Treatments – Barrelhaven

Ouch

An important lesson was learned yesterday. Yesterday was my first session of my second round of TMS, which was fine. There was a lot of talk about “dosing” and “intensities” but what it comes down to is, they’re zapping the left side of my brain a little longer this time. I think. I once again reassure both myself and my audience that there is good science behind it. The truth is, though, even the people who do it still don’t know exactly what it does or why it works. But it does.

The difficulty began when I decided I should go out shopping immediately after I got back. The shopping took considerably longer than expected and I ended up being out of the house for 4-5 hours¹ which, it turns out, does not work for me. Or at least it didn’t yesterday. I’m not sure exactly what I did in between when we got home and when I went to bed, which was about 8pm, but I slept for almost 12 hours with no significant interruptions.

Okay, I can already hear people saying “WTF did you mean by ‘does not work’, sport?” so I’ll try to provide a little more detail. I have, in the past, described the situation as being like needing to go to the bathroom. You can be walking around and you’ll get that little kick from your bladder that says “start thinking about me”. This, as we all know, is not urgent and you can ignore it. If you ignore it for long enough, there comes a point when you don’t really have a lot of choice in the matter, you have to go. Many² people will not have allowed things to get to that point, which is good, but you can imagine. So there came a point yesterday when I had to go and I kind of couldn’t. So I pushed through. I didn’t do anything awful or inappropriate³ but I really can’t remember a lot of detail about the rest of the day and it became pretty obvious that I wasn’t thinking clearly at times.

I did get home safe and sound and, as mentioned above, after sleeping for nearly 12 hours I even feel better. I am still much more physically tired than I would have expected but most of my brain is back on line.

Small steps.

Which is not as long as I would have guessed. I’m basing this off when I left the house and semi-cloudy recollection of when we got back and if I had guessed I would have said it was 6-8 hours. ↩︎
I worked in an emergency room for a long time. I know not everyone has lost control of their bladder at some point but the number who have may be higher than you think. ↩︎
Except possibly being very disagreeable company for my wife. I’ll have to ask. ↩︎

How Am I Doing?

The short answer is, better. The long answer is, as it has been previously, it depends on how far back you look. Compared to two years ago, I am noticeably improved. Compared to ten years ago, I am still a complete wreck. There is no question that I have more energy and less brain fog than I did last year, but I still jump at sudden noises, I still have difficulty being out in public for any length of time, and I currently have a bruise on my forehead because I woke up from a dream all in a fluster, leapt out of bed because my pager had gone off, or someone called a code, or I can’t even remember what, and I went face-first into a wall. There is still work to be done.

Again, though, I do feel like I’m starting to come back to life a little bit. Nothing much has been showing up here, I’m afraid, because I’ve been spending a great deal of time playing No Man’s Sky, and working on an unnecessarily complicated and overly detailed setting for a Dungeons and Dragons game I hope to start running next week.

I’m going back to see the TMS¹ people next week to see if I might benefit from some supplemental brain-zapping, and I continue to take my meds and see my therapist. I have been assured there isn’t much more I could be doing to help myself along the road to recovery. The speed of recovery wouldn’t be as much of an issue if we currently had a functional federal government. I have been waiting for a final decision on social security disability benefits for some time now and I can’t really foresee much progress coming in the next 3-4 years. This is something of a disadvantage.

At this point, all I can do is try not to worry about it. I have to get better and find something economically viable to do with myself, sooner rather than later, but there really isn’t much else I can do to speed the process along. Things will work out or they won’t.

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Transcranial magnetic stimulation, for those who may not recall ↩︎

Since I Have a Moment

It is currently stormy AF outside and the power keeps blinking. I usually¹ sleep with two white noise machines going, and music playing in order to keep me from hearing things at night and waking up. The difficulty is, of course, that the white noise machines shutting off wakes me up, so I turn them back on and go back to sleep. Then the power blinks again. You get the idea.

Anyway, through the miracle of battery technology, I might as well take advantage of this unexpected up-time instead of just lying in bed and seething². So what has been going on in my head?

The most confusing bit for me is that I feel both better and worse than I did, say, six months ago. I feel better because my mood is generally more stable (for the last few weeks anyway) thanks to getting a combination of meds that seems so work, having a therapist who is good at his job, and transcranial magnetic stimulation treatments³. On the other hand, the world in general, and the United States in particular, have managed to engineer a set of circumstances that are similar enough to the winter of 2020⁴ that my PTSD is on Extra-Jumpy mode. I think I’m coping with the increased symptoms better than I would have if I didn’t have a few things working in my favor but it still isn’t much fun.

The coping methods include, picking up writing again⁵, and aggressively ignoring as much of the outside world as I can for the time being. I assume someone will let me know if any of the four or five things swirling around that could cause another pandemic actually does.

This is a habit left over from working night shift. I have needed to continue doing it because I tend to be jumpy enough that nearly anything will wake me up. ↩︎
I’m still seething but I’m not doing while lying in bed and I’m also doing something else, which makes the seething better somehow? I don’t know how these things work. ↩︎
More on this when it isn’t 0330 during a windstorm. ↩︎
I’m not going to go into a detailed list of the similarities between today and 2020 and today because it would likely cause my brain to spiral. It’s all the things you would think would be on the list and a few things that might be a bit more obscure. ↩︎
No “I told you so”s from the peanut gallery, please ↩︎

Somewhat More Verbose

Among the happenings over the last year was being denied social security disability benefits. In spite of opinions to the contrary provided by my actual care providers, SSDI felt there was no reason I couldn’t “adapt to other work”. The nature of the “other work” was not specified.

I had tried, over the preceding 16 months or so, to not count on getting disability benefits. I knew it was a long shot, at least the first time around, but I also didn’t have a long-term Plan B. This has not contributed anything to my peace of mind.

The Plan B I was pretending I had, and which I don’t think was really fooling anyone, involved me sucking it up and going back to work. What with my preexisting doubt there is anything really wrong with me in the first place (well documented in previous posts) and social security insisting I could adjust to other work, I tried hard to resign myself to the idea of returning to hospital nursing. Several incidents of greater or lesser significance over the last few months have persuaded me this isn’t realistic, in spite of any protestations I might make to the contrary.

As one might infer from the numbers in the previous post, I remain symptomatic. I still don’t know what to do with myself when panic-brain takes over, which happens much too frequently in spite of everything. Dr. Psychiatrist is still experimenting, trying to find some combination of meds to make me a bit more functional. which is a process I am trying to not get discouraged about as well.

Am I better than I was this time last year? Probably? But certainly not better enough.

Hey… didn’t I have cancer?

Remember how I was going to start a blog to keep everyone up to date on how my cancer treatment was going? What ever happened with that?

I started the second round of BCG yesterday. I had completely forgotten about it until about 5 pm Monday evening so it was a nice surprise. As always the procedure went smoothly. Pretty much as soon as I got home, though, I was right back to the frequency and urgency with urination. It was like the treatment never stopped. I’m feeling a little fatigued today but there are plenty of non-cancer treatment related reasons for that as well.

The plan was for three more doses but that is going to get really complicated. After my second dose, I am going to be changing insurance and my current urologist won’t take my new insurance. Just out of morbid curiosity I asked the billing people at the clinic how much getting a dose would cost and the answer was somewhere on the order of $10,000. For one dose.

Yeah. I’m just going to finish this post later. Or not.

Back to it

Today was my first visit with Dr. Urologist in several weeks. The visit included another scope to check out how everything is looking and it turns out that everything is looking pretty good. There is no new weirdness and the old weirdness seems to be healing up quite satisfactorily. I was due for another dose of BCG but the treatment nurse is on vacation. Dr. Urologist said that he was perfectly okay with me waiting until she gets back to start treatment again so I’m off the hook until the middle(-ish) of January. This is news that is about as good as I was likely to get today.

Right now the plan is still 3-4 weekly BCG treatments, followed by another scope once the inflammation from that has gone down (a few months after the last dose) and then if that continues to look good, monthly maintenance doses for 6 months. If things continue to look good after that I should be done with active treatment and just be up for scopes once or twice a year to make sure nothing else weird happens.

As everyone is aware, nothing weird has happened for the last three years so I’m sure that everything will continue to be normal and boring going forward with no surprises or unexpected complications at all.

Oh right. That.

I suppose people might be curious about the outcome of my visit to the urologist today.

The news is not bad. Dr. Urologist was happy with how everything looked right now and wants to wait another three months for the inflammation from round 1 to really get gone before starting round 2. There are still some cytology results that we’re waiting for but Dr. Urologist is not really expecting anything to show up.

This is pretty good news under the circumstances. The fact that he is willing to wait three months before more treatment is reassuring. The only down-side is that I will probably have to go back to my real job for at least a while until round 2 starts.

Nothing is perfect.

Two days until round 2

Time for some brief updates on everything.

I had previously decided that I was going to take a short break from school during the month of October and that has gone through, been approved and is all taken care of. I’ll be back to working on my degree in November. I’m not terribly excited about the delay, but I think it will allow me to get enough other fires put out that when I do go back I will have a much easier time focusing on schoolwork, so I think this will be a good thing.

The basement is frustratingly close to being done. We have been wrestling with the people who are going to replace the bits of the floor that are missing since the second week of August with almost nothing to show for it. Supposedly they’ll have all the flooring tiles, adhesive, baseboards, etc. this week and the installers are tentatively scheduled for Thursday. If everything goes well. Maybe. It’s not certain.

I’m trying to remain optimistic that the floor will be done by the second week of October and then The Great Unpacking will commence. The Great Unpacking should only take a few days, a week at most, and then the basement will be done.

Side effects; the fatigue is way better. I’m still not 100%, maybe more like 75-80%. Just in time to get scoped in two days and start round two of treatment. Round two will not necessarily kick off right away, but this is what is going to set the schedule. I am hoping that with only three treatments instead of six, maybe I’ll only be half as fatigued afterwards. Time will tell.

Work; I will confess to being somewhat anxious about work, likely for no good reason at all. As previously mentioned, My doctor wrote me a note authorizing essentially indefinite light duty and I plan to take advantage of that. I don’t think there is anything that my employer can legally do to pressure me to return to my usual job but I also have to wonder what kind of reception I’m going to get after slacking off for 2-3 months. Time will tell.

Events may be aligning such that I will only have to deal with work and treatment during the month of October which will almost be like a vacation compared to the last six months. Of course the last time I said something like that we ended up having a global pandemic, the country elected one of the top three worst presidents in the history of the United States, the basement flooded (again) and I changed jobs three times.

I’m keeping my mouth shut this time.

In the spirit of transparency

Too much information alert!

Proceed at your own risk

This is another one of those things that I would ordinarily keep to myself, both because I didn’t want people around me to worry, and because I genuinely don’t know how much it should be worried about at all.

Since Friday I have been having symptoms very much like a urinary tract infection. This was kind of curious. While I have more reason than some to have a uti, it’s pretty much been life as usual for me for the last month or so and I would think that any infection issues related to the BCG treatments would have popped up before now.

So I went in to urgent care (my primary care doctor was scheduled out for the next month or so), dropped off a urine specimen, picked up a prescription for nitrofurantoin and went on my way. A couple of days later I got a call reporting that my urine culture was negative. Which would almost certainly mean I didn’t have a uti.

And yet I continued (and continue) to have symptoms very much like a urinary tract infection, only thing missing is fevers. So what is causing the symptoms?

The answer is, of course, “I don’t know, but probably not anything I’m going to be happy to find out about”. I already have an appointment with the urologist in three days and I don’t think three days is going to make any difference with anything one way or the other.

We shall see.

More recovery

I continue to feel a little better. I’m on light duty at least through September 10, longer if I still don’t have my energy back. The complication is that on September 30 I go see the urologist for more testing and will likely start another short course of BCG. What this means is that I will likely be ready to come off light duty about the time that I will need to go back on light duty for round two. Awkward.

I felt enough better today that I made an attempt at chipping away on schoolwork. I won’t say that I accomplished much but it’s more than I’ve been able to do for the last few weeks so I’m still counting it as a win.

The basement also continues to make progress. The walls are done and (almost) all painted, as I may have mentioned previously, and the floor may be done as early as Friday which would mean that the only major project left is unpacking. Having the basement finished is going to be a huge weight off my mind and (hopefully) it won’t flood again in December.

Things could be worse.