We've stopped using alarm clocks. When the kids wake up in the mornings, usually a bit earlier than we'd wish for, they jump into our bed to cosy. This morning, the oldest kid had just curled up when he asked "Is there more than one Santa Claus?". Smart kid, he had been doing some thinking during the night. Marjo took an easy way out and answered that the issue is a bit complicated. We've organised for Santa Claus to visit tomorrow afternoon. He may have to answer tricky questions.
We'll be celebrating a traditional Finnish Christmas at home with Marjo's parents and sister. On Boxing Day we've made it a tradition to cook pork ribs, a Norwegian-style Christmas dinner. The visit at the butcher is always exciting. We need to give very specific instructions how to cut out the piece of meat and not to make it into a Finnish-style ham. It usually works out well.
I have another secret to share. Most of the hair of my body fell off after I started the Camptosar treatment last summer. My eyelashes on the other hand, took off to the other direction and grew wild. Weird stuff. Marjo will do a Christmas eye-lash cut tonight. By the way, the hair on my head has actually slowly grown back and I haven't been bald since autumn.
Merry Christmas!
Wednesday, December 23, 2009
Tuesday, December 15, 2009
Another CT
CT scans start to be a routine. I had another one on Friday and got the feedback from a doctor today. Yet another good scan! Marjo and I were quite relieved. It means we've got some peace of mind for another 2-3 months until the next CT scan. CEA was down from 33,6 (on 24.11.2009) to 30,3. Despite the rather small decrease in CEA some of the tumours had shrunk quite much. We were even talking centimeters with some of them this time. This was a good example why they want to use both CEA and CT when they analyse the situation, one alone is not enough.
The CT report talked about four tumours. It seems Mr. Big is still doing fine and size isn't changing very much, but Number 2 has had a collapse. These were the strategic measurements:
* 6,7 x 4,1 cm (previously 6,6 x 4,3 cm)
* 2,6 x 4,2 cm (previously 3,6 x 6,1 cm)
* 2,1 x 1,9 cm (previously 2,6 x 2,3 cm)
* 1,7 x 2,4 cm (previously 2,0 x 2,4 cm)
After the initial positive message that the direction is still good I was more or less ready to leave the room. The doctor, however, went through some nail, skin and well-being stuff before she let me run. I got a prescription for 1 kg tubes (buckets?) of body lotions as some of the medication makes my skin extremely dry. I've got to put on lotion every day at least once.
Winter has finally arrived. We've had a couple of beautiful days with minus 15 degrees, some snow and clear sky. I'm back at hospital tomorrow (Wednesday) to continue the weekly treatments. Afterwards I may shoot some winter photos and go and buy a Christmas present for Marjo.
The CT report talked about four tumours. It seems Mr. Big is still doing fine and size isn't changing very much, but Number 2 has had a collapse. These were the strategic measurements:
* 6,7 x 4,1 cm (previously 6,6 x 4,3 cm)
* 2,6 x 4,2 cm (previously 3,6 x 6,1 cm)
* 2,1 x 1,9 cm (previously 2,6 x 2,3 cm)
* 1,7 x 2,4 cm (previously 2,0 x 2,4 cm)
After the initial positive message that the direction is still good I was more or less ready to leave the room. The doctor, however, went through some nail, skin and well-being stuff before she let me run. I got a prescription for 1 kg tubes (buckets?) of body lotions as some of the medication makes my skin extremely dry. I've got to put on lotion every day at least once.
Winter has finally arrived. We've had a couple of beautiful days with minus 15 degrees, some snow and clear sky. I'm back at hospital tomorrow (Wednesday) to continue the weekly treatments. Afterwards I may shoot some winter photos and go and buy a Christmas present for Marjo.
Wednesday, November 25, 2009
Another day at cancer ward
We had another doctor's appointment today. We discussed a few well-being issues, like nail-bed infections. That has been a continuous problem since summer. The infections don't heal very easily and I've been on two antibiotics treatments this autumn for it. The doctor was not in favor of putting me on a third round so we'll try some other tricks first. For example, every day I've got to stick my toes and fingers in a blue disinfectant liquid, which makes them brown. Our oldest kid thought my brown nails looked cool and wanted the same.
The blood values are more or less fine. The platelets count has been consistently on or slightly above the magic value of 100. Well, three weeks ago it was 99 but they still decided to give me chemo. The CEA had gone slightly up to 33,6 (all time low is 29,8 measured on 3.11.2009). The doctor didn't consider it alarming. There was a note from the lab that the measurement technique had changed. CEA can also be influenced by other factors. The next CT is now scheduled for Friday 11.12.
I have a confession to make. Every Wednesday YLE, the Finnish TV broadcasting company, sends Niklas Mat just when I'm in bed at hospital and hooked up to the IV. The shows are last years re-runs from Swedish TV. It's actually a really good cooking show and much of the stuff is so simple that even I can get going. And video learning works! Tonight I made an American apple-pecan pie with the youngest kid. He loved the cake dough. The cake eating we'll do tomorrow with in-laws.
The blood values are more or less fine. The platelets count has been consistently on or slightly above the magic value of 100. Well, three weeks ago it was 99 but they still decided to give me chemo. The CEA had gone slightly up to 33,6 (all time low is 29,8 measured on 3.11.2009). The doctor didn't consider it alarming. There was a note from the lab that the measurement technique had changed. CEA can also be influenced by other factors. The next CT is now scheduled for Friday 11.12.
I have a confession to make. Every Wednesday YLE, the Finnish TV broadcasting company, sends Niklas Mat just when I'm in bed at hospital and hooked up to the IV. The shows are last years re-runs from Swedish TV. It's actually a really good cooking show and much of the stuff is so simple that even I can get going. And video learning works! Tonight I made an American apple-pecan pie with the youngest kid. He loved the cake dough. The cake eating we'll do tomorrow with in-laws.
Tuesday, November 17, 2009
Green and reds
Two weeks ago a friend and myself travelled to Manchester to see the world's best football team play. Manchester United that is.
Friday
We had to wait a few hours in Stockholm for the connecting flight to Manchester. Instead of hanging out at the airport we jumped in a taxi to the old city (Gamla Stan). A colleague we met on the plane from Tampere joined in as he had to wait for his connecting flight as well. While Tampere was cold and below freezing point, Stockholm was pretty warm. We had lunch and walked around a little before heading back to the airport.
As soon as hotel check-in was done in Manchester we headed off to MEN Arena and concert with Green Day. I thought beforehand that punk rock isn't my genre of music, but I've got to say this was maybe the best concert I've ever been to. Those guys were true entertainers with a great sense of humour.
Saturday
After stuffing ourselves with bacon, eggs, hash browns, Yorkshire pudding and what-ever belongs to the English breakfast, we spent the morning hours walking around downtown Manchester. It isn't a very pretty city all in all, but the restaurants and stores are really good. And it has an amazing football club. We sat down in The Old Wellington Inn, a pub over 450 years old. 
There were some other Norwegian football tourists there as well. They told us to go as early as possible to Old Trafford if we were to buy shirts to avoid line-ups. We ran straight off to the train and arrived at Old Trafford some five hours before kick-off.
I bought a home shirt with 11 Giggs on the back and the 1999 Champions League final shirt (where Solskjær scored the winner). The shopping bag got pretty full as I naturally had to buy stuff for the family and in-laws as well. The credit card bill was exciting reading!
After successfull shopping we spent the next hours in a nearby pub. Soon after we arrived the pub filled up with Man United supporters and the chants started rolling. The atmosphere was electric. Those guys sing for hours straight, quite impressive. Ole Gunnar wasn't forgotten either. "You are my Solskjaer, my Ole Solskjaer, you make me happy, when skies are grey, ..."
An hour before kick-off we headed towards the "500 Club lounge" at the stadium and had dinner while reading through the match-day program. The facilities were superb and access to and from the stands was fast and easy. 75000 people watched as the teams entered the pitch to the sound of....
Glory glory Man United,
Glory glory Man United,
Glory glory Man United,
As the reds go marching up up up!
Unfortunately, Giggs was injured and not in the squad but Man United won 2-0 still. Berbatov and Rooney scored two beautiful goals and Morten Gamst Pedersen came onto the pitch for Blackburn during second half.
Sunday
Sunday morning we decided to visit Liverpool, only a short train ride from Manchester. Or so we thought. The train was delayed so we got to explore Victoria station for a while longer. Once in Liverpool we visited the Beatles museum, walked around the harbour and had lunch in The Pumphouse. Nice place. We then took train straight to Manchester airport and were soon off to Finland. Or so we thought. In Stockholm and while waiting in the bus that would take us to the plane, we were told the flight had been cancelled. Some of the crew members had gone sick and there was no backup. We were rebooked to the Monday morning flight and had to stay overnight at Arlanda.
That was a great weekend and I hope to be able to do it again some time!
Friday
We had to wait a few hours in Stockholm for the connecting flight to Manchester. Instead of hanging out at the airport we jumped in a taxi to the old city (Gamla Stan). A colleague we met on the plane from Tampere joined in as he had to wait for his connecting flight as well. While Tampere was cold and below freezing point, Stockholm was pretty warm. We had lunch and walked around a little before heading back to the airport.
As soon as hotel check-in was done in Manchester we headed off to MEN Arena and concert with Green Day. I thought beforehand that punk rock isn't my genre of music, but I've got to say this was maybe the best concert I've ever been to. Those guys were true entertainers with a great sense of humour.
Saturday
After stuffing ourselves with bacon, eggs, hash browns, Yorkshire pudding and what-ever belongs to the English breakfast, we spent the morning hours walking around downtown Manchester. It isn't a very pretty city all in all, but the restaurants and stores are really good. And it has an amazing football club. We sat down in The Old Wellington Inn, a pub over 450 years old. 
There were some other Norwegian football tourists there as well. They told us to go as early as possible to Old Trafford if we were to buy shirts to avoid line-ups. We ran straight off to the train and arrived at Old Trafford some five hours before kick-off. I bought a home shirt with 11 Giggs on the back and the 1999 Champions League final shirt (where Solskjær scored the winner). The shopping bag got pretty full as I naturally had to buy stuff for the family and in-laws as well. The credit card bill was exciting reading!
After successfull shopping we spent the next hours in a nearby pub. Soon after we arrived the pub filled up with Man United supporters and the chants started rolling. The atmosphere was electric. Those guys sing for hours straight, quite impressive. Ole Gunnar wasn't forgotten either. "You are my Solskjaer, my Ole Solskjaer, you make me happy, when skies are grey, ..."
An hour before kick-off we headed towards the "500 Club lounge" at the stadium and had dinner while reading through the match-day program. The facilities were superb and access to and from the stands was fast and easy. 75000 people watched as the teams entered the pitch to the sound of.... Glory glory Man United,
Glory glory Man United,
Glory glory Man United,
As the reds go marching up up up!
Unfortunately, Giggs was injured and not in the squad but Man United won 2-0 still. Berbatov and Rooney scored two beautiful goals and Morten Gamst Pedersen came onto the pitch for Blackburn during second half.
Sunday
Sunday morning we decided to visit Liverpool, only a short train ride from Manchester. Or so we thought. The train was delayed so we got to explore Victoria station for a while longer. Once in Liverpool we visited the Beatles museum, walked around the harbour and had lunch in The Pumphouse. Nice place. We then took train straight to Manchester airport and were soon off to Finland. Or so we thought. In Stockholm and while waiting in the bus that would take us to the plane, we were told the flight had been cancelled. Some of the crew members had gone sick and there was no backup. We were rebooked to the Monday morning flight and had to stay overnight at Arlanda.
That was a great weekend and I hope to be able to do it again some time!
Wednesday, October 28, 2009
Sicko
We dug into our DVD collection the other weekend and found Sicko by Michael Moore. I've read a couple of his books and seen several of his films. I doubt his films really classify as documentaries, but they are great entertainment.
In Sicko he puts his finger on the American health care system and the role of the insurance companies in particular. The funniest scene is probably where he first shows clips from American TV on how good health care the prisoners in Guantanamo Bay get. Then he fills up three boats with 9/11 rescue workers who have been denied sufficient health care by the insurance companies and don't get treated in the US and heads towards Cuba. Outside Guantanamo Bay he picks up a megaphone and shouts out loud that he has sick 9/11 rescue workers on board and requests the same health care as the al Qaeda prisoners. Nothing more, just the same treatment! Hilarious!
Private health care is a growing field also in Finland, and we discussed if that is a threat to the quality of public health care services. At least I have very positive experiences with Finnish public health care during my cancer treatment. But have to admit that we use the private sector often when our kids are sick, mainly because we get to see a doctor on pretty short notice and we have an insurance for our kids. We have noticed that many of our friends don't even bother to contact the public health care any more but take their kids directly to the private side as you don't have to line up so long. Many companies have hired private health care companies for their employees. You can now also get cancer treatment in private hospitals in Finland, if you have the money. Is this a worrying trend? Will the best doctors end up on the private side?
In Sicko he puts his finger on the American health care system and the role of the insurance companies in particular. The funniest scene is probably where he first shows clips from American TV on how good health care the prisoners in Guantanamo Bay get. Then he fills up three boats with 9/11 rescue workers who have been denied sufficient health care by the insurance companies and don't get treated in the US and heads towards Cuba. Outside Guantanamo Bay he picks up a megaphone and shouts out loud that he has sick 9/11 rescue workers on board and requests the same health care as the al Qaeda prisoners. Nothing more, just the same treatment! Hilarious!
Private health care is a growing field also in Finland, and we discussed if that is a threat to the quality of public health care services. At least I have very positive experiences with Finnish public health care during my cancer treatment. But have to admit that we use the private sector often when our kids are sick, mainly because we get to see a doctor on pretty short notice and we have an insurance for our kids. We have noticed that many of our friends don't even bother to contact the public health care any more but take their kids directly to the private side as you don't have to line up so long. Many companies have hired private health care companies for their employees. You can now also get cancer treatment in private hospitals in Finland, if you have the money. Is this a worrying trend? Will the best doctors end up on the private side?
Wednesday, October 7, 2009
Good scan
Today I got the feedback from Friday's CT scan. Marjo and I saw yet another doctor we haven't met before. When she eventually came by to call us in one hour late (!) I immediately calmed down a little as I knew she's not one of the senior doctors at the cancer ward. I figured they'd set me up with a less experienced doctor only if the treatment plan would continue unchanged. In other words, I expected to hear good news.
And good news came. CEA had come down from 40,6 on August 18th to 30,2. This is an all time low and I've come a long way since June last year when the CEA value was 6257,1. Even though 30,2 is low (for me) it still means there is active cancer cells and that there is no other target than zero. The CT analysis also stated there were no new tumours and that the existing tumours had shrunk in size. We're only talking about a change of a few millimeters but that we also expected. All in all, yet another good scan and they'll continue the current treatment plan (Camptosar + Erbitux + Xeloda). This means I'll have to continue to visit the hospital every Wednesday for another three months or so before next CT scan.
I requested a one week break from the treatment plan. The doctor said she would consult "my" senior doctor to check his opinion, but probably it would be fine. The thing is, I'm off to see Manchester United versus Blackburn at Old Trafford in Manchester on Saturday October 31st. I'm lucky to have friends sharing the same passion for ManUnited. In the past we've been bravely talking about going to see the best team in the world "some time". A few weeks back a friend of mine told me we're going and organised flights, hotel and tickets. Thanks JP! Now, what if I would contact Ole Gunnar Solskjær and ask him to join us or sit down for a coffee and exchange ideas how good football should be played? Well, maybe not.
By the way, Marjo is slightly disappointed as she would have liked to join. Maybe we'll go and see the second best team in the world together? I had Barcelona in mind.
And good news came. CEA had come down from 40,6 on August 18th to 30,2. This is an all time low and I've come a long way since June last year when the CEA value was 6257,1. Even though 30,2 is low (for me) it still means there is active cancer cells and that there is no other target than zero. The CT analysis also stated there were no new tumours and that the existing tumours had shrunk in size. We're only talking about a change of a few millimeters but that we also expected. All in all, yet another good scan and they'll continue the current treatment plan (Camptosar + Erbitux + Xeloda). This means I'll have to continue to visit the hospital every Wednesday for another three months or so before next CT scan.
I requested a one week break from the treatment plan. The doctor said she would consult "my" senior doctor to check his opinion, but probably it would be fine. The thing is, I'm off to see Manchester United versus Blackburn at Old Trafford in Manchester on Saturday October 31st. I'm lucky to have friends sharing the same passion for ManUnited. In the past we've been bravely talking about going to see the best team in the world "some time". A few weeks back a friend of mine told me we're going and organised flights, hotel and tickets. Thanks JP! Now, what if I would contact Ole Gunnar Solskjær and ask him to join us or sit down for a coffee and exchange ideas how good football should be played? Well, maybe not.
By the way, Marjo is slightly disappointed as she would have liked to join. Maybe we'll go and see the second best team in the world together? I had Barcelona in mind.
Tuesday, September 29, 2009
Women
Finland hosted Uefa Women's Euro football tournament during the first weeks of September. Several matches were played in Tampere and I ended up seeing Germany-Norway, Netherlands-France (quarter-finals) and England-Netherlands (semi-finals). In the latter two matches we were surrounded by Dutch fans, mainly family members of the players I suspect. They were pretty good supporters and put up a good show on the stands. Some had made an effort dressing up.
On the cancer front, nothing much has really happened during September. My blood values have been good and platelets have stayed above the limit of 100. I've therefore received the weekly planned dozes of drugs. I'm in for my next CT scan on Friday this week.
On the cancer front, nothing much has really happened during September. My blood values have been good and platelets have stayed above the limit of 100. I've therefore received the weekly planned dozes of drugs. I'm in for my next CT scan on Friday this week.
Wednesday, August 26, 2009
Norway
CEA was down to 40,6 last week, which was a very positive surprise as I've had to skip some of the medicine (Camptosar in particular) several times. The platelets count keep jumping up and down around 100 and is the main challenge. I'm taking blood tests the day before I'm going to the hospital for a refill. Yesterday a nurse from the cancer ward called me up and said the platelets count was 92 and I would possibly only get Erbitux and not the other cytostats. She asked me to take another blood test this morning when I arrived at the hospital. Surprise, the count had climbed to 101 so I got the full package after all.
As Marjo said in the previous post, we visited Norway during the last week of our holidays. This time we were a bit mean and told hardly anyone that we would come as we wanted to reduce the stress level as much as possible. Apologies to all those we didn't contact during our stay. This picture above is by the way from our previous visit autumn 2008.
We spent some days on my parents' farm and the kids drove a lot of tractor. My father had now two tractors which worked out pretty well. Our youngest kid liked the older tractor better while our oldest kid enjoyed the latest technology of a quite new tractor. Luckily we had a lot of drivers available as two of my sisters were also visiting.
We visited Bergen and stayed with my sister and her husband. We love the local fish cakes at Madam Bergen. Definitely worth trying for non-Norwegians and they also have delicious fish soups. The picture above is from the aquarium which is a popular place to bring kids.
As Marjo said in the previous post, we visited Norway during the last week of our holidays. This time we were a bit mean and told hardly anyone that we would come as we wanted to reduce the stress level as much as possible. Apologies to all those we didn't contact during our stay. This picture above is by the way from our previous visit autumn 2008.
We spent some days on my parents' farm and the kids drove a lot of tractor. My father had now two tractors which worked out pretty well. Our youngest kid liked the older tractor better while our oldest kid enjoyed the latest technology of a quite new tractor. Luckily we had a lot of drivers available as two of my sisters were also visiting.
We visited Bergen and stayed with my sister and her husband. We love the local fish cakes at Madam Bergen. Definitely worth trying for non-Norwegians and they also have delicious fish soups. The picture above is from the aquarium which is a popular place to bring kids.
Tuesday, August 18, 2009
Thanking the Beat It initiative!
The wife here again.
I have been thinking for a long time now that I don't think we have ever really reported to everyone who took part in the Beat It initiative what happened? If you have been reading the blog you probably noticed we went to Crete in April, that's what happened! It was a very good holiday and the kids still want to watch videos from Crete and they remember the pool and the restaurants we went to, and every once in a while they start asking when we will be going there again... So thank you everyone!! It was a very welcome week of "something different" that we probably would not have done otherwise, and it was a good time to go as now it is more difficult to travel as Jan Arne is in treatment once a week.
On other fronts, we just came back from a week in Norway. Jan Arne had his treatment cancelled from last week so that we could travel, and we got lucky as Finnair just had an offer to Bergen. Now we are back to work and kids are in daycare. Jan Arne is on antibiotics as his nail bed infection got really bad so he went to see a doctor practically straight from the airport when we arrived. Tomorrow is supposed to be a new day for chemo but we have to see first how his platelet count is. It was still low on Friday, I guess due to two successive Camptosar treatments (the second time only since May when they have been able to give it two weeks in a row).
I have been thinking for a long time now that I don't think we have ever really reported to everyone who took part in the Beat It initiative what happened? If you have been reading the blog you probably noticed we went to Crete in April, that's what happened! It was a very good holiday and the kids still want to watch videos from Crete and they remember the pool and the restaurants we went to, and every once in a while they start asking when we will be going there again... So thank you everyone!! It was a very welcome week of "something different" that we probably would not have done otherwise, and it was a good time to go as now it is more difficult to travel as Jan Arne is in treatment once a week.
On other fronts, we just came back from a week in Norway. Jan Arne had his treatment cancelled from last week so that we could travel, and we got lucky as Finnair just had an offer to Bergen. Now we are back to work and kids are in daycare. Jan Arne is on antibiotics as his nail bed infection got really bad so he went to see a doctor practically straight from the airport when we arrived. Tomorrow is supposed to be a new day for chemo but we have to see first how his platelet count is. It was still low on Friday, I guess due to two successive Camptosar treatments (the second time only since May when they have been able to give it two weeks in a row).
Saturday, July 25, 2009
CT scan and CEA test results
That cancer patient I also call my husband is a bit lazy again, asked me to report the good news! So here's a brief recap of last Thursday.
Week 29 Jan Arne had the CT scan and last Wednesday the CEA (cancer marker) test. On Thursday we were to see the doc about the results. We were two minutes late as usual. The doc was at the nurse's office (probably asking where we were) and when we passed the office the nurse yelled to us to the corridor right away "good news!" and smiled.
It was a new doc again, and older cancer specialist this time, always nice to hear new insights into things. The CT report was not very good this time, I mean it was not well written, but the main thing was that the news were good. According to the report there were no longer any metastases to be seen on the left lobe (one 1 cm one in May). The report also said that the changes in the right lobe were not significant, and there were measurements only for Mr Big (the biggest tumour). It has shrunk by a couple of millimeters.
But together with the CEA value which was now 65 (in Feb 108, in May 178) even the "insignificant decrease" was good news, the new chemo regime is working. This doc wants to take the CEA every three weeks now. He said that it is in a way more accurate than the CT scan. I didn't ask but I guess because the tumours don't necessarily shrink as fast as they are dying so you can't really see in CT which parts of the tumours are necrotic = dead cells and which are active cancer tissue.
We were planning to go to Norway week 33 and we asked if the treatment that week could be postponed a few days, but now JA is not actually sure if he wants to travel because of the swine flu... so let's see.
Week 29 Jan Arne had the CT scan and last Wednesday the CEA (cancer marker) test. On Thursday we were to see the doc about the results. We were two minutes late as usual. The doc was at the nurse's office (probably asking where we were) and when we passed the office the nurse yelled to us to the corridor right away "good news!" and smiled.
It was a new doc again, and older cancer specialist this time, always nice to hear new insights into things. The CT report was not very good this time, I mean it was not well written, but the main thing was that the news were good. According to the report there were no longer any metastases to be seen on the left lobe (one 1 cm one in May). The report also said that the changes in the right lobe were not significant, and there were measurements only for Mr Big (the biggest tumour). It has shrunk by a couple of millimeters.
But together with the CEA value which was now 65 (in Feb 108, in May 178) even the "insignificant decrease" was good news, the new chemo regime is working. This doc wants to take the CEA every three weeks now. He said that it is in a way more accurate than the CT scan. I didn't ask but I guess because the tumours don't necessarily shrink as fast as they are dying so you can't really see in CT which parts of the tumours are necrotic = dead cells and which are active cancer tissue.
We were planning to go to Norway week 33 and we asked if the treatment that week could be postponed a few days, but now JA is not actually sure if he wants to travel because of the swine flu... so let's see.
Tuesday, July 21, 2009
Renovations done
Thank you wife for keeping up this blog during my absence!
Good news! The kids room is now done with walls and ceiling painted, new floor, all lists renewed and a new IKEA closet assembled. If there will be another renovation project in future, we're definitely going to get some carpenters in.
I was a little unlucky and had to go on a sick-leave in between. I came down with fever and a throat infection just as we had put the kids to grand-parents to free up some time for the renovation. I had to check in at the hospital but the doctor sent me back home after a check-up and blood test. I spent the weekend watching Seinfeld on DVD while waiting for the fever to pass. After the weekend I visited a doctor again and she said I now had developed pneumonia. I just finished the antibiotics and feel otherwise fine.
And something not related to diseases. A friend of mine took me rowing on one of the lakes earlier this summer. While coming back we enjoyed a spectacular sunset as you can see in the attached photo.
Good news! The kids room is now done with walls and ceiling painted, new floor, all lists renewed and a new IKEA closet assembled. If there will be another renovation project in future, we're definitely going to get some carpenters in.
I was a little unlucky and had to go on a sick-leave in between. I came down with fever and a throat infection just as we had put the kids to grand-parents to free up some time for the renovation. I had to check in at the hospital but the doctor sent me back home after a check-up and blood test. I spent the weekend watching Seinfeld on DVD while waiting for the fever to pass. After the weekend I visited a doctor again and she said I now had developed pneumonia. I just finished the antibiotics and feel otherwise fine.
And something not related to diseases. A friend of mine took me rowing on one of the lakes earlier this summer. While coming back we enjoyed a spectacular sunset as you can see in the attached photo.
Thursday, July 9, 2009
Two hospital visits
Last week on Thursday Jan Arne's platelets were back over 100 and he received Camptosar and Erbitux and started two weeks of Xeloda.
At weekend we went to my parents' place and from there we drove to visit a friend's family who moved away from Tampere last year. They have almost same age kids as we do so us parents could just relax while kids were playing nicely by themselves. In theory.
After the visit we drove back to Tampere with Jan Arne and left the kids with my parents. The plan was to renovate their room while they are gone. Well, things don't always go as planned. The room was of course a lot more work than we thought even though we thought we were being realistic. The walls are still waiting for the first coat of paint and the old floor is there, new floor still in packages. I was supposed to go to my parents tomorrow while Jan Arne would finish the room, or as much as he would have energy for, as today was the chemo day again.
But the platelets were back under 100 again so they dropped Camptosar and gave only Erbitux, but told him to continue with Xeloda. Nice for him (less side effects, more energy for renovation) and for cancer (less poison). Except now he is back in hospital with some fever (anything above 38,5C and he has to go to hospital and he had 38,8C) and sore throat.
So I guess this is it for the blog today and off to do some painting.
(My pet peeve for today: why is it impossible to hire anyone to do the painting and the floor in this supposedly-recession-time?? I thought renovation guys didn't have enough of work. Somehow we didn't get anyone to be interested in coming here to do the room for us until August).
At weekend we went to my parents' place and from there we drove to visit a friend's family who moved away from Tampere last year. They have almost same age kids as we do so us parents could just relax while kids were playing nicely by themselves. In theory.
After the visit we drove back to Tampere with Jan Arne and left the kids with my parents. The plan was to renovate their room while they are gone. Well, things don't always go as planned. The room was of course a lot more work than we thought even though we thought we were being realistic. The walls are still waiting for the first coat of paint and the old floor is there, new floor still in packages. I was supposed to go to my parents tomorrow while Jan Arne would finish the room, or as much as he would have energy for, as today was the chemo day again.
But the platelets were back under 100 again so they dropped Camptosar and gave only Erbitux, but told him to continue with Xeloda. Nice for him (less side effects, more energy for renovation) and for cancer (less poison). Except now he is back in hospital with some fever (anything above 38,5C and he has to go to hospital and he had 38,8C) and sore throat.
So I guess this is it for the blog today and off to do some painting.
(My pet peeve for today: why is it impossible to hire anyone to do the painting and the floor in this supposedly-recession-time?? I thought renovation guys didn't have enough of work. Somehow we didn't get anyone to be interested in coming here to do the room for us until August).
Wednesday, June 24, 2009
Update II
Can't think of a good title this time. Just a brief update from the wife again.
So we figured out the treatments are supposed to run like this: camptosar and erbitux for two weeks, then erbitux alone the third week, and then back to both campto and erbitux. Xeloda always starts for two weeks (as pills) when camptosar starts.
And as soon as we had figured this out, Jan Arne's platelets dived again last week, and he only got erbitux and had to cut xeloda short too, only took it for a week.
Tomorrow (Wednesday) there's another blood test and on Thursday, we are again clueless if it will be campto as well if the platelets are back up, or only erbitux. And who knows about xeloda.
On the positive side, the nausea and stomach cramps caused by camptosar are now under control with medication so hooray for that, in case he gets campto this week.
Then again, the summer is finally here, http://www.fmi.fi/saa/paikalli.html?kunta=Tampere, as I read it now it says "25, 26, 28, 28, 28" for the next five days. So we'll just try to keep cool until Thursday in many ways.
Otherwise Jan Arne is doing fine, he went for a long bike ride today etc. His hair has started to come off finally, but then again that does not really influence his ability to cycle... By the way, I guess we have forgotten to share that we got some results that Jan Arne's cancer is not hereditary (HNPCC). Which reminds me we had Jan Arne's sister here for over a week and we had a great time, despite the lousy weather!
If someone is interested in reading some cancer news here's a pretty interesting bit:
http://www.cancercompass.com/cancer-news/1,15813,00.htm
Jan Arne, next time it is your turn to write!
So we figured out the treatments are supposed to run like this: camptosar and erbitux for two weeks, then erbitux alone the third week, and then back to both campto and erbitux. Xeloda always starts for two weeks (as pills) when camptosar starts.
And as soon as we had figured this out, Jan Arne's platelets dived again last week, and he only got erbitux and had to cut xeloda short too, only took it for a week.
Tomorrow (Wednesday) there's another blood test and on Thursday, we are again clueless if it will be campto as well if the platelets are back up, or only erbitux. And who knows about xeloda.
On the positive side, the nausea and stomach cramps caused by camptosar are now under control with medication so hooray for that, in case he gets campto this week.
Then again, the summer is finally here, http://www.fmi.fi/saa/paikalli.html?kunta=Tampere, as I read it now it says "25, 26, 28, 28, 28" for the next five days. So we'll just try to keep cool until Thursday in many ways.
Otherwise Jan Arne is doing fine, he went for a long bike ride today etc. His hair has started to come off finally, but then again that does not really influence his ability to cycle... By the way, I guess we have forgotten to share that we got some results that Jan Arne's cancer is not hereditary (HNPCC). Which reminds me we had Jan Arne's sister here for over a week and we had a great time, despite the lousy weather!
If someone is interested in reading some cancer news here's a pretty interesting bit:
http://www.cancercompass.com/cancer-news/1,15813,00.htm
Jan Arne, next time it is your turn to write!
Thursday, June 11, 2009
Update
It seems the Wife has taken over here! Jan Arne is ok but busy with work as it is the last week before his summer holiday.
Last week, contrary to what we thought, Jan Arne did not get Camptosar, only Erbitux. As he finished Xeloda the same day, it has been a bit easier week for him, and the appetite is back too. Interestingly enough as well, the platelet count keeps rising. Other blood test results have been ok too, only leucocytes had dropped a bit below the normal margins, and infection values were up a bit. The Erbitux rash is still there, oddly traveling from one body part to another (from face, neck, shoulders, to arms, to chest etc.). Medicine and biology sure work in mysterious ways. Other than that, business as usual.
Tomorrow (Thursday) is the day for the doctor again, and for probably starting another round with all of the three medicines. Guess we have to ask in more detail about the planned schedule :)
And on other fronts, on Friday we will get a visitor from Norway and on Sunday a visitor from Austria and from Monday both Jan Arne and I will be on holidays! Sounds like a plan :)
Last week, contrary to what we thought, Jan Arne did not get Camptosar, only Erbitux. As he finished Xeloda the same day, it has been a bit easier week for him, and the appetite is back too. Interestingly enough as well, the platelet count keeps rising. Other blood test results have been ok too, only leucocytes had dropped a bit below the normal margins, and infection values were up a bit. The Erbitux rash is still there, oddly traveling from one body part to another (from face, neck, shoulders, to arms, to chest etc.). Medicine and biology sure work in mysterious ways. Other than that, business as usual.
Tomorrow (Thursday) is the day for the doctor again, and for probably starting another round with all of the three medicines. Guess we have to ask in more detail about the planned schedule :)
And on other fronts, on Friday we will get a visitor from Norway and on Sunday a visitor from Austria and from Monday both Jan Arne and I will be on holidays! Sounds like a plan :)
Monday, June 1, 2009
Rash and other fun stuff
Jan Arne has not apparently had time (or energy) to send an update, so the wife here again, in case someone out there is wondering how he is doing.
Jan Arne has now had two treatments with the new combo, third tomorrow. They give Erbitux and Camptosar every Tuesday, and Xeloda Jan Arne eats twice a day for two weeks. The side effects came almost immediately after the first dose. Nothing huge, but these poisons are obviously not as much fun as the earlier ones. The rash on face and scalp is quite bad, but not as bad as I thought it could be. For Jan Arne of course it is annoying, as it can be quite itchy. He has not really had nausea or diarrhea but he's not been 100% either, not eating as well as before. And he's been quite tired. All in all, I bet life without chemo would be nicer.
On the positive side, the rash is supposed to be an indication that Erbitux is working. Also, in the blood test last week, a week after the first dose, the platelet count had gone up to 118. So if the doc was right and it is the tumours that kept the value low, a higher platelet count sounds good, maybe it indicates that the new combo is kicking the tumours' butt.
News from other fronts: Yes Norway won the Eurovision Song Contest, and Yes I voted for Norway too, and Summer is in Finland: 29C yesterday and 10C predicted for Thursday, what can be more Finnish than that.
Jan Arne has now had two treatments with the new combo, third tomorrow. They give Erbitux and Camptosar every Tuesday, and Xeloda Jan Arne eats twice a day for two weeks. The side effects came almost immediately after the first dose. Nothing huge, but these poisons are obviously not as much fun as the earlier ones. The rash on face and scalp is quite bad, but not as bad as I thought it could be. For Jan Arne of course it is annoying, as it can be quite itchy. He has not really had nausea or diarrhea but he's not been 100% either, not eating as well as before. And he's been quite tired. All in all, I bet life without chemo would be nicer.
On the positive side, the rash is supposed to be an indication that Erbitux is working. Also, in the blood test last week, a week after the first dose, the platelet count had gone up to 118. So if the doc was right and it is the tumours that kept the value low, a higher platelet count sounds good, maybe it indicates that the new combo is kicking the tumours' butt.
News from other fronts: Yes Norway won the Eurovision Song Contest, and Yes I voted for Norway too, and Summer is in Finland: 29C yesterday and 10C predicted for Thursday, what can be more Finnish than that.
Tuesday, May 19, 2009
The New Combo
The Wife here updating the blog for a change.
Today we had a doctor's appointment again, this time with the "head guy" so we were happy. The platelet count was still below 100 but the doctor said that now it looks like the disease itself is keeping it low. This means that the tumours may secrete something that keeps the platelet level low. However, as it has been low but on the same level for a while now he said the treatment can be started again so they started today.
The new combo is irinotecan (brand name Camptosar) and cetuximab (Erbitux) as injection, once a week this time, and the old friend capesitabine (Xeloda) as tablets for two weeks. The set of most common side effects from irinotecan is nausea, diarrhea, hair loss, and from cetuximab an acne-like rash in face and upper torso. There are effective medicines against nausea and diarrhea, and the rash may be milder with proper body lotions, and with hair we will just do the regular summer cut for Jan Arne already. But keep your thumbs up or pray, whatever suits you best, that the side effects will be on the mild side. There is, however, a chance he will finally start looking a bit different though. This far you have not been able seen at all that he has cancer.
We also asked about the CT scan results as the doctor last week could not say much about them. This is what the "head guy" replied: The unclear borders of tumours indicate that they may be growing (especially interpreted with CEA value). The mention in the CT scan report about lymph nodes next to liver being small means that they are normal size but that does not mean there wouldn't be any cancer cells in them. And about the number of tumours in liver: the six whose measurements we have been following (sixth one supposedly no longer seen in the most recent scan, according to the radiologist report) are the biggest and measurable ones, but that does not mean that there would not be other smaller ones in the liver as well. So no positive news really but I guess we already knew the answer.
Let's just all now hope (and keep our thumbs up, and pray, again whatever suits you) that the new combo will do the deed again and kick the cancer back a few notches! It is indeed a battlefield, no wonder they use a lot of war metaphors when talking about treating cancer.
Today we had a doctor's appointment again, this time with the "head guy" so we were happy. The platelet count was still below 100 but the doctor said that now it looks like the disease itself is keeping it low. This means that the tumours may secrete something that keeps the platelet level low. However, as it has been low but on the same level for a while now he said the treatment can be started again so they started today.
The new combo is irinotecan (brand name Camptosar) and cetuximab (Erbitux) as injection, once a week this time, and the old friend capesitabine (Xeloda) as tablets for two weeks. The set of most common side effects from irinotecan is nausea, diarrhea, hair loss, and from cetuximab an acne-like rash in face and upper torso. There are effective medicines against nausea and diarrhea, and the rash may be milder with proper body lotions, and with hair we will just do the regular summer cut for Jan Arne already. But keep your thumbs up or pray, whatever suits you best, that the side effects will be on the mild side. There is, however, a chance he will finally start looking a bit different though. This far you have not been able seen at all that he has cancer.
We also asked about the CT scan results as the doctor last week could not say much about them. This is what the "head guy" replied: The unclear borders of tumours indicate that they may be growing (especially interpreted with CEA value). The mention in the CT scan report about lymph nodes next to liver being small means that they are normal size but that does not mean there wouldn't be any cancer cells in them. And about the number of tumours in liver: the six whose measurements we have been following (sixth one supposedly no longer seen in the most recent scan, according to the radiologist report) are the biggest and measurable ones, but that does not mean that there would not be other smaller ones in the liver as well. So no positive news really but I guess we already knew the answer.
Let's just all now hope (and keep our thumbs up, and pray, again whatever suits you) that the new combo will do the deed again and kick the cancer back a few notches! It is indeed a battlefield, no wonder they use a lot of war metaphors when talking about treating cancer.
Wednesday, May 13, 2009
Change
The doctor called me up this afternoon as she promised. They had discussed my situation in the department meeting this morning. They had come to the conclusion that the current chemo regime is no longer working as the tumours have not decreased in size significantly since the February CT scan. My new regime will contain only one drug which is marketed as Camptosar. I will get it as IV once a week for four weeks in a row. Then there will be a two weeks rest period. The plan is to start it next week if my platelets count is good enough.
I asked why they wouldn't combine Camptosar with Avastin and she said it is because of my the situation with the platelets as Avastin could also have a negative impact.
In yesterday's discussion with the doctor, my wife asked about a drug called Erbitux that could be combined with Camptosar. The doctor promised to bring this up in the department meeting. In today's call she said that they will add Erbitux to my new chemo plan only if my cancer cells "express EGFR". Actually, I've no clue what this means even after reading about it. They will use the biopsies of my tumours taken last summer to determine EGFR expression. If there is a positive finding, they'll put Erbitux in as well.
The Eurovision Song Contest festival is on. My wife is a big fan. I would say there's one country this year that has got something special. It's Armenia with the song "Jan, Jan". According to the Norwegian media, Norway is again among the favourites.
I asked why they wouldn't combine Camptosar with Avastin and she said it is because of my the situation with the platelets as Avastin could also have a negative impact.
In yesterday's discussion with the doctor, my wife asked about a drug called Erbitux that could be combined with Camptosar. The doctor promised to bring this up in the department meeting. In today's call she said that they will add Erbitux to my new chemo plan only if my cancer cells "express EGFR". Actually, I've no clue what this means even after reading about it. They will use the biopsies of my tumours taken last summer to determine EGFR expression. If there is a positive finding, they'll put Erbitux in as well.
The Eurovision Song Contest festival is on. My wife is a big fan. I would say there's one country this year that has got something special. It's Armenia with the song "Jan, Jan". According to the Norwegian media, Norway is again among the favourites.
Tuesday, May 12, 2009
May scan
Yesterday I was supposed to finally start the now twice postponed treatment round, but the platelets count had further declined compared to last week. The value was now 78. The nurse said they would postpone the treatment with another week.
Today I had the doctor's appointment where I got to hear the analysis of last Friday's CT scan. I was quite nervous this time and expected to hear some negative news. I had the increased CEA value particularly in mind. The senior doctor I thought I was going to see had taken a one week holiday (!). His deputy was one of the young doctors we have met before.
The situation in the liver is roughly on the same level as in February. The strategic measures are now:
* 3,0cm x 2,7cm (in February 2,7cm x 2,6 cm)
* 6,9cm x 4,5cm (in February 6,7cm x 4,2cm)
* 6,6cm x 2,8cm (in February 7,6cm x 3,7cm)
* 3,1cm x 2,3cm (in February 3,1cm x 2,2cm)
* 1,2cm x 0,9cm (in February 1,1cm)
The sixth tumour they measured in February to be 6mm in diameter can no longer be seen. The report also mentioned that there are no new tumours and that some measurements were difficult as the edges of some tumours were unclear.
As a summary, some of the tumours are still big, some have increased in size, some are the same size as before and some have shrunk. The doctor didn't give a clear conclusion but she said it may be the current chemo regime is no longer working as the tumours have not decreased in size significantly. There will be a department meeting tomorrow morning where my case and treatment plan will be discussed. She would call me in the afternoon and give me an update. The senior doctor will be back on Monday and probably make the final call.
We also discussed the issue with low platelets count. The doctor said their practice is to wait until the body recovers and starts producing platelets normally. Re-fill of platelets is done only when the value goes below 20 which means the situation is life threatening. We said we are a little worried about this as it has now been three weeks since I stopped eating the Xeloda pills and five weeks since last dose of Avastin. We also asked if there could be other reasons for low platelets count than the chemo. Could the cancer for example have spread to the bones where the platelets are produced? The doctor said no as such a situation would be seen in other blood values and they all are fine. We agreed I'll wait for the next blood test (Friday or Monday) and cross my fingers that the count is up.
Today I had the doctor's appointment where I got to hear the analysis of last Friday's CT scan. I was quite nervous this time and expected to hear some negative news. I had the increased CEA value particularly in mind. The senior doctor I thought I was going to see had taken a one week holiday (!). His deputy was one of the young doctors we have met before.
The situation in the liver is roughly on the same level as in February. The strategic measures are now:
* 3,0cm x 2,7cm (in February 2,7cm x 2,6 cm)
* 6,9cm x 4,5cm (in February 6,7cm x 4,2cm)
* 6,6cm x 2,8cm (in February 7,6cm x 3,7cm)
* 3,1cm x 2,3cm (in February 3,1cm x 2,2cm)
* 1,2cm x 0,9cm (in February 1,1cm)
The sixth tumour they measured in February to be 6mm in diameter can no longer be seen. The report also mentioned that there are no new tumours and that some measurements were difficult as the edges of some tumours were unclear.
As a summary, some of the tumours are still big, some have increased in size, some are the same size as before and some have shrunk. The doctor didn't give a clear conclusion but she said it may be the current chemo regime is no longer working as the tumours have not decreased in size significantly. There will be a department meeting tomorrow morning where my case and treatment plan will be discussed. She would call me in the afternoon and give me an update. The senior doctor will be back on Monday and probably make the final call.
We also discussed the issue with low platelets count. The doctor said their practice is to wait until the body recovers and starts producing platelets normally. Re-fill of platelets is done only when the value goes below 20 which means the situation is life threatening. We said we are a little worried about this as it has now been three weeks since I stopped eating the Xeloda pills and five weeks since last dose of Avastin. We also asked if there could be other reasons for low platelets count than the chemo. Could the cancer for example have spread to the bones where the platelets are produced? The doctor said no as such a situation would be seen in other blood values and they all are fine. We agreed I'll wait for the next blood test (Friday or Monday) and cross my fingers that the count is up.
Wednesday, May 6, 2009
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.
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.
Tuesday, April 28, 2009
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.
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.
Sunday, April 26, 2009
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.
Thursday, April 9, 2009
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.
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.
Sunday, April 5, 2009
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.
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.
Wednesday, March 11, 2009
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.
Monday, March 2, 2009
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.
Monday, February 23, 2009
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.
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.
Sunday, February 22, 2009
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.
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.
Monday, February 2, 2009
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?
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?
Wednesday, January 28, 2009
Back at work
In December, after half a year on sick leave, I felt the need for a little change in my life. I discussed the possibility of returning to active work life with both the doctor at the hospital and the doctor and my manager at work. All parties were very positive and supported the idea. We decided I will do 60% for a three months period, from January until end of March. Then we'll review with the doctors my health situation and decide how to continue.
As we're approaching February it means I've been close to a month at work already. It has actually been a very good experience. There are lots of nice people there and I've got some interesting stuff to do. Hopefully I'll be able to continue working after this three months period is over.
As we're approaching February it means I've been close to a month at work already. It has actually been a very good experience. There are lots of nice people there and I've got some interesting stuff to do. Hopefully I'll be able to continue working after this three months period is over.
Monday, January 26, 2009
The dog
I had an incident with the car. Some friends of ours from Norway visited us a this weekend. On Friday afternoon I picked them up from the hotel they stayed in and headed back to our place. We drove through a residential area where speed limit was 50 km/h. It was dark and the roads were icy. Out from nowhere came a small dog and ran straight into the road in front of us. We heard a bang as if we had driven into a large chunk of ice. It happened so fast I didn't even manage to hit the break before the impact.
I parked on a side street and ran back to find a woman, the dog owner apparently, lying on the road and crying. She was holding tightly onto the dog. The dog was surprisingly alive but didn't move and was bleeding from one eye and looked at me with the other. I felt horrible and didn't really know what to say.
There were some people around desperately trying to find a phone number to an animal clinic. They asked me and I replied I had no clue if even such exists in town. I said I was sorry for what happened but that there was nothing I could have done. There was a man there who seemed to be part of the family. After a short while he had found the address to the clinic and went to get his car. I got his phone number and they drove off.
Later on in the evening I contacted him. He said the dog was still alive and that the doctor had fixed him up. I didn't quite get all what they had had to do, but some bones were broken and the dog had taken a hit to the head. If it gets away with it it is a very lucky dog all in all. He asked if the car was damaged but I said that didn't matter. I will probably contact him again later this week to see how the dog is doing. My wife suggested we'd buy the dog owners something. I suggested a dog chain. That was a (bad) joke naturally.
I parked on a side street and ran back to find a woman, the dog owner apparently, lying on the road and crying. She was holding tightly onto the dog. The dog was surprisingly alive but didn't move and was bleeding from one eye and looked at me with the other. I felt horrible and didn't really know what to say.
There were some people around desperately trying to find a phone number to an animal clinic. They asked me and I replied I had no clue if even such exists in town. I said I was sorry for what happened but that there was nothing I could have done. There was a man there who seemed to be part of the family. After a short while he had found the address to the clinic and went to get his car. I got his phone number and they drove off.
Later on in the evening I contacted him. He said the dog was still alive and that the doctor had fixed him up. I didn't quite get all what they had had to do, but some bones were broken and the dog had taken a hit to the head. If it gets away with it it is a very lucky dog all in all. He asked if the car was damaged but I said that didn't matter. I will probably contact him again later this week to see how the dog is doing. My wife suggested we'd buy the dog owners something. I suggested a dog chain. That was a (bad) joke naturally.
Monday, January 12, 2009
Ninth round
Today we had another doctor's appointment and afterwards I started the ninth round of chemotherapy. Surprise, we were called in by yet another doctor we haven't met before. She was quite young and said all decisions are made by the senior doctor that we were told last time would become our fixed doctor. This appointment was obviously considered a routine follow-up that the junior doctor could easily handle. Well, she did handle it well, but there wasn't any new info really. Only the standard blood tests were taken last Friday and all values are still pretty much the same they have been since July. That's good, as usually they of course tend to get worse during chemotherapy.
My wife had as usual a long list of questions. Some of them were so tricky the junior doctor said we'd better ask the senior doctor. My wife asked when does the surgeon look at the CT scan pictures to see if a resection or radio frequency ablation of the liver tumours would be possible. The doctor replied that the senior doctor goes to surgeons' meetings and brings forth cases as he sees fit. We'll put this down on our questions list for next appointment as we expect to see our fixed doctor again then.
The senior doctor had confirmed before the meeting that we will continue with the same medication this round. However, we had an interesting discussion regarding one of the medicines, oxaliplatin (Eloxatin). The doctor told us that the long-term side effect, namely neuropathy (loosing feeling in fingers and feet) from oxaliplatin, tends to start getting worse from eight or ninth round of chemo, and they then need to consider if they should stop that chemo so that the damage to the nerves does not get bad. I have increasingly had the problem of numbness in my fingers, and I got my ninth round of chemo today. They may have to drop oxaliplatin soon. The doctor said that then they will continue with capesitabin (Xeloda) and Avastin only. They are effective drugs by themselves too, but of course they would then monitor if the tumours would start growing again, in which case they would add some other chemo to the treatment.
The next treatment is three weeks from now. Five weeks from there, on February 16th, there will be a CT scan. Until then there will not be very exciting news I am afraid.
My wife had as usual a long list of questions. Some of them were so tricky the junior doctor said we'd better ask the senior doctor. My wife asked when does the surgeon look at the CT scan pictures to see if a resection or radio frequency ablation of the liver tumours would be possible. The doctor replied that the senior doctor goes to surgeons' meetings and brings forth cases as he sees fit. We'll put this down on our questions list for next appointment as we expect to see our fixed doctor again then.
The senior doctor had confirmed before the meeting that we will continue with the same medication this round. However, we had an interesting discussion regarding one of the medicines, oxaliplatin (Eloxatin). The doctor told us that the long-term side effect, namely neuropathy (loosing feeling in fingers and feet) from oxaliplatin, tends to start getting worse from eight or ninth round of chemo, and they then need to consider if they should stop that chemo so that the damage to the nerves does not get bad. I have increasingly had the problem of numbness in my fingers, and I got my ninth round of chemo today. They may have to drop oxaliplatin soon. The doctor said that then they will continue with capesitabin (Xeloda) and Avastin only. They are effective drugs by themselves too, but of course they would then monitor if the tumours would start growing again, in which case they would add some other chemo to the treatment.
The next treatment is three weeks from now. Five weeks from there, on February 16th, there will be a CT scan. Until then there will not be very exciting news I am afraid.
Beat it!
A group of friends of ours got fed up with our inability to respond to their offers of help. They designed a t-shirt that people who know us and want to "support our cause" could get. To be frank, we felt a bit embarrassed about the entire thing at first but we also understood that this way people could feel like they are contributing. We probably would have felt the same if we'd been in the same situation. The shirt was going to look like a sports t-shirt so our friends asked for some input what number they could put on it. I gave them the magic number 20. They put in addition the text "Beat it!" on the shirt.
Just before Christmas two of our friends stopped by our home to tell us how many people had gotten the shirt, and to show us photos of people wearing the shirt. We were astonished. We had not realised how many friends we have and how many people my story had touched. We also got a list of e-mail addresses of everyone and we sent out a thank-you mail nd Christmas wishes to everyone. Many had been wondering about the number on the shirt and this is what we wrote about the magic number 20:
Well, it's simply the number the Norwegian footballer Ole Gunnar Solskjær played with during his many seasons in Manchester United. He's probably the most successful Norwegian footballer ever. So thank you for supporting Norwegian football! :o) Well, there's something more to the story. Ole Gunnar was a great football player but turned more into a second choice for the manager Alex Ferguson. However, he never ever complained and always tried to make the best out of the situation. In fact, he became very good at coming in at the end of games to make last minute goals. This positive attitude and "try to make the best out of it" are then two issues that are important to me as well at the moment.
Just before Christmas two of our friends stopped by our home to tell us how many people had gotten the shirt, and to show us photos of people wearing the shirt. We were astonished. We had not realised how many friends we have and how many people my story had touched. We also got a list of e-mail addresses of everyone and we sent out a thank-you mail nd Christmas wishes to everyone. Many had been wondering about the number on the shirt and this is what we wrote about the magic number 20:
Well, it's simply the number the Norwegian footballer Ole Gunnar Solskjær played with during his many seasons in Manchester United. He's probably the most successful Norwegian footballer ever. So thank you for supporting Norwegian football! :o) Well, there's something more to the story. Ole Gunnar was a great football player but turned more into a second choice for the manager Alex Ferguson. However, he never ever complained and always tried to make the best out of the situation. In fact, he became very good at coming in at the end of games to make last minute goals. This positive attitude and "try to make the best out of it" are then two issues that are important to me as well at the moment.
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