Things never happen the same way twice

20180427 - shutterstock_330822179When Lucy Pevensie meets Aslan on her second trip to Narnia in Prince Caspian, she asks why he didn’t jump in and save them like the previous time in The Lion, The Witch and The Wardrobe.  Aslan answers, ‘Things never happen the same way twice, dear one,’ which sums up precisely my feelings about this second go at chemotherapy.

The first time I had chemo back in 2014 was a much more serious affair. Once a week for the first 12 weeks I travelled to the Northern Beaches Cancer Centre (which used to be at Manly Hospital) to have the drugs administered intravenously while sitting in the outpatients ‘chemo circle’.  My cancer markers failed to fall below recommended levels during those 12 visits and for that sin I was prescribed another nine weeks of F.E.C. treatment, three blasts, three weeks apart. F.E.C. is a triumvirate of heavy duty chemotherapy drugs that rejoice in the names of Fluorouricil (a.k.a. 5FU, I kid you not. Can’t even…), Epirubicin and Cyclophosphamide.

To say I felt F.E.C.ed by this treatment doesn’t quite cover it. Prior to having each intravenous application I’d get shot full of anti-nausea drugs and steroids to reduce inflammation. I even got to pop a Valium in a bid to induce a sense of ‘all is well’ before treatment and, with any luck, wipe my memory of how foul the whole experience was. It would take about four hours for the go-to-my-happy-place drugs to wear off after the F.E.C.ing – just enough time for me and my nursing sister sister to have some lunch, and for her to bring me home and tuck me into bed before I went down like a concrete cloud.

Yes, intravenous chemotherapy is not for the faint of heart. After it was all over, I told my oncologist (with lashings of hubris, if memory serves) that, should I be so unfortunate as to have a relapse in the future, I categorically would not undergo chemotherapy again. Something in my dear doctor’s expression at the time told me I’d probably eat those words – and so I have. But as Aslan so wisely said, ‘things never happen the same way twice’.

The 2018 version of being on chemo is vastly different. For one thing I can take an oral tablet in the privacy and comfort of my own home – no travelling to a chemo circle at a hospital somewhere to be hooked up to a drip.  That all sounds simple enough, so much so that I often find myself down-playing the treatment. If it’s not serious enough to go to hospital for then it’s not really serious, if you get my drift.

And it is true to say that other people tend freak out more than me when they hear I’ve relapsed and have to have chemo again, bless them. I spend a lot of time contextualising my condition to friends and family saying things like, ‘the relapse is very early stage’, or ‘it’s only oral chemo that I can take at home’. My beloved husband usually shoots a death stare in my direction when he hears me doing this, if you’ll pardon the unfortunate reference to death.  Any kind of chemo is serious business and I’ve got the side effects to prove it, even if they’re different and not as severe as last time.

You may recall me mentioning in my last blog that I’m on a chemo-hormone blocker combo. The chemotherapy is called Palbociclib, taken in conjunction with a the hormone-blocker Letrozole. By way of a recap, the latter starves the cancer cells of the hormones they feed on, paving the way for the former to nuke them.  I take the hormone-blocker every day and the chemo drug for 21 days straight, with a break of seven days for what the medicos call ‘recovery’.  (This is because chemotherapy plays havoc with one’s neutrophils or white cells. If the count falls too low then the patient is at greater risk of infection, thereby complicating things a bit if one is also fighting cancer.)

Palbociclib and Letrozole are quite heavy-duty drugs that come with their own individual lists of side effects. Like any sensible patient, I take heed of these lists, but only to a point. While they are useful for highlighting things one can prepare for (such as stocking up on anti-nausea homeopathic medicine and getting a really short haircut in the event of chemo-induced hair loss), they can be auto-suggestive, I find. My hypochondria-drive tends to engage a little too readily and before I know it, paranoia about every ache, pain and sensation materialises into the dinner party guest who simply refuses to leave when the evening has concluded!

So, I don’t want to labour the point about side effects here and bore you and myself to tears, dear readers. In any case, this time around I’m attempting to be more Zen about the whole chemo experience. Instead of ‘bracing myself’ for the onslaught I am trying (with fluctuating levels of success it has to be said) to remain open and accepting of whatever presents itself. Here’s a quick summary of what happened in the first round:

  • Within 24 hours of taking the first chemo tablet I started to feel woozy and a bit unsteady on my feet, like I’d just gotten off a long-haul flight.
  • At the end of the first week, a sense of queasiness kicked in. I wouldn’t go as far as to call it nausea and I never came close to throwing up, but it did make me want to lie down all the time.
  • By week three, I was so off the planet that driving was a no-no and there were a few days when I never made it out of my own front door. Thank the Lord for Netlfix and Woolies home delivery!

During my seven days off the chemo drug, while still taking the hormone-blocker drug, I felt only marginally better. This makes me wonder if the side effects of crushing fatigue, body aches and pains, headaches and hot-flashes that are a bit worse than usual, can be attributed to the Letrozole rather than the chemo. Who the F.E.C. knows?

And while all this sounds a bit awful, these side-effs are not a patch on the 2014 version of chemo treatment. Because I’m not on steroids to counteract inflammation this time, I’m not suffering ‘roid rage or that terrifying disconnection-from-all-that’s-good-in-your-life sensation that so bedevilled me last time. That’s a huge plus. Additionally, without wanting to sound too much like the apocryphal Pollyanna here, there are many positives to come out of this whole situation:

Chemo sucks but it works! – Since starting the treatment I’ve had weekly blood tests to keep an eye on my white cell count as well as cancer markers 125 and 15.3, the unfettered escalation of which got me into this mess in the first place. As one might expect, the white cell count has dropped sharply which means I’m ‘immuno-compromised’ and have to be careful not to succumb to a lurgy. (So it’s no kissing and hand sanitiser for everyone!) The truly excellent news is that both CA125 and CA15.3 are on the decline so we know this chemo/hormone-blocker combo is doing the trick. Cowabunga!

Enforced rest ain’t such a bad thing – Spoiler alert, people. My next blogpost will be about my work addiction. Because I didn’t know how I would react to this latest chemo onslaught, I decided to do the sensible thing and step back a bit from my publishing concern, For Pity Sake. This has caused what I believe are symptoms of withdrawal – irritability, restlessness and a growing sense of self-deprecating powerlessness – a sort of spiritual disquiet, if you will. I haven’t gotten to the bottom of this yet but here’s one thing I do know – the chemo/hormone-blocker combo affects my body in such a way that lying on my bed, staring out the window is frequently all I am capable of.  My mind tells me I’m a lazy cow, that I should get up and do something useful – like folding washing, preparing dinner, or checking emails – but I can’t physically rally myself to do it. Accepting this state of affairs without berating myself is a new thing for a control-freak like me – very new. Curiously, the side-effects of the drugs are enforcing this physical need for rest. Clearly, I can’t be trusted to to do the right thing and rest properly in order to heal, so the Universe has stepped in to take things out of my hands.  I’m also being taught a huge spiritual lesson in the process – how to surrender. I may have intellectually understood this concept last time I had chemo but this time, I’m being forced to actually live it. More on this soon.

No time like the present to get one’s affairs in order – When I tell people I’m taking this opportunity to update my Last Will and Testament, the initial reactions are usually fear and denial. They know I have a life-threatening physical condition but perhaps I’m not telling the whole truth about it? Surely things must be worse than they sound if lawyers have been engaged? At this point I usually switch to consolation mode, telling my concerned friends and family that there’s nothing untoward about my little Estate planning venture. While I don’t believe my demise is imminent, I wholeheartedly agree with Edna Mode, the super-suit designer in The Incredibles. When asked what sort of danger Mrs Incredible’s baby of the yet-to- be-determined super-powers might be in, Ms Mode calmly states, ‘I’m sure I don’t know, darling.  Luck favours the prepared.’ For the last time people, adjusting one’s Will is not morbid, it’s sensible and considerate. I rest easier knowing I won’t leave a mess and that I’ll spare my loved ones the pain of speculation (and possibly an unseemly bedside scuffle) about my wishes for my own care should I become unable to articulate them.

And now, seeing I’ve just started my second 21-day chemo cycle, I leave you with another exchange between Lucy and Aslan in Prince Caspian. Lucy confesses that she wishes she was braver to which Aslan responds, ‘If you were any braver, you’d be a lioness’.

20180427 I'm going to NarniaDespite any evidence to the contrary, I know I am only ever courageous when circumstances back me into a corner. Undergoing chemotherapy treatment for the return of my cancer is a ‘must do’ not a ‘nice to do’ so yes, like Lucy, I wish I was braver too. But while there never seems to be a huge, regal-looking lion with the booming voice of Liam Neeson around when I need one, this little cartoon I found on social media recently did prompt a much-needed laugh.

All the breast, dear readers.

Comments

  1. Sara Dowse says

    Rest big, dear Jen. I am now in Melbourne in the exact place we were in October – the Novotel in St Kilda. Am being treated royally, thanks to the universe. Will debrief when it’s all over. The Melbourne Jewish Book Week is being held in the St Kilda Town Hall. Start first session mañana. So give herself a well earned break and forget the Methodist upbringing. Lots of love and thanks winging your way

  2. says

    Hey Jen,
    Thanks again for your incredible writing! You are so talented, inspiring and funny. I miss our talks. Wishing you grace, insight and joy in this yet again, another surrender. I am looking forward to reading your insights on work addiction. Having started a new career in real estate, which is a huge learning curve,, I have a question myself if I could possibly be returning to the “high” of running on adrenaline! maybe I’ll have to go through another withdrawal from running on adrenaline, but at least I won’t get Alzheimer’s with all the learning. Now that is truly a braingym! There’s always a silver lining! Having said that, I’m still having trouble finding one for Trump! Hideous!!! And the biggest driving factor for me wanting to return to live in Australia. Who knows what the future will bring …:..

  3. Caroline says

    Hi Jen. Another extraordinary piece of writing. Please don’t be so hard on yourself. Your bravery is something to behold.

    I can’t find a lion that sounds like Liam Neeson – but I found a great meme which sadly I can’t include in my comment – I send separately.

    Love Caroline

  4. Dorothy Johnston says

    That’s great news that the cancer markers have declined! With regard to For Pity Sake, if it’s any consolation, I’m chugging along with my revisions. Of course it would be good to talk to you about them, but I think of you as a wise voice in the background! Rest up and take care.

  5. Jan van der Meer says

    Lovely Jen. Glad to hear the cocktail is going what it needs to! Take care and hope the resting gets easier. Jan xx

  6. Madge the Badge says

    You are a Lioness Jen….. you’re our very own Lioness – who doesn’t like her meat too rare.

    I always get a great nudge when I read your work… like being a control freak myself in not wanting to put anyone out or be a burden…. or when I see litter on the road!!!!!

    But sometimes I just need to rest up and let the body rest up – and not think too much… or plan too much…. just let things unravel, especially accept them if the unravelling isn’t the way I wanted

    So thanks for the gentle but genuine good tip…. rest… I remember a football trainer replying to a player who asked: ‘What can I do to recover quicker?”

    And he said: “I let you in on my secret…. it’s three things…. sleep, sleep , sleep”

    I just hope your blood counts (not the white ones) keep declining and your recovery allows you to sleep soundly and securely….

    Much love xxx

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