Like any good story, it has a starting point, lets call this "normal." Life was just chugging along with its minor ups and downs, but to be fair, life was pretty good. Bryan was happy in his job as Acting Manager of a team of Analysts at MED, I had just started a new job (attempting to make the move from Government to the Private Sector) and our kids were happy and settled at their preschool.
Obviously, the first blow was the initial diagnosis, however once we got our heads around that and into treatment and the mindset that this was only going to take a year and then "normal" could resume, we figured that everything was going to be ok.
The first phase of my treatment involved six weeks of radiotherapy which meant a 25km daily trip each way into Wellington Hospital. Initially I had a bit of a moan about this as we seemed to have a perfectly good hospital (Hutt Hospital) a mere 6 minutes from home. However, after talking to other regulars in the waiting room who had traveled much further than I had (as far North as Waikanae and Martinborough and as far South as Nelson) I stopped moaning and counted myself pretty lucky to live so close to Wellington Hospital. After all, this whole business of treating cancer is pretty expensive and specialised, and as a result there are only 6 cancer centres in NZ.
On the surface radiotherapy didn't seem so bad. Treatment would usually only take about 20mins (if they were running on time) and all I had to do was lie still on a bed in the correct position for about 5mins. Done. On alternate days I would see either a nurse, a dietician or my Radiation Oncologist just to make sure things were tracking along ok. After the first 3-4 weeks things started taking a toll. My bowel was quite upset about being struck repeatedly by high energy beams and over time this led to extreme fatigue, nausea, loss of appetite and mild burns to my skin. I also had to deal with the fine balance between constipation and diarrohaea on a daily basis. The dieticians were set upon me as weight loss is apparently not a good thing during a course of radiotherapy as they need you to be exactly the same size and shape for each dose so that the beams hit the same spot each time. Must say I was a bit bummed that they were so unhappy with a 2kg weight loss as I was personally stoked :o) All that aside, things were turning a little pear shaped towards the end which meant I needed to have a blood transfusion to bring my blood cell counts a little bit closer to normal. Following that I soldiered on, dragged myself over the finishing line and called that part one done.
Good news followed, which seemed to make it all worthwhile, and that was that my primary tumour (which had been 8cm x 2.5cm at diagnosis) was "gone." There were no traces of it on MRI or PET, however on the advice of my surgeon and wider multi-disciplinary team, I proceeded with an Abdomino-perineal (AP) resection.
So the high = radiation worked. The low = I still needed to have a large portion of my large bowel (including my rectum) removed and would now have a permanent colostomy bag.
Surgery followed in late November 2012. The high would have to have been waking up to the news that the surgery went well and they were happy they got good margins (ie clearance around the tumour site). Lab analysis in the days that followed also showed that there had been a couple of pockets of cancerous tissue near the primary site which were also removed, so surgery had been a good call. The low part was when I was told about the spread to my liver as this was not expected and I had a feeling I knew what that would mean for my prognosis.
The recovery from surgery was hard going. I was in hospital for 7 nights (which I hear isn't that long to be on the surgical ward but it felt like more than long enough to me) and recovery at home took about 6-8 weeks. I had a sore bottom for about 2 months, but was happy to be able to take myself off pain killers a couple of weeks before starting chemo as my preference is to be drug free as much as possible.
Just prior to starting chemotherapy I had another CT scan to establish a baseline or starting point to measure the impact of the upcoming chemotherapy. By this time (Jan 2013) the liver tumours had grown big enough to be seen on a CT scan and it showed that I now had multiple liver tumours (too many to count) and they were spread all throughout my liver.
The first round of Xelox (Capecitabine plus Oxaliplatin) was horrific. I wasn't comfortable in bed, or sitting up, the room spun. I couldn't focus on the TV, or concentrate long enough to even read an email, let alone a book. When I caught a glimpse of the news I found it overwhelmingly distressing. My emotions were totally screwy. Each day went on far too long. Relief came in the form of sleeping pills, and then on about day 4 when my district nurse swapped the Metaclopromide out of my anti-nausea cocktail and added in Domperidone and Nozinan. With the new anti-nausea combo I was able to function again, and I really appreciated what a good day felt like after that. Thank goodness, the following 7 rounds were less eventful now that my anti-nausea combo had been sorted.
There were two side effects of Xelox that hit me the worst after that. The first was the nerve damage it caused to my extremities (fingers, toes and nose) and the second was a horrible taste disturbance that meant everything I ate for about 10 days tasted awful. Nothing seemed to help. The cold sensation I experienced from Xelox was bad enough that on the day of chemotherapy I could not hold a standard knife and fork to eat - they were too cold. I had to use plastic or a kiddie knife and fork. It also meant I couldn't prepare veges for tea (for about a week) as the cold water running over my hands quickly turned painful, and then numb if ignored. Hanging washing was similar. I had to drink luke-warm tap water or hot drinks, otherwise my throat would threaten to seize up. Horrible stuff, but at least it worked.
So the low = horrible side effects. But the high was that after 8 rounds of Xelox my multiple and widespread tumour mets were "gone" and there was no new disease.
Great news, but received with some trepidation as I have learnt during this journey that even though CT, MRI and PET scans have their uses, they cannot be solely relied upon to detect cancer as they cannot detect abnormalities at a cellular level. So even if it looks like all the cancer is gone, it probably isn't. It only takes one cell left behind (which cannot be seen with the naked eye) and off it goes again. The sole purpose of a cancer cell is to multiply at all costs, and unlike other (healthy) cells in our bodies, they do not self destruct when things go awry. Some Biology 101 there for you.
So, following the news that my cancer was "gone for now" (July 2013) I was put onto active management which basically means a follow up at 2 months, then 3 months, then 4 months depending on how you are going. Unfortunately at my first check up 2 months later the CEA level (a cancer marker) in my blood was back up to its pre-chemo level so I was sent off for another CT scan to see what was happening. I was pretty bummed at this stage as I knew what it meant and had been hopeful for a longer chemo break. In retrospect, there had also been a mental shift during my 2 month chemo-holiday where hope had turned into an expectation that it would be longer. I think I was also holding onto a hope of being in the 1-2% category where chemo actually does kill all the cancer cells. But this wasn't to be.
By the time I got my CT results I knew what they were going to say so I was not shocked to hear that the next step was getting a portacath put in and 8-10 rounds of FOLFIRI would follow. The good news (and we usually can find the good in amongst the bad) was that at that stage my oncologist didn’t feel there was a great hurry to start, so I managed to add another 6 weeks to my chemo holiday. I was thankful for that as it meant I was able to have the school holidays at home with my kiddies without the interruption of chemo, and we headed to Christchurch and Ashburton for a few days to catch up with friends and family down there.
I was supposed to have my port put in the first Friday of Term 4, but the day before that I ended up in ED with a 39 deg temp and severe
abdominal pain. Needless to say the port op had to be postponed and I had a couple
of nights stay at Wellington Hospital. I recovered quite quickly from that and the
port went in a week later, the day before I had my first round of FOLFIRI. I
had my second round yesterday (well, I’m still attached, but you know what I
mean) and so far so good. I am finding it much more tolerable than Xelox so am very grateful for that.
So far I have been able to keep my own hair, however unlike Xelox, hair loss is a common side effect of FOLFIRI so my oncologist seems pretty adamant I
will lose it this time. So far I have not had any obvious signs of hair loss, but I guess time will tell.
At this stage I would like to touch briefly on the whole issue of living with a colostomy bag and harp back to "everything in perspective." I must admit that living with a colostomy bag is not as horrific as the idea of one. On the whole it has just meant always being prepared (and having to dispose of little bags of poo), and that is something you get used to when being out and about with a baby or toddler. In a strange way parenthood had helped prepare me for living with a colostomy bag.
My next blog is going to focus on the concept of "no man (or woman) is an Island". Obviously this has been a tough journey so far, and no doubt to come, however I would not have been able to make it through without such helpful and supportive family and friends. More to come on that though so I will save it for another day.
Take care, and look after eachother.
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