breast cancer

Jun23

How to Engage the Story of Another

As we continue to hold Cortney’s story (Part 1 and Part 2) as a community, it is my hope that we continue to learn how to allow the telling of another’s experience to grow our understanding of life and increase our wisdom. I wholeheartedly believe that is how we, as the receivers of a story, can tap into the transformative nature of story-sharing. We must sit with it, think about it, engage it and reflect on the themes and messages underlying the story. At times, connecting to a story feels seamless. At other times, entering into the story of another can be challenging. At times the disconnect can be the result of a guardedness by way of the story-teller, but often the disconnect has more to do with the listener’s own capacity (or lack thereof) to reach past the invisible fences that leave us feeling alone in our own stories.

In her blog, The Silver Pen, Hollye Jacobs offers insight on how to be the silver lining around the cloud of cancer to friends and loved ones battling the disease. After working as a nurse, social worker and child development specialist for 15 years, Hollye was diagnosed with breast cancer in 2010 and learned firsthand what it was like to be a patient and to be the one in need of the care, guidance and support of others. In my opinion, her wisdom and instructions can easily extend well beyond solely engaging loved ones with cancer. Whether you are connected to someone who is recovering from a preemptive double mastectomy and preparing to have reconstructive surgery, or you are supporting someone who just found out they have an autoimmune disorder – whatever the life-altering scenario, Hollye’s tips are worth embracing.

It’s so easy to connect with friends when talking over lunch, catching up while going for a hike, or planning a dinner party. However, if cancer strikes your friend, the dynamics of your relationship will change in a big way! I have experienced this both as someone who has had cancer as well as in the position of being a friend of someone who has cancer.

As I have said before, cancer does not happen in isolation. It didn’t just happen to me. It happens to a person’s family, friends, and community. What this means to you, the friend of someone who has cancer, is that you have the opportunity to play an important supporting role for your friend throughout their cancer journey. Don’t feel overwhelmed or helpless. They may see you as of their most important Silver Linings through out their sickness.

*Continue to read her five suggestions on how to support a friend with cancer over at The Silver Pen.

Jun18

Cortney’s Story: Part 2

*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.

Cortney is a wife to Ryan, a mama to Kieran (9) and Cale (7) and her favorite drink is Sangria.

Cortney is a wife to Ryan, a mama to Kieran (9) and Cale (7) and her favorite drink is Sangria.

*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.

 

 

Jun11

Cortney’s Story: Part 1

It is an honor to introduce you to a dear friend Cortney. I first met “Cort” 9 years ago as we were first time moms trying to figure out this new life with a little one. Along with three other first time moms, we formed a playgroup as a way to support each other through the transition into motherhood. Our group of 5 moms with 5 kids has now grown to 5 moms with 14 kids. We still manage to get away for playgroup from time to time, which is now more appropriately titled “Girls Night Out.” We have done life together through many seasons of highs and lows and have experienced great beauty and pain together. We know each others stories well. I vividly remember the day Cort shared she was pregnant with her 2nd and 3rd child…twins! She was beyond excited, yet anxious, and she beamed with that pregnancy glow. Late into her 1st trimester one of the twins she was carrying passed away. The mixed emotions she experienced knowing one twin had lost it’s life so the other could thrive was so heartbreaking yet powerful to watch. Unfortunately, that wasn’t the only loss Cortney has experienced. She has also had to endure the painful death of her mom after a 10 year battle with breast cancer. This is where her story picks up. Please join me as she vulnerably shares her decision to have a preventative double mastectomy a short 4 weeks ago. Here is her truly inspiring story, in her words…

What led to your decision to get a double mastectomy? Can you walk us through the process of that decision?

My mom was diagnosed with stage 3 breast cancer when I was a teenager and fought almost a 10 year battle with it before it finally took her life. Back then, it was very rare to live that long with cancer, so she was a trooper. It started out as a lump in her breast and then metastasized into her bones and eventually into her brain. She underwent so many painful procedures; experimental bone marrow transplants, vertebrae fusing, spinal taps, lung aspirations. Ugh- it was so tough on her. Cancer tortured her physically and the rest of our family emotionally. During the later years of my mom’s sickness, I started struggling with depression when the very real feelings of hopelessness washed over me. We had to stand by helplessly as we watched her become a shell of who she once was. Not fun.

When I entered my thirties, I started getting regular mammograms because of my mom’s young age at diagnosis. My mammograms showed that I too had the same kind of fibrocystic breast tissue that had made my mom’s cancer so difficult to detect. I also had several masses in each breast. Awesome. After a biopsy of one small area, I was told that it was benign, but that there were pre-cancerous calcifications lurking around in there and we really needed to monitor them. This was frustrating to hear as I remembered that years before my mom was diagnosed, she had found a tumor in her breast and her doctor told her, “It looks ok, you just have very fibrocystic breasts. We’ll just monitor it.” Argh! Several years later, both of my grandmother’s were diagnosed with breast cancer too. Both underwent mastectomies but for one grandmother it was too late, she passed away after it metastasized into brain cancer.

Last year my masses grew to the point that I could no longer sleep on my stomach comfortably and I went in for another ultrasound. Once again, they said, “It looks ok, we’ll just monitor it, but you really should go talk to the Genetic Counselor.”  After years of putting it off, I went and did a session of genetic counseling where I was diagnosed as high risk due to personal family history (my mother diagnosed early and two grandmothers and a maternal great-grandmother with breast cancer) as well as other factors. I was given a 26+% diagnosis, which means I have over a 1 in 4 chance of developing breast cancer someday. I took the BRCA gene test and tested negative (yeah!) however, this did not affect my high risk diagnosis since I was still placed at the 26+% for developing the cancer in my lifetime. I basically had three options:

1) Monitoring/ surveillance for early detection with a mammogram, MRI, ultrasound and 2 specialist visits per year for the rest of my life. This would cost nearly $2,000 per year even with my insurance.

2) Taking a low-dose of chemotherapy for the rest of my life.

3) A prophylactic (preventative) bilateral mastectomy and possibly reconstruction. I would have no more mammograms for the rest of my life (yeah!).

After struggling through such a painful situation with my mom and then watching both of my grandmothers have double-mastectomies, I really wrestled with the anxiety of the seemingly inevitable diagnosis that many high-risk women like me deal with. I walked into every mammogram, ultrasound or MRI expecting to get a diagnosis of cancer. I dreaded those visits and so did my husband. I also knew that I didn’t really want to keep going back for unending painful biopsies of my growing masses, especially since the number had grown to three by this time. Awesome.

My genetic counselor recommended Bright Pink to me. They are a national non-profit experiential outreach group focusing on the prevention and early detection of breast and ovarian cancer in young women. They provide support for high-risk individuals like myself. I went to some of the events (all by myself) and met some amazingly brave women who are all at various stages on the monitoring and prevention track. I made some great friends among these inspiring women. They helped educate me in the process and give me advice on my situation. This group ended up being invaluable to me through this journey and in my decision making process. I would have been lost without their information, help and support.

My husband and I prayed hard about the decision, asking God to direct us and lead us through the process. Our friends also prayed over us. We asked God to completely close the door if we chose a path that was not for us. I couldn’t ignore my intuition and I quickly came to the decision that I wanted to have the double mastectomy and reconstruction. This way I could be free from the emotional roller coaster of developing the disease that has taken the lives of too many amazing women in my family. I wanted to be able to know that I did what I could to give my two kids and husband the best chance of having me in their world for as long as possible. I want to be able to dance at their weddings and hold my grand babies. Obviously, this is not guaranteed, nothing in life is, but it is a proactive solution to eliminate a very probable outcome.

Tell us about your mom…

Cortney and her mom

She was a light. She was an incredible friend, comforter, encourager, servant, bible study leader and teacher. She was an amazingly gifted mom. She wanted to be nothing else and she was proud of it. I am so proud of her for that. She was extremely gentle yet strong and fiercely protective of her family. She knew Jesus well and walked with Him.  She was creative and thoughtful, sacrificial and prayerful. She reminds me of the Proverbs 31 woman: a passage that contains this crazy list of seemingly unattainable virtues of a Godly woman, yet she effortlessly exuded so many of them at once. She bravely faced endless surgeries and scary diagnoses with expectancy that God was going to be glorified through her struggle. She shared her story with the doctors, nurses and everyone she came into contact with.

Every day that passes as a parent I am reminded of how special she was.  There are so many ways I wish to be like her. There are so many times throughout the day I wonder how she would react, how she would respond…so many ways I miss my mom.  I miss her company.  When I became an adult, she became my friend. My heart still aches when I see a mother and daughter out spending time together because I know I’ll never experience that casual closeness of running errands or grabbing lunch with her again. I miss her guidance. She gave the best advice and knew how to speak truth in love. She was an amazing wife. By her example, she taught me how to truly love my husband. I miss her presence in my kids lives. It’s such a tragedy that they will never know her, because she would have had so much love for them. She would have been the first one to offer to hold and rock them to sleep as babies.  She would probably be volunteering in their classrooms and planning all of their parties.

It’s been 11 years since her death, and I still can’t believe she’s gone. I felt numb for so long, void of highs and lows. Depression robbed my every effort to grieve my mom’s death in a productive, healthy way. I knew as I was just going through the motions of life that it was wasted time, yet it was so difficult for me to climb my way out of the depression. It took many years before I was finally able to deal with the emotions of loss, confront them, and heal from them. God’s grace has been faithful to cover me during those tough years.

How do you think she would feel about your decision to get a double mastectomy?

I think being supportive would be an understatement. She was an excellent caregiver and she would have probably moved in with us for a month to take care of me and my family! I’m sure she’d also say, ” I wish I would have done that.”

How did your dad respond?

He was excited and a bit relieved. My dad feels that same way my sister and I do, that breast cancer was almost inevitable, so he was extremely supportive. My dad flew out for 5 days to stay with us and help take care of me after my surgery. I’m sure it was difficult emotionally for him to be back in a caretaker role. It probably brought back some painful memories of doing the same things for my mom. I know he enjoyed being helpful though, and he was helpful. I needed that.

Continue reading Cortney’s story in Part 2… 

*Cortney is a wife to Ryan, a mama to Kieran (9) and Cale (7) and her favorite drink is Sangria. 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.