Spiritual Senses        

"The last month has been a bit of a blur, but I figured it was time for an update. I'm in the waiting place right now. I thought I would hate that. And there are moments it's hard if I'm honest. But it's actually been so beautiful in ways I was not expect.

I stopped taking my medicine in the middle of January. To be honest, I was ready. I knew medicine was not the means to an end for me. It just meant endless 3 week cycles of misery. Sick stomach, diarrhea, and endless pills that were not curing me, just keeping me alive. And while that might be good enough for someone else, I knew it wasn't meant to be my story. I also knew that it was only keeping me alive until it was time for a new route, so every time I got a good scan it wold just be 3 more month of medicine and another scan to see who things were looking. Eventually it wold look bad again. It was only a matter of time. So I told Brad in January I wasn't hoping for a good scan, which was news to him. 

When it was apparent things weren't taking a positive turn I quite taking all my meds. I was super excited to have an appetite again, and to start feeling well, but while medicine wasn't making me feeling WELL, I didn't account for the wait it wasn't making me sick. So almost immediately after getting off my meds I got much more tired, and it definitely took awhile for my appetite to come back. It sure it back in full force now, thanks to my steroids and several months of chemo pills, but it definitely took some time. 

No only tit I start feeling worse, but my eye almost immediately started having problems. I basically only have one good eye now. When that happened I got pretty bummed. I know there is a plan and I will get through this, but the waiting suddenly seemed much harder when I lost an eye. No more driving (at least not for now. I don't really feel safe driving myself or my kids). I can't work on puzzles. It' shard to read, and for awhile it was really hard to do just about anything. I felt like I'd been given a handicap I could totally live with, and then had it ripped out of my hands. But, after my initial setup I realized that I'd been given a gift. Every time I've been in the "waiting" period, I've found a thousand ways to fill that time. And actually, I rarely accomplish the things I want to. The days get filled with all sorts of things."

This is a post Rachel didn't finish. I am keeping it the way it was. Preserved as a memory of her. 

What We All Have in Common

I've been thinking a lot this past year about 3 men that many are familiar with. But though I knew their stories well, I saw them differently this time around. First is Naaman, then Elijah, then Simon Peter. 

There is so much I have known about the story of Naaman. How he was a celebrated leader, was asked to do something easy, was angry, did it anyway, and was cleansed. It's all beautiful. So many great lessons. But one of the first things that came to mind this time was, what if those with cancer had to leave their families and go live together in their sickness? I realized that it didn't matter how great of a leader he was, how rich and powerful he was, how much the king loved him, or what he had accomplished. He had leprosy. And if that didn't change, his whole world would. Regardless of his accomplishments and wealth, he would be a leper. That's it. His future would have changed dramatically.

Then there's Elijah. This year when we learned about Elijah was the first time I realized his experience with the still, small voice came after he brought fire down on the alter from heaven. He literally performed one of the most discussed miracles in the bible. It's almost funny how hard the priests of Baal worked to get an answer, and Elijah not only got an answer, but he flooded the alter with water so the only fire that could be lit had to come from God. But after all that, he still felt alone and he left, prepared to die. He KNEW God was part of his plan. He'd watched it. He'd provided a miracle. And he still doubted the Lord's ability to save him from the wrath of the queen. So God came and showed him, and reminded him that his answers are often quiet, and maybe not as grandiose as a fire from heaven.

Lastly of course, is Simon Peter. Again, I am very familiar with his story, and the story of him jumping out of the boat to walk on the water. But right now I am also very aware that the world is loud. Medically, I know my odds. They are not good. In fact, they are pretty terrible. Scientifically, I know how cancer works in the body and especially in the brain. And it's scary to defy that when the odds seem to be against me. But God is not. And as he asks me to proverbially walk on water, I am reminded that Peter was a fisherman. He worked on the sea every day. So he was very familiar with the water, the sea, the tide, the ups and downs of a life working in that environment. So how big must the waves have been to scare him? How hard must the wind have been blowing? He was ALREADY walking on the water. But as he looked around and could see what was closing in on him, he forgot that he was already doing it and that Jesus was with him. He just remembered that the sea was dangerous, and that's what he saw around him. I don't pretend to know what was happening that night. I just know that thought reminds me just how loud our fear can be when we are trying to listen to that still small voice. 

I couldn't sleep last night as I thought about these 3 men. And what do they all have in common in my story? First is trust. Trusting God is as good as He promises He is, and trusting His plan for us individually. Not every leper was healed, but the Lord had more for Naaman to do. Elijah and Simon Peter both had missions and the Lord helped them get through their hard and learn to trust.

Second, all of these men had their doubts about their own circumstances. Naaman thought surely there should be a more grand expectation of him. Elijah thought his miracles were done and there was nothing left. And Peter saw the greatness of the sea, and forgot the greatness that had literally allowed him to do something impossible.

I have seen God work the impossible. My mom was on the ECMO (Heart/lung) machine to keep her alive. She was on it until the very last day the nurses said someone could "safely" be on the ECMO. She was in the hospital for 3 months because her journey wasn't about an immediate miracle. But she came home. She healed. And I know that wasn't just good medicine. Over and over as I watched her journey I saw God's hand. At one point a doctor told my dad that they needed everything to go right and nothing to go wrong because she was still very sick. Things definitely went wrong. But she is healthy and thriving because her journey wasn't over.

My aunt was on life support and everyone had given up on her. Two months later she was at Disney World visiting us. And honestly, I have never seen anyone so bright-eyed and bushy tailed after days at Disney. You would never have known the journey she had been on just a few months before.

 

Those are just the miracles I've seen on my own journey. I also know that I shouldn't still be alive if it weren't for miracles. I probably wouldn't have made it through the first night we called the ER if our good friend hadn't been in the right place at the right time to get us the help we needed. And to know how dire my circumstances were.

We've also all seen the miracles that come when we don't get the answer we're hoping for. Or the tragedy. Sometimes it's hard to not get what we think we want. Though honestly, I've learned that I don't think staying is the miracle. I think where we will all go is a MUCH happier place. But I want to be here with all those I love. I want to share the journey--the good and the hard--with them. And I want to do His will. I believe with all my heart in His plan. So I will keep looking to Him and walking on the water if that's what He wants. It's not easy. But I'll keep working at it. 

Spirit lead me where my trust is without borders
Let me walk upon the waters
Wherever You would call me
Take me deeper than my feet could ever wander
And my faith will be made stronger

In the presence of my Savior

Song by Hillsong United 

The Journey

 It feels like I should be done by now, right? At least out of options. I keep thinking I've hit that point and then another option presents itself. But I'll get to that. And don't get me wrong. It's just that I believe this isn't it, and medical treatments for cancer aren't so great.

First of all, I realized maybe I should share what type of cancer I have. I have followed someone on social media that recently shared she has breast cancer. It drives me NUTS that she never. says what kind of cancer she has, because it matters if you know anything about cancer. And then I realized I never shared that either. So, in case you are wondering, I am Her2 Positive (HER2+), and here are some things you may not know about cancer unless you've been very directly involved:

• There are different types of cancer. With breast cancer it's typically tied to hormones. HER2+ is a protein and it has receptors, just like estrogen or progesterone cancers have receptors. There is Estrogen+ or Progesterone+ or Triple Negative (which is the absence of all hormones). Those aren't the only kinds, but they are typical. And treatment depends on the type of cancer and the type of hormones involved.
• My cancer has metastasized to my brain, so I now have cancer in my brain, but it is actually breast cancer that has moved to my brain, not brain cancer. While there are enough similarities it kind of doesn't matter, it's still not the same thing. 

When I first found out I had Her2+ cancer I was told it was good news because it's very treatable. I knew that it was aggressive, but that it used to kill 95% of women who had it, and with targeted treatments now saves 95% of patients. But what I didn't know is that it's very common to have a recurrence (have the cancer come back) with HER2+ cancer. 

I was diagnosed in July of 2020. After my diagnosis I went through 6 rounds of chemo (once every 3 weeks) and then had a mastectomy in January of 2021. Radiation was also part of my plan but I opted not to get radiation. I wasn't super comfortable with the idea, and I was totally clear. In other words, they took out all the tissue and found no cancer. My Oncologist explained radiation was actually to avoid a local recurrence (cancer coming back in the breast area), and he said they could just do surgery. But it wouldn't help me avoid the cancer coming back anywhere else. Initially I had expanders put in for implants and then learned about Breast Implant Illness and decided that while some women have no symptoms, I'd rather not risk it and I had my expanders removed in April of 2021.

I spent 8 months thinking I was free of cancer, and then in August of 2021 they found 3 spots in my brain that they believed was breast cancer. So at that point I was officially diagnosed with Stage 4 Metastatic Breast Cancer.

Since that time this has been my journey:

• Brain Surgery in October of 2021 to remove the 3 spots
• Enhertu treatments every 3 weeks (a treatment to keep cancer from returning)
• Radiation Therapy on my brain in April of 2022 after finding a spot that appeared to be cancerous.
• Chemo pills that were started in July after finding more spots on my brain
• Targeted Radiation treatments on 9 cancerous spots in November of 2022.

In between all of that have been countless MRIs and other scans to keep an eye on my cancer and figure out what's happening. Since I can't feel what's going on inside, it's really a surprise every time, and waiting is hard and scary. 

Currently I'm on chemo pills which make me tired and 2 of 3 weeks are pretty hard. I have very little appetite and feel nauseous often. The targeted radiation hopefully killed off any existing cancer in my head, though I can't get a scan until after the new year because radiation takes time. Targeted radiation ideally gets just the spots of cancer and possibly just around the outside. So maybe I won't have any cancer in my head soon? But I don't know. And really the chemo pills are the hard part. 

I was pretty happy when I found out there were 9 spots of cancer. Brad reminded me that the optimal number of spots is 0, and while he was definitely right, I had assumed I had SO many more spots. So 9 felt not too scary. That's the crazy world you're in when you have cancer... 9 spots sounds good!

So that's the journey so far. There's been a lot in between. I keep thinking about my long walks in our old neighborhood and the countless prayers I said while walking, kneeling, laying in bed, and driving in the car. I think of all the beautiful blessings the Lord continues to give me, and all the times I've been assured He has a plan. I think of my fear, and the letting go, and I'm grateful for all He is teaching me, even though I don't love that I'm learning this way. 

The Pineapple Experiment

About five years ago, we bought a pineapple and Brad planted the top in a little planter in front of our house. We weren't exactly sure what would happen, but it would at least make a nice little plant. We were not the best gardeners. Everything we attempted to grow was in pots, and we ended up with about 5 green beans, a handful of peppers, a bunch of basil, and one tomato. In fact, the "cute" little caterpillars we saw were actually not caterpillars at all and they ate all our tomato plants. Nonetheless, our little pineapple plant continued to grow. 

From the time we first planted our pineapple we had a baby, moved twice, opened and closed a business, experienced a two-year (ongoing) battle with cancer, and so much more. Through it all, we've just had that little plant sitting on our front porch. And one day, we had a pineapple! I brought Devin home from school sick, and he was feverishly laying on my shoulder when I brought him in the house and he spied it through the front window. He was beyond excited. He came out of his feverish haze long enough to exclaim, "Mom! There's a PINEAPPLE!!" We were all excited our little experiment had worked, and the next day he shared it with our entire family on Marco Polo. 

When we moved, the pineapple plant was the only one we brought to the new house. Between the drive and its shallow roots, it was leaning a little when we got to the house. I had to put it into a new pot, and I wasn't sure it would survive, but I figured we'd give it a try. It didn't seem quite big enough to eat, so I thought I would give it some more time. Then we left for Utah, and I trusted the rain would give it enough water if it would make it. 

The morning we came back from Utah I went out to the front porch for some quiet time. I looked over and the pineapple was gone! Brad had checked on it the night before (which I didn't know) when we got home around 1am. So sometime in the middle of that very night, it was chopped off. What was even more heartbreaking was when Devin announced he was going to check on the pineapple and we had to tell him it was gone. I don't know what happened. I don't understand why someone would take it. I could have given someone money for a pineapple. It was really more about the time we spent, the excitement of m son, and the journey. That was taken away for a pineapple. I don't want to make assumptions. But there was no evidence it was an animal, and the cut was quite clean. 

Ultimately, this post is not about the mystery of the pineapple. It's about what came to mind when I first saw it was gone. As I sat on the porch I looked over at that empty pineapple plant and I thought about the last five years and all that we've been through. I thought about the life we planned for ourselves and our kids. I thought about how we invest in our journey, only to find one day that our plans have been cut down and destroyed. That everything we have worked for is gone. That all the ways we expected things to go changed, and there's no going back. We can't regrow that pineapple. We can't bring back what was taken. And that's just what happens. 

But, we can choose what to do next. I can dwell on the missing pineapple. Or. 

We can plant a new pineapple. Our journey has been beautiful. We learned things during the time we opened and closed our store we could not have learned any other way. It was a journey that was so beautiful. I have learned things about aching, pain, sadness, hidden hard, that I never EVER would have learned if I didn't get cancer. I have been given a chance to be a mom and spend time with my family and live my life because of cancer in ways that I might not have with another illness. Our family has grown and our life has changed in ways that have been so full. 

So, the missing pineapple was an ending. A sad one. That happens, probably more than we want. But, it is also a beginning of the next journey that we invest in, and we get to choose if it's beautiful in the great and the hard. That's what's amazing about life. We always have a choice.

Life, Legacy, and the Journey

One day someone asked me, “What do you want your legacy to be? What do you want your children to know when you’re gone?” As I thought about it, my answer was that I wanted them to know that God is great. And He’s greater than cancer. 

I may not be able to grow plants, but I am really good at growing cancer, and I don’t even know how I’m doing it, but it’s back. And there isn’t really anything left for me medically but prolong the inevitable. I’m taking two different chemo pills, and I may get a few spots radiated to avoid Whole Brain Radiation, but I’m out of any other options. 

If you are thinking that I should try some holistic options, I have. If you think I should get a second opinion, I know what my options are right now. If you’re thinking maybe I should try more chemo, there are several reasons I would say that’s not an option, but honestly the biggest is that until God is done with me, cancer will keep coming back. My body so far hasn’t responded well to medicine. 

Brad and I found some carpenter ants in a pot we had a tree in this summer. We poured ant poison in the dirt, and then moved the pot and covered the ground where we found more underneath. We hoped that we got them and they wouldn’t come back. I realized that’s exactly what we do for cancer. Once we find it we try to kill what we find, and we take out what we can from the source and hope for the best. But we can’t always tell where it’s coming from. They took my breasts, but the cancer had already moved to my brain. And how is it getting there? Nobody can say. Whether you take a holistic or medicinal approach, no one has all the answers. 

I wholeheartedly believe that our bodies are one of the most powerful ways God can talk to us and work with us. We don’t really appreciate what we have until we don’t. I also know that we are all different, so while there is often a “right” answer to our journey, God made each of us, and we are individuals.

Here is the most important thing I believe, that I’ve had a hard time saying out loud: I  believe there is a path for me and I believe I’m not done here. As far as medicine is concerned that is not true. And I’ve often felt like I was crazy. For one, it’s not everyone’s answer. But I don’t feel like I’m meant to stay for me. I feel like I’m not done with what God needs for me to do. So is this scary? Yes. Do I wonder about my family? Everyday. But I know that if God has a plan, and if I’ve misunderstood and that doesn’t include me being here, then He definitely has a plan for my family.

I do feel so grateful for many things on this journey. The biggest is that I’ve been able to live the last few years. I haven’t been laying in a bed unable to be a mom and a wife. It’s strange to be so sick and not feel sick. But it’s allowed me to live. I don’t have a thousand things I feel like I need to check off my bucket list. I’ve lived a beautiful life. I’ve loved so many, and have been loved by so many. And I’m a wife and a mom. I plan to be here to watch my babies grow. But I know that I’m on a journey and ultimately I will see it through, and do my part all along the way.

Land that I Love

 I think I am not a crazy big fan of a lot of things. I don't have a favorite sports team. I don't love a particular band. I definitely lean more to one side than the other of politics, but I like to think I'm pretty open-minded. But I can say that I LOVE the United States of America, and I love celebrating the 4th of July. I still tear up when I hear the Star Spangled Banner and say the Pledge of Allegiance. It doesn't matter how much we struggle as humanity to get life right. We still live in a country that's pretty great. I haven't personally lived outside of our country. But I've known those who do (or have) and most would say we have it pretty great. In fact, I learned that there are people from another country that get cancer treatments at my office, because they literally won't survive if they just wait for their name to come up on a list.

I grew up in a place that knew how to celebrate the 4th of July. In fact, I have gone back to Utah most summers to celebrate with my family. I love all the booths at the Centerville park, the concert and firework show, the beautiful (and sometimes super hot) Utah weather, the parade (and children's parade), the fun run, and the family time mixed in. Utah in the summer is magical to me. It's nice and cool in the evenings and mornings, and hot but dry in the daytime. I usually see good friends along with all my family. I love it. 

When we first moved to Florida I was a little bummed that people don't celebrate like they do in Utah. I still don't really understand. I know it's hot. But in Florida, we know how to handle the heat! But it seems like most celebrating happens indoors, with fireworks at night. Luckily, Winter Garden knows how to celebrate! We went to the children's parade several years ago, so we decided to do that again this year. My favorite quote was when Devin said, "It's really hot, Mom. It sounded fun to go to the children's parade." That morning Brad was sick, I just learned there was a huge fire on the mountain in Centerville, the boys were cranky from being up too late, and my health is not what I thought it would be," so part of me was thinking, Happy Birthday America! What a day this is shaping up to be! But, I wanted to make the most of it, and all those feelings melted away as I listened to someone sing our national anthem and I said the Pledge of Allegiance. I was so touched by so many who came out to celebrate and all chose to walk in the Children's Parade together. Yes, it was hot. But, it was magical to celebrate. 

Later that day we had a little pool time, made homemade ice cream, and joined some friends for an epic home firework show. The boys even got to do some sparklers. I'll be honest, I'm pretty sure sparklers are more stressful to me than any other firework, and I'm not sure who decided it was smart to give kids flaming metal rods to play with, but my kids definitely loved them, so you know, we'll probably let them have some next year too.

I'm grateful we celebrated. I'm grateful my kids see that celebrating our freedoms in important. I love the quote, "Home of the free because of the brave". I'm so grateful for all those who have made those freedoms possible, some from my own family. I want my kids to recognize freedom is important, and we choose it every day. We will never be perfect, but we can keep working on being a little better every day.

The Middle

 I felt like I needed to step away from Social Media and from sharing for a bit. And for the most part, even if I stop in on Social Media I don't stay there. I also am not sure I'm ready to share a whole lot yet. But someone the other day said, "We never hear about 'the middle'. We always hear about how someone's testimony has been strengthened after the fact, or how the miracle took place and what it looks like now. But we don't hear about the crisis that comes in the middle, or the hard stuff as it's happening." (I seriously don't remember where I heard this, but it didn't come from me). 

When I heard this I thought about the fact that I'm not having a crisis of faith. Maybe the opposite. But, I definitely am in the middle (and also, maybe we don't want to hear about the middle until after the fact because we want to know it all worked out. We like seeing the middle as a blip, rather than part of the journey when we didn't know the end of the story). 

I used to run my tongue over my braces as I lay in bed at night, wondering what it would feel like to feel real teeth since it seemingly would never happen, and I realized I'm in that place now. I wonder what it's like to put food in my mouth without labeling it. I wonder what it's like to take my kids to school and not think about what it would be like for them to have another mom. Or my husband to have a new wife. And while I don't stay there, they are real questions that I never thought I would be asking myself.

But even though I wonder about those things, I also wonder what the person in line with me is at the doctor for. I wonder if the car is front of me is rushing off to a hospital or just found out someone died. I smile at the kids who tell me their Ya Ya got the ultimate healing when she died from cancer. I ask them what kind and they don't know because to them it's just "cancer", and I don't tell them that I know a lot more about cancer than they realize. I don't want to be that face for them. I don't tell people that I've had brain surgery and a mastectomy. They can't see that. And that's ok. They don't need to see that. I'm not the only one who's carrying hard. Sometimes it feels less hard than a constant battle with depression, or even daily doses of pain. Ultimately I'm learning to accept my story, and the trickiest part is leaning into what God intended for me and surrendering to His story.

I just read a quote by EE Cummings that said, "To be notbody-but yourself-in a world which is doing its best, night and day, to make you everybody but yourself-means to fight and never stop fighting." I read that in a Brene Brown book, after which she said, "'Staying real' is one of the most courageous battles we'll ever fight."

I've heard some people say they are surprised at what I've shared on social media because it's not everyone else's business. And it's true. So I'm sharing it here and hopefully the people who care will read it. And I was the person that invited 500 of my closest friends and family to my wedding because I love them all. Whether that love is returned, it is genuinely felt. So while I don't want to share my life with everyone, I'm okay with sharing some pieces of me, and saying that I'm afraid to be imperfect. I'm afraid to make mistakes, And I'm realizing that I trust God with my whole heart, but sometimes I struggle to trust myself. And maybe someone else is feeling that too.

I've had more than one friend say, "I'm so impressed with your faith right now. I'm not sure I would do the same thing you have done." Honestly, I've leaned into God because I would do that with anything in my life. So in that way-yes-I'm leaning into my faith, and that is a natural response. But also, it's my life, very literally. It's my kids. It's my family. And where else can I turn? What else can I do? So many that I know would absolutely do the same. And some wouldn't. I don't understand that. Not because I think they are wrong to figure out what gets them through. It is a heavy thing to make choices that literally affects my existence in this world and that would be hard for anyone. But for me, trusting there is a God who loves me is what gets me through every day. It's what allows me to trust that my kids and my husband will be okay no matter what happens to me. If He wants me here, I will be here, But ultimately, He has a plan for them, whatever His plan is for me (by the way, that's way easier to say than it is to live, but I believe it).

All that said, I feel like God has been very direct to me. I believe that He's already performed incredible miracles on my behalf. I probably shouldn't still be alive. Even though I've leaned into my faith, He's also given me VERY direct answers. And that's the biggest reason I want to say that I TRUST HIM. But I have struggled to trust myself, that I will Hear him. And finally, I've learned to surrender. Which doesn't mean I am getting this all right. Sometimes I still try to do it my way. But I've learned to hold onto the plan He has for me. I've been learning about the Exodus and one thing I heard today was the fact that God has already saved us, and now asks us to obey and trust. Too often we expect to obey and then ask to be saved. I realized I have done that SO much. God has shown me over and over that this is not in my control. No matter how I eat or what I do for myself, this is out of my hands. That doesn't mean I shouldn't take care of myself, but it does mean that He wants me to trust Him, not just me and all the voices around me. We are all different. I can't control cancer away, or make it better. I used to think just a change in diet and making better choices could heal me. It can't. I think cancer attacks us from many different angles, and He's the one that knows My story. It's not my job to know everyone's or what everyone else should do... just me. I'm His. I love the way the Children of Israel kept thinking they were led away to die in the wilderness. I used to think they were so ridiculous for not trusting when God delivered them, fed them, gave them water when they were thirsty, etc. But I know that's me! Every day I have to trust all over again and remember all He's already done. 

Okay, that was a lot. But there are just a few things I have learned 'in the middle' I want to capture:

• Everyone is carrying their "hard", so be kind. I don't know what anyone else is carrying, but it's hard too! I'm learning to trust that everyone has their journey, so my job is to be kind. I have no idea what their perceptions are but God loves ALL of us.
• Be authentic! I feel like I've spent my life doing what everyone else wants, or trying to just be what others needed. I always tried to be authentic, but maybe I haven't always been totally true to myself. Sometime's it's hard when people seem to want you to agree with them. Also, when you have a disease, everyone has an opinion on what you should do. It's sometimes hard to hear my own voice and God's voice when I'm carrying everyone else's fears, not just my own.
• TRUST! I have to trust myself, but also God. He has delivered, He can deliver, and He will.
• Nothing is all good or all bad. God made us. He knows what we're capable of and what our bodies are capable of. That doesn't mean science is wrong. But we are also all individuals.
• We can't see the full picture. So we have to trust the one who does.

It's the middle of the night and I can't sleep. I hope I haven't said too much, or too little. I think it's important not to over-share. And I'm not naive enough to think I'm the only one going through something big. But somehow, I hope that my desire to trust might help someone else too. And it's part of being myself. Being willing to be vulnerable. To say I make mistakes and to be okay with that. And to help others know it's ok that we screw up sometimes. It's all part of the journey. Someone called this life "practice", and I liked that. We are practicing, and somedays we are rocking it, and somedays we just get through. But it's all part of the journey.