Not so bad this time around.

The cisplatin hasn't been so bad this time around. So far. I am taking an additional new drug for anti-nausea (Aprepitant) which was quite expensive, but was mostly covered by my health plan. And it seems to be working very well so far. I am still taking Ondansetron for anti-nausea too, but I cut back the steroid by half that goes with that one. And, the biggest one for my feeling of extreme restlessness and frankly malaise, is that I am now taking generic Ritalin too (yes, that's right) - for a week now, and that effect is immediately clear to me, and is definitely beneficial, so I will stick with that throughout the rest of chemo. Oh yes, and I am also now taking an appetite stimulant. And still the antibiotics for my ongoing infection. And the pain meds. In my previous life I rarely even took an aspirin for a headache, now I am a walking pharmacy.

But, as I say, so far (touch wood, cross fingers, etc.), I have not fallen into the hole the cisplatin has dumped me into the previous two times. One factor may be that I am not also getting the epirubicin this time, since it cannot be given during radiation.

As for the radiation, today I got my second dose which went smoothly and quickly, I felt nothing again. Nothing much to report there. I am on so much anti-nausea medicine that I didn't even notice a bump in nausea from the blast to my gut.

First Day of Radiation.

Well, it was my first day of radiation today, and also a cisplatin day. So far - so woosy. This won't be a long post. Radiation itself is nothing really. Just being still while they zap you. No immediate physical sensation at all. I guess the thing to watch out for will be the damage over time. As for expected nausea, well... as today was my big chemo day, I am feeling the effects of that overwhelming any signal from the radiation. Maybe next week I'll be able to discern a radiation effect more clearly.

I am on more drugs now for various chemo side effects (I'll skip the litany), and, yes, still going with the antibiotics, and certainly the antibiotics are needed as the infection doesn't seem to be over yet.

I'm not looking forward to the next 3 days, but by the weekend I will be though the worst of it. At least my throat and mouth sores cleared up, so eating (and vomiting) will be easier.

CT Report, etc.

I heard the CT Report this morning, which was actually slighly more optimistic than we had thought. Basically the main tumour is about the same as before, it is hard to tell because it is somewhat amorphous, but the growth was mostly halted. And the lymph nodes are only fractionally larger. Let's hope the radiation added to the mix will start some shrinking.

This past weekend was, relatively, great. I was able to hang out with friends in a semi-normal fashion, so that was excellent. I was even able to even play some bocce, although I tired easily. And, I haven't vomited since last Thursday night, and my sores in my throat and mouth have mostly cleared up.

It is good to feel strong before tomorrow's cisplatin dose and also my first radiation dose. I will be getting radiation every week day for the next 6 weeks. Tomorrow will be a long day. At least I know that I will, after 3-4 days, crawl out of the hole that cisplatin may push me into.

Apart from the dealing with the ongoing bile infection fun, the only thing I am trying hard to do is to gain weight.

Throat and Mouth sores.

One side effect of 5FU is mouth sores, which I now have. Specifically a huge swollen uvula (the thing which hangs down at the back of the roof of your mouth). Last night I vomited twice and the acid coming up was extra searing and ripped this sore on my uvula, I think causing a little blood even. Hard to tell. It was painful and awful, frankly. Throwing up every few days isn't really doing wonders for my throat and mouth with these sores. So now I am on a mostly liquid diet because it is too painful to eat solids.

On the plus side, the bile is draining well today.

And More Antibiotics

Well, I just came back from my follow-up appointment with the doctor who admitted me to hospital for the original infection (almost 5 weeks ago). And a culture did grow from the bile sample taken 2 days ago from my liver, and so I have a candida infection. I will be going back on fluconazale for that as well as extending the cipro that I have already been taking. Certainly a candida infection could explain all the solids I have been seeing. I'll eating some yogurt too - it couldn't hurt while I am on all these antibiotics.

As for the plumbing, it looks like we'll just maintain the status quo for now, and see what happens. It is annoying but as I really have no choice, I can live with it.

Bile Draining

I am becoming an expert in observing my own bile drainage. At least through the external tube, and through some inference the internal stent as well. Last night I was hiccuping again in the middle of the night, which seems to happen when my liver is swollen with bile and it presses against my diaphragm (just a theory). Anyway, I woke up this morning with a sore side, feeling like the bile had been backing up inside me. It hadn't drained into the bag all night (for 11 hours), so I was nervous about my morning saline flush. Twice a day I try to inject 10mL of saline into my bile ducts through a 3-way valve at the external drain site.

I managed to get about 6mL in, and then it started hurting a lot, much more than usual. As in unbearable pain for 5 minutes - because the bile ducts got over dilated. Even 1mL less might have been much more tolerable. I need to be so careful, and this is why I am very hesitant about letting anyone else do that flush. So we were all concerned this morning and thinking of calling into the hospital, but I tired another flush 15 minutes later, and that time all 10mL injected smoothly, and now it is flowing again out into the bag.

The contents of the bile itself , lately seem to range from a clear tea coloured fluid, to something more akin to porridge. Back in BC, before I started chemo, it was only ever clear and dark. The solids coming out are mostly dead cells, but also a little congealed bile too. And it really varies. For 5 minutes it might be clear, and then 5 minutes of junk, and then 5 minutes of bubbles, and then back to clear again. I have no idea what the dead cells are though. It could be because of infections I have had and/or do have, or they could be dead while cells that have been fighting the tumour, or white cells fighting the infection, or they could be chunks of the tumour itself (best case). But a lot of solids have come out over the last month, much more that could be the tumour, or else I wouldn't have a tumour left. So who knows.

Today, as it happens I am going in to see the doctor who admitted me the last time I got infected, just as a follow-up appointment, so I will mention all this. It is interesting, but no doctor really seems to specialize in bile, and there isn't much to be said for looking at the discharge under a microscope because it would just be dead cell walls and it wouldn't be possible to say what those cells used to be. Otherwise, I'd be getting a microscope myself and trying to see.

Now, maybe I have a live culture growing still in my bile. So, just a few days we took a sample of the bile drainage to try to grow a culture from it, so we'll see what becomes of that, although since I am taking antibiotics again (cipro), it might dead and not prove anything.

All in all, this whole external bile drainage seems like a huge hassle to me, and along with the PICC line, having two tubes sticking out of me all the time is just annoying. But... necessary for now. It sounds like radiation will cause swelling and swelling in my case could mean more blockage of the bile ducts, so I will probably have to live with this for at least another 7 weeks.

Today was good

I felt pretty decent all day today. Good energy levels, and I didn't vomit, unlike half the days recently. Nothing really else to report. I am gradually getting mentally ready for the cisplatin dose next Tuesday and also the start of radiation.