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.

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.

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.

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.

Update: 16th April

The breath of God has made me,
     and the breath of the Almighty gives me life.

- Job 33.4

Good news!
It has been a month since I had a CT scan that revealed the growth in my chest had shrunk to about a quarter of the size it had been in early December.

This morning, I had a PET scan at RPA Hospital. This involved being injected with radioactive glucose* and then being scanned to see where I was radioactive. The glucose is taken up into cells with high activity: the brain, liver, active muscles - and active tumours. The pattern of radiation thus reveals whether any tumours are active.
*Technically, radioactive tracer in a glucose solution, since the sugar itself doesn't undergo radioactive decay.

But my scan was clear. There was 'no evidence of viable tumour activity' . This means that the remaining tissue revealed last month on the CT scan is simply dead scar tissue. Praise God! This is what we've been praying for and the best outcome we could have hoped for after the diagnosis in December.

From here, I will continue to have tests every few months to check for relapse. If I remain clear for two years, the likelihood of it returning becomes much smaller. But for the moment, I have been spared. And for this, we are thankful.

I know there are many others who do not have such good news today, but who continue to struggle with illness and a variety of difficulties. Why have I been spared at this time? It is not a reward, but pure gift, like all life. We remain thankful for every day.

What has changed? In one sense, not much. I will still die sooner or later and I continue to trust the God who raises the dead. I still follow one whose path of faithful obedience meant suffering amidst a groaning and broken world. Health remains a good gift from God's Spirit, but not the goal of life. There are worse things than sickness and death.

Yet, of course, today's small mercy is worth celebrating: more life together with you; more opportunities to serve God, his world and his people; more time to tell of God's goodness to us all. I am looking forward to celebrating with friends and family, not having any more needles (at least until the next scan), and starting to once more think about the future beyond next week.

My health continues to improve after treatment ended two months ago. I have more energy and am able to eat most things. I am beginning to work at improving my vocal volume with the help of speech therapy. I have lost all my convenient excuses for avoiding the exercise regime that Jessica and I have been promising each other for years.

Thank you for all your prayers, love, cards, food, gifts, kindness and presence (even in spirit). We have really appreciated your company on this leg of our journey and look forward to more adventures together (hopefully for many years!).

At this milestone, we think it's appropriate to give thanks and celebrate God's kindness to us. And so, Jessica and I would like to invite you (and any interested others you know), who have supported and prayed for us, to a thanksgiving service. We haven't yet worked out any details, but we'd love to acknowledge that we are and remain recipients of undeserved grace from you and our heavenly Father. We'll let you know date and time soon.

Of course, we'd still love your prayers:
Give thanks: for so many things - I'm sure you can think of some!
Pray: for those who face disappointment and not joy today; for patience and discipline in trying to strengthen my voice; and that we will not forget the lessons we have learned.

Update: 13th April

PET scan next week
Just got a call to say that my PET scan will be on Monday morning 9 am. I fast for five hours beforehand (so that I'm ready to go really slow for a few hours...). This scan is to determine whether the residual mass revealed in my most recent CT scan is still active or is merely scar tissue. I get an injection of radioactive glucose (sugar) and sit very still for an hour. Sugar is picked up by cells that have been active (which is why I sit very still - so that as little as possible goes into other muscles), particularly the brain and active tumour cells. I then lie inside a large tube that functions as a 3D Geiger counter, measuring where radiation is coming from (i.e. which cells have been picking up the glucose). I probably won't get the results for at least a couple of days. I'll post an update here as soon as I know.

Speech therapy
In other news, yesterday I went to my first session of speech therapy proper and have been given a variety of amusing sounds to practice. I would have been really good at being a speech therapist before I lost my voice - I used to love practising silly noises.

Update: 29th March

Nasal endoscopy
I've just returned home from having a second nasal endoscopy. Not the most pleasant experience (although there are worse places to stick an endoscope, I assume), but second time round the results were not quite so surprising. It was a similar procedure back towards the end of November that first discovered my paralysed left vocal cord and which led to my first CT scan that found the tumour.

Options
This time, the result was the same: a palsy (paralysis) of the left vocal cord, most likely from nerve damage to the nerve that controls it. I have two options: speech therapy to help my right vocal cord compensate (more than it already is, since the gradual improvement of my voice since October is the result of this tendency); or a surgical procedure to insert a piece of plastic into my larynx in order to turn my left vocal cord permanently 'on'. Non-invasive procedures are nearly always better to try first, so I will give speech therapy a few months and see if there is any improvement before I let them take a knife to my throat.

Update: 22nd March

Taste and see that the LORD is good;
blessed is the one who takes refuge in him."

- Psalm 34.8

God is faithful in times of prosperity and adversity. We continue to be so thankful for all the good things we receive from his hand.

CT scan
Yesterday I had my first post-treatment scan (a CT scan) to begin to determine the effectiveness of all the chemotherapy and radiotherapy I received in January and February. The results were very encouraging. There were no secondary growths (i.e. the cancer has not spread) and the primary tumour had shrunk to about a quarter of the volume it was back at the start of December when I was first diagnosed (the only other time it was measured in a scan). On 1st December, it measured 35 mm by 30 mm by 25 mm but yesterday it was 25 mm by 17 mm by 16 mm - a very impressive reduction. The radiologist who reviewed the CT scan was also impressed at the comparatively minimal damage done to the surrounding area (esp lungs) by the radiotherapy.

However, yesterday's scan does not reveal whether this residual mass is merely scar tissue or active tumour. To find out, we need to wait another month to continue to allow the radiotherapy to have maximum effect and then I will have a second, different scan (a PET scan) to measure cell activity. More waiting - no wonder they call us 'patients'!

Side-effects
After finishing radiotherapy just over a month ago, I have been recovering from the various side-effects and feel as though I am well past half-way (though not yet 100%). I still have less energy than I used to and am still expanding the kinds of food my oesophagus can tolerate. For much of this month, I have been on a liquid diet but have recently been enjoying food with more substance.

Voice
My voice, though a little stronger than it was a month or two ago, continues to be quite different to what it once was. It is likely that this will be a permanent issue since the damaged nerve that controls my left vocal cord may never recover. However, with some speech therapy over the next couple of months I might continue to gain a little more volume. I am able to preach and give talks using microphones, but conversation in noisy contexts is very difficult, as is singing - a loss I frequently mourn.

Church
Apart from these factors, Jess and I have been well. We are both enjoying our work, as well as the extra time we've had to rest and recover while both being part-time. We are settling well into our not-quite-so-new church at Leichhardt and have started a couple of small groups for people our age, which have been very encouraging.

We have really appreciated all the generous support from so many: gifts, practical help, people willing to listen, and a constant supply of food and prayers. God has given us all we need and so much more!

Prayer
For those who pray...
Give thanks:

• for God's generosity towards us all: giving us life and every good thing, especially his son.
• for the love and support we have also received from church, family and friends in a variety of forms.
• for the good result on yesterday's scan, and how far we've come on this little adventure since the start of December.

Pray:

• that the remaining mass will be all scar tissue and not contain any active tumour cells.
• that while waiting for a more definitive result next month, we will be patient and thankful for each day, without anxiously grasping after an answer or deferring our lives.
• that I might continue to regain strength and would use this to serve the God who loves life.

Symptoms

What effects does the cancer have? How does it feel?
The direct effects of the cancer are sometimes a little difficult to distinguish from side-effects of the treatment, however, there are a few clear symptoms of the cancer itself.

Voice
The first one to appear and which ultimately led me to getting the scan that discovered the growth was that I lost my voice back in October. At first, I had put this down to stress from a number of sources, but after a couple of months, I thought it was time to get it checked out. My voice had almost entirely disappeared within a week and then gradually came (partially) back. By having a tube stuck up my nose and down my throat (nasal endoscopy), it was discovered that my left vocal cord is paralysed in the 'off' position. In order to make a noise, my right cord has learned to compensate somewhat and so I do have a small voice. Importantly, I am not damaging my voice when I speak, so please don't feel guilty about making me talk. Furthermore, the growth is not in my throat, it is in my chest.* The effect on my voice is because the growth compresses (or has possibly taken over) the nerve that controls one of my vocal cords. This effect may well be permanent, since the radiotherapy is likely to destroy whatever might be left of that nerve. However, with speech therapy I may be able to recover some more voice than I presently have. Unfortunately, I don't think I will ever sing again as I once did. This is one of the saddest things about the whole affair so far. Please pray for my patience in expressing myself with less noise and ease than I once had.
*There seems to be quite some confusion over this, with many people asking me about my throat cancer.

Breathing
A second symptom of the growth itself was that since it had partially grown into my left bronchial tube (near the base of my windpipe/trachea), less air was getting into my left lung. When combined with some mucus build-up around the site of the growth, this would leave me quite short of breath upon even mild exercise (walking up a few stairs, walking above a dawdle) and often coughing quite vigorously. This symptom did not really develop until a week or two after diagnosis on 4th December, though by the end of December when I started treatment, I would often wake up at night to discover that I was only breathing on one lung. It was the severity of this effect that led to my chemotherapy treatment being started a week earlier than originally planned. Sometimes, the coughing would also lead to coughing up small quantities of blood as the tumour would get irritated by all the air movement. Since beginning treatment, my breathing has rapidly improved and now I notice almost no difficulty breathing. I still cough up quite a bit of mucus, but this is more due to side-effects of chemotherapy attacking the lining of my trachea than to the tumour itself. Praise God for the rapid effectiveness of the treament on this particular symptom!
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