Day 753/125


It was still dark this morning when Benjamin woke up wincing. He said he’d had a bad dream. I asked him to tell me about it, he said he forgot, and went right back to sleep. I looked at the foggy sky, barely pink with the sunrise, and told myself if I could make out the Skyway, it would be a sign of hope. I strained my eyes and couldn’t see a thing. Finally, the two masts of the cable stayed bridge made themselves visible. Beacons. I smiled, and waited for shift change.

Benjamin’s lab numbers looked much more in line with where they should be today. They were nearly identical to Saturday’s labs. It was such a monumental relief, a deep exhale. But it is beyond frustrating that we’ve gotten fluke-y readings from the lab on at least three Sundays since Benjamin’s relapse. It affects all of us. I was a mess last night, and Michael cleared his schedule today, wondering if we’d have to change course. It’s a problem that needs a solution.

We gave Benjamin Marinol right away this morning. He kept it down, but his tummy was still tormenting him. We were visited by the pain team early today. We all agreed that we should increase the dose of Benjamin’s fentanyl patch, as he is still in need of so much breakthrough morphine. No other changes were made, but they added phenergan to our list for possible nausea relief. We won’t use it unless we need to.

Benjamin received a blood transfusion today; two full units. It was his 82nd transfusion. Our nurse hung the first bag, then the attending physician and nurse practitioner came in for rounds. I voiced my frustration over The Sunday Effect in the lab, then we went over the schedule for the week. Benjamin’s port is due for reaccessing tomorrow, but I’ve asked them to hold off a day and do the procedure while he’s under anesthesia for Wednesday’s lumbar puncture. I also asked if it would be worth contacting NIH early to see if we should combine a bone marrow aspirate with the LP, or if a peripheral sample would suffice. That will be up to Dr. Oshrine. They are scheduled to speak at the end of this week about next steps.

I also expressed continued concerns about the polyps we discovered in September via Benjamin’s colonoscopy. His persistent abdominal discomfort, lack of appetite, recent bathroom habits–everything always has me wondering if there is something we are missing. There is just no way to know. We can’t scope Benjamin again right now, the risk of infection is too great. We’re not scheduled to take another look until March, and I have seen no blood or any other red flags. It’s hard to ignore the possibilities. But I know that really, none of these symptoms need explaining. Benjamin has leukemia. It’s filling his spleen. It’s responsible for all of this.

Benjamin took a midmorning nap, and a physician and counselor from palliative care came and met with me. They were lovely. I still can’t believe they’re part of our team now. As they were leaving, Michael arrived to spend the day with us. He worked while Benji slept, from his makeshift office on 7 South.

When Benjamin woke up, he ate about six bites of food. Michael and I were grinning from ear to ear. In the afternoon, he took another nap, and when he woke up he was in pain again. The sharpness had returned to his spleen. Our nurse had just replaced his fentanyl patch, but the increase hadn’t taken effect yet. He asked for a dose of breakthrough morphine. In the meantime he soothed himself with slow, rhythmic moaning. I was reminded of the sounds I made when I labored with him.

A window of comfort followed the morphine, and Michael and I engaged Benjamin in an art project. I also thought it would be a good idea to get him out of the room for a change of scenery. He protested, but he made the effort anyway and bundled up in a wheelchair. I saw a spark of excitement at the prospect of visiting his nurse buddies, but it was clear after just seconds that it was too much. Benji was in tears. We scrapped our ambitions of a full lap around the floor and just went to the window at the end of the hall instead. It was nice to sit in the sunshine, if only for a minute.

Benjamin vomited again just before Michael left. I felt terrible. I’d requested his Marinol be switched to a schedule, rather than as needed, but I never followed up, and the afternoon dose completely slipped my mind. Michael assured me repeatedly that it wasn’t my fault. I just hated to see the only real quantity of food Benjamin has eaten in a week regurgitated in a basin. It seemed like something I could have prevented. I vowed to be more vigilant tomorrow, and to stop being angry with myself today.

Benjamin is sleeping soundly now, though there are waves of moaning throughout his sleep. Michael is home safely with Banyan. I miss home tonight more than usual. I miss packing two lunchboxes, presetting the coffee, setting my Tuesday alarm for a sunrise walk over the Ringling Bridge. I miss ending the daylight hours watching boys playing football in the street, cooking something in the kitchen, waiting for the sound of Michael’s truck in the driveway. But this is our life right now and I embrace it fully. Every step. It is an honor to be here.

16 thoughts on “Day 753/125

  1. You re all amazing and doing so good, but we al sure wish you could wake up to find this was the bad dream. Sending love and strength, so that if you have to do hard things you know you are not alone, and you are all loved.

  2. Oh that last part had me breaking as i sit and watch my boy playing in the yard In remission. I’m holding that vision closely for your family.

  3. Thinking of you all constantly… Sending love and positive energy. Praying for strength, comfort and perfect healing.
    So much love from all of us. Big hugs.

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