday. He and my stepmother’s 40th anniversary was yesterday (Sunday), and he wanted to be home for that. He’ll come down again if we need him, of course, but for now, we’re going to manage ourselves, and start tapping into the long list of local Team Crider folks who have been chomping at the bit to help us out.

Things improved during the week, as far as how I’m feeling. Talked with my client, got some fresh info on the project I’m doing and a good update on the other goings on there, and I will be getting some billable hours in this week on that, which will be good. And on Friday, after our regular alternate-Friday Thai lunch (there’s a group of current and former colleagues from Former Corporate Employer who get together on FCE’s paydays for Thai food), I did some therapeutic driving around, and when Kim got home from school, we went to our local Japanese restaurant for dinner. I went for sashimi instead of my usual nigiri sushi to minimize rice intake, and had a roll (yes, rice involved). It was a bit of an experiment, and I’m happy to report that there were no ill effects and it was indeed tasty *and* nutritious. And chef/owner Joon and his brother (also a sushi chef) were happy to see us again after a too-long absence.

Saturday saw us celebrating Kim’s son Ben’s birthday at his favorite place to do so, the Red Lion Pub. I had to play a bit fast-and-loose with the menu because my usual favorites there are currently problematic for me to eat, plus I can’t have carbonation (nor, for that matter, is alcohol suggested), so my usual cider is Right Out as well. I was, fortunately, able to find something fairly tasty to eat, drank plain ol’ tap water, and the Spotify playlist was heavily loaded with early Bowie, with some Gary Numan thrown in for good measure.

Sunday saw us at home. Because neither one of us wants to overextend – both of us have heavy recovery times if we do so. In an unusual situation for me, I’m also doing tax math way closer to deadline than I prefer, but to be fair, I’ve been kinda preoccupied. It’s only *slightly* complex, but within the boundaries of self-employment, quarterly payments, IRA distributions and penalties, unemployment, and small-business expenses, it’s straightforward. Shouldn’t have any problem finishing it off on time.

And that brings us to today. You’ll note I didn’t mention chemo – that’s because I get a 2nd “off week” pending the visit with the oncologist on Friday. And if things go according to plan (well, my hoped-for plan), I’ll get another week or two off to get some paying work in and, more to the point, let the rest of me recover a bit – like maybe get this seroma healed up – before restarting the systematic poisoning of parts of me to kill this shit. But we won’t know until Friday. I have a placeholder appointment with the infusion clinic on next Monday, just in case.

I’ll be honest: I need the time off from this. Mental health from being able to think normally and do things without getting totally wiped out in 5 minutes, physical stamina needs to get built back up, financial health from getting some billable hours in so I can pay for all this stuff (I had my quarterly call with my IRA guy a couple weeks ago and we agreed to put a quantity into a cash hold that can be easily – if expensively – accessed should I need it, but I’d really like to keep that as a last resort) and *also* help my mental state by putting myself back into the game.

So I’m hoping the doc agrees that my progress warrants the break.

And that’s the news for now. More as I think of other things to say.