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…
Well, again I have been slow to update. In large part it has been because between rounds of chemo I have been working long hours and burning the candle at both ends. The net result has been lack of time or energy. Paradoxically, the long hours whilst in part exhausting when run in parallel with chemotherapy, have been satisfying. I am learning that I am increasingly finding an affinity for general surgery as a specialty, and that it would be the career I would embark on if not for current health limitations. Having said that, there are workings underfoot that may come into play once I know the outcome of my next CT scan and have a little more certainty about my expiry date.
The last two rounds of chemo have involved some experimentation of my anti-emetic medications, and to somewhat limited success. Prior to round 45, I took my apprepitant a little earlier before my round, and arrived late so commenced chemo a little later than normal. What I discovered was that for the hour before chemo when I had taken the apprepitant, I experience some fairly horrendous anticipatory nausea, and chemo hadn’t even started yet. So, in the spirit of the scientific method round 46 was a trial involving no apprepitant as this anti-nausea tablet seemed to be ironically causing nausea.
… This trial of sample size n=1 was a complete failure. Round 46 was easily the WORST round of chemotherapy I have had to date. Dry retching became vomiting, and vomiting became regular. I spent a lot of time with my head in the toilet, learning that tim-tams aren’t the best to regurgitate, and lemon powerade retains its flavour for quite sometime after being ingested. The irony of such a terrible round was that I recovered fairly well afterwards, perhaps even better than previously. The lesson for this failed experiment is that my apprepitant will be maintaining a permanent fixture in my anti-emetic regime.
Currently, I’m doing a small set of night shifts for work, and this weekend marks the crossover from my surgical run to an ED run next quarter. ED will only be 0.5 full-time, but since there are plenty of vacancies still, I will have the chance to fill in the gaps with a few locum shifts.
In other unrelated news, Hannah and I are only 3 and 1/2 weeks away from a 3 week holiday in Italy. We are really looking forward to that. Also I have a CT scan in a few weeks which will be a major stop/go intersection for the future ahead. Is the cancer responding, or is it progressing…..
Only time will tell…
Until next time.
It creeps in and attacks one of the most fundamental aspects of what it means to be human, it attacks the need to eat, and the need to sate hunger. Hunger is one of the most fundamental human desires, it signals we are alive, that we want to survive. It means that there is something inside of us that must strive to live and consume energy in order to do so. It manifests itself at our most fundamental level of physiology, when we convert glucose into ATP, and it manifests itself in our day-to-day, at a social level, when we sit down to a meal.
Nausea destroys all of that.
In many ways nausea destroys one of the key things that make us alive, by destroying a fundamental desire that is integral to living. For three days, I was denied this fundamental element of life.
I had really wished having had 7 months off chemo would have given my body some time to recover and improve how I tolerate it. To some degree, this has been the case, but truthfully, the experience was a harsh reminder of some the least pleasant times of my life. The experience of chemotherapy is unique to each agent used, and re-starting came with some degree of psychological trauma as I relived a previous nightmare, one I can’t wake from. With it came the slow remembrance of a previous life (albeit only 7 months ago) that was easy to forget, but painful to recall.
This round was re-initialisation into the future months, so whilst I paint the experience with melodrama, what it really did was force a reset of my world view. Seven month of chemo-free life tempted me into dreaming of an alternative reality that in the end never materialised. I now have to adjust to my new one.
My new reality in actual fact isn’t that bad, at the end of the day, I am still alive and incredibly blessed.
The pain of chemo reminds me of this.
It is ironic that even though suffering sometimes strips us of feeling alive, it’s existence in our lives is a vital reminder that we are indeed still living.
And perhaps that is the biggest blessing of all…
Till next time…
Well, that round of chemotherapy was one of the roughest yet. Dry retching over a toilet bowel, awake for only a few hours each day, and unable to eat for 36 hours. I didn’t quite vomit, but for the first time ever, I really wanted to… I just couldn’t make it happen.
It probably didn’t help that I went into the round with 50 hours of work clocked up on the mon-thurs prior to friday’s dose of toxins. I have long since decided there is no rhyme or reason to chemotherapy and it’s side effects. Each round is as unique as a fingerprint, yet follows the same theme of progressive worsening.
I’m pretty exhausted. Not just in a physical sense, I can sleep to regain that, but in an emotional I-have-just-had-27-rounds-of-chemotherapy sense. I need a break to let my body recover, and I wish cancer would respond to less brutal treatment regimens.
I get the small break, but not the change in treatment. My next chemo is 3 weeks away instead of the standard 2. I have just over a weeks leave, and have shunted the next round of chemo to accommodate it. it’s a nice temporarily relief.
’till next round.
After having a month off chemo, I hit back with chemo number 23. Skipping a round is simultaneously good and bad for the soul. It is a nice reprieve from the pleasantaries of chemotherapy, but at the same time, having too much time off lulls you into a false sense of security that everything might be normal…
The reality is for me, apart from my bowel obstruction 2 years ago, the only way in which cancer has actually impacted my life is through the effects of chemotherapy. I have never had any associated cancer pain, any decline in organ function, or any mass effects from the cancer impinging on nerves or vascular structures. Therefore, the absence of chemotherapy is like a little window into what life might be like without cancer.
This round featured less intense nausea, but an increase in the duration of nausea. It wasn’t really until Monday evening that I began to feel my normal self. I also felt a bit under the weather on my first 2 days back at work. I was functional, but feeling pretty tired for a lot of the day. I don’t plan on breaking from my fortnightly schedule until march now, so…
Round 24 is next….
I get a 4 week break from chemotherapy! And that is about the biggest feature of this round, the fact that there is a break afterwards. Hannah and I plan on going to the Gold Coast in about 10 days with some friends of ours for a week. Its the first holiday I’ve had since New Years. Which I think is pretty impressive since I have had to adjust to last year being virtually work free, and this year punctuated by fortnightly chemotherapy.
Interestingly, I feel as though I’m more ‘on top’ of my chemo these days than previous rounds. I’m not sure if its my body adjusting to the toxic onslaught, or whether I’m just learning to manage my symptoms better. Either way, I feel as though I bounce back a bit quicker each time. That being said, Friday is still the worst part of the regime. Unrelenting nausea tends to not abate no matter what anti-emetics I throw at it.
Beyond all of that, the next chemo update will be in 4 weeks, which will be the final round of the trial I’m on. I then continue on a pretty similar regime minus the trial drug (of which I’m pretty sure is placebo anyway).
Until next time…
Round 9 has come and gone. This is how it played out:
9.30 am appointment. I get hooked up to the IV fluids and get one hour of the trial drug I’m on. I then get 1 1/2 hours of the good stuff, usually feeling rubbish by about 30 minutes out from the finish. 1430, I am released and drive home. There should probably be laws about driving on chemo… but there aren’t.
Home = lying in bed, nauseous, trying not to vomit, trying to sleep off the ill feeling. Generally I don’t eat much on Day 1, it doesn’t agree with me. Cleaning my teeth makes me want to vomit, something to do with sticking a plastic thing into my mouth.
Wake up after a pharmaceutically induced sleep, generally grab a quick porridge, and then hit bed again. I usually then wake up around 12.30pm, have a small lunch, and hit bed again. I wake up at about 3.30, still feeling ill, trying to feel positive. Small meal, some TV, then back to bed for the night, another pharmaceutically induced sleep.
Oddly still not feeling better, actually a little worse. I have to pick Hannah up from the airport, which I do, and then go the hospital at 12.30pm to get my home infusion disconnected. Still feeling like rubbish, I go home, sleep, and generally be an antisocial husband. Yet another pharmaceutically induced sleep, but this time compounded with waking at 3.30am with acid reflux so I grab a glass of milk. I dont manage to get back to sleep.
Nausea is unusually lingering on this round, I’m usually better by the Monday. Ah well… Still have my post breakfast sleep, but its listless… very unpleasant. I spend the day battling with the restlessness of boredom, and the fatigue that prevents me doing anything about it. Watch some backlogged TV episodes on MySky, catch a Fatso DVD. Meals consist of re-heating leftovers from the previous few days that are strategically accumulated. Maccaronni cheese is about as safe as I can go. I try very hard not to induce hiccups from eating too much, a manifestation of the nausea.
Tuesday. Still feeling mild nausea, but so much better than Day 1. CT scan, followed by chest x-ray. I stuffed up the eating timetable on that one, so I didnt eat between breakfast and dinner. I rewarded my stuff up with comfort food from Wendy’s. I managed to get out and pick up a mattress from the other side of auckland for Hannah’s brother who is staying later this week. I’m still tired. Technically should be at a lecture in the evening, but wag it to revise my obstetrics and gynaecology that starts the next day at Middlemore.
Return to work…..
And then bring on round 10 in 10 days time!!!