No one said it would be easy
But no one said it would be this hard
- Sheryl Crow
Apologies for the lack of updates. When I wrote last Friday that I would update soon, I meant it ... but then the wheels fell off. We didn't really know it on Friday or maybe Saturday, maybe not Sunday but at some point they came off.
We had been used to going into the day unit of BCCH on Wednesdays but a couple of weeks ago, Alex entered a new phase of treatment called "interim maintenance." In this phase, Alex has chemo every ten days so if we are then on a Wednesday it will be coincidental. Alex had chemo last Friday, a dose of Vincristine and big dose of Methotrexate. He was fine until that evening but started throwing up around 5 or 6 p.m. Nothing unusual in that - chemo makes one barf, or most of us anyway, and that was about the right time.
He kept right on being sick through the night into Saturday - we were up all night Friday. Things calmed a little late Saturday and I thought we might be over the hump but, whammo, we were up all Saturday night as well.
I made a big mistake on Sunday. I should have taken Alex in to the hospital. I didn't because he had stopped throwing up, or at least it had abated a lot and again I thought we had bottomed out and should be turning up. But on Sunday night the nausea returned again and didn't really let up until early Monday morning. This was now night number three in which Alex and I hadn't really slept very much. He seemed a bit better Monday morning but he wasn't drinking anything and I thought we should go in and get checked out. I thought he was a bit dehydrated and that we would get him some IV fluids for a few or several hours and then be right as rain. The chemo should have been well clear of his system, get him caught up on fluids and we'd start bouncing back.
It was a mistake not going in sooner but Alex had been that sick before, a few times he had been very sick for 48 hours or so. And then he would turn up. But this time he didn't. In fact I thought I was calling time out more as a preventative measure by going in. Wrong.
That was Monday morning, it's Thursday night now and we're still here. And we'll likely be here a while yet.
That's not all because of dehydration. Alex has, his doctors think, been this dehydrated before but it really seemed to hurt his kidney function this time or was it the Methotrexate? Or both? The kidneys were severely stressed in any event and the doctors were playing with his fluid balances and electrolytes and despite, in the words of our main doctor, having had enough anti-emetics to stop an elephant, Alex was still being very sick all through Monday night at the hospital. We were in a small room on "2B" and again we were up pretty much all night. Four nights with little or no sleep and I felt awful. But I hadn't had chemo, I wasn't throwing up and feeling miserable and being poked by nurses and doctors, I can't imagine how Alex felt.
(It sounds a bit absurd now (how can you be so stupid as to stay up four nights in a row? Idiot!) but of course you don't plan on being up for four nights - if you knew that ahead of time, of course you'd plan differently, let someone else take a turn. You don't plan on being up for one night but you are so what are the odds you'll be up for two, then three? And now we're in the hospital, things will settle down and Alex and I will get some sleep ... wrong. Wrong again.
I think we all were a bit scared on Tuesday. Cynthia, me, the doctors are too professional to be scared, and Alex doesn't get scared, but we were. The newly developed Balfour/Miles Theory of Benign Neglect stipulates that when all of a sudden you have three doctors with you all the time, this is usually reasonable grounds for being alarmed. When they say you're going for a chest x-ray and the chest x-ray gets done within 7 minutes, the technician and a radiologist are waiting for you and you go straight in ... that's not what you want. Well of course it is, but really what you want when you're in hospital is to be largely ignored. These docs are very good - and very busy. So really, you want to be ignored, neglected benignly, this means you aren't very sick. The radiologists and everybody else are incredibly busy too, so if you need an xray, waiting for four or five hours to get slotted in (a day is even better) is a good thing - it means you're not that sick. But when you're getting a lot of attention, hmm, Alert!
Here's what happened Tuesday.
One of the residents noticed some puffiness around the base of Alex's neck. It looked like fluid was building up there but to the touch it felt ,,, different, spongy to me, I learned later that doctors often call it "Rice Krispies" because it sort of feels like that under the skin. It didn't to me, but it did to them. It sounds crackly through a stethoscope (I didn't listen myself, hey, their word's good enough for me.)
Its proper name is subcutaneous emphysema. It basically means air that is trapped under the skin, usually in the neck and face, although Alex had developed some into first his left arm and then right arm as well. So where does the air come from? Well that was my question, I'm sure everyone else already knows. One of two places - either from the respiratory system (almost always the lungs) or the digestive system (even more almost always from the esophagus). The chest x-ray would provide some clues.
The theory was, and is, that violent retching can sometimes cause a tear in the esophagus or cause one or more of the little air sacks in the lungs to pop. What was puzzling is that if it's the esophagus, there's usually a lot of pain associated with it and if it's pulmonary there are usually other respiratory issues like a collapsed lung or difficulty in breathing or a pneumothorax. Alex had none of those. And, if you have a perforated esophagus, your condition tends to deteriorate rapidly, Alex's wasn't.
If you have this condition , I think you want it to be from the lungs. It's not great but it's reasonably straightforward and can often just heal itself. You don't want to perforate or tear your esophagus. We have a lot of nasty bacteria in our GI tracts and you really want that contained and not leaking into other parts of the body. It doesn't get a lot more serious than that. Google "perforated esophagus" and see. And if you've just had chemo and your blood counts are starting to decline, that's not going to help.
"Now don't be alarmed, but we're just going to bring the surgeons into this just in case, just so they're up to speed as well." Okay, now we have three doctors, an x-ray technician, a radiologist (he's a doctor as well) and the surgeons are checking in. This does not score well on the benign neglect theory.
We told ourselves, Cynthia and I, and I'm sure I was talking to my erstwhile brother-in-law Geoff the emerg doc guru by now, that it wasn't, couldn't be a perforated esophagus. You'd know. It would hurt. But one can't be too careful. There was this very small possibility, tiny possibility that it was, but if it was, then there was a very, very high probability that it would be very, very bad. And that thought gnaws at you.
I thought we were here for leukemia. Where did perforated esophaguses (esophagi?) and subcutaneous emphysemas come from? Nobody said anything about that. Whiskey Tango Foxtrot?
The xray didn't show anything conclusive on the lung side. Often one would expect to see a "pneumothorax" in a case like this which is air trapped between the chest wall and the lung, then that air seeps out into the tissue. Not this time, the lungs looked fine. There was no indication of fluid having leaked out of the esophagus so that was good. So the theory was that the retching had caused an air sac or two to burst, likely near the top of a lung and that's where the air had come from.
But just to be sure, the surgeons wanted to do a barium swallow test. You drink a barium based liquid while they xray your esophagus and see if there are any leaks.
I feel so badly for Alex so often, it's heart wrenching and often harrowing for a parent to watch their child go through something like this. You feel so helpless and inadequate and useless and frustrated. A lot of the time. Most of the time? But it was a real low point going down to radiology on Tuesday evening for this test. The poor guy hasn't slept for four days now, was throwing up constantly (oh, somewhere during the afternoon in there he got a blood transfusion as well as his haemoglobin had dropped to a very low level from the chemo.) He'd been through a hellish day already and now he was being strapped to a table to be xrayed and asked to drink some nasty tasting concoction - and not throw up. The table gets turned upright so you're in almost a standing position but a few feet off the ground and a huge xray box kind of thing slides down around the outside the table following the flow of the fluid. He looked like some grotesque thing out of a Transformers movie. Two radiology docs, two technicians and two nurses present at 8 p.m. on a Tuesday night. No neglect here, dammit.
I watched the flow on the screen too. I didn't see any leaks. They didn't see any leaks. No leaks. I'm sure we would've been happy if we hadn't been so tired.
There were still questions about Alex's kidney function and his electrolyte levels were a touch wonky so we still had some things to worry about and in addition to all the other great docs we had a couple of nephrologists lurking around. We have been very well looked after.
We got better sleep that night, but you still get woken up for blood work and vital signs being checked and the like. My cot is a modest upgrade from the the Korea issue I had last time, and I'm quite happy with it. We were moved up a floor to "3B" where "we can monitor you better" and Cynthia (the incredible and amazing Cynthia on all levels) managed to snag the cot and move it up with us.
Wednesday and today have been largely uneventful. The kidney function was much much better by Wednesday morning but not quite right so tinkering with fluids has continued. As noted before there is a bit of uncertainty as to whether this was solely due to dehydration or is there something specific to the Methotrexate treatment? The renewed focus is now on nutrition. Alex hasn't been able to eat or drink although he started to nibble a little this evening. We would really like to see that improve the next couple of days. His weight is very low now.
I guess things are improving. The emphysema has noticeably decreased (the air just gets slowly absorbed by the body). In addition to the central line access for IVs that is implanted in Alex's chest, he had an IV put into the back of his hand on Tuesday so he could get the blood transfusion without interrupting the other medications and fluids. And once that line was in, might as well use it for other things! It came out today and it had really bothered Alex all along so that's good.
Last night, I counted seven IV bags hanging down, as I type this there are only four so I guess things are getting better. I'm writing which I was either too tired to do or too fed up to do so maybe that's a sign as well.
Aside from the possibility of the perforated esophagus it hasn't been scary. It's just been a bunch of things, one damn thing after another, Mr. Hubbard said. It grinds you.
It's been a really tough time, physically, mentally, you name it. I'd like to use the "emotional rollercoaster" cliche but there haven't really been a lot of ups.
Just a lot of weird stuff.
