Category: Survivor Stories

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!

My Friend Kathleen

.Reading time 8 minutes.

I met Kathleen through the Kick Ass Cancer Mamas Facebook group.  Here is her story…

Tell us your story / stats: 
I was 29, married 2 years and expecting our first child when I was diagnosed with stage 4 inflammatory breast cancer. It started as a red swollen breast and I ignored it thinking I was just getting ready to make milk. I found a lump months down the road which I had my OB check out and she sent me for an ultrasound immediately, which led to a needle guided biopsy and skin punch biopsy, then diagnosis. We did a baseline ultrasound on baby prior to chemo and found cancer in my liver as well. I had one chemo and then was induced. I did weekly chemo for 7 months before achieving no evidence of disease. I had my ovaries and breasts removed and will continue to get treatment for life, including daily pills, infusions and shots every 3 weeks, along with scans to check my heart due to potential damage from infusions. I have had no evidence of disease for over 3 years now.
C aside, tell us about yourself. What makes you, YOU!
I’ve always been a relentlessly positive person. I quit my job as a wedding cake designer in Seattle to spend more time with my son.
What went through your head when you were first diagnosed?
How unfair it was, getting to bring a little life into the world without getting to stick around to get to know who that kid would become.
What are some of your personal coping skills during difficult times?
I think I am still working on that… I try to talk about it but end up putting walls around the problem and not dealing with it. I try and breathe and stay in the moment, remember all the good.
Tell us about your support system. Or lack of. Where do you get your support from?
My family and friends. Some people came out of nowhere to be big supporters, other people dropped out of my life. I try not to take it personally and realize how hard it would be to be witness to the situation. I am super thankful for my husband, mom, and sister in laws. My son is obviously a huge motivation for me.
Many people are unaware that you can do chemotherapy while pregnant. Thoughts and personal experience?
I trusted in my oncologist. I remember the nurse administering it said she made my onc swear up and and down she wouldn’t be hurting my baby. My onc said it wouldn’t cross the placenta and it didn’t. I was bald when my son was born and he had a full head of hair, that was really reassuring to see.
What have you learned about yourself since dx?
That you don’t realize how strong you are, how much you can endure, until you don’t have a choice.
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 had no idea about stage 4/metastatic cancer. I thought breast cancer wasn’t a big deal anymore. Got a huge reality check when I was told metastatic was incurable. I also didn’t know there was a breast cancer without a lump.  I would urge everyone to be aware of any changes in their breasts and to always get it checked out.
Thoughts on the pink… 
I hate the pink washing that is still occurring. We need real awareness, awareness of the different forms, and stages, but more than that, we need research for metastatic cancer, it is the only breast cancer that kills. It kills when it spreads, yet it gets a tiny % of research funding. Wouldn’t you think the majority of research funds should go to the part that actually kills us?
Where are you at in life now?  Mentally, physically, emotionally…
Fairly healthy, I’m at a healthy weight and recently had reconstruction. I spend my days trying to make sure my son will grow up to be a good little person, toughest job in the world, being a mom, and that takes its toll, but I am working on taking good care of my mental health.
If you could send a message to yourself from 10 years ago… how would that go?
I would tell me to cut off my boobs! I don’t have genetics for cancer, just bad luck.
What are you passionate about? Is this different than what you were passionate about before dx?
I’m passionate about raising a good kid. Before C, I was passionate about making good cakes. I had a few in magazines, I was starting to feel like I had “made it” in the cake world, and then I decided it was a waste of time. I don’t know how much time I have in this world, I want to spend it with my family.
Do you have a favorite quote, mantra, phrase, or curse word?
“Hope always” and “time is precious, waste it wisely”
Whenever the day comes to travel to the “great beyond”, what do you hope people remember about you?
My smile and dedication to my family.
Would you like to share one of your shittiest moments/memories? The raw side of C.
I found out my cancer was “incurable” the Friday before my baby shower. I got to open up all these gifts thinking I wouldn’t be around to see the little man these things were for. I got a 9mo suit and wondered if that is what my son would wear to my funeral. The next day was our maternity photo shoot where we had to be all smiles when really we were devastated on the inside. When we got home from that we let ourselves break down. It was a very raw moment.
What’s the latest happenings in your life now?
Life is mostly good… I have a “Metastatic Mom” Facebook page but I don’t update it much since fortunately I haven’t had much to update! Clear scans every 4 months is what usually gets posted these days.
If people take away anything from your story, it would be…
Be aware of any changes in your body, be your own advocate, don’t waste your time on stupid shit.

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