Day Plus 11: Cancer Really Sucks

by Jana

Last spring I wanted the Cancer Sucks sticker. But now I am in the market for a Cancer Really Sucks one because it better reflects my feelings on the matter.

Oliver's skin is burnt from the radiation and incessantly itchy from the morphine. He has weird rashes, which may be a sign of graft verses host disease ("GVHD"). This is expected, and not particularly bad, as no one escapes GVHD entirely. The hope is that Oliver will just have mild symptoms and never develops acute or chronic GVHD, which can involve debilitating, painful or sometimes even fatal complications.

Oliver had sinus surgery and a lung biopsy yesterday. He is now on low oxygen and bleeding routinely from his nose.  Because of findings from a recent sinus surgery and CT scan, Infectious Disease is treating him for  invasive fungal infection in his sinuses and his lungs. It will likely be a few days until we know which type of fungus is causing the infection and just how bad his prognosis is. At this point in Oliver's treatment, though, every single one of the possibilities are scary. Some just more so than others.

The mucositus from the chemo and radiation has worsened, but is being well managed. Oliver chooses to use a little white board or motion to communicate more often than not because it hurts so much to talk. He is pretty self sufficient with his pain pump and his mouth/throat suction that he uses when it is too painful or there is just too much blood and such to swallow.

His vision has temporarily worsened, making reading and screen time of any type difficult. Even with eye drops, things are still slightly fuzzy. Since reading is not an option, we have been listening to books on tape and reading aloud. He has resumed his crocheting with a vengeance.

When he was completely blind for a month last fall, we would read to him hours everyday. Often when we would try to stop, he would insist we keep going. Many times I would be reading standing while doing squats in the middle of the night to keep my eyes open, because Oliver's insistence that I keep reading seemed to come from a place of real need. Crocheting seems to be coming from that same place these days.

After surgery yesterday, he sat in a chair in his room crocheting until he could no longer keep his eyes open one more minute. Watching him intently crochet while calmly suctioning, pushing his pain pump or wiping the blood from his nose in between stitches, as he was actively fevering, was both sweet and heartbreaking and totally surreal.

The other day Oliver told me that he had felt God really close to him all day. Since being diagnosed with AML last fall, on the rare occasions he has said things like that, I freak out a little but am ultimately intensely relieved. While Oliver knows first hand that cancer really sucks, he also knows first hand that God really loves him and that His love for him really is unfailing.

Post surgery crocheting.  Working on Dr. Verma's scarf.

Oliver was happy his scarves were well
received by his little sisters who were able to say
hello from the hallway. 
His first two yarn scarf. Crocheted for Brenda, an awesome
PA on the BMT team, who he really likes.

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