C Day
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The Steinhaus Family
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The Steinhaus Family
This week has been long and hard. At times it felt like we were back in the hospital simulator, with the high velocity of information and shifting plans.
On Monday we met Andrew’s new outpatient cardiologist. He recommended against repeating the transesophageal echo because the findings wouldn't change the trajectory of Andrew’s treatment. We left that appointment feeling good about the plan to stop IV antibiotics and start chemo on Friday. The cardiologist called his oncologist and neurologist, and they all agreed.
Tuesday, we learned that his infectious disease doctor convinced the oncologist and cardiologist that Andrew needed two more weeks of IV antibiotics—but he could still start chemo on Friday as planned. Later we’d hear they extended it to six weeks of antibiotics. The rationale is that a) being on chemotherapy will make it more challenging for his body to fight off a potential infection and b) if he does have infective endocarditis (bacterial infection on his heart), it's still unclear what organism it is and some require six rather than four weeks of treatment. Essentially this is a hedge all doctors are okay with, and no one wants to mess up. His oncologist doesn’t believe antibiotics will hurt the efficacy of chemo.
On Thursday, he got his mediport placed ahead of Friday's chemo. We spent 10 hours at the doctor’s office/infusion center yesterday, starting with an appointment with the palliative care doc, who put together a new pain management plan. Then we saw his oncologist to review potential side effects and what we could expect over the next several days. Around noon, we settled into his private infusion room. Andrew loved his assigned nurse Shannon, and before we left, she put herself in as his nurse when we return in two weeks. He was also visited by a massage therapist, who did a short massage.
Unfortunately he got very nauseated soon after they started giving the first chemo drug (he’s on a cocktail of three meds) and never fully recovered. More than 24 hours later, he’s still experiencing severe nausea, despite many anti-nausea meds on hand, and hasn’t left the bed. He is a pretty good patient and will take a sip of water when I ask nicely (and multiple times).
Tomorrow we will go back to the infusion center, where a nurse will disconnect the 48-hour chemo pump he was sent home with and give him IV fluids. This isn’t mandatory—you can remove the pump at home—but given how sick he’s been I’m glad we made the appointment to return.
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