Cancer Blog – Page 2

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.

Recovery

It has been almost two weeks since my last dose of BCG. The week of the 16^th (the week immediately following my last treatment) was still on the downhill slope but this week I’m starting to feel a little better.

Not well, but better. I’m going to stick on light duty for at least another week but at least I was able to do dishes and clean up around the house yesterday without feeling completely destroyed, just kind of destroyed.

This bodes well for the next few weeks, at least until I have to go back for my next three doses.

Light duty

For years, probably since the beginning of my nursing career, I had envisioned a time when, for whatever reason, I would no longer be doing bedside nursing. My dream “retirement job” has always been some form of telephone triage and today I have achieved that goal. The only down side is that it is temporary while I work the BCG fatigue out of my system.

My light duty is to cover the Covid symptom line for employee health. Employees that think they may have been exposed or that are having worrying symptoms call the number and I read down this whole list of questions to determine if they should get tested, if they need to quarantine and for how long, when they can go back to work, etc.

The charting is kind of a pain, but I am sitting at home in a dark, quiet room with my laptop and an algorithm/decision support tool and I don’t have to see another person or even change out of my pajamas. This is as close to a dream job as I am ever likely to get.

Edited to add; I was feeling pretty good today, like almost back to normal. Then I took the trash out (not something I usually struggle with) and am pretty seriously beat down again. When I stopped to think, I realized that probably why I felt good is that I hadn’t really done anything all day. 8 hours of “work” talking to people on the phone while I was lying in bed, leftovers for dinner so I didn’t have to cook anything, then sat around for a few hours generally being a slug.

The light duty is probably a really good idea.

Treatment #6

Fortunately this week seems to be going much better than last week, which is not a high bar to get over. I’m back to just feeling stupidly tired all the time but no nausea, chills or bladder spasms, so improvement?

This was the last of the first round of BCG treatments and I am very hopeful that, once I don’t get anther dose next Monday, I will start to recover a little bit of my energy. Of course now that I am (hopefully) a week away from starting to feel better I’ve finally managed to get some sort of light duty sorted out so I’m going to start working again tomorrow doing something for employee health, exactly what isn’t really clear. Never fear though, I do still intend to take full advantage of every minute of light duty I can get, even if I start feeling better immediately.

Fun story; I’ve had a great deal occupying my mind recently and had completely forgotten that, at some point in the semi-remote past, I signed up to take the CES-A exam. No, not Certified Excel Specialist in Accounting, Certified ECMO Specialist – Adult. (aside – what kind of special hell do people who create an initialism that contains an abbreviation go to?) This is a 100 question test developed by the American Society of ExtraCorporeal Technology and the International Board of Blood Management which is designed to demonstrate the subject’s knowledge and expertise in various aspects of extracorporeal life support. The test is at 7 am tomorrow, is supposedly very challenging, can’t be rescheduled, and I haven’t studied for it at all. I did, however, drop $400 for the privilege of taking this test so I am absolutely going to show up and take it anyway, I just don’t have very high hopes about passing.

Wish me luck.

Clever title

Something that I never really understood, in all my years of working in health care, is the patients with serious illnesses that couldn’t stop talking about how lucky they were. Couldn’t wrap my head around it. How can people consider themselves “lucky” when they also have advanced heart failure, or some kind of progressive neurological disease? Or cancer. Someone who was really lucky wouldn’t be sick in the first place, right?

What I think I am beginning to understand is that I’ve been looking at it from the wrong perspective. This is not “lucky” in the sense of “I just won the lottery” this is “lucky” in the sense of “the building I was in exploded and collapsed around me but I didn’t die”.

So with that out of the way, I am exceptionally lucky. This whole thing could be so much worse.

I have a support system of friends and family without which my current situation would have gone from difficult and unpleasant to catastrophic. The material and mental support I have received has made it possible to navigate this whole thing with at least some sense, somewhere in the back of my mind, that things were going to be okay eventually. The loudest part of my brain is still saying that things are terrible now and the whole thing is so unmanageable that things are going to be terrible forever, but the actually smart part of my brain knows that even though I have fallen out of an airplane, I have a parachute. Lucky.

On the other end of the spectrum is the American health care system and everything surrounding it.

I have been missing a lot of work. Like I think I’ve probably only worked maybe 5 or 6 days in the last several weeks. When this whole thing started I tried to get a medical leave from work. The Family and Medical Leave Act of 1993 (FMLA) requires employers to provide employees with job-protected and unpaid leave for qualified medical and family reasons. It also set up a federal system for managing leave granted under the law but said that employers could set up their own system as long as it was substantially similar to the federal program and provided substantially similar benefits. I knew going in that, one way or another, I should be able to get some kind of approved leave.

I feel like I should say, at this point, that I am not an expert at navigating the consumer side of health care. Far from it. There are almost certainly easier and better ways to attempt what I have been attempting but they certainly aren’t obvious.

Anyway, so I contact my primary care doctor, human resources at work and the third-party company that manages medical leave and related things for my employer. Got paperwork rolling and things were looking okay. Then I find out that I don’t qualify for medical leave through my employer because I haven’t worked there long enough. I can’t remember what the requirement was exactly but I wasn’t even close. Fine, if I can’t get this through my employer I’ll just dive into the state and federal systems. Except I don’t qualify for those either because my employer has their own system set up and I have to go through that.

So I gave up on the idea of medical leave and some time passed. As it became more and more apparent that I was not going to be working full time through this I started looking in to the short term disability insurance that I pay for as part of my health benefits at work. This seems, on the face of it, to be a perfect fit for short term disability. I am, to a greater or lesser extent, kind of disabled right now but, because I am very lucky (see above), it should be pretty short term. Great, lets get this going.

Step One: You must be on approved medical leave to access your short term disability benefits.

Well shit.

So there it is, the Greatest Health Care System In the World™ – pay a lot, get a little.

Edited to add; This is how dumb I am – The whole time I was dealing with this whole question of leave and benefits and insurance I was thinking that what I really needed was a social worker. Many astute readers will immediately pick up on the fact that I know a social worker, and a really good social worker at that.

I still think it is extremely unlikely that I will be able to get any kind of coverage for the time I missed but at least I have a couple new leads to follow.

Follow up

Yesterday was really rough. The bath felt amazing while I was actually in the water but as soon as I got out I felt worse than before. Chills (no fever though), headache, weakness, dizziness, nausea, and what I think could only be called a severe generalized malaise, in addition to the ongoing bladder spasms. After a few hours of wishing I would just hurry up and die already, I gave up and took every pill I could think of that could possibly even maybe help (for the record it was 1000 mg of Tylenol, 20 mg of Pepcid, 8 mg of Zofran, 200 mg of Pyridium, 120 mg of simethicone, 2 Tums, 3 mg of melatonin and 100 mg of sumatriptan). After that I finally felt better enough that I could eat something and go to sleep.

As an aside, I don’t recommend the “shotgun” approach to treating symptoms as outlined above. Not only does it lack any kind of style or elegance, if you throw the kitchen sink at your patient and they get better there’s no real way to figure out which of the 9000 things you did actually worked. That said, desperate times and all that.

Anyway, today is a little better so far. The Pyridium seems(?) to be helping(?) the bladder spasms and I’m back to baseline with maybe feeling a little wrung out from feeling so terrible yesterday.

hopefully this was a fluke and isn’t going to be typical of how I’m going to react to future BCG doses but, again, the only way to find out is to just keep going.

Treatment #5

Holy shit. I don’t know why exactly but today has been, very likely, the most difficult day I have had in this whole process so far. The fatigue, of course, is hitting me like a ton of bricks and I’m having these ridiculous bladder spasms that are new and are bringing an extra level of excitement to the whole thing.

If you have never experienced a bladder spasm, they are pretty remarkable. I suppose it would be analogous to bad menstrual cramps, which doesn’t necessarily help to paint a picture for those audience members who, like myself, have never had a uterus. Take my word, though, that they are very unpleasant. The bladder spasms that is. My experience with menstrual cramps remains second-hand.

The urology clinic staff suggested I try Pyridium (phenazopyridine) for the badder spasms and I’m optimistic about potential relief from that. However, while sympathetic, they still don’t really have a whole lot to offer that would mitigate the fatigue. In fact they recommended that I cut back on my caffeine intake because it is an irritant and could be making the bladder spasms worse. So there.

The good news is that my manager at work could not have been any more supportive through this whole thing. She is looking in to some light duty options for me for the next couple of weeks, which I’m certain will be necessary.

This absolutely sucks. I am very much not having a good time.

Edited to add; I have found the answer to a question that the rational part of my brain has quietly been pondering in the background since this whole thing started. The question being “how bad do things have to get before I give up the pretense that I can just power my way through this like nothing is happening?”

The answer is: this bad. I cannot deceive myself anymore. I may not be “sick” but neither am I well. This is the limit. Merely human after all.

Edited additionally to add; You know what’s awesome? Bubble baths. I know we’re in the middle of another excessive heat warning but I am, right this very minute, soaking in a nice warm bath with lemon-ginger bath salts. It is really helping me feel less terrible.

Starting to feel like a broken record

Fatigue. Fatigue, fatigue, fatigue, fatigue. I really have difficulty trying to express what this is like. If anyone has had a car with a starter that failed, the feeling when you sit down, turn the ignition key and it just goes *click*, that’s kind of what it’s like. It’s not a dead battery exactly, everything is there and everything should work but somehow there is a connection missing that prevents anything from happening; “I think I’ll do some dishes.” *click* “Or maybe I’ll just sit on the couch”. “I have to go to work tonight.” *click* “Or I’ll go to bed”.

As I briefly mentioned, a couple days ago I decided to try kind of an experiment. I went to bed early and slept until I woke up. I stirred around for a little bit and then took a nap, and after I woke up I took another nap. Something happened that I can’t recall ever happening before; I slept until I genuinely could not sleep any more. Around 10 hours of sleep at night, two or three naps that lasted a couple hours each and I was wide awake. But I still felt exhausted and still didn’t have enough energy to do anything.

I suppose it would be like being on a strong muscle relaxer or a weak paralytic. Your brain is wide awake but you just can’t move your body.

I’m fully willing to accept that there may be a psychological component to this as well. This sucks. I’m not enjoying it. I can’t do everything I need to, let alone anything I want to, which is frustrating and upsetting which makes it even harder to try and muster the willpower to do anything.

Fortunately, as previously mentioned, I only have two more weekly treatments left (one after tomorrow!) but I have no idea how long it will take for my energy levels to get back to something closer to baseline. I suppose there is nothing for it but to wait and find out.

Basement Demolition: Complete etc.

The basement demolition is, as stated in the title, complete. We have a pump now that I have been assured will keep the basement dry during anything short of a Biblical flood. I’m trying to be optimistic about that.

The reconstruction will be in three phases. The first phase is wall reconstruction and painting which will start in about a week and take probably 5-7 days. Second phase is floor reconstruction which will take place at some point after the wall reconstruction and probably won’t take more than 2 days (if that). Third phase is unpacking which will start after the floors are done and take as long as it takes. I’m hoping that everything will be done by the end of October.

In other aspects of my life, the fatigue from my treatments is running roughshod. Last night I slept until I couldn’t sleep anymore and I’m still exhausted. I went downstairs to survey the wreckage and start making preliminary plans for reconstruction and that took all the energy I had. It’s really a good thing that I only have two more of these weekly treatments. I’ve missed two days of work this week and I’ll just have to see how I feel tomorrow.

It is enormously frustrating. I take stock of all the activities I’ve done over the last two days and the list is not long. At all. Somehow, though, I don’t have enough energy to do anything more and, while one part of my brain knows what is going on and understands, the other part of my brain will not shut up about how lazy I’m being.

As I believe I’ve mentioned, sometimes my brain is not particularly helpful.

Treatment #3

Once again, the process itself was completely unremarkable. I asked the treatment nurse about side effects, specifically fatigue, and whether or not what I was experiencing was out of proportion or beyond what was expected. She observed that the overwhelming majority of people that she gives BCG treatments to are past retirement age or otherwise not working and they still complain about fatigue.

I am absolutely willing to acknowledge, what with everything else I’ve had going on over the last 18-24 months, that the lack of energy I’ve been experiencing may not be entirely the result of the BCG. There are certainly other factors that could all be coming together to make me feel like I have been feeling. That said, I’m sure the BCG isn’t helping.

I’ll see how this week goes but I may very well look in to going on light duty for at least the duration of my remaining weekly treatments.