City: Fall River, NS
What was your diagnosis? Stage 3b breast cancer TN (Triple negative) (September 2010), Stage 4 breast cancer (May 2015).
What year was it? What was your age at the time? 2010, 29-years-old; 2015, 34-years-old.
What is a top item on your life to do list?
Have an art gallery showing.
What are your hobbies?
Art (painting/drawing/sculpting/etc.), writing, gaming.
What was your life like before your diagnosis?
I was just trying to figure out being a new mom. My hubby and I had been married for year, and I had been in a car accident the year before, leaving me with permanent injuries.
The second time around, I was in the middle of my second reconstruction attempt. I was pregnant with our third child, my husband was sailing a lot for his job, and I was still trying to balance my injuries from the 2008 accident.
How did you find out you were sick? What led to your diagnosis?
When my son was five-months-old, I found a golf ball-sized lump in my breast that was very sore. My doctor was quite concerned and requested a mammogram. The hospital took several months before getting me a date; I went there in March and wasn’t booked until August. The mammogram and ultrasound looked suspicious (9cm x 9cm mass), so they did a biopsy. It turned out to be cancer, and when I started chemo two weeks later, the mass had grown to 12cm x 12 cm and the lymphnodes were involved.
Second time around, I was 40 weeks pregnant with our third kid. I had been having pain in my chest between the reconstructed breasts, but thought it was because of hormones loosening ligaments/the newly constructed breasts. I rubbed the area that Friday morning and discovered there was a lump protruding from my sternum.
After giving myself ten minutes of hyper-panicking, I dug out the doctor’s phone number (I had his home contact because I was due to have a baby any moment). He immediately called the local emergency centre and got them to take me in for an ultrasound examination with their radiation specialist. I called my husband out of work and he dropped everything to come home. The ultrasound showed the mass was coming out of the bone, no doubt, but they could not do more testing until after my son was born.
After the long weekend, he was still sitting pretty in my womb, so they started evicting him that Tuesday night; he was born Wednesday morning. The CT scan and bone scan on Thursday revealed that I had a tumour taking over my ribs and a smaller tumour in my right lung.
What were your first thoughts when diagnosed?
Panic. I had a son that wasn’t even a year old, newly married, not even 30 yet, and I had a large tumour trying to spread.
Second diagnosis: I was horrified. Total and complete panic. I’m feeling a lump in my chest as I look at my daughter and son and feel my baby kicking in belly. I knew that once breast cancer becomes stage 4, you are never free of cancer.
In which hospitals were you treated?
VG (Halifax Infirmary, Victoria General) and Dickson (Cancer Centre of Halifax). Reconstruction at QEII (Halifax Infirmary, QEII site).
What did your treatment consist of?
First time around went like this:
Chemo first! It was trying to spread already because the hospital took so long to get me in for diagnosis. I was given a six-round treatment of FEC-D (Fluorouracil, Epirubicin, Cyclophosphamide, and Docetaxel aka Taxotere). During the Docetaxel regime, my white blood cell counts dropped a lot and I ended up in the hospital for a week because of an “infection somewhere,” causing complications. I had to take Neulasta to help my white blood cell count. I lost all my hair. Each time I had chemo, my parents and my middle sister helped with my son until the weekend when my husband would be home from work and able to care for us. It would take me about a week to feel close to normal.
Next I had found out that I would be having a mastectomy even though the tumour had been responding (shrinking) to the chemo. I requested immediate reconstruction, but they said they could not arrange it. I was to be put on a list for meeting with a plastic surgeon later. Hooray moment was when the pathology revealed that the tumour had shrunk to 4cm x 3cm x 2cm, but there was only 1 cm of live tumour cells. Also 0/10 lymphnodes had any signs of cancer.
I had 25 rounds of radiation.
Second time around:
Ten rounds of radiation to bring down the protruding lump in the sternum/attack the bone metastases.
Six rounds of chemo (Abraxene, cousin of Docetaxel). It made me lose my hair, again, and it knocked me out physically more than the Docetaxel did, to my recollection.
Currently on Xeloda, chemo pills. They tire me out. Regime is two weeks of taking four horse-sized pills twice a day, one week off. So far, it’s working, and there is no evidence of the lung tumour on the last CT scan.
One of the hardest things was losing my hair. I loved having long hair, and it was long. It was to my belt the first time I was diagnosed, and it was just passing the bra line the second time. As much as I know “it’s just hair.” it was me losing something. It might never come back, it might come back but not the same, it’s something that can mask the fact that you’re sick, and it was gone. I hate it when people try to soothe you by saying “it’s just hair” or “it’ll grow back.” Rawr.
Thankfully, they prescribed so many drugs that I didn’t really get sick that bad during chemo, but I was always so tired. Dealing with cancer is mentally and physically draining: treatments, fears, realities.
Radiation was pretty tame for me. I had been wearing sports/shelf bras to help with the remaining breast, but the elastic started to rub the skin raw so I had to forgo them for a while.
Speaking of bras, while having one breast, I honestly did not give a [email protected]$k about how it looked since I didn’t wear a prosthesis. I was the Uniboob, and if something looked off and it made someone else uncomfortable, tough. Prosthetics are generally bulky, hot, annoying buggers, and I wasn’t about to sacrifice my comfort to make you feel better about how you viewed me. On occasion, I might feel like not having looks for the day (normally when I was already mentally low from other factors), and would wear the slip-in prosthetic that came with a mastectomy bra, but 99 per cent of the time, I was flat on the right and DD on the left.
I’m constantly scared. I am limited already because of my back/shoulder injuries and stacking cancer on top of that is infuriating. I can’t be as active with my children, I have to ask for help a lot (that is as annoying as hell), and I have to accept that I lost the majority of my independence. I fear that I won’t see my children grow, I fear that my husband will be a widower before he’s 35, I fear that my parents will bury their youngest daughter. But, I take it one hour at a time, one afternoon at a time, one day at a time, one week at a time. Do want you can; ask for help instead of suffering.
What is your current medical status?
Stage 4 breast cancer, lung and rib mets.
Life after with cancer:
How is life different for you now post diagnosis?
There is no after cancer. There’s life before cancer and life with cancer. Some lucky people get to live the life with cancer part with no tumours and no signs of recurrences, and others will live it with cancer slowly trying to get the upper hand.
Mentally, I’m drained a lot. I’m emotionally at war with myself daily. Socially, I am very short-fused with people who think we caused our cancer and people that spew off half truths or blatant lies, thinking they know more about our cancer than either ourselves or our specialists. Myths and falsities are spread so fast because of the social media at our fingertips and they think they’re helping when they are actually hurting people.
What is the toughest part about having cancer as a young adult?
Dealing with the stereotypes:
You’re too young to have cancer. My doctor had to call weekly to get the hospital to get me in for a mammogram because I was under 30.
You must smoke/do drugs? Some figure you have to have done something bad/illegal to have caused your body to create cancer.
You shouldn’t have eaten meat/non-organic/dairy/etc. Again, some think that you caused your own cancer because of your personal choices/upbringing.
Another issue is trying to deal with a lot of the things older adults and children don’t need to when they have cancer: trying to start your marriage, raising babies/toddlers/young children, trying to find your place in society.
What really helps you to keep going?
My husband. He lets me sleep in and watches all three kids even though he barely slept himself. He brings me tea or cheesecake when he knows I’m low. He brings the kids in to help me when it’s hard to get out of bed so I hear a chorus of “MAMA” or “MOMMY” to help give me strength.
What keeps you busy during treatment?
I draw when I can. My hubby and I like playing games (RPG, RTS, card games), which also lets us connect outside of cancer. And we both like movies, so we watch those together when possible.
How are you connected with Young Adult Cancer Canada? How did it happen?
While going through chemo in 2010/2011, a friend told me about her friend that had been diagnosed and found this organization that has retreats and conferences for young adults in Canada with cancer. That was YACC. I applied for Retreat Yourself East 2011 in NL. After that, I attended three Survivor Conferences, became an active member of the digital community, and have been a guest on the Big Cancer Hook-up.
Do you feel isolated from your peers since your diagnosis? If so, how does that affect you?
I feel slightly isolated from my friends that don’t have cancer; it’s something they cannot relate to, no matter how much they try. But, they do try, and that means the world to me.
I still have a hard time with how far apart my friends through YACC are from me. Most of them live in other provinces, so I only get to see them at YACC events. It makes it hard. You start feeling like you’re pestering your local non-cancer friends with the details of your illness, and they want to support you, but just cannot relate and it makes a slight rift. Having “cancer friends” gives you a feeling of relief. They get it, they can understand the mixture of emotions you feel, and even if they have a different diagnosis or different stage, they can relate to the feelings of loss, of no control, of darkness, and of rage.
Did anyone talk to you about fertility options before treatment? If so, how did that affect your decisions? If not, what do you wish you had known?
HAHAHAHA, no. They did not talk about fertility treatments, and when I finally found out that most women going through my original treatments get kicked into menopause, I asked why they didn’t talk to me about it. They said that since I already had a son, they didn’t see it as a priority. I was livid. I had wanted more children and now I was being told I would probably never be able to again. It wasn’t my choice, and it was being enforced without even consulting myself or my husband. I was extremely annoyed.
Has your cancer diagnosis affected any of the relationships in your life? If so, how, and how are you managing them?
I lost some friends. They suddenly stopped talking to me, stopped calling, messaging, or ignored me if they saw me. One person turned evil on me and started blaming me for all her issues. I have no idea why; it happened a month after my diagnosis.
Other friends stepped up to bat, making meals to help out, watching the kids, helping make sure I got to appointments, especially if my husband was sailing. You’ll be surprised in times of crisis who steps up and who cowers away to the shadows.
My hubby and I remain completely supportive of each other. He’s tried his best to make every appointment, chemo, surgery, everything. If he’s home, he’s making sure that the kids and I are cared for to the fullest.
How has your diagnosis affected the way you parent? Do you have any tips for other parents on talking to their children?
My first diagnosis, my son wasn’t even one-year-old yet. There wasn’t much for talking with him then, but I had to hand him over a lot so I could deal with my treatments/surgeries. As he grew and I had my reconstruction surgeries, he started to call my breasts and area my “owies,” mostly due to the fact that while playing or reading to him, he would occasionally hit or press on the area while it was tender, and I’d say “ow, don’t do that, it hurts Mama.”
My daughter started noticing her body, and when she saw her nipples, she cried out “OH NO!” pointing to them, saying they must be scratches from the cats. We had to explain to her that mama doesn’t have nipples, but most people do. Her father and brother do, and they’re okay to have.
With the second diagnosis, my oldest is able to understand a lot more. I don’t hide any of it from him. He knows I have cancer, he knows the treatments make me sore and/or tired. He knows that right now the treatments are working and we’re hoping it stays that way. When I said I was going to lose my hair, he offered to shave with me for Shave for the Brave and raise funds for YACC. He knew it was important to me, and he wanted to participate with me.
My biggest piece of advice would be to tell the truth; don’t sugarcoat it. They understand a lot more than you realize.
How has your cancer experience affected your body image, and your relationship to your body?
Well I went from having extremely long hair and being quite chesty to no hair, half a flat chest, and scarred. My eyes looked sunken, my skin was even more pale than usual, I didn’t look like me at all. Over time, between the diagnoses, I had started to look more like my old self. I had reconstruction for my chest (failed the first time, looking good so far for the second attempt), my hair had time to grow out, I had started finally losing weight, and then I was diagnosed again after a pregnancy.
My body is nothing like I remember. I sometimes don’t recognize the person staring back in the mirror. There’s scars on that person’s chest and back. There’s barely any hair on my scalp, but it is coming back. My eyelashes and eyebrows are returning. The hair is slowly returning all over my body. I actually got to shave my legs for the first time in six months! Small things, things that were routine help with the way you see yourself.
If I get to style my hair somewhat, if I get to put on mascara when we go out somewhere nice, if I can wonder if I should shave or leave the forest be, if I can put a shirt on and not have it look more faded on the side that my breast would rub against and the other side look new since it’s flat. All those things help you feel more human, more like yourself before cancer hit you like a ton of bricks.
Now, all that said, I am the one picking at myself. I have not once heard a single negative thing from my husband. He didn’t care if I got reconstruction or not. He didn’t care if I was flat chested on one side and didn’t wear a prosthesis. He always tells me I’m beautiful, even when I know I look like Death Destroyer of Worlds. He supports me and still snuggles up to me, hugs me, and kisses me. Yes, I’m bragging. He’s mine; you can’t have him.
Having that kind of support has helped. Yes, I’ve cried in the tub. I’ve broken down when the kids are asleep and I’m home alone. This is tough crap to deal with. I never signed up for any of this, and the physical reminders are constant reminders. I can’t look at myself and not see something cancer hasn’t affected. But I deal. I continue to get up, get dressed, and give a middle finger to anyone that doesn’t like the way I look. They get two middle fingers if I’m feeling especially happy.
I have a friend who I met in the hospital when the first reconstruction failed. She has Crohn’s disease and also has many scars. We were talking about how it affects the way you see yourself. She had to leave for surgery while I was told I could finally leave the hospital. I left her a quick sketch that I hoped would help her, and she says she loves it, even posted it as her cover photo on Facebook. It read: “My scars don’t define me, I define my scars.” Define your scars, don’t let them take over.
What are some lifestyle changes you’ve made since your diagnosis?
Haven’t really made many lifestyle changes. Still try to exercise as my body lets me. I try to eat healthy; sometimes it’s McDonald’s for supper, for ease of life or a treat for the kids. I drink alcohol, but it’s on occasion, and as long as my prescriptions/treatments permit. I try to relax, mostly by drawing, but that is few and far between for many reasons. People need to remember that you need to enjoy life, but not burn yourself out. Moderation for many things, consistency for others.
I guess the only thing that might have changed is I try to let stuff go more. I don’t reply to a lot of things on Facebook just because I’m not dealing with the drama the other person is spreading. I pick my fights with a lot more scrutiny.
Resources and recommendations:
What would you add to a treatment-day playlist?
“Goodbye” by Gravity Kills
Jive Bunny (all of it)
“Call Me When You’re Sober” by Evanescence
“Come With Me Now” by Kongos
“Come and Get Your Love” by Redbone
“Hooked On A Feeling” by Blue Swede
“This Ain’t A Scene (It’s An Arms Race)” by Fallout Boy
“Legend Of A Cowgirl” by Imani Coppola
“Shake Tramp” by Mariana’s Trench
Which books/movies/podcasts/TV shows/etc. would you recommend?
R.A. Salvatore, anything by him, but especially his books about Drizzt Do’Urden.
Guardians of the Galaxy (granted I fast forward the first few minutes every time)
Any Ironman movie
Webcomics: (both Canadian, might I add)
LFG (Looking for Group)
What are your favourite blogs and websites for passing the time?
I’m on Facebook to keep up with friends/news, and I like to read webcomics (see above). Just recently became a fellow twithead. Yeah Twitter, you finally got me.
Have you participated in any other retreats, conferences, programs, or support groups you’d like your cancer peers to know about?
There is a conference every year in Tatamagouche, NS for breast cancer survivors. It’s actually for the Maritimes, not just NS. The Truro hospital helps with setting it up, it’s been going on for 20 years.
In Halifax area, there’s only one support group for breast cancer survivors, Pink Panthers. It’s held by BCANS (Breast Cancer Action Nova Scotia) and is at their office in Bedford, NS.
Stay in touch:
What would you like to say to other young adults dealing with cancer who are reading this profile?
Express yourself, be yourself, advocate for yourself. Only you know if you are happy with something, and if not, make sure others are aware Make sure you let doctors know if you’re not 100 per cent on their treatment, or ask their reasons for not giving you a treatment. Make them explain it to you; you have the right to understand your regime.
As to friends and family: some will give up on you. It’s not your fault, and honestly, it isn’t just because you have cancer, either. If something like a friendship or family relationship “suddenly” crashes or burns, there was issues before, they were just looking for an excuse.
No matter what, you deserve to live your life.
Are you interested in helping others facing cancer challenges? If so please let us know how you can be contacted.
Yes! Email me!
If you are interested in emailing Julie, please contact us at [email protected] and we’ll pass along the message.
cancerandotherhiccups.blogspot.ca Granted, I don’t update as much as I should.