WORK WORK WORK

Power clashing at the market, #chemochic

That last post makes it sound as though during those first crazy and intensive months, Hunter and I were in a constant state of misery.  We weren't, but it’s true that there were plenty of low points as we came to understand the new reality. I was bewildered, anxious, frightened, overwhelmed. Angry, exhausted, what else can I put in my Sad Cancer Wordfind?

We tried to keep it balanced but there was no chance of us falling into Pollyanna Land. Unfailing positivity is very popular in the cancer world. You see it all over social media. People are no longer cancer patients, or even survivors, but cancer THRIVERS.

“You got this!”

 “We are going to KICK CANCER’S BUTT!!!”

“I just have a really good feeling about this. I think we are going to beat it”

 “You’ve gotta stay positive, all the time. Thinking and acting negatively is what causes cancer in the first place”. 

There are cancer survivors who feel so positively about their cancer ‘experience’ that they feel it’s enriched and improved their lives, to the point where they’re glad it happened. They see themselves as warriors in an epic battle with cancer.  I can certainly see the logic in it, especially the battle metaphor when they’ve ‘won’ or achieved a remission.

We might have almost felt like winners from the start. The statistical likelihood for patients in my age group surviving Hodgkin Lymphoma (HL) 5 years out from diagnosis is 97%. You can’t get much better odds. But we could not bring ourselves to utter those words ourselves. Recent experiences watching some of our close loved ones come out the loser despite favourable odds, and Hunter’s experience with some patients at his work had made us very cautious. We did not want to assume the win yet. Besides, the cantaloupe. You can’t feel super-positive about the future when a 15cm cantaloupe of malignant tissue grew in your chest cavity without you knowing. I would need a bit of reassuring because I went back to feeling secure about my future.

Dad visiting me and doing the crossword when I was in isolation
with suspected influenza (later cleared)

Amidst the worry, and my chemo side effects, and suddenly living a life that revolved around Royal Melbourne Hospital, there were nice things too.  After a hectic few years where we’d both been pushing ahead with careers (Hunter had started his Clinical Psychology Masters, some nights driving an hour in peak hour traffic from Epping to Hawthorn for classes. Meanwhile I was working 3 days as a legal PA and cramming in art projects for corporate clients. And OH, we’d just had another kid), the wheels of life now slowed right down.  I spent a lot of time having cuppas with my parents, watching Saskia kick around on the floor.  Dad would sit with me in hospital waiting rooms, or during chemo, or if I got an infection and was admitted to the oncology ward, for hours.  We would talk a bit, do the crossword and then maybe both of us would fall asleep.  I was rediscovering, after years of frenetic restlessness and activity, the art of companionable silence.

Beautiful, thoughtful care package from friend and colleague Michelle Mackintosh

The overwhelming generosity of friends, colleagues and relatives deserves its own post, no, its own BLOG. People would drop off cakes and Bolognese sauce and fabulous bunches of flowers.  Friends living overseas would send care packages of beautiful body lotions, scarves lovingly searched for in London flea markets and treasured books.  Hunter went back to work some time in round 1 of chemo after a month of carer’s leave, and was working hard to keep it together, ably assisted by our parents, so the kids would have a happy, stable homelife.  On weekends, he would drop over to friends’ places with the kids, and whilst all the kids would play in the backyard he flopped on one of the spare beds for an uninterrupted, desperately needed nap.  He was thereafter fed.  We almost never had to cook because my friends set up an online meals roster, which we could start up and put on hold as needed. Beautifully cooked homemade meals, which covered all our nutritional needs and the vagaries of 2 children under 5, were regularly delivered to our doorstep. When I was well I would go to my local cafe, La Paloma and see my Brunswick buddies. We would do the crossword and the quiz from the Age and talk about Brunswick, the world and life in general. I’d been going there since we moved to Brunswick, through both pregnancies and babyhoods, and I kept trying to go as much as possible throughout chemo.

Being a patient became my job. It was my new career. Other people looked after my children regularly.  Saskia was too young to join Koen at his crèche (which was now fee-free as I was unable to work, thank you Australian tax-payers).  Luckily, Mum and Saskia loved each other and had a whale of a time exploring Brunswick cafes and fabric shops.  Further proof I had a new career: I was dealing with paperwork and managing a diary, along with waiting for and attending appointments. Everyone knows that is what jobs are about. I was exhausted when I got home.

Mum in 'Janny' mode - simply the Master Grandmother, no
common term covers her skills, so a unique one had to be invented.

Koen at kindergarten on Footy Day.

Funnily enough, I started to take extra care with my appearance for appointments. There was no one to impress but I was dressing like I was gunning for promotion – what is it they say about dressing for the job you want, not the job you have? The job I had called for comfy tracksuit pants, PICC-line-access-friendly tops and beanies. I seemed to be dressing for the job of textiles curator for a private craft museum, which would be a pretty awesome job, come to think of it. 

Showing off a handsewn, PICC line-friendly dress (bandage still visible).

If I was gunning for a promotion, it was to be the best patient I could be. I was perky, polite and obedient. I kept saying to staff ‘don’t feel like you have to manage me, just tell me what you need me to do’.

I think, at bottom, it was two things. Firstly: that old psychology chestnut, control. In a situation where I was wildly, terrifyingly out of control, I could iron a frock and powerclash my headscarf and swan into the day oncology unit like Audrey Hepburn in any of her films before the 50s ended and she realised she couldn’t act. I could do that!

Secondly, and more interestingly: I was terrified of doing something wrong and not giving myself the best chance. I didn’t want to be forgotten, or thought to be difficult, or reluctant to do treatment. I was like the nerdiest kid in class who not only aims for straight A plusses, but also has the neatest collar and sharpest, freshly ironed pleats. If the RMH day oncology unit had had a library monitor, I would have put my hand up for sure. Well, you never know what might help. But I was going to be DELIGHTFUL and DILIGENT, the kind of patient you’re almost sad to see cured and off the ward.

Being on a 3 week/21 day chemo cycle, a pattern began to emerge, driven by my capricious and mysterious white blood cell counts.  White blood cells are the infection fighters, and a count told me how safe I was from infection, so it dictated activity, who I saw, what I ate. They would dip and dive and leap, sometimes infuriating in their sluggishness, sometimes making terrifying leaps overnight. Days 8-14 were the ‘danger days’ when I would have no protection from infection and often ended up in hospital with a fever and infection.

For example, on one round of chemo, it was about day 12 and I was starting to feel like I had dodged the white blood cell bullet, so I happily spent the weekend at the beach house with my family and caught up with some friends for coffee and lunch in Barwon Heads.  As we were driving home to Melbourne on Sunday afternoon, I felt a bit achey in the forearms, which I put down to pushing Saskia’s pram along the beach. By the next morning, I had a fever of 38.3° and was lethargic and queasy.

Hospital, a still life.

This is about the third time something like this had happened, so we knew the drill.   As soon as I got a temperature above 38°, I had to go to the Emergency Department at Royal Melbourne Hospital and they would start me on a course of rehydration fluids and broad spectrum antibiotics.  They would take samples of my blood to check if there was a virus and to see what else was going on.  You can basically tell someone’s life story from examining their blood, apparently.  What their organs are doing, how effectively they’re converting the air they’re breathing to oxygen in the bloodstream, whether they’re eating enough bananas.  I would hang out in emergency until a bed was found for me in the ageing, cramped oncology ward on level 5.

Hopefully I would have my own room in the cancer ward, but there were no guarantees. Sometimes, when the oncology ward was too full, they would put me in the infectious diseases ward on level 9. The ward is 20 years old but feels even older.  It has the feel of Soviet-era Eastern Europe, maybe from a documentary I saw once about childbirth in Kiev in the 80s.  Maybe it’s the Spartan furnishings in stainless steel, the liberal use of Hospital Green paint, the faded prints of vases of flowers on the wall. However, the nurses up there are DELIGHTFUL, friendly and funny.  They offer to make you a cup of tea. They have time for a chat. Apparently, if Ebola comes to town, the infectious diseases ward on level 9 is where patients will be treated, so I was always very nice to the nurses there. They didn’t necessarily know what to do with my PICC line though, and cancer is not their speciality, so it was still best if I ended up on level 5 where the cancer specialists roamed and you are less likely to be passed over for an urgent case closer to home.

How you will respond to chemo varies widely.  Over the 6 rounds of chemo I had in 2015, I was hospitalised 4 times for infections.  The first time was for a surprise hair follicle infection; I was out after 24 hours on oral antibiotics, and it cleared quickly.  The other 3 times were all episodes of ‘febrile neutropenia’ – where you are neutropenic (low white blood cell count) and you get a fever (febrile). I was in for a few days each time – given IV antibiotics and fluids, and when the infection was under control (no fevers anymore, generally on the improve) I’d be sent home with oral antibiotics. 

PICC line on show, with bonus sleeping baby.

Because I was inexperienced in hospital matters and had a pretty low anxiety threshold, each hospitalisation seemed like a crisis at the time, although they were in fact all low-grade fevers.  I would lie in my emergency trolley bed, recalling scenes from Victorian era novels of sweaty heroines dying in their beds by candlelight, all because they WOULD walk in the rain. Surely that would be my fate now? No, a registrar would flatly contradict me on his ward round.  On a scale from 1 (minor) to 10 (fatal), my infections were about a 3.  Still, the fever, the vomiting, lethargy etc made me feel pretty close to death, or at least, really pretty bloody rotten.  Those serious fevers I’d heard about would put you in the ICU and take you very close to death. People survived them at a great price – organ damage, weeks in hospital, long delays in treatment.  I was eternally grateful that I avoided that outcome.

Otherwise, generally, I had plenty of fatigue (although with a 3 year old and a baby, who wouldn’t?), but almost no nausea.  Another patient on the same chemo regime as me was only admitted once for an infection but was essentially crippled with nausea the whole time she was on chemo.  It didn’t matter what amazingly advanced anti-nausea drugs she took, she was intensely pale and on the edge of vomiting the whole time.

Advances in anti-nausea drugs (or more correctly termed, antiemetics) in recent years have transformed chemotherapy. In fact, at a Leukaemia Foundation conference in 2015, I heard that a leading medical journal had listed the improvement of antiemetics as one of the top 10 advances in cancer treatment in the past several decades.   Once upon a time, the nausea could be so bad that treatment would have to stop altogether. It would be literally impossible for the patient to keep anything down. They would lose huge amounts of weight, weakening to the point where it was dangerous to continue treatment.  Strong antiemetics such as Ondansetron now keep all that at bay and make many more patients treatable. Indeed, plenty of patients are able to go to work and maintain an exercise regimen, unimaginable possibilities before these new generation antiemetics.

 There are two chemo options for Hodgkins Lymphoma - ABVD and BEACOPP. Most people are put on ABVD, but in order to really ‘blow it to the scheissen hausen’ as the Lymphoma coordinator would say (I don’t know why she thought it was so funny to mangle German swear words like that), I was put on Escalated BEACOPP. The acronym BEACOPP stands for the drugs they administer: Bleomycin Etoposide Adriamycin (doxorubicin) Cyclophosphamide Oncovin (Vincristine) Procarbazine Prednisone.

On day one, usually a Monday, you get Etoposide, Adriamycin and Cyclophosphamide through an IV.  The actual drip takes about an hour. You start taking Prednisone (steroids – 60mg a day for 2 weeks) and Procarbazine (for a week), both as tablets. On day 2 and 3, you just have the Etoposide via an IV for about 30 minutes.  You also start taking Fluconazole and Valaciclovir, two drugs that stop you from getting various infections and viruses, and regular antibiotics called Resprim Forte – every Monday and Thursday.

The following Monday/day 8, you have Bleomycin and Vincristine. These are the ‘nasty’ drugs. A lot of people skip Bleomycin because it can be rather hard on the lungs. In fact I only ever had it for round 3 or 4 and sure enough I got a lung infection. There is some talk of taking Bleomycin out of BEACOPP altogether.

The trail-blazing Hodgkins Study Group in Germany came up with the predecessor regime MOPP in the 60’s and found they were saving up to 70% of patients with advanced disease. ABVD and BEACOPP are ‘tweaks’ of MOPP and are the most commonly used treatments for HL.  Basically HL treatments are so successful now, with 90-95% of all patients surviving beyond the all-important 5 year mark, that improving treatment means asking what they can take out and how they can lower the impact of the treatments, rather than how can they make more of an impact.

Dripping water in IV machine.

It’s not just the drugs targeting the disease, these regimes also include anti-nausea drugs, blood transfusions, drugs to stop side-effects you couldn’t dream up (such as “tumour lysis syndrome” which is what happens when you kill off a heap of cancer cells really quickly and they’re released into the bloodstream) and so on. I would add, time taken up attending the appointments for the actual chemo is a small fraction of all the time spent on the other things you get involved in.  A large portion of the chemo pie chart is obviously time spent in waiting rooms due to the always-parlous state of public health funding, even in these relatively enlightened times.

It’s not a surprise that chemo wears you down, and that people often talk about the irony of fighting disease with treatments that could and should (and sometimes do) kill you. So some of the associated treatments have the sole purpose of cancelling out the threat created by chemo to your body. There is, for example, G-CSF therapy, whereby on about day 8 you inject yourself with a drug called filgrastim. This stimulates your bone marrow, where blood cells are produced, to resurrect after being punch-drunk from all the chemo and to produce white blood cells, which are pushed out into the blood stream. You can actually feel it happen because your larger bones, such as the hip, thigh and upper arms, often feel achey at this time as the cells leave the bone marrow.  Bone marrow in its stunned-mullet state can take ages to get back online unassisted, especially after a few rounds of chemo. This would leave your body exposed to infection for too long a period to be safe, so by using G-CSF therapy,  chemotherapy can continue uninterrupted. 

This amazing therapy was developed off the back of discoveries and research made at the Walter and Eliza Hall Institute in Melbourne in the late 70s – early 80s, and it’s since been used in the treatment of more than 20 million cancer patients world-wide.  It’s one of the discoveries that has made chemo more effective and less traumatic, and no doubt saved millions of lives so it probably deserves far more than the 40-odd words I’ve given it here. But along with the human body, it’s not perfect. So my very battle-weary immune system, still waiting for my exhausted bone marrow to lurch back into action after 3 hits of filgrastim, would succumb to an infection, my temperature would spike and into the emergency department I would go. In fact, despite my relative youth and health, chemo rounds 4 and 5 were both delayed by a week because I just couldn’t get my white blood cell counts up high enough in time. 

Another thing I had not expected was that I would be fitted with a PICC line. I had no idea they existed before my but a PICC line is a thin, soft, long tube inserted into a vein in your arm and the end of the tube sits in a vein that takes blood to the heart. It’s a really effective way of getting medicines into a patient without damaging veins and for getting blood out for tests.  It’s very useful because it gives the nurses access to your veins (“access to your veins” is shortened to “access” in hospital jargon) quickly and cleanly. It’s also a pest because you have to keep your dressing clean and dry, and you have these tubes dangling off your arm with large “lumens” (protective covers for the tube ends) flicking around. When they are not in use you need to keep them taped up and tidy.  A stretchy bandage covers the whole area.  This is all fine and great except that I live in the world.  I now had a wardrobe problem – I needed clothes with comfortable, long, loose sleeves to cover the bandage area, especially when the weather warmed up.  Luckily I managed to find a solution involving the hours in the waiting room, my love of hand-sewing, and a large stockpile of fabrics.

#chemochic birthday!

#chemochic at the beach, with bonus baby.

So there’s all that to chemo and then there’s the time commitment I’ve mentioned. And the little medical details, the equipment, the jargon. Of course chemo is really about the hard line stuff, the huge discoveries, the amazing reality that diseases that were a guaranteed death sentence only a few decades ago can now be contained or are even on the way to being cured. When you’re in it, chemo can feel like a really involved programme of sitting in horrible vinyl armchairs in waiting rooms, drinking more tea out of Styrofoam cups than is good for you, the environment and your dignity, while becoming addicted to Survivor reruns against your will. I watched countless needles go into my PICC line. I watched the nurses, hypnotised, as they hooked up different drugs, blood transfusions or even just bags of saline, which are used to flush the line clear.  I admired their rapid button pressing ability, the assured way they had of looping up and clamping tubes that drugs would flow through, the little trick they had of flicking air bubbles out of the tube.  The particular way that each nurse would lay out her workstation with opened vials of saline for flushes and various sets of latex gloves and little bottles of different solutions open and ready. The way you knew particular nurses were new because they didn’t do this and then a simple dressing change on your PICC line would take three times as long as usual. The quiet chit-chat, the hum of your neighbour’s tv. The slightly embarrassed, self-conscious presence of the accordion player who would take up residence in the day centre on Mondays. The lovely tea lady bringing around fresh cake, tea, coffee, and fresh fruit for patients only (returning Hunter’s hopeful smile with a blank look, crushing his hopes for a slice of the cake of the day).  

A quiet, almost cruisy life flicking between BEACOPP chemo appointments, coffee dates and playing with the kids. That’s how I spent the second half of 2015. The chemo wrapped up late November and my PICC line was removed a few days later. I didn’t anticipate more chemo after these 6 rounds. I had been told by medical specialists that the likely outcome for 2016 would be that I would certainly have to have radiation therapy and, quite likely, a stem cell transplant. BEACOPP chemo finished up in late November after a couple of delays and hiccups. My bone marrow was exhausted.  My hair did not burst back into life like a pot of aggressive alfalfa sprouts.  

Koen explaining how Santa was going to get in.

Beach life, bonus sleeping baby.

Koen teaching Saskia. Not killing each other! Wonderful times.

At Christmas time, life was pretty lovely.  I had worked quite hard in September-November and produced a round of papercut Christmas wreaths, which I sold to friends and family. The response was surprisingly huge (well, relatively so – cutting and mounting them by hand of course slowed everything down) and it was so great to have a bit of cash to go crazy on the kids.  Hunter and I struggled to buy each other a present though. We often buy each other ‘significant’ gifts and couldn’t think of one that encompassed all that we’d been through in the past 6 months, so settled on a Country Road doona cover and pillow cases instead. We welcomed the new year 2016 at the beach house quietly, hoping that my CT scan on 4 January would show results which would promise a course of radiation and some recuperating before a return to something like a normal life. But sure enough, the cantaloupe had other plans.

Christmas Wreath, 2015