Not a Good Day

Today is the first day in a long time that I became extremely angry. Thankfully, with my BK situation, I was able to hide in the bathroom for awhile before erupting.

You don't have to empathize, understand, or even be sympathetic; however, I do expect that those who read this are aware of my very sensitive sleep situation. Basically, I'm exhausted, I haven't really slept since late April, and the coup de grace has manifested itself through the BK virus.

Side note: Whenever I search for personal accounts or go through cancer forums, it seems that for most people, BK is just another side effect that they mention in passing. However, when I talk to the nurses or doctors on the ward, they say that most people who contract BK find it to be overwhelming. It's odd, but I cannot find good information on BK, nor can I ascertain when it will subside or at least start to improve.

Anyhow, I finally fell asleep this morning and would have been on track for three precious hours of uninterrupted sleep. Within 15 minutes of falling asleep, I was woken up to be told that construction had commenced within 5 miles of the VA facility. As a policy, any immunocompromised patient had to wear a surgical mask until told otherwise. FYI, all my oncologists agree that those masks are worthless. All they do is keep others at bay because people think that you are highly infectious.

Then, once I was woken up, there was an unexpected shift change. Each time nurses change their shift, I have to do a little routine: take a set of vitals while sitting, take a set while standing, listen to your lungs, listen to your heart, what are all your symptoms, rate your pain on a 1-10 scale, where is the pain, what happens to the pain after the meds, let's review your meds, squeeze my hands, take off your clothes and show me the rash, check your weight, when was the last bowel movement, how was it formed, blah, blah, blah. What is the point of a pass down and log entries if you are just going to reiterate everything with the patient. Yes, yes, yes, I understand the need to be thorough and double check, policies, procedures, whatever; but let's use some discretion when a person has a nasty virus that prevents sleep and they have finally fallen asleep.

Now it's passed 09:00 on a Monday and we have a full staff. Everyone stops by thinking their five minute question or concern for me is not a big deal. In the aggregate, things add up and I won't be able to sleep until after the duty day which is around 17:00. Yet 18:00 marks the time for Prednisone--the nasty steroid--which should have me up and jittery for a few hours.

I've said it before, and I will say it again: hospitals are essential for fixing people up, but they are the absolute worst for recovery.

Also, today is going to be a long day. I have an outside appointment for some treatment that should help controlling the GVHD. Nothing like a burning/stabbing pain up your urethra while sitting in traffic or waiting for an appointment. And if that's not enough, I have gained ten pounds of IV fluids as they try to flush my system; i.e., more urination, more blood, more pain.

Anyhow, I think I've complained enough for now; but I am getting frustrated with this hospital stay. It was unexpected, I don't have an end date, and I'm unable to control my sleep schedule. Apparently "DO NOT DISTURB" is a magnet for disturbances. It's like an attractive nuisance, and I'm the one who is liable for all the petty intrusions.