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.

Still all clear

After the delays mentioned in the previous post, when it actually happened the scan today was quick and uncomplicated. Apart from some more scarring on my left lung from radiotherapy, there was no significant change from my last CT scan. This is excellent news and a weight off my mind. Praise God!

Third follow-up scan

I was due to have my third follow-up CT scan a couple of weeks ago. My oncologist has been away and the imaging place where I've had all four CT scans had been engaged anytime I rang and wasn't returning emails. It's good to go back to the same place so that all the scans are done on one machine, so I persevered in calling them. Eventually, I made a trip in to the city to see what the story was, only to find the site closed up, the interior stripped bare and no signs or indication if this was a move, renovation or permanent closure.

So yesterday I organised to have my next scan closer to home, indeed just down the road at a medical centre associated with RPAH. And I managed to get an appointment for later today. So as of one minute ago, I've started fasting for the required four hours before my next scan.

Although I've had no physical reasons to think this one might be any different, the extra weeks of delay have added to my feelings of anxiety. I trust that God will be with me whether I am sick or well, but it's also natural to get a few butterflies. I'm glad that it will soon be over.

Crash II

Here are some pics of how our car ended up after our recent crash. The insurance payout has covered it well. Still sad to say goodbye, even if it was going to die of old age fairly soon.

Crash

Last night Jessica and I had another life-experience and another chance to enjoy the hospitality of RPA.

While driving home from church around 9.30 pm, we were coming down Booth St in Annandale towards the intersection with Wigram Rd at the bottom of the hill where Booth curves around to the right. A taxi was turning right out of Wigram and obviously didn't see us but proceeded to coast into our front left side. Thankfully, he hit our front wheel rather than the passenger door a metre or so further back. Jess and I were both able to get out straight away. After we had checked that the three of us were OK, he apologised.

The next vehicle to appear around the corner five seconds later was a police car containing two constables, who immediately took charge of the situation. Jessica was complaining of neck pain, so was taken to RPA in an ambulance and a neck brace while I stayed with the police and taxi driver to give a statement. The police investigation quickly decided that the taxi driver was at fault for failing to give way. His defence was that he was not at fault because he hadn't seen us. On the one hand, I'm sad that this will probably have implications for his job, but on the other, if this was more than an isolated error of judgement, it may be best for him to do something else.

RPA again
The police gave me a lift to RPA, where I found that Jess was waiting for an x-ray of her spine. By this time, my neck was also sore, so I joined the queue in emergency (it was a busy night). After I'd seen a doctor a few hours later (who had cleared me of anything more than muscle pain), I found that Jessica's x-rays had also cleared her. They kept her under observation until about 2 am when we could finally walk the few hundred metres home.

We slept in this morning (thankfully, Jess didn't have to work. She has accepted a new job a few days ago and is winding down in her old position) and woke up bruised and stiff, but better than we'd expected to feel.

RIP XOU219
Our faithful old '84 Corolla had to be towed away and is almost certainly written off. With only months of registration left, it had been unlikely to survive another year anyway. I tried to take some photos on my phone but there wasn't much light and they didn't work. The police took a number of shots, but I'm not sure whether I'll get to see them. Jess has to go down to the Glebe station tonight to give a statement (they decided not to interview her in emergency). This is the only image of the car I could find, from a holiday about a year ago.

We thank God for his protection. When one of the constables found that I work for a church, he asked whether 'the big fella' had let me down. I thought not. Things could have been much, much worse.
Map from Where Is. The crosshairs show where the accident occurred. We live down and to the right, on the corner of Parramatta and Missenden Rds. RPA (Royal Prince Alfred Hospital) is a few hundred metres down Missenden Rd, just off the bottom of the map.

PET scan clear

My PET scan at RPA today confirmed the CT scan from a week or so ago in showing no new cancerous activity.

Some people really don't like PET scans because you get strapped in place and can't move at all for about twenty minutes while you lie encased within a cylindrical machine that measures your radioactivity (after you've been injected with radioactive sugar). If you're claustrophobic, I imagine it could be quite distressing. I don't mind it (apart from getting an itchy nose) - an extra chance for a nap.

I discovered just a minute ago that contrary to what I said in my previous post, Prof Tattersal had not been planning on my having this PET scan until he noted a tenderness in a lymph node near my clavicle. I think I had just forgotten how uncomfortable a lymph node palpitation can be and flinched when he stuck his fingers into my neck. This also happened the first time he did it, but on subsequent times I was ready for it.

Yet another scan

I wasn't sure when I went to have my recent CT scan last Friday whether I would also need to have a PET scan (the second paragraph of this post explains what a PET scan is). I thought this would only be necessary if there was bad news, but having seen Professor Tattersal (my oncologist) on Tuesday, I found that he was planing a PET scan in any case. So I've just arranged to have it first thing Monday morning. I presume I will continue to have both scans every few months for the next couple of years.

Speaking of Professor Tattersal, I've really appreciated my times with him. He is always understated, has a sharp wit and a strong desire to make it into the Guiness Book of Records. He is also very geneous with his time and has made himself very easy to contact when needed.

At my Tuesday appointment, I asked how to minimise the chances of a relapse and he made three suggestions: (a) don't lose lots of weight, (b) exercise well (Jessica and I started a new exercise program a couple of weeks ago and are - amazingly - being quite consistent with it. We're starting slowly since I've lost a lot of stamina and strength) and (c) think positively.

As I was leaving, he also asked me to have a blood test "because you're here". It was disconcerting to go back into the chemo suite, even for a few minutes. There is so much pain and anxiety in that space. Even just sitting in a chair, I began to feel a little queasy in memory of past experiences. The nurses are very caring and competent, though the one taking my blood had trouble finding a vein (which didn't help my queasiness). Unfortunately, yesterday I received a call to ask me to come back in, since my blood had been misplaced. I'm just heading off there now. Another day, another needle.

Good scan!

My CT scan yesterday was fairly painless (no fiddling round to find a vein only to give up after too many attempts like last time) and even better, there was 'no suggestion of tumour recurrence seen'! In fact, the remaining mass has continued to shrink (they didn't give any measurements). So that was all good news. Thanks to those whom I know were praying (and to those who might have been doing so secretly) - and once again, an even bigger thanks to God!

Scan and voice

Tomorrow I will have my next CT scan to see whether anything has happened since the last one. If it is different, I assume I get the privilege of another PET scan. I'm not sure whether I will get the results tomorrow or Monday. Please pray that Jessica and I will continue to trust God as we await the outcome - and that it's a good one!

I also saw the speech therapist again yesterday and learned a few more things. First, I found that my left vocal cord is paralysed in a paramedial position (partially 'on', rather than fully 'off' as I had thought) and this is why my voice has returned to the level that it has (i.e. more than nothing, less than it was). Second, she very kindly invited me to a workshop she is organising for speech therapists to watch a world-famous voice teacher work with some of her patiences (one of whom will be me!). So I get a free consultation with a lady who normally charges over $200. The only price is that I'll have twenty therapists watching me as I do so. And third, I found that if I do end up having surgery on my larynx, this would involve the insertion of a bioplastic wedge to jam my left chord more fully on (rather than a collagen injection as I had previously thought). Compared to the injection, this sounds like a more uncomfortable procedure (a local anathestic while they cut your neck open; they need you awake so you can be testing your voice as they do it!); however, the injection needs to be repeated every few months, while this procedure would be permanent. Either option might only have a marginal effect on my voice (or none at all), though if I'm going to use my voice for a living, this could be worth it.