Unwritten

I’ve been struggling to put my thoughts down onto the blog. I can assure you that it is not because there has been a lack of thoughts or emotions. Quite the opposite actually. From my initial fascination of different countries’ approach to tackling the coronavirus to the realization that if I get it, I’ll likely not survive, and feeling sickened that news outlets focus their report on death tolls and the idiot who leads the country south of the border. So many thoughts, so many emotions, I simply didn’t know how to process and chose to push it all aside.

This could have been the case all along. From the initial diagnosis to receiving my 3rd chemotherapy treatment last week, whenever emotions begin to bubble up, I rationalize it away. What is the point of crying, if crying won’t help cure my cancer? This is the way I’ve always been. Rational, logical, let’s get shit done so we can do the next cool thing. (At least I think I am, maybe don’t tell me, if I am not lol) This is especially difficult to do, when each chemo treatment makes you feel like you are starting over, from the very bottom. All the progress you’ve made putting yourself back together, gets wiped out. Each round racing against time to get back as close to 100% as possible before the next dose of poison in your body. The truth is, each round, you receive 1 day of treatment and 20 days to recover. In the 20 days of rest, you never get back to the 100%. At maximum maybe 80%, and the next time is 80% of the previous 80%, and so on. And that, folks, (in my non-medical and unscientifically view) is why the side effects of chemotherapy treatments are cumulative on the body (nice way of saying it will get worse before its over).

It was finally a nice day yesterday and I decided to do some stretching and exercises out in the backyard. Never would I have thought that walking lunges would make me emotional… but they did. They did because my legs felt so foreign. It wasn’t an “I’m out of shape” weakness in my muscle kind of feeling, it felt like I couldn’t trust my legs to support me, even though they have for my entire life. I am heartbroken that my body does not feel the same as it used to, it is really hard to accept and I must learn to adapt and support its healing. (I know that once I am better, my body will be stronger as well.) I am also astonished by the healing power of the body. With each treatment, 4 bags of chemicals are dripped into my blood, to kick cancer’s ass, but that also means my organs have to work extra hard to filter and process it all out of my system.

My 3rd round of treatment felt the toughest so far. I am not sure if it’s because of the addition of a new drug into the mix, or the second round felt easy, or that the first round was kind of a blur, but this one kicked my ass physically, mentally and emotionally. And when I think about the 3 more that I need to do, it scares me. I don’t know how much more fatigued I will feel, I don’t know if the hot flashes will get worse.. The only thing I can do is to focus on that I am half way done the chemo treatments (the worst part of getting better) and take it one day at a time.

It’s been over 2 weeks since my first chemo treatment, and it’s been quite the learning. As I mentally (and nutritionally) prepare for the next round of treatment, I thought I’d reflect on my first experience and answer some FAQs.

What is the treatment plan?

The recommended treatment plan for me is to have 6 cycles of chemotherapy and targeted therapy (IV), followed by surgery, 4-6 weeks of radiotherapy, 12 cycles of targeted therapy (IV) and then 5 years of hormone therapy (pill).

How long is the chemo treatment? A full day.

Treatment day is a long day. It starts first thing in the morning (9am or earlier), I have to get blood tests, meet with the oncologist to review the results to see if my body is able to receive chemo treatment that day. If my white blood cell count, or any other important indicators are off, treatment will need to be postponed. I’m doing everything I can (fattening myself up via Mom’s healthy nutritious cooking) – so that this does not happen. My goal is to kick cancer out of my body as fast as I can, so I may continue with my awesome life. After the chemo cocktail is mixed (takes an hour – during which I have to take an anti-nausea pill to prevent vomiting during treatment), I sit in a comfy lazy boy chair and let the chemicals drip into my body for the next 3-4 hours. All in all, the whole treatment is a full day’s affair.

How do you feel after treatment? Like absolute shit.

Not gonna lie, it’s not fun. Is it worse than I imagined? Yes. I had an unrealistic expectation that I was super human and can be “better” at chemo than other people. Based on my last post (which I wrote when I felt like shit) you can tell it’s pretty shitty. I’ve since learned that when your body feels like shit constantly, it fucks with your head. I’m very lucky to have really amazing people around me who check-in with me during this and make sure that my headspace doesn’t get taken over by darkness. I think the best way to describe it is that I felt like a zombie. My mind felt foggy, I felt like I was still sleeping even though I was awake and my entire body was sore. Here’s a brief summary of the days:

• Day 1-6: I was mainly a lying down zombie. One that gets up to hunt and look for food, but then gets too tired and goes back to bed.
  • Max energy level is 30% for 2 hours a day.
• Day 7-10: I graduated to a walking zombie. I felt more like myself but still trapped inside a zombie’s body. During my “awake” times, I was able to do light exercise and had a healthy appetite.
  • Max energy level is 60% for 4 hours a day.
• Day 11-15: I have broke out of the zombie body and am fully myself again, huge improvements (except the energy part).
  • Max energy level is 75% for 6 hours a day.
• Day 16-21: I haven’t gotten there yet, but I presume it’s going to continue to be great.

What are you allowed to eat? Everything that is not raw / unpasteurized.

If you ask a dietician, they’ll tell you to eat a healthy, low sodium, fat, sugar diet with lots of fruits, vegetables, legumes, lean protein. The only real restrictions are raw foods (sushi), unpasteurized products (certain cheeses and honey) and other random foods that messes with the chemo drugs (Seville oranges, Pomelo, too much Green tea). But when your nutrition is now being managed by your Chinese mom (with input from all her Chinese friends), that list of what you cannot eat grows exponentially. No shrimp, lobster, crab, duck, beef, fried foods, processed food, raw vegetables of any kind, any kind of food that is colder than room temperature….the list goes on.

Will you lose your hair with chemo? Yeah… sigh…

Although I don’t particularly feel that I’m a very vain person, the thought of hair loss caused me the most distress. Part of me feels that once my hair is gone (breast cancer chemo drugs causes almost complete hair loss by day 15-17… so that’s in the next 2 days…EEK), the world will see me and know that I have cancer and the other part of me thinks I have an odd shaped head, so being bald just looks strange. The thought of chunks of hair falling out is also appalling. Once this happens, I will get Rom to buzz the remaining hair off. In preparation, I have purchased $160 worth of hats/toques to try on, including two that are from the Hello Kitty X PUMA edition, which I’m very excited about. Also thanks to my dear friend Hannah, I now have many beautiful scarves to rock when I want something more classy. Since the baldness is inevitable, I must embrace it fashionably.

This week I had my first of six chemo treatments. Sitting in the chair as the nurse inserted the needle into my vein, I began to cry. I am about to inject large amounts of chemicals into my body in order to heal something I don’t even feel. I don’t feel ill. I don’t feel sick. I feel healthy, normal, and yet, I must go through this process because at the cellular level, there is an illness that will take over if I don’t act fast.

As the chemo worked it’s way through my body for the next couple of days, I tried really hard to battle the side effects. The extreme fatigue that does not go away with sleep, the muscle pain, the bone pains in my hips and back, the rawness of my gums. With each attempt to resist and fight back, my heart sinks in this losing battle. There’s simply no way I can win the battle against the shitty side effects, it is all part of the process to win the bigger fight against cancer.

There is only one thing I can do, surrender. Surrender to the fact that none of this makes sense. Surrender to the physical pain the treatment leaves my body in. Surrender to turbulent emotions which is tied to how my body feels. Surrender, as this is a marathon, not a sprint. Surrender to the process. This too shall pass.

As you can imagine, the past two weeks blurred together like a bad dream. But it’s more like a reverse bad dream, where instead of waking up from the scary scene, I wake up right in the middle of the bad part.

Over one weekend, I flip-flopped 4 or 5 times on where it is best to seek treatment. Not to mention if we even had the option to return to Toronto for treatment. I was convinced that if we returned to Toronto, it means our Singapore adventures are over before it really began. But if we stayed for treatment in Singapore, the financial stress will slowly suffocate our spirits.

Apparently bad things comes in threes. After the cancer diagnosis, Rom really wanted for us to play volleyball, as it will be the last time before any treatment and allows us a few hours of feeling normal amidst all the chaos.  Unfortunately, within the first game, he pulled a muscle leading to sciatic pains, causing him to be bedridden and in pain. 

On top of this, two days prior to my parents’ arrival to Singapore from Hong Kong, the Singapore government decided to shut its borders to visitors who have travelled to China in the past 14 days in response to the Wuhan virus. (My parents frequently travel to China during their three-month stays in Hong Kong and was in China just last week, which means they are not allowed to enter Singapore.). I was really looking forward to showing them our new home, the place which captured our hearts and uprooted us halfway across the world.  I had also planned to take them to Bali during their two-week holiday in Singapore, our first family trip in Asia since we were kids. Bali is one of those places that I’ve often dreamed about visiting since my twenties… a spiritual paradise with beautiful beaches, lush greenery, cheap massages, and lots of hippie shops (right up my alley!). With Rom’s condition, my parents stuck in Hong Kong, I joked that I would go on the trip on my own.   (Which I would probably have, if I didn’t fly to Toronto instead)

Within a 48-hour period, my life completely turned upside down.  I felt I lost complete control of my life. I couldn’t hold it together anymore, there are no solutions to solve these problems, there is nothing I can do.  I succumbed to the emotions and broke down.  It was in this exact moment, when I realized I needed to be home for my treatment.  I need my parents’ to comfort me and tell me everything will be okay, I need my friends to lift my spirts up when I feel down and alone, I need to be home-home.

Whenever someone asks me how life is in Singapore, I tell them that it is amazing and express how much I love it here. And it’s the truth – I love the tropical climate and proximity to my family in Hong Kong (and other destinations), I love the efficiency and how things work as it should (like public transportation), I love that we have friends here who have made us feel at home, I love the people I work with – they have been so welcoming and helpful, and lastly I love the work that I get to do. But this game of life isn’t always smooth sailing, and today it threw me the biggest curveball of my life – Cancer.  I have early stage and highly curable breast cancer. I am ok – I am in shock, but I am ok. We are ok.

Last week as I was laying on the couch (Monday), under the weather, I noticed a lump in my right breast. It was hard, not painful and felt like it was between the size of an M&M and a mini egg.  WTF! The next morning (Tuesday), I went to a walk-in and to get a referral to a specialist. My manager recommended me to see a specialist she went to and was able to secure an appointment for me the following day (Wednesday).  By Wednesday morning, the specialist performed a quick ultrasound of the lump and ordered a mammogram and ultrasound for the same afternoon and a biopsy the next day. The efficiency is unheard of. (Although this is a private hospital which felt kind of like a hotel – equipped with a pianist playing the piano in the lobby.)

Many people say that mammograms are painful, for me it was more awkward than painful. Many articles say biopsies are painless, I say – it fucking hurts. I’ve read that 80% of all breast biopsies are benign. Unfortunately, this is not the case for me. My tumour is around 1.8cm (small) – which puts it likely at stage 1 – however, due to the cancer cell receptors testing positive for all 3 receptors – especially the fast-growing HER2 – it is considered a high-grade tumour, grade 3. (These cancer cells look very different from normal cells and will probably grow and spread faster.)

Because the tumour size is considered small and the lack of signs that it has spread to the surrounding lymph nodes, it is highly treatable (97%). However, since it is an aggressive, high grade tumour, the recommendation is that chemotherapy and targeted therapy be done to “plug” the fast-growing receptors, reduce the tumour and lower the chances it will be found in the lymph nodes. Once that is done, a lumpectomy will be done to remove the remaining part of the tumour (if there’s any left…), followed by more chemo & targeted therapy and 12 months of another drug… which I don’t remember what for. The first process (Chemo – Surgery – Chemo) is expected to take approximately 6 months in Singapore.

Side effects of chemo – fatigue, hair loss, lowered immune system, constipation, diarrhea and loss of appetite. NO MORE RAW SUSHI, oh but alcohol is ok.  (Don’t anticipate drinking, but it’s good to know.)

The diagnosis took place this morning. We are still in disbelief.  I feel like I got kicked in the gut multiple times. I have spent many hours researching and trying to understand the likelihood that the outcome would be cancerous, and if so, what are the next steps? No amount of research and “worse case scenario” thoughts prepare you for the moment that your cancer diagnosis is confirmed. We expected stage 1 cancer, we did not expect it to be high grade. We expected surgery and radiotherapy, we did not expect chemotherapy.

I am writing this to help me process my new reality and the curveball that life has thrown at me. While I will often put on a brave face, I am scared on the inside. The road ahead will be rough. I know there are a lot of people who care about me, we may not catchup often but I know I can count on you to be there through this. I am not so much worried about the outcome (because breast cancer is highly treatable, my prognosis is really good), but I am worried about the up and downs which lay ahead. I am supported, I am loved, and I am strong.

Tomorrow I will be going back to the fancy hospital to get a PET and MRI scan. These will give the team a much better view of what’s going on and whether the proposed treatment plan is still suitable. As I write this, there are a lot of uncertainties and unknowns – such as whether we will stay in Singapore or go back to Canada for treatment.  I am thankful to have an extremely empathetic, supportive management team at work who want me to get the best care and will support whatever is the best for me. Wherever I end up physically going through this, I know you will be there with me. ❤

Miss you lots.

XOXO

Kare