Repair

Yesterday (Thursday) before the MRI scan I went to see one of nurses at the hospital to show her my legs. Not that they are good looking in any way, but I noticed in the morning that my left leg was slightly swollen especially around the ankle. It worried me a little. She said she would talk to one of the doctors and that I should drop by after the MRI scan. I had the scan which was a little different than all the other scans I've had. The machine made such noise that I had to wear a radio head set. I got to choose which radio channel to listen to. I picked "957".

After the scan I got to see a doctor who checked my legs and she said I'd have to go to an ultrasound examination to check if a blood clot could be the reason for the swelling. It was already three in the afternoon so I'd have to come back the following morning (today, Friday) and they'd try and fit me in between scheduled patients. Also, if my leg would start to hurt or I'd get problems with breathing during the evening or night I'd have to go to the emergency room, as then the blood clot would possibly have travelled to my lungs which can be life threatening. I was a little uneasy and started wondering if I'm now entering another phase of this disease.

Bad news seldom come alone, isn't that a saying? When leaving the car park the car window on the driver's side broke down. It wouldn't come up and I was forced to drive home with a totally open window in -15 degrees Celsius. Luckily I had a thick winter jacket, hat and gloves on and with the heater on full blast it worked out. It was a little unfortunate though that the window would break down just on this day. Our oldest kid had swimming school and I was already in a hurry to get home to pick the kids up from day care and take him to the swimming hall. Now I wouldn't dare to leave the car anywhere but rather get to a car mechanics' place to have the window fixed. We did it so that Marjo took both kids swimming (even though she had a cold) while I continued to the Nissan car dealer that Marjo had already called. They promised on the phone that someone would be able to look at it.

Well, at the car dealer the people suspected a broken window motor that had to be replaced. Unfortunately, the car repair was so fully booked it could take them over a week to have it fixed. They wanted me to leave the car there for the whole week. Not a good deal at all! Fortunately, a friend of ours working there (well, he actually sold us the car) set us up with another car mechanics' place that could have it fixed today. I jumped on the latter offer and drove off to a super market to wait for the family to finish the swimming. When we finally got home it was six in the evening and -18 degrees.

This morning I tried to cover the car window with some see-through plastic which kind-of worked. We dropped the kids off at day care and were at the hospital at nine. Marjo had to join me in case there was a blood clot in my leg because then I would have to stay at the hospital and she would have to drive the car to the mechanics'. They fit me in the ultrasound before 11 and luckily they did not find any blood clots. The doctor also checked yesterday's MRI and concluded that the swelling is caused by the cancer in the pelvic area lymph nodes which makes the flow of fluids more difficult. There were also a couple of spots where cancer was growing in such places (close to spine) where it can cause back pains, so for the first time during my cancer journey I am now scheduled for radiation treatment next week. Let's hope it will help with the back pains and prevent the swelling from getting worse. The backpains have been quite well under control though for the past few days with the pain killers. I am also not looking forward to the side effects, let's hope they will be on the milder side. The doctor said they are typically diarrhea and nausea but not as bad as with chemo.

After the ultrasound we drove to the car mechanics' place and had a long lunch in a near by restaurant while waiting for them to fix the window. Just in case we will not be opening the window for the rest of the winter though.

So it was a day of pretty ok news: no blood clots and car window working. Oh, and my oldest sister from Oslo came for a visit for the weekend!

Sleepless in Tampere

I had the bi-weekly follow up with the doctor on Friday. All blood values are good except AFOS (one of the liver values) was a bit high at 324. The normal range is 35-105. It has come down a lot since the bile duct operation last month though when it was measured at 649 (on January 2nd). The doctor said this is all good.

The back and hip pains are from time to time still bad and the doctor increased the painkiller dosages. She also prescribed me a new drug used for neuropathic pains and anxiety. It should also make me tired and help with my sleeping problems. They finally managed to schedule the MRI picture and I'll get that done on Thursday this week. Then they'll call me up next week to inform me about the results and see if they could use some radiation treatment on some tumours to ease the pains.

The biggest challenge right now is insomnia. I just can't fall asleep at nights or if I do I wake up shortly afterwards! Very frustrating and something I've never even remotely experienced before. We have discussed this with the doctor several times already. She has prescribed various sleeping pills that I've tried out, but they have unfortunately not helped very much. The back and hip pains could be part of the problem since I sometimes have had to take more pain killers during the night. Maybe the cancer has an impact on some hormone level? We've also discussed if the reason could be mental, in other words thoughts and fear of dying but it's not that either, I'm not going through anything like that at the moment. 

This weekend (Friday and Saturday nights) was exceptionally bad. The increased pain killer dose helped take away the back pains but I still couldn't fall asleep or if I did I would wake up after half an hour. I felt like a walking zombie during daytime especially afternoons and evenings. We did manage to meet up with some friends on Saturday though and that went fine. We placed the kids at grand-parents and had lunch at a restaurant downtown.

Last night (Sunday) I finally got some sleep! I slept for 4,5 hours, then half and hour awake, and then I slept for another 1,5 hours. Today (Monday) I've felt great and even brought and fetched the kids from day care. I haven't done that in a long time. Hopefully my sleeping will continue like this.

The birthday celebration season isn't over after all. The oldest kid came down with a stomach flu on his birthday and we had to postpone the party. Luckily the new time was ok for all, including the magician. Marjo also got the same stomach flu while the youngest guy and I managed to avoid it. Poor kid, he was very anxious the birthday party would get cancelled but we assured him it'll will be fine to tell everyone it is postponed by a week. That means the party is tomorrow but now it seems many of his friends have come down with something and have cancelled. There are quite a few flus going around in schools and day cares these days. Let's see how many will show up.

Birthday celebrations

We are in the birthdays celebration season. Our youngest son turned four yesterday and we arranged a real "friends-only" birthday party for him. Well, I have to admit Marjo and not myself was behind the arrangements. It has been fun time because it has meant a lot to him. He got to decide who to invite himself (they were his daycare friends) and he made birthday invitations and plans weeks ahead. The party went quite fine and they seemed to enjoy themselves. One of the guests refused to leave and Marjo had to carry him out to the entrance to his father who was waiting to pick him up.

Next week the older brother celebrates his birthday and will have his friends over and then we will have a family celebration during the weekend with relatives. There is in other words a bit of birthday cakes to be made and eaten. That may be good also for me and my weight. I am eating much better and have had no nausea for a while. I've been around 69 kg now and hopefully I'll see 70 kg on the scale after all the birthday celebrations are done.

I had a doctor's appointment and blood test done last week (February 1st). The blood values were quite good except the CEA value which had increased to 3200! It was previously measured on December 7th just before the virus treatment at the private clinic in Helsinki (Docrates) and it was then 1700. That is naturally no good news. It probably also means the experimental virus treatment has had no or little effect in slowing down the overall cancer situation. I've decided I will not go for any more virus treatments which is also in line with what my doctor at the local hospital recommends.

The back and hip pains are from time to time quite bad and I've had to increase the painkiller dosage. The doctor is not able to pinpoint exactly where the pain comes from other than it's probably a tumour that is pressing on a nerve somewhere. I'm now being scheduled for an MRI picture. That is a picture they have not taken of me earlier so let's see if it can reveal anything new.

My shape is a bit unpredictable but daytime is still the best part of the day. I've managed some short shopping trips and even had lunch with a friend the other day. Evenings and nights are a bit worse. The insomnia problem is annoying and I sleep very badly even though I take sleeping pills and painkillers.

There is no sign of spring coming to Tampere very soon. The temperature measure showed -20 degrees (Celsius) this morning and we still have snowfall every now and then. The days are luckily getting longer though and right now the sun shines through the snow covered woods. It is really beautiful but I wouldn't mind warm sun, snow melting and spring now.

Family visiting

Again, lots of thanks to my loving wife for taking care of me and the blog. Times have been pretty tough lately but I am definitely doing better now. Appetite is improving though my weight is still under 70 kg and I need to focus on eating as often as I can. At the moment the biggest challenges are insomnia (just can fall asleep at night) and constipation that I'm getting from pain killers and anti-nausea medicine I'm taking. There is a medicine for that as well so at the moment there are lots of various drugs I keep taking. I also tend to get fever and chills during afternoons and evenings but it goes away after a few hours. I've felt quite well during the days though so that's something positive.

Today I grabbed the car and went for a hamburger lunch with a friend. I managed to eat half of it and brought the other half with me home to Marjo. Then I dropped by in some stores and did a little bit of shopping before returning home to rest on the couch.

My parents and my youngest sister visited for a few days this week. We kept the kids home from daycare and had a good time at home talking a lot of Norwegian. It was great to see them all again and equally sad when they left. I was luckily in quite a good shape and able to socialize. Well at least a bit I think.

I do admit I feel grumpier nowadays with all these issues going on for so long so you'll have to excuse me if I don't pick up the phone or return your messages. I still very much appreciate all you support and comforting messages and there's been so many of them.

A bit better

Dang this is turning into my blog soon... I hope Jan Arne will have energy for an update himself soon.

Yesterday we went to see a doc and she prescribed him a bit stronger pain medication, and cortisone to hopefully boost the appetite and give him some energy. The blood values were good, only hemoglobin slightly below normal, even liver values were normal except for "afos" which has been above normal the whole time. Doc said nausea can be caused by chemicals released by the tumours and the tumours in the liver, or general pressure in the stomach area caused by tumours and enlarged liver.

Not sure why but Jan Arne's appetite actually improved a bit yesterday, he even asked me to make a small (onion/tomato/cheese) omelet in the evening. Don't know if that was the reason but I woke up at night and he had really bad hiccups and generally slept really badly. Good luck he has all day to take naps and recover. He is still feeling so bad though that he is not currently considering to go for the second round in Docrates virus treatments, at least while feeling like this.

Not getting better

Just a quick note as I realised we haven't updated the blog since Jan Arne got home from the hospital. We were hoping that replacing the stent would normalise the liver values and he'd start feeling better and the appetite would return, but unfortunately not. It's been pretty much the same, no appetite, nausea, stomach and back pains. If he eats anything bigger than a cookie it doesn't seem to be too interested to stay in... And of course as he does not really eat he does not have much energy. He did take the Christmas tree out on Friday, needles and all. In the evenings we just watch TV, we're hooked on a Norwegian series called Hvaler, and Glee.

We are going to see a doctor on Tuesday, let's see what she thinks of this.

At home

Jan Arne is at home finally! The blood test in the morning showed the infection value was going down so the doctor said he can go home. I was at work so he took a taxi home and I met him when I had picked up the kids from daycare. Jan Arne had even had some energy to clean up a bit (to finish up what I didn't have energy to clean up at weekend...) but he is still tired, some nausea, stomach pains, no appetite, some fever at times... But at least he is at home.

Procedure done

Jan Arne has been feeling pretty well after Tuesday, not that much nausea anymore, nothing in his stomach of course either. But he has been very tired. The liver values in the blood test on Monday were pretty high but other values around normal limits, indicating that either there is a blockage somewhere in the bile ducts or that the tumours in the liver are obstructing the flow of bile in the liver (this is how I understood it).

The ERCP procedure was done this morning. It seems that there was "only" a regular gall stone in the bile duct stent! No blockages or tight spots caused by metastases elsewhere. The stent had also slightly moved, so they removed the stone and replaced the stent. What a relief if that would normalise the liver values and improve his appetite. The cancer is still there of course and we don't know if the virus treatment has affected its rabid advance, but if at least he'd feel better for a while, that's be great news at this point.

Jan Arne is still in hospital, they would have sent him home but he wasn't feeling exactly great after the anaesthetics and all that so I think he will stay at the hospital for the night. He was going to try to eat something today, must be weird after almost a week with no food really. Let's see how he feels tomorrow.

Hospital stay update

Seems they won't do the ERCP until Friday morning!! Jan Arne has to stay in hospital until then -- without food. They don't want him to eat anything in case there is a blockage somewhere, they will check for that in the ERCP. I asked the nurse from the palliative ward to see if there is anything they can do to speed up the ERCP but I guess many of the doctors are still on holidays and Thursday this week is a holiday too...

ARGH!

Hospital for a change

Jan Arne has been feeling quite bad for a couple of days, even less appetite and nauseous on Friday, and since yesterday throwing up. We agreed this morning he'd better go to the hospital for a checkup. I took him to the first aid unit and they said he should stay there and at least get some IV fluids and blood tests done. They told me to go home. Not much space in the hospital I guess...

I have not managed to talk to him much after that (bad reception etc.) but it seems they will at least replace the stent in the bile ducts tomorrow, it may be causing the nausea if the bile ducts are blocked and the liver values are off. The procedure is called ERCP and when they did it last June it was a pretty bad experience for Jan Arne so I told him to demand they'll do it under general anaesthetics. Let's hope they will agree to that and it'll go well, and that it will relieve the nausea. I'd be so happy to see him get his appetite back!

The rest of the day I have been transporting the kids to here and there, friends and friend's birthday party. The younger one is talking a lot about death recently, like "let's go to that good pasta restaurant again, I guess dad won't be able to join because he will be dead". The older one seems to be quite unhappy about the prospect of being a family of three only, it'll be boring to be just three he says. But other than that they are normal energetic happy kids... Let's hope we will be a family of four for quite a while longer.