Long Distance Cancer Support
Editor's Note: The following post is by Nicole Sheetz, who is part of Lilly's Clinical Design, Delivery and Analytics team, with nearly 20 years' experience in the pharmaceutical industry across a broad range of roles. She is, first, sister, mother, wife and daughter, and, second, clinical trial advocate and innovator.
A sister is your built in best friend at birth. She’s the one you call.
In Part 1 in this series, titled “My Sister has Cancer. Now What?,” my sister and advisor in all-things-life was staring down Mt. Everest and she’d never really been hiking. She was forty-one years old, a mother of 2 boys, a wife to a hard-working man, and a woman with Stage IIIA triple negative breast cancer. It was my turn to use my healthcare background and the resources around me to guide her and offer support as she navigated the intensely difficult and tangled web of cancer treatment in our healthcare system today.
Adjusting to the New Normal
My sister, a 5th grade teacher, finished the school year with her class in June without revealing her diagnosis. She needed to live into it and was not ready for those looks of pity from fellow teachers, parents, and especially not students. She was also protecting her son, an outgoing 3rd grader at the same school, from those awkward moments where fellow students and their parents just don’t have the right words to say. I packed up my kids to go to Carrie’s for the summer. Thanks to a supportive boss, I was able to reduce my work schedule to 60% and shift work responsibilities to other incredibly understanding co-workers. I wasn’t really sure what I was going to do, and I wasn’t really sure she wanted me there. But something told me to go–that it was somehow the right thing to do. We pulled out of Indy leaving Daddy behind and arrived to find my sister–emotionally fragile, scared to death, but keeping a brave and busy face on at all times.
I realized in the first 5 minutes of arriving that this–putting on an “I’m in control” face–was going to be the hardest part of Carrie’s journey. Knowing this was a turning point in how I consciously chose to work with Carrie over the course of our 9 weeks together. You see, that’s how we do it in our family. We don’t talk about it. We don’t wallow in our own misery. No pity parties here. We put on our big girl pants and we get busy. I had 9 weeks to build a base through her very strong local family and friend network, and I needed to be able to stay connected to provide long-distance caregiving. There was no time for leisure, no days of pretending cancer wasn’t in the room with us. It took us about a week to settle into an openness and a rhythm that only people that know one another can really do. It’s amazing to me that we have not lived together since college (20 years ago, GULP!), but I still know how she takes her coffee…how she likes her towels folded…how she hates a dirty baseboard.
Starting Cancer Treatment
Chemo was to start right away, but first she needed surgery for her chemo port. Port placement was not perfect and it eventually required antibiotics to resolve infection at the port. The port caused much pain and swelling, plus it was very hard for Carrie to pick up and hold her baby boy (2 years old) without causing trauma to the port area. None of us were anticipating port issues, but I guess we all live, learn and grown through these situations. On that first day of chemo treatment, Carrie looked like any non-sick person…a little tan, bright-eyed, full head of hair. She leaned over to me and said in her most sarcastic voice, “I guess everyone knows who the newbie is today!” and then she and I both snorted with laughter. Her treatments continued every week when her blood counts would allow them, and by August, she began to morph into the person with cancer that can no longer control her world. By this time, the support network was in full swing. The family was at-the-ready and grandparents really do know when to jump in and shine. T-shirts were printed and distributed: C3 (Cure Carrie’s Cancer). In true Southern style, she had lots of meal help, organized by Carrie’s dearest local friend. Childcare and carpooling were worked out for the remainder of August and into the school year. House-cleanings were booked at regular intervals.
Finding the Right Technology Tools
The well among us do things every day without appreciating how hard they might be if we were sick: child care, pet care, transportation (think soccer mom), grocery shopping, hair appointments, volunteer obligations, social commitments, yard work, house cleaning, and more. The list goes on and on even before the addition of healthcare-related items like doctor visits, treatments, blood draws, prescription filling/refilling, surgeries, and physical therapy. Thankfully, we had technology tools that enabled a connection reaching further and faster than would have been possible just a few years ago. Carrie and I are not techy, but we are also not afraid of technology. Log-in names and passwords don’t bother us. We sat down and took full advantage of several free tools. Social connection was important to Carrie, but Facebook, Twitter, and Instagram were not what she wanted. In fact, she requested that no one discuss her condition on any of these platforms, and we all respected that request. Truth be told, it’s exhausting to respond to everyone’s concerns and awkward to discuss in the midst of back-to-school pics and images of fabulous lunch plates from mild acquaintances.
Using Technology to Coordinate and Connect
Carrie needed a safer place to share her journey and so she chose CaringBridge. It was and is a good tool, and she was able to keep us informed and laughing with her along her journey. CaringBridge also gave people following Carrie an opportunity to donate to cancer research, something Carrie was proud to promote. Carrie’s healthcare network also had a good patient portal. Once signed-up, she could direct message clinical staff, see appointments on a calendar, view medication history, monitor laboratory readings, and review what was planned for her next treatment cycle. The portal allowed Carrie to grant me access to her records, which helped bring data and pragmatism to our otherwise emotion-filled discussion of why she had to skip a cycle. I could also ask the clinical staff questions. The 3-way virtual conversation between me, my sister, and the nurse or oncologist was invaluable in understanding why decisions were being made. One last online tool that was used was Meal Train, an online calendaring system where interested givers can sign up to bring a meal. Carrie and her entire family really appreciated this tool. It allowed them to see what days meals were coming, what the meal maker chose to prepare, and what time the meal was going to arrive.
Health Technology Continues to Improve
These tools were invaluable for what they individually offered, but I kept wondering how much nicer it would have been if they talked to one another, had a single sign-on, were mobile-friendly, and had the same look and feel. Luckily, there are many people out there that are not satisfied with the status quo. I’m one of those people that always expects more, so I’ve been watching new technology that is aimed at making the patient-caregiver-supporter network easier to manage.
What if there was a platform that integrated each patient’s needs, allowed access to health care data and easy access to providers, supported caregivers, invited other supporters into the mix, and took advantage of local resources? What if clinical research could be inserted into this holistic view when applicable and not a disparate, scary add-on to an already hectic and overwhelming system?
New technologies are trying to address aspects of the above, plus other things like mental health for people with illnesses and their caregivers. A few that impress me are:
- Wellist is on a mission to “make life easier for patients and their families.” They offer online personalized services AND a gift registry that they call Wellistry. Clever, right? They are trying to bring together hospitals, service providers, friends and families to support patients in times of need. I was very impressed with this solution, but I want it to expand beyond those lucky folks within the 857 area code.
- What Friends Do is an easy-to-use website designed to help family and friends form a "team" and respond in an organized, helpful way. It includes a calendar that filters and color codes by various tasks that a support network may be helping to complete (e.g. meals, transportation, yard work).
- CanSurround is focused on those affected by cancer. It is beautifully designed and tries to integrate critical components of disease state management. They offer checklists and trackers, journaling, a circle of support for caregivers, and other mind-body tools to enable users to reduce stress and connect their minds with their bodies.
Each of these newer tools takes a step towards something better. However, none offer full integration with healthcare providers and patient-specific information. Plus, global scalability remains a challenge. If my sister were faced with starting a virtual support network today, something like these newer websites would be helpful, but not the panacea we are hoping to obtain. Innovation requires us to ask hard questions and tackle hard problems. We must try to do better and to not shy away from the challenge of bringing together health care, research, and the daily life of individuals. They are not separate things. We can no longer ignore the need for their integration. Our lives, and the lives of our sisters, brothers, mothers, fathers, children, and friends, depend on seeing the full picture of daily life and well-being in one view.
In the next blog about my sister, I’ll discuss considering a clinical trial and answer the question, “When it’s your sister and you work in clinical research, what questions do you ask and what do you recommend?
You can share your own experiences or thoughts about technology’s place in supporting patients and caregivers by sharing with us on Twitter.
Until next time, Nicole S
Blog post originally appeared on LillyPad.