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.