2018:

This is my personal diary of my breast cancer journey. I’ll have my updates on here regarding where I am with the disease, and some random mumblings as well.  Thank you for walking alongside me and for reading my story.

WARNING:

THIS PAGE MAY CONTAIN GRAPHIC IMAGES AND STRONG LANGUAGE
Please always consult your doctor for medical advice

No one ever said it out loud… but yes, it was Breast Cancer.

December 2017 – One random night

I lay in bed half asleep, its late, but I’m still up. I’ve been fighting off this cold sore, so my body is hot and itchy. My fingers lazily scratch around until they reach a warm lump. Wait, what is that?? I feel around a bit more, its a hard, small nodule. I can move it around between my fingers. I poke it, well, it doesn’t hurt.

Could it be Cancer?

I lay in bed frozen and suddenly awake in fear. I remember this weird chance encounter I had. I was at Christmas Market and somehow ran into another asian lady also named Sylvia. That name isnt very common so I strike up a conversation, “Oh, how did you get into leather working?” She told me this crazy story of how she picked up the skill during her breast cancer treatment. I was shocked..and impressed at the same time.. she was so young, she seemed so much… like me… 

My mind starts racing for what seems like a very long time. “I need to call my doctor, this is weird, I’ve never had anything like that.” I tell myself I’ll get it checked out tomorrow, and uneasily fall back asleep.

Early January 2018 – The Followup

We first met Dr. W because we needed a family doctor. We were initially impressed by his credentials and worldliness, but then blown away by his caring and patient bedside manner. In all my years in walk-in clinics, most Doctors can’t wait to get you in and out so Dr. W’s slow and careful methodical style really stood out. He was the one, and it felt good to have a family doctor again.

About 3 weeks before, I had started all the tests for Dr. W’s new patient intake process. I had the routine bloodwork, PAP test, and a breast examination. We found nothing at the time, so as I was sitting in Dr. W’s waiting room, half of me was wondering if the lump I found suddenly grew in the span of 3 weeks. However, the other half knew that that would be impossible…

“Sylvia I will examine you now if that is alright? You said it was around here?… Ohhhh yes.. there is something there.” Dr. W assured me that it might not be anything worrisome, “You know sometimes it could be a lump of fatty tissue that’s hardened…” I think to myself; are you calling me fat somehow? I’m not fat!

“…Did you ever injure yourself there? No, hmm, well just as a precaution, I will ask the diagnostic clinic to scan your left breast area as well.”

Jan 8 2018 – The Look of Worry

It’s the day of the ultrasounds. I’ve been feeling pretty good as I’ve been reading that most breast lumps are benign (aka not cancer, up to 70% of them even) and Google knows everything right? I arrive at the diagnostic clinic and they get me gowned up in blaring fushia pink. The technician is initially cheery and lets me know that the Radiologist is present, and will tell me if my lump is anything of concern right away.

She wastes no time and gets started on my left breast. The gel she applies is cold, and as I lay there with my tiny boob exposed to the world I’m secretly glad that I’m older now and have learned a long time ago to love my body the way it was. She probes around.. and I detect on her face a frown. She’s pauses, then says, I’m going to get the radiologist if you don’t mind. She might as well have said, “Damn girl, that shit don’t look good at all, let me check with the cancer guru.”

The radiologist calmly strides into the room and re-examines the area, “Mmm, well its not a cyst, you see… “ The radiologist and technician exchange medical jargon. Unfortunately for me, I knew what a cyst was… and the fact my lump wasn’t, was bad.

“We’re going to get you a mammogram, and maybe a biopsy right away. Do you have time? Are you in a hurry?”

I say that I’m not in a hurry and I’m ushered to another waiting room. This one is dotted in pink, there’s breast cancer posters hanging on the wall and carefully placed brochures from various breast cancer foundations. It’s now that I find my heart racing, and its hard to breathe. I could tell from everything that was going on that it wasn’t good. Do I have breast cancer? Am I’m going to die? I struggle to fight back the tears, I really don’t want to cry right here, right now.

The mammogram machine is cold and uncomfortably presses until you have to mentally block out the almost pain. Probably the fact that I was panicking on the inside didn’t help either.

The other technicians run through the other diagnostic tests with no real alarm. At the end of it all I have to return for the biopsy on Monday.

I struggle to return to normalcy as I get ready to move to my dentist appointment. My Dentist declares that I have wonderful teeth, which is the best news I’ve heard all day.

Jan 15 2018 – The Rift in My World

I have been glued to my phone anxiously awaiting the report from my biopsy on Monday. The biopsy process itself wasn’t bad at all, we’re all discussing the over-competitiveness of recreational soccer as the technicians guided this thick needle after freezing my “lump”. Then we all watch the ultrasound screen as it “CLICK” swiftly stabs the dark nodule repeatedly in multiple directions. “Like a Ninja” I remember thinking.

I pick up my phone and its my Doctor’s assistant, my results are in. I want to find out now so I schedule an appointment right away. Best to get this thing resolved.

Sitting in Dr W’s room again… I’m fidgeting until he arrives. He’s always very thorough so he explains the whole process up till now and why it happens.. I’m tuning out until I hear: “…its a malignant growth…”

Malignant? I know what that means… That’s Cancer…. How??

“What does the pathology report say?” I ask struggling to understand. “Its showing that its invasive ductile carcinoma“

Carcinoma… That’s Cancer….. What??

I’m trying my best sitting in that chair.. to be okay. To take it like a champ.. But I can’t. It’s Cancer, and I break down. “Do not worry, I will send an urgent request to the followup clinics where you will join hundreds of people going through this” ….”I’m glad we caught this earlier.. You can still live to be one hundred years old… You have friends here…” Dr. W tries his best to comfort me. I apologize for my tears and walk out of the room devastated, my world is hurtling fast somewhere I don’t want to be.

I call my husband – No Answer

I text him – “It’s Cancer”

I call my boss – “Its bad news”, “What do you mean bad news?” “It’s Cancer….”… ” Oh…um… well is it a light cancer?”

What the hell is light cancer??

I call the community group I’m involved with – I need to cancel tonight…

I’m sitting in my Yaris. Tears streaming down my face, chest heaving, my whole being welled up in disbelief and sorrow. I recall all the other times in my life that I’ve sat and cried in a car. This will be one I remember.

Somehow, I make it home. And Marc arrives soon after. We embrace each other and cry.

Cancel iloveyycc society plans…..Hang out with Amy and Danny… realize everyone is going through something. We’re all human. Wondering if I shouldn’t have canceled the meeting.. maybe distraction and meaningful conversation would have been good for me.

Jan 21 2018 – Turning point

Before heading to church, I really feel like just giving up.. on everything. I’m good, lived an full life as in … suffering. I’ve been through a lot already. I’m tired of it and I’m done, I have no strength to go though something like this. I want to just let it happen and pass away, good bye world.
Somehow after service bawling my eyes out during prayer and on my way home… I somehow feel like maybe I should try. That I would fight this. I’ll try my best.

JAN 22 2018 – Walking zombie

It’s only been 2 days after… feels long… it was a very hard weekend. First day at work… its hard to concentrate.. through all the conversations I just feel like “I dont care”
I get a call from the Calgary Breast Health Clinic:

• Consultation appointment with Dr .D.Austen on Jan 31st 2:45 pm
• First floor, North Tower, Parking might be an issue

JAN 23 2018 – Reprioritizing

Meeting with HR, they are great and super understanding
Meeting with the Manager, he gets sad
Resign as URISA president, Resign from GeoAlberta….so many well wishes
I’m beat… repeating the same news going through the same feelings over and over again.

Quit everything, stop all that stuff you’ve been doing that you never wanted to do…
I just want to sleep.

JAN 24 2018 – A day of melancholic photographic reflection

I can’t get out of bed, I feel like lead and I am completely emotionally exhausted, so I call in to work to take a flex day.
I had so many plans for my day off…
What should I do?
Take pictures…. edit them… I look sad and that makes me sad.

This is me pre-surgery. This is the last time I will look this way. I wonder if my left breast will look weird after this. Will I still be desirable? Will it all be okay?

Later on in the day we have an awesome condo meeting. Everyone showed up, cared and agreed on everything.. I step down as Condo president. The years that I filled that role was a ones of drama and a bain of my existence. Man if it was as easy as this all the time it wouldn’t have been a problem and I wouldn’t have been so damn stressed out. Is it so strange.. that a good condo meeting would make me so happy. OMG I need to get out more.

JAN 25 2018 – Trying for normal

Back to work. I actually feel…. happier today… lighter.
I can joke with my coworkers… act like nothing happened. I’m still pumping myself full of turmeric and veggy powders and all things healthy…
Then my Director talks to me….I’m perfectly fine, until he asks me if I’ve told my family yet… he’s touched a nerve… one I hid so well but he found, I cry again. I just want to stop crying. I just want to have a normal day.

JAN 26 2018 – Mom

Talked to mom.. interesting conversation we walk to the coffee shop hand in hand. Somehow her cute story of workplace love gives me hope. I can feel her strength and somehow it makes me a lot stronger.

JAN 27 2018 – The Friends You Love

Today we watch a play Empire of the Son, then I visit one of my closest friends Doug. We share a spaghetti dinner and I bring Kale salad. Doug is ever so positive like my mom. They remind me of each other in their resilience and outlook. It’s a good night.

JAN 28 2018 -Coffee and Wills

Before that.. I try to focus on sorting out and fillings out my will application. Just in case… remember feeling its a weird coffee shop task… then. Meet up with 2 girlfriends for coffee and we talk, I remember thinking its good meeting up with friends.
Visit my nephew and for a few hours we chase me Turtle around the universe.
Back at home and start researching burial grounds and what now… man… this will definitely make someone feel melancholy
At the end of the night I can barely sleep for no real reason… dreams of black pepper and tumeric

JAN 31 2018 – Meeting the Surgical Oncologist

Its the day of the consult, I’m amply armed with my mom and my husband by my side.. we walk to the hospital together in the bitter cold.. and in the breast health clinic waiting room.

Dr Austen is courteous, to the point and gentle.. He starts to explain the next steps by drawing on the sheet covering of the patient’s bed.
I have two choices… lumpectomy plus radiation… or mastectomy. I feel a chill as he mentions the word “mastectomy”. I’m not sure if I’m 100% ready to lose my whole breast… even though there was cancer in it…..

I push the emotional side back into its cage.. and turn on business mode…. “whats the probability of recurrence for both?” Its the same….. did it mention any special markers on the cancer… its ER/PR+ and HER2-. The “Best” kind of cancer, the slow growing.. My mind goes to my bosses’ reference of “light” cancer…. How long are recovery times for both?… I’m taking Theracumin.. will it affect it…. no….. Stage 1-2 best guess right now…Still counted as early detection

I thought I would get a lot more information… but the truth was and I came to realize this.. was that they weren’t 100% sure. There was more waiting to come. More journey… more speculation.
I make a quick decision for the lumpectomy.. the surgeon seems to agree and says that radiation seems to be well taken by young people… young. He’s talking about me. I’ve seriously stopped thinking of myself as young when I turned 30… but apparently breast cancer in ladies younger than 40 only makes up 4% of patients… lucky lucky me.

We leave the appointment feeling strangely upbeat though. Feeling like the chances were pretty good. My mom is happy with my choice. There’s a chance I can dodge chemo???

Feb 2 2018 -Date with a Knife

Its been a more normal week at work. I feel mostly back to my old self most days. I busy myself with work.. the things that need me.. so that I feel needed. And I’m okay for a while…just a while. I even crack a few jokes, mentally checking myself when I start to get frustrated, “hey, it’s really not that important is it?”

The phone rings, with an efficiently stark voice on the other end. The surgeon’s secretary pragmatically rattles off potentials for my surgery date. “Are there any dates that don’t work for you?” “No, I’m pretty open” I say, “How about Feb 15th?” I’m suddenly shocked at how soon it was.. knowing that I was completely free, I stall, “ummm just let me check my calendar…” I buy myself a few seconds of realization. “Um yes, that date is okay” The secretary continues to prattle off more marching orders and I dutifully scribble notes as fast as I can.

Hanging up, I find myself in a tizzy.. Its so soon, I need to pack my desk, finish those instructions, book training meetings, omg I still need to sign my will…. its so fast…
But inside I know, its not so much all the things I needed to do, its that suddenly. Everything feels so real.

FEB 8 2018 – Time for Class! Preparing for Surgery

Helpful notes from AHS Surgery class:

• List of safe recommended breast cancer websites to visit in the blue bag, there is a lot of bad web information out there…
• If its in one lymph node then they check bone and liver to see if spread.. CT and Bone Scan
• Fertility: Hormone therapy Tamoxifen will put you into straight menopause… but you can stop it .. have kids… maybe.. and go back on it
• If you go for the lumpectomy can always go back and get full total and reconstruction anytime.. 5 yrs..?
• EMLA use whole tube, take tube cover whole areola and skin around.. Saran Wrap your boob on top and go.
• Compassionate Beauty Calgary for breast cancer bras and prosthesis and stuff… Kenron 16 AV NW is good store for it too..
• Sentinel Lymph Node Biopsy… you have to be at the hospital for 2+hrs bring a book
• Can shower but.. don’t scrub it.. where your X is
• Do housework and meal prep before the surgery day
• On surgery day someone MUST drive you home, 1 hr in recovery room, lumpectomy takes about 1-1.5 hrs
• After surgery…encouraged to get up walking etc… anesthetic takes 6 wks to get out of body sometimes. Can’t drive for about 1 wk?
• Dressing stays on for about 48 hrs
• Once home MUST PHONE SURGEON SECRETARY for follow up appt in 7-14 days
• Let it breathe after 48.. dressing is really to collect wet stuff
• Leave Steri strips on as long as possible, no baths, showers are okay can get wet but not soaked.. pat dry
• Lumpectomy should be able to move arm area everywhere as normal
• In future.. if lots of lymph nodes removed start having blood work and stuff on the other arm
• Usually pathology results will follow after 1-2 weeks
• Great books to check out: Be a survivor, The Inbetween Days, Breast Cancer Husband

FEB 12 2018 – Leaving work and Radiation

Today they told work what really happened to me. I’ve been putting on a brave face; saying I’m packing early in order to go on vacation. In hind sight a horrible Kind excuse because that invites questions, “How long you going for? Where are you going? When are you coming back?”

All questions I wasn’t ready for… and wasn’t prepared to lie for.
A few coworkers emailed me today… they sent me their well wishes.. and said that a few people were teary… For some reason, I didn’t expect that reaction and, after hearing their reaction, I became sad.

The melancholy playlist in the background didn’t help, and I fully found my self being.. (throwback to the 90s) Emo. My energy is suddenly sapped, reminded of my diagnosis. The iron sits on the living room chair, waiting to be put away.. but I just don’t care.

Radiation Therapy class

• Radiation destroys DNA in cells, healthy cells can repair but cancer cells are “dumb” and can’t repair themselves
• Measured in grades… or centigrades, they try to balance between damaging cancer vs minimizing side effects
• Simulator appt is where they put the markings on you, that takes about half hour then in 5 business days you start radiation
• DO ARM EXERCISES FOR 1 YEAR to reduce risk of Lymphedema
•  Might have permanent skin changes… not as elastic..
• DON’T get pregnant during this time
• Side effects can peak at the end.. about 2 wks
• Glaxal Base or CeraVe (Walmart), NO METALS. NO FRAGRANCE, HYPOALLERGENIC, Moisturizing, Aloe… not recommended, no perfumes, can remove glaxal cream clothing stains with salt water
• No hot or cold compress on area
• You can use cold cloth or put cream in fridge
• Light exercise helps with fatigue
• Diet: Avoid high doses of antioxidants of Vitamins of A, C, E in PILL FORM
• Multivitamins Vitamin D and Calcium are OK
• Up to 2 servings of soy food is fine per day
• Use tons of cream… tons, if its hot.. itchy, or dry more cream
• Stay hydrated: drink lots of water, or decaf teas

FEB 13 2018 – Enemies and friends

A coworker brings over flowers, a heart-felt card and home cooked food. The same girl that made my life hell for a year. She sheds a few tears as she tells me how sorry she feels, I’m not sure what to think of everything but I’m touched by how affected she was by the news. I remember a nurse saying

“Some of your friends you’ll never hear from again after they know you have cancer, then other people you barely knew would become super helpful.” #Realtalk.

I have a great afternoon with another girlfriend at the spa. Felt so good to have a mini getaway. Early Valentine’s 9 course dinner with wine pairing and hubby was very nice too. I’ve been trying not to drink since getting the news but today I do. Forgot how nice it feels to be buzzed.

Night before the biopsy. It’s a pretty harmless procedure I think but I end up having a super vivid nightmare. Things go wrong with my procedure. I look down and there are pools of blood on the floor. They take me to a room for the biopsy and I see stretchers of women crying out in pain and there’s blood all over the floor. They keep saying they have to inject me through stomach…. I keep saying no I’ve been told you just stab me in the boob???

FEB 14 2018 -Sentinel lymph node biopsy: Finding my lymph nodes

After getting the bent over by my overstimulated subconscious, I wake in the crazed stupor of the dream. My alarm rings once, twice, then barks at me.. I keep putting it off. Because once I start with the EMLA cream it will be real.

9:05 am.. I need to get this stuff on… I clumsily cut up a zip lock bag since I have no Saran Wrap in the house. And grab the tube and head to the washroom. “Like icing a cake” I replay the nurses instructions in my head. Open the tube.. a blob spits out. Oops! I start applying.. damn.. I’m supposed to be using gloves… ahh whatever.. I keep squirting the tube out trying to make the neatest ring of numbing icing around my tiny nipple. After some effort I survey my work of art. Cover and tape it with medical grade tape.

The technician was young, super friendly, and nice. I’m laying topless in a room that looks like it was acceptable in the 80s and its starting to get cold now even though I have one blanket on. I regret not asking for that second blanket that was offered earlier.

Soon after Dr T comes in and explains the procedure, “I’m cleaning the area now and when the needle is injected, you might feel some stinging, kind of like a bee sting” Dude I’ve never been stung by a bee in my whole sheltered life…. The technician offers me her hand for support, I hesitate for a minute… but then giggle and grab her hand in a last minute decision.

I feel two spreading swells of “bee stings” and all it costs me are two face scrunches. When its all done, I triumphantly I put on my clothes and head down to the cafeteria for food. Man, don’t I feel like a drama queen. It was just two little needles in the boob. Not bad at all!

I walk by two elderly ladies hanging out in wheel chairs at the hospital on the way to the basement. I smile and say Hi to one of them and she says hello back. I’ve always wanted to live a life of giving back. I wanted to spend most of my days helping others, but mostly I think I’ve failed miserable in this regard.. save for maybe a handful of volunteer trips here and there. I hope somehow that my small smile warmed the sweet lady’s heart just ever so slightly.

I look around me in the hospital cafeteria.. everyone eats together here, doctors, surgeons, nurses, patients. I wonder what their stories might be, what their lives are like, and how they mean something special to someone somewhere.

The imaging room feels like something out of Stargate SG1. You know, the one good season with Teal’c and his friendly stomach worm that gives him super powers.

FEB 15 2018 – Surgery Day

I’m not sure if I slept much last night. My anxiety isn’t as bad as the biopsy night before. But I’m as nervous as anything. I carefully pick out my surgery outfit: front-zipping loose sports bra, Adidas athletic tights… just in case I decide to run away, and a camouflage print hoodie; for the fight of course. We have be at the hospital at 8:30 am even though my surgery isn’t scheduled till 11:20 am.

When I get to admitting, the receptionist is a leathery looking older lady. You can tell that she’s one of those types that don’t take any nonsense for no one. “Alberta HealthCare Card and photo ID please… now wait over there”

When I come back the second time to be processed she’s quite a bit friendlier. “You’re so young to be getting this… oh and the time that they make you wait for the biopsies.. I don’t know why it takes so long.”

She places the admitting bracelet with my details on my wrist and wishes me all the luck for the surgery. Its the shortest bio I ever read:

Sylvia Leong, female, August 1982.

We wait for a few hours in the Day Surgery area… once again.. the youngest of the crowd. A lot of people are wheeled out with eye-patches… we see other kissing their loved ones on the beds before they’re wheeled off to the surgeries. Cataracts? Do you think they’re doing cataract surgery here?

Waiting in holding area…
Marc and I are pretty upbeat, cracking small jokes constantly and looking around at all the medical equipment. They don’t have a bed for me yet.. but thats actually better since I don’t feel like a “patient” as much. I’m gowned up now down to the birthday suit; I bring nothing with me except the socks on my feet. I look pretty ridiculous, the house coat goes all the way down to my feet as I’m pretty freaking small. But I make the best of it by practising my dance moves in the gown until the bed arrives.

It’s time…. they wheel up the bed, get me to jump on, take off my glasses and I do the double Kawaii followed by the royal queen wave to Marc as they start to push me away. The nurse chuckles “Oh the Queen wave now eh,” looks over to Marc,” Don’t worry we’ll drug her up even more after this though I’m not sure she needs it”

Since the glasses are gone I can now see nothing. I’m completely powerless in this bed.. hands clenched tightly under the sheets. They push me down a few halls to the operating waiting area.. then I’m parked…Fuzzy blobs of people are wheeled

I really wish I could see… as it would satisfy my curiosity to observe what’s going on and therefore not think about what’s going to happen to me.

After a few minutes they push me around the corner hallway in front of the my operating room. Now that I’m alone… facing the first surgery of my life, sadness washes over me.. I allow myself a few tears… I’m alone, and I’m scared.

Dr Austen pops by, I recognize him through the fuzz. “How are you doing?” The Anesthesiologist pops by “Any reactions to anesthesia that you know of ?” IV guy pops by, clumsily and painfully puts my IV in.

I’m pushed into a large bright room where I meet two more gowned people. On the way the anesthesiologist pushes a whiff of numbing magic into my IV. “Just a whiff” he says. The nurse introduces me to the rest of the operating team, “Can you tell these two which side we’re operating on? “The left side”

Okay now shimmy onto this bed, I know its a bit narrow. I shift over.. and lay down.. I feel the bee sting into my IV, and then, Nothingness.

“Sylvia…. Sylvia” Someone is calling my name, I woke up like a fog was being lifted over me. Initially feeling good to be conscious then being overwhelmed by a searing pain over my chest. I struggled to find my hands in the fog, both of them, I’m in so much pain I’m clenching the sheets, only half knowing that I’m doing so. I don’t want to breathe the pain burns so hot, I’m holding my breath, for a minute I wonder if both my breasts are gone. My throat is dry and I struggle to swallow. I can see my vitals fuzzy on the monitor and the clock reads… 3:30?

My face, must have showed agony… the Nurse asked me.. How are you? Are you in pain? I nod furiously, On a scale of one to 10 with 10 being total agony and 5 being tolerable where are you? “six? Seven?, Seven, please tell me the magic number that will bring me drugs.

FEB 16 2018 – Chinese New Year

It’s Chinese New Year, the first day, one of the most important. My surgery fell on reunion dinner day but our family decided to move the celebrations. I’m amazed at how mobile I still am and I pretty much feel no pain. Was it the drugs I asked for…? How long do they actually last?

FEB 17 2018 – Family

The family celebration dinner. I’m absolutely tired from helping with the prep and everything that went on. Played with my nephew a bit with his trucks and sandbox… but I’m drained. Calling it an early night

FEB 18 2018 -16 Hours

I must have been exhausted from yesterday because I think I’ve slept for 16 hours straight and I didn’t even feel it. My mom gently prods at the door… “Sylvia, are you still sleeping? Its 2:40 in the afternoon….”

FEB 19 2018 – Naps

Another 3 hr nap. Then I sleep into 11 am. This is the mutha-f**kin life.

FEB 20 2018 – Cancer University

Its a bit weird attending these classes at Hospitals…. as I walk through the halls I pass endless patients, most of them older ones battling the ailment of the day. I’m always the youngest person in these classes… and always a bit self conscious too. I still have all my hair.. ( and would love to keep it as well)

Lymphedema Class

• Holy Cross has rehabilitation oncology for a whole bunch of treatment related side effects
• Body has 600-700 lymph nodes.. circulates lymph fluids and immune system 30-50 in armpits
• Lymph nodes don’t heal with radiation therapy will affect risk of lymphedema
• Might be good idea to wear compression stuff when doing running, strenuous activity
• Light weight resistance program is good for risk reduction
• Water exercise is awesome for it.. learn to swim???
• Tai Chi maybe also good… acupuncture etc.
• Tom Baker Cancer Center Rehabilitation Oncology helps
• Flying, anywhere longer than 4 hrs… try wearing compression?

An older lady is wondering if she should fly to Europe if there’s a sale.. but she doesn’t want to risk “activating” Lymphedema…. My inner voice is almost asking.. “Why? Why would you let that stop you?”

I need some cancer friends…..
Someone I can talk to about this shit. No one else will really get it.
Call the psychosocial Oncology department to joint support group, no classes till April…. Sigh, everything is work. Even this.

FEB 21 2018 – Insomnia

Only slept a few hours last night… trying to coax myself to sleep with lemon balm and sleepy tea by the fire.

FEB 22 2018 – The Youngest

I’m winning the award for youngest person in these classes. 3 in a row! Though today there are two asian women and one Indian lady in the class
I’ve been feeling up and down the last few days. I seem to have lost feeling under my armpit… it feels so weird. Apparently feeling could or could not come back. Well I guess only time will tell then.

Nutrition and Breast Cancer Class
* Sugar feeding cancer is a myth, but cut down refined sugars anyways dat shit ain’t good for ya
* Soy 1-3 servings per day..”normal” forms of soy is fine per day
* Flaxseed oil is fine, but not too much “ground” flaxseed
* Try not to lose weight when you’re going through treatments
* LIMIT SEDETARY BEHAVIOR!!! i.e. Screen time
* Resistance training might be good….
* Dark, brightly colored veggies
* Limit red meat – i.e. beef and pork
* LIMIT Alchohol = 1 drink a day. 5oz wine
* Ensure supplement either has a DIN or Health supplement number cause that means its regulated by Health Canada
* For supplements pretty much anything you can eat, but watch out the types of supplements and dosage

FEB 23 2018 – A bad day

Its been a few days after surgery now, some days almost pain free, I’ve been using the arm and for the most part it’s pretty good.
But today there’s been more pain. And I realize I’m frustrated simply because my motion is fairly limited.. and my arm feels weaker..

Everything seems to involve paperwork too. You want counseling, or to take advantage of a class. Paperwork. Time off work, paperwork. Wills and beneficiaries… so much paperwork. Seems like nothing worthwhile happens without paperwork, and its true with Cancer too.

Paperwork, homework, reading on the internet.. looking into breast cancer groups, or young adults with cancer leads to reading stories. Many of them way more grotesque than mine. Everyone says mine is early.. early detected… but what does that mean. The fear of recurrence is real, Cancer cells are sneaky, and reading these stories brings another wave of realization. Realization of my mortality.

I’m sitting in my basement, its dark and I’m staring at my ipad… tears rolling down my face. What is it?.. Frustration.. disbelief still. Because aside from being cut, I don’t feel sick. I don’t feel sick at all.

Early detection, maybe saves me from harder treatment and better odds, but I feel like I’ve been handed a label, that I now have a best before date; expires in 10.. maybe 20 years..? 55? Means I might not live to see retirement. Knowing that Cancer is probably going to kill me, maybe not now but maybe later. Well, I guess everyone dies of cancer nowadays. One out of two people.. according to the cancer society.

Alone, is when I’m always face to face with the truth, and my fears.
My boss calls, the department would like to do something for us.. a cleaning service… grocery delivery… anything. I’m very thankful, but its hard to go from being a normal person.. to the patient. Victim of disease. Helpless.

FEB 28 2018 – A good day

I woke up this afternoon and my arm is noticeably stronger. Still sore here and there.. but a lot better. Afternoon? Yeah I said that one of the Pros to having cancer would be Sleep… sleeping in every morning, and sleeping whenever you really want to.. unlimited sleep.

FEB 29 2018 – Meditation and Enlightenment

Thoughts on purpose, suppressed emotions, visions:

A large rooted tree dies to spread, I’m tossed in an emotional turbulent sea

MAR 3 2018 – Everyone should do Stress Management Class!

Stress management class – dept psychology oncology
* Simple visualization can bring about real physical bodily reactions.. but the “mean” person isn’t even in the room
* Emotions and thought are related!! Need to understand your thoughts.. it can be cyclical thoughts reinforce bad emotions which leads to unclear thoughts
* Ex. Anticipating test results, anxious thoughts = physical behavioural reactions = unclear thinking
* We then lash out with the ones closest to us
* You might be in pain but you don’t have to be a pain
* Over-pleasing is a sign of stress as well
* Change your thoughts to manage your stress level, it will never be zero but I can be less
* It’s not the event that brings emotion its the perception about it
* We remember bad events, but we take for granted our happy moments
* Look for your triggers…what is your past triggers PROCESS them
* Every emotion is telling you something messages but they could have amazing functions
* What is that emotional motivating me to do and how is that working for me, but allow yourself to feel emotions, rent out like one hour to scream, cry, worry, but the other 23 hrs are for other emotions
* Practice mindfulness: engage 2 senses in your present and in what you’re doing right now, try a mindful mediation class, its an attitude
* Engage with reality
* People have different angles.. because truly that’s what they see only, area of conflicts and contention, if a certain view is inducing stress in your life, change the way you look at it
* We are all prone to distortions
* Types of Distorted thoughts:
* All or nothing thinking: i.e. I have cancer life is over, but if you buy into this thought 24/7, you act like your dead even though you’re alive
* When you’re thinking has been engrained and overly strong, its easiest to address that cycle through the resulting behaviours
* We CANT control emotions, we can kinda control thoughts but not always, but we can fully control our ACTIONS
* Actions can create new realities to us to generate healthy thoughts which go back to our emotions
* Minimizing or Maximizing
* Should have could haves
* Cognitive Restructing, reframing inaccurate thoughts:
* OverlyNeg: no point of making plans.. recurrence will happen
* Balanced: I may or may not have recurrence but worrying wont change the future so I will make the most of each day and focus on leading a healthy life
* OverlyPos: If I ignore it its not there. Being positive doesn’t mean you don’t get sad or you don’t cry
* Steps to Cognitive Restructuring:
* Awareness: what am I saying to myself?
* Beliefs: how much do I believe what I just told myself?
* Emotion
* Challenge: question it, whats the evidence against it, how do you know if it is true? TEST your belief
* Delete: replace the inaccurate statement with a more balanced response
* Evaluate: How do you feel now?
* What is your thought is not distorted? We move to Coping
* You cope by the way you think about the situation OR altering the behaviours in the situation
* What is controllable? What will you do with it? Remove your distress, eliminate your problem.
* Uncontrollable – do things to bring the distress down, use emotion focused coping, how can I live well with this?
* Water those other things, even a walk, hot shower
* Accept negative emotions you have EVERY right to be sad
* Active vs Passive coping ….passive doesn’t ultimately solve the problem (safety behaviours)
* HOW do we COPE
* Recognize situation, whats controllable vs uncontrollable
* Generate strategies to deal with each
* Set goals to execute
* 3 types of Activities improve mood (Natural antidepressant):
* Pleasure – sensory experience
* Accomplishment – what makes you feel accomplished
* Overcoming Avoidance
* You need to do 2 or more of these
* Find cheap, simple easy to fit into day, and within your ability, don’t compare to what you were doing before
* Or you can choose to be a legacy
* When you can’t get get going on anything cause you’re so depressed:
* Graded Tasks – break up task into small ones
* 5 minute rule – do a task for 5 minutes.. if you cant go on stop, but if you can go on
* Prediction Log – decide activity, predict your pleasure, do it then compare the number

March 14 2018 – To Chemo or not to Chemo

Chemotherapy. This was the word I had been hoping to never hear.
Somehow I’d been guiltily hoping my cancer journey would be a little extraction, a little Chernobyl experience.. and back to normality. That I would somehow be able to dodge…

Chemotherapy. If I drew a word map it would be the first word that is written next to the word “Cancer.

Chemotherapy; the resentful, unapologetic, destructive partner of “Cancer”, its a hair-eater, fertility-crusher, nerve-killer, toenail taker, energy sapper, brain fogger, et cetera et cetera.

Everything I’ve heard up to this point was fairly positive. “We caught it early” “its the slow growing kind” So I was mentally prepared for surgery and radiation… prepared for major lifestyle changes. (I’d gone almost vegetarian overnight). But as the words Chemotherapy echoed through my ears when the pathology report was reviewed, I just froze in disbelieving stupor.

“Why do I need chemotherapy again?” I asked the surgeon. My 3 nodes that were removed were clear, and my margins were good. Both great results.

“Its because your cancer cells are grade 3, and show lymphovascular invasion, both of these factors…. We’re not saying your cancer spread, but we just want to preserve your longevity”

Mostly I just keep nodding and saying okay, okay. Okay doctor. But as I walk away from the breast health clinic, I unravel.

Later on that night.. when my wits are more about me.. I scour medical journals for Lymphovascular invasion, grade 3, node-negative breast cancer. And well… I guess the numbers are in the Surgeon’s favor. Some of those little grade 3, invading buggers might have escaped and might be floating around…. looking for another home.

Chemotherapy. I guess I forgot to mention that it also kills Cancer.

Types of Chemo drugs for breast cancer:
* AC-T – doxorubicin (Adriamycin) and cyclophosphamide (Procytox) followed by paclitaxel (Taxol)
* T-AC – paclitaxel or docetaxel (Taxotere) followed by doxorubicin and cyclophosphamide
* TC – paclitaxel and cyclophosphamide
* doxorubicin and cyclophosphamide followed by docetaxel
* CAF (or FAC) – cyclophosphamide (as a pill), doxorubicin and 5-fluorouracil (Adrucil, 5-FU)
* FAC followed by docetaxel or paclitaxel
* CEF (or FEC) – cyclophosphamide (as a pill), epirubicin (Pharmorubicin) and 5-fluorouracil
* CEF followed by docetaxel or paclitaxel
* EC – epirubicin and cyclophosphamide
* carboplatin (Paraplatin, Paraplatin AQ) and docetaxel
* docetaxel and cyclophosphamide

Read more: http://www.cancer.ca/en/cancer-information/cancer-type/breast/treatment/chemotherapy/?region=on#ixzz59lfSa8d1

March 21 2018 – Regressed

I was probably a bit impatient, wanting to get back to normal as soon as possible. Pushing my exercises, activities… and well maybe it was just that one unlucky fall when all the snow fell on ice that one day.

So I pulled something in my surgery arm, and have been fighting fever and aches for a few days now. The pain brought me back to day 2 of surgery.. and its been 4 days now.. and I just groan every time I move. But other than that.. I’ve been quietly awaiting my consultation with my oncologist… Quietly waiting.. just passing time.

Complementary Therapies
* Integrative Oncology is treating the whole person: body, mind and spirit
* These therapies are evidence based
* Increase quality of life that come alongside conventional medicine and increase efficiencies of them
* Categories of CTs
* Mind-body: Meditation, hypnosis, imagery, yoga
* Biologically based: Vitamins, herbs
* Manipulative Body-based Methods: massage, osteopathy
* Energy Medicine: Reiki, acupuncture, healing touch
* Alternative Medical Systems: naturopathy, homeopathy
* Yoga Thrive programs multiple places in the city
* Study inclusion criteria: Human participants
* Amifostine – A drug that helps to protect from chemo induced toxicities
* Glutathione (GSH) can get oral supplements – asparagus, broccoli, avocado and spinach
* Cannabis – Sativa
* Chemo induced nausea
* Analgesic (pain)
* Appetite stimulation
* Where to get it: Natural Health services natural health services.ca
* 1-844-262-0942
* 5809 Macleod Trail Calgary
* Consult is free
* Try to avoid Dairy, Fish is good, Chicken eggs… okay but PLANT-based diet first and foremost
* Cancer Chat Canada – for young women Survive and Thrive Canada
* Marc Webster – Oncologist
* Email turmeric studies to Dorothy
* Willow Park Salon – Lenny

March 27 2018 – Mrs W, a Breast Cancer Warrior

I ran into Mrs W again after Integrative oncology class. She struck me as very inquisitive, constantly asking questions during the class. But at the coffeeshop she stopped by to chat, and we talked about our shared experiences, and medical journals we’ve read.
She wanted to meet up another time, to pass on a book: “Bald is better with earrings” to me. This book was given to her from another breast cancer survivor as well. I thought the gesture was very kind and we had another great 2 hour conversation talking about life, chemo, and family. I made a mental note to also pass on the book, hopefully helping someone else.

Chemo tricks from Mrs W:

• Biotene toothpaste and mouthwash – Tom Baker or Cambrian drugs
• Vitamin B6 supplement for Chemo for nerves
• Cold feet and hands freezing for neuropathy
• 24 hr Claritin for bone pain… day before chemo treatment
• Thrush – mouth… there is a medication for it.. have prescription ready
• Lipocils eyebrow eyelashes = for keeping eyebrows and lashes amazon
• Try to go to look good feel better class at AHS
• Douglas Laboratories Slow release Melantonin 4000 IU..?
• Books Recommended:
• * The Breast Cancer Survival Manual – 6ed – John Link MD,
• Chemo Secrets to Thriving – Roxanne Brown

April 3 2018 – The building anxiety

It’s been getting closer and closer to the consult date with my oncologist…. Dr T
He doesn’t have great reviews on rateMD their either great of really really bad, and Doreen has been pushing me to call to request another one.. her stance is… well why have an oncologist that is not 100%? But I’m letting the chips fall where they are. And trusting that maybe it will all turn out okay with him.

I think I’ve been trying to push this next stage completely out of my mind but one day I realized that I was just walking on eggshells all day and the next day the feeling kept building and building. Now the appointment is tomorrow… and I’m almost at my wits end.

If a sloth could panic, I think thats exactly how I feel at this moment. I’m perpetually frozen on the inside as if by hiding and being still, somehow chemo and cancer won’t be able to find me in my secret place.

Someone asked me how my viewpoint on life has changed. My most glaring personal question though has been mostly how to be okay with all of this and how to make my actions and life count.

To answer the first question I think the answer was really to be absolutely okay with dying. That everyone has a time, it will happen to everyone, and mentally. I needed to be okay with not being.

To answer the second question… well its been a lifelong question of mine. Will in be in the small seemingly unimportant acts of kindness that I hopefully will extend? Will it be in a decision to swing my career in a completely new direction. I’ve promised myself and myself only because I’m always afraid in telling someone else that I will disappoint them in my inaction. But I know its time to make better decisions with whatever time will be allotted to me.

Another friend over lunch mentioned another person who had much more advanced breast cancer. She had beaten it 3 times actually… But her attitude was instead of saying why me? Say Why not me. This lady apparently has worked in refugee camps and seeing the level of suffering in those places really put her own suffering in perspective.

Most days I am weary though. Feeling sorry for myself… I endured my parents rocky relationship and divorce when I was 12. Emotional abuse at childhood and throughout my teens and twenties. Had a very unhealthy first boyfriend at 16. Another manipulative emotionally abusive relationship for 8 years until I was 25. I struggled for many years to even get to a place that looked like “normal”. To get to a safe place mentally and to learn to like myself. Maybe got there in my 30s. And now this, Cancer. But why not me.

Eventually my parents both got to a better place. It took 25 years, but they both smile more now. I went from no relationship with my father to one where he’s able to tell me he loves me and I could say it back. I found faith and through that I found my self worth. Through faith I saw transformation of my father. Something I never though would be possible. And the long silent story of abuse and manipulation in the church, saw an end in my life as well. And I have survived…managing hold on to faith. I have stories. And if asked I’m strong enough to share. Share in order to give hope. And the knowledge that whatever you go through. Eventually you will be okay.

April 5 2018 – The Twist

Our meeting with Dr T went quite well. I cannot describe the almost panic attack I had the night before meeting him.. my mind getting way ahead of me again. But to my surprise… there was one more determining factor to my chemo/no chemo question.

Another gene test… OncoDX. I had read about it online. So apparently if your score is less than 18 chemo would only benefit your 10 year survival rate 2%. Not really worth the side effects. Dr T mentioned most times the scores come back low… so there’s a chance I could be spared!

We left the meeting with Dr T quite upbeat. But it meant more waiting. The waiting time however.. we could use to our advantage as we’ve been consulting the fertility doctor. If I were to need it or choose chemo, only about 50% of women get their periods back….therefore 50% no chance of kids.

I’ve always been on the fence about kids for most of my life. I guess I’ve always felt ambivalent about it and have been waiting for that magical biological clock to start pounding in my body and somehow I would know it was time. However I’m fast approaching 36 and that clock still seems to be on snooze. Many of my friends were already engrossed in their new families and once in a while I couldn’t help wondering if there was something wrong with my hesitation for children. Or maybe, just maybe, there wasn’t anything wrong with it at all.

We met up with the fertility doctor anyways so at least I had all the options on the table

April 19 2018 – Counting Blessings

I had a whole two weeks to burn, and by now physically I’m feeling pretty close to 100% so I was able to really reflect on well for a change, all the good that there was in my life. There had been kind of a fog that’s been hanging over me the whole time…. and I’ve been finding it hard to really motivate myself to go and do certain things. I made a mental list of stuff I was going to do… clean up around the house… finish off a photography project, clean up all my old stuff at my moms house, paint. All of which I suddenly lost all motivation to do. It’s like I developed some sort of box complex. An aversion to sedentary tasks because I thought it would kill me, or maybe just a complete loss of interest in things that used to excite me.

April 25 2018 – Twenty Four

Finally it was the day of my results. And wouldn’t you know it… my score was right smack dab in the middle. Grey, no man’s land, the meh zone, Switzerland. A score of 30 or above chemotherapy is recommended as the cancer you have is more aggressive and faster growing. A score of 18 and less means yay, no chemo for you! I scored ingloriously right in the middle.

Dr T went over the graphs and charts with me. If I choose to go on hormone therapy alone, my 10 year disease free survival stat would be around 84%. If I choose to add the chemo regimen… this number would rise to about 90%.

So would you like a 16% or 10% chance of metastatic stage 4 cancer in the future? The choice was up to me.

If you remember my earlier breakdown post about chemotherapy. You might remember the long list of potential permanent side effects.

May 2 2018 – Tamoxorage

My mom accompanied me to the Holy Cross pharmacy so that I could pick up my meds. Since informing my oncologist that I wouldn’t be doing the chemo, the hormone therapy would start right away. She listened attentively to the pharmacist who interrogated me on my current list of supplements and then proceeded to prattled off the list of supplements that I shouldn’t ever take.

May 8 2018 – Normal, just a normal day. You’re allowed that!

July 2018 – Summer Rads

Radiation seems to be flying through with very little resulting symptoms on my end. I had a bit of swelling, Some tiny shooting pain but nothing really that bad… and hardly any skin reaction at all! I’ve been applying my lotion right after every treatment and I think its definitely been helping.

My Radiation Oncologist is a peppy young blonde who is very optimistic and bubbly. Almost like a typical valley girl but in this case with a medical degree.. probably two in fact. She examines me every week and sometimes just exclaims, “Are we even treating you at all??”

I do feel the fatigue building though… its quite hard to describe. Something similar to jet lag perhaps.. I’ve been driving myself to daily appointments and there are definitely some sketchy moments right after treatment when I kind of regretted choosing to drive. Towards the tail end of my treatments I finally rely on my husband to ferry me to and from the radiation.

After a month of daily treatment… and a few more weeks to recover. I’m finally given my “you’re done cancer treatment” bill of health and was allowed to return back to …… well life.

There’s a bell of hope at the Radiation reception desk, most cancer survivors going through treatment will get to ring the bell loud and clear when they’ve reached the end of their cancer treatment journey. For some, the journey is long.. painful. For others, the journey is shorter. But everyone’s journey is different.

When I rang my bell..I almost felt ashamed. I felt didn’t suffer as much as other people might have, I didn’t do the chemo.. and radiation was kinder to me in terms of reactions, my surgery healed well. My range of motion was not overly compromised.. (I had done those exercises religiously).

Yes I still had pains here and there and every time I feel an uncomfortable tug, or a shooting pain. I’m reminded of my mortality.

I rang my bell softly… you could almost not hear it…. I didn’t want to disturb anyone with my end of treatment. But the receptionist turned to me and said “Go on, give that a proper ring!!”

Perhaps in her wisdom she knew that whatever my journey was.. it was still a cancer journey. Worthy of a bell of HOPE.

July 3 2018 – Hereditary cancer and genetic testing

* Genetic factors are only one portion but usually there are multiple factors that result in a cancer i.e. lifestyle, family history, exercise etc.
* There are high risk BRCA 1/2 and moderate risk genes that may act with other risk factors
* BRCA1-2 might also be risk indicators for ovarian cancer as well
* Genetic testing really looks for mutation in a certain gene i.e. BRCA is failing
* 3 possible results after a gene test, positive-mutation found, negative-80% are these, inconclusive
* Genetic discrimination is prohibited by law in Canada

Nov 2018 – Picking up those pieces; Therapy and Discovery

Dec 2018 – The Rebuild and The Aversion