Just to share some clinical updates, since I am sitting here hooked up to chemo for what feels like the 8th hour in a row (it’s actually only the beginning of the 4th hour but geez, they are running s-l-o-w today):
• intrathecal methotrexate has vanquished its target cancer cells for now—I am down to one MTX dose every other week from starting at 2 per week in the beginning of February.
• still getting combo of gemcitabine & carboplatin 2 wks out of 3. This switch from my original chemo, Eribulin, was made last fall. Eribulin sure worked for a long time (19 months?).
• still getting bone-building helper drug Xgeva/denosumab every 28 or so days too, because it might help prevent bone mets.
• I signed up with a palliative care nursing program and now I get seen by a visiting palliative-care nurse weekly at home, plus access to a physical therapist, social worker, and chaplain if I want. All at home which makes a HUGE difference. There are significant parallels between homebirth midwifery–all sorts of authentic midwifery–and hospice nursing care. Of which this palliative focus is the first stage.
• through the palliative care program, I found a pain-management MD to handle all my pain problems/pain meds centrally. Too bad she practices in Mass.!
• At her advice, I went off amatryptilline–one pain-relief med–and my increased dizzy spells decreased again, yay (both in frequency and in severity). So I guess that was the final straw (many of my meds say “May cause dizziness”).
• I switched in May from morphine to methadone for my main pain relief, hoping to get more solid relief with less fogginess. So far, same level of incomplete relief, less fogginess. So now we increase the dose to see if I can get better relief. Areas that hurt: left knee, currently broken left foot, both hands (numb and clumsy and touching most things now hurts (like popcorn and velcro). Back less than before. Headache much less than at its worst.
• The big thing going on, besides the 3 broken foot bones, is fatigue of both mind and body, and shortness of breath (likely due primarily to lung mets, but we’ll find out more at my next scans). I don’t go out much. When I do have a day that includes more than one or two events, I need to rest up afterwards–and beforehand if I’m smart. I am slowly getting used to this. It is still sad, though, how everyone around me has redefined a “big day” downward over recent weeks so that a current big day contains the same number of events an easy day used to contain.
One thought on “Brief clinical updates”
Good news about the intrathecal methotrexate, and being off at least one med (Amitriptyline). I hope you will find the right dose of methadone to give you more pain relief while still keeping the fog at bay. Your point about the parallels between homebirth midwifery and hospice nursing care is really interesting and points starkly to the idea that we can all probably benefit from strong support systems to usher us along every ongoing segment of this journey we call life.