Day 752/124


and everything seems to have gone terribly wrong that can
but one breath at a time is an acceptable plan
she tells herself
and the air is still there 

~ani difranco


It seems that as soon as we have a moment to exhale, it’s time to take another deep breath.

This morning Benjamin felt badly as soon as he woke up. I was determined to help him keep on top of his nausea and pain today, and maybe even to get him to eat something. I talked him into taking Marinol, even though he was sure that taking the pills would make him vomit. He bravely swallowed them. I was so singularly focused that I wasn’t paying attention to his IV pump, through which an acid reflux medicine was dripping. As soon as it was finished, Benjamin tasted the saline flush that followed, and he vomited. The timing could not have been worse. I felt awful.

Once Benjamin was comfortable again, I walked over to the computer and asked our nurse to pull up his labs (we’d slept through shift change today). I felt like I’d been punched in the stomach. Benjamin’s white blood cell count doubled overnight. His blast percentage increased. This is not supposed to happen right now. The nadir period of Benjamin’s three day chemo regimen hasn’t even started yet. I tried to calm myself down, reminding myself that one day does not a trend make. It is also Sunday, the least reliable day in the lab. I have to wait until tomorrow to see what these numbers are really doing. Still, it was hard to breathe.

Benjamin’s platelets and hemoglobin both dropped since yesterday. While a transfusion was prepared, we were visited by a physician from the pain team. I like everyone I’ve met from that department. We discussed other options but didn’t make any changes to Benji’s plan today. He still has the Fentanyl patch on, and the physician reminded Benjamin that he has morphine for breakthrough pain as needed. “It’s up to you,” she said. “You know best what you need.”

Benjamin’s pain increased throughout the morning, and he agreed to a dose of morphine. The medicine, plus whatever Marinol remained in his system, combined to make him comfortable enough to entertain the idea of food. Michael and Banyan arrived with the Sunday donuts, and Benjamin had the tiniest bite of one, and a sip of orange juice. It was a start.

The oncologist on call this weekend came to check in with Benjamin. After hearing about his prolonged tummy discomfort, she requested an upper and lower abdominal X-ray. I was grateful for another diagnostic opportunity. It wouldn’t show the polyps revealed by Benjamin’s colonoscopy in September, but it would show any intestinal blockage. There wasn’t any. Just gas, and a clearly enlarged spleen.

Benjamin’s new tolerance of food conversations was so encouraging. We suggested several things for lunch, seeing if anything would stick. Hearty chicken noodle soup was something that didn’t sound repulsive. Michael and Banyan went right away to retrieve it. In the meantime I turned on Benjamin’s old favorite, the Food Network, and we watched Giada and Bobby Flay. Benjamin fell asleep in my arms, and stayed there for three peaceful hours.

Michael and Banyan brought soup and several other provisions back with them, but Benjamin wasn’t hungry when he woke up. He was hurting again. He did agree to another dose of Marinol, much to my relief. It seemed to help his nausea but it didn’t touch the pain. He was moaning softly and rhythmically. Nurses came in to visit and none of their old tricks were working to cheer him up, not even silly string. A huge storm was rolling in, and I was scared. Increasing pain, increasing white cells, and he looked so small to me. What the hell is going on here. 

Benjamin took another dose of breakthrough morphine tonight, and the combination of medicines worked. Michael and Banyan had to leave early to circumnavigate the closed Skyway. By the time they got home, I was able to report that Benjamin enjoyed water, tea, and a little popcorn with our evening movie. I saw sparks in his eyes I’d been waiting for all day. I tried not to act too excited, but I thought my heart might explode.

At the end of every deep breath is another exhale. When Benjamin feels well it is so much easier to return to hope. Tomorrow is a new day. We will make the best decisions we can for our boy, and we will do whatever we can to make him comfortable and happy. One day at a time. One breath at a time. It is an acceptable plan.

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