Andrew continues to suffer from severe fatigue and sleeps for many hours during the day. The most obvious culprits are the infection and low platelets, but we learned today that his adrenals are not producing enough cortisol, which can make you weak and tired. We know there's a metastasis on his adrenals, but being on an extended course of steroids (like he's been since having seizures in early July) could make your body stop effectively producing cortisol. The treatment for taking too many steroids is taking more steroids. They're increasing his dosage starting tonight and will see if that helps with adrenal function and energy.

Andrew's palliative doctor is working on other medication ideas for managing his energy. She put out an SOS to her fellowship group chat, and someone suggesting taking short-acting stimulants a few times a day. He'll start tomorrow to see if that can give him a boost.

We've also had conversations with palliative about changing our expectations about ever getting back on chemo and how it would go if we did. The doctor is concerned that his body is so weak and sick that more chemo could send him on a fast downward spiral. After some consideration, Andrew agrees that it makes sense to take chemo off the table. It no longer makes sense to get a bone marrow biopsy either because that was meant to inform whether to get chemo despite low platelets.

While this isn't the outcome we wanted, we both think this is the right thing to do. Chemo is a means to an end—the goal is to get it when scheduled, then get it again the next time you're scheduled. Then keep going for two months until you can get a CT showing tumor shrinkage. Andrew is so far away from that being his reality.

We've considered whether the next step is hospice. For now, this is not a good option due to too many restrictions. For one, you can't get platelet or whole blood transfusions while on hospice. Not only do they have a palliative effect for Andrew, but his hematologist says they're necessary to continue living, period. Hospice also wouldn't allow IV hydration if he needed it and definitely not meds for energy. 

The whole point of hospice in our minds is to live well and comfortably as long as possible. If he went on hospice now, it seems like it would decrease his time left. Instead, he'll continue to be under the supervision of the doctors who care about him and know him well. They are willing to be on call for questions that I might ordinarily ask a hospice nurse and help us make decisions about what to do if things go wrong.

We are both at peace with this decision but also open to the idea that things can and will change, probably in ways we can't anticipate today.