Alula: the digital resource I wished existed when I was diagnosed with cancer
Dear friends,
Today, I am over the moon to launch Alula’s full product experience, with all the tools and features I so badly wished existed across the many years that I spent in cancer treatment.
Alula is a radically honest resource making cancer less lonely, built by someone who’s been there. We support people, families, and friends through the entire lifecycle of cancer, from diagnosis and treatment through recovery, survivorship and bereavement.
As our team has been building and putting finishing touches on each new feature, it’s been impossible for me not to think back to the ways I had to “hack” solutions to common cancer problems because something like Alula did not exist when I was sick.
It swells my heart that starting today, patients will no longer need to hack all of the anxiety-drenched communications, coordinations and logistics that fall on their shoulders after a cancer diagnosis.
Below, I’ve shared a little bit of the inspiration behind each of Alula’s features.
Alula’s Finding the Words tool
In January 2018, after weeks of secretly coordinating biopsies, cat scans, and pet scans, I finally had to face what I dreaded the most: telling my friends and colleagues that I had cancer. That I wasn’t sure what the next couple of months would bring, or even if I’d even be alive by my 30th birthday.
I shared the news the best way I knew how — on Instagram, along with a photo I had taken at the Huntsman Cancer Institute while waiting for my first appointment with an oncologist.
As I attempted to make sense of my new reality and to share it with everyone I knew, I struggled to find the words. How could I share something scary but still express hope? With our Finding the Words tool — a customizable email template — we’ve taken the guesswork and stress out of communicating this news.
Alula’s Marketplace & Recovery Registry
Within hours of sharing my cancer news, my Instagram post had gathered hundreds of comments and my text messages were blowing up, with loved ones asking “What do you and Ben need? How can we help?”
My husband, Ben, and I wished we had the knowledge to organize a response, but we were two weeks into a rare cancer diagnosis, and the truth was we didn’t know what we needed. During the insomnia-filled nights I laid awake, I searched for answers on Dr. Google. What I found was that no one had made it easy for cancer patients and caregivers to understand and access what they need.
Thus, for much of my first treatment, I had to discover the products and services on my own. I hunted for answers in treatment waiting rooms, asking strangers where they purchased their glamorous head coverings after hair loss. I befriended my oncology nurses, building an Excel sheet of their product recommendations that would help me feel less pain.
I yearned for a marketplace that took the guesswork out of this! And, truthfully, I yearned to be able to register for the products that made sense at different moments of treatment so my “love army” of friends and family had a place to go to see how my needs evolved and what would be helpful to send.
Starting today, patients can shop our marketplace (which has been curated by patients and survivors) and create a Recovery Registry for all the items they might need during this experience. Our partners range from McKesson Corporation (for at-home medical supplies such as thermometers, oximeters, and supplemental nutrition) to AnaOno (for comfortable post-mastectomy wardrobe staples), and countless other brands in between.
Alula’s Profile & Care Calendar
The other logistical nightmare during treatment was keeping my love army abreast of the dizzying treatment timelines. During my initial treatment, I blocked and tackled each text checking in on my whereabouts during the six cycles of chemotherapy and immunotherapy. It was exhausting. Oftentimes, I wouldn’t respond to texts for weeks, until I felt less weak.
So when my cancer relapsed, and I’d have to undergo a more complicated treatment schedule, I feared how I’d manage the communications. I was about to undergo 17+ weeks of treatment, which included nine weeks of chemotherapy, two weeks of radiation sessions and an autologous stem-cell transplant, where I’d be hospitalized for about a month and in a post-transplant quarantine for 100 days.
Because Alula didn’t exist, I hacked together a color-coded Excel spreadsheet and shared it with my co-workers and loved ones. I imagined everyone would look at it once and forget about it. But, over the next four months, my love army checked in on this calendar routinely. Depending on the week, they would offer to drop off homemade chicken soup, visit me at the hospital with a watercolors set, or run to Trader Joe’s for a haul of blueberries and broccoli.
It was clear that patients needed a one-stop way to organize visitors, volunteers, and all the support required during treatment and recovery, so we built Alula’s Care Calendar. The shareable calendar allows patients and caregivers to manage their appointments in one place and keep loved ones up to date. Friends and family can easily sign up to volunteer to help with transportation to appointments, prescription pick-ups, or simply time to be by a patient’s side during recovery.
Today’s only the beginning. Our team is focused on continuing to evolve and expand our platform to ensure patients and caregivers have everything they need, in one central location, to lessen the logistical, emotional and financial burden they experience while living with cancer. We’re eager to hear your feedback.
Welcome to Alula and the club that we both never asked to be a part of. But, perhaps there’s magic in discovering the fragility of life and doing it together.
My warmest,
Liya
