Cancer Fabulous Diaries

We’ve teamed up with Sylvia Soo to create a first-of-its-kind resource for young women going through breast cancer: Cancer Fabulous Diaries.

Cancer Fabulous Diaries offers practical advice and important coping techniques from young women with breast cancer as well as a variety of health care experts. It combines the raw, surprising, and completely absorbing musings of Sylvia Soo (based on her diaries) with the stories of other young women on single life, love, marriage, best friends, babies, clothes, work… and what happens to all that when you get breast cancer. A moving first-person account, as well as a practical handbook, Cancer Fabulous Diaries documents the journey from diagnosis to recovery.

Date: March 23
I’m Feeling: Physically TRAUMATIZED
I haven’t told many people about my mysterious lump.

My friend Delasi drops me off at the breast clinic. as I sit in the waiting room, I notice I’m the youngest person here. The next youngest person must be at least 40. When it’s my turn to see the doctor, she examines my breasts and feels the lump. I’m a little relieved when she says it’s probably just a knot, common among asian women.

The next 20 minutes result in an ultrasound. A warm gel is applied onto my left breast, as a contraption glides over my breast to reveal a picture on the screen. The lump measures over 2 cm. I make a mental note that it has grown from the time I found it last July and from the time I went for a check-up earlier this year.

The sonographer doesn’t sound as optimistic as the doctor. She suggests that I do a biopsy because she’s not sure what to make of the lump. I consent to having the biopsy done right then and there.

I’m so nervous.

I sign a form and then return to the ultrasound room. I hate needles. The sonographer uses a local anesthetic to freeze my left breast and it numbs instantly. She then informs me of the loud clapping sound that I will hear each time a sample is taken. My left breast is sterilized, and then I hear the awful clapping sound as the hollow needle sucks a sample from the lump. It stings and I clench my hands together into a tight fist. The assistant assures me it’s going to be ok. All I can do is pray that it’ll be over quickly. The second clap seems louder than the first and I wince at the sudden sting. Finally, the last one goes off and I wince again as I feel another sharp sting. I let my breath go and the nurse cleans me off, puts some dressing on the small wound and sends me off with an ice pack.

I hope it’s nothing because I can’t handle anything more than this. – Sylvia Soo

 

Date: March 26
I’m Feeling: Winded
Doctor: “Hello, is this Sylvia Soo?”
Me: “Yes it is.”
Doctor: “I have the results from the biopsy. Are you driving?” (I’m in the car with my dad.)
Me: “Um…no, I’m not. Is it bad news?”
Doctor: “We found something.”

I feel like I’ve just been slammed into a brick wall. I can’t talk to the doctor. I ask her to call me back. My heart beats faster but I appear to be calm. I say nothing to my dad and we continue the drive to my brother’s house. A thousand thoughts race through my mind.

When the doctor calls me back a couple hours later, her words whiz past me. I feel like this isn’t happening to me. Finally, I break when the doctor mentions chemo. The tears flow down my face and all I want is a hug.– Sylvia Soo

Date: April 8
I’m feeling: Like I’m running out of time
Today I saw the fertility doctor. Sigh. Another thing to think about. Depending on the chemo cocktail I’ll have to take, it could affect my ovaries, causing me to become infertile. Sadness. So my option—along with all the other options—is to freeze my eggs.

The chance of me becoming pregnant (when I decide to) is 30% with just my eggs, 40% if my eggs are inseminated. This led to the topic of how serious my boyfriend and I are. The doctor almost made me teary-eyed when he said that in a way I was lucky that we are going through the “war” early. Sometimes, he said, Mr. Maybe becomes Mr. Right if he decides to stick around through all the tears, aches and pains. My boyfriend has been really sweet and supportive, but I don’t think I can ask him to do something so serious, so early on, no matter how much he tells me he loves me. I might go with the egg-only option.

Also, there is a drug available that I can take while doing my chemo—Zoladex. Taking it creates a higher chance that my ovaries will remain operational after chemo. It shuts them down, possibly preventing harm. As a result of all these hormonal changes in my body, I will be like a 50-year-old going through menopause. Early menopause, that sounds scary. But, luckily, I’m young and my body will have no problem bouncing back after I stop taking the medication. The doctor said that having no periods and experiencing hot flashes and sleep disturbances will be the least of my worries compared to chemo. FANTASTIC.

After my doctor appointment, my mom took me shopping. As I roamed the produce aisles with my lists of “what to eat” printed off the Internet by my mom, I got a little emotional. Now I’m sitting on my brother’s couch, watching reality TV out of the corner of my eye. I’m tired but waiting for Kelvin to finish his time on the computer so I can see if my boyfriend is online for our last chat before I go under the knife. I can’t believe I’m going tomorrow for my sentinel lymph node biopsy. I’m tired. Somebody called me today and never left a message. I’m confused because I’ve met so many people in the last three weeks and I can’t remember who is who. – Sylvia Soo

Date: April 9
I’m feeling: So damn hungry
My day started bright and early at 6 am with a shower. Then I received my daily phone call from Delah to tell me everything was going to be all right. She’s such a good friend.

The blue dye wasn’t bad at all. I was so scared it was going hurt like the biopsy, but I didn’t feel anything. As the nurse injected me, all I could think was “Thailand, Thailand, Kenya, Kenya,” beautiful memories that helped me distract myself.

After I was injected with blue dye, I was free to leave for a couple of hours. When I returned to the hospital, the rest of the day was torture. While I lay on a flat bed, they took four pictures of my lymph nodes with a special machine that I’m assuming was an X-ray. I was already beginning to feel little hunger pains. Fasting before surgery makes no sense to us hungry people. Then I went to see what time I had to check in at day ward for my sentinel lymph node biopsy. Unfortunately, they made me check in early. This really sucked because it was 11 am and I was bored out of my mind an hour past my surgery time at 3 pm when they finally came to get me.

The only thing that kept me sane was listening to the other patients in the room. A thin curtain separated my bed and that of the patient next to me. I could tell by his voice that he was an elderly gentleman, probably in his sixties. By way of eavesdropping I learned that he had tumours removed. What surprised me about this man was his cheerful attitude—surgery had not phased him one bit. There was not an ounce of self-pity in his voice. In stark contrast was the patient across the room. I watched and listened as she griped and complained about every single little thing. Note to self: be more like the cheery man beside me.

Every once in a while the smell of toast wafted by. I decided that I was definitely having toast after my surgery. With each ticking second, I wondered if I was going to die from dehydration. Finally, it was my turn. My surgeon came to answer any last-minute questions, then the anaesthetist saw me. After a few more minutes of waiting, I was pushed into the operating room.

The room was very sterile. The sad process began. First, the IV, which the stupid anaesthetist couldn’t get into me, caused blood to run down my hand, then the intravenous needle hurt soooo bad as he pushed it in further. Finally, when the drugs were pumped through, it hurt! I was gasping for air because i could hardly breathe. I glanced over at my hand, which was red with blood, and then I blacked out.

It seemed like two minutes later when I tried to make sense of my surroundings. Through the grog, two nurses exclaimed, “you’re done!” My throat was so dry I could not respond. I could almost feel the indent of the tube they had stuck down my throat. I was wheeled back to the day ward, where I passed out. – Sylvia Soo

Date: April 18
I’m feeling: Frustrated
Today I was supposed to leave to visit my boyfriend. I lost $200 for cancelling my flight, but that’s not what makes me sad. What makes me terribly sad is that I don’t feel that I can leave. I can’t even talk to a medical professional because everyone’s closed on the weekend! The doctor said I have up until the day before the surgery to decide on the procedure— lumpectomy or mastectomy. For someone who has a hard time deciding what to order at a restaurant, I suddenly have to decide what to do with my body, my health, my life—in less than a week.

I guess I never thought I could die at an early age, and now it could be a reality. I can’t believe this is happening to me. Last night, as I spent time with my family and talked with friends, I realized how much this is affecting not just me but everyone else.

Death has never been more than a distant thought. Now it’s different. You always see ill people, you always hear of people dying, you always read of people getting cancer, but you never think it will happen to you. With each day I realize that I’m not invincible. One day I’m here and the next I could be gone. Just like that. I could die. I’m a person just like everyone else. It’s a weird thought. I’m a human like everyone else, and, yes, death is a possibility. My actions affect other people. I can’t just gallivant away because I’d have a lot of worried people thinking about me. That being said, I’m young. I can fight this thing. From now on I have to make smart decisions. I know that every second I delay could be a second off my life.

I’m not sure who dealt me my deck of cards, but it’s a bad set. I am always in control, but now I have no control and I don’t know anything anymore. Delasi spent the day with me yesterday. We talked about life. We talked about dying. My perspective has changed. I see a baby and wonder if I’ll ever have a baby. I see a couple and think how nice it would be to get married one day. Thoughts that were very far from my mind are much more closer. I know it’s not good to think negatively, but right now a tomorrow could realistically not be my reality. And all I can do is wait. – Sylvia Soo

Date: April 17

I’m feeling: So sad

Words cannot express the sadness inside me. I am so sad, so very sad. My surgeon told me that the cancer had spread to two of the four lymph nodes they removed. The next three minutes of what she said whizzed by me. Everything has changed. The decisions I’ve already made need to be re-evaluated.

Reconstructive surgery won’t be able to happen for at least a year. If I have a mastectomy, I will have one breast for one whole year.

I tried my hardest not to cry. It was really hard when the surgeon herself started getting teary-eyed as I stared deeply into her eyes. I had to look away. The tears finally came as I drove away from the hospital with my brother. He gave me a hug. I’ve never truly known the power of a hug until this whole cancer thing.

I went to Tim Hortons with my brother and Delasi. It’s clear that they are against me going to visit my boyfriend in Korea before I have to really deal with all this cancer stuff. This is a hard decision. I went back to the clinic to find out the earliest they could get me in—next Thursday. I feel like two weeks can make a difference, perhaps the tumour could grow even more. The doctor said it was OK for me to travel, but it’s not her body, it’s mine.

Emily called. I know she understands how hard it would be for me to go ahead with the surgery without seeing my boyfriend first. Sunny, from Korea, called too. I have such great, great friends.

The tears really poured out when my boyfriend told me he’d be upset if I came to visit him. He wanted me to take care of it ASAP. I cried and I cried and I cried. I’m so sad at this point. I was really looking forward to the trip. -Sylvia Soo

Date: April 20
I’m feeling: Hopeful
Today I switched nurse navigators. My last nurse navigator was causing me too much stress by being non-existent: not calling me, not checking if I was ok, not letting me know what my next step was. My new one is much more helpful and she made sure that I didn’t have to worry about surgical pre-admission procedures by calling and making sure they were in place. The surgeon’s secretary has also been really nice, setting up the necessary appointments, including an additional mammogram, a chest X-ray, bone scan, etc.

I talked to my surgeon again, asked her more questions and requested a different anaesthetist for my upcoming surgery.

My surgeon gave me the phone number of one of her patients who is the same age as me who is a breast cancer survivor. She is in her last stages of reconstructive surgery, and, like me, she loves to travel. It was so nice to talk to someone my age who has gone through what i’m going through.

My brother set up the dresser for me in my new room. Finding out that I had breast cancer one week after returning from an overseas job had left me homeless, living out of suitcases and sleeping in my sister’s bed. My brother and sister-in-law suggested that we all move into a three-bedroom apartment. I guess I can finally put my stuff away and give up hopes of flying away from all my troubles.

Thankfully, things are finally coming together after a whole month, and it is such a huge relief. I know the surgery on Thursday won’t be fun, but having people doing their jobs (aka healthcare workers) takes a huge load off my shoulders. Though i’m still struggling with whether i’m going to have a mastectomy or a lumpectomy, things are looking up.

I wonder if my boyfriend will stick around through all this. I know he’s the kind of guy who likes to take it day by day. While i’m not a girl who likes to jump into things, at a time like this, I really need someone to be there. Even if he can’t be here physically, I really need him emotionally.

I don’t know how having one breast would make him react, one of the reasons why I don’t want to have the mastectomy.

It’s such a hard thing when you love someone and you wonder if that person who has told you that he loves you so much will be there when all is said and done. It’s not something I can think about right now. If that’s the case, I hope he lies until i’m better and able to handle another loss. – Sylvia Soo

Date: April 24
I’m feeling: Not too shabby
Yesterday morning, after four hours of sleep, I woke up, showered and checked in at the Miseracordia Hospital at 7:15 am. I was feeling great. When the nurses told me that they were ready to bring me to the operating room I got a little teary-eyed, but soon enough I was cracking jokes with the lovely nurse who cracked them back at me all the way down to the operating room. Sabrina followed behind, snapping picture after picture like the paparazzi, except I wasn’t famous, just her big sister.

In the surgery room, the anaesthetist was gentle. I woke up, what felt like two minutes later, in a groggy faze with my whole family standing before me. It was already 9 pm! I experienced a few dizzy spells that were quickly fixed by the drugs my nurse gave me. Thankfully, mom stayed overnight to make sure I was ok and to help me go to the bathroom.

I woke up feeling fantastic and was discharged at 10 am. Taking a shower that night was interesting. I undressed and looked at my naked body. In the mirror, a robot stared back at me. Drains and tubes stuck out of my body, and an array of gauze, bandages and dressings lay on the counter before me. The left side of my chest, where my breast was taken, was sunken and bruised, in its place a thunderbolt scar zigzagging across my chest. I had Googled enough pictures of mastectomies to not be weirded out by my own body. Showering took twice as long as normal.

I have to empty the JP drains and I can’t wait to get them out. I don’t find them that disgusting, although I am lugging around miniature cannon balls of my own blood as it is suctioned from tubes extending from my body. It’s more of an inconvenience than anything.

The pain is tolerable. There’s just a slight tightness in my chest and my armpit (where the lymph nodes were taken) looks a bit strange. However, in time I should be good as new. Now I pray for good news when the results from the biopsy come back. – Sylvia Soo

Date: April 25
I’m feeling: A little more than all right
Today when the home care nurse came to my house to see if my drains were doing their job she was completely surprised to see me open the door with a huge smile on my face. As she checked my bandages, she mentioned that she thought this visit would be very hard because of how young I am, but she exclaimed how that wasn’t the fact at all.

The first weeks were hard. However, I feel like the hardest part is over, having to make one of the toughest decisions of my life—whether or not to take off my breast.

I think people are surprised when they see me upbeat and happy. I don’t want to feel handicapped, because I’m not. I’ll continue to be the independent woman I am. I want to hear happy success stories. I already know about the odds of dying from breast cancer. I know that death waits and reaches its nasty claws out at me, but I am a fighter. I want to surround myself with positive people.- Sylvia Soo

 

Date: April 26

I’m feeling: Claustrophobic

LAST NIGHT WAS A NIGHTMARE.

I am completely frustrated. I want to rip these damn drains out of me because they feel so uncomfortable. I want it to be a year from now. I want to be settled and find a new place so I can get back into a routine, so I can stop forgetting everything and remember what is going on in my friends’ lives. I want to start my career. I just want some damn sleep.

LAST NIGHT WAS A NIGHTMARE. – Sylvia Soo

 

Date: May 4
I’m feeling: Frustrated
It started on Saturday Night. My arm and the length of my wound started tingling. When i emptied my drain, it measured 30 ml rather than the usual 17 ml. I thought it was strange.

When I woke up the next morning, there was a lot of tension in my arm. I brushed it off as a result of my arm exercises from the night before. As the day progressed, my body started to feel achy. My muscles and joints started to hurt really badly. Around 3:30 pm, I lay in bed wanting to cry. Then I started to get the chills. Around 5 pm my brother, Kelvin diagnosed me as having the Swine Flu.

I called the nurse hotline at the insistence of Kelvin. The nurse told me to go to a doctor. It was Sunday, so I checked in at ER. The doctor was super nice. After realizing I was a chemo patient with a possible infection spreading throughout my body, he got me in pronto! When I went to pee in the cup, I was so focused on my pain that i totally forgot to do it!

I had to get blood work and two IVs because the first IV didn’t work. I also saw two different doctors and two different nurses because of shift changes! I was extremely sore and could hardly move.

My little sister, Sabrina, watched me tear up as I lay in the skinny hospital bed. She rubbed my head and tried to distract me when I had to get my IV. I had to close my eyes because I didn’t want to watch the look of horror on Sabrina’s face as she watched the IV go in. The first sample of blood that they sent to the lab was clogged when it got there, so they had to draw some more blood. They gave me a urine test, some blood tests and a drain swab. After they gave me antibiotics through the IV, I was done! It had taken three and a half hours, relatively short for an ER. They kept the IV in my arm and asked me to come back the next morning. I took a Tylenol 3 to relieve the pain and when I woke up I was overcome with nausea.– Sylvia Soo

Date: May 7
I’m feeling: Grumpy.

The fertility doctor told me that the 30% chance of me becoming pregnant if I saved my eggs was now only 5% because the procedure they thought the province was going to get approved didn’t get approved.
This would leave me spending $4,000 on a 5% success rate of slow-freezing eggs. That’s if the 50% cost-reduction request sent to Capital Health gets approved. The other option is the drug that pushes me into menopause.
That’s if the 50% cost-reduction request sent to Capital Health gets approved. The other option is the drug that pushes me into menopause.
Ladies who don’t take the drug have an 11% chance of ovary re-function a year after chemo versus 66% for those who do take the drug.
Days, people and facts are starting to blur into one blob and it’s hard for me to remember things so I try to write everything down. I guess the real reason for my frustration and grumpiness is that the infection really and truly knocked me to the floor emotionally—and my non-existent boyfriend doesn’t help.

He broke up with me. Yes, that’s right. Right before chemo.

I try to push it out of my mind. I feel that he’s scared of the whole cancer thing. I don’t understand how he could say I was the best thing that ever happened to him and he loves me so much…and then watch me walk out of his life without a fight. He says he’s not happy with his life, so he can’t make me happy. I thought he’d be there for me. Having to deal with this is hard, but I guess it’s better than having to deal with it during cancer treatments.

I’m still the same girl—the same girl who he shared long walks, long talks and good laughs with. I’m still the same girl, cancer or no cancer. It’s frustrating watching the world race by as I stand alone amongst the flurry of colour. – By Sylvia Soo

 

Date: June 2
I’m feeling: Flustered
So I’m utterly exhausted and nothing seems to go as planned. I’ve been running around like a chicken with my head cut off all day. Now I’m sitting on my chair, waiting for the laundry to finish drying.

I’m still trying to get used to my short hair. It definitely makes me feel different and i’m not loving it yet, but it is what it is, I guess. I’m sure by the time i’m used to it, it’ll be time to shave my head.

Tomorrow I go for chemo. I am a little nervous because I don’t know what to expect. I can only envision myself being very nauseous. However, I took my anti-nausea steroid just a few hours ago. I also had an injection of Zoladex in the tummy to temporarily shut down my ovaries, and blood work to make sure my white blood cells are armied up for chemo! I feel all drugged up. Tomorrow I have to be up nice and early for my four-hour dose of chemo drugs. Bring it on. – Sylvia Soo

Date: June 6
I’m feeling: Like I’m hanging on by a thread
I’m not going to lie. The last three days were rough—and when I say rough, I mean rough. From the time it began to feel rough, it was like watching an hourglass full of sugar counting down the time. The sugar never seems to fall fast enough, and as I write this I’m still overcome with occasional bursts of nausea. It’s been three days and it sucks.

I was crazy to feel excited for my first day of chemo. That feeling quickly disappeared when i was overcome with nausea a few hours after completing my chemotherapy. I checked in at 8:45 am on June 3 and was discharged at around 1 pm. Shortly after, I went to fill a prescription and was on my way to IKEA to pick up a table.

It was all downhill after that. I puked in the car. I had some soup at my sister’s house, I puked in the car. I puked before I got home, and I puked when I arrived home. When I wasn’t puking, I felt like puking. When I didn’t feel like puking, it was extremely hard to muster enough energy to move, because I didn’t have an energy. June 3, nicely put, was a very bad hangover.

The next day was rough as well. I spent most of the day dry heaving, then I had to drag myself to the Cross Cancer institute to learn how to inject myself with Neulasta, a drug to help increase my immunity. At the grocery store I filled my cart with creamsicles, ice-cream sandwiches, chocolate pudding and soup. Strong-tasting foods and solids were hard to think about, and strong wafts of flavourful food suddenly made my stomach cringe. The rest of the day I felt very, very ill and only managed to eat about eight crackers, a bit of apple juice and I can’t remember what else. I woke up on June 5 and thought, “oh great, I’m still nauseous.” I felt like a fish whose stomach had been gutted out. The nurse said it would take about 24 to 48 hours for the toxins to flush out of my system but it feels like they’re still in there. My sister in law, Ebby, made me some mushroom soup. I could hardly move, two days and I’ve had hardly anything to eat. I managed to keep down a chocolate pudding, a few crackers (enough to go with the anti-nausea medication even though it wasn’t working) and some soup. I went back to bed and slept some more.

Dad picked me up and I went to get the Blackberry that Rethink Breast Cancer and Telus had sent me! I was so excited. The brief glimpse of the blackberry distracted me for a few minutes from my nausea.

By 4 pm I was feeling better. The evening went well and I had never been more proud of myself for eating pizza. No joke. I managed to keep that down, along with two wings, strawberries and apple juice. Things were looking up.

But then I woke up today and again my stomach feels gutted, as if someone took a scoop and scooped out all my insides. My head is pounding and I slowly make my way to the kitchen for a popsicle. Yes, it’s been a rough, rough, rough three days, and I only hope it’ll get better. I’m going to ask the nurse to prescribe me a different anti-nausea medication or at least to start me on an anti-nausea drip before I am sent home. My head spins thinking about my next chemo. One down (well, not quite down yet)… five more to go. – Sylvia Soo