Deep Disappointment is a term that barely scratches the surface of how I feel.
Yesterday I went to see my radiation oncologist for an appointment that was all about the planning of my radiotherapy. I had a PET scan the week before to help them get a better idea how my anatomy was after the surgery.
What I got was news that caught me completely off guard.
The cancer is back.
My heart sank. This wasn’t supposed to happen… Not like this.
Hannah wasn’t with me at the time, she was at a clinic in preparation for her long case exam. This was supposed to be a routine oncology appointment, I have had hundreds of them. I guess my suspicians were raised when I was brought into the clinic on time, almost immediately after my arrival. That doesn’t normally happen.
The PET shows in a 2.5cm lesion in the right lobe of liver, this is a huge amount of growth since it was non-existent on my last PET in January. Further to this, there are two extra areas that have shown increased update of the radioactive isotope they use for the PET. They are small, less than 1cm, one in my mesentry, the other in the retro-peritoneal para-aortic lymph chain, near where they opereated. The optimist might say they are reactive as a result from surgery. The realist, when all things are equal, would say this is further disease.
I came home.
Breaking this to Hannah was going to be worse than hearing it. I tried writing….
It didn’t work.
We dared to hope that we might regain a normal life. It was a dare that was repayed with shattered expectations and destroyed dreams. Cancer is a bit mean like that.
It makes grown men cry.
Today I feel deflated, like a balloon with no air. I think it will take a few days to regain the puff to reinflate again.
From here it is a bit of an unknown and the roadmap will become clear in the coming weeks. There is talk of further surgery to resect the part of the liver with the node in it, and there will likely be more chemotherapy.
I was supposed to be returning to work full time in just over week, I guess that wont be happening now….
Today is day 13 post op.
I was hoping to get a surgical update on to the blog a bit sooner than this, but the size of the surgery, and its length of recovery time whilst known, perhaps did not truly register with me.
The surgery itself went for 6.5 hours on the 14th of February, its a valentines day I’m sure I wont forget in a hurry. I was taken into theatre about 0830 in the morning, and the anesthetists took some time prepping me for surgery. They apparently had some trouble trying to get in the epidural, although I only have vague recollections of this as by this time they had already hit me with midazolam and fentanyl in not-insignificant quantities. In fact, shortly after the epidural, the next thing I remember is waking up in recovery. The anaethetists also had some trouble trying to insert a central line, as my right IJV was thrombosed 3 years ago, and not particularly helpful,whilst my left IJV currently has a portacath in it. In the end, they opted for a right subclavian line.
I woke up to the news that the surgeons successfully managed to resect the para-aortic node without needing to graft the IVC or the aorta, and that they also managed to successfully resect the node behind the left renal vein without having to remove the left kidney. Both were intra-operative decisions that would/could have significantly impacted on the length of recovery. The final node, which was located in up behind the crux of the diaphragm was the most technically difficult, but that was successfully resected as well.
All in all, it was considered a pretty successful surgery. The rest of the work is left up to me in recovering from it. I initially spent 2 nights in the surgical HDU, having lost about 1200mls of blood during the surgery, and resuscitated with about 9 liters of fluid. For the first 12 hours or so, there were issues with maintaining my epidural block, as well as my blood pressure. The epidural was managed with various concoctions of anesthetics and opiates until an effective combination was found. The low blood pressure required the use of inotropes, in this case dopamine, to help maintain a mean arterial pressure over 70mmHg, which was initially dropping to as low as 50. They also gave me over 10 units of Albumin during this time to help support my vascular volume.
After 2 days in the HDU, I was transferred to ward 73 which is the urology ward. Basically the emphasis from that point has been about managing pain, and awaiting the bowels to work again. One of the main complications of this surgery is an ileus, which is where the bowel, after being asked to sit on my chest wall for 5 hours during surgery, go into a state of shock and stop working. An Ileus can last as short as a day or as long as a couple of months before it resolves and bowels return to normal working order. Its very hard to predict how long it will last for, and in extreme cases, IV nutrition is used since the patient can’t eat. Currently, my bowels are working, but not in stellar shape. I still have difficulty eating and holding down food, and can really only eat small quantities at a time. My abdomen has been really distended, but that is slowly improving over time.
During the surgery, there was a drain placed in my abdomen that drained over 2L of fluid over the 36hrs after the surgery. The drain was then removed and the wound dressed. I only mention this cos 2 days later, at about 4.30am, I awoke and noticed that it was a little damp around my dressing. The nurse removed the dressing to inspect the wound, and literally, fluid was bubbling out of my wound… we promptly replaced the dressing with a bag and my abdomen drained a further 1500mls over the next few hours.
Outside of all of this, I have done pretty well, and was discharged day 10 post op. I had some subsequent nausea and vomiting afterwards, but this seems to now have settled, and I’m feeling a lot better. I’m still really really tender, and this won’t change in hurry, i’m also quite anaemic from the blood loss, both of which will improve over the coming months.
So, that was my surgery!
Till next time…
I have been a little lackluster of late with my updates. The main reason being that I have now been chemo free for over 2 months, and I have been playing the waiting game in anticipation for the upcoming surgery.
The surgery is indeed confirmed and going ahead on February the 14th. I have taken the time to speak to a number of very experienced surgeons at auckland hospital. Some of those will be involved in the surgery, some will not. The consensus seems to be that the surgery is an advisable option given my circumstance.
There is, however, no way of knowing what the outcome will be. Aside from the peri-operatively morbidity, which are the standard risks of infection, bleeding and damage to other structures, beyond that, whether the cancer comes back more aggressive, comes back in a few years time, or doesn’t come back at all is anyones guess. We are beyond the realms of evidence based medicine, beyond the ability of medicine to predict the outcome.
Its technically uncharted territory, and I may even get to publish a case report out of it (assuming I survive it).
One question that I repeatedly get asked over the past few weeks is how I feel about it. I’m not really sure what people are expecting when they ask that question, because how I feel is not something that is answered in a five words or less, which is usually the expectation or the context of the question.
If you do the maths, then going ahead with the surgery is a no brainer. When you take into the consideration the risk profile of the surgery (which is not insignificant), the possible outcomes of the surgery, and compare that to my current prognosis, then it makes complete sense to go ahead with it.
If you think about what it is like to have your belly cut from the xiphisternum to the pubic symphysis, have your intestines taken out and moved to one side whilst extensive dissection up the para-aortic lymph chain and left renal vein (with the very high chance of losing the left kidney) during a 4-6 hour procedure feels like… then you can imagine that I’m not particularly looking forward to the whole event.
I’m not excited, i’m not terrified, and i’m not apprehensive… I just have to do it. Its like sitting an exam, you never want to do it, but the work, the stress, and the learning is what you have to do in order to get the outcome you want. I think the emotional flatness I feel towards this surgery is reflective of the roller coaster I have been on over the past 3 years. It is beginning to become routine for literal life or death events to have a hand to play in my life, and as such, I’m less responsive to them. I have a surprising amount of peace with the process, peace with the peri-operative morbidity and mortality risks, and peace with the unknown outcomes. If I didn’t have peace about this, I imagine that this would be a very stressful process.
Post-operatively, I will probably be in either the surgical HDU or DCC for a day or two afterwards, depending on what degree of support (i.e. inotropes or respiratory) I need after the anaesthesia, before returning to the ward. The expectation is that I will probably need about 14 days of recovery on the ward before going home, unless there are complications such as lymph leaks, or infections etc that may require me to stay longer. All things considered, there is about a 25% chance I will lose my left kidney, and a smaller chance that I will need my IVC and aorta grafted. All these will be intra-operative decisions that I wont find out about until after the surgery. They will also influence time in theatre, and time for recovery.
The long term plan is to get back to work in the 3rd quarter of this year, which is about 3 months off work. If i’m well enough to go back sooner, then I will do that.
Whilst I’m recovering, I shall endeavor to keep everyone up to date from the ward, as I imagine that between pushing morphine boluses, I shall have little left to do with my time.
In the mean time, I would appreciate prayers as I embark on the next chapter of this journey.
Until next time…
I have the semi-official results from my PET scan on Wednesday.
The results are reported by three different radiologists, so the final report is still pending, but the preliminary report is as follows.
There appears to be no further spread of my cancer than what we already know about from CT imaging. Basically, this is what we were hoping for. There was a real risk of having further metastasis that are too small to be seen by CT, if you were to follow the expectant course of adenocarcinoma, then you might expect to see these. I was thinking we would see further lymph node involvement at the very least, especially in the para-aortic chain where there is already disease. But, it would seem there are only the four nodes that we already knew about.
What this means is that I am being offered surgery. I described these surgery in a previous post, so won’t get into the finer details of it here, but retro-peritoneal lymph node dissection is pretty huge surgery, and not without its risks or complications. What surgery offers though, is the first prospect of turning my illness into something non-terminal for over two years. Its a bit to get my head around to be honest. Of course, surgery could equally accelerate the disease and having me find my end of life sooner rather than later, as with medicine in general, its a risk/benefit equation.
At this stage, surgery has been pencilled in for the 14th of February. I would expect to not be working for probably 3 months after that as I recover. The hospital stay is 10-14 days if there are no complications making me stay longer, but with a surgery this large, there is a reasonable chance that complications will occur. In the mean time, I may or may not re-start chemo, I have to wait till I meet with my oncologist to see what he thinks with regard to this.
If the final report adds or changes the picture, I shall update to let you all know. In the mean time, I will digest this new and rapidly changing course of events.
Into the unpredictable future I go…
I have decided to resort to decimal update references since I’m currently spitting out more updates than anticipated. The latest news is that I’m in hospital for the night and that surgery has been delayed till tomorrow morning. I’m still on the acutes list, which is actually annoying, cos it means I can get bumped at any time by something more serious, as was the case this evening. Apparently some neuro surgery was more important. 🙂
Anyway, I’m in a room with an 82yr old male with angina to my right who calls me by a different name each time he talks to me, another old guy with pneumonia, and a lady who sounds like a man when she talks. I’m assured she is a female, but haven’t yet been able to verify this. Audibly she is definitely man sounding.
So I’m gonna rip out my earplugs so I don’t get kept up by wheezing all night. Hopefully surgery will to ahead as planned, an I can get home tomorrow.
Please enjoy the view of the end of my bed as much as I will :-).