Honestly, I’m sure I do have a lot of better things to do; Feck off! I get to define “better” and I just renewed this service so I’m going to get at least one post in before I forget it again and disappear. I have bills to pay and this isn’t helping.
Perhaps I’m of the wrong generation, but virtual worlds confuse me. But even back on a BBS (before the Internet and shortly after it started leaking out of institutions of higher education) I saw signs of virtual life. Thirteen year-olds would declare themselves engaged or married, or rather their in-game characters would. It was all part of the game on the computer; couples could share things that single characters couldn’t. But then you’d discover that some of the virtual couples were dating.
So here’s the question; are people using their avatars to live a life they wouldn’t think of living in real life, or one they very much want to live in real life? Are those two choices different? Maybe they aren’t. That flirt, or that bitch, in a chat room might deny being that way face to face and claim to never even think of displaying those behaviors toward another person. “Oh, that’s just a role played online.” But where did that come from? Is the avatar an object resulting from creativity or simply a loss of inhibition?
And what of the person that plays their avatar just as they would real life, simply as an extension of their self? To them, the virtual world is a different neighborhood to explore. New things to do and people to meet. And here is where the problems begin. Real-person-avatar meets unreal-person-avatar. Neither can know who they are interacting with. And maybe after all, this IS a model of real life, because we never do know whether the people we’re talking to are being honest. Even with themselves.
After another year, two maintenance cycles later, I was declared to be in remission. Lymphoma is one the the cancers that are currently considered incurable. That makes the number of “R” treatments 8 (initial 6, and extended 2, of the treatment cycles every three weeks) plus 16 (four maintenance cycles of weekly treatments for four weeks each) = 24. 24 infusions of Rituximab, not counting the other drugs in the first eight regular treatments, each costing about $6000. That’s $144,00. for just one drug! Add CT and PET scans, hospital stay, urologist office visits and procedures, oncologist office visits, labs and the other infusion drugs and procedures, and the original GP , surgeon and other consultations in the diagnosis. In a period of 2½ years I “spent” a fortune. I’m sure this earned the insurance premiums. But neither should be this high.
Anyway, that was the end of January, 2012. Since then, including a few other illnesses and conditions along the way, I’m now taking nine drugs (one in three doses) daily. By far most of these are an attempt to counter the side effects or conditions resulting from the chemo. They don’t entirely but I’d hate trying to do without.
I’m now nearing 4 years in remission. I get blood tests and oncologist visits every 6 months. My existence as a “cancer patient” has outlived the careers of some of my oncologists. I’m on my fourth not counting the director of the consulting practice partnership who was there for my initial hospital stay. I guess that’s a positive thing. Most of the support staff I’ve enjoyed seeing are still at the infusion center.
I only remembered that I have this blog because my host provider forced an update on the WordPress application and sent me an e-mail. So since then I had begun to consider whether I wanted to return to blogging or abandon it. Obviously I’ve written too much already for this to be a good-bye post (well, maybe not with my long-windedness). But is isn’t.
I’ve been thinking of a number of things to log about. Should I put them here? Should they be in their own assigned category? Should I put everything in one post or make multiple posts in one day if I’m thinking of different things? I really don’t know much of what I’m doing here and there aren’t clear answers because people blog the way they think. Some people blog just like someone else because they like to copy (sheeple come to mind). Independent souls have unique blogs. Finally, some blogs like mine evolve because their authors are just learning. So now I’ve convinced myself that it doesn’t matter. Thank you.
More later. I have no idea how soon or later.
OK, Gross as it may be, and maybe that’s the reason I forgot to mention, I did finally and on schedule have the stent removed. Read back at the time of the decision to have the first one replaced rather than just removed and you’ll anticipate what follows. It was removed with minimal local pain “killer” administered in the form of a gel. Up the “path way” and pinched off with something akin to a hose clamp so it didn’t just leak out. Visualize a “wrestlers bridge” and you’ll see the position I took as they went after the stent with the tool with the camera and bright light. ‘Nuf said. It was over none-too-soon with success. End of blog entry and hopefully not to be repeated! Sweet dreams.
How time flies when you’re having fun!
OK, not so much fun but again I’ve neglected this. It’s been almost a year. That means I’ve been off the initial regimen of chemo and gone through two maintenance cycles of 5 months off, one month of weekly infusions. Not too bad. This one doesn’t effect me too much outside of joint pain. Last CT scan (or have I been calling them CAT scans? Don’t want to confuse you) was an improvement even with just the maintenance treatment. In a little while, after another of those Barium Sulfate “shakes” (two 450ml bottles) -yuch- I go for another scan. I feel good about it but always a little apprehensive.
I hope I’ll remember to update this.
Better than falling ON my behind.
OK, first, the removal of the catheter was almost painless, except mental damage done by the anxiety and the bizarre list of thoughts that went through my mind between the time I decided I HAD to do this and when I was finished. The design of this thing is odd but simple; a tube within a tube. One is the obvious path for urine from your biological, internal bladder to what can similarly be considered a bladder, outside your body. This one you then empty when “convenient”. The other tube is to inflate (with fluid, not air) a bulb at the end that keeps the whole thing (hole thing?) from sliding out. To remove you simply cut the inflating end, the fluid drains and you pull it out. Sounds simple, but not much thought effort can get in the way of this task. I stood there over the toilet for half of an hour before I could cut the tube end off. Cutting off that end and letting the fluid drain and the bulb deflate was the point of no return; once done there would be nothing to reliably keep the catheter in. Not to mention the juggling act of holding “everything” including the scissors. And once I started the steady pulling pressure? I didn’t want to stop and needed to change my grip but I was almost bent over double; the thing seemed just that long (I mean the catheter!). Finally the end came out but if it was as long as it seemed, I should have felt the inflated bulb at the back of my throat!
I started the most recent, and perhaps last, cycle of my chemo Wednesday. I’m scheduled for a PET (more detailed than conventional CT) scan in a couple of weeks preceeding my “normal” 3 week office visit. That will provide the most current and accurate status of my Lymphoma. The projection is that if (or when) I reach a state of remission I’ll then only be needing these tests at 3 month intervals (at least to start).
As if the “normal” cycle of medication and side effects aren’t bad enough, and they are I assure you, the situation due to the safe useful life of a ureter stent has to compound problems. The stent needs to be removed and replaced with a new one after about 6 months. It can collect “salts” and other minerals in the urine (like those that form kidney stones) and cause complications like more blockage or difficult removal. So I just had pre-op and surgery appointments for that procedure last Thursday and Friday.
To begin with, the pre-op went well; a urine sample (expected, since it is a Urologist I’m seeing) and an x-ray (equally obvious to sort of re-map the territory). What followed in the office was a bit more difficult. I was given options! The x-ray showed the main Lymphoma mass impacting my kidney had shrunk further, by a significant amount. Not gone but sufficiently reducing pressure on the ureter that it would probably allow normal drainage of the kidney if the stent was simply removed (Opt. #2). The original “plan” was to simply replace the stent (Opt. #1) which could be described as “the safe choice” as it left protection in place (in case the ureter was still too week or the mass to invasive despite the appearance in the x-ray). The situation surrounding the kidney performance would simply move unchanged to the “back burner” for as much as another 6 months if needed, as we continued to concentrate on the Lymphoma. An option #3 involved removing the stent and a quick test using a dye with tilting me toward an upright position while still under anesthesia. This would provide some idea of the condition of the drainage, but I’d be in no condition to consult on whether to replace or leave out the stent; defeating the attempt to involve “the patient” more in treatment decisions. Did I mention that simple removal, whenever it would be done to the “final” stent, would not be done under general anesthesia? For some reason I still don’t care for that one, no matter how inevitable it must be. Option #2 of course included the potential of future replacement if it was discovered (by whatever test result or other unhealthy condition should befall me) that it was necessary.
I selected the original, option #1. A new stent is in place.
The result is that I’m now also temporarily catheterized because they found some scaring, perhaps from the original procedure. There’s been some blood in my urine and swelling so they put in the catheter to effectively do the same for my urethra as the stent is doing for my right kidney ureter, though much more on a temporary need basis (I hope). I’m supposed to remove that myself!
For the last few days we’ve been under a southern drop in the jet stream that brought clear skies but temperature lows in the teens. Dry that’s not too bad with the right clothing; and I’ve not been going out that much anyway. But last night there was another shift bringing “moist” air up from the south hitting the cold mass over us. Of course that means rain, and with the ground and everything else frigid from the cold air, that really means freezing rain and a coat of ice everywhere.
The shed over the water storage tank, the pump-house, is well built and insulated. The idea was to keep the pump and pressure tank safe, along with a place for a future water softener system. I put in a light that was also to keep it a little warm during cold nights to keep the pipes from freezing. One little detail though; a burned out bulb produces no light or heat. I’d forgotten to check it and some time last night we lost water (again).
With everything covered with a coat of ice, we couldn’t even get up the driveway to the car much less around behind the garage and up the hill to the pump-house. This morning, with last night’s low being only in the mid-20’s, I could get up to the pump-house the long way around (finding safe footing in daylight) and replace the light bulb. There were no burst pipes, just blocked. The pressure switch manual over-ride worked but couldn’t raise the pressure; but by 4 PM the heat from the bub had melted enough ice that I could reset everything, bring the pressure up and had water flowing again.
This one only cost the price of a light bulb that I should have rememberd to change in the first place. I got off easy this time.
OK, it wasn’t all that “recently” since I’ve been neglectful in posting; but I recently had another reminder that you’re never really through paying for things you own. It’s not that long ago that I traided in my 1994 Ford Taurus and bought a new car. Well, as they say, it’s new to me. Still wanting a mid-size car that has enough space to be comfortable, I found (via the dealership web site) a low milage 2004 Ford Taurus at a pretty good price. Taking a print-out of the web page listing helped keep the price “good”. (That’s another long story.) I’m fairly happy with the car. Other than gluing the driver-side mirror “pod?” back on after a bit of vandalism, no trouble from it in about 20k miles I’ve added to it.
It wasn’t a new battery, so I wasn’t shocked to have a problem pop up. The gas milage computer was forgetting some numbers and I had a problem starting once or twice. The battery didn’t seem to hold a charge very long. So I sprang for the cost of a new one. The shop even had an attractive warranty and return policy at no additional cost, and the price was pretty reasonable to begin with. I was pleased until the car didn’t start the next day. It was Saturday but they were open, so I went back receipt in hand. “No problem, we don’t have another one here but we can have one from another store right after we open Monday morning.” Actually, that’s prett good. “But let’s run a few tests.” One of a number of tests (voltage, load, etc.) that wasn’t done when I first went in to buy the battery, was to look at the current between the alternator and the battery with the engine running and things like the headlights and heater fan on. This was drawing FROM the battery! The alternator wasn’t keeping up. It should have been. The regulator wasn’t working right and this explained why the battery seemed to not hold a charge. It probably would do better if it wasn’t being drained; I usually drive with my lights on and it’s been cold lately so I’ve been running the heater. So I needed a new alternator. They could order one (it’s a model they don’t usually stock) and although their price was pretty high, their installation charge was a flat rate $50. Again, this wasn’t too bad compared to some shops. They even suggested I might save some by buying the replacement (as a refurbished/rebuilt) at a parts store; they’d still be willing to install it but at $100. flat rate.
I bought a replacement alternator at a parts store and a friend helped me install it (OK, im my condition, it was more like I helped him) on Sunday. I went back to the battery shop (yeh, that’s about all they do) and they ran all the tests again. Everything’s good. New battery and the alternator has a lifetime warranty too.