Another update on our journey... (Brief background: after over a year of failing multiple treatments to control his cancer, my husband decided in April that he did not wish to continue pursuing treatments other than palliative care. On May 27 we were accepted into a Medicare hospice program.)
So far our experience with hospice has been very positive. We've had in-person visits from our primary nurse and social worker. We get daily calls from the nurse to check symptoms and monitor medications.
My husband was initially diagnosed at stage IV due to an intractable pain in his hip. He's been on oxycodone/hydrocodone for five years. Hospice started him on methadone as an alternative long-acting pain reliever, with ocycodone for breakthrough pain. He also relies upon gabapentin, dexmethasone, and acetaminophen.
Methadone is tricky to initiate and titrate, which is why it is seldom used outside of hospice/palliative care or specialty pain management clinics. It's lipophilic, has a long half-life, and takes a while to "load in." The first week was pretty rough as the dose cannot be escalated more frequently than about every four days, so lots of breakthrough meds were needed.
But now that the correct dose has been reached, methadone has completely changed his relationship with his pain: it is noticeably better at controlling the bone pain and he's also been able to reduce the gabapentin, dexmethasone, and tylenol. He has more stable pain control than he ever has through the course of his disease.
Severe anemia was another issue that we desperately need to address. In early May his hemoglobin was 9.3 and hematocrit was 29. We called our oncologist's office and they basically refused to consider a transfusion unless he agreed to more treatment: "It's just the cancer..." (I mean really, WTF????) Three weeks later his numbers had fallen to HGB 6.7/ HCT 22. I printed out the lab report and handed it to the hospice nurse on our first visit, and she agreed he needed a transfusion as soon as possible. He was literally dying before my eyes, but it still took another week before we got in for the transfusion. This past Thursday he got two units of PRBC (packed red blood cells) as an outpatient, an ordeal that took eight hours of unremitting pain (those puffy infusion chairs are torture for someone with advanced bone pain). If my husband wasn't the man he is, he wouldn't have been able to bear the transfusion and would be on his deathbed by now.
Now, with methadone controlling his pain and adequate blood in his body, he feels better than he has in several weeks. He's working through a flareup of oral thrush but we're dealing with that as well as pretty severe edema and, of course, constipation from all the breakthrough meds he's had to take. Daily calls from the nurse make it much easier to get on top of issues as they arise rather than having them get to a crisis state.
They say that hospice can prolong life, and that is probably true in our case. We are getting better care than we ever had in oncology. It's tragic that a person has to be near death to receive this kind of targeted, personalized care. (I imagine if a person has gold-plated private insurance and access to a top cancer care clinic they might get similar care, but we're po' folks and have to make do with the SOC offered at our regional hospital.)
Today Steve took himself out to the garden and potted up a few plants, watered the greenhouse, and brought up a few buckets of firewood. A week ago he could not walk across the living room without getting out of breath.
One day at a time, we continue to live the best life possible.
Blessings to everyone. May your days be long and full of love and laughter!