‘I want my daughter to remember the good times after I’m gone’

Sydney-born Marisa Calo doesn’t like referring to herself as a “terminal” patient — despite having stage four cancer. “It depends on your definition of ‘terminal’,” she muses. “When you have stage four cancer, they say it’s incurable — in the sense that you can never get rid of it. So, while I don’t have any visible cancer spots at the moment, statistically, it’s bound to come back somewhere at some point.” Till such time, the young mum is on a trip to create some of the best memories she can — especially where four-year-old daughter Avia is concerned — through a scrapbook that’s documenting their time together — plus everything she’d like her little girl to know, when she’s not around anymore.
 
Back to the beginning
The homemaker was just 27 when she noticed the lump on her left breast in 2013. Avia was 18 months old at the time and Marisa thought that perhaps the lump was because she’d stopped breastfeeding a couple of months earlier. But it didn’t go away, so she showed it to her doc. “I could tell something was wrong,” she recalls.  

A biopsy and two days later, she was diagnosed with invasive ductal carcinoma (IDC) — a very common type of breast cancer — but one that went from stage two to stage four for her, over the course of a year. The double blow, however, was finding out that she was pregnant again, just a week after the initial diagnosis. Together with her husband, Steve, Marisa had to make the heartbreaking decision to terminate the pregnancy so she could start the chemotherapy. That was three years ago. Since then, she’s had a single mastectomy, six rounds of chemo, five weeks of radiation and continuous medication — a combination that has led to a clean bill of health. For now.

Interestingly, getting that first cancer report wasn’t as ‘earth-shattering’ for her as it might’ve been for most folks. “Unfortunately, we were used to bad news,” explains Marisa, whose husband was diagnosed with a brain tumour in 2008, a year after they were married. It wasn’t cancerous, thankfully; however, the surgery to remove it left him with occasional episodes of seizures. It didn’t help matters when Steve’s mother was diagnosed with cancer in 2009 — and passed away just 12 weeks later.  
“Cancer is a scary thing for most people,” agrees Marisa. “But because of everything we’d been through, I had some perspective [when I got my own report]. When I was diagnosed, the cancer was still quite small, we knew where it was, and we knew what could be done. In the grand scheme of things, that didn’t seem too bad.”

It helped that they were moving house at the time and were kept quite busy with taking care of their daughter as well as the logistics of moving. As Marisa puts it, they “didn’t have time to stop and worry — plus, Avia’s been a very good distraction from everything”.

Finding out that it had progressed to stage four was a lot harder for them to handle, she says. “Especially the fact that I wouldn’t be able to have any more children, since I’d always have to be on some form of treatment or the other… That’s been really upsetting, because Avia’s constantly asking us why everyone else has a brother or sister and she doesn’t. Just the other day, she commented on how the ‘naughty doctor’s giving mommy medicine that doesn’t let me have a baby’.”

It’s hard, says Marisa, but it’s become part of everyday life for her now, and she deals with it by not giving her condition more attention than it needs. “I go to the hospital every three weeks, and have scans every three months, but I treat them like any other appointment. I prefer not to make them a big deal.”
 

The scrapbook that Marisa created for her daughter, titled 'Letters for Avia'

Making memories
The scrapbook was the brainchild of her oncologist Dr Gavin Marx. “I’d mentioned to him that I’d started doing a writing course that the hospital provided, and that’s when he told me about the digital scrapbook he was working on called ‘It’s About Us’.” Designed to give cancer patients a means to create and personalise keepsakes for their loved ones, Marisa was one of the first patients who got to use the platform to create a book, which she’s titled ‘Letters for Avia’.  

“When I was first diagnosed, I wanted to write a book for my daughter — not a novel or a biography… just little letters and short pages of memories and experiences that I’ve been through. Writing this little book helps me do that. I talk about my cancer — the diagnosis, treatment, and changes I went through, such as when my hair started to fall out — Avia likes that one,” notes Marisa, with some amusement. “She thinks it’s funny, so we read that together sometimes. The rest consists of my childhood memories, travelling in my 20s, meeting my husband, going into labour with my daughter…” Steve too has written a page with his thoughts, which Marisa says was “really nice to read from his perspective”.

The book’s permanent spot is on a shelf in Avia’s bedroom now. “She calls it her book,” laughs Marisa. “And she knows I’ve written it for her. She actually told me the other day that she’s going to write a book for her kids when she gets older too... Some days, she’ll pick it up and ask me to read it to her. Of course, right now, I pick out the [age-appropriate] portions I can read to her… She likes certain parts of the story, plus there are lots of photos so, sometimes, she likes just looking at those… I took it out recently to put in a picture and she asked me to make sure I bring it back because it’s her book!”

Was it difficult to write it all? “The last page definitely was,” Marisa admits. “It’s basically a letter to Avia for when I’m not around anymore. That was hard to do — but I’m glad that I got it down on paper. One of the things I have yet to write about is the baby we didn’t get to have. I’ve thought about it a lot, and I will include it, but it’s been difficult to write down so far.”

The entire process has been “very cathartic” but, more than anything else, Marisa says she wrote the book because she wanted to be there for her daughter, even after she was gone. “I wanted Avia to have a book with everything that I planned to tell her throughout her life — you know, when she’s older and going through different phases — but might not be around to do, in person. I want her to have it, so that if she ever feels like she’s missing out because I’m not around, she’ll know that I love her and that’s why I took the time to do this… that I am doing and have done everything I can to make sure she knows that and to be there for her as long as possible.”
 

With husband Steve and daughter Avia

The little things…
How much does Avia know right now? “She understands a lot but I don’t think she knows I have cancer,” says Marisa. “She might have heard me say as much to people. I mean, I haven’t had reconstruction, so it’s a bit obvious. We answer her questions, but don’t tell her more than she needs to know. In her mind, right now, she understands it as: some moms go to work, some stay at home and some go to the hospital at times.”

In a way, Marisa says, her experience with cancer has made her appreciate the time she has with her loved ones even more than if she’d never had it at all. “Life is about making memories with the people you love,” she says. “I knew that in theory before I was diagnosed — but it’s been a strong reminder not to get too caught up in the little things.  

“I don’t want her to remember that the house was perfect, or that I was complaining about the mess she made,” she continues. “I want her to remember us.” Marisa is more positive now than she was six months ago “about how much longer I’ll be around”, but she’s trying to be really conscious of the kind of memories she’s leaving Avia with. “She’s only four, and there’s not too much you remember from that age — but I’m always trying to be aware of anything I might do that wouldn’t make a great memory for her as time goes by.”

One of the biggest lessons she’s learnt over the last three years is to dial down the complaints. “There’s no point wasting time by complaining — especially about things that can be fixed,” she says. “If you’re unhappy about stuff, do something about it... And look after yourself. Being a mum, it’s easy to get so caught up in looking after the kids or family that you forget about yourself. If you don’t feel right, get yourself checked... I almost didn’t go — but I’m very lucky I did. It doesn’t matter if there’s nothing wrong. Making sure you’re healthy is never a waste of time.”

karen@khaleejtimes.com