Goodbye 2019. Goodbye Cancer.

On December 12, 2019 I rolled up to the hospital, not ready and not completely willing, to check in for surgery.

After being diagnosed with stage zero breast cancer in October, 2019, it felt like surgery was light years away, I even tried calling to move it up, but after Thanksgiving the date flew toward me like a bullet train.

Somewhere between ten years ago when my mom was diagnosed with breast cancer and when I was diagnosed, I made a decision that if I was ever diagnosed with breast cancer, I would get a double mastectomy and reconstructive surgery, with implants. I’d say it every so often to make sure my family knew this would be my decision. And one day, the decision was at my door step. There’s something to be said for making a decision in advance because I knew I was resolute. But even though I knew this was the right choice (for me) and being so grateful to have caught it so early, I also wasn’t prepared for how I’d feel as a result of my decision.

The days leading up to my surgery, I would break down in tears. Sad that my body would be changing, that my girls would be leaving, that I’d probably lose feeling in that area, fear of what it would look like, feel like, terrified of the pain, and how this whole experience would affect my husband and family as it unfolded.

My anesthesiologist, Dr. Luke, prayed for me with my family before my surgery…it was such a small part of the day, but the effects are everlasting. Our interaction was probably 10 minutes out of the entire day, but I’ll never forget how kind that man was to pray for me.

Rob took this picture right before I went back for surgery. You can see the markers on my body, and my surgeon had a whole bunch of markers on my chest too. It’s a surreal feeling to have your body drawn on because those markers are where they will cut, and where they will take hopefully every last cell of cancer. Before going back I just cried and cried. It was happening, there was nothing I could do. I had cancer, I wanted to make sure it was removed from my body completely and I wanted to do everything possible to not have radiation or chemo, and I felt lucky that eliminating chemo or radiation were real possibilities for me.

Unfortunately, it feels as though cancer has affected almost everyone in America in one way or another. And how one determines to fight it is a very personal choice. In this Instagram filtered society we’ve built, I’ve found it common that people want whatever choice is made to have a bow, to have a happy ending, to have no pain or struggle. It just doesn’t exist.

As I’ve been sitting in a lazy boy chair for the past two weeks, thoughts have swirled in my head.

“No one cares.”
“People don’t want to hear about this, Anne-Marie.”
“Your family is such a downer, how many more bad things can come your way?”
“It’s the holidays, don’t blog about how hard of a time you’re having. It’s such a buzzkill.”

It’s true, infertility, medical trauma, special needs, brain surgery and breast cancer are all really hard roads to walk. One is enough, five is like some form of reverse lottery. Why is not a question I ask anymore. I can not control my card deck, only the way I react to it.

The first seven days post surgery I was in so much pain I didn’t think I’d ever be able to move the same again. I’d cry and Rob would pick me up and tell me it was temporary and that he was so sorry and sad I had to go through this. He’s been an incredible trooper taking care of me.

The physical pain is certainly one of the bigger aspects of having a double mastectomy, at the worst it felt like a herd of Charlie horses ravaging my chest cavity, or an entire army on my chest when I’d try to sit up. In the hospital I described my pain as an 8 out of 10, and the only reason I didn’t label it a 10 was in case it got worse!

Physical pain is obvious, but the mental and emotional pain are equal contenders. My confidence was wounded as much as my body. Satan man, he just tries to keep us down any way he can, I know this is only temporary, but it’s really, really hard and I can’t sugar coat it or down play it.

I’ve read a few other breast cancer blogs and stories but for me, they missed conveying the true loss that I’m feeling. Everyone handles this differently, but at the ground zero level of a double mastectomy, it’s one of the hardest things I’ve ever gone through in my life, certainly equal to if not more difficult than brain surgery.

I write this all out for someone who might find this helpful if they’re in this situation themselves; or if you have a friend who has to go through this, you know all the devastating nooks and crannies lurking about. It is crucial to have loved ones, family, friends, children and your spouse to be as accommodating and helpful as possible.

For the first 10 days post-op, Rob set five different alarms on his phone for the five different medications I’m on and would wake up at least twice a night to help me. He emptied the two drains that were stitched to my body, twice a day, and logged how much fluid came out. It’s not glamorous, it’s not supposed to be, it’s sacrificial love. He’s helped me out of my lazy boy countless times in the middle of the night, tucked me in to my lazy boy (which has been my bed since coming home), puts socks on my feet and carefully drapes blankets over me. One night at 4 a.m. he moved a pillow under my arm about 25 times, without complaint, until I felt like it was relieving the stress of my arm just being at my side caused to my chest.

For all the bad and hard things our family has had to go through, I’ve learned what we are made of and the depth of the love my husband has for me. He hasn’t complained, he hasn’t been annoyed, he’s gently helped me with everything I need, and we have actually laughed so much. You know the saying if you don’t laugh you’ll cry, well since I’m already crying it paved the way for more laughter and inside jokes. Since my body is going through its own healing and trauma on the way to an amazing new set of girls, I keep reminding him that I have a great personality.

When I reflect on 2019, the middle part of the year over the summer was hard. Reagan was struggling. While her expressive communication and talking was happening more and more, that was combined with new impulsive behaviors and difficulty handling her emotions when she didn’t get her way. Talking was the gift we have always wanted, but it does come with challenges and new things for her to learn, which is all wonderful, but also a challenge that many parents have to overcome if their child is blessed with the ability to talk.

About a month after school began, I felt like we were getting into a better groove with our family and Reagan. That gave us about a month of security “being in a groove” before this diagnosis. Life constantly changes and our family seems to experience massive swings. In each of the hard seasons of my life that I’ve been privileged enough to see my way through, this truth continues to root itself in my life.

“Look here, you who say, “Today or tomorrow we are going to a certain town and will stay there a year. We will do business there and make a profit.” How do you know what your life will be like tomorrow? Your life is like the morning fog—it’s here a little while, then it’s gone. What you ought to say is, “If the Lord wants us to, we will live and do this or that.” Otherwise you are boasting about your own pretentious plans, and all such boasting is evil.” – James 4:13-16

These words, “How do you know what your life will be like tomorrow?” And comparing our lives to the morning fog, fleeting, puts my struggles into perspective, they are always temporary, around the corner I will find hope, I always have. Always, always, always.

God allows hard things to happen, just like he allows amazing things to happen. And God has regularly given us wisdom when we ask for it and helped us navigate through our pain. Pain is not avoidable and wisdom is not immediate, we’re not perfect, but he is powerful. Years ago the decision I made if faced with breast cancer was made before I learned the humbling truths through our reverse lottery winnings, but this message was a flowing current through each season, “If the Lord wants us to, we will live and do this or that.”

I’ve learned that:
1. I don’t need every answer, I can’t have it anyway.
2. No amount of planning on my part will change God’s plans for my life.
3. It’s OK to cry when my expectations don’t line up with my experience.
4. I know how much I can trust God, and I trust that his plans for my life are higher and better than mine, even though it might not look like that on the surface.

As I close out a wild 2019, I close it knowing that all of my cancer is gone. The pathology was clear and I don’t need radiation or chemo. I’m going into 2020 with a lot of hope. There’s been so much groundwork that has been laid in my personal life that has grown out of tremendous hardship, those roots are solid and I’m ready for big blooms in this new decade. I continue to remain hopeful and cling to our family’s motto: Never backwards. Always forward. Always.

When people refuse to work with special needs parents

When our daughter Reagan had a metabolic crisis at 13 months old, a customer in Rob’s agency asked a hard question:

“Oh, he has a special needs child? Do we need to take our business somewhere else? Will he be able to help us?”

The employee on the phone handled it with such grace and truth, “Well sir, I’m helping you now, and we have three other people who can assist you as well.”

If it wasn’t bad enough for someone to say that, learning they were missionaries was icing on the cake. Didn’t Jesus talk about how you treat the least of those, you treat me?

Both my husband and I have our own business, and we regularly blog here to provide updates on our daughter. We do it to: 1) give glory to the only one who is deserving of that praise 2) offer other families, special needs or not, encouragement through our life 3) provide a voice for the miracles God is performing in Reagan’s recovery and 4) ask for prayers when needed.

I have wondered if blogging about Reagan could cost me business as a Realtor. Not only has Rob had to hear about one of his customers concerns from another employee, I regularly have to squash things like, “are you still working full time, you still doing the real estate thing?” it’s not a hobby. Or correct people when they say things like, “hey, I’m sorry to bother you, I know you’re busy with Reagan…and I just read your blog…so reply when you can…”

listen to me

I blog because I want to, it’s easy for me to type my feelings out, people want to know how Reagan is doing, how WE are ALL doing. I’ve blogged and then received messages from people about how God put it on their heart to pray for Reagan talking, and the blog revealed why God laid that on their heart. I’ve blogged and received thank you texts because our family was on someone’s heart and they were unsure how to pray for us, the blog revealed specifically how they could pray. God uses this blog and I’m not going to stop blogging because it allows readers to witness the miracles God is doing in Reagan’s life. I feel called to write and to be honest in our story and special needs journey.

I sell real estate (and have been doing so successfully for eleven years) because I want to, because I’m good at it, because it allows me to financially provide for my family. Rob has owned his own business for seven years and has been a licensed insurance agent, selling insurance for seventeen years. Yes, seventeen.

Unfortunately, we’ve both lost business due to the openness in our life journey. I’ve worked with past customers, people who I’ve successfully guided through previous transactions, who have written testimonials or even done testimonial videos saying they would always use me, use someone else. I had one seller hire me and tell me she was so impressed with my ability to sell real estate and care for Reagan…only to call another agent in my office and complain about the fact that I have a special needs child and specifically name and blame my child for the reason her home (that was overpriced based on 20+ showings of feedback) wasn’t selling. I’ve coached sellers, for over a year prepping them to put their home on the market, up to the point of signing paperwork, only to be given a one line, “we’ve gone with someone else” email and a refusal to respond asking what it was that made them choose someone else.  I can’t help but think, it could have been the blog I just wrote that said I’ve been battling an insurance co. for a month trying to get Reagan’s medications.

she probably doesn’t have the time. he’s not in the office today? must be that special needs child of theirs. let’s find another insurance agent. let’s find another realtor…

To me, it’s like saying how can this person be fun and serious, aren’t they only capable of one?  They surely can’t do both.

People tend to look out for number one…the crazy thing though, is that Rob and I are always looking out for our customers, treating them like family, guiding them, coaching them and helping them make the absolute best decision for their family.

It’s especially hard to lose a client who also knows the details of our life. Who knows that a sale would go toward benefitting Reagan’s care, toward therapy. I don’t want pity customers, I don’t need those and neither does Rob. I do a good job and have continued to be a top selling agent in my office, even after Reagan’s crisis. Do I need to post my numbers here on this blog? No. (But if you want to talk with one of the 70 families I’ve worked with since Reagan’s crisis, let me know). Because people who know me and know Rob, especially those who have worked with us, know that we are hard workers, our customers are satisfied and for the most part, they are 100% loyal and come back many times over to hire us.

But this blog is a reality check…there are those who in their hearts know we would do an excellent job, but choose not to work with us due to the other demands on our life, and that’s unfortunate. That’s not a condition of my heart though, it’s a condition of theirs. God has always taken care of our family, in every way.

I tried googling things like, “losing business when you have a special needs child” and the like, but I didn’t find anything that really resonated, so I wrote this blog and I know it will resonate with other families. I know one particular family whose son just had a devastating brain stem stroke and there are fundraisers all over town to help in his recovery. The organizer, who provides daily updates, has had to say multiple times that yes, the father, also a Realtor, is still working. Why would he stop at a time like this, when his family needs him?

Are things demanding when you’re a special needs parent, you bet. That doesn’t make us incapable of doing an excellent job at our job. Here in our house, we continue doing an excellent job for our clients and customers AND we are doing our very best to raise our child, who has additional needs. We want to let you know, we can do both.

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