Getting sick is a lot like riding a train into a dark tunnel. Its dark and a bit (or maybe a lot) miserable when you first ride into it, but in the distance is a light. That light is what you are targeting, it is what represents coming out the other end, getting better.
When you are palliative, there is no light in the tunnel. You go into the tunnel, become enveloped by darkness, but don’t have anywhere to go, no light so to speak. Each day is a progressive deterioration on the day previous, there is no hope that I’m going to get better. The focus is instead keeping me as comfortable as possible.
Its a bit of major mind shift, because every other time I have been sick, there has been a light. Sometimes dim… but still a light.
Since I last posted I managed to get discharged from hospital into hospice care, with the goal to move from there to home in the longer term, which after two weeks, I also managed to achieve.
One the outstanding issues that was preventing me from moving to hospice in my last post was my ongoing biliary sepsis. With unclamping the PTC tube and antibiotics I have managed to recover from that.
The focus in the hospice was getting myself into a manageable space where pain etc could be managed from home, which I now too have achieved. With so much water having passed under the bridge, I apologise for the lateness of this blog post. I now find myself at home spending my last days with my family, which has been great after close to 7 weeks in hospital and hospice care. I now have my family around me all the time, so they aren’t ‘scheduled’ visits, and it is much nicer to be in a familiar environment.
As alluded to at the beginning of the post, being palliative is quite the change in outlook and mindset. What it essentially boils down to is that I am now waiting to die.
I don’t necessarily want to delay that for as long as possible, I’m not sure what I want to be honest. I’m helpless at the moment. Death will come to me as quick or as slow it decides on it’s own terms.
I know I’m not eating enough to sustain life and that will catch up with me eventually…
I know i’m keeping up with my fluids…
I know that my body is disappearing in front of my eyes, slowing deteriorating bit by bit each day…
I know that death creeps around the corner waiting to pounce.
I know that all of this is beyond my making. Maybe death will pounce next week, maybe in 5 weeks time. He/she will choose their own time.
In the mean time I will enjoy what family time I have, I will catch up and see friends old and recent. I will enjoy what time I have left for whatever blessed time it is that I have it for.
For those following this journey, short or long, I don’t know how much of it there will be left. I will try to update when I can, but the reality of it is that as I deteriorate, it will be harder to do so. I am already on a lot of drugs that dull the mind, it can make writing harder, and make concentration harder still. I want you all to know that I am not unhappy, but content. I am taking each day as it comes, absorbing what it has to bring me and trying to make the most of while I can. This is not to say there aren’t hard days. Hannah and I have had our fair share of shedding tears as our reality comes to home to bite, but that is normal. Who wouldn’t cry when death is just around the corner, but, on the whole we are both at peace, preparing ourselves for what the next chapter will bring.
I am not afraid of death, maybe partly anxious about it’s mechanism, but I have a faith that reassures me however it happens, I will be going to a better place, one where death and suffering will left behind and the resurrection of Christ will become the most apparent it has ever been to me.
Until next time….
In what seems to be a long time since my last post, a lot of water has passed under a very small bridge. I came home on leave with the PTC drain in and went back to hospital so that I could have the stent inserted under a general anaesthetic. This procedure happened the day after I was readmitted and it turned out to be the most painful day of my life. What should have been a 45-60 minute procedure ended up being 3.5 hours long. When I woke up from the general anaesthetic I was in agony. I was in so much pain, I don’t even know how to describe it. The post anaesthetic care team did their best to give me analgesia sufficient to control my pain and they were unable to do this. Over the course of a day, I had 3 x 10mL boluses of Ketamine as well as going through > 2500mcg of Fentanyl. It was established that I needed an epidural but they also needed to establish that there was no other cause for this new pain so it was decided that I would have a CT scan to rule out complications. Fortunately there were no new or concerning features on CT. So I returned to the post-operative care unit and an epidural was placed. My experiences of ketamine boluses were also terrible; its auditory and sensory hallucinatory effects made me feel really trippy and I would not wish that sensation on anyone. Tuesday officially went down as the most painful day of my life. The following two days not much changed with my regimen for pain relief and a trial stop of the epidural occurred on Friday. Unfortunately that too was unsuccessful.
On Friday, Hannah and I, together with the palliative care and oncology teams, had some long and hard conversations around when would be appropriate to stop aggressively pursuing quantity of life. We agreed that whilst I would still happily be treated for small things, we were not going to pursue treatment that would forsake quality of life. My oncologist was of the opinion it was unrealistic to go back on chemotherapy as it was evident the cancer had stopped responding before the period of non-treatment and my overall fitness and health had deteriorated so rapidly over such a short period of time. Based on this we came to the decision that I am now for palliative care only. From now on, our decisions will be based on things that influence my quality rather than quantity of life. How short or long that is is anyone’s guess. My priority is to get home if I possibly can as that is where I want to be.
Going on in the background of all of this has been ongoing fevers that we have yet to identify a source for but whose guilt most likely lies in biliary sepsis. In order for me to get home, the first hurdle is to treat this successfully.
We always knew it would come to this at some stage, but perhaps not so soon. For some reason it always seemed to be a few months down the track. For whatever reason I have managed to outlive anyone’s predictions for the past five years. But now the chickens seem to have come home to roost.
I intend to keep blogging through this process as I document the journey to death and I hope and pray that it gives Elise something to read so that she can get a glimpse of who her father was.
Until next time…
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…
This most recent round of chemo was the 6th of FOLFOX and Avastin, and was marked by a few significant points. Firstly, it was the 80th round total of chemotherapy that I have had. I remember after 20 rounds of FOLFIRI thinking that there was no way I was going to be able to make it through another 20 rounds. As it turned out I managed to cope with 66 rounds before it was stopped, and it was stopped because of non-response rather than toxicity. So 80 rounds total of all my chemotherapy is quite an achievement, and not something I would recommend as an overall lifestyle to others.
The second point of significance for this round was that this was the first round of chemotherapy as a father. Chemo renders me fairly useless for a few days at the best of times, but usually that has been something that is easy enough to deal with. I can go to bed, sleep it off, and Hannah just feeds me small amounts of easy to digest food for a few days. With Elise now part of the household there are increased responsibilities that are much more challenging to uphold over those few days. We have been fortunate enough to have been inundated with support from friends and family, and literally haven’t had to cook a meal yet since Elise has been born… But there are a few days that parenting for me, meals aside, becomes a next to an impossible task. Days 1 – 3 of chemo basically consists of having to give Hannah all the parenting responsibilities and I sleep through most of it. Days 4 – 5 are when I start to feel better, but its amazing how just a small amount of pacing whilst trying to settle Elise can leave me exhausted pretty quickly. I am a wannabe parent at this time but with little value to add to the process. Come Day 6 onwards, I’m well enough to resume my normal parenting responsibilities.
There are undoubtedly challenges to being a parents at the best of times, but we have the added complication of chemo punctuating our lives every 2 weeks. We always knew that was going to be the case, and I don’t see why it should stop us from doing our very best. It hasn’t stopped me graduating medical school, it hasn’t stopped me working as a doctor for 3 years, and it hasn’t stopped me from living my life. I refuse to let chemo stop me from being the best father that I can be.
Having your daughter fall asleep in your arms, watching her find peace in your embrace, is one of the magical things on this planet. A completely dependent little human relies on us as parents, and us alone to provide for all her needs. She is the cutest little baby in the world (as seen in her parents eyes) and there is real joy in nurturing her through the early stages of the newborn phase of life. There is delight in watching her open her eyes and having her stare back at you.
…And when she does that, I imagine that she is forming memories of me, her father. The rationalist in me knows that isn’t the case, the romantic wishes it is. Its not an easy thing knowing that unless I survive for years yet, she will only ever know her father through photos, writing, and stories.
…I hope she will also know how much I love her.
Until next time…
My latest CT scan shows good news.
The CT was actually before Christmas, and I had the results a few days later, but I haven’t had the chance to have my own eyes on the scan until the last few days and actually be able to quantify what ‘significant’ response is….. and its actually pretty impressive.
The liver lesions, the retroperitoneal lesions, the lung lesion and the mesenteric lesions have all either shrunk or remained stable, and there is no new disease. This is about as good as we could hope for with my treatment. There were really only three categories the CT result could have fallen into:
- No response, where disease continues to grow uninterrupted, the worse case scenario;
- Partial response, where disease might remain stable with very little advance;
- or Response, where the disease stops growing and actually begins to regress.
The third category being the best outcome. What makes it even more significant is that the scan was only done after 4 rounds of chemo, when it would usually be done 6 rounds in. So what we are seeing is significant early response, arguably even better.
What this means is that I will be around for longer yet. I will almost certainly get to see my daughter as well as being around for the very early part of her life. How long this response continues is another question entirely, and only time will tell. Perhaps the biggest deciding factor is how long I can continue on Oxaliplatin. This is the most toxic of the drugs I am on, and it is doubtful I will be able to sustain 10 rounds at full dose. At some point we will have to either dose reduce it, or stop entirely. This is compounded further by the fact that it’s toxicity is cumulative and I have already had 8 rounds of it 5 years ago. At the moment what I notice in particular is the peripheral and autonomic neuropathy. Cold feels like pain (particularly in the week after chemo), I have reduced sensation to light touch at my finger tips, and I have increasingly noticeable postural hypotension, related to sluggish sympathetic nervous response when I stand. This is also compounded by the lack of sympathetic innervation in my right leg after my retroperitoneal lymph node dissection last year. What this basically means is every time I stand up, I have to be careful I don’t pass out as the body doesn’t get blood to my brain as quickly as it normally does with a change in posture.
Further to all of this is the fact that my most recent round of chemo (round 5) has been deferred for 2 weeks due to neutropenia. My blood test the day before chemo revealed a neutrophil count of only 0.29, which is too low for chemotherapy. It would also explain my more-than-normal fatigue during my well time, as well the 10 days of rampant mouth ulcers I had. Christmas day was the first day for 10 days I could eat with no pain and I am yet to figure out if God was being symbolic or ironic… Neutropenia in itself is not too bad, but I am at further risk of infection, and neutropenic fever would necessitate a hospital admission with IV antibiotics. So far no drama on that front.
So I end the year with the good news of the CT scan, the semi-good news of the delayed chemo (more well time), and the perhaps more significant implications of how future chemotherapy may impact my health, with increasing toxicity, both neuropathic and haematological.
Until next time…