Impermanence

In this blog I have tried from the outset to keep it mostly clinical, and definitely to spare mentioning anyone by name, etc. Obviously all this talk about terminal liver failure, family meetings, and at what point should they pull the plug on me is very sad and overwhelming for me and my family. And, fittingly, just as I typed that last line, a doctor from the palliative care team came into my room (it has been a non-stop busy day). I have also just made a will, finally, and got it witnessed and I hope it is good enough. It is certainly simple enough.

When I was meditating in Thailand at Suan Mokkh, I heard various lectures from the monks there. The worst public speaker was Ajarn Poh - the abbot of the monastery there. His talks were always in a flat monotone that made it very hard to pay attention. But later, I must admit his talks stuck with me more than any others. He talked about impermanence and suffering - basically the idea that life is flowing onward and both good things and bad things will all pass eventually, and that the ego that gets attached to things/events/people/etc will suffer. I like to build sandcastles, so this made a lot of sense to me. Well, at the time I only thought about impermanence within life, but now I find my mind is brought back to this idea. I am thinking about the impermanence of my own life, and the death not only of my body, but also of my ego, my self image, of me.

Being closer to death does not seem to bring any greater understanding of it. The death of "me" (self/ego/etc) is still quite soundly beyond my comprehension. I can say how it makes me feel: if it were not for my empathy and sympathy of the suffering of the people who will mourn for me, then I wouldn't really be too sad at all about the prospect of my own death. I've had an interesting and good life, I am satisfied, and I have no regrets or grudges or lingering anything. Well, the big exception is that I wanted to have many more years of happy love with my wife - but that is something that would have happened in the future - not a regret of the past. And that is what I mean about empathy and sympathy for the people who will mourn for me. When I cry, and indeed I have been crying a lot since being diagnosed 6 months ago, it is certainly not because I mourn my own death, it is that I am sad now, in the present, thinking about people who will be sad in the future after I die.

Well, I don't want to be too depressing, things are still very unknown. My liver might be ok, relatively, and might not give out on me just yet. I hope to still get out of hospital and go home and start taking Tarceva® - maybe get another 6 months out of this Lachlan-life. Or maybe hit the one in a million jackpot and shrink my tumour down to a pea.

Transfer to the main hospital.

Last night I transferred here to the main hospital where my surgeon and oncologist are. Previously I was up at the University Hospital. The major difference is that here, my surgeon know my history and is taking charge and coordinating everything. Last night I was in a very small shared room, that smelled strongly of feces when I was first wheeled in there. This morning I manged to beg for a single room, and I am in it now. Whoa - 8 people from the GI team (a doc, residents, and students I guess) just crammed into my room to discuss my GI tract bleeding with me. So it goes with a teaching hospital. Their goal/task is to stop me from getting any more bleeds. To that end, over the last week I have been taking some drugs and blah blah... basically the root problem is the low platelet count.

My 30 hours of NPO at UH turned out to be useless because they finally decided not to do a scope again of my stomach. What we did do early yesterday morning was a cholangiogram. I swear they got me in and out of there for that procedure in less than 5 minutes. I never even heard the radiologist's name. Unfortunately, the apparent good news that my tube was fine as far as he could see, brings with it underlying bad news, since it begs the question why is my bilirubin so high if the tube is draining.

At this point hematology is still completely stumped about the platelets. And I hope to meet my surgeon later today to discuss the next steps in figuring out why my bilirubin is so high.

More bleeding / Platelets low / Bilirubin high

Things have not improved at all. I vomited blood this morning. I drank too much fluid too quickly at breakfast which caused the urge to vomit, but then there was fresh blood in it - like the night I came into emerg here. My platelets managed to hit 20 a few days ago, and I was optimistic, but they are now back down again. My bilirubin keeps going up, and I keep getting more and more jaundiced.

My surgeon visited and suggested a few things. One is that I should transfer down to the main hospital where he is where my oncologist is, so that people who know my history can be involved in my care. He said that the worst case scenario here is that my liver itself is failing at the cellular level, in which case I could be close to catastrophic liver failure. The other major risk is that might I start to bleed uncontrollably. So, because of those possibilities, he agreed with the medical team here who suggested that I need to have a "family meeting". I didn't really understand what that meant until he explained it to me. I thought it was a kind of group meeting just to make sure all the teams were on the same page for what is going on with me, but he said it was more to draw lines as to at what point I would want to be still kept alive if something catastrophic happens. Thus the involvement of both the docs in charge of me, and my family.

By the way, we haven't heard back from my original surgeon in Vancouver yet, but the 2nd opinion here (from the more adventuresome surgeon) was also that the tumours can not be removed, given all the aforementioned reasons. Essentially nothing on that front has changed much since March, if anything it is worse now.

So tonight I am NPO (nothing to eat or drink) because tomorrow I might have a scope again to look at the bleed in my stomach, and I will definitely have another cholangiogram to check what is going on with the tube.

No change, still in hospital.

My 2nd round of internal bleeding had mostly stopped it seems. My platelets are still low. Nothing will happen on the weekend on the diagnosis front. On Monday all my teams (medicine, hematology, G.I.) will apparently meet and try to make some kind of guess as to why my platelets are remaining low. Meanwhile I wait.

Platelets <10 again.

I may be stuck in hospital for a long time. No one can figure out why my platelets are being consumed, and as far as I know they have exhausted the tests they might do to try to figure it out, so essentially they are out of ideas, and are now just hoping I will get better on my own. Meanwhile, I am not getting better on my own.

So, I got another platelet transfusion and we wait and see. To say the least, I am not happy about all this.

UPDATE #1: I have blood in my stool again, so I am going back on Pantoloc by IV, and back onto a clear fluids diet. They also just did my blood work again including the liver enzymes because I seem to be more jaundiced than ever. The whites of my eyes are pure yellow. My stomach is bloated, so they plan to do an abdominal xray... whoa speak of the devil... they are here now with the stretcher for the xray. Over and out.

UPDATE #2: My bilirubin is up to 270 - no wonder I look extra jaundiced. I must be losing even more weight on this clear fluids diet. Chicken brother and apple juice - not really going to pack on the pounds with that.

Wireless access in my hospital room.

Hi, I'm back online. My platelets are still very low, but at least they managed to come up from <10 to 14 on their own. A normal platelet count is above 150. So, if that upward trend continues for a few days, I should be able to get out of here. If not, then I will have to stay put.

I am now on a different antibiotic call pip-taz for short, I can't recall the full name. I have one bug in my bile that is luckily easily fought with a variety of antibiotics. I am still getting fevers about once a day, but it is not really clear if that is a reaction to the bug, or perhaps my body just likes to whip up a fever when I am tired in response to the tumour.

Generally speaking I feel pretty bad. My stomach always feels bloated when I try to eat or drink, but I try to force some in anyway. Especially liquid, since if I can't manage it orally, they will hook up another saline bag by I.V. The one great thing about this hospital stay is that I lucked out on a single room. Being able to sleep without have a roommate making noise makes it a lot easier.

hospital again

Lachlan went into Emergency on Saturday night. His platelet level was dangerously low so he was given a transfusion of platelets. He was admitted to hospital and has had more transfusions - platelets and whole blood. He is stable now and the bleeding has stopped. They have not been able to give an explanation about why this happened but an infection may have caused it so he is on an antibiotic.

Burped up blood.

I just burped up a mouthful of blood. Heading into emerg now...

More fevers...

I had a fever of 38.6 last night. It is 38.1 now. I am spending the day in bed I guess. At this rate I will probably end up an an inpatient pretty soon. I feel very short of breath I am am not doing anything. I haven't just climbed the stairs, or walked or anything.

Platelet Transfusion today.

I had another long day in the hospital today. I was bounced around a bit, and ended up in the cancer clinic stretcher bay with my Oncologist directing things, and calling in a consult with a Haematology doctor. Anyway, the short story is that my platelets dropped from 25 to 10, which is a dangerously low level. Platelets that low can cause random bleeding - not good. So they gave me a transfusion to temporarily bump them up. No one knows yet why this is happening, but the Haematologist should have a better idea. He said the the main theories are that the spleen is consuming too many platelets, or I have some internal bleeding, or that my bone marrow has suddenly decided to be useless, or that there was/is some drug interaction that was causing this. Really only the last one seems possible given other observations, but we'll see. It may be that we never know.

Also, my bilirubin is even higher now. It is up to 150, so I am even more jaundiced. And all that comes with that. Not good.

They had a bed ready for me to be in an inpatient, but I am very glad I was able to come home. I may have to rush back into Emergency on the weekend (for instance if I start bleeding internally), but we'll see. I hope nothing happens. One solution to all of this is that it just gets better on its own without anyone figuring out why it started.

Guessing at causes.

Platelets: No one has any idea why my platelets suddenly dropped to 25. One idea is that the spleen is eating them, in which case I might need to have my spleen removed. However my spleen has been enlarged for weeks, so it doesn't fit in with the observation that they suddenly dropped this week.

Bilirubin: I was told yesterday was that my bilirubin might be high because of the left side of my liver going through some death rattle or some sort. This was guessed at by my surgeon's resident because the ultrasound that I did yesterday mentioned again that the left side of my liver was blocked off. But, it has been that way for months, so I am sceptical that that is the problem. My feeling is that the radiologist is wrong. I think the tube has been pulled out by an inch or more. The black line that should be flush with the skin is now pulled out - the nurse noticed this first, and this is causing the bilirubin/jaundice problem - especially if it moved the internal stent too. This time, I had the same radiologist who did the tube change from hell, so I don't trust him at all, frankly.

One piece of good news is that blood test I did yesterday showed the liver function indicators are still ok, so the right side of my liver is not dying. Not yet. The other thing was that my bilirubin dropped from 136 to 126 - from Monday to Tuesday... naturally, no one knows why.

Future Cancer Treatment: - more guessing. Since cholangiocarinoma is basically unresponsive to treatment, this is all guesswork somewhat. Looking at studies, they all show mediocre gains, but never big reductions in tumour size. Currently, I am leaning towards Erlotinib (Tarceva®) because it doesn't harm the blood levels (there are other side effects), although since Gemcitabine is so commonly used to fight Cholangio, I feel like I should try it, even though it is systemic and I had such a rough time last time with all that systemic chemo. I really don't want to go though that again. I still need to see my surgeon to discuss - well, everything, but one thing would be Radiofrequency Ablation. I need to sort out my more immediate problems first, however.

So, I need to talk about the rest of what the hell is going on with me with my surgeon. One very troubling and annoying development is that my whole liver is in pain. The painquite intentse sometimes, it migrates out to my ribs (the nearest nerves I suppose) and I have to increase my morphine dose to combat it. My surgeon has a clinic on Friday, so I will try to endure everything until then. If things get worse, I will call/go in, of course.

Jaundice / Future ideas.

Last night I looked in the mirror as I was brushing my teeth, and noticed that I was quite jaundiced, it was easy to tell in the eyes, and then I looked at my skin in places that don't get exposed to sun (which is almost everywhere) and it was yellow there too. I had an appointment lined up with my oncologist this morning anyway, so I called ahead before that to let them know that we would definitely need to do a blood test to check the bilirubin level. Mine has been moving around between 25 and 45 over the last few months. Today it was over 140. The other odd thing is that my platelet count dropped to 25, when it should be over 100. Actually I think 150-300 is normal. Apparently the platelets could be gathering in my spleen - I have no idea why. My other blood levels were ok.

We discussed possible future treatments. I am not really willing to do another heavy round of systemic chemotherapy since the last round was so rough and was only marginally successful, or indeed, it might have done nothing, it might have all been the radiation. So Radiofrequency Ablation might be an option, also he suggested we could try Erlotinib which is ~$3000 a month.

Since my oncologist doesn't know about bile tubes, he suggested I walk over to see my surgeon to ask more about the jaundice. The surgeon was busy in surgery but I got to see one of his residents, who agreed with me that I needed to go to interventional radiology ASAP to get them to do a cholangiogram to see what was going on.

So... back over at interventional radiology again, waiting around a bit, but thankfully they were able to squeeze me in. They did a cholangiogram, changed the stitch and the dressing. The cholangiogram showed that the internal stent was blocked. Again. I was surprised by that since it seemed to be flushing ok. I flush my bile tube every night with 10mL of saline. The radiologist said he has no idea why my bilirubin had suddenly jumped up to 140 - so he sent me back to see my surgeon's resident. So back over to the other building again...

The resident said there could be a number of causes. Ranging from something simple like a gall stone, to the right side of the liver losing function, presumably due to loss of blood flow from being choked off by the tumour, and dying like the left side did some months back. Of course the later scenario would be very bad. I only have one liver.

This Wednesday I am now scheduled to have an ultrasound of my liver and also to do a more detailed blood test to break down the bilirubin measurements to determine the source. Sorry, I don't recall clearly what he said about that. On Thursday I will go in to see my surgeon who doesn't have a clinic but will run up to see me between operations to talk about the results of all of this.

Meanwhile I am jaundiced, and concerned.

Last Friday's meeting with my surgeon.

We discussed the new CT Scan results, which were basically the same as last time, with a few troubling additions. First, there is something hard in my portal vein, blocking more of the flow. It may be a blood clot, or it may be the tumour itself. Either way it is not good. Second, my spleen is enlarged and we are not really sure why. It could be a leftover of radiation perhaps. Even though he re-iterated that resection was not going to be possible, I asked him to send a copy of the scan to the surgeon who was looking after me in Vancouver, and also to another surgeon here in London. He said I could cap off my external bile bag, which I did happily. Unfortunately, that night, just as I went to bed, I developed a fever and was shivering uncontrollably, so I had to attach a new bag again. The fever seems to gone away by now, but other annoying/worrying/painful things have happened over the last few days which I will write about shortly.

CT Results - same as last time.

So nothing much changed. I am meeting a surgeon tomorrow to discuss it, and to ask him if he will send the results to other surgeons just in case one of them decides they might be able to go for it. Odds are low though.

Had CT Scan today - no results yet.

I am meeting with my GP on Wednesday so I hope the Radiologists report will be ready by then. And then I can find out what the real results of all the chemo and radiation were. On Friday I see the surgeon so we will discuss the details then.

Some news from day to day hassle front: It is no longer painful for me to swallow, but my digestive system still seems to be very slow, so that over the course of the day I fill up until I am bloated by the time dinner rolls around. I am doing my best to eat and eat and gain weight, but it isn't having much result.

On Saturday night, I somehow managed to damage myself under my left ribs. Maybe it was from the vomiting, or maybe I just slept on my left side funny. In any case, on Sunday I could barely move without severe pain there, and if I breathe in deeply or yawn then I get a shock of pain too. Today it seems a bit better, so I hope it will recover quickly if it is just some bruising or some torn muscle or something. I have no idea.

CT Scan coming up on Monday.

Nothing much to report. My energy levels go up and down. I sleep a lot. I am still <140 pounds, even though I eat as much as I can. It is hard because I can't eat too close to bedtime, or I will vomit. That has happened three times so far. So I try to stuff myself earlier in the day. The pain when I eat seems to be a bit less, so I hope the reflux effects will also settle down. I also need to exercise more (more than zero should be easy) - to try to regain some muscle.

My fever last week seems to have been quickly stopped by the antibiotics, and also my own immune system. I am still taking the antibiotics. I'll do them for 17 days in total.

My CT scan is coming up on Monday. I hope this time I do not vomit the contrast fluid like last time. I will try to drink more slowly and gauge my limit.

I notice that the wikipedia page on cholangiocarinoma has expanded (linked on the right here). A user named "Salzmandavid" seems to be the one writing most of it. Not a very uplifting read, but informative.