Fresh Air
You were young, barely forty years old. You had a wonderful wife and two beautiful boys. You had a passion for the outdoors, specifically going for hikes with your family, where you could enjoy the fresh air.
Within a few days of being admitted to the hospital, your life flipped upside down. As soon as your bone marrow biopsy results came back, you were diagnosed with AML, or Acute Myeloid Leukemia. You absolutely hated being trapped in the hospital, never mind the claustrophobia that a small hospital room caused you. Your freedom and enjoyment of the outside world was taken from you in a flash. You didn’t have an outlet to relieve your stress anymore, and anxiety quickly consumed you. You developed panic attacks that were very difficult to manage. You became a prisoner in your own body. Once we introduced chemotherapy into your body, your blood counts plummeted as expected. This put you at a high risk for infection. You did everything you could have to try and prevent infection, but your immune system was just too weak.
Your hospital course was complicated by severe pain, starting with mucositis, or inflammation of your oral mucosa. The pain became so severe, you stopped eating and drinking. I remember you compared your pain with swallowing to shards of glass traveling down your throat. The mucositis got so severe that you were unable to swallow your pills. The pain even eventually prohibited you from talking. You fell behind on your oral hygiene because of the pain as well, so all the mucous in your mouth became thick and dry. At that point, it was difficult for you to breathe, even with the assistance of oral suctioning. We started you on a PCA to manage your pain and gave you nutrition through your central line so your mouth could heal. This only exacerbated your anxiety.
Everyone knew how badly you wanted to get out of the hospital. You were counting down the days until you could feel the sun and fresh breeze on your face again. However, each time you were discharged, you were re-admitted shortly after, most often for pain management.
It had been about a year since your diagnosis, and you couldn’t catch a break. When your mucositis cleared you developed GVHD, or graft versus host disease. This is the complication I fear most for our patients post stem cell transplant. GVHD can attack any organ system, and of course it attacked several of your organ systems, including your skin, eyes, mouth, and gut. I’ll never forget what a depression the discoloring of your face alone, put you in. You couldn’t even look at yourself in the mirror, never mind step out of your hospital room. You spent daytime with your lights off and shades down because you didn’t want anyone seeing your face. You never made eye contact with nursing staff, and your words were far and few between. When you used to talk, it was always about your two boys, who you were so proud to be a father to. However then when you spoke it was about the fear that took over every thought that crossed your mind.
The suffering you endured turned into PTSD. I’ll never forget the time you told me how fear was beginning to take over every decision you made, even outside of the hospital. You explained that you were even fearful of everyday things, like crossing the street without a crosswalk. You explained it was because you didn’t want to be arrested for not using a crosswalk and end up in jail. Just the thought of being confined in jail was suffocating to you. Your fear of confinement reached a whole new level, and you were never able to return to the way you lived, prior to your diagnosis, again. The fresh air that once provided you with freedom and joy now suffocated you just like the four walls of your hospital room. There was no escape. Eventually the only way to help you was to let you go. You transitioned to CMO and passed away with your family surrounding you.
I’m so sorry that your two little boys must grow up without their daddy, but I am certain they’ll always know how loved by you they were.