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…
Earlier this year I was contacted by the editor of OHBaby! Magazine to write a piece for their next issue. OHBaby! is a quarterly magazine targeted at parents of 0-5yr olds that covers everything from issues around pregnancy and parenting tips to learning and development. It also reviews baby accessories for which I have recently discovered there are a plethora of.
We have been contacted by many media outlets of varying descriptions for interviews or stories on our situation. On the whole, we have decided to decline most of these requests because publicity for publicity’s sake is not something we want to get caught up in. OHBaby! however came across very differently. The editor, Ellie Gwilliam, came to visit one morning to check us out. Her request, was not to do a story on us per sé, but to get me to write a piece around creating a family ethos, and how you communicate that to your children. I am obviously in a rather unique situation, and such an idea requires thought and contemplation to address the apparent difficulties of doing this when I am absent. Ellie thought this was a valuable perspective.
The reason we went ahead with this was because this was not just another story, but a chance to actually write and contribute in such a way that will hopefully enable other families to think about how they communicate their values to their children. Furthermore, we found Ellie to be great to work with, with her sensitive manner and clear vision of what she hoped to achieve.
The article itself is unfortunately not fully available online unless you pay to view it, or have a subscriptions to the magazine. It went on sale on April 7, and will be available for the next few months. HERE is the link to the online teaser in lieu of the actual magazine or subscription, or you can click on the image above.
Otherwise, you should go buy the magazine instead. 🙂
Until next time…