We all know that healthcare and health insurance costs are wildly unaffordable. What happens when one of our own, who has some means but is not “poor enough” to be given charitable care, has to find a way to survive a cancer diagnosis? Can our community itself devise a way to help this person and others in the future?
It’s not easy to hear your doctor say, “You have cancer.” It’s not easy to talk about the diagnosis. It’s not easy to build a new business with cancer looking over your shoulder. It’s not easy to focus on a new venture while trying to just survive – physically and financially. It’s really not easy to have to ask your family, friends and community for help. And it’s not any easier when you look like you’re healthy but your body is waging war inside and the battle has not been won. It’s not easy when you’ve already spent thousands of dollars, your family’s and your friends’, but much more will be needed. It’s not easy when your insurance won’t cover the costs of traditional therapies, much less cutting edge technology. Clearly, it’s not easy being LaMarion Spence right now.
C is for cancer. Spence isn’t really comfortable talking about himself. “I was diagnosed in 2015 with non-small cell lung cancer. (There are two main types of lung cancer; about 80-85 percent are non-small cell lung cancer and about 10-15 percent are small cell lung cancer.) Traditionally all cancers have been treated similarly in Western medicine, using chemotherapy and radiation. These are very hard on the body, and often end up killing the patient before they kill the cancer. Very recently, research scientists are concentrating on targeted treatments that focus on the specific cellular make up of the patient.
According to Spence: “My tissue has been studied by one of the best genetic research centers in the world and based on their readings, my team at UCSF has selected the most effective course of treatment for my cellular mutation – targeted oral therapies. Cancer treatment is evolving, and there are new treatments and oral regimens that attack rogue cells while bypassing healthy cells and tissue, showing very promising results. I’m on my second targeted oral treatment, called Astrazeneza. It has been very successful in killing my specific cellular mutation, which is called a TK180. The first medication I took began to lose effectiveness – that’s what happens. My doctor and the UCSF Oncology research team have advised this route as it has very few side effects and allows ample time to wait for immunotherapies (strategies to strengthen the immune system) to be developed as a more permanent course of action.”
Expenses for the toxic chemo/radiation route or the targeted therapies/immunotherapy, are astronomical. As Spence explains, “In medical treatments, I’ve spent personally over $100,000, my family has contributed at least that much, and close friends have spent about $50,000, as well as untold amounts of personal sacrifice and support. I do have ‘good’ insurance, which takes care of about 75 percent of covered costs, but the uncovered 25 percent costs are between $5,000-10,000 per month. The therapies I am privileged to have are not approved by insurance, so thus are not covered. I’m anticipating $250,000 in costs in the next year, but just don’t really know the amount. So, I’m asking for any help now, because we don’t know what course of action will be next. I’m hoping for immunotherapy, which is dropping in cost, but also is not covered by insurance.”
C is for Community. Many in Healdsburg and beyond know and appreciate Spence for his humor, generosity and kindness over the last 18 years here. He’s one of the many people with substance and depth that keep it real in Sonoma County and who straddle the divide between new and old, tourist and local. He happens to be one of the few black people in a mostly white and Latino community.
About four years ago, before diagnosis, Spence started Seeded Juice Company, which has not yet provided an income. Imagine trying to keep your head above water financially with a new business and a diagnosis of lung cancer. He hasn’t had a salary, but is committed to these locally sourced juices of the highest quality and formulated to be medicinal in their effect.
Spence is an important part of Healdsburg’s close-knit community. He created and underwrote a community brunch called “Stone Soup,” to help neighbors meet neighbors in a town where great wealth and scraping-by-poverty reside next door to one another, but don’t know each other’s names. Having spent the first half of his life on the east coast with a career in finance, he always longed for more intimate connection to others. So, he hit the road heading west, landing in Healdsburg in 1999. Here he launched an imprinted sportswear business, was board VP and managing partner of a major winery/vineyard, served as board president of Healdsburg Animal Shelter and now is on the board of Healdsburg Jazz Festival.
From what we know, Spence is pretty lucky to be alive – but he’s not out of the woods. There is much mystery, trust, treatment and expense ahead. In spite of “good” insurance and support of family and friends, he’s going to need money. This ask and effort is no more or less than he would do for any of us – anyone in our community. In fact, Spence sees his cancer journey as something to learn from and share with others in the future. Friends and family have started online GoFundMe campaigns, but in all honesty, the amount needed seems overwhelming and people tend to freeze up – What do I give? How can I help? Will giving what I can, even if it’s a small amount, really help? The answer is yes.
As Spence’s friends, we’re asking anyone who lives here to contribute to Spence’s campaign – and soon. Says Spence about his adopted hometown, “My relationship with my community is about commitment to do better for one another. As an entrepreneur and sole representative of family here, I am dependent upon my community to meet me on my aspirations to evolve into a better human being. I am not any more worthy than anyone else to seek the support of others. I just know that it is a challenge that I, and my family (none of whom are local), are trying to meet to the best of our ability. We’re not alone, and I hope my example is inspiration for others to connect to one another. I simply want to be witness and live a story worthy of telling – and laugh with others along the way.”
Please give generously, and with love, to our friend Spence. Donate online at www.gofundme.com/spenceindeed. Write to Spence with questions, offers of support and ideas at
sp****@4o*********.com
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And just as important: share this story with your social media circles and neighbors, please.
Rhoann Ponseti is a Windsor resident and marketing consultant who is one of Spence’s many friends and admirers.
