Peeling off the sticker takes far more effort than it should. The numbness at the end of my fingers mean that it is more of an exercise in visual acuity than based on what I can feel. I rely on another sense entirely. Finally, it comes free, and out of habit, I rub the apple on my shirt to give it a clean, feeling the tenderness of my bruised subcutaneous tissue from the morning’s Clexane injection. I crunch into the flesh of the apple, wincing as the acid and texture burns against the epithelial cells of my mouth that have eroded from chemo. I should probably clean my teeth, but the white froth I spit out is always streaked with red, from gums that can’t repair themselves as quick as the chemo destroys them. I decide to have a coffee to wake me from my drug induced slumber from the night before, insomnia plagues me, I’m sure my pituitary has given up trying to regulate my diurnal rhythm. My hands loosen the milk bottle cap, the sensation is reminiscent of trying to rotate a cog that won’t budge, as all the subcutaneous tissue of my hands and feet are inflamed, swollen and angry looking.
I sip my coffee, I take a breath, and I remember I’m still alive to experience such things.
When I regale my life in such terms, I realise how quickly and to what degree the effects of chemo impact my life. It is very easy to create a tally of all the things that aren’t what they used to be before 85 rounds of chemo, and then count them as things to lament. I have long since passed the prime of my life, even though it should be ahead of me. Yet I don’t mourn these things, if I were to do so, I would quickly spiral into darkness, and so I choose not to. In someways 85 rounds of chemo have meant that a routine that has become imprinted into my life. A miserable routine yes, but routine somehow numbs its effects.
Furthermore, the fact that I feel at all is a gentle reminder that I’m still alive, and for now, that is what counts.
The three most recent rounds have become short sharp jolts of nausea. The recovery has improved since stopping Oxaliplatin, but the rounds, for reasons I have given up trying to fathom, have been rougher on the body. The 10th round was a revisit to 8 hours of hiccups, something I haven’t had since the first round of Avastin. Hiccups are surprisingly exhausting when they spasm the body in paroxysms of convulsion every few seconds for the course of a day. The exhaustion, seems to linger for longer than it should. The most recent round chemo has also seen my hands feet become particularly inflamed. You can see in the photo just how red my hands are and the skin that is peeling off.
The 5-Fluoro Uracil takes the blame for that one. Its a well documented side effect that I have managed to avoid for the most part. Everyday tasks like loosening the cap of the milk becomes disproportionally sore, not enough to stop me opening it, but enough to make me take notice. Fortunately it only lasts a few days, and has improved dramatically as I type.
My CEA continues to remain stable, as does the CT scan from about 6 weeks ago that I have failed to update specifically on this blog. All this means that I will continue with Avastin and 5-FU until either toxicity or non-response. Its much the same scenario as when I was on FOLFIRI for 66 rounds. The cost will continue at around $6,000 per round, but there are rebates that kick in from round 11 onwards meaning that the final cost will be closer to $2,500 -$3,000 per round. In retrospect, one might think that the fundraising target of $60,000 last year was naively low, although at the time it seemed impossibly large. What this means is that we have the luxury of continuing with treatment for the time being. It also means that if the Avastin continues to work, we could be in a position to ultimately choose between ongoing cost and ongoing life. In someways, if the Avastin were to stop working, it would make that choice null and void, and ironically easier.
Thats a bridge we will cross when we get to it.
This was a somewhat elongated update of my normal chemo yarns. The next round is going to be deferred by a week as Hannah and I will take on the roll of being camp doctors to 5000 youth at an Easter camp down at Mystery Creek, and then we head to Queenstown for a 7 day Autumnal escape which I am looking forward to.
Until next time…
After 6 rounds of FOLFOX and Avastin, it was decided that the toxicity that was associated with the Oxaliplatin was starting to get too much, and so round 7 and 8 were only Avastin and 5-Fluoro-uracil.
I have probably lost about 50% of my sensation to light touch at the end of my fingers, and the effects of Oxaliplatin can continue to worsen for a period of time after stopping. Those effects are also cumulative with each round and generally considered to be irreversible. The irreversibility is perhaps a worst case scenario, as when had Oxaliplatin 5 years ago, I got to the point where I couldn’t touch type or do up buttons without looking at what I was doing, but after about 6 months I had recovered at least 95% of that sensation back.
The sequelae of this change in regime are twofold. Firstly, chemo should be much more tolerable. Oxaliplatin was the most toxic of the three agents I was on, and it was a big reason why I had to stop work last year; it took longer to recover from, and I never rebounded back as well between rounds.
Secondly, there is a real risk that response to therapy will change, and not for the better. There is every possibility that the response that was demonstrated on the last CT could have been due to Oxaliplatin, or the FOLFOX/Avastin combination. Stopping it, and continuing on 5-FU and Avastin alone may very well have a much reduced efficacy. This is something that we won’t really know for a few more rounds. For the time being, my CEA levels continue to slowly trend down, indicating that after two rounds of only Avastin and 5-FU, there isn’t a dramatic reversal in fortune. I think on first principles, its safe to assume that in the absence of Oxaliplatin, I am on a less effective treatment, how that actually works out in reality is something that only time will tell.
Overall, the last two rounds of chemo have been an improvement, although I haven’t recovered as quickly between rounds as I might have expected in the absence of Oxaliplatin. Hopefully over time this will improve.
This week we are down in Dunedin visiting Hannah’s parents and family and enjoying showing off Elise. She was well behaved on the flight down and seems to be adjusting to the somewhat abrupt change in temperature at the other end of the country.
In other news, I have had a CT recently which showed further promising results, of which I will go into detail in another post once I have cast my own eyes over the report and images.
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…
I made the decision during round 2 of this chemo to wait until I was well before writing a blog update about it. The reason being is that I was likely to be in a better frame of mind, and I didn’t want to come across as being too tragic about the side effects. Of course, as I got well, I started to get busy with other things and round 3 descended upon me, followed by round 4.
So as I ascend out of the cloud of chemotherapy from my fourth round I figured an update was due.
Round 2 and 3 were equally as tough as round 1, with the noticeable absence of hiccuping, which was a relief. There is no doubt that this regime takes a tougher toll on my body than previous regimes. The nausea lasts longer and the fatigue equally so. The well time, as intimated in my previous post about my decision to stop working, has dramatically decreased between rounds. Hannah and I therefore make the most of this time and we have filled it well. Almost to the point of being even more tired during my well time because we have being doing too much.
This most recent round however is fraught with irony. I have actually recovered quite well from it with very little effort on my part, consisting of less nausea, and less fatigue. The irony is, for the first time in 78 rounds total of chemotherapy, I have had an ulcerative mucositis that has plagued me over the last few days. Each round previously has always involved a mild mucositis, and I don’t know whether it’s the new combination of drugs cumulating their toxicity, or whether an unknown factor has led to this, but I have been in an extraordinary amount of pain. Oral mucositis is where the mucosal lining of your mouth gets inflamed, the ulcerative part is where the inflammation reaches a point where that epithelial layer of cells die off exposing the submucosa and potentially tissue layers beneath that. We have all had mouth ulcers in the past I am sure, and on this occasion, I have had multiple LARGE ulcers all through out my mouth. Eating is like chewing razor blades and then bathing it hydrochloric acid. The result has been resorting to puree type meals and the use of Xylocaine viscous, a topical anaesthetic agent to numb it all. So far I am about 3 days into this episode, and I am hoping that they will be on the improve soon. I have a wedding on Saturday, shortly followed by Christmas, and it would be a pity for my palate to endure tasty food and pain at the same time.
In other semi-related news, Hannah is now 35 weeks pregnant today, which means any time from now is pretty much fair game, although January will be nice, and not when I’m on chemotherapy. Things have been progressing well, and the nursery is all set, it just needs a baby to make it complete.
Until next time…
As I settle into the aftermath of the whirlwind of generosity expressed a few weeks ago, I still am at a loss to express my gratitude at both the number of people who donated and the amount that was given. It has facilitated the next step in my treatment, which has paradoxically left me feeling pretty miserable in amongst a real sense that other people, both those we know and don’t, are journeying with us and supporting us.
I always remembered my treatment from the first line therapy with oxaliplatin 5 years ago with disdain. It is a chemotherapy agent that takes sometime to recover from and I am still feeling the effects of it now one week on. On the day of the infusion, I actually felt really good. There was a sense that maybe this treatment wasn’t as bad as I remember it. On the second day I got hit with hiccups. A benign common occurrence can become a tormentor when you endure 8 hours of unrelenting hiccuping. You cannot sleep, your muscles and chest become sore, and you just exhaust yourself. Hiccups are largely a manifestation of nausea, and can result from irritation from the diaphragm as well. These hiccups won’t succumb to any remedy that I know of, and I have tried a lot, you just have to wait them out. When finally they relented, I was able to sleep.
My sleep was then interrupted by what seems to be the next of the side effects, this time from Avastin. Supposedly it can cause tumour pain, although I’m not entirely clear on the mechanism, and this was what would wake me at three in the morning. Fortunately it was able to be relieved with some potent pain relief, but the paroxysms did persist for a few days.
Finally, the biggest of the side effects I have had to battle with over the past week has been extreme fatigue. Its a sense where no matter how much sleep you get, you just don’t feel refreshed. This has been what has stopped me from getting back to work on Monday as I had planned, but hopefully tomorrow, two days later, I will be able to do so.
So all in all it has been a rough 7 days. I guess it was to be expected but that doesn’t make living through it any more pleasant. Fortunately I move on to the well phase now between cycles and resume normality as much as I can. I suspect the next few weeks of life will involve some significant decisions on my behalf with regards to work and planning exactly how Hannah and I want the next few months of our lives to play out.
Until next time…
The radiation has finished.
This post is in actual fact not a fair reflection of when the radiation did finish however. It actually finished two weeks ago, but the business of not working has interfered with getting around to post an update.
Overall, radiation struck me a lot harder than I anticipated. There was some nausea that was tolerable, but the main symptom that really took its toll was an indescribable fatigue. I have now been off work for six weeks. Initially that time off work was like an unexpected holiday, albeit one filled with the irrational excess of slumber required for sub-normal function, but as the days accumulated, it has a become a tedious monotony of fatigue, sleep, and boredom. Having enough energy to be bored, but not enough to sate that boredom is a subtle but effective form of mental torture. I am well and truly ready for a change back to how it used to be. It has only been in the last 4 or 5 days that I have been able to get up in the morning and feel like I can actually make something of the day that goes beyond TV and sleep.
At this stage, I’m not quite up to going back to work, but I anticipate that I will be able to get back to work next week (starting Oct 14). I am really looking forward to be able to get back to doing something I enjoy, and which in itself is energising.
In the next couple of weeks, I will also have a repeat CT to establish the effectiveness of the radiation, and how naughty the liver lesion has been in the absence of chemotherapy. The pencilled in plan is to start chemotherapy again on labour weekend, this time a combination of 5-FU and Oxaliplatin (FOLFOX), but this will be confirmed closer to the time and will depend somewhat on what the CT shows. The management of the liver lesion at this stage has yet to be established, but I suspect that a lot of that will depend on how responsive the retroperitoneal lesions were to the radiation, what the CT shows, and whether or not a further period of stability will need to be established on the altered chemotherapy regime.
For those whom may not have heard yet, as an adjunct to the baby news. Hannah is now (almost) 25 weeks along, and we are having a baby girl. Pink items have already started to become thematically appropriate, and the yet-to-be baby room has now advanced from a box room to just a room (with a nice new stroller in it)…. Its a work in progress.
Until next time…