Living Life with a Rare Disease | A Look Back on the Last Year
A lot can happen in a year, and seemingly nothing at all when it comes to living life with a rare disease.
It has been nearly one year since my MRI revealed tumor growth post-chemotherapy treatment. While I’ve been open about my journey throughout the years, I haven’t shared much publicly since that day. No concrete path upon which to tread has left me needing some space to process each component of this ever-evolving story.
Newsletter subscribers have received a few updates related to living life with a rare disease, and today, I’m offering a glimpse behind the scenes into what life with a Desmoid tumor has held this year.
In truth, the blog and my writing life have been quieter this year. Navigating the ups and downs of living life with a rare disease has taken an emotional toll leaving me with less to pour out, but through it all, contentedness has been felt where I am. Serving you through words continues to be a joy. Thanks for being part of this space where I hope to continue to offer what I have to give in hopes it encourages you within your own journey.
Life with a Desmoid Tumor: Reflecting on the Last Year
Healing from Loss and Navigating Growth
Since last October, each passing MRI has shown slight but continual disease progression. Having endured a miscarriage in August, our hearts were heavy. We questioned if the window of opportunity to start a family had been closed.
Navigating a pandemic, health changes, and familial challenges all began to strain our marriage. The weight of it all felt like too much. Knowing we needed additional support, we began working with individual counselors and a marriage counselor to process the questions, fears, and uncertainty.
The main question always lingering: if or when we should try to grow our family. In many ways, it felt entirely out of our hands as we healed from loss. Continually handing it over to God was how we made it through—trusting in His timing.
Over half a year passed before we felt open to the idea of growing our family. With another MRI on the horizon, wounds beginning to heal, and feeling in overall good health, we grew expectant for positive scan results.
Weighing Treatment Options in Light of Additional Growth
Unexpected news was revealed instead. After a last-minute appointment change, I was scheduled to see my oncologist’s PA. She informed us my oncologist was recommending we pursue treatment. We were devastated.
Voicing our hopes to start a family, we awaited a call from my oncologist to discuss options. When we spoke, he presented options that would be safe while trying to conceive. Little did we know, I was already pregnant.
Thrilled and terrified, within days of finding out I was pregnant, I was scheduled to see a radiologist to review my case and determine if I was a candidate for ablation. Our hopes were high at the prospect of a procedure that could eradicate the tumor and eliminate the need for chemotherapy. Maybe this was our shot at riding my body of this tumor once and for all.
But the radiologist had difficult news: I was not a candidate. The Indianapolis team would not be willing to perform the procedure. Whiplashed, we walked away discouraged yet clinging to hope. The doctor’s hesitation was sound: the risks outweighed the benefits. With my mobility in a near-normal state, undergoing the procedure risked nerve damage and complications that could affect me for the rest of my life. We were tethered to hope by the radiologist’s care as he walked us through the scans taken the last two years—leaving us reassured of a minimal rate of growth.
Pregnancy and Tumor Treatment Decisions
Left unsure how to proceed, we scheduled a follow-up appointment with my oncologist. Walking into the room, he asked, “Are you pregnant yet?” We excitedly shared I was 10 weeks.
Joy was present, but so was our reality: our options were limited. Acknowledging the tumor was not significantly impacting my daily life, and the growth rate was minimal, we decided to watch and wait. The decision made, my oncologist delivered another gut punch: he was retiring.
The news came as a shock. Navigating the future without him was a hard pill to swallow. As I’ve processed the reality, I’ve found comfort knowing that he’s taught me how to advocate for myself and what to fight for when it comes to treatment for this disease.
Living Life with a Rare Disease: What Comes After Watch and Wait
My latest MRI once again revealed minimal disease progression—a best-case scenario. While the growth rate remains minimal, my leg has started to show signs the disease is back. Still able to function normally, there is a general stiffness I contend with daily that has steadily progressed as the tumor does.
The future is no longer entirely unclear: there is a near certainty I will need chemotherapy once the baby is born. The lingering question is how soon and which form. Hormones produced following birth often trigger rapid growth in this tumor, requiring careful monitoring to determine how soon.
Offering us hope in the interim: I will not be required to undergo another MRI until the baby is born unless I opt for one. And there are at least two chemotherapy options that have a high chance of being effective. One I know, the other new to us.
No one dreams of beginning chemotherapy after giving birth. But the timing of the pregnancy in parallel with the slow growth has left us assured this is all part of God’s plan.
God’s Faithfulness Revealed in the Last Year
This year has held complexity and change—some within my control, but most well outside it. The joy of growing our family has eased some of the ache of what will come next.
The future is never certain—regardless of whether or not my body is rid of this rare disease. But I’m thankful to know that God has been and will continue to be with us through it all.
Every twist and turn of the past year, God’s provision has been felt:
- the unexpected timing of the pregnancy
- not having to decide between growing our family and pursuing treatment
- minimal tumor growth eliminating the need for intervention while pregnant (an option I prayed not to have to consider)
- God’s presence through baby’s kicks of reassurance during the last MRI
An emotionally hard year, God’s goodness has continued to offer us hope and healing. I pray that in whatever journey you face, you too have felt the same.
How have you felt God’s presence amid the trials of this past year? May you pause and reflect on all God has seen you through. May we honor the hard, seek the good, and find God’s provision and grace as we continue to endure.
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