I listen to the gentle waves lapping at the beach. A gentle breeze rustles my hair as I stare out across an emerald ocean. After several weeks of self-neglect I am finally focusing on self care with a visit to the beach. As I gaze across the bright white sand my mind drifts. Today I am thinking about persistent immunocompromise after cancer.
This week, a year to the day after the breast biopsy that would ultimately lead to my cancer diagnosis, I sat in my immunologist’s office as he delivered another hard blow. The good news first…they have finally figured out the underlying cause of my persistent immunocompromise. The bad news…it is genetic, permanent, and will likely worsen over time.
This is rare. We’re talking really rare. So rare that as I physician I had never even heard of it. Rare seems to be my calling card these days. Rare cancer. Rare immune disorder. Lucky me.
On receiving the news I had a mix of feelings. Part of me felt relief. At least I finally had a name to go with the monster that has made my life miserable over the past months. Once you know the monster you are fighting you can pick the proper weapons. And as I have said many times before, knowing is so much better than not knowing.
I also felt sadness knowing that this will be a life long battle for me and will never be in my “rearview mirror” as I had once hoped. Life will truly never be “normal” again. The physician in me had suspected this already but getting the concrete proof was pretty difficult.
Then there was a mix of surprise and fear. I was genuinely surprised to learn that my incredibly rare form of genetic immunocompromise is incurable and will likely progress into something more severe over time. The only treatment involves injections every two weeks or IV infusions every month. I have seen patients’ kidneys fail from this particular treatment. The thought of kidney failure and hemodialysis is truly terrifying to me. It gives me the same feeling of horror as chemotherapy does.
Over the last several days since I have learned of this diagnosis I think about it often. I turn it over in my head and examine it from every angle. This did not happen because of the cancer…the cancer happened in part because of this. Wow.
I wonder what life will look like in the future. Will I be tied to self-injections and constantly covered in bruises? Will my kidneys fail? Will I begin to have frequent infections? Will I be able to safely travel again? These are all questions that swirl through my mind. And the answer to each is … I just don’t know.
But there is something different this time. There is something different in the way I feel about this setback. Though it is arguably the worst news I have received since the news of cancer itself, in some ways I feel at peace with it. I certainly don’t feel broken down and beaten like I did with my broken hand or when I first learned of my abnormal immune labs six weeks ago.
I feel like this is just one more burden that I will carry with me. But I feel like I CAN carry it. And that feeling of having the strength to sustain is new. Maybe it comes from the beginnings of acceptance. Maybe it comes from the fact that I am very literally physically stronger than I used to be even a month or two ago.
Whatever the reason, for the first time in a very long time I feel up to the challenge. And with this setback I was not reduced to a melted puddle of suffering and fear. I just put my head down and my shoulder into it and kept on trucking.
So here’s to strength and perseverance, the journey of healing has only just begun.
