Midsummer

Thank you wife for maintaining the blog in my (mental) absence!

Times have been pretty good since the last stent insertion where they used the ERCP technique. The blood values on Monday were also good so this may be a sustainable solution. I'm getting Vectibix every second week and had my second shot on Monday. The side-effects aren't bad. The main issues are rash in the face and upper-body. In future I can expect nail bed infections and (natural) eyelash extensions.

I've been on sick leave from work since the bile ducts problem started in April. I'll stay off from work throughout the year since the situation with the cancer is uncertain. The next CT scan (August?) will probably tell more what's happening.

I've had the pleasure of spending a lot of time with the kids recently. A week ago we took a day trip to visit Hakkaraisen talo in Vammala (House of Mr. Clutterbuck) and the spa in Ikaalinen. I think this was the first spa visit with the kids ever and they had great fun. The water slide was in particular a popular place and it was difficult to pull them out from there when we decided to leave.

Last weekend we celebrated midsummer (Juhannus) on in-laws summer cottage. The oldest kid fell in love with the tent that we brought along for the fun of it and decided to sleep all three nights there. He had no trouble falling asleep while I stayed awake for most of the night. Luckily, Marjo stepped in for the following two nights so I got to sleep inside the cottage in a proper bed.

In and out and in and out of hospital...

The wife of a lazy husband here again. Well, he hasn't had the easiest of weeks so maybe he's entitled to just lie down on the couch and watch football...

ERCP went well! Hehe, that's the wife perspective I bet. The patient himself said the procedure was awful and it sounded like that was an understatement. If you want to imagine the gory (??) details read more about ERCP here. It also sounded like the doctor managed to scratch his pancreas slightly during the procedure, this did not luckily end up into pancreatitis (which can be hellish or even lethal I understand) but did cause a lot of pain and nausea. So Monday was not a good day for Jan Arne.

But lo and behold, the following day they let out this man, weak but anyway, although 10 hours earlier I had asked the nurse if he would live throughout the night. Well, I must admit that was a bit sarcastic question to a nurse that was not being very friendly to me.

On Wednesday we visited an oncologist, just a regular visit that we have not made in several weeks. The oncologist (a new one, they still have ones we haven't met during these two years!) said Jan Arne's blood values were ok for chemo treatments and they got him an appointment for today (Friday). So in he went today for his first ever dose of Vectibix.

I say chemo but Vectibix is actually an anti-body medicine. We agree with the doctors it makes sense to go with a moderate approach after the difficult six weeks Jan Arne has had, but it does not mean that if all goes well for a few weeks we would not go pestering them about trying with one or another chemo one more time.

Other than that, Jan Arne has been tired after the ERCP but we even ventured a short trip to the local amusement park with the kids yesterday. So all in all, after Monday, a pretty ok week. Jan Arne can give his own perspective when he has energy.

Out and in of hospital

Wife here for a change as the patient himself is so busy. Jan Arne got out of the hospital a bit more than a week ago and has been slowly getting better. He's been tired because of the infection and the antibiotics but now finally the blood values are more or less ok, except a couple of the liver values. He's been well enough to even look after the kids while I have been at work, just regular father-sons action, going out for hamburgers and new water guns (or water bazookas more like). Now they have been visiting the grandparents here in Finland for two days.

The oncologists (cancer doctors) had discussed Jan Arne's case in their meeting last week and the conclusion seems to be that first of all the bile duct stent & drain solution needs to be changed to an internal stent without drain so that the risk of infections would be smaller. When that is done and if all goes well (and no new infections) they will try another treatment with another antibody medicine called Vectibix. It's a similar medicine than Erbitux which Jan Arne has been receiving for a year now, but somehow slightly different and can be used alone without a chemo. The cancer seems to be getting active again so the doctors apparently want to change the medication because they think that the previous treatment no longer works. So not really the best of news this time but let's see how the ERCP (method of installing the stent) goes on Monday and then keep all the thumbs up and fingers crossed or whatever method you want to use for wishing that they can start with Vectibix and that it will work.

Ice cream

The family stopped by the hospital during the weekend and we had some ice cream Marjo picked up from the hospital kiosk. I asked the kids what their favourite ice cream were. The oldest kept a specific twister ice pop (saftis / mehujää) as his. The youngest had strawberry ice cream in a cone (kroneis / tuutti) as his favourite. By the way, it happened to be exactly the one he was eating. It's wonderful to watch your kids eat ice cream. You realize how much technique really is needed if you want to get it done without making a mess.

I've just been allowed to leave the hospital. The infection is on decline and the pipe solution has been working (up until now at least). I'm now waiting for some papers and after that I'm off into the free world. The doctor said there is a department meeting tomorrow afternoon where they'll discuss my case and how to continue treatments. She promised she would call me up on Thursday morning with more information.

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).