Though I have never met Raegan in person, she is someone who has become very dear to my heart. Her story is a great example of why Krista, Shauna and I began this journey of sharing women’s stories. Our stories matter, and they connect us all on a deeper level. That has never been proven more true for me, than with the experience of helping Raegan share her story.
The most beautiful words I believe we can say to another is, “me too.” There is a bond that is formed when you can exchange those two simple words. Through Raegan vulnerably sharing her story with me, she validated so much of my own. As I learned more about Raegan’s experiences in living with Lyme Disease, those words “me too” kept playing over and over in my mind. It was as if she were writing my experiences. My experiences that up until then, had never been validated. Doctor after doctor had made me feel like I was crazy. It had been 3 years of battling and knowing something in my body just wasn’t right. My symptoms were weird and didn’t fit into a pretty little box like most doctors would like. All I knew is I went from having a huge pain tolerance, which included 4 natural child births, to not being able to brush my hair or lift my kids into their car seats. I went from refusing to take any type of medicine for even a simple headache, to taking an assortment of medications for random diagnosis like Fibromyalgia and Hashimoto’s. We spent thousand and thousands of dollars trying to fight something, but not knowing what it was that I was truly battling. That was until Raegan shared her story.
Those words, those beautiful words of “me too.” All of her symptoms…”me too.” All of her experiences with doctors…”me too.” All of the isolation from friends and family…”me too.” Doctors and other people saying but you don’t look sick…”me too.” Living days where success meant getting the mail…”me too.” All of the joys in life that were ripped away…”me too.” It is because of Raegan sharing her story that I too have been diagnosed with Late Stage Lyme Disease.
One of the questions I asked Raegan when interviewing her was, what are your hopes in sharing your story? Her reply,
If I can help lead anyone else to a real diagnosis or simply encourage someone to listen to their body more often, then my work in telling my story will be completely worthwhile.
Well Raegan, your hope came true. And that someone, is me. You and your story helped lead me to listen to my body and put me on the path toward an accurate diagnosis. Thank you from the bottom of my heart. I know I would not be on my way to health without you sharing your story, and it is because of you that I have found hope again. I look forward to the day that we meet in person…two healthy ladies who can embrace in a hug and say “we kicked Lyme’s ASS!” I love you my fellow Lymie. Thank you for honoring us all with your story.
*If you would like to help Raegan fight her battle against Lyme Disease, please consider donating here . All donations, big and small, make a huge difference and is greatly appreciated. We wish Raegan the best as she begins this journey toward healing her body.
This feature story is very personal to me and I am honored to introduce you to Raegan Gottlob. After 5 long years of being chronically ill, Raegan has recently been diagnosed with Late Stage Lyme Disease. This debilitating disease is often referred to as “The Great Imitator” due to it’s symptoms often mimicking other diseases. Her story is one of great suffering, yet filled with such beauty. These are her words, this is her story…
After nearly 5 years of searching and not knowing why I was chronically ill, I finally have an answer. It almost feels weird to be able to say, “I have Lyme Disease.” Initially, I had mixed feelings about receiving this diagnosis. It was scary, it was extremely validating, and it was relieving all at the same time. I want to share my story because in some ways it validates my experience to be able to share. I am not crazy. I am not lazy. I have a real and very complicated disease. I think sharing my story is an important step in my healing journey. It helps to heal the wounds left by incompetent doctors who told me that there was nothing wrong with me. By people telling me that I should just try harder. Eat differently. The wounds left by me forcing my body to keep going even when I knew in my heart that what my body really needed was trust, rest, and more trust.
I also want to share my story because I know that there are others out there that are going through what I did. Doctors are not finding anything wrong with them, yet they are slowly deteriorating. I think the slow deterioration can be misleading because you might think, well I’m not that sick and so you forcefully carry on as usual or as close to usual as possible. Six months later, you wake up and you can’t go to work anymore, you can’t walk your dog anymore, you have no social life left, and it’s a real struggle just to make it through each day.
Five years ago, I was running long distance races over mountain passes and now it is impressive if I manage to go grocery shopping.
My health problems began snowballing in 2010. I hadn’t had too many health problems prior. I knew that I was sensitive to gluten and had struggled with depression since I was a child. Other than those, I was medically “normal”- a word that would later come to haunt me. I also had really horrible menstrual cycles as a teenager and by horrible I mean extreme pain and puking. It turns out that most women with Lyme Disease have menstrual difficulties and their overall symptoms are much worse during their cycles. Lyme Disease is also strongly correlated with many autoimmune conditions, like Endometriosis, Celiac Disease, Rheumatoid Arthritis, etc. In the fall of 2010 I woke up one morning with a stiff neck. This stiff neck was different and it has never fully gone away in the past 5 years. I still have it as I write these words. That was the first weird symptom that I recognized, followed by hip pain and hypersensitive hearing that developed throughout the following year. I couldn’t tolerate watching movies at a normal volume and crazy things like water running from the faucet were unbearably loud and assaulting. I started wearing noise-cancelling headphones around the house to help block the noise of day to day life. I was referred to an ENT (ear, nose, throat) specialist for this problem where I was diagnosed with Hyperacusis (basically just a name for the aforementioned hypersensitive hearing) and told there is no cure or helpful treatment available. I think that was the first time I cried the whole way home from a doctors office. Soon came the onslaught of symptoms: fatigue, migraines, bone pain, difficulty exercising, abdominal pain, oversleeping, muscle weakness, other food allergies, migrating joint pain, teeth grinding, insomnia, etc. Until February of 2015, my only diagnoses were Hyperacusis, Celiac Disease, and a pretty major Vitamin B12 deficiency. You must understand that 5 years is a pretty long time to experience this myriad of weird and seemingly unrelated symptoms and to have every doctor tell you that your blood work is normal, your lab results are normal, your ultrasound is normal, your MRI is normal, your colonoscopy is normal (yes, I had a colonoscopy at age 25 and I was the youngest person in that clinic by probably 40 years…did I mention humble pie?). My personal favorite was You don’t look sick. Five years of this definitely makes you question the validity of your experience. I really did wonder if I was just crazy and imagining things.
While doctor after doctor tried to convince me that nothing was wrong, my life continued to fall apart. I knew it wasn’t just in my head and that something was significantly wrong. I want to encourage others that are experiencing some of these experiences not to give up. Keep researching, asking questions, and to find a doctor who will listen. It is imperative to become your own advocate when you are chronically ill or it is likely that you will never get better. Rather, you will come home with labels for things that have no cure and no concrete root cause like Fibromyalgia, Chronic Fatigue Syndrome, Depression, Multiple Sclerosis, Rheumatoid Arthritis, Autoimmune Diseases, etc. These labels will cause you be medicated for life and meanwhile, your symptoms may not improve.
Through advocating for myself, I finally received my positive test results on February 5th, 2015. My first emotion was overwhelming relief and shock at actually having an answer. This moment of elation was quickly followed by the somber reality of what a long road it was going to be to recovery.
For the first time in 5 years, I finally felt like I had permission to feel so tired and sick.
It was very validating in a way, I finally had a concrete answer to give my friends and family. It’s kind of funny because I feel exactly as terrible as ever, but now I’m allowed to feel this way because there is a name for these tiny bacteria that have taken over my body. It is a completely overwhelming diagnosis to receive for many reasons. One of these reasons is that the treatment options are not always successful. Many people do not get well on antibiotic therapy. Many people do not get well on herbal therapy. Some people get well with a combination of both. Some people never seem to fully recover. It is very difficult to find a doctor who knows how to treat late-stage Lyme Disease. Many doctors think that 8-14 days of antibiotics totally cures Lyme Disease. In reality, this is only true if you have just been infected. Once many months or years have passed and the infection has spread throughout the body, recovery times are estimated to be at least 3-4 months for each year that you have been sick. For me, that means that it will probably take at least 15 months for me to fully recover but it is very likely that it will take even longer. I am currently on the waiting list for two different Lyme-Literate MD’s. These doctors are so overwhelmed by patients that the waiting lists are 6 months to a year long. I am doing a herbal program developed by Dr. Lee Cowden while I wait to be seen by one of these doctors. Since my diagnosis I am often asked if I’m starting to feel better? My answer is no, and to be completely honest, I usually feel like shit. I feel like I am dragging around ten pound weights on my arms when I do the dishes. I feel like I got hit by a train when I wake up or that I had way too many drinks last night, which I assure you is not on the menu. Taking a shower and checking the mail make for a pretty successful day. No, I am not feeling better yet. Unfortunately, I will need to endure the downhill journey of getting much worse before I start to get better. Let me explain, in order for me to heal/feel better I have to successfully kill millions of microscopic bacteria that are living in my tissues, my joints, my brain, and my organs. As these bacteria die off they release endotoxins much faster than the body can handle, which provokes sudden and exaggerated inflammatory responses. Inflammatory responses can include joint pain, bone pain, migraines, severe brain fog, and pretty much pain anywhere or everywhere.
The slow deterioration of my body and mind over the years has been completely devastating in every possible way: emotionally, spiritually, mentally, relationally, financially, and physically. Devastating in the sense that everything I used to hold onto, feel in control of, or derive comfort from was slowly stripped away from me. It took me a long time to stop being angry and frustrated about not being able to do the things that I use to. For awhile I struggled deeply with the question of Why is this happening to me? I’m a good person, etc. I was hurting myself emotionally, psychologically, and physically by consciously choosing to not to listen to my body’s cries for help. I finally realized that I would truly never get well if I continued practicing this detrimental pattern of self-inflicted hurt. This realization has been an incredibly important turning point in the process of healing because healing is so much more complicated than simply addressing the physical symptoms. I have had to really learn to cultivate a pattern of self-love in my life, in all aspects. One example of this is that I am no longer working at this time because I know that if I continue to expend all of my energy (and then some) during the long hours at work, I will never get well. Here enters the biggest piece of humble pie you have ever seen, which is most easily digested in small bites. However, this is not how it was served to me. It was more like wolf down this giant dose of humility in one sitting…which included quit your job, become financially unable to provide for yourself, and hit rock bottom, all at once. I knew this had to happen if I ever wanted some semblance of a normal life again.
Chronic Illness not only affects everything in your life, it also deeply impacts everyone in your life. I am very fortunate to have a supportive family who does everything they can to help. Whether it be financial assistance, coming to hang out with me, a note to let me know that I am loved, or just making me laugh. Sadly, some of my friends have been weeded out by the nature of chronic illness. It’s really hard for some people to deal with suffering, so instead they just avoid it. Honestly, I fully understand this reaction and have no hard feelings toward anyone who didn’t want to deal with it. Unfortunately, it is always the ones closest to the epicenter of chronic illness who are the most affected and who have no choice but to embrace the suffering. My caretaker has been my boyfriend, Wylder, and I can tell you without a doubt that it is no easy task. I have been some version of sick the entire time we have been together and it has only gotten worse. It’s tough because we are young and we’re not exactly out having lots of fun. We both love traveling and are very active, outdoorsy people when circumstances allow for that. It’s been really heavy and disheartening a lot of the time, especially before I got a diagnosis. We are severely unbalanced on the suffering versus fun scale. We have been saving up a seriously huge pile of fun IOU’s for later, for that teeny tiny little flicker of light at the end of this tunnel. It’s been really important for us to keep an open dialogue throughout this journey. We talk about how much it hurts and how unfair it feels and we wonder if it will ever end. We try to ensure that Wylder maintains some semblance of normalcy by going rock climbing and socializing with people other than me. The balance is not always perfect and it is a heavy burden for him to carry during those times. Let me clarify, I’m not referring to myself as a burden but to the heavy weight of prolonged suffering. Basically, there are only two choices: embrace the suffering and expand your experience by opening your heart or avoid dealing with the suffering and allow it to narrow your perspective by making you hard, angry, and closed off. It’s a daily practice of mine to embrace the suffering. Maybe that’s what I should say the next time someone asks me what I do all day…Ha!
As I reflect over the last 5 years, I feel like I am polishing my own mirror. I have never seen my true self so clearly and been so devoid of identities as I am right now.
All of my identities have slowly been stripped away. I use to pride myself on being a strong, independent woman who can make her own money and take care of herself. I used to hold very tightly to my illusion of control over my life and my experiences. I can no longer say that I’m a runner, skier, swimmer, rock climber, house painter, etc. I no longer have a strong physical body. I still want to do and be and have these things (except house painting!) but they are no longer defining factors of who I am. I am no longer gainfully employed or financially self-sustaining. That is a really difficult reality to embrace in this society, especially at age 28. I recognize, I can no longer be defined by the things I can or cannot do/be. Learning to love myself when I can’t get out of bed is the new title of my life story. I love myself now more than I ever could when I was considered to have a self-sufficient life. It’s actually very ironic because chronic illness is terrible on so many levels, but I probably never would have learned to wholly love myself if I hadn’t had all of my identities and semblance of control taken away from me. Who am I now? I’m a girl who works on opening my heart every day no matter what the day holds. I am a girl who has really begun to find joy in the tiniest victories and the simple feeling of the sunshine hitting my face. I’m a girl who lets go everyday because I’m tired of being dragged. I’m a girl who has somehow found utmost gratitude in my situation and I am so thankful for that. I’m a girl who has found true compassion in the heavy blanket of darkness. I am so grateful that my heart is able to embrace the suffering, even though my mind and my body struggle with acceptance every single minute of every day. My heart is more open than ever…so bring on the polishing!
*Finally, we couldn’t end Raegan’s story without asking What is your favorite drink? Right now my favorite drink is probably spearmint tea with hemp milk and raw honey. If you meant adult beverage, I really can’t have those in my current state:)
Friendlies! Our second Vlog is up where we discuss “New Years Resolutions” as well as reflect on the Y2K craze…Remember that? Krista proves why math is not her strongest subject!
The drive to the hospital was met with busy chaos. The hardest phone call I’ve ever made was to my husband, Mark that afternoon. I had to call and tell him that his 2.5 year old little boy had Type 1 Diabetes. The same disease that he grew up around. The same disease he held a lot of resentment towards for the way it impacted their family. We both went into survival mode of working out logistics for childcare, school, etc. We divvied up our list of people to call and arrangements to make. This left little space to process or even acknowledge the emotions we were each experiencing. My next call was to my sister. Oh how I needed her. If only there weren’t 1,300 miles between us. She provided the comfort I needed in order to make the dreaded call to my parents. While doing this, I just drove. I instinctively drove to my friends house who I knew would do anything for me in my moment of need. I knew Crew would be safe and happy there. Looking back, it’s beautiful to think of a friendship like that. After working out logistics for the other two, I remember adjusting my rear view mirror so I could just stare at Keaton and pray over him. I needed that time. I knew the next few hours, days, months and years in his life were going to be a challenge like we’ve never faced. A challenge that would change the course of his story and our family’s forever. We met Mark at the Children’s Hospital Emergency Department, and embraced with a hug of heartache and compassion for the other like I’ve never experienced. They rushed us back to a room, even though the waiting area was full of kids. A similar simple, yet complex device like we saw at Keaton’s pediatrician was used, but this time gave us an accurate number. It read 695. That was 7 times higher than a normal blood sugar. Right then and there he was given his first dose of insulin (a word that now fills our daily vocabulary). To the doctors surprise, we had caught this new diagnosis early, within days of onset. Most kids go into something called DKA before they are correctly diagnosed and many come very close to death, but Keaton had not. We were prepared to be hospitalized for days, possibly through Christmas and instead we were free to go home that night. We were instructed to report back to the hospital the next day so we could learn how to take care of Keaton and manage his Type 1 Diabetes. While going home in many ways was a relief, it also brought about a lot of anxiety. I felt safe within the confines of those hospital walls. Every other person I saw was outfitted in scrubs or a white jacket. They knew what they were doing, I did not.
We came home to my parents caring for three confused and worried kids. The compassion they shared for Keaton was beautiful. They had a lot of questions and most we didn’t have answers for. One question I will never forget came from Campbell who pulled me aside so Keaton couldn’t hear and tearfully whispered, “He’s going to die, isn’t he?” I reassured her he wasn’t, and explained how we caught it early. In a confused tone she whispered back “Then why does diabetes have the word die in it.” Wow. That question still shakes me to my core.
I slept sound that night. I don’t know how. Perhaps my body knew how many sleepless nights I was about the embark on and graciously allowed me one final restful night. We woke up well before the sun and headed to the hospital with a sleepy Keaton in tow. That day was an exhausting 8 hour crash course in managing this disease, which unknowingly included 12-15 finger pricks and 4-6 shots daily, just to keep him alive. I quickly learned this was NOT to cure the disease, there was no such thing. This was merely to keep him alive. We practiced administering the shots on oranges and I got pretty good at it. That is until I had to give Keaton a shot. I couldn’t do it. I. Just. Couldn’t. It took 2 nurses to restrain his little body and I couldn’t be the one to poke him with the needle. It was such a weird dichotomy that the most loving thing I could do for my son in that moment was something that caused him so much trauma pain and trauma. I couldn’t grasp that concept. I still have a hard time with it. As I held the insulin filled syringe I realized that even though I couldn’t do it, I had to…and so I did.
The next few weeks are a hazy blur. If only I knew then what I know now, I would have pleaded to be kinder to myself. I put so much pressure on myself to maintain life like it was before diagnosis…but it wasn’t. I held onto so much guilt around not making it to Campbell’s Christmas party like I promised, not volunteering for the opening of our new church plant, not being prepared to play Santa, etc. Somehow I even ended up hosting a Christmas Eve dinner gathering at our house just three days after diagnosis. Looking back, I realize that was crazy. It must have been my attempt to pretend everything was ok…but it wasn’t. Why couldn’t I be kind to myself and love myself well during that time? Why wasn’t I able to advocate for my needs?
I wish I could go back and warn myself not to take it personal when the friendships around me would change after diagnosis. I felt so different and so isolated. Because type 2 diabetes is such a national epidemic and responsible for 95% of people with diabetes, it is understandable that they often confuse the two, when in reality they couldn’t be more different. Keaton suffers from type 1 which is an autoimmune disease. Nothing, or no one caused it. It wasn’t anything he ate or didn’t eat. Nothing we did, or didn’t do that caused this. His body simply stopped making insulin. Unlike type 2, there is no exercise, pill or diet plan that can cure him. Believe me, I wish there was. I was devastated when friends who know me asked questions like “Did he just eat too much sugar?” I’m sure it was hard to be my friend during this chaotic time because I truly didn’t know what I needed. I knew what I didn’t need…I didn’t need people telling me about their experience with type 2 diabetes. I didn’t need comments like “at least it’s not cancer”… “is he getting use to the shots yet?” … “they make shots now that you don’t even feel, right?” … “my grandma’s cat had diabetes” … “my grandpa had diabetes and had to have both his feet amputated”… or my favorite, “God must have known you could handle diabetes, he sure knows I wouldn’t be able to.” While there is a lot of grace for people who don’t know what to say and may unintentionally say something offensive, it still hurts deeply. Admittedly, while it was so easy to know what I didn’t need, it was harder to identify what I did need. Honestly, sometimes I still don’t know what I need. I just needed people to enter into the pain with me. To hold my hand as I walk this uncharted territory. I have many in my life who did just that, and I know how blessed I am to have those friendships. So many have loved me and my family so well. While there has been great suffering in our lives since Keaton’s diagnosis, there has also been so much beauty and those special friendships represent that beauty for me. This experience has been truly unique in that I have never experienced suffering and beauty at the same time like I do now. Before Keaton’s diagnosis my story included times of joy and sorrow, triumph and tragedy, but they were separate experiences from each other. It wasn’t until this diagnosis that I embraced my ability to hold both the suffering and the beauty this life has to offer at the same time.
It’s been a year and a half since diagnosis and I still find myself wearing multiple hats each day. I am part mom, part counselor, part nurse and part chemist. I’ve learned math I never knew existed before and to be honest I’m pretty good at it, which I’ve learned to hate about myself. I hate that food and carbohydrates consume my every thought. I resent terms like insulin, blood sugar, ketones, site change, bolus, A1C, and so many more, for what they have created my family dynamic to look like. Our alarm clocks are permanently set for midnight, 3:00am and 6:00am to check Keaton to make sure his blood sugar doesn’t drop too low causing him to slip into a coma or death. I live in constant fear of “Dead in the Bed”. While all this suffering does exist on a daily basis, I am also intentionally aware that I get to share this beautiful life with 4 amazing kiddos and one fabulous husband. I get to see Keaton live into his God given gifts of empathy and bravery at the young age of 4. I also get to witness the authentic compassion and love my other three kids offer. We began this journey soaked in urine, chaos and confusion. While those still remain, we are also learning to be soaked in love, compassion and grace. I’m in awe of this kid I get to call mine. I’m proud of who he is…my brave, loving, hilarious warrior. May you grow to define Type 1 Diabetes Keaton and may it NEVER define you. May we learn together how to walk through the suffering of this disease so we can fully embrace this beautiful life.
I was given the opportunity to share part of our story with Qittle and it was one of the most loving and healing things I have ever done for myself.
Loving ourselves through the process of owning our story is the bravest thing we’ll ever do. -Brene Brown
*A continuation of Cortney’s journey through a preventative double mastectomy which began in Cortney’s Story: Part 1
What support have you had throughout your decision to have a double mastectomy?
My husband has fought this fight right alongside me. To keep me from the stress and anxiety, he handled all the insurance paperwork and many of the never-ending insurance related phone calls. He also fought (and won) a long legal battle over my insurance’s attempt to not cover my surgery. He has been an empathetic friend, a compassionate caregiver, and an encouraging cheerleader when I needed it. He has campaigned tirelessly to disprove any fear I had about losing any of my beauty after the surgery. It has been equally tough on him to watch me in pain but he is the first to remind me that we are almost done with the process that will hopefully keep me around for a very long time.
My kids have been so understanding and helpful. My 7 year old even learned to change my drains all by himself! My 9 year old daughter has been my loving encourager, by brushing my hair and giving me bible verses to get me through the rough days.
My sister and father have been amazing supporters, caregivers and stand-in “moms” for me. Most importantly, they back me up on my decision, even when people think it seems radical. They understand because they’ve been there. They’ve seen what havoc cancer can wreak on a family and they don’t want that for us. They knew exactly what to do to take care of me because they’ve been through the recovery process before, too many times.
In addition to my family support, I have an incredible community of girlfriends who surrounded me and took care of me. It was a tough thing to allow my friends to do my dirty dishes, fold my laundry, drive me around, and take my kids for days on end. For the first 2 weeks, my amazing friends and family had to do so much for me! My friend created a Care Calendar and arranged two visits per day for me plus someone to bring my family dinner at night. They surprised me with gifts, flowers and recovery supplies when I came home from the hospital and even paid for my house to be professionally cleaned. It was incredible and honestly, necessary. I was so humbled at their thoughtfulness and support. I am so blessed with the friendships God has put in my path.
Lastly, I was linked up with a network of Bright Pink women who had already undergone the surgery. I also had friends and acquaintances who were more than happy to recount their mastectomy stories with lists of things I would need to prepare for. They were amazing. All of the women answered endless questions and late-night emergency texts. They bought me products to prepare me for a more comfortable recovery that were specific to my surgery, like mastectomy pillows, button-up tops and special sports bras. Everyone who has undergone a mastectomy knows the difficulty and discomfort of the process and I was overwhelmed by how helpful everyone was. There is definitely an immediate sisterhood, a bond that you share when you go through something like this. I even had someone I’d never met before contact me and offer to come over and change my drains! I spent hours on the phone with these helpful and encouraging women giving me advice, instructions and sharing their personal stories.
How has this process been on you emotionally, physically, and spiritually?
Emotionally, when you look in the mirror at a chest that is completely bruised, with huge scars and drains and a pain pump still hanging from it, it is shocking. I had two very rough days where I wept at the heaviness of the whole process. However, it wasn’t as bad as I thought it was going to be, at all. I’d like to give God the glory for that, since I’ve had so many loving friends praying for me!
Physically, it sucks! I’m not gonna lie. Even though I sailed through surgery with no problems, I’ve wrestled through some very painful days since then. I know I have uncomfortable days ahead of me but I constantly remind myself that it is only temporary. Although the pain has been great at times, it has never been more than I could bear. God has shown Himself faithful to walk with me and heal me as we take each day, one at a time.
A constant theme that has run throughout each stage of my life is this, “God is faithful. He never changes and He never leaves us to go through it alone.” He knows my story, He is never surprised. A friend reminded me recently that God loves the meaning my life has, its potential, its beauty, ALL of it! Joshua 29 says that “He has plans to give us a hope and a future.” I’m also learning that it is not about me. My story, even though it is mine, is God’s and He will not relent until He is glorified because I gave him my heart a long time ago. His focus/desire is my greatest potential and despite me, He draws me to His greatness and the reality that His will will be done.
God wants to heal us so we can live for Him but sometimes that doesn’t always mean healing our body. Many times I have asked for physical healing for myself or loved ones and instead, my healing comes as peace, patience, or a greater understanding. We conjure up a vague reality of ourselves that we think we can control when we really can’t. I am always drawn back to Jesus when I try to grab ahold of the pen from the writer of my story. He has so much more in store for us than we could ever ask or imagine.
What will you suggest for your daughter as she gets older?
Hopefully by the time she is older we will have a cure, or at least more information about what causes cancer so we can take less drastic preventative measures. Honestly, I can’t even bear the thought of her facing major surgery and possible complications that come with it and someone cutting her precious skin. She actually came into my room one day during my recovery and told me that someday she wants to have the surgery too, if she is also high-risk. Even at 9 years old, she is old enough to weigh the pros and cons. Unfortunately, she has had too much firsthand experience with breast cancer as she has four grandmothers diagnosed. My mother-in-law was diagnosed the day after Kieran was born, so she faces it on both sides of the family.
What do you wish you would have known before the surgery?
I wish I would have known earlier how much help I would need, all day, throughout the day in the first 2 weeks. I didn’t find out until my pre-op appointment that I would need someone to change my drains twice a day, make my lunch, help me get dressed and undressed, wash and dry my hair, take me on walks, etc. I also wish I would have known that I wasn’t going to be able to drive for a month! Everyone heals differently, but they didn’t allow me to drive until I was a full month post-op. Friends had to drive me to the myriad of appointments including post-operation visits for each surgeon, expansions, and physical therapy visits.
I wish I had known about Bright Pink earlier in my journey. I only joined in December of last year and it has been so beneficial to me throughout this process. I don’t think I could have done it without the wisdom, experience and support I’ve received from those girls.
Where are you now in your recovery?
I chose a nipple-sparing, prophylactic double-mastectomy with an expansion phase which means two separate surgeries, four months apart. The first surgery I had in late April removed all my breast tissue and replaced it underneath the muscle with what is called an expander, which is an empty plastic bag that can be inflated. I had 3 separate “fills” of saline into my expanders until they got to be the general size I’m happy with. The expander takes 3 months to stretch out my pectoral muscles to accommodate the eventual implant they will swap it out for in my second surgery in September. The expansions were the most painful part physically and I am through it, so the worst is definitely behind me! Yeah!
I’m also so grateful to have had an opportunity to be reconstructed. Years ago, that wasn’t even an option. I’ve seen some of the “finished products” of reconstruction on women in my Bright Pink group and it really is amazing what surgeons can do now! I was able to keep my nipples and only have scars on the underneath/sides of each breast and some tiny scars where the drains were. The expanders are not very “natural” looking and are super-uncomfortable but they are only temporary, they come out in a few months. Almost there!
What advice would you give another woman in a similar situation as you?
Every woman is different even though our risks are similar. We all have taken different paths to get to this diagnosis and each person’s journey may lead them to different treatment options. For me personally, prevention was better than treatment. I’d rather be proactive than reactive with my health and I can honestly say I have no regrets. I may have possibly prevented my loved ones from experiencing the same tragedy that I went through, and that feels good. I am reminded every morning when I wake up to my loving husband and precious kiddos that I made the right decision. The pain is temporary and it has made me stronger, bolder.
Be your own health advocate…treasure your chest! Even though science has advanced so much in the past few years, tumors still go undiagnosed. Just this year I met a cancer patient at a National Breast Reconstruction Day event who had a mass the doctor said they thought “looked benign” for years in ultrasounds and mammograms, but actually wasn’t. Yeah- that still happens.
Talk to your doctor about seeing a Genetic Counselor. Your counselor will asses your general risk and recommend if you need to be tested for the BRCA gene or not. Knowledge is power and information is beneficial, not burdensome. The more you know about breast cancer, the better equipped you are to live proactively and reduce your risk. You are not alone. Go to http://www.brightpink.org and get information, tools, resources and personal support to help you take the next step toward risk-reduction and early detection! Also, please feel free to use me as a resource. I would love to help anyway I can.
*We are so thankful to Cortney for gifting us with this powerful story. We invite you to engage her story in the comments section below. May all of our reflections and comments bring honor to the beauty of her story.