Vappu

I checked in at the hospital yesterday morning just to find out that the platelets count in yesterday's blood sample was still too low to start another round of chemo. The value was now 87 so it's roughly at the same level as one week ago. The nurse consulted the doctor who postponed chemo by yet another week in an attempt to give the body more time to start producing platelets normally.

I asked to see the doctor to hear his analysis of the situation but he had another patient. I didn't want to hang around and wait as I have an appointment with him next Tuesday for the CT scan results, so I left.

This weekend there was the traditional May Day or "Vappu" celebration in Finland. I looked up in Wikipedia and found a page on Walpurgis Night where there's a pretty good description about the Finnish traditions. This is the time of the year when everyone drinks home-made mead ("sima") and eats home-made doughnuts and when students from the technical university take over. You see them wear overalls and white student hats and run around doing various rituals. Though the rituals seem to vary from place to place, a common nominator is that there's a bit of alcohol involved. In Tampere, the dipping of first-year students into the river downtown is a popular show. Another tradition is that everyone that has completed high-school will take their white student hat on and get downtown.

Round 14 delayed

As the CT scan got delayed the doctors said I would continue the usual three weeks chemo cycle. I was supposed to start round 14 yesterday, but a nurse from the hospital called me up and said that the Platelet count in Friday's blood sample was too low to start chemo. Platelets have an important role in stopping bleeding. A normal value is between 150 and 360 and mine was 88. This is a typical side effect of chemotherapy and though my value has usually been on the lower end of the scale it has never dropped below 100. The nurse said the doctor had ordered a one week delay in starting the chemo. Next Monday I'll have to give another blood sample before hopefully getting chemo on Tuesday.

The other blood values were fine from the point of view that I'm a cancer patient. They also took the CEA value which had gone up to 179,8 (it was 108,9 on Feb 22nd). I got a little worried about this as it could indicate that tumours have started growing. The nurse said CEA is always used together with the pictures from the CT scan and that CEA could go up and down for other reasons as well. I'll simply have to wait for another two weeks until the CT is done and pictures are analysed.

In the evening I went orienteering and ended up as number 42 out of 150 on a 4km track. I came out of the woods with a face shining like a red light bulb. Next time I have to force myself to walk not to run through the woods.

Crete

We returned last Sunday from a week's holiday on Crete. It was all in all a very successful trip except for the fact that my wife had to go and see a local doctor immediately after the arrival. It turned out she still had an ear infection. The doctor prescribed her with another round of antibiotics.

The hotel had an excellent outdoor area for kids including big lawns, orange trees and a children's pool. Luckily we had the in-laws with us who helped out a great deal running after our youngest kid. He was just all over the place.

The weather was pretty good except perhaps the day we arrived. There was a chilly wind from the sea and I started regretting I had only packed shorts and t-shirts. Luckily it got warmer the next days.

We rented a car one day and took off into the mountains. There is lots of nice nature on the island and orange trees everywhere it seemed. Our youngest was more interested in using oranges as football instead of eating them. In the evening we left the kids with the in-laws and drove off to the city of Chania. It happened the be the night when Champions League quarter finals were on. There was a TV screen showing football in every single pub and café down town Chania. My wife was kind enough to let me pick an ice-cream bar where they showed Manchester United.

On the medical front very little has happened. I was supposed to have a CT scan on Friday. While waiting at the hospital a nurse came to tell me the CT machine had just broken down. There is another machine at the hospital but it was so fully booked that they had to reschedule me. I got another time two weeks from now.

Genetic testing

I started the 13th treatment round after all on Monday even though I'm on antibiotics. The doctors said it's fine as the infection level (CRP) was low and blood values were otherwise fine.

Some time ago I asked the doctors if they could run some genetic testing on me to try and identify if it is some gene mutation that may have caused my cancer. Though this is a vastly complex area there is already knowledge of some gene mutations that will increase the risk of colon cancer.

On Wednesday I had an appointment with a doctor specialised in the area. She was very knowlegeable about colon/rectal cancer and had also studied my case well. She asked why I wanted to do this. I answered the only reason is to pass on knowledge to my family and especially our kids.

For one hour I was briefed about gene mutations, cancer and ongoing research. I should have brought either my wife or a voice recorder with me as I can't recall it all. She said I could call her any time if I had questions or wanted to know more. I answered it will probably be my wife that would call her.

About gene mutations, some are inherited and some are not. Finland is in front line on research of some of these gene mutations, HNCPP in particular. People diagnosed with HNPCC have a very high risk of developing colon cancer during their life time. The probability I would have HNCPP is less than 20% though.

There is a good system in Finland for follow-up of families in our situation. As an example, she explained our kids would be followed up once they turn 18.

The next step is that she'll order the testing of those two biopsies they have already taken of me (one from a liver tumour and one from the rectal tumour). In addition I had to go and take a blood test they will use for DNA analysis.

Wave of flues

The entire family has been hit by a series of flues and infections for a few weeks. First out was the youngest that we had to take to the doctor. He was diagnosed with an ear infection, in fact the fourth ear infection this winter, third in March! Hopefully the last. Next out was our oldest son who came down with a regular flu. Then my wife and myself got it and it seems determined not to give in easily. On Friday both of us went to see a doctor. The diagnosis was an ear infection for my wife and a sinus infection for me. We are both on antibiotics now.

Tomorrow I'm supposed to start treatment round 13, but the doctors will probably delay it because of the antibiotics. Hopefully they won't delay it too much as we've booked a one week holiday trip to Crete and we are leaving soon.

Winter

We've had a consistently good winter in Tampere since the beginning of the year. That, in my opinion, means that skiing and skating conditions have been excellent. There are tracks for skiing on most of the lakes and woods around here and the city takes care of keeping them in good condition. On Sunday I went for a nine kilometer trip on the closest lake. The sun was shining for a change. The feeling of warmth from the sun made me think of skiing in Norwegian mountains at Easter time. Not that I have done that a lot, but those few times have been fantastic experiences. The dreams of Norwegian mountains slipped away when a woman overtook me. Slightly frustrating and I tried to blame my skis. The real reason is rather my physical condition. I'm otherwise fine but have been a bit sloppy with exercise. It also seems all those cafe visits during the autumn have had an impact and there are now some extra kilos to drag around.

Last week we had our sixth wedding anniversary. It was in the middle of the week so no big celebration. I guess the celebration was already on Saturday when we went to Vantaa Ikea without the kids. On the actual anniversary day I picked up the kids from the daycare and bought a bunch of tulips from the local grocery store. I naturally tried to hide for my wife the fact that I'd put in such little effort in getting her flowers. After the kids went in bed we ordered some takeaway food from a Turkish restaurant close by. While eating we watched Michael Palin's "Around the world in 80 days". At some point I fell asleep.

Going public

I decided to remove the access control to my blog. It is now open to the entire internet. Because of this I edited some of the old blog posts and removed all names and contact details.

Mr. Big

To go straight to the point, the results of last week's CT scan were good. Maybe not as good as I was hoping for, but the doctor said the direction is still right and that's the important thing. The blood values are more or less fine except the CEA value, which is now down to 108,9. It was 228,3 at the end of October and 3482,0 at the end of August so it has actually come down a lot. The initial CEA value you can find in this blog posting. CEA is supposed to be under 5,0 so there's still room for improvement.

Regarding the strategic measures of the tumours in the liver, some of them have shrunk in size while some haven't changed since last scan. In the report there is mention of six tumours while last summer doctors talked about more than ten. Mr. Big, which was previously 7,2cm x 5,0cm is now down to 6,7cm x 4,2cm. That is very good news but it seems Mr. Big may no longer be the biggest. The runner up hasn't changed in size since last scan and is 7,6cm x 3,7cm. The smallest of the six has come down from 11mm in diameter to 6mm. This is almost like following a car race.

We had otherwise the usual discussion with the doctor. About surgery he mentioned the situation in the liver is still too difficult. They would have to cut out too much of the liver as each tumour needs a two centimetres margin around it cut out too. Another problem is that the tumours are not next to each other but spread around. He wasn't very optimistic about ever getting to such a level that surgery would be possible either. We realise he bases his opinion on experience and he may well be right, but we also realise all patients are individuals and we still want to be optimistic.

The doctor said I'll continue the chemotherapy for another three rounds but now without Eloxatin because of the numbness in my toes and fingers. If they'd continue to push Eloxatin the nerves may never heal. The remaining drugs, Avastin and Xeloda, could still do the job though or at least keep the cancer at the same level. There's something positive in leaving out Eloxatin also. It means less side effects. I should not get the chemo-brain and tiredness the first week after injection.

And by the way, about that dog I ran over. I called up the owner a week after the incident. The dog was still alive and it would probably make it.

Laskiainen

Today there's a celebration called Laskiainen in Finland ("fastelaven" in Norwegian). my wife and some of her friends from university times have a tradition of family gathering on this day and we did the same also this year. First we went sledging with the kids and then barbecued sausages on an outdoor grill. I think those sausages taste better in -5 degrees Celsius and snowfall than hot summer weather. Afterwards we went inside to eat pea soup. For the dessert we had the traditional laskiaspulla. Those are buns with whipped cream, marzipan and home-made jam. We have something similar in Norway also and they are called "fastelavensbolle". Delicious.

When writing this, I wondered what the English term for Laskiainen would be and looked it up in a dictionary. Shrove Sunday, Shrove Tuesday, Pancake Day and Mardi gras hit my face. I continued to Wikipedia and found a rather interesting article on Shrove Tuesday. Apparently the traditions around the Christian world are many and very different. This is what Wikipedia says about the Finnish traditions:

"...this day is associated with hopes for the coming year. On this day, families go sledging and eat split pea and ham soup. A toy is made from the ham bone by tying the bone to a string and spinning it around to make a whistling noise. There is a tale told that if you cut your hair on this day, it will grow fast and thick for the next year. Finns also share the tradition of the marzipan and cream filled pastry with Swedes, although often the marzipan is replaced with strawberry jam. Finnish name for it is laskiaispulla. ..."

The bone toy and that hairy tale I've never heard of myself. Here's a funny coincidence. My wife has been telling me for a few weeks that I should go and have my hair cut. For no specific reason, this morning I asked her if she could give it a go with our electrical hair shaver. She's actually a pretty good with that thing. The shorter the better result. So, I got shaved while the kids were observing with a slightly worried expression on their faces. If that tale is true, my wife will get busy with the shaver this year.

Tomorrow morning we're going to the hospital to hear the results of last week's CT scan and blood test (including the CEA value). Some excitement or nervousness is building up. I'll try and put in another post to the blog tomorrow evening.

Tenth round

Today I started the tenth treatment round. I walked into the hospital 0850 this morning with my wife and didn't feel excited at all. I knew there would be a short doctor's appointment as they would only walk through the usual and basic blood values and probably listen to what I'd have to say about side effects. Then they would put me in a bed, stick a needle in my arm and pump bags of medicine into my blood. Sometimes there are some very talkative patients in the beds next to me, sometimes not. I always bring a book with me as backup.

I will reveal a secrete. I realised a long while ago, actually very shortly after I got the diagnosis in July last year, that my wife is at a totally different level concerning knowledge of rectal cancer and standard and experimental treatments. When I try and write a summary of the doctor appointments I tend to get some of the details wrong. My knowledge of the Finnish language could contribute to that also though I think I get it all. So, I asked my wife to become a co-author of this blog and write those parts where doctors have given us information.

The doctor said the blood values were ok and that the reason for meeting the doctor actually was to ask me about the neuropathy, i.e. numbness in finger tips and toes. If it gets worse they will have to consider dropping Eloxatin (oxaliplatin) chemo. She then also said that if the cancer goes more or less into a remission they can also continue with just Avastin as it is not a chemo medication and does not cause cumulative side effects like all chemo does. And then she said the same thing we have heard once before, that if the tumors in liver decrease in size enough they will consider resecting, i.e. cutting off the tumors from the liver. My wife asked if radiofrequency ablation, a promising radiation method, is a standard treatment as well and she said yes. It is supposed to give at least almost as good results as resecting the tumours.

My wife also asked about some more experimental treatments but she said that they are experimental and not done in hospitals in Finland as part of standard treatment at all, and they should anyway only be considered and given as last resort when all other means have been tried, and my situation is nowhere near something like that at the moment. She was maybe not that eager to reply to my wife's questions but it didn't matter as we were glad to hear what she had to say anyway. She said that we shouldn't think that they just keep pumping chemo into me and then sending me home for three weeks again, but that the treatment they give is given because they have a goal, to get the cancer into remission or get my liver in resectable condition. My wife said that we're glad to hear that they have such a goal as we also have a goal and it sounds like it's the same one. She then of course said that there's not guarantee this will happen, but that we already knew, of course. But it was very good to hear that they do have a goal because it has not been really clear to us, especially since originally in the summer I was according to the papers sent to "palliative treatment" which is to relieve symptoms only when there is no hope for cure really.

Today was a reading-book-day. I did close to 200 pages of Beatles, written in 1984 by the Norwegian author Lars Saabye Christensen. It is probably among the best Norwegian novels ever written. Actually, I've read it once before at high-school in late 80s. I could remember nothing of the story before I started it again. It must be the chemo, or?