2021 was Hard

Everyone is Over It

I was driving home from a doctor's appointment with an Oncologist, and I was desperate for a distraction. I listened to a podcast interview with Billie Eilish and her brother Finneas, and the host asked, do you think 2021 has been easier than 2020? Finneas responded," no, because in 2020, we were all in this together, and now everyone is over it." This hit me in such a profound way. My family and my community did not have the luxury of being over it.

In my end of the year 2020 post, I wrote about how 2020 was the year of vulnerability for me. I had to learn to stop proving to people that I could out-hustle them. I learned that it was ok to ask for help to protect my health. That was a new concept for me because I had to acknowledge finally that I had a chronic illness. Strange, right after 20+ years of primary immunodeficiency (PI) that I am just now accepting it.

That acceptance is important because, in the first couple of months of 2021, I was in a funk, depressed, struggling. I have been in funks before, but not like this. I could usually pull myself out of it, but this was different. I needed help. I got lucky and found a great therapist who was set up for virtual therapy.

I came into therapy with what I thought was the problem, and after about a month, I realized it was something completely different. I have shared my struggles getting diagnosed and my strained relationship with my biological mom before. Additionally, I was having this strange struggle with my faith and death. I had gotten lost in the book series by Bernard Cornwell that inspired the Netflix series, The Last Kingdom, about the Viking and Saxon wars, which were very much about faith as they were about the struggles of culture. I think all of that, coupled with this unresolved trauma from my childhood and a global pandemic, just became too much.

I will never forget the therapy session where we dissected how I handled my health. I have always been a professional patient; it is literally what I did at the start of my career. People have complimented me for how I handle having PI, so I was shocked when I finally realized I was trying to live a life like everyone else around me, like a healthy person. Then when I would get sick, I rebelled and would not allow myself that acceptance or compassion. It was almost like this little PI monster lived in the corner and every once in a while would slap me across the face and disrupt my vision for how I should be living.

I got off that therapy session, and I was dumbfounded. I couldn't believe it, and it just made so much sense for some reason. Don't get me wrong, some other things needed to be addressed and handled, but this was a significant underlying piece of my journey. If 2020 was the year of vulnerability, then 2021 was the year of finding compassion for myself. And little did I know, I would need this compassion and what this breakthrough meant for me in just a few short weeks.

Scary Results

At this point, the walls in our house were starting to close in, and we decided to plan a staycation in Washington, D.C. During our brief stay, I got a note from my doctor that said in the MRI I just had the week prior, they had detected some inflammation in my metastatic lymph nodes, which could be lymphoma. I was shocked but maybe not surprised because I have been fortunate that my common variable immunodeficiency diagnosis has not manifested itself in any other way. I always suspected the other shoe would drop, but I was not expecting to see the words lymphoma.

On this same trip, I had convinced my wife to see my primary care group for some headaches she was having. This will come into play later, as she would get an MRI in the weeks to come. This, of course, set off a summer of doctor's appointments. I added several new specialists to my team, including an Oncologist, Hematologist, and Gastroenterologist. I was injected with more stuff and scanned by every machine possible at Georgetown Hospital. It was crazy.

In the midst of getting my first Oncology appointment scheduled, my wife's MRI came back that they found a spot on her brain the Primary Care Doc didn't like and warranted a follow-up with a Neurologist. We were terrified. We called my in-laws to come down to stay with my son because we would see my wife's neurologist and my oncologist all on the same day. That was a scary day filled with some tears, a lot of hand-holding and just silence.

Hurry Up and Wait

As it turns out, it is widespread for women who have had children to have small spots on the brain. Luckily, this spot was not in a critical area. The Neuro referred my wife back to her Primary Care doc for a follow-up, and so far, we are in the let's check this every couple of years and make sure it stays nothing.

I am still in a holding pattern of let's wait and see. Right now, we are calling it an inflammation problem. I am due to see all the "ologists" again in the spring, and more than likely, we will go in and biopsy a lymph node sometime this year to make sure we don't wait too long and allow this to become something. Could it be nothing, sure, could it be something scary, sure? All I know right now is all I can do is be positive, be grateful, renew my faith, and have a whole hell of a lot of compassion for myself.

My wife and I spent 2021 working from home with our 2-year-old son in the midst of this. We both have intensive jobs, and it was hard. I realize we were in an incredibly privileged position to work from home and line up some part-time care, but this was hard, then adding this on top of everything else was backbreaking.

With the intensity that was 2021, there were a lot of unforgettable moments. I have gotten to see my son grow up. In a world with no paternity leave, I have been home with him and had the opportunity to experience moments I would never have had. Truthfully, this got me through many challenging days. I became the husband and dad I wanted to become and developed so much gratitude for how good we have it.

I advocated for myself at work in a lot of ways. I am now home-based, so I won't have to struggle constantly being in and out. I can go into an office when it is safe for me. I had some big wins with insurance this year that will lighten the load for future years. I ended 2021 celebrating my fifth wedding anniversary with my amazing wife. We got married on New Year's Eve, and it is such a fun anniversary to celebrate every year. I get close out every year with the gratitude and blessings that my marriage brought to my life.

The Year Ahead

Truthfully, I am not sure how I got through 2021. Yes, it was compassion and gratitude, but some days were just through the sheer will of throwing myself into the next day. I am sure a lot of people will relate to that. 2021 was incredibly hard, but for some reason, there is this incredible feeling of 2022 being a new opportunity for something great, and I look forward to seeing what the journey through this year will bring.

I wish every one of you an incredible year ahead. I am in AWE of our great community of warriors.