My eyes are puffy and my head aches. I am starting my night shift in just a few minutes and I am not feeling up to it. Today was a bad day, and I have hit another setback after cancer.
I should have known…it was literally only yesterday I was feeling a sense of finally being ok, but today the sands have shifted and I am again feeling like I am flailing in the dark.
Sleeping during the day is difficult. My sleep is light and frequently broken. Today was no exception. Around midday, unable to fall back into an even light form of sleep, I made the mistake of checking my phone. What awaited me was a relatively urgent message from my immunologist asking me to call for lab results and to schedule an appointment. Uh-oh.
Knowing that the moment I dialed any hope for daytime rest would evaporate, I quickly made the call. I was informed by a nurse that last week’s test of my immune system had resulted. It wasn’t good.
My body did not respond to the vaccines or immune challenges I received six weeks ago. I am still not making antibodies. Eleven months after my initial diagnosis of breast cancer I remain immunocompromised. She scheduled me for a follow up in 4 weeks. Four weeks is an awfully long time to wait when your life is on the line.
Stunned, I hung up the phone and immediately burst into tears. Frustration and disappointment crashed over me in waves. I was genuinely surprised. My immune system should be kicking in again by now. Could my immune compromise be a long term or permanent issue? Is this need for social isolation going to be a fact of life forever? I have given up so much. This is simply no way to live.
As I sobbed I thought of all the trips I wouldn’t take. It has been almost three years since my last travel adventure and my heart longs for it. I desperately miss the days of freedom of movement. I miss having long stretches of time without doctors’ appointments. I miss being able to plan travel without having to worry I will end up sick or hospitalized in a foreign healthcare system. Nowadays I am so tied to my local doctors appointments it is hard to get even a few days away.
Hot tears continued to streak down my cheeks as I thought of all the indoor dinners I won’t have with friends and all the hugs I won’t share with my 2 year old petri-dish of a niece. All the trips to the crowded streets of New Orleans I won’t enjoy and the visits to Virginia Beach to see the newborn niece I have never met that will have to be put on hold. I felt crushed under the weight of it all.
I thought of how disappointed my husband would be. I could already feel his anger and frustration knowing that I will have to continue to refrain from gatherings with his family and our mutual friends. He will feel I have let him down. In that moment I felt powerless and enveloped by a sea of loneliness. I couldn’t bring myself to tell him.
The tears finally slowed. I splashed some cold water on my puffy face and laid back down with the hope for some sleep but sleep wouldn’t come. What next? My mind kept asking. As a physician I know there is no cure for a suppressed immune system. There is no magic medication that will jumpstart my antibody production. I will have to learn to live this way and accept taking some chances.
I was surprised by my reaction to the results, after all I have been living with immunocompromise for many months. Frankly, we wouldn’t have even found the immunocompromise but for the fact that I am a physician and I know my body so I insisted we look.
Back in February I got a simple non-COVID upper respiratory infection and could not get out of bed for a week. I was so sick for so long the pulmonologist in me knew something was wrong and requested a referral to immunology.
Sure enough, initial testing suggested I had an immunoglobulin deficiency and months later I am still not responding to vaccines or making protective antibodies. I wonder how many survivors are out there with no idea they have compromised immune systems.
In the same way my insistence on early screening caught my breast cancer, my insistence on screening caught my immunocompromise as well. I am really getting sick of being right all the time.
This means even when I get my COVID and flu vaccines I am still vulnerable to severe disease. Even simple colds could land me in the hospital, and COVID or the flu could kill me. It is a pretty scary scenario for a lung specialist who sees patients with contagious pneumonias and respiratory viruses on a daily basis.
Wasn’t it only yesterday when I said, it will be ok when I’m not ok again? I guess it’s time for me to practice what I preach. So I will give myself a little time to be sad and then I will dry my eyes and start moving forward again. These tears, like all the others, will pass.
In the meantime, I will continue to pray for strength and have faith that even if I can’t see it now, there is a reason for all of this sadness and suffering. I will do my best to trust in the Plan. I must admit these seemingly never ending trials have taught me to be humble and grateful. Each time I am given a new barrier I am reminded that I am not the one in control. So here’s to faith and perseverance because at the moment I am in desperate need of both.
