Skip to main content

The breast cancer community across Canada recently welcomed some long-awaited good news. The negotiation for Ibrance between the pan-Canadian Pharmaceutical Alliance (a committee representing the provinces) and Pfizer Canada has been completed.

This means a letter of intent was signed, which is shared with the provinces and territories to use when they individually fund the drug. It’s now up to each province or territory to list the medication in their jurisdiction. (Read more about how cancer drugs get to market here.)

A new option for women living with metastatic breast cancer is undeniably good news.

But as we celebrate this milestone, it’s important to remember that this one step in the process to publicly fund a cancer drug took 15 months to complete and that thousands of women have been waiting for coverage. (Ibrance was approved by Health Canada in March 2016 and recommended for public funding in November 2016.)

The process takes far too long, especially for women living with MBC who continuously need treatments to keep their disease controlled. When compared to other countries, Canadians are waiting longer for new treatments to be available.

So, while we are a step closer to having public access to Ibrance, there is more work to be done. We encourage the provinces to start funding Ibrance quickly so the patients who need it can access it. But it doesn’t stop there.

We still need to advocate for a system that includes patients’ values whenever decisions about their health are made. We need a system that is open and transparent and has accountable timelines. We need a system that stops leaving #MBCinthedark.

I hope you will continue to stand up with us and add your voice to the call for much needed change. It’s about making change for patients today, but also about making change for a better tomorrow.

– MJ

Before

Before I got cancer, I kept my hair quite long. I was the type that would freak out when my hairdresser cut it too short, which I considered anything above my shoulders.

I loved my hair. It was my shield – it protected and sheltered me. I connected it very closely with my sense of femininity and sensuality. When I was diagnosed and knew that I had to undergo chemo, losing my hair was one of the moments I feared most.

In an effort to gain control in a situation where I felt like I had close to none, I decided to shave my head the night before chemo. Leading up to that evening, I wrote a letter to my hair:

Hello my lovely hair,

Have I ever told you how much I love you? I think I have, but just in case I haven’t said it enough – I love you.

You are absolutely beautiful. I love how dark you are. I love how silky you look and feel. I love how you look down and in a ponytail. I love the way you slip out of place during yoga and blow all crazy in the wind.

Thank you for your patience while I went through my blonde phase. I don’t know what that was about. I know the constant hair colouring was irritating, especially since I was trying to change you when you were beautiful just the way you were. But I realized my error quickly enough!

I have loved traveling with you. I hope you have enjoyed seeing the world. It’s amazing to think of all that you have seen and felt – sand from various beaches, water from so many oceans and lakes and (most recently) earth all the way from South Africa. Didn’t the wind feel great? I knew you would love it when I let you down in the jeep to blow in the African wind. I think that might have been one of my happiest moments with you. Wild and free, just like the animals. It makes me smile just thinking about it.

We’re going to be saying goodbye to each other soon for a little while. It won’t be forever, but I wanted you to know that I will miss you like crazy. I won’t be the same without you. Not only are you beautiful, you’re my armour. I always felt confident with you there.

I hope you come back exactly as you are right now – dark brown (almost black), straight, silky, full (but not too full). I wouldn’t change a thing about you. I love you so much. I’ll miss you. Come back soon!

Cassandra xoxo

A close friend came over to shave my head and we expected tears and sadness. Instead, there were moments of laughter. Mom managed the playlist and poured the champagne when it was over. #champagnemakesthingsbetter When I look back on that night, I feel as though something in me both broke and was reborn. In that moment, a big part of my innocence was lost. That can be said for many of the experiences you must endure while battling cancer, but that one sticks out in my mind. To have the courage to shave your head… It’s a powerful thing. It’s a way of both losing and reclaiming your power. I’ve always known that we become stronger at the places where we break and I experienced it first hand that night. I’ll never be exactly like the girl I was before I shaved my head and that thought empowers me.

During

My hair didn’t fall out until after my second chemo. I don’t think many people realize that losing your hair is a very slow and painful process. It fell out in the shower in large clumps. I would stand there in tears and watch as my hair poured down the drain. I was terrified to step out and look in the mirror – I knew one day I would come out completely bald.

For weeks I couldn’t touch my scalp. It hurt to lay my head on my pillow and I would wake up each morning to more strands of hair covering my sheets. It seemed endless.

Eventually the pain subsided and the clumps stopped falling. I was not left with a completely bald head like I had anticipated. I had what I called an ostrich head – bald, but with random hairs scattered on my scalp. Lovely!

Style Side Note: I think it’s extremely important for women to find what works for them during treatment. I put a lot of thought and searching into my chemo look. I purchased wigs, but didn’t enjoy wearing them because they were itchy and made me overheat. I was lucky enough to find a shop on Etsy that I loved. The designer sold comfortable yet fashionable chemo hats in a variety of pretty colours and patterns.

In 2015, I came across the #NoHairSelfie campaign and was enraged. For those who don’t know, it encouraged people to use a filter on their selfies that would make them bald (like a chemo patient). As I perused the plethora of selfies, I saw a red. The people looked so happy. They were commenting on how they looked bald – whether they felt cute or ugly. I couldn’t believe that this campaign was created… And by a hospital no less. What stunned me more was that all the participants didn’t seem to see the insensitivity of their actions and comments. I assumed that they were ignorant to the fact that they were glamorizing chemotherapy, although to this day I don’t understand how it went unnoticed. I wrote a blog about the campaign (full post at this link).

After

My hair grew back quickly, and I thank my Italian roots for that. I purchased headbands and loved wearing them to bedazzle my growing peach fuzz. I had the same haircut I did when I was one-year-old and my buzzcut matched my father’s hairstyle.

Breast cancer caused me to reflect on sexuality and femininity in various aspects – hair being a major one. Society displays the ideal woman as having long, luscious, wavy tresses. Don’t get me wrong – that hairstyle is gorgeous. But not fitting the mold made me sad at times. Once again, I felt “other.” Instead of thinking of society, I thought of myself. How did I feel with short hair? What emotions did it bring out in me? Once I looked inward and stopped comparing, the answers came easily. I felt empowered, strong and beautiful. Transformed. I still do.

I’ll admit that I feel more exposed with short hair. In moments of shyness or uncertainty, I don’t have my hair to hide behind. That has turned out to be both a good and a bad thing.

I’m sure I’ll grow it out one day, but for now I’m truly enjoying the short style. I feel like it gives me confidence in a way that my long hair didn’t.

It might sound crazy, but sometimes I toss my head and go to brush my long hair away from my face. At first, this phantom motion hurt my heart – I was obviously still mourning what I had lost. Now? I smile and send a bit of love to the person I was before and thank my hair for coming back to me.

A little while after chemo, I went to pick up a package from the UPS store. The gentleman asked for ID to confirm who I was. I handed over my licence, which I forgot had a picture of me with long hair. At this point, I had super short hair but more than a shaved head. He looked at my licence and back up at me and said, “Oh my gosh! Your hair is so much shorter. It looks great. That must have been quite an adjustment!” I smiled from ear to ear, beaming because he didn’t realize why my hair was so short. I had slipped under the radar and could just be me. No cancer questions, tilted puppy dog sad faces or pitiful looks. I smirked at him and said, “You have no idea.”


Cassandra Umbriaco is a guest blogger for Rethink Breast Cancer. Since being diagnosed with stage two breast cancer at 28 years old, she combines her love of writing with a passion to help women affected by cancer. Check out her blog at cancerunder30.wordpress.com  

Cassandra loves travelling as much as she can, dresses that twirl, anything Disney and her little red Fiat – Luna. 

Living with metastatic breast cancer (MBC) can sometimes trick me into believing that my life is now essentially little more than a series of medical tests and treatments. It can feel like my identity begins and ends with cancer.

Before breast cancer, I was in graduate school and working towards a career as an equine veterinarian. I had goals. I have always thrived in the academic and career worlds—I like pressure, deadlines, working hard, and feeling accomplished.

When I started chemotherapy, I had to leave veterinary school. Even though I later went into remission, I knew that vet school would no longer work for me, so I worked hard to build a freelance medical writing and editing business instead. I felt fulfilled and proud of the business that I built. When I became stage 4, I scaled back my client load but continued to work, determined not to let go of this part of my life. When the cancer spread to my brain, my days in the work force officially ended.

I no longer have the energy to study or work. My days are now scheduled around doctors’ appointments, my weeks around infusions, my months around PET/CT scans. The word “terminal” is never far from my mind; I exist with an expected expiration date that makes long-term plans difficult at best. My primary goal is now to get through each day. My purpose in life is to survive.

In truth, I struggle with feeling fulfilled in such an existence.

Then I began to write about my experiences as a 25-year-old breast cancer patient. It started as a cathartic exercise and slowly turned into something more. I joined writing groups and built a website. I began to feel a sense of accomplishment through my writing that I had not felt since my pre-cancer life.

My writing took an exciting turn about a year and a half ago when I received an email from filmmaker and director Kerith Lemon proposing that we turn one of my short stories into a short film, bare. I enthusiastically agreed. We hoped to create something that would feel empowering for the breast cancer community, to show an honest slice of what it is like to have breast cancer at 25, and to bring some awareness to the issues surrounding metastatic breast cancer.

Bare tells the story of how three of my closest childhood friends helped me shave my head before my first chemotherapy infusion when I was first diagnosed with stage 3 breast cancer. My friends consoled me through my grief, hugged me when I cried, and helped me process the overwhelming fear that had pervaded every inch of my life since hearing the word “cancer”—fear about what would happen to me, how I would look, who I would become, if I would live at all.

In May, I had the opportunity to go to L.A. to watch the filming of bare. Part of me wanted to sob watching this scene from my life being acted out—but I didn’t want to be that girl sobbing on the film set, so I held back—part of me felt numb to it—it was all just so surreal—and part of me felt damn proud of myself. Proud that I had created something worthy of all these people coming together and working really hard to turn it into this beautiful film; proud of how far I have come since that day seven years ago when I wondered if I would ever feel beautiful again, if I would ever know what it meant to be loved by a man, if I’d have the strength to get through all that was to come. Proud that I found the strength, that I continue to find it every day, that even when I feel sick, I get up, push through, and have the experiences that mean everything.

In fact, I am more proud of this film than anything I ever worked on in school or in my freelance business. I believe that we have created something unique, beautiful, and powerful, and I accomplished my part of the project despite living with metastatic cancer, despite constant treatments, despite recovering from brain surgery and brain radiation.

Through bare, I rediscovered a facet of my identity that I thought I had lost amidst all the treatments and scans. It reminded me that my life is so much more than one medical intervention after another, that I am more than a cancer patient. I am a writer, a creator, a woman determined to continue living fully and purposefully.

Originally published in the MBC: YOUNG & STAGE IV, Vol 2, No 4 (Oct 2017) issue of Wildfire Magazine.

Bare was released in October, 2017 and can be viewed here. It was screened at the 9th Annual Lady Filmmakers Festival in Beverly Hills, California. Follow bare on Facebook, Twitter, and Instagram.


Rebecca Hall, co-writer of the short film bare, was diagnosed with stage 3 breast cancer when she was 25 years old, just after beginning veterinary school at U.C. Davis. At 29 years old, the cancer metastasized to her bones and distant lymph nodes. Despite her diagnosis, she continued to work as a freelance medical writer and editor, as well as starting her own outdoor yoga company, Santa Cruz Nature Yoga. Rebecca’s breast cancer returned again in November 2016 and spread to her brain. She underwent an emergency craniotomy, followed by brain radiation. Rebecca is now recovering and lives in Santa Cruz, CA with her husband and her dog, Harriet. Follow Rebecca on her blog, Cancer, you can suck it.

Name: Rebecca Hall

Age: 32

Occupation: Writer/Editor, Yoga Instructor, MBC Advocate

Age when diagnosed with breast cancer: 25 with stage 3 breast cancer, 29 with stage 4 metastatic breast cancer

Breast cancer type: Invasive Ductal Carcinoma; triple positive at stage 3; triple positive when first metastasized (to bones and lymph nodes); HER2+, ER-, PR- when spread to brain

Breast cancer stage: 4

Treatment: ongoing: herceptin & perjeta IV infusions (because I am HER2+), zoladex shots (to put me in menopause), xgeva shots (for my bones), femara daily pills (to mop up any remaining estrogen), avastin IV infusions (for brain radiation necrosis)

Tell us a fun fact about yourself that has nothing to do with cancer:

When I was 16, I competed in the World Equestrian Games for Great Britain (I was born in England).

What’s your go-to pick-me-up song?

It’s a little cheesy, but when I need an extra bit of oomph I put on the Fight Song by Rachel Platten. It’s my nieces’ (ages 4 and 7) favorite song, and we love to put it on and dance around the living room together. Whenever I listen to it, I picture doing that, and it makes me happy.

How did you discover your breast cancer?

I was laying on the floor on my stomach stretching one morning after a run, doing the same stretch that I had done the day before – done for years, actually – and it felt like I was laying on a golf ball. I felt my right breast and there was a lump. The Student Health Center nurse told me not to worry since I had zero family history of breast cancer and was only 25 (“25 year olds don’t get breast cancer”), but she sent me for a mammogram anyway, just in case. The mammogram was abnormal, so they biopsied it right then and there.

What went through your head when you received your diagnosis?

It sounds odd, but all I could focus on in that moment when they said I had cancer, was school. I was in a competitive graduate school program at the time, and I had worked really hard to get there. All I could think when they said those words was “But can I stay in school? How long will I have to step away from my studies to recover from surgery?” It’s not that I cared more about school than about dying or my family, certainly not, but I wasn’t ready to face the severity of my diagnosis yet. I couldn’t process that I might die or what having cancer would mean for me and my family. So, I focused on school instead. In time, I let the bigger, darker fears creep in, bit by bit.

What’s the craziest thing someone said to you after being diagnosed with breast cancer?

Someone once told me that I caused my own cancer. She said that she had spent hours meditating on it, and she was now sure that I had given myself the disease. She thought it probably happened because I wasn’t happy enough (this was someone who barely knew me!).

Who or what is/was your biggest source of support throughout your experience with cancer?

When I was stage 3, my parents were by far my biggest source of support. When I realized that I could not, in fact, simultaneously go through a demanding graduate program and chemotherapy, I stepped out of school and moved back in with my parents. I didn’t know anyone in their town; all my friends and siblings lived far away. So for the majority of that year of chemo, surgeries, and radiation, it was just me and my parents. They drove me to appointments, cooked for me, cared for me, and put up with me when I was too scared, sad, or angry to be the gracious patient that I wanted to be. Now that I am stage 4, I am married to a wonderful, supportive, caring man, and he has become my main source of support.

What is/was the most difficult part of being a young woman with breast cancer?

For me, when I was stage 3, it was the social isolation. None of my friends had been through anything remotely close to what I was going through. They were still in a phase of life when they spent most of their free time going out and drinking. I couldn’t do those activities anymore, and even if I could, I was no longer interested. We couldn’t relate to each other anymore. Plus, because they were so young, they hadn’t yet developed the tools to cope with my diagnosis. They had no idea how to be there for me. Many of them just disappeared from my life because they felt so unprepared – which left me even more alone. A few were wonderful, but they were the minority. My family was great, but I also needed my friends. I needed people my own age to talk to about guys and dating and to joke around with. After going through my first diagnosis, I thankfully found a group of friends and a husband who do have the skills to cope with my situation, and they are the most supportive, loving, and empathetic people.

What’s something unexpected you learned about yourself as a result of having breast cancer?

I learned that I love writing, and that I’m good at it. Pre-cancer, I was a veterinary school student, but it became clear pretty quickly that vet school was no longer doable, even when I went into remission after my stage 3 treatment. Then a former professor offered to hire me to write his next book. The only problem was… I was not a writer. He convinced me that I could do it, so I gave it a go, and it went really well. Since then I have started my own writing and editing freelance business, and I have written and edited countless articles, book chapters, books, and blogs. Eventually I gained the confidence to do my own creative writing. I started my own blog about my experiences with cancer (Cancer, you can suck it), have had a few memoir-style articles published, and even co-wrote a short film, bare, about my experience shaving my head before my first chemo. I never would have attempted any of this had cancer not forced me to leave veterinary school.

In one sentence, what words of wisdom would you pass on to another young woman who has just been diagnosed with breast cancer?

Feel everything that you need to feel, and remember that you don’t have to stay positive all the time. I felt an intense pressure to look on the bright side and remain upbeat throughout treatment. Because I could not, I felt like I was failing, and that only added to the enormous emotional burden that cancer dumped on me. No one wanted to hear how scared I was of dying, how profoundly sad I was, how angry I was. But in order to move through, and past, those feelings, I had to be given the space to feel them. They had to be given voice. So to any young woman recently diagnosed – it is ok to feel whatever it is that you are feeling. It will do you no good to suppress your feelings just to make other people comfortable. YOU are the priority, and your feelings are valid – whatever they may be!

Support throughout the cancer process is critical and I was extremely blessed in this department.

Family and Friends

From the moment I was diagnosed and shared the news, I was surrounded by love and support to an extent I’ve never know (or needed). I continue to be humbled by the number of people who truly cared about how I was doing and still care, several years later. Before my hysterectomy I was worried and asked mom, “What if nobody has prayers left for me?” My anesthetist for that surgery was an incredibly handsome angel – apparently, they do!
Prayers = answered. I chronicled my interaction with him. If you feel like laughing and swooning in equal measure, read Love in the OR at this link.

I knew that having a friend or family member with me at appointments and chemo would be necessary if I was going to make it through. After my first chemo, I was shocked by the immediacy of the symptoms. It hurt… bad. I told mom, “This is gonna kill me. I can’t do this seven more times. I’m gonna die.” She was so calm and steady when she replied, “You’re not going anywhere. You will not die.” I don’t know if deep down she doubted her words, but in that moment it was exactly what I needed to hear. I clung to her confidence and used it to battle my rising fear.

Even though chemo was brutal, I have many fond memories:

  • A friend sneaking a doughnut into my purse to celebrate finishing yet another blooddraw
  • Laughing during the many hours in the chemo chair (half of my chemo sessions were more than five hours… each!)
  • Watching the Flintstones with my grandmother while eating a cold cut sandwich, made just the same as when I was younger
  • Hearing stories of a little girl who prayed for me every single night and prayed to give my doctors strength, too
  • Getting Starbucks from my aunt at the best possible moments
  • Receiving tons of loving messages
  • All the hand holding (there was a lot)
  • Visits from fur friends, because who doesn’t love cuddling a Great Dane?
  Cuddling with Sadie, the Great Dane
Tim Hortons donuts

As with anything, balance is essential – it’s okay to say no if you don’t feel like seeing people on a particular day.

You aren’t obligated to receive guests and your loved ones wouldn’t want to impose either. For me, the weekends following chemo were “off” times and I would only allow family and close friends to visit. The pain was too much to handle and I decided to let go of the guilt. Being your authentic self is so important! And some days, your authentic self is exhausted, sore and needs space.

I think I summarized it best when a friend and I were cozy at my house after chemo. We were laughing about something as I braced myself for the nausea to set in and I turned to her and said, “You know – chemo and pain aside – this has been a really great day.”

The Medical Team

I know it sounds crazy, but I smile when I think about my medical team. Each one was a collaborative relationship that enhanced my knowledge of that step in the process. The warmth and support of both the staff and doctors was unexpected, but very welcome! To this day, I get hugs when I enter their offices for checkups.

The surgeon who performed my double mastectomy was also the doctor who told me I had cancer. Before my last appointment with him, I attempted to gather my thoughts so that I could express to him how much his expertise and positive demeanor meant to me. When the moment came I was overwhelmed. I teared up as he said he was proud of me and wished me “the best of everything good in this life.”  I shook his hand when I should have given him a hug. I’m thankful that it’s his kind face I see when I think back on the moment I was told the results of the biopsy that changed my life. I blogged about the visit, including a chance encounter with a woman waiting for her breast lump biopsy results. Read more at this link.

My plastic surgeon was also a perfect fit for me. We talked about such intimate things – breast size, texture, sex, femininity. We delved into the nitty gritty, but found humour in the most serious moments. I was in my surgical robes waiting to go in for my first mastectomy and reconstruction. It was the most terrified I’ve ever been in my life. (When I was on the operating table, I was shaking so hard that only my ankles, butt and shoulders touched the cold steel.) Before entering the operating room, she needed to do markups on my chest – where is the natural cleavage line? What kind of cleavage would I like? How high should the implant be? She said, “Okay let’s put an X on the left breast” (the one we were removing and replacing). I screamed out, “WAIT… unless X means ‘leave the breast alone.’” She froze and the small group of us stared wide eyed at each other. She replied, “Oh my god she could be right.” We all burst out laughing. Imagine mixing that up?! I can’t even.

The strongest connection I have is with my medical oncologist. I wasn’t exaggerating when I described chemo as brutal. Chemo, no matter the type, is poison. You poison your body over and over to shake up your cells and prevent cancer from forming in the future. In my case, I was young and thought that chemo wouldn’t be aggressive. It ended up the complete opposite – they went hard on me because I was young and they knew that I could take it. I couldn’t have made it through those seven treatments without my oncologist. He saw me at my lowest, most painful and horrible moments. There were appointments where I would try to negotiate ways around the pain (there weren’t any). There were days when I told him that my body couldn’t withstand many more rounds. I went to him with questions and topics for discussion and he always took the time to have an open dialogue. He never missed an opportunity to reassure or support me. I trusted him with my life – I still do – and that trust is what made all the difference. He made all the difference. The day I’m discharged from his care will be a very sad day indeed.

Support Yourself

Your health is just that – yours. Advocate for yourself! Ask questions and discuss the answers. Collaborating helps both doctors and patients alike. I detest pity – I refuse to give or receive it. Moments of doubt, fear, sadness, anger or regret? Sure. Pity? Never. To me, it’s a useless emotion.

Prior to beginning chemo, you must attend Chemotherapy Education.  If you think I tried getting out of it, you’re right.  I decided I wanted to attend on my own. Friends and family had been great about attending all my appointments, and I knew that I could handle this one solo. I walked in to the room and it was full of people – none of them near my age. As usual. I approached the woman with the clipboard and gave her my name. She replied by asking me who I was supporting. I gave her my name again and pointed to the chart. She asked me a second time who I was there to support. I said, myself, pointed to my name on the list and asked for my education package. I was irritated that she didn’t clue in sooner. Her face dropped and she handed over the file. I ended up sitting next to the only other person in the room who didn’t have anyone with them. She was a 50 something going through her second battle with cancer. We were a perfect, somewhat sarcastic, pair – she even took my question seriously when the topic of sex during chemo came up and I blurted out, “REALLY?!”

Having the support of friends, family and doctors is more helpful than words can describe. But perhaps even more important is showing up for yourself. Cancer patients or non-cancer patients – we all have moments in our lives where we’re forced to put up or shut up. Unfortunately, in the case of cancer patients, those moments are plentiful. I’ve felt my blood pour down my back and the intense sting of my skin being cauterized. I’ve tasted chemo and had a drain pulled from my body that was longer than my forearm. I’ve been on a surgical table alone and cold more times than I ever thought possible.

Was I in pain? Did I cry? Was I angry, resentful and terrified? Yes to all. But I showed up.

The point isn’t how deep you dig to find your strength, it’s that you dig at all that counts.

During chemo and the surgeries, supporting myself came mostly in the form of managing physical pain and making extremely difficult decisions. Now, self-care comes in the form of psychotherapy. After quite a bit of searching, I found a therapist who I click wonderfully with and my biweekly appointments with her have become a beautiful part of my self-love routine. She guides, reassures and teaches me even more ways to support myself.  #progress


Cassandra Umbriaco is a guest blogger for Rethink Breast Cancer. Since being diagnosed with stage two breast cancer at 28 years old, she combines her love of writing with a passion to help women affected by cancer. Check out her blog at cancerunder30.wordpress.com  

Cassandra loves travelling as much as she can, dresses that twirl, anything Disney and her little red Fiat – Luna. 

A glossary of the breast cancer terms you have questions about.


Adjuvant-therapy

Adjuvant therapy is a secondary method of treatment that is performed after the primary treatment method to lower the risk of the cancer returning. Examples include: chemotherapy and radiation therapy. 


Advanced Breast Cancer

Advanced breast cancer is another term used to describe metastatic breast cancer (see definition). It is not a different type of breast cancer. Rather, it is the most advanced stage (stage IV) of breast cancer.


Advanced Care Planning

Advanced care planning is the process of deciding ahead of time the kind of health and personal care you want in the future if you were to reach the point where you can no longer speak for yourself.


Axillary Lymph Node Dissection

Lymph nodes are small glands located in the underarm area. When someone’s lymph nodes are removed it’s called an axillary lymph node dissection. This surgery is usually combined with a mastectomy (see “mastectomy” definition). 


Benign

Benign is an adjective used to describe a tumour that is non-cancerous.

 


Biopsy

A biopsy is the removal of tissues and/or cells to be examined by a pathologist (see “pathology” definition). This is usually the only way to tell for certain if a lump in your breast is benign or cancerous.


BRCA genes

There are two BRCA genes: BRCA 1 and BRCA 2. Everyone has them and they protect us from getting breast and ovarian cancers. However, BRCA gene mutations can be inherited, which actually increase a person’s risk of developing these cancers, as well as prostate cancer in men. Women with BRCA gene mutations have a 40%-85% chance of developing breast cancer.


Breast Cancer

Breast cancer is cancer (the overproduction of cells) produced in the breast tissue. The majority of people diagnosed with breast cancer have random mutations arising during DNA replication in normal, noncancerous stem cells. 


Carcinoma

A carcinoma is a type of cancer that begins in skin cells or in the tissue lining organs like the liver or kidneys. 

 


CDK Inhibitors

A CDK (cyclin-dependent kinase) inhibitor is any chemical that inhibits the function of CDKs. They are used to treat cancers by preventing the over proliferation of cancer cells. They are also called AT7519M. Right now there are many breakthrough breast cancer CDK inhibitors coming to market.


Chemotherapy

Chemotherapy (or chemo for short) is a type of cancer treatment that that stops cancer cells from dividing or kills them altogether. Chemo has many forms, like: an injection, a pill, or infusion.


Clinical Trial

Clinical trials are a way to test new medical advancements (treatment, prevention, screening, diagnosis, etc.) in humans before making them readily available to all.  

 


DCIS

DCIS (ductal carcinoma in situ), occurs when abnormal cells are found in the lining of the breast duct, but have not spread to other parts of the breast tissue (non-invasive). 

 


De Novo

De Novo is a term, often associated with metastatic breast cancer (see definition), to describe a person’s first occurrence of cancer.

 


EBC (Early Breast Cancer)

EBC is breast cancer that is contained in the breast. It has been detected before it’s spread to the lymph nodes or the armpit. 

 


End of Life Care

End of life care is treatment that focuses on improving a patient’s quality life after their illness has become terminal and/or incurable. 

 


Estrogen Receptor Positive

Estrogen Receptor Positive (ER+) is used to describe breast cancer cells that may receive signals from the hormone estrogen to promote their growth. 


FEC

FEC is a chemotherapy treatment that combines three chemotherapy drugs: 5 fluorouracil, epirubicin, and cyclophosphamide – which help stop cancer cells from growing or kill them altogether. 

 


Genes

Genes hold a person’s DNA and are the basic function of hereditary. 

 


Genetic Counseling

Genetic counseling is a series of conversations between a trained health professional and a person who is concerned about their risk of inheriting a disease.


Germline testing

Germline testing (also known as genetic testing), usually occurs after genetic counseling to determine a persons familial risk of cancer. 

 


HER2

If you’re HER2-positive, your cancer cells make an excess amount of the HER2 protein. Originally made to control a breast cell’s growth, when the HER2 protein doesn’t work properly, breast cells can overproduce. This breast cancer tends to be aggressive, but there have been important breakthroughs in treatment.


High Risk

High risk refers to the certain factors that increase a person’s risk of developing breast cancer – more so than just the average person. They include: genetic, familial, and personal factors. 


Hormonal Therapy

Hormone Therapy (HT) uses drugs to block the production of estrogen and other female hormones that promote the growth of certain kinds of cancer cells after surgery.


Hospice

A program that gives special care to people who are near the end of life and have stopped treatment to cure or control their disease. Hospice offers physical, emotional, social, and spiritual support for patients and their families. The main goal of hospice care is to control pain and other symptoms of illness so patients can be as comfortable and alert as possible. It is usually given at home, but may also be given in a hospice center, hospital, or nursing home.


IDC

IDC (or invasive ductal carcinoma) is a type of breast cancer that starts in the milk ducts of the breast and has spread to surrounding breast tissues. It is the most common type of breast cancer.


ILC

ILC (or invasive lobular carcinoma) is a type of breast cancer that starts in the milk-producing lobules of the breast and has spread to surrounding breast tissue. It is the second most common type of breast cancer, next to IDC (invasive ductal carcinoma).


Immunotherapy

Immunotherapy is a form of cancer treatment the body’s immune system to fight cancer by boosting it with treatments and substances that improve the body’s natural response to illness. 


Invasive Breast Cancer

Breast cancer becomes invasive when it has moved from where it originally started to now affect surrounding normal tissues. The most common form is invasive ductal carcinoma (see definition).


Locally Advanced

Locally advanced is a term to describe cancer that has spread from its original location to surrounding tissue or lymph nodes. 

 


Lumpectomy

A lumpectomy is a breast cancer surgery that removes the cancer and part of the abnormal surrounding tissue, but not the entire breast. 

 


Lymphedema

Lymphedema is a common side effect of cancer treatment condition where the lymph nodes produce excess fluid, causing them to swell. 

 


Malignant

Malignant is an adjective used to describe a tumour that is cancerous. They can destroy and spread to surrounding tissues. 

 


Mammogram

A mammogram is a form of breast cancer screening where an x-ray is taken of the breast.

 

 


Mastectomy

A mastectomy is a surgery done to remove part or all of the breast that has cancer. 

 


Menopause

Menopause occurs when a woman stops having menstrual periods because her ovaries no longer produce hormones. Natural menopause usually occurs around the age of 50. Sometimes, a side effect of cancer treatment for young women is early menopause.


Metastasize

When cancer cells metastasize, they spread to other parts of the body.

 


Metastatic Breast Cancer

Metastatic breast cancer (MBC) is cancer that’s spread to other parts of the body. When breast cancer is found outside the breast, it is still made up of breast cancer cells and still considered breast cancer.


NED

NED (or “no evidence of disease”) is a term used when tests show no presence of cancer cells in someone who was previously being treated for cancer. NED has replaced the term remission because it is more accurate.


Neo-adjuvant Therapy

Neo-adjuvant therapy usually occurs before the primary cancer treatment (ie/ surgery). It includes chemotherapy, radiation therapy, and hormone therapy used to shrink the cancerous tumour. 


Neutropenia

Chemotherapy treatment can often kill non-cancerous cells in the body in addition to the cancerous ones. Neutropenia is often a side effect that occurs when the body’s white blood cell count is too low because of this. 


Oncologist

An oncologist is a doctor who specializes in diagnosing and treating cancer with chemotherapy or in some cases immunotherapy.

 


Oophorectomy

An oophorectomy is surgery to remove one or both of a woman’s ovaries. 

 


Palliative Care

Palliative care given specifically to people suffering from a life-long or life-threatening illness. This kind of care focuses on improving patients’ quality of life (see definition), focusing on all aspects of having an illness: physical, psychological, spiritual, etc.


Pathology

Pathology is the study of diseases by examining tissues under a microscope.

 


Peer Support

Peer support connects people living with cancer or people with other illnesses to others who have gone through it. Peer support is not based on psychiatric models and diagnostic criteria.


Progesterone

Progesterone is a hormone that plays a role in the menstrual cycle and pregnancy. If the breast cancer is Progesterone receptor-positive (PR+), that means its cells may receive signals from progesterone that promote their growth. 


Prognosis

A prognosis is typically given by a doctor. It indicates the likely course that a disease or illness will take, including the chances of it recurring.


QOL

Cancer treatments and clinical trials are often concerned with improving patients’ quality of life (QOL). This refers to their overall enjoyment of life and their wellbeing. 

 


Radiation Therapy

Radiation Therapy uses high-energy X-rays to destroy any cancer cells that may remain in the breast after surgery. This reduces the chance of recurrence.

 


Situ

Situ is used to describe a tumour, cancer, etc. which is confined to where it first started. In other words, it hasn’t spread. For example, ductal carcinoma in situ, is a breast cancer found in the milk ducts which has not spread to other tissues or parts of the body.


Stage

Stage is a term used to diagnose how advanced breast cancer is. It’s determined by tumour size, the number of lymph nodes affected, and whether it has spread to other tissues and/or parts of the body.


Survivorship

The state of being a survivor. Survivorship refers to a community of individuals who are living their best lives post-cancer and the resources and tools they can use to do so. 


Tamoxifen

Tamoxifen is a cancer drug used to treat and/or prevent certain types of breast cancer in women and men. It’s often used to treat ductal carcinoma in situ (see definition) or to prevent breast cancer in women who are high risk (see definition) for developing the disease.


Thriver

The term “thriver” is used in the metastatic breast cancer (MBC) community to differentiate from Survivor. Survivor can imply that cancer is cured and they are no longer living with the disease. Those with MBC live with their cancer but can be thriving.


Tumour

A tumour is a group of abnormal cells that forms when cells divide and multiply too quickly or don’t die when they should. Tumours can be benign (non-cancerous) or malignant (cancerous).


Ultrasound

An ultrasound is a breast cancer screening method that uses sound waves to examine the tissues. It tends to be a better screening method for young women under 40, who’s breast density prevents tissues from showing up properly on a mammogram.


Values (patient values)

Patient values refers to what patients value when it comes to cancer treatment and how they measure quality of life (see definition).

 


Washout Period

Washout period is a term used to describe the process where a patient in a clinical trial (see definition) is taken off a drug in order to give it time to leave their system.


 Xeloda

Xeloda is a cancer treatment often used for stage III colon cancer patients. However, it’s also often used to treat metastatic breast cancer (see definition) in women who’s situation hasn’t improved with the use of any other anti-cancer drugs. 


Young Women with Breast Cancer 

The Rethink definition of young refers to women at a specific stage of life when there are demands on family, friends, careers, education and fertility. Most of these women are pre-menopausal. Rethink believes that the advocacy work we do with young women helps to improve access and create change for all women.


Zoladex

Zoladex is a hormone therapy drug used to treat estrogen receptor-positive breast cancer (see definition) by halting the production of estrogen in the ovaries. 


 

for more terms and definitions, check out this online glossary.

When I began writing this blog post, I thought I could encompass most of the things I wanted to say about dating and breast cancer. It became apparent very quickly that more than one post is necessary. This entry will focus on the early days of dating after cancer.

I’ll admit that I’ve always hated dating. Girlfriends would ask, don’t you love the free meals? And all I could think was, I’d rather pay for my own steak and be with someone I know and am comfortable with. Cancer didn’t make me hate dating… it made me hate it more.

No Time To Date (The Zone)

I was 28 and single when I was diagnosed with stage two breast cancer. I looked upon people who were going through treatment and had partners with such envy. I thought they were lucky to have someone who would love and support them throughout their cancer “journey.” I’ve come to realize that this isn’t always the case – sometimes love and support don’t grow in times when you think they will. But perhaps that’s a blog for another day…

A friend tried to set me up with someone during chemo. I remember her saying, you deserve someone great. I was a bit irritated – I knew/know what I deserve. On a good day, dating is unappealing. On that day, sitting there bald and in pain, it wasn’t even an option. I was in the cancer fighting zone. Dating had no place there.

Months go by… seven brutally aggressive rounds of chemo come to an end. (yay!)
I start to thaw… (take an oncologist-approved trip to Disney World!)
Results are in and I’m a BRCA1 carrier. (well, shit)
Exactly one year goes by… mastectomy and reconstruction #2. (ouch)
I’m too scared to thaw… (so much to process)
Less than one year goes by… hysterectomy. (so. done.)

 

Even writing the timeline in point form exhausts me and it just shows the big picture. What I didn’t list are the plethora of tests and appointments associated with each phase. Everything listed above happened in less than two years. It doesn’t seem possible. I remember coming out of my hysterectomy and feeling completely done – with the pain, making difficult decisions and finding the silver lining in every situation.

Realizing You Haven’t Dated in a Long Time (The Thaw) 

As I emerged from the haze of cancer, I realized many of my friends were in relationships or getting married and I had missed out on what most people consider prime dating years. Just another thing cancer had taken from me – the luxury of time spent as a “normal” (almost) 30 something. I resented cancer and how it made me feel nervous and scared at the thought of having to go through unchartered dating territory on my own.

At first, I focused on how cancer made me different. I questioned how I would tell would-be boyfriends about my past and wondered how they would react. When I looked at the entire picture, dating was daunting and overwhelming.

I wallowed in self-pity for a short time. To pull myself out of it, I focused on moving forward one step at a time. Ironically, that’s exactly how I dealt with cancer treatment. I reclaimed my power and I continue to remind myself that my history is exactly that… mine. I’m free to share what I want, when I want. I made a silent promise to myself to never feel pressured to reveal my breast cancer story. After all, it’s only one part of the big picture that makes me who I am.

Dating Post-Cancer (The Shit… I mean, The Profile) 

As time went by and my mind and body healed, I figured I should get back into the dating game. I was a #survivor. I could handle dating – nothing would stop me! (Except rejection. I hate rejection.)

I knew I wouldn’t write about cancer in my online dating profile, although the thought did cross my mind. The idea of weeding out men that couldn’t handle what I’ve been through was appealing.

Side note: I don’t mean to imply that people who can’t “handle” dating someone who’s had cancer are weak or mean. Everyone has deal breakers and an image of how they see their future partner. But a man who sees my past as a burden or anything less than pure strength has no place in my heart.

All the pictures I selected for my profile were post-cancer, which meant I had short hair.  I always received the same questions – has your hair always been this short? (For a few years.) What made you cut it? (I felt like a change.)

I’ve never revealed my cancer experience before three dates with someone – it became my unwritten rule. I use that time to see if I feel enough of a connection to make me want to open up about it. Any time I have mentioned it, it never goes as planned. I develop a perfect script in my mind beforehand and practice pace and tone, but what comes out is nowhere near as composed or eloquent. My “big reveal” becomes a mini rant and normally goes something like this – “I have to tell you something I actually had breast cancer a few years ago stage two and like things are fine I’m good but I just didn’t know how to tell you so yeah if you have any questions let me know I had a few surgeries but my last major one was a few years ago so that’s nice.” I can’t help but laugh!

There has only been one time where someone online really pushed my buttons. In my profile, I list that I don’t want children. It’s more complicated than that – I can’t have children. Upon learning that I’m a BRCA1 gene carrier, I decided to have a complete hysterectomy. Someone messaged me and quickly asked “what’s with” me not wanting children. I dodged the question because, after only a few messages, my BRCA1 status is none of his business. He was aggressive and commented that I must be selfish. He wondered ”what type of person” wouldn’t aspire to build a family. There were many things wrong with his messages, aside from do you/don’t you want children. It enraged me that he believes that someone who doesn’t want children is self-centred. I wasn’t interested in an online debate, but I was tempted to explain the complexity of my situation to put him in his place. Minutes before I blocked his profile, I explained that he had no idea who I was and that, actually, I couldn’t have children. I hope he had the sense to reflect on his comments, but I doubt it.

I continued (i.e. trudged) on, but it wasn’t without hesitation. Like I said, I hate dating. And having to decide when and how to reveal this part of myself is something that doesn’t come quite as easily as I had hoped. But each interaction, no matter how fleeting, showed me a new part of myself. And for that alone I am truly grateful.

Tips for women going through this:

  • Don’t feel pressured to reveal that you had cancer (to anyone, potential bfs included).
  • Go with your gut – if you want to talk about it, talk about it. If not, don’t.
  • When discussing what you’ve been through, speak from your heart or the words won’t come out right.
  • When in doubt, remember – if they don’t honour you for what you’ve been through, they aren’t the one.
  • You’ve come this far and made it through so much. Don’t settle now.

Introducing Cassandra Umbriaco, a guest blogger for Rethink Breast Cancer. Since being diagnosed with stage two breast cancer at 28 years old, she combines her love of writing with a passion to help women affected by cancer. Check out her blog at cancerunder30.wordpress.com  

Cassandra loves travelling as much as she can, dresses that twirl, anything Disney and her little red Fiat – Luna. 

The Best Tips for Working from Home

Working from home is the dream for many office workers, but it isn’t always what it seems. Working from that home office brings a variety of new challenges with it. Overcoming these challenges is important to maintain the new at home status. Follow these tips from people successful at working from home to make sure you never see the inside of a permanent office again.

Continue the Commute

This seems silly, but consider what happened during that morning commute. You were able to think about your day and spend some time inside your own head. Taking away this part of the day might actually be harmful. Take some time before and after work to switch from home life to work. Go for a walk and think about your tasks for the day, then go back outside at the end of the day to unwind. This transition period is essential in separating work from home and vice versa.

Get That Office

The images of people working poolside from home just aren’t realistic. You need a dedicated office area for your work. This will tell your brain that it’s time to work and allow your psyche to switch to work mode. This is part of switching from home to work; stepping into that dedicated space is symbolic of stepping into work.

Maintain Your Relationships

If you start working for days without seeing another human being, make sure you change that. You need to maintain friendships and other relationships to balance yourself. No one survives on work alone. Make sure to get out at least once a week with some friends or other social group, such as a book club or local church. This also includes work-based relationships whether it’s networking, sub-contractors, or those who hire you. By keeping in touch and building these relationships, you will gain new and diverse work opportunities.

Manage Distractions

One of the biggest surprises for first-time stay at home workers is the number of distractions. Remember that you are still in your home, and you might think it’s only a minute spent changing the laundry or washing the dishes. Avoid this temptation. Reduce other distractions by sending the kids to a sitter, taking care of pets outside work hours, and ignoring the doorbell if it rings. This will help you maintain your productivity.

Maintain Strict Hours

The bane of working from home are the people who think you are now free to do whatever you want during the day. Make it clear that you still have work hours, and you are not free during these hours. Be strict. Do not answer personal calls during this time, and do not answer the door. This will help people learn that you will be devoted to work. If a person would not walk into an office downtown, then he or she must be expected to not walk into your home office.

…………………………………………………

Lucy Wyndham spent over a decade in finance as an advisor, but on starting a family, she decided to take a step back and pursue her love of writing and sharing ideas.

Name: Cassandra

Age: 32

Occupation: Communications Specialist

Age when diagnosed with breast cancer: 28

Breast cancer type: Triple Negative, BRCA 1

Breast cancer stage: 2

Treatment: Mastectomy and chemotherapy

Tell us a fun fact about yourself that has nothing to do with cancer.

I’m an unapologetic Disney nerd!  I’ve been to Disney World nearly 20 times, I own way too many Minnie ears (a must-have accessory when park hopping) and I considered making a Disney song the answer to the next question.

What’s your go-to pick-me-up song?

I don’t really have a go-to pick-me-up song.  I love all genres of music – anything with a catchy beat!

How did you discover your breast cancer?

My annual physical was coming up and I didn’t want to go – I felt healthy and didn’t see the need for a checkup.  I remember calling my family doctor’s office and saying, “So you’re just going to do a breast exam?”  Just a breast exam.

During the appointment, my doctor checked the right breast and there were no issues.  She moved to my left breast and her expression became serious immediately.  She said, “You don’t feel that?”  I had no idea what she was talking about.  She informed me that I had a very large lump in my left breast.

From there, everything moved quickly.  My family doctor and the doctor who later performed my biopsy (and double mastectomy) took my case very seriously and never brushed off urgency because I was so young.  The crazy thing was that my lump didn’t fit the usual description of a breast cancer lump.  I was calm and collected throughout the process because I was sure it wasn’t cancer.  I was so young.  It wasn’t possible.  Except it was.

What went through your head when you received your diagnosis?

I immediately said to the doctor, “But I’m only 28?”  I’m sure it sounded more like a question than a statement.  It was an out of body experience.  I was stunned.  I could hear my mom crying beside me and I thought, this can’t be.  How can this be?  Minutes later, when I came out of the initial haze, my first thought was, I don’t want to die.  My second thought was, I hate needles – how the hell am I going to get through this?

What’s the craziest thing someone said to you after being diagnosed with breast cancer?

I received a couple of questions and comments soon after surgery related to “enjoying” my new implant.  Even thinking back on those conversations makes me angry.  I want people to know that there is nothing enjoyable about a mastectomy.  Those of us who’ve had to go through it didn’t get a breast augmentation – we had our breasts removed and replaced (in reconstruction cases).  Awareness and sensitivity around that is very important to me and I don’t want other women to have to face similar comments.

In general, I wish people knew that sometimes the best thing to say is nothing at all.

Who or what is/was your biggest source of support throughout your experience with cancer?

Without a doubt, my family and friends.  Here’s an excerpt from a blog a wrote that sums it up:

November 11, 2016: 11.12.13. Hands down one of the worst days of my life.  Even still, I hate the feeling of leaves falling on me because they were falling in abundance as I walked into the doctor’s office for my biopsy results.

There are many words I could choose to focus on when thinking about this day – terror, sadness, anger, grief, shock.  Those words still cross my mind. But the one I decide to focus on – love.

(After my first mastectomy + reconstruction on November 27, 2013) I was being wheeled out of recovery and my family saw me and along they came (even though they weren’t immediately allowed to come with me).  Mom, Dad, Nonnie, Aunt Angie, Aunt Mary and Rusty – all in a row.  I was so drugged up and in serious pain, I could hardly move or open my eyes.  But I could hear them asking the nurses questions and calling my name.  I wasn’t able to show it, but I was cracking up.  What a hilarious group they made – slightly angering the nurses with their questions and comments that came in quick succession.  “How’s she doing?”  “Cassandra?”  “Sweetie, can you hear me?”  “Where is she going now?” “Is she okay?”  “Can we go with her?”  “When can we see her?”  “Cassandra?”

As I was wheeled down the hall, I thought – my God, I love these people.  They would follow me anywhere just so I wouldn’t be alone.  To make sure I knew that I was loved and safe.  And to make me laugh.

That kind of love has serious, life-altering power.  I was filled to the brim with it.  I inhaled it, held my breath and kept it there until April 11, 2014 – my last chemo.  For that long, brutal winter that love helped me survive.  I think it still does.

What is/was the most difficult part of being a young woman with breast cancer?

From the moment you’re diagnosed, it’s a rollercoaster.  You are bombarded with appointments and questions and fear and pain.  Your mind is on overdrive and so are your emotions.

Throughout treatment, I couldn’t find my niche.  I didn’t want anything to do with pink ribbons.  Traditional places for support didn’t appeal to me.  I wasn’t able to identify with any other cancer patients, in part because they weren’t (near) my age and also because I couldn’t see through the clutter of chemo to even want to seek out people like me.

Having a double mastectomy, chemotherapy and a hysterectomy within two years took its toll.  I often struggled when in a room with other “normal” young women who hadn’t gone through the many trials of breast cancer.  I felt deformed and questioned my worth.  But time has helped to heal those wounds.

What’s something unexpected you learned about yourself as a result of having breast cancer?

I knew I was tough, but I didn’t know I was this tough.  My capacity to handle physical pain is much more than I would have ever thought possible.

Having breast cancer also heightened what I already thought about beauty – that it’s so much more than our appearance and can be found in the darkest of times.

For instance, losing my hair was difficult.  To have some control over the loss, I shaved my head the night before my first chemo treatment.  A close friend came over to shave it and we expected there to be tears – it broke my heart to chop my long, luscious locks.  Slowly but surely the strands fell until only a buzz cut remained.  Mom was there, of course, and we chatted and laughed throughout the process and ended with a champagne toast.  I was terrified (with chemo looming), but I felt incredibly loved and supported.  And when I looked in the mirror at my new ‘do,’ I felt truly beautiful.

In one sentence, what words of wisdom would you pass on to another young woman who has just been diagnosed with breast cancer?

In this case, it’s difficult to limit words of wisdom to one sentence.  I would want to tell her that I know she’s the most terrified she’s been in her life.  That I know she’s wondering why this happened to her at this age.  That in no way is this fair or okay.  I would tell her to get ready for battle because that’s what this is – an all-out war.

But I would also tell her that she’s so very strong – much stronger than she realizes.  I have no doubt that she can do this.

There is a saying that I love and live by.  It’s simple, but encompasses so much.  My one sentence would be…

Have courage and be kind.

February 8 2010, 5:34 PM

My daughter Georgia has lately morphed into a holy terror. I don’t just mean your ordinary, run-of-the-mill-tantrum-having holy terror (she mastered that shtick long ago) I mean Holy Terror.  Caps and italics.

Because I am her mother and will therefore always, always, give her the benefit of the doubt (“Well, Officer, there are any number of ways that smoking gun could have gotten into her hands…”) I attribute this recent transformation to her feeling out of sorts due to a nasty cold she picked up at daycare, and not to the emergence of a sociopathic personality.

Daycare is just another word for petri dish.  It’s inevitable that she will pick something up every once in a while and bring it on home to mama, which is not exactly ideal when I’ve got low white blood cell counts, but what can you do?  She’s not well, she feels miserable, and she needs to stay home till she stops oozing her little germs all over the place.

Luckily, I’m not afraid of a few germs.  No, what scares me is the pint-sized screaming banshee of a shape-shifting Holy Terror in my house, all smiles and cuddles one minute, all Evil Personified the next.  We don’t even need to put the alarm on at night – if someone were foolish enough to break in, we could just unleash the vicious little wolf-child on them.  We could tell her they were after her dolls or something and I promise you the burglars would run screaming from this place, never ever to return.

But because I am made of more resilient stuff than the average burglar, I refuse to be terrorized. Or, if I am to be terrorized, I refuse to bend to her will or cow before her wrath.  Yes, we go through daily cycles of distraction, negotiation (she usually reneges), reconciliation and several varieties of Mexican Stand-Off.  The tantrums flare up continuously, with little warning, and no sooner has peace been restored than another geyser blows.  It’s totally exhausting. Still, there are bright moments in the day, none brighter that when it eventually ends and we can both retire, somehow still full of love for each other, to our separate no-fire zones.

I gripe on and on about this for a reason:

a serious layer of guilt was attached to watching my little girl transform into a murderous beast over the past few days, and it stemmed from a fear that she might be manifesting insecurities caused by my illness.

I know that when kids feel sick they become miserable and/or crazy beings.  I know this, and I’ve lived through it 50 times over with Georgia… But I still wondered if her behavior was some kind of “acting out” related to my cancer. Could it be that she has been picking up on vibes of fear and anger and insecurity from us?  Is it possible that her behavior is a result of the stress put upon her by my illness?  In other words, I asked the question that mothers have been asking since the dawn of motherhood:

Is this my fault???

It doesn’t help that people around me (childless people, cancerless people) nod their heads sagely and say things like, “She’s probably picking up on what’s going on…” Meaning “She’s probably picking up that you have cancer and it’s totally messing her up.”

It also doesn’t help that for some reason with this cold, Georgia has flatly refused to take any medicine.  And when I say flatly refused I mean blood-curdling screams, gigantic tear-drops, and kicking like a shotgun.  (Two adults working in perfect tandem toward the same end purpose are still no match for a Holy Terror in a rage.)

So, I began to wonder about this new medicine-phobia too:

was she refusing to take medicine because of some kind of association with my treatment?

The thing is, she’s never seen me take medicine of any kind.  Well she has, obviously, but she always referred to my oral chemo tablets as my “bite-amins,” and we never corrected her. (She continues to happily take her own vitamins.  Apparently she only finds conventional medicines repellent.)  She has never accompanied me to an appointment in the hospital, never witnessed me hooked up to an IV or even a blood pressure cuff, and never seen me actually sick “because of” treatment.

“Oh, but kids just know…” some will say, nodding sagely. Really?  Because if she has no experience of medicine as it relates to my cancer treatment, how can she be internalizing it?

Other mothers and grandmothers, both those in treatment and those who are cancer-free, assure me that it’s pretty common for kids to go through stages of refusing medicine. Some kids are fine with taking medicine, and some freak out completely.  And of course most little kids morph into grumpy little miseries when they’re feeling sick. (Heck, most grown men do too.)

So this time I have decided I will unburden myself of the guilt. If, when this cold passes, the Holy Terror doesn’t morph back into normal run-of-the-mill-tantrum-having Georgia, I’ll try to figure out if there’s a link. If the refusal to take medicine continues to be a problem, I’ll get to the bottom of it. But for now, I’m going to write it all off to Georgia just being a three-and-a-half-year-old with a cold.

It’s still confusing for me, figuring out what’s normal and what’s related to the cancer, especially where Georgia is concerned. I have a hard time knowing where to draw the line between respecting that children have powerful instincts and intuition, and accepting the too-easy default of blaming things on cancer. I think that cancer just feels so big, so monumentally scary to most adults, that they just can’t imagine it wouldn’t be to blame.  But to me that somehow smacks of letting cancer win, giving it too much credit.  And if I assume cancer is to blame, when do I start taking responsibility for my problems?

Inevitably cancer is going to cause us some headaches quite outside of its menace to my health. And if (when) it turns out sometimes that things are amiss with Georgia as a result of me having cancer, I realize it doesn’t mean I have to feel guilty about it.  

But I probably will – isn’t that just what mothers do?