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.

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.

Got another fever.

Alas, a got another fever last night. I had to re-attach the bile bag, and now I am on oral antibiotics. I spent the whole morning at the hospital. We checked my blood and my white cell count is back into the normal range, so I am not in so much danger as that night I went into emerg and then the ICU. The bile culture results will take longer.

Another annoying development is that my feet have started to swell up all the time. Presumably due to the tumour pressing against the portal vein.

Surgery still very unlikely.

I had two meetings over the last two days. Yesterday I met with my Radiation Oncologist, and today I met with the surgeon who took out my left stent. Lots to report about that.

Yesterday, I got a copy of the radiologists report, and I looked at the scans myself with my Oncologist - looking at the difference between March and last week. First of all, radiologists must perform some kind of black art to make sense of all those blobs of gray. I hadn't seen my own scans before, but I assumed they were a little more clear. Things like large cancerous lymph nodes are easy to see, but the primary tumour in the liver is just some darker shade of gray with medium gray boundaries. My Oncologist wasn't that great at interpreting the scan, and I certainly had no idea. Generally the primary tumour did seem a little smaller. I guess. Very hard to tell.

Meeting with the Surgeon today was very informative and useful, but also quite depressing. As a surgeon he had much more experience studying CT scans, and was able to say that the medium gray areas around the dark gray of the tumour were the uncertain part. Maybe they were also tumour, or maybe they were swelling or temporary damage from the radiation. He did say it looked to him like it was about 1cm smaller - which is what the radiologist's report says. So vaguely, from 5x6cm down to 5x5cm, which is still very large to have in the middle of your liver. So he agreed with the Oncologist that we should wait a few weeks before doing another CT scan to see if these medium gray areas go to light or dark. I now have a scan scheduled for about 3 weeks from now.

The really depressing part was more of a re-iteration of the things that were told to me back in early March. I am very unlucky to be so young with an otherwise healthy liver and get this cholangiocarcinoma (it is very very rare), and I am doubly unlucky that it is positioned in exactly the worst spot it could be, in the middle of my liver pressing right against and encasing two very important blood vessels, the hepatic artery and the portal vein. So his opinion was that based on the latest scan, there was still no way a surgeon would go in and try to remove it. It was much too big. And he doubted that things would show up as improved enough in the next scan too. Still, he said he would get other surgeons to look at the scans (he wouldn't be the one who would resect) and get their opinions too.

Another piece of bad news is that there is a tumour marker, measured from a blood sample, called CA199S. Apparently in a normal person this would be about 30 U/mL. In early March, before treatment started, my level was about 6500. Last week it was measured at more like 15000. Now this may be a spike due to radiation, so before the CT scan we will check it again.

We also talked about growth rates, because I really have no idea how fast this thing is growing, and thus, assuming no further treatment (which is unlikely - I'll do something, I guess), how long do I have to live? He said a typical doubling period for cancer (not necessarily cholangio) might be 120 days. Of course, I don't know how large a tumour I could tolerate in my liver before things really go awry in my system. Needless to say, all this news is all hard to deal with. But I am glad I am informed.

So in other news, because the tumour is pressing on the portal vein, I will have to continue with the daily Fragmin blood thinner injections. Probably for the rest of my life.

My Oncologist tells me that my stomach and eating problems should settle down in a week or so. I hope he is right.

Any finally, the only real good news, I was able to remove the bile bag. I still have the tube sticking out to do daily flushes of saline to make sure everything is flowing well. If I ever get feverish, or swelling, or jaundice, I will have to attach the bag again right away. It feels good not to have it there smelling and looking disgusting. So yay! - a modicum of extra freedom in my life.

I need another CT Scan

Looks like I should probably get another CT scan, since the last one was unclear to the radiologist. I guess to the untrained eye it looks smaller. (I should see this thing for myself!) When we scheduled the CT scan originally, it was going to take place about 10 days after my treatment was done, but then all those complications happened that kept delaying my doses of radiation, so in the end the CT scan happened when I still had 2 doses to go. This means that the liver and surrounding areas would have been still been inflamed (probably still are), so it is apparently hard to tell the difference between inflamed tissues and a tumour. It may have also been unclear because I vomited up most of the contrast liquid I was supposed to drink before the scan.

Thus, when I meet with my Radiation Oncologist tomorrow, we should definitely schedule another scan. They are very busy withthe CT machines, so I hope I can get one reasonably soon. I also need to ask my Oncologist how long I need to keep injecting myself with Fragmin (blood thinner) - can I stop now? is this for the rest of my life? It depends how much of my problem was due to chemo and how much was due to the tumour choking of the major blood vessels going to my lower abdomen and legs. All I know, is that it is an annoying part of my day. But I will certainly live with it to avoid more clots that a) disable me, and b) could move into my lungs again.

I am also meeting with the surgeon who did my ERCP to remove my left stent. I'll ask him if I can cap off my bile bag for now. He already said (depressingly) that I could never remove that external drain, but I might be able to cap it off until some emergency happens. I flush it every day, and it seems fine - draining both internally and externally.

I am trying to move toward a semi-normal life as much as possible. Now that treatment is over, I am in a hurry to achieve some modicum of fitness so I don't feel like the walking dead so much. That said, apart from moving around the house a bit more, I haven't done much towards that goal. Although, it was only 3 days ago, on Thursday, that I was knocked down in bed, vomiting, and feeling terrible, so I should give myself a small break.

A parting slap.

Yesterday, apart from being low energy, I threw up most of what I ate, starting getting diarrhea, and couldn't lay down without the acid reflux rolling up my throat. Fun times. It may be the last gasp from the radiation. After all, it kills good cells just as well as it kills cancer cells, and it certainly hit my stomach somewhat. Or perhaps it is coming off all these strong IV antibiotics that I have been on. Yes, the nurses are no longer coming twice a day to give me IV drips and hook me up to an IV pump at night, which is a relief. Or perhaps it was just something I ate. Who knows. I feel slightly better than last night, despite my terrible sleep.

I have 4 follow-up appointments with various doctors over the next couple weeks. The radiation burn on my abdominal skin is turning into a tan. In fact, it hurts below that in my lower abdomen because that is where I jab myself with a needle every night to inject the Fragmin.

CT Scan, good news.

We haven't heard the radiologists report yet, but the initial look at the CT scan (done this morning) seems to suggest that the tumour has shrunk. I don't know by how much really, nor do I know if it shrunk along the hepatic artery or elsewhere at the edges.

The next step after getting the radiologist's report, is to shop that out to surgeons to see if there is a competent one willing to go for it, and remove the tumour in this new state.

I don't want to get my hopes up too much. But either way, it is nice that some good came out of my 13 week descent into hell. I know this is good news, but is hard to get too excited frankly, as all I want to do is sleep. All the time.

I have one more radiation to go. I didn't throw up today from the radiation, but I did from trying to drink all the CT scan fluid. The acid reflux is getting worse unfortunately. But I am coping. Right now I need to take my evening pills, inject fragmin into my stomach, and flush my bile drain, and then I can go to bed again.

4 more radiation doses to go.

I had one today and yesterday because my blood levels came back up to low but "acceptable for continued zapping" levels. On Friday, Monday & Tuesday there was a big hassle with trying to get a decent x-ray of me using the same equipment that I get my radiation doses from. They said I had lost weight since the original measurements, which were 13 weeks ago now. No kidding. Why did they just notice now, I wondered. So they were a off in their aim, but no one seemed concerned except for me. In the end, yesterday, we finally got a decent x-ray, and we were only a few mm off, so I was relieved, and we started the doses again.

Now I have 4 to go. Next Wednesday should be my last one. Unfortunately I vomited today from the radiation for the first time (a few hours later), so I will have to be more vigilant about taking anti-nausea drugs just after I get the dose. Also, the radiation seems to have caused/worsened Esophagitis, which makes it painful to eat - but not impossible.

I haven't measured a temperature over 38 since Monday night (spoke too soon that day), so I am hopeful that my antibiotics can end as planned next Tuesday. Which will be one good thing about Tuesday. The annoying thing is my CT scan which was supposed to come a week after radiation ended, but is now falling a day before it ends, is scheduled for 7:20am. I was never much of a morning person, but lately I need every minute of sleep I can get. So I can look forward to being to total wreck when I meet my oncologist later that day (after radiation) about the result. Just ideal for receiving heavy news.

Got another dose of radiation today.

Despite the fact that my neutrophils dropped to 1.3. My Radiation Oncologist rolled the dice and decided this morning I was fine to have radiation, but once again another round of blood work tomorrow morning to see if I can continue. My radiation schedule turns out to have supposed to be done this Thursday, but obviously with all these interruptions I am behind. How far I do not know.

Now some good news. My platelets are up. I think they are 103. And my hemoglobin crept up to 116. Also, the last time I have measured a temperature over 38 was Friday night. I must admit it hit 37.9 at some point, and I took Tylenol so I might have avoided one spike that way, but generally the fevers seem to be getting less frequent. They had better be less frequent because with neutrophils of 1.3 I am not fighting off much on my own. I have no desire to go back to Emerg with another brutal neutropenic fever.

Remote medicine.

Well, my meeting with the doctor today went well except for the absence of the doctor. He called it in. So I had my vitals (blood pressure, temperature, heart rate, O2 sats) checked and they were fine. Today, so far, I haven't had a fever, although I think the odds are near zero that I have seen my last fever spike. We also checked my blood again, and it hadn't moved much since yesterday, so the doctor made the call that I was not in danger of becoming neutropenic and so I didn't get an injection of neupogen instead they just let me go back home as-is. So, here I am. The nurse is still coming twice a day to hang my IV antibiotics, and to hook me up to the antibiotic pump for the night, and change my dressings.

Still getting fevers

Unfortunately my white blood cell count, and specifically my neutrophil count dropped again today. I was wrong yesterday about the white bloodcells being 2 - that was the neutrophils (the important kind of white blood cell) which have dropped to 1.5 today. I wasn't allowed to have radiation because of that.

I am still getting fever spikes about 38.2 every day despite all the antibiotics. So I am extra worried that my white blood cells and neutrophils are dropping. They should be raised to fight the infection. Because I was worried, I talked to a doctor after not having radiation, and he thought I should probably become an inpatient again. We will see. The whole thing is highly depressing, but I do not want to end up in ICU again. Tomorrow I am going back to the same inpatient oncology ward to meet with the doctor who discharged me, and he will examine me and make an evaluation.

Back online.

After many phone calls and many hours on the phone, with details too annoying to mention, I finally got Bell-Sympatico to set up a working connection here. I am back online.

On the medical front, my blood was tested this morning and my platelet count is still 68. Normal is 150 to 350. Also my white blood cell count is low again. I think only 2. Normal is 4-10. This means I need to keep checking my blood every morning before radiation. If my white blood cells drop below 1, or the platelets drop below 50 then I have to stop radiation again. Ok, I just put a reference to normal blood levels in the right column of this blog. My hemoglobin is ok. It is 114.

As far as the antibiotics I am taking, the way it works is this. A nurse comes in the evening, gives me one bag of cefazolin, then she attached me to a mini pump to inject half of the vancomycin (which takes one hour), wait 11 hours, and then inject the other half. This way the nurse doesn't need to sit around for an extra hour waiting for that one. The down side is that I am tethered to a pump which is in a bag somewhere between a fanny pack and a laptop bag. For the last few days, due to scheduling, I had to take it to the hospital with me for radiation. Still, this is a very minor hassle compared to what I went through as an inpatient. Especially up until they agreed to let me take something for my diarrhea when I finally came through negative for c.difficile.

I need to take do this for 2 weeks. I hope the antibiotics work. I am still getting minor fever spikes. Usually in the evening.

I have no idea how many more radiation doses I am scheduled for. Maybe 8? I hope my blood levels go back toward normal and I hope I can continue with radiation to get this damn treatment done.

Finally, on the pain front, recently, I have had to take more breakthrough pain pills - a troubling sign.

Getting out of hospital.

I got some great news from the doctor looking after me on this ward. He said despite the occasional temperature spikes, the trend looks positive, so I can go home and switch to having my IV anti-biotics there. So, he just scheduled CCAC (home care nursing) to come to the house twice a day for 2 weeks to hook up the antibiotics to my PICC line. Bar any unforeseen events, I should be able to discharge and leave within an hour.

Other good news is that my blood transfusion worked well to bring my hemoglobin up from 89 to 110, which should really help with my general energy level, but my platelet count is low, so I still can't resume radiation treatment yet.

[aside, I swear there are no less than 8 people talking to my room mate on the other side of the curtain right now - relatives, staff, etc - a total a cacophony, and it was the same yesterday.]

So, when I go home I will actually be offline for a a day or two, since Bell-Sympatico completely screwed up the transfer of the internet when my parents moved last Friday. They have the same phone number, just a new address. So yesterday Sympatico said it would be "24-48" hours before they could remedy their mistakes. Meanwhile my parents have been offline since last Friday.

So, that is about it. I am happy to be discharging. Signing off!

Still in hospital!

This is me again (and no longer my parents). It turns out there is wireless internet access (for a fee) on this oncology ward. I am still in hospital, and I hate it. It has been a week now, and no end in sight. They won't let me out of here until 48 hours after my fever goes away, and as of an hour ago I still have a fever. It had gone down for the day, but it just came back again.

After a weekend of the fever not going down they switched up the antibiotics and now I am on three of them. Also my white blood cell count is low, as is my hemoglobin. For the hemoglobin, they are giving me a blood transfusion (I am getting the 2nd half right now). For the white bloods cells I'll get some kind of injection.

Last Tuesday was total hell. I had swarms of people around me. Constantly poking me and doing everthing to me at once. For a while it seemed as if they announced to the whole hospital that there was a patient who need his stomach uselessly poked and prodded for as many times as possible, not to mention asking me my whole goddamn clinical history. In Emerg just before I got transfered under Intensive Care, they were trying to put another IV into me, as fast a possible, which meant two nurses were jabbing me on both arms at once. Finally they called in someone who was better at it and got the 2nd IV in. In intensive care the multiple wires and tubes connected to me were annoying, but the worse part was wearing the forced pressure mask that forced air down my throat. Kind of like wearing scuba gear except way less comfortable and much louder. Meanwhile doctors and nurses kept asking me questions while I was wearing it, so I had to scream to make myself heard. It was a nightmare. That said, it probably saved my life, or at least saved me from going into a ventilator with a fat tube shoved down my throat.

Now a week later, I am highly depressed and often annoyed as this place is always noisy and interruptive, but at least I am not in intensive care. It requires a lot of effort from me to attempt to be civil to people. I have zero desire for visitors and I don't want to talk to anyone, I think because it just reminds me that I am here and focuses and sharpens that fact into my face somehow. I'd much rather just distract myself by reading or, if possible in the place, sleeping.

I am done with chemo. There is no way I will attach that 5fU pump again just for another couple weeks of it. It was chemo's fault that I was so weak and so easily susceptible to infections. I can't wait for that poison to work its way out of my body. Radiation has been on hold for more than a week, but if my blood levels get better it might resume tomorrow. I do want to finish that, because unlike the chemo, the radiation might actually be doing something positive. Who knows.

still in hospital

Lachlan was transferred from the ICU at 2.30am this morning ! He is now on an oncology ward. Needless to say, he is exhausted from lack of sleep.
Apart from that he is doing well ... just on one antibiotic and heparin , no temperature, all vital signs are good. He had severe diarrhoea and they tested for C. Difficile but the culture came back negative so they finally gave him some medication and it worked immediately.
He had radiation this morning but has not been put back on the Chemo - 5FU.
He is scheduled to have an ERCP tomorrow. A tube will be put down his throat and they can look at the stents and probably remove the left one as the left lobe of the liver isn't working.
He is fed up with being in hospital and having a continual crowd of people coming to "do something" to him every fifteen minutes. He hopes that he can come home soon and continue the antibiotic at home.

Septic Shock update

Lachlan is doing much better. He is still in CCTC and will stay there for today and maybe longer. He will probably be transferred to a general ward later. The doctor would like to keep him in hospital while he has the antibiotics but a final decision hasn't been made yet. They were able to wean him off some of the medications and his blood pressure stayed up and is stable. His heart and other organs are functioning well. The only thing that they are still concerned about is the oxygen levels . He still has an oxygen mask but they have been able to reduce the oxygen percentage. He has been able to sit up in a chair for a while.

ICU

Lachlan went to the Emergency at 10pm last night because he had a high temperature. He was given an antibiotic and the usual battery of tests, including an x-ray, and blood samples were taken. His blood pressure dropped to a very low level and they gave him huge amounts of saline to try to bring it up. This helped a bit but not enough. The infection caused the blood vessels to leak fluids into the tissues and this dropped the blood pressure. He was first moved to another section of Emerg where they could monitor him better but when they couldn't stabilize the blood pressure and he also needed oxygen, they decided to move him to the Critical Care Trauma Centre ( ICU ). They gave him medications ( IVs) to "strengthen" the blood vessels and also two units of blood. and put him on an oxygen mask. He had six IV tubes at one point and they were monitoring and checking all the time. Eventually the blood pressure came up and seemed stable.
They took him off his chemo (5FU through the pic line) and cancelled his radiation for the day.
He is still in CCTC and seems much better but they are still concerned that he needs oxygen. They don't know where the infection is . His bile drainage tube is flowing well and isn't blocked.

Feeling Better

I have felt quite a bit better these last couple days. Relative to the last few weeks. I think getting lots of sleep is helpful. I can feel myself energized by a long sleep, and then gradually getting tired again as the day progresses. I should try to have more naps too, I suppose.

It looks like this anti-nausea drug combo worked again. To combat the cisplatin, I am taking ondanstetron, and 1/2 dose of the steroid that goes with it, and a commercial drug called Emend (aka Aprepitant). I managed not to vomit once so far since getting the dose on Wednesday, which is awesome. So, fingers crossed, I may have weathered cisplatin again without incident. I also suspect that not having the epirubicin in the mix has helped with nausea this last month.

And, even more good news: my tube change seems clean and uninfected. I didn't come down with a high fever with Cholangitus like last time, and the site itself seems to be healing well. I have one stitch there, but it looks clean.

Next Wednesday, I have another ERCP. He will be removing the left stent in the left side of my liver, since that side of the liver is not doing anything anyway. I assume he will also take a look at the right side and see how hard it would be to do ERCP stents replacements there. If it is possible, then it is possible that I could one day remove the external drain on my right side, which is currently capped off. I flushed the bile rube yesterday and managed to get the full 10mL in no problem, so it isn't blocked yet!

Having the bile draining again internally into my system will be useful for digestion of fats, which I certainly could use as I am pretty skinny these days. I am down to 138 pounds (measured in a hospital gown before my tube change). I try to eat as much as possible, honestly. I am also drinking Boost Plus (360 cal per bottle) as a supplement. Anyway, only 2.5 weeks to go before this scheduled chemo/radiation is done, and then I should be able to recover a bit.

Finally, my hiccups are still happening, but at a much reduced rate. They don't wake me up in the night, but when I do wake up to roll from my left side onto my back, then I often hiccup a few times before relaxing again. I can live with it.

Tube Change is done.

I had the day surgery for the Tube Change today. I admitted at the front desk, and then went into a day-surgery prep ward. They hadn't ordered any antibiotics for me, but I insisted that I should have some since the last tube change resulted in an infection. So, a phone call was made, and I got the antibiotics. I also got them to hang a big 2L bag of saline to help flush out the cisplatin from my kidneys.

The procedure itself went MUCH better this time with the painkiller (I'm not sure which one) injected in through my IV tube. The standard pain scale is 0 to 10 where 0 is no pain, and 10 is the worst pain you have ever experienced. Last time I had to re-adjust my idea of 10 because it was worse than anything I has experienced. This time it didn't go much past 6-7, and not for very long. All in all, I was quite satisfied. My fingers are crossed that there will be no complications this time.

I asked the doctor to upgrade the size of the tube from a 10 to 12 French, just because a larger tube is probably less likely to plug up and block. So my new tube (and the connecting internal stent on the right side) is a 12. I still have the external tube and 3 way valve sticking out of my ribs, but for the moment, the bile bag is not attached. If anything seems to be amiss (swelling, flushing difficulty, etc.), then I will re-attach the bag right away.

Radiation was earlier this morning. It was uneventful. 17 down and 13 to go.

Quick Update

I spent 6 hours at the hospital today getting my radiation and my 4th and last dose of cisplatin.
So far I am ok. Tired out, but ok. I am taking the same anti-nausea drugs as last time which managed to steer me though without vomiting once, so I am cautiously optimistic.

Tomorrow morning I have radiation again, and then I am going in for the day surgery, well day-procedure really (no scalpel involved, I hope!). The bile stopped leaking out of the drain site at my ribs. I am not sure why it started or why it stopped, but anyway the tube change is happening tomorrow, so that should leave me once again with some internal drainage as well as the external drainage out into the bag.

One little hitch is that I should be drinking lots of fluid today and tomorrow to wash the cisplatin out of my kidneys, but I will be NPO for the day surgery, so I won't be able to eat or drink. I am trying to counter this by guzzling even more now.

Bile Leak

I haven't written anything in a week because not much was happening, except that I have very low energy levels. Walking up one flight of stairs leaves me out of breath for a while. Moreover, I haven't written here, or contacted anyone, because I didn't feel like doing anything at all except sitting on the couch, reading the paper or watching tv. I don't even like tv, but I do have to say it requires zero energy to watch it, so that is what I have been doing. Well, I also inject myself with Fragmin every day, take my usual handful of pills, drain the bile bag, and get radiation every week day.

Things took a turn for the worse last night. It was another horrible night of hiccuping all night long. The hiccups and the pressure in my liver (pushing out against my ribs) have been building up over the last few days. This morning I woke up to discover that the gauze dressing on my bile tube was almost fully soaked with bile. It had been leaking out around the tube straight out of my ribs.

So, today was a long day at the hospital. I had blood work scheduled for 7:30am, and I was very tired from barely sleeping all night. Even though I can now walk again, the nurse taking my blood said I should get a wheelchair because I looked so pale. That was a good call. I felt very faint.

I had my radiation, and then sat around for a long time, and then met with my oncologist to discuss which anti-nausea drugs I would take for the cisplatin dose I am getting tomorrow, and to confirm that I was willing to continue for the next 3 weeks to see this chemo/radiation regime to the end. My blood levels and liver enzyme levels are fine (relatively), which is good news. On the down side I am still losing weight. I try to eat and eat, but I just get thinner and thinner.

At 1pm I went down to Radiology so they could take a look at my leaking tube site. They could have done a tube change tomorrow, but I have 5 hours of getting cisplatin tomorrow, so we scheduled day surgery for this Thursday to get my tube changed. This time I will be sedated.

Update

My right calf is slowly getting better. I still can't stand up for too long, which is a big drag as it eliminates walks or really leaving the house and doing anything. Crutches were useless, alas, as the problem is just being vertical, not having weight on it or anything.

Some other good news is that my hemoglobin is back up to 112. That is still well below the 140-180 average, but at least I am not quite so out of breath all the time now. Also, it went up on its own, without me having to play vampire and get a blood transfusion to feel better. Not that I would mind doing that.

The radiation has started to play games with my digestive tract. I spare the details of this one. At this point it is just a hassle more than a danger.

This past weekend was very rough for me, I went into a deep hole of despair which lasted until, well, until this morning. Those two nights in Emergency were hard, and basically they cracked my will. I seem to be out of the hole now. Today was a much better day mentally.

Finally, I am glad I didn't know about this while I going into Emerg with intense chest pain. If you followed the Canadian story about the quarantined train at all, then you'll remember that a woman died early on in that saga. Well, it turns out she died of what I have. Pulmonary Embolism. Luckily, I currently have a bunch of small, non-fatal clots. And my lungs are still operating at a mostly full capacity. You can bet I'll be vigilant about injecting blood thinner into myself every day.

Another Night in Emergency

Almost exactly 24 hours after the first time, at 1am, I was woken up with sudden intense throbbing pain in my left lower chest. My breathing was shallow and strained and my heart was racing. As we started to call the paramedics, the pain started abating, and it stopped 5 minutes later. I wasn't that keen to go into Emerg again and spend hours there, but I was convinced to err on the side of caution, in case the pain suddenly came back.

So, back into Emerg. Again. At least there wasn't a wait (for me), and I was taken straight in and proceeded to undergo another battery of tests. More blood tests, another ECG, another chest x-ray. There was no result to say why I had experienced the pain. Maybe it was the same clot acting up or perhaps another one lodging in a very close spot (the pain was just slightly higher up than last time).

When the blood tests came back, my hemoglobin had dropped again, down from 135 to 98 and then to 94 that night. In men, normal hemoglobin levels range from 140-180 g/L. The doctor in Emerg ordered a CT Scan (my 7th!) of my whole abdomen to make sure I didn't have any internal bleeding, and also a rectal sample to see if I was passing blood. The CT scan required drinking 2L of fluid over two hours. I had to stay awake that whole time slowly drinking till 5:20am when it finally happened. The result was that I was not bleeding, so the drop in my hemoglobin must be due to the chemo. I guess. I left Emerg about 7:30am.

Now I am back at home. Last night was uneventful. I still can't walk or stand for more than about 60 seconds without a lot of pain building up, still due to a clot in my right calf. In the hospitals this last week I have been using wheelchairs to get around. My right ankle swells up if I lower my feet for too long, so I am spending all my time horizontal. Alas, we don't have any full length couches, so I flip between using a lazyboy chair and as I am doing now, compressing myself into a love seat. I couldn't take the idea of spending the whole time in bed.

Meanwhile the radiation and chemo are ongoing. I have had 9 radiation doses and have 21 to go. Since it is the weekend, I don't have anything scheduled for today. I have just over 4 weeks left.

A Night in Emergency

Last night around midnight I started feeling more and more pain underneath my lowest left ribs. I took a couple extra painkillers, but the pain kept building and my breathing became very shallow and rapid, and by about 1am I couldn't take it anymore, and I had to wake up the house and we called the paramedics to come with an ambulance.

Since we knew I had a blood clot in my calf, there was the risk that it could have shot through my heart back out into my lungs (brain is not possible, I forgot how the heart worked, namely that there is a closed loop to and from the lungs before anything gets pumped out to the rest of the body). Anyway, to make a long story short I am not entirely clear what caused the pain, but they did a chest x-ray and then something called a VQ Scan. And it turns out I did have a number of small clots in my lungs, i.e. Pulmonary Embolisms. Presumably, some of those pieces were chunks from the one in my calf.

I am somewhat tired, as I didn't sleep well in Emergency, due in part to some woman with dementia (the nurse told me) screaming at random intervals. Around 3am the pain started to abate, and I feel much better now, hmm... only 12 hours later. My calf was unbearable yesterday evening, but today it is not too bad. I made it out of Emergency in time to make it to my radiation treatment across town at the cancer clinic. The home care nurse should arrive soon to inject me with my 2nd dose of Fragmin, which is, by the way, the same treatment if the clots are in my lungs, calves, or elsewhere.

Blood Clot

I spent 4 hours in the hospital today. One thing I hadn't mentioned is that since Monday I have been barely able to walk. I thought that it was due to the slight over exertion of walking in a park on Sunday. Both my calves were very painful starting Monday morning, which made walking a hobbling chore, but I thought it was just muscular pain because I am so weak now.

Unfortunately my right calf got worse over time, and today after radiation I saw a doctor about it. He recommended an ultrasound to check for blood clots because there are two factors that put me at risk for blood clots. First, the chemo itself makes them more likely, and second the tumour in my liver is slowing down all the blood flow in and out of my legs.

So, sure enough I had a blood clot in a vein in my calf. I could see the ultrasound and the blood is creeping around the clot slowly, but the clot takes up most of the vein. Needless to say this is more bad news. I now need to have daily injections of fragment Fragmin (a blood thinner) for at least 3 months. I got the first one today. Currently my calf is even worse. It is painful all the time now, not just when I am walking or standing. I hope the clot dissolves quietly over the next few days, as apposed to, say, dislodging and moving into my brain.

Cholangiogram

Well I had my 4th? cholangiogram this morning. It went smoothly and was painless, that is after I warned them not to put in more than 5mL of dye or I would be in great pain. The result is that, as I knew, the internal drain is indeed blocked, but the external one is still fine. So far the tube change is scheduled for late June still, and they said I will be able to do it as day surgery with painkillers rather than as an outpatient torture chamber style. I am happy about that. The surgeon who may do an ERCP on me later (I met with him last Friday) wanted my tube change bumped up to within the next few weeks, so I am not sure exactly when it will be. I will need to call his office to see what he thinks about the results of the cholangiogram, and what we should do

Also I had my daily blast of radiation, so 7 down and 23 to go.

Cholangiogram Tomorrow

My internal right stent is blocked again, so tomorrow after radiation I will go down to radiology and line up for a free spot to get another cholangiogram (xray of the bile ducts). I hope it is not too painful this time. They don't have an appointment for me, so they will try to squeeze me in. I hope that doesn't mean hours of waiting.

The hiccups were not so bad last night, but generally speaking, I feel terrible. I was very dizzy trying to walk around the cancer clinic this morning, I kept having to sit down and rest every 40 feet. So they gave me extra saline during my chemo pump change. And I took a
nap this afternoon. I wish I could fall asleep and wake up when this is over.

Hiccup Hell

For the last two nights, when I lay down at night to go to sleep I start hiccuping. I hiccup about once every 20 minutes? All night long. Sometimes it feels like I need to burp, but when I try to sit up and do that I get acid in my throat and it feels like I am about to throw up. Needless to say this makes for a terrible sleep. Just the last thing I need. Well, no, the last thing I need is another fever, or another bile blockage, or throat sores, or low blood counts, etc. But this is up there in the rankings of highly annoying. I will start taking my stomach-acid reduction pills (yes, yet another goddamn pill) which I had stopped taking because I hadn't been vomiting.
It just started a few nights ago, which is really a mystery because I can't think of any other symptoms that match it. For example, I might expect something extra to be pushing against my diaphragm. I don't know. I just hope it goes away.

Today is Monday. I have a blast of radiation scheduled for 1pm today. Tomorrow's chemo is just a 5FU pump change, so that will be easy.

Keeping on keeping on.

Well, I managed to get through this round of cisplatin without vomiting, which is fantastic. All praise to the new anti-nausea drug regime. Now that I am off it, I feel like gagging again more, but so far nothing too bad. I think it was the vomiting that helped cause the throat sores, so I will do my best to avoid it.

I have had 4 radiation treatments so far, which means 26 to go. I haven't felt anything yet, but the damage builds up over time, so I will have to wait and see. Well, with luck not much will happen, except the dramatic shrinking of the tumour, of course.

On the plumbing front, I had a meeting with a surgeon yesterday, and it sounds like we will bump up the tube change earlier to try to combat these ongoing infections I have. Next tube change will be WITH painkillers!

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.