Category: Uncategorized

My Friend Deanna

.Reading time 10 minutes.
I reached out to Deanna after seeing a comment of hers on an article shortly after I was diagnosed.  Here is her story…
Tell us your story / stats:
Diagnosed at 36 (2011), single workaholic, stage 3 triple negative bc.  I woke up early one morning to pulsing pain in my right breast, visible bump protruding from the breast (2.5” walnut sized tumor)
C aside, tell us about yourself. What makes you, YOU!
I’m figuring this out. I have learned I am a pretty calm & grounded individual . I need to be near water // helps me stay centered. Learning to fully trust & let go is my life’s goal.
What went through your head when you were first diagnosed?
Since I was a workaholic at the time, my only thought that jumped to my head was … when will I be back to work.
What are some of your personal coping skills during difficult times?
I use to recoil inwards and separate myself from others. Now: I try to connect with like minded people & be open to talking about my concerns. I like to hear of others that have experienced similar situations. Connection is key. It keeps me grounded and present.
Tell us about your support system. Or lack of.
I grew up in a pretty dysfunctional family. But as I have gotten older I have reconnected with my sisters & Dad. I have slowly learned the meaning of family. I also connected with various breast cancer not for profit organizations- Abreast In A Boat, InspireHealth (BC Canada), Callanish Society (BC Canada) and I have been able to create supportive relationships with many women who have walked a similar path.
What have you learned about yourself since dx?
I’m stronger than I give myself credit for. I know how to take care of myself now (physically, mentally & emotionally) I have amazing friends & family who love & value me. I am not my job. I have the ability to continue to grow & change. Letting go of stress has been invaluable.
What do you believe is a common misconception about being diagnosed? Or something that you’d like the general population to know about C.
I hate people who assume Or tell me I am a fighter. “Keep fighting” “stay strong” etc. Going through cancer was exhausting. I was scared to death. It’s after the treatments end — is when the hardest part of all of this happens. Looking back, the year of treatment was a breeze. I was diagnosed with PTSD 3 years after my diagnosis. I wasn’t set up to cope with what came after. Integrating back into a life that I no longer fit into. Also people tend to think it’s something specific that causes cancer. It isn’t… for me it was an accumulation of stresses: diet, relationships, poor sleep, family issues, lack of physical activity, workaholism – my stress rainbarrel was overflowing. My body just couldn’t balance anymore.
Thoughts on the pink…
I can’t stand pink ribbon campaigns. There is too much hypocrisy in the large organizations. Important Funds get diluted due to heavy administrative costs. Or it becomes a money making business for companies that don’t actually support BC initiatives. Candy bars, fried foods, cosmetics, plastic bottled water — these are the products we buy to raise breast cancer awareness? We just encourage ignorance under the gize of breast cancer awareness — oh I can go on. I’d prefer to donate to small local not for profit organizations that directly support those diagnosed (and their families) educating them on eating better, making better choices, active life style, stress management, mental emotional support & awareness InspireHealth & Callanish Society (both in BC Canada)
Where are you at in life now?  Mentally, physically, emotionally…
Physically – I’m in the best shape of my life. I coached/paddle with a breast cancer dragon boat team & also joined a competitive rec outrigger team. Mentally/Emotionally – it’s a work in progress, I have spent the last 5 years dealing with my life issues before cancer happened, two years of dedicated counseling, changing jobs, focusing on quality of life instead of a career, became an artist — that allows me the opportunity to slow down.
Do you have any lasting side effects- mental, physical, etc.?
Chemo Brain/ Brain fog was long lasting but went away when I went back to school to become a nutritionist. It is a fine line, for me, I became dependent on the story that I had chemo brain… that belief limited me. Once I was able to challenge this belief it eventually went away. I still get tired. I have stopped feeling guilty if I need to nap. However I am also the most active I’ve ever been:)
Have you noticed any lasting effects on your families and friends?
Many friends & family eat better now. Quite a few have started working out more— to allow them to enjoy their lives more (and keep up with their kids) Close friends are looking more honestly at their quality of life. Mid 30’s and onwards … it’s not about $ anymore.
If you could send a message to yourself from 10 years ago… how would that go?
Deanna, connect with life. You are not your job. You have the ability to slow down. Take time for yourself & just breathe. Your body & soul need to rest. Take care of them. Life goes by so quickly. Please learn to enjoy it.
What are you passionate about? Is this different than what you were passionate about before dx?
Paddling, good friends, eating good nutritious foods, art, being out on the water, finding ways to detox (mentally, emotionally & physically) & sleep. Yes this is very different – none of that mattered prior to my diagnosis.
Do you have any short term or long term goals that you are actively working towards.
I just bought my own canoe (that was on my list for a while), dabbling with the idea of moving to Vancouver Island — found a place I’d like to live already & making art more of a dominate presence in my life. Perhaps I could live off what I create.
Do you have a favorite quote, mantra, phrase, or curse word?
Only the present moment contains life . — enough said:)
Whenever the day comes to travel to the “great beyond”, what do you hope people remember about you?
That I cared for the people in my life, that I made significant changes to better support my life & I inspired connection & community.
Would you like to share one of your shittiest moments/memories? The raw side of C.
A technician said I was too young to have cancer (like I had made a mistake) … yeah, she was wrong and there is no such thing as too young. I hated the looks of pity I received from strangers and a few friends. Once I came back from treatments – I wasn’t able to fit inside my old work life & I felt so inadequate. I was “underperforming”, my whole life was work and I was failing at it.
What’s the latest happenings in your life now? 
My art is taking off & I am hoping to see how I can grow this. Exciting and so out of the blue. I had not sketched anything in over 20+ years & in 2017 I picked up old highschool supplies and haven’t looked back.
If people take away anything from your story, it would be…
Community & Connection is key. It helped me out of depression, it got me mentally & physically stronger, it allowed me to take life’s blinders off – liberating. It changed my life.

My Friend Jin

.Reading time 10 minutes.
I met Jin through the Kick Ass Cancer Mamas Facebook group.  Here is her story…
Tell us your story / stats: 
I was 37 years old and 36 weeks pregnant with my daughter when I was diagnosed with breast cancer. I was on top of the world–my husband and my careers were on point, we were financially stable, and ready to start a family. I randomly found a lump on my breast, which I had chalked up to a clogged duct. I made a mental note to show my OB at my 36 week check up. My OB wanted me to be seen by the breast specialist the next day, which should have clued me in to the fact that something was wrong but never in a million years did I suspect it might be cancer. I pushed it off for a few days, as I had some things I needed to wrap up at work before starting my maternity leave. On my very last day at work, before going on maternity leave, I was told I had cancer.
What went through your head when you were first diagnosed?
Fuck…I’m going to die and the child I’m about to bring into the world is going to grow up without her mother. Please, please, please let me live long enough for her to know who her mommy is.
Tell us about your support system. Or lack of. Where do you get your support from?
The thing about cancer is that it really helps weed out your friends. There were close friends who I thought would be there in my time of need who weren’t…and then there were acquaintances who came out of the woodwork to be there. One of cancer’s greatest blessings was it brought my family closer. I had never been close to my parents growing up…our relationship had always been rather strained. With my cancer diagnosis, I was able to let go of a lot of the resentment I held toward my parents and allow them to be there to support me and my family. I was incredibly lucky to have a strong network of support. My husband got into a motorcycle accident shortly after my cancer diagnosis and shattered his ankle, requiring two surgeries. My sisters and brother-in-law came up from LA and took care of us, and our daughter, as we both recovered from our surgeries and my parents watched my daughter while I went to chemotherapy. I also had some amazing friends who brought meals, provided distractions, and always offered up words of encouragement. I was also incredibly lucky to have a job that allowed me to take an extended leave without ever feeling like my job was in jeopardy.
Many people are unaware that you can do chemotherapy while pregnant. Thoughts and personal experience?
Given that I was diagnosed later in pregnancy, they opted to wait until I delivered to start treatment. My daughter was induced at 38 weeks. I was given the option of starting chemo right away or having surgery first. I opted to have surgery first so that I could nurse my baby. I was able to nurse her for 3 months before I started chemotherapy.
What do you believe is a common misconception about being diagnosed? Or something that you’d like the general population to know about C.
I didn’t share my diagnosis with very many people. In fact, I didn’t go “public” with my diagnosis until I was finished with treatment. I’m not entirely sure why but I was embarrassed…like I did something to deserve to get cancer and that having cancer made me weak. I honestly don’t know where that came from, as I have never viewed anyone having cancer as being weak. I’m not embarrassed about it now and am very open about my diagnosis and “journey.” Also, I think one of the biggest misconceptions for me was chemotherapy. I was terrified of chemo. I remember meeting with my oncology team and asking them what I needed to do to not have to go through chemo. Going through chemo was not a walk in the park but it also wasn’t as grim and horrendous as they make it out to be in the movies. I had some rough days but for the most part, I was able to take care of my child and function relatively normally while going through treatment.
Where are you at in life now? Mentally, physically, emotionally…
I am three years out from diagnosis. I still have days where I struggle mentally and emotionally but over the years, those days have become fewer and far between. I have worked in healthcare for over 15 years, mostly in the realm of nutrition and health education. Since returning to work after cancer, I have expanded my role to do more oncology focused work, managing a team of navigators who work with patients who have been diagnosed with cancer to help address barriers that may prevent them from receiving timely care. I have been able to use my personal experience with cancer to help guide and develop the program. Some days, it’s emotionally draining and overwhelming but overall, I have found this to be very cathartic and healing.
Do you have any lasting side effects- mental, physical, etc.?
Cancer takes many things from you, including your sense of naivete and innocence. While cancer no longer consumes every thought, it’s always there in the back of my mind, ready to pounce when I’m feeling most vulnerable. Physically, between chemo and all of my hormone suppression therapy drugs, I am arthritic, achy, and have chronic foot pain.
If you could send a message to yourself from 10 years ago… how would that go?
1) Enjoy that youthful body and long hair!! 2) Don’t sweat the small stuff. Time is precious and all those things that you thought would lead to the end of the world…you won’t remember any of them. 3) The guy that you are dating now will become your husband and the father to your children. One of his life goals is to race motorcycles. Encourage him to do it sooner…but if he doesn’t, DO NOT push him to pursue that dream right after you get your cancer diagnosis!
Would you like to share one of your shittiest moments/memories? The raw side of C.
I went through four rounds of Taxotere and Cytoxan. My third round was just before Christmas. Our family goes to Lake Tahoe every year for Christmas and I wasn’t about to let cancer take that away from me. The day after my infusion, we loaded up the car and made the trek to Tahoe. I don’t know if it was the cumulative effect of chemo but my body broke out in itchy hives and my throat felt like it was closing up. I wasn’t able to sleep because I was terrified I wouldn’t wake up. It was a pretty shitty way to spend Christmas…but feeling shitty in Tahoe always beats feeling shitty at home.
If people take away anything from your story, it would be…
No one is immune from cancer. I have no family history of cancer, nor did I have any genetic mutations. I have always eaten healthy and was vegetarian for 7 years. I exercised daily and practiced yoga regularly. There isn’t anything I did to bring cancer on. It was just shit luck and it happened. Cancer does not define me but how I have chosen to handle life with cancer does.

My Friend Emily G.

.Reading time 9 minutes.
I was connected with Emily through a mutual friend on Facebook.  Here is her story…
Tell us your story / stats: 
I was diagnosed in November 2017, three days after my son’s 2nd birthday and less than a week after my husband and my fifth wedding anniversary. We had, two months prior, left our New York City neighborhood of a decade and purchased a house 45 minutes north, in the suburbs. I was 32 years old, and we had been trying to get pregnant with a second baby. Obviously those plans were put on hold…..forever. My primary care doctor found my breast lump and insisted on imaging. I had been having a significant amount of pain in my back and hips over the past 18 months, and, in the course of my diagnosis, it was discovered that my breast cancer had metastasized to my bones.
C aside, tell us about yourself. What makes you, YOU!
I am an elder law attorney in NYC, but left my law practice after my son was born. My work focused primarily on adult guardianships, capacity issues, and public benefits. It has been incredible to see how much of those skills have translated into advocacy, education, and community-building following my diagnosis. I was also a college swimmer and completed the NYC Marathon in 2011, during my third year of law school. 
What went through your head when you were first diagnosed?
I’m not someone who is easily shocked. That said, it took me *MONTHS* to fully process my diagnosis. The moment that the radiologist first said “I think this is breast cancer” was surreal. I was both accepting of the diagnosis and unable to process it at the same time. A couple of weeks later, when I received my mets diagnosis (diagnosis of breast cancer having metastasized to my bones, making it stage IV, inoperable, and incurable), I think I screamed the most horrible scream imaginable. It was – and continues to be – the worst moment of my life.
What are some of your personal coping skills during difficult times?
I have to make space for myself to tackle the difficult things head-on. Often, in the evenings, I take a really hot shower and let my mind go to the darkest, scariest places possible, because I have found that ignoring them does me no good. I have also tried to be more mindful of my personal needs – taking time out for myself to recharge and not letting myself get too worn-down.
Tell us about your support system. Or lack of. Where do you get your support from?
When I was diagnosed, I had no local family and had just moved to a new town, so we had almost no in-person support. I had to cobble together a support system, but now, almost a year later, it’s amazing. We have friends we can lean on, an amazing preschool, and family who has travelled numerous times this year to stay with us during the toughest parts. I’ve also been really open about my diagnosis, which lends itself to a lot of support as well. One of the things I told people in the beginning (and still do) was to send me a card – I love getting greeting cards in the mail, and it allows me to have a solid stream of support from people who can’t necessarily be there in person. It also takes the burden off of me from having to respond/entertain people when I’m not up for it.
Many people are unaware that you can do chemotherapy while pregnant. Thoughts and personal experience?
None – I’ve never done chemo!
What have you learned about yourself since dx?
I’m stronger than I ever realized, and how much I can “walk through the fire…’cause where else can I turn” (Buffy the Vampire Slayer, anyone? Only me? OK.) In all seriousness, I have found focus for my life that I didn’t have before.
What do you believe is a common misconception about being diagnosed? Or something that you’d like the general population to know about C.
I found so frustrating the dichotomy between being a “warrior/survivor” and having a “death sentence.” While this rhetoric works for some people, it was tremendously damaging for me, and I needed to find a place in the language we use about cancer where I could continue to exist. I still struggle to identify that, but I would definitely ask that people be very mindful of using the term “survivor” in particular with metastatic folks, because it fails to adequetely capture our experiences as terminal/neverending/chronic cancer patients.
Thoughts on the pink… 
DONATE TO METAVIVOR! Let’s talk about breast cancer research funding for a bit. My blog is called “Beyond the Pink Ribbon” because I fully appreciate the purpose of the pink ribbon, but it currently has become ubiquitous, and hasn’t kept up with the changing dialogue about breast cancer. When we talk about breast cancer “awareness,” we need to unpack what that means: education and understanding about risk factors, about life with the disease, and about advocacy for the needs of those living with breast cancer. Fun fact: 30% of early stage diagnoses will have a metastatic recurrence at some point, but only 3-7% of funds raised for breast cancer goes toward METASTATIC research. METASTATIC BREAST CANCER IS RESPONSIBLE FOR 99% OF BREAST CANCER DEATHS AND IT KILLS 113 PEOPLE EACH DAY. We need more funds allocated to metastatic research, and we need to push for donations to organizations like Metavivor and The Cancer Couch Foundation, who fund ONLY metastatic research.
Where are you at in life now?  Mentally, physically, emotionally…
At home, in my recliner, with a cat on my lap. In all seriousness, though, I am coming up on the year anniversary of my diagnosis with tremendously mixed feelings. Some metsters never make it to that mark, but it’s also very frightening because I’m reaching the point where my health becomes more of a wild card. We don’t know if/when my treatment might fail, and how that will look. It’s very scary.
Do you have any lasting side effects- mental, physical, etc.?
I’ll be in treatment for the rest of my life. I had my ovaries removed, so I’m in menopause and can never have another child. I have joint pain from the aromatase inhibitor treatment. My metabolism is shot. It’s not pretty.
Do you have any short term or long term goals that you are actively working towards?
I’m launching a podcast! It’s called “the Intersection of Cancer and Life” that is an interview format show between myself and others who are living with cancer to unpack real life with cancer.
What’s the latest happenings in your life now? 
My blog: Beyond the Pink Ribbon (emilyrgarnett.com) and my podcast, which will be available on iTunes, spotify, and Google Podcasts on October 11th!