We’ve been married for 21 years so taking care of my husband is not new. But when the surgeon told us that the mass in his pelvis was leiomyosarcoma, a rare cancer of the soft tissue, in that instant, both our lives changed.

Five months prior to the diagnosis we were biking in Croatia. Now, travel and an active social calendar have been replaced with referrals, doctor’s appointments, tests, procedures, and seven lines of treatment to date. Navigating the health care system is time-consuming and at times frustrating but we are fortunate and grateful for access to high-quality care and expertise in multiple states.

Bill went to his first appointment in Boston alone. I was in Florida preparing for visiting family. He was scheduled to return to Florida two days later but instead was admitted to the hospital for a second biopsy in two weeks. The cancer had metastasized.

Journeying Together

Now we go together. I bought a purse-sized notebook with a plastic lime-green cover and I take notes: names, dates, procedures, medications, treatments, and side-effects. I arrange and prepare for appointments, handle travel logistics, explore available resources, and coordinate care between multiple providers. I manage three separate electronic patient portals including follow-up on test results and visit summaries. The good news is that two years and ten months later, I am on my sixth lime-green notebook.

We are not alone on this journey. It quickly became clear that texting updates even with just immediate family was unsustainable. A CaringBridge site allows me to efficiently share consistent information with family and friends. The thoughts and prayers of this growing community are comforting and a constant gift of love and support. Unexpectedly, I enjoy writing a blog and it helps me process and clarify my thoughts about our experiences.

Finding Joy

Advocating for Bill is a full-time responsibility that I embrace willingly and with love. Being a caregiver is a very different kind of relationship that needs space for loss and sacrifice as well as joy, and there is power in my ability to curate the part of our lives that I can control. But for me, a life worth living has to be about more than cancer. We hug often, watch the sunset, and thank God daily for our many blessings. We are more patient with each other, we listen, and small kindnesses don’t go unnoticed. We savor moments of joy in each day, even in a pandemic and relish small pleasures like the shared digital photo album of our great-granddaughter. We love spending time with family and friends and favorite foods brighten any day: strawberry milkshakes, molasses cookies, and fried clams.

Bill reads multiple newspapers a day, preferable the print edition, which facilitates his broad interest in the world, even when our own world has narrowed. His love of all sports and especially his beloved Boston teams provide him, seemingly at least to me, endless entertainment. I make sure there are newspapers and cable. Technology has enabled me to adapt some of my interests. Instead of volunteering as an art docent, I attend virtual art lectures. I join book clubs and author readings via video chat. Online photography classes provide a creative outlet, and I have learned to play chess. Reading and knitting fill the hours in waiting rooms and during chemotherapy infusions, and there is usually a jigsaw puzzle on the go.

Ways of Coping

I was encouraged to find someone to talk with so I meet regularly with a Stephen Minister, a trained layperson of faith who shares my journey. I feel like I am coping well until I am not. It is often the problems unrelated to Bill’s health that are overwhelming, and then my stress level becomes evident. I give myself permission to yell, curse, or cry, and then I stop, breathe, and focus on what needs to be accomplished in that moment. The problem is rarely deserving of the energy it steals from me. Walking with a friend or one of my favorite podcasts redirects my focus, and just being in nature heightens all of my senses to the positive in the world around me and eases my mind.

My husband prays for courage, strength, and acceptance, and our days are brightened by his sense of humor and a shared positive attitude. This is our life, and each day together is a gift.

 

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