Home > Blog > Avastin Round 9, 10, and 11.

Avastin Round 9, 10, and 11.

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.

IMG_2766

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…

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  1. Geoff
    April 14, 2014 at 12:47 pm

    Thanks for the update. Praying for you every day by name. Father we ask for you to heal this wonderful man of God in Jesus name. Amen

  2. Cat Jackson
    April 14, 2014 at 1:09 pm

    Hi, i met you briefly in the hallway at chemo the other day. I am on the same drugs as you and I am thankful for your updates as they explain things to me just that little bit more as I feel a little lost about the side effects etc. My wonderful friends have raised the money for Avistan twice now and the wonderful lady that organised my last fundraising said she would do it every week if she had to. Friends and family have just blown me away with Kindness. Anyway, I hope we get to say Hi at chemo next time. Thank you again. Cat

  3. Dyana Parore-Connell
    April 14, 2014 at 2:52 pm

    Thanks for the update. Sorry to read about the side effects etc your body going through. You are one remarkable person. The positivity you express is incredible. I admire your strength and courage. Hope you and Hannah enjoy your time at #Camp# and your much deserved break/holiday in Queenstown. Take care, God bless

  4. Louise Reynolds
    April 14, 2014 at 5:20 pm

    Really appreciate your blog posts, Jared. have a good time at Easter Camp with Hannah and Elise and 5000 young people!
    Love and prayers from the Reynolds Whanau xoxo

  5. Hannah
    April 14, 2014 at 10:12 pm

    Wow! It sounds really tough. Thanks for sharing the little details which make it more understandable. Hope you, Hannah and Elise have a great time at Easter camp!

  6. Rob Foster
    April 15, 2014 at 7:36 am

    Enjoy the time with your family. Enjoy life, enjoy living…I hate having hiccups with a passion, yet every round I’ll get them on day 2 & 3,sleep, what’s that? I cat nap in the afternoon, the evening Then I’ll be awake from 2:00 a.m. but I guess that’s life on a chemo cycle c’est la vie. Thankfully I;m only up to 35 rounds.

    Keep the faith my friend, go & watch your daughter sleep & enjoy it.

  7. Tui Madsen
    April 15, 2014 at 9:30 pm

    Jared you are truely an amazing work of art and a spiritual inspiration to many. I look forward to working with you and Hannah next weekend. Blessings galore

  8. Dee Karena
    April 16, 2014 at 2:06 pm

    Hi Jared. Thank you for sharing your thoughts and giving us regular updates on how you’re coping. Your hand looks like you’ve left it in the sun too long – hang on *hands you a trident and some pointy horns* . There ya go. Dee

  9. Theresa
    April 28, 2014 at 8:37 pm

    Wow I am speechless at your positivity,this post, and adventures ongoing with camp and Queenstown in autumn!! That will be spectacular. friends on Facebook have been posting autumnal photos this week from there :) Thank you for the update, many many Blessings in small places and much Peace deep within.

  10. May 3, 2014 at 11:48 am

    I hope rounds 12 and 13 haven’t been so debilitating.
    Best wishes.

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