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…