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.

CT Results

Well, I got the preliminary results back about the CT Scan. Not good. The tumour is "more pronounced" so a bit bigger, or at least easier to see on the scan. I'll have to wait till next week to hear the radiologist's report, but it seems like the last 5 weeks of chemo haven't done much, except perhaps slow the growth. This is not good news if my goal is to shrink the tumour and then possibly to be able to have resection if it gets small enough. The lymph nodes seem about the same apparently, although again, we'll have to wait for the radiologist's report.

So, next week I start on radiation. It will be every week day. I'm not looking forward to it. One of the three chemo drugs (epirubicin) will be stopped during radiation, but I will still be doing the cisplatin doses, as well as keeping the 5FU pump going.

Fever is gone

The fever broke last night, even before taking my first antibiotic, so that is good. It means I have a bit of an appetite back today.

But, just for balance, it looks like my internal stent got blocked off last night because the external flow of bile greatly increased, but I am cautiously optimistic that it stopped within the last hour... we'll see. There was quite a bit of confusion after leaving Vancouver as to exactly what plumbing they had left inside me. It turned out that I have an internal stent on the left side of the liver, which is really doing nothing, since that side (more like 1/4) has basically stopped working. That was clearly visible during the HIDA Scan I had a few weeks back. The right side has an external drain connected to a tube that is perforated to allow the bile to enter, connected down below to another stent which sticks out of the liver into the duodenum. So, it is the bottom part of this right-side plumbing that usually does the bulk of the drainage. Before the procedure, just before leaving BC, I only had the external drain, and that was producing something like 1.2L/day - roughly, but my observations over the last few weeks of having this external bag attached again have always shown between 50 and 400mL. It may be that the bile is also draining around outside of the stent, especially if the pressure builds up, as can happen when the external bag's tube gets kinked as I move around.

So, in conclusion: be thankful your plumping is internal and just works, it is a major pain to do it manually.

More antibiotics.

Well, at least this time I wasn't admitted. I gave a bunch of blood samples, and my blood counts were not too low, so I will just be on oral antibiotics for a week. And with luck the fever will go away after a day or two.

New Fever

I don't catch any breaks. I threw up again this morning and I have a headache and my temperature is up to 38.6. The good news is that this means the lump may have been swelling due to an infection. But, I'll probably have to go into the hospital today for some blood work at the minimum. Ug. I am now waiting for a phone call from the Cancer Clinic to see what they suggest. I feel sup-par for sure, but I've been worse.

CT Scan on the 22nd.

I called my oncologist to let him know about the lump, which is now very obvious to me - even standing. He moved up our meeting to the day of the CT scan, this coming Tuesday. So I'll know on the same day what is going on - which is great. It would have been a long week to wait for the results. He said it might be something else, not necessarily the tumour itself. For example, it could be swelling around the stent (I just made that up, but why not), but the CT scan will tell us exactly what is going on. Having something visible (other than the earlier Jaundice) somehow makes it more disturbing, but is also weirdly grounding in a way. I can say - yes there it is, that lump is causing all my suffering. I almost feel better about going in for radiation in a few weeks too - now that I can see something there to be blasted.

The Lump

Well, I have noticed a somewhat disturbing thing. When I am on my back I can now feel a lump below my right ribs. I assume it is the tumour. Now, it may just be because I am thinner now than before, and there is no fat there to hide it. Well, the CT scan will say either way what is going on. I have the scan next Tuesday, and unfortunately I don't get the results until I meet with my Oncologist the following Monday.

If it turns out that the tumour has actually grown over the two chemo rounds, then I would want to consider switching chemo agents and horses in midstream, but I suppose the radiation should at least go ahead as scheduled. The tumour may have shrunk too, I really don't know at this point. Also, I have no idea how the lymph nodes are responding, which is very important.

My round of chemo yesterday knocked me flat - I was very tired and pale, but I didn't throw up. And it is clearly an easier one than when I get the cisplatin too. (Update: well, I just threw up now, but i feel better for it)

Feeling better.

I am feeling better and better every day mentally since the deep hole I went into last Wednesday & Thursday. So, I definitely will not be taking the steroid the next time I take the cisplatin, I'd rather just vomit instead. I'll still be on the other two anti-nausea drugs, so I hope it will be ok. And now, while I have my appetite back, I am trying to gobble as much food as possible to fatten myself up for next time.

Smells like gas / hair today...

I have become hyper-sensitive to the smell of gasoline now. I can smell cars driving by, and it makes me gag. Needless to say, it is an annoying development. Also, unfortunately, it seems my hair is shedding now. It just started. So this will be fun.

And, just for some balance to the glum news, I do have an appetite back, so I am trying to gain some weight back.

Taking less drugs now...

Well, on the plus side, my 3 different antibiotics are all finished, and my anti-nausea + steroid drugs are now done too. So that is down from taking about 10 pills a day down two 2. I am just on the pain killers now, and I feel like I could almost skip those a little bit, which seems to be a good sign that at least the tumour doesn't seem to be growing rapidly, and might even be shrinking. Just being optimistic.

On the downside, I still feel completely stir crazy, tired and achy, I think from lack of exercise as much as anything. I would love to go on a 10km hike, but just a few hundred meters and I want to sit down on a bench for a while.

And day by day I am more and more sick of this bag of bile hanging off of me, I wish it could be removed. It seems to be draining mostly internally, so I would love to just pull out the external tube and have one less external tube coming out of my body. I'd still have the PICC line with the 5FU pump, but one would be better than 2.

I hate flavours now.

Even water tastes metallic and weird. And yesterday after breakfast the smell of coffee alone made me vomit. I am on 8mg of Odansetron + 4mg of Dextramethason (a steroid) every 12 hours for nausea, and then Stemetil every 4 hours as required (it was) to stop the nausea. The steroid makes me highly restless and the last two nights I had a lot of trouble sleeping, and during the day I am pacing around like a lion in a cage, unable to sit still for more than a few minutes at a time. I am almost done though, and I hope by tomorrow it will be all settled down.

Weathing Cisplatin

Well, I am feeling nauseous and highly restless, but so far I have avoided vomiting by being vigilant and taking the anti-nausea drugs every 5 hours (setting my alarm for the middle of the night too). If I can last another 24 hours I should be mostly clear. No other news. This is mostly an endurance test. I tried to sleep today and otherwise distract myself.

Cisplatin Today

I am going in for another round of chemo today. This time it includes cisplatin which is the hard one. I already feel nauseous from the 3 antibiotics I am taking, so I am not too optimistic about the next couple days.

In other news a couple veins in my arms clotted off due to abuse from IV lines, but apparently they will sort themselves out eventually.

Discharges

Discharge form the hospital: I'm out, and I now have 3 different antibiotics to take orally for a week (giant pills that would be a choking hazard for a baby). I am happy not to have to spend another night in the hospital.

Discharge from my liver: On the down side, the stuff pouring into my external bile bag doesn't look great, but as long as it keeps flowing I guess it is ok. Also the quantity now flowing externally leads me to believe that the internal stent is blocked again - and I am not surprised, seeing the chunks of unknown solids in the bile.

Discharging tomorrow.

The plan is for me to discharge from hospital tomorrow, and then continue with a course of a new antibiotic taken orally at home. So, bar any unforeseen difficulties, tonight should be my last night in a hospital bed for a while.

Yawnburcups

I discovered something while experiencing all the pain in my liver and at the site of my bile duct drain. It really hurt to move my ribs suddenly, so I lived in fear of an involuntary movement caused by an unstoppable yawn, burp or hiccup. I started to quickly suppress them as soon as they started, to the point where I would experience an involuntary movement in my diaphragm and not really know what the end result was going to be. I called these yawnburcups. Then, for a little while the suppression itself became automatic and I would release a yawnburcup in a series of uncontrolled steps. Now that all that pain is gone, and I can walk upright and yawns are yawns and hiccups are hiccups.

Still an Inpatient

Well, I am still an inpatient, despite feeling good again because they want to run the full course of IV antibiotics which lasts for 7 days. It seems like I have another two nights in hospital. I have to have the IV drip every 6 hours and between them I can leave the hospital if I like, but that means I really need to spend nights there, which is not fun - it is impossible to get a good sleep. The other man in my room is 83 years old and just had major surgery yesterday, so they were waking him up all night long to check on him and get him to cough and breathe heavily and so on. He seems to be doing very well. So that was going on all night, and I have my own routine that got me up at midnight for a drip and half an hour later (to have the IV removed), and then again at 4am for blood work, and then again at 6am for another IV drip... yawn. I could use a nap now. I found out that the reason they do the blood work at 4am is simply because that is when the requisitions come up from the lab. They could be waiting till 6am - so tonight I'll ask them to hold off.

As for my plumbing, it is unsure whether or not it would be possible to do an ERCP procedure for the stent change on my right side, which would be a prerequisite for removing the external drain. That way they could come in again with an ERCP for future changes. I am keen to remove the external drain. Imagine the luxury of actually being able to take a relaxing shower without having saran wrap hiding my dressing and worrying about soaking it, or, if I could be so bold to whisper this dream, imagine the luxury of a bath! Although maybe it is fitting that my last bath was actually in Japan. Anyway, if I got another stent blockage and I didn't have the external access to be able to drain into a bag, it would be not good. Any full internalization of the bile plumbing would have to be done with a larger stent to reduce the chance of a blockage.

The only other thing to mention is that for some light reading I have started into The Cancer Ward by Solzhenitsyn. It is the third Solzhenitsyn book I've read - I recommend him.