I broke sixty rounds of chemotherapy.
The number seems somewhat surreal, as to imagine 60 continuous rounds of chemo is like trying to imagine a nightmare. Back to back, this is 300 days of continuous nausea, dry retching, and fatigue.
I’m glad these rounds were punctuated with some sense of normality, with some sense that I still have control of my life. I often see long stay surgical patients on the ward and wonder how they keep their spirits up, for whilst I get to have a reprieve between each round of chemo, they often do not. They often have months as an inpatient, two steps forward and one step back, its a different kind of patience needed to endure than the one I have had to develop.
People often remark to me how well I have done to achieve 60 rounds of chemo, but I’m reluctant to accept the accolades. I firmly believe that when people are given challenges, no matter how big they might seem, its an opportunity to rise to meet them. There are definitely those that still roll over and let life’s burdens weigh them down, I see them in the hospital regularly, but there are also those that defy belief, that in the face of adversity, in the face of misery, still meet life head on regardless of what is thrown at them
I couldn’t imagine in my wildest dreams of ever tolerating 60 rounds of chemotherapy, but somehow I have. It hasn’t been easy…
But right there is a lesson for life, if you give up, you will achieve exactly what you expect… nothing.
However if you keep pushing forward, even when it hurts, even if it seems pointless, you create purpose in the situation you thought was purposeless.
Sometimes purpose isn’t there to be found, its there to be made.
Sometimes purpose was staring us in the face all along and we forgot to look for it.
How have I got through 60 rounds of chemo? Because I can’t help but notice the purpose God has created in my life despite my circumstance.
Until next time….
I have now had 18 CT scans over the past 4 1/2 years.
The latest doesn’t bring the greatest of news. The liver lesion that has been shrinking over the past few scans seems to have stopped its response. The latest scan showed that it had increased from 10mm to 16mm over the past three months. Prior to that it was as big as 24mm, but had reduced down to 10mm over 6 months of chemotherapy. There is also ongoing slow growth in the retroperitoneal lymph nodes of 2-3mm per node per scan.
What does this mean?? Well, mainly it means that I am only just satisfying the criteria for stable disease. So for now, chemotherapy is continuing, but the next scan in 3 months time will very much be a green or red light for further chemotherapy. If there is clearly demonstrated non-response, my current treatment will likely come to an end, and if it is still stable, then chemo will continue.
If my current regime does stop, then there isn’t really any publicly funded treatments remaining available to me as options. The only possible new option is Avastin, but that isn’t funded in NZ for bowel cancer as it doesn’t change outcome, rather just the length of time until the same outcome. I’m not particularly interested in pursuing it in the private sector as it costs a ridiculous amount of money, and as far as I’m concerned, if it doesn’t change outcome, then the money would be better spent on other, more efficacious things (like vaccinating kids in the developing world for example).
All in all, what this basically means is that my disease is progressing as we all knew it would. The unique thing about my disease is that it is operating on its own timetable and not one that is easily predicted. Whilst population data would predict a 1 in 5 chance of being alive this time next year, that same data had the same prediction for me over the past 3 years. Its fair to say I am bucking the trend, but what it does mean is the future is unpredictable. It might mean slow progression, or rapid deterioration, its impossible to know.
The next scan in three months will be a cliffhanger.
Until next time…
The lack of posting as the chemo clock ticks on reflects both the busyness in my life and the feeling that by round 57, there isn’t too much to add that is any different from the preceding 56 rounds.
To be fair though, there has definitely been a change of late in how I experience chemotherapy. The nausea has worsened; the threat of vomiting that little bit more present.
In round 56, shortly after I received my 5-fluoro-uracil bolus, I left the oncology department with the sensation of something welling up in my throat. The conveniently located garden only 20 metres from the exit served well as a liquid deposit of my gastric contents. Its hard to say why the nausea is getting worse, but a likely reason is revealed in the numbers at the top of this post.
There is no doubt that chemo has a cumulative toxic effect. Irinotecan itself, one of the chemo drugs, is notorious for being hepatotoxic. Often people don’t even tolerate two rounds, yet I have been blessed (or cursed) with the ability to tolerate 57. As I move steadily on in my forward chemo march, through uncharted territory that no previous oncology patient has seen, there is a sense of foreboding when the future reveals itself as more of the same. I distinctly recall at round 20 that I really didn’t believe I had it in me to make it to round 40, yet somehow through distinctly short odds, round 60 looms on the horizon.
Whilst there are many saving graces that I can list in my life, all of which that make the journey worthwhile, there is no doubt that this marathon of cytotoxicity requires perseverance. It requires persistence at focusing on what is good in my life, and a patient understanding that sometimes your own life is not the sole point of living. Somehow, in the midst of a fortnightly struggle with a toxic yet ironically therapeutic treatment, the perspective of the small things and the hope in the large things break through in a subtle way; enabling me with the strength to keep going. It is when I forget myself and see the bigger picture that perseverance some how expresses itself in my daily life.
I don’t have an explanation why this works… but it just does.
Until next time…
This is a belated update of a CT scan that was done back in mid December. The reason for the delay has largely been due to waiting to find out it’s implications.
The scan showed ongoing stable disease, with further reduction of the hepatic lesion we noticed on PET back in May last year. The retroperitoneal node has increased by about 2mm, but within the margin of error, and there is some questionable new lymphadenopathy around the superior mesenteric artery and the inferior mesenteric artery of unknown significance. It is called unknown significance because it could be reactive, or it could be malignant, and only time will tell which it is.
The implications are that because this is disseminated disease, surgery would not realistically be an option. Surgery is largely reserved for localised focussed disease, and would likely cause more problems than it would solve in the current situation. This doesn’t mean surgery is off the cards permanently, as with all things, there is always ongoing review, but with all things being equal, surgery is unlikely to present itself as an option again except in a palliative setting.
So the plan for the time being is ongoing chemotherapy until the cancer stops responding to it. The rounds have been progressively getting rougher, so at some point toxicity will come into play as well. My next scan should be around mid March, which is fairly soon, and as always will help direct the next 3-6 months of my life.
Until next time…
Fifty four rounds of chemo can give you pause to think.
When I’m sick with nausea, when my energy limits me to movement from the bedroom to the bathroom, when my head is in a fog of dysphoria, sometimes I wish that this wasn’t my life.
As much as I have accepted the circumstances of my own life and long since come to peace with its outcome, this doesn’t mean I have moments when I wish it was different. I guess its part of what it means to be human, hoping for a better future, hoping for an escape from life’s present miseries. Perhaps the recent acquisition of our first home has helped to make me wish things were different now that I am getting a taste of what the future might have been. It seems ironic that I make plans for the longer term future, acknowledging that the shorter term outcome is by far the more likely. It is almost like a cruel game of dangling the carrot, but always keeping it just out of reach.
Whilst these thoughts might rattle around my head at times, they cannot linger for long. Unless I am blind to the world around me, I am quickly reminded how good the life I have actually is and how blessed I am despite my circumstance. I may not be able to boast good health, but I’m well enough to continue to work full time between 54 rounds of chemotherapy. I have an amazing wife who journeys through this pain with me, enabling me to face it head on despite the fatigue. My life is full of people who support and care for me in various ways. I actually couldn’t ask for too much more.
I also see patients who suffer through far worse than I have ever had to, I see some die through cruel twists of fate and circumstance that might see someone else live. I see pain that I can’t imagine, both physical and emotional, in the souls of those I treat and the family around them.
All of this gives you pause to think….
Our suffering often seems so great to ourselves, a giant tree that is only so large because we stand right in front of it, blinding us from the even larger trees in the forest that stand before others. When we take a step back from our tree and see the context in which we live, it makes it so much harder to complain. Our tree is never as big as it seems when seen in context. And when we begin to focus on other people’s trees, their suffering instead of our own, all of a sudden the tree that seemed to loom so large begins to appear smaller than we thought.
If there is one thing my life’s turn of events have taught me, its that focusing on others instead of me removes myself from the picture. I realise my life is only one of many lived on this planet, and whilst I will die young, I will die blessed with the life I have been given. Hopefully, in return, I can bless others with that same life rather than focussing on my own. It is ironic that through having an ‘others’ focussed approach, I find the peace required to deal with my own circumstance.
Life was never meant to be lived with us at the centre, that only brings misery, self ambition, and loneliness. When life is lived with others at the centre, that is when we find community, friendship and love…. it sounds really soppy, but it works…
Until next time…
As the year draws to a close, I can’t help but pause and reflect on the year that has been, the happiness of hope, the pain of despair, and a multitude of ups and downs in between.
The year started with what was perhaps the most hopeful we had been since my diagnosis, that I might actually survive this thing called cancer. The offer of surgery, specifically a retroperitoneal lymph node dissection, was perhaps the closest we had come to some sort of outcome that wasn’t an inevitable demise related to my current predicament. The surgery was six and a half hours, followed by 10 days of recovery as an inpatient. I had to take 3 months off work in order to recover although in retrospect, I could have gone back 2-3 weeks earlier than that.
The anticipation and hope of the new year was shattered in May, a follow up PET scan that cruelly removed the carrot that had been dangled in front of us. Just as we started to believe we could have a future, the harsh reality of my mortality was a rude reminder that didn’t need to be made. Our dreams and plans, that we had been tempted to make again, came crashing down with the news the cancer had returned, and this time in my liver. I remember going back to work, feeling utterly despondent, wondering why I was there. A deep disappointment had settled in that took a few weeks to shake. We were back in the place we were before, perhaps even worse given that the cancer was now in my liver. As routine was re-established, the new revelation was slowly integrated into life again as I restarted chemotherapy.
In amongst this, we decided to have a decent holiday, with three weeks in Italy. This was easily one of the highlights of the year, a festival of food, history and art. I gained a few kilos in weight, only to lose them rapidly with a bout of gastroenteritis at the end. In truth, a decent gastro bug is far more tolerable than chemotherapy, so I didn’t mind the net loss of weight that resulted from our travels.
On the professional front this year, I was informed in August that I was to be a nominee for the NZ Junior RMO of the year award. I received an email whilst in Italy advising me that I had actually won this award! I felt incredibly humbled and privileged, especially in the context of the ongoing saga of my health. I went to Perth in November for a conference where I was also the NZ nominee for the Australasian award, which went to a girl from South Australia. Beyond this I was also kindly awarded ‘best guest lecturer’ by the third year medical students for whom I had lectured earlier in the year.
Coming back to the real world after Italy was a slightly surreal experience surrounded by TV cameras and moves into a newly purchased house. We had bought a house just prior to going on holiday, and had our move in date was planned for 5 days after we were back from Italy. On top of that, 20/20 had approached me to do a follow up story on the one they did last year. This involved two weeks of filming around when we shifted and then aired in November. We received overwhelmingly positive feedback from the story, which we thought was very well put together by the team at TVNZ. The days immediately after the show elevated Hannah and I to pseudo-celebrity status amongst colleagues, friends, and strangers.
The thread that ties the year together has been faith. Not faith in healing, but faith that God has something bigger and better planned than just my life. In the context of this world view, the events in my life are only a trivial quiver on the strings of eternity. My ongoing work at Auckland hospital gives me an insight into the suffering of others, and at the end of the day, I have been blessed with far more than I deserve, and I will be forever grateful that I have got to experience 32 Christmases on this Earth. There may not be a 33rd, but I am okay with that. Finding peace in my mortality has then freed me up to live my life, even though it is short. My life is not consumed with trying to stay alive, it is consumed with living the life that God has meant for me to live; and that is to love others, to show His grace and to build His kingdom.
This Christmas I am thankful I am alive to enjoy it. Next Christmas is always an unknown, but it is Christ I give my thanks to that I am still here.
Until next time…
I have been slow to update, but the rounds continue. Since I last posted I had the dubious milestone of reaching the half century, then adding a few more to that total. Round 51 had the honor of punctuating an extensive course of manflu, which served only to elongate the recovery even further and giving me a few days off work in the process. Its hard enough just being a man, let along getting the flu, and when compounded with chemotherapy, its a triple whammy.
The most recent round of chemo has been one of the harder ones. The nausea was just that little bit worse, lasting just that little bit longer. It’s always hard to know from round to round if it is getting worse, or whether or not I’m just minimizing the effects of previous rounds in my mind as a coping mechanism. Either way, this round has certainly been a bit harder than previous.
Of course in the midst of all of this has been the change in living environment, and this has been a change for the better. Being out of the city, having silent nights to sleep to, and having a much bigger living abode are all adjustments that make chemo just a little bit easier. We have been in our new house for almost 2 months now, and it has been a real pleasure to live in.
So from here the next round will coincide with Christmas, which, as 2 years of tradition will dictate, means I skip a round. The next round will fall in the New Year sometime, and will be preceded by a CT scan later this month for which I shall update you all on.
Until next time…