Back in hospital

Things change fast in my situation. On the very same day as my previous blog post (Thursday a week ago) I had to check in at First Aid. The drain solution seemed not to work as it started leaking liquids in various colors, also some blood. After many investigations during the evening I was sent home again and asked to come back if it got worse. During the night it did really get worse and on Friday morning I had fever and felt lousy. I checked in at First Aid again and this time I was sent to the surgeon who changed the pipes. According to him it is not unusual that the drains get stuck and need to be changed.

I was allowed to leave First Aid around four in the afternoon. Summer waited outside with lovely sun and +25 degrees. I had a pretty good weekend and even managed to go out with a friend on Saturday. We played mini-golf and had something to eat in a restaurant.

Unfortunately, the good times didn't last long. On Wednesday morning the drain started leaking heavily again and wise from experience I went immediately to First Aid. The pipes were changed and this time they increased the dimensions of them. Hopefully bigger pipes will do the trick.

As if all this pipe hassle wasn't enough, I naturally came down with some fever Wednesday evening. When I measured my temperature in the morning (yesterday) the meter showed 40 degrees and there I was off to First Aid again! The doctors spent all day on investigations but didn't really come to any other conclusion than that there may be an internal infection related to the drain change. At eight in the evening they transferred me to the cancer department for monitoring and further treatment. So, I'm back at the same place as I was at the end of April. Room 8 this time.

Sunshine in between

The days since the hospital exit about two weeks ago have been pretty challenging. In general I can't remember I've been this sick since I got the diagnosis in 2008. Though I've had some good times in between, most of the time I've felt crap (nausea, bad appetite, insomnia, itching skin, tiredness). The 10 days long antibiotics treatment (pills) after the hospital was pretty hard and I think that caused some of this but possibly the condition of the liver also plays a role. The liver values in blood samples have been going up and down and we’re not sure if the tube and drain solution they put in works as it should. I'm scheduled for further investigations (ultra sound) on Monday morning, which also happens to be Norway's Independence Day. Maybe I should bring a Norwegian flag with me to the hospital? The doctors won't put me back on chemo either until the liver works properly again.

The CRP (infection level) has come down to almost normal level so some progress in that area at least. The pain from the surgery is also on retreat.

I've felt pretty well after ending the antibiotics, in other words the last two days. After giving a blood sample at the hospital this morning I went downtown for an errand and stopped by in a café for a cup of cappuccino. I haven’t felt like drinking coffee for weeks, but today it tasted really good. Maybe the ice-hockey world championships have also had a positive impact on my recent well-being. Denmark and Norway have had some surprise wins and finally tonight Finland got their play together and beat USA. Tonight's match was a thriller to watch though.

We had otherwise a fantastic warm and sunny day today. The temperature hit 20 degrees (Celsius) and all of a sudden nature has come to live. Maybe an exceptionally long and cold winter will turn into an equally long and warm summer? In the afternoon father-in-law, the kids and I went downtown to buy ice cream at the harbor market place. Marjo is on a business trip all week and in-laws stay at our place to help out.

Checking out from room 12

The CRP (infection level) did come down this morning and was 76,3. The doctor said everything looks good and that I can check out tomorrow (Friday). They'd want to give me IV antibiotics for one more day to see the CRP further down before letting me go home and continue with pills. She also said they'd wait another week before starting chemo again.

That means room 12 is mine for one more night and mine only. Nurse said there will be no other patients unless someone would come in via emergency. I'd be happy to get some proper sleep as my roommate last night was a master snorer. Otherwise a very nice guy but what noice! After I got the last IV at mid-night the nurse gave me ear-plugs and a sleeping pill. In addition I put the headphones I use with my iPod on top. Eventually I fell asleep. In the morning the nurse said we both had been snoring loudly. Naturally I think she was joking.

Marjo and the kids dropped by yesterday which was nice. The kids were excited about the bed that could be adjusted with a remote control. I was thinking of letting them have a go with the control but there were too many nurses around. Next time maybe.

Room 12 - day 3

Another lovely and sunny day in Tampere and another day in room 12. I've got a new roommate today so already third since I arrived on Monday.

The infection level (CRP) had gone up since yesterday and was this morning 92,5. CRP should normally be between 0 and 10 so I'm now clearly out of range. Yesteday the doctor decided to change to better antibiotics and I've been given that three times a day as IV. I didn't ask what "better" in this context means. Is it stronger or better suited for my type of infection or what? I was a little surprised to see the CRP further up but the doctor didn't seem worried. She said it could take two days before the drugs kick in. I expect to see some good results tomorrow then.

The liver markers had improved further which were good news:
* ALAT 80 (10-70 is the normal range)
* AFOS 225 (35-105 is the normal range)
The doctor said it could take a couple of weeks for the liver to recover so these markers may come down slowly.

Alright, this all means I'm not checking out of room 12 today and most likely not tomorrow either. Marjo and the kids will visit this afternoon. I have prepared a little party and bought some fresh buns and juice from the hospital cafeteria.

An update from room 12

Thank you wife for maintaining the blog in my mental and physical absence! I'm now in hospital sharing room 12 with another patient. There isn't a lot happening in room 12 except swapping through the TV channels and some chitchatting with fellow roommate. Luckily, there is a common room with TV and a laptop connected to the internet.

I got an infection after the surgery and I'm getting intravenous antibiotics for it. The CRP (infection marker) was yesterday 49,9 and had gone up to 80,0 this morning. The doctor said there is typically a little delay between start of antibotics and the CRP coming down. The liver markers had come further down this morning so we are on the right track. ALAT was now 118 (283 on 21.4) and AFOS 259 (348 on 21.4). The doctors current belief is that the surgery was successfull and that the infection is the only problem right now. As soon as the infection is cleared they will continue the chemo treatment.

I feel otherwise quite fine but have a bit of stomach pains after the surgery. I get painkillers for it and can manage.

Seems I will have to stay here for at least one more night. Luckily a friend of mine just brought me some football magazines. I've got plenty of time to go through those thoroughly.

Not such an easy weekend

The next step was supposed to be blood test on Monday morning and that is now done, but at the same time I had to leave Jan Arne at the hospital. His stomach has been quite sore at times at the weekend, moving around and especially getting up from or lying down to chair or bed has been painful, and last night he had close to 39 C fever. The fever came down and his temperature was normal this morning at the hospital, but they are still suspecting there may be some infection somewhere or that the stent they installed (so heard at the hospital today that they did indeed put in a stent) may have dislocated itself and now causes pain. At least there seems to be an infection so they have hooked him up with some IV antibiotics now. Liver values have not come down much either so I wonder if it means the stent is not working ok or if they just come down that slowly.

So there he is again, turning into a hospital pro very fast, as in the morning he only took with him his toothbrush and a charger for his Nokia E71... Hospital provides medication, food, clothes, bed and linen, and a TV in the room, so I guess that's all you need. I'm anyway glad he's there as it's easier for them to keep an eye on him and take a look into his stomach if need be (looking for the sailing stent), and their storage of antibiotics is better than mine as well. Let's hope things are ok and he will get his next dose of chemo/antibody soon. Kids will be disappointed he is not here when they get home from daycare but good luck grandma came here to entertain them, and to cook (good luck for me).

Update about husband

A very brief update as I am in the middle of baking pizza and Jan Arne is unavailable = watching a ManU match on his laptop.

I went to get Jan Arne home from the hospital on Friday. The nurse wanted to show me how to flush the drain that is now attached to his bile duct/gall bladder (not sure where it is) but he has in fact done it himself. It didn't get clear to me what they had actually done as the doctor we saw had not done the operation. Nor do I know why the external drain instead of internal stent but a wild guess is that as they don't know the reason for the stricture maybe the drain is a safer solution? It is permanent, at least temporarily :) But the main thing is that the bilirubin levels had gone down already on Friday so the solution seems to be working.

Jan Arne is fine except the site they operated on is quite sore whenever he tries to do anything that requires stomach muscles. So walking or sitting down or getting up from bed or getting down to bed to lie down is not that easy, which is unfortunate as all that is quite a big part of life :) But he's doing ok. Enough to watch football anyway. (soon he will not allow me to write these blog entries).

Next step: blood tests on Monday and a dose of Erbitux on Tuesday if the blood tests allow.

Better news!

And the wife acts as the secretary again as the husband lies in the hospital...

This morning Jan Arne went to the hospital early in the morning for the CT scan. After 10 am I got a phone call, of course just when I was in the shower washing my hair (was not at work as my doctor put me on two days of sick leave as I am pretty much unable to work because of the stress caused by this situation).

Jan Arne had phoned me so I phoned back a while later and Jan Arne handed his phone directly to the doctor (the same one we saw on Tuesday) and she said right away "GOOD NEWS. The CT scan showed the metastases in the liver have actually gotten smaller, and the obstruction in the bile ducts is caused by a stricture". Say what?? For some reason the ultrasound didn't give a very good idea of the state of the liver this time. Haven't seen the scan report so don't know more about it now but we'll fill in the blanks in this blog later on. The CEA (cancer marker) value was up a bit from February but that can well be because of the condition with the bile ducts.

They put Jan Arne directly to a line up for the stenting operation, or so I thought. This is where it gets a bit unclear for me, I thought they'd put in an internal stent (i.e. placed inside the biliary duct as a support structure to keep it open) but Jan Arne phoned me in the evening and said he now has a PTC, a percutaneous biliary drainage (google for it if you wish to know more) which is a permanent or a temporary external drain to drain the bile out of the liver. I'll go to the hospital tomorrow to find out more why this solution. Whatever, if it works, and the husband will return to his usual pinkish colour, I'm happy.

Hopefully Jan Arne will get home tomorrow. He says it is painful to move and especially to walk but I hope it will get better soon. Life after operations, even the smaller ones, tends to be a bit painful unfortunately.

And last but not least, a huge thank you to all of you out there around the world for all the positive thoughts and prayers once again, keep doing what you are doing :)

Unfortunately

It's the wife reporting this time. Today in the afternoon Jan Arne had an appointment to have an ultrasound of the liver at the hospital, to figure out what was the cause of the elevated liver values. I left work in the middle of a meeting when Jan Arne sent me a message that the ultrasound was over and he was waiting for the doctor to give him the "verdict". The news was that something is blocking the bile ducts, and unfortunately considering his medical history and what the ultrasound was showing ("heterogeneous liver tissue") the most likely reason for this is that the metastases (tumours) have started to grow again and are maybe putting some pressure on the bile ducts and the bile can't get out of the liver. I hope I am getting this right, it was hard news to listen to and concentrate to listen to and translating this into English is not a piece of cake either right now.

The doc said the next step is to have the CT scan (Thursday, or is possible to squeeze it in , then tomorrow) and in the scan they will see more clearly the situation with the metastases. The scan is also needed by a doctor who will then hopefully later this week put in a stent to help the bile get out ("biliary stenting" it's called). The stent is needed as otherwise Jan Arne's condition will start to get worse little by little.

When we asked "and then" (if the stent works but the cancer is now growing) the doc said that the chemo route has been exhausted, so that's it, pretty much. They can try some radiation to make the tumours smaller. This sounded really bad as we thought there's some medication left they can try. Hopefully we get to talk to another doctor later this week and hear a "second opinion".

But let's just first wait for the CT scan results and the stenting operation.

We left the doctor's office to go pick up the kids from the daycare via pharmacy where Jan Arne got some medication to e.g. ease the itching caused by his condition.

So unfortunately not good news at all today, but I guess we have been still kind of ok. Or maybe we are in shock. Not quite sure how this works.

Break

The blood test on Monday was good and the platelets count had gone up. I got therefore the full package of chemo (Camptosar, Erbitux and start of Xeloda pills) on Tuesday as planned. However, there is something "unplanned" going on now.

I haven't felt very good for more than a week. I got nauseous, dizzy and tired even though I had not gotten chemo. After the IV on Tuesday I had a couple of rough days when I stayed in bed continuously. My urine also started getting unusually dark at which point Marjo forced me to contact the hospital. Well, she had asked me for a couple of days already when I called up the nurse on Thursday afternoon. I was first advised to drink a lot and monitor the situation. On Friday morning the nurse called me from the hospital and asked me to go in for another blood test right away. A couple of hours later the doctor called me and said my liver values (alat, afos and bilirubin) were higher than normal. She told me to quit Xeloda pills right away and next week's chemo is cancelled. I also have to go in for another blood test tomorrow (Monday) morning. I have a CT scheduled for Thursday and they have moved the doctor's appointment forward from Wednesday the 28th and set it up on Friday 23rd. I assume they'd have the CT analysis ready by then as well.

The weekend went pretty well still greatly helped by in-laws who stepped in to help with the kids. I managed to go for a couple of walks and even watch the Manchester City vs. Manchester United game on Saturday. Great result! However, I guess I can't help being a little worried about the medical situation at the moment but try not to speculate. It can be so many tings, e.g. liver is tired of chemo but can also be something non-cancer related.