Living with MBC
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. 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. 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%. 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. My next set of scans are scheduled for the end of February, so I will know by then whether the clinical trial drug is effective. 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.