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.
Saturday, August 30, 2008
Friday, August 29, 2008
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.
Wednesday, August 27, 2008
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.
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.
Monday, August 25, 2008
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.
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.
Tuesday, August 19, 2008
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.
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.
Friday, August 15, 2008
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.
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.
Saturday, August 9, 2008
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.
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.
Tuesday, August 5, 2008
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.
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.
Saturday, August 2, 2008
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.
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.
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