More on COVID-19: Knowledge and Comfort

I have a bunch of stuff lined up to write about -- some FDA news, for example, and some other research results related to Follicular Lymphoma.  But it doesn't seem right to get into those things right now when there seem to be immediate concerns about Covid-19 and what it means for us as FL patients.

I'm not quite sure what to say, because I'm as confused and unsure about things as all of you probably are. I don't know where individual readers come from (unless you tell me), but I know which countries people come from in general (I have readers from about 80 countries in all). So I now a big portion of you come from countries that are dealing with the Corona Virus -- many from the U.S.A., lots from Europe, a few from South America,  and then from other parts of the English-speaking world like Australia and Canada.  It seems like the virus is affecting all of us in some way --
or it will soon.

My response to this is my usual response to anything related to FL -- try to find information. For me, knowledge is comfort. I feel much better if I know what I'm dealing with.

Unfortunately, I can't find anything that really addresses what all of this means for Follicular Lymphoma patients, specifically. As I said in my last post, I feel like I'm in that "in between" that most FL patients find themselves in at some point -- not really sick, exactly, but maybe not completely well, either. I had a check-up with the oncologist about 5 weeks ago. My blood counts seemed fine. Does that mean I am not immuno-compromised?

I don't feel like I can contact my oncologist to ask, because, honestly, I think other people's problems are bigger than mine, and the oncologist should be spending time on them, not me.

I did, though, find someone in an online group who copied an email from the oncologist with a little more info about that patient's particular situation:

"In regards to your diagnosis, you have follicular lymphoma, which is a cancer of the lymphatic system, and the lymphatic system's function is to help the body get rid of wastes/toxins whole also transporting the infection fighting cells of your immune system to help fight off any viral/bacterial/pathogen that enters the body. As of your most recent visit with blood work on [date], your White Blood Cell and Absolute Neutrophil count were normal, which means you do have an adequate supply of neutrophils (white blood cells that are the first responders to fight off infections). That being said, because you have follicular lymphoma, you are likely at somewhat of an increased risk for infection compared to the average healthy adult without follicular lymphoma. The degree of increased risk is not known."

A few things about this -- I am assuming this was an actual communication from an oncologist, as the person said, and not something that was made up. (If I was going to make something up, I'd be a lot more creative about it, so I assume this is all truth.) It's also written specifically for this patient, but I assume it is generalizable to ALL Follicular Lymphoma patients.

So working on those assumptions, I at least have a little more information than I had just a few days ago. Yes, I am probably "normal" in some ways right now. But in other ways, I do need to be more careful than most people.

I wish I had something more than that last line -- "The degree of increased risk is not known." But, as I said before, I'm used to being "in between" these days. I can't know much for certain. I will work with the informaton that I have.

And so, my family and I will continue to behave as we have been. We're spending a lot of time in the house these days. We have a 1000 piece puzzle laid out that we continue to work on. My wife and I are working from home, and our kids' college classes are online. We're keeping busy.

But we're not shut-ins, completely. We're going for walks. We're going to ask a neighbor to have a tea party -- we'll meet outside, between our two houses, each of us bringing our own cup of tea, and sit 10 feet apart from each other. Far enough to stay safe, close enough to feel like we are with someone we like to spend time with. We're trying to be creative about maintaining social distance while not falling into social isolation. 

In terms of self-care and getting comfort from knowledge, my next step is to find some information about how to deal with the fear and anxiety that comes from this very unusual situation. Follicular Lymphoma is, and always will be, an emotional disease as much as it is a physical one. We need to find ways to take care of our mental health.

I'll share what I find.

Take care, everyone. I wish you all peace and safety through al of this.