By Katie Patterson – Caregiver
When my husband was diagnosed with CLL in September 2018, it was a surprise. But it also provided an answer for the bouts of extreme fatigue that had become more common for Dan in the preceding years. The good news was that he already had a doctor at Duke University Medical Center, who immediately referred him to her colleague, Dr. Danielle Brander, one of the top CLL specialists in the United States.
Not only is Dr. Brander a frequent presenter for CLL Society patient programs, she also presents her CLL research at international medical conferences. I joined Dan for an initial consultation with Dr. Brander and her team and asked many questions, where we received specific information about his diagnosis. Like so many others, we heard what felt like a mixed message: he has a blood cancer, but they are not going to treat him now. Dan is in the “watch and wait” mode with blood work several times a year to monitor any changes.
That news was surprising, but not the first time I had heard of CLL. My father had CLL and I remembered some of the chronic elements, such as fatigue. But that was more than 20 years ago, and I lived several states away. I was lucky that my mother, a retired nurse, went with him to appointments. Several of my siblings lived nearby and had care partner roles, as he had CLL for many years.
My role would be different with Dan. As I joined his journey, I quickly learned that much had changed in recent years, including better distinctions in CLL diagnoses and new treatment regimens. While he did not have an immediate treatment plan, Dan initiated a quest to learn as much as he could about CLL, from the types of tests and interpretation of various results, to the technical jargon. He even joined a clinical trial looking at the role of exercise.
I am especially pleased that Dan found the CLL Society, as it is an amazing resource for patients and those who love them. He joined the closest support group at the time, which was meeting monthly near Charlotte. We went to several Saturday meetings together and joined a Facebook group they host. Dan went to some meetings on his own, but with ~3-hour drive each way, it was a long day unless combined with an overnight.
I cannot thank that group enough for being so welcoming to us as new members and embracing me as a spouse/care partner who could join the conversations with questions and perspectives. For one of the meetings, they even invited us to bring Sadie, our retriever-mix who is certified as a volunteer therapy dog. We also responded to a CLL Society survey about the potential for new groups, including one that could be based near Raleigh. Not only was that new group started, but Dan was invited to be a co-facilitator.
Our leader in Charlotte had shared how new facilitators received training at the CLL Society headquarters in California and visited a long-standing group there that includes Dr. Brian Koffman and other society leaders. That commitment for training and mentoring was encouraging in concept, and even better in practice. I was able to attend the training as an observer and was impressed by the information packed into the day. In particular, the focus always would be supporting group members where they are, but not giving medical advice; keeping the meetings friendly, but on topic and on schedule; and reminding the members of the variety of free information and resources available through the CLL Society.
The Raleigh group had just one in-person meeting in 2020 before COVID shifted the meetings online. While I valued the personal connections, I was also impressed with how the CLL Society quickly adapted to online sessions to support members with CLL question amid a pandemic. Our group has done quite well in the video format and draws members from the Research Triangle area that includes Raleigh, as well as from the NC coast, mountains and even into Virginia.
I am still learning so much about CLL – and I do not always get the Bloodline quiz questions right on my first answer. But I know that if I have questions, I can check with our members or the website. One of our members was diagnosed more than 20 years ago and regularly reads articles from medical journals that are shared on the weekly CLL Society updates. Others are newly diagnosed and have many questions. I am so pleased to hear their voices change as anxiety levels seem to drop, and they learn they are in a supportive group – not just a “support group.” We have many regular members, along with others who come when they have questions. Our biggest session was when Dr. Koffman joined us for a great discussion of COVID protocols for CLL patients.
My role as a care partner is to continue to learn all about CLL. Thus, I have watched several of the live patient forums and from the online archive, and have mentioned them to new members. As a communications professional, I am excited about the CLL Society website updates, new opinion pieces and other ways that Dan and I can engage with our group as well as with members across the United States and beyond. In fact, Dan has joined the CLL Society’s patient advisory council.
Thank you to the CLL Society for all you do!
Care partner with my husband, Dan Patterson
Wake Forest, NC
An Ohio native, Katie Patterson has lived in North Carolina for 36 years. She is a communicator for three university-based science programs. She is married to Dan Patterson, a member of the CLL Society’s Patient Advisory Board. They hope Molly, their Toller pup, will grow into a volunteer therapy dog, as were three of their earlier dogs.
Originally published in The CLL Society Tribune Q4 2021: Caregiver Edition.