Chemotherapy without Cancer

This week I will have my fourth round of chemo.
I don’t have cancer.

So explaining this treatment has been hard. Deciding to take this route doesn’t make sense to some. And thus, what can already be an overwhelming and isolating option has left me unable to really put words to this current part of my journey.

So I haven’t. A couple days ago I posted about how impactful the Sound of Freedom was. It was about the movie, but it was really about
faith and miracles. And hope. Because at the end of the day, my life and message seem to always leave me pondering faith… and hope… and miracles. It was my first post in 2 months. I think that’s the longest I’ve gone without updating or sharing my journey since I started this #TerminalAintTerrible miracle story almost 3 years ago.

Chemotherapy is polarizing. It conjures visions of swollen faces and bald heads. It’s a drug used to destroy in order that the body can rebuild. The side effects can be intense and the outcome isn’t guaranteed. It’s primarily used to treat cancer… but it isn’t just used for cancer.

I have end stage Scleroderma. Not only do I have this rare disease but I have the rarest form called Scleroderma sin Scleroderma. Where the normal markers and complications start at skin involvement, mine paralyzed my organs like my esophagus and my stomach. Over the past three years, I have experienced (and miraculously survived!) multi-system organ failure, sepsis, 23 broken bones and multiple surgeries, double lung pneumonia, congestive heart failure, the virus, countless blood transfusions, procedures and tests. There is no cure for scleroderma and there are very few treatments that have actually shown to lead to any improvement. If you have followed my story, none of this is new information. And it’s a lot of why, when I was given a dire timeline back in September of 2020, I chose to make some radical decisions in order to make the best of whatever days I had left.

The goal wasn’t to try and extend my life. In fact, heaven sounded pretty nice. My teeth were all falling out and my pain was immense. Altitude and cold weather made living in Colorado impossible, so I moved back to Florida where the beach was my backyard and in a world still so shutdown, my home church was open… and so was Disney.

I took up residence in an extended stay hotel, generously provided by my brother and lived each day as a gift. Sometimes in hospitals, but always if possible, making my way to the beach to see the sunset. Each painted sky a reminder of the closing of another miraculous day I shouldn’t have seen.

And speaking of miracles… that’s what my story turned into. A collection of them. So many “I couldn’t make this story up if I tried” experiences that I started using the phrase #TerminalAintTerrible to ironically describe the ups and downs of surviving a death sentence. Every single day that I have lived beyond that has been painful and difficult… and beautiful and holy. I learned over and again what I already believed: my hope wasn’t in the big
Miraculous moment but in the big Miraculous healer who would someday make everything whole. Even if that wasn’t until heaven. But, the crazy thing is, by living with my eyes toward heaven… I’ve seen Heaven come down to earth.

In late June of 2021, I packed up my car and drove to California from Florida, (yes, a single girl with a failing heart, still recovering from a massive operation to repair a fractured hip and femur) my end goal was to arrive at UCLA to try the only treatment that might improve my medical situation. The silver lining was that just before moving into my airbnb I would attend a Writer’s Workshop at the Oaks with Bob Goff. To say that weekend was life changing would be as much of an understatement as to say that Bob is an author. Being in the presence of someone with that much love, whimsy and passion… it seems impossible to leave without untethered hope. Not only that, but I met my mentor, Stephanie Nelson and countless others who, to this day are writing and inspiring and doing things to change the world. Those days spent in the mountains of San Diego serve as a microcosm for my life. Not living limited and saying yes to dreams accomplished by methods that don’t make sense, has left me with a collection of the richest of friendships and experiences.

The transition to California was turbulent to put it lightly. To be real, the greatest difficulty I have found in the last 3 years is that every time I think I’ve reached a point where I can share my story or use my journey for more than just posts on a feed, I encounter a setback that leaves my clawing for health rather than declaring my hope. Not only did my airbnb fall through, but upon running up-to-date tests in person, UCLA determined I was essentially “too far gone” for the treatment I had moved out to California to try.

That was July of 2021.
Today is July 17th, 2023… and I am 4 rounds into the chemo protocol I was disqualified from and wouldn’t have survived 2 years ago.

It’s a miracle.

It’s a story of hope and faith that fits quite well within the context of the journey of the last 3 years.

Chemotherapy can be administered in pill form, through an injection, drip or pump. It is used to treat cancer, but also blood disorders and autoimmune diseases. Some people lose their hair. Some don’t. Some people can continue to live life. Some can’t:

I am on a low dose protocol. With any luck, I won’t lose my (already thinned and extension filled out hair). But I may.

The last several weeks have been extremely difficult. After my first two cycles, my mom came out to be with me for third. Managing life on my own with my diagnosis and prognosis is always something I wouldn’t think I’m capable of. And yet, I daily surprise myself and doctors and continue living.

When my blood counts have dropped I’ve worn a mask. At church I saw some eyes of judgment that I’m sure I’ve held for “maskers” post-pandemic. And in that, I’ve developed an even deeper conviction to lead with love and lay down assumptions. Truly, we don’t know the road the person next to us might be walking or the bravery they have in battle simply because they have shown up to live the fight.

And I continue, and will to the extent which I am able, do just that.
Show up. Fight. Live. Attend prayer meetings. Walk the beach at Sunset. Go to Disney. Worship at church. Have coffee with friends. Dream of a future I know isn’t guaranteed. Write of the hope
I have found amidst it all.

It’s difficult. My difficult looks different than your difficult. But what I love about attending a prayer meeting is that the tears that stream down are faces might be brought on by completely different circumstances… and yet our extended hands and heartfelt prayers are lifted to the same place.
Our trials are unique.

But that shouldn’t lead us to feel alone.
I’ve mentioned more than once that my financial situation is pretty desperate. It still is. I haven’t been able to work for over 3 years and my disability check barely even covers my medical expenses any given month. The helplessness brought on by money can be embarrassing yet I don’t want my intentions to be misunderstood, so I struggle with mentioning it. But I know that if my words reach someone with a disability or a diagnosis that also leaves them feeling desolate, maybe at least, they will realize they aren’t alone.
As much as I have seen medical miracles I have experienced financial provision in more ways than I can recount. Generosity that has been a game changer, often coming through at just the right time. Sometimes I read of those stories when other people write them and it plants a seed of faith that maybe I will see fruit as well.

Maybe you are reading this and you are in the best season of your life. Maybe you are in the worst. Maybe you have cancer. A chronic illness. Overwhelming depression. Maybe you just lost a loved one, are experiencing insurmountable debt or a broken relationship. Maybe a combination of these has written an “I couldn’t make this up” chapter for you as well.

Whatever your season, my message is that this chapter isn’t your story.
Chemotherapy isn’t my story. Broken bones aren’t my story. Even Hyperbaric Chambers, disney passes, gifted concert tickets and Orange Country apartments aren’t my story.

Hope is. I am still believing for a miracle. I am not giving up on full healing. But I’m also not going to stay hiding because I’m embarrassed that I’m not yet whole. I’m not going to spend so much time trying to preserve the life I have that I miss the opportunity to live a moment I could never have imagined. We can’t stop living just to insure that we survive
The 1000+ days I have beaten death have given me a message. And all these chapters… they ARE my story.

It’s a miracle story