Fifth scan good

I've just received the results of my scan earlier today and it looks like there has been no significant change in the primary mass since last time - excellent news! I still have the better part of a second year to go before they'll say I'm cured, but so far so good. I thank God for more of this wonderful gift called life.

Chemofog II

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.

Next scan...

...is booked for Tuesday 15th April, which is a day before the first anniversary of getting the first clear result (we missed the anniversary of the first encouraging result, which was a week and a half ago). The upcoming scan will be the fifth CT scan after treatment.

Whole days now go by...

...in which I don't think of cancer. Of course, I'm still within the two year period during which relapse is most likely and I signed forms acknowledging that I accepted the risks of chemo and radiotherapy, included in both is (ironically) an increased risk of cancer. Nonetheless, being sick no longer dominates my existence as much as it once did and for that I am thankful. I never wanted to let staying alive become the main game.

Vocal cord still paralysed

After my last speech therapy session, my speech pathologist was so impressed at the improvement of my voice over the last twelve months that she suggested I have another nasal endoscopy (camera on the end of a flexible stick stuck up my nose and through to the back my throat) to have a look at my vocal cords in action (or inaction, as the case may be).

Yesterday, I had just that. It was less uncomfortable than previously, but the result was still negative. According to the ENT surgeon, the minimal movement observed in the left cord seemed to be the result of my breath rather than any activity of the cord itself.

I was then offered more therapy and or surgery. The former would simply be revision of what I've already covered, so I declined. The latter would involve a half hour operation under local anaesthetic in which a small piece of plastic would be inserted into my larynx via an incision in my neck. This would push my paralysed left cord further over towards the "on" position, and, once adjusted with the help of a speech pathologist evaluating my voice during surgery, would hopefully give me a little more volume and endurance. I was open to this possibility, especially after giving a two hour lecture on Wednesday night and ending up very croaky yesterday. However, the surgeon warned that the benefits would likely be fairly small and suggested that unless my voice problems were significantly reducing my quality of life, it might not be worth the (small) risk of surgery.

When asked to assess where my voice was up to, I estimated that I now have about 60% of the functionality of my former voice, though this is adequate in about 95% of my life. I also think my voice continues to slowly improve (while leading services recently, many people have commented on my increasing volume and quality of tone, and my singing range has slightly increased). Therefore, we decided to postpone any further decisions until after another nasal endoscopy in May.

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.

Falsetto

One lovely gift I received around Christmas was the discovery that I can again use a falsetto voice. Once more, I can now join Bono in the upper registers (which, incidentally, was how I stumbled upon my renewed capacity).

My voice is still usually croaky in the morning or after much use, but the overall trend continues to be good. My speech pathologist is so pleased with the developments that I am to have another nasal endoscopy next week to determine whether some function might have returned to my paralysed left vocal cord.

Fourth good scan

My CT scan today went well. There is no evidence of any regrowth or new tumours. The residual tissue mass was slightly smaller again (1.5 by 1 cm). Praise God! I hadn't been particularly anxious until the last couple of days but this is another big relief. The only downside was a little more scarring in my left lung from the radiotherapy.

Next scan on Thursday

Having been away for a few weeks, I have now returned and am able to have my fourth post-treatment CT scan this Thursday in Newtown. The gap has been slightly larger this time (more like three than two months) because of Christmas and holidays. I hadn't been thinking about it at all until we returned on Friday night, but since then it started to grow again in my thoughts and prayers. Hopefully, nothing else has been growing.

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

A weighty issue

When my oncologist first told me I would be having radiotherapy of my oesophagus, one of the pieces of advice he gave me was to eat as much as possible in the weeks beforehand. My dietician said I ought to maximise my intake of protein, carbohydrates and fat (when was the last time your doctor told you to do that?). They were concerned that the damage to my oesophagus would make it difficult for me to eat and so I might lose a lot of weight. Since it was December when I was diagnosed, it was not difficult to follow their advice (especially with two very concerned families who liked to express their love by supplying us with lots of food, not the mention the many friends and members of our church family who also cooked us meals). As a result, I gained 5-10 kilos on top of my usual weight, putting me into the 'overweight' range, according to my BMI (Body Mass Index).

Radiotherapy did leave me on a liquids-only diet for a few weeks (and a water-only diet for a couple of days at one point. Even milk or very thin soup was too painful), but being tired and feeling unwell also greatly reduced my physical activity, so I never lost much of the weight I'd so rapidly gained.

Today, I remain a little above the 'normal' BMI, yet my oncologist has always been far more worried that I will start losing weight rapidly than he is concerned at my being slightly overweight. An article in today's Sydney Morning Herald might help explain his reaction: a US study has found that "being up to nearly 14 kilograms overweight reduces by 40 per cent your chance of dying from a range of common diseases and risks, not least because it improves your chances of recovering from surgery, injury and infections."

Yum.

One year on

On this day last year (at about this time), I was diagnosed with cancer. I thank God for many things: that I'm still alive (it really wasn't looking good for the first few weeks); for the love and support (and generosity) of so many people over the last year, particularly my wife Jessica; for a wonderful (basically) free public medical system in Australia; for the chance to reflect with a little more depth and urgency upon death, fear and hope (amongst other things); and for "new birth into a living hope" (1 Peter 1.3), which gives us so much to live for now.

Voice update
Yesterday, I saw my speech pathologist for the first time in a few months. She was very pleased with my progress and said at the end of my appointment that I am the miracle case that she tells stories about. After our first few meetings, she had expected I would need surgery to give me back anything like an acceptable level of function, but my vocal strength, endurance and range have all slowly grown each month as I've (usually) practised the exercises she has suggested. I can now hold a conversation without needing to explain that I don't have a cold. I can now sing again, at least a little and within a certain narrow range. Best of all, I can once more pray and praise God amidst his congregation, raising my voice to join in worship, which is, after all, what voices were made for.

The next step will be another nasal endoscopy in late January to determine whether any function has returned to my paralysed left vocal chord. This is unlikely, but my speech pathologist is curious, given my continued and unexpected improvement. If there is any movement, I will continue to see her to strengthen it. If not, I will simply sing as best as I am able in praise of the God who raises the dead.

[With] this poor lisping stammering tongue... I'll sing thy power to save.

- William Cowper (amended)

A reminder and brief update

Just a reminder to those who check this page that I post far more regularly (nearly every day) over at my main blog: nothing new under the sun.

No major health updates at the moment. I continue to regain strength slowly. I've taken up tennis and am trying to do more walking. I won't see the speech therapist again until December (though she was very happy with how my voice my going last time she saw me). Emotionally, I'm also still recovering, trying to rediscover the dreams and passions I had before getting sick took over too much of my world.

Thymus: why do I get sick more often?

Had my regular post-scan oncology appointment today and the professor was happy with the lack of change in my most recent scan. He did his usual poking and prodding and this time I was careful to not overreact and score an extra PET scan.

After steadily improving since April or May, my energy levels seem to have reached a plateau over the last couple of months. I have been sick with colds and the flu a number of times, and they have hung around longer than usual. This has reduced the regularity of my exercise. Of course, by 'exercise', I mean nothing more strenuous than a 30 minute walk! In any case, I found out today that there may be three reasons for the frequency and duration of these illnesses: (a) already being somewhat run down/still recovering in my overall level of health; (b) radiotherapy scarring probably means that my trachea is less effective at thwarting airborne pathogens; and (c) my thymus was also in the field of radiation. The thymus is a gland in the centre of your chest that plays an important role in your immune system. I didn't ask him directly, but it sounds like the latter two effects may be long term.

Although it is months since my first good scan, I have been acknowledging again to myself in recent weeks that I am very much still in recovery mode, physically and emotionally.