Arrangements have been made for a private family service and cremation for tomorrow morning. There will be visitation at the Westview Funeral Chapel, 709 Wonderland Rd North, London, from 6.00 to 9.oopm on Wednesday 10th September.

Dear friends,
Lachlan died at 10.15pm on Monday 8th September 2008. He died at home with Ikuko and his parents at his side.
At Lachlan's request the cremation will be immediate and it will be a private service for his family. There will be a visitation at a funeral home after. Please no phone calls for now.

So weak and thin.

I lay down on a futon on the floor to avoid having my head in the direct sun. But, I was too weak to get up off the floor into my real bed. When I first came back into this house after 2 1/2 weeks as an inpatient, I thought it was premature a bit to house me on the ground floor, but in retrospect I haven't been able to tackle stairs in days. So that was a wise move.

I am sitting up now typing this because the horizontal position, while causing pain, does cause a lot more nausea. So I threw up my attempted intake of food today Boost(tm) and Ensure (tm) and Gatorade (tm) and Blueberries (tm) and Water (tm)... I started taking an under-the-tongue drug to fight this & hiccups (which are a huge problem for me) with the side effect of making me sleepy.

In light of all of this, please don't call - I won't bother to answer I just don't have the energy to talk. I like getting all the emails, but even then it may take weeks for me to respond - if ever. Sorry everyone.

Turn for the worse.

I am now on the pain killer pump. It pumped into a small needle into my chest. Yesterday was very hard. The nurse didn't think the pump was working, so we had to order another one, and then wait to connect it.

Threw up a lot in one go just before the nurse arrived - lots of burning acid - despite not having eaten all day, which goes to show how much had backed up into my stomach.

My bile is leaking out into gauze dressing, at quite a rapid rate now. It is also very painful there where the tube enters the skin.

When I lay on my back, I hiccup all the time, and I feel like burping, but I can't and this sometimes leads to throwing up in my mouth.

And, just for the icing on the cake I now have a DVT (blood clot) in my left leg. I can only cross my fingers that it doesn't move into my lungs again.

Finally, right now I am going all the way across town again to the hospital to get an ultrasound. And i might get tapped - meaning drain fluid - I don't know.

Pain

The bloating/Ascites is as bad now as it ever was. Yesterday I spend the whole day horizontal mostly, because it is more comfortable that way. Today seems much the same so far. I will try to make this post brief, s oI can go lay down again. So, sorry to those who have emailed me and I have no written back.

My GP is trying to organize a pain pump for me, basically morphine on tap. I'm not sure if I want it because it will mean being tethered to a device. The plus is, I suppose, that it is one less goddamn pill for my failing liver to try convert into my bloodstream. Also it allows the pain control to be faster and more efficient.

My whole sense of taste is gone. Everything that even has a touch of salt in it seems way too salty to handle eating. Really nothing tastes as it should anymore. I get cravings for food, and then when i try them that always disappoint. I am hungry and thirsty at times, but as soon as I eat or drink my bloating gets that much more painful which pushes a strong negative feedback not to consume anything at all. On Sunday, I was not too bad, although I didn't eat much all day until dinner. Yesterday was terrible.

I feel I am in a small sailing boat in the ocean, with the mast broken, with storms and waves tossing me about in the dark. I have no idea if I will die this week or in 5 months, or even that tiny hope that I will recover (If the Tarceva is doing anything useful). This limbo and not knowing is hard. It wears me down.

I am signing up for Expected Death in the Home (EDITH) - staying at home is my strong preference. After that there is a palliative hospital called Parkwood which I would prefer over being in the actual hospital. Staying in the hospital has become torture for me - I will fight as much as I can to avoid it.

Sorry that this post has been depressing. I am going to lay down now.

Better than yesterday.

The bloating in my abdomen is back in a big way, but the pain from the tube change is subsiding. Overall, today is better than yesterday. I am still feeling quite bad.

On Thursday, they wanted to keep me overnight (at least) at the hospital to make sure I wasn't going to bleed to death. But I refused, and had to sign a waver form. I am so sick of staying in hospitals, I felt that I would rather take the risk and go home. And, for once, everything turned out ok (so far). My GP made a house call and took a blood sample yesterday evening, and my hemoglobin was about 120 - had I had an internal bleed, it would have dropped even lower. As a precaution, on Thursday, I set the alarm a few times for the middle of the night to make sure I wasn't getting dizzy or weak.

Alive, at home

Just a quick note to say I am alive at home. I had the tube change yesterday - which was needed as it was mostly blocked - it flushes much easier now with no resistance. My bilirubin was up over 500. I was at the hospital for 12 hours, and they wanted to keep me overnight because my hemoglobin dropped from 114 to 84. I refused to stay - I could not bear a night in hospital. I have hit a wall. So, I had to sign a special form for that. Right now I am in quite a lot of pain. Despite the discomfort (understatement) - signs seem to indicate that I am ok. I will write more tomorrow about details if I have the energy.

Possible tube change tomorrow.

The plan for tomorrow is to go in early and get my blood tested again. If my platelets are very low we will not go ahead. If the tube is working well (checking with a cholangiogram), and the platelets are still low, then we probably won't proceed. If they are so-so then we will go ahead with a fresh transfusion of platelets. The radiologist who will be doing the procedure is trying to contact hematology now to see what level is acceptable.

I will start taking oral antibiotics (cipro) again tonight just in case. If we do go ahead with the procedure, then I will be getting pain killers and more antibiotics by IV.

Right now I feel very bad physically. My abdomen is bloated and painful. It is hard to sit up to type this. I will go lay down again now. Ug.

UPDATE: I feel a bit better now. Unfortunately I now have greenish pus now leaking out of the bile drain site. I just noticed an hour ago. That will make it less likely that the tube change will go ahead if we have to stick a new tube in through an obvious infection like that. Well, we'll see tomorrow morning.

Status Report

I was at the hospital to see my Oncologist this morning. I had a blood test before seeing him.

Platelets are back down to 28. Alas.

My bilirubin is up to a staggering 396. Keep in mind the normal level is about 10. This explains why I am so jaundiced. My eyes are very yellow, and when I scratch myself, it comes out yellow along with red.

I found out on Friday, accidentally and luckily, from the social worker assigned to my case that I actually have a tube-change scheduled for this Thursday. My surgeon has been away, and his office has been closed, but they will be back tomorrow, so I will call to ask if this makes sense with my current platelet level. Also, I am naturally somewhat hesitant about another tube change, since the previous two both resulted in me going to emergency and staying as an inpatient with Cholangitis. As it happens my drainage site is starting to hurt more now, and I am seeing chunks of solids in the external drain, which leads me to think I already have some infection starting there. In which case a tube change might be a good idea. The big thing would be that with the low platelet level, I don't want them to start a catastrophic internal bleed. I'd rather live to see this Friday, if possible.

So, we'll see if this goes ahead. If it does, then I will be checking in for day surgery on Thursday.

My energy levels are up and down. My digestive problems continue, pretty much as before. But, I guess not too bad all things considered. I even went out to a restaurant on Saturday night. The one thing that really shocked me about today's visit to the doctor was that my weight is down to 60KG (132 pounds). This is an all time low. I haven't been this weight since puberty. I have a scale at home, but I hadn't checked. I will certainly do so more often now. The last time I checked it was 150 pounds, but apparently that was all trapped fluid in the Ascities and in my legs, and it drained away leaving me even lighter. With the steroid (Prednisone) that I am taking, my appetite is better than it has been for months. I'd say as good as normal, before this this all started. I am eating tonnes. It is not getting absorbed into my body properly.

All of these indicators of sickness run counter to the way I have been feeling over the last couple weeks. I have generally been doing well. I have not really leaving the house, true, but I have been in decent spirits, and feeling somewhat confused, if anything, about the implications of being told I might die anytime 3 weeks ago in the middle of my time in hospital, and yet I am feeling physically not too bad (relatively). Hearing today about my various blood levels, combined with the looming pain in my side and the prospect of another tube change is starting to burst my little bubble that I have been in for the last few weeks. I dread being an inpatient in hospital AGAIN, and I will endeavour to avoid that if at all possible.

Finally, a friend of mine just sent this piece of news to me, from the Edmonton Sun. I will quote the whole thing, in case it gets pulled off line sometime:


August 24, 2008
Rare cancer strikes
Small community near Alberta oilsands has disproportionate number of bile duct disease
By VIVIAN SONG

A mutated, two-mouthed fish caught downstream from the Alberta oilsands caught the attention of the Canadian public last week. Beneath its first mouth is a confusing aberration, a second, baby, jagged-toothed lower jaw that seems to grow timidly out of the fish-face.

Two boys fishing in Lake Athabasca caught the 2.5-kilo goldeye two weeks ago and handed it over to the Mikisew First Nation.

The image is a repellent one, simultaneously drawing in the viewer for a closer inspection and pushing them back in a foggy state of double vision. But there's another story developing in the same region that hasn't captured the attention of mainstream Canadians as would a two-mouthed fish.

Perhaps it's because it's not nearly as visual a story. There are no tangible images of genetic mutations or abnormalities except for the erection of a few more gravestones.

Natives in the small community of Fort Chipewyan, 300 km north of Fort McMurray and downstream from the oilsands, have been dying of a rare bile-duct disease in disproportionate numbers.

When Dr. John O'Connor started treating residents in Fort Chip in 2001, he noted the unusual recurrence of cholangiocarcinoma, a rare cancer of the bile duct which normally strikes one in 100,000 people.

The doctor knows the disease well, for the illness killed his father. Three cases were confirmed in the community through biopsies.

"It was a town with a population of 1,200, a pristine location, an idyllic spot," O'Connor said in a June phone interview from Nova Scotia. "It was the pathology, that's what struck me. The community was far from small cities and towns and pollution, so it really struck me as peculiar."

Elders had been complaining the community was being plagued by diseases in numbers unseen after major oil refineries moved in nearby.

O'Connor raised the alarms, pushing for a public inquiry and garnering media attention. Alberta Health and the Alberta Cancer Board dismissed the concerns, concluding the cancer scares were exaggerated -- a report slammed for being hastily prepared and incomplete.

While the report found a "provocative" six cases of bile-duct cancers, officials concluded the overall cancer rates were comparable with provincial averages. Residents complained officials didn't speak to community members, while some charged the report was deliberately dismissive to coincide with an application before the province's energy board by Suncor Energy Inc. to expand its operations and double the amount of oil produced.

Meanwhile, in an environmental assessment commissioned by Suncor, the levels of arsenic found in local moose meat were found to be 453 times the acceptable levels.

In a subsequent study by Alberta Health, scientists lowered those arsenic figures drastically to between 17 and 33 times the acceptable levels.

"There is a function of mistrust," said George Poitras, the former chief of the Mikisew Cree and chairman of this month's Keepers of the Water conference in Fort Chip. "We feel the government's not respectful of the community.

"The government's usual position is to suggest the claims are far-reaching and absurd. But our fisherman see this time and time again," he said of the mutated fish. "It's happening more frequently than the government would like to acknowledge."

When O'Connor challenged the accuracy of the cancer reports, Alberta Health officials filed complaints against O'Connor for professional misconduct, billing irregularities and raising "undue alarm" in what critics say were attempts to muzzle a whistleblower.

He has since been cleared, but the charge of "undue alarm" remains outstanding. O'Connor now practises in Nova Scotia, driven out because of intolerable working conditions and stress. He continues, however, to treat patients via Telehealth and receives a hero's welcome from the community.

"I try to keep a low profile now," he said.

After mounting public pressure, the Alberta government announced in an embarrassing about-face in May it will be conducting a second investigation.

"It's a continuation of the investigation because of lingering concerns," said Lee Elliott, spokesman for the Alberta Cancer Board.

So far, in 2008, there have been six cancer deaths in Fort Chip. The final report is due out in the fall.

"Fifteen to 20 years ago, elders say you could scoop water from the boats (and drink it) and not be concerned," Poitras said. "Today, nobody would do that. Everything tastes differently. We see fish not only with two mouths, but with blisters and tumours ... Moose meat tastes differently and elders are noticing a change of migration patterns in birds. These are the concerns we're having."

BILE DUCT CANCER
Cancers of the bile duct (cholangiocarcinoma) are rare in the Western world, with less than 400 cases a year (one in 100,000) occurring in Canada. The cause of most bile duct cancers is unknown.

The biliary system is composed of:
- Bile ducts: The tubes connecting the liver and gall bladder to the small intestine (small bowel).
- Gall bladder: Stores bile which breaks down fats during their digestion in the small bowel. In people who have had their gall bladder removed, bile flows directly into the small intestine.

SIGNS AND SYMPTOMS
If cancer develops in the bile ducts, it may block the flow of bile from the liver to the intestine. This causes the bile to flow back into the blood and body tissues. Ultrasound and CT (computerized tomography) scans are commonly used to diagnose bile duct cancer.

Digestive Issues

My digestive problems continue, alas. Always got to be something. I suppose it is the advertised side effect of Tarceva. Also the predicted rash from Tarceva seems to be starting now.

One interesting thing is that I was taking Imodium aka Loperamide and it wasn't really helping very much at all. Then I tried seirogan from Japan, and it worked much better. The only downside (that I know of) is that the pills are very smelly.

I don't want to overstate the gut problems. It is a not great, certainly, but I am coping. At least I am not in the hospital, and my ascites is not really concerning me any more.

Platelet crisis seems to be over.

I just got my blood checked today and my platelets are up to 50, which is still very low, but a lot better than <10 which was just plain dangerous.

My Ascites (bloated abdomen) is also better, I am fairly comfortable (more or less), so I can hang around the house without too much moaning and groaning. Yesterday was pretty bad (gut problems, don't ask), but the rest of the week and today I am ok. I think my energy level is helped by the large dose of steroids that I am on. Generally speaking I am in much better shape at this moment then I was when I was being discharged from hospital.

The only trouble is that I am getting more jaundiced again. My bilirubin is all the way back up to 250. My eyes are not blue and white, but blue and yellow.

That's the news really. Nothing much else to report. There is talk of a tube change coming up which fills me with some trepidation, but I'll cross that bridge later.

Comfortable at Home

Not much to report.

My bed at home is set up nicely with some props under the mattress - to form a shallow V - so that my abdomen doesn't get extra stretched, and I can raise my legs so my ankles and feet don't fill with blood. With that set up, and a little help from a sleeping pill, I have had some very good sleeps the last few nights, which really helps with my energy level during the day.

Also, I'm not sure if I am just getting used to having a bloated abdomen or if the diuretics I am taking are helping reduce some of the distention, but I am feeling less intensity in the swelling. My abdomen, combined with my skinny arms and legs, makes me looks like starving African child, except I am not a child, I am not African, and I am certainly not starving - I eat a lot these days.

By the way, this bloated condition is called Ascites - you can read all about it if you are curious. In my case, I don't have cirrhosis of the liver, but portal vein is indeed partially blocked due to the primary tumour.

All this medical talk is a bit tiring. Anyway, the main point is that I am very glad to be at home and resting here. I have no plans for anything special, and that is just fine with me.

Back at home

I am now back at home. It feels great to be out of the hospital. I was in there for more than 2 weeks.

My abdomen is painfully distended, not from backed up food or drink, rather fluid between the organs. I will have to increase my dose of painkillers to reach some level of comfort again. I could get the fluid removed to release some of the pressure, which would last for a couple weeks until it built up again, however such a procedure would be too risky with my platelets still low. If I start bleeding, it might not stop.

I will start taking Tarceva® (it comes in pills) and see how it goes. The major side effect will be an acne-like rash on my face and neck. I am told it should not affect my blood. I may elect to give it up - we'll see.

My plan now is to simply relax at home and try to make myself as comfortable as possible.

Plan to go home next week, into palliative care.

If I don't have any more signs of bleeding, the plan is to allow me to go home into palliative care next Tuesday or Wednesday. I will be very happy to be out of the hospital.

If/when I have to come back, it will be into a palliative bed here. I hope. Ideally I can stay at home as long as possible.

My stomach is bloated and distended like a basketball. Despite the fact that I am passing both urine and solids. It hurts to sit up or walk around too much. I have gained weight back up to 152 pounds, but it is all in my bloated stomach I guess.

There was an idea to remove my spleen to see if that would help with the platelets, but my surgeon says I wouldn't survive the operation. Basically there is is still no answer as to why this has happened to me, other than it is a side effect somehow of the cancer.

That's about it, other than that I am just trying to survive being in the hospital. The food is skewed towards bland Canadian tastes, so I mixed it up at lunch by substituting a kids meal of Alphagetty - you know what - it's not that good, but it is actually better than 4/5ths of the crap they serve here anyway. There is also some kind of conspiracy to give me two bowls of beef or chicken broth with lunch and dinner. I have asked and asked to stop it, but still it comes. I can't wait to get out of here.

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.