FuckCancer – Barrelhaven

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.

Well at least I found out

It turns out that I may not be as ready to go back to regular work as I thought I was. Tuesday night was fine, I felt a bit more tired than usual but it was also my first full night shift in several weeks. Wednesday I felt like I’d been put through a wringer and I most certainly didn’t feel like I could go back and do it again. My new proposal is going to be working on the unit, say, Tuesday and Thursday, and in employee health on Wednesday and Friday. I think that might work. Once again, though, the only real way to find out is to try it and see what happens.

To be perfectly honest, part of the reason I felt so drained on Wednesday was that I spent a couple hours of it fighting with Verizon about phones. Our phones are old enough that ~~Apple has started throttling their data speed and battery function~~ their performance has really started to suffer, so we decided it was time to get new ones. Verizon, as I’m sure most carriers do, has a deal to turn in your old phone and get an upgrade (with an extra two year contract to stay with Verizon of course) so we did. Ordered two phones, one for Shannon’s number and one for mine. This was maybe the first week of October. For a couple weeks everything looked fine, then I got an email from Verizon saying that one of the phone orders was cancelled because it had been “confirmed as fraudulent”. This was news to me. I don’t recall anyone actually asking me if the order was fraudulent and the other order had gone through without a hitch.

I called Verizon’s customer service line and, after slightly more than the usual frustration navigating through their automated system, and after spending 75 minutes on the phone with three different people, the “fraudulent” order was cancelled and a new order put in. Good. This was late Wednesday morning.

That afternoon I got another email from Verizon saying that a recent order had been flagged as fraudulent and that I needed to contact the fraud prevention department.

So after considerably more than the usual frustration navigating through their automated system, and after spending 45 minutes on the phone with two different people, the “fraudulent” order was cancelled and a new order was put in.

I did give serious consideration to cancelling everything and switching carriers but after making some inquiries it seems like all the carriers are approximately equally awful.

First world problems…

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.

Okay, fine…

If you run into an asshole in the morning, you ran into an asshole. If you run into assholes all day, you’re the asshole.
Raylan Givens; Justified

Not saying I’m the asshole (not meaning to imply that I’m not the asshole either) but when different people are all independently telling you the same thing, you may want to pay attention to what they’re saying.

As mentioned in the previous post, nearly every person of significance in my life that I talked to about the question of whether or not to come off light duty said the same thing with surprisingly little variation. The common theme seemed to be a general concern that I was going to scramble my brain if I didn’t ease up on things a little.

I will certainly admit to having felt overwhelmed and overcommitted for most of the last three years or so, but I always assumed that was because my life was a disorganized mess and I couldn’t get my shit together. It is possible that I have been feeling overwhelmed and overcommitted because I actually have been overwhelmed and overcommitted. And then I got cancer.

The point to all this is that my primary care doctor gave me a note that appears to authorize light duty for me indefinitely and I may take advantage of that to stay on light duty until I actually feel better. As one particularly insightful person pointed out to me, I have obligations to my family that should carry at least as much weight as my obligation to work. It has been altogether too easy for me to forget that and I needed the reminder.

I’m still not sure what needs to happen before I feel like I’m ready to go back to work but I’m going to make an effort to find out rather than just going back whenever.

To return, or not to return…

As previously mentioned, I went and saw my primary care doctor on Friday. He didn’t really have any concrete ideas about the fatigue. He ordered a few basic blood tests to see if I’m anemic (I’m not), or hypothyroid (I’m not), or have any kind of unusual muscle damage (I don’t). In spite of that, he was somewhat equivocal on whether or not I should go back to work in the unit. He felt that I probably could go back to work but it would also be understandable if I stayed on light duty for a while longer, without a great deal of specificity on what “a while longer” might mean.

Being that I appear to be almost completely incapable of making this decision, and have been required to do so more times than I care to think about for school, I decided to make thing as complicated as possible and create an evidence table for whether or not I should go back to work. I’m leaving out any judgement on the quality of the evidence because I don’t think anyone I interact with on even a semi-regular basis has much to show in the way of an impact factor.

SOURCE	SUMMARY OF EVIDENCE	CONCLUSION
Friends and family	Stay the f*** home, doofus	Stay on light duty
Critical care management	We’d like to have you back but take whatever time you need	Indeterminate, leans return to work
Employee health management	We want you to get better of course, but we really need the help	Indeterminate, leans stay on light duty
Mental health provider	You’ve been through a great deal recently and there is nothing wrong with staying on light duty if you feel like you need to	Stay on light duty
Urologist	Nothing we did should be making you fatigued at this point	Return to work
Primary care provider	You could go back to work, but you really are being treated for a legitimate medical issue so you can certainly stay on light duty if you need to	Indeterminate
My brain	There isn’t anything wrong with you, stop malingering, STFU & GBTW	Return to work

With it laid out like that, the conclusion is pretty clear; I should listen to my brain because it appears to have the loudest and most annoying voice.

Okay, not really. But I reserve the right to feel like a slacker for staying home.

So how am I doing?

Recalling that the original purpose of this blog was to be a platform for updates on my cancer treatment and not really a platform for me to bitch about Covid, and realizing that I hadn’t actually made mention of my condition for a while, I have decided to try and rein this thing in a bit by combining a rant about Covid with a brief update on how I’ve been feeling.

I am still on light duty at work. The fatigue has definitely improved but only to the point that it is limiting instead of debilitating. I asked the urology clinic nurse about this, given that it has now been a bit over a month since my last treatment and I still haven’t bounced all the way back. The urology clinic really had nothing to offer other than to say that it would be unusual for the fatigue caused by BCG treatments to last this long. I have an appointment with my primary care doctor to rule out any other possible cause and after that, who knows? There is also a good chance that part of why my activity tolerance has gone to shit is that I am completely deconditioned from sitting on my ass for the last month plus.

Whatever is causing it, I still don’t feel like I would have the endurance to make it through a 12 hour shift in the ICU, especially under current conditions. Which brings me to my rant about Covid;

The two incidents I posted about below (and there are plenty more stories like those circulating around) made me realize that I simultaneously feel profoundly grateful that I am not working on the unit right now and incredibly guilty because I am not working on the unit right now. Every hospital in the country is desperately short of ICU staff and I am, in my own small way, totally not making that situation even a little bit better. Especially if there isn’t an identifiable physical cause for my continued lack of energy, I am going to have a really hard time justifying sitting things out for much longer.

I’m scheduled on my light duty assignment through next week, which will give me time to see my primary care and make sure there isn’t anything weird or unlikely going on physically and then I have a somewhat difficult decision. I would really prefer to not dive right back in, but things out in the world are not likely to improve much any time soon and I am not going to be able to stay on light duty forever, so a return to the ICU is inevitable. With that being the case, is there any point to putting it off?

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.