(Un)common Sense

From time to time, you have those moments where your life changes massively in an instant of time. Yesterday was one of those days.

The moment I was told I wasn’t allowed to drive any more brought back memories from my teenage years of being grounded – feelings of resignation as the sentence was delivered and my fate was sealed. This wasn’t a week-long teenage sentence however, my grounding was going to last for at least a year, maybe longer.

And the reason for my grounding? The CT scan in mid January showed a 5mm growth had developed in my brain since my last CT scan in September. Cerebral tumours are considered to be a possible cause of epileptic seizures and according to page 34 of the NZ Transport Agency (NZTA) guidelines on fitness to drive, “…driving should cease for a minimum of 12 months…or in cases of cerebral secondary tumours (e.g. from lung cancer), driving should cease for a minimum period of 3 years following treatment.” This is kind of a big problem, due to the fact my job involves me driving around the city.

Treatment for brain tumours usually involve surgery or radiation therapy, neither of which is ideal for your brain but hey, neither is cancer. The oncologist has referred me to the radiosurgery department of Dunedin Hospital which is the only place in NZ that performs a special kind of radiotherapy called Stereotactic Radiosurgery (SRS). SRS basically is like an advanced form of radiotherapy where they deliver a higher dose of radiation but in a more accurate method than traditional radiotherapy. It is commonly used for brain tumours due to its reduced risk of ‘collateral damage’.

The good news is that my lung tumours are still decreasing or are stable, confirming the results of the chest x-ray I had back in November. The largest lesion in my lungs is now around 13mm, a lot smaller than its June peak of 20mm. The drugs still appear to be doing their job handsomely on my lungs, however drugs are less effective on the brain due to its biological difference to the rest of the body I’m told.

Ironically, this is not the first time I have been forced off the road for an extended period of time. Going back 12 years to when I was 18, I was disqualified from driving for 3 months due to my lead foot and penchant for ignoring speed limit signs. Back then I was suitably gutted but understood the sentence fitted my crime – fast forward to today and I feel decidedly less accepting about my new sentence. However, life isn’t fair and we should get used to it. Or so they say.

All is not lost however. My employer has been very supportive of me throughout my entire journey and have said they will continue to support me with this latest setback. This is a great relief for me and my family and I am truly grateful for the support. The finer details haven’t been worked out yet, but I am confident we will find a win-win solution to the situation. And besides, I don’t need to worry because I have given the burden over to God and I trust he will bring good out of my situation.

So, my adventure continues. Here’s to the future and all the promise it holds.

David

Just a quick update on the cancer situation – I had one of my regular catch ups with the oncologist today and he had the results from the chest x-ray I had last week. The radiologist’s report said the largest spot in my lungs was 10mm in size which is an improvement from the last scan which showed the largest spot to be 14mm and almost half of the size of the largest spot at the March CT scan.

The oncologist said we should wait for the next CT scan in Auckland to ‘compare apples with apples’ due to the higher detail level of the CT compared to the x-ray but I’m very happy with the ongoing reduction of the cancer nodules 🙂

It’s only a matter of time now…

Since I started taking the new ‘wonder drug’ Dabrafenib, many people have been asking me if it has been having any effect on the cancer. All I could tell them was, “Sorry, I don’t actually know”.

Until today.

On my visit to the oncology department at Auckland Hospital I was greeted with the 3-pronged good news that was the results of last week’s CT scan: No new nodules. No growth in any nodules. Some nodules had even decreased in size. 

Dabrafenib 1, Cancer 0

The nodules in my lungs had decreased in size by around 20-25% on average and the oncologist said he had not seen such a good reaction to the drug in such a short time of taking it (6 weeks).

Can’t wait for the next scan in around 3 months to give him more to be amazed about.

See you all again soon!
David 

Today marked the start of my second 3-week round of the melanoma ‘wonder drug’ Dabrafenib. The last 3 weeks have been interesting as I have started on my course of medication without a great deal of knowledge about the possible results (or side effects) of the drug.

Many people have asked me about the side effects of the drug – fortunately there hasn’t been anything major but there have been some interesting things:

• Joint pain – It started in my knees after a few days of taking the pills, an ache like you would get if you went for a 5km run after having done no exercise for years or like if you had played a game of rugby and had some good tackles around the knees. The pain in my knees went away after a few days but spread to my ankles then wrists, hands and fingers. It felt similar to RSI in my hands and at one stage my thumb felt like it had been sprained but again it went away after a few days.
• Strange things on my face that look a bit like small warts
• Headaches – these have gone away now but were there for the first couple of weeks

I recognised this as another one of the possible side effects touted by the oncologist at my last visit so I asked him if he was also on the ‘wonder drug’. He said he was on his 31st round of the drug which meant he had been on for almost 2 years if my mental maths served me right. 

He also told me he had been diagnosed with skin cancer all the way back in 2003 and had undergone operations at various stages but the cancer had spread to his lungs like mine had. 

The doctors gave him 5 years to live – here he was sitting here 9 years later alive and well (albeit a little pink). His cancer was now classed as ‘stable’ and had even regressed in places.

He could have accepted the verdict and counted out the rest of his 5 years but there was no way he was giving up that easily. He said he told the doctors where they could stick their morbid diagnosis. Nobody was going to tell him when his time was up.

It ain’t over ‘til it’s over.

The words were like music to my ears as the hospital pharmacist handed over a small brown paper bag in the waiting room of the Oncology Department at Auckland Hospital. A wave of relief swept over me as I took possession of the precious potential life-saving pills.

I finally had them.

I clutched them tightly as I walked to the car thinking about the transaction that had just taken place in the hospital. I could have been a drug addict participating in an illicit deal – a container of pills worth thousands of dollars concealed in a brown paper bag being handed over under hushed conversation in a quiet corridor. The only thing missing was the cash payment – but I imagine my years of paying taxes probably contributed enough to the health system to pay for the drugs.

The only catch – I had to come back to the hospital every 3 weeks to pick up a new batch of pills (as well as for a quick checkup on my progress) – a relatively small price to pay to have a piece of a brand new scientific breakthrough in the area of cancer treatment in my hot little hands.

When I left the Oncology department, I saw a lady standing outside clutching a brown paper bag identical to mine. I asked her if she had also received ‘the goods’. She had. Was this her first round? It was. We were instant drug-buddies.

She told me she had been battling melanoma for 4 years – longer than the ‘wonder drug’ had been in existence. She had gone through traditional DTIC-based chemotherapy and was fortunate enough to go into remission for 14 months.

But it had come back. And it did not respond to chemo this time. She was as happy as I was to be clutching the Brown Paper Bag of Hope. 

Sometimes people need hope they can hold onto. When the oncologist let slip with the ‘I’ word – Incurable – while talking about stage-4 metastatic melanoma during my visit, he was pronouncing a expectation of a negative outcome.

In the Bible, God says, “…the plans I have for you…are for good not for disaster, to give you a future and a hope.”*

In the eyes of the oncologist, I had been  ’doomed’ by my disease. I assured him I wasn’t going anywhere and my expectation was for a full recovery.

‘Til next time,
David

*Jeremiah 29:11 (NLT)

Well I could have called this blog post “The Good, The Bad and The Ugly” but there really wasn’t anything particularly ugly about today so I’ve gone with a relatively boring title.

Today’s visit to the Auckland Hospital Oncology department was a new chapter in my journey through cancer. They gave me the bad news first, followed by the good (not that I had a choice). The June CT scan had shown the cancer was still there. And it was bigger. And there was more of it. And it had resurfaced in my neck around the area where I was operated on in December.

Where’s the good news I hear you ask. Well, that test that I had to determine if I was genetically eligible for a new type of drug (B-Raf inhibitor) came back positive. This is great news as the success rates of the B-Raf inhibitors are a lot higher than traditional chemotherapy drugs – recent trials of the drug Dabrafenib have shown a 47% partial success rate and a 3% complete success rate, far higher than the 6% success rate with the 40-year old chemotherapy drug dacarbazine (DTIC) commonly used for treating patients with metastatic melanoma.

The next step in my case is for the hospital to apply to the Dabrafenib drug manufacturer GlaxoSmithKline for me to go onto their drug trial on ‘compassionate grounds’ as the drug is not funded by the NZ government at this stage. This process may up to 4-6 weeks although it could be quicker.

If there’s one thing doctors don’t generally like, it’s uncertainty. When the young doctor told me they really had no idea how effective the new drug might be in my situation, her body language conveyed a feeling of empathy for our situation. That’s why she seemed a little surprised when my wife Tracy told her how great the uncertainty was because it meant there was every opportunity for something good to happen.

Of course, what Tracy was alluding to was God’s ability to heal me from cancer completely. That ‘not knowing the outcome’ factor that could have brought fear and worry to our hearts instead brought excitement and expectancy about what God can and will do for us. 

Whatever the uncertain situations we face in life, we have to choose to focus on the positive outcomes and speak them out as though they were a done deal. Otherwise if we speak the negative outcomes over our situation we take ourselves out of the realm of the miraculous and become subject to the power of the ‘natural odds’.

So the future looks bright for me. How does yours look?

‘Til next time
David

I was thinking as I was driving home from the hospital this afternoon that there was something much worse than having cancer – worrying about having cancer.

What’s the worst cancer can do but take your life. Worry kills you every day you’re alive – if you let it.

A while back a guy called Jesus gave this great quote, “Don’t worry about your life, what you will eat or drink or wear…who can add a single moment to their life by worrying?”* The fact is, God cares about us deeply** – we just need to give him our burdens and not hold on to worry about the unknown.

The medical oncologist I visited today gave me basically the same story as last week’s consult with the surgical oncologist but with more detail about drugs and how they worked. He also said the B-RAF inhibiting ‘wonder drug’ had mixed results and didn’t have a long-term effect in most patients. He also said that the list of chemotherapy drugs used to treat malignant melanoma was a lot shorter than those used for treating other cancers and that the main drug used was effective in only 10-15% of cases.

Heavy stuff.

I asked him why he got into oncology – surely there was another field of medicine with a higher probability of patient cure? He said he just wanted to keep it real.

I think deep down he wants to smash cancer into little tiny pieces as much as I do.

So while he waits for scientists to come up with new wonder-drugs, he will persevere with treating people at the coal-face with drugs that have limited ability to cure cancer. The science (and mathematics) of cancer treatment is average at best. He has the unenviable task of being upfront about the odds while trying to still get people to hold out hope that they will be one of the lucky ones.

Melanoma, I’ve been told, can be quite unpredictable – it can grow quickly and regress just as fast. Another CT scan has been booked in June so they can see how much the cancer has spread (or not) since the last scan in March. This will also give them time to get the results of the B-RAF testing so they know if they can give me the B-RAF inhibiting drug.

In the meantime I’m going to continue on with my life and not let worry’s what-if’s rob me.

David

* Matthew 6:25-34
** 1 Peter 5:7 

Had a phone call on Friday afternoon from Auckland Hospital asking me if I could come to the Oncology Department on Monday afternoon (28th).

Obviously I said yes, but I was amazed at how quickly I was able to be seen – I was originally told at the Wednesday consult that it could be a month before I got to see an Oncologist due to their high waiting list. 

So more good news for me (yay!). Will keep you posted on the outcome of the meeting.

David

P.S. Thanks to everyone out there who is praying for me – your support is greatly appreciated