My BRCA1 Journey & My Freedom

  When I was told in 2021 that I had the BRCA1 mutation my husband and I began a hard journey of trying to determine what the next steps should be. The doctors were clear that I should have had surgery 4 years prior. The radiologist who did my first

mammogram legitimately told me, "when you get cancer you'll have screenings more often." The cancer centre called me and a file folder full of "Your Journey Through Breast Cancer" information suddenly appeared. I didn't have cancer but you would have thought I did. 

    When faced with the facts of this diagnosis it was very easy to become ruled by fear in my decision making. I had lost multiple friends to cancer and had a desire to do whatever it took to ensure that I did not leave behind small children and a widower husband.

    Over the years I have had to grapple with what decision was right to make. There are two main trains of thought that feed into this decision and neither seemed to sit right with me. 

    The first train would say, "Your body, your choice. If your source of internal strength is strong enough then do it! Make a choice that will ensure that you will be around to live life to the fullest, watch your babies grow up and have their own children! Don't allow anyone to take that from you."

    The second train says, "If God is in control over everything and has planned for you to get cancer then nothing you can do will stop that. Choosing to have this surgery done is an attempt to circumvent God's plan and is a choice to live in the fear of 'what if.' Should you proceed with pushing your will for this surgery you will find that God will use it to show you just how powerful He is and how lacking your trust is."

 The first perspective encourages a complete self-reliance while the second warns of learning the hard way that you cannot rely on yourself for anything. May I present to you, dear reader, a third perspective? Both so to help advise those who may wrestle with a similar choice in the future and so that those who watch my journey would better understand my perspective. For those who don't wish to read to the end, here is my thesis:  

    Every human being is given the freedom to make choices for themselves and others. The key is not in the human's wisdom but in the human's dependance on God for direction. Any time a human being walks humbly, relying not on their own perceived strength but on the overflowing empowerment from the Holy Spirit, that human being will find that their path becomes well lit to determine the necessary next step. 

 In addition, that human can rest knowing that God will not lead them into evil or a grenade of destruction. Those who live in "fastened freedom" will not find that God is going behind them picking up shattered pieces in order to turn them into good. Rather, they will find that their gentle God shepherded them kindly, provided for needs they didn't even know they had and nourished their frail humanity in each moment. 

So, you ask, how did this practically play out for me? It looked like a day to day struggle of trying to take control and then humbly fastening my desires to God's leading. It looked like a year to year grieving as I wrestled through how this decision would impact my life and the lives of my family. This surgery is no small thing. I've been completely reliant on others for food, personal hygiene and I currently have a live in "adult sitter" in my sister. As the weeks go by I'll have more mobility but will still be dependant. Thats not even looking into the future and the ramifications this will have on my personal self-image, my marriage and the lasting imprint this will leave on my children. I cannot count the hours of counseling that led up to this. Were there days when my decisions were shaped by fear and a desire for control. Absolutely. Were there days when I truly thought I could muster up the strength to do this on my own and march through this war based on my own self-help capabilities? Yep. But was that what shaped the entirety of my decision? No. 

In May of 2023 I finalized plans to have my surgery and signed the waivers with two surgeons to make this happen. I was assured that I would receive a call in September with a surgery date for December of 2023. However, when October rolled around and I had not received a call I contacted my surgeon. To make a long story short I was told that the Canadian health care system does not operate in a preventative manner and that my surgery would never be a priority. They could not even give me a time line of 2-3 years because I would always be bumped to the bottom of the list in preference for those who had cancer. The OR could accomodate only 3-4 surgeries per available date and the Calgary Breast Cancer Clinic was diagnosing an average of 3-4 cancer patients every week. I would not receive surgery unless I got cancer and my best shot was to go to the states for surgery. 

 That phone call was an example of when my own desire for control took over and my fears drove my thoughts. I said goodbye to the receptionist with a quivering voice, slumped into the corner of the room and sobbed hysterically. I placed a call to my husband who picked up only to hear me hyperventilating on the other end of the phone. Through sobs and broken sentences he grasped what had happened and his first question was, "have you prayed about this?" Of course I hadn't so I hung up, went to my prayer closet and just poured out all the fear, frustration and human logic of the situation to God. I looked up from praying to see a sign I had hung up on my closet door with the words, "And if not, He is still good." I looked down at my hands and saw how empty and weak they were. My weakness led me only to a crippled hyperventilating freak out in the corner. The option to fasten my freedom to a God who (theoretically) had infinite power seemed like a pretty attractive alternative. Especially when this God has tangibly shown me and countless others throughout history that He is real and delights in me. I took a deep breath and exhaled with a spirit relinquished to God's plan. Apparently He was shutting the door on this surgery and I was sure that whatever that meant for my life it would be good. Not just for me but for everyone around me. He could have my open hands both physically and metaphorically.

Knowing that the nurses best suggestion was that I pursue surgery in the states I understood that the possibility was likely nil. However, I researched and contacted every international insurance agency for expats that I could find. The resounding answer was that my pre-existing condition removed my qualification for insurance. As a result the surgery would cost in the ball park of $30 - $70,000. In addition, should I have any complications requiring intervention upon my return the Alberta Health Care system would charge me out of pocket. That door was firmly closed and it appeared that my surgery would not happen. 

We walked through the weekend processing this information and I found myself filled with great peace despite the continued emotions of a new form of grief. Monday morning arrived and I was fully entrenched in the olympic sport of herding my three children out the door for a playdate. I grabbed my phone and discovered I had a voicemail from the secretary at the surgeon's office requesting me to call her. Ok kids, I don't care if you are indoors dressed like the abominable snowman, you can stand there and sweat while I call her back. "Oh Hi Rachel!" The friendly voice responded upon answering. "I was just calling because I have a surgery date for you for January 17th!" I stumbled over my words in shock and then asked, "Um...you have the right file right?" Apparently this amazing receptionist had contacted both surgeons over the weekend and had advocated for me. As a result the cancelation that I had wrestled with all weekend was not only prioritized but was happening in 6 weeks! Aaaaaand, UP the rollercoaster we go!!! However, this time I had a much clearer understanding of exactly where my heart stood in all of this. Whether the precipitous drop on this roller coaster was surgery, another cancelation or something different altogether, I'd be ok because my choice was fastened to my God's leading. 

For 6 weeks a crew of friends and I prayed that God would cancel the surgery if it was not what would be best. I literally did not know for certain if the surgery would take place until 18 hours prior to being wheeled into the OR. Yet, what I did know for certain was that I had been leaning into my God with hands open and ready to be filled with whatever He had for me and because of that the outcome would be astounding. Did that mean I didn't feel fear? No. Did that mean I never tried to take the situation back into my own hands? No. But it did mean that I knew beyond a shadow of a doubt that the overall decision was not being driven by my own misguided self-reliance or arrogant attempt to override God's plan. I knew that we were walking this hand in hand. His strength, guidance, peace, and clarity linked hand in hand with my obedience to put one foot in front of the other and keep looking at Him with those big childlike trusting eyes. 

If you came to me today and asked me how to make a decision this massive I would say this:

 First, Consider what you are able to do from a human perspective and embrace the amazing options that God has provided for you. He has gifted scientists with the clarity to know the body to some degree and has provided men and women to help you. God has given men and women throughout history the ability to create surgical tools, machines and methods to intervene in the broken condition of the human body. There are medications available to help you survive conditions that 100 years ago would have assuredly killed you. Why? Because God unveiled the eyes of scientists to make break through discoveries specifically for your sake. Guys, this is an incredibly gracious, loving and kind God! 

Second, use the Bible (since it's God's letter to you) to illuminate the path that this kind God is leading you on and day by day put one foot in front of the other. Let the truths of God's character and faithfulness found therein be a lamp to your feet and a light to your path (Ps 119:105).

If you google the aforementioned quote about God's goodness you'll be told it comes from the Bible and is found in Daniel 3:18. Spoiler Alert: It's not. However, I think it beautifully sums up the experience of followers of God since the beginning of time. No matter the situation, the fears or the unknowns if you fasten your freedom of choice to the God who made you, adores you and has beautifully defined your journey you will find that He is still good whether or not the outcomes look the way you think beauty should look.

Dear friend, 

    If you stand facing the terrifying unknown of tomorrow and are wrestling with decisions that feel too big for any human to make I want to encourage you. You can't do it on your own. Every feeble attempt you make will leave you reeling and feeling more inadequate and unsure. No matter how much you try to help yourself you'll always find yourself feeling more and more uncertain of your certainty. Instead slip your hand into the hand that made you and identifies with your pain. Look into the eyes that assure you, "It's good" and follow freely with the assurance that God won't lead you into a trap. 

"Which one of you, if his son asks him for bread, will give him a stone? Or if he asks for a fish, will   give him a serpent? If you then, who are evil, know how to give good gifts to your children, how much more will your Father who is in heaven give good things to those who ask him!...If any of you lacks wisdom, let him ask God, who gives generously to all without reproach, and it   will be given him. [For]Every good gift and every perfect gift is from above, coming down from the Father of lights, with whom there is no variation or shadow due to change...Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of   your faith produces steadfastness. And let steadfastness have its full effect, that you may be perfect   and complete, lacking in nothing...For the Lord is good; his steadfast love endures forever and his faithfulness to all generations."

Matthew 7:9-11, James 1:2-5, 17, Psalm 100:5

Until Tomorrow, 

Rachel