My Chemo Journey
Updated: Nov 22, 2019
If I'm being completely honest, my journey through chemotherapy has been the happiest time of my life. Which is freaking weird, I know. It wasn't like a happy moment or memory here and there, but a consistent 3 month period of living each day in the present, and being super grateful for every moment of feeling myself. It's true that opportunities arise in times of conflict, not just financial and business opportunities but those that help you see the box inside which you have committed yourself to all along. I wish i could be so articulate to tell you exactly how I felt. The best way to describe it is that I just really let go of all the pressures I gave myself, which I have never done in the past 34 years of my life. I let others take care of me, and I stopped expecting myself to be perfect.
Two weeks after my surgery on April 18th 2019, I got my pathology report for the tumor that indicated an estrogen and progesterone receptor positive cancer, and measurements of the invasive cancer that showed it was very small despite being attached to a big DCIS tumor. Since my surgeon knew that I was extremely afraid of undergoing chemo, she recommended I send my tumor to the U.S. for Oncotype DX testing, which would examine the genetics of the tumor to estimate my risk of recurrence. Normally if your cancer has spread to your lymph nodes, you have to do chemo. But since hormone receptive positive breast cancer is the best kind you can get (least aggressive and most predictable to control with medication) and my lymph node tumor was small (they call it a micrometastasis), the doctor said there was a chance that chemo may not be effective for me. Looking back on my whole cancer journey, the only thing that I regret doing was this test. The test costed me HK$40,000 and almost 1 months wait, delaying chemo past the suggested and most effective timeline. The results were that my recurrence risk was 23, which was borderline, and the benefit of chemo would be less than 1%. I was so afraid of chemo because i knew that I would be bald and everyone would know how sick was, and this just wasn’t fair because I didn’t feel sick at all. It is incredibly hard to have your secrets worn on the outside of your skin unwillingly for everyone to see and judge. A lot of people approach me to tell me how brave I am for sharing my journey, but honestly I feel like my story would have been seen and interpreted by others if I didn’t tell it myself. I was also afraid because doing chemo would put me at risk for secondary cancers like leukemia, which I cannot even begin to fathom.
After I got my oncotype DX results, I went to a public hospital oncologist who looked like he was in his twenties. I was so disheartened by this meeting as he basically told me that the test was a huge waste of money because anyone who had lymph node involvement must do chemo. He recommended 6 rounds AC chemo (the red devil) and told me it would be really hard on my body, and that he had no stats on how well it would work and how my chances of survival are like based on my choices. He told me if it was too tough for me to handle I could consider quitting the chemo after the first infusion, which made zero sense to me! So after over 2 hours in the waiting room and talking to someone who had zero compassion for me, I walked away feeling like cancer was a death sentence. Immediately I asked my surgeon for a referral to a private oncologist, which turned out to be the greatest blessing of my entire journey. Dr. Yau met with me and explained that the oncotype test is traditionally for patients with no lymph node involvement, and he would only consider letting me go without chemo if my recurrence risk was as low as 5. Since my numbers were borderline, he held a multidisciplinary conference with my surgeon, other oncologists and pathologists to discuss the lowest risk option for my case. After their discussion, he explained to me that statistics show that 4 rounds would decrease my risk of cancer recurrence not much less than 6 rounds of chemo, but it would increase my 5 year survival rate from 93% to 96%. Despite around 1% risk of secondary cancer from the toxicity of chemo, he and all members of the conference recommended that I go forward with it, due in part to my young age. High metabolism of young patients translates to higher risk of cancer cells still present and higher risk of mortality. My doctor ensured me that he would be with me at every step and that he will have strong meds to counter any discomfort I experience. I felt so relieved to know exactly where I stand and that I will have help coping with any problems at all. Despite the high cost of the private hospital I felt that I had no choice but to choose the option that gives me most hope and both mental and physical support.
My brother flew in from Vancouver to come with me to the first chemo infusion on May 22 2019 and Jerry was there with me as well. Since my type of TC chemo (docetaxol & cyclophosphamide) is not particularly harmful to the veins, I did not need a port installed and could just have the medicine administered by IV. Jerry and I had our first post cancer fight when I got angry at him for not being smart in our transportation home from the hospital, my emotions were all over the place even though I tried to hide it. The chemo went fine and I didn’t feel anything until the next day when I started having diarrhea (TMI!) which persisted for 3 days. I took my nausea medication religiously and had no nausea at all. Apart from this, I slept for 14 hours a day until day 7. I felt nervous and not myself. I spent most of my time in my dark room listening to soft music and playing games on my phone to keep my anxiety levels at bay. Whenever I felt better I went downstairs for a walk with my daughter. After I realized that I had gotten past the bulk of unwell symptoms (not knowing what to expect is the worst), I realized that I felt weak but completely fine. My appetite was normal and my tastebuds did not change at all. I ate a balanced diet heavy in veggies, mushrooms and nuts, and I drank a smoothie with 4-5 portions of fruits a day. I read the Bible everyday, practiced deep breathing and read books that i never had time to read when I was working. There was some brain fog and trouble concentrating, so when I felt it was difficult to focus, I would keep gaming on my phone. And just like that, on day 8 I felt like myself again. After the second infusion I realized that I don’t get nauseous very much, so I gradually started taking less and less of the nausea medication which actually saved me quite a bit of money.
One particularly hard experience was the white blood cell boosting injections that I had to give myself daily on day 3-8. I always thought I was bad ass and Jerry was clumsy, but when I held the needle for 20 minutes unable to jab it in my stomach, Jerry really came through for me. He jabbed me swiftly, even more painlessly than the nurses, and he continued to do so after every infusion, 10 jabs in total. It was a heavy realization for me that I, the micromanager of all things, am incapable of so much. And if I let go and trust others, I don’t have to hold my breathe and push through. I can actually lean back and be taken care of. The bone pain in my spine was quite sharp and strong after these injections. I rarely take pain medication but I had to a few times with those nasty shots. Luckily my wbc count stayed strong and I required increasingly less injections each time.
On my second, third and fourth infusions, I experienced a medication allergy towards the docetaxol. After only a few drops of it I would see stars, experience a heavy chest, I couldn’t breathe and nearly blacked out. That was extremely scary for me but the nurses knew exactly what to do and the dripped the meds super slowly every time, taking a break from the drip as soon as i felt unwell. Every challenge really made me stronger. Letting these unexpected obstacles come and tackling them at the moment really helped me live in the moment and not too far in the future. Every time I experienced these allergies I would panic and ask the nurses if I would have to change chemo meds, one particular all knowing nurse told me, "if you relax and stop convincing yourself it won't work, it will turn out fine" - as with all things in life.
In general chemo was not that tough for me and 3 months flew by extremely fast. My hair started to fall out after 3 weeks, and it was tough, but expected. I looked really sickly without hair and the energy to put on makeup. I felt weak and tired too. But I was mentally strong and safe because I knew the meds would help me kill any remaining cancer cells. I focused on looking cute and didn’t let my fears into my daily life. Whenever I felt scared or unwell, I would pray, and the each prayer educated me about how much I am both in control and not. God says, relax and leave it to me. And God also says, I will teach you exactly what to do. And then God says, I will send some angels to help you. My interpretation of all the scripture I have read is as such - life flows downstream towards the end no matter what, but how you react to the ebbs and flows of the water (your lessons), and how much you trust the ripples and waves (God's plan), determines how much you will enjoy the journey.
If you are currently going through or will be going through chemo, I have some tips for you!
Prayer was extremely important to me during this time. I learned to let go of all these burdens of control and perfection that I was holding and offer it up to God. I was so scared and vulnerable, but I was tired of being this way. I wanted to live each day in joy and peace no matter what my outcome would be, so each morning I would look up to the clouds and spill all my fears out to God, and then I would stop thinking about them. By knowing that I am not in control of my destiny, I let go of so much anxiety and toxic stress. But by knowing that I am in control of my day which could be my last, I focused on the important things - Bevy, Jerry, Mom and Dad, Carrie.
I read that many people in the states would bring ice packs for their fingers during infusion to prevent neuropathy. My chemo nurses told me it is not useful and didn’t let me do it because the Ice could damage my nerves. After my 3rd infusion I did start to experience neuropathy, but the numbness went away shortly after my last infusion. However, it is now over 3 months post chemo and I still wake up everyday with tight fingers.
Forever wanting to be in control, I shaved my head before it started falling out. Boy am I so glad I did so because the loss is one of the most heart wrenching things that will happen in your bathroom. Mine started falling out on day 19. Once it started, I began rubbing my head vigorously in the shower to help it shed faster. The worst thing is a patchy half bald head! I actually didn't miss my hair much and I didn't cry when i lost it, but i did find it hard to exude femininity through the outfit options that worked with a headscarf. I bought some wigs but I didn't enjoy wearing them as they made me feel like a phoney, not being true to myself. It took me a while to observe what other cancer patients were wearing and experiment with scarves and clothes to rebuild my confidence. 2 months post chemo, my hair growth is already long enough for me to go out without a hat.
I am really proud of myself for not once getting sick during chemo and radiation despite my lowered white blood cell count and faltering immune system. I attribute this to good nutrition (TONS of fruits and vegetables), sufficient protein, and practicing good hygiene - cleaning the floors and door knobs with diluted bleach just like the hospital does, washing hands with soap frequently, rinsing my mouth and gargling with salt water every morning and night, wearing a mask on public transportation and when I go out. I did not enroll my daughter in any playgroup classes as I didn't want her to spread any germs to me either.
Diet and Nutrition
I had been interested in following a vegetarian diet ever since my diagnosis, but under the recommendations of my doctors I decided to continue eating meat during treatment because of the high protein needs during this time. I'm so glad that I listened to them because now I have experienced the difficulties that vitamin and iron deficiencies can cause. During chemo I ate everything - eggs, meat, minimal dairy, LOTS of vegetables. I would eat 7 to 10 portions (80g per portion) of fruits and veg per day. Everyday I made sure to eat 4-5 meals, and snack on nuts and seeds for extra protein since I was not eating too much meat. High protein is needed to repair the cells that were destroyed during chemo, so if you don't eat enough of it, cells will get their nutrition from your muscles leaving you susceptible to a lowered immune system and infections. Mushrooms are supposed to improve your immune system so I ate a lot of those too. I was advised to stock up on nutritional meal replacement drinks in case i lost my appetite, but those were disgustingly sweet so I opted to bulk up through my smoothies instead. On days where I only wanted to eat toast, I would drink an extra large spinach and fruit smoothie to make up for any deficiencies.
Some additional and very random things that helped during this time were:
Post it note positive affirmations on my bathroom mirror
a face roller to prevent swelling from all the steroids you need to take
Apply moisturizer constantly as your skin will be dried out
pretty pyjamas or robe to make you feel less like a bum who sleeps all day
Have a good relaxing playlist - I lived with Lo-Fi Beats on Spotify all day long
A meal planner to make sure you consumed enough nutrients
A lot of headscarves
Chemo beanies to sleep in (your head will be so cold!) I owned quite a few and this was the best brand.
Join a support group. Don't forget to release all negative emotions!
When you start to feel better, don't forget to exercise, breathe deeply, and get fresh air.
Please connect with me on Instagram if you are going through chemo and need a knowing friend to talk to:)