So it’s been some time since I last wrote an entry and I’d be lying if I said a lot hadn’t happened in that time so this is just a quick catch up.
Buoyed from the stellar pathology results, I awaited my appointment with the oncologist to ascertain when we got back to the poisoning. It was a strange feeling. On the one hand I wanted to get back to treatment as soon as possible so as to be actively doing something, and if for no other reason than, the sooner I started, the sooner I finished.
The oncology registrar I saw was not near as excited by my pathology results as I was, and was almost blasé about the whole thing. She confirmed that I would be completing a further 9 rounds of chemo, bringing my total to 12, the gold standard of care. She gave me my treatment plan and I saw that the fun began the following week.
Treatment #4 of 12 and beyond
The worst chemo round I’d had was the one immediately before Christmas last year, and I think that was simply because I was disconnected a couple of days before Christmas and so hit the wall on Christmas Day, making it a less than festive occasion. I lay down for a nap at 4pm and didn’t wake up until midnight, and then went straight back to sleep again.
This first round back was a shocker. And by shocker I mean, losing 5kg in a week, being unable to get off the couch/out of bed/and lying in the foetal position crying, unable to move for fear of projectile vomiting. For a week.
It turned out that they were giving me the same dose as pre-surgery, despite the fact that I had lost almost 14kg from surgery and adapting to the ileostomy. The result was that it completely flatlined my liver function, red and white blood cells and basically sent my body into “what the fuck have you done to me” mode where it wasn’t a happy camper.
That shit was changed quick smart and in a hurry when I went back to see them before the next round and the dosage was reduced to match my much more svelte figure. Fortunately since then, my chemo rounds have been relatively uneventful, other than the fact that whereas I used to experience a ‘chemo wall’ at the end of a treatment week, each treatment brings with it a constant ‘fog’ where everything feels much more difficult than it ought.
Clean scans makes for a happy man
Part of my routine monitoring is regular CT scans of my abdomen, chest and pelvis to check for distant metastasis. The tech that conducted the scan was cagey as all fuck and didn’t really leave me with much confidence, although my ‘scanxiety’ was relieved considerably when I had the scans in my hot little hands and was able to compare them to the previous scans and my lay eyes couldn’t discern any difference, of course other than the lack of a big-ass tumour in my butt.
My ability to interpret scans was reinforced when the oncologist rang me and confirmed that all was normal and ‘unremarkable’.
“There is no evidence of disease (NED), you’re in remission and I never want to see you again”
Perhaps the biggest news came from my radiation oncologist in my first (and now last) consult with him following surgery.
I had been reading a buttload of journal articles which led me to believe that in light of the complete pathological response, I was technically in remission. It was another to have that inkling confirmed. I sat down and with a big smile, he said “The scans and blood tests show no evidence of disease following your neoadjuvant treatment and surgery. You’re officially in remission. We’re going to keep a close eye on you for some time but you can put this behind you and focus on being a dad, husband, mate and work colleague. The risk of this coming back is negligible at best”. I raised with him some statistics I had read in some articles about survival rates and he agreed, reiterating that “tumours that respond in the way yours has is a self-fulfilling prophecy, they don’t come back”. He added that he could never give me a 100% guarantee but the smile on his face showed me the level of confidence he had in what he was saying.
Fuck. In less than 10 minutes I had my life back. I saw my future which is something that was hiding in the background of my mind for so long. I saw myself walking Annabelle down the aisle as a real possibility, and even a likelihood. I saw annual holidays to Hawaii as something more than a pipe dream. In the blink of an eye, all the pain, the overdosing on morphine, the stuck drain, the leaking ostomy etc were worth it.
Are you drunk?
One bit of excitement was an impromptu visit to hospital during the chemo round before this one (I was disconnected today). I turned up to work and while talking to a colleague, noticed my tongue feeling heavy and I was slurring my speech. Apparently it wasn’t noticeable to anyone else but it was clear as day to me. It happened once more a few minutes later and then my lower lip went numb.
Suffice to say, I don’t think that’s supposed to happen and so I rang the treatment centre and it was suggested that I spend the day with them to rule out a Transient Ischaemic Attack (TIA), or mini stroke.
My annoyance of having to take a day off work when I otherwise felt fine dissipated when I met my ER doctor who was a real cutie. I was quite happy to have her perform a neurological exam on me and was relieved I didn’t get a half mongrel when she stroked my thighs to test for symmetrical nerve function.
Another CT scan, this time of my head to check for clots, bleeds or crayons (think Homer Simpson) revealed nothing (other than a brain – I made them double check and confirm this). Of perhaps the most relief and further reducing my ‘scanxiety’ is that they didn’t find any lesions or tumours. It’s uncommon, but not unheard of that bowel/colon/rectal cancer can metastasise to the brain and because it’s not common, they don’t routinely scan the head as part of ongoing monitoring. If nothing else, it was another body part that I can cross off the list as showing no evidence of disease.
They’re not entirely sure what caused it, but their best bet is that it was a dodgy reaction to the chemo, likely the Oxaliplatin. A google search confirmed that same was a rare, but not unheard of side effect. They obviously weren’t concerned enough to stop my treatment, as they hooked me up Monday gone and disconnected me this afternoon.
So where do we stand now?
I only have three more rounds of chemo to go. Apparently, I have already outlasted the vast majority of patients in terms of tolerating the most violent of my chemo drugs, Oxaliplatin. Most people don’t make it to 6 without the drug being removed from their treatment because it’s a nasty motherfucker. I’ve survived 9 and there is no indication that I won’t be able to make it through to the end. Again, the more of that particular drug I can tolerate, the better the long term prospects of remaining cancer free. Micrometastises really don’t like Oxaliplatin, and the fact that my response was so overwhelming prior to surgery puts me in good stead that if anything is left behind, it isn’t happy, and won’t be around for much longer.
After I finish chemo I have another appointment with my surgeon and he will refer me for a barium enema. I’ll save that for another post, but suffice to say, I suspect it’s going to be as uncomfortable as it sounds. The purpose of that ‘exam’ is to test the join between my healthy colon and my turd-cutter and make sure that I’m right to have the ileostomy reversed.
How am I feeling about this whole fiasco?
It’s weird but as I get closer to the end of this whole thing I find myself getting more emotional about the whole thing. Finishing chemo is bittersweet. On the one hand I’ll be stoked to not have to go and spend a day in the hospital each fortnight. On the other, not having any treatment removes that safety net that we’re not actively doing anything and it’s now down to my body resting on the hard work it did/has done so far.
I’m not as concerned about the coming surgery as I was the last one because comparatively, it’s a walk in the park. The operation itself takes between 1/2 hr to an hour and to be honest, I’ve watched it performed on YoutTube that many times I could probably do it myself/ I’m more concerned about the recovery, and getting used to what will be the new ‘normal’ for me in terms of using my custom made anoos. Only time will tell and that’s a story for another post.
I’m looking forward to life getting back to ‘normal’. Being able to sleep without fear that my ostomy will leak, or being self conscious about it when I’m out in public. I’m looking forward to getting back in the surf and taking photo’s. I’m looking forward to being able to sleep in. I’m looking forward to being able to eat all the things I’ve been craving (pretty much anything that has a skin on it). I’m looking forward to being able to eat ice-cream/drink cold drinks whenever I want instead of only every second week. I’m looking forward to not feeling tired ALL THE FUCKING TIME, although I know that this will take some time to recover from. Most of all I’m looking forward to being a better dad and husband, and making it up to Lyndell and Annabelle for the time that we’ve lost due to this shitty situation we found ourselves in.
Lastly, I’m looking forward to my “Fuck you Miguel” party, so I can have a drink with all you wonderful people and thank you for keeping my spirits up and generally being awesome. You fucking rock.
Until next time folks, be kind to your colons, and each other.