Sunday, July 03, 2016

Out the other side

“So, does that mean we’re in remission?” asked my wife hopefully.

“Well,” said my haematologist, leaning back in his chair thoughtfully, “yes, I guess so.”

Exhale. And so it was that I found out I had beaten cancer, with a whimper rather than a bang.

It was a suitable bookend to my experience in October, when I found out my body was afflicted with this wretched disease with a rather underwhelming encounter with a distracted doctor.

It had been about six months since I’d felt the effects of the lymphoma, and three months since the last of the chemotherapy washed through my body. I knew there was a fair chance I was in the clear, but it’s very comforting when that observation is made by a medical professional with a PET scan of my body at his fingertips.

As the doctor explained, it doesn’t mean that the mass in my upper chest has disappeared entirely, but that the tumour that does remain is small and innocuous. Those cells may never disappear from my body entirely. A further PET scan later this year was recommended to check whether the tumour was continuing to shrink.

The daily grind of the chemotherapy treatment already feels like a distant memory. When I was in the midst of it I had an intimate knowledge of each of the drugs in my cocktail, living my life by a drug treatment cycle and feeling the aches and fatigue of each of their side effects. Now that it is not a part of my life that information has slipped from my mind, the specifics of each step a distant memory.

Part of the reason why is practical; if I don’t need that information to influence my actions, why bother retaining it? But part of it is also a coping mechanism. Forgetting the detail allows me to better close that slightly terrifying chapter of my story. Were those details to remain in my mind I fear I would become what I wanted to avoid – a person who defines himself by his disease.

I know I’m one of the lucky ones. For now at least, my treatment has been limited to the poisonous elixir of chemotherapy. Others in my position have endured my course of treatment only to be told that danger still lurks within them and they need to undergo radiotherapy. Even as their body reeled from the chemical assault they would need to ready themselves for more. The physical challenge would be tough, but the angst that went with it would be a test of endurance.

Of course there’s some chance I’ll be back for more treatment down the track. Being in remission means that the immediate threat has passed but there’s a real prospect that the cancer starts to grow again and I’ll need to take action. For the next five years, and in reality for the rest of my life, I will need to be vigilant for the symptoms of the dragon within me again breathing fire, like night sweats or fluctuations in weight.

There’s also the sad irony that the battery of diagnostic tests I’ve had along the way – PET scans, CT scans and x-rays – each carry their own risk of bringing on, you guessed it, cancer. So I could conceivably get a cancer resulting from the tests I needed to track my previous cancer.

Being a cancer survivor also carries its own psychological burden. As my former colleague and fellow cancer survivor Michael Coulter has written, life can be tough even once you’re out the other side:

In the end, I was among the lucky. The chemo did its job, the side effects receded, and a year later I am much as I was, barring an aversion to ice-cream and a certain nervousness about unexplained aches and pains.

It’s taken all of those 12 months, though, to reach a point where having had cancer isn’t the first thing I think about when I wake up. Because the disease’s final surprise is that even when it's gone, it isn’t. Cancer owns your life for weeks, months or years, and when you get it back it won't be in the same shape you left it.

For many people that’s because they have lasting physical or mental damage, caused either by the disease itself or the treatment. For others, it’s the difficulty of readjusting to a life that isn’t focused around the simple facts of treatment. When your attention has been so exclusively on the here and now, the future can take you by surprise. One survivor described the feeling as cancer having paused their life. “I'm still waiting,” she said, “for someone to press play.”

Ghoulish as it may seem cancer treatment instills routine and a sense of purpose. My visits several times a week to the cancer clinic were important appointments to be kept, sparing me the self-pity that can come with days at a stretch in bed.

Those visits also gave me a personal connection to many of the medical staff. I wouldn’t be naïve enough to call them friends – they were doing a job, and doing it damn well – but the staff were great allies and a support network. Just as they got to know my story, I got to know theirs. I found out about their background, their children, their world view and the daily dramas of their lives. To absent myself from that was akin to suddenly departing a particularly sociable workplace.

Were I to return to my pre-cancer routines, of office work during the day, evenings relaxing on the couch and bike rides on the weekend, I suspect I would be at risk of daily life feeling inconsequential given the existential threat I recently felt. It would be hard to feel some emotional engagement with those activities when the suspicion that none of it really matters would have lurked in my mind.

But my circumstances are a bit different. In the two months before I was given the all-clear my first daughter was born. Having the end of my time as a cancer patient overlap with the start of my time as a father means I have been spared any sense of returning to my previous rhythm. The sense of great meaning I attached to my days during treatment has merely continued in another form, merely shifting from a mood of sorrow to one of bliss.

Eventually both the cancer and the early months of fatherhood will recede into the distance and I will perhaps be susceptible to the difficulties of returning to life as normal. For now, though, I’m in the throes of another big life event and am happy to stave off that mortal enemy, mundanity.

Every time I am back in the cancer clinic I am sure to drop in to visit the cancer nurses who are now devoted to saving other people in the position I was in until recently. A few weeks back my wife and I took my daughter in so we could introduce her to the staff. Over the six months of my treatment they had regularly seen my wife as the pregnancy advanced, but just a few weeks before the baby arrived my need to visit the cancer clinic ended.

As we wandered around the clinic with the baby in a pram we were greeted with great enthusiasm. In a hospital ward where the foreboding sense of death lingers heavy in the air, we were instead bringing in new life.

The baby they held and cooed and pinched was perhaps the best manifestation of just why we all battle on when nature tests us.

Thursday, May 26, 2016

Much in a name

Naming a child is one of the greatest responsibilities a parent has. Short of some dramatic action by its bearer, a person is stuck with a name for life and all the nominative determinist consequences that flow from it. While opening it up to the whims of the democratic process was one option (Baby McBabyface?) and engaging the services of a baby name consultant was another, Melanie and I opted to take on the responsibility ourselves.

Our criteria? We wanted a name that suited a child as well as the adult she will become. We wanted a name that conveyed both warmth and gravitas. We wanted a name that carried some broader meaning, within our family and beyond it. We wanted a name that was easy to say and easy to spell. And we wanted a name that sounded good, in its entirety and when each part stood on its own.

For us, it wasn’t just the given names that needed to be chosen. With Melanie and I each keeping our family names when we got married, our daughter’s family name also needed to be decided.

In the end we named our daughter Amelia Sara Calvert. For those curious, there’s a story behind each part.

Amelia has a long history as a girl’s name across several European cultures. In Latin it means “industrious”, a quality we would be proud to have in a daughter. The name has recently come back into vogue across the English-speaking world, though unlike the emerging popularity of other names, there is no clear celebrity trigger for this one.

Instead the most famous Amelia is the great aviatrix (what a word!) Amelia Earhart, a swashbuckling American adventurer who in 1928 was the first women to fly across the Atlantic Ocean. Earhart’s story resonates with our family – she was independent-minded, loved to fly and was a talented writer.

A few quotes from Earhart tell you much about her approach to life:

"The stars seemed near enough to touch and never before have I seen so many. I always believed the lure of flying is the lure of beauty, but I was sure of it that night."

"The most difficult thing is the decision to act. The rest is merely tenacity. The fears are paper tigers. You can do anything you decide to do. You can act to change and control your life and the procedure. The process is its own reward."

"One of my favorite phobias is that girls, especially those whose tastes aren't routine, often don't get a fair break... It has come down through the generations, an inheritance of age-old customs, which produced the corollary that women are bred to timidity."

"Never interrupt someone doing something you said couldn't be done."

Sara, our daughter’s middle name, was given in honour of her great grandmother, who died in 2013 after a long and interesting life that started in Bialystok, Poland, and ended in Melbourne. Middle names have become an apt way to honour deceased relatives on my side of the family and we were keen to continue the tradition. 

My grandmother would have been very excited to have met her great granddaughter and would have no doubt imparted great advice, much of it wise but all of it entertaining. The family tree for whom Amelia is the newest twig shows a Chaya Sara Fink born in Krynki, Poland, in about 1815, so our daughter is bearing a middle name that has been around for seven generations in our family.

Calvert, our daughter’s family name, is Melanie’s family name. While we have defied one convention in this naming decision, we hope to create a new one.

Melanie and I have a very equal relationship. From finances to housework to decision-making, the two of us each enjoy equal benefits, and bear equal responsibility. So when we got married in 2014, it seemed natural to us that we would retain our existing family names rather than have one of us relinquish our name. (It was, perhaps, a reflection of the fact we were both in our 30s and had established independent lives, with our own names, when we got married.)

For us, the tradition of a woman taking on her husband’s name (and the inverse) had a faint hint of possessiveness that we could not countenance. It also put a partner in an awkward position if the relationship were to dissolve and they were left with a family name for a family of which they are no longer a part. While our relationship was strong then and remains so, you never know what the future will bring.

So what name to give to children? One option is a hybrid name that combines parts or all of the parents’ names into a new name, whether as a portmanteau or a double-barrelled name. But this relies on the good fortune of names that work well together, with was not the case in our situation (Shalvert? Carp?). It can also be difficult to perpetuate across future generations without names becoming long and unwieldy.

We needed another approach. We had long been fond of the idea of children taking on the family name of their same-gendered parent, so a daughter takes on the family name of her mother and a son takes on the family name of his father. This approach is a more equal one, giving both parents a chance to pass on their name and not privileging one parent over the other as the head of the household.

Once we found out we were having a girl, it was an easy decision to follow through on the approach we had agreed to. As the parent whose name would not be borne by his child, I was totally relaxed about the decision. The pride I will take in my daughter in the years ahead will come from her personality and her accomplishments, not specifically from her family name.

In Amelia’s case, we had extra reason to give her Melanie’s family name. I am one of five children (including three boys) so there is a strong chance that my family name will be passed on through at least one of us. But the future of the Calvert name in Melanie’s family is less assured. Melanie has one sister, whose wonderful daughter has her father’s family name. Melanie also has two female cousins with her family name. Under the conventional approach to naming, the Calvert name in this part of the family would end at this generation. I am pleased that, with the arrival of Amelia, there will be at least one further generation of Calverts.

So that’s how we came to name our daughter the way we did. Of course, now that the name is hers she is free to do with it what she wishes – to keep it, to modify it or to replace it with something entirely different. For now, though, we think Amelia Sara Calvert sounds just great.

Amelia Sara Calvert

Thursday, May 19, 2016

The joys of new life

As I sit writing this post my soundscape is filled with the contented murmurings of my daughter as she sleeps in the bassinet beside my bed. During a point in each sleep cycle she becomes quite animated, her breathing quick and irregular, her little palms flailing in front of her face and her lips letting out wordless utterances of agony or ecstasy. Such is the way with the dreams of a newborn child, where the realness of the experience manifests itself in the physiology of the dreamer.

Just what a newborn dreams about is hard to imagine - perhaps a pleasant dream about the cosiness of the womb or a nightmare about her sudden exit from it.

My daughter Amelia entered the world just two weeks ago. Every moment since then has been one of bliss for my wife Melanie and I, even the moments when Amelia's contented murmurings metamorphosise into pained screams from deep in her lungs.

As parents of a newborn we can quite happily while away the hours with Amelia, cuddling up and talking to her when she is awake and watching and listening to her as she sleeps. At first the appreciation centres on her physical cuteness - the dainty feet, the elaborately formed ear, the smooth crevices of her neck. All are a sensory delight that look so delicate, smell so fresh and are so soft that your fingertips barely detect that they've made contact.

But then the appreciation moves to the things she does. If she's in the right mood she can beguile us by making eye contact and staring deep into our souls - or so it seems. She can signal her desire for a feed not just with a throaty cry but with pleading eyes and an outstretched tongue. She can perform multiple bodily functions in perfect synchronicity and seemingly minimal effort. She can appear completely unconcerned as her whole body shudders in the throes of hiccoughs. Perhaps most satisfying for me is to watch her grapple with mild distress by taking in her surroundings and adjusting herself to achieve physical and psychological comfort on her own, rather than pushing the infant panic button.

Yes, I know, all these things have been going on with newborns since the dawn of time and are of no great interest to people other than a child's parents. The seen-it-all-a-thousand-times-before malaise of some of the midwives we've encountered is hard to miss. But we are her parents and so can't help but be captivated and intrigued by them.

Perhaps a small part of my fascination with the minutiae of my daughter's existence comes from the small but real possibility that I wasn't around to enjoy it. Before she'd reached the end of her first trimester in the womb I was diagnosed with my lymphoma and told I would need to undertake a battering of chemotherapy to maximise my chances of survival. The tumour in my chest was putting pressure on a heart valve, and my doctor later told me that it would have killed me within a week if we didn't start treatment when we did.

During the long months when my energy was sapped by the cell-killing drugs of my R-EPOCH cocktail I yearned for the day when it was all over. Sure, there was the relief from the physical symptoms, but most importantly, I wanted to know that I was one of the lucky ones who could tell stories of survival rather than a poor soul unable to escape cancer's deathly grip.

In the depths of my treatment I dreamed of the life I would have if only I could be among the survivors. Top of the list of things I desperately wanted to do was the cradle my newborn daughter in my arms and tell her everything is okay, knowing it was the truth.

It is a cliché of confronting hardship, medical or otherwise, that your children give you a reason to battle on. In truth I was pretty determined to battle on regardless. But the looming arrival of my daughter meant that my survival was not just something I desired so that I could continue to enjoy my life, but was now an obligation I had to another person in order to ensure she had her father in her life. To have succumbed to the disease would have denied my daughter something very precious.

Of course there is still the very real prospect that my health troubles will return and I will once again have to confront the prospect of denying my daughter an active father in her life. For now, though, things are looking pretty rosy and I can marvel at the wondrous things my daughter does, even if every other person in the history of humanity has done something similar.

Such simple pleasures, I am rapidly discovering, are the hallmarks of parenthood.


Monday, April 18, 2016

Life as a cancer spouse (or chemo groupie)


Since my diagnosis last year I've shared my reflections on this blog. Now it's time for Melanie, the woman who has been by my side throughout, to have her say.

October 2015 was a memorable month in our household. We were in the early stages of a much-anticipated pregnancy and digesting the news of a possible job offer overseas. And Ari was rapidly becoming unwell with what turned out to be a primary mediastinal B-cell lymphoma. Fast forward six months and with treatment over it seems like the right time to look back on the experience of being a cancer spouse. 

1. Listen when other people say it's more important to be at the hospital than in the office. There are always going to be other people who can write articulate and persuasive documents (although usually not the people who assert that this is their skill set), but not many people can hug your husband before surgery. I deeply appreciated having a boss who supported me using my accumulated carer's leave and helped make the case for a work iPad. Responding to work emails can be as good a way as any to pass the hours waiting for news in hospital wards ... and no one will notice if you roll your eyes at the more ridiculous requests. 

2. Sometimes the best thing someone else can do to is take the initiative. Many people asked how they could help over the past six months and sometimes we were able to come up with a good answer (thanks Jude and Pete for mowing the lawn, and Ruth and Will for loaning me your shower when Ari was too cytotoxic for us to share a bathroom, and Brie and Ella for taking over managing the netball team). But often it was hard to think of something specific - and at those times it was great when friends and family made their own call. The food hampers, frozen homemade dinners and gift vouchers for food delivery services were much appreciated. It was good to have visitors in hospital when Ari felt up to it. As a habitual organiser of social get-togethers, I was particularly grateful for friends suggesting and organising gatherings where I only had to remember to rock up. And our parents were thoughtful in finding ways to help - constructing a baby's room, playing the role of medical warrior to find all the info we could on treatment, managing logistics and doing laundry - which is possibly more than Ari and I deserved when we had both been stubbornly resistant to well-meaning parental assistance for decades. Asking for help graciously is a difficult skill, but one I will continue to practice after we have a new baby in the house! 

3. Any cancer story is part of a larger cancer narrative. Lots of people's lives have been touched by cancer. And many friends and family were generous in sharing their own stories, mostly of battles fought and won. It was always encouraging to hear about those who made it through - especially those (Kylie and Anita, Skip and Alice, and Adelle) who had experience with lymphoma and had wise advice to share. As Ari has written about previously, the protagonists in a story can set the tone, and we were keen to be optimistic. But acting as though beating cancer is just about having the right attitude is not fair to those who have fought the battle and lost. I miss my lovely friend Liv who passed away in 2014 after two years of giving it her all. Sometimes the science just isn't enough. Hearing a lot of stories confirmed the feeling that Ari, while unlucky to have cancer, was lucky to have a cancer that was very responsive to chemotherapy, lucky to live just down the road from the brand new Canberra Region Cancer Centre, and lucky to have a bub on the way. 

4. Hang out with friends who have news of their own. Some coffee catch-ups are inevitably going to be a bit one-sided with updates on doctors' appointments, blood tests and scan results. But it is tiring to focus on your own crises all the time, and therefore refreshing to hear about the ups and downs in other people's lives, including the lighthearted stories. I encourage friends to say "I hear your medical update and I raise you one unbelievable tale of going-out-on-Thursday-night-meeting-a-lovely-boy-and-then-having-to-sit-next-to-him-in-an-interdepartmental-committee-meeting-the-next-day". 

5. It's okay to cry. I'm not a big crier generally (apart from sad movies ... and scary movies, and I extend my apologies again to the guy who thought that The Sixth Sense was a good date movie back in 1999). But a good cry in the car driving home from the hospital can cleanse the spirit so that the next task can be tackled. And despite Aussie office culture being largely antithetical to overt displays of emotion, unless the subject is football, I found my colleagues were remarkably robust with the occasional teary episode. There is also unexpected humour to be found in dealing with hospitals, doctors, other patients and well-wishers and it's good to share these experiences too so it's not all delicate and gloomy. 

6. Napping on the couch is strongly encouraged. I'm not sure why it's more comfy to fall asleep on the couch than to walk all the way to the bedroom and get into bed (I should note that we live in a one-bedroom house, so the walk "all the way" to the bedroom is about 1.5 metres). Perhaps pregnancy was an added soporific in my case. Getting enough sleep, whatever way you can, makes everything else a bit more doable. 

7. Tempt the parking deities. I'm not sure what transport-related goddesses I must have prayed to in a previous life (Adeona, the Roman goddess of journeys, or Hecate, the Greek goddess of the crossroads perhaps) but I incurred no parking fines in six months of leaving the car in one-hour spots at the hospital for what turned out to be five-hour visits. I abided by the rules as much as possible. But I also decided that it was not a priority to have the right change or download the right app (I'm looking at you ANU), and that fines would be paid if they came. And having had my six months of grace I'm now back to conscientious parking payments. 

8. Having cancer is an individual event, but battling it can be a team sport. No matter how crappy it is to watch someone you love have toxins pumped into them or wait for days for test results, it is crappier to be that person. It is important to take cues from the star player in the game - something I didn't always get right. I know I offered irritatingly sunny optimism in times of frustration and unnecessary assistance with basic tasks, which reinforced the feeling of being an invalid. But being "here if you need", as they say in netball, is really important. While Ari and I didn't mention the traditional "in sickness and in health" in our marriage vows, recent research shows that being married helps cancer patients survive longer. So I like to think I have done my bit to ensure Ari is around for a long time to come, adding amusing updates to this blog.


Courtesy of Out in Canberra