I've just arrived back from my CT scan. I won't get the results until later this afternoon. While I'm waiting, I thought I'd post about another appointment I recently had.
Back here I talked a little about post-chemotherapy cognitive impairment, often called "chemofog" or "chemobrain". A week or two ago, I had a chance to see one of Australia's leading specialists into the field. Formal study of the phenomenon is quite new (only in the last couple of years has it been recognised as a condition) and has focussed almost entirely on breast cancer patients (this is now being expanded to bowel cancers). Nonetheless, it seems that there is a consistent experience reported across many cancer patients of finding short-term memory and concentration more difficult during and after chemotherapy treatment. As I described my difficulties, I was told that I was a classic case. These complaints seem to be particularly common amongst more educated patients who rely on higher cognitive skills more often in their employment and it is usually upon returning to work that it becomes most noticeable. Although not nearly as pronounced as it was during treatment, my own frustrations surfaced again when I returned to trying to do some more "serious" reading, writing and lecturing in the second half of last year.
Although I am outside the scope of present research (having had the "wrong" kind of cancer), I was offered some follow-up with a neuropsychologist to more formally test for any cognitive impairment. The specialist I saw told me that my results are likely to still be within the "normal" range, since I probably began ahead of the game. Much more interesting would be to test how I go now compared with my function prior to treatment, which is, of course, impossible.
As I said, research into this phenomenon is still new, but the latest results seem to indicate that chemotherapy, while contributing to the problem, is not the only cause, as similar symptoms and testable impairment can be seen in cancer patients prior to their chemotherapy. Whether this is the result of stress or a function of the cancer itself (or even the body's reaction to it) remains to be determined. Interestingly, there are some similar cognitive problems encountered by sufferers of a few other chronic conditions (such as the early stages of HIV). Thus, calling this condition "chemofog" is probably a misnomer.
I'll post again once I have today's CT result.
Showing posts with label chemotherapy. Show all posts
Showing posts with label chemotherapy. Show all posts
Tuesday, April 15, 2008
Wednesday, January 23, 2008
Oncology consultation
After my fourth good scan last week, I saw my oncologist this morning, who was also happy with the result. He didn't think a PET scan was necessary and said my next CT scan could be in three months, rather than two. This is all good news.
As for ongoing side-effects of the treatment, we discussed two things. First, I mentioned chemofog and he referred me to one of his colleagues, whom he said is a leading researcher into the phenomenon. She is away at the moment, but will contact me soon to discuss it.
Second, he pointed out the visible scarring of my lungs from radiotherapy. The damaged region comprises less than 10% of the total volume, but is still a significant amount. He said I will probably not win the Tour de France now.
As for ongoing side-effects of the treatment, we discussed two things. First, I mentioned chemofog and he referred me to one of his colleagues, whom he said is a leading researcher into the phenomenon. She is away at the moment, but will contact me soon to discuss it.
Second, he pointed out the visible scarring of my lungs from radiotherapy. The damaged region comprises less than 10% of the total volume, but is still a significant amount. He said I will probably not win the Tour de France now.
Thursday, December 27, 2007
Chemofog
Today a year ago I started chemotherapy. Although I've written a little more about the long term effects of radiotherapy, I've been realising that I don't think I have entirely recovered from chemo yet either.In particular, I recently read a little about 'chemobrain' also known as 'chemofog', or more technically, post-chemotherapy cognitive impairment. In particular, as I read this article, I found it described my experience in ways that were surprisingly familiar.
It's not that I can't function, but complex things just seem more difficult, I get tired and confused more easily and have occasional memory lapses. It was much worse during chemo at the start of the year. I had frequent short-term memory lapses, had great difficulty concentrating on a task (and could not multitask) and found my empathy was considerably dampened. I could figure out what someone might be thinking/feeling if I put my mind to it, but it didn't come naturally and intuitively. Instead, my grasp of the emotional experience of others remained a kind of head knowledge without feeling much myself. This wasn't particularly helpful when it was a very emotional time for others! These effects all remain in a muted way (especially getting tired easily).
The research into this phenomenon is all quite recent (the few papers I could find were published in '06 or '07), but one study study that (at least some forms of) chemotherapy had medium-term effects on the physical size of the brain, causing a measurable reduction in size for a few years.
Complicating matters, the whole experience of getting so dramatically sick and then feeling physically (and mentally) weak for months has dented my confidence. Sometimes it is difficult to tell whether I am experiencing loss of competence or simply confidence.
This is another area in which I am learning to trust God, and thank him for the abilities and opportunities with which he has blessed me. I am learning to be human, finite, a creature.
This is the day that the LORD has made. Let us rejoice and be glad in it. - Psalm 118.24
Thursday, February 22, 2007
Update: 22nd Feb
Needle-free Wednesday failure
Yesterday should have been my first needle-free Wednesday since I finished chemotherapy last week. However, as the day progressed, I grew more stiff and tired and developed a headache. During the afternoon, my temperature started to rise.
Nevertheless, we decided to go to the second meeting of our new Bible study group for 20-30 somethings at All Souls, which turned out to be an excellent decision. After having 7 people last week, this time we had 15! We're now thinking of starting a second group on Tuesday nights. This is very exciting and an answer to prayer as we seek to build a sub-community within the church in this previously under-represented demographic. We started a series on the passion narrative in Luke (very appropriate for Lent), in parallel with the sermons until Easter. The triumphal entry is such an interesting passage (Luke 19.28-40) - perhaps I'll post on it sometime soon on my main blog.
However, when we got home from the group, my temperature had breached the limits of the normal adult range. This, for a chemo patient, is potentially quite serious since the treatment reduces the body's ability to fight infections. An illness that might send a healthy person to bed for a day can be life-threatening if your white cell count is too low.
So we went to Emergency at RPAH and discovered that combining 'chemotherapy' and 'temperature' turns out to be one of those secret passwords that gets you lots of attention very quickly from the triage nurse. One of the 'benefits' of my condition is that I seem to jump lots of queues and have had less experience being forced to be patient than most patients.
As it turned out, my blood count was unexpectedly good so close to chemo treatment. Since they couldn't find the source of the fever, they decided to keep me under observation and hydrated (i.e. with a drip, requiring yet another needle and cannula, hence the failure of needle-free Wednesday). By morning, my fever had broken and by six this evening I was discharged. This is the first time I've needed to be admitted to hospital, which is a great blessing. I admire those who work there, as they can be very depressing places.
For now, the main task health-wise is continuing to rest and remain hydrated. The main task life-wise is still loving God and neighbour.
Yesterday should have been my first needle-free Wednesday since I finished chemotherapy last week. However, as the day progressed, I grew more stiff and tired and developed a headache. During the afternoon, my temperature started to rise.
Nevertheless, we decided to go to the second meeting of our new Bible study group for 20-30 somethings at All Souls, which turned out to be an excellent decision. After having 7 people last week, this time we had 15! We're now thinking of starting a second group on Tuesday nights. This is very exciting and an answer to prayer as we seek to build a sub-community within the church in this previously under-represented demographic. We started a series on the passion narrative in Luke (very appropriate for Lent), in parallel with the sermons until Easter. The triumphal entry is such an interesting passage (Luke 19.28-40) - perhaps I'll post on it sometime soon on my main blog.
However, when we got home from the group, my temperature had breached the limits of the normal adult range. This, for a chemo patient, is potentially quite serious since the treatment reduces the body's ability to fight infections. An illness that might send a healthy person to bed for a day can be life-threatening if your white cell count is too low.
So we went to Emergency at RPAH and discovered that combining 'chemotherapy' and 'temperature' turns out to be one of those secret passwords that gets you lots of attention very quickly from the triage nurse. One of the 'benefits' of my condition is that I seem to jump lots of queues and have had less experience being forced to be patient than most patients.
As it turned out, my blood count was unexpectedly good so close to chemo treatment. Since they couldn't find the source of the fever, they decided to keep me under observation and hydrated (i.e. with a drip, requiring yet another needle and cannula, hence the failure of needle-free Wednesday). By morning, my fever had broken and by six this evening I was discharged. This is the first time I've needed to be admitted to hospital, which is a great blessing. I admire those who work there, as they can be very depressing places.
For now, the main task health-wise is continuing to rest and remain hydrated. The main task life-wise is still loving God and neighbour.
Wednesday, February 14, 2007
Update: 14th Feb
Final Chemo
After waiting for three hours for blood results that usually take 30 minutes, we ended up back in the pack today rather than being one of the first. This made for a long day: 8 am start and just got home at 5.30 pm. But it's over - at least the chemo part (3 more days of radiotherapy). I've really enjoyed getting to know some of the nurses and their quirky sense of humour. Don't think I've overcome my needle squeamishness, even after so many (I lost count weeks ago).
Our oncologist was again positive today. Once all treatment is over, we'll wait a month and then I have a neck-to-toe CT scan. He said he would be surprised and disappointed if the news is bad, but since he's still unsure of the cause and nature of the growth, there are certainly no guarantees. After the CT scan, we wait another month and I have a PET scan to confirm there is no unusual growth activity (God willing). If that is also clear, then I'll keep having checks every 3-6 months for a few years before the all clear is given. If the growth is still active in a month or two, then the question of surgery will again be asked (which depends on how much it might have shrunk and in which directions. When I first presented, surgery was ruled out because the growth was inside my left bronchial tube and too close to my oesophagus and aorta). If the news is very bad (new growths), then that is a whole new ball game, probably involving a shift from curative to palliative treatment, but he said he'd be very surprised were that to be the case. We continue to trust God for the outcome, whatever it may be, though are very thankful for the positive indications we've been receiving so far.
As for side-effects, the radiotherapy has certainly overtaken the chemotherapy. The main issues now are still tiredness, but also swallowing and reflux. In particular, I am basically now on a fluid diet: soup and tasty dietary supplement drinks. Occasionally, I put in the effort to have something very soft, but it is quite painful, even using an oral anaesthetic (Xylocaine) that I gargle before some meals. The reflux is more a constant dull feeling of burning as the lower end of my oesophagus, weakened by the radiotherapy, fails to keep back the acids from my stomach. I take antiacids to reduce the effect, but it's particularly annoying at night and I still sleep propped up in bed (and with our bed propped up on some bricks) to get what help I can from gravity.
My second sermon on Sunday (on the two natures of Christ in the Apostles' Creed) was enjoyable to write, though due to tiredness, I ran out of time to cut it back as much as I would have liked. It can be downloaded here (or it will there soon, depends on the volunteer who manages the website). Here is a taste. Last night, we also started a new Bible study for 20s/30s and got off to a solid start.
After waiting for three hours for blood results that usually take 30 minutes, we ended up back in the pack today rather than being one of the first. This made for a long day: 8 am start and just got home at 5.30 pm. But it's over - at least the chemo part (3 more days of radiotherapy). I've really enjoyed getting to know some of the nurses and their quirky sense of humour. Don't think I've overcome my needle squeamishness, even after so many (I lost count weeks ago).
Our oncologist was again positive today. Once all treatment is over, we'll wait a month and then I have a neck-to-toe CT scan. He said he would be surprised and disappointed if the news is bad, but since he's still unsure of the cause and nature of the growth, there are certainly no guarantees. After the CT scan, we wait another month and I have a PET scan to confirm there is no unusual growth activity (God willing). If that is also clear, then I'll keep having checks every 3-6 months for a few years before the all clear is given. If the growth is still active in a month or two, then the question of surgery will again be asked (which depends on how much it might have shrunk and in which directions. When I first presented, surgery was ruled out because the growth was inside my left bronchial tube and too close to my oesophagus and aorta). If the news is very bad (new growths), then that is a whole new ball game, probably involving a shift from curative to palliative treatment, but he said he'd be very surprised were that to be the case. We continue to trust God for the outcome, whatever it may be, though are very thankful for the positive indications we've been receiving so far.
As for side-effects, the radiotherapy has certainly overtaken the chemotherapy. The main issues now are still tiredness, but also swallowing and reflux. In particular, I am basically now on a fluid diet: soup and tasty dietary supplement drinks. Occasionally, I put in the effort to have something very soft, but it is quite painful, even using an oral anaesthetic (Xylocaine) that I gargle before some meals. The reflux is more a constant dull feeling of burning as the lower end of my oesophagus, weakened by the radiotherapy, fails to keep back the acids from my stomach. I take antiacids to reduce the effect, but it's particularly annoying at night and I still sleep propped up in bed (and with our bed propped up on some bricks) to get what help I can from gravity.
My second sermon on Sunday (on the two natures of Christ in the Apostles' Creed) was enjoyable to write, though due to tiredness, I ran out of time to cut it back as much as I would have liked. It can be downloaded here (or it will there soon, depends on the volunteer who manages the website). Here is a taste. Last night, we also started a new Bible study for 20s/30s and got off to a solid start.
Thursday, February 8, 2007
Update: 8th Feb
Second Last ChemoWe can see the light at the end of the tunnel, at least for this cycle of treatment. After six weeks of chemotherapy, there is only one more to go (and about ten more weekdays of radiotherapy). Yesterday's treatment went smoothly. I had an earlier appointment than usual and so managed to beat some of the usual rush and be home by 2 pm. I also felt more able to concentrate and so managed to read with more concentration (that's some Kierkegaard photocopied on the table in front of me in one picture). I've included some images to give something of a feel for the space. The huge dose of steroids they give me to avoid another reaction did mean that when I woke in the middle of the night, my brain was very active and I spent an hour or two writing down ideas. Hopefully, I'll get better sleep tonight once the effects have worn off.
Wednesday, January 31, 2007
Update: 31st Jan
Just a brief post to say that chemotherapy today was not affected by my food poisoning episode yesterday. I still received both the usual drugs (I will soon continue to extend the FAQs to discuss my treatment), and again had no reaction, thanks to the 20 mg of Dexmethsone that will probably keep me up tonight! Finding good veins for the canula is getting more difficult as some of the ones they have been using in the past are hardened from the treatment.
Also, my oncologist spoke very positively today and how well things seem to be going in his opinion. We discovered that I will probably receive only two more rounds of chemotherapy (and so chemo and radio will end around the same time). At that time, we'll wait four or six weeks for the radiotherapy to have its maximum effect and then repeat CT and PET scans to see where things are up to. We're praying that the growth will have either disappeared or no longer be active.
Today we discovered that a very friendly Christian lady we met a few weeks ago and talked to again today while waiting for chemotherapy is someone we've been praying for every week at All Souls, the sister of another All Souls member also undergoing chemo. It was encouraging to hear her story (and that of her niece, who accompanies her) and see her joy in God (she has only come to follow Jesus fairly recently, having been introduced to him via her niece).
Also, my oncologist spoke very positively today and how well things seem to be going in his opinion. We discovered that I will probably receive only two more rounds of chemotherapy (and so chemo and radio will end around the same time). At that time, we'll wait four or six weeks for the radiotherapy to have its maximum effect and then repeat CT and PET scans to see where things are up to. We're praying that the growth will have either disappeared or no longer be active.
Today we discovered that a very friendly Christian lady we met a few weeks ago and talked to again today while waiting for chemotherapy is someone we've been praying for every week at All Souls, the sister of another All Souls member also undergoing chemo. It was encouraging to hear her story (and that of her niece, who accompanies her) and see her joy in God (she has only come to follow Jesus fairly recently, having been introduced to him via her niece).
Tuesday, January 30, 2007
Update: 30th Jan
The cost of cheap Thai
Today I had a bad afternoon. After eating cheap Thai on King St for lunch, I had food poisoning and needed to go into RPAH (my local hospital: Royal Prince Alfred Hospital) for a few hours to get checked out and have some fluids replaced. I've been told that during chemo, if I start to feel sick, I ought to go in and get checked out, because if my immune system is too low to fight an infection, then what might usually put someone in bed for a few hours could become much more serious. As it was, the food poisoning came and went quite quickly and I was in no serious danger, but it wasn't a pleasant afternoon. At least I had a good morning.
Tomorrow, I will go in again and have chemo #5 if my white blood count continues to be high enough. Today was day #20 (of 33) of radiotherapy.
In other news, our second week at our new church, All Souls Anglican, Leichhardt went quite well. I preached at both services on 'Global Scarcity', the fifth and final sermon in a summer series on globalisation. Sometime soon, it should be available for download from the All Souls site. We continue to feel very welcomed as we get to know more of the community.
Today I had a bad afternoon. After eating cheap Thai on King St for lunch, I had food poisoning and needed to go into RPAH (my local hospital: Royal Prince Alfred Hospital) for a few hours to get checked out and have some fluids replaced. I've been told that during chemo, if I start to feel sick, I ought to go in and get checked out, because if my immune system is too low to fight an infection, then what might usually put someone in bed for a few hours could become much more serious. As it was, the food poisoning came and went quite quickly and I was in no serious danger, but it wasn't a pleasant afternoon. At least I had a good morning.
Tomorrow, I will go in again and have chemo #5 if my white blood count continues to be high enough. Today was day #20 (of 33) of radiotherapy.
In other news, our second week at our new church, All Souls Anglican, Leichhardt went quite well. I preached at both services on 'Global Scarcity', the fifth and final sermon in a summer series on globalisation. Sometime soon, it should be available for download from the All Souls site. We continue to feel very welcomed as we get to know more of the community.
Wednesday, January 24, 2007
Update: 24th Jan
The Psalms end with this invitation:
Today I had my fifth (weekly) chemotherapy and seventeenth (daily on weekdays) radiotherapy sessions. They have all been going smoothly, apart from a sudden reaction two weeks ago during the administration of one of the chemotherapy drugs. Although not uncommon, the speed and intensity were quite scary as within sixty seconds I flushed, became very short of breath and had intense back pain for a couple of minutes until I was given drugs to counter it. Since then, I've been given an extra-strong dose of steroids before each chemotherapy, which has prevented another reaction but disrupted sleep on Wednesday nights (and given me a big appetite - I am still putting on weight, having been told by my dietician to enjoy a high protein, high calorie diet (!)). Generally, however, my sleep has been better and our daily life has been fairly 'normal' during January, albeit a little slower than usual with both of us feeling tired much of the time. I have also sometimes been having difficulty concentrating and find my increased absent-mindedness frustrating.
Jessica and I have both started work for the year. Jess is working 3 days/wk in St Leonards as a social researcher. On Sunday I also began 3 days/wk (or some fraction of it, depending on energy levels) at All Souls Anglican Church, Leichhardt as a lay ministry assistant. I had energy on Sunday and enjoyed meeting new people. We're looking forward to getting to know and be part of this community at greater depth, as well as trying to reach out to the local area, particularly to those in the 20-30 somethings. If you're looking for a church around Leichhardt, feel free to drop in on a Sunday (10.00 am or 6.30 pm, cnr Norton and Marion Sts).
We've been thinking recently about how it's important for the cancer to not become the centre of our lives and routine. Life is a gift and staying healthy is a good aim, but is not the most important thing. More important is continuing to grow in our love for God and those around us.
For those who pray, we continue to appreciate and thank God regularly for your support. Here are some suggestions.
Give thanks:
• For continued improvements to breathing and the reduction in the growth.
• For new opportunities to work and serve, especially for the community at All Souls, Leichhardt and what God is doing amongst them, which we'd love to join in on.
• For unexpected acts of generosity and support from a wide range of people.
Pray:
• That the treatment would continue to reduce and remove the tumour with minimal and manageable side-effects and no further reactions.
• That as we enter new contexts we would both have energy to keep caring for one another and strength to build new relationships of trust and grace.
• That our focus would remain on the primary things (loving God and neighbour), with secondary tasks taking their appropriate place.
Let everything that has breath praise the LORD.I have plenty of reasons to praise God at the moment, since I am now halfway into my treatment cycle and my breathing is basically back to normal. Although it will be a number of weeks before we have any more scans, at this stage, it seems that the tumour is shrinking (at least my bronchial tube no longer feels obstructed). Things have changed a lot since Christmas, when I would wake every few hours to find my left lung wasn't getting any air! I have exchanged some of the direct effects of the tumour (breathing and coughing) for side-effects of the treatment (mainly tiredness and weakness, but also some difficulty swallowing, which will grow as radiotherapy continues).- Psalm 150.6
Today I had my fifth (weekly) chemotherapy and seventeenth (daily on weekdays) radiotherapy sessions. They have all been going smoothly, apart from a sudden reaction two weeks ago during the administration of one of the chemotherapy drugs. Although not uncommon, the speed and intensity were quite scary as within sixty seconds I flushed, became very short of breath and had intense back pain for a couple of minutes until I was given drugs to counter it. Since then, I've been given an extra-strong dose of steroids before each chemotherapy, which has prevented another reaction but disrupted sleep on Wednesday nights (and given me a big appetite - I am still putting on weight, having been told by my dietician to enjoy a high protein, high calorie diet (!)). Generally, however, my sleep has been better and our daily life has been fairly 'normal' during January, albeit a little slower than usual with both of us feeling tired much of the time. I have also sometimes been having difficulty concentrating and find my increased absent-mindedness frustrating.
Jessica and I have both started work for the year. Jess is working 3 days/wk in St Leonards as a social researcher. On Sunday I also began 3 days/wk (or some fraction of it, depending on energy levels) at All Souls Anglican Church, Leichhardt as a lay ministry assistant. I had energy on Sunday and enjoyed meeting new people. We're looking forward to getting to know and be part of this community at greater depth, as well as trying to reach out to the local area, particularly to those in the 20-30 somethings. If you're looking for a church around Leichhardt, feel free to drop in on a Sunday (10.00 am or 6.30 pm, cnr Norton and Marion Sts).
We've been thinking recently about how it's important for the cancer to not become the centre of our lives and routine. Life is a gift and staying healthy is a good aim, but is not the most important thing. More important is continuing to grow in our love for God and those around us.
For those who pray, we continue to appreciate and thank God regularly for your support. Here are some suggestions.
Give thanks:
• For continued improvements to breathing and the reduction in the growth.
• For new opportunities to work and serve, especially for the community at All Souls, Leichhardt and what God is doing amongst them, which we'd love to join in on.
• For unexpected acts of generosity and support from a wide range of people.
Pray:
• That the treatment would continue to reduce and remove the tumour with minimal and manageable side-effects and no further reactions.
• That as we enter new contexts we would both have energy to keep caring for one another and strength to build new relationships of trust and grace.
• That our focus would remain on the primary things (loving God and neighbour), with secondary tasks taking their appropriate place.
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