The holiday season is a time for friends and family to get together and catch up. Those with chronic disease, such as CLL, inevitably are asked about how we are feeling. When I am with family and friends, people seem surprised when I give a quick update and then really want to move onto other topics.
On the one hand, I am thankful and fortunate to be surrounded by real friends and a loving family who care enough to ask. But by the same token, I suspect most people in similar shoes don’t want to be defined by their ailments, and just want to be known for the other things in their life.
There is no question that family and friends are critical in the fight to beat a chronic disease. Nonetheless, there also is an equally real need for a community that is acutely attuned to the unique perspective of those who are in the cancer fight.
During my first year as a formally diagnosed CLLer, my hematologist wanted me to come in on a bimonthly basis until he could get a handle on how the disease was progressing. He also wanted to use these sessions to get a read on who I am as a person. It was rather funny, because he characterized me as being wrapped a little “tight.” As a reforming workaholic, I thought I had made some changes as a consequence of having CLL. I thought I was chilling a little bit and trying not to work so hard. I actually would stop and smell a few roses along the road.
As the year progressed, my white counts and ALC started to increase at an accelerating rate. The hematologist did not seem particularly worried but said it was something to watch. He was pretty emphatic that he treats the whole person, not white counts.
As a CLL newbie, it was of little comfort to hear that the disease was advancing. Given my 11q deletion, maybe I really did not have a relatively benign flavor of CLL. After the fourth or fifth visit, the white counts really spiked, and this now became worrisome. Would FCR be in the near future? Would my red cells get wiped out, and I could no longer exercise and ride far? The “worry” part of watch and worry was rearing its head. It was a very dark moment, and I needed help to deal with this.
A friend suggested I contact the Leukemia & Lymphoma Society. LLS subsequently arranged a conversation with a distance athlete who had Lymphoma and had completed treatment. It was helpful to hear about his experience with blood cancer and its treatment. I did not feel so alone, and not so freaked out. I was so grateful that I joined the LLS Team in Training program to ride centuries and help the cause.
In the ensuing summer, I learned so much from my TNT teammates about dealing with blood cancers in general, and about CLL in particular. I was very guarded at first but came to trust that our Saturday ride team was a safe place to open up about having CLL. Other than my immediate circle of friends, family and caregivers, this was the first group I opened to about CLL. It was a magical summer of Saturday rides, and we did an early fall century ride as our event. At about mile 80, one of my partners was having a tough time on a particularly nasty hill. I told him that if I had to carry him and his bike the last 20 miles, well, be ready. I was not going to leave him behind.
This past year, I tried and then had to drop out of TNT. Between fatigue, and some other things, the great TNT century ride in California’s wine country was just not in the cards. Nonetheless, on ride day, the team was face booking and sending out near real-time posts to those of us who could not participate. Although thousands of miles away, they did not leave us behind.
Patient Power, Health Unlocked, CLL Society, CLLPAG, LLS, Dr. La Verne’s Awesome Adventure and others all provide safe communities where CLLers and blood cancer patients can learn and gain strength from each other. We aren’t different and just are people trying to deal with something none of us wanted. As a point of fact, this blog would not even exist in the first place were it not for the efforts of people in Patient Power and CLLPAG.
The take-away is that community does matter in dealing with a chronic disease. When you are in a community, you don’t feel alone, and the collective experience of others helps you deal with things. Importantly, you don’t have to explain that CLL while in watch and wait is on your mind, even when you try not to.
In the short time I have been a member of the CLL club, I have come to rely on these communities.
Please share some of your stories about how the “Community” has helped you or how you helped somebody else in our predicament. I am looking forward to seeing all of your posts in the comment section! Your posts will inform others.
Thank you for reading!
Always hope. Never quit.