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.

It’s not like it’s brain surgery (we did that already).

Because I did have brain surgery, remember? How could one forget…

After my appointment with my breast surgeon, Rob and I went to lunch to talk about all the options. Each option isn’t great because they all have their risks.

It’s kind of like when I had brain surgery, the options back then were:
1. If it’s an aneurysm it could burst and you’d likely die OR
2. If it’s a tumor it could grow and make surgery harder.
Annnnnnnnd we’re not sure if it’s an aneurysm or tumor, so good luck with your decision!

Saturday
At my appointment on Saturday, I got my options and they felt just like my brain surgery options.

Option 1
Lumpectomy and 20ish rounds of radiation. Combined with one of two different medication options. Both are 10 years long. One has a side effect for an increase in uterine cancer and blood clots. I could have my uterus removed if I don’t want to deal with that. I’ve never been pregnant and those words delivered a direct punch to my gut because that means, I never will be. The other pill puts me into menopause but then I’d get a bonus shot every month for 10 years to block catapulting me into menopause.

Option 2
Due to my family history of breast cancer on both sides, along with other kinds of cancer, a double mastectomy is on the table. No pills, no radiation, unless, the pathology shows the cancer got outside of the ducts and then we could be back to option one or chemo (is this for real?). We won’t know if the cancer got outside the ducts until about seven days after surgery when the pathology comes back. The surgeon said if we take this option she doesn’t believe we’ll revert to option one or that I’ll need chemo, but she’s telling me every possible scenario. It’s great we caught it so early, this is where you want to catch it, but the cancer is grade 3 meaning it’s feisty and likes to spread fast

Option two sounds harder to recover from up front, recurrence is slightly lower, and the side effects from option one don’t exist. But then there’s potential breast implant illnesses (feel free to google this on your own). My surgeon said those were from a particular kind of implant and they aren’t used anymore.

OR, I could basically have a tummy tuck, and take my little stomach pooch from the massive guacamole, margarita and Mexican fiesta I’ve been having for many years, and reconstruct the girls this way. But my surgeon, she’s so kind, she said I don’t have much to work with in my tummy area so she’s not sure if this is a real option for me, and the recovery with this is a lot harder than straight reconstructive surgery.

To clarify:

I have stage zero cancer, because it hasn’t left the ducts where most breast cancer starts. On the grading scale, grade one is lazy and lays on the couch, grade two likes to take a walk and grade three likes to run. The pathology means my cancer cells want to go rogue, and quickly.

The fact that I have cancer felt very real after my Saturday appointment. Writing the sentence, “I have cancer,” is hard. Stage zero made me pretty glad, like I had CancerLite, a miniature version of cancer, but that thought was wrong because there’s no such thing. Learning about the grades, the options, the length of medication required, the side effects and recovery times made me cry a lot. These are hard decisions and time is critically of the essence. Since this is grade three, a surgery of some sort will likely happen within a month.

The weekend was filled with a lot of researching, talking, crying and weighing the options. But clarity came on Monday.

On Monday I got my blood taken for genetic testing of 34 genes and markers (including BRCA 1 & 2) those results should come in a couple of weeks. The reason to test so many genes is because genetic testing has become a foundational tool to help determine the best course of action and there is an association for certain genes with secondary cancers.

Over the weekend I prayed that the right option would be very clear and I discussed with Rob that I was terrified of making the wrong choice. To be honest, I was leaning toward option two, but my meeting with the medical oncologist and radiation oncologist on Monday really solidified the course of action.

The oncologist said not to wait on genetic testing for an answer, to do a double mastectomy with immediate reconstruction as soon as possible. He said since this was caught so early and isn’t invasive yet and combined with my age, he would actually be more concerned with the long term effects of radiation, which I didn’t even think about. Radiation not only affects the area you’re targeting, it will also affect everything in the field of range too. Radiation is also linked to other forms of cancers that won’t appear for 20-30 years, so not only would I experience the short term affects of radiation, but long term effects too. There are certainly so many reasons to use radiation including being in a later stage of cancer, having a more aggressive kind of cancer or being older, all are excellent reasons. But for me, it doesn’t appear to be the right answer. He encouraged me to be done with this in 2019 so that in 2020 I can also heal emotionally and mentally.

Monday provided the clarity I was praying for and a solid course of action to follow. I am very thankful to have caught this so early and hopefully only one surgery will be necessary. But, I know that with cancer things can change quickly and I’ve been told to be prepared for that.

Thank you to the squad of people who have sent messages, texts and who have called, there are SO many of you!! You guys are AWESOME. I am continually asked how can I help? Here’s how: if you’re friends with my husband, check on him. Remember to always check on your “strong” friend. He’s that friend, so please check on him. And thank you to the guys who already have. Our friends are so awesome and I couldn’t ask for a better bunch.

Keep the mood light but also keep it real. Shortly into our marriage I remember moving my sister in law from her extended stay into her new loft downtown. Our family went to the storage unit and there was just so much to move. I kept the mood light, I made up cheers (it’s moving day, it’s moving day…we’re moving out of the extended stay!) complete with moves and high kicks. I wanted to keep everyone’s spirits up as they were lifting heavy boxes. Rob and I joked, that if I’d keep the mood light, he’d kept the workload light. It’s been something funny we’ve said to each other for 15 years now. Cancer is obviously serious, but please don’t be afraid to talk to me or Rob, act like you normally would. But also, I can’t be a champion of vulnerability and expect everyone to only keep things light and fluffy and not be real. If you want to cry, that’s OK. I don’t expect everyone to show how strong they are so I don’t cry too. And maybe that’s a lot to ask, keeping it real when it needs to be and keeping it light when it feels right. But that’s how everyone can help.

Work – Obviously I’m going to talk about work. I can work. I am working. Did you see my shirt in the picture above? I have a great team who has my back. They had it during my brain surgery and they’ll have it during this. Plus, I know that real estate contract like the back of my hand and I can negotiate in my sleep…I mean c’mon, it’s not brain surgery guys. I want you to be confident in using me and continuing to refer business to me.

I feel like I have to address work for a few old reasons and one new reason. When Reagan had her crisis, some people didn’t want to “bother me” with business, some people said I straight up wasn’t capable to handle my new complicated home life and my career. The Mighty featured it on their site and you can read about that here. But I’ve proven time and again that I can handle my life, be vulnerable about it on this blog and social media, and sell real estate full time to support my family. It’s because of my previous experience that I kept my brain surgery to myself until after it was over. But that’s not how we’re supposed to do this life! We’re supposed to be there for one another and we really shouldn’t judge what someone is capable of. I’m here to tell you, I guess for the third time, that I am capable of going through hard things, including breast cancer, and doing my job effectively.

As my friend Rachel put it, I’m a special needs mom, I’ve had brain surgery, I’m beating breast cancer and have sold about $100 million in real estate. What’s your super power?

xoxo
AM