Friend to Friend: Navigating Life with Terminal Cancer

I’m excited to share with you Emily.  We have become friends over the internet and I look up to her so much.  She is incredible and I’m grateful for her to share her story with you today.  

Hello friends – I’m looking forward to sharing a personal experience of mine with you all. I hope that you’ll find some useful information here, and if you or someone close to you is going through a similar experience, please know that you are welcome to reach out to me (my email is [email protected]).

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I became a mother to my amazing son in November of 2017. I had a fairly easy pregnancy and birth, but began experiencing some significant mid-back pain around 8 weeks or so after giving birth. My son was a pretty big baby and was only calm when I carried him or wore him in a carrier, and was still also nursing around the clock, so my husband and I just assumed that the back pain was due to these factors. As he got older, my back pain got worse, and each doctor I visited said the same things: you’re a new mom, you’re nursing and not getting a lot of rest, you have a big, active baby, your core is weak, you’re carrying some extra baby weight. I was so frustrated, but also, I was in a lot of pain.

Fast forward to nearly two years later – we had just moved out of our tiny NYC apartment and purchased our first home in the suburbs. My back pain was getting increasingly worse, but again, we assumed it was related to the move and chasing after an almost two-year-old. My pain was tremendously uncomfortable, but mostly manageable, and I had sort of accepted it as a part of my life that I would deal with from that point on. That is, until one morning I woke up, and it was no longer manageable. I had stabbing pains in my ribs, my back was spasming out of control, and my hips were so painfully stiff that I could barely sit down. Things were so bad that I couldn’t sit long enough to drive the car, because it was so painful. At that moment, I knew that something was very wrong, because my body felt like it was falling apart.

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I immediately called my primary care doctor and booked an appointment. At that point, we had also started trying for a second baby, so I knew that whatever was going on needed to be addressed before I could become pregnant and have as healthy of a pregnancy as possible. My primary care doctor listened as I described my symptoms, and then ordered a large panel of blood tests. She then performed a physical exam. As she was going through the exam, she mentioned that she was going to do a breast exam. Nearly immediately after mentioning this, she paused, and said that she had found a lump in my breast. She wasn’t sure what it could be, possibly be a cyst as a result of breastfeeding, but she wanted me to get it checked out.

I wasn’t sure what to think about this information. I went home, and diligently made an appointment for a breast ultrasound, not expecting anything but normal results. My husband and son went with me to the appointment – we had planned to drop my husband off at his office afterward and I had registered us for a free toddler music class in the area. Less than a week ago, we had celebrated our fifth wedding anniversary, and our son had turned two earlier that week as well. We talked the whole car ride about all of the celebrations over the past few days, and how we hoped to cap off the celebrations with a positive pregnancy test in the next few weeks.

As the ultrasound tech moved the wand around my breast, I chatted with her and mentioned that I hoped that the next time I had an ultrasound, we would get to see a baby. She smiled thinly, and then stopped the exam. “I need to get the radiologist.” She said, and left the room abruptly. My brain didn’t fully register what was going on, even as the radiologist came back in and explained that she didn’t like the images that were coming up, and was sending me immediately for a mammogram. I went out into the waiting room and told my husband to take our little boy out for a walk, that they wanted to do more tests, and it would take a little longer than we had previously expected. Neither of us knew what was coming for us that day, or in the days following. We didn’t know how fully our worlds would be rocked, how much our relationship would be tested, how we were about to undergo one of the most frightening experiences of our lives.

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After the mammogram, the tech led me to the radiologist’s office, and offered to get my husband to be with me. Still not fully comprehending, I declined, but she said she was going to get him anyway. I sat in the chair as the radiologist started to talk at me with words that I couldn’t understand: irregular, calcifications, spiculated mass. Finally, I clawed my way out of my fog of denial and misunderstanding and said, I still don’t understand – do I have breast cancer?

Yes, she said. It’s breast cancer. As she was talking about the next steps: a biopsy, meeting with the breast surgeon and social worker, and so on, my husband walked in. I collapsed in his arms, weeping. I have breast cancer, I said to him, in between sobs. The rest of the day went by in a horrible blur, and that horrible blur became my new normal as I broke the news to family and friends, and we began to talk about the next few weeks and months: a bilateral mastectomy, chemotherapy, and radiation, as well as years of hormone therapy to follow. Although we hadn’t realized it yet, the worst news was still to come.

At the urging of my primary care doctor and several family friends, I sought a second opinion at a large, nationally-ranked cancer center. At the time of my diagnosis, the radiologist, oncologist,  and breast surgeon reassured me that my cancer remained localized, that I would be “fine.” However, when my husband and I met with the new oncologist, she reviewed my pathology and scans and saw a different story. She was concerned with some spots showing up on my sternum and immediately sent me for a more through scan, to better understand what the sternum spots could be. After the scan, she called almost immediately with the results: the spots lit up significantly, indicating that my cancer was not localized to my breast, as we had thought, but had spread – metastasized – beyond my breast, through my lymph nodes, and had invaded my bones as well. My diagnosis was now stage IV breast cancer. This is end-stage cancer, and the five year survival rate for metastatic breast cancer hovers around 25-30%.

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I don’t think I have to tell you how devastating this diagnosis has been. Shortly after these results came through, I started hormonal therapy – my type of breast cancer is driven by estrogen, so the best way to treat it is to remove all estrogen from my body. I was put into chemical menopause, and later, underwent a total hysterectomy, rendering me completely infertile. Our family can never have another child – we were unable to do any fertility preservation, are not currently eligible to adopt, and are choosing to focus our energy on the child we have, who is the light of our lives. My first line of therapy did not include any breast surgery or chemotherapy, but a new type of targeted therapy – two pills a day – and I avoided chemo, hair loss, infusions, and all of the challenges that come with traditional chemo. All of these changes were tremendously hard on my body, and caused a tremendous amount of joint pain, aches, and weight gain. I found myself living in the body of a much older woman, and I was only 32 years old. 

The first line of treatment was tremendously effective for almost a year, but in December of 2018, we discovered that it was no longer working. I then elected to switch courses of treatment and enroll in a clinical trial, testing out a drug that has not even come onto the market yet. I am only a few weeks in, but so far, my side effects have been minimal.

I have chosen to be very outspoken about my diagnosis, my treatment, and all aspects of life with cancer, because I want those dealing with similar situations to know that they are not alone. I began a blog, called Beyond the Pink Ribbon (www.emilyrgarnett.com) which provides information about my diagnosis, treatment, education about breast cancer, and advocates for better funding and awareness for metastatic breast cancer, particularly in younger women. I also started a podcast, called The Intersection of Cancer and Life, that discusses many of the tougher subjects about life with cancer that we all want to know, but don’t know how to approach. Lastly, I am starting a nonprofit geared toward assisting families with young children in which a parent was diagnosed with metastatic cancer. As an elder-law attorney by training, I have found that so many of my skills can be put to use in this arena. Every day, I try to use my experiences and information I have gathered to create positive, long-lasting benefits for others, and to create some good from this horrible diagnosis. 

I often get asked what people can do for someone else in a similar situation. If you know someone who is dealing with a cancer diagnosis, talk to them. Get to know their specific challenges and needs, and help fill in the gaps. If they are struggling to get healthy meals on the table, ask to set up a meal train for them. If they are dealing with child care issues, offer days and times in which they can consistently drop off their little ones with you, or coordinate child care for them in another way (but whatever you do, don’t flake out on this, because one of the most difficult things I dealt with was inconsistent child care). If they need help cleaning, offer to pay for a cleaning service, or set up a GoFundMe to help offset these costs. If nothing else, you can always send a greeting card letting them know you’re thinking of them. Don’t be afraid to say the wrong thing, because saying nothing is often much worse than asking about their treatment. In my experience, cancer took over my life for a long time (ok, it still mostly does), and often I have very little else to talk about. In that case, I welcomed people to ask about my diagnosis and treatment. It was so helpful to have someone interested in what was going on in my life, and I found it very touching that people were willing to educate themselves about my illness. Many times, my friends and family were able to ask more nuanced questions later on because they had taken the time to better understand what I was going through. 

For those of you who are dealing with a cancer diagnosis, or a similarly tumultuous health challenge, I am not going to tell you that it will be ok, or things will get better. What I can say is that you are not alone, although there are days where it can feel almost impossible to even get out of bed. You are resilient and, most importantly, you are still here, now. Gather your resources and utilize them. It may feel uncomfortable at first, but eventually you will start to process and live in your new normal. You will grieve your losses – you have lost something significant and it’s a heartbreaking thing to wrap your head around, and knowing it is normal doesn’t make it easier. There is nothing anyone can really say to make it better, or to change that fact. The thing that has given me the most hope, the most fortitude in my most challenging moments thus far, is that I refuse to let my mind live in the future, because I do not know what that is. I only know what is true at this moment: I am here, I am alive, and, despite my limitations, I am still capable of living a life that I value, however I choose to define it. 

Anyone reading have experience with cancer either in themselves or their loved ones?

How have you dealt with health problems for yourself or the people that matter most to you?

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43 comments

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Hi Emily, Thank you for the bravery and vulnerability it took to share your story. Like you, I am living with cancer. I was first diagnosed with Stage 3 Melanoma in 2015, and in 2018 it spread to my lungs, liver and brain. I honestly didn’t think I was going to celebrate this Christmas. But I’m still here, just with a little less hair! And my scans continue to show positive results.
I can only say that by taking it one day at a time, being grateful and optimistic, and relying on my family, has saved my life. I had a hard time accepting this was Gods plan for my life. I’m unmarried and have no children. Both are things I want so deeply. I feel those desires in my soul, deeply. But my pastor reminded me that Gods plans are often mysterious but always perfect. But gosh darnet I have my own plans!;) I kid, because finding humor in life is one of my joys.
Anyway, I’ll keep you and your family in my prayers. It seems you have a lot to be grateful for. And your story will inspire others who are or are going to be battling this awful disease. God bless.

-Angela

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Angela, thank you for sharing your story. You. Are. Strong. I am so incredibly sorry about everything you have been through and continue to go through. I am so thankful that your scans are continuing to show that you are doing better. Will you please let me know how you are doing? I love your humor and you are in our prayers. I hope you are having a wonderful night. Thinking about YOU!

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Thank you, I appreciate that! You have a good night as well:)

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Hi Angela,

I’m so sorry that you’re dealing with mets as well. But fantastic news on positive scans! Scanxiety is so tough. I am here if you ever need someone to reach out to, please don’t hesitate to email. Cancer can be so lonely, and sometimes it’s hard to fins someone else who gets it. You will be in my prayers as well!

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Angela, I will keep you in my prayers too!! If you ever need a friend who is going through similar struggles, please don’t hesitate to email me. I’m more than happy to be a lifeline for challenges, tough days, and finding clinical trials. much love to you!

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Emily, thank you for sharing your powerful story.

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Isn’t she incredible?! I hope you are having a wonderful evening Libbie!

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thank you so much!

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Thank you so much for sharing and wow; just thank you.

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Thank you for your comment Kat. Emily is truly incredible. I hope you are having a great night.

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thank you for reading, Kat! And thank you so much to Janae, for being so generous in sharing my story (and for all of your prayers and encouraging emails!)

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Emily, the last paragraph of your story was so powerful and beautifully written. Living your life knowing you’re here NOW, not living in fear of the future … I know it probably took you a long time to get there, but I hope others with chronic and life threatening diseases can take some comfort from your words that a life with a terminal illness is still a life very much worth living and celebrating. Thank you for sharing your incredible story with us!

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Thank you so much, Andrea!

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Thank you for sharing. I have a friend living with an inoperable brain tumor and I try to reach out to her and offer help but I will make sure I am doing more. Praying for you and your family!

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Wow, I love your outspoken approach to your very difficult diagnosis. Thank you for being brave and sharing your story with us and giving us practical ideas about how we can help others in a similar situation. And Janae, I am loving this feature. Your blog has always been awesome but friend to friend is a special space.

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Thank you so much!!!

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Emily – thank you so much for sharing your story. I think you are absolutely incredible and it is amazing that you are using your experience to help others. I will be thinking of you and your family and sending positive thoughts and best wishes.

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I’m so sorry for everything you are going through, Emily :( But your positive outlook is amazing and you are so strong! Thank you for the advice on what to do for someone else in similar situations!

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Thank you for this, Emily. Can I ask a question (as a woman): Is localized back pain considered a first sign of breast cancer? That was one part of your story I didn’t understand. As I have twin toddlers myself (two boys!) I am especially curious about this.

One of my parents has end-stage throat cancer. Cancer is so devastating, so horrible and hard to process. Seeing it up close like this, it makes me worry as a parent myself so deeply. I wonder how I would find the strength to do what you do — how I could possibly balance treatment and motherhood and advocating for cancer awareness at the same time. You are a light!

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Hi Betsy! Thanks so much for your question, and for your support. Right back at you, both for navigating your parent’s illness (it’s just always heartbreakingly difficult, isn’t it?) and twin toddler boys – my hat goes off to you!

As for the back pain, localized mid-back pain isn’t a sign of breast cancer, but can be a sign of bone metastases. My cancer had spread from my breast into my bones (and that’s a whole separate conversation as to what that means). Essentially, I had spots in various bones (that sort of look like dalmatian spots on my imaging) where the cancer had carved out little holes and weakened the bones. My spots are in my vertebrae, sternum, rib bones, hip bones, clavicle, skull, and right femur. The bone pain feels like a really deep bone bruise, and can be really difficult to control. My back pain was due to a very small fracture in my vertebra that had gone unnoticed by a back specialist, physical therapist, chiropractor, and orthopedist, because people unfortunately don’t suspect metastatic cancer in young people. I had been complaining (very loudly) of this pain for almost two years before I found a doctor who listened to me.

Ultimately, if you have young kids and back pain, it’s reasonable to suspect (as I did for a while) that they’re related, but if you have back pain that is getting worse no matter what you’re doing to treat it, trust your gut that it could be a more serious issue and push for your care team to listen to you and explore every option. I hope that helps clarify things! I’m happy to talk more/answer more questions as well, either here or over email.

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This is such important advice when it comes to your health: trust your gut. You know your body best and when something feels “wrong.” Doctors are often overworked and overbooked and will dismiss symptoms that sound generic to them. Sadly, studies also show they are more likely to dismiss complaints by women, and to blame symptoms on a patient’s weight. You are your best advocate in the health care system.

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Thank you so much for sharing your story. You are so strong! Cancer has touched my family multiple times, unfortunately, and I had a scare of my own last year. I was lucky enough to have a benign mass but my goodness… it’s terrifying at the time. I am so inspired by your story!

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Emily, the message of living in the now is one of the most powerful things to share, and I appreciate your willingness to share that through your experiences. I hope that you continue to have treatment success as well as joys and laughter each day.

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Your story moved me to tears. Your outlook on life is just tremendously beautiful. I wish you and your family continued strength, love and optimism.

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So glad you two know each other. You both are amazing people. Thank you for your story. I love hearing people speak with optimism about cancer. Fighting cancer has been one of my favorite experiences in life as weird as that sounds. Keep fighting because there is always rainbows and sunshine after every storm even if the storm is continuous in your life. Pain is never permanent. One year ago this time I was headed to my third chemo treatment and this Monday I am headed to my 21 week appt with my first baby. Not sure what your sunshine and rainbows will be but I am sure it will be amazing!!

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Whitney, that is so incredible – sending you lots and lots of love as you prepare for a much more fun journey as a mom! Your little one will have such a wonderful role model in his life in you.

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Emily,
You me blog post today has touched my heart and I just want to thank you for your strength and sharing of your story. God bless you and your beautiful family

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Thank you so much, Naomi!

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Thank you for sharing your story; I think it’s super important that you are sharing your experience so others can know things to look out for. The advice you shared about helping those with cancer is crucial as well. We just learned that a young female in our family has breast cancer (shocked at how young you both are), and we did similar things to try and help.

As another commenter asked, I’m curious about the correlation between your back pain and your diagnosis. Anything you could share would be great.

Thanks and stay strong!

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Hi Jessica,

Thank you so much for those kind words. I’m so sorry to hear that your family is dealing with breast cancer at such a young age as well – please feel free to use me as a resource!

I responded above about the back pain – however, I’m more than happy to answer further questions you might have! It was such a strange symptom for me (and truthfully, for everyone) – I never would have connected the back pain with cancer, but it was and so here we are!

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Thanks so much for explaining that. Just so crazy. It’s honestly shocking that doctors did not take your pain complaints more seriously. I’m so sorry you are going through this and will be praying for you!

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You are my hero. Praying for you and your family.

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thank you so much, Alisha!

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Thank you so much for sharing your story – it was exactly what I needed to read today. <3 Your own strength gives me strength

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Thank you so much for sharing your story, Angela. It is so important to learn the lesson of following your intuition….knowing when something isn’t right..and acting upon it.
Wishing you and your family so much love and peace.

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Hello Emily and thank you for sharing.
I’m sorry for what you had to expirience so young in life. Hard stuff for our minds. You’ll be in my prayers and thoughts.
Here my experience.
My mother died at 48 and my beloved uncle, her brother, at 33. Cancer matters.
I’ve been diagnosed breast cancer in October 2017. In a few hours I’ll have a brain check. Cross my fingers :)
But everything is routine now. My mind has been in some dark places since I was young ( I was 16 when my uncle died…I loved him so much) but now….whatever. It’s gonna be what it’s gonna be :). This comes with age :) now I’m 47.
It’s get less heavy. Or there is acceptance.
But I’m sooooo lucky because I have the best brother ever : he is always been there, he is profound and strong and delicate and always asking me how I feel or what I think…and he is so fun….we laugh all the time….good laughs…..he manages to make us laugh in tears 😂😂😂. That’s the best gift ever that my parents left me. He remembers me of my uncle so much.
I can’t change what God’s plans are for me or for anybody else who’s struggling.
I really hope that people like us have someone who makes team with them, like a sport team : someone who play with us this game in team (even if it’s only 2 persons) where everyone has his own job to do but doing it togheter.
That’s me and my brother. And my partner also.
And sport : reading Hungryrunnergirl it’s a pleasure also because there are always good motivations to go out and run (or jump on the trademill and run). I read it daily. Thank you HRG
You’re in my mind Emily.
I send you a warm hug. 🙂

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Your courage and authenticity is amazing, Emily. You are beautiful woman, a radiant soul! Thank you for sharing your story as well as offering me insight on how to best minister to friends and loved ones facing terminal cancer or other tremendously difficult health challenges. Prayers for you and your family.

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Thank you so much for opening up and sharing your story, I am in tears reading this. You are so brave for everything you are going through and yet you have such a positive outlook on everything. I will keep you and your family in my thoughts and prayers <3

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Hi Emily
Thank you for sharing your story! My mom has been diagnosed twice with breast cancer, praying that it remains in the past!

I was wondering what was the name of the nonprofit you started and if it open for donations? I am looking for a good cause to donate to!

Thank you for your bravery, my heart goes out to you and your family and to everyone in the comments above! Have the best day!
Kat

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Emily, thank you for sharing your story. Life can be so hard for lack of a better word, but choosing to be grateful and live in the moment is so important. I lost my 25 year old daughter 4 months ago, she went misdiagnosed with a terminal lung disease for 2 years but was given a lung transplant, sadly she passed away from rejection and complications leaving behind 2 beautiful children. Madi was my friend and inspiration. She inspired a whole community and so many more, her life motto was “Life doesn’t have to be perfect to beautiful.” Her strength continues to inspire me to make life beautiful and look for her everywhere. We are shattered but she told us she didn’t want us to be sad forever and wanted us to give her children the childhood she had. So keep sharing your story, even the hard parts. Prayers for your healing.

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Oh Tammie, my heart hurts for you, and I am holding you close in my thoughts as you navigate this new part of life. It sounds like you raised an incredible daughter whose legacy will be carried out by her amazing kiddos. Sending you and your family so much love.

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Thank you for expressing your vulnerability and for remaining truthful yet keeping a positive energy. You are a light and an incredibly strong being.

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Thank you so much, Hannah!

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