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!