The holiday season, coupled with weekly multi-day trips from Chicago to Houston, has put me super behind in “life” and work. But today, I am down here again to start Week 4 of dose escalation of Venetoclax, so wanted to update on Weeks 2 and 3.
Week 2 included another relaxing stay at the hospital for 2 nights (I kid). The nurses and other caretakers are wonderful, but there is minimal rest to be had as an in-patient.
On 12/14, my blood results were:
- Man Neutrophils—4%;
- Man Lymphocytes—96%
Self-advocacy as an in-patient
Hospital medication errors are commonplace and after my recent stays, I wanted to pass on a few tips. I am being treated at a top-notch institution, and still, it was imperative that I was aware, asked questions and debated several topics to ensure the treatment I was (about) to receive was necessary. Examples: the hospital staff had the Venetoclax dosing and dose increase information correct, but as far as my other current medications—Ibrutinib, blood pressure medicine, Prozac—they did NOT have the proper dose and dose schedule correct. It actually caused me to miss about a half-day of Ibrutinib dosing because the orders were not correct. No big deal, but an error none the less. Also, the in-patient protocols here include vitals taken every 4 hours. On my first visit, I complied, but this resulted in me getting woken several times during the night for nothing other than a temperature and blood pressure check.If I were ill, or having heart issues, this is necessary. But I’m fighting a slow-growing cancer that causes fatigue, so I need my sleep! For visit #2, the new nurse came in my room and started writing “vitals every 4 hours” on my patient board. I asked if that was really necessary. She seemed stunned—perhaps no patient ever has asked to be exempt from this activity!? Anyway, she ended up admitting that I could “decline or refuse” that service, so I did. We negotiated that they would take my vitals around 11pm, when they typically did another blood draw, and then would not take them again until about 6am, when another blood draw was necessary. My negotiation resulted in 7 hours of peace!
Packing for the hospital
In my opinion, earplugs and an eye mask are absolute essentials.