Alice's Story - 2019 Dry July Ambassador

Alice's Story - 2019 Dry July Ambassador

In 2018, 36-year-old Alice was diagnosed with breast cancer while living in Indonesia. This year Alice is sharing her story to support Dry July - raising funds for Barwon Health's Andrew Love Cancer Centre.

Alice's Story

It’s been a year I never expected I’d ever have to experience. Especially now. You never think it will happen to you. This cancer business. It happens to other people, someone else.

But in mid July last year, I was diagnosed with triple negative breast cancer. I’d been living in Indonesia the last 2.5 years, and had found the lump two days before my wedding day a month earlier in June.

I was at my fiancé’s house in East Kalimantan trying on my traditional wedding outfit. As I was zipping up, my fingers hit an unusual object in my right breast. “That wasn’t there before” I thought to myself. My fiancé checked it. My mother-in-law too. Yup, there was definitely a lump. I was so preoccupied with the upcoming wedding ceremony preparations, I wasn’t too worried. I’d worry about it later. My mother-in-law tried to make light of it, that it was probably just a cyst, and I should have a massage. She called in the local “ibu”; a masseuse, who gave me a great massage, but I didn’t appreciate her pressing into my breast trying to magically rub the lump away.

The day after our wedding, my husband and I took an evening trip to a local hospital so a general practitioner could check me out. The doctor did a general palpation inspection of the breast, and confidently informed me that there was indeed a lump, but it was benign. You can tell, because it felt smooth, hard and it moved around; as in, it wasn’t attached to anything. She explained that I shouldn’t worry too much; that this happens often.

I followed up with an appointment to see an oncologist, the evening I returned to Yogyakarta; the city in which I was working at the time.

This oncologist, similarly to the GP, made an inspection by palpation; a feel of the breast. He grasped the lump and told me it was about 2cm big; but not to worry, it was indeed benign because it was smooth, hard and mobile. I enquired as to whether I should get some further tests; a biopsy or ultrasound. But I was very confidently informed that I shouldn’t worry about it; and that I was smart to have found the lump and come in for a checkup; many women in Indonesia come when it is already too late.

After a chat with my international medical insurance, we agreed I should seek a more thorough diagnosis; and to do that in Singapore. In mid July, my husband and I flew to Singapore with an appointment to see a breast cancer surgeon.

In the 3-4 weeks we had waited to depart, we were delighted to find that we were pregnant. With the excuse of attending appointments and possibly removing the benign lump, I was excited to go to Singapore for a mini holiday with my husband. We had been living on different islands for the better part of a year at that stage for work commitments, and it was nice to get away from it all and spend some time together. And I admit that I felt falsely convinced and confident and unworried that this lump was not anything to be worried about. Alice2

This lack of concern made it pretty hard to digest the news the Singapore doctor related to us in a follow up consultation after going in for a biopsy a few days prior. “I’m sorry”, he said, “but unfortunately I don’t have good news. You have cancer.”

I remember going very numb; like my brain had shut down. I was trying to stay composed and take in all the detail the doctor was relating to me. Stuff about getting my permission for pathology to do further tests to identify what type of cancer. And if it was this kind of cancer, I would need to have this kind of treatment. If it was that kind of cancer, I’d be looking at that kind of treatment plus some other stuff afterward. The whole time I was so conscious of my very new husband sitting next me. His English is good, but I knew the pace and language the doctor was speaking at would have eluded his ability to grasp all the content. The more devastating part of it all was the doctor strongly advising terminating our pregnancy. He was a “no risk” guy. “When we will be focused on caring for this pregnancy, we will be putting you in higher risk” he said. “And what is important here, is preservation of your life. And best not to put that at further risk.”

We stepped out into the waiting room. My husband asked me to explain the details. I somehow managed to tell him I couldn’t talk now from my quavering lips I was trying so hard to contain from bursting into tears and becoming an inconsolable sobbing mess. And I was fighting them back really hard. We left the hospital and got a taxi back to our apartment. I was silent the whole time. My husband Danu was too. Once we were inside, I fussed around a bit first before falling onto the couch in tears. And through sobs and crying, I explained all that I could remember from the doctor’s visit to Danu. I was completely devastated. Heartbroken. I’d just married the love of my life and roped him into this mess. We were pregnant and were told we shouldn’t keep him. And treatment, depending on the type of cancer, could seriously jeopardize my fertility. I’d screwed everything up. For the people and me I love. And through all of this, I was also severely nauseous from the first trimester of my pregnancy. Nothing like feeling crappy on top of very crappy news. Foto1

I returned to Australia early August. We had decided it was best I go home for treatment. Danu had to stay in Kalimantan for work. And having no concept of what duration treatment would take, we decided I’d go on my own and get things started before working out longer-term plans.

The day after landing back into Australia, I embarked on what has now been nine months of treatment; cared for, treated by, cried to, and laughed with a formidable medical team at Barwon Health’s Andrew Love Cancer Centre.

My treatment started with some further tests by my surgeon and oncologist, confirming the diagnosis of my Singapore visit that I had a form of cancer called triple negative. It also confirmed that the gestation of my pregnancy was advanced enough to be deemed safe for general anesthetic surgery, and following that, the fetus developed sufficiently post first trimester to endure chemotherapy. I remember my oncologist saying with a smile on her face, “We can do this!”. As so we were doing this with the pregnancy!

As so, as a project manager in the field of disaster management, I treated this as my own project. Broken into phases and milestones. And using an agile approach, modifying the project plan when circumstances change. Surgery was the first milestone. Let the project begin! In late August and early September I completed two surgeries. The first was the initial lumpectomy; simply, to remove the cancerous lump in my breast. Unfortunately, during surgery, my surgeon found that the lump was much larger than tests had suggested, from around 2cm to 6.7 x 4.2cm. And histopathology results of that removed lump, which included margins around it, also found more cancer in the margins. Hence, in for a second surgery we went to remove some further margins. To be safe. However, even more cancer was found in this second excision. As I was already 15 weeks pregnant by this stage, reasoning was that I commence my 6-month course of chemotherapy. This also allowed me to decide on how to proceed with further surgery post-chemo.

In my weeks of recovery post surgery, I met my most wonderful oncologist, to discuss and set the plan for chemo treatment. One of my most confronting days; discussing chemo, side effects, hair loss…. I cried all the way up the street with my scarf held over my face, back up to the car with mum heartbroken and silent beside me.

The first 3-month course of chemotherapy was made up of 4 sessions of treatment every 3 weeks. This was the first time I had met the chemo nurses. A rock out team of professionals who made the 4-5 hour sessions pass by pleasantly listening to their rotating streamed music podcasts. That and the company of my mum, visits from my Aunty, and our sessional indulgences in a coffee and jam donut. Out of sessions and before the next, was usually spent exceptionally fatigued and nauseous, lying on beds and couches sleeping, trying to sleep or watching Netflix. Having never done neither, I was always in a constant state of confusion on what was chemo related and what was a symptom of pregnancy. I lost my hair in the third week of the first chemo session. Well, more so, it started suddenly falling out drastically, and ended up a matted dreadlock mess one morning with a big ugly bald patch in the centre of my hair. It had to go. So after my midwife came for a visit to check on little bubs, I video-called in my husband, while my mum shaved my head. Watching it all fall to the ground made the whole experience quite confronting, and stirred an episode of tears. …right up until it turned into laughter when my beautiful husband launched into song, singing Sinead O’Connor’s “Nothing Compares” to me over the phone!

Come December, the second round of chemotherapy was a whole different story. Weekly Monday sessions for 12 weeks, I had little in post chemo symptoms or side effects aside extreme fatigue. Also, by this stage, in fact right on Christmas Eve, I had ditched the beanies, and embraced wearing a scarf over my head. Running late to get ready for celebrating our traditional polish Christmas eve evening at my Aunt’s house, I wrapped, twisted and tucked 2 scarves over my head in a rushed matter of 5 minutes, and somehow pulled off one of my best looks yet since starting treatment. So scarves I wore thereafter, but only for a matter of a few weeks, before I got both lazy and a bit more confident to just embrace my baldhead, which was already slowly showing signs of hair regrowth.

In late January, and after various consultations with fellow professionals in Australia and abroad, my oncologist related some good news. That I would only need to complete 9 of the 12 chemo treatments as I was responding to the treatment with little side effects, and 9 was determined a sufficient amount. We had planned since last year that I would have to cease chemo treatment once I reached my 36th week of pregnancy and resume again post-birth, to provide time for my body to ensure all the chemo was out of my system before bubs arrived; and hence not leave bubs exposed to any residual chemo, especially once out earth side, and no longer supported by my immune system, and left to fend off of his own vulnerable and underdeveloped immunity.
But with this new information, we decided I would complete my 9th session, and if all was well, complete a ‘bonus’ 10th session, and then deem my chemotherapy treatment concluded.

On my 36th week of pregnancy, I sat my 10th and final chemotherapy treatment. It was Monday the 11th of February 2019. As usual, at the end of my session I had to run to the bathroom, as I had been pumped so full of fluid over the space of a few hours. This time I went once, and then twice. Then I said my goodbyes and thank you’s to all my amazing chemo nurses. I walked out of the ward with my mum and Aunt, and whoosh, um, I had to go again. By this stage, I was a bit worried. I thought chemotherapy had now made me incontinent. How inconvenient. As we walked to the car, I had another whoosh. I held tight till we got home. As I scurried into the house, I had another whoosh, but this time so big it ran all the way down my leg. I waited an hour, and then a second with periodic whooshes happening down below. I was so confused. Did I just have a failed bladder or had my waters broken. Because they couldn’t possibly! I wasn’t supposed to have bubs for another 3-4 weeks and Danu wasn’t flying into the country until Friday! I finally called my midwife, who insisted I come back to the hospital, this time to the Maternity Ward to get checked out.

Fourteen hours later, at 8.37am on Tuesday 12 February, my first-born son was born by natural birth. Miraculously, he was strong and chemo free.

My husband arrived from Indonesia later in the week on the Friday and walked into the special care nursery where we had been staying to meet his son and reunite with his wife after 3 and a half months of living apart, he in Indonesia and me here, in Geelong. It was a nice moment.

We had 7 glorious weeks of freedom – my husband and I – with our newborn to adjust to our new family dynamic. I was even successfully able to breastfeed, and I loved it. But we couldn’t lose momentum of the treatment we had completed to date. There was more to do, in effort to provide me the best opportunity for a long life ahead without any secondary recurrence of cancer. So, at the beginning of April, I had a mastectomy of my right breast. I was originally scheduled in for surgery 2 weeks prior, but had become a hormonal and emotional mess after learning that I had to take medication to cut of my breast milk production. I loved the connect I had with bubs when he was breastfeeding, and that I could give him the best possible nutrition, custom made especially for him. I didn’t want to just stop. I had to do a lot of rationalizing and self-healing with myself to accept the inevitable. To my absolute delight, however, my breast milk was still coming right up until my surgery. I breastfed my little one in the waiting room right before being wheeled into the operating theatre. As I lay on the operating table prior to being put under the anesthetic, I apologized to my surgeon that the meds didn’t work…my breast milk was still coming. But secretly, I was over the moon about it.

Surgery went well. As expected. And I’ve been able to breastfeed right until now. It had been a struggle for my husband to understand the purpose of a mastectomy. You have to have the surgery first to then know if I had any remaining cancer in the breast. How could you justify it if the pathologists found nothing. What a waste. But what’s a breast when we are talking about a full long future ahead. It did turn out in my case, that the mastectomy was indeed justified.

My personal life project is almost done. In two weeks I commence the last phase and milestone of this journey; the radiation therapy. Five weeks, every day, Monday to Friday. Easy. And all in all, a year long project successfully completed, with very positive results. And then back to Indonesia with my family for another new adventure.