During this current admission I had a CT scan (that I mentioned in a the previous post) to assess where things are at with regards to my bowel obstruction and the current issue of obstructive Jaundice.
What I didn’t mention is what it found with regards to my cancer, and unfortunately, its not good.
There is significant progression of the liver disease over a very short period of time. The dominant large lesion is in segment 7 of the liver has doubled in size and there are multiple new lesions in the 0.5-1cm range throughout the liver, with existing lesions also increasing in size. There is also further development in the lymphadenopathy around the renal arteries and in the general retro-peritoneal area, including increasing lymphadenopathy around the hilum of the liver. The infiltrative disease around the liver could well be responsible for the biliary obstruction that I have, and may have been responsible for the duodenal obstruction as well.
Basically its pretty bad. I have missed three rounds of chemotherapy now due to the complications and hospital admissions over the past month, and that is likely to be a big contributor as to why my disease has progressed. However, it is of such rapid disease progression that my oncologist tends to think that it may have starting progressing under chemo, even thought my last scan was stable (and relatively recent).
So what does all this mean???
Well, basically it means I need to get back on to chemotherapy as quick as possible in the hope we can slow down the growth. If in fact regrowth was beginning to happen whilst on chemo, it suggests that chemo is losing its efficacy, and that means i’m starting to run out of options.
In the mean time I have to get past the current main issue, which is my biliary obstruction.
On Thursday I had my ERCP under a general anaesthetic and it unfortunately it wasn’t successful as they couldn’t get access to the ampulla at all due to the duodenal stent being in the way. This means that I have had to go for a PTC drain insertion best described in the video below rather than by me.
This procedure was due to go ahead on Thursday afternoon until I spiked a fever of 39.0 degrees. It was deferred and I was started on IV antibiotics in case this was choleangitis. Choleangitis is an infection of the biliary system and can be a very rapid onset sepsis and can lead to septic shock. The fever I had was absolutely miserable with rigors and lasting for about 5 hours. I haven’t had one since thankfully, and the thinking now is that instead of choleangitis, it was probably a septic shower as result of manipulation around the biliary system in the failed ERCP. Fortunately the latter as a diagnosis is much better than choleangitis.
On Friday I went for my PTC insertion under light sedation and they got as far as getting the drain into the duodenum via my liver. It was a difficult access just because of the location of the left lobe of my liver relative to my ribcage, so they weren’t able to get the stent in. The plan is to go back under general anaesthetic and put the stent in so that I have internal and external biliary drainage. I am currently biding my time in hospital until that can happen early next week and then all things going to plan start chemotherapy the week after that.
So as you can see, there has been a lot happening over the past few days, both in terms of medical management and developments, as well as the processing of the CT report and what that actually means. What it really means is that I am getting down the last ditch therapies now for treating this cancer, and it has established that if you give it an inch, it will take a few dozen miles with that liberty. What treatments are left as options are really speculative, and whether or not I will get response is equally as speculative. Hannah and I have processed this and understand that it means I am unlikely to make Christmas this year, and my time could be up sooner rather later as the decision to go palliative is getting closer and closer.
In someways this hasn’t been as hard to process as you might think, and I think that is in large part due to the fact that I have had the better part of 5 1/2 years with this illness to do this processing. It is however, a brutal shock back to the reality I face, as it has seemed like the past 6 months has been a holiday, as we have seen Elise’s first few months of adventures in this world. It has been an awesome escape from reality as we watch new life blossom…
But now the holiday is now over, and I have to get back to the business of dying. I plan to do that the best way possible, as not everyone has the privilege of anticipating their own end. So often people’s end times are full of regrets and catching up with bucket lists. I don’t have either of those, I am grateful for the life I have lived, I have been given extraordinary opportunities to embrace it in all its beauty, God has blessed me enormously. I plan to enjoy every last moment, savour its delight and its low times. It’s all part of the package.
Until next time..
A lot has happened since I last updated this blog. I have spent time in hospital and I have had all sorts of investigations.
Firstly, I don’t have a gastric ulcer, which was where I left things off in the last post. I had the gastroscopy, and it showed a perfectly normal looking mucosa lining my stomach. It did however suggest that the stomach and the first part of the duodenum are bigger than normal, so it was decided I should have a barium swallow to investigate further since I still had symptoms of pain, nausea, and vomiting.
The barium swallow showed a hugely distended stomach as well as the first 2 parts of the duodenum. The barium only partially moved beyond D3 (3rd part of duodenum), indicating that there was a partial obstruction at that location. We didn’t know how long or narrow that obstruction was though.
It was decided that using a duodenoscope, a gastroenterologist would get down to the obstruction and pass a cannula through it injecting contrast under fluoroscopy (x-ray guidance) in order the characterise it’s nature. An intrinsic obstruction might suggest stricture from radiation, or perhaps even adhesions from multiple previous surgeries. An extrinsic obstruction might suggest there was a lymph node or a mass pressing onto the duodenum from outside the gut and compressing it. It ended up being unclear, but it seemed more likely to be a radiation stricture than anything else, so a stent was inserted in order to open up that part of the gut again. This was all done under the same proceduce, although it was the second attempt as I didn’t tolerate the procedure well the first time under light sedation. The second time was done under a proper general anaesthetic.
That was done last Tuesday morning, and in the afternoon, I developed severe new onset right upper quadrant pain in my abdomen, with pain radiating to my right shoulder. It was unclear what the cause of this pain was, but I was x-rayed as perforation is a potential complication of stent insertion. The x-ray showed no evidence of free air in my peritoneum, reassuring us that it was unlikely to be a perforation. It also showed that the stent was open and patent, which was good news. The pain continued through the night and I soaked up some industrial levels of pain relievers in order to be comfortable. It was decided not to investigate further as the pain on the whole was improving the next day and I was able to eat and drink again for the first time in 3 weeks without vomiting. During that time I had been put on TPN (Total Paraenteral Nutrition), which is IV nutrition, in order to prevent me from getting malnourished and from deconditioning any further.
I was discharged on Friday, with a working stent and a new lease on life…. or so I thought.
One of my last blood tests in the hospital showed that my bilirubin had jumped from 12 to 51 within a day, and this had been overlooked. I noticed the result on my discharge summary that night after getting home and thought it was a bit odd. On Saturday morning, sure enough, Hannah noticed that the whites in my eyes were going yellow. I had Jaundice.
So on Monday, I was readmitted back to hospital with obstructive jaundice and a bilirubin of 95. My skin is now starting to turn yellow.
One of the risks of obstructive jaundice is that it can potentially become septic. This is called choleangitis and it is usually characterised by aggressive sepsis and septic shock. It is life threatening.
Today I had a CT scan to try and help find the cause of whatever is causing the obstruction of my bile getting from my liver into my gut. The scan showed both intra and extra-hepatic duct dilation, suggesting there is an obstruction outside of the liver, but it didn’t identify what that obstruction is, i.e. is it malignent, or stent related etc. The stent is however up against the ampulla, so could be contributing to the problem. The gastroenterologists have decided to go ahead and do an ERCP (endoscopic retrograde cholangiopancreatograph) this thursday to see if they can identify the cause, and then hopefully relieve the obstruction. This would be a best case scenario, as the alternative would be to go and put in a PTC tube (percutaneous transhepatic cholangiostomy), where they put a tube from your skin, into the liver, and then into the bile ducts to relieve the obstruction from behind. This is not an ideal solution as it doesn’t actually fix the source of the obstruction, it just relieves it (and that tube stays there to continually drain it).
So, I am in hospital , waiting for the ERCP under another general anaesthetic this Thursday and hoping it will fix the jaundice. Then, I can go back on chemo and try to get some stability back into my life again. :-)
I shall keep you all updated as things progress…
Last week I had my 25th CT scan and it was good news.
I haven’t had eyes on the scan yet myself, but basically it looks the same as the previous scan I had back in February. This means that the disease is stable, which is about the best we can hope for with Avastin, and it means the Avastin is working. So far I have had 89 rounds of chemotherapy total, 15 of which include Avastin, meaning I have spent close to $90,000 on my chemotherapy over the past 6 months.
The advice, since the Avastin is working, is that I should continue with it. It really begins to put into perspective what the impact of last years fundraising effort has had. At the time 60k seemed like a huge target that couldn’t be reached. As time has progressed, it has proved to be only the tip of the iceberg, and the money raised has enabled me to continue for a lot longer. At some point however, we will reach a point when the money runs out, and we will be left with the decision over whether to continue with treatment (in a debt based way), or to stop and let nature take it’s course. As regular readers of the this blog know, I’ve long since accepted the final outcome, so its not too much of a stretch for me to let nature take its course rather than to bankrupt family and friends with the ongoing ridiculous costs of my treatment, but that is a bridge we will cross when we get to it.
In other semi-related news, it would seem that I have developed a gastric ulcer over the past week, which means I missed my most recent scheduled round of chemotherapy. 5-FU is an agent that gives me mucositis along the entire length of the gastrointestinal tract, so the stomach not withstanding, has subsequently ulcerated. Avastin can also impair healing as well, so its likely the combo of the two has led to mucosal erosion and then impaired healing. I have since started on high dose Omeprazole (a Proton Pump Inhibitor) to help reduce the acidity of my stomach and therefore help with it’s healing. The last week has involved persistent nausea, epigastric pain and multiple episodes of vomiting at all hours of the day, so it has been a bit of a miserable time. I am scheduled for a gastroscopy this coming Wednesday to get a firmer diagnosis and to rule out other possibilities for my symptoms in the context metastatic disease.
Oh the joys of cancer… :-)
Until next time…
Life can be interesting in how it provides opportunities that you may not have foreseen in your life when you were younger. Throughout medical school and before, I would never have envisaged that I would be playing the role of raising awareness about bowel cancer. Cancer in general was that disease that I treat, and the thing that ‘other’ people had to deal with. Being diagnosed at the age of 27 was a paradigm shift, a disease concept was all of a sudden a very real part of my life, one that I have had to live with ever since.
I have been an ambassador for Beat Bowel Cancer for three years now. Their goal as an organisation is to raise awareness of an unglamorous disease that is often underplayed and not widely known about. They are also advocates for bowel cancer related screening and treatment. An interesting point which for me validates the effort of this organisation is that when someone famous is diagnosed with breast or prostate cancer, we all know about it, but when it is bowel cancer, the media often just report it as ‘cancer’, a term that is nebulous and unhelpful. To me it typifies the aversion that we seem to have in talking about this particular disease. When you hear that bowel cancer kills more people than prostate and breast cancer combined, you realise the imbalance in our understanding of this. Hence, as an ambassador, I see it as my responsibility (given my diagnosis) to do what I can, while I can, in the hopes that it will save lives. As with any cancer, the earlier you catch it, the higher the likelihood of successful treatment. If we can raise awareness, implement a screening program, and have treatment options that are comparable to the rest of the developed world (don’t get me started on the availability of Avastin… ), we can make some serious headway into the mortality of this disease.
Last week, as part of the campaign to raise awareness, I was invited to be interviewed on Good Morning.
It should be noted that due to the way TVNZ on demand works, this link will only be available for another 13 days!! So it won’t be available come July. :-(
Until next time…
After a three month publication cycle has finished, I am now free to post the article that I wrote in the OHBaby! magazine for their Autumn Issue. What follows is the text from the article, and then a link to the PDF of the actual 5 page spread so that you can see the photos and the layout. The brief was along the idea of how to communicate family values to your children, with my particular circumstance adding a unique perspective on it.
Communicating and teaching your children your family values can be a challenge at the best of times; achieving this when you know it’s unlikely you will survive to your daughter’s first birthday seems next to impossible.
Five years ago, I was diagnosed with metastatic bowel cancer, and after surgery and chemotherapy, I relapsed and became terminal. My life trajectory seemed to be mapped out, shorter than anyone would ever hope for or expect. But, for reasons that remain a mystery to both me and the medical profession, I have continued to live, while knowing that at any moment, I am only a heartbeat away from finishing my journey in this life.
For my wife Hannah and I, the decision to have a child was complex; It was prompted by the desire to start a family and cautioned by the implications should we be successful. In the end, we knew we would never regret having a child but there was plenty of room for regret had we not even tried. It breaks my heart that bar the miraculous, I will miss most of my daughter’s childhood. I will not get to see her flourish as a person, and I will not be able to walk her down the aisle at her wedding. It is with that breaking heart that I will do my best to leave her a legacy of who I am. I may not be able to leave her with memories, but I can leave her with the values I embrace, so she can appreciate who her father is.
I cannot create a pithy saying or a three-word catch phrase to live by. Life, to me, seems far too complex to be abbreviated to such small word counts. Instead, I want to offer you a sense of identity, a sense of purpose, and an understanding of where you came from, so you can then determine where you will go. The world is your oyster, to make of it what you will. My hope is to give you the opportunity to be the best you can be.
Having said this, ultimately any principle or ideal must still be communicated in words or they remain in the realm of the ethereal, never having concrete relevance. To that end, here is an attempt to communicate to you what matters to your family – as words to live by, and hopefully words to die by.
What does the Lord require of you? To act justly and to love mercy and to walk humbly with your God” Micah 6:8.
As a family of faith, this verse expresses what matters most to us. Elise, we want to encourage you to live a life of mercy, justice and compassion. We want you to love others and to learn to put them first, especially those who are less fortunate than us. This is how you can make your mark on the world, by being part of the bigger picture of humanity, and this is how you can honour your loving God.
Read, learn and travel.
Read widely and never stop learning. Travel to both the developed and developing worlds. Ask questions, challenge the status quo, and discover that life in middle class New Zealand is only how the privileged 5% of the world lives. Your mum and I believe that with this privilege comes responsibility; to use our time, wealth and skills to help others. Our worldview, narrow or wide, is shaped by our upbringing and education. Reading, learning and travelling will broaden your horizons, develop an understanding of life and grow a respect for people of all faiths and ethnicities.
Pause, reflect, breathe.
Life will be busy but we should always take time to pause, to reflect, and to breathe; to look back on a journey past or ahead to a journey planned; to contemplate the complexities of politics or the simplicity of a plate of food. We hope you will learn to appreciate the small things, so you then can appreciate the larger things even more.
It’s okay to cry when you are sad, and rejoice when you are happy. Life will always be a contrasting kaleidoscope of experiences and emotions; taking time to drink them in gives perspective, wisdom, and an understanding of yourself and your place in this world.
Elise, I won’t be around to remind you to say please, thank you or sorry. Instead, I will try to leave a legacy that instils a sense of compassion and respect for others where pleasantries will naturally follow. I won’t always be able to comfort you when you’re sad, or reassure you when your confidence is low, but I hope you know that I will always be there for you, even when I am physically absent.
I hope that in knowing who your father was, you will be able to choose who you want to be…
As an addendum, I am aware I haven’t posted many updates lately, but will plan some catching up in the next few weeks. Also, for those who do subscribe to the OHBaby Magazine, Hannah has written an informative piece on neonatal screening in the winter edition that went on sale today. :-)
Until next time…
Peeling off the sticker takes far more effort than it should. The numbness at the end of my fingers mean that it is more of an exercise in visual acuity than based on what I can feel. I rely on another sense entirely. Finally, it comes free, and out of habit, I rub the apple on my shirt to give it a clean, feeling the tenderness of my bruised subcutaneous tissue from the morning’s Clexane injection. I crunch into the flesh of the apple, wincing as the acid and texture burns against the epithelial cells of my mouth that have eroded from chemo. I should probably clean my teeth, but the white froth I spit out is always streaked with red, from gums that can’t repair themselves as quick as the chemo destroys them. I decide to have a coffee to wake me from my drug induced slumber from the night before, insomnia plagues me, I’m sure my pituitary has given up trying to regulate my diurnal rhythm. My hands loosen the milk bottle cap, the sensation is reminiscent of trying to rotate a cog that won’t budge, as all the subcutaneous tissue of my hands and feet are inflamed, swollen and angry looking.
I sip my coffee, I take a breath, and I remember I’m still alive to experience such things.
When I regale my life in such terms, I realise how quickly and to what degree the effects of chemo impact my life. It is very easy to create a tally of all the things that aren’t what they used to be before 85 rounds of chemo, and then count them as things to lament. I have long since passed the prime of my life, even though it should be ahead of me. Yet I don’t mourn these things, if I were to do so, I would quickly spiral into darkness, and so I choose not to. In someways 85 rounds of chemo have meant that a routine that has become imprinted into my life. A miserable routine yes, but routine somehow numbs its effects.
Furthermore, the fact that I feel at all is a gentle reminder that I’m still alive, and for now, that is what counts.
The three most recent rounds have become short sharp jolts of nausea. The recovery has improved since stopping Oxaliplatin, but the rounds, for reasons I have given up trying to fathom, have been rougher on the body. The 10th round was a revisit to 8 hours of hiccups, something I haven’t had since the first round of Avastin. Hiccups are surprisingly exhausting when they spasm the body in paroxysms of convulsion every few seconds for the course of a day. The exhaustion, seems to linger for longer than it should. The most recent round chemo has also seen my hands feet become particularly inflamed. You can see in the photo just how red my hands are and the skin that is peeling off.
The 5-Fluoro Uracil takes the blame for that one. Its a well documented side effect that I have managed to avoid for the most part. Everyday tasks like loosening the cap of the milk becomes disproportionally sore, not enough to stop me opening it, but enough to make me take notice. Fortunately it only lasts a few days, and has improved dramatically as I type.
My CEA continues to remain stable, as does the CT scan from about 6 weeks ago that I have failed to update specifically on this blog. All this means that I will continue with Avastin and 5-FU until either toxicity or non-response. Its much the same scenario as when I was on FOLFIRI for 66 rounds. The cost will continue at around $6,000 per round, but there are rebates that kick in from round 11 onwards meaning that the final cost will be closer to $2,500 -$3,000 per round. In retrospect, one might think that the fundraising target of $60,000 last year was naively low, although at the time it seemed impossibly large. What this means is that we have the luxury of continuing with treatment for the time being. It also means that if the Avastin continues to work, we could be in a position to ultimately choose between ongoing cost and ongoing life. In someways, if the Avastin were to stop working, it would make that choice null and void, and ironically easier.
Thats a bridge we will cross when we get to it.
This was a somewhat elongated update of my normal chemo yarns. The next round is going to be deferred by a week as Hannah and I will take on the roll of being camp doctors to 5000 youth at an Easter camp down at Mystery Creek, and then we head to Queenstown for a 7 day Autumnal escape which I am looking forward to.
Until next time…
Earlier this year I was contacted by the editor of OHBaby! Magazine to write a piece for their next issue. OHBaby! is a quarterly magazine targeted at parents of 0-5yr olds that covers everything from issues around pregnancy and parenting tips to learning and development. It also reviews baby accessories for which I have recently discovered there are a plethora of.
We have been contacted by many media outlets of varying descriptions for interviews or stories on our situation. On the whole, we have decided to decline most of these requests because publicity for publicity’s sake is not something we want to get caught up in. OHBaby! however came across very differently. The editor, Ellie Gwilliam, came to visit one morning to check us out. Her request, was not to do a story on us per sé, but to get me to write a piece around creating a family ethos, and how you communicate that to your children. I am obviously in a rather unique situation, and such an idea requires thought and contemplation to address the apparent difficulties of doing this when I am absent. Ellie thought this was a valuable perspective.
The reason we went ahead with this was because this was not just another story, but a chance to actually write and contribute in such a way that will hopefully enable other families to think about how they communicate their values to their children. Furthermore, we found Ellie to be great to work with, with her sensitive manner and clear vision of what she hoped to achieve.
The article itself is unfortunately not fully available online unless you pay to view it, or have a subscriptions to the magazine. It went on sale on April 7, and will be available for the next few months. HERE is the link to the online teaser in lieu of the actual magazine or subscription, or you can click on the image above.
Otherwise, you should go buy the magazine instead. :-)
Until next time…