Back on the Clexane (Oncology update 2.1)

One of the downsides of a portacath being reinserted into me is that I now am back on prophylactic Clexane to keep me from thrombosing off my veins again. The dose is lower this time than the last time as I was on a treatment dose of 90mg per day (1mg/kg for the med geeks), I’m now only on 40mg per day (0.5mg/kg). This means every day, at the same time, I have to inject myself. Clexane is quite a ’stingy’ drug, the needle itself is only as sore as needles will be, but the injecting process is the bit that is the worst. I also am slowly starting to accumulate bruises on my abdomen, an unavoidable side affect of injecting an anti-coagulalent into your fat.

In other news, I’m now officially starting chemotherapy on Friday, the 27th of November, which is 13 days away from the writing of this post, so the countdown of feeling ‘well’ is now on.

It makes me want to savour being well for as long as possible.

Portacath Carnage

Monday this week was the day I got my portacath inserted for the second time. It was my 4th general anaesthetic in the last 12 months. The last one I had was put in in December last year, but thrombosed up the IJV by February, after my 2nd round of chemo. This rendered my alternating arms as chemo targets for the remaining of the rounds.

This time they inserted the portacath on the left side rather than the right side, as the right IJV was difficult to visualise on my most recent CT scan. Interestingly, when we dressed the wound this evening, the insertion in the IJV is much higher up the neck than the last one. It will be interesting to see if this becomes an issue, because I’m already noticing the fact that it is pulling on my neck much more than the last one.

Portacath wounds - Note the scar on my right chest from the 1st portacath.

Anyway, the whole thing serves as reminder as to the path I’m about to walk down. It brings home the reality of the fact that I’m about to hit more chemo, and the next little while will at best, bearable, and at worst, miserable.

Heres hoping its the former rather than the latter.

One Year On…

I’m currently going through a process at the moment of often saying “This time last year..” and then reflecting on what actually was going on at this time last year.

The one year milestone is not necessarily an achievement, but more a moment to stop and reflect on the somewhat unpredictable detour life has taken in such a short 12 months. Having said that, the recent news in my life means that I might actually begin to measure achievements in years, or months for that matter. Either way, The week beginning Sunday the 8th of November 2009, maps back to the week beginning on Sunday 9th of November 2008, a week where everything changed, or began to change, in a direction that cannot be considered for the better.

Sunday = The day where something ‘wasn’t quite right’. After a mammoth meal the night before, my stomach was up to, what at the time, seemed to be a fairly routine grumbling about the quantity of food I ate. I stopped eating, lest I aggravate the belly below, and somewhat disconcertingly, stopped bowel motions, the latter wasn’t intentional.

Tuesday = The day where 3 days of stomach pains began to intensify. Pains would come in waves anywhere from 5 to 30 minutes apart, lasting no longer than 30 -60 seconds long. The day culminated in a nice bout of vomiting in the evening. This was the trigger point for Hannah and I to head to the hospital. Medical alarm bells were beginning to ring in our head, and the fact that we were due to fly out of the country on Friday was also at the back of our minds.

Friday = after a few days of ‘conservative management’ which is medical speak for ‘have some Panadol and lets see what happens’, the pain was significantly worse. Repeat abdominal x-rays showed barn door signs for bowel obstruction. The Oxford Handbook of Clinical Medicine (OHCM) says under the heading ‘Bowel Obstruction’ – “Never let the sun go down on a bowel obstruction”. And so, as the OHCM says, we followed. Surgery was 3 1/2 hours long, and what might have been an atypical presentation of an appendicitis became a full-blown right-sided hemicolectomy.

Thursday = 6 days post op: We got the news that the tumour that had caused the obstruction was indeed an adenocarcinoma of T3N2M1 Histology. Almost as bad as it gets.

Friday (21st Nov) = 7 days post op: Incidentally my 28th birthday, I was discharged.

And so… in that short space of time, in the view of the majority of people, life took a turn for the worse.

I however, prefer to think about it differently. Life didn’t take a turn for the worse, it took a turn down an unexpected route. I am the first to put my hand up and say it certainly didn’t take a turn for the better, but I feel that to say it took a turn for the worse might be a little melodramatic!

There are two reason’s I say this. They are:

1. Death is nothing to be feared (although arguably the form death might take could be feared). We all die, it’s an inescapable fact of life. Whether Muslim or Christian, atheist or Buddhist, Caucasian or Asian, we die. How we approach this fact (as with all things in life) will determine how we respond to it. By not fearing it, we empower life, which is the part that comes before death. Many people do not fear death for many reasons. For me, faith in Christ is an integral part of that reason, and it is through my faith that the ‘alive’ part of life becomes empowered.
2. Life is actually at its most interesting when there are mountains to climb, challenges to approach, and valleys to be descended (and ascended). The previous year where medicine has been sidelined in my life is proof to this fact. I NEED something to fill my time, I need challenges in my life to overcome, I need to create meaning.

It’s this final point which is pivotal. Life by itself will no doubt, by default, fall into a repeating pattern of routine, which, for all intents and purposes, lacks meaning. Meaning in life is not stumbled upon, that’s an illusion sold to us by Hollywood. Meaning is created. We have the choice to create meaning in our life regardless of what our circumstances are.

I’m dying of cancer.

But I’m choosing to create meaning in that.

Christ enables me to create that meaning; on my own strength I would fail.

Again, the final point is pivotal.

So when I reflect on ‘This time last year’.. I reflect on not why, but how, how I can create meaning. This is why life has only re-routed, instead of taking a turn for the worse.

It’s an interesting route to say the least.

Thanks for Listening.

Life’s Not Fair!

Given the set of circumstances I am in, I often find myself saying to myself, or to God for that matter, ‘It’s not fair!’. There are many reasons that go on inside my head why this isn’t fair. An example might be that there are criminals who live a life of crime who survive into their old age, and yet here am I, potentially dying at the age of 28 (soon to be 29). I thought I had a lot to offer the world. I thought that I was going to to be able to become a doctor, and use my skills as such in some of the poorest places in the world. I wanted to bring justice where there was none, I wanted to bring hope where there was oppression, I wanted to show the world that the way it is doesn’t mean it has to be that way, that WE can make a difference and bring about change. I wanted to do all these things with my life, to make sure that my legacy was one that improved the quality of life of others.

 

But now I am dying and these things will never be fulfilled….

 

And criminals rape, they murder, and they rob. War criminals commit genocide and human rights atrocities around the world, and they all get to live into their old age, often with no justice for their victims.

 

How is that fair?

 

…. But then I remind myself why it is completely fair.

 

Two MILLION people were killed by the Pol Pot regime in Cambodia; Children are still being born in SE Asia with deformities because of Agent Orange dropped by the US; 4000 children under the age of 5 die everyday from pneumonia; People in this country and around the world are killed daily by drunk drivers; a two year old toddler falls into a drain in west auckland and drowns; a 22 year old university graduate from otago is stabbed hundreds of times by her boyfriend; thousands of people EVERY DAY die from cancer around the world.

 

Victims from the Pol Pot regime in Cambodia

 

How am I any different from these people??… What makes me any more special that any of these people that die from injustice everyday?

 

I’m Not!!

 

We live in a broken world where crap is part of our daily routine. Very often in the West, we are immune from a lot of that crap, and we forget that it happens. And when it happens to us?… We cry foul….

When I remember my place in this world, which is amongst the broken, then I realise that it might FEEL unfair, but thats just me being selfish. Shit happens in this life and we just get all moody when it happens to ourselves instead of others.

Perhaps instead of dwelling on our own unfortunate set of circumstances, we would do better to be dwelling on those of our neighbours, our friends, our families. Perhaps we should be seeking to be the answer to THEIR prayers and THEIR needs, rather than wallowing in our own sense of self pity.

 

I’m pretty sure that is what Jesus would do….

 

In the process of all this, I found peace with the fact that I’m dying…… Interesting…

It’s amazing what a bit of perspective will do.

 

Thanks for listening.

Trainee Intern Year

On Friday, I attended the 2010 TI year induction session. It was a little weird, this time last year I attended the 2009 TI induction session, thinking that 2009 was going to be the last year of medical school. Its interesting how quickly things change your entire life. It was only 1 week after that session that I started to get a stomach ache, and only another week after that that I had surgery, and then another week again where histology results confirmed that it was cancer, with only a 40% survival at 5 years.

In the past, I have often reflected, usually around birthdays or the new year, where I was the year before, and where I might be 1 year in the future. Never, with any of my reflections, did I even come close to predicting what happened in 1 weeks time this time last year. To go from a fully functioning person, with a future ahead, plans of travel, dreams of medicine, kids, grand-kids, to fighting for my life with cancer. And then, 1 year on, to be told that cure is no longer the goal of any further treatment.

It makes you realise just how fragile life is, how just in a blink of an eye, everything changes. Most of us, of course, don’t think these things will ever happen to us. That is exactly how I thought 1 year ago, yet for reasons beyond my control, I am now contributing to keeping the average life expectancy from getting too high.

Of course all of this talk about how none of us know the future, and how we should seize the day, make the most of life, live life to the full, etc. etc. seems a little unhelpful, and a little too cliche for my liking. But these are the phrases often repeated when such circumstances as these are reflected on. I’m not convinced that I have wasted away my life, I don’t feel as though I have regrets, I don’t believe that my life could have been lived differently. I am actually quite content with what I have achieved and how my life has turned out.

Rather than regretting or lamenting the past, what I lament, is the loss of my future. I’m a person who needs something to achieve, something to look forward to, some direction or plan for where I am going to.

 

Cancer has stolen that from me…

 

And that guts me to the core…..

 

And so, I have decided, that if cancer is going to have the last word to say in my life, I’m not gonna wait around doing nothing while it slowly kills me. I’m going to hit my TI year next year, chemo in hand. I’m going to make my best effort to finish my TI year, graduate with the hardest earnt degree of my life…. or die trying.

The medschool has been incredibly gracious and will accommodate me and my likely adhoc attendance to the best they can.

Five years ago, God made it clear to me that medschool was where my future lay and it was He that set this path in motion. It’s hard to know what God is planning now, but I see no reason to let cancer be the reason I don’t fulfill this calling.

I will follow God’s calling to best of my ability…….. even if it kills me.

And clearly for me, these are not idle words.

Thanks for listening.

Baking, and all that Jazz..

It has been incredible over the last week to see the support that has come from all corners of the earth. Most of it has been in the form of well wishes, with the occasional taking the form of some other things. Hannah and I have been deeply moved and touched by all the support we have received. We acknowledge the fact that there is very little that most people can do at the moment, especially considering that I am as healthy as I have ever been at the moment, so we are not in any kind of real physical need.

One such example of this support has been baking!! Of course, anyone who knows me knows that baking is definitely the way to my heart. Hannah managed to win my heart through just this avenue (of course there were other simultaneous avenues as well).  Today’s blog goes out to Michelle Kennedy who brought round a cake of which she said I would not be able to guess what it was till I cut it… She was right!!

I’ll let the results speak for themselves. Good on ya Michelle.

The Cake

The Cake

Original Intentions

When I started this blog, it was initially meant to keep people up to date with how I am going with my chemotherapy whilst I was out of action for the year. The original intention still remains, however, the expectations that I started with have changed. Even though my odds of survival were never great (40% at 5 years), there was somehow at the back of my mind the notion that I would beat those odds. However, as statistics do in their strange way, they have proven that there is a basis for such figures as I am more or less relegated to the 60% non-surviving category.

Now, as I enter a new phase of the journey with cancer, this blog will fulfill two purposes: the original one to keep people up to date with how I am doing, and a second one, to provide some kind of creative outlet that documents my journey that maybe months long, or a few years short. I’m not sure what form this outlet will take, it’ll likely be musings, thoughts, and experiences along the path to my eventual demise.

For those that know me, I’ve never been one to be particularly private about stuff, and I see no reason to be so now. From what I can tell, most people seem grateful that I can share my experience with them. Some people will no doubt not want to hear about it, which is fine, whether you chose to read this blog or not is up to you. In my experience though, those that embrace the hard things in life are the ones who flourish the most, including the hard things in other peoples life. I don’t write this blog for sympathy, or to garnish attention, but to hopefully provide insight into a dying mind and soul, and to allow those who want to journey with me through this to be able to do so.

Finally, my faith, which is integral to my identity and purpose, has never really featured here much. This is likely to change. Knowing about your death is something that helps you re-prioritise things. My faith always has been, and always will be a priority in my life, but I’m chosing to engage with it on a more public level because it is issues of life and death that raise these kinds of topics to the surface for discussion.

Thanks for Listening.

Oncology Update 2.0

Well, I would love to begin this post with great news… unfortunately I will begin and end it with really bad news. Two days ago I had my oncology appointment and was given the results of my 3 month follow up CT scan after my last one showed an enlarged node.

The results are as follows:

• The existing enlarged node is now at least twice as big, from 9mm diameter to 23mm diameter
• There are multiple new nodes in the aorto-caval region, running up the aortic chain that are significantly enlarged. These nodes are particularly large vertically, up to 4 or 5cm in length which can be seen on the coronal section of the scan.
• One further small node of 4mm in the sacral region of unknown significance that was not there previously.

These results are pretty much as bad as it gets. This is all recurrence that has occurred within 6 months of the first line of chemo, which makes it even worse. This is considered a rather aggressive recurrence of the cancer, and the goal of further treatment is no longer cure (although still a very remote possibility), just elongation of my life.

So, the plan from here initially considered possible surgical resection of the nodes, but that has since been ruled out, as there is unlikely to be any benefit gained from surgery when weighed against the risks. Chemotherapy will restart again in the next few weeks, once I get a portacath reinserted. This will be a different regime than the last one, and I will loose my hair on this one and look like a proper cancer patient!!! (I had so many comments on how well I looked last time, I think it was cos I kept my hair). The portacath of course means that I will be back on daily prophylactic clexane injections since I am now officially a clot risk after the last IJV thrombosis.

The depressing part of all of this (apart from the fact that I’m looking at my eventual demise) is that I am probably the healthiest and best I will be right now, and its likely to be all down hill from here. I have been really appreciating all the support I have had from everyone over the last few days. The next phase of life will be interesting to say the least.

Jared.

Philippines

Finally, the last leg of our trip was in the Philippines. This part of the trip was 7 days spend in Panabo, about 1hr north of Davao, the biggest city on the Island Mindinao, which is the biggest island in the Philippines (did you catch all that?).  This was not a travel and be a tourist trip as the rest of our travelling had been. I have visited this area a number of times over the past 10 years, including a 3 month visit back in the summer of 05/06. The original intent was for Hannah and I to only spend a few nights there as a visit and to say hi to old friends. However, this changed as we found out that some other friends where planning on doing a short term trip there. We decided to extend our stay for a week (they were there for 2 weeks) and join in on the activities!

Largely, our time involved working with kids, putting on feedings, and preaching/sharing. The feedings were in areas of very high poverty, where the children were not always guaranteed a good meal each day. I also had good opportunities to share with everyone how my health has been doing, as they had heard about it, but not in detail. They have been keeping Hannah and I in their prayers over the last year, which is always encouraging.

Getting the food ready to feed the kids.

The 7 nights here were the longest we had stayed in a single bed for our entire trip, so it was nice to settle down somewhere for a bit, but I definitely had the travel bug again by the time we had to leave. We then hit Bangkok with a ridiculously short changeover of flights (we cut it real close) in Singapore, and 2 nights later began the 13th flight home to NZ.

Photos from the Philippines can be found here.

Laos

We spent 5 nights total in Laos. The original plan as per the itinerary was to hit southern Laos via Cambodia, but as time unfolded, it became clear that we had taken on a fairly ambitious timetable that was rapidly running out of time. So, in the end, we decided to take a plane from Siem Reap to Vientiane flying Laos Airlines. Laos Airlines incidentally are one of the few airlines in the world that keep their safety record out of the public eye….. hmmm….

We were told by an australian and british couple that we met in Hoi An, Vietnam, that Vientiane was not too much to get excited about, so with that in mind, we arrived at 8pm at night, and departed at about 7.30am the next morning for a 12 hr bus ride up to Luang Prabang.

The bus ride was officially the worst bus ride ever!! Two hours into the trip, we came upon a bridge that had dropped away at one side, which meant no buses or heavy trucks could get past. So… wait…. wait… and more waiting, for the bus doing the reverse journey occupied the next 8 hours of our day. at 5.30pm, we finally got on the bus heading north, about 30 min before dark. We were starting to make contingency plans just in case we had been left in the middle of the laotion jungle overnight! We made it into Luang Prabang at a bright 3.30am.

Elephant Riding in Luang Prabang

The next 4 nights were in Luang Prabang, which is a really nice little French colonial town in the middle of northern Laos. It was relaxed and scenic, one of the location highlights of all our travels. We went elephant riding with a company that rescues them out of forestry work and rehabilitates them, the first company we felt treats them properly. We ate, we slept, we wined, and we dined….. all chilled out and ready for northern Thailand, the next leg.

Photos from Laos can be found here.